Day +346: It’s been awhile, but I’ve had a couple crazy weeks of travel. Jason held down the fort with the help of my family for several days while I was gone and now I’m visiting my aunt and uncle for a week with the kids, but Jason couldn’t come since he needs to save vacation time for our return visit to Minnesota. We got to attend a church here and meet a lot of people who have been praying for Kiira. It’s so encouraging knowing so many people are lifting her up to God.
So, at long last, we have a firm decision and dates for another bone marrow transplant. We are driving out to Minneapolis the first week of July and Kiira’s BMT is scheduled for August 2nd. I’ll only have a little over 2 weeks at home to get things ready, but this time we aren’t moving our whole family and most of our stuff out there–we will find a furnished place.
On Friday, we had the girls tested to see if they are carriers of EB. It doesn’t mean they have EB if they’re carriers, but they would probably want to know when they get ready for family planning (which I know is way in the future).
A week from tomorrow we are getting Kiira’s first echocardiogram. Cardiomyopathy is more common in RDEB than the general population, so they want a baseline test and they’ll test her heart regularly going forward. I have no reason to believe Kiira has any signs of it yet, but it can happen as early as the first year of life. Just another side effect of EB…
So for now we are going to enjoy this week at the beach with family–making memories with all my girls and trying not to let EB or the upcoming BMT steal this time from us too.