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Monthly Archives: December 2015
Day +182: Not everything with EB is fun, but somehow Kiira brings joy to most situations. Her newest thing is to help us with her gtube feedings as she pretends to put the syringe of water in to flush it and she thinks it’s just hilarious. I love her laugh!
After torturing her 45 minutes to get her blood, we had her labs drawn on Monday and shipped to Minnesota for testing. Please pray that the levels show increased donor cells so that she doesn’t need more chemo or even a boost and that it can start healing her skin inside and out.
Lately I’ve been questioning why we were led down the path of a BMT for it to just fail (possibly), but I was reminded that if we didn’t try it, I would always wonder if I should have. I have to remember at this point in time, a BMT is the best option for RDEB with no collagen production and I had to give Kiira the best option. Whatever may come from it is in God’s hands and I’m beyond thankful for the hope He provides, not just in this life, but for all eternity.
Day +178: I have a long overdue update, but I needed time to process Anton’s death and what it means for our future. I am still so sad that the world lost an incredible little boy, but realized I was going into a dark hole, where I was a year ago, and for my family, especially Kiira, I couldn’t do that again. From day one we were told to take one day at a time and I had to remind myself of that. I’m sure it won’t be the last time and there are days or moments when I struggle, but I try to be strong for Kiira, because she is strong.
So her update… Her hands and feet were in terrible shape over the past couple of weeks–maybe the worst ever. We (meaning Jason) had to cut the skin between the toes because the skin was fusing them together. We’ve had to change our wrapping technique again to include yet another layer of padding on her feet. However, we are still struggling with what to do with her hands to allow her fine motor skills and tactile perception, but protect them from the extensive scarring she has incurred in one short year of her life. I’m thankful the rest of her body has been in good shape though.
Kiira is eating more these days, but still taking gtube feedings during the day and at night until about 2am. We go to feeding therapy every week and the tips have been so valuable, so though it’s slow, we are seeing progress. Kiira loves soup, refried beans, avocado and kiwi.
This week we received our schedule for Minnesota. My mom, Kiira and I are going on January 10th for a week. She will get her blood test to check her chimerism (amount of donor cells) on December 28th. They’ll ship the blood to Minnesota for testing and I hope the results are available by January 11th so that they can make the final plan for her boost. Her current schedule has no plan for pretreatment of chemo or immunosuppressants, but I hope her blood test will help them make the best decision for that. They still plan to do the endoscopy, biopsy, and put in a temporary central line. Jason will stay home with the other 2 girls, juggling work and their schedules.
Kiira is so active and a little show off. We had some visitors who follow Kiira and she knows just how to get people to smile and laugh. She will stand for a few seconds without holding on to anything, but I think we are a long way off from her walking. She repeats sounds and words you say and she is in the phase of asking “What’s that?” about everything.
We had an amazing Christmas. It was wonderful to celebrate with our family, most of whom we haven’t seen since returning from Minnesota. We hosted Christmas Eve, but decided not to have Kiira attend our big family gathering on Christmas Day so Jason stayed with her. Not only did he miss out, but he did her bandages by himself–I told him that’s the most wonderful Christmas gift he could have given me. Honestly, I dread bandages every day, but I know it’s necessary for Kiira’s well-being.
Some have asked how you can pray for us:
- For Kiira’s donor cells to grow and create Collagen VII to make her skin stronger
- For Kiira to develop normally–to eat by mouth and not rely so much on the gtube, to learn to walk and do all the other things kids can do
- For Kiira’s big sisters to love her and be gentle and protect her always
- For us, as parents, to be patient, remain faithful and hopeful, and to be a light in all circumstances.
Thank you for your love and support. We hope your Christmas was filled with joy and hope for this coming year.
Day +171: We are overwhelmed, in a good way, by the love and support you want to show Kiira. I want to say a big thank you to The Butterfly Fund and Fifth Stocking Project they put on. People generously donated to our kids and Laurie delivered the gifts to us in person yesterday. It is so wonderful to meet the people behind these organizations who dedicate their lives to blessing others.
I know some of you asked how you can help with a medical table. You are amazing to jump in and offer to help–I was just trying to tell you about some of the things we need to keep Kiira safe and healthy and you jumped in with offers to help. Thank you! We are researching options and will let you know what we decide.
Thank you also for helping to keep me afloat on the hard days with your prayers and comments. It really does help! Today was better for me, and despite a couple falls and face injuries, Kiira had a good day too.
Day +169: The death of Anton has sent a flurry of thoughts through my mind and I am not even sure where to start. I don’t even feel like updating about Kiira but I know some of you have asked. She is fine–she is busy as usual and despite a blister that spans half of her foot and another across the back of her hand, she keeps moving and remains happy. We are just trying to keep the fingers and toes from fusing from these injuries. She yearns to be outside and cries at the front door to let her out. Her big outing, besides the days we had in the snow last week, is to get the mail with daddy when he gets home from work. Something so simple brings her so much joy.
I wish and I try to share her joy, but all 3 kids with EB who were in the hospital while Kiira was there, are now in the arms of Jesus. I’m losing hope. It’s a race against time because RDEB is a progressive condition. And the cure isn’t here and comes with so much red tape (genetic alteration isn’t an easy sell) and although it’s in the works, could take years to develop and approve.
I’ve been trying to push for another chimerism test before we go to Minnesota on Jan 10th because it can tell us if she dropped to 0 donor cells or hopefully it’s increasing on its own, as we’ve prayed for. Then maybe she wouldn’t need chemo and a boost in either case. She has done so well post-transplant and I don’t want to destroy more of her body unless we absolutely have to. Plus, I think it will help them make a more informed decision about what to do.
