Tuesday, February 28, 2017

Laughy morning, crying night

It's been a weird day for my girl. She woke up laughy/kooky this morning, but in a good mood. We had a nurse orienting and she tolerated all of the talking just fine. She was vocal/laughy, but fine. She had PT at noon and despite getting a little worked up at one point (too much talking), she actually had a good session. Shortly thereafter she had OT and that didn't go as smoothly. She just seemed to be on edge (so we cancelled school/vision for this afternoon). The laughing eventually transitioned into tears and eventually her nurse gave her some oxycodone. It seemed to do the trick and she relaxed and dozed off for several hours. She woke up just before 6 when her nurse was changing her diaper. She was laughy again, but seemed OK. That didn't last long. She just got more a more stressed out as the night went on. We tried both clonidine and oxycodone and neither really seemed to help. She ended up in tears for a lot of the night. Definitely the most miserable we've seen her in a very long time. Sweet girl. When I'd pick her up and hold her, she kept having gas as she'd vocalize so I can't help but think that had something to do with it. Poor thing. Daddy is laying down with her as I type this and I'm just hoping and praying she'll doze off and actually sleep off whatever this is that's bothering her. Ugh. My darling girl. Today is rare disease awareness day and I'm really feeling for my rare girl tonight. Please keep her in your prayers!

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