Saturday, July 25, 2015

Neurologic sensitivity

Reagan's sleep last night was still iffy. She wasn't as vocal as the night before, but I still think she was up most of the night. She's had an OK day today. Still very tense in her body and her temperature regulation is way off (super sweaty back and cold feet). Her nurse kept her on the floor most of the day to try to keep her from sweating through her shirts! She's been in good spirits but sensitive. More sensitive to loud noises and wind than talking or music. Her nurse even watched Into the Woods with her so that mad it obvious that she wasn't sensitive to music like she normally is. It's definitely a weird sort of neurologic sensitivity. She quints her eyes a lot and jumps out of her skin at the slightest sudden sound. She had tons of gas today and continued to hold her pees (unless we used the water trick). She definitely seemed to be having some tummy pains but that could've been a combination of both the gas and the pee. Tonight she got in a lot of snuggling with Grandma and mommy! We really wanted to try to get her in the pool tonight but she was just too sensitive to try...maybe tomorrow! Hoping for some solid sleep tonight for my girl! We learned tonight of the passing of sweet Gwendolyn. I can't even believe it. I've followed Gwendolyn's journey with SMA for probably 5+yrs now and my heart is breaking for her family. Please keep them in your prayers! #GwendolynStrong

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