Monday, September 7, 2009

Up again

Last night was not a good one. I knew we were in trouble when Reagan fell asleep at 7:30pm and would not wake up to take her medicine. I had to just put it in her mouth and move her chin around until she swallowed. Certainly not the best way to do it but we really had no other option. Then just as we were crawling into bed at 11:30pm, we heard her fussing. Mike put her in bed with us and she fell back asleep. She woke back up at 2:45am and she was wide awake. I got up with her and gave her a bottle and she was talking and squealing up a storm. So funny. I couldn't be too mad at her. We sat up til 4 and then I finally just laid her in her bed awake. That lasted all of about 15min and then Mike got up with her. It only took her 10min with Daddy to fall asleep! Turkey! I don't think it had anything to do with decreasing her Clobazam...at least I hope not. I really think it was the fact that she didn't take but one little nap yesterday. Just in case, I decided to change her Clobazam amounts around. She was getting 1/2 tab 3x day, so today I gave her 1/2 am, 1/4 midday, and 3/4 pm. I think we need to phase out the midday dose anyway...and for sleep I would think the only dose that's really important is the pm dose. But what do I know. Maybe I'll email Dr. Chugani and ask his opinion on it. Seizures have been beyond frustrating. Last night when she woke up, they were nearly nonstop. No wonder she was having such a hard time going back to sleep. I need to video them so I have some documentation of what they look like right now (lots of twitches, a few spasms, and the myo-tonics). It's probably been a year or so since I've video taped any of her seizures...it's just so disturbing...but I think it's important to keep track of how they evolve over time. Maybe as we start up the Banzel this week, there won't be anything left to record!?!? That would sure be nice wouldn't it. Please continue to keep her in your prayers!

1 comment:

Lacey said...

I hope they can get these siezures under control. Have they ever been under control? Jax have actually gotten better when we upped some of his meds, but his EEG still looks like crap.