Day +153: After all of Kiira’s experience at the doctors’, she is trying her hand at playing doctor too. This morning I was thinking about how great she is doing. Her cold was so mild and seems to be gone already. Her skin is good, but I’m wondering if I am becoming more immune to her owies, because many people look at her with pity, but I know it could be so much worse! She went a few days with no blisters which is such a welcome change, but today I did pop 5. We had her feeding therapy yesterday and she ate more than I’ve ever seen, which is about 1 oz of yogurt and 1-2 Tb of avocado. It’s not much, but it’s progress. We don’t have therapy next week, but we will be going every week after that. We are still waiting on our plan for Minnesota in January. I have no idea if I’ll be there for 3 days or 3 weeks, but this time our family will be separated. Today it’s been 5 months since Kiira’s bone marrow transplant. 5 months that she has been in isolation, which means one of us has been too for the most part. I was hoping in a month she could taper off CSA, her immunosuppressant, so that she can finally experience life outside of the house and a doctors office, but with her counts, I don’t know. We are pretty much in a constant state of the unknown, but we are just taking things as they come.
If you missed it, check out the video I posted about Michael, a child with RDEB. If you’re looking for a place to donate to before the end of the year, the efforts of the EB Partnership Foundation are getting us closer to a cure for EB and they need funding for some critical research. The news just announced the first EB child will get localized gene editing, which is scientifically complicated, but so amazing! We are so close, but these things take years to develop and approve, so keep praying for a cure!