Sunday, July 5, 2009

Update info on glasses

I've had a few people email me about Gavin's glasses, so thought I would post about it, since it may be a little confusing.

Gavin's glasses are not prescription, the lenses are clear. I have been pushing to get him glasses for a few months now. We tried various sunglasses that did not work, he was not happy with them. Since he needs sunglasses because he is very photo-phobic (light sensitive) AND he presses on his eyes constantly, we decided on the transition lenses. He has one pair of glasses that serve double duty. So far so good.

Gavin doesn't have much sight, if anything at all. We talked to his doctor, and both agreed to go ahead with clear lenses since we still don't have a diagnosis or the ERG done. I didn't want to wait until that was done for us to get the glasses, because too much time has gone by - waiting. So, we made the decision to get the clear lenses and if by chance they determine some prescription lenses would help what remaining sight he does have left, then at that time we will switch them out. He needed these for the sun since summer is here, as well as I hoping it would temporarily be a diversion of the eye-pressing.

When we first put them on, he didn't like the sensation of the curly q's around the ear, that's the rubber band that wraps around his ear to keep them up. He fought that for a total of two minutes. He was cranky at the time, and tired, we were on our way back from a museum and he just wanted to be home in his confort zone. I almost gave up, but we sat him back in his car seat and the fussiness was gone. He was a happy camper feeling around the glasses and putting his hands down.

These have truly been a blessing!

Gavin's eye pressing has completely stopped. For those new readers, he constantly presses on his eyes with his fist, which causes blackness around the eyes as well as sunken or deep set eyes. This is a common behavior of babies who are blind with retina diseases. It is a full time job to keep his hands down.

I think as he gets older and he begins to develop his fine motor skills better, he will start getting his fingers and sliding them under the glasses and continue with the eye pressing. As of now, which is what is important, he does not have the abilty to press on them and actually is not even really trying. He has ripped them off a total of 5 times, which I don't think is pretty bad! He is holding his head up more, his head isn't down with his fist in his eyes, and he just looks and acts so much older! Not that I want that, but I feel he is more aware of his surroundings since his focus is not having his fists in his eyes. He is just getting so big, and looks even older with them (which makes me sad the baby stage is on it's way out, and the toddler stage is around the corner). How can that happen so fast!

He has the Flexcor Titatium transition lenses, and we purchased them at "A Child's View" in Brea, Ca. Those of you in the area and need some eyewear for your little one, I highly recommend them. They are extremely helpful and most importantly patient and comforting. They add to our growing list of support for Gavin.

His eyes are not looking as deep set, and are actually coming back to normal position. It's so amazing what a difference of just two days of no eye pressing can do. And I thought we did a good job of keeping his hands down.

I'm so proud of him, he is doing so good. He is so inspiring and he doesn't even know it.

1 comment:

  1. Yay, so glad the glasses are working. Huggs to you.

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