Wednesday, February 8, 2012

A Finley update and a request

Yesterday we took Finley to her vision field test appointment.  This is one of my favorite appointments we have to endure with her because we get a lot of information.  Plus, the doctor is beyond FANTASTIC.  I am going to be so sad when she retires (which unfortunately is going to be soon) because she will will be irreplaceable.  She is that good.

This test is at the Perkins School for the blind.  That have this amazing Low Vision Clinic.  Finley's teacher for the vision impaired (TVI) went with us as well.  Finley adores her and was excited to see her outside of school. 

The test lasted about 2 1/2 hours.  Finley was a trooper.  She stuck with all the tests until the very end and was rewarded with stickers from her TVI and a heart shaped doughnut from her mother.

What the test showed was that things are still doing pretty well.  There have been some changes, yes.  Those are to be expected, but they weren't huge changes, so we are focusing on that.  The doctor has the ability to do the one test on the computer, so the background is nice and bright and the letters nice and dark, so she was able to read the 20/80 line with the right eye!  That was great.  Her left eye was about 20/150.  This is the first time we have seen a discrepancy with the eyes, but actually most of our other RDH12 kiddos in our group do have a discrepancy between their eyes.  Finley just never has.

I do have to say that for her to see that 20/80 line, she really had to turn her head to the side and look out of her very peripheral vision (where her vision remains the best).  She almost fell out of her chair trying to see it.  But it is there!!  That vision is there.  As you know, 20/20 is normal, 20/40 is about normal for Kindergarteners, so she isn't too far off, considering her diagnosis.

Her contrast vision isn't terrible either.  As long as the letters were large-  like around 20/600 size, she could see it even pretty light.  Smaller - not so much.  Finley has always struggled with light colors like yellow and pink.  And color vision is something that will probably go next, according to the vision field specialist.  When that will be, we have no idea.  It could be a long time into the future.  But with retinal degenerations, the color goes before all the vision goes.

The changes came in the amount of vision she is actually missing.  Her dark spot has grown larger.  From what the vision field specialist could tell, she has a tiny bit of central vision - right in the very center.  then there is a black area, and then she has some vision, and then her very best vision is far out in the edge of her peripheral fields.  So she has a doughnut shaped black hole in her vision.  That makes it really hard for her to see. 

And it also makes it very hard when it comes to reading.  Right now the TVI has enlarged everything to a 36 point for her based on her pervious vision field test (a year ago).  Now the vision field specialist wants us to shrink it down to 24 point so that she gets more of the words on the page in her field that she has.  If we make the words too big, she can't take the information in, and it will hinder her ability to read.  also, the words on the page need to be spread out a bit more so that she has a better chance of making sense of what she is reading.

We are at a cross roads at this point.  We are holding out that our cure for RDH12 is just a few years away and we will just move along as best as we can until then.  If the cure was not to become a reality, Finley would become strictly a braille reader.  This "trying to find a sweet spot to see" thing is going to get old quick.  And as her sweet spot shrinks, reading is going to be impossible for her.  We are almost there.  We just need things to be stable just a little longer until we have a better idea on what is happening with the RDH12 research.  We don't want her to be strictly a braille reader if she is going to get to keep her vision, and possibly gain some back.  But we don't want her to struggle either.

So for now, I am letting the TVI handle the school stuff, and just going with the flow.  This is not my favorite place to be.  I like to feel like we have control.  But this I cannot control, and I don't know what to do.  So - I am going to let someone else take the stress for awhile.

Today Finley had to have a blood draw and she was not happy about it.  I felt so bad for her because she had to get stuck 3 times before they got the blood.  By the last time she was completely flipping out and it took 3 of us to hold her still.  She looked at me and BEGGED me to tell them to stop.  Even being a pediatric nurse for 15 years, I had a hard time holding it together when she did that.  She refused to bend her arms the whole way home.

She got a big present when she was done.  I had ordered her a Monster high doll she has really been wanting and I was keeping it for something special.  Today was that day.   She hated me a little less - and voluntarily bent her arms - after I gave her that.

Tonight Mat and I are working on a project and we need your help.  As you know, a few weeks ago, we entered a contest on R.A.R.E. projects website to write a children's book about our child's rare disease.  Mat and Finley worked on it together and we entered it.  The winner gets money (yay) that we plan to put toward our charity.

Anyway - all the finalist got a video camera (this thing is sweet, and we get to keep it).  We are to make a video to go along our book.  It has to be original, and deal with what our book is about.  We only have 2 weeks to make it.  We have some ideas, but we want to hear from you.  We need to stand out so that we can be the winners!  We have a great story to tell, but we need to make sure we really "work it" so we can win the contest.

So - if you have any ideas you want to share that we can use to make our video, we want to know!  You can leave a comment here, or you can email us.  Thanks for your help!

1 comment:

jennohara said...

Wow, what an awesome appointment to have done. I wish Hanna could have a field test done. As far as we know about her vision, is that she has nothing in the left, and only peripheral (towards her nose) on her right. Thats only going by her newborn tests and watching her play. Shes been so traumatized as an infant, she doesnt let anyone near her eyes, so it's very hard to get an evaluation done.
I think its great that you can sit back and watch someone else kind of "deal" with the stress. :) I know, it would be hard to do...but take it! The book sounds so exciting! I wish I had some ideas for you....Ill keep it in mind!