EB Struggles

This week I started back to work. Although I only work part-time from home, it’s a great break from everything else on my plate. I’ve spent the last few days trying to get a hold of EDD to see about my disability benefits from my pregnancy since I still haven’t received them, but of course you can’t get through by phone, but since it’s hard for me to visit their office in person, I sent them a good, old-fashioned letter. I got a call from Medi-Cal Waiver office telling me I need to apply for SSI for Kiira and it’s best if I go in person. I asked her when I’m supposed to find time to do that, but the woman reminded me that this is a life-long disability and once it’s done and Kiira has SSI, we’ll never have to go again. I feel like it’s a futile exercise though since it’s based on our income and she won’t qualify for benefits. However, before we can be approved for the Medi-Cal waiver, we have to exhaust every other avenue first. She also reminded me to get our genetic testing done (we should have the results this week) so that we don’t bring another EB child into this world since it’s so awful. Thank you–I know it’s awful and even if I had wanted more than 3 kids, trust me, I wouldn’t have another one. Our CA Children’s Services app is also on hold until we get approval from the Medi-Cal waiver. It’s simply amazing how much paperwork, phone calls, and visits are needed in order to get my child much-needed supplies to care for her life-long disability. If a child is born with a condition, it should just be automatic care through either the insurance or the government–both things we’ve paid into for years and never used ourselves or for our other girls!! Through donations, we have supplies and funding to last us several months, which is so amazing, but Kiira will likely need bandaging for years.

Then I got a call from Dr. Tolar’s office (the doctor conducting the bone marrow transplants in Minneapolis) and we have to get approval from Kaiser first, which I assumed, but since our dermatologist isn’t on board with a BMT, I’m afraid we’re going to run into some issues. We just hope she sees it as an opportunity to consult with everyone we can so that when we are ready to move with a treatment for Kiira, we can.

While struggling to get all of this paperwork done, we’re also struggling with Kiira’s skin. My last post showed her improved rash, but the next day it returned and it looks like it will be an on-going issue. Dr. Tolar wrote me an email today complimenting our bandaging and management of infections (since she hasn’t had one since she was in the NICU), but it makes me want to cry, or maybe laugh, because in the last 2 days I see how holding her hand too tight during bandages gives her blood blisters, clipping her nails makes them fall off and tear the skin, the wrong outfit gives her a blister on her chest, and picking her up by her armpits makes multiple blisters there too. Her lip keeps bleeding from her popped blister and her tongue is covered in loose white skin. If these things that we are doing causes her so much injury, what is going to happen when she starts moving and causing her own injuries? Oh never mind–I have seen the pictures. I know what is coming.

Many offer to watch Kiira or help us with her so that I can get a break, but I don’t trust anyone with her, because I don’t even trust myself with her! Sure I can have some nurse come in here and watch Kiira a few days a week, but she’s not familiar with EB or how careful you have to be in handling a child with skin like hers. I know I couldn’t blame someone if they did injure her since I do it on a nearly daily basis, but it would be so hard not to. I feel torn between over-protecting her and wanting to run away and do anything else with my time besides watching my baby deteriorate as time goes on, as I know I have not even come close to seeing the worst on Kiira.

I told Jason the other day that it’s funny how we’ve prayed since she was born that this would go away and when it didn’t, we prayed that it would be the most mild case, and when it wasn’t, we prayed it wouldn’t be the most severe, and I guess it’s not, because some EB kids don’t even make it 7 weeks, but it did end up being RDEB with no collagen VII, which is pretty much one of the worst EB diagnoses possible. My constant prayer is “God, please heal her!”, as I can’t muster up any other words.

People keep ask how I’m doing–I could lie and say that I’m great and everything is under control and I’m happy that God gave Kiira her condition. Or you can keep reading my brutal honesty about I feel for now. I feel like an empty shell, just going through the motions. Time to feed Kiira, time to change her diaper, time to feed the other kids and get them dressed, time to pump, time to work, time to do laundry and dishes and wash the bottles for the millionth time, time to do Kiira’s dressing changes, time for Kiira’s 2-hour evening cry fest and at long last, time for bed–my favorite part of the day. One of the kids is crying, or being funny, but I feel nothing. I don’t feel empathy for them and I don’t feel like laughing with them. I can’t get what I’ve lost or what I have coming in our future off my mind. Sometimes I let myself cry, but usually I just try to feel nothing so I can get through the day. Some days I can keep it together and I start treating Kiira like a “normal” baby and then my actions cause her injury and I get so angry that I have to carry her around as little as possible and when I do, it’s on her pillow. Nursing my other daughters was such a bonding time to me and instead I feel burdened by pumping and feeding Kiira with a bottle because it’s hurting her and if I can’t even cuddle her, I can’t imagine trying to nurse her. People want to help but I don’t want the help, not because I don’t appreciate it, but because I don’t want to have to need it! Such silly things even cross my mind like the fact that she couldn’t wear a pretty dress and headband for Thanksgiving, she probably won’t be able to eat chips when we go out for Mexican food, and she may not even be able to color like her sisters do since her hands will be either be wrapped or too damaged to hold a crayon.

