Blayne

2011-11-02T13:08:00.004-05:00

Its been a BUSY, BUSY year with lots of changes. I have had ZERO time to blog. Blayne has grown a ton and now in 2nd grade. He is doing great in school. If you want to stay updated on his progress I would suggest adding me as a friend on facebook.
Here are a few recent pictures

Still HERE

2011-05-31T20:42:00.007-05:00

Yes we are both still alive, yes this year has flown by, yes I will blog an update soon. For now here are a few pictures from this school year! Below is my 'piggy' in his school music program and he LOVED Easter this year!

Long overdue

2010-08-25T09:51:00.012-05:00

WOW... I can't believe how long overdue this post is!! First of all Hawaii was absolutly stunning. You can't see beauty like that and doubt God exists. I think my favorite part of the trip was the helicopter ride. We saw some amazing waterfalls! I was able to capture many breathtaking photos while there. Here are just a few to share:

Well, I must say I could not have prepared and was not expecting how challenging and time consuming this summer was going to be with Blayne. My days were consumed with him and I got little else done. Lets just say, he NEEDS school and so does momma lol. He loved Kindergarten and the routine was so good for him. He progressed so much in just a year. I am sooo proud of him. At his last report from school I found out he was READING words from flashcards!! I had no idea. He can read a total of 20 simple words out loud when prompted to. Of course he didn't always want to do it with me. Also some other huge news and progress..more on that later :) Somedays we have as I refer to 'Autism Hell' here and we had a lot of those this summer. He just got bored and I had a hard time finding activities to keep him entertained. We tried to get in a lot of horseback riding but it was way too hot most days. However, all in all we had a great summer break and got through it. One great thing that happened over the summer is he is now drinking from a cup. That has been a long time coming but he is finally doing it!

So summer is officially over and Blayne is in 1st grade this year! We started on 5 hour days and are hoping to work up to full days soon. The first few days were a little challenging just getting back into the swing of things but he is really happy to be back at school. He has the same bus driver and several of the same paras so not much change for him which is good.

Ok so now for the huge news...BLAYNE IS NOW WALKING! Yes independently walking. I can't believe it has taken me so long to share this news. Below is a video. He took his first steps by himself awhile back if you remember but it was just a couple steps here and there. In April during physical therapy one day he walked the entire hallway with no help and no falling. The past few months he has finally gained the confidence to be able to do it. It is still weird to look over and see him walking in the living room. I am soooo proud of him and how far he has come. You must watch the video below!! Thanks to the autism Blayne usually goes through stages where he really obsesses over a certain thing and we have gone through several over the years.Teletubbies, Backyardigans, wall-e, boohbah, he is still really into dinosaurs but his big thing right now..... Barney stage...yes please feel sympathy for me. I thought he was too old and we made it through this stage (he didn't care for it much when he was younger) I was wrong however. No matter how annoying it is when he sings the 'I love you song' it can't help but melt your heart. Yes buddy, you watch Barney all you want :)

Photo and video editing at www.OneTrueMedia.com

Make video montages at www.OneTrueMedia.com

Vacation for momma!

2010-04-14T14:24:00.002-05:00

Alright, so..lucky me gets to go to Maui Hawaii for 5 days! Just daddy and his two girls are going (not sure how much of a vacation it is going to be with my sister lol) anyway, this is going to be a much needed vacation for me and I am looking forward to a trip with just us. Now that I think of it, we have never gone on a trip with just us. I don't get to see my dad as much as I would like and miss him so this is going to be really good for us. I have never gone to any place 'tropical' like this and am very excited. I have been pre-tanning and actually have some color on my pasty white skin! That being said, I am hoping to have some relaxation and de-stressing from everyday life while there and when I get back I am going to work hard on blogging weekly :) I can't promise anything though. Just a lot going on personally and business wise for me. I usually keep my own life out of blogging as I like to use this for updates on Blayne, but I guess I am a part of that too! Well, once again I am single. This happened shortly after Thanksgiving I just hadn't been wanting to openly announce it. Lets just say that it was a blessing for that relationship to end. Not going to go into to much detail with it though, it just wasn't going in the direction I wanted for my life and Blayne's. I am just trying to get my life back on track spiritually and hoping and praying that God brings that right man into our lives. Anyone that wants to pray for this too are more than welcome ;) I am not rushing into anything at the moment but I really want to settled down and get married and have another baby or two. I just need to be patient. Business wise I am still working hard on getting my photography business going. I am not sure how much I will get done over the summer since Blayne will be out of school but I am planning on figuring it out so I can.

Speaking of Blayne, he is doing really well. He is on 5 hour days now at school and doing great! It is nice to have that extra time for me to work. Only 6 weeks left of school, can you believe it!? This year has gone so fast! Plans for this summer are more horse back riding and potty training. Some great news and a milestone is.....Blayne has taken several drinks of water from a sippy cup BY HIMSELF! If you have been following our blog you know this has been a LONG time coming. I am so proud of him. Now, keep in mind I have to coach him and sometimes hold his arms up to his mouth while he is holding the cup to do it, but then I let go and he goes ahead and takes a drink on his own. The past two days he has done amazing with walking and he is so close to walking long distances on his own. We are also praying that he will do this by summer. It would be a huge blessing for us. He can take about 10 or 12 steps on his own now. I am going to try to get a video of it in PT today. Well, that is about it for our update. I will post about my trip to Hawaii with pictures when I get back. Keep us in your thoughts and prayers for safe travels! I have been so blessed with such a great family and I thank God for that everyday, where would I be and what would I do without them!

Lost his first tooth!!

2010-02-02T17:00:00.001-06:00

Christmas is behind us and my little boy is officially 6 years old. He did great with Christmas this year and loved opening gifts. We are now into February, I still can't believe it. Kindergarten is also half over. As soon as Blayne hit 6 he got his first loose tooth and the week later he lost it. Since he got his teeth in late I thought he would lose them late too but I guess those growth hormones are really working! Unfortunately he woke up one morning and I noticed that it was missing. I think he might have swallowed it in his sleep?? Thank goodness I didn't see it or I would have freaked. That has been my biggest fear since thinking about him losing teeth, is that he would choke on it. Good thing he doesn't understand the whole 'tooth fairy' story or I would have ben in big trouble trying to find it!! Speaking of the growth hormones he is getting so tall and skinny. He is officially into the little boy sizing for clothes. I just had to buy him a pair of slim jeans. I never thought my little pudgy baby would be in slim clothes :)

Starting the first of next month he will be starting 5 hours days at school. Right now he is going 3 hours a day and next year will be 8 so just trying to build him up to full days. He is ready to go up in hours there. I have to admit I am really enjoying my free time with him in school. It has been good for the both of us. Looking forward to those two extra hours a day of being able to work on photography. This is terrible, but some mornings I can't wait for that bus to get here! I know all you moms can relate to this! So mornings he really tests my patience but I can't ask for a better kid. He is happy and singing most of the time. I guess we all have our 'bad' days. I am so proud of how well he is doing with school.

Walking is going about the same. He is able to stand for longer periods of time and just this past week or so I have really noticed his confidence getting better on taking steps by himself. He is trying to figure out how to do it and isn't freaking out in fear of falling. If he gets tired he will slowly get down to the floor to crawl. I try not to make a big deal when I see him do it because I don't want to distract him and make him quit, so I just quietly watch. I am so into the moment I forget to get the camera or video camera out, so I still haven't gotten it on tape. Oh and another huge thing is he is now getting up from sitting position to standing in the middle of the floor all by himself with no help. You know how little babies learning to walk do that and are unsteady at first? This is HUGE for him. I just love to watch him do it. He likes to stand in front of the mirror and do this too.

For some really big news we have gotten Blayne his very own horse! We started doing horse riding therapy awhile back but had to drive an hour one way and then pay so it was getting expensive when all said and done. It wasn't so much that but the fact that they were always canceling our appointments. We would always be excited and make arrangements around it only for them to call and cancel a few hours before our appointment, so it made it hard. We met some amazing people that gave us his own horse. She is perfect for him and so sweet. We couldn't be happier. Everything just fell into place and everything worked out so we were able to get her. Just one of those things that was kinda meant to be. I am so grateful for everyone that has done this for us. So now we have a horse 2 miles from town with an indoor arena to ride whenever we want. Unfortunately we have only been able to go 2 times because it has been soooo cold here. It is warming up this week thought so I am hoping to take him this coming weekend a few times. Below is some video of him my little video gamer playing the Wii and the first time riding his horse. As you can see he was extremely excited over it! Oh and he is also really into dinosaurs right now, I will post about that next time. He is insisting on taking over the computer at the moment so I will close with the video below.

Autism

2009-12-21T22:22:00.000-06:00

Wow! It has been 3 months since my last post. Where has the time gone!? Christmas is just a few days away! We are hoping to travel to Nebraska but are waiting to see if the weather is going to allow it. Things have been good here and as always, busy. Here is a little on what is new.

Blayne was officially diagnosed with Autism Spectrum Disorder in October. I knew it was coming and was somewhat prepared but it still was hard to hear, that yes my child does have it. It has always been brought up by professionals as he has grown. It took me several years to come to the terms and reality that this was another huge thing we were facing. I guess I was always in a bit of denial. Yes, my son did show signs of it but I thought his little 'quirks' where just part of what made him Blayne. I just thought, my son has brain damage so these behavior things had to be from that not Autism. I don't know. I think I just thought, my little boy has so many other things that there is no way we would be facing him Autism too. The truth is, no matter what he is still going to be Blayne. Autism is so much more known now that they can finally put a name to the behaviors. Even back when Blayne was first born almost 6 years ago Autism was more of a 'new' thing and now so many kids have it. I just keep having hope that someday they will come up with a cure for all of these things.

It has been nice when we meet new people or are in public, when Blayne is doing one of his 'quirks' I can say, he has Autism and it kinda clicks in their head. Again, since autism is so more known now people understand the behaviors more. Otherwise they just think there is something majorly wrong with your child or that you are being a bad parent for not correcting his tantrums in public. It is sad people are so quick to judge but that is the reality.

I did come across something online about probiotics and autism. We went ahead and called the company and spoke with the guy and his theory on it makes since. He is a chemist and doing his own private research on the gut and autism. Most kids with autism have digestive and bowel problems. I had start Blayne on probiotics for his bowel problems and to help his immune system. I just was trying to find a supply that we wouldn't go through as fast and something better. This company makes high potency custom probiotics. It was $180 for a bottle but it should last for 4 to 6 months depending on dosage. He has been on it for a week now and I have already noticed a change in his behavior. He is talking better and giving more eye contact. Just this morning he was looking me directly in the face and actually study my facial features. It was like he was really SEEING me not just looking. A couple days ago I cha

nged him and he said very clearly 'Thank you mommy" this is the first time he has EVER said this. It melted my heart. That same night my step dad was telling him goodnight and he said 'night night pa-pa' that is also huge for him. Another HUGE change is, for the longest time Blayne has grinded his teeth. It drove me absolutely crazy. I was told by a lot of people that it was just because he needed that sensory input because he isn't eating orally. Well since starting the probiotic powder he has completely STOPPED. I just noticed it the other day, it dawned on me that his isn't doing it anymore. So I am very excited that is might help him. If your child has autism or autistic charcteristics I encourage you to look into this. http://www.customprobiotics.com/autism.htm

Halloween this year was a disaster like last year. I think it is just to much for him. Maybe we will try again next year or maybe I will just give up for awhile and we can just pass out candy to kids at home. I guess we will just wait and see.

Other then that not a lot is happening here. I am dealing with some 'personal' issues and just consumed with everything. On the top of my list as always is taking care of Blayne. I was consumed with getting his feeding tube supplies and formula covered (cost or $2,000+ a month) since our private insurance changed as well as his growth hormone shots (cost of 1000+ per month) I dealt with this for about 6 or more weeks and we almost ran out of formula for Blayne. When that is all your child can eat it gets pretty scary. Thank goodness I had built up a good supply of extra in case anything like this ever happened. I have also been working hard on getting my photography business up and going. I did a Christmas photoshoot with Blayne a few weeks ago. He is sooo hard to shoot but it is classic him!

Blayne will be turning 6 on the 31st. It is hard for me to believe he is going to be that old. I hope everyone has a great Christmas. As promised here are some videos of Blayne in action! This was back in September. I was watching 'So You Think You Can Dance' auditions and Blayne heard the Black Eyed Peas song 'BOM BOM POW' and LOVED it! He kept rewinding it and just laughed and danced. If you can't understand him, he is saying 'gotta get that' and 'cue music' lol. p.s. don't mind the mess on the couch ;)

WALKING!!

2009-09-17T23:05:00.009-05:00

At the age of 5 years 9 months, 2 weeks and 2 days my little boy has taken his first steps. I cannot even expressed into words how this made me feel. It is one of the happiest moments of my life. I have imagined and dreamed of those first steps so many times. There were so many times I wondered if my son would even walk. Today alone in our living room at 6:00pm he took 4 baby steps to me. I immediately broke down. We have worked so many years in PT and at times certain therapists would say after the age of 3 or 4 it is more unlikely they will walk. I never let those words sink in. I knew in my heart he would walk someday. I am overjoyed and so greatful this prayer has been answered.

An hour later with my mom behind him and me in front he took another 4 big normal steps. I couldn't believe what I was seeing. YES he is walking! Now I understand it is going to take him a long time to build up enough endurance to just walk all the time but he will do it. Starting next Wednesday I am going to take him to hippotherapy (therapeutic horseback riding) and this has helped many kids learn to walk. I think this is the perfect time to start now that he has taken his first independent steps. I am also hoping it will help with his behavior as he has been biting a lot lately in frustration in his limited communication. Although he is starting to communicate more and more he still can't tell you when he is upset, frustrated or overstimulated.

I am going to video Blayne walking this weekend ASAP and will post it as soon as I do. It is unbelievable. For now I will leave you with a couple pictures from one of our fishing trips this summer.

School update

2009-09-04T10:56:00.005-05:00

This is going to be a long update just as a warning :)

Well Blayne has been in school for two and a half weeks now and doing great! I just remember last year he fought it and cried and got upset for about half the year. He LOVES it this year which is much easier on me. He also loves the bus thank goodness. I was really worried how he was going to do with that. Here are a few pictures from his first day

I stayed with him the first 3 days until his teachers and paras got to know him. I was right there so they could ask me what certain behaviors meant and letting them know what to do with him and what to watch for when he gets overwhelmed. He has gone for two full weeks without me now and is doing great. I ride there with him, get him in and ride back and then ride back to pick him up. It is getting to be routine and just this morning he climbed into his stroller all by himself and was waiting to go! I was so proud of him.

He is going to an amazing school with wonderful special ed staff and Blayne really likes them. He evens takes a few bites for them at lunch time. It has made this transition much easier for the both of us. With exception of biting a few times he has done really well. I think school is really going to help him in all areas of development. He has already mastered the mouse for the computer and was picking out words and reading them on the computer on one of his games. I really need to video it, it is amazing.

We have finally come to the point where it is time and we are both ready. Momma finally gets a break and some free time and it is good for him to have a break from me. I never thought we would get here so it is huge!

I must say it was heartbreaking for me as a mom to be there that first week. I always envisioned my little boy 'caught up' with his peers by his first day of Kindergarten and walking in with his little backpack on. He is in the special ed class for most of the day (still a hard pill to swallow) and has two other kids in there with him. They are both non-verbal and very involved. They are the sweetest things though. He goes down the hall to be with the regular Kindergarten class for some of the activities. This is going to be really good for him but to witness it as a mom almost brought me to tears.

I saw all the little kids running around in the gym as my little boy sat in his handicap stroller and had a meltdown from all the noise. In library all the other kids sat quietly and listened to the video as Blayne is over in his own world singing and laughing. He is the smallest in his class and the only one that can't walk. The kids kept staring at him. Not in a bad way, I know they are young and just curious. I know as the year goes on they will get used to him and be nice to him. It was just a big punch to the stomach to actually watch it. I thought I was prepared but I so was not. So I just know he is in good hands with everyone there and they will do great things with him.

On the eating business he will be off the bottle for a full month Monday! WOOHOO. This was a huge accomplishment. He hasn't gotten much better on the sippy cup but he is eating pureed meats and HE IS LEARNING HOW TO CHEW! Can you sense the excitement here?! A few weeks ago he figured out how to bite his teddy grahams in half with his front teeth. Before he would put it in his mouth and it would just sit on his tongue with his mouth open. Well the other day out of no where he bite it in half.

This is big for two reasons, one he has never learned to chew and two he hates texture in his mouth. He still isn't sure what to do once he gets all the crumbs in his mouth but is slowly figuring out how to chew on the side and swallowing. He LOVES Oreos and graham crackers now. He is actually chewing and swallowing them. It is a huge mess and I hate that he is eating junk but this gives me hope that he will eventually accept table foods!

For growth he has gained some weight. He is 37lbs 8oz and is 40 inches tall. He has grown a total of an inch and a half in two months on the growth hormones. In speech he is doing amazing. The other day we were in the doctors office and waiting forever and he said as clear as day "well lets go see if we can find her" and I said yes its taking forever and he said "yes I agree" I am so proud of him. He has come such a long way. One last thing to update on, he had a pre-screening for autism on Tuesday. We will get the official diagnosis in December if he does have it, which I am sure he is on the scale somewhere. I am anxious to see how he scores on it. Next post I promise will have some video clips of Blayne!

Summer ending

2009-08-14T22:08:00.005-05:00

Wow! Where has the summer gone? It has flown by for us for sure. Here is a recap of what has been happening.

Blayne started growth hormone therapy on June 25th. It was really scary at first. When the first shipment arrived in the mail this is what greated me as I opened the box. The growth hormone cartridges are in the styrofom cooler with ice packs since it has to be kept cold. Needless to say it was pretty overwhelming when I saw everything at once.

but now it has just became a part of our routine. I don't like having to give him a shot every night though. He has done great with it and it hasn't been nearly as bad as I thought it would be. After I give it to him he always wants to do it so he pretends he is giving himself a shoert in his stomach (since I always use syringes for his g-tube) it is pretty cute.

Since starting the gh therapy everyone has seen HUGE changes in him. In the first 4 weeks on it he grew a full one INCH and an 1/8th. I didn't even know it was possible for him to grow that fast. I haven't measured him lately but I am sure he has shot up more. He has been making eye contact and talking more ever since as well. I can't wait to see the progress he makes as he continues on the therapy. At his eye appointment this summer she said this is the best she has ever seen him and can really tell that the shots are helping him. Our biggest hope and prayer is that this is the last thing he needs to start walking. He is SOOO close.

Our newest change is regarding his bottle. That was our biggest goal for the summer and last week I realized we are almost out of time and still haven't gotten much farther with it. School starts for him this coming Wednesday and I refuse to send him to kindergarten still drinking a bottle. This is day 4 of going cold turkey of no bottle. It has been hard but I finally just had to break down and put my foot down. He is either going to drink from a cup and/or eat food or he will get tube feedings. He can't drink a bottle the rest of his life. Each day he has been asking for it less and slowly giving in to the sippy cup. I have to hold it and tilt it for him but he will get there. I think back to how long it took to get him onto the bottle so I just need to be patient. He has been getting more tube feedings until he decides to drink a cup.

I have HUGE news on the eating side though. Two days ago I tried to give him pureed chicken I made for him. Back when we were doing feeding therapy he LOVED to eat pureed chicken and beef but got to the point he was even refusing that. Well he was hesitant at first but then loved it. He was asking to eat and for chicken and even helping put the spoon in his mouth. This is such a big thing for him. Later that evening he asked for it again and ate about 15 or 20 bites of it. He has been showing a bigger interest in eating since taking the bottle away. It is a huge step in the right direction.

Kindergarten starts Wednesday. We are both ready for him to go back to school. Just yesterday we drove by his old one and I really didn't think he was paying attention and he said 'go to school'. I got him all enrolled and his school supplies so he is ready! He will be going from 10 to 1 mon-fri. He will be riding this bus this year which I was hesitant of at first but we now have a plan in place. The school will pay me to ride with him and be his monitor for the first 6 weeks then from there we can all decide if he still needs someone to ride with him and if so they will get a monitor from school to ride with him. He will be riding in this special needs adaptive stroller so he will be nice and safe and no one will have to lift him, which scared me.

I am slowly getting my photography business going. Right now I am just doing free work to get a portfolio together. I know it just takes time and patience but I am really ready to get it going.

Just last weekend we took a camping trip to the mountains with the whole family. It was lots of fun and Blayne really enjoyed the beautiful scenery, outdoors and Colorado weather. Lots of pictures and video to come.

That is all I can think of for now. I hope everyone else had a great summer.

Lots happening

2009-06-10T14:55:00.000-05:00

A lot has happen since my last post. The results are in and his growth hormone levels are low and I am so excited. Not that I wanted them to be low but that there is finally an answer to why he isn't growing. She said anything under 10 is low and his levels where 6.9 and 3.4. He hasn't grown for a total for almost 3 of his 5 1/2 years. Insurance approved the shots very quickly. Now I am just waiting for them to ship the medicine and from someone to come to our apartment to show me how to administer the shots. I HATE that it is a shot everyday but if he needs it he needs it. I have mixed emotions because it will help build muscle mass and I have had many therapists, doctors and nursesher tell me once he gets started on his hormone therapy that they think he will start walking. However if he doesn't start walking and starts growing really fast I have no idea how I am going to be able to lift and carry him. I am already having back problems but we FINALLY got a one floor apartment so no more steps!! I just have this gut feeling that this is going to get him walking because he is SO close. So I am very excited!

We did finally get all moved. It is always a job but I love our new place. It is so nice to wake up and be on a one floor. Blayne really likes our new place too and there is more room for his walker in here. I got things unpacked, put away and organized. I am going to admit it, I really do have too much stuff. I am determined to simplify my life. I am trying my hardest to get rid of things we don't use or need and just live simply. It is a slow work in progress but coming along.

I went to Texas over memorial weekend and got to meet a long time 'internet' friend. I will blog more on this later but I had the time of my life and memories I will never forget. I also did a crash course in photography and learned SOO much. I have found my new passion and calling and I am so excited to get my photography business started. I have been wanting to do this forever and it is finally coming together. Again..more on this later and stay tuned for a photography blog :)

I also have some video clips I am going to be posting so you can see Blayne in action. I can't believe my little boy is 5 1/2. He is out of school and will be starting Kindergarten in the fall. We visited his new school and we both really liked it. I think he will do great there next year. He may ride the bus so that is a bit scary. My 'baby' isn't a baby anymore. Where has the time gone?

Sad news, I will not be getting married in August. I am not going into detail but my boyfriend has some family issues come up so we are putting our wedding plans on hold until it is all figured out. It is funny how you have your life planned and are going along and then God smacks you in the face and says 'I have something else for you'. I just trust everything happens for a reason and things will work itself out. Jason and I are still doing great relationship wise and are still very happy just putting the wedding on hold. We are hoping to get married sometime next spring or summer now.

Well, I still have lots more to talk about but I am going to save it for another day. Hope everyone is having a wonderful summer so far!

Update on things

2009-05-09T16:08:00.003-05:00

Wow, its May. Here is what has been happening around here:

Three weeks ago Blayne fell and hit his head at school. How, I am not sure because I wasn't there, but this is what I was told. They said they were helping him out of his chair and he fell and hit his head. I don't think they were watching him close enough but accidents do happen and I am surprised this is the frist time all year he has gotten hurt. So, that was on a Wednesday. Then by Sunday he was acting really funny. He was grumpy and not eating well. He also was taking naps and he hardly ever takes naps anymore. So by Tuesday I was really worried about his VP shunt malfunctioning so we took him to the ER in Kansas City after talking to his nuerosurgeon on what to do. It was a really long day but after a CT scan and X-rays they said he was fine and his shunt was working.

Two weeks ago we went back to KC to his endocrinologist and they did the growth hormone test to see if he needs to start hormone therapy. It was a 3.5 hour test and the medicine they gave him made him sleep through the whole thing. I am still waiting to hear the results. I was told I would hear sometime this week but I tried following up with them and I still haven't heard. I am really anxious to get the results.

We are finally getting a one floor apartment after 15 months of waiting. I am so excited to move. It is going to be so much easier for me and Blayne. It is going to be a big job but hopefully we will be in this apartment for awhile. This is my 6 or 7th time moving, I have lost track if that tells you something lol. We are going to Texas in two weeks. It was a last minute thought and came together really fast. I will share more once I get back but I am VERY excited. Jason and I are talking about getting married in August. We are going to try as hard as we can to make it happen. I am also really excited about that.

Blayne has been showing a little more interest in food lately. He really likes the chocolate animal crackers in the 100 calorie packs. He also like lucky charms. How do you teach a 5 year old to eat though? He never learned how to chew when he was younger so he has no clue what to do with it once he gets the food in his mouth. He still refuses to let me fed him and hates the cup thing still. He will put the animal cracker in his mouth and just hold his mouth open with it in the middle of his tongue. Then it gets soggy and he will swallow it once it gets really soft but he doesn't chew. It is hard to explain but I will take a video of it. Here are a few pictures of what I am talking about. It is a step in the right direction though and at least he is interested somewhat now. He will ask for 'cookie' or 'cerweal' (cereal).

His last day of school is May 20th. He has been enjoying going so much I have no clue how I am going to entertain him all summer long. Crazy I know, as I never thought we would get here. He is doing really well with his talking and a lot better with communicating although it is still a big work in progress. I was trying to upload some recent pictures but my computer is acting up so I will try again next time.

Healthy again

2009-03-27T08:52:00.002-05:00

Blayne finally got over his cold. He also started back into school this week. He was for sure ready to go back. He got so bored over spring break and was actually asking for school. Crazy I know. He had an eye appointment for a 4 month check up on Tuesday. She was extremely happy with how he is doing and he still doesn't have to wear glasses. She said his eyes are coming more together perscription wise which is good. They used to be really different. One was near sighted and one was far sighted. He was not happy about getting his eyes dialated and looked at though. It took 3 of us to pin the little guy down. He is so strong when he wants to be.

His new thing now is he is really into Winnie the Pooh. It is so cute but at the same time it makes me sad that my 5 year old is just now into Winnie the Pooh. He is also going through the biting stage. It is horrible. I was just thinking not to long ago, thank goodness he never went through that stage. I was so wrong. The other day when he was upset from falling I picked him up to hug him and he bit my chest and would not let go. He bit hard enough to break the skin and leave teeth marks for about an hour. It was bleeding and hurt really bad. He has also been chewing on blankets, his clothes, the couch and his own hands. Besides just acting out biting when he is mad and frustrated I think he just needs the oral input. Maybe that is a good sign so that we can get him to start eating soon. That is still an on going battle.

His original due date is in a few days. March 31st, the day my sweet baby boy SHOULD have came into the world. It is always a sad time for the 'what could have been', although this year hasn't been as bad as the past years. Well, I guess that is about all of the update I have for now. I really need to add some new pictures. Does anyone ever read our blog?? Just curious. Sometimes I don't feel motivated to update it because it feels like no one reads it. :(

growth update and sick again

2009-03-13T16:41:00.002-05:00

Blayne is sick again. We have been really lucky that he hasn't been sick more since he has been in school this year. This is only about his 3rd cold all winter which isn't bad. I thought he would have been sick all the time. This is by far the worst cold though. He has had it about 4 or 5 days now. We had to cancel his PT on Tuesday and school on Wednesday. He has spring break next week so it will give him some time to completely get over it before he goes back. We are both really tired.

I thought he was getting better yesterday but today he has gotten worse. I called his pediatricians office and of course since it is Friday there was hardly anyone there. I just wanted to see if they had any thoughts of what to do or if they could call a prescription in. They said he really needed to be seen but just to take him to the ER just because of his asthma and to be on the safe side. He took a nap and woke up feeling better, although he is still congested in his chest and has a cough. He isn't running a fever. I guess if he gets worse tonight I will take him in.

We went to Kansas City last week to the children's hospital. It was a 6 month follow up with his endocrinologist (growth dr.) He only grew 3 cm in 6 months and actually lost a pound. So the plan is to go forward with the growth hormone shots. We are going in for a 4 hour fasting test on April 30th to test his growth hormone levels and to see what will be the best medicine for him. They said if the hormone measures under 10 the insurance will cover it no question but if it is over 10 we will have to fight them on it since it isn't 'medically necessary' in their book and they are very expensive. He is in the 1 percentile for his age and for my height and his fathers he should be in the 75 percentile. I hate that I will have to give him a shot everyday for the next 10+ years but it will be worth it. I just want him to grow. He is so tiny still.

So little Mr might not be little for very much longer. I am already having back problems so I can't imagine him much bigger and lifting him. The good news is that the growth hormone shots will also help build his muscle and he may start walking. That would be amazing. The doctor said that kids usually start doing more physically once they start the shots.

Some other exciting news is Blayne is starting to read a few words!! I was so surprised when he did it the other day. It is all thanks to his PlayStation 2 Winnie the Pooh Kindergarten game. Imagine that lol. He read the words whale, jar and jam. He has so much in that little brain of his it is just getting it out. He is so smart. He is also learning words with his new leapfrog tag books that I got him for his birthday. He LOVES them and can play with them for hours. He is playing with them right now actually so maybe he is feeling a little better.

Bed Pictures

2009-02-10T14:53:00.001-06:00

I know, I still need to update our blog. I am just trying to find the time. We are doing good since our last post. Blayne is just going to school and we are all trying to stay healthy. He is just now finally not fighting going to school in the mornings. It has made it a lot easier and nicer. Pretty soon the school year is going to be over and it will be summer break and we will have to start all over again. Oh well, we still have a few more months left.
He is doing really well on his talking and communicating. He is just now finally answering when you ask him questions. The other day he was in the cart at Wal-mart and was trying to get out. I asked him what he was doing and he said ‘standing up’. My parents were watching him the other day and they told him not to do something and he asked why. He will ask for certain tv shows and movies he wants to watch (he has also figured out the remote) or video games he wants to play. We still have a long ways to go as far as having conversations but at least we are making progress. He is still about the same on his walking and standing. We plan on working with his gait trainer a lot outside this spring and summer once it warms up. I REALLY want to get him off of the bottle before kindergarten next year.

