Friday, December 14, 2012
Reagan was asleep last night (in her chair) when the nurse got here. She wheeled her into her therapy room and a little while later I heard fussing. I went in and she was awake and sounded upset. Thirty minutes or so later, she had a dirty diaper, so we figured it was just her tummy hurting her and hopefully she'd feel better. Better only lasted for another short while and then the crying started! It was pretty clear we had jumped straight into bad days! The crying and fussing continued on all night. The nurse spent half her time walking around with Reagan and keeping her in the kitchen, hoping we would not hear her and be able to sleep! Sleep wasn't happening, but that wasn't Reagan's fault...Ryan's other top tooth is coming through and he is not sleeping worth a flip! He woke up crying every 1-2hrs all night long. So it was a LONG night...and then we had a LONG day. Reagan was pretty much miserable all day long. When she was awake, she was crying/moaning. Sometimes she seemed better when you would hold her, sometimes she hated to be held and only wanted to be left alone in her chair...all of the time she seemed to prefer being held and walked around (which no one can do for very long because she's so heavy)!! Tonight she was really giving us hell...I swear she was fighting with us. Thrashing around, biting, and kicking while I tried to change her shirt and then diaper! Mike tried holding her and she fought him as well. Then I picked her up and walked around with her and she calmed down! I really think it was a fit. A well deserved fit...because something is obviously hurting her...but a fit nonetheless! I wish we knew what it was. I hate to see her suffer the way she does. This past good streak did not last nearly long enough. Today nothing seemed to help other than the Ibuprofen. That would seem to support the idea that something inflammatory is going on. Not sure what or how we would identify what? I'm definitely thinking we need something else...something to better help her with this pain (if we can't stop it, we need to treat it)! I'm considering talking to her palliative care doctor about the Fentanyl patch. Any suggestions/opinions on that??? We're also still considering the Lyrica. I sure wish we didn't have to eeny meeny miny moe medications!! I just want some relief for my girl! Please keep her (and her rascal brother) in your prayers! It's going to be a loooooong weekend!