Monday, July 27, 2009

a day in text: done

And here we go. With apologies to Anon., here's the trial (or a similar one) on clinicaltrials.gov

And this how it goes:
1. child tests positive on bloodwork for dairy allergy, below a certain level
2. 7-10 days off antihistamines, without enough allergic symptoms to skew the study (from environmental, etc causes) 
3. Take a deep breath.

Day One: 
  • begin with scratch testing to heated and unheated milk
  • 4 servings of a muffin (contains dairy), wait 15 minutes between servings, check for symptoms
  • 2 hours of observation
  • 4 servings of pizza (cheese topping - it's Amy's Kitchen pizza!!), wait 15 minutes between servings, check for symptoms 
  • 2-3 hours of observation

Day Two:
  • 5 servings of rice pudding (whole milk, milk powder), wait 15 minutes between servings, check for symptoms
  • 2 hours of observation
  • ??? servings of boiled milk
  • 2-3 hours of observation

exhale. hard.
***************************

Lacking facebook or twitter, I'll update this post regularly (see title). And my apologies to any visual types: the lens on my camera is being stubborn, possibly because I dropped it on Friday. So much for the brooding photo of my cell phone, light playing over it - just use your imaginations, okay?

Trust me. It's brooding. And the light and shadow are playing.

4.something am: I'm dreaming that I live in a tiny spaceship, and that I've just discovered that the air is slowly leaking out. I make an emergency landing, but find myself chased by a man with a narrow face, greying hair and terrible eyes. He roars, food! food! and somehow is surrounded by a cadre of identical, horrible men. Food! Food! They shout, reaching for me, and I run. The ground is sandy underfoot, and I scrabble

and wake up, annoyed at my subconscious for its unsubtlety.

6.50 am: the Eldest is dressed, and patting my shoulder. I open my eyes, smile at him, and invite him in. He curls up under the sheet with me, my arm around him, his fingers kneading the skin over my knuckles. He grins at me briefly, his eyebrows arching like his grandmother’s, before settling back into comfort-mode.

I can hear the quiet sucking sound of his thumb in his mouth. Not holding that line today.

7.12 am: the Man and the Eldest slip out the door. Only one parent can go with the Eldest today, and he’s chosen his father. Yesterday, I was jealous. Right now, I’m still half-asleep, and I hug the kid goodbye, before going upstairs to curl up with his brother.

7.59 am: We are here. Where’s the coffee?

The Man will be sending me text messages throughout the day, and this is the first. I can imagine it: the two of them walking into the building, the Eldest holding his dad's hand, thumb firmly in his mouth. The Man, moving briskly, pleased to be on time and the Eldest clinging a bit, but ready to be delighted by this new space.

8.26 am: Weighing in!

I’m grinning now – this is old hat, and I wonder if the Eldest is asking to see his weight translated into kilos, his height into centimeters. He likes the different measurements, I know.

8.40 am: The room is good. It has a tray for pokemon and they are bringing in a DVD player.

The Toddles and I nod approval. Space for cards means also space for paper and pencils, and later, the jar of many-sided dice that I tossed into the bag. Work space is good. DVDs are good, the Toddles informs me. Can we watch one?

9.11 am: the Man calls. The clinic wants to take photos of the Eldest’s eczema. Are we okay with that? We discuss privacy issues a bit, and he says goodbye. I'm a little giddy with relief: this is the first little hurdle passed, since the clinic can't use kids whose eczema is flaring too much, or who show other signs of allergic reaction, which might muddy the data. The Eldest has had to be off his daily antihistamines for the past 7-10 days. Naturally, he's been scratching. Naturally, I worried that this would disqualify him. This is exciting, I thought. It's almost fun! I decide to laugh at myself for being so wound up in this trial, and to loosen up.

I round up the Toddles and introduce him to the unexpected lack of diaper situation, and we begin negotiations.

9.14 am: The Eldest instructs his father to tell us that, The skin pricks really hurt and I want to scratch. But, adds the Man, he’s not scratching….

We cheer, and the Toddles asks where the skin prickles are. I type this in dutifully, thinking about the ways we’re linking our family today. Tell him, the Toddles says, that I dripped applesauce on my pants and that I’m wearing pull-ups!

