Wednesday, July 29, 2009

plan for recovery

if I do nothing else today, I'm promising myself that I will breathe. And nap.

We're home, as for 2 am last night, and the place overfloweth with bags (the Man's approach to packing is to toss things into bags, regardless of size. Effective, but yee-haw! our duffel multiplies itself thusly into seventeen cloth shopping bags, and where are the toothbrushes?) but not laundry (the Grandmere's approach to grandchildren is to make enthusiastic use of the washing machine. Sometimes on the children.).

And a list of things to do. Bake muffins, according to a very very specific recipe. Buy pizza. Buy calipers and measure out the Eldest's amounts of these foods. These he shall have, to those degrees, and no more.

Take the boys to their very first swimming lesson.

And breathe. In, out. In, out.

The air is the same, even if the ground has become oddly gelatinous underfoot.

Tuesday, July 28, 2009

following the improbable: game over

Yesterday was an improbable day. 

You could've scraped me off the floor, except that the day produced a buoyancy that had me floating, brain stalled and waiting for something recognizable to show up. 

I was ceilinged. 

Today came with a changing of the parental guard, and the Eldest and I are * right now * sitting in the clinic, alternately building Lego, rubber-band driven cars (it went 8 feet! it went 11.5 of my feet!) and eating rice pudding. With cinnamon. And sugar, the Eldest reminds me. Ask Diego for the recipe!

On the menu today: rice pudding, a break for lunch, and then a glass of boiled milk. And Lego. And invisible ink games, many sided dice, and Diego's famous french fries.

The kid's inhaled four of the rice pudding's servings so far, and the fifth has just arrived...

10.40 am: 
So, how do you feel?
The kid offered up an eyeroll. I poked him, and he sighed. Body: good. Tastebuds: good. Feelings: good.
I raised an eyebrow. The kid deadpanned. I raised the other eyebrow. The kid grinned, arching his eyebrows exactly like his grandmother. 
Then he caved. It's strange. I thought they [the staff] would be all, hurryhurryhurry, and they're not. It's better that way. And everything tastes good. 
I nod. It is better when people don't rush you. But what did you expect?
He shrugged. I don't know what I expected. Hey - invisible ink tic tac toe! Let's play, Mom.

mellow, laughing, we wait. Five pudding servings done, and now we chill. The staff and I are quietly braced: the Eldest got an extra dose of clotting factor today, anticipating the EpiPen that will come - it must, right? how could it not? - later today. But the Eldest's laughter is infectious, winning a grin even from the offended toddler in the room across the hall, making it easy to relax into the wait.

But after yesterday's improbability, I don't really know what it is we're preparing for.
lesson from the nutritionist: plain Heinz ketchup is fine for peanut/tree nut/sesame/dairy/egg/gluten/kiwi/Imperfectly chosen legumes/Imperfects. Not so great for garlic allergies, though.

tip from the staff: kids who make it through the pizza, usually make it through the rice pudding. It's rare for a kid to make it through the boiled milk.

note to self: get a grip. stop babbling. and the alternative? glazed, blown away monosyllabic thing? not so much of an improvement. find third option, sometime soonish, hmmm?
Anon, there's nothing in the IV - it's there in case of emergencies. And yep, he's allergic, at least enough to test positive on the bloodwork and scratch testing, enough to come home last night sneezing and congested. 

The details on the study are in the previous post, but yes, it looks a lot like a food challenge. Just with the reality that at some point, he's still allergic, and he will react. If I had to guess what's happening here, I'd say that this is an example of the basic problem in food allergy: even the best doctors can't tell the degree to which an allergic child will react to their allergen. And, similarly, you end up with children who will test positive, but can safely eat the allergen in question. A very very good allergist is more likely to know what they are dealing with, and that's why we're not in Boston today. That's also why Boston sent us here in the first place.  

Our boys test positive to everything, and when their immune systems are in hyperdrive (irritated, triggered by an allergen), they will also be more sensitive to mild allergens. Over the past year, their immune systems have had a break, and have relaxed. But at some point today, I can't imagine that the Eldest's body won't decide to draw a line in the sand.

