It's hard to believe it's been a month since the last update, and a month from now he is going to be 3 years old. What's more incredible is seeing the DRASTIC change in his tone and speech in the past 6 weeks. So here's a back date.
To date he has now how to treatments of testosterone injections through the endocrinologist's office. All I can say is WOW WOW WOW WOW, I wish I had known about it two years ago. But.... PT, OT, and us are all astounded that he's talking more, he has more upper body control, and is crossing the midline when he plays. The weak muscle tone in his back and shoulders is drastically improving as well. It is our hope once the third shot is done he will be good to go. Though Dr. Los did say he is not opposed to giving him four doses if he needs it. Kids with KS do not make enough Testosterone and that causes the poor muscle tone, which adversely affects their speech.
This week was the FIRST TIME ever he was able to say Truck. He would try but would end up blowing air out because he couldn't make the word. Now he has no problems. I picked him up from school last week and asked if he wanted to go home or to the bank. Plain as day he says "bank". He is making progress and I am super thankful.
I still get shell shocked when we go out, and there are younger kids talking in full on sentences and he still struggles to put the words together. I realize we have come a long way, but we still have a ways to go. BUT that's not going to stop us. We will get there.
Travis and I made him the appointment to go see Dr. Sprouse in Maryland in June. Despite the expense we feel that it will provide us with a lot of insight in what we need to work with him on, and what we can expect in the long run with him as far as how the genetics will come into play.
We modified the order for his compression vest to a TLSO but we can take out the rigid supports and the insurance will cover it. I'm hoping it will be ready when we go back to the Orthotics guy next week to pick up his SMO braces. He has outgrown his other set. (they are suppose to last 6 months, he barely made it 3).
We had an updated IEP meeting with the school here and he qualifies to for OT as well. So in March he will have Speech, OT, PT, and developmental therapy. They increased his PT to once a week instead of every two. We also applied for him to have a one day a week Head Start visit.
Going out to town with him has gotten sooooooo much easier. Ha we went out to eat one day a few weeks ago and the lady was clearing the tables and scooted a chair, I was waiting for him to freak out. His head shot up and his eyes grew wild as he tried to locate what made the noise. We reaffirmed that he was okay and he was safe, a few minutes later he was calm as though nothing had happened.
Our van DVD players died, so mamaw as able to get him a new one with a bigger screen for an early birthday present. He ABSOLUTELY loves it.
We will update again when in a few weeks.