9.25 am: I think we left the prickles in the fridge J, says the Man. The Toddles and I grin at each other. They’re on his right forearm, the Man clarifies. Ah, says the Toddles. Can I have a pickle? We are, after all, in the land of Guss. Why not?

9.32 am: finished skin test, the Man writes. Boiled milk smudge a smidge smaller than unboiled. Both pretty small….

I can feel hope pressing into my chest, and I know the Man is trying not to let the possibilities pull his muscles taut, to stay relaxed for the kid. Look! says the Toddles, I have a jaywalking hockey stick!

He does, too.

10.42 am: Unable to place IV so far, the Man writes. Calling in IV team…

I'm hauling in extra air, inflating my chest to roar when I sit on myself, fighting an urge to stomp downtown and ask why on earth, are they having trouble placing an IV on a kid with fantastic veins? I could put that IV in. Who is screwing up?

I am, of course, much less angry about the kid getting stuck than I am worried. I’m tallying the kid’s stresses, and worry that this will tip his scales badly. If he’s scared or upset, I know, any mild allergic symptoms will loom larger. And then what? And then, I tell myself, I shut up. Because I know full well that I'm letting every wee scrap of information magnify itself, simply because I'm not there. I have no context.

Proportion. I need proportion. I close my eyes, feeling my breath fill me and nearly fall asleep.

11.24 am: The Man calls, with the Eldest on speakerphone. The Eldest is in tears. I don't want them to make my body lose the dairy allergy. I don't want to! Oh. So much for proportion. I curl up on the couch, and tell the Eldest the story of his inhibitors. Nobody can make your body do anything it doesn't want to do, I told him, ruefully. If they could, I'd have talked your body out of that sesame allergy, ages ago... The Eldest is quiet, and then wails again. I wonder if the Man sees what I see: that of the three of us, the Eldest is the only one admitting the sharpness and insidiousness of his fears.

This is his body, as he knows it. And it has defined his world - our world - as we know it. How much change are we prepared for? How little? We can embrace what comes, but the waiting cuts deep.

11.30 am: The Man calls back, having tried a phone-free therapeutic cuddle. My client wishes to offer a compromise, he suggests. He'll eat this bit of muffin, watch STOMP on the DVD player, and have some lunch. And then we'll see. Ah. Trigger identified: this was the Rubicon moment, from the kid's perspective, the moment of launch. I laugh, and agree that perhaps this is a good idea, and warn the kidlet not to enjoy the dairy deliciousness too much. I am, after all, his mother, and I have standards. It's an old joke, and it works well here, letting the Eldest rebel against his stern, anti-fun mom.

Deliciousness, I point out, comes really close to having fun. And there had better not be any of that in the lunch they're bringing! The Man grins into the phone, knowing full well that I'd discussed french fries with the staff, and the Eldest laughs, reminding me. French fries? I shriek in my best Evil Queen voice. FRENCH fries???!!

11.36 am: More muffins eaten (2nd of 4 doses). DVD on. Kid relaxed and healthy.

Inhale, exhale. Time to think about my own lunch, I suppose. And the Toddles', who is at the swimming pool with the Grandmere. I head off to the kitchen, ready to recapture some of the day's ordinariness.

12 pm: Third dose eaten.

I drop my knife, dump the tomatoes into the bowl (sunflower sprouts, olives, lettuce, basil, scallions - must add avocado, and peaches?) and proceed to text furiously, telling the Eldest that I'm proud of him for doing the hard thing, for trying, and telling the Man to be my proxy: hug the kid, high five him, and let him curl up in the lee of a parental lap, knowing himself to be brave, and feeling himself to be safe.

12.15pm: muffin finished

I dance around the room, grabbing the Toddles and Grandmere as they walk in the door. We're so close now, so close to being able to have a tolerizing regimen. Two hours to wait, but the next 30 minutes will tell. The Eldest has done the hard part, and now he can relax with the DVD player and wait. For french fries, he reminds me, and I grin.

Finish the muffin (a.k.a., Round One) without incident, and you can try tolerizing the kid, even if he doesn't make it through Round Two (pizza). Ambivalent about the pizza over here, the Man tells me. But looking forward to the fries...

1.45 pm: I'm clearly not good at waiting. The Man's not answering his phone, so I find an excuse to text them. What kind of data, I wrote, do you think the scientists are collecting today? There was a surprisingly short pause. Blood data, the Eldest wrote. Successful eating data. Dinosaur data. I checked 'maintain sense of humor' off the Eldest's status list, and mentally hugged my Man. Wonderful dad, he. Feelings data? I asked. Exactly right! they said. Nose data?

