Thursday, January 24, 2013

My Favorite Diagnosis Thus Far

I sit at my computer staring into a blank screen, not sure where to start tonight. The thoughts in my head race around like the NASCAR races and usually I can keep up, unlike tonight. So I will start it off as a story, brace yourselves this may be a long one!
This week we had our ACH (Arkansas Children's Hospital) appointment to recheck Liam's eyes--just like ever 3 to 4 months--but this time was different. Since Liam's initial appointment as a 3 month old infant we have not had his eyes dilated again to recheck the coloring and inner workings of the back of his eyes....it's an easy proceedure but one they do not tend to do except for once a year. The last visit at 3 months (when we got our "legally blind or worse" diagnosis) did not tell us much since he was not quite old enough yet for his eyes to be anywhere close to fully developed.
This visit however we expected to have more of an idea of how Liam truly sees.
The doctor had already complete her normal tests--testing Liam's sight with the same flashcards we see each visit, and checking for lazy/drifting eyes--when she brought in a student she wanted to let examine Liam. (We consented of course because Liam is a rare find!)
The student and she started talking explaining what Liam's diagnosis was and that with albinism there is a different visual spectrum. Basicly she explained what we already knew: in kids with albinism when you look at the back of their eye, if you see very little to no pigment this means they will be further on the "blind" side of the spectrum, and if they have little to some pigment that means their chances for more sight greatly improve.
She told the student, "do you see how Liam passed all of our tests and has great control over his eye movements? He saw that there was a puppy on the tv(turned on silent) without us telling him and it is near 15 feet away....so we would expect to see fair to good pigmenting in the back of his eyes."
Then she turned off the lights and possitioned herself to examine the back of Liam's dilated eyes with her special scope.
After several repositionings, "hmmm"s, and a few "that's very strange" comments she finally turned the scope over to her student and ran though all her chart notes on Liam.
The student pointed out before I could ask that "I don't see any coloring in his -----insert medical term I have already forgotten here---- is that correct?"
Our doctor turned to us very baffled and said, " there is NO pigment in the back of his eyes, none.. I can follow the nerves and everything, it completely lacks in pigment...."
WHATS THAT MEAN!!! We baggered.
***Warning: Tissues needed here***
I will never forget our sweet doctors words for all my life, and I will never stop repeating them in stories for years to come to anyone who will listen....
"By all medical definitions and by every examination of his eye that we have seen... Your son should be completely blind. They all indicate that he would see almost NOTHING, yet seeing him here in front of my eyes and watching him...I know he sees something! It's like looking at someone else's chart, the medical tests do not line up with this patient..and yet...."
We all stared at Liam, she in shock and us with pride... proud that though at times we doubted, God did not. He has had a plan all along for our sweet boy. One we never could have dreamed of.
Our doctor checked Liam over, and told us just this..."it cannot medically be explained, sometimes these things just happen, and they are so rare I wish I saw this more often.."
But we know the answer as his parents because we have been praying over his small eyes since day one. We truly believe her medical tests were right, that our sweet boy was once born blind and that by no science of theirs but by our Gods healing hands Liam's eyes have been healed.
No his eyes are not perfect, the nystagmus and photophobia along with a few other things will still cause him to be legally blind, but this is more than we ever could have hoped for...after all medically his sight could have been completely taken but it is not.
Our boy is a rare case of this I know, we have friends who have in ways believed harder and longer that their child or children with albinism would have more sight than they do but the do not....we never understand the reasons behind how God moves and why...but it's not for us to questions either. We know that we are blessed MAJORLY and we know that Liam and a lot of kids like him are destined to do great things, with or without their visual impairments!

Just a few weeks ago with some friends of ours from out of town, we sat around playing silly games of hypithetical questions like:

 "If you could have any movie super power what would it be?"
"If you could live on a movie set which would you choose?"

And one of the questions was, "What moment in biblical time would you want to be able to witness if you could only have one moment?"
My answer came fast: I would want to be there when Jesus healed the blind man and gave him back his sight.
This week I realized....I already have.

 
"And immediately he regained his sight and followed Jesus, praising...."

2 comments:

  1. What a wonderful, wonderful story! My son 5.5 month old also has OC and nystagmus. Our son was only 3 months when we went for our first checkup. He had "some" pigmentation then (although not nearly as much as his older brother). We have our follow up in a couple of weeks and are also praying for a good result.

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    1. Thank you! Prayers for you guys on your upcoming appointment! Hope it goes as well as ours did!

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