Tuesday, January 27, 2009
Settling into a routine at Children's
We are settling into a routine. The Milrinone is making her feel much better. Her lungs are clearing up and her energy level is back to where she was several months ago. However, we are realizing that she should probabl stay on the Milrinone, and the attached pump and IV line, until the transplant. Hopefully that won't be too long.
We are starting to develop a life in the hospital, as opposed to suspending our lives while here. Emily is starting physical therapy, a tutor is coming every day for two hours, and she has "activities" in the activity room. They are bringing a dog in to play with her "pet therapy" and she has charmed all the staff. They still wake her up a few times a night (and her mother) and the PICC line continues to be a hassle (sometimes clogging).
We had some great visits: Lynn, Steve, and Courtney Roberts, Kathie Gow, and John Ogden. Kathie took some pictures that I will try to attach.
Emily qualifies for a "make a wish" and she is thinking of things to wish for her. If anybody has any novel ideas let us know. She has thought of doing a segment on HCM or heart transplants on the Today Show. John Ogden is trying to get olympic gold medalist Ryan Lochte to call. I have suggested that she ask for a new airplane for her family, but that hasn't really gone over well. So comment on the blog if you know her and think of things that might be impossible for her to do otherwise.
We're hanging in and appreciate everybody's support.