Thursday, June 4, 2009
So much for increased sleepiness from the Keppra increase (at night anyway). Reagan woke up only 2hrs or so after I put her down for the night. And then it was the same old story, up and down the stairs until I finally caved and transferred her to the sofa. So far, no changes noted from the increase (except maybe a little more sleep this afternoon). She woke up this morning very twitchy and having the usual amount of seizures. I did finally talk to the neurology nurse who confirmed that the doctor wanted to increase the Keppra exactly as I had already done. I'm surprised because I thought I was being a little cautious...I really thought he'd want to go up higher. She said for us to watch her over the weekend and that if we were going to see improvement we should probably see it in the next couple of days. Please keep that in your prayers! Reagan seems to be doing well with switch over to soy. Today was her first full day of soy. I wouldn't say she's guzzling it down like she did with that first bottle, but overall she seems to be drinking a little more of it. First thing tomorrow morning we're going in to Texas Children's for a gastric emptying scan. Her GI doctor thinks that she may have slow motility which could be responsible for her lack of hunger. Hopefully it will yield some sort of insight into her extensive tummy issues. The problem is, she can't have anything to eat or drink after 2am in the morning...so if she wakes in the middle of the night (which she does often), she can't have any koolaid to calm down. We're on our own. Should be fun.