Of all the days of the week Monday's are my least favorite by FAR. However, I've been fretting this particular Monday for almost two weeks now.
Firstly it is the deadline I had given my health insurance company on getting Averie's prior authorization approved. I was being patient but I have slowly been losing that battle. My mind has started racing, full of what if this test only brings us more questions. I think that's my biggest fear. My brain is geared to making game plans, and getting things done and moving on. Certainly not waiting. So tomorrow the phone calls and harassing begin. First with my insurance company and then with Children's if need be. Secondly, Monday's always seem to be the busiest at work. I have an onsite on Tuesday that has the potential of being a huge deal if all goes well, but all the prep for it has to be done tomorrow. Lastly, I start my hard core diet on Tuesday, so tomorrow is my last day of eating whatever I want. All three of these things in their own way make me excited, but also nervous at the same time. It's so crazy how 2011 has really turned into one of the most event filled years of my life and it's only January 31st!!!! Feels like an entire year has gone on in the last 31 days of my life.
XOXO,
~A
P.S.
Brie has also been officially moved to her crib, which I have been selfishly putting off until now. It's night three and actually going better than expected. Friday night was AWFUL, Saturday night wasn't bad and tonight she actually acted like she wanted to go to sleep in it... my briebaby is growing up!!!!
P.P.S
i know that i should be capitalized but i actually like lower case i's better... :)~
Sunday, January 30, 2011
Friday, January 14, 2011
Little bit of this and a little bit of that.
This week I haven't been sleeping very good, I find myself remembering situations with Averie that are now very obvious signs of just how much she truly can't see. I remember being at her soccer practice and when they would break for a drink she would kind of wonder aimlessly around, I specifically remember thinking to myself "What is she doing, she looks like she can't see where all the water bottles are lined up." Or when practice was over Aves wouldn't be able to find us, even though we (like seven of us) sat in the same spot the whole game, again I specifically remember thinking "It looks like she is looking right thru me, how does she not see me?" Mollie and I have experienced similar situations seperatly at the grocery store. Where Aves will be looking at something on the shelf and not see us move down the isle maybe four or five feet away and all of a sudden Averie literally starts to panic and starts screaming our names while turning around in circles searching for us, all the while, eeirly looking right thru us.
I know there isn't more I could have done, I know I am doing everything I can now, I still feel terrible. I want to think that I am remembering all of these situations because I am now starting to get answers, and I am not in denial about what this diagnosis means for our future. But I am afraid these memories are going to haunt me (forever). I feel like I know Aves has vision problems but I don't know to what caliber, like I can't relate. I wish there was a way for me to see what she sees to get an idea of what her world is. I am going to make sure to ask the doctor about that. I would imagine there is maybe a pair of glasses I could get that would mock what Aves sees, (kind of like the beer goggles that are out there).
Another one of my late night thoughts was about me getting lasik. I got lasik back in November 2007 and it was mainly for Averie, she was almost one and I did like being unable to see her in the middle of the night without finding my glasses first or haveing to wear my glasses in the pool, or playing softball in the rain with glasses was such a pain. NOW I wish I hadn't had the lasik I know that sounds so stupid but maybe then I could relate...
Ugh, is my favorite onamonapia.
XOXO,
~Annie
I know there isn't more I could have done, I know I am doing everything I can now, I still feel terrible. I want to think that I am remembering all of these situations because I am now starting to get answers, and I am not in denial about what this diagnosis means for our future. But I am afraid these memories are going to haunt me (forever). I feel like I know Aves has vision problems but I don't know to what caliber, like I can't relate. I wish there was a way for me to see what she sees to get an idea of what her world is. I am going to make sure to ask the doctor about that. I would imagine there is maybe a pair of glasses I could get that would mock what Aves sees, (kind of like the beer goggles that are out there).
Another one of my late night thoughts was about me getting lasik. I got lasik back in November 2007 and it was mainly for Averie, she was almost one and I did like being unable to see her in the middle of the night without finding my glasses first or haveing to wear my glasses in the pool, or playing softball in the rain with glasses was such a pain. NOW I wish I hadn't had the lasik I know that sounds so stupid but maybe then I could relate...
Ugh, is my favorite onamonapia.
