Sabbath, November 12, 2017
Well, today was pretty much spent explaining to people what White Dot Syndrome is. Except I have no clue what it is. Oh, and as church was starting, they asked Rollin to preach and me to translate. Sure.
Spent the afternoon playing with the kids.
Juniper got discharged home!!! (With $700 worth of vaccines. Ouch. We have been spoiled utterly rotten by our pediatrician who is SOOOO kind and understanding, always helping us out with vaccines.)
Sunday, November 13, 2017
Still nothing of news.
Danae is off spending money buying stuff for her return trip. Still all on very good faith she will be able to return soon.
Monday, November 14, 2017
Well, today we got an appointment scheduled with an internal medicine doctor. Which is interesting. Danae has seen a neuro-ophthalmologist and three retinal specialists, in addition to the colleagues they consulted. All of them think the problem is the retina. So remind me again what an internist is going to find? Well, whatever. Nevermind. I suppose I should just be happy they are being so thorough.
Danae and I chat about what lab tests and imagining and whatever else should be done. We come up with an extensive list of labs.
I scrub in to surgery with Rollin with the goal that after a few months I might be capable of doing the simplest of surgeries. Hey, if Danae is going to go blind, somebody needs to be able to work.
And Danae and I continue joking. Really, truly, the most inappropriate jokes. Drool, adult diapers, future spouses… it’s all fair game. It’s how we process and deal. And it’s what makes her perfect for me. God, please let her remain perfect for me for a long, long time.
Tuesday, November 15, 2017
Today Danae saw the Super Duper Retinal Subspecialist. Danae was a little discouraged looking around their waiting room and seeing all the talking phones, talking watches, talking everything. All the gadgets she’ll need when she goes completely blind. They did some fancy tests that apparently can only by done in a couple of places in the area. In fact, it took the specialist and her technician all day long to complete the testing. It was an electroretinogram, kinda like the electroencephalogram things they do attaching all the electrodes to a person’s head to monitor for seizure activity. And while it sounds cool, it also sounds like torture to me. They prop your eye open by inserting a contact lens that holds it open and smear gel on your eye and, well, anyway, I don’t get it entirely, but ophthalmologists are smart folks and retinal specialists are even smarter, so I trust them.
They found the cells on her retina aren’t firing appropriately. The rods, which sense low light, seem to fire. But the cones, which see color in bright light, aren’t firing in the sick part of her retina. So that’s why she can’t see squat in bright light toward the nasal side of her right eye. So it’s just another confirmation that it’s not the scary stuff behind the retina, like the brain and the optic nerve, which could be damaged by multiple sclerosis or strokes or tumors or whatever else.
But there really is no solid diagnosis here. Dunno the cause. Dunno the treatment. Dunno the prognosis. It’s good to be an interesting person. But not an interesting patient. You never really want your doctor to say, ‘Cool! We have no clue what’s going on. Can I present you to all the other doctors at grand rounds?’
So Danae gets a provisional diagnosis of AZOOR. Well, which isn’t really a diagnosis. It’s kinda the leftover diagnosis mishmash grab bag for whatever they can’t figure out. Acute Zonal Occult Outer Retinopathy. There’s not much information on it. And sometimes the retinal cells end up dying permanently. Sometimes it spreads and the patient goes totally blind. And sometimes it gets better on its own. And some consider it to be part of the White Dot Syndromes that somebody diagnosed her with last week. Who knows…
The test goes late. The appointment with the internist will need to be rebooked for Friday. The MRA is scheduled for tomorrow, as is the appointment with the infectious disease and tropical medicine specialist. The GC won’t give us the clearance to rebook Danae’s ticket back to Tchad until everything is completed. They want to make sure she’s gotten the best care possible. As irritated as I am by this, I’m also very grateful my employer takes this seriously and wants the best for us. We’ve really been treated pretty well by everybody at the University of Maryland health system and the General Conference, specifically Dr Landless. But it’s clear now she won’t be coming home this week either.
And through it all, we keep on joking via text. ‘So you’re still not old enough to drive on your own?’ (Mom and Dad had been driving her to all these appointments, since her eyes get dilated.) ‘Can you read this text?’ ‘Still alive?’ ‘What did you want sung at your funeral again?’ And Danae makes fun of me for having giardia again.
And this evening I took the kids outside right before sunset and we scavenged five sticks and I found some red and white paints. We then painted the sticks white and their tips red. And then I put five kids in sunglasses and gave them the sticks and had them pose for pictures. I sent the pictures to Danae about the same time the blind cane I ordered showed up at the house. Like I said, inappropriate.
