I do believe I can say that Dacotah just said his first sentence ever!!!!!!!!!!!!!!! He climbed into his chair at the table (he has no issues getting into it, but he can't get down without help) after he got his cookies he says "Mommy... (slight pause) down (pause) peas." I have been working diligently with him when we are home in the afternoons together and he's slowly but surely making progress. I really think the communication cards will come into play and will be more beneficial because he will point to them and then echo's back what I say they are. They have a term for that "Echolalia" children his age have usually outgrown the need to echo back but with his delays I'm excited for every word he will repeat back.
We went back to see the endocrinologist this morning to start a treatment that will last three months. I debated on talking about it, but I know some people reading this have kids with KS and can benefit from the information given. There is a study done by a physician in Maryland that shows that infants who received Testosterone therapy have shown improvement in their hypotonia and lack of speech. She contributes the lack of speech to the low muscle tone in the face which prevents the words from coming out. Downside is, we don't know how well he will do because the kids in the studies were under a year old. Because we didn't know about his genetic disorder until he was 2.5 it through everything a bit off. But we are praying and hoping that he can have some positive results and feel after talking with the specialist the benefits of attempting outweighs the small risk because it's a very small baby dose. He will receive one shot a month for three months. He goes back in Jan and Feb to see the nurse, and then in March we will go back to see the endocrinologist and update him on any and all progress he has made over the next three months.
The drive to JC was awful. I could tell this morning that Dacotah was not going to travel well. He screamed and threw a fit when daddy put his clothes on, screamed some more over his shoes, cried all they way to Gate City, cried again in the office, threw his toys, screamed the whole time we were in the office, he honestly cried more being held down than he did from the shot (they use numbing cream, which I was really thankful for). He fussed halfway home and finally fell asleep, which then threw his nap off schedule. It's only 2pm................
We sent the paperwork into the DMV last week, I hope to hear from them soon as to whether they approved the medical clearance to tint the van windows which should help a lot with the sun coming in directly on him. If that doesn't work I'm going to conjure up a sheet that will block the sun out of his face.
We have his compression vest sent into the DME company. It's been nearly a week and I called this morning for an update to be told the orthopedist had been out of the office last week that he will be back in tomorrow. I AM REALLY hoping that he sent it in once they sent him the order to the Roanoke office last week the lady is suppose to call and let us know tomorrow.
Dacotah is doing great with pre-school. He's showing interest in the other kids and said his best friends name the other day when Ms. Monica asked him who the little boy was. I love sneaking in (the best you can with a room full of preschoolers who say "baby, your mommy is here". Most of the time he continues playing until he eventually sees me. The pictures and videos I get throughout the day definitely highlight the improvements he's making and I know we are on the right path with the preschool we have chosen.
We have PT with Pat today and then we get to dress up and go to daddy's Christmas party at work. I'm hoping the down time between now and then will help and Dacotah will be more calm. I'm hesitant to take him into a crowd of people because you see him withdraw when they start talking to him. Maybe..... we will eventually get him a shirt that says My name is Dacotah I am 2 thanks for asking.. lol. In the meantime we will continue taking one step at a time.
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