Wednesday, May 11, 2016

So, Is It Working?

This post is about my daughter’s right eye.   The left eye, to immediately digress, has been improving slightly on its own.   We got lenses and she is wearing them all the time.   She does seem to be seeing better—when we compare it to what she could see/do in January when things were their worst.   But we’ve also seen her build skills through working with her Visual Impairment, Orientation and Mobility, Play Therapy and Music Therapy teachers.   She’s also had a lot of time to build skills based on her experiences.

So slow improvement over time with a possible jump in vision based on the corrective lenses.   But how about that right eye?   There is really no knowing what she can see out of it until we force her to exclusively use it.   Quick summary of the eye:  the retina detached, the eye lost dramatic pressure and was inflamed.   The inflammation resolved over time and the pressure was returned via artificial substances added to her eye.   Her retina has now reattached, but she lost her natural lens as a necessary step in the surgeries.  

Retina reattached, check.   Pressure back to normal, check.   Inflammation gone, check.   Missing lens corrected with glasses, check.    That’s it, right, now she can see again?   We’re not sure, because there’s one factor we can’t observe via medical tools and that’s how well the retina is functioning.   Did the rods and cones regenerate over the past five months?  Is the retina sending light signals to the brain?  If those signals are getting there, is her brain paying attention and can it interpret them?

Today I asked her if we could patch her left eye for five minutes, and when she said, “for candy?”  I said, “absolutely!”  She told me at that point she could only see colors with her right eye.   As soon as I had it patched, she was basically blind.  She wasn’t as scared as she has been before, but she was not able to find anything.   I can give you about twelve examples of things that happened over the next five minutes that showed she really was not seeing much of anything out of her right eye but I’ll suffice with just one and ask you to trust me on the rest:  our neighbor’s black dog was two feet in front of her sitting on the light-colored sidewalk.   I told my daughter to walk straight forward to find Luna and yet she still wasn’t able to navigate there or find the dog without help.

These weren’t the results I was hoping to have when we patched her left eye for the first time.  (This was a test, we will probably do more formal patching going forward.)   Multiple things might be in play here.   First, her right eye lens prescription took into account the heavy substance functioning as an internal lens in her eye.   But it’s only in that positions when she’s lying down, so her prescription may well be off for now until the PFO is removed in a few months.     Second, her brain may be getting correct vision signals but is just ignoring them (this is called amblyopia).   If that’s the case, patching will help over time, but based on today, it’s going to be quite the trial for her as well as us initially.    Third, she’s almost completely blind in the right eye and it’s permanent.

I’m not hoping for option number three.   I hope to report better news next time, but this blog journalist tries to write about the good as well as the bad and some days folks, it’s just not good news.    But she’s happy.   She’s always happy.  And that is a goodness.

The Big Boy Update:  Today in the car on the way to school my son said, “I want to go to the past.”   Okay, I didn’t expect that kind of insight from a five-year-old.   I asked him how he planned to get to the past to which he replied, “in a time machine”.   Little sponges, these children are.   I don’t know where he heard about it, but my son is now planning on building a time machine.

The Tiny Girl Chronicles:  My daughter got a trophy today at gymnastics.   She hasn’t been going for long to the class for visually impaired children, but seeing how it’s the end of the season we were there for trophy day.   She stood on the first place block and smiled while she was presented with her trophy.   She really likes gymnastics.   She’s also quite good at it.

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