In the hospital I kept crying out “Why?” and I felt this whisper from God saying, “Because I love you,” but I still can’t wrap my mind around how God’s love for us can also burden our hearts so heavily or how is love for Kiira can still allow her to live a life with EB. I don’t know that I’ll ever understand that whisper to me. If I do, I will surely create an updated post! Supposedly we never get more than we can handle, but I am definitely feeling that theory put to the test. After bible study on Monday I told Jason that I hear stories of how parents are up with their children all night because they’re itching or in so much pain that they can’t sleep. I said, “God can’t give that to me too, because I cannot function without sleep.” Ha! That night Kiira was up nearly all night crying, which is a first for her (remember my last post started with how well she was sleeping), and I got about 2 hours of sleep. I guess God was telling me that even without sleep I can survive another day. I won’t make that mistake again… So the next time you ask how I’m doing, I’m probably lying if I tell you I’m fine, but I just don’t want to get into it. The best thing you can do is tell me you’re praying for Kiira, because I truly believe God is listening.

Even with all of these terrible, raw, empty feelings, I’m reminded once again of Kiira’s middle name, “Faith”. I know I have to keep having faith. I know God has a plan in all of this. I still don’t understand why He allows children to be burdened with conditions and diseases to make a point to the rest of us, and I don’t know why He chose us. But I have to keep having faith that a cure is coming and until then, God will help us get through this one day at a time…


23 Responses to EB Struggles

  1. Nancy McPherson says:

    I’m praying for Kiira and you and Jason. I love your family and I do want to help.

    • ASHOK says:

      Thinking of you and your baby…hope she will get better soon. Stay strong and be well.
      I am sending my little help to the below address:

      Mailing a check directly to Elk Grove Church of Christ
      (Designation: Baby Kiira):

      Elk Grove Church of Christ
      Attn: Kiira Kinkle
      PO Box 1588
      Elk Grove, CA 95759

      I will ask my friends as well to help on this..

  2. Gary Kiser says:

    Oh Kulta, your Dad loves you and my heart is heavy for your situation.

  3. angela s says:

    I know Tonie Bolin in Pampa, TX and she shared your story. My heart breaks for the struggles you are adjusting to. I will pray for your family and that you can have the strength you need each moment to make it through the next.

  4. Kaija Kiser says:

    Praying and crying for you as well. God please heal Kiira!! Love you all so much!

  5. renee says:

    I’m praying for you and J and Kiira. I’m so sorry that you are going through this right now but it will get better. I went through a really depressed phase when I was pregnant with Kaiya, even considered medication but I didn’t want to do anything that would affect her. It really takes time to adjust not only to her condition, but also to life with three kids now. Do some things for yourself so that you can feel better and come back refreshed. J can watch the kids. And I know this is easier said than done but DON’T worry about the future. You will make yourself sick. Give all your worries to God and let Him worry about it. You are one of the sweetest, strongest people that I know and it pains me to see you go through this. Continually praying for you guys every day. Love you!

  6. Katie says:

    I love you, Kirst. Praying for you all.

  7. Leah says:

    Your honesty is so very encouraging to me! And it definitely helps us all to see better what you and Jason are facing- that will help guide all our prayers! Thank you for sharing your journey and know that I am praying every day for healing and strength, and not just for Kiira. Healing and strength for you too, my friend.

  8. Rita Blue says:

    i can’t stop thinking about your days and nights and how each day brings new challenges and fears. But I am so grateful for a God who loves us and provides the courage and strength for each day and night. Kiira you and your Mommy and Daddy are in my prayers each day. I so long to meet you and hold you on your pillow. Love Aunt Rita

  9. Robert kiser says:

    Ineta and I pray that God holds you and Kiira in his loving arms ands gives you and Jason strength to care for this precious child. Hold on tight to his love.

  10. Molly says:

    Thank you for sharing how you are really doing, Kirsti, so that we know how to pray for you, and how to pray for Kiira. I will be praying that the paperwork/bureaucracy goes better, and that you encounter helpful people to guide the process. And I am praying for your burdened heart–that the Lord will show you both small and large joys to carry you through these hard days. You are a wonderful mommy to three precious girls.

