Tuesday, September 6, 2011


Reagan fell asleep last night sometime around 10:30 or so. We laid her on her wedge in the living room where she slept til about 2am. She was WIDE awake (and fussy), so I stayed up with her from 2-5am until she fell back to sleep. I tried laying her back on her wedge but 5min later, she was back awake. Mike got up and put her in her brown chair and she fell back to sleep quickly and then slept through til 8:30am. She was VERY fussy this morning. Lots of moaning and crying...pretty much nonstop. Then around 1pm this afternoon the moaning/crying stopped. She was still frowning and not happy by any means, but at least she was finally quiet. She's having a lot of chorea today. Moving, moving, moving. She's also still trying to bite herself. We've had to keep either the arm restraint on her or something (thick) over her hand at all times (even though her hands are still super clammy). It's been a tough last couple days. I'm hoping for a better day tomorrow...but I'm not that hopeful for sleep tonight (she's looking pretty wired right now). Please continue to keep her in your prayers!

1 comment:

Jamie - AZ said...

Oh no! You guys had a bad night!! It seems like Reagan is comfortable and often sleeps for long periods in her brown chair. Could it be her acid reflux causing a lot of the unhappy nights? I know after doing a scope/upper GI on Tatum we discovered her sphinctor isn't closing, it stays open and all the acid comes up once she is laying down. Once she sits up she is fine. We are trying to control it with meds for now, but she will eventually need surgery.

Poor girl I will keep her in my prayers and you too! You have to rest that baby. :) Hugs