Day +84: I want to clarify our recent posts. Epstein Barr Virus (EBV) came up as a result of Kiira’s lowered immune system due to the chemo and radiation. It’s a common virus but very serious in immunocompromised people. We are so thankful that it only took one treatment and aside from a little nausea, Kiira didn’t seem impacted by the virus or treatment. We hope it continues to stay away because it can cause her to lose her transplant.
Kiira still has Recessive Dystrophic Epidermolysis Bullosa (EB). The bone marrow transplant will never take that away as it’s a part of her DNA. The hope is that the donor cells will help her make Collagen VII so that her skin will be tougher–less blistering and faster healing. However the full benefits of the transplant can take years. It does seem that Kiira’s skin is getting a bit tougher. Crawling takes its toll because of so much friction, but we see other little changes–we tried a normal onsie on her today. As a newborn, the seams were enough to cause blisters, but with these normal clothes, she had no issues. On the other hand, she fell on the hardwood and tore the skin on her forehead a few days ago and today fell against my leg and I had soft leggings on, but it was enough to tear the skin off her cheek. Also now when she gets hurt or a blister, she cries, which she didn’t usually do until recently. So she still very much has EB, and we hope her skin will get stronger as time goes on.
There is no way I could put her in a normal day care or class at church or have just anyone care for her. She still requires delicate handling, but we’ve come so far from the days where we would only touch her with aquaphor on our hands or carry her around on a pillow. And I’m so thankful for that.
It was such a joy to see Kiira in the video that The Butterfly Fund put together (see previous post). This organization and so many people have showed us an outpouring of love that we could never repay. Thank you!
I am fighting a bit of a cold and I think the girls already had it (even Kiira had a bit of a runny nose), but please pray that it doesn’t affect her any further.
Thank you and God bless you for following Kiira’s story!