Last week the boys had their follow-up eye appointment at Seattle Children’s with Dr. Weiss. This appointment was to assess how William’s development was going and figure out if Jackson also has Ocular Albinism.
Using an OCT, Optical Coherence Tomography, machine they were able to map Jack’s retina. OCT is essentially an optical ultrasound. They were using it to assess his macula (oval spot in the center of the retina responsible for the highest acuity vision) and fovea (small pit in the center of the macula responsible for our central, sharpest vision.) Jack has both (which is good, because many people with OA they don’t have a fovea), but they are abnormal. The most interesting part of the test was that they found he had very, very mild nystagmus. It is so mild that it was only detectable by the machine and can’t be see by the naked eye. So it is confirmed he has a very mild form of OA.
They also tested Jack’s vision. This time he tested better than before 20:25 in his right eye, but 20:40 in his left. Together he tested 20:25. That is a significant enough difference for Dr. Weiss to want Jack to wear a patch on his right eye for the next 6 weeks to see if his left eye will strengthen. We call it his pirate patch, since luckily he is into pirates right now. He only has to wear the patch 4-6 hours a day, so we are able to avoid having him wear it to school.
He is being very strong about having to do this and explaining to everyone that he has to wear it to make his eye stronger. He is coloring the patches to make it more fun. This is the patch he did for the Husky game over the weekend. He even wrote Locker on it.
Will had his visual acuity tested and it is still in the normal range and a little better than last time, which is good. They dilated his eyes and because he sits so well we tried to get an OCT on him as well (they usually aren’t able to do them on kids under 3.) We were able to get a good enough picture to at least give the doctors a better idea of his macula and fovea. It turns out that his macula and fovea are at least as good as Jack’s, maybe better.
That gives us hope that his vision could be better than we originally hoped. Dr. Weiss is not willing to put a number to it, but there is hope. The only difference between them is Will’s nystagmus is more pronounced, but still considered very mild. We feel that his nystagmus is actually getting better. He is able to control it at times and it is only really dominate when he is trying to look far away.
The good with the bad. Overall it was a good appointment, the boys are progressing, Will’s vision continues to develop within the normal range. We have a diagnosis for Jack, if it wasn’t for Will we probably never would have known that he had it. We probably would have thought that he just didn’t have perfect eyes (who does, I certainly don’t.) The hardest part is the patching.
After dealing with Jack’s NG tube and all the looks that we got during that time I was having a hard time with the idea of a patch on his beautiful face. Even though Will has eye issues they aren’t completely obvious to every person at the grocery store. The patch was going to be. I put on a brave face for Jack and it is going well so far. We are able to avoid having him wear it to school, but that means he has to wear it to Kids Club at the gym. The first morning he got a lot of questions, but now everyone knows and it isn’t a big deal.
So I am trying to smile as I put it on and take it off everyday, remembering that if we have to do this for 6 weeks to help him have better vision for the rest of his life it is worth it.