Calm Amongst the Chaos

Sunday Lily had 5 for sure seizures and we think maybe one more because of the way she passed out on us out of the clear blue sky. So probably 6 big seizures that knocked her out. Coincidentally I upped the study drug that AM. I lowered it back on Monday and called the Dr. fuming. No call back that day, and Lily only had one. Tuesday, Lily had three drops and nothing else. I kept the study drug down and will continue to keep it there and I refuse to ever up it again. Well lo and behold FINALLY I get a call back from a neuro other than our own and I said, “never mind” I explained everything and he said we can still increase Keppra if she has an increase in seizures. But I think, scratch, know that the study drug while yes it helps drops, it makes her GM’s worse so I think if we stay on at a low dose, we should be ok.
Monday Lily was worn out, cried the whole time on the horse and therapies seemed like a bust so it was a bummer. She was just so tired and I don’t blame the poor little bug. She finally seems to be feeling better and out of her haze. She is home with her nurse and I am on my way there and since I got no phone calls, I am assuming the day went well.
School starts on Monday and tomorrow we meet the new teacher…. please let her be good. I doubt she can hold a candle to Mrs. Jean and Mrs. Amy, but I am praying she can and she will! Wish us luck!
I will post on Friday with an update!
Check out Flickr, lots of new pictures! I don’t have a ton of Lily bug unfortunately, but there are some cute ones!