Day -29. 29 days til transplant
We’ve had a crazy week of driving and it’s only Wednesday. Here’s a short update.
Henley’s been struggling with her nutrition and weight gain for about 3 weeks. We saw her GI in Sioux Falls today and tweeked a few things, hoping we see some immediate improvement.
Tomorrow will be a rest day. I’m fried and hope to nap when Henley naps.
Friday we see an orthopedic doctor to review Henley’s skeletal abnormalities. This is a specialty that we haven’t yet seen- but her skeletal survey at diagnosis did note problems with her spine, hips and ribs. We just don’t know much about them.
Weekend will be filled with more rest before starting work up Monday.
Monday Henley will have surgery to place a central line and do another bone marrow biopsy.
I can’t remember all the other appts that follow through the rest of the week without looking at the schedule. Taking things day by day. 💚
