Tuesday, January 31, 2017

Soooooo tense

It's been a bit of a weird day for my girl. She again didn't sleep well last night. She was up making noises and finally around 6:30am I went in and found her completely wrapped up in her tubing! This girl! I untangled her and moved her to her therapy room. I was unable to get her to pee before bed, so I immediately helped her to go this morning, and thankfully she didn't put up much of a fight. She was a little vocal/kooky and super crunchy/tense in her body, but otherwise calm. She had a busy day of therapy and did amazingly well with it all. First she had PT, which finished with her up in the stander and she waved goodbye to her therapist! She stayed up in her stander for 40min or so until her OT got here. She did well with OT and then again waved goodbye again (pulling her hand out of her hair to intentionally wave to her therapist)!! Then 30min or so after that she had speech/school and then vision/school! And again waving goodbye! She was on a role today! After all of that we got ready to give her a bath and attempted to help her poo. Well that was a no go. I'm not sure if that's what set her off or what, but she was crazy tense for her bath (fighting us nonstop and trembling she was so tensed up)! She calmed down a bit after getting her out (and her nurse giving her some oxycodone). Unfortunately she tensed right back up when we brought her back downstairs. She was better with less interaction. I tried picking her up and holding her for a bit but that just set her back off again. She's also been holding her pees all day today and tonight was no exception. I was again unable to get her to go. She's just so tense, there's no way she's going to be able to pee when she's crunched up in a ball! Ugh. Praying maybe she can finally get some much needed sleep tonight. She's asleep right now with the help of clonidine. Hoping she stays that way...

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