Red-eye reduction

I've been trying to write about the EEG now for a few days, and it's just not coming together. The whole time (all 18 hours) we were in the windowless, clock-less room, we were videotaped, so it felt like we were in a psychology experiment, or about to be the next star of Dateline: Bad Parenting. Either way, we still don't know the results yet.



I had to wear this thing the whole time! If there's an open call for Dr. Seuss, I'm totally in.

Wednesday we went back to the eye doctor. The same technician did the initial assessment as last time. I find it funny what they use to get babies to track things -- this time it was a light up toy from Walt Disney World. Despite it's non-medicalness, it was incredibly effective.

They did the boards again on her to assess some part of her vision. These are long rectangular pieces of cardboard that have a black and white pattern on one half of varying thicknesses -- he flips up the board and using a peephole looks to see if she looks toward the pattern. She sits in my lap when they do this and I feel compelled each time to somehow help her cheat.

When they walked us to the next room for the doctor, I heard him talking to her before she came in. He was saying how he thought that she had another null point at the bottom of her vision and I felt very angry and questioned his aptitude. What do you mean she has another one?! Bogus.

But the doctor came in and looked at her and agreed. And then when it was explained to me I started to see it better myself. When she wants to look at something that is in her hands, or below midline, she will raise her chin and look downward. So instead of bringing her chin down and looking down as you or I would, she pulls her head up and looks down (Matt calls it her "snooty pose"). She seems to get almost complete dampening of the nystagmus when she is at that angle.

I honestly never noticed it as something out of the ordinary because I was just excited any time she didn't have her chin tucked with eyes upward. The doctor explained that it is normal to have two different null points, but one usually is more effective than the other. She demonstrated by holding a tongue depressor with a small sticker (something new and detailed) just below Bug's chin, and sure enough that's the position she adopted to try and see it.

I think that Bug has just recently discovered this bottom one because she is finally strong enough to hold her head at such an angle. And speaking of that angle, because it is "so severe" (she guessed at least 20 or 25 degrees) she will probably have eye surgery by the time she is three to adjust her eye muscles. I asked if it was a complicated surgery, and she said it was complicated only because she would have to adjust two muscles in each eye at once. When the surgery is done for people with a cross eye, for example, it's usually just one muscle and then just one eye.

Stupidly, I asked how she did the surgery -- like do they go in through her eyeball? I say stupidly because the second she started explaining it I felt like passing out. They go through the membrane on the side of your eyeball and adjust from there. She used the big plastic eyeball to explain (I think this is the first time I've ever seen one of those things used for something other than entertainment while waiting for the doctor) and Bug tried to lick it.

She still has the upper null point that we have been seeing for a while, but the strength required for the other one would explain why she adopts the chin down position when she's tired. It makes me feel a little better to think about her eyes upward as just her attempt at seeing us better, versus something being completely wrong with her or because she's having a seizure. There are still those possibilities, but until I know for sure one way or the other I'm just going to go with this to keep me sane for the next few days.

She is also now more convinced that Bug's nystagmus is a result of albinism. The best way to tell is if there are certain types of spots on the retina. She tried to look again in her eyes, but somehow an 18 pound baby is stronger than three adults because we could not pin her down efficiently enough for her to get a good look.

I have to admit, when I think about albinism, this is what I picture:



And I look at her and I think, well thank goodness she doesn't have red eyes (red hair, of course, but we looooooove that about her).

Albinism is a genetic disorder where you do not produce enough melanin. Melanin is what determines the color of your eyes, skin and hair. Per Mayo Clinic, all people with albinism have problems with the development and function of their eyes, since melanin plays a role in the development of certain optical nerves (who knew?). When reading about complications, they consist of "wear sunscreen" and "will probably need glasses." Apparently the worst is the social stigma -- but my gut is that that happens most often in people with dark skin who very clearly do not match their family. There are four or five different 'forms' of albinism. My guess is that IF this turns out to be what the cause of all this is, it might be this:

• Oculocutaneous albinism 2 is caused by a mutation in a gene on chromosome 15. It's more common in Sub-Saharan Africans and African-Americans than in other population groups. The hair may be yellow, auburn, ginger or red, the eyes can be blue-gray or tan, and the skin is white at birth. In people of African descent, the skin may be light brown, and in those of Asian or Northern European descent, the skin is usually white. In either case, the skin color is generally close to the family's coloring, but little bit lighter. With sun exposure, the skin may over time develop freckles, moles or lentigines.

