Thursday, February 4, 2010

My very own pirate

So.  You may remember that my little dude Nathan was diagnosed with a Congenital Cataract at 4 months old which you can see in some pictures where the camera flash bounces off of it. 

And that we had been seeing a Pediatric Ophthamologist, Dr A.  Who prescribed glasses for our little dude at 13 months old because of some nearsightedness in that eye.

Ok not THOSE glasses.  These

Well, every few months we went back to Dr A who always said we would see what happened at the next visit, and the next, and the next.  And this kept on until while we watched this:

Nate's eye turned more and more inward.  At his visit with his Pediatrician this fall she took one look at his eye and said "Oh my, what is Dr A saying about that".  So we filled her in that he was, essentially saying and doing nothing.  We all agreed that it was time for a second opinion.  So, after fighting with our insurance for a while we finally got to see this guy. 

Dr B works at the University of Minnesota Fairview.  We are quite familiar with that place.  

So Dr B had his students examine the little dude(after all, this is a University) for pretty much an eternity.  Our little dude was amazingly Patient as they repetitively asked him what was on this picture or that, shined bright lights in his eyes, and even when they dilated his pupils. As they were doing their tests Craig and I realized it didn't look good.  We were no doctors, but it was obvious little dude couldn't see out of his right eye. As one student would leave and go get another to confirm her findings Craig and I exchanged worried glances.  Finally, just as it seemed little dude was no longer going to be distracted by Curious George or be the cooperative 2 year old we had been so impressed with, they told us they were finished, and now we could see the doctor.  Who would essentially do it all over again.

Dr B was thorough but quick and little dude fell asleep on daddy dude's lap as we discussed the situation.  And what a situation it was.  

Little dude, Dr B explained, is "legally blind and then some" in his right eye.  The bomb dropped on the table and you could have heard a pin drop behind it.  What? When did this happen?  How did we miss this?  How the heck does a child go blind while under the care of a "skilled" Ophthamologist?  What now?

Well, now comes the hard part.  Dr B explained.  What happened was this.  Little dude was born nearsighted.  In the beginning of our lives the eyes don't see together.  They battle for attention from the brain to develop.  Since little dude was born so nearsighted in the one eye, it couldn't compete for attention and was left in the dust when the brain decided to kick it to the curb and favor the left eye.  So little dude became essentially blind in his right eye while his brain chose to only recognize things seen with the left. This is called Amblyopia or "lazy eye" (which contrary to popular belief is not an eye that wanders).  Once the brain turned the right eye off, it began to slowly turn in, having no purpose.  This is called Estropia.   So Little dude started off with nearsightedness and a Cataract (which we are told is never going to be an issue for him) which turned into more problems.

The hard part is that in the first 4 years of life there is this window to turn that eye back on.  After age 4 there is some hope, but not much.  Since little Dude was about to turn 3 we decided that we must be very aggressive to try to get whatever vision he was going to have back.  An insurance policy Dr B said.  In case something were to ever happen to the eye with good vision. How would we do that?  Eye patching.  Agressive eye patching.  Every waking hour ideally.  Many kids are patched for a couple or a few hours a day, we need little Dude patched "maximally".   "It's going to be hell" Dr B told us.  And that was the understatement of our year.

Equipped with our box of patches we go home and make a plan to start patching after Christmas, which was in 2 days.  I ordered some neat patches online and we made the committment to do this, completely underestimating how hard it would be on us all.

For the first 2-3 weeks patching went like this:

Put the patch on and the screaming ensues:

After about 10 minutes the pleading begins, while he peeks the eye open, does the Stevie wonder and the alternates between screaming and pleading.  

Then, due to the lack of visual stimulation he sleeps:

When he wakes he sneaks off and throws that patch on the floor

Lather. Rinse.  Repeat.  All day long.  Every day. 

But slowly but surely, if we could catch him before he peeled it off we got more time.  5 minutes here. 30 minutes there. With the increase in time we also noticed something even more miraculous.  He was getting off the couch, walking around.  Eventually navigating the stairs and playing with his siblings. And then trying to play with some toys... and then even trying to look at a book!  Mind you most of these attempts ended with "I can't seeeeeee" and my heart smashing into tiny peices, but he was trying.  And my god, could it be?  The vision was improving to slowly allow him to do more and more.

We saw Dr B again a few days ago and he was very excited by the progress.  He said if all we ever get is the "walking vision" we have achieved that is a valuable gift we've given him. He also said that the patching was trying to turn the brain back on, we discussed Lasik surgery for the nearsightedness (although will probably just continue with glasses, for the added benefit of protecting that good eye) and surgery in the next year or so to fix the Estropia, we can help little dude to live a great productive life.  He will drive, he will do all the things little dude's do.  

And I leave you with a picture of my favorite pirate:

1 comment:

Just Jiff said...

Wow! You are an amazing mom. I can only imagine how difficult that was for all involved, but thank goodness you stuck it out! I'm anxious to hear how he keeps progressing. :)