I can't really go into the details but its been a really hard day. Crew had a PT appointment today with Shaun. When we first got there, I pointed out that Crew is acting different since we started him on the Topamax. He acts sedated! Big surprise. I hate it. It makes me feel bad and worry. Shaun noticed a big difference right away. Last time we went Crew was running around in his walker, chasing a soccer ball, laughing, smiling, squealing. Today, Crew was only with us part of the time. He would chase after the ball, then stop and slump down in his seat and stare off into space. After 10 seconds or so, he would kinda stand up and go after the ball again. Its hard to explain but he is definately showing signs of those horrible no good side effects.
Since Crew was feeling really calm we decided to work on raising up on his knees from a kneeling position. Shaun placed bowling pins up on a bench. Crew was required to push through his glutes and legs to raise himself up high to reach the pins and knock them down. After working on this for a while he was making amazing progress. Shaun feels like Crew could get this down within the next month as long as we work on it daily.
Also, Shaun measured Crews range of motion in his legs and noted that his left leg has more spasticity than his right. That is very puzzling considering that his right arm has more spasticity than his left. One would think that one side of his body or the other would be more involved, but that doesn't seem to be the case. Shaun said he has never seen anything like that before and "it doesn't make sense". Shaun also said that Crew isn't like any other patient he has had before. Trying to explain himself, he said that usually when he gets a new patient he can compare them to someone else he's worked with in the past. But Crew is different. His situation different... in a good way but unusual. Crew can "Cruise" in his walker but still has not learned how to roll over. (just an example). Shaun felt that Crew is a child that will continually make progress over the years of therapy and that often times he works with kids who make very little progress.
Tonight. ... a huge thing happened at our house. Did I mention HUGE!
It was amazing! We were all so happy. He actually moved himself.... and with no help from me... ZERO, NATTA, NOTHING. He did it all by himself! Those of you who have a child with special needs can understand this huge accomplishment. And for those of you who don't.... well... Crew is 32 months old! We've been waiting for this for a long long time.
We're proud of you Crew!