1/11/2011, what a date.
So, we are back form Childrens and I am doing better than I thought I would be. I think I had researched ONA enough over the last four days that I wasn't surprised by anything Dr. Avery had to say... So what Dr. Avery did have to say is this; pending a Genetic blood test, (that i need preauthorization from my health insurance for), Dr. Avery believes Aves has Kjer's Optic Nerve Atrophy. This is a genetic disease that currently there is no effective therapy for. Aves will never see any better than she sees right now, she will never drive a car, (unless, like my Dad and Mollie pointed out, something COULD change in medicine before she is even eligible to drive in 12+ years). So on a positive note, while her vision wont ever get any better, it also shouldn't get any worse. Which makes me thankful that we did catch this when she was 4 and not 14. How she sees things now, is how she will always see things... so her "normal" is what it is.
Of course I am still taking it all in, but I can already feel my mood shifting from sorrow to preditorial for lack of a better description (I am the mama bear, and she is my cub). I feel like I had educated myself well going into this appointment and I am going to keep educating myself. Aves will be closely monitored for changes in her vision and in the meantime I will be researching what our next step is, to make sure Aves continues to be mainstreamed and not fall behind or more importantly ever feel left behind because of this diagnosis.
I would like to THANK ALL of you who commented, text messaged, facebooked, or emailed me, or my family. It meant SO much to hear all your kind words. I do plan on continuing to post on here... I'm not much of a writter but this has really helped me focus my thoughts which has seriously enabled me to function.
Love you all,
XOXO
~A
Hey girl... I talked to Joe a couple days ago and he told me the news.My heart breaks for her (and your whole family) but as I told Joe. I remain positive that you are a wonderful mother and this is only a small stepping stone in her life. She is the cutest damn thing,and about as effervescent a child as I have ever seen. I have a feeling her eyesight will not get in the way of her accomplishing many great things in the future.
ReplyDeleteLet me know if you ever need anything. Softball season or not! Haha
Thanks for the update. I knew you all had the appointment yesterday so I must have checked the blog a million times before bed :) I'll call you later but if you don't feel like talking just let it roll to voicemail and I'll e-mail you. Love you guys!
ReplyDeleteThanks for letting us know, Annie. That Averie's vision not getting worse is very good news indeed.
ReplyDeleteQuestion: Can she see well enough now to read?
I'm keeping all you in my prayers.
With love,
Michael
Hi Michael, I can answer that. Right now, since Averie can't read, we have hopes that she will be able to, but will need large print books, or a thing (not sure what it is) like the Kindle. She will be learning braille, but Annie is checking into that. But she sure loves stories. I have to read or make-up at least 2-4 stories every night when she sleeps over, so that, in itself, is a great thing. She is amazing, as you will find out when we visit in April. The love of my life.
ReplyDelete