Tuesday, August 9, 2016

Kooky, screamy, and tense...oh my!

Sleep was not good last night for my girl! She woke up at 1:30am fussing/vocalizing and had to be moved to her chair. She dozed off pretty quickly once in her chair and then slept til morning. Not a huge fan of her sleeping in her chair, but I guess I'm just glad she slept! She's been pretty kooky again today. Maybe even a little more so than yesterday. Super vocal. Lots of screaming. Not crying screaming, just super high pitched, loud vocalizations! A LOT of them! She did doze off twice today. Once this morning just in time to miss PT and once this afternoon, joke was on her because OT had already rescheduled! She didn't sleep nearly as long as yesterday, but they were decent naps. Although, they didn't seem to help relax her in the least. She's been SO tense today. Super rigid in her body, grinding her teeth, tons of chorea...and of course the screaming. Whew! It's exhausting just to watch! Tonight she escalated a bit right around bed time and it took both Lortab and clonidine to finally calm her down enough to get her to sleep. As of now she's in her bed asleep! Praying she stays that way!




Ryan hugging his cousin Patrick! Patrick is so good with Ryan and just follows him around nonstop! :)

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