Suddenly, I remembered that I've been punchy on adrenaline for most of the day, and felt my muscles tingle. Nose data? I wrote, aiming for casual. Is the nose data-worthy? The Eldest barely blinked. Daddy's nose is more data worthy than mine, he wrote.

I grinned, he sent happy electrons, and next to me, the Toddles decided that the world was too interesting to waste on a nap.

2.10pm: The Toddles was falling asleep, but buzz! went the phone. Pizza: "great, awesome, no other words that can explain it," said the message. Dad suggested 'fastrudizzliastic." I bounced out of bed, and went to find the Grandmere. Could she settle the Toddles down, while I wiggle a bit? I promised to eat lunch, and we had a deal.

2.24 pm: second dose, consumed!

My world is shifting around me. The kid is not supposed to be able to do this. He's not supposed to be able to touch the stuff. We've been told, over and over. Is the pizza still yummy? I asked. The Man nodded, electronically. Fuck me, I blurted, astonished. Hit send. Blushed. Maybe later? he suggested, and I laughed. This changes - oh, so much, you know, I wrote. And didn't need the Man to reply. He knew.

2.54 pm: working on dose number three!

But now I'm diverted, focusing on the Toddles, who has suddenly decided to drop his anti-toilet platform, and consider the possibilities of toilet use. Tell them that I'm wearing pull-ups! he instructs me, and then settles himself on the toilet, where he'll be silent, focussed (and effective). I do, but the Man cannot pause to consider this, because the kid's on TV! He's what - wait - what? The hospital has a call-in show for the kids there, at 3pm. He's on TV. Okay, I think, that's it. I slap the ground, and it's solid, cool tile. I look up - yes, up is up, down is down, cardinal directions: check. So what the? He just explained that TV only has three colors, the Man informs me. Red, blue and green.

Just then, the Toddles explains that he's finished his poop, hops down and begins cleaning himself up with a surprising degree of competence. My eyes narrow, suspiciously. We have moved beyond the unlikely, folks. Beyond improbable.

3.18 pm: pizza done. 2 hours of observation to go. Oh, and the kid volunteered the color thing on his own.

And the Toddles is dry, having used the toilet again. His idea, his execution. I'm borne along on the current of this day, my feet trailing behind me somewhere. So I ask, is the pizza finger-lickin' good? The Man's electrons are severe: he has a fork.

of course he does. Bring it home when you come, honey, and stick it in me: I'm done.

8 comments:

magid said...

Sending hopeful thoughts your way...

Anonymous said...

OMG OMG OMG I keep checking back. This is awesomeness news...

AM

Anonymous said...

That's so amazing!! I hope it continues to go like this! I can't wait to hear more.

Get Twitter. ;)

Nicole

magid said...

Oh, oh, oh! CHEESE! Yogurt! Ice cream! All sorts of dairy deliciousness, veering into too much fun!

So looking forward to hosting you for a dairy meal! (With apologies to the Man's dairy intolerance).

(I knew there must be some reason I bought 4 packages of cheese at the Butcherie this morning!)

*happy dairy dance*

Anonymous said...

This post has been bringing up all sorts of emotions in me I can't even tell you.

You all are wonderful. I am amazed.

I'm continuing to read. I'm continuing to hope for you.

Miriam said...

Eh, she's not that special. I lived with her for two years, and all she REALLY does all day is read and eat olives. ;)

Wow, babe. Just wow.

dykewife said...

oh, my!!! what a day you had! do let us know how things turn out. i'm happy for toddles and the toilet.

i used to hate pizza. didn't like mushrooms, didn't like green pepper, didn't like onion, didn't like pepperoni, didn't like their tomato sauces. i've grown up to like all those things except their tomato sauces. i prefer to have no sauce.

tonight was green curry veg with tofu on basmati rice. the green curry was a premade store thing. i have to make my own paste. though this was good, i'm sure my own will be better. :)

Anonymous said...

So, what happened next?! Can't wait to hear more. I told the Eldest's classmate--she thought it was very cool, but then realized I don't let her have all that much dairy (but that perhaps she'd get more when it would be there for birthday parties and I wouldn't know about it).