Monday, July 28, 2014
Today we haven't seen the improvement we were hoping for. Reagan had another very restless night sleep. She just looks exhausted. And to top it off, her chorea is out of control! So she's exhausted and moving nonstop! Poor thing! Still wanting that hand in her mouth, but she's very bitey, so we have to keep it away the best we can. She was also pretty sensitive today and flipped out a couple of times. Her nurse gave her oxycodone and clonidine and while both seemed to take the edge off a little, neither was able to relax her enough so she could rest and both were only temporary fixes, they did not last long. We were able to get her in the bath tub, but it was a struggle as she was very kicky and flaily! And tonight she was sweating herself wet, so not sure how much good that bath did. We really have no clue what's going on in that body of hers. Are things going to get better...they sure haven't in a while! I'm so frustrated for her! Praying for better days for my girl!