Dealing with Kawasaki Disease, a mothers perspective

~Hi Friends~

(video below)

We have been home for a little over a week from the hospital with Grayson’s bout with Kawasaki Disease.  I believe the boys actually have a newfound appreciation for each other and I as a parent have more patience than I thought was in me.  I feel like we have been given a second chance and it feels darn good!

Grayson had his heart echo and blood work last week.  His echo was 100% NORMAL.  His heart went from being two points away from having irreversible damage to normal in 1 week.  Yes, wonderful doctors, treatments, and medicine helped but I have to say I am 100% sure that prayer had just a big of a role!  His blood work did not give us the results we were looking for but with time we firmly believe it will be back to where it should be.  He has started back up at school and we have only had one off day where I had to bring him home.

So all of this leaves me saying how do I even begin to say thank you? We received gifts of meals, food, laundry, cleaning, games, toys, letters, pictures, time, knowledge and so much more.  Prayers came from all over the world while gifts and cards came from YOU, yes YOU, our readers, my BLOG FRIENDS!  I feel completely incapable of truly explaining what all of this means to us.

So Thank You Thank You Thank You!  I will honor your gifts by pouring my heart and my soul into spreading awareness so we can save lives.  My first step in doing so is a video I put together.

You can watch it via Smile Box(first video) or YouTube (below)

Click to play this Smilebox slideshow
Create your own slideshow - Powered by Smilebox
Customize a slideshow design
Click to play this Smilebox slideshow

 

~Our hearts are overflowed with gratitude, THANK YOU~

Ray, Kristin, Jordan, Nathan and GRAYSON

On March 28th please watch Grey’s Anatomy!!!
Sarah Chalke will be starring as a  mother who brings her son to the hospital who has KD!!

Similar Posts

32 Comments

  1. Kristin, Praise God for his recovery and for the good results on the echo. Will continue to pray that his blood returns to normal as well. Such a beautiful, heartfelt video from a mom who has been down this very difficult road with her child. I have a friend in my Leader’s group for CBS who has a grandchild who has been there as well. So many unanswered questions, worries and fears for the future. Thank you for informing others. Awareness with any childhood illness is key!!

  2. Hallelujah!! I’m so glad to hear Grayson is doing so well. Beautiful job on the video. I watched it to the very end. Informative and touching ~ thanks.

  3. Kristin, you and your family are truly blessed and of course, Grayson most of all. This video is a great start to spread awareness and show what you’ve experienced with KD. So happy for your boy and hope that all is well from now on. 🙂 CHEERS!

  4. Dearest Kristin,

    Your video brought tears to my eyes and warmth to my heart–as much as you garnered strength from the love of your family and friends during these incredibly difficult weeks, we too appreciate so much the kindness you have always shown and the courage you and the boys are spreading through awareness now. Sincerely sending you and the family all of the very best in this world 🙂

  5. Kristin, what a beautiful way to share your story… I am just so happy to hear that his health has returned to near normal. I will watch Grey’s and be thinking of you and your beautiful son!

  6. Kristin, thank you for sharing this wonderful video of Grayson’s fight. My wish for you and your family is the gift of normal little boy days spent doing important little boy things and growing into young men.

  7. Kristen, I’m writing this through the tears, that video was so moving. You have a BEAUTIFUL family, I wish you and your family nothing but health & happiness.

  8. Kristin, the video was amazing. It brought tears to my eyes. I was so moved by it. I really feel for you and your family and the very rough couple of weeks you had with sweet Grayson in the hospital. You are such a courageous woman and your love for your family really shines through. I truly admire and respect you. I am so happy for Grayson and your family. Thank you for sharing this video and for helping to raise awareness. You and Ray will be such a support to other families going through this. Lots of love to you.