XOXO,
~Annie
Tuesday, January 11, 2011
"A diploma only proves that you know how to look up answers". Solomon Short
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
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
Sunday, January 9, 2011
The beginning
As a few of you may have heard we received some rather unsettling news on Averie this past week. She has been diagnosed with Optic Nerve Atrophy, which means her optic nerve is weak. We did, however, recently receive results of her MRI back and there are no brain tumors causing her vision loss it did not tell us what is though. For those of you that hadn't heard whats been going on in my new year here it is from the beginning...
In late October we found out Aves was severely near sighted, we got her in glasses. It wasn't really a big deal, everyone in my family wears glasses, (except Uncle PJ) and thought that was the extent of it. Well I hadn't noticed much improvement in her since we've had her in the glasses these past two months and then to confirm my feelings, this past Monday Aves teacher mentioned she too didn't think that Aves glasses were the correct strength. So I made an appointment with her eye doctor; who confirmed Aves vision had changed significantly since being in the glasses which set off red flags and she sent us immediately to a retinal specialist Dr. Berenstain (like Berenstain Bears :) he diagnosed Aves with an abnormal optic nerve and thinning of the retina, and sent us to a Neuro Opthamologist at John Hopkins. This Doctor also confirmed that Aves optic nerve was atrophic. However he doesn't take my health insurance so we are now heading to Children's Hospital to see FITTINGLY Dr. Avery (who does take my insurance) on Tuesday for a game plan.
What we do know isn't easy to talk about so I hope no one is upset I haven't called I literally can't speak I get out two or three words and the tears take OVER. Hence the reason for this blog, it allows me to get things i am thinking out, and also keep all of you who i KNOW care about Aves just as much as I do in the loop.
Right now Aves visual acuity is 20/200, the easiest way to explain this vision is that she can see only at 20 feet what a normal person can see at 200 feet. While the MRI had promising news that there aren't any tumors putting pressure on the optic nerve, it didn't explain her "abnormal optic nerve". I am doing my best to stay positive I know things could be worse but right now I am on major over load and have major highs and lows. I am very thankful that right now Aves is semi-clueless, she knows she can't see any better and its frustrating her, but she knows we are going to these doctors to find out why. Needless to say I have lots of hope that Dr. Avery will be able to give us the answers and explain things in more detail. I promise to keep everyone updated as much as possible.
I will post more once we get back from seeing Dr. Avery!
Hugs and Kisses to everyone THANK you all SO much for your support.
Love, Annie
In late October we found out Aves was severely near sighted, we got her in glasses. It wasn't really a big deal, everyone in my family wears glasses, (except Uncle PJ) and thought that was the extent of it. Well I hadn't noticed much improvement in her since we've had her in the glasses these past two months and then to confirm my feelings, this past Monday Aves teacher mentioned she too didn't think that Aves glasses were the correct strength. So I made an appointment with her eye doctor; who confirmed Aves vision had changed significantly since being in the glasses which set off red flags and she sent us immediately to a retinal specialist Dr. Berenstain (like Berenstain Bears :) he diagnosed Aves with an abnormal optic nerve and thinning of the retina, and sent us to a Neuro Opthamologist at John Hopkins. This Doctor also confirmed that Aves optic nerve was atrophic. However he doesn't take my health insurance so we are now heading to Children's Hospital to see FITTINGLY Dr. Avery (who does take my insurance) on Tuesday for a game plan.
What we do know isn't easy to talk about so I hope no one is upset I haven't called I literally can't speak I get out two or three words and the tears take OVER. Hence the reason for this blog, it allows me to get things i am thinking out, and also keep all of you who i KNOW care about Aves just as much as I do in the loop.
Right now Aves visual acuity is 20/200, the easiest way to explain this vision is that she can see only at 20 feet what a normal person can see at 200 feet. While the MRI had promising news that there aren't any tumors putting pressure on the optic nerve, it didn't explain her "abnormal optic nerve". I am doing my best to stay positive I know things could be worse but right now I am on major over load and have major highs and lows. I am very thankful that right now Aves is semi-clueless, she knows she can't see any better and its frustrating her, but she knows we are going to these doctors to find out why. Needless to say I have lots of hope that Dr. Avery will be able to give us the answers and explain things in more detail. I promise to keep everyone updated as much as possible.
I will post more once we get back from seeing Dr. Avery!
Hugs and Kisses to everyone THANK you all SO much for your support.
Love, Annie
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