Tracking

It’s all about small increments with my daughter’s vision.   We’re not going to get a full return of normal sight with her, we understand and have accepted that.    But we do hope for improvement and that hope is something we will continue to have, regardless of time.  

Things that have gotten better over time since the original unknown insult occurred in her eyes has been hard to gauge.   She’s lost pressure in her eyes multiple times and they dropped to zero.   The right eye was covered in internal scar tissue, preventing her from seeing anything (even if she could, which is questionable).   The left lens grew into a cataract.   The left eye was traumatized and had an internal hematoma, blocking all of her vision.   In short, it’s been a rocky road.

But there are some good signs that hopefully mean stabilization and no more reduction in the minimal vision she has remaining.   First, her ciliary bodies seem to have healed some.   This is not a confirmed thing, but her pressure hasn’t dropped in a while.   Not having to artificially inflate her eyes to normal pressure for the rest of her life would be a wonderful thing.

Second, her vision is a known thing.   We have a +18.5 prescription for her eyes and she’s wearing bifocals which give her near vision of +21.5.   It’s a dramatic prescription, but without natural lenses to provide the lion share of refraction, her glasses have to do a lot more work.   At this point her glasses seem to be serving her well.   When we take them off her to clean them she complains that she can’t see.   The fact that she can “see” is a win in and of itself.

Her right eye has an opening in it through which she can see.   What can she see?  We’re not sure.   Probably light since she’s light sensitive there, and possibly colors and vague forms.   But there is a chance for healing in that eye and her brain can map the vision she sees now that the aperture has been opened.

Her left eye hasn’t had surgery since the lens removal and aside from steroid and dilating drops she’s had relatively stable vision in that eye for over half a year.    It’s this left eye that gives her almost all the visual information she receives.  

She relies on her hands quite a lot to understand her world.   Originally she used her vision and was frustrated because she couldn’t see.   Now that she knows how to use her hands to experience the world she disengages her eyes in a lot of situations and doesn’t even try, which is a good thing overall because it’s a skill she needs.

She does have vision though and she seems to see more and more (in small increments) over time.   For instance, she has to stand on a bar chair to see the television when we put a show on.   She puts her face about six inches from the screen and watches the show.   It wasn’t long ago that she would stare straight ahead and look at whatever color was in front of her, but now she seems to be doing some sort of tracking—following things on the screen—and looking around while the show is on.

She is now and will almost certainly always be a braille reader, but any increase in what she can see is something we’ll celebrate.   I remember when my mother-in-law came to town two months ago and my daughter wanted to play cards.   Nana ran out of the bonus room when she saw me and excitedly whispered, “she can see the cards!”  

So things are from a conservative standpoint, “marginally better”.   But it’s something.   And we’ll take any somethings we can get.

The Big Boy Update:   My mother quietly say by my son while he played Minecraft on his iPad last week.   He must have liked her sitting there watching him because he would lean over from time to time and hug her.

The Tiny Girl Chronicles:  My husband made bacon yesterday, something we only do occasionally.   He said to my daughter, “do you want some bacon?”   She replied, “of course I do.”