Sunday, June 1, 2014
Reagan slept well last night and woke up a sweet girl, but with a slight bit of tension. It was something we noticed all day. She was just a little more tense in her body, a little more sensitive to certain activities or noises, definitely trending in the wrong direction. Her hands and feet were clammy but not cold (and no other temperature issues). Grandpa came over this afternoon and Mike and Ryan went swimming with him while I pushed Reagan in the swing. It was a little warm (and still lots of mosquitoes) so we didn't stay out long. Tonight she was crazy into her hand and escalating in her kookiness. I gave her a dose of oxycodone to settle her down, but it took a while to work and even when it did, she still needed to be held to fully calm down. Finally about 15min after her pm dose of clonidine she dozed off. Hoping she sleeps tonight and just to be safe we're going to start the round the clock Zofran. It's hard because the last cycle didn't follow the usual 11 day cycle, so now we really don't know what to expect (but we can see it in her body that she's heading the wrong direction). Hopefully she'll have a short go of it this time around...she's scheduled for an ABR/MRI for Friday...I really don't want to have to reschedule it again!