Thursday, January 24, 2013
According to Reagan's night nurse, she did finally go to sleep around 1:30am and then slept through til just before 8am. Not bad. She was smiley this morning, but you could definitely tell she was a little more on edge. Lots of kicking around, still having temperature regulation issues. She had OT first thing this morning, followed by speech. She did well with both. She ate really well again during speech despite being a little spitty/gaggy this morning (keep in mind, really well for her means 1-2oz max)...this time it was pear raspberry with oats. Then during PT we put on both pairs of her AFOs and were discussing all of the problems with them, and you could tell she was getting frustrated. I don't know if it was the AFOs hurting her, or just us talking, but she started to get agitated and was fussing a little. She was OK though the rest of the day. We gave her a bath and got her pjs on and she started getting a little agitated again. Then the crying started. I gave her a dose of Lortab and then she seemed to calm down. She didn't want to be messed with and she didn't like the loud television, but she was OK. Then just before 11pm the crying started up again! I gave her her bedtime dose of clonidine and eventually she settled down and fell asleep. She's OUT. I'm hoping and praying she's able to sleep the night through and maybe, just maybe, wake up feeling better tomorrow. I can hope, right?!?! Please keep our girl in your prayers! It's been a nice run of good days...I was sure hoping we could string a few more along!