Day +184 / 6 Months Post Bone Marrow Transplant

994741_339225842914673_282815105583143357_nDay +184 / 6 Months: Happy New Year! 2015 was by far the craziest year for us. I don’t have a specific set of resolutions, but I’m sure Kiira will still take up much of time and thoughts and I’ll try to integrate improvements to my own overall well-being in between. We are hopeful and holding on to our faith that Kiira will continue to thrive and we will do our best to love on her and help her flourish.  

It’s been 6 months since Kiira’s Bone Marrow Transplant, a day that is kind of like a new birthday for her, a new chance at a life with less severe EB. It feels like a lifetime ago that we packed up our house and moved to Minnesota for the BMT and have since returned home. We had a great Christmas with family and fun New Year’s Eve with friends like old times, so we are slowly putting our lives back together. We face many unknowns about the success of her BMT, but we hope for many answers when we return to Minnesota in about a week. 

Kiira is getting 4 teeth at once and has been biting her fingers and been grumpier than usual as a result, but it will be fun to see her with more teeth. Today we gave her a full bath, bandage free, which are few and far between, but every time we do, I’m reminded how much she loves them at this age, so I should do it more often. Her feet are healing slowly but they look much better than last week and the extra padding is helping so far. 

We also got her biopsy images back today from early October, but I have no idea what they mean. The hope is that she is creating Collagen VII and they are producing anchoring fibrils, which is like the glue between our layers of skin, and necessary for her to stop blistering and peeling back skin with the slight friction. I imagine the images will be explained to me in Minnesota. 

I’m so unbelievably thankful for your prayers and support. I don’t know how I would have made it through the last year without them and I know we will continue to need them for a long time to come. So thank you and wishing you a very blessed 2016!


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