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the eric update - day 1466: odin's eyesight improving, but a lack of clarity remains.

odin had his follow-up exam at the mayo clinic to assess any damage related to his vitreous hemorrhage and the good news is his eyesight continues to improve and his "distance vision" in his right eye is about the same as his left eye ( he has a patch over his "bad" eye in this photo ).

but they couldn't really determine the extent of any "microdamage" to his retina, because they couldn't get a good long look at the back of his eye ( he is a squirmy 4 year old afterall ).

even though he can see out of his eye, there's a 10% chance that he's suffered some sort of undetected damage that could require surgery so we've scheduled an exam under anesthesia on tuesday.

update: ooops - in my tiredness i forgot to mention that in addition to needing to assess any "microdamage" which may or may not necessitate surgery, we still haven't heard much of a satisfactory response as to why this happened and what might need to be done to prevent it from happening again.

to get those answers we think we'll probably need to have odin see someone far more specialized than even the mayo retinal specialist - someone who deals only or mostly only with pediatric complications due to retinopathy of prematurity. even though he can see and even though his retina doesn't appear to have detached, the "jelly" in his eye is presumably pulling or tugging the retina from its normal position which is what caused the hemorrhage. so, fixing the underlying, suspect problem that might require a surgery known as a vitrectomy.

there's a very short list of doctors qualified to assess whether or not odin needs a vitrectomy and we're playing a waiting game to see if and how soon we could see one of them. if we can do that soon, we'll ditch the mayo and head off for a long-ish adventure where we'll get everything (hopefully) taken care of at once by the same doctor.

update - 09.10.08: kris gets super mega bonus points for spending the day calmly escalating the issue up to the director of referral approvals ( for lack of a better term ) who apparently is the only person in a long chain of minions at our insurance company who understands that a 4 year old with a a history of ROP and a vitreous hemorrhage needs to be seen by a pediatric retinal specialist, not a plain-vanilla retinal specialist and certainly not a pediatric opthamologist, even if they are with the esteemed mayo clinic. hurray!

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7/08/2008 11:42:00 PM 4 comments


You won't see us, but we'll be there rooting for Odin and the doctors and you.

By Anonymous Anonymous, at 12:43 AM  

thanks - jeez - i left out an important part of the story in my haste last night. see the update above. we're playing an insurance referral waiting game, the results of which may drastically change our plans.

By Blogger e3, at 9:22 PM  

Please call Kenneth Wright in Los Angles on San Vicente. He is THE rop specialist in the US who got all nicu protocol changed nationally etc. He will give you the referral to the specialist that we saw when my preemie's eye was suspected of the same thing (she's fine). I can't remember his name, but he is IT.

By Anonymous Anonymous, at 12:53 AM  

I was wondering how Kris was doing through this all. She is one amazing Mom!

By Blogger tiffany, at 12:17 AM  

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"it is hard to be brave," said piglet, sniffing slightly, "when you're only a Very Small Animal." rabbit, who had begun to write very busily, looked up and said: "it is because you are a very small animal that you will be Useful in the adventure before us."

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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.

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