Tuesday, November 10, 2009

An update in the midst of Prematurity Awareness

Since Ty is the reason we blog about awareness I think it is about time we had a little update on his upcoming adventures.

We have started Speech Therapy at Shriners hospital. I am so thankful that we were able to get in someplace. He is doing REALLY well. We have also increased the really annoying sounds at home and have gotten him to recognize almost all of his letters. We are getting sound and it is VERY encouraging. The biggest thing that has gotten the MOST smiles is his new word. Dallas sister Sheena is staying with us for a while and Ty and Sheena have this bond. Seriously it is so cute. But we were working on a WORD.. just any word... so we combined a few sounds we all ready have and came up with something that would work for Sheena. So His word for her- SHH A.( the A sound what he says at the end) Super cute. He gets so excited and claps and claps and in the corner Sheena BEAMS. He will say SHHA when she gets home, when he goes to get her for dinner he knocks on the door and says SHHA. Oh and if you every meet him.. ask him about Roary. He says it very cute.

Some things we have noticed with his speech ( though positive that it is improving) He cant' form the sounds and words correctly. They are not sure if it is a muscle issue or a brain issue. We are going to be working with a OT to see if it is a sensory, muscle or what issue. That starts in December. They are also not sure if his brain can't put the words together. They are working around a hole so they don't know what exactly is the full cause. We have had to start over in a lot of things and sounds is one of them. It is encouraging to see him improve though.

At night we also have really stepped up the personal prayers with him. Because we are also doing it not just for the spiritual lessons for him but for hoping to increase his vocabulary ( ok EVERYTHING we do with him is therapy even if for the soul :) ) He is DOING it. He is starting most of the words. It is seriously SO exciting.

The next thing we have really focused on is his next step of dealing with his CP. We were doing botox in Arizona and had a consult in Utah last January. At that point the team felt that Botox was what we should be doing. After moving back here the only place we can really get great CP care is through Shriner's and the rehab docs ( which happen to be the same ones) at PCMC. So we really do feel we are getting some of the best.

The CP team and Dallas and I feel that the next step is to do Phenol injections in his gastric muscles and abductors. Because it is more painful than botox they are going to have to sedate him and put him under for it. So while he is under they are going to do Serial casting for him. So he will have both feet in a casts for as long as we can get him to tolerate it.

We are also seeing a sleep doctor for Ty on Monday. There is so much I hope she can answer for us. We are also seeing the OT for a sensory processing disorder. I don't know enough about it yet to really make a comment.

So that is us right now..

1 comment:

Rich said...

So bummer... on the casts... Make sure mom gets you a little bell, so you can ding it, every time you need something... Or every 15min, which ever comes first...

I hope it all works out! Keep us posted!