Days +104-105: not sure what to think

Mina Brigitta had a terrible day today. She woke up on the wrong side of the bed, was cranky in the morning, took an early nap, was cranky at lunch time, and took a long afternoon nap. In between, she wanted to go for a walk, but when we got out she refused to get in the stroller, so I had to carry her while pushing Isaac in the double stroller. Needless to say, that didn't last long. We ended up sitting on a bench by the side of the street while I fed her a jar of baby sweet potato and chicken dinner. She was cranky when she got up from her nap, and pushed Isaac down onto the floor a couple of times. Just a very hard day for our girl.

BUT, she didn't poop. She only pooped once on Friday, then twice yesterday, and today her only poop was in the morning. And, her stools are looking much better. And to top it off, she ate today. She started the day off asking for breakfast. She didn't eat a huge amount, but there were days last week where she didn't eat a bite until lunch. She had some food at lunch, again not a whole lot, but she was very interested. Then tonight I made moussaka for dinner (eggplant casserole with ground lamb), and she kept asking for more and more. She picked out the eggplant pieces and spat out the onions, but who's complaining? Also, yesterday we thought she might be getting some small bumps on her legs, but they weren't doing anything today.

Her increased appetite today is like a ray of sunshine in a time that has been clouded by increasing worries. With the lack of appetite, the diarrhea, and generally feeling low, then the avascular necrosis in her femur, and finally the positive CMV test, it feels like Mina Brigitta's challenges have been mounting. Seems like she hit a high point about 2-3 weeks ago, when she was getting into the groove of being home and feeling better and better. Things have definitely been harder since. Let's hope her gut issues are finally resolving. Dr. Cowan did say there was a small chance the gancyclovir would fix them. Perhaps she's had a CMV infection in her gut in addition to the c. diff. The biggest worry right now is chronic GVHD, which can be triggered by CMV. We know she's at high risk because of her severe acute GVHD, so we're kind of expecting it. Still, we'd much rather not have to deal with it. At the request of Katy, here's a link for GHVD: http://www.emedicine.com/ped/topic893.htm. I also came across this interesting page that describes some of the long-term issues that Mina Brigitta has to worry about: http://www.emedicine.com/ped/topic2551.htm.