Life with Kiira has been getting more routine. She is sleeping well at night (if you can sleep through her baby grunts) once she falls asleep around 10pm. Most days the wrapping goes quickly, but there are still days when she is not in the mood. After we gave a few of her fingers new blisters after a rough day of wrapping, we decided that it’s better to not do it that day, or at least at that time, than to wrap and cause more injury. Kiira’s lip keeps getting blistered and then it will heal and blister again from the bottle. Hopefully it will toughen up enough that we won’t continue to see the blisters here. Kiira also endured 2 weeks of a rash mostly on her head, shoulders and trunk, but it has finally cleared up. I’m realizing how sensitive her skin is and how long it takes to heal with EB. Some of the rash bumps blistered, but even they’re gone! We are back to lubricating her skin multiple times a day to keep her skin clear. It’s amazing how dry her skin feels without the ointments on her face, which makes her itchy and then rashy. Just another EB side effect.
We are scheduled to go to the Stanford Clinic on December 19th. We will meet with several specialists, such as a dermatologist, physical and occupational therapists, and a nutritionist. We’re hoping to get a lot of questions answered and get more advice about Kiira’s future and possible treatments.
As I have mentioned, we are possibly seeking a bone marrow transplant for Kiira based on her genetic results (if she even qualifies). I know some have reservations about it because of the high risks it imposes. When I talked to Kiira’s dermatologist about it, she felt it was too risky, but told me that we don’t have to worry about her hands and feet fusing until she is about 2. Kiira wouldn’t need an esophageal dilation until she is about 5 and the earliest skin cancer appearances in EB patients is at about 8 years old. Hm, and I want my baby to go through all of those things, plus numerous infections, extensive scarring, nutritional issues, internal damage, physical developmental delay, daily pain and medication and more? While we continue to pray for miraculous healing for Kiira so that she wouldn’t have to go through a BMT or a life with EB, we know we also need to be proactive. We don’t even know if Kiira is a candidate for BMT, but with 2 mutations that result in no collagen VII production, we want to follow up on any possibility that can give Kiira a better quality of life.
Below is a slideshow of Kiira’s progress from birth, some reinjuries, and healing at 6 weeks.
Although I have many things to be sad and angry about, I also have so many to be thankful for. I am so thankful for our friends and family and people I don’t even know that have helped entertain our girls through babysitting or gifts, sent clothes and supplies for Kiira, and the many donations to Kiira’s fund for continued help with supplies and nursing care which we are getting in the upcoming weeks. Others have helped with setting up this website, our Facebook page, our Amazon wish list page, and the ability to provide tax-deductible donations, making special clothing, and so much more. We seriously couldn’t make it through this time without the support of so many of you. I am truly thankful for everyone who has shown us God’s love through giving of time, prayer and resources.