Finney-mato

For those of you who don't know us very well - Finney-mato or Finn-mato is our nickname for Finley. This was because when she was first born and cried, she turned as red as tomato every time. So Arlington nicknamed her tomato, and that grew into Finn-mato. A little piece of history. Aren't you glad I give you knowledge when you read my blog?

Today's entry is an extra special one. You should feel very special, because JUST yesterday I said I wouldn't be back until Saturday. I like to see who is paying attention to me at all. I know I barely pay attention to me, so I don't expect many of you do either.

Anyway - in all seriousness........

Today was Finley's eye appointment with Dr. Miracle in Boston. We got to meet the Great Dr. Anne Fulton (Mat thought I should put her real name on here to give her credit) today. Our appointment in Boston was at 2pm, and we were seen right at 2pm. When does that ever happen? I loved her already for being on time.

The staff was really great. We first saw another doctor who ran through her history, did a very throughough eye exam, and put the dreaded eye drops in her eyes. This is Finley's 3rd time getting those drops in one month, and now she really squirms to get away. She hates anything near her eyes, so this is never a pleasant experience.

But the doctor is experienced with squirming 3 year olds who refuse to open their eyes, and in went the drops.

We had to wait 30 minutes for the drops to work, and during that time Finley played in the waiting room, and I talked to the surgery coordinator about her ERG and also to Dr. Miracle's (I am sticking with that) assistant to schedule her night vision test. That passed the time. By the way - just a reminder - her ERG under anesthesia is October 1st, and the night vision test will be February 24th.

After the dialation began to work, Finley had pictures taken of her retina, and a test to see if she needed glasses. Her visiton is 20/70 in both eyes, and for her age, Dr. Miracle does not believe that she needs glasses. She doesn't think they will help (just like every other doctor) so that is a non-issue at this point.

By the way - Dr. Miracle is wonderful. She has been in practice a long time. She was sweet and warm, and very soft spoken. She was great with Finley and very willing to sit and talk with us. She never rushed - she spent more than an hour with us. It was worth every minute. We are used to these "high powered doctors" who give us 10 minutes and say, "see you next year". But she wasn't like that at all.

She talks to us about the pictures. You can very clearly see on Finley's retina the damage that is there. There is a dark area and the retina is flat - two things that are not in a normal eye. The doctor was very vague on her guess on what it might be. Mostly because at this early stage - it could be just about anything. She said if she had to give her best guess, she would say Finley had LCA - Leber's Congential Amaurosis. (click on words to read more about this disease). But even the great Dr. Miracle was skeptical of this diagnosis, because Finley doesn't have many of the characteristics of this disease. Plus, it is the most common disease in childhood sight problems, and the range varies from what Finley has now, to complete blindness and everywhere in between. It can be progressive, or stationary. It won't get better - that is for sure - but there is a chance it won't get worse. That was nice to hear.

She also saw some positive signs - that her blood vessels in her eyes were NOT narrow - like the one doctor thought. She said that could be because she is young and that symptom has not yet happened, or that it never will (very vague, right??). Also, the sight of the optic nerve was very oxygenated, and her sight is still very good.

It is unclear if she has central vision. Most of the test showed us no. I thought she probably didn't have much peripheral vision, but it is looking more like the central vision is what she doesn't have.

Now - one thing about LCA that I think Finley does have the characteristic is - the deep sunken eyes. I have always said she looks like a little old man with no teeth because her eyes are so deeply set. There is another part - something that SOME children have with LCA which is a cornea problem called Keratoconus. The interesting part of that is - she has an uncle who has this disease. Hmm.......

Anyway, after we reviewed the pictures and Mat asked her about 1000 genetic questions, we had to have her blood drawn for genetic testing. That was not pleasant at all. She was so good during the whole appointment, but completely flipped with this. Can you blame her? She favored that arm for a few hours after that blood draw. The genetic tests will be specific to LCA - see if she DOES have that, and possibly what strain she has - if I understand it correctly. But, of course - there is a down side. The results take 6 months to get back from the labe. 6 MONTHS! Mat tells me that this is just due to back log - not that the actual test takes that long.

Once the results are back from that, we may/may not be closer to an answer. Hard to say. I do think they will test Mat and I if her results come back postive for LCA. But they want to wait and see.

We left the appointment at 4:30 - only 2 1/2 hours after it started. Not bad! And we didn't do any waiting during that time - we were busy the entire time.

So, that is where we are. Basically - in the same spot we were before. I don't believe she has LCA, but I could be wrong. I agree with Dr. Miracle that is a long shot diagnosis. She thinks Finley probably has something rare and unusual that might not really have a name. She warned us the process of figuring it out was going to be slow and arduous.

So we wait. October 1st. February 24th. All the time in between. We wait and watch. We are hopeful that maybe this will not progress any further, and even if it does it doesn't lead to total blindness.

Thanks for keeping us in your thoughts today!

Now - I will REALLY see you Saturday.