Saturday, June 6, 2009
So much for the melatonin. Reagan was up a lot last night and she's been up pretty much the entire day today (I wonder if it can have the opposite effect). We're still going to give it a couple more nights to see if it works, but so far, not so good. Despite the lack of sleep and the huge amount of seizures/twitches she's having, Reagan was in a pretty good mood this morning. That is, until we got to late afternoon without any hint of a nap. She fell asleep right before we left for the Epilepsy benefit at Rajun Cajun and woke up the second we put her in the car. That made for a very fussy little girl. And even though we were inside, she was getting very hot and flushed from of all of the crying. She finally settled down and slept about 15min or so in my arms, but that was it and it wasn't enough. We were there long enough to eat and socialize a little but Reagan was not being very cooperative. It's funny, our neurologist's nurse was there selling the raffle tickets for the Harley Davidson. Maybe Mike will win...he did buy two tickets. I'm glad though, there really seemed to be a good turnout! We were there at 3:30, probably the least busy part of the day, and it was super crowded and they had already sold nearly all the raffle tickets. It was all for a good cause. Reagan did not go down for a real nap until after 7pm, which I'm sure spells disaster for our sleep tonight. And once she went down, she was OUT! Finally around 9pm we picked her up out of bed and tried to wake her. It didn't happen. So I fed her a bottle and gave her all of her medicine in several spoonfuls of food while she continued to sleep. I changed her diaper and put her to bed around 11pm and other than a few stretches here and there, she really never got close to waking up. I felt kind of bad giving her Melatonin when she was already so out of it, but it's worth another try. It sure would be nice if we could find something that would help her sleep at night again! She really only slept through the night for a few glorious months, and we have wracked our brains to try to figure out what was her winning recipe for sleep. Mike thinks it was the Vigabatrin, I think it was more likely related to the Klonopin, but who knows at this point. We're just grasping at straws, we're so desperate for a good night's sleep right now. Please keep her in your prayers...less seizures and more sleep!