And, having said that, it's time for the kid to drink some milk.

game over.

The Eldest drank 5 cc of chocolate milk, relaxed against the cushions and watched all of 2 minutes of TV before turning red, sitting bolt upright and coughing. He offered a choked wail before running for the bathroom, and waiting to vomit.

Benadryl, industrial sized pink basin, and a calm, calm voice later, the kid is building Lego on the bed and drinking pints of water. And the number of staff loitering in the halls has, mysteriously, doubled. Across the hall, the toddler is also clutching a basin and moaning.

80% of the children whom we enroll [translate: who are deemed eligible] can make it through the muffin, our nurse tells me. 60% or so make it through the pizza, and usually those kids also make it through the rice pudding. But there's something about that first drink of milk....

I nod. This makes sense. They wouldn't enroll the kids if there was no chance that they'd get a little of the way through, if only because that would mean that the kids would also be at risk for a nasty reaction, if they were so sensitive as to react to the initial phase.

Still, she says, he was able to describe for us how he felt, and that was fantastic.
Rare, added another nurse, kibbitzing.
Yes, said our nurse. Definitely rare.

I could've told them that.

Suddenly, I'm very, very tired. Wonder if the kid takes naps when he's on Benadryl? Judging from the Lego action, I suspect not.

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

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.

bloody friggin' hope

I am, as it happens, a great fan and a great skeptic where clinical trials are concerned.

I want clinical trials to happen, and I want lots and lots of people to sign up for them, so that we have mounds of data – swamps of the stuff, stuffed with mainstream, riddled with outliers galore - all the data we'd need to warn doctors of the ROUSes that may lurk, should a drug or treatment come to market.

Swamps, morasses, dancing mountain ranges of data. Not that I have any intention of contributing to it, myself. Or jumping on the results when they show up as headlines. Back when gene therapy was the Great New Hope, we were often asked, wouldn't it be wonderful, if they come up with a way to cure hemophilia?

Sure, I’d say. About oh, twenty or so years later. Once other people have field-tested it. A lot.

Because bodies, as we know well, are weird. And the dancing mountain ranges may not contain that wierdness, o Horatio. As much as we may know about them, bodies can nonetheless be unpredictable, unreliable, or just plain quirky. Imperfect bodies are especially good at this, and when the Imperfects quirk, their doctors have to admit just how much medicine relies on strong, date-fed guesswork, or on the lessons of experience – which are not always backed up by understanding. This works, although we don’t really know why, we are told, and I respect that. I often don't know why, either.*

But a trial and quirk and ‘don’t really know why?’ Too much unpredictability in one room.

Count us out.

Except sometimes, count us in.

The Eldest’s allergy whizzbangers are conducting some of the trials on these new, daring ideas about tolerizing children with allergies. And tomorrow, we’ll join the ranks of hopeful families, to see if the Eldest might be able to be tolerized to dairy. A bit. Not cured, mind you – just more tolerant. Immunologically open-minded, you might say.

I'm sitting on my inner cynic here, but I think it's worth it. Unlike those gene therapy trials, this is a risk we can measure:

  • the risk of exposing him to an allergen, and having his offended immune system crank the allergy up a few notches. Stasis vs manufactured change? Or, stasis despite our attempts to create change?
  • The risk of a reaction – and he will have one, given the structure of the trial. He knows this, but chose to sign up regardless. It's okay to be nervous, I told him tonight. He nodded, looking down. Breathed for a moment. And then looked up. I know. I'm glad he knows, but there's a frozen knot in my stomach. Because my job is to protect him, and maybe at this moment, protecting him means also putting him in harm's way. It's true on the playground, when he climbs to the top of the rope webbing. But is it true here? I don't know. So, risk of a reaction, risk of responsibility, risk of - well,
  • The risk of the psychological impact of that reaction, because he’s not had a reaction in long enough that this will shake him.
  • The risk of hope.
I wrote about hope and this clinic shortly before our first visit, and they keep yanking that chain. On our most recent visit, we were flabbergasted to see that the boys' RAST tests had dropped. All of them. This has not happened, ever. The boys are famous for their RASTS, for the thin ar up there with their scores, and here they were, having dropped from holyfreakin'molyI'veneverseenanythinglikethat, to ohwowbutthat'sreallyhigh. Which, you have to admit, is one hell of a drop. So, if these allergy wizards can help us swing that, what else might they be able to do?**