We are LOVE LOVE LOVING his new Sleepsafe bed. It is so nice to be able to sleep at night knowing he is safe. I thought I would share a few pictures of his bed and a few of his birthday. I know they are really late but better late then never!!!
Oh yeah I was using some new software with the album thing below so hopefully they work on your end!! I am not sure if I like it or not yet but I thought I would try it.

SleepSafer Bed

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The birthday cake I worked so hard on that he wouldn’t eat!!

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My 'baby' is now 5! Bed update!!!

2009-01-07T15:23:00.000-06:00

I know our blog is in desperate need of an update. My computer crashed shortly after my last post and I was without one for while. My family got me a laptop for Christmas so now I am back online. I am still trying to get the old one running to get all of my important files, pictures and everything off of there. So frustrating. Anyway, I will just blog the updates and hopefully get some pictures on here shortly.

A few weeks back I got the flu. It was horrible but thank goodness Blayne didn't get it. I was just sure he was going to get it because I was taking care of him in between being sick. It was SO hard to carry him up and down the steps then. (Yes we are STILL waiting for a one floor apartment)

We had a great Christmas and birthday for Blayne. It was really nice to have a break from school again. It was his first day back on Monday. I was worried how the transition going back would be but he did great. He is doing really well in school. I have been leaving him there and he is doing fine without me there.

Christmas:

We had a really nice Christmas. Blayne got lots of gifts and had a blast opening them.

Birthday:

I decided on a Cat in the Hat theme. He is in LOVE with this book for bed time. I worked really hard on a egg free/ milk free cake and decorated it. Of course he wouldn't even touch it. Oh well, I was hoping and praying and at least I tried. The solid food/ sippy cup battle is so frustrating. He loved half of his gifts but the other half he hated because of sensory issues. I had to take a lot back. I guess next year I will take him to the store to pick his gifts out.

Bed:

YES we now have out bed! It arrived last Tuesday December 30th. The day before his birthday. What an amazing birthday gift. I am still stunned on the generosity of getting this bed. It is so nicely crafted. I can't say enough good things about it. He loves it too. I put him in it once we got it together and I asked him if he thought it was comfy. He was smiling and laying on his tummy and said 'comfy'. He has slept in it a total of 4 or 5 times now. The first few nights were rough but last night he slept all threw the night and slept 12 hours!! It was the first nights sleep I got for a long time. A huge weight has been lifted off of my shoulders.

I usually keep my stuff out of our blog but if you remember a few months back I had given up on the love part of my life. Well, shortly after that an amazing man came into our lives. Things have been great and we are talking marriage. It is crazy how fast things can happen. He is being a great dad to Blayne and so kind and patient. We are truly blessed. We are also talking about having another baby in the next year. It would be wonderful to give Blayne a sibling but I am scared too. So scared of all the 'what ifs' of what could go wrong this time around. I really feel like things will turn out ok in the long run. I will have to have surgery before I get pregnant and I will likely have it some time in the spring of 09.

Ok well, that is it for now. I am going to work on getting pictures up and re designing our blog.

Back to School

2008-12-01T21:15:00.002-06:00

It was time to go back to school for Blayne today. I must say it was nice to have a break from school last week. It is so good for him but I am so tired of fighting him going. I guess he has gotten better but it still isn't just lets get up and go and drop off at school.

I can't believe it is December and this year is almost over. My little boy is going to be turning 5 on December 31st. It just doesn't seem possible. I think we will more then likely have a Wall-e birthday this year because he is a HUGE fan of it. He waited since July for it to come out on DVD after seeing it in the theatre. The day it was released he knew because of commericals on tv and me telling him and he kept asking all day. He had his eye appointment and PT so I told him he had to be good all day and we would go buy it when we were finished with everything. He was SO good all day. The best I have seen him in awhile actually.

So I know he understand and even though he has a lot of vocabulary his speech isn't the best as far as communicating and responding when you talk to him. His therapists have been talking about using a communication device with him which is a little push button thing with pictures so he can communicate more. They think it will cut down on his tantrums and frustrations. Other then that we are just getting ready for Christmas. I am looking forward to break again! LOL

colds again...

2008-11-25T15:22:00.002-06:00

Blayne and I are sick with head colds. I guess it is that time of year and so far (knock on wood) we have been pretty healthy. I just hate when he gets sick. His asthma has been doing pretty good with this one though, thank goodness. I only got about 3 hours of sleep last night between coughing and Blayne so I am TIRED today.

He had an eye check up last week and she said he is doing just wonderful. That is always good to hear. She is still happy he is playing his video games and said it is great for his eye-hand coordination. So at least it is good for something. I swear my child is a video game junkie. Since he was sick on Monday he missed school. We have just been hanging out at home.

Thankgiving Thursday with the family and Christmas shopping Friday. Fun stuff!

Prayers Have Been Answered!!

2008-11-07T00:08:00.003-06:00

As, you can see I updated our layout. I was getting kind of tired of the old one and it was too dark. I thought it was time to brighten things up a bit.

Ok well, I have some amazing news. Through the generosity and kindness of others and after many tears and prayers, we are getting Blayne's sleepsafe bed. I cannot say how this came about, but I had to share the news. I will not have to spend a penny on it. I am so happy and words cannot describe how greatful I am. It still doesn't feel real that it is happening but the order was placed yesterday and it should ship in 6-8 weeks. I am so excited and can't wait to get it. I know that Blayne is going to love it. I am so looking forward to getting a good night sleep for once. It feels like an incredible weight has been lifted off of my shoulders. This is going to change our lives dramatically. I finally see an end in site to this whole thing and it is incredible. I guess all I have left to say about this is, there really are good people left in this world. What a blessing.

School has been up and down still. I have trained all of his teachers on how to use his asthma medication and epi-pen. They were short on help so I hadn't left Blayne alone yet. They just got some new paras so I think the plan is to take him into the classroom and get him calmed down and then I will leave for the hour and a half he is there starting next week. It is going to be so nice to be able to run down to the store and get groceries while he is there and then come pick him up. I don't mind taking Blayne with me but it is so much harder and he hates it. Plus cold and flu season is right around the corner. I got my flu shot but Blayne still can't get one because of his egg allergies.

I am heading to Colorado next week to see a specialist. I will leave Blayne with my parents because it is such a long drive for him and I will only be there a few days. I hate leaving him but it is nice for him to have some grandparent time and for me to have a little break. My grandma and aunt are taking me. I have a lot of issues and pain now from what happen with the birth. I am more then likely going to have surgery. I am just way to young to have this problem and would love to have another baby someday. I just want to make sure I get a good opinion before I have surgery. I don't want someone to make it worse. My grandma has seen her gyno for over 30 years and has also had surgery there so that is why we are going clear to Colorado for it. We will stay with my dad so it will be really nice to spend time with him as well. Ok, that is all for now.

So tired and frustrated

2008-10-29T16:55:00.004-05:00

Today was another rough day at school. Monday he was so tired that I couldn't get him up for school so he missed that day. My cell phone broke the day before so I had no way of calling the school to tell him we weren't coming. I felt terrible but he needed to sleep. I am at my wits end with the sleeping. I have tried EVERYTHING to try to get him to go to sleep at a set time. He will be tired but it takes him hours to fall asleep. I want to get him on a set schedule so badly. I have tried rocking him, singing to him, laying down with him, not laying down with him, reading him stories, adjusting the temperature of the room to warmer or cooler, putting color changing lights in with him, everything you name it. It takes HOURS to get him to finally give up and go to sleep. Since getting his tonsils out he sleeps so much better once he gets to sleep it is just getting him to sleep. I thought the surgery would help that too but it hasn't.

Last night I gave him a bath at 7:30 and he was in bed by 8:00pm. He was tired and I was just sure he would go to sleep. No such luck. Again, I tried everything I could think of. Finally after reading him The Cat in the Hat twice he was finally laying still and just about asleep. I thought thank goodness, I can sneak out and go downstairs to get his meds ready for the morning and his feeding set up for night time. I did all that and came back just sure he was asleep and he was wide awake trying to get off the bed. So I laid down with him for another hour. Looking at the clock it was 10:00pm. Finally I was so frustrated, tired and exhausted I just broke down. I was crying and begging him to go to sleep.

What else can I do to fix this? The truth is he needs his own safe bed and room. It would be amazing to put his PJs on him, read him a story and leave him in his own room in a safe bed to go to sleep. I think he is frustrated too. He loved the security of his crib when he was able to still sleep in it. He would always ask 'in your crib' to get in it. I take care of him all day and he is exhausting and has a lot of needs. I love being his momma but I NEED to be able to sleep alone at night. I don't sleep sound with him in my bed. Knowing his feeding is hooked up and tangled around everything, he pulls my hair all night too because it is a sensory thing for him. He rolls all over and I usually ends up sideways in the bed. I am left with just a tiny spot on the edge. He would sleep a lot better alone too. We are still fighting to try and get the sleepsafe bed covered by insurance.

School is such a good thing for him. I already see it helping his development. Today this little girl that sits next to him in circle time was helping him do the movements and when they were getting ready to leave she was holding his hand. It is so cute to see him observe the other kids. He is talking so much more now and interacting to different activities they do. They have a dinosaur puppet that they say good bye to. They say 'out the door dinosaur' and they all shake his hand. He says it SO clear, it is so cute. He has been saying all day today. He is probably the oldest one there but I try not to compare him. When I start thinking that I have to tell myself to stop. I just hate fighting him going all the time. It would go so much better if he slept well. I am just so incredibly frustrated and ready to go crazy. I hate feeling this way. Ok, just needed to vent all that.

Enough of that. I forgot to put in my last post that Blayne is back to drinking out of his bottle. We are still working on the cup but at least he is back to taking his bottles. We are still working on the potty training too. We are STILL in a 2 story apartment though and it is so hard since the bath room is upstairs. This was supposed to just be temporary but it is going on 9 months now. It is killing me physically to carry him up and down the steps and I swear I am going to get a hernia.

For Halloween he is going to be a furry green monster. I will take lots of pictures. Since I haven't put any up for awhile here are a few I found back from May and June of this year. I have been so horrible about keeping up with pictures this past year. If something happens to my computer I will lose them all. I seriously need to sit down and burn them all to CDs. So much has been happening though and I am so tired. Oh well, someday it will get done!

Standing alone!

2008-10-24T10:01:00.003-05:00

Wow it has already been almost a month. Things have been crazy here but are finally slowing down. My sister got married on October 11th and it was amazing. I made the cake which was a huge job and I was very nervous but it turned out great and everyone loved it. I am so happy that she found someone and they can live a life together. Her stroke has set her back in so many ways but she is doing great considering everything. I can't believe she is only 25 and has had so much happen to her. My family and his went on a cruise with them this week. Blayne and I were left to house and animal sit, wonderful lol.

I have some big news with Blayne. He is now standing on his own!! He did it for the first time on October 5th. It was completely unexpected and I was totally shocked. We have been working on it for awhile but he hasn't been able to do it. We were in the living room and the other day and I stood him up after changing his diaper and let go of him and he just stood there for like 3 minutes! He has done it several times a day everyday since then. I think it is just a matter of time before we have steps!! I am so excited and proud of him. I want to get some pictures of him doing it but haven't had a chance to yet.

I have been taking him to the morning class at school. It has been rough and hard for us both. Since his tonsil removal he sleeps really well once he goes to sleep but it is still hard getting him to sleep and on a schedule. I am trying really my hardest and doing everything I now what to do to get him on one. When he gets enough sleep he is SO happy but when he doesn't he is so difficult. We REALLY need a sleep safe bed for him. I called to follow up on it again but the guy was out of the office all week. If you remember we were trying to make a bed for him. It never got finished because of the wedding stuff so we are still struggling with night time. He NEEDS his own room, space and a safe place to sleep. I need to so badly too. I am so tired all the time. It is exhausting.

If he doesn't get enough sleep before school he has HUGE tantrums taking him to the car and half way driving there (about 10 minutes). Then once we pull up to the school he melts down and I struggle to get him out, the whole time he is yanking my hair with all of his strength. Then we get to the doors and get in and he still melts down. I try to calm him down and so does one of his therapists and then we get in the class room (again still crying). They take him from me and we walk down there, he is now pulling his therapists hair and knocking off their glasses. I feel terrible when he does it. Once we get him in there and calmed down he loves being there. I just don't get it. Again I think the sleep thing is a big part of it. Oh well, I guess we will just keep doing our best and maybe one day we will have a bed for him. :(

There are mixed things about each class that I like. The morning class is MUCH calmer. The kids are so sweet and there is a little girl much like Blayne physically. One little boy seems to be autistic and the dad stays with him the whole time. The other little boy and little girl are pretty normal just maybe speech delayed? I am still trying to figure it out. They are all a little younger like 4 ish. The thing I don't like about the morning class is none of the kids really talk much. In the afternoon one a lot of them talked and I really noticed a change in Blayne's talking and communication. I still see him improving but it would be nice to have a few that talked really well in the morning class. It is hard getting him up and ready and driving him there early in the morning when he doesn't sleep enough. At least by the afternoon he is some what awake. So we are just going to keep trying the morning class and figure out which one is best for him. I still haven't left him there yet.

We got the results back from the endocrinologist and his growth hormone level is normal. I was really surprised but I guess it is a good thing. I was just hoping there would be a way to 'fix' his slow growth. They are still going to follow him closely since he is short stature for his age. We will go back in 6 months to see her again. He also had a GI follow-up regarding his colitis. She thinks that it is just a temporary thing that won't be ongoing although they will watch that closely as well. That being said though in like 3 weeks from that appointment he grew an inch and lost 2 lbs. The weight loss is a good thing because he was overweight for his height. He is now 39 inches and 36lbs 4oz. I think that contributed to him standing unassisted too. I can't believe he will be 5 in a few months it is crazy!

School

2008-09-29T10:41:00.002-05:00

School:

It has been a slow start for Blayne but he is doing really well. I think it is going to be a great thing for him once we get him in a routine. It is exhausting though and our schedule is always so full that sometimes I just get burnt out. I have to drive him to another town for his school and with gas prices it is just killing me.

I am seriously considering moving to that town because it would be so much easier. Plus my sister will be living there after she gets married so I know she would love to have me there. It is only 20 miles from here so it isn't bad. One of the teachers told me that they could bus him there but NO WAY. I am not putting my baby on a bus. I have heard to many bad things and he would be really scared so that is out of the question. Can you tell I am over protected? lol

Like I said I think school is going to be great for him. I trust everyone there and he likes his therapists. So far I have stayed with him each time because he is getting used to it. He has also had a bad cold two times now so they wanted me to be there if he needed medicine. He is slowly getting used to me not being there and I can just sit and watch across the room now.

He is going in the afternoon class right now and there are about 9 kids plus Blayne. None of them are physically handicap they are mainly just learning/behavior problems and delays. There is one girl in there that has a lot of needs and she is always yelling and upset and crying and he hates it. It is really loud in there. I get overwhelmed so I can only imagine how Blayne is feeling. So I am going to try to take him to the morning class this week. There are only 4 kids in that class and two of them are physically handicapped they are also a little younger 3 1/2 ish/ 4 years old. One is in a walker like Blayne and the other is 'really involved' is all I was told. It is also a lot quieter they have said. I would like him to be around a few other kids that are motor delayed as well so Blayne fits in more. I can tell he is going to be sick all winter from school but it is something that we have to deal with. It was bound to happen eventually. As much as I want to keep my baby in a bubble I can't :)

It is bittersweet watching Blayne in his classroom. He is growing up and still so delayed. Don't get me wrong. I am thankful everyday for how smart he really is and the things he is gifted in and can do. It has always been hard having him around 'normal' kids because it is a slap in the face of how behind he is. I thought having him around other kids like him would be easier but it really isn't. Seeing a classroom full of delayed kids wakes me up to the reality that my baby is going to be in special ed for a long time to come. It is a hard thing to let sink in. see all those kids with problems and I just think 'why these precious innocent children?' life just isn't fair sometimes.

They always say 'most preemies are all caught up by kindergarten' well Blayne is almost 5 and no where near caught up. I always thought he would be in a normal classroom and one of these years he might be, but it doesn't seem to be anytime soon. I always dreamt of watching my baby walk in to his first day of school even if he was walking slower and in his ankle braces but going to kindergarten. Anyways, it just seems like there is always something to grieve as he gets bigger and we face different challenges. I am just facing another one now :(

He still isn't drinking by mouth. I will update more on the health/ doctors appointments later. I need to get him ready for school today. Stay posted. . . . .

Update on the tonsils

2008-09-09T10:49:00.003-05:00

The tonsil surgery was a lot harder then I thought it was going to be. They said it would take 7 to 10 days. He went the full 10 plus some. He was miserable and so mad at me for taking him to the hospital he wouldn't let me do anything with him for about a week. Another thing I am really upset about is, before the surgery he LOVED his bottles. Now he won't even drink out of that so we are going to pretty much all tube feeds. We did the surgery to help him eat and it made it worse. It is so upsetting. Maybe he is still healing as it will be 3 weeks this Thursday. I am trying to be patient but it is hard. On a positive note he is sleeping better and not snoring anymore.

We got his results back from his scope he had prior to the surgery. He doesn't have EE so that is one less thing to worry about. He does however have colitis of the bowels and inflammation in the upper part of his stomach. They put him on some medications that I have to give him 3 times a day and it is orange and stains like crazy, yuck. We have to go back to Kansas City on the 29th to see how he is doing on them and to see if they need to change anything. We also go on the 17th to see the endocrinologist.

Another thing is he starts school tomorrow! I am excited but a little concerned because he came down with a pretty nasty head cold yesterday. I hate this time of year with the sickness coming out. I know he is going to get sick a lot in school too but I guess we will just have to deal with it. It is time and I think it will be good for him. He will go 2 days a week to start out with from 1:00-3:45pm. I am actually really looking forward to a little alone time to get some grocery shopping done or just have some down time.

Other then that just finishing up wedding stuff for my sister. It is coming up really fast!! Well, I guess that is it for now. I will update how school goes for my little man!

A down day

2008-08-19T16:46:00.004-05:00

Well, last weeks procedure went well. It was a long two days and very messy but he did well. He had to have a clean out the day before so he could have the colonoscopy and gosh it was a mess. I hope we never have to do that again. I think he had a total for 7 baths in 2 days...yuck. They didn't see anything visually wrong but they took biopsies of the tissues in his throat to check for the eosinophilic esophagitis (EE) . If the EE is really bad they can sometimes see it with the visual eye but didn't on Blayne. No narrowing of the throat was seen either so that is good. The colonscopy looked good too. So we are just waiting on the EE results. Here is a link to read more about it if you want. http://www3.niaid.nih.gov/news/newsreleases/2006/ee.htm

Basically it causes inflammation in the throat with the certain cells. Even though you can't visually see it they will look to see under a microscope if those cells are elevated. Even though nothing looks wrong, if he has this it can make it uncomfortable to swallow which may be why he doesn't want to eat.

Here is a cute picture from that day when we were waiting. He was so hungry by that point and wanted a bottle. I gave him a sticker to get his mind off it and he stuck it on his lips and just slumped there and sat.

So Thursday is the tonsil surgery. I am ready to get it over with. I am really glad we are doing it though. my cousins little boy just got his out and he started eating like crazy after. He gained 7 lbs in 2 months and grew a lot in height as well. Also when kids with tonsil problems sleep they never get into a deep REM sleep pattern. It is in that stage where they release growth hormone so it may help him grow in that way as well.

We are also seeing the endocrinologist next month to check his growth hormone though. We talked to a dad while we were waiting at the hospital and they said they put his 10 year old on the growth shots last year and in one year he grew a foot and 3 inches!! His feet grew a lot too. Maybe that will be the case with Blayne too. He is still so little now.

Last thing. I talked with another law firm today about our case regarding the birth. This was my last firm and avenue I knew to take with this and it sounds very likely they are turning it down. She said she will try to find another firm in my area to review the birth injury aspect. This aspect was about the bruising caused from the birth causing his jaundice that may have caused some of his brain damage. We are still waiting to get the final word from a doctor before they rule it out completely. I really don't understand why they talked to me about it before the doctor reviewed everything. I guess I shouldn't get too down until we hear from him.

Every time this happens I know and I am prepared for them to say no but it hurts so bad each time. Blayne was in therapy today while I was talking to them and at the end they lady said 'well, I am so sorry. I know it is hard because you have this little guy that has all these needs' I just started bawling. I can go and be fine for awhile and then just have a break down day. This was one of those days and she caught me at the right time. It just isn't fair what happened with the birth and I really wish we could sue the hospital. I told her I was 17 when this happened and it is SO hard. I am a single mom and my son needs all this equipment I can't afford and it just doesn't seem fair.

I know that him coming so early wasn't preventable because his sister died while I was pregnant but if he wouldn't have had the birth trauma and a doctor would have been present to make some different decisions he might not have ALL these problems. That is what we will never know. No law firm will take it because it is so hard to prove and it will cost a lot of money and time for them if it isn't a for sure thing. I get that but what happened was SSOO wrong. No one else was there at the time of the birth. It was the most horrible thing ever and will haunt me until I die. That is why I want to sue so bad.

I keep telling myself that even though we aren't going to get a settlement over this that Blayne is doing really well and it could be a lot worse. I just need to be thankful for that and realize I did everything I could in regards to suing. Blayne is happy and loved and this is all that matters. Please just pray for peace with the situation. It is very hard for me.

Anyway, I will let everyone know how the tonsil surgery goes. Please keep us in your thoughts on Thursday.

Off to KC

2008-08-12T00:01:00.002-05:00

We are heading to Kansas City tomorrow afternoon. Wish Blayne luck with the procedures and going under anesthesia. I will update when we get back! Oh and just since I hadn't put a new picture up in awhile, here is one of my little gamer boy!!

SleepSafe Bed

2008-08-08T16:07:00.002-05:00

We started working on all of this last August. It has been a whole year trying to get this bed covered. I am so frustrated. The DME (durable medical equipment) place is still working with insurance trying to get them to approve it. I was really hoping to have it before school started and get him on a sleep schedule. I don't know what we are going to do if we can't get this covered by insurance. I have no idea how much longer it is going to take either to get the final denial or approval.

Oh well, we still don't have a one floor apartment and I have no idea how much longer that is going to be until we get a one floor either. There is no way I could get the SleepSafe bed up the stairs there. Orginally they thought it would be a few months but it is going on 5 months since we have been in the two story. We have been staying at my parents house more because the upstairs gets so hot there and Blayne is always wanting to go up there. I then have to carry him down and it is killing my body. I also can't afford the electric bill with the air running all the time and it has been REALLY hot here lately. Anyway, enough complaining.

My mom and I are going to try and build a crib for his twin size bed tomorrow. This will work if and until we ever get the sleepsafe bed. I don't want it to look to babish, that is why I really like the sleepsafe bed plus it has the adjustable mattress, but at this point I just want something for him to sleep in. Women working with tools is always scary though. My mom likes to think she knows what she is doing but she doesn't have a clue really. I keep telling her we should just take the wood we have bought to someone to build it for us. She swears we can do it so we will see. I wish my grandpa was still alive. He would have had it built for us in a heart beat. My mom and I both have a hard time asking for help and when people offer it to us we don't know how to take it because we are so used to doing things on our own. I call my mom super mom because she does so much. I always say, well why don't we do a fundraiser for this or that for Blayne's equipment and she never wants to do it and I don't want to do it alone. Ok, I said I was done complaining. I will keep you updated on how it goes!! Wish us luck!

Procedure Dates

2008-08-04T14:09:00.003-05:00

We have dates finally for the procedures. August 12th and 13th is when the endocoscopy and colonoscopy will br preformed. The tonsil surgery will then be on August 21st. He will also have an ABR hearing test done while under for the surgery. After he is all healed up from the tonsil surgery he will start pre-school! I am not ready but it is time for him to go. I think it is going to be a good thing for him. I am not looking forward to driving him 20 miles one way for school but there is no way I will send him on a bus!! I have heard to many horror stories about it and I think Blayne would be too scared to go without me.

Lets see, other then that we are just trying to stay cool from the heat. We have been staying with my parents a lot recently because my apartment is so hard to keep cool. We are still waiting for a one floor apartment but in talking to a neighbor it sounds like one might be available by the end of the month. I really hope so because I can't keep carrying Blayne up and down the steps in our apartment now. My next door neighbor fell down his steps and broke his arm a few weeks ago. That tells you how step and dangerous they are!

Eating orally is still about the same. We are still working on sippy cups with no luck. I was hoping to have him off of the bottle by the time he started school but as it is going now he won't be. Such is life I guess. At least he can drink from the bottle and if other people don't like it oh well. His walking is still about the same too. He is doing well with his gait trainer but he still prefers to army crawl because it is easy and he can do it faster. We haven't used his tricycle much lately because it has been to darn hot!!

We have been really busy working on my sisters house and final wedding things. The date is going to be here before we know it! October 11th! Anyway, I will update once we have his scope done.

We are back and exhausted

2008-07-16T21:53:00.004-05:00

Well, sorry it has taken so long to update. We got back but have been completely exhausted because we have had several appointments since then. So let me fill you in. *Warning: Its long!*

Denver:

It was a nice little vacation it is was great to see my dad. The plane trip went well although I have come to the conclusion it isn't easier then driving. We had SO much stuff to carry on. I had all of his formula, feeding pump, portable DVD player and all of his medical stuff. I didn't want to check it and lose it. We also had to carry his car seat through the air port and push his stroller. My mom also carried on her vitamix blender so we could make the food to take to the clinic. If any of you have those, you know how heavy they are. It was just me and my mom and Blayne. We were so tired when we finally got to the gate. We fly standby so we missed the first flight and had to wait 3 hours for the next one. Blayne was very good though. I am not sure he understood we were going to fly. We got to ride first class though so it was nice. He did great except for the take off. It was too loud for him. He looked really confused when he saw us going through the clouds. I have a few pictures but they are on my mom's camera

Feeding Clinic:

I really liked the Denver Children's Hospital. It was very nice and organized and on time! The people were also very nice. I was very worried Blayne wouldn't be up for our appointment since we had to be there by 9am but thankfully he got up early that day and we made it. I was hoping for a 'miracle cure' to happen and all of a sudden they could get him to eat. I knew this wasn't going to happen though. I don't feel like we got any farther with the feeding but we got a lot of good medical information. Here is what happened:
There was an OT, Speech Therapist, Nutritionist, and Pediatrician. They watched behind a one way mirror as we tried to get Blayne to eat. Of course he refused since we were in a new place and he wasn't in the mood. They did however see how he asks for and eats playdoh.

I am not sure if I have mentioned that or not. He will not eat food but he eats playdoh like crazy. I make him homemade most of the time so I know what is in it. I don't like it but you can't stop him. They recommended making stiff mashed potatoes and put it in a playdoh container. Anyway, back to the evaluation.

The nutritionist suggested changing his formula to Neocate Junior since it is more suitable for his age. She also told us how many calories to feed him in a 24hour period (something I was lost on)

We spoke mainly with the pediatrician. She said that she wants use to do a 'clean out' for his constipation. I know TMI there. This is something we fight with Blayne. He can do DAYS without a BM. She explained how to do that.

She also said that looking at his records and growth charts that we can get him to gain weight but he doesn't grow much in height. Seriously he has grown about an inch and a half in about a year or longer. He isn't even on the charts for height. She said that since he has hydrocephalus they see it a lot of times in these kids that they have a low growth hormone. Growth hormone is also responsible for your muscles. Blayne doesn't have any, his arms and legs look like a baby still. If you squeeze them they are squishy. Only way I know how to explain it. Anyway, if this is the case he can get hormone shots and this might help him gain strength to walk!

Her next concern is that with his history of severe reflux, vomiting and food allergies, asthma and eczema he may have a condition called Eosinophilic Esophagitis or EE for short. Here is what that means:

Eosinophilic esophagitis is characterized by the infiltration of a large number of eosinophils, a type of white blood cell, in the esophagus. Eosinophils are an important part of the immune system, helping us fight off certain types of infections, such as parasites. A variety of stimuli may trigger this abnormal production and accumulation of eosinophils, including certain foods. Eosinophilic esophagitis means eosinophils infiltrating the esophagus, –itis means inflammation

So basically it means that is may be contributing to him not wanting to swallow foods. To test this he has to be scoped and biopsied to look for elevated eosinophils.

Home Appointments:

So we got home and hit the ground running with appointments. He had an appointment with the ENT to evaluate his tonsils. He will be having a surgery shorty to have them removed. I hate that he has to have another surgery but the doctor thinks it is going to help his sleeping a lot and it may help with the eating as well.

Last week we went to Kansas City (3 hours drive one way) to see the GI clinic. They gave us more instructions for his 'clean out' for constipation and so far it has worked. We also saw a nutritionist there and she said to keep him on the formula he is on, Neocate ONe + because it is made for kids up to 10 years old. She thinks the other nutritionist in Denver was thinking he was on Neocate infant. Who knows but I don't want to change a good thing and he is doing wonderful on it. She told us to give him 300ml of extra water in addition to his formula a day. No one has ever told me that. It should help with his constipation as well.

This week we went to Kansas City again to have an upper GI done to check his fundo to make sure nothing has changed and to see if vi sable narrowing was shown on it. Everything looked great. So now we are waiting to get his tonsil surgery scheduled, the endocrinology clinic to call with an appointment (they said they can't get him in until sometime in September), and to get his endoconospy and colonoscopy scheduled. GEEZ: if you made it this far I am amazed. Sorry that was a lot to take in. Needless to say we are exhausted. He his PT tomorrow and then I will have to make follow up calls with these clinics because I still haven't heard back from them.

