Day +100

What has been accomplished in the last 100 days is nothing short of miraculous and the process to get here has been nothing short of terrifying. I think that tumultuous is a word that fairly describes my relationship with the SCCA.. I wanted nothing to do with this organization or the people who worked within it when all of this began, I was scared, angry and really in denial of what needed to happen. Today, gratitude was certainly the message I wanted to communicate. The team that has spent the most time with us outpatient (and some inpatient) were all there today, all commenting on how good Georgia looks and how her wiggles and smiles will be missed. I am so grateful to especially these four people who really care about Georgia and have been thoughtful about her individualized care. The hope is that we will not need to be seen at the SCCA until January for our one year post transplant follow up.
Throughout this process I think I have been seen as far more assertive than I see myself, but in the end I think they all know I am just a mother who loves her daughter. Rare diagnosis and disease aside, I think Georgia has made a mark at the SCCA.

Me, Dr. Carpenter, Nurse Dawn, P.A. Joan & Georgia

Nurse Suni, Dr. Carpenter, Nurse Dawn, P.A. Joan & Georgia