2 Months: Holding on to God’s Promise

Kiira 2 monthsKiira 2 months

 

 

 

 

 

 

Kiira turned 2 months old on December 12th. We had a good week, where dressing changes overall went well and we haven’t seen any new blisters. One of the little blisters had a scab on it, and from our understanding of EB, it isn’t very often that the skin scabs. It tends to heal from the outside in. I mentioned that it was “weird” to Jason and he said, “Is it?” I guess not, considering the numerous prayers our sweet Kiira is receiving.

In addition, a ton of my family, including Jason and my older girls were sick, but once again, God had his hands on Kiira and me and we did not get sick. Of course, that meant I was caring for the family, but I was not alone. A sweet family brought us chicken noodle soup and I had other helpers for Kiira’s bandages. We have certainly felt the love!

Another God moment happened last night. We were at Bible Study and Kiira decided to spend the entire time screaming. I was in the other room with her listening to the Christmas stories in the other room when some of the moms came in and talked to me about colic, since Kiira’s screaming is somewhat normal on a nightly basis. I didn’t deal with this with the other girls, but they had with their kids, so I asked for tips. One of them was “white noise”. I put Kiira in her carseat and one of the moms put her phone next to Kiira with her white noise app blaring next to her. Kiira immediately fell asleep. While that alone was great, what was even better, was that when we arrived home, there sat an anonymous gift on our doorstep. We haven’t been opening these mysterious gifts since we wanted to save them for Christmas, but Jason decided to open one of them. Lo and behold, it was a white noise maker machine. Wow, just wow. If God can speak to whoever this mysterious gift giver is and tell them exactly what we need when we need it, He can heal Kiira.

I’ve received a couple messages from people recently who are so confident Kiira will receive this miraculous healing. I can’t explain how encouraging these signs from God are to me. Sure I still have some rough moments, but I have felt more uplifted this week than I have in the last 8 weeks. I have also stopped researching EB, as my mind needs a break. I am just trying to let go and let God, as hard as that may be.

Kiira’s 2-month checkup went well. Although her doctor doesn’t really know much about EB, he thinks she is looking great. She gained nearly 2 lbs in one month (11.1 lbs, 43%ile) and she grew 2″ since birth, so she is now 22.5″. I still see that she is eating well and since I wake her every 3 hours during the day, she is sleeping through at night. We had her audiology appointment today and once again they couldn’t get a good reading, so we’ll return at about 8-months old, but I really have no concerns about her hearing since she smiles at our voices and follows us around. Kiira is also starting to play with toys so it’s really fun seeing her bat at toys on her playmat or bouncer and know that we can now start to entertain her with toys. I also have not been great about giving Kiira baths for fear that I’ll hurt her. However, I finally got brave since she spit up all over herself and really needed one. So Kiira got her first full bath and loved it. We kept the bandages on and did bandage changes immediately following, but it actually went so well that I did it again today. I read how painful baths can be later on, so I’m glad she enjoys it for now and hope we can make it a fun “event” for her for as long as possible.

IMG_3428One thing I didn’t think about with dealing with Kiira was how much it would affect the rest of my family and probably even friends. I spent the last 2 months stuck in my own cloud of self-pity and constant worry. I struggled to see beyond what Kiira needed now and in the future, that I didn’t see how others were also impacted. In some ways it has brought us closer as we rally around Kiira, but in other ways it’s really tearing people up inside and we all try to deal with it in our own way. Writing Kiira’s story is my outlet, and so sometimes you’ll read very raw, difficult posts, because that is what I need to share at that time. Jason and I got our genetic tests back and it confirms Kiira’s results, as Jason and I both carry one of her mutations. This means some day our other girls will want to get tested to see if they are carriers and some of my other family may want to do the same so they know if they are at risk of passing it on. Again, this is another way it has an impact beyond just Kiira.

