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Retinal Specialist Appointment

On Monday, the girls had their annual visit to Dr. Matthias, the retinal specialist. The girls are such troopers through these appointments. Its hard work to sit still and look into bright lights and hold your eyes still while they take photos and measurements. Especially when the machines and chairs don't fit little people, and you have to sit on mom's lap with your legs squished under the table. Waiting rooms are not exactly fun either, but we make our own fun.

These visits are kind of moot, since there is nothing to be done to help improve their vision. We see the retinal specialist because they can more accurately determine their vision and the health, or rather decline, of their retinas.

Both Cecilia and Lilly's vision has declined. In April of 2017, Lilly was seeing about 20/80. This year, Lilly is seeing about 20/300. Last year, Cecilia was seeing 20/500. This year, she measures at CF5'. This was a new terminology for us. This means that her vision is no longer measured using 20/xxx but rather by Counting Fingers at x Feet away. So, basically, Cecilia's distance vision is at a 5 foot distance. Anything beyond that is out of focus.

{Side lesson- What does 20/xxx mean? A person that sees 20/300 would have to be standing at 20 feet to see something clearly that a person with good vision could see at 300 feet.}

The spot on their retinas has also grown. The cells are dying rapidly.


Based on what we've learned about Batten, and seen from other Batten kids, we would not be surprised if Cecilia's vision is reduced to light sensitive only within the next 1-2 years. Lilly's vision seems to be declining at the same rate that Cecilia's has.

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