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Waid's Diagnosis

After an exam under anesthesia, Waid finally has a diagnosis, and, actually, it  is what we thought all along....Peter's Anomaly.  It is very rare; 1 in 5 million.

Because of CDC regulations and his positive TB test, we were treated like leppers (every so politely).  After (at least) 12 surgeries at Children's, this was a 1st for us.  Waid did get the TB quantiferon gold test today.....so we should have more definate news about that next week.

Back to his eyes....they will never get better, we can only slow down the process of them getting worse.  He does have glaucoma.  Normal pressure is 10-20, his is 40 in the right and upper 30's in the left.  My best, easiest explanation is that the pressure would eventually blow out the optic nerve.  It could hapen next week, or in 5 years..........
Once the optic nerve is gone, nothing else can be done, ever. 
If the optic nerve can be kept "healthy", he will maintain his limited vision, and, if in 20, 30......years, a new treatment becomes available, he would be eligible.
In Dec., Waid will have a shunt put in his right eye, behind the cornea, to drain the fluid.  Can you imagine a drain small enough to go in his eye like that??--amazing.
The left eye anatomy is more messed up, and there is not room for a shunt in the proper place, so it will get laser surgery a few months later.  The laser surgery involves guessing how much of the fluid producing cells to kill. Kill too few...he still has pressure problems and risk the nerve blowing out. Kill too many...he could loose the eye.
At this point, there is no point in subjecting Waid to cataract surgery, it would not improve his vision, because of the "layers" of problems.  At some point in the future, it may be worth the risks.  MOST eye procedures that have good success rates in adults, have pretty big failure rates in kids.
For example, the adult success rate for corneal transplants is 80%, in kids it's only 20%, so this greatly affects our options.
As shocking as all of this seems, there were really no surprises for us.  We are thankful that his current vision can be maintained, and not deteriorate.  We love and value Waid just the way he is, just the way God made him.

6 comments:

  1. Oh, he looks so little and vunerable in the hospital bed. I know you are glad to have a diagnosis and know where to go from here. It is going to be so neat to see how Waid is used to further the Kingdom. And I know he brings such joy to you and your family.

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  2. I'm glad there were no surprises. Sorry for the leprosy thing, but not surprised; TB killed so many people in my parents' generation. My grandparents had foster sons whose mother lived years in a hospital with it before succumbing. What are they going to do about it? Does he actually have it or just test positive? My mother and three siblings test positive for it, but that can happen when you grow up on raw milk, as we all did.

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  3. Glad that you have be able to get specifics on your son's eye condition. I know that he is in the family that God intended so that he will be valued and well taken care of.

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  4. I love how you ended your post.

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  5. glad you have your diagnosis now...glad that the Lord already had you prepared...grateful for your attitude towards it all. He IS a treasure just the way he is. BTW, got the package..thanks! We will leave in 6 days!
    Trina

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