Day +178: I have a long overdue update, but I needed time to process Anton’s death and what it means for our future. I am still so sad that the world lost an incredible little boy, but realized I was going into a dark hole, where I was a year ago, and for my family, especially Kiira, I couldn’t do that again. From day one we were told to take one day at a time and I had to remind myself of that. I’m sure it won’t be the last time and there are days or moments when I struggle, but I try to be strong for Kiira, because she is strong.
So her update… Her hands and feet were in terrible shape over the past couple of weeks–maybe the worst ever. We (meaning Jason) had to cut the skin between the toes because the skin was fusing them together. We’ve had to change our wrapping technique again to include yet another layer of padding on her feet. However, we are still struggling with what to do with her hands to allow her fine motor skills and tactile perception, but protect them from the extensive scarring she has incurred in one short year of her life. I’m thankful the rest of her body has been in good shape though.
Kiira is eating more these days, but still taking gtube feedings during the day and at night until about 2am. We go to feeding therapy every week and the tips have been so valuable, so though it’s slow, we are seeing progress. Kiira loves soup, refried beans, avocado and kiwi.
This week we received our schedule for Minnesota. My mom, Kiira and I are going on January 10th for a week. She will get her blood test to check her chimerism (amount of donor cells) on December 28th. They’ll ship the blood to Minnesota for testing and I hope the results are available by January 11th so that they can make the final plan for her boost. Her current schedule has no plan for pretreatment of chemo or immunosuppressants, but I hope her blood test will help them make the best decision for that. They still plan to do the endoscopy, biopsy, and put in a temporary central line. Jason will stay home with the other 2 girls, juggling work and their schedules.
Kiira is so active and a little show off. We had some visitors who follow Kiira and she knows just how to get people to smile and laugh. She will stand for a few seconds without holding on to anything, but I think we are a long way off from her walking. She repeats sounds and words you say and she is in the phase of asking “What’s that?” about everything.
We had an amazing Christmas. It was wonderful to celebrate with our family, most of whom we haven’t seen since returning from Minnesota. We hosted Christmas Eve, but decided not to have Kiira attend our big family gathering on Christmas Day so Jason stayed with her. Not only did he miss out, but he did her bandages by himself–I told him that’s the most wonderful Christmas gift he could have given me. Honestly, I dread bandages every day, but I know it’s necessary for Kiira’s well-being.
Some have asked how you can pray for us:
- For Kiira’s donor cells to grow and create Collagen VII to make her skin stronger
- For Kiira to develop normally–to eat by mouth and not rely so much on the gtube, to learn to walk and do all the other things kids can do
- For Kiira’s big sisters to love her and be gentle and protect her always
- For us, as parents, to be patient, remain faithful and hopeful, and to be a light in all circumstances.
Thank you for your love and support. We hope your Christmas was filled with joy and hope for this coming year.
