We got the suit! It’s only been a week so far and we’re easing into it but oh my days, what a difference. I know that it makes sense, with a supportive suit he should be able to support himself more, and he DOES. Sitting is better, it’s like his whole trunk is supported so he doesn’t have to work as hard, which means he can work on holding his head or swinging his arm or whatever it is he’s trying to do.
The only downside is that it is quite warm – making Kai warmer than usual. Difficult, with the helmet, which also holds all the heat in. We’re taking temperatures like nobodies business to make sure he’s acclimatising okay (and he is, what a champ) but it’s just something we’re aware of when we dress him in the morning. Thinking about layers and all the things. Checking his body for red marks to make sure the compression suit isn’t compressing him in a way that causes pain, or leaves red marks.
It’s weird to think about all these extra things, and what a difference it makes. It also makes me feel like we’re worlds away from the neurotypical path. Hey ho, onwards we go. I’m glad we’ve found something that helps Mikaere, that makes his life a little bit easier.
Hurrah for Superhero suits, hey?