Friday, September 25, 2009
Today has been a rough one. For Reagan and for me. Sleep was fine last night, but this morning just as her Feldenkrais lesson began, Reagan had a major meltdown. 4.5hrs of nonstop screaming crying, a nap, and then on and off crying for the rest of the afternoon/night. We had to cancel her feeding therapy and good thing we did because it would have been one miserable session. I'm not sure what was bothering her, tummy pains if I had to guess, but the seizures were ridiculously bad as well. She had nonstop twitches and seizures pretty much all day long. She's also having way more of the bigger ones and they are morphing more into just plain old tonic seizures. For a while we were calling them myo-tonics because they were brief and only her arms would stiffen out, but now they are moving all the way through her body, her back is arching and her legs are stiffening out as well. I really hate these. And it's just so frustrating that things seem to be getting worse rather than better. We're seriously running out of medications! What are we going to try next?!?! Meanwhile...no one seems to care. There's no sense of urgency. No one (other than us) seems concerned by the fact that our daughter is literally having 1000+ seizures a day! Are the doctors just that jaded or is there really NOTHING they can do to help? Our neurologist has been out of the office for 10 days straight, so it's not even like we can call and talk to him about it. But even if he were here, he wouldn't do anything. Here we are 2yrs into Infantile Spasms and Reagan hasn't had a single seizure free day or even responded positively to any of the 14 medications she's tried! I'm beyond frustrated. I was thinking about this today, as my mom was holding a screaming Reagan in the other room, and I started feeling lightheaded. I don't know if that's the right term, vertigo is probably a better explanation of it. I was in the kitchen, I bent over and when I stood back up the sink was moving back and forth in front of me. I felt like I was on a boat. It was really bad at first and I was afraid I might fall over (thank goodness I wasn't holding Reagan), and even though it lessened over time, I could still feel it hours later. It was very strange. I've never experienced anything like it. Hopefully it was just stress and not a big deal. On a positive note, right before Reagan went to bed tonight, she really turned things around. She was being super cute and talkative. Whispering sweet nothings in her Daddy's ear! Hopefully that means she's feeling better and she'll sleep well tonight and wake a changed baby tomorrow. Please keep her in your prayers, it's been a rough day and we sure need a good one tomorrow!