Tuesday, March 13, 2012

Fighting off those bad days...

We don't think Reagan slept very well last night. I got up at 4:30am to change Ryan's diaper and Reagan was very much awake and kicking around. Mike trying laying in bed with her to see if she'd go back to sleep, but no. She did however lay there quietly til 8am. She's been a good girl again today. She did great during OT and spent some time out on the swing this afternoon. She's been very smiley, a little vocal, a few love bites (for her nurse and Daddy), and lots of movement. We've also noticed some temperature regulation issues. Her back has been quite sweaty but her hands and feet have been a little cool and clammy. Uh oh. We know what that means. Hopefully she'll hang on and have a decent day tomorrow. Tomorrow we have the new Wed nurse working (she's only worked one other day, last Wednesday, when Reagan was throwing up nonstop). We don't want to scare her away! I'm going to try increasing her clonidine tomorrow (and probably tonight). On a good note, we do have a night nurse tomorrow (and Friday night), so if Miss Reagan decides not to sleep at least we know she'll be well taken care of! Tonight the chorea has really kicked into full gear and she's a little crazy. Come on clonidine...this girl needs sleep!




1 comment:

Anonymous said...

Loving the swing pictures. Reagan always has on such cute outfits. Ryan looks so peaceful in that picture. Praying for good days and sleep for you all.

Shonda