Saturday, April 11, 2015

His eyes

He has Achromatopsia too.  Looking at the photos of the first few weeks, I can see why we only knew for sure when he was 8 weeks old:  He really looks at the camera.  I could never capture a picture of Jean looking at the lens, he would always be squinting and trying to hide his face.  But 10 years ago we did not have a proper camera that could take pictures in lower light settings.  I think we have adapted the whole house, too. People sometimes comment on how dark it is in our house (thanks to the wood paneling that has still not been painted), we do not switch the lights on if we can still see well enough.

He developed nystagmus right around his 8 week follow-up appointment with the pediatrician, and that is when I finally knew.  I cried for a day, and then we carried on.  He will be okay; in fact, it is fascinating to see how different he is from his older brother.  We thought Jean would just sit by me because he could not see much.  If we had JackJack first, we would have thought that he never sits still because he doesn't see much and has to explore!  Achromatopsia is also a bit of a spectrum disorder, so it is possible that he can see more than Jean could at that age.  Jean's best corrected vision is 20/350, the average visual acuity for people with Achromatopsia is 20/200.

I have not taken him to any specialist, yet. We did order tinted glasses from the low vision specialists in Indianapolis, but I don't want to sit in waiting rooms with him the way I did with Jean. It is so much easier this time. I don't have to worry about whether he can see at all, or why he can see so much better at night than during the day, or if this is going to get better or worse, or if this is part of a bigger syndrome with more symptoms etc etc etc.  I can just enjoy my fat, busy little baby boy.

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