Wednesday, September 5, 2012

Into The Word Wednesdays - v. 10

When I think about Peyton lately, words that come to mind are mystery, complicated, unique, special, and so on.  She turned 6 last May, but to date she has never been diagnosed with a syndrome or disorder.  We have known since birth that whatever she has is exceptionally rare.  Not just that, but she may even have more than one rare disorder!  That certainly has not made the process of diagnosis an easy one for her geneticists.

Here's the thing.  Having a diagnosis very likely wouldn't change a thing in terms of what we are doing for Peyton.  She lives with blindness after cataracts were remove at two weeks of age, severe hearing loss, severe developmental delay, severe sleep apnea, chronic respiratory illness, and many other conditions.  We treat each condition individually {where possible}, and having a name of a disorder likely wouldn't change that.

As time passed, I realized more and more than none of what Peyton is going through is in our hands.  In fact, it never was.  No matter what issues Peyton has or will develop, there is only One who has all the answers to the great medical mystery.  It is our human nature to want to try to find answers.  We have actively been seeking answers regarding our child for over 6 years.  We've really never even come close to having an answer.  I keep thinking that it will be an amazing day when all is revealed.  I have to trust, though, that the answers I seek might not be revealed on this side of eternity.

And then we received a ray of hope...
We have been working with a geneticist from Children's Hospital Boston since we went up a couple weeks ago.  He had recommended some very specific tests.  Between Peyton's pediatrician and geneticist here in Charleston, we were able to coordinate these tests.  Some of the results will take a few months or so to come in, but a couple were just testing for specific levels in the blood.  We got the results of those yesterday and I immediately forwarded them on to Boston.

I received an email last night from Boston from the doctor - he asked me to call him.  I did.

For the first time in years, there is a possibility for a diagnosis.  I will preface this by saying that Peyton has NOT been diagnosed.  I will also say that it may not even be the entire answer.  That said, the doctor has been doing research and he found a possibility based on Peyton's congenital cataracts, hearing loss, neurodegeneration as well as these two test results {the levels being tested were significantly low}.

The down side?  There is nowhere in the United States where Peyton can be tested for this disorder.  It's being researched in Germany.  The research is based on a very small number of cases.  Worldwide, there are only 10 known cases.  THAT is how rare a disorder Peyton could have.  Again, she hasn't been diagnosed.  I'm just saying that whatever she has is probably that rare.  The doctor is going to be making contact with the researchers to see if they will be willing to test her.

I am reminded of Jesus as the Great Physician.  

Matthew 9:12-13 {NIV}
12 On hearing this, Jesus said, "It s not the healthy who need a doctor, but the sick. 13 But go and learn what this means: 'I desire mercy, not sacrifice.'  For I have not come to call the righteous, but sinners."

Right now, we are being called to trust in Him.  We feel like our contact with this doctor has been made possible through Him.  I don't know whether our "earthly" physician will uncover the mystery that is Peyton, but we can certainly pray over this and trust in God that whatever the outcome, we will still trust in Him as Peyton's perfect healer.


I would LOVE it if you linked up with a post about what God is showing you in the Word, or in your life. Please also stop by and see what God has been teaching my beautiful co-hosts this week: 

Becky at Tales of Beauty for Ashes
Kelly at The Houtz House Party
Falen at Upward Not Inward 
Kelly at Exceptionalistic

Into The Word Wednesdays


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