Day +63: evolving plans for meds

They no longer think she needs another dose of Infliximab. This is good, because the monoclonal antibodies are highly immunosuppressive. This will enable them to switch her antiviral and antifungal meds to ones that can be taken by mouth, so maybe we won't have to go home with IV meds after all. Most kids go home still getting fluids at night, but maybe she'll start drinking more so we won't have to. Also, they are considering weaning her off the steroids altogether, and perhaps substituting Cellcept.

Mina Brigitta's head is all fuzzy now. Her hair is about a quarter inch long, and starting to stick up in spots. It's pretty dark, too, and her eyelashes and eyebrows are much darker too. I'm sure her her was going to turn dark eventually anyway. Will be interesting to see if the color sticks. She was actually a little hyper/wired when I got back to the room tonight. She woke up early again, at 6:15, but then had an early nap from 9:30 to 10:30 after they gave her Benedryl with her IV immunoglobulin (IVIG). Then she didn't nap again all day long. So she was tired when I got here, but in a happy, giddy kind of way. It was very fun to see. She seems almost ready to me.

Hope everyone has a great 4th of July weekend. We'll be here at the hospital, of course, but will be excitedly planning the move home. We do have windows in the room that face east and kind of north, and someone told me we should be able to see the San Francisco fireworks from here. We're used to spending the 4th at our friends Rich and Olgica's house in the hills south of Oakland, where you can see half a dozen different fireworks displays. Not this year, but it would be fun to see some fireworks nonetheless.