Today was Tyler's eye appointment with his previous Opthamalogist Dr. Larsen. It has been almost 2.5 years since we have seen this particular doctor and so Tyler has done some growing and changes. But not to many growing and changings that we are horribly concerened.
Most of the appointments for him right now are maintenance appointments. Meaning we have a baseline that we must keep in order to be deemed healthy by that particular doctor and to extend our visits from once a year or 2 times a year to longer. At each specialist there is something in particular they are looking for.
The picture above is Tyler waiting to do the cue cards that help identify what acuity he can see at. These are pretty cool cards and Ty had a great time pointing to the stripes. As they get smaller together and harder to see you see him pointing at the pin hole that they tech looks through to see if there is actual recognition that they see it. When you see that you have a few more cards to go and he isn't seeing them sometimes you feel a little more sad. But Ty did really well. His acuity is somewhere around 20/260.( He can see an object at 20 feet that I can see at 260 feet) That is bad... really bad
The acuity charts are not done in the exam chair. They are done sitting by me in a regular chair. Tyler is then moved over to the exam chair. And yes... this is really what he does. He gets so so so so sad. And he knows what is coming. They put on a movie for him where they do the eye screening. So as you can guess, he can't really see that far. But we moved fast when he thought Lighting McQueen was Roary the racing car.
A long with the idea of the REALLY in depth exam you have all the scary equipment you would see otherwise in a eye exam room. But to a blind 3 year old you can't help but want to be curious and scared at the same time. So I usually let Tyler explore his surroundings as we get use to them, he lightens up until the doc comes in.
The Moran eye center is one of the best in the nation. they have all the high tech things for them to use and for us to get the best care ever. The above piece of equipment helps test glaucoma and the below helps put the images on the screen according to what the person can see.
Along with all the instruments, computers etc, we sat right there while they dialed in and pulled up Tyler's last CT scan he had at a different hospital, the dictated report and all the information they needed for Tyler.
Now for the boring but mom finds interesting part:
The image taken is me sitting in the exam chair and with the no zoom and no editing in any way picture is what Tyler can see. Meaning with his glasses ON he can only see objects 20 feet ( or the space between the chair in the eye room and the chart) that are this large. Anything smaller he can't see. His prescription is a -9 and it hasn't changed in a while.
I still didn't get how or what he saw or why it was so hard for him to wear his glasses. So settle in!
My glasses are -5 and -6 respectably but I have a astigmatism which means I don't have clear vision and it is kinda messy. I can't see pretty much anything. I see shapes, sizes, outlines. I see what Tyler sees with his glasses.
His eyes are not being correct to see what you and I see. His are being corrected so he has some vision. He will not be able to see "perfectly" but will have to have what he sees enlarged in front of him. He needs it enlarged 260 degrees or almost 300 times larger than regular print.
The exam to get his prescription is VERY traumatic, his eyes get dilated and then he has to be literally held down with his eyes pried open. I am the one holding he is the one moving and the doc is the one dodging the bullets of his feet. It isn't pretty. Ty is WORN out over the exam. He can use a magnifier but really that makes his brain work harder to see.
When I take my glasses off I can see my hands up to a certain point then they go fuzzy. That is how his are but his fuzzy if closer and his fuzzy is harsher. So from ten feet away the only actual thing he can see is the Door handle the rest is just a blur and an outline.
Ty's doc is getting some stuff ready to send to his school for better modification for him. And now we can answer some questions.
Like why at Chickie cheese when it is loud and a lot of people and things going all over can and does he get overwhelmed? The answer: because he can't SEE what is going on. His ears, which are fine, can hear but his brain and eyes can't see it.
Why when he gets to the top of a play ground place does he freak out and won't go down the slid? Answer: He can't see the ground. He doesn't know where he is going. He can't see me, he cant' see familiar.
He doesn't like to wear his glasses because we have always brought his world to him. He has no peripheral vision at all. He only has his little big of central vision that is there. It may get a Little better but most generally this is it.
Long term: He will NEVER drive a car.
* These are not NEW findings for us as parents, just better information as to how and what he sees. He even Showed me what he could see using what crappy vision I had. It was more for others who are still "learning" his visually extent."
2 comments:
It sounds like you have a very wonderful doctor! I'm glad that some of your questions were answered, even though it was hard to hear, and that he will be sending info to help Tyler at school.
Debbi
Sounds good to me, and sounds like your Dr really knows his stuff... It also sounds like you are finally getting to understand what he can/can't see... it's scary, but great news.
20/260 is bad, yes, but my vision with out glasses is 20/400... In this reply to you, I am sitting about 6" away from a 23" LCD monitor - or example. It's so hard to describe vision to people; but it really sounds like your doctor did a fine job.
You have a long way to go, but their are great technologies available to you in todays world, USE them... and show no fear in getting the services you need for your son at his school.
Keep up the good work Ty...
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