Day +317: Kiira is now 19 months old. She is talking so much, climbing up on couches and chairs, tries to jump, and feeds herself quite well. She has lost some weight, so we increased her calories but she is so active now that it’s no wonder. She thinks if she wears shoes, we will let her go outside. If only it was that easy… She will put on her sisters shoes but we still need to find shoes that will work over Kiira’s bandages.
So the call with Dr. Tolar… He answered all of our questions and to summarize: a 2nd BMT isn’t really any riskier than a first, there have been a couple successful 2nd BMT patients with EB, the cure we seek is too far off, and he would recommend a 2nd BMT. We have a lot of decisions to make, but if we proceed with a BMT, we could possibly get it done as soon as late July. Kiira is still healthy–not sickly, no infections, no signs of internal damage. Getting a BMT before these issues arise is important to us. Of course getting one still carries risks and so much sacrifice. We have to weigh all of these things into our decision, but our options are to do it and pray the benefits outweigh the risk, or don’t do it, and let EB progress as it does with RDEB.
Please pray for us as we figure out the best path for Kiira. We love our girl so much and we want what’s best for her.