Day +208 Post Bone Marrow Transplant 

  Today was a good day! Labs went great–I love the two women who treat Kiira like a fragile china doll, with such tender care as they draw her blood. She only cried for a few seconds and they got all the blood they needed in one poke. Now we anxiously await the results of the Epstein-Barr Virus (EBV). We hope the numbers have continued to go down on their own. 

Kiira also had feeding therapy, which went well too. She has made some small improvements, but we are so happy that the trip to Minnesota didn’t set her back. 

We had dinner with my brother and sister-in-law and the 6 kids had an opportunity to play together. It is really fun to watch them grow and interact, especially now that Kiira and my nephew are getting to the age where they can play more. 

Tonight I checked out Kiira’s re-injured foot and it looked so much better. For once, the blister didn’t refill and grow. We are trying yet another new wrapping technique and hope it prevents future injuries. I often get the question where we learn to do wound care. While the EB community provides tips to each other, so much of it is trial and error. We adjust as needed according to how and where she gets injured. Her room is full of various types of bandaging products and we use at least 8 different things to protect her. We may try different products or cut them differently or add more, all in attempt to heal faster with less scarring and protect her from future wounds. 

As you can see, Kiira’s hair is growing and so crazy–it won’t lay flat, but it fits her spunky personality. She continues to amaze me and I’m so thankful for days like today, where we can just thank God for a break, for a breather before we face another day. 

Please pray that the EBV is going away on its own and that the donor cells are coming back up. Thank you!!


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