Cupcake Time!

Ryker with Dr. Gutu - August 2016

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... 

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A Glimpse at Dr. Gutu's Office

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:

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