One last thing: We took Blayne to see the Wall-e movie. That was an experience I will have to blog about next time. He LOVED LOVED LOVED it. Since then he has been all Wall-ed out with clothes toys, bedding, just about everything. He has never been into a movie like this. Like I said I will blog more next time! :)

Leaving tomorrow AM

2008-06-27T18:30:00.002-05:00

We are leaving tomorrow morning for our trip to Denver. I have a million things to get done a lot of packing to finish. We got a new car seat. We ended up going with a True Fit one. I am really impressed with it and Blayne seems to love it. I will take pictures shortly so everyone can see it. We also got his new DAFO braces. Now we are on the quest of finding shoes to go over them. That is always a challenge. He is standing much better in them though.

Well, wish us luck! I will post when we get back from our trip. Hopefully my little man will be eating.!!

Denver Feeding Clinic-Finally

2008-06-18T20:45:00.002-05:00

We had a bit of an emergency with Blayne’s G-tube last week. The balloon in the button popped and the whole thing came out. It didn’t hurt him or anything so he just kept playing. I didn’t realize what had happened. About 15 minutes later I picked him up and I saw that there was just a hole where the g-tube had been. For those of you who don’t know, the stoma (the hole) in his belly closes really fast. I was alone and couldn’t pin him down and get a new button in. I was freaking out thinking he was going to need surgery again. So, I was able to get a Foley catheter tip in it and taped it securely and took him to the ER.

We live in a small town and his GI doctor is 3 hours from here. They didn’t realize that the longer it was out the more it was going to close and all the nurses were slowly doing his paper work. Finally I said, can you please just get our doctor in here and we can finish the paperwork after. They listened to me thank goodness. So Blayne was tired and almost asleep and that combined with the catheter tip being in for about 30 minutes we were able to get the button right back in. What a day that was.

Weight issues: Blayne got to be a little overweight for his height. His PT was really worried about it. She said it was really starting to affect his walking skills and it was making it harder for him. She said that if we don’t get him walking by 5 or 5 ½ it is going to make it a lot harder to get him to walk independently. So she is putting him back in DAFO braces from his ankles and we backed down on his feedings. I have no clue what to give a non-mobile child for calories. I feel so alone with that whole thing.

We are going to Denver on July 2nd to take him to a feeding clinic. Hopefully we can get him to start eating some solid food and/or drinking out of a sippy cup or straw. I am really excited for what they have to say and offer us. We have been waiting to be scheduled since March when I sent all of my information to them. I have just sat and waited because I heard it took a long time to get in. Well, someone called me to see if we were interested in their clinic. Turns out they lost my packet of information. We could have already been there by now..UGH. Anyway, we will be flying which will be a lot easier for all of us. This will be Blayne’s first time on an airplane. We are also going to take him to the 6-flags there so the whole thing should be fun.

I took him to an ear specialist to evaluate his hearing better. It is for our lawsuit and all that so I won’t go into it too much. We know Blayne can hear though but he may have a very mild hearing loss in one ear? He referred us to an ENT to look at his tonsils. He is more than likely going to need them taken out and while he is sedated for that they will do a specialized hearing test. I really want to know what that will show.

Another thing we are dealing with is the base of his car seat broke. We have had it for about 3 years or so and he has used it a lot. I few months back before all this happened I bought him a Britax Traveller Plus special needs car seat. I have an older car that doesn’t have the latch bars or tether points. There is just no way to install the darn thing in my car. I have tried and tried. So I am trying to find him a new car seat. He needs to be slightly reclined but he is too big for rear-facing. I need it to hold to at least 65lbs. All the ones in the store only go up to 40lbs, a few 50lbs but after that you have to go to the booster-seat belt combination ones and they don’t support or recline enough. We had a Britax Marathon before so if worse comes to worse I will get him the same one. I just would like to get one that holds him longer as he gets bigger because he will be in a car seat for a while. I have narrowed it down to two of them. The Sunshine Kids Radian 80 (holds up to 80lbs) or the Recaro Signo (holds 70lbs) I just want the one that will recline the best in forward facing mode and fit will in my car. If anyone has any experience I would love the advice. If I am going to be paying $200-300 on a car seat I want the one that will work the best of us. This is were my birthday money will be going so I am glad that I have the extra right now to buy him a nice car seat!

I just turned 22 on Monday. I keep telling everyone I want to be married before I am 30. I want to have more kids too. I know I am still really young but the dating thing just hasn’t worked out AT ALL. I guess good things come to those who wait. I know it will happen eventually. My dad is taking me on a cruise in September. I have never been on a big vacation before so I am really excited.

My sister is getting married and the date is set for October 11th. The way her and her fiancé met was a total God thing, no doubt about it. He has a right-brain injury from a car accident when he was 17. My sister has a left-brain injury so between the two of them they have one good brain... LOL.They are so good together. Things she can’t do he can and things he can’t she can. I am so happy for her. I know she was afraid of being alone forever. So we have been planning all the wedding things. I am making the wedding cake so I have been practicing and testing different recipes. That isn’t a good combination with dieting. I would like to lose 10 or 15 lbs before I go on my trip!

Mini vacations

2008-05-21T22:42:00.005-05:00

I have a few things to update since my last post. Two weeks ago we took Blayne to Kansas City (3 hours from home) for his 6 month neurosurgeon check up for his hydrocephalus. His shunt is working great and his doctor thought this was the best he has ever seen him . He was really happy with his development, talking and interacting. We don't have to go back for another 6 months and after that appointment it will be every year unless a problem arises. We stumbled upon an amazing outdoor mall while there and had SSOO much fun. There was a restaurant called the T-Rex cafe. Blayne had a blast in there. He was mesmerized the whole time at the surroundings and sounds. I was worried it might be too loud for him but he did great. The food was wonderful too (although a bit pricey) Ever since our visit there he has been into dinosaurs. We stayed overnight because Blayne was too tired for the drive home. If you remember awhile back I posted about his attachment to the duck puppet. We have to take it everywhere and he sleeps with it. Well, it got lost in the bedding that night and we forgot it. We got home and he started asking for it and I took everything apart in our house trying to find it. It was NO WHERE to be found. That is when I realized we forgot it there. I called the hotel and they found it and saved it for us. It was a LONG week with out his 'quack-quack'. Thank goodness we got it back.

So back to the T-Rex restaurant. It was so amazing I had to share more about it. Here is information about it as well as some pictures! (you can also look it up on YouTube)

The T-Rex Cafe at the Legends in Kansas City, Kansas is the first in what may become a chain of restaurants. The second will open at the Downtown Disney's Market Place in Orlando, Florida in 2008. The theme of the restaurant is dinosaurs, ocean, ice age and fire.

The exterior of the large restaurant has plants, water, smoke, and several dinosaurs. The largest feature is the 125' long skeleton of an Argentinosaurus. The T-Rex Cafe interior is filled with giant creatures from dinosaurs, to mammoths, to nautilus, to an enormous octopus that looms (and moves) above much of the dinning area. The sound level is always high at the T-Rex Cafe, and some may find the noise of the periodic "meteor showers" to be a little too much.

T-Rex Cafe is worth visiting, even if you are not ready for a meal. In addition to walking through and viewing the many moving creatures, there is a large gift shop with a Build-a-Dino, and the Paleo Zone where you can pay for your children to dig for hidden fossils or pan for precious stones.

The following week we went back up to KC for a little mini vacation with my grandma, aunt and mom. I was so excited to get away for a few days. The first day was a disaster!! We drove all the way up there and got off on the exit to go eat at the T-Rex again so my g-ma and aunt could see it and since loved it so much. We had drove 5 hours with this car with no problems and then out of no where we break down. So picture this, my aunt it a bad diabetic, my grandma is in a back brace from her long recovery of scoliosis surgery, we have Blayne with all of his equipment and car seat and my mom and I.

We called triple A and they said it could be 2 hours before a tow truck that could fit all of us could make it there. We were SO close to where we needed to be going that we could see it. Some nice man stopped with his little boy and took my mom and I to get some fast food because by this point we were starving. So we get sonic (which was cold when we got it) and then once we get back we see the tow truck arriving. They were very nice brothers from Peru and so kind to us. However, they could only fit us two at a time in the tow truck. They took us in several trips down to a McDonald's nearby. We then called a taxi that could fit us all and waited. Here we are at 9:00 at night in McDonald's with all of our luggage and Blayne's car seat.

The taxi finally arrives and it is an old van with an older hippie couple. They were playing really loud oldies music too. It reeked of cigarette smoke and we couldn't get Blayne's car seat to fit in it. We finally got it to make do but I was holding onto it for dear life. Every time we would even slightly turn, we would all go to one side and his car seat would slide. I was praying to God that we wouldn't get into a wreck. It didn't feel safe at all. So we finally make it to the hotel to wait for the tow truck so we can get the rest of our luggage. I couldn't sleep that night because all of my family was snoring (including Blayne) and I only had 5 hours of sleep the night before. So at 3am I went to the front desk and paid for my own room.

The next day my mom had a quiting show/classes that she had paid to do and was so excited for. We didn't have a car so she walked 3 miles (all uphill) to get there. She didn't tell us until after the fact though. My aunt, gma Blayne and I waited in the hotel room to hear about the car. I had a 1:00 appointment to get Blayne's pictures taken. So at 11:15 we finally hear back from the shop and they couldn't find ANYTHING wrong with the car. They just charged the battery and it was fine. So at that moment we realized that it was God's way of getting us off of the interstate that night. We all feel like something would have happened if we hadn't of broken down.

So long story short the rest of the trip went well. I got Blayne's pictures taken and we got to go to a casino and spa. It is rated 8th in the world for hotels. I had never been to that nice of a hotel and it was AMAZING. The bathroom was so cool. We all where so excited over the shower. Can you tell we don't get out much?! The food there was wonderful too. I have more to blog about regarding Blayne's therapy issues and weight but I am calling it a night and will blog the rest tomorrow. Here is a quick look at one of Blayne's newest pictures!

Sickness

2008-05-01T18:53:00.003-05:00

UGH,

Blayne and I have been sick ever since my last post. We never got over the first cold when the second hit and it has been a bad one. Luckily it hasn't seemed to bother his asthma to bad or go into his chest but he is majorly congested. It has made the sleeping situation even worse than before. We are both seriously sleep deprived. I finally feel a little better today but I am a few days ahead of him with it.

Other then that not much to update. We are still waiting for a one floor apartment. I am hoping maybe by the time school is out people will move over the summer. We are still working hard on potty training and he asked for the first time today to 'go potty.' I was so proud of him. He is doing wonderful with communicating and speech. Just taking one small step at a time!!

We have new wheels...

2008-04-15T23:07:00.004-05:00

...and no its not a car (oh how I wish). Blayne's walker finally came in. He walks so good in it.I think it is really going to help his skills towards walking independently. We got the snug seat crocodile gait trainer. It has anti-tippers on the back and even a little seat to flip down so he can rest when he is tired. This is the nicest walker I have seen so far! He got excited when he saw it which was really cute. We are making progress with walking!

On the downside he had a cold over the weekend. It wasn't a terrible one but a cold is a cold. I know his therapists gave it to him because we hadn't been ANYWHERE last week and after one of their visits he got sick. It is frustrating when I don't take him out much to stay healthy but then they bring it in. UGH.

Oh I have another story for over the weekend. The other day Blayne was watching TV in our living room and on the couch. I went into the kitchen to sit at the table to fill out some paper work. I was in there maybe 2 or 3 minutes and then I went to check on him. He wasn't in the living room (we only have the living room and kitchen on the main floor) what a weird feeling. So I started calling him and realized I hadn't put the baby gate up on the stairs. I ran up there to see him trying to climb into bed. THANK GOD he didn't fall. Our steps are so steep and there is 15 of them. We have hard tile at the bottom of them too. He could have gotten hurt so bad. He was so proud of himself though. He has never climbed the stairs by himself. Needless to say, I will never forget to put the baby gate up again.

We are also trying out a new g-tube button. It is still in the trial stage so they are getting parental feedback with patients trying them. It is really nice and the extensions are so much nicer. They won't pop open at night which means, no more feeding the bed! That is such a mess. Sometimes the little cover would open on his mic-key button and if the valve was blown it would leak all over. These valves are not supposed to blow. For those who don't know g-tubes that probably doesn't mean anything but to those who do, you know what I am talking about.

I have more good news. Blayne had his 4 year check up today and he is finally on the charts for his height. He is in the 75th percentile for his weight and 25th percentile for his height!! He is 38lbs 2oz and he is now 39inches long. He has grown an 1 1/2 since January he was about 37 1/2 inches for a long time.

Ok so now the negative part of today. We have been trying to get a sleepsafe bed for him since like August or September is when I started the paperwork. Insurance denied it. It is a medical bed and medically necessary but they still won't cover it. I am trying to appeal it to see if we can get it covered but I am not sure where we are going to get with it. We DESPERATELY need a bed for him. He has outgrown his crib and as of right now is sleeping in a twin bed sandwiched in between my bed and the wall. We have been doing this for over a year now. It is NOT working. He has never been a good sleeper but he will climb into bed with me at night and whines and rolls. He also hangs on to my hair all night (its a sensory thing) As a result I hardly ever get any good sleep. It isn't good for him either. I so would like to get him a safe bed and be able to put him in his own room. Right now it is so hard to get up and function for the day. When he actually gets a good nights rest he is like a different child. It is hard to get up to do therapy when he doesn't sleep and then sleeps in the next day. As of tomorrow we are supposed to be in another town at 10am. He slept for 2 hours and just woke up (I got him back to sleep thank goodness)

So I am thinking about trying to raise funds to get him a bed. They price is around $6,000. I thought about asking our church for donations to. If anyone wants to donate please feel free. ANY amount helps. I would appreciate it tremendously.

Video Game Junkie

2008-04-07T23:09:00.003-05:00

Last week was pretty calm for us. Spring break was over so Blayne had therapy again. He enjoys all of it but the PT. He doesn't like that she handles him.

Friday I watched two little girls. They are my sister's occupation therapists kids. They are ages 2 and 4. She needed someone to watch them while she did therapy with my sister for an hour. I was hesitant at first. I wasn't sure how Blayne would react to kids and them playing with all of his things. I also didn't know if I wanted to have 'normal' kids next to Blayne. It is kind of hard to explain but all you special needs parents know. It is like, 'ok, I know my child is delayed and has different issues but when you put him next to someone that is the same age you really see just how behind they are. It is like a slap in the face.

We did really well though. Blayne didn't really play with the girls so much but he didn't mind them being there. There were a few times he didn't like them playing with all of his toys. The girls also didn't understand that he had no concept at all of sharing. They were REALLY sweet though. They have never had anyone besides family watch them so it was a big step for them too. As for me I did really well. It didn't depress me like I thought it would. I realized that Blayne is actually pretty good size for his age. He is littler then most 4 year old boys but he was close to the 4 year old girl in size. I know that he is behind but he has his strengths too. Which brings me to the next subject.

His newest thing is VIDEO GAMES. He can play these things for hours. I bought him a v-smile game system with a ton of games (Elmo, blues clues, cars, shrek, etc.) He loved this thing for several months. His therapists were surprised how he could operate the game too. He will turn it on, turn the tv on and get the controller to play. He can't change the games out by himself but will pick up the one he wants and hold it up to the system and say the name of the game over and over until you change it out. While the girls were here I got it out for them to all play. I figured the two year old might be lost but I figured the 4 year old could figure it out. She had no clue. Blayne just played away and I was so proud!

So now he has moved onto bigger games. I have a game cube from when I was pregnant with him actually. I was on bed rest and bored to tears so I bought one. Well, he loves to play this too. He can't actually play the mission of the game like the v-smile, which is made for kids, but he loves to walk the people around. I also have an old PlayStation from when I was a pre-teen. I got a teletubbies game off of eBay and he LOVES it. He will sit and play it forever. So I have a video game junkie on my hands now. I guess he is a typical boy!

Tomorrow I am supposed to take him to the playgroup for the first time with his new school. It starts at 8:30am and it is in a different town. This is really early for us because he never sleeps and he usually doesn't get up this early. I told them if he was asleep I wouldn't bring him but hopefully he is awake. It would be good for him to go. It is 11:30pm here now and he is still awake. I guess we will just have to see tomorrow.

I finally got a new card reader so here are a few pictures from Easter!

New month

2008-03-30T21:56:00.004-05:00

So tomorrow is April 1st. I am so ready for a new month. Yesterday was March 29th the original due date when I was pregnant. Once again it is a day of 'what if' and what could have been. I can't believe it has been 4 years already. I also will get paid tomorrow. It has been really rough not having money for most of this month.

This weekend was a bit rough for me. I ran out of my antidepressant and thought I had more refills. I forgot I had filled my new prescription here in town and not at the Walgreen's I had been using. The pharmacy here was closed over the weekend so there was nothing I could do. Yesterday was OK but I did cry a lot. Today was TERRIBLE. I started having withdrawal symptoms and they got worse as the day went on. I didn't realize that is what it was at the time but I started putting everything together. I got a killer migraine. I have never had one before and oh my gosh it was awful. I couldn't hardly move and thought I was going to throw up it was so bad. I was nauseous and hot then cold with chills and sweating. I layed around most of the day and took some pain medicine. My mom gave me a half of her antidepressant but it is different then the one I take so I didn't really want to but it made me feel so much better. My migraine is gone but as of now my hands are shaking. I didn't think I would have physical withdrawals from not having my medicine I just thought I would be depressed. I am NEVER letting this happen again!

Blayne is doing good. Not to much new is happening with him. He has been getting cabin fever from being inside all winter and has been enjoying getting out and doing stuff with me. We still are waiting to get his walker. I am hoping sometime this next week and if not for sure the next week. One new thing that he is doing is he has gotten very attached to an object. It is really heart warming for me to see because he has never done this before. It is a baby einstein duck puppet. He has had this since he was really little but we jsut found it the other day. He pretend plays with it and asks for it all the time. He will fed it an empty sippy cup. He calls it his quack-quack. He sleeps with it and crawls around with it. He puts his arm in it on his own but can't figure out how to make the mouth move. He will ask for it at different times of the day by saying 'where is your quack-quack?' (he has a hard time with the concept of me, you, mine, yours ect.) It is so cute though. I will have to get some video of it.

relaxing week!

2008-03-20T23:25:00.002-05:00

Not much has been going on this week. Blayne hasn't had any therapy because the school is on spring break right now. It is kind of nice actually. It is good for him but sometimes I just get sick of people coming in and out and dealing with paperwork and being on the phone and dealing with insurance and all of that stuff. I sometimes get stuck in a rut and and maybe feeling blue. I am not sure, can't quite describe it. It just seems like when we are at home all the time I get to the point where I don't want to do out. I don't even like talking to my neighbors. Is that terrible or what? They probably think I am very odd. I don't know. Anyhow, Blayne will be starting to go to the actual center not next week but the following week. It is time and it will be good for the both of us. Although school is only in session until the middle of May.

On a lighter note, Blayne should be getting his new gait trainer next week! I am so excited because he walks so well in it. It is smaller and lighter and more 'kid looking'. We should also be getting a new car seat any day now. It is so funny how a special needs parent can get excited about equipment and medical supplies. You feel like a little kid a Christmas when you get new things. My card reader broke for my camera but pictures will be soon to follow!

Finally I'm back!

2008-03-15T20:15:00.001-05:00

Ok. So I know I have been terrible about updating our website. It isn't that I don't want to, I just don't have the energy. Like I said, I still am not sure if people even read our updates. Anyway, I have moved all of our past updates onto our new blog. I still want to finish a personalized one from scratch but until then, this works. So, let me get you up to date:

Halloween:
Halloween 2007 was great! we took Blayne to the mall like the year before. He had a lot of fun. He was a fire breathing dragon. The sad thing is, it was the same size as last year, same brand and everything but instead of a duck he was a dragon.

December:
Christmas was also really fun this year. We celebrated it at my house with the usual family get together. Blayne's favorite toys were the TMX friends Ernie and Cookie Monster. He also got a little dinosaur that roars and walks. He is still loving them after several months.

4th birthday:
We celebrated his birthday in Nebraska. He had his first 'birthday party' with his cousins and everything. The theme was Disney's Cars. He had fun but was tired. He loved ripping the paper off of the gifts this year though. That was fun to see.

A few months ago he had a check up with his neurosurgeon and things looked great. The shunt is still working. He also had another eye check up a few weeks ago. Again, things looked great.

Ok guess what? We have moved again! Can you believe it. I know it is terrible, it seems like we move every 6 months. My poor mom is the only one that helps me every time too. I don't know how she does it. It seems like we move all the time. We temporarily moved back in with my parents but as of last month we got an apartment in the same town. It is nice to be in the same town if I need them for any reason.

The bad thing is this is only temporary which means I will have to move again. It is an upstairs/downstairs duplex with the living room and kitchen downstairs. and the bedrooms and bathroom are upstairs. This is not a good arrangement for us and we need a one floor. The steps are REALLY steep and I have to carry Blayne up and down them. It kills my body. I am so afraid of falling too. It is public, low income housing so they never know when another unit will be available. To get a one level duplex could be a few months or up to a year, it is just a wait and see thing.
We have been here for about a month and have gotten all settled in. We are getting used to new therapy again and all that fun stuff. My rent is more expensive here but it is a really nice unit. They do a great job keeping up the maintenance.

Ok so for some exciting news. I started working with Blayne a few months ago with potty training. He is doing great. He is really starting to catch onto it. He poops almost every time in the toilet but he has yet to pee. It is so hard carrying him up the steps so since being in our new place we have slowed down a bit but still trying. We are getting a special needs potty chair with funding (price tag of $1200). We are also working on getting a new walker and we are fighting insurance to get a special needs bed. I would love to get an indoor base for our stroller to make it a high low chair. I am looking into funding for that as well.

More news:

He still isn't growing. He is right around 38lbs and 37inches. Based on his age he is very short. For weight and height ratio of his own body though his weight is 95%. I am sure he will catch up eventually. The doctors aren't to concerned but if you look at him next to another 4 year old, Blayne looks about 2. I guess he didn't grow for 2 of the 4 years he has been alive which brings me to the next subject:

Food allergies:

I finally got Blayne into a new allergy doctor closer to home. I was never really happy with the one we had in Kansas City. So they did a whole new round of tests. He is allergic still to everything under the sun! I was so hoping he had outgrown them. They did the back test prick thing where they prick a tiny spot on his back and then drop a liquid type form of protein of the suspected allergen. They tested 54 different things so he had to be poked 54 times and they had to draw blood three times. UGH but it is behind us now and we finally know for sure. He is still allergic severely to egg, milk and peanuts. He is also moderately allergic to soy, wheat, oats, cinnamon and broccoli. Who knew you could be allergic to the last few.

We also found out that he is also allergic to just about every tree and grass outside as well which explains why his asthma is so bad. We are on some new meds though and so far they have made a HUGE difference in his breathing. The allergy med also helps him sleep at night so I am thrilled. We also started him on over the counter fish oil and probiotics for his stomach. This is supposed to help the food allergies. His new doctor actually almost died from food allergies when he was a baby and he slowly outgrew them and now as an adult can eat almost anything. That is very encouraging. He is very knowledgeable and I finally feel like we have someone who is going to help us through this.

Other then that this month has been pretty stressful. I am still not working and I had an unexpected thing happen. I was under a contract with Direct Tv and when I moved I couldn't have it in the new apartment. I tried to get everything straightened out. Well, they had my debit card information on file online and in the fine print in the contract it said they are authorized to take remaining payment if the service is terminated early. So I had about 150 to 200 left for the month for gas, utilities and diapers and a few other little things. One day I check my account and I am overdrawn by $495 dollars. They took $700 out of my account. I don't even get that much a month to live on. I was so upset. Luckily my parents helped me but they don't really have that much right now either. I am also still trying to pay off the repair of my car which was $710. I guess it is one of those live and learn things. I am going to try to do something from home to make extra money because we just don't have enough per month but I really can't work.

Ok, so all caught up!? I promise I will be updating this blog much more frequently. If nothing else it will be my little online journal. I hope people read it though too :)

Recent pictures will be up soon so keep looking!

Time for an update

2007-10-01T16:21:00.001-05:00

October 23rd 2007
Wow I think it is about time for an update!! I cannot believe how long it has been since I have updated the site. I apologize. These past few months I have been dealing with a lot of things and overwhelmed with life in general. I also am not sure how many people still read our updates. I sometimes feel like I am typing to a blank screen. If you enjoy hearing from us please encourage me by signing the guest book. I have also been working on organizing all of our digital photos, which is quite the project. So I will try to update you on how things have been going up to this point.
We have moved once again. Our old house was way too small and there just wasn't enough room for all of Blayne toys, equipment and then room to work on therapy. Between the move and trying to get unpacked and organized I have been VERY tired. Blayne is still not sleeping well. By the end of the night I have an hour or so to finally sit and watch TV and then I crash. The past 3 weeks or so have been better as he is back sleeping in his crib for most or half the night. He slept in my bed for about 3 months and it was terrible. He still whines during the night and it wakes me but at least I can sleep in between without him rolling, kicking and taking my pillow! My mom and I are working on building him a twin size crib but again we are just trying to find the time. Isn't everyone?
Blayne attended summer school (therapy) about every other week throughout the summer. Therapy is now quite different though compared to his old program. If you remember from my last update, I drive him to the school and drop him off while he has playgroup with about 2-3 other kids and works with his therapists for one hour. I then go and pick him up. It was very hard at first and each time it feels weird to leave without him. He is doing great though and as his therapists say 'is becoming quite the school boy'. He has slowly gotten used to being around a few other kids, which is a huge step for him!
On August 21st he was supposed to start actual school. Well, it is headstart (preschool) and it is his therapy program. He was supposed to go Monday-Thursday for 3 hours each day, which is way more then he is used too. I took him to school enrollment and I realized he IS NOT ready for this program. He is so used to being at home and having therapy one to two hours a week not 12 hours. They outlined the day that he will follow and it would be from 11:50am-3:00pm. They would have a snack time, lunchtime, recess and potty breaks. Another big part of the preschool is field trips. Ok, so Blayne can't do any of those. He is not eating and still on the bottle. He cannot be up walking around so he would sit in a stroller or get hurt at recess time while the other kids play. Plus with winter months coming he will be getting sick a lot. His asthma has been really bothering him for about two months now and he cannot have the flu shot because he is allergic to eggs. I think his class was supposed to be made up of 12 or more kids. Blayne would still have a one on one Para so he wouldn't be alone but his playgroups have only been with 2-3 kids that are nice and quiet and gentle. The last one there was 5 plus Blayne and he did not do well. He can't handle the noise and all the commotion of the other kids combined. Some great news from so enrollment though, Blayne got his teeth checked for the first time and the dentist said they look great and no cavities! I was so happy since he is still on the bottle I was just sure he had a few.
So I drove home from the meeting feeling down and panicked. I had no clue what to do. This was supposed to be his therapy program. He can't go without therapy, so I went to his old Infant/Child program. I talked with his old service coordinator and she told me my options. I do not have to put him in the school. I opted for home-based services until he is supposed to start kindergarten. So this next year he is going to have home-based, one on one therapy again so we can work on walking and eating and small skills needed to be in a structured classroom. Then next fall we can slowly transition him in to get ready for kindergarten.
Now, some BIG news. Blayne has begun to walk with a gait trainer/walker. Not very far and just a few steps but he is doing it. He pushes it all by himself. I am so proud of him. We have been working on this for so long now and he didn’t want to have any part of it. He is still unsure of himself and afraid to fall so we are still working but it is a huge step in the right direction for him. He still cannot stand unassisted but again we are working very hard.
I am also trying to work on getting him to eat orally and sippy cups. I REALLY want to get him off the bottle. Not only are they expensive ($25 a piece) and they wear out fast but it also cannot be good for his teeth. Again we don't want to take the bottle away because this is his only oral stimulation and if we take away the bottle completely he could lose interest in putting anything into his mouth, which is hard to get back. Then we would be even farther from getting him to eat solid food. If I think back though it took him forever to get the hang of the bottle so I am sure he will get to the sippy cup in his own time which is a theme with this little boy.
We got him started with a feeding specialist. We really needed to get a professional involved to get this eating started. The older he gets and the longer we go without him eating the harder it is going to be. She is great and I am so excited to finally be getting somewhere. We are making steps slowly but surely.
Other then that I have just been enjoying how fun and sweet loving my little guy is. I am so proud of how far he has come in the past 3 years and 9 months. It seems like it has been a long hard road but it also seems like time has gone so fast when I stop and say almost 4 years. His speech continues to soar and he is getting very talented at playing the piano. Just off of the top of my head these are the songs he can play: Twinkle, Twinkle Little Star, Old McDonald, Jingle Bells, Row Row Your Boat, The Backyardigans theme song, Hot Cross Buns, and the newest song Ode To Joy. I am telling you, this little boy has a small fortune worth of toys to keep him stimulated and entertained and the electronic keyboard from when I was a pre-teen is his FAVORITE along with his TV shows. I do not teach Blayne these songs. I can't play the piano any better then he can, honestly he is better, but he will play something over and over until he figures it out just perfect. The Little Einstein's episode had the Ode To Joy playing the other day and I am not kidding you, he looked at the keyboard and played it perfectly without ever doing it before.
Alright so again, another long update. Hopefully with things calming down now I will have time to post more. Stay tuned...

