Maria’s been doing OK since her hospital stay…maybe. I saw her Monday the 7th and she was fine, completely back to her old self. However when I went back Friday the 11th Cathy told me Maria had been sleeping a LOT – like all day and all night – ever since. Cathy called a nurse who specializes in seizures and asked her about it but she said as long as Maria is wakeable and she eats and drinks when she’s awake, we shouldn’t be worried. Maria has done this before, usually a growth spurt or something like that, but it’s a bit worrying so soon after this other drama.
That Friday she had an appointment with the orthotist because we were concerned about the fit of her new AFOs and her new body brace. She checked them out and they seem to be fine. The body brace left a bad mark on her thighs one day at school but we think the school just put it on wrong. When school starts Cathy will have to be sure to put Maria’s braces on in the morning rather than letting the school do it.
To give you an idea of Maria’s sleeping pattern, that day she slept until about 9:15, woke for the trip to the orthotist and then fell asleep again about 11:30. She slept until I woke her at 4, got a little supper and then went to sleep at 6 for the rest of the night. So she was up about 4 hours for the whole day and had roughly three bites of food (no exaggeration).
Yesterday she did better. She slept until 10 and then took a 2-hour nap in the afternoon, so it’s still above normal but better than it was. She’s alert when she’s awake so it’s fine. Probably.
The weird news is the neurologist’s office called to cancel Maria’s PEMU stay. Our reaction was, “Huh?” That makes no sense to us considering the recent seizure emergency. Cathy called back to find out what the reasoning is because we really would be more comfortable with her having a seizure study but Cathy hasn’t gotten a return call yet. The timing was perfect because if it happens later, it gets into Cathy’s upcoming surgery and after that school starts up again. The annoying thing is we’ve probably already lost our slot.