Day +182: Not everything with EB is fun, but somehow Kiira brings joy to most situations. Her newest thing is to help us with her gtube feedings as she pretends to put the syringe of water in to flush it and she thinks it’s just hilarious. I love her laugh!
After torturing her 45 minutes to get her blood, we had her labs drawn on Monday and shipped to Minnesota for testing. Please pray that the levels show increased donor cells so that she doesn’t need more chemo or even a boost and that it can start healing her skin inside and out.
Lately I’ve been questioning why we were led down the path of a BMT for it to just fail (possibly), but I was reminded that if we didn’t try it, I would always wonder if I should have. I have to remember at this point in time, a BMT is the best option for RDEB with no collagen production and I had to give Kiira the best option. Whatever may come from it is in God’s hands and I’m beyond thankful for the hope He provides, not just in this life, but for all eternity.
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