May

2007-05-01T16:19:00.001-05:00

May 2nd 2007

Ok. Here is what is new with Blayne. He is growing like a weed. He is up to 33lbs 8oz and is 37 inches long. He is getting VERY heavy and hard to pick up. I am just thrilled how well he is gaining weight though. It seemed like it was a never-ending battle that we are finally putting a dent in. We are still working on solid foods. That is going to be a long time coming but we are starting. For the first time a few weeks ago he actually CHEWED a lucky charm with his teeth and ate it. I was SSSOO excited. That is the first time he has ever chewed anything. His new favorite thing to eat is Chocolate Teddy Grahams. I usually just offer him cereal or something that he can eat that he isn’t allergic to while he is sitting in his high chair. Even if he just plays with it he is getting used to the idea of food. We are still working on sippy cups but he refused and loves his bottles.

Playgroups have been going really well. Every Tuesday I take him to the school that he has his therapy through to have playgroup with two other little boys. He likes it a lot better then his last therapy because that playgroup was big and very loud. These two little boys are calm and very nice to Blayne so that is good. Yesterday was the 4th week I have taken him. The first two times I stayed in the room and last week I stay in the building outside the door. Yesterday was the first time I actually left him. It was very strange and hard. His physical therapist is with him the whole time though. He did GREAT. I was so worried when I left him that he would throw a fit and be unhappy. He loves the little matchbox cars and they made caterpillar pictures and sang bugs songs. When I picked him up he told me capatiller and did the itsy bitsy spider and bumblebee signs. It is nice to get him used to me leaving him because in the fall he will start going to therapy at the school. I am not sure if it is every weekday or just certain days but I will leave him for 3 hours to do therapy. That is going to be hard but is a ways away.

We got his new special needs stroller finally. We have been working on the paper work and funding since September. This thing cost $3,600!! It is very nice but big and heavy. It was a hard day for me. It took me about 2 frustrating hours to get everything together and adjusted and I finally got it finished. I stepped back and was looking at it in my living room and it was huge and obviously not a ‘baby’ stroller. Right in that same moment and thought I looked out my front window to see the little boy who is only a few months older than Blayne riding his bike. I just lost it and broke down. The day before I finally went and got handicap tags and Blayne has almost outgrown baby diapers so I am looking into ‘special needs’ diapers. It was just all too much. I am better this week though. I am happy that Blayne has come so far but I think that every special need parent is in survival mood and a little bit in denial so we can handle things. Once you stop and really think about it, it gets very overwhelming.

We also got Blayne a new twin size bed. He has outgrown his crib mattress and hasn’t been sleeping very well lately. It is killing me too. I am so tired during the day. This is like the 4th night to be in his big bed and he isn’t doing to well. I have it pushed up against my bed for the time being and safety rails on the other side so he doesn’t fall out. My mom is going to help me make a twin-size crib for it but we just haven’t had the time yet. Each night he has climbed up into bed with me. He is fine when he sleeps with me but if he is in his own bed he whines all through the night. At first I thought it was the diapers, then maybe the mattress well we have changed all of those things and he is still doing it. My mom and I have noticed at night he has been breathing funny so we are worrying that he maybe has sleep apnea. It is strange that he is ok in my bed though. Maybe it is just a phase.

Hmm, other then that not a whole lot is going on. Blayne continues to improve in his speech and is saying more and more sentences. He is LOVING Teletubbies right now and is obsessed with them. I am getting very sick for them though lol. He has picked up the sentence ‘it smelled galicious (delicious)’ from one of the episodes. He tells me ‘me not tired’ ‘take a map (nap)’ ‘go night, night’ and plenty of other things. Well I guess I had a lot to talk about this time. I am going to try to get some new pictures put up but I can’t promise anything!! J

March

2007-03-01T16:16:00.000-06:00

March 6th 2007
So Blayne’s eye check up went great. Good news, he doesn’t have to wear glasses anymore! She said that it could and probably would change later but as of now they probably don’t make a huge difference and that is why he could care less about wearing them. She thinks that he is doing great with his vision and was very pleased. Other then that nothing to new is happening. I am just trying to keep up with that little boy and keep him entertained. I will be posted more pictures soon so check back!

March 20th 2007

Blayne had a check up with his Neurosurgeon and his G-tube doctor last week. Everything looks good. His Neurosurgeon seemed happy with his progress and they weren’t concerned at all about the VP shunt. I don’t really care for his personality though. He is a great doctor but his attitude towards Blayne’s future I don’t like. He just assumes Blayne won’t walk. My mom said it is just his personality but I think he is jumping to conclusions and it’s rude. He only seems Blayne far about 10 minutes every 6 months. Most of the time he is tired and ready to take a nap from the long trip and waiting. His therapists work with him all the time and his PT thinks he will be walking within a year and for sure by kindergarten. So oh well, we will just prove him wrong. He doesn’t have to be seen back for another 6 months unless a problem arises. He had his Mic-Key button changed to the next size as the old one was getting to tight. He is sure growing! He is now 32lbs 3oz and 35 1/2 inches long! I have changed it a few times at home before but we didn’t have the next size tube to change it to. He was asleep for it and slept through the whole thing! I was very surprised.

That same evening we got his pictures taken. We hadn’t gotten them done since July of last year so I say it was about time. He was not in the mood at all. He wasn’t grumpy or anything but he didn’t want to pose or look at the camera and forget about getting a smile out of him. He just wanted to play and lay on the floor. We did get some really cute ones though.

I need to get pictures up from at home that I have taken lately. I need to get them on the computer and organized. They are still on compact flash cards. I just need to find the time to do it. I have gone back and I am starting to try and organize all of his pictures from birth to now on the computer. It is quite the task and I find it hard just to sit and stay at it. I always get up to help Blayne and don’t get back. Oh well, eventually.

In Blayne news, he is getting very clear with talking and sentences. He is really talking to communicate now. Last week my grandma asked him if he was ok and he said, “I don’t think so”
He also will tell you, “I don’t want it”. He tells our dog, “Stop it” and “Baxter, NO”. He has gotten very good about telling me what shows he wants to watch from our DVR. I will ask him and he will tell me, Backyardians, TiTi Beach (for the episode) or Wonder Pet’s save the Swan, etc. If you turn on the wrong one on he lets you know it. Boy can he sing. He loves to sing. I really need to get it on video. This morning he woke up singing a pirate Backyardigans song and he was singing it so clear. He has a very good voice and sings right on pitch too. I can’t believe how fast time is going. He is such a sweet little guy.
Wow I was just sitting here thinking that his original due date is really soon. This year hasn’t been as hard as the past ones but I guess I have been to busy to think about it. Again this month is always hard for me as I think about what could have been. I sometimes stop and wonder what Blayne would be doing and acting if he hadn’t of been born so early. Would he look different too? I am sure he would be bigger and his head and eye color difference would be different to. I get down sometime when I compare him to a child his age. Blayne is still drinking from a bottle and playing with baby toys, still can’t walk etc. Its not that I feel ashamed or bad about it but I just wonder when we will ever get there and hit those milestones or in our case inch stones J. If I could, I would change Blayne for his sake to ‘normal’ but when I stop and think about it, I love this boy so much and I couldn’t imagine him any different. He has made me a better person and I am way more compassionate. I always have been but now I truly understand that, until you walk a mile in someone’s shoes you have no idea how it is. I feel blessed everyday when I wake up to this special child.

February

2007-02-01T16:15:00.000-06:00

February 22nd 2007
So this month, not too much to update on. Blayne has been healthy (knock on wood) which is great with all of the sickness that has been going around. We don’t take him into the public though so that is why he is healthy. He has given up naps but has been going to bed around 7:30 or 8:00 and sleeping through the night. Every day his speech is getting better. He still has problems with b’s and t’s. Like today he was saying ‘spanks’ for thanks and then would say your welcome. He is such a character. He likes dinosaurs and elephants right now. He gets all of that from the TV show he watches. He also calls the TV-TB. He calls himself gwayne too. He will look at me and saw ‘what do you want gwayne’ because I always ask him ‘what do you want Blayne?’ and will get it for him when he tells me so he thinks if he says that he will get it. He also says stuff and then says ok because I usually tell him ok so if he says ok he thinks I will get it for him. He is so silly. I need to weigh him again but the other day he was 31lbs 10oz. Other than that everything is normal which is good. We are just working on therapy and staying healthy. He has an eye appointment next week so I will update after we she the doctor.

January Summary

2007-01-01T16:13:00.000-06:00

January 16th 2007

Wow it is 2007! So Blayne is officially three years old and boy is it showing in his attitude. My mom says he is just now going through the terrible twos cause he hasn’t had that yet. He has been so sweet and still is but he is getting an attitude, which is good sometimes. Other times it is not!! Christmas this year was great. My real dad was here for it as well as my other family and my sister and her husband. It was wonderful spending time with them. Blayne didn’t get as excited as I thought he would. I thought he would love opening presents but he didn’t seem to care too much. He did like his presents though.

His birthday this year was so much fun. I would have to say this was the best year so far. I made him a cake he could actually eat but he refused to try it. Oh well, we tried. He LOVED his presents. He got a little rapping frog that dances and he LOVED it. He only wanted to play that the whole time. He dances with it and bounces. It is so cute. The pictures are on my parent’s computer so I will add some once I get them.

At his last WIC appointment on the 5th he was 30lbs 12oz and 34inches long. He is growing so fast. This week he has been saying so many sentences. He is signing better than ever as well. He says some sentences that I cannot understand as hard as I try to figure it out. He is jabbering but says it over and over when I ask him ‘say it again Blayne’ and he looks right at me and says it about 10 times. When I can’t figure it out he gets SO mad. Most of this time I can figure it out but there are a few that is impossible.

He LOVES to take baths. He hates getting his hair washed but loves to be in the water. Every time I get ready to give him a bath I will say to him ‘lets take a bath’ so this week I finally figured out what he was saying. I thought he was asking for a TV show but he is saying let take bath (les ake faf) lol. He has a hard time saying bs and ts in certain words. But he will say that and head off to the bathroom. I usually don’t have the heart to tell him no because he is trying so hard to communicate and he wants a bath so bad but he is wanting one 3 times a day and it kills my back!! So yesterday he was saying it over and over and I kept saying ‘Blayne no, you don’t need that’ and he said as clear as day ‘I want to take a bath’ it was so cute. That was his first clear and long sentence!! He will say ‘need help’ when he needs help with so something and he was also ask to get this certain toy down from his play table by saying ‘want it down’ he is also asking ‘on the couch’ to get on the couch. He will also tell me ‘I’m cold’ after baths. I know he is saying more but those are the main big ones. I am so excited because he just repeated things for so long.
He had a few appointments with his new therapists. I think they are going to do great with him but I admit I miss the olds therapists. L It will just take some time. He had physical therapy today and he was NOT in the mood. He was such a brat during the time. Usually he just fakes it but he was tired. For close to a week he has not taken a nap during the day. As hard as I try he won’t take one. So I have just been putting him to bed early but I hope it is just a stage because he NEEDs his naps. I need him to take a nap too! Other than that we have been great and healthy. I will be adding new pictures once I get them.

December summary

2006-12-01T16:12:00.000-06:00

December 13th 2006
I tell myself everyday I am going to sit down and write an update. However, Blayne keeps me busy and by the end of the day once I get the little guy to bed I am just to tired to do much. Well, its time for my montly update…
Blayne continues to do well. He has been healthy (knock on wood) and growing. He did have one scare a few weekends ago though. My parents watch him on Fridays for me so I can have a break and alone time. Blayne has a machine for breathing treatments when his asthma bothers him, I forgot to pack it. My phone died over night and I could not find it. The next morning Blayne had an asthma attack and the whole time I had no clue. My mom told me that he was laying on the floor and not moving to much and having difficulty breathing. She was going to come get the machine but he got pretty bad. His lip started to turn blue so they took him to the ER. His saturations where 85! They gave him a treatment and he was all better. He keep telling the nurse (I'm not scared) but my mom said he was really scared, poor guy. He hasn't gotten sick so that is good. I thought maybe it was the start of a cold.
I have noticed now that now that he can't throw up when he eats something he is allergic to he has asthma attacks. My mom said that he actually swallowed some of his toddler cookies that day so she thinks that is what did it. After the fact she looked at the box and it had a milk protien in it.
That is one thing that is going to be a battle for awhile. He is still on the bottle and on his hypoallergenic formula. There is so little that he could eat for so long and still very little now, that he doesn't have eating skills. He doesn't know what to do with food once it is in his mouth. He is interested and puts it in his mouth holds it there and then spits it back out. He doesn't do well with texture. I make pureed baby food for him and I am slowly trying each day to get him used to it. He is happy with his bottle though. I guess whatever keeps him healthy and growing is all that matters.
He is really talking now. He is starting to say sentences and really communicating with words. Before he would say words but not to really communicate. I think he has figured out that when he talks we respond to what he is wanting. He will ask for playdough and to get up. Today he wanted down out of my lap and he said get down. He knocks on the door and says ‘come in’.Each day he gets better and better. I am trying to think of some of the sentences he is saying but I can’t off the top of my head. I know he is starting to say a lot though and not really just repeating but actually talking which is great.
He LOVES to watch TV. He has pretty much claimed the TV in the living room during the day. He would watch it all day if I let him. He has learned a lot from watching it though so I don’t feel it is hurting him. I do encourage him to play but when I turn it off he gets so mad. He says in his little voice ‘TV’ until I turn it on. He will also ask to turn on music but he knows how to turn it on and is good about doing it and turning it up really loud. His favorite shows are ‘The Wonder Pets’ ‘The Backyardigans’, ‘The Little Einstein’s’ ‘Blues Clues’ and he is getting into ‘Go Diego Go’ and of course he still loves his “baby Einstein DVDs’. I would have to the The Wonder Pets and Backyardigans are tied at his favorite right now.
The other day he pick up a play phone and acted like he was talking to Tyrone from the Backyardigans. It was so cute. He would say ‘hello? Tyrone? Yeah, ok, goodbye.’ He just amazes me. He is really getting into books and naming the pictures. I got him a magnetic chalkboard that has all the letters and numbers. I got it out and he was playing with it and he started pulling off the letters and telling me what they were. Not just in order but actually pulling them off randomly and saying what they were. Then he would tell me the numbers. He would say ‘the number three’. He has the cutest voice too. I was just shocked that he could do that. He knows the difference between letters and numbers but he had never told me individually what they were. He also knows shapes and not just the basic shapes but he can also say like ‘hexagon’ He can count to about 14 and then mumbles after that. He also knows lots of colors. It is just so exciting to see him advance like he is.
Blayne is VERY musical. That is a real motivator for him. He loves to play the piano and he loves to sing. He has perfect pitch and he can sign just about anything. He knows so many songs it is amazing. He also learned how to play part of the Backyardigans theme song on the piano! I was shocked the first time he did it. He can also play hot cross buns. I think he is going to be a musician as he grows! J
We went to Kansas City yesterday to see his Rehab medicine doctor. She hadn’t seen him since his new shunt and stomach surgery. She thought he was doing great and was very impressed. He weighed 30lbs yesterday too!! He has gained about 10lbs since the end of April. That is awesome he is finally growing.
I cannot believe my little boy is going to be 3 in just two short weeks. It does not seem like it has been 3 years. December is always a hard month although this year was easier than the past two. Today was the three year date of Jaidyn’s death. A piece of my heart will always hurt and wonder what could have been but again, I think this year isn’t quite as bad. I am to busy most of the time though to think about it but yesterday Blayne was playing with himself in the mirror and I wonder what it would be like for him to have his sister here. I also wonder how Blayne would be if he didn’t come so soon and have so many battles to overcome. I guess you can’t dwell on what might have been but focus on the future. Life just isn’t fair sometimes and I don’t think we will ever understand the extent of Gods plan while we are on this Earth. I do have to tell you though there are some days that I just break down. Not just for Blayne but for my sister and everything that Blayne is going through as well as personal and family problems. I miss my sister so much but Blayne keeps me so busy I don’t think about it a lot. Sometimes I will just stop and think about everything and it is so hard and painful. Again you just have to focus on the future. Easier said than done but we are so blessed through all of our tragedies. Ok enough of that. Well, since I have wrote a short novel I better end this update for now but I will try to write again soon. I hope everyone has a great and safe Holiday!

November summary

2006-11-01T16:10:00.000-06:00

November 19th 2006

Wow things have been busy and crazy here. We took Blayne trick-or-treating at the mall for Halloween. He really enjoyed it. We first walked in and he saw all the other kids and got really excited. We took him to the first store and he got some candy and as we went past he said ‘again, again, again’ and started clapping. He could also say trick or treat, a little mumbled but still able to understand but most of the time he had a sucker in his mouth.
Therapy has been going really well. He is really improving on his cruising skills. He can walk clear from the TV entertainment center in our living room holding onto the wall and coffee table and then he makes his way to the front door where he tries to open it. He is just tall enough to stretch to reach the knob but he can’t open it. I really have to watch him though cause one of these days he is going to master it and knock himself over. We are just working on transitioning him into his new therapy program when he turns 3 next month.
I am sure a lot more has happened in the past month but I can’t think of it off the top of my head. He had an eye check-up last week. Things are still looking great and she is very pleased. I weighed him the other night and he is up to 29lbs 5oz! He is really starting to grow which is exciting.
A few weeks ago Blayne caught a cold and then I got it. It lasted about 5 days so we were pretty tired. His asthma got to him bad and we had to take him to the doctor. He is feeling better now. He is talking up a storm now. It just surprises me some days how clear he says things. He is really saying his S's good. This week he is saying music, what's this? what's that? and shoes. He is so funny. He mainly repeats things though. He can't sit there and have a conversation with you but I think he does understand you. He talks better singing with music too. It is so funny though when I say Blayne he will say WHAT?!
We celebrated Thanksgiving tonight with the family. It was the only night it would work out for everyone. It was nice to get together. Blayne didn’t want to eat the turkey though so he did his own thing but it was really nice to have the family together. We are so greatful to have my sister with us and looking at her tonight I think back to last Thanksgiving when she was still learning to eat. How far she has come in a year. I am so proud of her.

2006-10-01T16:08:00.000-05:00

October 2nd 2006
All right. So, new news. Blayne got new braces for his ankles. I have noticed a big change in his standing and wanting to take steps. I had to get a size 9 shoe to go over the brace though were without anything he wears like a 4 o 4 1/2 so his feet look huge! He is doing really well with everything. Today he had a well check up with his pediatrician. He woke up with a cold so I was glad we had it scheduled. Unfortunately it is getting to be that time of the year again. Illness! I really hate worrying about catching something everywhere we go but I am being more aware now that stuff is out in about. His mickey button in his tummy is infected to. Not actually inside but the skin around the opening site. It looks really sore. Needless to say he wasn't very happy today. He is supposed to have physical therapy tomorrow so I guess we will see how he feels.
His pediatrician today said that he is looking great and has improved a lot since the last time he was seen. He was 27lbs 9oz. He always weighs lighter on their scale but he may have lost a bit since he hasn't been feeling the greatest lately. He was 34 inches long. He had a check up with his stomach doctor last week in KC and they were happy with things so we don't have to go back unless we have problems. That is such a relief because we won't have to drive up there as much. It is really hard and Blayne and me too. This week I have really noticed with his new braces that he is getting brave and grabbing objects to walk in between them holding on. That is really brave actually because he is so unsure about standing because of his low tone, it is really hard for him. I am so afraid on of these days he is going to crash and be afraid to do it again! Well, I can't think of anything else at the moment.

October 18th 2006

Blayne had a check up with his allergy doctor last week. It had been one year to the day since he last saw him at the appointment. They checked his blood levels to see what he was still allergic to. We just got the results back on Monday and this is what we found out:
Normal levels in a no allergic person should be <0.35. With the egg he was over 100. It doesn’t state what after it hits 100 so he is really allergic to egg still which was the worst before too.
Egg >100
Milk 51.50
Wheat 8.8
Soy 0.64

So the wheat and soy were just barely positive so he said we could slowly start introducing those back in the diet, which we kind of have been with a few toddler Gerber foods. They also tested him for other likely allergens. I called and talked to the nurse and she said that peanuts showed up positive too at 8. She said he would email the rest of the results, which is kind of strange because I thought they would all come in the report in the mail. Anyhow, I was really hoping he would have outgrown everything so it was disappointing but not surprising. We will see him back in a year to retest him.

I took Blayne to his very first playgroup today! It was through his therapy. I was really worried how it was going to go but he did much better than expected. I stayed by his side the whole time. There were 6 other kids there all around the 2-21/2 age I would say. He sat at the table and played play dough with the other kids but once they got loud he realizes other kids were there and dove off the chair to me! I honestly though he would cry first thing though and want to leave. The rest of the time he just got fussy and didn’t want to play with the kids but he played with me on his own. It was just nice to get him around other kids. His therapist said he did great for his first time. The kids had snack time, which Blayne couldn’t do, and then we sang songs. He just listened and once we got in the car he started singing them. Go figure. I was really pleased though. It was a huge thing for Blayne. It is just a lot harder for him because all of the other kids are up running around and Blayne can’t. He doesn’t like how fast and loud they are. With time I guess he will get better. Other than that things are pretty much the same around here. We are going to take him out on Halloween and of course I will get plenty of pictures. I am pretty sure he is going to be a duck. We tried on 3 different ones and that is the one everyone likes!

September summary

2006-09-01T16:06:00.001-05:00

September 6th 2006

All right its time for an update. I forgot to write in my last update about Blayne’s most recent eye appointment. She was really happy with how he is doing. He is farsighted and only needs his glasses for doing things up close. They would be like reading glasses for us. To look across the room he can see just fine but she said that it change into nearsightedness once he gets older. For now though he is doing great and doesn’t require wearing his glasses all the time.
The biggest news I have is about his last appointment. It isn’t the greatest news but I have to share. Through his therapy we were lucky enough to have an evaluation with a developmental pediatrician. There are only a few in Kansas and they usually take forever to get into. They can diagnose certain syndromes and look at behaviors. Well, she diagnosed him with low tone Cerebral Palsy. She said it was mild to moderate and that he will probably walk eventually but it will probably be a year or more and he could be as old as 6 or 7. In regards to low tone CP it is pretty rare. About only 10% of CP cases are low tone. CP is usually tightness. Cerebral Palsy is actually just a term for a motor impairment, which he has had all along. It was a really hard day. I was glad that my mom went with me. It doesn’t change Blayne though and it doesn’t matter, I love him no matter what.
I could handle the CP diagnoses because I figured he had it, it is just hard to hear them say it. The thing that really bothered me though was they mentioned that he had Autistic characteristics. She said that at the time she would not diagnose him with Autism because they are a lot of other reasons why he could be doing them but that he needs to be followed up with on it. The things she did not like about Blayne are that he does not make eye contact much. Which he does with me but he doesn’t really with strangers. He is kind of hard to get his attention sometimes but it is because he is in his own little world playing and doesn’t want to stop. They also don’t like that he repeats everything that we say. The thing is he talks and responds when it is just me he doesn’t just repeat things. The other thing that concerned her was that he is so sensitive to noises and stuff. I think most of that has to do with being born so early. My grandma said well, she doesn’t know Blayne she has only spent an hour with him so I shouldn’t really care what she thinks about his behavior. Who knows. I am just glad that Blayne is smart, it could be a whole lot worse and we count our blessings.
You want to hear about being in the right place at the right time. Right after the appointment my mom, Blayne and I went to eat Chinese. I was pretty down about what we learned. I was getting my food and this lady came up to me. I had never seen or talked to her and we sat down way before she did. She came up to me and said “Can I ask you a question? Are you a Christian?” Of course I said yes and than she said, “ Well, I just want to let you know that I feel the Lord telling me that you have been blessed in a very special way and that your son is going to change the world.” I was just shocked and started crying and hugged her. She came over after we ate and prayed over Blayne with us. It was just really neat because she would have no clue about anything with us.
As of the other day he weighed 27lbs 9oz! He is growing so fast now and getting really heavy for me to carry! Blayne’s newest thing is playing the piano. He loves it! I got my old keyboard out from when I was younger and he loves to play it. He has also learned how to turn the light switch on and off from his crib and loves to do it to stay awake. Goodness, he is doing so many things new I just can’t think of them to write them down. It is getting late and Blayne finally gave up and went to sleep so I better join him.

September 16th 2006

Blayne had a check up on Wednesday in KC with his neurosurgeon. He had a CT scan to check his shunt and all is working. Thank goodness no problems! They said he looked great and was surprised how much more he was talking. So we don’t have to go back for another 6 months for his next check up. This coming up Wednesday we have to go to Kansas City again for a check up with his stomach doctor who did the surgery. We originally had it schedule for last Wednesday but they called and had to reschedule. It is such a long trip and gets expensive so it is to bad but whatever is best for Blayne.
Last week at his therapy, he walked on a treadmill with a harness and did great. I was really surprised cause I did not think he would tolerate it but he really liked it. At one point he was going really fast. He walked on it for 7 minutes, which is great for his first time. This week he played the touch screen computer in OT and he did great. He had once before but was too tired. This time he was wide-awake and loved it. He was picking the songs and then grabbing the objects that matched next to him. His therapists where surprised because most kids can only do one or the other. His new thing is pulling my hair and then telling me sorrwee (Sorry). The other day in therapy he stuck a block in his mouth and the therapist told him not in his mouth and he took it out and stared at her and then said sorrwee. He has also been telling me when he is tired and the other day he asked for water. Also the other night he was tired and I was trying to get him to bed. He was pushing my hand towards the TV and grunting. I have been really trying to make him tell me what he wants instead of making noise. I asked him what he wanted and he whispered TV. So I asked him if he wanted the TV on and he said TV really loud. OF course I had to turn it on for him. He is really starting to communicate with words, which is just great. I will let you know how next week goes.

August summary

2006-08-01T16:05:00.000-05:00

August 24th 2006

I cannot believe how fast the time goes. Blayne keeps me so busy that I hardly have any free time to do anything but I finally forced myself to sit down and write an update. I have been having computer problems for a few weeks but I finally got it fixed. Blayne has his pool therapy last month and again today. He loved it the first time but today he was not in the mood. We all thought that maybe he was just tired but once he got out and back to me he was all happy. He gets really grumpy with physical therapy and she thinks its because it is such hard work for him and he knows by getting upset he doesn’t have to work.
I love the therapy that Blayne is getting here. It is just to bad because once he turns 3 in December he has to go to a new program. We have just gotten used to all of his therapists and I am so happy with what they are doing. I am sure the next program will be just as great though. He is doing so great. I know I keep saying it but every week I see an improvement with him. He pulls to stand to everything and can climb onto the couch. He is still to week to stand on his own unless he has a hold of something and he is so unsure of himself that you have to close by. He is trying to get into everything though and keeps me hoping. He is starting to use words more to communicate instead of just repeating me. When you lay him down he will say tired and he asks me to get up in the morning. He also is looking at pictures and naming what they are without me telling him. He amazes me every time he does something new. Just yesterday he was pointing to the alphabet and naming the letters and they didn’t even have to be in order. I would ask him where a letter was and he would point to it. He also can name numbers by looking at them. I was shocked because I hadn’t really seen him do that before! He can sing so many songs that I can’t even count and he is starting to say a lot of the words with it instead of just humming. It is really cute. He is now up to 27lbs! Can you believe it? He has gained 6 lbs since April. I am so happy he is finally growing and he is starting to outgrow his clothes! I can’t think of anything else new with him. I have several new pictures but they got deleted when I fixed my computer but I plan on getting them back on tomorrow and will try to put some up.
August 14th was the one-year date of the car accident. My sister is doing as well as can be expected but she is really starting to realize what has happened to hear and she is really sad. She is still in a wheelchair most of the time but can walk with her cane when she needs to. We had a big family get together on the date to celebrate her life and she really enjoyed it. We are so lucky to still have her with us. Please continue to pray for her recovery.

July summary

2006-07-01T16:02:00.000-05:00

July 14th 2006

I finally have some free time tonight since my mom took Blayne tonight so I am finally updating the site. I really don’t have a whole lot that is new. We got his button put in a few weeks ago and it has been wonderful. It is so much easier and Blayne is FINALLY growing. He is up to 25 lbs!! I can really tell that he is starting to get some meat on his bones. I am not sure how tall he is because no one has measured him for a while but I know he is getting taller.
He is really starting to seam like a little boy now. It just amazes me how fast he is changing. His speech improves every week. Some his new words this week are; rocket, car keys, teapot. He also crawls into the bathroom and says Blayne’s gonna take a bath. He kind of mumbles the first few words but bath is really clear. It is pretty cute.
We had a great 4th and I hope you all did too. We went to my parent’s house and watched the awesome fireworks display at the college that the town spends about $4,000 dollars on. We have gone every 4th and lat year we watched in the car with Blayne. This year we decided to watch in the stands with him. I really thought the sounds would scare him but he LOVED it. He was mesmerized by the fireworks and watched the whole time. When they would go up he would say WOW and then smile. It was a really fun night.
Therapy is still going great. They are working on getting Blayne into a tricycle that I can push for him. We are starting pool therapy next week and I am really excited about that. I will let you know how it goes.

June summary

2006-06-01T15:50:00.001-05:00

June 7th 2006

First thing before I forget; we got Blayne’s pictures taken professionally on May 10th. They turned out great!
Wow! June already. Where has the time gone? I can’t believe that Blayne will be 2 ½ at the end of June. It seems like just yesterday we brought him home from the hospital. My how things have changed since then.
Again Blayne is doing GREAT since his stomach surgery. We are taking him to KC on June 14th to get his mickey button put in. For those of you who aren’t familiar with the whole g-tube thing, post op they put in a long tube so his stomach could heal. It is about 15 inches long and is such a pain cause it is constantly hanging out of his clothes. The mickey button is almost completely flat to his skin and just opens up like a cap for feedings. That will be so much nicer for Blayne and myself.