Red hair, blue eyes, milky white skin? Check and check. This also describes the entirety of Matt's family, and pretty much everyone else who has red hair. So hardly conclusive, but right now I gravitate toward anything with a definition.

(Oh, and P.S., apparently the reason for the 'red eyes' is that the lack of pigment can make the irises almost translucent, which means that you can see light reflecting off the back of the eye, making it appear red (just like 'red eye' when you take a picture). There, you've learned something for the next time you watch Jeopardy (4:30, channel 11!)).

Also, did you know? There was an albino sperm whale named "Mocha Dick" (I'm sorry, but that just immediately sends my mind into the gutter) in the 1800s that was the inspiration for Herman Melville's "Moby Dick."

So what's next? We will wait until she's a year to try and see the spots on her retina again. There is no medical treatment or change in treatment if that is what she has, so there's no need to pursue additional testing. The doctor IS going to contact a genetic specialist for us. Seeing as how this is a recessive gene, if it came from us (versus a random mutation) then we might need to take into consideration before having more children. At the very least, Bug needs to be aware (again, IF IF IF this is true) when she has children.

All this makes me think is that God is sending another serious message to me that I should not have had children. As if the lack of boobies wasn't an obvious enough sign to begin with. (I know, I know, I'm obsessed about boobs. So what.) Dramatic? Of course.

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Today we went to Target to pick up her epi-pen. I asked for a consultation with the pharmacist because I have never used one before. She told me that Bug's teachers will all know how to use one (and apparently Matt gets trained each year on them, too).

I try and space out my dumb, obvious questions among the medical professionals that I see on a regular basis. So today Claire (it's sad, but I do know her well, after all we've been through with the formula) got one. "Will it be really obvious when I need to use it?" I ask her.

"Yes, her face will probably swell up and she will stop breathing."
Pause. "Does it usually happen immediately after eating something you're allergic to?" I'm trying to think about how far away to keep that damn thing from the high chair.
"Not always," she says. "When we eat something for the first time there may not be a bad reaction because our body has never seen it before. Sometimes it can be on the second or third time."

Oh, great. So there goes my "if she doesn't die when she eats these [fill in food] for the first time, then we're safe" philosophy.

She tells me there's a practice one in there so I can get a feel for how hard I need to stab her with it. It's like she can read my mind and how I'm thinking about stabbing the baby and making her cry harder, because she throws in, "if you need to use it, she will probably be unconscious anyway."

And then, "there are two in here because each dose lasts about 15 minutes. So if you're farther away from emergency care than 15 minutes, then you have a second one to use." I don't even know that I could get my own ass out the door and to Methodist that fast. Stop signs optional?

At this point I think my face was frozen into a courteous half smile. "OK, thanks!" I say.

OMG. Bug will be eating squash and pear/mango for the REST OF HER LIFE.

Then we got home and I was all like, Emily, don't be ridiculous! She needs to try new foods. I had bought some kind of chicken mixture (I am utterly terrified now of fruits other than apple, pear, mango and prune, and she's had all vegetables). Who's allergic to chicken?!

I swear my hand was shaking as I held the spoon to her mouth. She was mildly impressed with it, but then decided to cough after every bite. Even though she often does this fake cough for attention (especially here because I made her wait two minutes between bites) it threw me enough that I dumped the rest of it out and just gave her squash. And pear/mango.



I don't know, is it red, or ginger? Caught grabbing a fistful of Basie's fur again. He had so many treats last night in an attempt to get him to tolerate her touching him. We've tried for "gentle" but it's just not getting through.