tim_pratt (![[info]](http://p-stat.livejournal.com/img/userinfo.gif){kind=small} tim_pratt) wrote,@ 2008-03-02 21:05:00 |
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Heather posted about this, and then posted further details, so I won't go over it all again here. The short form is, our son has congenital infantile glaucoma. It's rather rare. We caught it early, so damage to his sight should be minimal or even nil, though we won't really know until he's able to talk, and tell us; all they can test in kids this young is whether the eyes respond to light and whether they can follow objects, and River does fine on both of those. He can obviously still see our faces, though the doctors say the swelling in his eyes bends the lens such that he's probably very nearsighted.
Glaucoma's incurable, but manageable with surgery and medication. We've got him on beta blocker eye drops to manage the condition for a few days. He goes in for surgery on Wednesday. Best case scenario, he has a couple of surgeries, and he'll be good for years. 80% of cases respond very well to the initial surgeries. If we fall into the other 20%... Well. I won't go borrowing trouble.
Our pediatrician had never seen a case of infantile glaucoma. Neither had the other pediatrician she'd consulted with. Neither had the pediatric opthamologist. Sometimes it sucks to be special. Our insurance referred us out-of-network since they had no one who could do the surgery (one guy knew how, but didn't have the equipment. It would have taken him a week to get it... and River can't wait a week). So we're at the Glaucoma Center in San Francisco, which seems top-notch, and has two pediatric specialists. At least we're in good hands.
This pretty much solves my ongoing problem about deciding what charity to donate money to, with so many worthy causes in need of support. Glaucoma research it is.
And, yes, I'm periodically freaking out. The word "incurable" isn't something you want to hear in relation to your kid. The possibility of going blind will hang over him for the rest of his life. Every waiting room he's in is full of old people. He's the only kid there. It sucks profoundly.
Other than that, Mrs. Lincoln, how was the play?
Life continues. We're moving this week. Furiously packing boxes. Got our keys to the new place on Saturday. Took over some breakables we don't want the movers to toss around today. I sat out on the balcony for a few minutes and looked at the lake, and that made me feel better. I think moving to a place with a lake view was a good investment in my mental health. (Yes, I know, white people like living by the water; at least I don't like modern furniture, bottled water, or co-ed sports, so I'm not utterly a type.)
Writing has come to a crashing halt, of course. (Fiction, anyway. Anything that involves emotional investment. Working on non-fiction is a welcome distraction.)
