Day +169: The death of Anton has sent a flurry of thoughts through my mind and I am not even sure where to start. I don’t even feel like updating about Kiira but I know some of you have asked. She is fine–she is busy as usual and despite a blister that spans half of her foot and another across the back of her hand, she keeps moving and remains happy. We are just trying to keep the fingers and toes from fusing from these injuries. She yearns to be outside and cries at the front door to let her out. Her big outing, besides the days we had in the snow last week, is to get the mail with daddy when he gets home from work. Something so simple brings her so much joy.
I wish and I try to share her joy, but all 3 kids with EB who were in the hospital while Kiira was there, are now in the arms of Jesus. I’m losing hope. It’s a race against time because RDEB is a progressive condition. And the cure isn’t here and comes with so much red tape (genetic alteration isn’t an easy sell) and although it’s in the works, could take years to develop and approve.
I’ve been trying to push for another chimerism test before we go to Minnesota on Jan 10th because it can tell us if she dropped to 0 donor cells or hopefully it’s increasing on its own, as we’ve prayed for. Then maybe she wouldn’t need chemo and a boost in either case. She has done so well post-transplant and I don’t want to destroy more of her body unless we absolutely have to. Plus, I think it will help them make a more informed decision about what to do.
I also inquired about getting a medical exam table for Kiira. Currently we do her bandages on the floor in a beanbag chair so she can’t roll away, but even that can’t stop her anymore. We are far from sterile and between the germs, dog hair and the ant that fell in Kiira’s eye during tonight’s dressing change, it’s time we figure out our next plan, especially if she continues to get big wounds that can become infected. Unfortunately insurance doesn’t provide anything like that, but it’s on my to-do list, along with calling about setting up physical and occupational therapy and organizing Kiira’s bandages so I know what we have and can find them when needed.
There’s so much more I can say but please keep the Delgado family in your prayers as they mourn the death of their son, prepare for his memorial and their return to their home.
Thank you for your prayers and the love you show us, and especially Kiira.
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