Friday, November 22, 2013
Reagan fell asleep last night thanks to clonidine! She slept well, that is, until she woke up at 4am!! She was very vocal and not really wanting to go back to sleep! Daddy picked her up and put her in her chair around 6:30, when she was starting to get a little agitated! She's had a pretty good day today! She's definitely still easily excitable (and vocal) so we've had to be careful with her, but she did well with all of her therapies and even trecked through the cold to go get some bloodwork and hip X-rays. The bloodwork was just her routine EPI-743 labs, although we are doing them a little early. I just wanted her checked out after that horrible bad day she had earlier this week! The genetics dr also added on a couple of tests and I asked her GI doc to add on a few vitamin levels to check! Reagan did great for the blood draw, despite the fact that the lady blew her first vein and then had to go to the other arm for more (I'm still doubtful she got enough blood for everything...)! Then we went downstairs to X-ray, we had orders from her PM&R doctor to get an X-ray of her hips (just to make sure everything still looks OK...it's been several years since her last one). Once we actually got back there it only took 5min from start to finish, but beforehand we had to sit in a loud, crowded waiting room for over an hour with an over sensitive child! Not fun! Then as we were leaving, a noisy car in the parking garage almost brought her to tears! Poor girl! Things still aren't back to baseline, but hopefully she'll continue to get there. I certainly wish her sleeping through the night would return, for everybody's sake!! She was definitely fighting it again tonight!