Tuesday, December 15, 2015

Finley's Vision Field Test

Well - another vision field appointment is on the books. This is the 6th year we are seeing Dr. Mayer at Perkins. As Finley sat down in the vision field testing seat, I pictured that little 3 year old girl who was so tiny in that big chair. I would love to say that this year's appointment showed stability in her vision, but I cannot. She has had a significant change in her vision fields, which matches some of the concerns we were having with her. Last year she had a 70% peripheral field, and this year it is 50%. Her scatoma (like that word? That is the black areas where she sees nothing) has gotten larger in both eyes and more dense. (she used to have more a "swiss cheese" vision). Today she even tested her with both eyes open and her fields have shrunk in her overall daily vision. (because who sees one eye at a time - that is why she does this). Her acuity has decreased. Her contrast vision has decreased, so she needs more light, more contrast. Except with her type of LCA, more light means more vision loss. The doctor was dismayed. More than I have ever seen her. She sighed heavily, and told me she wish she had better news, but as we all know with LCA, this is what is going to happen. The older she gets, the more vision that disappears. This was the first time I really had to hold it together in the doctor's office. After 6 years, we have watched her lose her vision. But this was the most she has lost in one year, so it was hard. CURE. NOW.

I had Dr. Mayer copy her "plots" for me today. Usually these would be in pretty colors (she color codes the different dot size, so bare with me). So - the outside ring - that is where Finley can see the largest light dot she uses (a little smaller than a quarter). Last year that line was at the 70 - now it is at the 50). The next line is where she can see a medium size light dot (about the size of a dime). That line is between the 40 and 30. And then the last line (which is right by the 30) is where she can see the smallest light - which is about the size of a tac. The middle section there - where you see she kind of shaded it in with black lines? That is where she sees nothing at all. And the area with the dots? She is pretty sure she doesn't see anything there either. All of this has changed from last year.

This is the right eye. This actually made the doctor more upset than the left because her right eye has always been better off than her left. Same thing as the last picture with the lines. The shaded areas and dotted areas are where she sees nothing at all.

This is what she can see now with both eyes open. So when she is looking straight ahead (just like you are right now), Her fields are below 70 with both eyes open (last year they were above 80 with both eyes open). And in the center - the dotted and lined areas - that is where she doesn't see anything.

Tuesday, December 8, 2015

Christmas Take 1

Because we will be in Hawaii over the Christmas holiday this year, our families have been nice enough to visit us throughout this month so we can spend time with them.  This past weekend was Mat's family who came and visited.  Mat's parents and one of my nieces, R, were here, and we had a great time.  I actually prefer small gatherings to large, loud get togethers.  Not that I don't love those from time to time, but it is nice to spend time with those you love in a small, quaint setting as well.

This past weekend was also Arlington's middle school musical (they did Seussical The Musical).  She was excited to have family there (besides us) to watch her.  It was a lot of fun and the musical was GREAT.

We went out to breakfast, opened some presents, and the kids got to play with their cousin.  We ate pie and had a Christmas dinner, and drank hot chocolate.

Enjoy the pictures from our weekend.  Sorry that they are not great quality.  My camera decided it was time to move on, so now we are in the process of buying another.

Arlington ready to leave for the musical
 Finley and I attended the musical together Friday night.  She loved it so much we went all three days
 My niece with us at the show Saturday night.  The flash was a little bright.....
 The set of the show.  It was quite fantastic.  Made by high school students
 Opening presents from Gramma and Pappy

 Having Christmas dinner.  No one cared that I was taking their picture

 Finley got a Roominate kit from Aunt Betty.  She built it all on her own and got it working.  She was pretty proud.