Day +234: Kiira hasn’t done much more walking over the past few days, but we had another morning of fun and exercise at gymnastics on Thursday. We spent the day yesterday at Jason’s parents to celebrate grandpa’s birthday and Kiira loved sitting in their grass. I don’t think she has done it before–or at least she doesn’t recall, so she was very interested in it and got so mad when we had to go.
Today I took her on a long walk and she is so content in her stroller taking it all in. She loves getting outside anytime she can and crawls to the door and says “bye?” because she wants to go out. I’m really hoping those donor cells are growing so we can come off the immunosuppressants in April and she can be out without her rain cover. Though we venture out a little more, we are still very cautious about taking Kiira in crowds or with a lot of kids, especially with all the illnesses going around right now.
Later today, the girls gave me an early birthday present since they couldn’t hold back the surprise. It was a butterfly necklace with Kiira’s birthstone. EB identifies with a butterfly because the fragility of the skin is like the fragility of the wing, so they’ve become very symbolic to us.
Kiira also got a full bath today, which is still rare. She loves splashing in the water, but it’s so hard to completely unbandage her all at once. Her knee is healing amazingly fast. It has another small blister extended out from it, but we are amazed by the healing of the main wound, as well as her wrist. If the BMT helps even this much, so that we avoid infections and chronic wounds, I would say it’s worth it.
Tomorrow we get labs and our evaluation for physical and occupational therapy. Although Kiira is doing well, we notice some delays and her right foot is turned in significantly so we hope the tips they provide in therapy, will get her where she needs to be.
Thank you for your prayers and comments. The path isn’t always easy, but hearing your words of encouragement and knowing you’re praying, is soothing to our souls. So thank you.
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