Saturday, May 24, 2014
Reagan had another moany night last night with little to no sleep. Medication wasn't really helping. She was OK during the day but definitely more tense than previous days. More "off". Very sensitive (especially to Daddy's voice, which made her cry a couple of times), temperature regulation was way off (hands and feet were ice cold but she kept sweating her back wet), and a lot more chorea. She was happy to see Grandma though...but we had to be careful not to get her too excited. Tonight she was very tense and giving her clonidine actually had a paradoxical effect on her, sending her from crazy to crying in a matter of minutes! Not good. Thankfully Lortab seemed to calm her down enough for her to doze off a little in her chair. I do not have high hopes for tonight. Praying that she can get some sleep and wake up improved tomorrow. We still really have no idea what we're dealing with here. Are these bad days? Is she reacting to something else that's bothering her (ears, tummy, who knows what else)??? Praying for her to get over this soon!