Well, today was pretty much spent explaining to people what White Dot Syndrome is. Except I have no clue what it is. Oh, and as church was starting, they asked Rollin to preach and me to translate. Sure.
Spent the afternoon playing with the kids.
Juniper got discharged home!!! (With $700 worth of vaccines. Ouch. We have been spoiled utterly rotten by our pediatrician who is SOOOO kind and understanding, always helping us out with vaccines.)
Sunday, November 13, 2017
Still nothing of news.
Danae is off spending money buying stuff for her return trip. Still all on very good faith she will be able to return soon.
Monday, November 14, 2017
Well, today we got an appointment scheduled with an internal medicine doctor. Which is interesting. Danae has seen a neuro-ophthalmologist and three retinal specialists, in addition to the colleagues they consulted. All of them think the problem is the retina. So remind me again what an internist is going to find? Well, whatever. Nevermind. I suppose I should just be happy they are being so thorough.
Danae and I chat about what lab tests and imagining and whatever else should be done. We come up with an extensive list of labs.
I scrub in to surgery with Rollin with the goal that after a few months I might be capable of doing the simplest of surgeries. Hey, if Danae is going to go blind, somebody needs to be able to work.
And Danae and I continue joking. Really, truly, the most inappropriate jokes. Drool, adult diapers, future spouses… it’s all fair game. It’s how we process and deal. And it’s what makes her perfect for me. God, please let her remain perfect for me for a long, long time.
Tuesday, November 15, 2017
Today Danae saw the Super Duper Retinal Subspecialist. Danae was a little discouraged looking around their waiting room and seeing all the talking phones, talking watches, talking everything. All the gadgets she’ll need when she goes completely blind. They did some fancy tests that apparently can only by done in a couple of places in the area. In fact, it took the specialist and her technician all day long to complete the testing. It was an electroretinogram, kinda like the electroencephalogram things they do attaching all the electrodes to a person’s head to monitor for seizure activity. And while it sounds cool, it also sounds like torture to me. They prop your eye open by inserting a contact lens that holds it open and smear gel on your eye and, well, anyway, I don’t get it entirely, but ophthalmologists are smart folks and retinal specialists are even smarter, so I trust them.
They found the cells on her retina aren’t firing appropriately. The rods, which sense low light, seem to fire. But the cones, which see color in bright light, aren’t firing in the sick part of her retina. So that’s why she can’t see squat in bright light toward the nasal side of her right eye. So it’s just another confirmation that it’s not the scary stuff behind the retina, like the brain and the optic nerve, which could be damaged by multiple sclerosis or strokes or tumors or whatever else.
But there really is no solid diagnosis here. Dunno the cause. Dunno the treatment. Dunno the prognosis. It’s good to be an interesting person. But not an interesting patient. You never really want your doctor to say, ‘Cool! We have no clue what’s going on. Can I present you to all the other doctors at grand rounds?’
So Danae gets a provisional diagnosis of AZOOR. Well, which isn’t really a diagnosis. It’s kinda the leftover diagnosis mishmash grab bag for whatever they can’t figure out. Acute Zonal Occult Outer Retinopathy. There’s not much information on it. And sometimes the retinal cells end up dying permanently. Sometimes it spreads and the patient goes totally blind. And sometimes it gets better on its own. And some consider it to be part of the White Dot Syndromes that somebody diagnosed her with last week. Who knows…
The test goes late. The appointment with the internist will need to be rebooked for Friday. The MRA is scheduled for tomorrow, as is the appointment with the infectious disease and tropical medicine specialist. The GC won’t give us the clearance to rebook Danae’s ticket back to Tchad until everything is completed. They want to make sure she’s gotten the best care possible. As irritated as I am by this, I’m also very grateful my employer takes this seriously and wants the best for us. We’ve really been treated pretty well by everybody at the University of Maryland health system and the General Conference, specifically Dr Landless. But it’s clear now she won’t be coming home this week either.
And through it all, we keep on joking via text. ‘So you’re still not old enough to drive on your own?’ (Mom and Dad had been driving her to all these appointments, since her eyes get dilated.) ‘Can you read this text?’ ‘Still alive?’ ‘What did you want sung at your funeral again?’ And Danae makes fun of me for having giardia again.
And this evening I took the kids outside right before sunset and we scavenged five sticks and I found some red and white paints. We then painted the sticks white and their tips red. And then I put five kids in sunglasses and gave them the sticks and had them pose for pictures. I sent the pictures to Danae about the same time the blind cane I ordered showed up at the house. Like I said, inappropriate.
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