Sigh… so Lily has had two seizures today and it is just a little before noon. These are the hard ones that wipe her out. She had one after horse therapy and then just a minute ago before lunch. We have to leave in 30 minutes to go to Music and I am afraid she …
So two days into Depakote I got a phone call from Lily’s school saying she was sick. Bad diarrhea and dry heaving. No high fever and Lily’s nurse was pretty sure it was a reaction to the new drug. Knowing we were leaving and having Grandma in town I decided to stop changes. Put Topamax …
So bright and early this morning I met with Lily’s teacher, the counselor, her OT and ST for Lily’s IEP. It went as well as to be expected. Everyone is so nice and although I hear horror stories, I have yet to run into any. A lot was copied over from last year and it …
Lily Bug went back to school on Monday and so far things are going really well. I like her teacher and all the aides are the same, that is very comforting! They all know Lily.Unfortunately Lily has had a seizure every day at school, but Wednesday. Yesterday, Thursday, she had two before school, one at …
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. …
Very late in sharing these, but Lily’s PT works for this awesome agency that does these great little parties for their families. This past June they had Christmas in June and we had a great time at an ice skating rink. It was such a nice escape to leave 110 degrees and walk into a …
Cancel that nomination you all had for me for Mother Of The Year. Due to the fancy wide world web I saw that we would be waiting a long time for the school bus next week. Lily starts school on Monday the 28th. Oops. I still don’t know who her teacher is. I think I …
I never put Lily back on V. I lowered the Keppra to slowly wean, I wasn’t cool with the whole “just take her off”, and I lowered her study drug. Well I guess she did pretty well when I was away this weekend, but Andrew “accidentally” gave her a full dose of Keppra the whole …
That is me screaming! Did you hear it? I’ll do it again! AARRRGGGGGGHHHHHHHHHHHHHH!Sigh…..heavy sigh……………..I’m pissed. I’m so freaking pissed. I am so not in the mood to “put it lightly”. I am so pissed I went against my instincts and went ahead with this damn study. I’m pissed.I thought Lily was going into status on …
Oh my oh my. What a mess we are in. Sigh. I don’t know what happened, but Lily was no longer doing awesome on the combo I put her on. She started having tonic seizures where she just shakes and then screams and cries for a half hour later. Not a good thing. At least …
Calm Amongst the Chaos 