Finley

We have received some news about our Finley that I wanted to share with all of you. For those of you who don't know us personally, let me back up a little. About a year and a half ago, (or maybe a little longer) we started to notice that Finley seemed to be having trouble with her vision. As a toddler, it was hard to tell, though, if she was just learning or something was wrong. For example, we would notice that she turned her head to one side or the other in order to see things on a page. We would also notice that she would hold books, etc. very close to her face to study them. She stands very close to the TV and I have to remind her about 1 million times to back up.

Finley is also extremely clumsy. She will trip over herself, fall down stairs without a banister, and bump into things all the time. But again, she is just a little kid, and kids can be clumsy.

I had brought these things up to a few pediatricians and eye doctors, but because of her age, we were told that "some kids are just really clumsy". Finley is a little on the tall side for her age, and very thin, so some doctors thought that might be the cause as well.

Last fall, after we were settled in Connecticut, I decided to take Finley to an eye doctor because she was over 2, and not getting any better at looking at books, TV, or walking. BUT, she was LEARNING just fine - recognizing colors, letters, etc. on a page. It was very baffling because she seemed to see just fine, but not at the same time!

The eye doctor we saw took some pictures of her eyes (the inside, of course) and noticed what he saw was thinning of her retina. The retina is the back part of your eye where the light bounces off to give your eyes the message to see the objects in front of you. He wasn't overly concerned with the thinning, but said it was odd because he mostly saw this in premature kids (which Finley wasn't). I asked him what it meant, and he said that she would just need glasses some day. She passed her vision exam, so we were sent on our way. He did say he wanted to follow her yearly, and that was that. He wasn't a pediatric eye doctor, but those are actually hard to find in our area!

I didn't think much of it until I got a call that it was time for Finley to see the eye doctor again. After she spent almost a year getting so bumped and bruised, and not changing the way she looked at objects on a page or watch TV (plus she was almost three a this time) I decided to look for a pediatric opthamologist. Family members had started to notice Finley's unusual way at looking at things, and so did her preschool teachers. But again, she seems to SEE just fine - she recognizes things every where we go - close and far away. It is really odd.

We saw the pediatric opthalmologist on July 27th. For the first time, we had someone who REALLY looked at our girl. They did multiple tests, and really looked at her retina. The doctor said he was glad we continued to persue our hunch that something wasn't right with her sight. He saw the same thing the first eye doctor said - thinning of the retina. But he also saw something else. I guess the retina is supposed to have a small curved part to it right where the light bounces to give vision, and Finley's is not curved. It is flat. He looked and looked and said this was NOT retinopathy of prematurity (obviously) but something more severe than that.

But he wasn't sure what. He was honest and said that what Finley had was rare for a little kid and it was out of his scope of practice. He said that retina disorders are not common enough in children that pediatric opthalmologist don't usually specialize in it.

But at least now we were getting somewhere.

He gave me a name of a doctor who sees both kids and adults with retina disorders. He said we needed a specialist to give us more answers. I called, and by some miracle got an appointent for two days later on the 29th.

This appointment on Wednesday gave us even more answers, and it lasted almost 4 hours. It was a really long day. The doctor was really nice. They determined that she has 20/60 vision in both eyes, which is normal for a 3 year old. She saw the eye chart just fine. Then they looked at her retina. They did several looks and several tests. When all was said and done, we STILL didn't have a diagnosis, but we had what was an educated guess.

Sigh.

Anyway, she has retina degeneration. The doctor seemed to think it was the PROGRESSIVE kind and not the STATIONARY kind, but didn't want to determine that for sure without doing more tests. He said there is no cure (for either kind) and nothing they can do to fix it. He said if it is progressive, then our sweet Finley will eventually lose her sight. How long that will take is anyone's guess. The doctor said she had thinning of the vessels of the eye, macular degeneration, and decrease in pigmentation. All things we are still learning about. What I understand is that the vessels may be able to be widened which would give her a little more time with her sight. The pigmentation, if that is significant, she would probaby receive a diagnosis of retina pigmentosa, which always leads to blindness.

The doctor still doesn't want to pinpoint a diagnosis because he thought we needed to do more testing and see even a more specialized person than himself. So now, we are waiting for our appointment call from Children's of Boston. Big surprise we will end up there. One of the top children's hospitals in the country, I couldn't imagine going anywhere else. The doctor there actually sees children under the age of 6 and specialized in retina problems. Finley has to have another test where she will be put to sleep and they will do an electroretinography (ERG) test on here. You can read about that here (click on the word "here" and it will explain what this test is).

It won't hurt, but because she is little, they want to put her to sleep. The day will be between 4-6 hours and Mat and I will both go with her. This will supposedly give us the diagnosis we are hoping for so that we can more forward.

The retina specialist we saw was very nice and very helpful. He did give us the cold hard fact that Finley is diagnosed NOW as legally blind. She was never be able to be by herself in school. She will always need an assistant to help her. Even if she has the STATIONARY retina degeneration (which I hope that is the case at this point) she doesn't see more than a little bit throught tunnel vision. She will need to possibly learn braille so that she can be more independent in life. She will never drive.

This diagnosis kills us. Our sweet baby with the beautiful blue eyes may have a life of darkness. It makes me want to run out and get every kid movie every made so that she can see them all. Or take her on a trip around the world so that she can see everything now before her vision goes for sure. I can't imagine her not being able to see all the wonderful things this world has to offer.

So we ask for your prayers and thoughts as we get to the bottom of what is going on with our girl. We will know for sure hopefully in the next couple of months (we were told it is REALLY hard to get into Boston Children's program, so we need to be patient) and then we can deal with the outcome.

Mat is a geneticist, so we will be doing some genetic tests on Finley as well. The doctor told us this was definitely genetic, and possible recessive (from both of us). Finley also has a slight heart murmur and a little trouble with her hearing, so the puzzle pieces might start to fit together if something else comes up on the tests.

For now, just be thinking of us. If ANY of you out there in blog world know about retinal disorders in children, know someone who has it, knows someone who knows someone who knows someone, ANYTHING (or you just want to say hi) please leave a comment below. All you have to do to leave a comment is click on the word "comment" and leave one. You don't need to have a blog/account.

What we are praying for is that her sight will not get any worse. That even though she will need assistance and have an usual life, it will be a life with sight. We ask you to pray with us to stop any progression toward totally blindness.