Baby Steps

“Baby steps” can apply to many situations, both literally and figuratively. I remember when I was pregnant with Jaden, Andy and I would talk with much excitement about hearing the pitter-patter of little feet. Jaden is now four-and-half years old and unfortunately we’ve still yet to hear her first steps coming down our hallway.

Baby steps. But that’s just the literal definition.

After four years of anticipation, 1460 days of worry, more than two dozen medical specialists, and over 1000 tests, Jaden is finally taking some baby steps. For the last three weeks she has been taking supplements of COQ-10, a substance that has apparently influenced developmental progress for patients diagnosed with Complex 3 mitochondrial disorder. She has not been officially diagnosed with this disorder so the supplements are on a trial basis as prescribed by her latest neurologist at Cincinnati Children’s Hospital. She hasn’t stood up and walked yet, but we’ve certainly seen a few baby steps hopefully toward our own little miracle. So far we and her therapists have witnessed:

• Increased muscle tone
• Improved hand-eye coordination and fine motor skills
• More babbling

And best of all, mommy gets these beautiful extended engagements of eye-to-eye contact. Not that Jaden lacked that ability altogether before now, but it’s more intense and more deliberate as if she is thinking hard about something she really wants to say.

Baby steps.

Four years is a long time to go without answers. (We don’t have them all yet but we are so appreciative for the support we’ve had from our family and friends.) I am sure that it will not surprise you to learn that hurdles in our 21st-century medical system have posed many challenges in our quest. When thousands of tests continued to result in a big fat zero diagnosis, we didn’t even have answers as to what to do next. Privacy of medical records prevented us from matching Jaden with other children like her. Fortunately Google has just announced an online personal health records project they are piloting with the Cleveland Clinic. Patients will have their own secure online database where doctors and pharmacists can upload medical records. Then if a patient requires care from a different hospital, clinic or practice, he/she can grant access to the new doctor eliminating the existing requirement to transfer paper records or even duplicate tests unnecessarily. This project will not only save millions of trees and millions of dollars, but also allow for medical specialists affiliated with different facilities to collaborate on care.

What can you do? Watch for this project to expand beyond this pilot with the Cleveland Clinic and participate if you have the chance. Write Marissa Mayer, vice president of search products and user experience at Google, to show your support for this project. This is just a baby step toward fixing the problem. We still need to tackle the need for a consolidated national database of symptoms to facilitate pairing up patients who — like Jaden — have no diagnosis but have similar symptoms. HIPAA regulations currently make this unachievable. If we want to find ways to treat and cure new diseases and syndromes, we must be able to group people together who have similar challenges.

Baby steps…

-Melissa

Explore posts in the same categories: Disabilities, Links We Encourage You to Visit, Melissa's Blog, Parenting, hypotonia

Tags: baby steps, Cleveland Clinic, complex 3, complex III, complex three, COQ-10 COQ 10, Google, health records, HIPAA, medical records, mitochondrial disease, mitochondrial disorder

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