Day +244: Last week Kiira had her occupational therapy and childhood development evaluation. I think she will get services, but we have another upcoming appointment to discuss that plan. She is walking more every day though and isn’t behind cognitively at all (not that EB typically affects that).
We also heard the plan for Kiira’s transplant and it is just, “let’s wait.” They will retest her in mid-April and she will stay on immunosuppressants at least through that time to keep the donor cells from dropping even more. Then, they will have us visit Minnesota in July for her 1-year check up and discuss the plan. So we will continue to wait and see.
Meanwhile, Kiira’s skin is doing really well. Occasionally we will get a small or big blister, but the “a” is important. It’s only 1, not 10 or 50 in a day. And they heal so fast. Her mouth is even improving despite eating more foods. So although my first thought last week was that we went through a bone marrow transplant for nothing, my brother reminded me that even if it helps her through this year, a year where she is a crawling/walking/falling toddler, then maybe that’s enough because hopefully she will be more stable in the next years and therefore less prone to injury. It’s a comforting thought anyway.
Also bandages have been quicker and easier than ever. I often do them by myself now, which I never could have done the first year, and Kiira understands “wait” or “hold still”. That doesn’t mean she doesn’t have her uncooperative days, but those are fewer between.
She is talking up a storm and loves to make you laugh. She has entered the attachment phase though and only wants me or Jason, not the sitter. I’m so grateful she is ok with Jason too and I have those precious 5 months in Minnesota to thank for that too. They created a bond that wasn’t available with the other girls when they were babies.
After a tough week emotionally last week and this week of fighting a cold, I head to LA on Friday to spend a couple days with some college friends. I can’t wait for the break, even though I love my girls and will miss them. Good luck to Jason with all 3 girls!
Thank you for all of your prayers and words of encouragement last week. I ended up feeling a peace I can only attribute to God, so know that He is listening and pray that somehow, Kiira’s donor numbers will go up.