I am so happy with Blayne’s new therapy in Salina. It is such a change from our old therapy. I have seen such an improvement in him since starting his new therapy. AS I am sure you saw on the front page just this past Sunday his therapy hosted a Dream Night at the Salina zoo. It was put on exclusively for special needs children in our infant child program. It was so nice! There are only 15 zoos across the united states that do this and it was great to experience. We didn’t have people staring at us cause all the kids of all ages had disabilities as well so we could just take a night and have fun. They hosted a picnic dinner and had a talent show at the end. Best of all everything was free!

For the most part Blayne had a blast. He has some sensory issues though with a lot of sounds and will cry hysterically if he hears something he doesn’t like and then covers his ears. During the picnic they had a steel drum band play and he hated it. He also hated when the prairie dogs squeaked and he hated the apes, which are my favorite L. But he actually pet a cow! For those of you who don’t know, Blayne HATES cows. That is the worst sensory thing for him. If you even say the word or show him a picture he freaks. IT is the black and white ones that are the worst. Anyhow, they weren’t mooing and they were brown. There are some pictures in the album of it. He loved the talent show at the end. They had a guy juggling and doing different acts. He was so excited and kept clapping and standing up on my lap.

It is so amazing now they Blayne is getting enough nutrition the changes we keep seeing in him. He is doing more and more toddler things now. He can now crawl on his hands and knees and pulls to stand to everything. He is trying to say new things everyday and it is getting clearer and clearer. He knows practically every kids song and can hum the whole thing no pitch when you ask him. He will say some of the words to. His new favorite shows are the Wonder Pets on Nick Jr and Little Einstein’s. He loves to sing the theme songs to them. Also I new milestone, for the first time tonight he feed himself!! That is a huge thing because he has been off of solid food for so long now that his therapists said he would get tactile defensive against food. I was starting to see that in him. Well, tonight I ground up some roast and gave him a baked potato. He was in his little chair and feed himself with a spoon and loved it. He has NEVER fed himself before. It was so exciting and I got lots of pictures. Wow this post is getting long. A lot has happened in the past month!
Oh a new exciting thing on my sister update:

The past few weeks she had started to wiggle her toes on her paralyzed leg and for the first time a few days ago she lifted up her paralyzed leg and crossed it over her other one. That is a huge milestone for her. We are so blessed and I thank God everyday for it. I just wanted to share it with you.

A

2006-04-01T15:46:00.003-06:00

April Summary

2006-04-01T15:46:00.002-06:00

April 10th 2006

The check up went great with his Neurosurgeon. He was really happy with how well he is doing. His GI doctor said it was time to consult with surgery to get it scheduled. So, last week we went back up to Kansas City to consult with the surgeon that will be doing Blayne’s surgery. They just got his history and told us what the surgery will do and the recovery and hospital time. They are going to do a fundoplaction (makes it so he doesn't reflux or vomit) and a G-tube(placed directly into his stomach to feed him).
I am really ready to get this done for him. I hate that he has to have another surgery. This is going to be his 6th one but hopefully it will be the last for a very long time. I know eventually he will need another shunt put in as he grows but that shouldn’t be for several years. The only bad part is they cannot do the stomach surgery laparoscopic because of his shunt. They are going to have to make an incision from the bottom on his breastbone to the top of his stomach, which will be about 3 to 4 inches so it is going to be more painful for him. His surgery is scheduled for April 21st with the pre appointment for blood work on the 20th. They said the hospital stay would be about 4 days. I know this is going to help him tremendously though so we keep focusing on that. He won’t have the tube from his nose anymore and no more throwing up!!

He started his new therapy last week and he had physical therapy for the first time. He had it at the department so he was able to use equipment there and they are going to do so much more intervention for him there. It is really exciting. After just one session I saw a huge change in him this week. His physical therapist adjusted his braces and put shoes on over them so he can stand better. All this week he has been pulling up to stand to things, which is a huge milestone for him. He is getting much better balance too.
It will be 6 weeks on Thursday since his shunt revision. He again has been improving tremendously. I cannot get over how much he is talking now. He knows all of his shapes and we are working on colors. He can look at objects and say what they are. He had learned a lot of words from his Baby Einstein DVDS. His favorite words lately have been chair and table and circle. He says them so clear. I just can’t explain in words how much the surgery has helped him. He is like a whole different little boy. He is so much fun and so happy. Again I don’t have Internet at our new house but I will update the site after his surgery. I hope everyone has a great Easter!

April 29th 2006

Easter was really nice for us this year. We spent it in Nebraska with my family. It was nice to celebrate another holiday with my sister and everything we are thankful for. We took Blayne to church too. He has only been twice now and he did pretty well. He colored most of the time but he was trying to sing when the pastor was talking so I had to take him to the cry room.

We went to Kansas City on Thursday April 20th for Blayne’s pre-op appointment. They just took his health history and explained more about the surgery. He went to sleep at 8:30 that night and his surgery was scheduled for 8:30am on the 21st. When he got up he was hungry and wanted to eat but I kept him distracted with toys. Once we got to the hospital and they got him back to a room the head nurse came and told us that Blayne’s surgeon had emergency surgery and hadn’t started any of his scheduled ones yet. Blayne was the third one so we were looking at a long wait. He got so grumpy from being hungry but he toughed it out. He finally went to surgery at 1:30 and it took about 2 hours. He did great and we were sent to the surgery floor with him after. His surgery was on Friday and we got to go home Monday afternoon. It was very long and tiring as it is anytime you stay at the hospital. Blayne slept a lot and was in quite a bit of pain the first few days but the day we left he was very happy.

Since being home it is just amazing that he is no longer throwing up. I know they said he won’t but until you can see it with your own eyes you don’t believe it. His incision is healing great and his g-tube is much nicer than the one in his nose. He is still talking up a storm and says practically a new word everyday. Yesterday he said outside and be gentle (for pulling my hair lol) I counted up how many words he could say and it is 89!! I was shocked because that is great for his age and being a preemie. He is now 22 lbs and 33 inches long hooray! That is another new one for Blayne, saying hiphip horay and it is so cute. He will go back for a check up on the 10th of May and we are also getting professional pictures taken. With all of the surgeries and everything going on I haven’t had them done in awhile so it will be nice to get done. I will add some new pictures to the album tonight. I can’t think of anything else new off the top of my head but I will try to post another update soon.

March Summary

2006-03-01T15:42:00.000-06:00

March 9th 2006

Things have been really crazy for Blayne so that is why I have not written in awhile.
First let me start with the good news. Blayne and I got all moved into our house a few weeks ago. It is going to be very nice for us. I have yet to unpack cause things have been crazy lately.
We have been dealing with Blayne’s growth and the new feeding tube and the upcoming g-tube surgery. We went to KC Children's Mercy last week to his GI doctor for some scheduled tests. He had a radioactive emptying study of his stomach to show how much digests in his tummy and how long it takes. That determined his has a slow GI track, which we kind of already knew. He also saw his Rehab Med. doctor and she thought he was doing great but she has been concerned about his head growth and was the one that first was concerned in July. So we have been going around and around about his shunt working and have had the tests and all that and although his ventricles are very large on the CT scan they said clinically that he was doing great and his shunt appeared to be working. So, we took their word. These past two months his head has been growing faster than it should be but still, they said he was ok. He is not even on the charts for his weight but his head is in the 95th percentile. So, obviously a big difference. She suggested that we take him for a second opinion and recommended a doctor at the KU Medical center. My mom and I decided to schedule him an appointment in a few weeks after his G-tube surgery.
So Tuesday evening last week (Feb 28th) we decided to take Blayne to the Baby Depot while we were in KC to try him in new swings. He has out grown his old one. We have not been taking him shopping to keep him from getting sick and this was the first day and a long time we have taken him in public. So all was well, Blayne was happy and we took him to the swings. We tried him in a few then found one he loved! He would not let me take him out of it. My mom was standing in front of him and he was happy so I went to the other isle to see what they had over there. As I came back a few seconds later I watched him fly out of the swing. My mom was literally right in front of him but we couldn't do anything. He had leaned forward and the tray had not latched very tight and he was not buckled in because we were just trying him in it. As he flew forward his hit his head on the floor straight in the middle of his fore head. He hit is so hard. My mom hurried and picked him up and he was passed out. I hurried and grabbed him and his lips were a little blue and he was limp and his eyes were closed. He then started to throw up. Luckily we were right across from a hospital and rushed him to the ER. He was passed out for 40 minutes!! It was awful and we really thought he may have had a brain bleed. They did another CT scan, poor guy has had so many and it turns out everything was ok. He woke up and was back to himself but very tired. We were there until 2 am but they said he was fine and sent us to the hotel.
He had an upper GI scheduled for the next morning and had to be there at 7:30am so we were VERY tired. He had that done and everything looked good so they were planning on doing surgery in a few weeks to do the G-tube and to tighten his stomach. We were headed out of KC at about noon that day and the ER called again and said that a different doctor looked over the CT scan that morning and they could NOT rule out shunt failure. So they wanted us to come back to the ER for more tests. We got extremely frustrated because they keep doing this. So we called the other doctor and told him the story of his fall and everything that has been happening and he got us in that day at 3:30pm. We did not see him until 7:00 that night but he took one look at his CT scans and said, it is obviously not working and needs a new one. He needs to be back at 8am tomorrow morning and will have surgery! We were shocked.
He did not get in to surgery until 1:30 that afternoon. It took forever. They said that surgery would take an hour and took 3 hours so we waited all day to see him. I did not get to go see him in recovery until 8:00 that evening. He did great with the surgery. They shaved his whole head and is a baldy now. So they got him into the PICU that night. I stayed with him and by the next day he was doing great so they let us go home. His new neurosurgeon seems to think that his should help all of his problems. When they got in and saw his old shunt it was not working AT ALL! Who knows how long he has had pressure on his head. He thinks that it will help his eating and his throwing up and his motor skills. So we are waiting 6 weeks for him to heal and then see how he is doing.
I have been worried about this for a while myself because his head looked so big and on his CT scans his ventricles were very large. We just trusted the doctors though but I really wonder how low it was not working. It has been one week today since the new shunt and we have seen such a big difference in him. That night after the surgery he was eating by mouth and drank it all! He has never done that. He ate 3 bottles during the night. He is eating better by mouth and has not thrown up very much at all. Friday night when we got home he started CRAWLING! Really crawling, he goes slow but is on his hands and knees. His muscle tone is also a lot better. He is not as floppy and can stand better. He is talking a lot more and can sit up by himself and his back is straight and his is steady. It is just amazing. His eyes are also better and not as droopy. So they said in 6 weeks we should see a big difference in him and they think he is going to start advancing really fast. It was a huge blessing in disguise that he hit his head otherwise we never would have figured the shunt thing out. We are going back to KC tomorrow to see his pediatrician to follow up from the surgery. I will let you know what she says.

March 27th 2006

Ok, here is what has been going on with Blayne in the past few weeks. He was doing great right after the surgery and his pediatrician was happy with how he was healing. Then all of a sudden a few days after his check up his incision site from where they took the old shunt out got really swollen. I called his neurosurgeon and they said to take him to the ER or a local pediatrician here. We took him in and they did another CT scan and it showed the old reservoir was leaking out fluid. So we were supposed to take him up to KC to his neurosurgeon after the weekend. Then the day we were supposed to go up that is when we got the snowstorm so we were going to have to wait. That afternoon all of a sudden the swelling went down and it has been fine since! I was so relieved as I thought they were going to have to do a second surgery to fix it.
Last week we got him all set up in his new therapy in Salina and he is going to get wonderful therapy there. I am so excited to get started. It is to bad that we didn’t have therapy like this from the start but I am thankful he will get it now. They are also going to do pool therapy with him. They did their evaluation of him and where very impressed with how well he is doing. His new physical therapist sounds like she has a lot of experience and wonderful ideas for Blayne. She thinks that we can get him to start walking with a push walker he holds onto here in the next few months! That would be so exciting. She also sent us home with a bath seat that we have been trying to get for months. Needless to say, I am thrilled.
It has been three weeks last Thursday since his surgery and I am still in awe of how fast Blayne is improving. He is getting onto his knees while playing and gets in and out of the sitting position. He is also pulling up on things. He will pull up to his knees and tries to pull up to stand but he can’t quite do it without help. He is also just talking up a storm. He always has but is getting so much better. Last night he counted to 10 all by himself. Seriously!! He said it so clear and has done it about 10 times since. He also said cat perfect and is just trying to repeat everything that I say. His head is looking so much better and has gone down from 52cm to 47cm in the past 3 weeks, which is great.
The bad news is we are still dealing with the vomiting. He had been doing well a few days after the surgery but then started again. He has gained some weight though and is up to 21lbs 9oz. We are going to Kansas City again on Wednesday day to see his GI doctor as well as his neurosurgeon and I am pretty sure at this visit they are going to schedule the stomach surgery for him. I am just so ready to get this taken care of and get him growing. He has been in the same clothes for a year and a half now. I know that this surgery will help his development even further. I will let you know how everything goes.
This week is a hard week for me as Blayne’s original due date was on March 29th. As it is for every preemie mom, it is a reminder of what could have been but when I get down I just look at all the blessings that we have.

February Summary

2006-02-01T15:38:00.000-06:00

February 4th 2006

Ok, here is the new news. We took Blayne to his appointment on Wednesday. It was a very busy day. His first appointment was with the Neurosurgeon. I thought it was just a follow up from his CT scan from the week before but as the nurse walked in she said, “Ok, so I understand we are going to tap Blayne’s shunt.” I was shocked. When they tap it they go in and draw CF fluid from his shunt with a needle. I guess since the ventricles were slightly bigger they wanted to check and she if his brain was under pressure and they can tell that through drawing out fluid and with a gauge. They made us leave when they did it and Blayne got so mad, but he is a tough boy and got through it fine. Great news, no pressure and his shunt levels are fine! That was great news. They said if it was under pressure they were going to do surgery.
The next appointment was at 1:00 with the GI doctor. That was the long one! Blayne lost weight from last time. He lost 6 oz in two weeks L. So they said it was time for the feeding tube in his nose. I was kind of frustrated because I had thought a lot about it and would have like for them to go straight to the G-tube, putting one in his tummy. I was just thinking about how easy Blayne’s gag reflux is (he throws up very easily) and I did not think his would keep it in. I was just thinking he will get mad and pull it right out. They said they had to do a trial with the NG tube in his nose to see if he tolerates it and if he does on the 28th of February we will go back to schedule his surgery to place a permanent one. They showed me how to put it in and he hated it we had to splint up his arms so he couldn’t bend them to get it out but we finally got it down. They showed me how to do everything and we left for his next appointment and thought all was great, well as we left and went up one floor and got mad and got so mad he threw up and made his tube come out part way and then he pulled it out. It was back to the GI and they got it back in. Boy did that ever make him made. He was so tired by this point he fell asleep. Then we went for a feeding evaluation and they did have much to say because we are doing all that we can so we went home.
Blayne has done pretty well over the past few days with the feeding tube. We kept his splints on his arms the first day and by the second day, I took them off and he didn’t mess with the tube at all. Yesterday he threw up though and it came out (sorry that is to much information!) and I had a hard time getting it back in. He drinks from his bottle and what he doesn’t finish we run through his tube. I had been doing it by hand which took forever but yesterday they brought me a pump and it has been great. I really think this is going to help him a lot. I finally feel like we are getting somewhere.
New things Blayne is doing; last week he said triangle! He also has started to play pat-a-cake with my hands. I take his hands and do it to him so he thinks he has to do it to you. He sings da do da do da da da da with the tune of pat-a-cake. It is so cute. He also loves to talk on the phone and plays pretend. He is also trying to feed me everything and his biggest thing lately has been pulling my hair!! It has been aweful and he thinks it is hilarious. Last night I bought him some elmo soap finger paints and put him in his high chair to finger paint and he loved it. I asked if he was all done and he said gall gone (all done) and has been saying it ever since. He is such a little cutie and loves to play.
In news with me: Blayne and I where supposed to be moving this week to our new apartment. The same day I was getting everything set up the housing authority in Salina (where I really want to move) called and they have a place for me! My rent is going to be half the price of here and it will be ready next week. Needless to say I am very happy and excited. I will let you know how things go once we move.

February 17th 2006
Well, still no move. Our house wasn't ready yet as they are doing a lot of work on it. It SHOULD be ready next week. I am keeping my fingers crossed.
Blayne is doing well except for the fact that he came down with a cold on Monday. I have no idea where he caught it from, as he hasn't been in public since the 1st. He has been coughing up a storm and not feeling well. The feedings haven't been working well either because he is coughing so much. He has been getting a home health nurse visit every week to weigh him and see how the NG tube is going. Today she listened to his lungs and suggested that we get him seen as with the NG tube and throwing up he could have aspirated into his lungs. This evening we took him to the ER and they did a chest x-ray. No aspiration and it isn't RSV or influenza. He said it was more than likely a virus and gave us some antibiotics just to make sure and some more medicine for his breathing treatments along with cough syrup. It was better safe then sorry. On top of that he is getting so many teeth and molars, poor guy!
In good news, Blayne saw his eye doctor on Wednesday and she said that the stigmatism in his right eye has improved even more. When he was really little it was pretty bad. She said he was in normal range for his age so for now, no glasses! Not that he would wear them anyway lol. We are going to keep watching him though. Also, she told me that the therapy in Salina is wonderful and was thrilled that I was moving up there. The most exciting news I have right now is, the other night Blayne pushed and sat up for the first time!!! I was so excited and luckily I was taping him as he did it. I had no idea he was going to do it. He went from his stomach to his knees and then pushed his leg out from under him!! I can't think of anything else new right now. I will write when I have more.

January Summary

2006-01-01T15:33:00.000-06:00

January 4th 2006

I hope you all had a great Christmas and Happy New Year. Our Christmas was very good this year. It was so nice to spend it with my sister and of course very emotional. We got to see a lot of family and Blayne got to play with his cousins. He has a new baby cousin who was 3 weeks and he loved her and kept saying baby. He kissed his hand and then put it on her forehead. It was pretty darn cute. His other cousin is 9 months now and Blayne wanted to play with him but he was so tired and didn't have energy. Unfortunately the day we went home we all got the flu. It only last 24 hours thank goodness. Blayne may have had a touch of it but not bad. He did have a little cold though but seems to be over it now. He loved his new toys at Christmas. His birthday was also great. The family got together and had a dinner.
Some new things Blayne is doing this week; For the first time on his birthday he took his first few steps with a push baby walker!! We were so proud and everyone got to see it. Also the other day he pulled to stand in his crib. He can't do it for long though because he is so wobbly but I was so excited when I saw it. He is also singing. Before he used to hum along with his toys but now he does it when he is crawling for anywhere. He does really well with twinkle twinkle and he also sings his boat song (his favorite toy) he either hums or says ba ba ba to the tune. It is so cute. He is going to the doctor on Friday so I will let you know what they have to say.
In news with me, Bret and I have decided to go separate ways. It was a hard decision but we the right thing for now. Who knows what will happen in the future but right now I am just enjoying my little boy :) I know the right man will come along eventually.
January 10th 2006
Blayne had his check up with his pediatrician on Friday and he has lost weight! I was so disappointed. He is now 19lbs 8oz so he lost about 10oz. We are trying a cleft palate bottle until the 18th and if he doesn't gain they are going to put a tempory feeding tube in his nose. He just doesn't eat enough. He eats 20oz on a good day and he needs 30 or more to get enough calories to gain weight. It feels like a never ending battle. They said that if we don't get him to grow one, it isn't good for his brain and two he will never catch up on the growth chart. So, if he has to have a feeding tube then it isn't the end of the world.

He is going to the GI doctor on the 18th for an evulation so we will see what they say. No other news really, Blayne is just playing away with his new toys.

My sister:

She continues to do well and is enjoying being at home. My aunt is with her all the time and they have gotten very close. It is ncie to know someone we love and trust is taking care of her instead of a stranger. We have been so blessed with a wonderful family. Thank you for the continued prayers.

January 22nd 2006
I have some good and bad news
Blayne has his check up on the 18th with his doctor at the Children's Mercy hospital. Good news, the new bottle is working well for him and he gained 12oz in 2 weeks but he still needs to be eating 30oz a day to get his nutritional needs through his formula. He has been eating 20-26oz on an good day. They gave us some reflux medicine and they are also giving us a medicine to increase his appetite. If that doesn't help by the 1st we are going to do the feeding tube. They will train me to do a temporary one in his nose and if he tolerates that we will do that for 3-6 months. If he still needs it after that they will put a g-tube in his stomach. I know it isn't that uncommon, I have met a lot of moms that their babies have it.
Other good news; I have been on an email exchange board for parents with special needs children and I have met some wonderful people. One mom gave me a Rifton gait trainer for Blayne. It is a size medium and he doesn't quite fit it yet but once he does I know it will really benefit him. I also purchased a stander and a corner chair from a mother really cheap. If any of you have a special needs child you know how expensive these things are. Blayne loves his chair and his stander and has already uses them several times a day. We got a new puppy! He is a king Charles/cocker spaniel mix and so cute! He loves Blayne already and is going to be a great dog for us. We are also moving into our new apartment on the first of February, yeah! We are excited.
Now for the bad news; We had to take Blayne to the ER Friday night. His head has been growing faster than it should be so they are worried about his shunt working. They moved up his CT scan from March to February 1st but on Friday he was throwing up for no reason and was not sick and his forehead looks bigger to me so we took him in. We were there from 6:30 to 11:30! It took forever but there was a young girl there and I think she got in a car wreck and they were busy with her. She ended up dieing and it was just heartbreaking to hear her family. It is times like that when you realize how fortunate we really are. They did a CT scan on him and his ventricles do appear to be larger than before. It isn't an overnight emergency but it is likely that it is going to need replaced so we may be taking him this coming up week. I am going to be talking with his doctor tomorrow morning about it. I will let you know what we find out.

January 26th 2006
As I last told you we were worried about Blayne's shunt. I spoke with his doctor on the 23rd Monday and she said she wanted us to bring him in to be checked out. Anytime they are worried there could be a shunt problem they don't take it lightly. If it was true shunt failure they could die within 48 hours if not caught. I have been told that complete shunt failure is very obvious to tell and you can't miss the signs. They just said though that it could fail over a period of time and then turn into an emergency as the fluid presses on the brain. Blayne was acting ok except for the rapid head growth and throwing up, which he always does. To me it was just puzzling because he was on his new formula and no other food and throwing up.
We took him in on the 24th, Tuesday and they did tests all day long. They did the CT scan and they also checked his eyes. I guess you can tell by looking at the nerve in the eye. If it is swollen that can indicate shunt failure. Good news...no shunt problems!! They said that his ventricles are a little bigger but his brain has accommodated it and that if he is doing fine they leave it alone. If they were to take the shunt out and put in a new one his ventricles could collapse and cause brain damage because the brain doesn't respond well to it. If it gets to where his ventricles keep getting bigger then they will do something but we are just going to watch him over the next few months.
We did learn something new at the eye doctor. Blayne has Horner's Syndrome. It sounds a lot worse then it is. Blayne has always had different color eyes and I guess it was from having surgery with his shunt and the brain damage caused his eyes to be two different colors. All I know is they are beautiful but it finally explains why. It is also why his eyelids are droopy and one pupil is bigger than the other. I talked with his doctor while we were there and we have decided to put the feeding tube in his nose on the 1st of February. She said that he has gained weight but he still is not eating enough to further his development and will not keep up. I am really glad as I think it will really help him but I know that Blayne is not going to like it! The last thing I have to report is Blayne got a walker from his therapy the other day and he loves it! He can go forward and back and will stay in it for along time. It has been hard on my toes though! I will write more after the 1st.

December summary

2005-12-01T15:30:00.000-06:00

December 23rd 2005

Wow! I can't believe it has been that long since I updated my site. Things have calmed down quite a bit and after Christmas I plan on keeping the site updated weekly. I also plan on designing a brand new site. Ok well, since I last updated:

Halloween:

We had a really good Halloween. My mother, grandmother, Blayne and I all went to the Columbia Missouri Mall. Blayne was a bumblebee in his stroller and had tons of fun getting candy. When they would hold out the bucket for him to get something he would try to grab as many as he could! He would usually grab two suckers and bang them together. It was nice to be inside were it was warm. I
November:

The new formula that Blayne was on he loved and started to drink a ton. He had a check up on November 11th and he had gained and was up to 20lbs 2oz. She was happy with his gain so said we would wait on the G-tube. She wanted him to drink 4 cans a day to meet his 1000-calorie requirement and use that as his main source of nutrition. We were going to keep offering him food but try to get him to drink the formula as much as we could. Well, after about 3 weeks of being on the Peptamen he started throwing up. It is milk based but the protein is broken down really fine so the body won’t react to it. Since Blayne is so allergic to milk it bothered him. So back to the doctor we went. They gave us some samples of other formula that is broken down even more to just amino acids. We tried the Elecare formula and he used about two cans of that and started throwing up. So we tried the other one, which is EO28 and that, is what he has been on since and so far is doing well on it. He has gained weight too and is up to almost 21 lbs!!
His new thing this month was singing with his toys. He knows the tune to all of his toys and hums along. It is so cute. In November I decided that I was going to move back home. It is to hard being that far away and I need my moms help with Blayne. Bret and I are taking a step back and aren’t taking about marriage as of yet. We are just going to date and want to work on building our relationship. In June when his lease is up we have talked about him moving to where I am. So I started staying in Columbia full time and helped with my sister. She continued to get better. She got to spend Thanksgiving with us at the apartment and I have to tell you although we were so far away from home it was the best Thanksgiving ever because we got to spend it with her.

December:

On December 8th my sister got to go home! It was such an emotional day. She actually walked out of the rehab center with a cane! She can walk with it for short distances. Her speech is coming back slowly. The brain damage is what has caused her speech problems but they think it will all come back with time. She is doing great at home and my Aunt is taking care of her during the day. I am planning on making a website for her so all of you who are following her story can keep updated. As of right now I am staying with my parents but I am hoping to get an apartment through Public housing in the beginning of January.
Blayne is doing great this month. I think the formula is really helping and he is getting stronger. His speech has really taken off this month as well and he has learned so many new words. He learned car, phone, bomb, bath, bubbles, mel mo (Elmo), purple, gog (dog), his says woof woof and meows. I know he has learned more I just can’t think of them right now but he is starting to try and talk and I am so excited. Just this past week he has wanting to stand and is getting mad about it. Of course we hold him up but it is really hard for him though and he is getting frustrated. I am trying to get him a special needs walker through an equipment exchange so that should help.
He loves Elmo, Sponge bob and the Telletubies. In the Telletubies they say bye bye at the end and Blayne tells them bye bye and waves every time. It is so cute. He also learned how to blow kisses a few days ago and does it all the time. He says bye-bye and mah-aw with his hand. I can’t believe he is going to be two in a week! Time has gone so fast. Well, I have so many things to get done today. We are spending Christmas in Nebraska and are leaving tomorrow. We are going to get to spend it with my sister so it will be special. I will be sure to get pictures. I hope you all have a great Christmas and a wonderful New Year. I will be updating again soon.

October summary

2005-10-01T15:28:00.000-05:00

October 11th 2005
Lets see what is new, Blayne got his braces for his ankles and he is doing pretty well with them. He wears them for about 3-5 hours a day and we are working up to all day and just off at night. He doesn't like having socks on so they bug him sometimes but then he gives up. Last week we went to the CCVI School here which is the center for the visually impaired. It is a school. We went to a meeting and therapists watched the kids while the parents ate dinner and talked to each other. They all have kids under age 5 with disabilities. It was really nice to relate to other people that new what we were going through. Blayne did wonderful considering it was the first time he had been with other kids and no one he doesn't know. I was excited. Also we got good news.

Blayne's eyesight is getting better!! The prescription has improved significantly in his left eye. He still won't wear his glasses though. He had a doctor’s appointment today with a new pediatrician at the Children’s Mercy hospital. They weighed and measured him today and he is still the same size!!! It is so frustrating. I feed and feed and feed him and keep trying everything but he will not grow. He is 19lbs 4oz and 29 1/2 inches. At one point someone told us he was 31 inches and that was before we moved here so I don't know...he can't shrink lol. He is going to a new food allergy doctor tomorrow so I will tell you what they say.

My sister update:

She is still in the hospital but doing much better. I haven't seen her for a week or so but when I saw her last week she was much more alert. She was so excited to see me and kept looking at me and smiling. She defiantly understands what we say to her but it is just hard for her to respond. They got her trach out last week and she is now in a rehab center. They have stood her up a few times but she still can't move her right side. Please keep up the prayers!

October 27th 2005
Ok, I am back! I had been staying in Columbia to spend time with my sister and I just got back so Blayne could have therapy. I am going back on Saturday so we can celebrate Halloween there. Blayne is going to be a bumblebee. I will be sure to get lots of pictures. Blayne is doing good. He still isn't growing so they are putting him on a specialty formula. It is really expensive but we got back on WIC so they are going to pay for it. They just special ordered it and I picked it up at Target today. It came to 853 dollars for the month. It is 9 dollars for an 8 oz can so thank goodness for WIC. He tried it earlier and liked it so hopefully he starts packing on the pounds. It has 250 per 8 oz can. They also mentioned putting a g-tube in because he is not getting enough calories and it is not good for his development or brain. We are going back to the pediatrician on November 11th so I think we might talk about it more then. I don't want him to have a g-tube but if he has to he has to but it isn't a for sure thing though.

For the first time yesterday he got up on his hands and knees to crawl!! I was so exicted. He could only do it for a few seconds but that is fine, he will get there!! I am trying to get recent pics uploaded.I can't think of too much more happening with Blayne right now.

