Day +119 Post Bone Marrow Transplant

12191405_322356221268302_7283336968110052872_nDay +119: I’ve been focusing on EB Awareness week because it’s so important to me to help everyone understand EB. It will be a part of our family for the rest of our lives. But tonight I want to give an update on Kiira.

Unfortunately one of Kiira’s labs came back with a low reading so tomorrow Kiira gets to have an IVIG infusion to replace IGG, an antibody. She had this once before in Minnesota, but she had a central line and a crib to sit in. Tomorrow they’ll try to keep an IV in without tape while a one-year-old active child sits in a stroller or on a stretcher for 4-8 hours. It should be interesting!

I wasn’t sure having a dog would be safe with Kiira’s lowered immune system, but apparently it’s fine, so our dog Lexi returned home over the weekend. Kiira loves Lexi and says “dog” or makes a barking sound while trying to pull her tail or her face. Lexi does not care for it, but hopefully they’ll learn to get along.

Kiira’s face is getting better. An unfortunate side effect of EB is seeing drops of blood and scabs all over the sheets. It’s from any number of wounds that she has, and oddly, something I’ve gotten used to. As the scabs fall off, I see fresh skin underneath, so I’m sure her face will look better soon.

We’ve also had the opportunity to return to church. Kiira stays home with my aunt and uncle, but we get to go as a family. While watching it online in Minnesota was fine, there’s something beautiful and renewing about worshipping together with other believers. We know we couldn’t have faced the circumstances with Kiira without God and our church, and the many churches around the nation, who are praying for us.

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