Calm Amongst the Chaos

Mama of 5 seeking calm in the chaos

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 time I was gone. I came back and fed her Sunday night and lowered it again as well as the next AM and Monday she had 4 seizures. Not sure if it was the Keppra, who knows, but coincidentally Neuro called me yesterday, on his own, I didn’t call him, and he said I tricked him and she was not supposed to be on the V while on the study and I very frankly said “I know she can’t, and I didn’t put her on, BUT at this point I don’t care about the study and Lily’s well being is far superior”. He then kinda rambled and agreed, but said he cannot give her the study med, which we all agree is helping with the drops, if she is on V. So I said I understood, she is not on V, he was relieved. I said I am keeping her where she for now and even though she isn’t perfect I am not making too many changes at once.
It is all just a big mess right now and I don’t want to take one away and add another and lower another. We just have to do this all one step at a time and my step right now is lowering the study drug. Which I didn’t tell them, but they can kick rocks, that is what I am trying right now.
So I don’t have much to update. Yesterday she had 4 grand mals and after one GM she had a cluster of myoclonic jerks that really upset her.
School starts next week. I have no idea who the new teacher is yet and frankly I am not even sure what day school even starts. You would think you would get something in the mail, or something. Oh well, I do have a computer and I guess these days that is all we need.

Bette Midler was incredible and I recommend her to anyone thinking of going! Absolutely wonderful!

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