There are good days and bad days with my daughter’s vision. And by that I mean in how we think things may be going, how much hope we might have and how she seems to be seeing overall. Today I think is one of those very bad days for me.
We return to Detroit in two days for another evaluation under anesthesia to see what help the surgery did on her right eye. We’re hoping to get a refraction done on her eye so we can get her some glasses that will correct for the lack of lens in that eye. In the meantime, we hope things have begun to flatten out in her retina and vision is becoming more stabilized. We don’t know though, because she can’t or won’t tell us.
We do a test from time to time which she doesn’t like by covering her left eye. We ask her if she can see anything like a color with the right eye. She is always highly anxious when we do this and has trouble understanding it’s only for just a moment to do the test. On three occasions now we’ve covered the left eye with a patch to get a little longer observation of the right. Today we tried for three minutes and we could hardly make any observations because she was so upset by not being able to see.
She can see something though, but what? She says she can see a waving hand, but we’ve done the wave a few times now. I think she can see that though. She does this thing where she rolls her eye way back when we cover the left. I’m worried she’s only able to see things if she does this and all this work with the right eye is going to get her two percent overall light vision.
The left eye my husband is worried is getting worse. I’m worried too. I just gave her a book with a big elephant on the front. She pulls it so close to her that she can’t get the overall picture because it’s just too close. I tried from a distance of ten inches but she says she can’t see. We tried several things and ultimately she guessed it was a squirrel, but we’d told her it was an animal and she could tell the grey.
Tonight after dinner my daughter couldn’t even tell where the car was when we were standing by it after dark. Yes, it was after dark, but we were in a parking lot with lights all around. Is this worsening or the same as before? I just don’t know if we’re gaining nothing and losing more.
She has so little sight right now. I don’t even know how to entertain her. She can lie on her back and watch things on her iPad, but she has to be so close it’s not something you can do with her. Every game we have for children is a game that needs sight in some way or that she needs help with or would be unfair to play with her and her brother because he’s sighted. We’re trying to come up with options, but she has limited things she can do because of the solution in her eyes as well.
It’s frustrating as hell and depressing and she’s so independent she doesn’t even want to be hugged and held because she’s too busy living her life, not mourning her situation like I feel like I’m doing every day. I am hopeful for good news on the fifth. I would really like to have at least one eye turn around and begin to see something more or better instead of seeing less and worse which is all that’s happened since August when this started.
The Big Boy Update: My son love the “Light Savers” from Star Wars. He has no interest in any other, inferior, pronunciations of that phrase no matter how many times you tell him.
The Tiny Girl Chronicles: I may have written about this, I can’t remember. We put up some butterflies on the wall of the children’s bedroom recently. My daughter named them each after a family member, with some family members getting two butterflies because there was a regular and a baby version of them. The only outlier was a very special big butterfly she told me was “The Kona Truck.” I messaged Aunt Kelly and Uncle Eric to tell them their Kona Ice truck was a member of the family.
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