I also inquired about getting a medical exam table for Kiira. Currently we do her bandages on the floor in a beanbag chair so she can’t roll away, but even that can’t stop her anymore. We are far from sterile and between the germs, dog hair and the ant that fell in Kiira’s eye during tonight’s dressing change, it’s time we figure out our next plan, especially if she continues to get big wounds that can become infected. Unfortunately insurance doesn’t provide anything like that, but it’s on my to-do list, along with calling about setting up physical and occupational therapy and organizing Kiira’s bandages so I know what we have and can find them when needed.
There’s so much more I can say but please keep the Delgado family in your prayers as they mourn the death of their son, prepare for his memorial and their return to their home.
Thank you for your prayers and the love you show us, and especially Kiira.
Day +163: I finally got the dates to travel to Minnesota in January (brrrr!). Instead of 2 days, we’ll be there for 7 so Kiira can get a temporary central line put in to receive the prep and boost of donor cells. She will still get her biopsy and endoscopy as well. I hope they only have to put her under one time, but I don’t know the exact plan and they still haven’t decided in the pretreatment of either chemo or immunosuppression drugs.
Although the unknown of this trip can be frightening, I try not to think about it. We’ve been enjoying a few days in the snow and got dumped on last night so we enjoyed fresh powder for skiing and sled runs today. Even Kiira went in a sled and loved it. When we stopped, she said “Go! Go!” It’s been so fun spending time with family and letting all the cousins play together.
Please continue to pray for Anton and his family. There is nothing more they can do for him, but today he had a decent day, making more memories with his family. I kept waking last night thinking of him and his sweet smile, his singing, him waving hi to me from his room as I visited with Vanessa… It isn’t my child, but my heart hurts for him and his family and it’s hard not to think that Kiira could be at that point sooner than she should be. We will try to make the most of every day we have with her and whether God grants us a full life-time or a shortened one, we will praise Him for the beautiful gift she is.
Day +160: Kiira may not take a bottle herself, but she loves to feed her baby doll. She stays busy reading books, playing instruments, and standing anywhere she can, even when it means another bonk in the head. She may not say a lot of words but she knows how to say Elsa and Ariel–the important princesses in my kids’ lives.
Kiira had labs Monday and they weren’t as treacherous as last time. Her labs came back great, but the normal ANC and white blood cell counts make me wonder if she has any donor cells left. We should find out in about a month. Unfortunately her hands, fingers and tops of her feet have been blistering a lot. I wish there was more I could do to prevent it. Now she not only points out the owies, but she pushes on the blisters to figure out what they are. It’s funny she is just now exploring these things that have been a part of her for nearly 14 months. With her being more aware, we keep telling her that we are just trying to help her as we poke her with the needle so that hopefully she gets used to that too and doesn’t fear the necessary tool.
Overall we are good and taking a little trip to the snow with my brother’s family and my parents. We haven’t all been together in probably about a year, so it will be a wonderful outing and give us a chance to spend time together.
We are so thankful for a generous gift we received from a local mom’s group and their families. Also for Flip2It Sports for offering a safe place for Kiira to play and explore.
Please pray for Kiira and Anton and Raul and so many others who need God’s healing. Thank you all so much for your love and support!
Day +157: We had quite a few blisters to deal with today and now Kiira points them out on her fingers and knows the word “owie”. However, she gets over it quickly. I’ve had a cut on my finger for days and it bothers me constantly. It amazes me how she can just move on.
The past couple of days have been so fun. I took Kiira to the store in her covered stroller for the first time. She loved it and we even ran into one of her Facebook followers. The conversation that ensued was so uplifting and sweet. I love that she is so loved. I also had the opportunity to get a girls’ night out and then took the big sisters to a birthday party on a farm today. It was something I really needed since I’ve had so little time with friends since being back from Minnesota. I love Kiira, but sometimes I just need to experience life outside of her bubble-protected-world for awhile.
Overall she is doing great and we keep praying for the donor cells to grow, infections to stay away, and skin to be healed!
Day +153: After all of Kiira’s experience at the doctors’, she is trying her hand at playing doctor too. This morning I was thinking about how great she is doing. Her cold was so mild and seems to be gone already. Her skin is good, but I’m wondering if I am becoming more immune to her owies, because many people look at her with pity, but I know it could be so much worse! She went a few days with no blisters which is such a welcome change, but today I did pop 5. We had her feeding therapy yesterday and she ate more than I’ve ever seen, which is about 1 oz of yogurt and 1-2 Tb of avocado. It’s not much, but it’s progress. We don’t have therapy next week, but we will be going every week after that. We are still waiting on our plan for Minnesota in January. I have no idea if I’ll be there for 3 days or 3 weeks, but this time our family will be separated. Today it’s been 5 months since Kiira’s bone marrow transplant. 5 months that she has been in isolation, which means one of us has been too for the most part. I was hoping in a month she could taper off CSA, her immunosuppressant, so that she can finally experience life outside of the house and a doctors office, but with her counts, I don’t know. We are pretty much in a constant state of the unknown, but we are just taking things as they come.
If you missed it, check out the video I posted about Michael, a child with RDEB. If you’re looking for a place to donate to before the end of the year, the efforts of the EB Partnership Foundation are getting us closer to a cure for EB and they need funding for some critical research. The news just announced the first EB child will get localized gene editing, which is scientifically complicated, but so amazing! We are so close, but these things take years to develop and approve, so keep praying for a cure!