Kiran was scooped up from preschool, and we headed straight to Iowa city for his eye appointment this afternoon.
These appointments always take the longest. Lots of waiting.
All the news was good today.
His right pupil is remaining open. When they do the surgery Kiran had to help open up his pupil in his right eye, oftentimes it shrinks back down due to scar tissue. That is not happening for Kiran at this point – His pupils are roughly the same size, and Dr D was able to clearly see the red reflex in both!
The cataract in his right eye is not getting bigger. At this point, it is not getting in the way of his vision.
We did a repeat VEP test. Kiran had this test done two years ago. This measures how quickly and with how much strength visual stimuli is getting to the brain. The strength of the signal was HUGELY improved from two years ago and was essentially normal. The speed at which the signal gets there, however, is still quite slow. She explained that adults who have had normal vision that then develop this issue often describe things as being “muddy”, color contrasts not being as sharp, that kind of thing. But we were all quite excited about the strength of the signal – huge improvement that Dr D didn’t necessarily expect at this point.
She does feel he has vestibular nystagmus. Nystagmus is the shakiness of the eyes. He used to have it all the time as an infant but has largely grown out of it. However, we are now seeing it with certain movements – like spinning – that have to do with the vestibular (think inner ear/balance/coordination) system. We want to be careful not to overdo those movements and continue to explore them cautiously in a therapy setting (which we do with our OT already).
Dr D also felt his eye teaming – or his eyes working together – isn’t perfect but is a lot better than what she would expect at this age given his history. Since he had such a small pupil and all those pupillary membranes in his right eye for the first roughly 18 months of his life, his eyes didn’t learn to work together during the time they normally would. This is often a permanent issue, and she said there’s not much we can really do other than what we are doing: Have him wear his glasses, offer visual stimuli from various distances, etc. But, again, she felt that his teaming was better than she would have predicted given his history.
All in all, I will keep taking this news. Kiran is doing great, he is improving visually, and he’s just a rockstar patient.