Tuesday, June 28, 2016
Reagan had a bit of a rough night last night. She fell asleep in my arms so peacefully (with the help of clonidine), but then had a major clonidine freakout when Mike tried to move her to her bed! Eventually a dose of Lortab seemed to counteract the negative effects of the clonidine and she finally went to sleep around 1am. Unfortunately that didn't last long, she was back awake at 3am! I was able to get her back to sleep but by 5am she was back up and this time for good. Thankfully, she was in a good mood, a little vocal but good. This morning maybe 15min before her nurse arrived, she did have another "episode" similar to yesterday. She again was very sensitive in her eyes and started the blinking (this time not lasting nearly as long) but then that transitioned into the wide mouthed yelling out maybe two times and then the head turn and then fixed to the left. She snapped back to it very quickly though and her head wasn't turned/fixed for long. Still not sure what triggered it, but definitely seems related to the sensitivity in her eyes. Despite that little hiccup, she actually had a really good day today...a little kooky/excitable but good. She had PT this morning and did well for that. She spent some time in her stander, but she is having some issues with one of her AFOs (that's causing a pressure point that now appears to be bruising), so we're going to have to sort that out with the orthotic place before wearing them again. This afternoon she had school and did well for that despite being a little excitable and distracted by the torrential downpour outside (that I had to drive through to go pick up Ryan)! She was good tonight...hoping we all get a better night's sleep tonight!