Wednesday, March 27, 2013

The Ups and Downs of LCA

"You take the good, you take the bad, you take it all, and there you have - the facts of life"

Ah 80's TV.  Remember "The Facts of Life"?  This line from their intro song stuck in my head yesterday afternoon after we drove home from Finley's vision field test.  After last Friday we learned that Finley's retina seemed to be stable, we found that her vision field has deminished.

Last year at this time, she still had a little bit of sight left in the very center of her eye, but now that is gone.  She has no more central vision left.  And her peripheral vision has deminished by 10%.  Last year she could see 50 degrees and this year, 40 degrees.

The vision field Dr. is my favorite of all of Finley's doctors.  She is amazing with kids and extremely patient.  She sets aside 3 hours for testing and talking with parents about the results.  She never rushes.  When she retires (which is going to be soon) we are really going to miss her.

We spent time comparing Finley's test from last year to this year.  It was hard to see that she has lost more.  But we knew it.  We could tell by the way she has been acting at home that she had lost some more vision.   The new glasses don't be making much of a difference for her....yet.  Dr. Mayer seemed to think that since they are mainly for astigmatism it takes the brain a few weeks to adjust, so we may see some improvements.  We will just have to wait and see.

The hardest part is when after 3 years of visits with Dr. Mayer, she patted my hand and gave me that look of pity.  She said that the inevitable is happening, and we know it.  She is legally blind.  It was almost like she was accepting it more than we were.  You know you can't stop her vision loss without a cure, but some how we do think on some level that Finley will be spared.  Silly, really. 

So - we are where we are.  We got some new suggestions for school to help her, and I shared with the school.  I am meeting with her Teacher of the Vision Impaired next Tuesday and we are going to talk technology.  And we keep on keeping on.  Finley is happy and healthy.  She still has very good vision for a kid with LCA.  Things could be a lot worse, so we count our blessings.

The picture above was taken of us this past Sunday.  We hardly ever take a picture of our family, so it was nice to do so.  We were dressed still from church, so we looked half decent.


Anonymous said...



I appriciate this update. I know it's just life that happens to us all, and I shouldn't pitty you, but I am sorry more of her vision is gone. I will keep praying for a cure to happen soon!


your family photo is so peaceful

Anonymous said...

you are my hero Finley girl!

I am your friend and I care about you because you are such a brave little girl!

Stay strong
God loves you

your friend,

Anonymous said...


May you all have a happy and blessed Easter this year!