Thursday, July 23, 2015
Reagan was very restless (AGAIN) last night. Ugh. We're definitely seeing a pattern here. Less real/good nights of sleep and more of an extreme...either sleeps nonstop or super restless and doesn't sleep at all! I got up with her multiple times last night because she was very vocal and had turned herself upside down in bed. Each time I got her resituated right side up and under the covers but I don't think she ever went back to sleep. The from 6-7 she started getting more vocal. When I finally dragged myself out of bed, I found her up at the top of her bed SOAKED in pee! Poor thing! (Yes, that meant stripping all of her sheets off and more dreaded laundry! It never ends!) She was super crunchy and tense this morning so we decided to go ahead and cancel her PM&R appt. We just weren't sure how she'd do with it. She took a nice nap this morning and was awake by the time OT got here. She's been tense in her body but OK in spirits...even giving us sweet smiles! This afternoon we helped her get her poo on and I think that helped a lot! She's such a clencher...she clenches it in and I can't even imagine what sort of tummy pains that must cause! She definitely seemed relieved afterwards. She's starting to have some temperature dysregulation issues now and some clonus in her feet. I started the pedialyte last night after her crying episodes, just to be on the safe side. Hoping she can mellow out and have a great weekend this weekend! I would like to ask for some prayers tonight for Gwendolyn. I've been following Gwendolyn and her journey with SMA since she was little (she's now 8 and has defied all odds for SMA). She has an amazing family that dedicated their lives to raising awareness and money for SMA research...what every family of a medically fragile child wishes they could do! It was Gwendolyn's mom talking about giving Gwendolyn pedialyte during her autonomic storms that inspired me to start giving Reagan pedialyte during/before her bad days which has resulted in MAJOR improvement/ceasing of her bad days. Gwendolyn is struggling right now. Something is not right and her family is very worried. Please pray for her to fight through this like she has so many times before!