Author Archives: kirstik

  
Day +234: Kiira hasn’t done much more walking over the past few days, but we had another morning of fun and exercise at gymnastics on Thursday. We spent the day yesterday at Jason’s parents to celebrate grandpa’s birthday and Kiira loved sitting in their grass. I don’t think she has done it before–or at least she doesn’t recall, so she was very interested in it and got so mad when we had to go. 
Today I took her on a long walk and she is so content in her stroller taking it all in. She loves getting outside anytime she can and crawls to the door and says “bye?” because she wants to go out. I’m really hoping those donor cells are growing so we can come off the immunosuppressants in April and she can be out without her rain cover. Though we venture out a little more, we are still very cautious about taking Kiira in crowds or with a lot of kids, especially with all the illnesses going around right now. 
  Later today, the girls gave me an early birthday present since they couldn’t hold back the surprise. It was a butterfly necklace with Kiira’s birthstone. EB identifies with a butterfly because the fragility of the skin is like the fragility of the wing, so they’ve become very symbolic to us. 
  Kiira also got a full bath today, which is still rare. She loves splashing in the water, but it’s so hard to completely unbandage her all at once. Her knee is healing amazingly fast. It has another small blister extended out from it, but we are amazed by the healing of the main wound, as well as her wrist. If the BMT helps even this much, so that we avoid infections and chronic wounds, I would say it’s worth it. 
Tomorrow we get labs and our evaluation for physical and occupational therapy. Although Kiira is doing well, we notice some delays and her right foot is turned in significantly so we hope the tips they provide in therapy, will get her where she needs to be. 
  Thank you for your prayers and comments. The path isn’t always easy, but hearing your words of encouragement and knowing you’re praying, is soothing to our souls. So thank you.

Day +231: Kiira took 2 unassisted steps yesterday and 4 today. She was so proud of herself, that you can see her determination to try again and again in this video. With EB, we hear of many kids who aren’t walking for years, so to make it this far at 16 months, we are so proud of her too!
Kiira Walking Video

Kiira suffers from Recessive Dystrophic Epidermolysis Bullosa and this article, written by another mom with a child with EB, helps sum up the condition, its daily requirements and toll it can take on our children and families.  

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Day +229: Today, Kiira had a good day. We got labs done nearly painlessly to test for Kiira’s donor cell levels. Pray they are higher than ever and stay up! 
Then she got to play with her aunt Kiki while I worked and later had a tear-free bandage change full of laughs and kisses. Love this girl so much! 
Thank you so much for your continued prayers. We know God is faithful and able to do more than we can imagine.

Day +228: The painful side of EB.
  

But nothing a balloon couldn’t fix when we told her we were all done relieving the blisters and cleaning the wounds. Our sweet Kiira…

  
Day +227: Happy Valentine’s Day! We got to spend the beautiful day with our 3 loves. The girls and I went to church, and then we had a picnic lunch at the park, came home for naps, and spent the evening at my parents, enjoying their hot tub. Plus, Jason knows I’m sentimental and he got me a book made with all of Kiira’s posts from the last year. It’s amazing to see how far she has come and how many blessings we have received since she was born. My heart is full of love tonight! ❤️
Kiira’s knee is still a bit raw, but looks better than yesterday. And for my parents sake, I am in no way blaming them for her injury yesterday. The bandages slide down and her knee was unprotected. It’s frustrating, but it happens on her feet all the time and is probably one of our biggest issues. 
After Colton’s passing last night (he didn’t have EB, but was next door to Kiira in the BMT floor), we are reminded of how fragile this process can be, and how truly fortunate we were that Kiira is doing so well. I try to push back the survivor’s guilt that peeks through and just be thankful. By the way, there are others doing very well too and others in the midst of their BMTs for EB, and I know I haven’t spent any time talking about them, but because of the positive stories, we felt a bone marrow transplant was successful enough to take the risk for Kiira. We try to enjoy every moment with her, while holding onto the hope we have in Him.

