Yesterday, I took the girls to a new pediatric opthamologist doctor for a vision checkup. It is typically something that we do about 2 times a year. We really had a great experience with this new doctor. My girls both have the diagnosis of congenital motor nystagmus. For those of you without a medical dictionary, their pupils dart/jiggle back and forth under certain conditions- when they are focusing hard, trying to see distances, or especially tired or stressed. The biggest effect is that things can look very blurry. For example, if I am at a park Ari and Lily cannot see me from about 30 feet away. I have to use my voice and wave my arms to feel like they can find me. This may be perceived and not actual but I think it is accurate.
Here are some of the things that I have learned about my girls vision.
1. Ari with her current way too strong prescription is 20/200. That is the beginning of a "legally blind" diagnosis. She will be getting new lenses and retested in 2 months to see if it helps improve her corrected vision.
2. With that 20/200 she could actually drive. That makes me happy and scared at the same time that we allow "legally blind" people to drive.
3. It was very sad watching her read the eye chart and the pictures were still so big and she just couldn't see them.
4. Their type of nystagmus doesn't go away but usually it does get ever so slightly better as they get older instead of worse.
5. They must have got it from Dave because I have perfect vision and my X was obviously okay because the boys never got anything. But There actually isn't any evidence that it is a sex-linked trait.
6. Nystagmus can be combined with many other things-albinism, extreme low vision, cataracts, and other problems. But it doesn't lead to learning disabilities, just as long as they can see the words on the page. Ari and Lily have often surpassed the boys in milestones of development.
I am grateful that this is a manageable eye condition and that at least the girls have each other and are not alone in this. Unfortunately, Ari being the oldest will be more of the guinea pig. She will pave the way for her little sister. So as kindergarten is looming in August, we will make sure that Ari is given the chance to succeed.
Comments
These girls are very lucky... BLESSED to have you and Dave as parents. Parents who take such good care of them and try to get them the best care possible.
You two are awesome!!