My husband and daughter were in Detroit today for an Evaluation Under Anesthesia (EUA) on both her eyes. She hasn’t seen her retina surgeon, Dr. Trese, in three months and has since that time had another EUA with her pediatric ophthalmologist to get a refraction, has had bifocals made to match her actual prescription and has been doing fairly well, or as well as can be expected given the general state of her eyes.
As a general update on what she can and can’t see, here’s a rundown on what we’ve observed over the past several months. She seems to have some form vision in her left eye. She can see and recognize large shapes, including numbers and letters. She isn’t the hazard she once was because she’s got enough general sight and peripheral vision to avoid obstacles. She has no depth perception because her right eye is completely occluded with scar tissue. Her vision fluctuates from day to day, but the fluctuations have seemed less dramatic than in the past. And lastly, her ability to tell colors is fairly poor, and not by just shades, big color differences.
After looking at her eyes Dr. Trese said the left eye looked good. He saw a light pigment change behind the retina, which was likely the cause of her inability to distinguish colors well. This may resolve but might never go away.
The pressure in both eyes was at seventeen, which is good. Very good considering the amount of time it’s been since she’s had Healon injected into her eyes to artificially increase the pressure. He thinks there is improved or healed ciliary body function as a result. This is great, because the only alternative would be to have her eyes artificially brought up to pressure for the rest of her life and low pressure can cause more damage over time.
Her right eye is almost completely occluded. He wasn’t able to do surgery today due to time (he wasn’t planning on surgery this visit) but we’ll come back next time and have him open up her field of vision in the right eye. He was positive about this step now that the left eye seems to be stabilized. They did do an ultrasound on her right eye and he thinks he sees some, “disorganization” which might affect function, but we won’t know until he gets a clear line of sight into the back of her eye on the next visit.
After her next visit he plans to do a procedure called a VEP after opening the eye up to see what amount of light processing she has in the right eye. We’ll try to schedule that before the end of the year and see what she can see, literally.
I get a lot of questions asking if her sight will be “restored” or made better. I tell people the same thing we were told by Dr. Trese back in December of 2015: the goal is to not lose more vision. Given the state of her eyes and the congenital malformations they have in concert with the insults she’s had via infection and injury, we’re just hopeful not to lose more. There is a possibility she will regain some vision, but she’s never going to have normal or even near-normal vision. But we have some vision, and that vision is better than it has been at certain times in the past. And for that, we’re grateful.
The Big Boy Update: This morning my son wanted me to have breakfast with him. He made me a plate of mini muffins but I told him I was in pain and wanted to lie back down. He told me, “mom, you can lie down on these two chairs right here.” He was very sweet, trying to make me feel better.
The Tiny Girl Chronicles: My husband and I know that when my daughter wakes up from anesthesia she’s really difficult to deal with. She never remembers it because the anesthesia is still in her system and we aren’t particularly bothered by it. This time my husband tried something different, asking her before she went back, “can you do me a favor and not be angry at everyone when you wake up?” They’re on a flight home right now so I haven’t found out if his request made a difference or not yet.
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