Monday, November 26, 2012
I'm not really sure what's been going on lately with Miss Reagan. She's been good during the day, not overly happy, but content. Still a few little things off like temp regulation or chorea (although that was improved today), but her nights have been WAY off! Last night she went to sleep and then woke less than an hour later crying! Again! Daddy tried to calm her down but it just wasn't working, so we moved her back into the living room and put her in her chair, where she promptly stopped crying! She eventually dozed back off but that was short lived. She'd doze for a minute or two and then wake up flailing (and wiping her face) for 8-10min, over and over and over. Finally I put her arm in a restraint just to keep it out of her face and that seemed to calm her a little. She still didn't sleep though. And she didn't rest today either! Poor girl. She's got to be exhausted! She was a good girl today. Her OT went on and on about how well she did this morning and then this afternoon she had vision/OT through the school system! She's been smiley all day...but oh so gaggy! Lots of coughs and gags but no throw ups all day...that is, not until tonight! Tonight she threw up A LOT. I drained her tummy, but that didn't seem to give her any relief. Tonight we switched back over to pedialyte. We've had to do that once a week for the last couple weeks. Not sure what's causing the increase in nausea! Her doctor did order labs the other day to check her blood Nortriptyline levels and they were undetectable! (Nortriptyline is what she takes to help with the cyclic vomiting.) So despite taking a pretty high dose of Nortriptyline 3x a day, it's not showing up in her blood! His suggestion was to increase her dose, so this week, that's what I've done (of course that also means we'll have to go back in for blood work again to check her levels). Hopefully we'll see an improvement in the nausea department. And more importantly...hopefully we'll see an improvement in the sleep department! My girl needs her rest!! Thank you for keeping her in your prayers!