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the eric update - day 499: legally blind?

some might recall that six months ago after odin's last follow-up exam to keep track of any lingering effects from his retinopathy of prematurity that we discovered that he had started to show signs of nearsightedness.

and six months later it appears that his vision has continued to degrade and while he certainly still has sight, it's now entirely possible that he could be categorized as legally blind in both eyes with a prescription strength of -5.0 ( i can't remember exactly what visual acuity value that prescription corresponds to, but i believe it's worse than 20/200 - maybe somebody can correct me on that ).

as you can see, it's getting more and more difficult to accurately measure his vision since he's much more vocal about his displeasure with the dilation drops and bright lights being shone in his eyes so it's possibly that his vision isn't quite as bad as we might believe but at this point we're just going to assume that he'll require some form of corrective measures much sooner than later.

more positively his peripheral vision is "good" which is encouraging since it's not uncommon to completely lose the capability as a consequence of ROP induced damage to the retina and from the ROP surgery itself. and his retina also appears to be "on center" and not gradually being pulled to the side due to a complicated effect from the ROP scar tissue and the developing eye. if it were to begin being pulled off center odin might have to learn to live with people constantly wondering why he wasn't looking at them when they were talking, even though he was, in fact, looking right them.

i know some people were really hoping that odin's eyes would just get better, but we've been aware that this was a possible outcome and i'm sure odin will overcome whatever challenges result from his changing eyesight, even if it gets much worse which is more likely than not.

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11/15/2005 11:34:00 PM 11 comments

11 Comments:

Very very best wishes to you.

By Anonymous Anonymous, at 5:20 PM  

Oh, that's so sad. Best of luck to you and Odin, who, if history is any indicator, will cope remarkably well, regardless of what his vision ends up being.

Also, did you mean that his vision is -5.0? -0.5 is legal to drive without correction

By Anonymous Anonymous, at 9:08 PM  

Oh, man. Let's cross our fingers -- medical technology advances fast, maybe it will get to the point where there's some fantastic procedure or device to help Odin soon.

By Blogger Lisa, at 1:00 AM  

oh, man, guys. I don't even know what to say. Best wishes, and I'm sure you will all adapt as best you can.

By Blogger Sarah, at 8:45 AM  

Just remember all the bumps in the road you've faced already! Odin is an adorable little guy and "blind" or not he's here, alive and healthy! Best of all he has wonderful parents who love him unconditionaly and will support him for the rest of his life!!!

By Anonymous Anonymous, at 8:20 PM  

Wow. That is a hard one - I really hope it all works out. I agree though - at least you've got him and he's alive and happy and obviously smart and SO cute. And glasses aren't that bad... take it from someone who got them when they were four (and glasses for kids were much less cute back then). Do they have any eye exercises they recommend? Hang in there - and hopefully it will be easier to tell the real story once he can tell you what he can and can't see... Best of luck! Cari C

By Anonymous Anonymous, at 10:27 PM  

I worked with a woman in her 50s who had this condition. She was able to see peripherally and would tell new people when a conversation began. People were fine with it (I was used to it after a day and honestly never noticed), and it did not slow her down. She had a MA and was working on her PhD and it did not slow her down. I hope that gives you some hope. :-)

By Anonymous Anonymous, at 3:16 AM  

Well, I have been so amazed at Odin and his achievements since his early arrival that it only stands to reason that at some point he may have some adversity.

Although tough to think of the little guy struggling a bit with the eyesight I still think he is going to be a grand person and won't let this get in his way of being who he wants to be.

You and Chris and your own faith in him won't allow for Odin to feel this is a hinderence. It is just part of Odin's state of being and part of what makes him Odin. Odin, who because of his wonderful dad sharing him with us, has already won over most of the world with his charms and spirit.

Odin, I am sure, will adapt and be creative in his abilities to overcome any vision deficit. He is learning well from his parents to be a very positive and confident person in his endeavors of life.