  
Day +226: We have had some great days with Kiira’s skin. We had no blisters at all yesterday and we want to celebrate those moments, but this world makes me think I’m ” jinxing” it by celebrating and being thankful, because it means the next day will be bad (I know, not very positive). 
Similarly, today we had a family outing. We started with a walk and it’s not even 70 degrees, but Kiira got so sweaty that it made her face rashy and itchy. (I don’t know what I’ll do when it’s 110 this summer!) Then we took the older girls to lunch and to see Disney on Ice while my parents watched Kiira. We had such a wonderful time, not thinking of any of our cares and enjoying one of the rare times the 4 of us go out together. When we returned, we found Kiira’s knee bandages covered in blood, with the largest, deepest knee wound to date, because her bandages slid down. I read about other kids who knees never heal and the bone is showing and I pray my child never gets there, but it’s the beast of RDEB. She cried “mommy” and some gibberish as we washed and rebandaged it, and I wanted to cry, but within a minute, she was smiling and being her goofy self. EB sucks, and I want to get down and think about all the things it’s taken from us, but I can’t, because Kiira doesn’t. And we are home, with our baby girl and get to go on outings, and have many good days, and not everyone has that opportunity. We have so much to be thankful for and we have to keep fighting for all those who have lost their battles.

  
Day +224: Kiira’s Epstein-Barr Virus results came back negative again, so that’s great news! Now we just need her engraftment numbers to come back high, but we don’t get those drawn until Tuesday and will take awhile to hear the results. 
Today Kiira got to play at our gymnastics place. The owner of Flip2It Sports, has been so sweet and opened up her gym for Kiira to play when it’s empty. She loved it!! 
I want to ask for special prayers for a baby named Colton (https://www.facebook.com/prayingforcolton/). He was next door to Kiira on the BMT floor. This entire time (over 8 months), he has been in the hospital and had a second BMT for a different condition, infantile osteoporosis (fragile bones), and is now on life support. Their journey has been far from easy and they need a miracle today!

  
Day +222: Yesterday we went in for labs and had good luck getting the blood draw in one poke, which was so much better than last week. We are waiting on Epstein-Barr Virus results, but all other labs have come back normal. Later this week or next week, we will also get Kiira’s 30 day engraftment results done to see how the boost of donor cells helped her numbers. We pray that they’ve increased so that we won’t be looking at a second transplant. 
We got a baby gate for the stairs from a friend (thank you!) and Kiira is upset she can’t climb the stairs, but I feel far more comfortable with having it there. Especially because she took a spill last night on the stairs, but she only suffered a very minor scratch. I couldn’t believe it! Maybe this boost is giving her stronger skin already. 
Kiira has been so loving lately. She gives us so many hugs and kisses and started saying “Love you”. When I think back to a year ago and trying to imagine what life would be like now, I envisioned the worst and to protect myself, I was shut down. But, we have this amazing, loving little girl that melted my heart, reminding us she can overcome more than imaginable. And that is why we need to take it one day at a time and not worry about what the future brings.

  
Day +218: I have been meaning to update all week, but we have been so busy getting ready for Miia’s 6th birthday, which is today, work, and other things. Kiira is doing fine. We tried to get labs on Monday, but the blood just wouldn’t come out despite 3 attempts. They accidentally tore some of the skin off her arm with a cotton ball (yes, a cotton ball is enough to tear her skin) where they usually poke, so I asked if we could give it a week to heal before they poke her again. The other arm just doesn’t give blood even when they get the vein. So we hope the Epstein Barr Virus is still negative, but we won’t know until later next week. 
  We made the appointment for Kiira’s evaluation on the 22nd to set her up with therapy services, but the gym our kids go to also offered for Kiira to play when no kids are present and everything is sprayed down. The kind of play she would have there would help strengthen her legs and core, which she needs to be able to stand and walk on her own. I’m excited to try it out and so thankful for their offer. 
We went over a week without a single finger blister, which is huge. But then yesterday it was like an outbreak of blisters–whatever she touched, gave her one and this morning I had to pop one on her knee and underarm as well. Sometimes I feel like the bone marrow transplant is helping her skin, but other times it doesn’t. It’s been 7 months and I know we may not see full results for a year or more, and it doesn’t help that her donor cells have decreased so significantly, but we are waiting patiently, because we have faith that it will help.