The Unknown

Kiira has now been home with us for as long as she was in the NICU. Those days already feel like so long ago. Last Monday we met with Kiira’s dermatologist in Walnut Creek. She studied at Stanford, worked in their EB clinic, and still helps with the EB camps. We will meet with her 2-3x a year and go the Stanford Clinic at least once a year, starting ASAP if we can get in for Dec. At first the dr felt like Kiira has recessive dystrophic EB (RDEB), but told us she doesn’t like to make a clinical diagnosis and we need to wait for the genetic test. After she went back to read how recessive and dominant manifest in newborns, she recanted her statement, but it created a huge pit of fear in us. We were only scheduled for a 15 minute appointment, but we had a million questions and she wanted to take pictures of all the wounds, so we had to unwrap and wrap everything back up. 2 hours later, we were told we were doing great with wound care and to keep focused on that and nutrition. It was very hard at first to stay focused on those 2 areas when she told us how RDEB can affect nearly every body system and if she has it, we will see specialists such as an orthopedic surgeon for the inevitable webbing of hands and feet, Gastroenterologist to put a balloon catheter in her esophagus for when her esophagus becomes too scarred to allow the passage of food, optometrist for potential blindness, cardiologist, nephrologist, occupational therapist, physical therapist, nutritionist, and probably a few others I’m forgetting. Plus, she suggested that we should probably see a psychologist ourselves to help us through these life changes.

Of course, if it’s dominant, we are less likely to need any of these resources, but the seeds of doubt had been planted, so we turned to prayer which got us through the next couple of days.

Since we were seeing more blisters appear, we also went back to being more careful with handling Kiira so we carry her around on a synthetic sheepskin pad, turn her pants inside out so the seams don’t rub, and try to be gentle with her as possible. She was wearing cotton gowns, but one flexed her foot, knocked off her bandaged and caused a blood blister on her already bad heel. She screamed in pain on and off through the day, which tore at my heart. Yesterday I changed her feet bandages by myself since Jason returned to work and had to pop 2 more blisters on that heel, but it doesn’t seem to cause her pain like it did on Thursday. It’s 2 steps forward, one back, but we are still seeing great healing progress in other areas.

This past week was EB awareness week. It’s quite amazing how different people approach the condition. It seems like so many have a positive attitude and a lot of hope, but they have their bad days too. I also have my good and bad days. One day I can go without shedding a tear and another day, especially when Kiira seems to be in pain, I can’t stop the tears. Some days I wonder how I’ll ever be able to do this, and other days I feel like “I got this.” I read comments about not letting EB define us or Kiira, and I sincerely hope I get to that point, but I’m still in shock about it all and feel like it does define us for now. I truly want Kiira to grow up in a positive environment where people, including me, tell her “Yes, you can do that!” instead of “no, that will hurt you too much” and don’t look at her with pity, disgust, or as a burden. She will be aware of how everyone treats her and I just want her to know how loved she is and she is strong enough to accomplish anything. I tell this to myself as much as to anytime else, because it’s hard not to treat her differently when I have to carry her on a pillow, worry for her health constantly and even minor things like how or if we should keep travel plans we have throughout next year. Should EB stop us from the life we want to live and share with our kids? I’m guessing not when we can help it, but I’m sure there will be times when we don’t have a choice either.

So as we continue to face the unknown, keep us in your prayers. We are praying for total healing which might come best with a diagnosis of transient dominant DEB, since that one goes away with infancy–for reasons unknown the condition corrects itself. Or as Jason says, “reasons unknown” is God’s miracle.

4 Responses to The Unknown

  1. Ginger says:

    I love the idea that you are taking the time to let people know about this condition your family has had to endure.
    I hope you keep your head up and just always know there’s a reason for everything.
    She’s your shinning light in the dark

  2. Chelsea Kemp says:

    Not sure if you know… But I found this as I read another story almost like yours a few months ago on facebook.

    There is hope!

    In 2007, University fo Minnesota cancer researchers Dr. John Wagner and Dr. Jakub Tolar began clinical trials to transplant stem cells in bone marrow they believed could produce the missing protein. They’ve since done two dozen transplants, and their first patient is still alive.

    ‘You could actually see the skin repairing by just looking at the kid,’ Wagner told ABC News.

  3. Jamie Biller says:

    Kiira, I just got to see you story and I know what you are going through. Our son was also born with a rare skin disorder, EHK. I knew there was a possibility that it could happen because my husband was also born with it. We have a daughter that was born healthy and thought why not try one more time. He is doing great and is going to be 18 in January. We have had our share of infections over the years in which can be quiet scary. I pray all the time that a cure will be found so no child would have to endure this, but I also feel blessed because he has such a great heart and compassion for others. First is an organization that we have been in touch with since his birth. They are for all types of rare skin disorders and could help you out in any way. Not sure if you where told about this. They always have information on new treatments, creams, and stem cell research. Praying for you and your family.

  4. Pamela says:

    My daughter was born with EB Simplex. She was missing a lot of skin and ended up in ICU for the first 10 days of her life. It was a scary time for us, and we didn’t have all of the resources people have today. By the grace of God, our daughter made it through her childhood and is doing well today! She is now 19 years old and in her second year of college. Please feel free to email me or call me. I haven’t met any other children or people with EB, but sometimes sharing experiences helps us make it through each day. Kiira and your family are in my prayers. With God, all things are possible!! Take care and God bless you!!

Leave a Reply

Your email address will not be published.

Time limit is exhausted. Please reload the CAPTCHA.