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.