My sister update:
She is doing better. She is getting a little feeling back in her right side but is still pretty much paralzyed. It is so sad. She is working on talking to and is getting better but has a LONG way to go. It is so hard to see her like that. All of a sudden she is different. She is still there but it feels like she is gone because she isn't the same now. I dont know it is hard to explain. She really enjoys having us all there. They did a swallow study to see if she could start eating and she had a hard time with liquid. They don't want her to asperate into her lungs. Today they said she could start having applesauce and thickened juice so she is excited about that. Here is a story to tell you about how stubborn and Charlene she still is. Two nights ago she was left at the rehab by herself for about an hour(usually one of us is always there) she hates to have the door open in her room and always makes us shut it. Well we were gone and she decided she was going to get out of bed to shut it. Well, she fell and tried to crawl to the door to shut it. Luckily she didn't get hurt!

September Summary

2005-09-01T15:22:00.002-05:00

September 25th 2005
Can you believe I am posting finally!? Yes we are still alive. Things have been rather hectic and busy since moving. We got Internet shortly after moving into our apartment but I have had no time to update the site. Anyway, since I am home for a few days I am doing it now. Lets see, what has happened in almost four months...so much. First off I guess I should tell you that we love our new apartment and living in Overland Park. It was a huge change at first for Blayne and myself. Going from a small town to a big city and knowing no one and it was my first time living outside of the house. Things have calmed down though and we are used to the change.
I will fill you in for June to kind of break up my post since it is going to be VERY long:
June
Blayne did wonderful through everything. A huge change for him in us moving has been the change in his therapy. He gets four hours a week as apposed to 30 minutes before. He gets Occupational, Physical, Speech and an early childhood educator every week. He also has vision therapy once to twice a month and he also has a nutritionist once a month. It has really helped him and I have seen a huge change in how he acts now. The services as well as the doctors available for Blayne are wonderful up there as we live very close to a great Children’s Hospital. We are also joined to a lending toy library through his Infant Toddler services so we get to pick out toys to use for a month and take back. That has been really nice. So through June we just got used to the area and found out about the great things available for us.
July
July was an exciting and busy month. On July 4th Bret purposed to me and Of course I said yes! I so surprised but extremely excited. We have not set a date yet but tentatively we are talking about next summer sometime. Around the end of July Blayne got extremely sick. Since we moved he started throwing up a lot more. He has always had problems, he would throw up once every day or other day but he got to where he was throwing up once to twice to sometimes 3 times a day. It was always when I would feed him baby food so I thought maybe he developed more food allergies. He was starting to lose weight. I got him into a new pediatrician and they referred me to an allergy specialist but they couldn't get me in for 2 weeks. So we scheduled the appointment and waited. Well in the mean time he kept getting worse. Then it got to where on this one day he could not keep ANYTHING down. He was getting really weak and sleepy so Bret and I took him to the Children's Hospital urgent care. We were there for 9 HOURS and all the said was it was reflux and sent us home with Zantac at 11:30 at night. They didn't give him any fluids and he hadn't kept anything down all day. We were so tired we just went home and hoped the Zantac would help.
He had his allergy appointment the next day. When we woke up that morning his still could not eat or drink anything without keeping it down. He was SO sleepy and not Blayne. I knew something was wrong. We took him to the allergy doctor and she said that he definitely needed to be taken to the hospital and she was shocked and upset they did not do anything for him in urgent care. She said he was dehydrated and that he needed to be treated. So we went to his pediatrician and then they sent us to Children’s Mercy Hospital. They hospitalized him and hooked him up to IV fluids. At the time of hospitalization he was down to 18lbs 8oz! They said that his sugars were down to 51 and that was why he was so tired and lethargic. They did allergy testing on him and kept him overnight. The testing came back the next day. This whole time we thought he was allergic to Corn but that came back negative. We did find out though that he is allergic to Milk, Soy, Wheat and Egg whites. He is the most allergic to the egg whites. They said he could be allergic to corn though but since we have eliminated it from his diet it may not be showing up. I was so shocked that he was allergic to all of those things and kind of panicked because I didn’t know what he was going to be able to eat!
They kept him overnight the next day and once he started drinking milk they sent him home. They started giving him whole milk again before we found out the results and they said that if he did fine on it to keep him on that. So we went home on that but shortly after he started throwing up again so we switched him to rice milk. He had not gained weight in almost 9 months and hadn’t grown too much in length either. He would gain and then lost and then gain and then lose. He has not been getting enough nutrients! We were feeding and feeding him but his body was rejecting it. They referred us to a nutritionist but it took awhile to get an appointment scheduled. We kept Blayne on rice milk and started feeding him a few different things of baby food.
August:
Another crazy and busy month! Blayne did ok for awhile but then started to throw up occasionally so I stopped the baby food and just gave him Rice Milk until the nutritionist could come. In the mean time my Sister, Brother-n-Law, Grandma and Mother went on vacation. They had it planned for a while. My sister is a 4.0 premed student at K-State. She is very smart and driven. She wants to be a Pediatric Neurologist and wanted to go check out medical colleges for her graduate. She was really interested in Duke University in North Carolina so they planned a vacation to go there and check it out as well as some other colleges and stops on the way. They were having a great time and I was really looking forward to them coming back because on the way through they were picking up Blayne and my mom was going to watch him for a few days. I had not had a break since moving so I was so looking forward to it. The next day Bret Blayne and I went out to eat and then I went grocery shopping as Bret went to work. While in the store my stepfather left a message on my phone that I left in the car. He told me that my family had been in a terrible car accident.
The Wreck

It was August 13th. The wreck happened at 11:30 in the morning. At first I had no idea what happened and could not get a hold of anyone since I heard the message. I really thought they had all died though and I was freaking out. Here is what a found out through and this is the whole story of what happened. They were driving on I-70 and it was raining. I am sure if any of you have drove on I-70 you know how bad it is. The road is bad and narrow and there are tons of Semi trucks that go WAY to fast. Anyway, My brother-n-law was driving and my grandma was in the front seat passenger side. My sister was behind my brother in law and my mom was behind my grandma. My mom and sister were sleeping and my grandma was reading a book. It was they end of vacation and they had all spent enough time together ;) and were ready to get home. Ahead of them up about one mile a semi clipped the side of a car and that caused an accident. So about a half a mile back there was another wreck that resulted from that wreck. They did not mark it or direct traffic so no one knew as then came up to it. My family came up over the hill and could not stop and rear-ended the car in front of them. IT didn’t do any damage but just a few seconds later a semi-truck came over the hill and he said he was going 55 mph (but he was going much faster) he hit our car and pushed them 300 yards to the first wreck. He pushed them through tons of cars a long the way. It just smashed the car together. He hit them so hard that it totaled his semi! If you see the pictures your will not believe they all lived. We didn’t know too much at the time of the accident. My grandma called my step-dad and said Charlene was the worst. My mom and my sister lost conciseness during the accident. My Grandma did not get hurt at all and was able to help my sister. Derek got out but they had to cut the rest of them out with the Jaws of Life. They took them all to the Columbia Medical center in Columbia, MO. It is a great hospital and it is very good that they were close to it when it happened.
Bret Blayne and I went there as soon as we knew were to go. It was a 2 hour and 15 minute drive. My mom got broken ribs as well as some broken bones in her back but they are going to heal on their own they are just painful. My grandma just got a few bruises and bruised ribs; Derek got a cut on the back of his head that required staples. My sister was the very worst. She was taken to intensive care right away and was in really bad shape. It was so hard to walk in and see her like that. She had multiple facial fractures. She hit her face really hard and shattered all of the bones by her eyes and forehead and nasal cavity. She had one little cut above her eyebrow. She broke her rip femur all the way through by her hip so they consider it a broken hip. She also had collapsed, punctured lungs. She was in a coma. It was a few days later that we found out during the time of the accident her carotid artery and her neck was severed on the left side so no blood was getting to her brain and she suffered a massive stroke. She has quite a large part of brain damage on that side. I am trying not to go into to much detail. I know this is a lot to read so I will just tell you the major things that happened.
A few days later Charlene was stabilizing and still in a coma. We had to go home because Blayne had therapy. It was only about two days later she took a turn for the worse and we had to get up there so fast because they really though she was going to die. Overnight her heart rate went up to 188 and stayed there. Her pressure in her brain went up to 38 and it should be at zero. They went in and did exploratory surgery and found she was full of fluid in her abdomen. Her gall bladder was enflamed and infected before the wreck but we didn’t know. At the time of impact the seat beat hit it and damaged it and it the infection slowly got into her blood stream and caused sepsis. So once she got over that she started to slowly get better and they did all of the other surgeries that next week to fix everything else. It took her awhile to wake up but she finally came out of her coma. The stroke caused her to be paralyzed in her right side and she cannot move it. We do not know if that is just temporary of permanent.

September

We met with Blayne nutritionist in August after the accident and she said that Gerber baby food has hidden fillers in it and if it isn’t very much they do not have to list it and it is usually Soy based so that is why Blayne was getting sick on the baby food. Prior to him getting sick he was also stating to eat bread and banana bread, which has milk, wheat and egg in it. So now I am making his baby food from scratch and he is on rice milk and he is doing great. It is so much work to make the baby food but it is so worth it to see Blayne healthy and happy. His coloring is better and everything. I do not know how much he weighs but I know he has gained although he is still a little guy. He has 5 teeth now J 3 on top and 2 on the bottom! He is working on getting a lot more right now and chewing on everything. He is just starting to eat table food occasionally and doing well with it. He also snacks on rice puffed cereal. It is hard because he can’t have a lot of things but they said he should out grow the allergies by the time he is 6. That is a long time though!!
He is talking up a storm now. He loves to say bye-bye baby. He goes through spurts of his favorite words were he won’t say some for a while though. He still isn’t completely crawling. He is too weak to push up on his arms but he can army crawl REALLY fast and get into anything and anywhere he wants. He can sit up by himself for quite awhile although he is still floppy and it is hard for him. He is doing really well on standing holding onto things if you hold on to him but he can’t pull up by himself but we are working on it. He was fitted for braces for his legs to him stand and to straighten his ankles. We will be getting those next week! He has changed so much and is getting so big! I promise I am going to do better about updating the site!!

My Sister:

Ok since waking up from her coma, which has been awhile, she is slowly getting better but it is going to be a long process. Her physical injuries are healing it is just the brain and the stroke that is going to take a lot of time and rehab. On September 6th we celebrated Charlene’s 22nd birthday. It has been 6 weeks today since the accident. She has had a tracheotomy for about 4 to 5 weeks now and they have just recently tried to cap it so she can breathe on her own. The past few days she has been doing great. They capped it the other day and she said her first word!! It was a huge step because the speech part of her brain is damaged so they did not know if she would ever talk again. She said Hi to my aunt. I have not seen her for a while and I miss her. It is hard with her being so far away. We had to come to Lindsborg for doctor’s appointments and it is 6 hours from here to Columbia. They are putting her in a rehabilitation center there and they may do it tomorrow! She is really excited about that and it is one step closer to going home. They also took her outside for the first time today. Our lives have changed so fast and just one second everything changed. It still doesn’t seem real. It is going to be a long process and tiring and the hardest part is weighting and having patience and not knowing how it is going to turn out. I know first hand from everything with Blayne. We just have to take it one day at a time and pray for the best. She is so stubborn though and I know she will get through it. I will keep you updated as things progress.

June Summary

2005-06-01T15:20:00.000-05:00

June 3rd 2005
Hello!! I just thought I would drop a quick line before I am without internet for awhile. We are moving today so things have been a little busy and crazy here. We took one trip of stuff up the other day but I need to finish packing the rest I don't know where to start! Blayne tries to help by getting into everything. We are moving the rest of our stuff today and staying there for the first night so I won't get to be on the computer for a while. I think I am going to go crazy!! We will have the internet in a few weeks though so I will let everyone now how things are going then.

May Summary

2005-05-01T15:16:00.002-05:00

May 5th, 2005
I have some exciting news!! Blayne and I will be moving to Kansas City June 1st. That is where Bret is living right now and we want to be closer to each other. It is really hard going back in forth several times a week when it is 3 hours away and gas is so expensive. Although I am nervous, I am also very excited. We are moving into a very nice apartment complex in a nice part of town. It is also quiet there. It is going to be a big transition for Blayne and I both but it is going to be very good for us. Things are going to be crazy this month and next month getting ready and moving but hopefully once everything is settled I will be able to update more.

We have several doctors appointments this month so I will try to keep you updated. In Blayne news, he is really army crawling. Before he was just kind of getting around a bit but now he can really get to something fast if he wants it. We are continuing to work on his arm and back strength. He is also getting some teeth finally!! They haven’t broken through the gums yet but they are really close. He is getting the top left one and the two bottom ones. Not to much longer and his gummy smile will be gone!!

May 11th 2005
Ok, some wonderful news!! Yesterday Blayne had an eye check up with Dr. Lawrence. He hasn't worn his glasses for quite sometime now because he has outgrown them plus he hates them. We have all noticed though that he is doing great with his eyes as far as the straightness. The surgery really helped and they hardly ever turn except when he gets really tired. I was anxious to see what his doctor had to say. They had to dilate his eyes, which he hates, and it upset him. As we were waiting Blayne thought he needed to touch everything in the room, all of the expensive equipment! He also managed to pull a poster off the wall too. He did not like to be examined this time. He kept pouting and crying and it took three of us to examine him. I held him while my mom distracted him and Dr. Lawrence look at his eyes. Anyway, here is the great news. His right eye has gotten better in his prescription!! The left eye is still the same but that is good since it hasn't gotten worse. We need to continue to patch him and get him to wear his glasses as much as we can but she said he is doing great. We are getting him a new pair of glasses on Monday. Dr. Lawrence also said that is was wonderful how he was reaching out to grab things and was so interested in his surroundings because they meant that his vision was developing well. It was great to hear that.

In other news, Blayne is finally getting his first tooth in!! I am so excited for him to get some chompers on him. He is almost 16 1/2 months old so it is about time. He started getting his top left front tooth about a week and a half ago. He doesn't like to let me see it lol so I really have to tickle him to get a good look at it. Two days ago though he chomped down on my finger and I could feel it has finally broken through the gum. You can barely see it but it is there. I don't think it will be too much longer and he will have a mouth full of teeth. He is going to look so much different and older.

He also got his first professional hair cut. We trimmed it at home before his pictures but we didn't take enough off and it grew really fast. It was really time for him to get it cut. Everywhere we take him in public people think he is a girl but I think it is because his hair is so long! He didn't like it at first and cried but my mom distracted him and he was all into his toys and didn't care. He looks so cute and clean and like a little boy. He was starting to look like a little messy marvin!

May 25th 2005

Ok, here is what has been happening. Blayne had a checkup with his pediatrician last week. He was 20lbs 3oz and 30 inches long. He hasn't grown much in awhile but they tend to slow down on growing at age one. They grow really fast in the first year, plus he is always on the floor rolling and army crawling so the little food he eats he burns off! He looks great though, just small for his age. The doctor said that he is drinking too much milk and needs to be eating more baby food. We have been trying but Blayne is the boss and if he doesn't want it he won't eat it. Once he gets more teeth I am sure he will eat more table food. He is getting another tooth on the bottom too! He gave me a list of doctors in Overland Park so I will have to find him a new pediatrician up there.

On Sunday my mom, Grandmother, Blayne and I all left to go to Denver Colorado. My grandmother has seen a gynecologist there for over 30 years and he is very good doctor and did surgery on my grandma. My gynocologist said that I needed reconstructive surgery done or I would never been able to have another baby. He wasn't sure were to send me though because they don't deal with that much. So I went to see the doctor in Denver. It was a very long drive about 7 hours but we stopped a lot to stretch and get Blayne out. He was very good on the ride. I couldn’t ask for a better baby. I was nervous about my appointment but was glad to go to a good doctor. My appointment was at 9:30 on Monday morning. The doctor was very nice and very knowledgeable. He has delivered over 50,000 babies. I won't get into all the medical stuff but he examined me and I talked to him for about an hour. He gave me very good news. I will be able to have more children someday. He said that they would watch my pregnancy close but he said that it isn't going to be a problem and that I don't need surgery. He said that they can do it but they isn't any reason to. I was so surprised and very happy. It is wonderful news and a big relief.

It was a long drive home for Blayne but he was very good on they way back too. He has been tired today though and catching up on sleep. He learned a few things on the trip. He learned how to say Da Da and he has been using his feet to pick stuff up that he can't reach with his hands. He also started to hold his own bottle, which he has NEVER done. He also learned to play peek-a-boo by himself. He holds the blanket up over his head and holds it there and then shows his face with a big laugh, it was so much fun. This weekend we are going to my grandmothers in Nebraska for a family get together and then I am moving next week so things are going to be busy but I will try to post.

April Summary

2005-04-01T15:10:00.001-06:00

April 11th 2005
Wow things have been so crazy here. Sorry I haven't updated in awhile. Lets see, I will try to remember what has happened since I last posted. Last Friday on the 1st. I went to Manhattan with Blayne to spend the night and next day with my sister and brother and law. It was the first time I drove by myself with Blayne in the back seat. I was a little nervous about how he was going to handle it but he did just fine! We had a really good time there and the weather was beautiful.
I am so excited to report something new Blayne learned to do. While at my sisters he grabbed my hands to pull himself up into a sitting position. He has been doing that for a little while now but this time he pulled himself up to stand on his feet. I was so shocked. He has been doing it ever since. He has also learned how to say cracker. He is also saying ah-ma for (grandma) when he wants me mom or looks at her. When he wants me or see me to pick him up he says MA MA or MOUM really clearly. He is really close to sitting up on his on too!
Lets se, last Tuesday April 5th my mom, Grandma, Aunt and I all went to Kansas City for a little vacation and to get Blayne pictures taken. My boyfriend Bret joined us and then that evening we all went out to eat at TGI Fridays. It was late in the evening and not to busy. We put Blayne in one of the restaurants high chairs. I didn't think he would be able to sit up but he did just fine. He was so cute!! Unfortunately I forgot the camera and missed a lot of cute moments on our trip. After we ate we went to the mall for an hour and since it was late and not very busy we took Blayne in with his stroller.
On Wednesday morning we took Blayne to get his pictures taken. He loved the lady that was getting ready to take our pictures he kept smiling and talking to her and wanting to go to her. She started our shoot and she had us posed with me on my stomach with my head up and Blayne on my back on his tummy with his head up. He was fine for a few minutes but then he flung himself back and rolled off of me and hit his head on the hard floor. He was very upset afterwards and crying. He has started to do this really cute but sad fake cry where he tries to make himself cry and blinks and sticks his lip out. He kept doing that. I was so afraid that the pictures didn't turn out but they were perfect!! They were a little more expensive this time so I didn't order as many but luckily I have 3 more months to order more online. If you would like to view his pictures please visit the site below:
After we got our pictures taken we went to eat at The Rainforest Cafe. It was such a fun place to eat; I really wish I had, had the camera. It is a restaurant that is made to look and sound like a jungle inside. The walls look like it is raining and they have aquariums throughout the place. They have big fake Elephants that move and make sounds. They also have fake gorillas and a cheetah. Sometimes sounds go off for rain and thunder. Blayne was so tired though he fell asleep and slept through all of the sounds. I would love to take him back when he is bigger. The next night we stayed at a casino in Kansas City so my family could gamble for a little bit. It was a fun place to stay. It was a big place and had restaurants and a movie theatre. Blayne, Bret and I went and got something to eat and got Blayne some really yummy Banana Ice cream. He loved it so much. The next day my family went home and I stayed a few extra days with Bret.
It was nice to have a break but by Saturday I was ready to come home and really missed Blayne. Unfortunately Blayne and I both caught colds somewhere in public. I think I gave it to him when we shared the ice cream and I feel so bad. He hasn't been sleeping well or eating well and has lost some weight. Hopefully he will be feeling better soon. I am pretty much over mine. We go to the Pediatrician on Friday so I will let you know what they say.
April 24th 2005
Ok, I am finally updating..sorry! I am still trying to get his other site going but I am having problems with my website hosting so it has slowed me down a bit. Last Friday we took Blayne to the pediatrician and he mainly was just asking about the cold he was getting over. They weighed and measured him. He is 30 inches now and as of today he is back up to 20lbs. It takes forever for him to gain it but he can lose it really fast. I wish I had that problem lol. He is scheduled to get his immunizations sometime in May. We haven't had a lot of appointments lately but we have been busy. Since the weather is getting warmer we have been going more places.
Blayne is army crawling really well now. He is also getting really good about feeding himself crackers. Still no teeth. His doctor said that he would probably get them all at once. I love his gummy little smile but it is time he got some teeth so he can eat more food. We are still working on sitting up. He does pretty good sitting in sometime but sitting up on his own he can only do it for a few seconds and then topple over. We are working on weight bearing on his arms. Once he gets that down I think he could start crawling if he really wanted to. He is really trying to talk now. His words are getting clearer and he knows what things mean to communicate with us.
Today I gave him some milk in a cup and he looked up at me and said good. We are working on him saying his D's. Usually they say da-da and he did in the beginning when he started babbling but he doesn't anymore. Bret and I took Blayne to McDonalds for the first time the other day. He loved it. It wasn't very busy but there was a little boy probably about 6 in there and was sitting right next to us. Blayne watched at him the whole time and then tried talking too, it was so cute. This last weekend we went to Red Cloud to celebrate my grandmother’s birthday. It was nice to get away and Blayne always loves to see the family. He sure missed having all of his toys though so he has been busy all day playing.

March Summary

2005-03-01T15:02:00.001-06:00

March 1st 2005
A new month!! I'll say it again.. time is going so fast! We are really looking forward to the weather warming up and getting out doors. I am sorry I haven't posted in awhile but I haven't had anything new to tell you about but no news is good news here! We haven't had any doctor’s appointments in awhile. This month he will continue to have his physical therapy once a week. He also has an eye appointment at the end of the month. He has RSV shots in the middle of the month but other then that the month is free which is nice.

Some new things that Blayne has learned to do is pick his nose! It is so funny. I keep telling him that he is too little to be doing that but he doesn’t listen. :) He also loves to stick his tongue out all the time. He is getting very good with his vocal skills. He is learning how to say good and he can also say hat. He likes to clap his hands. He has gotten his favorite Baby Einstein tape memorized and he talks to it and there is a part where a clock goes tick tock and a few seconds before it starts he clicks his tongue to do it. Last week I decided to buy him a walker because I thought he might be ready for it. I was so excited and stayed up to put it together. The next morning I put him in it and he was too short. He will have to grow about another inch before he can put enough weight to make it move but he likes to sit in it and play with the toys. We got a new camera and are trying to figure it out.

March 7th 2005
I don't have any big news to share I just though I would let everyone know how we were doing this week. I came down with a head cold over the weekend. It isn't a bad cold just more annoying then anything. I get a running nose then it goes stuffy and I occasionally get a headache. I have tried my hardest not to give it to Blayne but I think he may be coming down with it. This will be his first cold but at least it isn't a bad one. I guess I do have some exciting news, Blayne got to go Wal-Mart for the first time tonight. My mom was in buying food and Blayne and I were waiting in the car. He was fine at first, we wait in the car all the time but all of a sudden he got so upset. He was doing his cry like he was hurt and then he starting screaming. He NEVER cries. He was so upset and wouldn't calm down so I ran into Wal-Mart to get my mom so we could leave. I had him covered with a big blanket and everyone was starting at me lol. As soon as I walked in he stopped and was trying to peek his head out to look around. I found her and we ran into a person I used to work with so she stopped to talk to us and see Blayne. We were in the pop aisle and he wanted to touch everything. We were there for about 15 minutes. It was quite an adventure to say the least.

Something else that is exciting, Blayne hit the 20lb mark. He is getting so big. I think he is finally starting to teeth. I see little buds coming up but I still think it will take awhile for them to come through. He is talking like crazy. He says goone(done) with a g lol. Everything is with a g. When he is done with his bottles and food he says it. He also says go-go for going bye bye and he says good. He also says up sometimes when he wants up. He also loves to clap his hands. His eyes are also changing. They have always been different colors but his left one is getting kind of brown while his right one is green. They are really pretty.

March 13th 2005
Well I am not sure if Blayne ever got my cold or not. If he did it wasn't very bad. His nose was a little stuffy but he never acted like he was sick. Last Wednesday he had his monthly check up with his pediatrician. He is really happy with how well he is doing. He said that he has improved in all of his areas since the last time he saw him and that is eyes look really good. He said that we can start trying him on whole milk in his cereal in the morning and if he does well with that he can start having one bottle a day of whole milk in place of his formula.

He also had physical therapy that afternoon and they were also very impressed with how he has improved. We adjusted the seat of his walker a little bit and he can push backwards in it on the kitchen floor. He is continuing to improve on his vocal skills. He can say grama (grandma) and ball. He is gotten to where he can communicate with us. He says mama when he wants me and ba ba when he is hungry and he also says done when he is finished eating and doesn't want anymore. I just can't believe how fast time is going. He will be one year adjusted at the end of the month and time to get his pictures taken again. It seems like we just got them done!

Last Thursday he got his RSV shots. I wasn't able to be there for him. My mother took him but she said he did great like he always does. I went away for a little vacation to visit a great friend in Kansas City. It was hard leaving Blayne but it was nice to have a break. I have only left him a few times since we have been home from the hospital. I talked to him many times on the phone while I was gone. By Saturday I was ready to be home and Blayne also couldn't wait to see me.

Something exciting that Blayne has learned to do is army crawl!! He just started to do it when he is on the floor and wants to get a toys that is out of reach he works his way up there. Hopefully crawl isn't to far away but his back is still weak. Overall though his muscle tone has improved a great deal. I am not sure what the schedule is like for next week but I will let you know how things go!!

March 20th 2005

Wow things have been crazy here lately. Friday Blayne got to go into his first store. He has gone into a few stores that aren't very busy for a few minutes but we never keep him long and it is when it isn't busy. He went to the Zoo but it was outside, the Carter store, a kitchen shop, once to a Mexican restaurant and the twice to a Chinese restaurant other then that he has never been in public except for doctors offices. It was exciting to take him out. The weather was nice and Blayne loved it. He looked like such a big boy in his stroller. I can't believe how much he has grown. He was so excited when we went in, he wanted to touch and see everything. I bent down to talk to him and he pushed my face out of the way to see. He was taking to the candy and wanting to touch it. We also got some homemade vanilla ice cream why my mom aunt and grandma finished shopping (My aunt has sugar diabetes and wanted to get sugar free candy) so the had a lot of fun. Blayne and I went and sat in the sun and ate some ice cream. I gave Blayne some; another first and he loved it. It was a really fun day.

We celebrated Easter on Saturday with the family because it was the only weekend it would work with everyones schedule. It was a nice day and nice to get together with everyone. Blayne was a little fussy though but we all thought he was teething. At about 4pm he was taking a nap he was breathing kind of funny. I just kept an eye on him. When we put him to bed that night he was breathing funny again. I just laid in bed next to his crib and watched him for about an hour. It started getting worse. He was restricting with each breath like it was really hard for him. He was also wheezing a bit. I rocked him until 3 am. He didn't have a fever or congestion he just acted like it was really hard to breath. After awhile he started breathing really fast like he was hyperventilating so I woke up my mom. We sat with him and called the doctor and they said just to bring him in to be looked at. We got there at 4:30am and did get to leave until 7:30!! It took so long and we were all so tired.

They said that Blayne just has a virus that turned into bronchitis. They did a breathing treatment and took chest x-rays. He didn't feel good and they kept bugging him. I had to take off his pjs for the x-ray and put him in a holder. His little feet were dangling and his arms were in the air and he was crying. I felt so awful. They brought him some medicine to take orally. I got one down him and the next one I tried and he spit everything up. They then ordered a shot for him. The nurse was new and didn't do a very good job and he got very upset. Needless to say it was an adventure!! We are continuing to do breathing treatments here at home and giving him antibiotics. I feel bad that the first time we took him out he caught something. It was going to happen eventually though and I am just glad that we caught it early.

March 27th 2005
Happy Easter!! It doesn't really feel like Easter here for us since we celebrated it last weekend. Here is the update for the week. Blayne is over his virus. He never got REALLY sick he was just fussy and tired. He never got congestion or anything. I think we caught it early and the antibiotics helped. Unfortunately, the antibiotics he had to take gave him diarrhea. He has lost a little weight over it but is starting to gain it back.

He had his first hair cut the other night!! It was time, it was so unruly. Technically it isn't his first hair cut. He had it shaved many times in the NICU but it was his official 'first' scissor cut.Currently I am working on a new website for Blayne, one that I started from scratch. I have been slacking a bit here but I am hoping to have the new one up and running soon. I guess that is all for now. I will update when I have more news.
March 30th 2005
Wow another month gone by again! Blayne had an eye appointment yesterday morning. She said she was happy with how he was doing. His eye prescription is still the same and just to keep trying to get him to wear his glasses and patching him for a period of time throughout the day. We are still just going to give the brain time to adjust his eyes but they have improved a great deal since the last time she saw him. She couldn't believe how big he is getting either!

Yesterday as I lay on the couch with him taking his nap I watched him breathing and thought back to where we were a year ago. At the exact same time one year ago he was having emergency surgery to remove his shunt that was infected in his head. It would have been his due date if hadn't of been born early. It is amazing how far we have come in a year. I think back to the times I never thought we would get here and it is amazing. Today we had physical therapy but it was a short visit. They were please with how well he is working on sitting up though! Tomorrow Blayne will be 15 months old!! YEAH so that means he is 12 months adjusted. We are taking a trip to Kansas City next week for a few days and are getting his pictures taken.

