So ...we are back in Spokane. Averie is actually doing pretty well. I think we are finally getting on top off the myoclonus seizures...only see movement in her toes and hands. Yay!!! For some reason we are seeing seizures in her mouth area. She's responding to boluses off Kepra so that might need to be increased.
Another thing on the to do list is a gtube. Everyone agrees she likely won't go home with out one. I am TOTALLY open to this...if only just to make sure she ALWAYS gets her EPI medication. Surgery consult some time today ...I'll keep you posted.
Also slowly spending more time on high flow (5+ hrs) and less time one bipap! So proud of my girl!