So, the trial. Where they will feed the Eldest dairy until he reacts. If he reacts too early in the trial, then we're out. But if he makes it far enough before reacting, he'll eat measured amounts of dairy - only - daily, for a measured amount of time. The reaction is a given, because he's still allergic to the stuff. Think about it: he's allergic. We're feeding it to him anyway. And the good news would be getting to feed it to him daily. Maybe, possibly, perhaps this might help his body adjust to the allergen over time. Maybe.***

How the hell could we want to do this?

Dairy is a big pain in our Imperfect ass: it lacks the PR of peanuts, and frankly, it’s an easy protein that folks find hard to replace in school lunches. And birthday celebrations. Skip the eggs? No problem. But the pizza-n-icecream? Well, you’ve got me there. A little more PR, and folks would understand that dairy really can be scary, just like the Peanut ‘o’ Doom, but hey, if we can’t fix the PR, could we maybe tinker with the kid?

Ask the question, of course, and you then have to wait for the reply. Stomach clenched, waiting for the inevitable reaction and please don’t let it be too bad because I’m why he’s here, and damnit, cold fist in the stomach, clogging harsh lump in the throat, swallowing past it and – oh, fuck me– hoping.

*see here, especially the last two 'grafs for more on this.

**at the initial visit to this clinic, both boys were diagnosed with environmental allergies. Exposure to an allergen can raise the immune system from Defcon 3 to 4, 5, or 17. And drag the lab results upwards, as the immune defenses crank into gear. If the kids are exposed to their allergen, say, like a dust mite's poop, for oh, 8-10 hours at a time, that'll wreak merry havoc with their immune systems. Get rid of the allergen, and the body will settle back to normal. Or whatever it thinks normal oughter be. Personally, I'm not knocking it.

*** Tolerizing is a protocol known pretty well to folks in the bleeding disorder community, especially those in the lightning-struck, punch-drunk inhibitor circles. Those lucky folks are people who typically don't make any of a certain clotting protein naturally. As a result, their bodies are making antibodies to their clotting meds, in an honest but oooh, cripes attempt to protect them against a foreign protein. The standard protocol is to

  1. hope that the poor guy's antibody, or inhibitor levels are low enough so that you can
  2. do 12-18 months of daily infusions of massive, expensive amounts of clotting protein. While
  3. hoping that the guy doesn't bleed much, because the clotting protein is going to get infused into him, but not work, thanks to the antibodies. Which means that you'll need lots of infusions of another, even more expensive clotting med - oh, every 2-3 hours while a bleed is going. And that stuff won't work as well, because it's so short-lived. Ow. Oh, and did I mention that
  4. success does not mean that the antibody is gone. As the Eldest proved. He got mostly over his inhibitor, after 18 months of some pretty intense needle-work. Mostly. But, keeping an eye on this post's original topic, we learned then that we're very willing to measure success by whether something gets easier to live with. Or, just plain better.

Monday, July 20, 2009

using the plural

My sympathies are with Persephone, as I start digging through snack options for the boys' schools. It's a maze of information, misinformation and irritating details.

And yes, I did say boys, as in plural: the Toddles has a preschool for next year.

After last year's disaster, I researched my maternal ass off, looking at just about every Jewish preschool in the area, and any number that I would have sworn were too far away. Many treated me graciously, many emailed or called me sadly, days after my visit, to admit that they couldn't handle the Toddles' allergies. Too much risk, or too much liability, or we're just not set up for it. And occasionally, ah, and we wish that we could....