February Summary

2005-02-01T14:56:00.000-06:00

February 1st 2005
Today Blayne had an eye check up to see how they have positioned from his surgery. His left eye which was the one that was turning in the most looks great. The left one though which was his good eye is starting to turn out. It doesn't do it all the time but occasionally it wanders off. Dr. Lawerence said that he is doing great we just need to work on tracking with him. His brain is still trying to adjust and we can try to help strengthen it. She said we need to start patching each eye for 30 minutes a day without his glasses to force his eyes to work. I don't think not wearing his glasses will be a problem! She is going to check him again in 8 weeks unless we see his eyes getting worse we have to call her. She said we are going to try and strengthen it but if it continues to turn or get worse we will have to do a second surgery to reposition it. We knew this was a possibility though.

In other news, I got Blayne a jump thing to put in the doorway to bounce. I haven't bought him one because I didn't think he was strong enough to jump in it but he is getting so bored in his bouncy seats and he is getting so heavy for us to hold I decided to buy one. We put him in it and once he felt his feet he started putting weight on them and bouncing! He loved it and it was so exciting. That was the most he has used his legs. I will be putting pictures on of him in it. Something new he has started doing is shaking his head like he is saying no. I don't think he puts the two together though he just likes to shake his head. He has gotten really good with his hands and transferring toys from hand to hand. A few months back I bought him a Baby Einstein video and he could care less about it. The other day I came across it and decided to put it in and he LOVED it! He just sat mesmerized for the whole 30-minute video. There is on part where a green puppet pops balloons on a back background and the first time it scared him. He gasped and then looked at me and laughed so hard. Now every time he was it he just smiles and smiles every time a new balloon pops, it is so cute. Tomorrow is physical therapy so I will let you know how that goes!

February 6th 2005

We went to visit my grandmother in Nebraska this weekend. After many complications with Blayne's 'big boy' car seat it arrived just in time before we left so he was comfortable for the 2 and a half hour ride there. He did really well and didn't fuss at all!! We were nervous about taking him there because there is something in the air that always bothers my asthma and others in the family as well. My grandma also has an old house and two big lab dogs who shed so we didn't know how it was going to go. The first night Blayne didn't want to sleep because he wasn't used to the house. He finally went to sleep around 3:30am and got up around 9:30am. He was tired throughout the day but would not take a nap in fear of missing something!! Other family members were in town too that we hadn't seen for awhile and it was so nice to see them. Blayne loved them all!

He slept better on the second night but he started getting congested and I could hear him breathing as he slept. He was ready to come home today. We woke up to find it raining and turning to snow!! We hurried and got our stuff together and left. The first 30 miles were pretty bad but after we crossed the Nebraska line it was warmer and just raining. Blayne slept on the way home which was nice. He was very happy to come how and has been squealing and playing. He missed rolling on the floor!! It was nice to get away for awhile though. We have some appointments this week so I will post and let you know how they go.

In other news: Last week I got some heartbreaking news. With all of the complications from my delivery and the damage to my cervix I have been told by a few doctors that my future pregnancy may be difficult and complicated. I now have a new gynocologist and love him. He examined me once since having Blayne but last week I had a more in depth exam so he could take a good look at my cervix. I was nervous and was expected for bad news but what he told me was devastating. My chances of having a successful pregnancy again are very slim. If I were to get pregnant right now it would end in miscarriage because there is nothing to hold the baby inside. I was just shocked and wanted to cry and took in everything he said.

He said that later down the line when I am married and thinking about having more children and really want to try they could do an operation to try and repair it. I would have to wait a year to heal and then they would decide if I would be able to try or not. They would put a cereclage in right in the beginning and I would more then likely be on bed rest for the entire thing and even then I will more then likely have a preemie or it deliver too early to be viable. I just can't handle the thought of having another very premature baby or losing another one. He said the surgery would be experimental and not guaranteed to work and I would have to decide later if it is something I would like to do.

Needless to say I got very upset. It upsets me to think about it. Ever since I was little I have dreamed of having a big family. Anyone who knows me knows I love children and wanted to have more. I had a really rough pregnancy this losing Jaidyn, Blayne coming so early, being single so many things. Blayne hasn't been a 'normal' baby. I had to sit and watch him grow for 4 months before he got to come home. Everything he has gone through. Everyone kept telling me don't worry you will get married someday and have a loving husband and more babies. I really wanted that to happen. I know that God will give me a special husband someday and I am so happy that I have Blayne but yet it is hard not to get upset about it. I dreamt for having a full term healthy pregnancy, watching my belly get huge and bringing a healthy baby home not having to worry about everything and just watch them growth. We are getting a second opinion from a doctor in a bigger city. I am sure they have dealt with more things like this although it is rare. Also in the future they may have something to help me. I also know that just because the doctors say something doesn't mean that it is right Blayne is living proof of that. God has a plan and I just have to trust that.
February 11th 2005
Ok, this week was busy! I am sorry this is the first chance I have had to sit down and write an update. We had several appointments this week, not just with Blayne but all of us. He had physical therapy on Wednesday and this was the therapist that only sees him once a month. She was so happy with what he is doing. She told us that he has progressed a lot in the past two months. I guess it is hard for us to see it because we are with him everyday but I have noticed his back muscles are getting stronger. She gave us a therapy ball to work with him on. He still can't sit up by himself but we are working on it. She seems to think he will be army crawling next. We have been working on it but he still likes to roll everywhere.

Thursday was a very busy day. We had to be at the doctor’s office at 9:00am for a monthly check up. They were very happy with how he is doing. He said just to start trying to give him more texture, to mash up table food and let him feed himself. He loves to feed himself but he doesn't done well with texture so we haven't tried, plus he has no teeth yet LOL! We tried yesterday though with carrots and he did really well and chewed it with his gums! His doctor also said that He thinks that Blayne may have developed some reflux. He has been spitting up quite a bit lately but he said by this age they should be outgrowing it. He gave him some medicine for it and we tried it today and it broke him out in a rash!! I guess we will have to call and see what to do. I have also been researching water therapy and I think Blayne would really benefit from it. It will help strengthen his muscles. I asked his pediatrician about it and he said yes, that it is great therapy and that is would be wonderful for Blayne. So sometime next week we are going to take him to the YMCA when it isn't busy. I know he is going to love it because he loves his bath times!!

Right after his check-up we had to be at the hospital for RSV shots. That is always a long ordeal but luckily we were the only ones at the time slot so it went faster. Blayne did great with them, he hates getting it shots but he does really well with it. He is such a trooper!! After the RSV shots we had to come home for my appointment. I have been struggling a bit with depression and decided to get some medicine for it. I have struggled with it in the past and it runs in the family. Now don't think I am crazy or anything :) I just have a bit of the blues and find myself either very tired or not at all. I just started the medicine so hopefully it helps.

In other news with Blayne, I can't remember if I posted about this or not but a few months ago I purchased a Baby Einstein tape for him and he could care less about it. A few days ago I came across it and thought I would stick in in the tape player to get some stuff done while he watched it and he loved it!! He was just mesmerized by it and watch the entire thing straight. He was giggling and clapping his hands together and squealing. The tape runs for 26 minutes and he will watch the whole thing and then want to watch it again. He has been watching it for about two weeks now everyday. We are able to patch one of his eyes when he watches it and he doesn't even know and it helps track his eyes. I purchased a set of 15 DVDs for him and they just came. He likes some of them but the old tape is still his favorite. If you have little ones I defiantly recommend them to you, they are wonderful!

Lets see, he has also learned how to scream and he thinks that is wonderful. Oh about a week ago I taught him how to do a thing with his lips and he does it all the time now. I got it on video clip and will be putting it in the videos. It is so cute. I know he is doing a lot of new things I just can't think of them right now!

February 15th 2005
Blayne had physical therapy yesterday and again they were pleased with how he is doing. She said his back has gotten much stronger since she last saw him. I also wrote down a list of things that Blayne is doing that I would like to share with all of you! He can wave bye bye now and it is so cute! He has also learned how to take his diaper off lol. He gets his little fingers hooked on the diaper and pulls the tabs. He also started to say go-go because we always saw we are going to go bye bye for appointments and he loves to say go go now. He wakes up saying it sometimes. Some other cute things he is doing; the other day the cat was meowing and he was just listening so I showed him how to say it and he was watching my mouth and trying really hard to do it. He figured out to raise his voice and did it!! It was so cute. He has also learned how to scoop his baby food to feed himself. He usually just makes a mess though but he loves to scoop. Also we were watching a Baby Einstein video the other day and they were working on counting. I was counting along with them and Blayne was listening and the third time around he said it clear as day thee & for (three & four) I was amazed and looked at him like what just came out of your mouth lol.

Another thing I am very happy to announce is Friday night he was lying on my lap and he sat up by himself. He was lying on his back on my lap and pulled himself straight up like a sit up to sit up. I was so impressed. He is just doing so well!! The rest of the week we don't have much going on which is nice.

January summary

2005-01-01T14:55:00.000-06:00

January 3rd 2005
We made it! I hope this year is just as rewarding but smoother sailing. Blayne had a wonderful birthday. Time has gone so fast, I can't believe he is a year old. He has come so far. He is working on sitting up and rolls everywear to get things he wants. He has gotten to were he wants everything!! We are trying to teach him how to say grandma. He has been saying MA MA for awhile now. Sometimes he will say gam MA or just MA or BA and he thinks he is saying it! He also said bye the other day. Everyone was telling him bye and he said it clear as day. He also sounds like he says hi sometimes when you say it to him. Sometimes he will just start talking gibberish and then just laugh and laugh. He thinks he is talking. His birthday party was pretty small. It was hard because it fell on New Years eve and a lot of our family and friends live far away. It was so fun to celebrate though. Blayne loved the decorations and his balloon, opening gifts and he liked the frosting on his cake. Unfortunatly, I didn't realize the decorating icing had corn syrup in it and if you remember, he is allergic to it. He didn't eat very much at all just tasted a few of his fingers with it. That was on Friday. Then Saturday he started spitting up. He spit up once today but seems to be feeling better. So he hasn't gained weight for awhile. He was up to 18lbs then lost because of his surgery and tonight he weighed 17lbs 15oz. He is getting so big though!! He has come a long ways since last year when he was only 2lbs 5oz.
January 9th 2005
Blayne had a checkup Friday at his peditrician. He is currently 18lbs 3oz and 29 inches long. He had to get some immunization shots and he wasn't very happy about it. He is usually pretty tough but he was tired and cried a lot but I don't blame him he had to get 3 of them! Then we had to go to the lab to get his blood drawn to do his one year checks. I am not sure what all the were checking but I just know he didn't like it. By this time he was tiried, hungry and very upset! I had to hold him down and I felt so bad I was shaking. His peditrician is very happy with how he is doing and said to start trying to feed him more table food. Ground up of course because he still doesn't have chompers! He is starting to try and sit up and it doing very good and he is also putting more weight on his legs when we hold him up. He will also pull himself up from his back to sit if you pull his hands. I just can't believe how big he is getting! Sorry I haven't gotten his 1 year birthday party pictures on here yet. I have been rather tired lately. I know everyone is anxious to see them and I should have then on sometime this week. We are also going to get his pictures taken professionally this week so I will let you know how that goes. I also did his hand and foot prints this month and will do another before and after so you can see how much he has grown so keep checking back!
January 16th 2004
An update for the week: Blayne had physical therapy on Wednesday and they were so happy with how he is doing. They said he has improved a lot since the last visit. On Thursday he got his RSV shots for the month. He did really well like he always does and was very patient for the 2-hour wait. I couldn't ask for a better baby. Friday we got his pictures taken professionally for his one-year birthday!! They turned out so cute and I will put them on here when I get them back on the 27th. Something new Blayne learned to do today is wave!! It is so cute. We have been working with him and he can say hi and sometimes bye and we wave at him. Today he was sitting in his boppy away from me a little bit and my mom and I were waving at him and he started waving. We lent the camera to my sister for the weekend and won't get it back until the middle of the week so there won't be any new pictures or clips...I don't know what I am going to do!! Anyway, we have more appointments next week so I will let you know how they go.
January 21st 2005
Here is the update for the week. Blayne went to see his neurologist in Wichita on Tuesday. For those of you who don't know a neurologist diagnoses and treats nervous system disorders, including diseases of the brain, spinal cord, nerves, and muscles. They perform neurological examinations of the nerves of the head and neck; muscle strength and movement; balance, ambulation, and reflexes; and sensation, memory, speech, language, and other cognitive abilities. We got some great news, Blayne is still not showing signs of Cerebral palsy! She said that he does have a developmental delay. He is behind in his motor skills, which we knew but she is hopeful that he will catch up. She said he is performing around 6 months of age on his motor skills and 10 months on his social and language skills. He is 9 months adjusted so he is actually ahead on his social skills! I was so excited and it was such great news. We still can’t rule out the possibility of cerebral palsy, they could still diagnose it later but it is a great sign that if he does have it, it won’t be a severe.
After his appointment I met two great friends of mine. They also had preemies at Wesley but at separate times. We have been emailing each other and it was so nice to finally meet in person. It has been wonderful to talk to other moms who know what you are going through. Jacob was born at 24 weeks and Allison was born at 24 weeks also. They are truly miracles babies, just like Blayne.
Not too much else is going on. Blayne has Therapy next week. It is kind of nice not to have a lot to write about!! I added new pictures and will be adding video clips and the next few days. I will also be cleaning up some of the pictures. There are just way too many on there!!

December summary

2004-12-01T14:51:00.000-06:00

December 5th 2004
I can't believe how fast time is going. It is already December!! The other day I was writing a check and looked at the date and thought, 'that can't be right'. Blayne had a checkup on Wednesday and they said he was doing great. He is 17lbs 11oz and 28 inches long. He is really starting to babble and makes tons of sounds. He had learned how to growl, that is his newest thing!! It is pretty cute. I think he is around too many animals at our house lol. He also really wants to sit up. He isn't strong enough to do it yet but he wants you to hold him in the sitting position all the time. It is getting hard to entertain him, he just wants to be able to do stuff but he can't. He is starting to roll to get to toys but he really has to want it before he will do it. He is doing so great. We ordered him some new glasses that look more comfortable so maybe he will wear these more. His surgery is coming up fast. Please keep this in your prayers. I will be adding more video clips and pictures in the next few days so you can see the little fella!
December 14th 2004
Blayne's surgery was yesterday. It went very well. It was a very long day though. I had a hard time sleeping the night before because I was worried about the surgery. This little guy has been through so much. I knew he would do fine but your mind always has this little thing in the back of your head of what could go wrong. It just killed me as Blayne was going to bed he was so happy and had no idea what was coming in the morning.
We had to be at the hospital by 6:00am. We registered and then went to the unit. They got him weighed and dressed in a gown. I thought he was going to get very upset but he did fine. We sat with him for about an hour. They gave him Tylenol with a sedative that made him really relaxed and loopy. He was talking and clicking his tongue. He kept flashing us his belly with his gown. It was really funny and cute. Then they took him in his bed to get him prepped for surgery and we went to the waiting room. I thought he would cry when we left but the medicine made him to where he didn't care. They put him under and then got an IV placed. They had to try like 6 times to get one placed and bruised up his foot. The surgery took about an hour and ten minutes. They cut the muscle and then repositioned it and sewed it back together. That took the longest because the stitches are the size of a hair and they do it with a microscope. He also has some stitches on the outside of the eye. His doctor also dilated his eyes to check his ROP. We got some great news. She said his retinas look completely normal!! The ROP corrected itself and she would have never known there was a problem.
They got him back into his recovery room and gave him to me. He was upset but not as bad as I thought he would be. He was fussy at first and would open his eyes. I got him all cuddled up and turned off the light and he settled down a little bit. We tried to feed him because he hadn’t had anything to eat since 10:00 the night before. He didn’t want to eat at first and got mad but finally he did. I turned on his lullaby music and he stopped fussing and ate and went to sleep. He loves his music. I played it to him when I was pregnant and in the NICU. It really calms him down. When he woke up he was still a little groggy. He looked at me and reached for my face and started clicking his tongue. What a trooper. His eyes were red on the inside part of the white by his nose. That is were they cut it. You can also see his blue stitches on the outside part. At 12:00 they gave us some ointment for his eyes to use 3 times a day and to give him Tylenol when he needed it and we got him dressed and left. When we got home he was fussy. His eyes were still very dilated and sore so the light hurt his eyes. I took him into a dark room. He was fussy for a while and then we took a nap.
By the end of the night he was back to normal and you would have never known he had surgery!! His eyes are red and will stay red for 2 to 4 weeks. Today the right one looks really good and the left is pretty red. He had a check up with his eye doctor today and she said he is doing just great and that he really sailed through this. In 6 weeks that is where the eye placement will be. She fixed the outside and now they are straight but it is up to the brain to adjust. There is a 20-30% chance he will need the surgery again in his life but she said right now he looks great. We are stopping the patching for a while and are just going to try and get his glasses on him more.
I have noticed today he can see a lot better. He is more aware and tracking better and his eyes are straight!! I tried to get some pictures but the flash kind of hurts his eyes. This weekend was a hard weekend for me. Worrying about the upcoming surgery, planning Christmas and his birthday.
Also exactly one year ago today Jaidyn died. She died on December 12th 2003 and I found out the next day when I went into labor and went to the hospital. It was so ironic that on the same day Blayne had his surgery, one year ago exactly I was in the same hospital, one floor up finding out that one of my babies had died and the other one my come VERY early and my not make it. I have been really sad this month thinking about the upcoming anniversary but on the actual day everything was so crazy with the surgery and family here that I didn’t have much time to think about it. I made a special candle for her and lit it on her angel day. I will light it every year on that day. Although it was hard his surgery landed on that day he had a special angel watching over him.

December 16th 2004
Busy, busy, busy! This week has been busy. Monday was the surgery, Tuesday he had an eye check up, Wednesday he had physical therapy and today he had his RSV shots. It gets very tiring and Blayne is worn out. He was so tired tonight he was falling asleep in his high chair eating! He is doing great with his eyes. I have noticed such a big difference. Now when he goes to grab toys he grabs straight for them. Before he had to go really slow and concentrate. Also when you tired to sit him up he would kind of shake like he wasn't steady and he doesn't do that anymore. I am so happy! We are working on getting him to wear his glasses but he gets very mad. He just wants his eyes left alone and I can't blame him. We are busy again next week so I will let you know how things go.

December 23rd 2004
It’s been another busy week. I am taking a break to update everyone. Monday we took Blayne to the eye doctor to check his eyes. She said he is doing great and she is amazed how much he has changed and how well he is doing. We are still working on the glasses thing. He just won't wear them. His eyes are healing great from his surgery and they aren't so red anymore. Most of his stitches have fallen out so they aren’t so itchy which is great.
Tuesday we took him to Wichita to get a CT scan to make sure his shunt is still working properly. They will do one every 6 months until he is old enough to tell us that he is not feeling right if his shunt does malfunction. We had to leave our house at 6:30 am to be there by 8:00. That is very early for our house because Blayne isn’t a sleeper! After we got his CT done we went to his appointment. Dr. Grundmeyer could not believe how much he has grown and how well he is doing. He said that his ventricles are still very large but if he is clinically healthy that we shouldn’t worry and that he is acting normal. He said that sometimes the ventricles stay enlarged from the hydrocephalus. It is like when you blow up a balloon and then let the air out; the balloon is stretched and bigger. He said that his fontanel is soft and his sutures aren’t far apart so he thinks he is doing just fine. We were hoping to stop by the NICU to see everyone and show them how well he is doing but we just didn’t make it up there but hopefully in the next few weeks we will go up there.
The rest of the week has been busy getting ready for Christmas. I can’t believe it is already here!! Next is Blayne’s birthday not far behind so we have had a lot of planning to do. Blayne had outgrown his infant car seat! I never thought we would see the day. He has moved up to the next size and his head control is getting so good that he doesn’t need the infant neck support anymore.
Getting his eyes fixed has helped so much; it is like he is a new baby. He has started to talk and make more noises. He says Mom Ma really load a clear. He also says Ba Ba when he is hungry or when he sees his bottle. He wants to get into everything now and touch everything and play with everything. He is starting to cry when you take things away which he has never done. He has become a little sassy pants and has a temper now. When he wants something he can’t have and you take it he lets you know about it. Getting his eyes fixed has helped his balance too. His back muscles are still weak but getting SO much better. He has great head control now and if we get the back strengthened he will be set. For the first time today I was holding him sitting up to play because he isn’t strong enough to do it alone and I let go and he sat by himself for a few seconds!! He then toppled over but I was so excited! I am sure you have seen babies do that so you know what I mean.
He has also learned how to play patti-cake. He can’t clap his hands together but he hits ours. Whenever you say patti-cake he does it. It is so cute. I will get it on video so you can see it. He also wants to feed himself his baby food but he makes a mess. He wants to eat our food so bad but he isn’t ready. He doesn’t do well with texture. The other day I mashed up a real banana to give to him and he gagged on it. He still doesn’t have teeth or any signs of them but they will come eventually. Also, for the first time the other day he held his bottle and fed himself. I just can’t believe how much the eye surgery has helped him, in all areas of development. He is just doing great.

Christmas 2004
We had a very nice Christmas. Blayne had so much fun. We had just a small family get together and no one was sick! I was so worried we would have to call it off because of sickness. We dressed Blayne up in his Christmas outfit and he looked so grown up. He had fun opening gifts but was more interested in the paper and bows then the actual gifts! Isn’t that the way it always goes? J He got a lot of new toys and he loves to play with them. It was a little overwhelming so Blayne and I took a nap while everyone else ate. It is crazy to think back to last year. I was hospitalized on Christmas Eve and almost had the babies. I really don't even remember last Christmas because I was in so much pain and sad, it was all just a blur. It was so nice to have Blayne sitting on my lap opening gifts this year. I never thought we would get there!

November summary

2004-11-01T14:47:00.000-06:00

November 1st 2004
For Halloween we just hung out at home. It was just like another day. We only had 3 trick or treaters come to our house this year. Next year though, Blayne is going to go out on the town!
He had a check-up with his pediatrician today. He said he would like him to be gaining a little more weight. His corn allergy is the reason he hasn't gained much weight this month. We are just down to the first stage baby foods that don't have cornstarch in them and some of the second stage but you have to go through and read all of the labels! He also suggested that we make our own baby food in the blender. I think he will really like that, it will have more flavor. He was also supposed to get his second flu shot today but they didn't have enough. It is so upsetting. I know that there are a lot of high risk patients and not enough vaccines for everyone but I think Blayne is VERY high risk. He wrote an order so our family doctor would give him one. We called their office when we left but they said that they wouldn't give Blayne one because he isn't a patient there. My grandmother in Nebraska called to see if they had any where we got ours and they didn't but they said Clay Center here in Kansas has some. We called and they are going to give him one!! It will be a long drive but I think it is worth it. We have an appointment tomorrow at 9:30 am. His pediatrician said that he is doing great with his social skills but we need to work on his muscle tone which we have been. He said his legs are strong but his upper trunk and arms need some strengthening. He thinks he is doing a lot better with his head! He said that some of his circumcision is growing back and we need to be pulling it back but it hurts him. He started screaming!! Poor little guy. He weighed 16 lbs 6 oz today. We haven't got his height for awhile but I will get out the measuring tape tomorrow and let you all know how tall he is. Blayne has learned how to fake cough. It is really cute. He has done it for quite awhile now but just lately he has really been doing it to get attention. I will have to get in on video so you can all see it. He coughs and tries not to smile as he does it. He knows it gets him attention but I don't think he is starving for it, silly boy! He has eczema which is really dry skin and it is getting worse as it gets colder. When he gets corn it gets really red too. Tonight as we were putting his pjs on I noticed he had a rash all over his body! Pretty bad on his head. I think the cat was lying in his playpen today though when we were gone and Blayne took a nap in it. The animals give him hives if he touches them. I guess that is all the news for now! It is kind of nice not having anything to report on for awhile!
November 2nd 2004
We got his second flu shot. I am so happy that we got it, it is a huge relief. It was a long day but worth. Blayne cried really hard after the short today. I don't think the nurse did a very good job of giving it or put it in the wrong spot because he screamed and he never cries that hard. He still has his rash from yesterday and it was pretty bad this morning around his neck. I am not sure what had caused it. Poor guy, I think it itches him bad! After we got his shot we drove another 40 miles to spend the day with my sister. It was nice to see her and she loves to cuddle Blayne. I woke up with a cold today so I haven't been able to be around him much and it makes it hard. I miss holding him a cuddling him. My cold isn't very bad, just a head cold but any cold makes you miserable. A little cold like this, although it isn't good for Blayne, if he does end up getting it, it won't hurt him. The chest colds are the ones we need to worry about. Please pray that I get over my it soon and Blayne doesn't get it. Today was kind of a hard day for me, I missed Jaidyn and thought about her a lot. Although it had been almost a year it still feels like yesterday to me. I will end with that, I guess I am off to bed now with all of my thoughts and hopefully sweet dreams.

November 10th 2004
Blayne had an eye appointment today to check to see if his eyes are getting better or worse. I was really afraid of what she was going to say because I have noticed his eyes turning in a lot more. Surprisingly she was very happy with how he is doing! She said he is using his right eye a lot more. At his last appointment she was very worried about it because he wasn't using that eye very much. The patching we have been doing has helped strengthen it. With his eyes though the vision fades in and out. Sometimes he sees with his right eye and the left one turns in and other times he see with his left eye and the right one turns in. Since he has strabismus’s that are crossed/lazy eyes when they cross he sees double. The brain doesn't like this so it shuts of the vision in one eye. If you don't treat it he will eventually lose the sight in either one or both eyes. I think I explained all of that earlier. She was happy with his progress but she said she would like to do surgery to straighten the eyes. The muscles are weak and that is why his eyes turn. Doing surgery repositions the muscles so they are straight and can help him see one image instead of double. We knew he would need this surgery eventually but it is scary. Like any surgeries there are risks and he will more then likely need multiple procedures to get them straight. She said the sooner we do the surgery the better but we don’t need to rush. She would like to do it sometime next month and if we can’t do it then we will wait until RSV season is over since he will have to go to the hospital to have it done. It will be done as outpatient and he will be in his own room and not around any other people so the there won’t be a big chance of him chancing anything. They will have to put him under general anesthetic and on the ventilator during the surgery but he was under general anesthetic for his shunt surgeries and did fine. The only thing that we need to watch with him is his respitory because of his prematurity so it might take him longer to get off of the ventilator. They will watch him for 4 to 5 hours after to makes sure he doesn’t have a reaction and if he is doing well he will be sent home or if they think he needs to, they may keep him for one night. His doctor said she does it a lot and it is very routine. I know he will be fine but any surgery is scary. She was going to call his pediatrician and talk to him and let us know when we should schedule it. I will let you all know when I find out more details.
Blayne was pretty good for the appointment which is surprising because he HATES doctors but she MADE him wear his glasses and he got really mad and started crying really big tears and eventually she had him screaming. I mean he wasn’t just crying, he was screaming at the top of his lungs. I have never seen him cry that hard. She said we just need to keep working on getting him to wear them. It is really hard though because he hates them so much.
Some good news! Blayne never got my cold! I am amazed he didn’t get it. No one else got it in the family either. I guess the hand washing really does help. Thank you for the prayers on it. Blayne has started to do some new things. For the first time the other day I stood him up and he put weight on his legs. He has never done that. He usually just has his legs pulled up. I have been working with him and he finally did it. I got some pictures of it so you will have to look at the photo album. It will be awhile before he can stand on his own though because his top half of his body is still pretty floppy and weak but he is getting better head control. He has learned how to click his tongue. It is so cute. We have been showing him how to do this for quite a few months now and he always tried so hard to do it. The other day he finally figured it out and he does it all the time now! He also has learned how to make a different cooing sound. It is hard to explain but I hope to get it on video clip. He thinks these two things are so neat he has been doing them all the time and hasn’t been babbling much lately. It has been hard to get pictures and video clips of him because he wants to feel everything!! So when you get the camera out he tries to grab it. Another new thing he loves to do is get the magnets off of the refrigerator. You can’t walk with him and not have him flying back to try to grab something. It is good he is more aware of his surroundings but it is hard to entertain him. I can only imagine how he would be if he was crawling! Today he rolled over quite a few times. I know about a month ago I told you all he rolled over for the first time well he hadn’t done it since. Today he was playing on the floor and he figured out how to roll from his tummy to his back. He did it about 10 times and then once from his back to his tummy!! I got it on video so you can all see it. Please pray for his eyes and his upcoming surgery. I will keep you all posted.
November 12th 2004
It is crazy when I think back to where I was a year ago. My life was forever changed on this day. Exactly one year ago today I found out I was having twins. I can still remember everything about that day as if it were yesterday. I can remember what I was wearing and everything I did. I was changed forever when I found out there where two little heartbeats inside of me instead of one. So many emotions. I was scared, happy, excited, sad, confused. It was a very bittersweet day. I remember when the lady first told me I thought it was a joke. Then I looked up and saw both babies. I started crying and I remember thinking, I don’t want two. I can’t handle two. I am a single young mother. I guess that would be the reaction of anyone in my situation but when I think back now I would have loved to have both of them. That same day I found out that what Jaidyn had was 100% fatal. I was very confused and afraid I was going to lose both of them. It was really hard going shopping, I wanted to buy for both of them but I could only buy for Blayne. I didn't want to believe the doctors when they said Jaidyn would die. I hoped and prayed for a miracle. I felt special to be having two babies. Sometimes they would both move at the exact same time, it was really neat. I think of Jaidyn everyday and I know she is here with me and Blayne. I am still a mother of twins just not how I want to be.
November 15th 2004
Physical therapy was today. He had gotten to where he absolutely hates strangers especially doctors/nurses. Today his physical therapists walked in and he was all happy and then he looked at them and stuck his little lip out and did his hurt cry like someone pinched him. It is so sad. He then started screaming. They tried to work with him but he wouldn't have any part of it. The little they saw him do though they were very impressed. They said all of his skills are getting much better. He is getting really good head control and now we just need to work on his back muscles. This week is a busy week. I will keep you all updated!
November 17th 2004
We had to take Blayne to the pediatrician today to pull back his foreskin again. It keeps trying to grow back. The poor guy screamed but I guess it is better then getting circumcised again. He was 17lbs 2 oz and 27 1/2 inches long. Take a measuring tape and look at 14 1/2 inches and than 27 1/2. It is amazing how much he has grown! He also had physical therapy again today. He usually doesn'thave it twice a week but we had to some schedule changes. He has three physical therapists that he sees. One comes once a week and the other two come once a month. One works on his top half and the other works on his bottom half and the other one just does a combination of the things they work on. This PT only sees him once a month but she couldn't come last month. She said in two months she has noticed a huge difference in how he is doing. We just need to work on strengthening his back muscles so he can start to sit up. She is very happy that he is skipping things on his development. For example, holding up the head but then skipping sitting up and just going to crawling. They don't like to see gaps and Blayne hasn't done that. He is way behind but that is ok he will get there. She said that he is doing great with his hands and it is encouraging that he isn't very stiff which is a sign on Cerebral Palsy. There can also be too low of muscle tone Cerebral Palsy and Blayne is very floppy but it is probably from his prematurely, his birth problems and how sick he was. She said that low muscle tone is easier to work with then high muscle tone. You can strengthen the low muscle tone but it is hard to get the high muscle tone to relax. It is so hard. I just wish somedays that Blayne could be a 'normal' baby. A full-term healthy baby just does all of the developmental things. One day they start holding up their head the next they roll over. With Blayne you have to work with him and work with him and try to teach him. Don't get me wrong I would do anything to help him but it is so hard sometimes. It is like we are walking along the beach in the sand and Blayne is walking through the water. It is much harder for him. He will get it eventually but it is just going to take patience and time. I wish all the time that I could just jump in and pull him out of the water. Through everything I have been through I have defiantly learned not to take things for granted. You always think that 'It won't happen to me' that it is just something you here about. Until you actually experience it you truly do not understand how hard something is. So many people take childbirth for granted. They don't take care of their bodies when they are pregnant and have normal, healthy full term babies while others take very good care of their body and everything goes wrong. Some people can't have children and try and try and desperately want them but can't but others have tons of children with no problem and abuse and neglect them. It just doesn't seem right. Childbirth really is a miracle. The very fact that I got pregnant in itself was a miracle. The odds of me conceiving fraternal twins were 1 out of 1000 and the fact that I was on birth control was even lower. It is just amazing. The fact that Blayne lived through his prematurely and birth and everything he went through is truly a miracle. I have witnessed many before my eyes and I thank God everyday.
November 19th 2004

Blayne got his RSV shots yesterday. It took 2 hours! They do the amount he gets based on weight. He had to get two shots this time, poor guy. That means he is getting bigger though. He cried but not for very long. He is such a tough little guy. He wasn’t afraid of the nurse this time, which amazed me because he usually takes one look at a nurse, doctor or stranger and screams. We are still waiting to hear back about his eye surgery. I am going to call on Monday to see what the deal is because his pediatrician is bad about remembering things and his eye doctor is always very busy! I will let you know what I find out.