I, for one, think Odin has already proved his tenacity for life.

toodles

Heather in Halifax

By Anonymous Anonymous, at 5:43 AM  

Being legally blind is not the end of the world. My husband was legally blind until he was 30, when he had lasik. My mother in law told me he story of when he got his first pair of glasses at age 3. His first words were "The tree has lots of little leaves?!". He apparently thought the leaves were very large blobs.

Be glad you know about it this early. Knowledge is power, and even if he has to wait til he's older for something that will correct it more than glasses, you will be able to help him work around it. Even if he has to wear coke bottles as a young kid, there's a pretty decent chance he can wear contacts during high school, like my husband did 15 years ago.

My mother in law devised some special coordination improving games to help my husband after they found out his sight was so bad. By the time he was 5, he was able to throw and catch as well as the other little boys and not be embarassed by his previous lack of coordination. I don't think it was the games so much as my mother in law being so dedicated that made the difference. And with that said, I think Odin will cope with this just fine.

By Anonymous Anonymous, at 11:41 PM  

thanks everyone for your supportive and gracious comments! i didn't plan on being away from power and internet access for so long after writing this and i apologize to all the friends and family who have either commented or written emails and wondered why we've been so uncharacteristically incommunicado ( more on that soon ) :-)

i wrote a longish comment here that might be of interest to most everyone reading comments here.

anonymous: "Also, did you mean that his vision is -5.0? -0.5 is legal to drive without correction"

you get the eagle eye award :-) i wrote the original post quickly in incorrectly typed 0.5 when i meant 5.0 which is quite a big difference inceed. i'm corrected it, but i'm surprised that it didn't confuse more people since 0.5 would have been an improvement over his prior eye exam.

cari c: "Do they have any eye exercises they recommend?"

we haven't really discussed any exercises or therapeutic options yet. unless we see that his vision loss is greatly impacting his daily life, i think odin's opthamologist wants to wait until his next exam in 6 months to get a better idea of how things are developing. at this stage, he's not particularly concerned with "simple" myopia even if his eyes get to -9 or -10. but he'll be much more aggressive if one eye appears to be "worse" than the other. it's important to note that not all doctors would treat early nearsightedness this way and many would recommend at least practicing with corrective lenses even for mild myopia.

anonymous: "She had a MA and was working on her PhD and it did not slow her down. I hope that gives you some hope. :-)"

it does - thanks! obviously we hope that odin's sight gets better or at least doesn't get much worse. but it's hard to wail and bemoan the possibility of severe vision loss ( and even blindness ) when so many micropreemies have proven and continue to prove that it's not the end of the world.


anonymous: "Odin, who because of his wonderful dad sharing him with us, has already won over most of the world with his charms and spirit."

thank you for taking the time to leave such a nice comment.

anon: "His first words were "The tree has lots of little leaves?!". He apparently thought the leaves were very large blobs."

ha! that was one of the very first things i thought when i got glasses for the first time at a very early age ( 6, i think ). i also didn't like so clearly seeing all the "imperfections" in people's faces :-)

By Blogger e3, at 9:07 PM  

Hello, how is everyone today. I underatnade how you feel in a way because my vision is -8.00 as of Jan. 2006 when Nov. 2004 it was just -6.75 in one eye and -7.50 in the other. So things are degressing very rapidly. MY eye doctor can't even tell me how that converts into visual acuity becuase it is so bad. I wear contacts but without them I can't make out anything from even as little as a foot away. I am having a baby soon and want some correction as to what to do about getting it fixed. I don't think that glasses would even be as helpful anymore, b/c even with my contacts things are still fuzzy at times. Good luck to you and Odin though.

By Anonymous Anonymous, at 10:06 AM  

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this site chronicles the continuing adventures of my son, odin, who was unexpectedly born on the fourth of july at 25 weeks gestation, weighing 1 pound 7 ounces.

he's quite a fighter and you can always send him a postcard to the most current address listed here if you're inspired by his adventures. see the postcard project/google maps mashup to see a map of the postcards.

if you're new, you can browse the archives to catch up. and don't forget to watch a few movies that i made while we were in the neonatal intensive care unit. or if you want the abridged version and you can find a copy, you can read about his adventures in the november 2005 issue of parents magazine.



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