I was grateful for every school that turned me down. How else? I'd rather a school say no, realistically, than to casually, or even idealistically take on my child - and not be able to manage him. And I said as much to each school I visited, candid about why we were there, and how I'd contributed to our departure from his previous school.

In the end, two schools remained. One wait-listed us, while the other invited me to meetings, built files and began working with me even as I waffled, wondering if the first school would open up a spot... In the end, I was won over by a lady with an armful of detailed, careful notes, an organized file and a memory for detail. She understood my situation to a degree that is rare, outside of parents doing the constant micro-adjustment dance for their own, complex child.

Oh, but it is a small school. Tiny. Maybe 25 children, in three rooms. All of the rooms flow into each other, and the open doors between the classrooms are a key element to the curriculum. So, said the director calmly, fearlessly, we'll have the entire school become Toddle-friendly

I gasped. I gaped. I stared at her, searching her face for any sign that she was slagging me. But she wasn't, which is how it comes to be that the Toddles will be going to her school. Her pluralistic preschool, run by a right wing Jewish organization. But who cares who funds the place, when it's run by someone who understands, and isn't afraid to adapt. 

So, the boys' schools. Plural. And lists of snacks, phone calls to companies, website searches, and ugh, oy, freakin' bloody inconsistent labelling. But enough of that. Try, instead, this:

And, lest you think that the Eldest is the only one who can nerve himself to stick a needle in his arm, I should note here: he's not. With a box of my very own factor in the fridge, I had to admit to the pharmacist that yes, my infusion plan included waiting for the seven year old to come home from school. 


So, the Eldest and I did it together. But no, he did not hold my hand. After all, it's just not a big deal....and he kindly explained why. And, two days later, he demonstrated.

(like hell. I was scared poopless.)

Friday, July 17, 2009

many, many teeny, tiny wee pieces

I am adrift in a world of Lego.

Not, mind you, the respectfully sized ones designed for children under 3, but rather the wee teeny tiny easily lost until underfoot ones. Say it with me: eeeeeyowtch!

Personally, I blame the NSF. They funded the bloody program, you see, which is how my kid ended up learning about robotics while I twitched in corners and did my best to explain that no, early exposure to robotics and engineering was not part of a carefully crafted plan to get the Eldest in to Harvard.

'scuse me, Hahvahd.

My anti-intellectual reflexes aside, it was freakin' fantastic. The kids learned to program, using a pictoral programming language. They learned how to apply that to their intentions, in an NSF variation on the old 'make a peanut butter sandwich' lesson. And oh yes, they built stuff: they built houses with motion-sensing doors, they built drag racers, elevators, bulldozers, a train that automatically stopped at a number of stations, and after we got stuck behind one on a particularly cranky morning, the Eldest built a street-sweeper. He then got caught up in an anti-Lego City cabal, and proudly demonstrated his cell leader's spinning torture devices. Well, okay.

Later that day, he and I would whip out paper and pencils and design three different drawbridges, working out a rough sense of the mechanics for each.  Holy freakin' moly. Holding the Eldest's sketches, I blinked in parental morse code at the Man, who nodded enthusiastically. Later that night, the Man and I would spend a happy half hour contemplating the various bits of used Lego for sale on eBay. Bless those grandmothers, selling their grandsons' unwanted Lego. Best wishes to the feline-lovers, raising money for their pet's chemotherapy. And uber-thanks to the lovely grad student who ran the program, and happily consulted on Lego options. 

No, really: awash. Many, many teeny, tiny wee pieces. A mere seven pounds of the stuff, at last count. And of course, the boys are entranced.

Over the course of the next week or two, the Eldest happily delivered a series of lectures, or possibly monologues on the subject of his week's explorations, which I scribbled down as fast as my oversized grin would allow. Here are some excerpts:

there are 2 things in a tilt sensor. The first is mercury, the second is wires. Put together when you tip it one way, or another way, then you have a full circuit. You have to tip it in every direction to have a full circuit. A half-circuit would be when you tip it one way. Tip is again (the other way), and you have a whole circuit.
about the bump sensor: The machine goes forward until it bumps into something, then boink! stops because it's using the bump sensor. It works by - [pause] I don't know what's in it. But you can't have a "WAIT FOR" bump sensor.
transcriptor's note: I think the "wait for" is one of the programming commands that the children used.

