Wednesday, January 9, 2013

Charlie Update- Strabismic Amblyopia

Today was Charlie's last Visual Therapy appointment.
We've been going to the top rated place in Oklahoma for intense visual therapy for, what?-6 months now!
Twice a week we've traveled over 4 different highways (one way) and spent 2.5 hours a day to meet our appointments along with doing therapy at home every day (ok, we got bad at that I admit).

It was alot of time. It was ALOT of money. I wish I could say we see ALOT OF CHANGE. But we don't, and it's hard to let that not be discouraging I have to be honest.

Still. The Dr says "SUCCESS", and "This is a long haul process because we hope his eyesight can now continue to improve as he gets older but for what we intended to do, we did it".
From what they say his right eye is completely connected now and no longer disconnected (strabismus) but just this morning I saw it disconnect. And his eyesight HAS improved. In his right eye it has gone from 20/50 to 20/25 or 20/30 depending on how tired he is. The Dr says now that he no longer has a strabismus his eyesight can improve as he gets older and that is what they hope to see...but it will have to do this on it's own.
Without the therapy I guess he would have gone completely blind in his right eye and never been able to gain focus without intense therapy.

I'm not going to hide the fact that $7500 (out of pocket) and six months later we are disappointed. We are. If that makes us negative ninnies so be it.
I guess our expectations were too high. I thought he was going to see well, not still be blurry when he looks out of his right eye. What is the point of wearing glasses when you are still blurry?! Why not change his RX to make his eyesight NOT blurry. I DON'T GET IT.
I thought it would correct some of his color blindness, I was told today that there is no correction for it (I do not know this to be true because my research has shown me otherwise but I"m not a pro so that's all I'll say).
I thought he would be completely connected and we wouldn't see his eye move at all on it's own, now I hear it can when he's tired...well what's stopping it from going off again. Come on. For that much moula I would think there would be a more definite answer than this.
I thought his reading and writing would improve. It has only slightly but just on monday we had a sit down crawl under the chair fit over writing a paragraph. He still skips lines and struggles to see words.

Are we meant to say..ok we see slight improvement after 6 months and $7500 so that's good enough? And just look into our sons eyes who has been so patient, positive, and worked so hard and say...it's good enough for you son. We've done good enough. Your eyes sometimes work together. You can see a little better. We're good.
REALLY?!

I don't get it.

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