Anyway, it's great for Casey's body, and psyche. He loves his two therapists, Britny and Jill. Sometimes they have PT students and he gets double the attention! Mostly, the therapists stretch Casey which is sooo much more tolerable than being stretched on dry land. Some of it is the distraction of being in the pool, I'm sure, but the heated pool relaxes his muscles which increases flexibility and he gets a better stretch. I think it just makes him feel good to be weightless in the pool and I'm sure it eases any aches and pains he may be feeling. Plus, he's almost always happy when he's there!
We have also put weights on Casey's ankles and hold him up so it's like he's standing. (his knees are permanently contracted but it's as close as he can get). It's a little weird for him but it must be nice to be in a different kind of position if just for a few minutes. Sometimes I will put his butt on my knee and bounce him like a little baby. I know, I know, but it's fun!
After stretching and 'standing' it's Casey's time to do some work. The therapist will have him wiggle his legs. He can do it a little bit. The other day he was able to click his heels together which he thought was cool. He can wiggle his shoulders and make his arms move. I wish, I wish, that the would be able to wiggle his thumb again. It's been more than two years. I don't know if he can ever get it back but we keep trying. Who knows, as there isn't much data on older kids/adults that are on Spinraza but the trend seems to be that the longer your'e on Spinraza, there's more of a chance that movement can return.
