Thursday, October 11, 2012

World vision Day- 10.11.12

Do you shop Toms shoes?
Today I hand an ad in my "in box"
Someone out there declared today as
"World Vision Day"
Pretty interesting that I had scheduled talking about G's  eye conditions today for Down Syndrome Awareness month!
So lets get started.
I suppose I will start with the biggie, 
She was born with them.  For those of you that like statistics
1 in 10,000 children are born with them.
From what I understand 
its more common in children with Down Syndrome.
The pediatric opthamologist at Emory said that the surgery is usually done younger than 6 weeks.

Then children then have their prescriptions changed approx every three months because the eyes change so  much while they are growing.
We don't have much on the details. But we are nervous~
Things weren't done in Ecuador the same way they are done here.
Lil G was 13 months old before her first surgery.
from looking at her records she was seen every 6ish months.

Which leads us to our next eye conditions
Strabismus. This condition has to do with the muscles.
Nystagmus, this is where you can see the eye vibrating, in little Gs case it's from side to side. I was reading that this may be the cause of her "head tilting" she is trying to compensate.
We are hopful that eye surgery will correct these two conditions.
Amblyopia, lazy eye. Lil Gs is deprivational or strabismus amblyopia, the brain gets used to seeing blurry with that eye, we are hoping surgery and patching will help. We are hopeful that her brain can relearn how to interpret the signals,
 improvement can be made up to 14 years of age.
Esotropia,, cross eye. 
Intraocular lens implant, IOL we are hoping to eventually have a lens implant. We are unsure at this moment.
If you'd like to look up any of the conditions on our list
You can go take a peek here.

(this is the smallest pair - look how tiny!)

(see how thick they are- they are quite heavy for their size)

Many of these conditions were caused because correct vision was not restored.
Now we are patching the stronger eye so the weaker eye can get plenty of use and 
Praying that the brain can relearn , create new pathways,
 to interpret the signals being sent to it by the eyes.
I had no idea how horribly wrong things had gone,
Please don't get me wrong, I believe this was all unintentional.
The sad thing is,I thought we would get her home
Get new glasses/  contacts All would be well.
Until she was old enough to receive an artificial lens transplant.
I had no idea it would not be so easy.
Even when she was seen by a local"pediatric ophthalmologist" 
They didn't even catch it. They just filled the new glasses with the previous prescription.
If I hadn't gotten upset because they didn't have frames to fit her.
We still might not know.
I took her to our optometrist and she questioned things.
She wondered why lil G wasn't in bifocals.
Poor thing, she didn't even have her up close vision corrected.
My little darling is legally blind.
With her glasses on.
I knew she was legally blind without her glasses.
But truthfully, I thought she could see 20/20 with her glasses
Or pretty close. 
Nope 20/200.

You know, she does pretty well in spite of it!
In reading up, "children with significant eye problems also have delay in speech because they cannot see the mouth movements their parents make when speaking." Insert a sigh here.

    (this is how thick the last pr of glasses in Ecuador were)


  1. This post was very good and full of information.thank you for that...poor girl she needs to see!!!! We have to start patching too..started yesterday..and have to do it for three months to see if it will help..i just put up a post about it today too..

  2. Wow...very, very complex stuff. It is pretty amazing how much us Mamas have to learn, OJT. Prayers for wisdom all along the journey in helping her overcome, re-route, add to, the things that vision issues have slowed down. Blesssings, Jennifer

  3. Thank you for sharing.. My son also has DS , hes 4 1/2 and also wears glasses he just got his bifocals and loves them very much, i was so worried about him adjusting to them and he did without any problems, hes worn glasses since he was one, i also have about six pairs of glasses in my draw.. Lol the best ones are called Specs4Us please look them up, they are made special for our kids to fit their beautiful faces..

  4. Okay, I have *seriously* missed SO much from my friends this month!!! Maybe next year I'll skip the blogging 31 for 21 and do a Reading 31 for 21 so I can read everything that everyone's writing!! Oh, poor Little G. :-( I didn't realize her vision was so bad. I really hope the patching works to help her out! And that's very, very interesting about speech delays... ((hugs)) to your sweet girl.


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