  9. As I watched this video tears were rolling. I am so happy that Grayson is doing well. Your boys are so beautiful! The video is so informative. Sometimes as mommies we have to trust our instincts. When my son became ill. I did the same thing. I brought him to the Er and was told he had viral meningitis. That was after a lumbar puncture. I knew better!! I kept bringing him to the doctor and Er. They kept telling me the same thing. Five weeks latter, after many visits and perseverance. They finally admitted him and did a brain biopsy and diagnosed him with brain cancer. While in Loma Linda Children’s Hospital for 11 months I never left his side. I made sure that I supervised everything they did. I will say that mistakes were made and some were avoided because of my constant presence. My son lost his battle. But, I know that I did everything I had to do to get him through those 11 months. You are so right when you said YOU MUST ADVOCATE! We know our child better then anyone.

    I will continue to keep Grayson in my prayers. I followed you on facebook and when he was sent home I was so happy. God is good and he will continue to heal your precious boy. Congrats Kristen…You did a great job.

    Cathy 🙂

  10. Hi Kristen,
    I just found out about your precious son and his battle with KD. What a beautiful answer to prayers. I will keep all of your lifted from our family. God is so faithful. Bless you and your sharing to make more communities aware of this illness. Wishing your families many wonderful days ahead filled with love. My best to you hugs Kate

  11. First off…. A big hug to you momma. Your video was so wonderful as tears RUN down my face. Your family is beautiful & your Grayson is a blessing. My prayers continue for Grayson & your family.

  12. My dear Kristin, you and your family and your brave boy have all my prayers and best wishes. You are a strong and completely amazing family!

    XO,
    Anne

  13. Kristin, I have been taking care of my dad and out of the loop for a while. I am so sorry to hear about Grayson’s illness and the terrible fear you and your family must have felt. Grayson is a brave child and I pray he continues to get stronger and to feel better. I loved the video!
    Hugs,
    Sherry

  14. Kristin ~ So happy for Greyson, you and your family!!!! It’s wonderful! You deserve Mom of the Year – you did exactly the right things and thank goodness Greyson responded well to the treatment. Cried through the entire video, beautifully done. Just so happy for you all! Life is good ~ Elizabeth

  15. I just happened on your blog because of the title. My son had KD when he was 4 and it was the scariest thing. He had all the classic symptoms of KD so was diagnosed by the 5th day and got IVIG. I have heard that if patient’s don’t present with the “classic symptoms” they take much longer to be diagnosed. So, any child who has prolonged fever that doesn’t respond to Advil, tylenol, etc should be considered for this disease. Medications did not bring this fever down!! Thanks for spreading awareness. God bless you.

  16. Thank you Kristin, for sharing this wonderful news of answered prayer. We are so very happy for you and yours. A perfect celebration in the Easter season. You are loved, brave girl.
    What a lovely God we serve, and by His stripes we are healed.
    Grayson and your family are so loved, even more so by Jesus.
    Blessings,
    Elise ox

  17. Beautiful slideshow! Your sons are gorgeous! I’m so, so happy to hear he’s doing better. He’s undoubtedly a little fighter! What an ordeal this must have been and how wonderful you must feel to have all this behind you.

    All the best to Grayson and to your whole family.

    Nicole

  18. Your video story so was so touching. Until your blog, I had never heard of Kawasaki disease. I am planning to watch Grey’s Anatomy this Thursday and I am curious how they will protray the disease. May Grayson continue to have healthy bloodwork & echos. God Bless.

  19. Aaawh, Kristin! I am so sorry you had to go through all that with your baby. A few years ago my nephew had KD, too (he was almost 2). It was so scary. There was hardly anything anybody could do to comfort him. He is great now, luckily. You are so right when you say to go with your maternal instinct. I don’t think there is anything stronger. You have a beautiful and now healthy family! So glad you are on this side now. xoxoxo Holly

  20. I’m so happy that your son is doing well. How terrifying it must have been for you. Thank you for reminding me to trust my insticts!

  21. Thank you Kristen for sharing your personal experience. It has made me more aware of KD. Your voice will make a difference…it already has. May God continue to watch over you and your family.

    Sincerely,
    Mary
    Mom of 3 Boys Too:)

  22. Kristin and your cute family– You have been in my thoughts since this all went down. I am forever thankful you have your sweet boy home with you… and that he is Healthy! 🙂 makes me smile ear to ear and my eyes fill up with tears. Please let me know if you need anything at all… just down the road… give me a call! 🙂 XO -Jen

Leave a Reply

Your email address will not be published.