Saturday, October 3, 2015

10 Second Window

The picture above is from a few days ago, before Mira starting having her toy turn into a consistent seizure trigger. The past 2 days, Mira hasn't lasted more than 10 seconds with her toy in front of her, without erupting into an intense seizure. The window of opportunity to remove it before she has the seizure closes extremely quickly and we seem to miss it. We have tried 4 or 5 times since Thursday evening, at various times of the day and every time, the result is the same. We hate to keep it from her, since she loves it, but I feel as though we have to take a sabbatical for a while, at least until her seizures start to come back to baseline. She seems to be doing alright the rest of the time, when she isn't in front of her toy. A few random myoclonics here and there, but nothing to the degree when she starts playing.

Ironically, Mira has been doing a fair amount of babbling and vocalizing - unprovoked of course, but great to hear nonetheless. We even went through an entire dinner out, including a 30 minute wait to be seated, in a very crowded and noisy restaurant. Mira was amazing during all of it. Not a single whimper or cry and she was even smiling a bit at times. She finished off a couple of bottles during dinner and was content just kicking her legs and moving around in her chair. We couldn't have asked for anything more, except the boys not acting like, well, boys.

No comments: