The Impossible Has Happened!!

We are currently four days seizure free!! I have been so scared to commit that little fact to paper - I don't want to jinx anything after all! It feels a little surreal and almost impossible as Cyrus has not had more than one day in a row seizure free since September! And then there's also always the possibility that he is still seizing - either after we have fallen asleep trying to stay up with him, or that his seizures are just so small that they are not visible, which would still be an immense improvement!

And of course because things can never be totally simple, this blessing has been accompanied by a few new concerns as well. Cyrus has always had these bouts of hyperactivity or strange purposeless movements, usually after he's had a dose of one of his meds (clobazam). His neurologists refer to this movement as chorea or chorieform movements, and is perhaps maybe a result of his damaged basal ganglia. And since Tuesday of this week, this behavior has stopped being episodic and has been totally constant. If the boy is awake he is moving - he is moving his arms, his legs, and his mouth. Here's a couple of videos. The first is from Tuesday and the second is from last night (Friday). Perhaps you can tell me if you think it's staying about the same or getting worse.

This has caused a few problems. First off, he can't stay on his back and keeps rubbing his face all over the floor to the point of giving himself rug burns. I almost feel like we should transition to spending more time in one of his chairs, however the we've managed to break our on-loan wheelchair (it was already damaged so when this happened it was not hugely surprising. The thing is ancient!) so his headrest is not quite in the right position and I don't want him kept in it for longer than he needs to be for physical therapy reasons, and he hates the tumbleform chair - sitting there all day would make him absolutely miserable not to mention angry.

Which brings me to my second point, physical therapy has become rather difficult. His little body is completely out of his control - constantly flailing and it's difficult for him to do any of the exercises from tummy time to rolling down wedges or sitting up in a supported sit. Very frustrating. 

And most importantly, his ability to eat has significantly diminished. He is not sucking on the pouches and even when we spoon feed him, it takes him awhile to find the coordination to swallow. It used to take 20-25 minutes for him to eat about 10 oz of food. Now, it's like 45! And he gives us no signals anymore, it's hard to tell if he's hungry or if he wants more. So we've just been guessing based on how much food he was eating last week and how often he wanted it. There was one point last night where I felt we might have waited slightly too long as he seemed almost frantic when he was offered food, but I'm not really sure, as he has become even more difficult to read. We've not been able to get much expressive emotions from him in general this week, though he is still babbling when we pick him or talk to him or just 'cause. So that's good! 

Anyway, we conveniently have a neurology appointment on Tuesday and hopefully she can assuage my fears of a completely destroyed basal ganglia or at least offer us some options or strategies moving forward! 

In other news, I have just completed the school year and am absolutely looking forward to getting to spend more time with Cyrus and just be a bigger part of his therapy team! And maybe give dad a night or three off. 

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