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Eye Appointment Update

Jude had an appointment with the wonderful Dr. Drack yesterday. It's always a bit of a long day, but it was a good day as well.

Jude had a VEP done. What is a VEP? A Visual Evoked Potential is a non-invasive testing method that provides objective information about the function of the entire vision system. VEP provides a means to measure the complete visual pathway, from the lens to the visual cortex, to detect mechanical or neural abnormalities related to vision. These problems are often subtle and difficult to detect.

We were worried that Jude would not cooperate, but he did well. We were in a copper-lined small room. They put an electrode on the back of his head and on his ears. Then they patched an eye, had him look into a machine and flashed lights at him for several minutes. He did it, with some encouragement from his fan club.

Jude's VEP confirmed that information is not going from his eyes to his brain at a typical rate. So, it confirmed again that his optic nerve is not fully functioning. Dr. Drack wanted to get the data in the system so that we could compare it to future tests. So, it's good to have a baseline, and it just confirms what we have thought for a long time.

They also tested his vision. His best test was 20/100. So at best, he has to be 5 times closer to things to see them. His worst test was 20/600. That would qualify as legally blind (20/200 is where that starts). Dr. Drack wants to document both results in his chart so that we can continue to advocate for more visual services through school.

She believes that Jude needs access to more teachers of the visual impaired and mobility experts. He does receive some services, but she said it's important to stay on top of it. Because Jude has functional vision, it is easy for his teachers (and us) to forget that he needs special 

We tried to get a photo of his optic nerve. However, the test, machine and technician were not suited for kids. Jude had to sit on a chair on his knees, lean into a machine (but not push on it), place his chin on a bar, keep his mouth closed and open his eyes wide. Then allow a machine to get so close that it could almost touch his eyelashes. That did not work out so well. Maybe next time. 

Dr. Drack said that we still don't know why Jude's optic nerve doesn't work well, but she said there aren't many genetic disorders that cause it. She said it's likely just the way that Jude was made.

We remain optimistic about Jude and his future. He is doing really well at school. He is with his typical peers all day now. He receives some special services, and we will continue to advocate for more. He is on track to go to the typical kindergarten next year at Cedar Heights with Lucy. Stay tuned for big things from little Jude. 

Thanks and much love for reading along.

Sarah & Chris