EEG

I should be sleeping. I should be enjoying the fact that my sweet husband is sleeping in an arm chair at the hospital and I don't have to. I CAN'T. I have to get what I"m feeling out this instant.

Today I took Red Fish back to the children's hospital. She is currently having a prolonged EEG. She is supposed to be in the hospital for 24-48 hours (although today they mentioned staying till Monday but I refuse to think about that.) We've spent a great deal of time and effort over the past year trying to unravel some of the mystery of Red Fish. We've seen 5 specialists, switched pediatricians, done almost daily speech therapy practice and read everything I can find online. I realize this is nothing compared to what a lot of parents go through for their kids. Lately it has been extremely satisfying because we've seen so much progress. I'm not complaining- just explaining. I've obsessed over how to help her. I've worried that I imagine problems that aren't there. It has made me a little crazy.

Red Fish does this starring thing that has been worrisome. We had a regular EEG done in June and have tried for months to get her in for a longer one to rule out complex partial seizures. It might just be a strange quirk, or her stubborn way of ignoring us. It could be nothing. And lately she hasn't even done it much, so I felt a little foolish when we went in today. The neurologist and our pediatrician thought this was a necessary test and I was fully convinced. But now it has been months and the residents acted like I was some crazy overprotective Mom. Maybe I'm just tired from last weekend. When I left the hospital tonight to go spend the night with New FIsh I was convinced we would be staying for three days in the hospital only to find they couldn't record a single "episode" and would think I invented them in my head. Nobody said that. I was just doubting myself.

Two Fish just called me and told me that they got two of Red Fish's "Episodes" on tape. Two long ones. By long, I mean around a minute to a minute and a half. The second he told me I felt this ball of anxiety I didn't even know I had unravel in my stomach. I didn't make this up. It's documented. It's either nothing to worry about, or we will know what is going on with our sweet girl. It's this huge relief. One way or the other- we will know. It's one more huge step toward figuring out how to be good parents to our sweet baby girl. This is hopefully the last test/specialist for awhile. The last week has been a week of huge progress. Hearing her sweet little voice since her surgery last weekend has been magical. I just want to grab her and squeeze her every time she says something new. Tonight I talked to her on the phone and she said: "Hi Mommy. Home? Love you." It made me tear up. Oh how grateful I am for miracles both large and small. How blessed we have been. I am not worthy of such gifts as my two girls have been.