Wednesday, June 22, 2016

Sleep deprived

Reagan did not sleep much again last night. She woke around 2am fussing and I was afraid she had taken a turn for the worse. There was a lot of thrashing and flailing back and forth, but she really didn't even have her eyes open. I gave her some Lortab and with a lot of patting and consoling, she eventually fell back to sleep. She woke back up around 4am and was up. I changed her and moved her to her chair. I don't think she ever went back to sleep. She's still having lots of movement today. Lots of kicking and putting her hands in her mouth. Super smiley and happy. Very rolly. Flipping over onto her side and then onto her tummy (and getting stuck)! Super spunky and vocal. She had speech this morning and did surprisingly well considering how active she was. After speech we had an appt with the Comprehensive Care Clinic. They provide complete care for complex kiddos like Reagan. From pediatrician, to nurses, to nurse case manager, to child life specialist, to dietician, to family liaison, to psychiatrists...they've got you covered. For the time being, we are still planning on keeping our regular pediatrician, but they can really do it all. A one stop shop if you will. Reagan was good the whole way there, but did get a little crazy when we tried to go and eat lunch before the appt (the music set her off). We sat outside and she was fine. She was great for the appt. A little kicky and kooky at times, but good. She had school as soon as we got back and did very well. She's been pretty high energy tonight (and grinding her teeth)...not sure how we're going to get her to wind down and go to sleep. Getting desperate here. She did have one strange seizure like episode tonight around 9pm. She was on the floor and I went over to pick her up and I'm not sure if I startled her or what, but she started yelling out over and over again and her head was fixed to the left. This lasted several minutes before she finally snapped out of it. Not a fan. Really hoping that's the last we see of that! This growing us all a scare.

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