Tuesday, March 10, 2009

Unbelievable News

Connor had an eye appointment today. This is with the same doctor that saw him a year ago.

His optic nerve hypoplasia in both eyes and the Duane's syndrome in his left eye? Vanished.

They aren't supposed to do that, by the way. A misdiagnosis is of course possible, but it was pretty clear last time we went that he had both of those things-- you could see the retraction of Connor's eyes into the sockets when he tried to look to the left or right-- something that is a huge hallmark of Duane's syndrome and distinguishes it from similar issues that are due to muscular weakness of the eyes instead of a nerve issue. We have pictures of him taken of him with his right eye turned in and his left eye straight. The doc was a little more unsure of the optic nerve hypoplasia at the time, but said that though it was mild, it was there. Now Connor's vision has improved to the point that the ONLY thing wrong with his eyes is that his right eye has Duane's syndrome and he is a little far-sided. Suddenly he has peripheral vision, too--something he's never had. The doc said he can probably see just as well, if not better, than typical kids his age. So I can take optic nerve hypoplasia completely off his list of disorders, and we can stop making special accommodations for his vision at therapy and play group, as he doesn't need most of them any more. Amazing.

The funny thing is that Connor does this sort of thing all the time. His soft spots closed at birth (for the back one) and six weeks (for the front one) and we were supposed to have to do this major surgery to reopen the sutures in his skull, but then his head mysteriously kept growing despite the completely closed sutures, and is now rounded out and completely proportionate to the rest of his body. He had severely high levels of calcium in his blood, levels of the type that cause people to go into comas, that not only had no effect on him but suddenly righted themselves when he was six months old. And you can't forget the whole "brain-stem response only" prognosis. Knowing who we are? Standing? Learning sign language? Impossible. Yet here he is, doing all of those anyway.

In the end Connor leaves me both baffled and overjoyed. To the doctors he is a mystery, but to me he continues to be, and always will be, a miracle.


~Jess

13 comments:

Julia O'C said...

Go, Connor, Go!!!

When I was pregnant, we were told that Emmett would never smile, communicate, know who we were or even be able to hold his own head up (he does all that and more, by the way). So I can relate to your anguish as well as your joy.

Maybe you'll have to add "Where Did It Go Wednesday" to "Medical Monday", as Connor continues to defy the odds and just do his own thing!! I'm very happy for you.

Holly Nappi Collins said...

As someone new to your blog, that sounds like incredible news and it also sounds like he is the product of good and loving parents!!

Julia said...

WOO-HOO!!! I think it's an attitude thing. He's trying to stick it to The Man (in this case, the doctors) and prove them wrong whenever possible. I'm sure he takes a secret delight in baffling them.

Seriously, he really is such a bundle of miracles, and I'm so happy for you. Yet again, you and Connor have made my day.

Kara said...

It's so nice to get some good news once in a while, and that is GREAT news! Congratulations...you must be overjoyed!

Edit said...

What awesome news! Somehow I am not surprised though. You and Jeremy are such loving parents and God works in mysterious ways. This just reminds me of the conversation you and I had back in college about the sudden miracle that occurred to stop your fainting spells. You and your family are an example to me of the power of love!

Anonymous said...

that's so awesome! go Conner!

-Jing

Torina said...

Excellent. It is nice to get good news, isn't it? :)

Michelle said...

What strange and joyful news! I think a child can beat incredible odds with loving, committed and positive parents by his side, and your Connor sure is gutsy . . . and inspiring! Thanks for the great post today!

Lucas'Mommy said...

That's such great news. He really is an amazing little guy!

Anonymous said...

FANTASTIC news! I am so happy for Connor.
xxx
zanda

Connor's Mom said...

Wow-- thanks everybody!

As I say all the time to people-- Connor didn't get the memo from the doctors on what he's supposed to be doing. I'm pretty sure he's working off some other agenda.

~Jess

Mia said...

THAT is amazing. He seems to be such a miracle!

Ellen said...

I am late reading this, but beyond ecstatic! That is absolutely incredible. It really is proof that doctors just don't know it all--we've certainly learned the same with Max. I hope Connor continues to amaze you. Actually, I KNOW he will.

 
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