Last week was difficult. Eden needed daily transfusions at Children's, and Wednesday through Friday, Eden had appointments at OSU.
In an attempt to ease the pain she is experiencing in her legs, it was mutually decided to do a one-time dose of radiation. In order to
do it, Rourke had to meet with the doctors on Wednesday, have her legs marked and fitted on Thursday, and finally received the actual
treatment on Friday. We are hoping this will help to get her back on her feet....literally.
As of today, she is still not walking, and feeling pretty uncomfortable. Emotionally, she is up and down. Her "window" of feeling
content is brief. In our day-to-day, this just means Rourke, Hope and Lisa are doing their best to keep up with Princess Eden's
demands, and balancing enough pain medicine without overmedicating. This is a challenge, but I believe her
core caretakers are very good at reading what Eden needs and does not need.
Right now she's enjoying her bubble machine in the bath, creating her list of Christmas gifts she wants to get her friends and family
and watching Disney channel. She has her regular appointments at Children's Monday, Wednesday and Friday.