Tuesday, August 11, 2015

Finley's Visit to the Retinal Specialist

At the end of July - Finley had her visit to the retinal specialist.  We haven't been for 2 years because the doctor did not feel it was necessary to torture her more often than that.  Since there is nothing to be done with what is happening to her right now, all it does is give us grief and very little news.  So we are grateful we don't have to go every 6 months any more.

This appointment is always very long.  Finley was a trooper.  We were there for 6 1/2 hours, and we got a lot accomplished.  They did an ERG (Electroretinalgram) on her, which is always a painful experience.  They put electrodes in her eye to measure how much light bounces off her retina.  She had to have eye drops places several times in her eyes to help them dilate.  She had a color test, a general vision exam, a night blindness exam.  Thankfully we got to skip the vision field test since she just had that a few months ago, or our day would have been even longer.

The results were good.  Well - good is not the right word.  Stable.  She was stable.  Not much has changed in the last two years for her visually, which is good.  Yes, she has lost more of her central vision, but not an extreme amount.  Her acuity isn't great, but it isn't worse.  She remains about 20/100 in both eyes with her glasses on, which is actually really good for a patient with LCA.

Her color vision hasn't decreased much.  No she can't see the very light colors any more, but she can still differentiate between colors pretty well.  Night blindness has remained minimal.  She still has some reaction to light when it bounces off her retina.

Of course - the inevitable will still happen, which the doctor so politely reminded me.  Without a cure, Finley will go blind.  The statement that always makes me catch my breath no matter how many times I hear it.  I look at her and think "it will happen to someone else".  It is hard to imagine that one day Finley won't see me any more.  That she won't see anything anymore.  It stops me in my tracks.

And then I get angry.  I get angry because there isn't anything I can do about it.  I want to call the researcher and scream in her ear to hurry up.  I want to scream from the roof tops that we don't have any more time.  We need more money, we need faster research.  We need, we need, we need.

I have never been a patient person.  6 years of waiting has about killed me.  And I know the waiting isn't done.  I go around and around with Mat about why we aren't doing more.  Why aren't we there yet?  And his answer is that this is just what it takes.

We still need more.  More of everything.  I don't want to go back to the retinal doctor in two years.  I want this to be OVER.  I don't want to order another cane.  I want to throw them away.  I don't want her to lose another summer to braille instruction 3 times a week.  I want her to read print like all of her friends.

And Finley is frightened.  She tells me she doesn't think a cure will come in time.  She is afraid of going blind.  She doesn't understand why this is happening to her.

We are lost.

The only thing that keeps me going is the support we have.  Knowing that in a week at our next fundraiser, we will again be reminded that we don't walk this path alone.  That we have so many people that will be there to pick us up when we feel helpless.

If you want to join us - please do.  If you are near Connellsville PA on the 22nd of August - we would love to see you.  9am Yough Park - check out


if you want to come and see us!

2 comments:

Shayla McCartney said...

God is with you and I am still praying for the doctors that they find a cure for rdh12
I am very sorry finley is scared... It is not a misunderstanding as to why, it scares me that little kids have vision problems and it is hard to find a steady path to fixing those things I wish I knew what to say to offer some support... I really like your family, from all the years I have read this blog and read all the adventures and life events, some good some not so good, but they are a journey nonetheless of a family that is strong, strong for their kids and supportive and determined I think you have inspired me by the circumstances of your journey and things don't make a lot of sense now, but maybe someday, soon it will! One thing I do believe is I've heard this from a mom that has a blind daughter she lives in a few towns away from my house, her name is Gabby and her daughters name Is Ginger ( my friend ) :-) well one time I asked gabby how did Ginger loose her vision? Gabby's answer: from a toumor behind her optic nerves in her brain this made me a little sad, so my next question was: why did that happen to her? She said God chooses the circumstances that he thinks are best for each one of us, and she said I think he doesn't take one thing away without putting something there that's a gift that's better in the taken away thing that's a lot better :)

something better will take the place of what was lost I know that sounds dumb but something good will come out of this I hope it's a cure!

God bless friends!
P.s. My mail adress is
Po box 377
Willow, Alaska
99688

it would be cool to write to your family and the kids :)

Shayla McCartney said...

Finley--- u are a brave girl :)