Kiira smileSometimes I see moms holding their babies so easily as I did with my other 2 and I feel jealous that I can’t do that with Kiira. Sometimes I still wonder why Kiira, why us? I feel like over the last 2 months I’ve been holding back with Kiira–not allowing myself to connect with her for fear I would lose her all too soon, but something changed over the past few days. I see her beautiful smile, hear her laugh and my heart swells with love for her. She tries to “talk” to us and I love our baby conversations. People look at her and tell me she is beautiful and no one can tell by looking that she has anything wrong with her. I try to cherish these compliments, because I fear that someday people will look at her all too differently.

At church one Sunday we sang the Jeremy Camp song, “There Will Be a Day” and it reminded me this life is temporary. We all have aches and pains and illnesses and face death all too often. I don’t want Kiira to suffer and to have EB anymore. I want God to perform a miracle on her. While I wait for that, I will try to remember these words:

God's Promise“I try to hold on to this world with everything I have
But I feel the weight of what it brings, and the hurt that tries to grab
The many trials that seem to never end, His word declares this truth
That we will enter in this rest with wonders anew

But I hold on to this hope and the promise that He brings
That there will be a place with no more suffering

There will be a day with no more tears
No more pain, and no more fears
There will be a day when the burdens of this place
Will be no more, we’ll see Jesus face to face
But until that day, we’ll hold on to you always”

The prayers we can use for this week:

  1. Healing for Kiira
  2. Peace and comfort for all of those who are impacted by Kiira’s diagnosis
  3. Our appointment at Stanford goes well on Friday and we can get some major questions answered and good resources for Kiira.
  4. Our family stays healthy through this cold/flu season
  5. The news piece done on Kiira will bring much needed awareness about EB so that EB research can find a cure for those who are suffering everyday due to EB.

Again, we want to express our sincerest gratitude to all of you who have been praying, sending supplies, bringing food, etc. We are truly humbled, but feel so blessed to have the support of so many of you. We cannot get through this time without your love and support, so thank you!


24 Responses to 2 Months: Holding on to God’s Promise

  1. Gary Kiser says:

    I just love the way you tell the story and express what others and God is providing. Every new day brings new hope, hold on to that and Kiira. Love Dad

  2. Tonie Bolin says:

    I agree with your dad…you telling your story with Kiira is amazing. We continue to pray for you guys…her little smile is absolutely beautiful. Thank you for sharing your story with us. I hope you don’t mind me sharing this on Facebook but I have friends across the country that are praying for you guys also.

  3. Leah says:

    I’m so glad you are sharing your story with Kiira – it has been so encouraging to me! The way God is working in and through you amazing! The noise machine! That’s just awesome! God is good! My family is praying for yours every day.

  4. Renee Hunter says:

    Kiira is so cute and I can tell in her pictures that she has gained weight and is growing. I love the butterfly blanket she is on, she looks so pretty laying against those bright colors. Thank you Kirsti for sharing and being so open about your struggles. It humbles me and encourages me at the same time. I have been praying for you and especially Kiira and have many friends here in Germany praying too. I watch for your updates since I am so far away. Much love to you all.

  5. Kiki says:

    OK now that the tears are wiped away, just lover her unconditionally as God loves us. You are right, each day is new & we just live each day one at a time–hard to remember for us humans šŸ™‚

  6. Vickie says:

    OK now that the tears are wiped away, just love her unconditionally as God loves us. You are right, each day is new & we just live each day one at a time–hard to remember for us humans. Prayers constantly for Kiira & your family. Love Auntie Kiki

  7. Kaija Kiser says:

    When you told me about the white noise machine, I got teary-eyed! God IS Amazing! Prayers do get answered! I am continuing to ask for complete healing for Kiira, no less. Just taking it one day at a time and praying for God’s Peace to fill us each day, especially those who have the hardest time with this!

    Kiira really is a joy and a beautiful smiley little girl! She even loves it when I sing to her and that is saying a lot! God’s Peace with us all as we continue to pray and care for her. She has two wonderful sisters, who love her so much too and I love seeing them with her now!

