Tender

1 May

We knew from the moment that you were born, your journey was going to be a difficult one. 

First there was jaundice–persistent jaundice.  It lingered and lingered and lingered and no one knew why.  Ultrasounds were run, tests were administered, yet no one could explain why it wouldn’t clear up.  You were also a colicky, crabby mess. 

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After getting help from Dr. L, a chiropractor and kinesiologist, your skin cleared, the white in your eyes was *white* for the first time, and your spirits were happy…you finally stopped crying (and I think I did too—for a little while).

At seven months, you had an intense 4 hour surgery to repair your urinary tract defects.  While you healed ok from that surgery, it was the catalyst for a myriad of issues to surface.

You couldn’t sit without support, you certainly weren’t trying to crawl, you had such little energy.  “Failure to thrive” was the diagnosis from our family doc.  I hated hearing those words. 

We heard speculations like lukemia, MS, cancer, autoimmune disorders—every doctor had a different thought, but no one could pinpoint why or what or how to solve all of the strange blood work concerns, or why you had all of these strange “Jonah-isms.”

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Thankfully most of those initial hunches did not pan out.  The only diagnoses that we did get was iron deficiency anemia, which you still have 3 years later, and Hypotonia, or low muscle tone.  The other perplexing blood issues, where shrugged off with a, “He’ll probably outgrow these issues by the time he is three.”

Your Hypotonia diagnosis landed you in twice a week Physical Therapy—one through the pediatric re-hab at the hospital and one through Early On.  In everything related to motor development, you were significantly behind. 

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You hated PT sessions and gave your therapists hell!  But our therapists were persistent; eventually you caved and began to try.  We worked at home daily on strengthening exercises.  You were 14 months before you finally began to crawl and 17 before you began to walk. 

Somewhere in there, you had surgery on your feet to fix the horrible in-grown toenails that you were born with.  You also got fitted for custom-made foot braces (at $1200 a pop) and had to wear special orthotic shoes to fit them. These have been and continue to  straighten out your feet and allow the rest of your legs get a breather from the strain that is put on them on a regular basis. 

You’ve had CAT scans, EMGs, and ultrasounds; we’ve been to neurologists, urologists, hematologists, allergists, podiatrists, bleeding and blood disorder clinics, the list goes on and on. 

You’ve had vile upon vile of blood taken.  And the results have remained perplexing.

In fact, they still are.  The, “he’ll likely outgrow it” has come and gone.

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So, we are trying a new approach—an unconventional one.  We’re back to working with Dr. L.  We are modifying your diet, giving you tons of nutrition supplements to clean out and heal your gut.  It is hard.  It is expensive.  It is time consuming.  It is not easy. 

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Yet, you, my beautiful boy, are so worth it.  God has entrusted us with you.

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And, we are determined to do whatever it takes to get you healthy—for the long term.  You, my sweet boy, hold that tender spot in my heart—the one that aches because *I* can’t fix it for you.

But, I have faith that we are on the path to getting answers — for the first time. 

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6 Responses to “Tender”

  1. Kari May 1, 2012 at 10:59 pm #

    I L-O-V-E that boy (all of your kiddos). He’s amazing and I never knew how much so. Thank you friend.

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