Tuesday, December 31, 2013

Day 6

It's been another rotten day for my girl. She was up a lot last night, fussing and not happy at all. She's been constantly wiping at her nose, so we tried to restrain her arm...she did not like that at all! Needless to say, it was another loooong night! Today hasn't been much better. She's exhausted, but completely unable to sleep! She dozed off once (after a dose of clonidine) and we really thought (hoped) she was out and would sleep the rest of the day. She woke up an hour and a half later and she was not happy! That's the thing, when she dozes off, she's been waking up super agitated! I don't know if her fussing today is pain related or neurologic (perhaps upset at her inability to sleep)! I don't know. All I know is that we're all super frustrated for her! Why is it day 6 and she's still battling bad days?? It's just so unfair! Tonight we really thought she had turned a corner. Right around 9pm she settled down, stopped fussing, and even gave us some smiles. She was still very tense (very stiff and having lots of chorea) and still had clammy hands/feet, but she seemed more present. She was making eye contact...even smiling here and there. But after giving her clonidine (she was still wide awake after midnight), she started freaking out a bit. Mike tried laying down with her and she just escalated! Eventually she did settle down and fall asleep! Hopefully she stays that way! I was glad to see smiles tonight but I'll really breathe a sigh of relief once she gets some sleep! Praying for a better 2014 for my girl! (FYI-Ryan's tummy looks so much better today! Other than a random hive that popped up on his finger this morning, he's looking like he's almost done with this crazy allergic reaction!) 

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