  8. Rita Blue says:

    You have a wonderful ability to draw us into your world and understand more of the struggles you face as parents as well as Kiira. I’m glad you have an avenue to tell the story. I pray daily God will provide answers for all who face the challenge of EB. I too love the song you posted but I heard one the other day and it is my theme song for sweet Kiira Faith. It’s by 4Him, ‘There Is Faith’. I have every confidence God will provide you with the strength and courage you need to face each day. The church here is lifting up Kiira in prayer daily. Can’t wait to meet our Kirra Faith.

  9. Kiira Kinkle, Eight days after my third birthday I became the victim of Polio. My parents were told by a world famous doctor my right leg would be useless for the rest of my life. Just recently I just past my 89 birthday. I have led a normal and productive life. All of my jobs were ones where I was on my feet most of the time. Doctors are there to help and cure. But there is one Greater Power that controls what happens. Keep your hopes up. Never give up. We all know there is a Greater Power above. Have faith in Him. My family did and I am still caring for myself. May GOD be With You.

  10. Kelly Francis says:

    I first want to congratulate you on your newest addition to your family. Blessings come in amazing ways we never would have thought of. I understand how you never had to deal with certain situations with you first children, then when something happens we quickly think of the most obvious answer. Crying= pain so colic was not even considered.
    With my third child he cried a lot. Nothing made him better. When he was crying he did not want to be held. It seemed to be never ending then as he got older by 1 it just stoped. My fourth child was the same at first. However I noticed something I think we all missed with my son. She was just starting to perspire just enough to notice if you were really paying attention. It was so subtle no one else noticed unless I pointed it out. So I undressed her to the point another baby might be cold. Not her she was very content. This technique was used every time she would begin to fuss and ninty percent of the time she was just too warm. We learn to swaddle our children because it makes them feel secure. However if by doing this they become too warm they just may cry, a lot. People thought I was Grady. I was very aware of my child and discovered something that could have helped my son as well.

  11. Sue Garrity says:

    plz Google Charlie Knuth of Darboy, Wisconsin He was successful treated with stem cell transplant at UMinnesota. Articles can be found in Wisconsin newspaper Appleton Post Crescent. He is now 7 years old, attends school. Connect with his parents. Awesome success story.

  12. mohammad says:

    Hello,
    Just saw the news clip online about your little princess. She is so beautiful.
    My name is Mohammad and I have two kids with RD EB. I live in your area and would love to get in touch with you. Please send me an email message at mohammad.sadiq@sbcglobal.net and I will send you my cell number. Hope to hear from you soon.
    Thanks!
    Mohammad

  13. Laura T says:

    Prayers for you and your baby!! She is so cute and precious. May God grant the desires of your heart!

  14. Toren says:

    This baby will be further blessed. We many times cannot determine what genetics might bring. Creeping away from Synthetics would do an infant good. Research a Scientist (Biochemist) : Dr. Robert Morse out of Florida. Naturopaths have a clearer understanding metabolic balance, and alkalinity.
    You might want to research DNA repair (sound resonances)
    Solfeggio Frequency 528 Hz
    Prof. Kevin Ahern Biochemistry kgahern@davincipress.com
    https://www.youtube.com/watch?v=55FkaLSKTRA

  15. Robin H says:

    My prayers to you and your family this Christmas season. My heart is just breaking right now. Beautiful child!!

  16. Oh, my heart! How I love this little girl – and all of you. The tears are flowing so fast and furiously as I write this. God can heal her, I know, but in the meantime, I pray for peace for your family and relief from pain for precious little Kira. I also pray for your other kids that they will somehow find a bit of wisdom at their young ages so that they can understand that Kira is different and needs extra loving care and attention.

    God will use this. He will. I just know it! We serve a mighty, everlasting, and faithful God. He will not leave you stranded. He brought Kira into this world for a marvelous purpose, and your faith will prove to be a remarkable example, a lamp to others’ paths that will lead them to Christ.

    You are taking wonderful care of your darling Kira. Look at her delightful smile. She knows she’s loved. No doubt.

