Mixed Nuts: To see or not to see

That still remains the question.

Today was Finley's vision field test. I think the appointment went very well. We were at the appointment for 3 hours, and - if the weather had not gotten so bad - would probably have been there longer.

(Finley has a pony tail!!!)

Finley and I left for her appointment at 10:30am. We stopped for gas and lunch and then met her teacher from BESB (Board of Education Services for the Blind) at 11:45. We then drove to right outside Boston (Michelle I was wrong - it was Watertown!) to the Perkins School of the Blind.

Our appointment was at 1:15. The doctor was WONDERFUL. She specializes in vision field tests for kids under the age of 6. How more specific can you get? I love living near a large city. Anyway, we spent the whole 3 hours with her and the head of the program (another doctor). They were intrigued with Finley.

They did several tests, and were very impressed that our 3 1/2 year old was so cooperative and patient. One test took about 45 minutes where the whole time she had to sit in a device kind of like you have when you go to the eye doctors (where you put your chin on the paper and the forehead on the metal piece???) . And she had a patch over one eye. And she had to hit a buzzer every time she saw a light. I was totally impressed with her, but for some reason, she likes putting her chin on this device. She does it at all the eye doctor appointments, and doesn't mind.

She also had to watch some lights in a big dome and point to them when she saw them. This took about 30 minutes. She did great with that too.

And she had a regular vision test - like you would if you went to an eye doctor (except because she is little, they use pictures). And they did some flash cards that got lighter and lighter and she had to tell them what was on them. The did some light following - where she had to follow a light with just her eyes and not move her head. And she had to do some coloring and writing.

So - the results. Well, we won't know anything for sure until we get the official report because I am not that great at remembering 3 hours worth of information.

But - it looks like her peripheral vision is okay as long as she is paying attention. What that means is that she has to really pay attention to her surroundings to see people, objects, etc. peripherally. So, if she is focused on sliding, or climbing, or running and I am doing a dance off to the side - she isn't going to see me.

So - during the peripheral vision test - she was able to catch the dots off to the side, but her eyes and head were always in motion. She knew what she was supposed to find in this test, so she was on alert to find them. They would bring her eyes back to the center, but then when the lights in the center of the tunnel disappeared, that meant that there were lights somewhere else. She was always able to locate them, but Finley is smart. She knew she had to.

Then during the 45 minute test where she had to sit absolutely still, she had to find a light in different areas of a dome around her. They would flash a light, and when she saw it, she would push a button once she saw it. I couldn't believe this held her attention because it was boring to watch. But she loved the button. The doctor told us that NEVER before - in all of her years of practice - has she had a 3 1/2 year old sit to complete the entire test. She was beyond impressed. And for Finley to do it - knowing that she is our maniac child - was kind of unreal.

Anyway - again - she saw everything around her. But - when they got to central vision, she struggled a little. The doctor did think that she probably does have some gaps in her central vision, but not very big ones. So that was good news.

So the bottom line is - her vision is not good, but it may not be "choppy" like we thought. She seems to either 1) have very small or no gaps in her vision or 2)she is SO good at accommodating that at this point, we just can't tell, and she is too young to tell us.

Her vision at her last appointment - last August - was 20/70 (20/20 being perfect vision and 20/60 being about what her vision should be at 3 years old). Today her vision was 20/100 with the vision test they did. The doctor said it isn't very reliable, but if she were to guess, she would say that Finley's vision is somewhere between 20/80 and 20/100. So, her vision is poor. She has blurry vision - which is probably why she stands so close to the TV or so close to books. But still - they don't think that glasses will make a difference or correct anything at this point. I don't completely understand this, and may ask our pediatrician opthamologist why this is. I would think that if it is blurry, then wouldn't they want to make it better? But I guess that even 20/80 or 20/100 at 3 years old isn't that far off from normal, and little kids don't always do well with glasses.

