Beanie's Blog: Have Courage, Be Kind

Today was another good day! Her numbers are slightly higher than yesterday which is amazing. They told me not to be disappointed that they weren't higher but that the anti-graft rejection meds they give can cause the climb to be slower. I told the doctor that I was thrilled with her numbers! After a few minutes of medical talk we were eventually laughing over Olaf and the adorable antics of Selene. Dr. Seif said "Well, if we can spend rounds talking about Frozen then things must be pretty good."

A little while later I got a call from Megan, the intake/outpatient coordinator. My mind was racing with why she might be calling, she must know we are in and settled. She started with "I hear we have signs of engraftment! I wanted to set up a time for you to meet with Ellen for your outpatient learning/care." I know that they do it on the early side (which is great because I have a million questions), but the fact that they are already scheduling it for this week is so encouraging. It means that baring catastrophe, the doctors are planning a standard time discharge.

Totally random but she tried to brush her hair with a doll's hair brush today, and then she asked me to blow dry her hair again..but not during bath time. I still don't know what to think about that or how much to say about her hair. She saw her reflection in the mirror and looked startled but smiled and said "See Beanie!" So I assume she knows it's her, that her hair is gone and that it doesn't register as an issue. I really think she looks amazing and I love touching her head. But I just want to be sure that I'm handling it right and if not addressing it more is the wrong plan, feel free to let me know.

We had music therapy which she really enjoyed. It would seem that she does better when we let her dance opposed to playing instruments.

The best part of the day was when Child Life brought us beads of courage. I felt like we wouldn't have many on the checklist but it would appear we've had lots of things done! We did compact things a little. Doing one bead per week of hospital stay, one bead per month of injections, etc. Otherwise I thought it would get a little crazy. We will get to continue building it as things happen and as we go through our year of clinic visits and tests. What a beautiful reminder of the courage Selene showed as she endured the past year and the year to come!

Thank you for all of the love, prayers and things to keep her occupied! She is one happy little camper!