February 2, 2010

Lost his first tooth!!

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.

December 21, 2009

Autism

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 ;)

September 17, 2009

WALKING!!

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.

September 4, 2009

School update

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!

August 14, 2009

Summer ending

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.