Lily had a neuro apt. on Monday and we upped the study drug and Keppra b/c she had been having anywhere from 3 to 4 grand mals a day and I was so frustrated when I came in.
So far this combo is keeping her just having one a day, but it is totally unpredictable and when it comes it is hard and wipes her out. Her drops are all but gone, but she is really tired on this very similar to Klonopin drug. I hate her napping all day. She went to bed last night at 6:30pm. And that wasn’t following a seizure. She is just wiped out. So let’s see wiped out from meds or from seizures. Isn’t life so fair. I know I was told life isn’t fair at a young age, but this is a little ridiculous.
Tuesday night Lily came down with a fever and by Wednesday AM it was over 103! No symptoms, no pain except for the uncomfortableness from a fever. I had to work and her nurse couldn’t come early so I had to take her to work with me. But by 1pm her fever was gone, after Motrin, and never came back. Strange child. She just wanted to make things complicated and make her mom worry.
Tomorrow we are going to a party that one of the therapy companies is throwing. It should be pretty fun. I like free fun for the kids. 🙂
Have a nice weekend!
Oh I totally forgot to share, we are for sure, most indeed having a boy! There was no hiding his pride and joy. We even got the enjoyment to watch him play with his “toy”!