Anyway - she did okay with the cards that got lighter and lighter. It was really bright in the room, so she saw all but the last two - which were REALLY light. They dimmed the lights some, and she had a harder time. This made the doctor think that her night vision is probably going to prove to be low. (That test is at the end of Feb. The fun never ends).

The light test - they shined a little light in her eyes and had her follow it. Finley doesn't look at us in the eye most of the time - she looks off to the side. They saw that her one eye is definitely more dominant (the left) and it leads the other eye. And that is why she doesn't look directly at us. She THINKS she is, but she is looking down and to the left. It is kind of strange. It isn't always, but it is mostly when she is tired, or not trying very hard. This will mostly be a social issue as she ages - she will have to be taught where to put her eyes so she is looking into people's faces.

The writing test proved to be the most interesting to them. Once I told the doctor about her "mirror writing", she was intrigued. So, I gave Finley paper and had her write her name - which she wrote perfectly backward. And fast may I add! So, I drew the "F" correctly, and then had her write the rest - and she fixed her whole name to be correct. This was fascinating to the doctor. She said they do study after study on stuff like this and it is rare. This is not what we were recently told by the preschool and the occupational therapist. We were told this is normal. But the doctor did not agree. She didn't say it was abnormal - just rare. So, then she drew two parallel lines, and wanted Finley to write her name between the lines - writing from top to bottom. I wish I had a picture. she wrote her name BACKWARD AND SIDEWAYS all at once. It was baffling and the doctor was just beside herself with amazement. She kept all of her writing samples and was going to share them with other doctors and work on studying them further. It was kind of interesting. Oh, and even MORE interesting- she gave Finley the letters in her name (puzzle pieces). She mixed them all up, and had Finley use them to make her name. This was the most interesting- Finley put the letters UPSIDE DOWN, and backward - like laid them out as a "mirror" image but upside down.

This seemed to answer a question for the doctor. The doctor thinks she may be seeing things upside down. She couldn't be sure, but it was perfectly upside down. And she did it fast. But then, we put the F on the left hand side and Finley was able to put her name the right way, however it took her a long time to do this.

The vision teacher that works with Finley (that came with us) is well known at Perkins. So it was nice to have her with us. She asked some questions that I would have never thought of. She was able to tell them about her visits with Finley and show them the video she has taken of Finley at the preschool. The doctor told the teacher what she thought should be next in Finley's education from BESB.

The other doctor that was with us specializes in finding ways to improve her function. He thinks Finley needs a definite magnification for when she looks at books and when she watches TV. Apparently they make magnification glasses, but she is a little young for them. But in a few years, they will work perfectly for her to watch TV. And he talked to the teacher about what level of magnification she will need for books. So the teacher will get her that.

That doctor wants to see Finley over the summer to do more work with her and see what other equipment she may benefit from. So we will have to set that appointment up. He asked a ton of questions about how she watches TV and reads books, and colors, etc.

The vision field doctor wants to see Finley again in the fall. I am not sure why, but maybe just to keep up with changes. I am fine with that. She was amazing.

So it was 3 very informative hours. It was also nice because we weren't rushed, and they really heard me. I mean REALLY heard me. All the things that I say over and over that we think are weird and the other doctors nod and say, yes, or we will watch - these folks really listened. And they asked questions and made suggestions. They thought every question I had was worth answering.

I left there with a good feeling. It was worth the day long appointment and our tiredness tonight. Finley was an angel. She listened and cooperated and didn't demand. I couldn't believe it. Well, actually, at most doctor's appointments she is like that. But she is 3, and 3 can STILL be ornery at the worst moments.

So, that is the update. I am sure I have forgotten some things, but when the report comes in, I will update if that is true.

Oh! The doctor did say that she is not sure if Finley's condition is degenerative or dystrophy. Meaning - she doesn't know if it will get worse or stay the same. She read all the reports from the other doctors, and wasn't convinced that it would get worse. She said my favorite line (not) "only time will tell".

So there we are. Now, up next - the night vision test and HOPEFULLY some results from genetics about what LCA gene she has. We have a little more of a wait on that one.