Sunday, July 27, 2014

Still stressed

Today was very similar to yesterday. Reagan slept in her chair last night, she did wake up fairly early, but I think she got some sleep. Today she's continued to be tense, vocal with over stimulation, and just overall a little kooky. She did not nap at all today. Her nurse gave her oxycodone at one point to try to take the edge off and hopefully allow her to rest...didn't happen. She's still very crunchy, hands in the mouth A LOT, lots of chorea, a little gunky in her throat at times but no actual nausea (but she's still getting Zofran). Not exactly sure what these days are. Are we headed toward bad days, are these milder versions of her bad days??? No clue. It's hard to get your bearings when you have no idea where you stand! Hoping and praying for her to settle down in the upcoming week and actually have some legitimate 100% good days (I honestly don't remember when the last one was)!! Now, on to trying to get this restless girl to sleep tonight!! 
Did I mention she was bitey? 

But still giving us little smiles here and there! 

1 comment:

Clarissa said...

Sounds like Abi the last few days, this morning being the worse so far. She vomited first thing this morning after waking early, then bit herself while I was in the bathroom (big brother was supposed to be watching her, but was playing next to her instead of actually looking at her).. Abi is sounding junky and keeps trying to cough, very "crunching" and not happy.. akso was sweating like crazy this morning. Anyway... I will be saying a prayer for Reagan!!