We took my daughter to her pediatric ophthalmologist on Friday. Typically their office runs behind schedule and we weren’t disappointed Friday to find ourselves waiting two hours after our appointment time. The good news was my daughter made friends with three other little girls and I’m not sure I could have coordinated a more fun play date for her if I tried. The bad news was my husband had to leave before we went back to see the doctor.
The title of this post is largely me feeling all down and sad about something I read in the doctor’s notes after our visit. Medical notes are entered at the time of the appointment and/or afterwards and then I get an email letting me know notes have been added to my daughter’s file.
In this case, most of the notes were things I told them regarding changes since our last visit, current medications and the latest Dr. Trese status from our conversations with him. What threw me off was my daughter being described as “monocular”. But it’s true—she can only see with one eye. I haven’t accepted it will be her ultimate vision though—I haven’t given up on the right eye, even though it can see light and shadow, a few colors, and minimal motion. I just wasn’t ready to think of my daughter as having only one functioning eye.
That’s only part of what has me down right now though. It’s a fearful kind of down—the kind you get when you don’t know if something is going to make things better or worse. In this case, it’s about my daughter’s one functioning eye.
It has a cataract. This isn’t what we wanted, but hell, we didn’t want any of the other crap that’s gone on in her eyes so far—this is just the next thing. Her lens is malformed, being round like a marble. That’s not great, but at least it had been clear. Now it’s clouding. The clouding of a lens turns the lens into a cataract. To correct the issue so the person will be able to see again requires removing the cataract (clouded lens). Older people do this electively all the time as well as anyone of any age who has cataract surgery.
My daughter’s one good (functioning) eye will need to have the lens removed. Dr. Grace and Dr. Trese are going to coordinate to pick the best time. Here’s the trouble—it has to be done or my daughter will lose more vision. But when it’s done, it could stir things up within her eye. A low probability, but something to consider. The other thing that will absolutely happen is my daughter’s vision will go from being refracted through a lens to something different. I don’t know what that different vision will be, but it will be something she’ll need a different prescription for.
I’m scared though. We have to do this surgery at some point, but what happens when my daughter wakes up? The vision she uses to see her entire world is going to be changed. We don’t know how it will change and what she will and won’t be able to see—at least at first. The plan is to get her bifocal glasses so she can see both near and far better, but day one, post-surgery, who knows what she’s going to see.
I don’t want her to panic. I don’t want her not to be able to see. I’m worried, but I know it has to be done. There is a possibility it’s a good step in getting her more functional vision, but today I’m just worried. I have confidence in our doctors, it’s the situation that makes this so difficult.
The Big Boy Update: My daughter really gets upset for no reason sometime. I heard my daughter complaining the other day as she and her brother were getting dressed upstairs. My son said to her, “you’re just trying to get me in trouble.” I didn’t know he had figured out that was something she might try to do.
The Tiny Girl Chronicles: My daughter’s overreactions to things is something we’re trying to get a better handle on. Our music therapist suggested we focus on positive touch with her since she seems to get upset by the simplest of touches from her brother, or wall, or friend, etc. I think it’s been making a bit of difference, we’re going to need more time to really evaluate it more though.
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