Sunday, November 17, 2013

No sleep & pain

Reagan did NOT sleep well last night! In fact, I'm not even sure if she slept at all! She was tired but she was restless...even though she was having long blinks, we never really witnessed her asleep! Today was a very similar day yesterday. No smiles, lots of tension, plenty of chorea, major temperature control issues (excessive sweating but ice cold hands/feet)...then add in a couple crying outbursts and nausea tonight...I have NO idea what's going on with my girl. She used to have way too many bad days, but everything was so predictable we knew when it was going to come and when it was going to go! Now, we have no idea what's going on! I certainly wouldn't think she would be due for a bad day right now, but tonight she sure was miserable and seemed to be in serious pain! We tried Clonidine, Lortab, & the Lidocaine pain patch (on her forehead, calves, and back of her neck)...nothing seemed to help!! She did finally doze off in my lap, but she woke up as soon as Mike tried to move her! He tried her in her bed, then in her chair, and then I even tried to help her poop (but she was way too tense for that to work)...she finally dozed off on her side on the floor! I'm praying she'll stay asleep and wake up feeling loads better tomorrow!! Poor sweet girl!

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