Day +103: Kiira’s 100 day engraftment came in. She is 100% CD3 and 92% CD33/66 (types of T cells). She is also CMV (virus) negative again. All of this is great news!
Last night we picked up Jason from the airport and Kiira was thrilled to see her daddy. She wanted him to read to her and do everything for her. I’m glad she fell back into routine with him so easily. Aside from a couple day visit in October, it’s been over 3 months since he and the girls went home and it’s wonderful to be together again.
Today we had our final appointment in the clinic, a full 9 hours, and we had a mini reunion with EB families in the area. People from around the world come to Mn for treatment and we all have an incredible bond because of EB. I wish Kiira could’ve been down playing with the other girls, but she was getting MSC cells from Miia (2 of 3 sets), inhaled antibiotic, and a flu shot. We said our goodbyes to the doctors who have been an enormous help to us over the last 2 years. We will see them again in January, but this has been our home and Kiira gets so excited to see them. When we told her we weren’t going to the hospital anymore she said, “awwww” in a tone of disappointment. The day wouldn’t have been complete without more music therapy too.
I wasn’t sure about going through a BMT a second time, and how it helps her skin is still to be determined, but now it’s coming to an end and I’m confident we made the right decision. I’m thankful for the experience and God’s provision for our family as we navigated through this challenge. We head west on Wednesday to rejoin our family and friends early next week!