  11. Michelle says:

    I sent you a fb message. Probably went to your other folder. If you need help navigating insurance (including med cal waiver) or just to talk… feel free to message me any time. Our kiddos have very different illnesses but some of the struggle is the same and if I can help in anyway…. I will. <3. Kiira is a gorgeous little girl!

  12. Linn Robison says:

    Kiira is in my prayers – prayers for wholeness and healing.

  13. Emily says:

    I found your blog after the KCRA story. You are an amazing mother and your children are so fortunate to have you! I am impressed by your dedication to pumping milk for your baby, on top of the other daily tasks you manage! I work with mothers who have breastfeeding challenges and I know your efforts are making a big difference for Kiira and for you. Exclusive pumping is a huge job!

  14. kelly Joyce says:

    hello, I’m 47 years old and back then it was unheard of.. I have two forms of E.B. I have had serious infections from blistering, I get them inside also, my intestines, bladder and one kidney remains from years of blisters , but let me tell you as she gets older, it will get better, I still blister, and the blisters take over my hands and feet.. I wish that there was internet back then to research this disease. a couple of things I would like to tell you, if she wears shoes when shes older, make sure they are good quality, all leather , breathable no rubbing on the back of heal, socks I wear are wool air wisk, my socks run around 20 bucks a pair but help with not blistering, summer time I wear those instead of shoes…I can tell you from experience, that there is no pain when the blister is formed and growing, the pain comes when they are popped , the redder it is the worse it is….if my skin is pinched it will form a small blister and then grow… heat and humidity makes it worse so if you can keep her cool.. and to this day, if I have a piece of clothing on that itches , it gets thrown away. I was told I couldn’t carry any children, I have two beautiful sons now grown, I had challenges though but had help with chasing toddlers around as I couldn’t keep up sometimes, Kiira will thrive, there is also a summer camp for children with EB in the future. I wished I had went growing up, to be with other children who have it would have help mentally…I can tell you I am living a happy life, I got great support….and so will she!! she is beautiful, she will have good days and bad days, but the good days out weigh the bad ones, by her smile, I can tell she has a great mom.. if you ever have any questions feel free to email me, kellyatjcb@yahoo.com.

  15. kelly Joyce says:

    and as I read your post, I would like to suggest you ask for help, my mom had the same feelings, and over time she had resentment towards me, it was my fault I was born with this, it was my fault the family had no money because all the extra money went to bandages and medical bills, it was my fault she had no life. to this day we don’t have a relationship because she blames me… reach out and get help to help with the other children if you dont trust anyone with her… educate a care giver to help with her…. I held back on saying these things to you but changed my mind because it can be overwhelming to do it all on your own…

  16. Melanie says:

    We just learned about your family on Facebook. We also live in the Northern California area and are praying for your sweet daughter, Kiira! I heard of EB when my son was in the NICU after he was born four months ago. He had an extremely rare (undiagnosed) condition where he was born without arms and had a severely small, recessed jaw (among other birth defects). The jaw was so small that he had an insufficient airway and the doctors had to put in a tracheostomy during his delivery and a feeding tube later on. With the difficulties we have faced in caring for an armless trach/feeding tube baby, I cannot even imagine the difficulty of your situation. I have often asked God all of the same questions you have, felt exhausted to the point where I am not even myself anymore, gotten angry about having to do exclusive pumping, and wondered about what the future holds for my son. I am praying fiercely for Kiira and your family. We recently went through the entire Medi-Cal waiver process to get in-home nursing care, which you definitely need. Once you get Medi-Cal, most of the medical supplies and care that Kaiser doesn’t cover will be covered by Medi-Cal or CCS. I highly recommend applying for the Medi-Cal nursing care waiver through Alta Regional Center. If I can answer any questions for you, please contact me via email and let me know.

  17. Kari says:

    Your sweet baby girl is such a love! <3 I adopted a child with Down syndrome and met a mom with a son with EB in a special needs group. She said breastfeeding and babywearing were the two things that saved her. She wrapped him in a very soft wrap against her so he could get the comfort and cuddles but no friction. He had a witching hour every night that he cried, and it really helped. The breastmilk also did wonders for his skin. Merry Christmas to your family!