    Bless you all. I’m going to go make a donation right now. My heart is so touched. I can’t even tell you.

    I love you all.

  17. Rhonda Dubielak says:

    Hey I’m from Alabama and I have a little girl at our church that also has EB and her name is Abby Jones from Hamilton. Her mother is a support person for our area and Abby is in 2nd grade now. Eb kids can bless your heart.

  18. Jesicca Kallas says:

    I just saw your story and wanted to reach out to you. I worked for an MLM company based in Utah, USA for 20 years, NU SKIN. They are a very generous company that love children and want to see them succeed. They have a Force for Good Foundation and created a relationship with the Epidermolysis Bullosa Medical Research Foundation. There were several conventions where Nu Skin hosted these special children to help bring more awareness. A portion of sales from one of their product lines goes to finding a cure! I have not been with the company for 7 years but, I really feel like you should reach out to them. Best wishes. You little one is yummy and beautiful!

  19. Bobbie O'Keith says:

    My niece has a close friend with a baby that has the same disease! She lives in Chicago and I’m sure would love to connect with you guys and share stories, treatments, etc… Please feel free to email me back and I will get you guys connected. I know this isn’t easy for her at all and she feels very alone. I will continue to pray for her and for your family as well. God is good and will provide all things needed for you. Stay encouraged that your story is getting out!!

    P.S. Am in Kansas City area and saw the story on our local news last night! Thank you for sharing!!! Kiira is adorable!!!

  20. Sewwandi says:

    I declare the finished work of Christ in Kiira’s life. I declare that Jesus has paid the price for her. I declare that there is healing in the name of Jesus. EB has to flee and it has to bow down in the mighty name of Jesus. John 10:10 says that “the thief comes only to steal and kill and destroy; But, Jesus came that Kiira may have life, and have it abundantly”. I declare that Kiira will live & that the resurrection power of Christ is alive in Kiira and Kiira is free
    In Jesus’ Name. Amen & Amen !!
    We will continue to pray. Speak life upon her day & night. Your words when empowered by the Holy Spirit can create miracles. We serve a God who raise the dead.
    Blessings from Sri Lanka …

  21. Lawrence ambriz says:

    I felt so sad when I read this story about kiira she touched my heart.She is so beautiful. I am going to pray for healing for her and invite others to pray for kiira.We do serve an awsome God who is able to heal any and all disease’s.”God bless this family.”

  22. Linda Neel says:

    Hello Kristi, I wanted to give you a word of hope here. I know what a hard time you are having and I know what your little girl is going through because I also have Epidermolysysa Bulossa I way born with it 63 years ago. And you are right the pain never goes away but you learn how to cope with it. Just always remember to keep the fingers and toe separated or they do web and grow down to the palms and bottom of your foot which the makes things very impossible. If you would like to ever contact me my name is Linda Neel I live in Las Vegas NV. raised in Utah. My e-mail is angel_84765@yahoo.com and I am also on facebook. Hope to hear back from you because if I could be of any help at all I would love to. Give that darling lillte girl of yours a kiss on the cheek from me. Linda

  23. Guillermo Alvarez says:

    I just read KiiraĀ“s story and itĀ“s heartbraking. I know that you are doing whatever it takes to help improve her condition. Check on a product named “Immunocal” that has helped thousands to recover their health from different diseases. This is not a medicine or vaccine; so doctors donĀ“t know about it. But doctors DO KNOW about GLUTATHIONE and what it does in the body. Please, please donĀ“t take everything from granted and do some research on this product. I am sure it will help Kiira. My best wishes to You.
    Guillermo Alvarez

  24. Vilija Salazar says:

    As quoted from my daughter Vilija 4 yrs old:

    “Merry Christmas baby-so you can get so you won’t get sick and don’t cry or be sick anymore and I need you to not be sick and Jesus lift her up. Lift her up Jesus.”(she also wanted me to put an arrow pointing up) and a heart!

Leave a Reply

Your email address will not be published. Required fields are marked *

Time limit is exhausted. Please reload the CAPTCHA.