![]() A difficult diagnosis can be difficult to process. There are many "what if" questions, and far too many "unknowns." Some days, particularly early on, can be very dark and sad, and it can feel like you're on an unending rollercoaster ride! I remember early on with Ryker, it seemed like every doctor's appointment we attended led to bad news, or further testing of some sort. "For goodness sake!" I would think to myself, "Can't the boy catch a break?" I just wanted someone, anyone, to tell me "it would be okay." Enter: Dr. Stephen Gutu, Ryker's awesome neurologist at Blank Children's Hospital in Des Moines. Our pediatrician (another amazing doctor) referred us to Dr. Gutu early on, and he and Ryker developed a special bond right away! If you're familiar with Blank Children's Hospital or spend any time there, then you may see Dr. Gutu walking the halls in his famous pair of wooden clogs. Yes, adult male sized wooden clogs. Apparently the kids love them! Now I digress, back to my story... ![]() Soon after we received the diagnosis of Joubert Syndrome, we had a follow up appointment with Dr. Gutu to check in on Ryker's development, discuss Joubert Syndrome, and discuss a treatment plan. I had done my research, I knew what pitfalls to look out for, I knew what delays to expect, and I knew where the risks were. Dr. Gutu conducted his evaluation, looked at Ryker, looked back at us, and smiled. "I see a very healthy, happy little boy here!" He said. I started with my litany of questions for Dr. Gutu, and he graciously answered them. But then, he took us to his office and showed us a large poster hanging there: "In the Beginning, GOD," the poster reads. Dr. Gutu went on to say, "God's got this, and he works miracles every day. So, take joy in his health and happiness, and when he accomplishes a milestone, no matter HOW big or small, you celebrate. If he sits for 1 second, you get a cupcake! If he tracks an object, go out to dinner. If he stands, have a party! Celebrate everything." That, folks, is a prescription we can handle. That appointment with Dr. Gutu was almost a year ago, and ever since then we have celebrated every moment with Ryker. Sometimes the celebration is small, sometimes it's big, but no matter what, it is a celebration, and I urge you all to follow Dr. Gutu's advice and celebrate too! Life is often surrounded by negativity -- just look at the state of our world today! But if we each take time to find joy in the small moments, and find a celebration wherever we can, then I believe the world will be a better place! As for us, now, well, it's CUPCAKE TIME in our household! Here are a few of our reasons to celebrate this week: 1. Graduation from Occupational Therapy every other week to once a month! 2. Isolating his finger for pointing! 3. And THIS amazing feat:
19 Comments
Angela Thomas
1/22/2017 02:56:27 pm
This is so great! Love him! ❤ He has worked so hard.
Reply
Rebekah Noe
1/22/2017 03:06:11 pm
Kasey, that is incredible! Congratulations, Ryker!
Reply
Kendra Janssen
1/22/2017 03:06:18 pm
This brought joy tears! He is so full of life, love and joy. 💙
Reply
Staci Spragg
1/22/2017 03:22:37 pm
Oh. I love the smile and after his accomplishment he raises his hands for some momma love!💜💜
Reply
Chris Brandhorst
1/22/2017 03:57:24 pm
Love it, way to go!!
Reply
Sheri
1/22/2017 04:14:34 pm
Sure an inspiration. So happy! Thank so much for continuing to share you story and journey. Blessings!
Reply
Erica
1/22/2017 05:11:23 pm
Such an awe inspiring little guy, genuine love portrayed in words well written.❤️
Reply
Vickie Swanson
1/22/2017 05:44:25 pm
He is so lucky to have you as a parent who celebrates his moments and I have no doubt he will bless your life immeasurably! God has blessed you!
Reply
Marty DenHartog
1/22/2017 05:50:01 pm
Yeah Ryker! and Yeah mommy for your inspiring blog!
Reply
Jeri
1/22/2017 06:16:32 pm
What an amazing video!!! Yeah, Ryker!!!
Reply
Barb
1/22/2017 07:36:49 pm
What a BEAUTIFUL sight to see! Congratulations!!!
Reply
Rhonda
1/22/2017 08:03:16 pm
He is really going for the gold! Great job, Ryker!
Reply
Barb Rice
1/22/2017 08:47:16 pm
How precious, Kasey!! God chose you to be Ryker's mommy and he is a lucky little boy to be surrounded by such am amazing family!! Continue celebrating life!! Such joy in that video!!
Reply
Jeff
1/22/2017 09:16:52 pm
You go Speed Racer. Love our races.
Reply
Carol Lippincott
1/23/2017 05:54:28 am
Kasey that is wonderful! He looks so happy.
Reply
Linda Payne
1/23/2017 08:24:47 am
Yay Ryker <3 God knew exactly what he was doing when He entrusted him to you and Adam. Pass the cupcakes 😉
Reply
Skyla Mann
1/23/2017 12:27:13 pm
Sitting in a coffee shop.... bawling my eyes out. Thanks, Kacey. Thanks, Ryker! I needed that emotional release, apparently. This post brings me so much joy. You are ALL freaking AMAZING. Seriously. You bring so much goodness into this world and that drives out darkness. I love and adore each of you. And Ryker's smile is pretty much the cutest thing ever. <3
Reply
Pam Combs
1/23/2017 05:18:34 pm
Yay Ryker!! Inspiring story and good reminder to Celebrate--you guys are awesome :)
Reply
Sandy Hagemeier
3/13/2017 08:24:11 pm
Jack and I are amazed at his progress! In teacher language you and Adam receive a gold STAR! ⭐️
Reply
Leave a Reply. |
AuthorHi, I'm Kasey! Here sharing my heart and my joy, and encouraging others to live With Faith and Gratitude♥ Don't Miss a Post!Archives
December 2019
Categories
All
|