Over the last few weeks we've settled into a state of normalcy with Jesse. His nystagmus no longer consumes our every waking thought and most days we don't even think about it. He's just our sweet little Jesse who is probably the happiest baby ever. Seriously, this kid is so happy.
Well, last week it came time for us to focus on the eyes again. A few weeks back we were fortunate enough to get an appointment with Dr. Lingua and it was now time for us to make the trek down to LA see him.
Our appointment was set for the Wednesday before Thanksgiving and we were very grateful to be able to get in to see him with only a few weeks notice, especially since he only operates on kids over 2 yrs and Jesse is only 6 months. His assistant, Susan, is wonderful and so understanding.
Also while we were there, another family from one of my FB groups (American Nystagmus Network) happened to also be visiting with their daughter to get this very procedure done. Her little daughter was having her fourth eye surgery and we happen to have our appointment at the same time as their follow up. I cannot thank them enough for talking to us and sharing stories like we were life long friends. Understanding what they went though gave us so much insight into what we may encounter someday with Jesse.
Our appointment with Dr. Lingua was fairly short, but gave us confirmation on what we had all thought but could never say for sure, and that is that the 'hardware' that makes up Jesse's eyes looks great. Optic nerve, fundus and retina all look good and he has no refractive error. Dr. Lingua agreed with our opinion not to get an MRI at this time and he did not detect any optical albinism. If it weren't for the movement he would probably have great vision and even with the movement his vision probably won't be that bad. Which we can already tell with how active Jesse is.
Though a short visit, we were glad to have someone who is so highly regarded look at Jesse's eyes and we will probably still follow through with our plans to see Dr. Hertle sometime in the new year. Though Jesse may have surgery someday, it will most likely be to dampen the movement to help him in social settings more than anything. And though we aren't out of the woods yet, we are really so grateful to hear that his vision looks decent and to watch his development progress each day.
Speaking of development, make the jump HERE to read all about our trip to LA and the recent milestones that Jesse and Max are hitting.
For Part VII click here: A trip to see Dr. Hertle
and HERE to start from the beginning.