November 25th 2004
Happy Thanksgiving! I hope you all had a great day. We had a little family get together. It was nice no one had colds so they could all come. Aunt Charlene, Uncle Derek, Auntie Reanne, her boyfriend Jeff and Great grandma Iris came. It was too bad our other family members couldn't come this year but hopefully we can see them all again soon. Blayne was a good boy with everything going on. He got to have turkey and mashed potatoes but he wasn't to sure about it. His muscle tone is getting so much better. I can now lift him up over my head and he giggles! Before he was too floppy to even try. I put pictures in the photo album to show you. He also rolled over 4 times in a row to reach a cookbook on the floor the other day! He is babbling a lot now too. We found out he is having surgery on December 13th at 7:30am. We wanted to do it next Monday but the doctor has to be out of town right after the surgery for a week and she wants to be around in case he has any problems. Please keep this date in your thoughts and say a little prayer that day. I will keep you informed, as it gets closer.

October summary

2004-10-01T14:42:00.000-05:00

October 1st 2004

Blayne had an appointment with his pediatrician today. He said he is doing really well! He weighs 15lbs 9oz and is 26 ½ inches long. For his adjusted age of 6 months he is finally on the scale for his growth. He is 45% for his height and ideally they like them to be around 50% he is 25% for his weight, so he is catching up! He said as far as development we need to work on his muscle strength but he is right on track for developing. It is great he is trying to roll over and grabbing toys and cooing. He was very pleased. He doesn’t have to go back now for another month! He had been going every week for quite a while. He got a flu shot today and was NOT happy about it. He will be getting another one in a month and also the RSV shots. It is so scary with all of the sickness out, he can’t get sick! Another thing, Blayne can have all of the fruits, vegetables and we can start him on meats!!
October 3rd 2004
Great news!! Blayne rolled over today! I was playing with him on my bed and was showing him how to do it and then let him try and he did it! He rolled from his back to his tummy and lifted his head way up, he never does that, and then he smiled and rolled back onto his back. I was so happy. Hopefully he remembers how to do it now! We tried it again tonight and he was laughing, it was really cute. Today he had apples with mixed cherries for breakfast and bananas mixed with apples and pears and he loved it! He ate 4 oz of baby food. He says ummmm with every bite. Tonight for dinner he tried peas for the first time and he like those too. Then we tried chicken in gravy and he didn't care for that. With every bit he would make a little gross face!! He is such a doll.

October 8th 2004
Today was such a fun day! Blayne, mom and I met some old friends from the Ronald McDonald House. We went to the zoo and we had so much fun. The babies just kind of chilled in their strollers but it was nice to catch up and see everyone. Sara was a 24-week baby at 1lb 1oz and Eliana was a 30-week baby born the same day as Blayne at 2lb 12oz! They are such miracles. We were blessed to meet them and have them as support in our rough journey. Please keep them in your thoughts and prayers as well. Check out the pictures in the photo album of our day! Blayne started babbling yesterday!! It is the cutest thing. He says ba ba ba ba ba and looks so serious. What a cutie!

October 10th 2004
Grandpa Ferguson got to see Blayne for the first time. I wasn't sure how it was going to go because Blayne has the stranger anxiety thing right now. He usually cries when someone he hasn't seen before or a lot. He loved grandpa though and went right to him. It was so nice to see him and we had a very nice weekend.

October 12th 2004
What a sad day. We got some bad news that a family friend lost her baby to SIDS this afternoon. Harley was 3 1/2 months old. Please keep her family in your thoughts and prayers.

October 14th 2 004
Today was a long day! There has been a huge flu shot shortage and I am sure you are all aware of it. We have been frantically trying to find somewhere to get one. Salina was supposed to have a big clinic today but we called and told them why we needed one so bad and they said we wouldn't qualify since we ourselves didn't have an actual heath problem. Well, we ended up driving to Red Cloud Nebraska. My grandmother lives there so we got to see her for the day and get the flu shot!! Thank goodness. It was a very long day and Blayne was a good boy the whole time. He did get a little fussy towards the end of the drive though. It was a total of 6 hours. In other news Blayne has lost some weight. If you remember back from June he had a corn allergy from his formula. Well he has been getting baby food but most of it has cornstarch in it. He hasn't gained weight for a week now and yesterday he lost 2 ounces. It may not seem like a lot but it is when he is so tiny! We have stopped giving him baby food for a while. He has had an upset stomach and tummy aches. Hopefully it gets better soon.

October 21st 2004
Today we had to take Blayne to the hospital to get his RSV shots. RSV is a serious viral infection that is very dangerous for preemies.

Here is some information I found on the Internet about it:
Q: How is RSV transmitted?
RSV is highly contagious. Each year, up to 50% of infants are infected. Transmission occurs by touching an infected person, and then rubbing your own eyes, nose, or mouth. The infection can also be spread through the air, by coughing and sneezing. RSV can survive for 4-7 hours on surfaces such as cribs and countertops. You may tough a surface with it on it and not know and then transmit it to another person.Transmission may be prevented by standard infection control practices, such as hand washing.
RSV season usually starts in November, peaks in January, and ends early in April. In most adults and children, RSV causes cold-like symptoms and most RSV infections go away in a few days.

However, in infants and children born prematurely (35 weeks gestation or less), RSV can cause very serious respiratory tract disease. Children born prematurely often have underdeveloped lungs and many have not received enough antibodies from their mother to help them fight off RSV disease once they have been exposed to it. High-risk children who are infected with RSV disease often need to be hospitalized. Some children will even die from it.
TransmissionOutbreaks of disease caused by RSV occur on a yearly basis, most commonly during the winter months, RSV season usually starts in November, peaks in January, and ends early in April. With the epidemics lasting approximately five months. Since RSV is relatively easy to transfer through casual contact, family members often pass it on to one another. Hospital staffs are also frequent vectors in viral transmission. A simple and effective means of preventing disease spread both at home and in an institutional environment is good hand washing.

Another factor making the spread of RSV almost unavoidable is the period of viral shedding. Viral shedding may occur one to two days before symptoms become apparent and last as long as two weeks after symptom onset. This period is significantly greater and more prolonged for children with defective cellular immunity. The incubation period is three to five days for most patients.

Again, the added risk posed by this potentially long period of viral shedding can be reduced by early diagnosis and treatment of RSV infection. Since disease can be spread before symptoms even appear and after they disappear, it is important to know the risk factors of RSV infection as well as the timing of the peak RSV infection season in your area. This will help physicians decide to test for RSV and subsequently manage the illness at its early stages.

It was very scary taking Blayne into the hospital. Here we are trying to avoid sickness and we have to take him to the place where there is the most. We had him covered in his stroller and hurried through the halls. First we had to get him registered. Then we had to go up to the Pediatric floor. Although it isn't the same hospital Blayne was at it brought back a lot of bad memories of his long and painful hospital stay. They took us into a room and we weighed him. He gained a little! He is 16lbs 4oz! Blayne absolutely hates any one that looks like a doctor. The nurse went to take his temperature and he took one look at her and started screaming. He remembers his painful stay in the NICU. Poor little guy. Once we got his weight they sent the order to get the shot mixed on how much he weighs. Synagis shots are very expensive. They are $1500-2000 per shot and it only lasts 30 days. So because of this they don't want to waste any and mix case by case. It took 40 minutes to get the shot. Blayne feel asleep waiting and then they came in and woke him up with a shot! He cried until I picked him up, he is such a tough little guy. We had to wait 45 minutes after the shot to see if he had a reaction. He did fine! It was a long day though. The RSV shots won't prevent Blayne from getting it but if he does it shouldn't be as severe. It is so scary though. He has been through so much and he doesn't need to get sick. With precaution, good hand washing and prayer we can do the best we can to keep him safe! Thank you all for the continuing prayers.

In other news, Blayne had started to babble a lot more. He says DA DA DA and DAH DAH DAH, BA BA BA and sometimes MA MA MA. He is such a cutie. I am hoping to get some video clips on here of him doing it and hopefully they work this time! We have started giving him the stage 1 baby food again. Just the plain with nothing mixed. He really missed his baby food and is a happy camper. His tummy seams to be getting better and he is much happier. Physical Therapy came today and they said he is doing great! His muscle tone is getting much better and she said his head control is much better than last week. We are going in the right direction!

September summary

2004-09-01T23:55:00.000-05:00

September 1st 2004
Blayne had a check up with Dr. Rosales and he gets to start baby food!! It is exciting! He said he is doing well and to continue to work on his trunk and neck muscles but he is please with how he is growing and that he is still moving all of his arms and legs. He weighed 13lbs 10oz today!
September 16th 2004
We had a check-up with Dr. Shah Blayne's neurologist today and they said that he is doing great and isn't showing any signs of cerebral palsy, which is such a blessing. It doesn’t mean he won't have it later but is a good sign. He isn't showing any signs of seizures or anything. His muscle tone is just right; he is weak in his neck and trunk and to continue to work on strengthening them, which we are. We have been having a hard time keeping Blayne's glasses on. As soon as we put them on he pulls them off! It is a battle but he will get used to them eventually. He is so happy and has learned to make all kinds of noises!

September 25th 2004

Blayne got his 6th month pictures taken! It was a big ordeal. We got them taken at Sears and I wasn't very happy with them but ordered them anyway. So I got home and got to looking at them and wasn't happy at all. They didn't look professional so I called and talked to the manager she said she would retake them if we came in the next day. So we did and she spend a lot of time which was nice but there was no one else waiting so she had time but said not to expect it next time. They pictures where good but she didn't take the poses I wanted and Blayne didn't like her and wouldn't smile for anything!! So, we ended up going to Wal-mart after and Blayne had so much fun! You can defiantly tell the difference! He loved the guy and was smiling and laughing so hard he was practically rolling off of the table. You can tell the difference when you look at the pictures. We have tons of them now and more then we needed but he is only little once. They are in the gallery and I hope you like them.
September 30th 2004
Blayne had an eye appointment today and she said that his eye sight is the same and it is good it hasn't gotten worse but we need to keep watching him. She said that we really need to get Blayne in his glasses, he WILL NOT wear them. She said that with his eyes being so different she is not sure what he can see when he looks together. He is very near sighted in his right and far sighted in his left so when he looks together we are not sure what it looks like. She also said he has a high chance of losing his sight in his right eye because of his ROP even though it was mild, his astigmatism in that eye and that it is lazy. We are continuing to patch his good eye two hours a day to strengthen it. By wearing his glasses it will help strengthen his sight and keep it from getting worse. We are going to try and put an elastic band on it and see if that helps. The last resort would be putting him in contacts but it would be a lot of work. He has an appointment with the pediatrician tomorrow and I will let you know how that goes!!

August summary

2004-08-01T23:52:00.001-05:00

August 4th 2004
Blayne is getting cereal for the first time today. He wasn't really sure what to think about it but kind of started to like it. He is going to be getting it once a day now.
August 19th 2004
We are starting to take Blayne to the chiropractor to help his neck because he is always stuck on the right side and has a hard time turning his head. After one adjustment he is doing a lot better. He will be going 3 times a week and he is going to reshape his head since it is so pointy. We still have an appointment everyday each week and it is tiring and Blayne is worn out too!
August 25th 2004

Physical therapy is happy with how he is doing. We are still working with his neck muscles and he still can't hold up his head but it is getting better. He can hold it up for a few seconds before it falls forward and he couldn't do that before!
August 27th 2004
We had an appointment with Dr. Lawerence the eye doctor today and she said he needs glasses. It am so upset but I am just glad he has sight and that is all that matters. She said he has a lazy eye in his right eye and that he is losing the sight in it. When his eye crosses in the brain sees double and it doesn't like that so it stops the vision coming to the brain so it only sees one image. We are going to have to patch his good eye once a day for 2 hours at a time to force the bad eye to work. This will help strengthen his vision in this eye so it works and he doesn't lose it completely.

August 30th 2004

Blayne got his glasses today and I showed him a toy and he reached and grabbed it with both hands. It was such a special moment because he has never done that and I just started bawling. I guess it is just upsetting because I wish so badly that Blayne could be a 'normal' baby. I worry everyday about how the future is going to be. I just wish he didn't have all these doctors’ appointments and could just develop and grow like a 'normal' baby. It is just hard.

July summary

2004-07-01T23:51:00.000-05:00

July 2nd 2004

Physical Therapy said he is doing ok but we need to work on his neck muscles more. They are very weak and just to work on them.
July 7th 2004

We got a letter last week that said Blayne failed his hearing test in the hospital and we need to get it rechecked. I am just devastated. I can handle if he cannot see or cannot hear, but not both.
July 9th 2004

The hearing test was today and he passed it with flying colors! I am so relieved. Blayne is started to smile a lot and he has even laughed a few times. He is such a joy and I am so blessed to have him and he is truly a miracle baby.
July 19th 2004

Physical therapy is very pleased with how is doing and said he is using his hands a lot more and they are pleased with that. He neck muscles are still weak and Dr. Rosales said to work on that too. We have been and it will come with time.

weight issues

2004-06-27T23:50:00.000-05:00

I am still pumping for Blayne but I don't have enough for what he eats. We have been trying to find a formula for him but the first one didn't agree with him and the Dr. though he was lactose intolerant so we switched to another formula. He has been on it for a week and a half now but he has started to forcefully spit up every time he eats. They think he is allergic to corn, which is in all of the formulas we have tried! What a mess. He hasn't been gaining weight because of any of this, he is only 10lbs 1oz and should have gained a lot more by now. We are putting him on a formula without corn so hopefully starts gaining weight and this one agrees with him.

pictures

2004-06-17T23:49:00.001-05:00

We got Blayne's pictures taken today! He is 10lbs and 24 inches long! He wasn't very happy for the pictures and didn't know what to think about all of it and wouldn’t smile. He is very happy at home though! There are more of his pictures in the photo album.

Eye specialist

2004-06-11T23:49:00.000-05:00

We went to see a specialist on Blayne's eyes and he said he is ok. His ROP is very mild and won't get worse. I am thankful it isn't bad but it is upsetting he has to go through something else.

eye doctor

2004-06-09T23:48:00.000-05:00

We had a check-up with the eye doctor Dr. Lawerence today and she said he has some ROP. He didn't have any in the hospital and they said he would be ok but he has developed it. She said it is rare that is happens this late but he only has stage 1 and it shouldn't get any worse. She said that with his brain damage that even though his eyes can see that when the image goes to the brain he might not be able to process it. She is not sure what he can see and won't know until later. He will probably be in glasses early.

another check up

2004-06-05T23:48:00.000-05:00

We had a check-up at the pediatrician today and Blayne is 9lbs 6oz. Dr. Rosales would like him to gain more but says he is doing ok.

more appointments

2004-06-01T23:47:00.000-05:00

We had a check-up with Dr. Grundmeyer today. He said he is doing well. We had a CT scan done, this is his 5th one, on his head and his shunt looks good. His 4th ventricle is enlarged but they said they usually just leave it alone and it doesn't cause problems but we will continue to follow up on it.

pediatrician

2004-05-20T23:46:00.000-05:00

We have been seeing Dr. Rosales, his pediatrician once a week to make sure Blayne is growing as he is supposed to. He has so many appointments it seems like we are always going somewhere! He is doing well and weighs 9lbs 3oz.

appointments

2004-05-17T23:46:00.000-05:00

Blayne had an appointment with Dr. Shah the neurologist today and he was able to get off of his Phenobarbital! He had an EEG done and didn't show any seizure activity which is wonderful. He wants to see him back in 6 months to see how he is doing.

therapy starting

2004-05-10T23:45:00.000-05:00

Blayne is starting to get physical therapy at our house once a week. They are just working with him on his weaknesses and watching him. They said he looks pretty good for everything he has been through.

Update on being home

2004-04-30T23:44:00.001-05:00

Blayne is l month adjusted today! They adjust the date by when he was actually supposed to be born. Since he is 4 months old but only functioning at a 1 month level that is why. Confusing I know. Anyway, he had an appointment with Dr. Grundmeyer to get his stitches removed and he said he is healing very nicely. He is doing well and loves being home. We are trying to work on breastfeeding but he gets frustrated. I am still pumping breast milk for him and he is getting it through the bottle. We went to his pediatrician for the first time this week and his doctor said he is doing well!

First day home

2004-04-18T23:43:00.000-05:00

It is really weird to be home. Blayne is finally not attached to any monitors and I can do whatever I want whenever I want to!! In the hospital I would have to ask to hold him and now I can hold him all the time. No more heel sticks or IVs, ventilators, oxygen or feeding tubes. We are home and he can be a normal baby!

Finally going home!

2004-04-17T23:40:00.001-05:00

We are finally going home!! It has been along road and I never thought we would get here but it has finally come. No more hospital!! It feels really weird to be able to leave with him. Are you ready for the final count though 109 LONG days. He made it though!!

Surgery agian

2004-04-13T23:39:00.000-05:00

10:00 am: They are going to put Blayne's shunt back in today. His cultures have been negative for 10 days straight so the infection is gone.
1:45 pm: Blayne had his surgery and it went fine. They shaved the other side of his head so he has a little Mohawk now! :( He is back on the ventilator and sleeping in the PICU.
7:00pm: He is off of the ventilator already and eating

Good day!

2004-04-01T23:38:00.000-06:00

I got there and Blayne doesn't have a feeding tube anymore! He has been bottle-feeding all of his feedings and now he can eat when he wants instead of having to eat every 3 hours. One step closer to going home!

moving to the PICU

2004-03-30T23:11:00.001-06:00

They decided to move to the PICU. The external shunt that is placed has to be very carefully taken care of. The NICU nurses don't deal a lot with them so they moved us. I have gotten attached to everyone in the NICUand didn't want to but we have to do what is best for Blayne. Weare getting used to the PICU. It was really hard at first because we have been so used to the way the NICU does things. It is a lot different but the people are very nice. Blayne is off the ventilator and bottling feeding again. He is doing well with it and I think he is finally catching on. One thing that is nice about the PICU is it is a lot more relaxed. We have our own little room so Blayne isn’t by the sick kids and it has a TV and a recliner. We can have food and drinks and can be there as much as we want! One nurse said that the NICU gets babies to survive but they get them to thrive. It is very true. I am able to interact with him more and I feel like I am more in charge of his care. It is hard now that we can be there and there aren’t set visiting hours, I never want to leave!

Worst day yet

2004-03-29T23:09:00.000-06:00

Today was my due due date.

I have to say this has been the hardest day. Everything we have gone through has been hard but this is by far the hardest, let me tell you why

10:00 am: Dr. Dorn called this morning and said that Blayne has staph infection in his shunt and he needs emergancy surgery to take it out. He has been through so much and it is so heartbreaking to see him go through this too.
12:00pm: They took Blayne for surgery and it went well. He is back on the ventilator and he has an external shunt palced. It is a tube that goes into the ventricle and comes out and drains into a bag. They have to wait for the infection to clear before putting a new shunt in which could be another 2 months. It is hard to think we could be here that much longer. I think I am going to lose it. We can't be here for another 2 months.

eating update

2004-03-27T23:08:00.000-06:00

We have been working on the bottle-feeding and he is still not catching on although he is doing a little better. He has to take all of his feedings by mouth and gain weight before we can go home and he can't even take one full feeding by mouth. It is so frustrating. Today was a really bad day. I was feeding him and noticed that his incision site is all red and swollen and red down his tubing. I showed the doctor and he said that they are going to test the fluid and see if he has an infection. He is really whiny and doesn't act like he feels good. I just have this gut feeling something it wrong.

Frustrations and eating

2004-03-16T23:07:00.000-06:00

I am so frustrated!! Now that Blayne has his shunt the only thing keeping us from going home is he has to learn to eat by mouth. I have been pumping every 3 hours, sometimes 2 since was born. It is a lot of work and I have been trying to breastfeed him at least once a day but he just can't do it. I know he is still recovering from surgery and I am trying to be patient but I just don’t know if he will ever get it! I have finally just given in and started bottles so we can go home and will work on the breastfeeding once we get home. I just want to leave with him so badly.

surgery day

2004-03-13T23:06:00.000-06:00

Morning : I went in to see him before surgery. I am so nervous!! It was the first time I had seen him without anything on his face! He is hungry because they haven't feed him for a while for preparation of the surgery and he was asleep and kept sucking on nothing, it was really cute.
Afternoon: The surgery lasted an hour and a half. He was back on the ventilator and had a lot of his hair shaved. He is on morphine for pain and is knocked out and sleeping. He has gained 300 grams of water from the surgery and medicine and he is really puffy. He did great though.

Time for surgery

2004-03-12T23:04:00.000-06:00

Dr. Dorn(his neonatalogist) Dr. Shaw(neurologist)and Dr. Grundmeyer(neurosurgeon)all got together and they have just decided to put the shunt in. Blayne has had so many taps and they go through brain tissue every time. The risks of keep tapping outweigh putting the shunt in. The surgery is scheduled for 7:30am tomorrow morning. I'm so nervous

First Bath!

2004-03-02T23:03:00.000-06:00

I walked in and they were giving Blayne is first bath! He looked so cute and was in a little pink tub. I guess he liked all of it except getting his ears washed! Its about time he got his first bath, he was starting to get stinky! I was a little disappointed I missed most of it but I caught the end of it.

finally a good day!

2004-02-18T23:01:00.000-06:00

Today was a good day! I am so excited! I think it is time for a good day. I walked in and Blayne was in clothes and wrapped in a blanket! He is up to full feeds and they stopped his IVs and Dr. Dorn ordered to take his central line out!

more bad news

2004-02-16T23:00:00.000-06:00

Today was another bad day. It seems like we just get through one thing and another hits. I got there and Dr. Dorn came and said his head circumference is up and that they did a head ultrasound and his ventricles are enlarged again. He is going to need taps twice a week until his protein is low enough to put a VP shunt in. This will continually drain the extra fluid that his body should be doing. The normal range from the protein in the fluid is 15 to 45 and Blaynes was 949! It is because of his brain bleed that has caused all the protein but if they put a shunt in now it will get clogged. Dr. Dorn also said that there was PVL on his ultrasound, which is brain damage. This is just one more thing to add to his chances of having a disability. Dr. Dorn said, it just confirms he will have a disability, we just don’t know what. Please continue to pray for him.

Another bad day

2004-02-03T22:59:00.000-06:00

Today was a bad day. We got there and his nurse was really concerned because his tummy went from 24 to 26 cm in 2 hours. He had a lot of green drainage from his stomach because of his NEC. They did x-rays and said he would more than likely need surgery. The surgeon came and looked at him and said he doesn't need surgery now but will know in a few days it will either get better or worse.

another problem

2004-01-28T22:57:00.000-06:00

They did another head ultrasound today and Blayne has hydrocephalus which is excess fluid in the brain. They are going to have to start doing taps where they put a needle through Blayne's soft spot and pull of fluid. If they don't do anything all of the fluid will build up and put pressure on the brain and cause damage or death. I am too overwhelmed to think about everything right now.

Another set back

2004-01-26T22:50:00.002-06:00

I haven't wrote in awhile. Blayne finally got over the seizures and started improving with his oxygen. He didn't have menigitis and they never figured out the cause. It was more than likely from the brain bleed though. So on to today:
We got there to see Blayne and the nurse said he has blood in his diaper! That is really bad because it is a sign of NEC. Necrotizing Enterocolitis is an infection of the intestines that causes inflammation, interior abdominal damage, and tissue death. This could kill him. So they stopped his feedings and took an x-ray. They put him back on the ventilator and are doing x-rays every 6 hours to watch his bowels to make sure they don't perforate.

finally stopped

2004-01-12T22:48:00.001-06:00

Dr. Dorn called very early this morning to the Ronald McDonald House and said that he finally got his seizures stopped at 3:00 am last night. Blayne had seizures for 17 hours straight! This is terrible. Most seizures last for the most a few mintures. He said that Blayne is on the maximum dosage of anti-seizure medication he can be on and that he is also on morphine for pain. He said these were the worst long lasting seizures he has ever seen and he is scared to death of the brain damage it has caused him and he is not sure he will make it through the day. If his seizures come back they are going to discontinue treatment and let me hold him as long as I can. I am scared to death and I can't lose him. Please Please pray.

more seizures

2004-01-11T22:45:00.002-06:00

The Phenobarbital isn't working and he is still having seizures. I held him with both hands the whole time for 4 hours. He was shaking so badly in his little isoletle. It was such a sad site to see his doctor had a hard time watching it. He said he didn't know how I could either but I was thinking, 'this is my baby, I wouldn't be anywhere else'. It was such a helpless feeling though. They have given him 4 different medicines to try to stop them and finally at 10:45 they were starting to die down. Visiting hours where over so we head back to the Ronald McDonald House. He is in isolation because he may have menigitis and it is very contagious. At 12:00 am Dr. Dorn called and said the seizures came back and they were giving him more medicine. I feel sick.

seizures

2004-01-11T22:43:00.000-06:00

My mom and I have been staying at the Ronald Mcdonald House which is very nice because we have been able to be close to Blayne and spend everyday at the hospital. We needed to get more clothes so we went home. At 4:45pm Dr. Dorn called our house and said Blayne was having seizures and they were giving him phenobarbital to stop them and doing a spinal tap. They are putting him back on the ventilator and we needed to get back ASAP.

Skin to Skin

2004-01-08T22:42:00.000-06:00

I got to hold Blayne skin to skin for the first time. Skin to skin is where I take off my top and put on a robe and the put Blayne in just his diaper and they lay him on my chest. They have done studies on it and it actually helps the babies grow and develope! It was started in Columbia because they didn't have incubators for premature infants and this kept them warm. Parents would "wear" the babies 24 hours a day. I got to hold Blayne for two hours it was really nice.

A very hard day

2004-01-05T22:37:00.000-06:00

Today was a really hard day. Dr. Dorn told us to sit down and explained to us that Blayne has an intraventricular hemorrhage or IVH for short, which is bleeding in the brain. They rate them on a scale of 1 to 4 and 4 being the worst. Blayne's is a grade 3. He is high risk for complications from it later. He could have mild learning difficulties to severe problems like mental handicap or Cerebal Palsy. We have to see if the brain bleed caused any damage which won't show up until later we just have to wait and see. Please pray for Blayne and his long-term prognosis that it be a good one.

Update on Blayne

2004-01-02T22:35:00.000-06:00

Blayne is on the ventilator(life support)to breathe for him and he has had two blood transfusions. The main problem he is having right now is extremly high bilirubin which causes jaundice. His liver is too immature to break down all of the red blood cells from his bruising. It is at 13.5 right now and they highest they will let it go is 14. If it gets to that point they will do a complete blood transfusion where they take all of his blood out and put new blood in. It is a scary thing to think about. He is on bilirubin lights right now which are blue photo therapy lights that break down the cells. He is amazing and a little fighter. Thank you all for the prayers.