Follow on Facebook
- $0 / $20,000
EB Kids to follow:
Monthly Archives: June 2016
Day +364: Tomorrow marks one year since Kiira’s first bone marrow transplant. As we enter this process again, we invite you all to pray for her and for us. We leave July 6th and hope to be home by Thanksgiving.
Things we pray for:
- Safe travels to Minneapolis
- Kiira’s health and skin are stable to minimize the risks during chemo and radiation–she has lost significant weight over the last 3 months and increasing skin issues.
- The BMT is successful–it improves Kiira’s quality of life long-term with no damaging side effects.
- That Jason and I can successfully manage splitting our family apart for 100+ days
- That Kiira’s siblings can be patient with us and compassionate toward Kiira, in a way that may lead to self-sacrifice to put her needs before their own.
- That research leads to a cure for EB soon!
Thank you for joining us on this journey! We can’t do it without the love and support of all of you!
Day +360: We only have 10 days left until we head out to Mn again, but the 100+ degree weather and extra movement from Kiira is paying its toll and we can’t wait to get the BMT process started–to give us hope of something, anything. Wounds don’t even fully heal before they blister again, spreading more each time. Kiira’s itchy, dry skin can’t be soothed with creams and bandages stick to dry patches, pulling more skin off. Despite all these things, the rare moments we let Kiira outside, she is so full of joy and awe. I wish I faced things with such wonder and contentment.
We got the genetic results back on Kiira’s sisters–they each carry the EB gene–one carries mine, the other carries Jason’s. Since we don’t show any manifestations of EB with only one recessive gene, they won’t either, but they’ll need to consider this mutation with family planning. As the geneticist reminded us, we all carry numerous mutations; we just happen to know about this one and can test for it. If our girls happen to find a spouse who also carries it, a one-in-a-million chance, then they can pass along RDEB. But hopefully by then, the cure we seek will be found.
This is our last full week at home, and I adore my family, friends and church and want to spend as much time with them as possible. I have 10 more days to soak in memories to get me through 100 days alone.
Day +354: We have just over 2 weeks before we drive out to Mn. We are still waiting on the girls’ EB carrier results, donor decisions, starting packing and housing in MN, but I know it will all work out. I’m not as stressed about getting out there as last year.
We had a great time visiting family on the coast last week. The weather was perfectly cool for Kiira. All signs of rash went away and she was able to play outside comfortably. It was fun to see her at the beach and playing tag on the grass as she yells, “Got ya!” Now we are home in 100 degree weather and she cries because we won’t let her go out. The heat makes her too sweaty and her skin breaks down faster. Thank you to my aunt and uncle for spoiling my kids and putting up with us for the week!
Today we had Kiira’s echocardiogram. We don’t know any results yet, but hope all comes back fine.
Thank you for your continued prayers! This sweet girl needs to keep her health, skin in good condition, and be as strong as possible as she goes in for a second round of chemo and radiation in a month.
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.
Today she had her last OT appointment at home until we return after transplant. Our goals will be to keep Kiira’s muscles and speech in use as she goes through the BMT, but as of know she is right on track. Today she learned to say the words bell pepper and broccoli (so cute in her little voice), and I’d hate to cause delays in that department, but according to our OT, speech is the first to go in long hospital stays. I guess I’ll just have a lot of talking to do with her!
We are still waiting on final dates and donor info, but I’m hoping to have it figured out this week. We had a bout of infection in her wrist and foot. It seems better after the pool, so hopefully we’ll keep any bit of that away as we enter the BMT process. Please keep praying for us! Thank you so much for being such a blessing to our family!