  18. tim says:

    Hello, is Kira still able to receive breast-milk from her biological mother? This may be key! Begin by looking at and analyzing the mother’s nutritional homeostasis .. [and naturally little Kira’s ingestion of related sources] paying particular attention to these critical areas:
    no tap water; use only distilled water; no oral contraceptives; enough iodine, sulphur, calcium, good fats, limited salt, fried and-or rancid type fats’ limited use of sodas which are terrible for the body.
    Start here for the kind of help which may be a cause of little Kira’s needs. Best to you all

  19. ASHOK says:

    I love your family and want to help…
    mailing a check directly to Elk Grove Church of Christ
    (Designation: Baby Kiira):

    Elk Grove Church of Christ
    Attn: Kiira Kinkle
    PO Box 1588
    Elk Grove, CA 95759

  20. Sara says:

    First I want to tell you what a beautiful baby Kiira is. I’m sure your other two girls are too. 🙂 My name is Sara. I live in Citrus Heights. I’m married with 3 little boys. Reading your comments really moved me to want to share with you the only thing that has ever helped me get through rough times. I’m not trying to say that I understand what your going through. My worst pain was of a different nature when 5 members of my family were murdered. Despite all the anger and hurt I went through, I did find something that helped. Something that truly helped. It is my hope for the future and belief that God wants to fix the worlds problems. That he didn’t cause them and gives us a solid hope. This faith doesn’t come from religious leaders telling me “God needed another angel on heaven” or that in some twisted way it was His purpose for this to happen. My faith comes from a study of the scriptures. Like Revelation 12:12 that says, “On this account be glad, you heavens and you who reside in them! Woe for the earth and for the sea, because the Devil has come down to you, having great anger, knowing that he has a short period of time.” Satan is confined to the earth. His time is short. He’s angry. He does not want peace. He’s going down fighting. But, he has only a “short period of time”.

    James 1:13 says, “When under trial, let no one say: “I am being tried by God.” For with evil things Godcannot be tried, nor does he himself try anyone.” We are made in Gods image which in part means we reflect his sense of justice. Could you ever think of a just reason to cause a baby to have such a debilitating disease as EB? Then why would God? This is not His purpose.

    The Bible shows that starting with the first human pair, Adam and Eve, Satan tempted them with the fruit by telling them they would become like God if they ate it. He essentially told them they didn’t need God and questioned his right to rule. If God had killed them all and started over what would that have proven to all the angels looking on? Instead he immediately set a plan in motion to settle the issue of his sovereignty once and for all- he allowed Satan an opportunity to prove himself. This world is under the control of Satan. He’s failing miserably. Bible prophecy shows that we are in the last days, the threshold of a “new” world here- on earth. Gods original purpose was for mankind to fill the earth and live forever in paradise-like conditions. His plan has not changed. It just took a detour. In detail the Bible describes how this would take place but the end result will be as if all of this never happened.

    Revelation 21:3,4 says, “And he will wipe out every tear from their eyes, and death will be no more, neither will mourning nor outcry nor pain be anymore. The former things have passed away.”

    Psalms 37:10,11 says, “Just a little while longer, and the wicked will be no more; You will look at where they were, And they will not be there. 11 But the meek will possess the earth, And they will find exquisite delight in the abundance of peace.”

    I’m so sorry for what you are going through. There are ao many more verses I’d like to share with you but I don’t want to fill your entire page. 🙂 I would be so happy to share more with you though if you are interested at all please feel free to email me. I will keep your family in my prayers.


  21. Tim says:

    My daughter, Madysen, was born December 26th, 1998 with the exact disorder. When she was born, she was missing 80% of her skin. Her feet were the worst. I could see the “meat” and veins on the top of her feet with just a clear membrane covering them. After living in the hospital learning how to take care of her, the doctors told us to take her home and spend time with her because she wouldn’t live to be 1 year old. I was in the Marines at the time, so the military hospitals provided all supplies. They referred to Madysen as their $10,000 a month baby. My wife went online and, with God’s help and guidance, found a specialist. The military allowed me to transfer units to receive help from the particular doctor. Within 6 months, or so, Madysen’s skin grew back and she was only wearing bandages on her feet. For a little girl who was not going to live to be one year old, she plays soccer, basketball, softball, color-guard, and is trying out to be the kicker for her high school football team. God has truly blessed us and we have 2 more younger daughters with no medical issues. The EB clinics and blogs did nothing for us except confirm that she had it and give us ways to keep her comfortable. The specialist we saw gave us treatments and ways to improve her skin, and it worked. My wife and I would love to be in contact with you. Maybe we can help. We recognize the bandages and the pain youre going through. We had to hold Madysen in “egg crate” foam just to be able to have any closeness with her. Please contact us. My email is above. Our hearts go out to you and you will be in our prayers.

  22. Cyndie says:

    I can only hope that all of the help those have offered who either have children with or have suffered a life with E.B. have helped you to continue to survive and have given you hope and help for your child. It gives me a renewed faith in human kind that they have reached out to help you with REAL life solutions. My heart felt hope and prayers are with you all.

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