So we went awhile without seeing any seizures and now we're seeing some maybes. But we also switched Lily to Onfi (the American version of Canadian clobazam) and she's wanting to sleep a lot and she's still mostly happy but having some inconsolable cry sessions/tantrums. She's also backing up developmentally--not feeding herself well and not trying to crawl. This could be that the Onfi is making her tired, so first we'll try some of the Canadian brand for a few days and see if there is any improvement. If not, we'll start the switch to Banzel. It could also be that she's coming down with something, but it doesn't appear that way--no other symptoms. It always feels like flipping a coin to see what will work, and we're always afraid of losing what we've gained, but we can always go back if things come undone.
I did a lot of spring cleaning today, organized bills & insurance paperwork, worked on getting Lily an orthopedic shoes casting, worked more with insurance on getting her wheelchair, checked in with Lily's doctors, did 4 loads of laundry, and did some OT with Lily. I think I'm ready for some evening R&R!!! The sun is shining, so I must run outside immediately! haha!!
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