I wish I had made a Lego person robot. Nobody else made that. [thoughtfully] Never got it checked off our list... If there had been more time, I would want to tackle how to make a dragster. 

To have a robot, you have to have Legos, axle rods, gears and, of course, the electronics. Those would be the light sensor, tilt sensor, bump sensor, sound sensor. You always need a motor. Connected to that you need an axle rod and a gear. The motor spins the axle, and it would spin something like a gear...

And we followed his prescription, eBay lot by eBay lot. Gears, wheels, axles, bricks and wierd random things that come in a lot that's measured by pound, rather than by itemized contents. Which was just fine by us.

Eventually, however, I did have to ask about the torture chamber, the tank and what I rather thought were anti-aircraft missile systems. (happily, non-functional ones) The Eldest grinned, and told me:

While the rest of the group had been building Lego City, we were in a multi-universe, another universe, another century and almost like Fred Ward - and we were on another planet, too. The Eldest's grin widened, impossibly, and he went on. We were making vehicles meant to destroy their city, made of the same things as the dragster. I took a moment to appreciate the sense of subversity in his approach, and sat firmly on the lecture about opportunism and armies. But why? I asked, naively. The Eldest favored me with an earnestly patient look, and explained. 

We were attacking the city of one reason: they did not have an army. They would have no way to defend themselves. They're unarmed! We were trying to take over the Legos - in fact, he said, his voice ripe with satisfaction, we did.

Looking around the room, my feet stinging from Lego-edges and Lego-corners, I was hardly in a position to argue.

Thursday, July 16, 2009

on the care and management of husbands

I feel dizzy, the Man commented. 

Four feet ahead of him, pushing a sandy, exhausted Toddles in the stroller, I nodded, noted and filed the remark. We'd spent hours at the park that day, relaxing in the shade while the boys played, picnicking on a patchwork of towels: luxurious. Walking home, it occurred to me that dizzy wasn't  the word I'd expected the Man to use on this day, at this time. Tired, sure.  Sleepy, oh I'm right there with ya. Relaxed, absolutely. I tucked away dizzy, sure that I'd understand it eventually, too busy floating on the pleasures of the afternoon to muster a proper worry. 

And oh, that afternoon.

The Toddles had stood under the jets of water, soaked and fascinated, his mouth open with pleasure - when it wasn't netting water. I'd filled my mouth instead with the tastes of summer shabbat: this week, it was Thai basil, grilled chicken, scallions and roasted plums. Ooooh. The Eldest, bolted barely enough to score dessert, then vanished to experiment with hydrodynamics. Dripping and banned from the sand until he dried (somewhat), he then found that the snazzy brushed metal of the park's slide and climbing structure made wonderful, resonant sounds. Boom, bim, bim boom, said the structure, as the Eldest swing his arms, concentrating. Nearby, the Toddles spluttered and laughed at his faceful of water while I grinned at the Man, who excused himself to help the percussionist. 

(and was promptly sent away, percussion being a solo affair, it seems)

So, I feel dizzy, the Man commented, and I barely blinked. Walking along, ripe with relaxation and smiles, I suggested that perhaps skipping his morning coffee did not help. It hadn't, as it happens, but that was merely ancillary.

Days before, the Man had felt dizzy - a moment here, a moment there, but nothing worth mentioning. He's made of stern stuff, our Man, and will lower his forehead and keep on keepin' on even when he's sick. I've yelled at him for it, and accidentally exploited him when he's done it. Sometimes, irritably, not so accidentally. The Man's lack of care for himself is legendary among the adults in the family, and hopefully not as well known to the children... Although today, the Eldest asked why the Man doesn't carry his own EpiPen - he carries one of mine. Um.

Over the week, our stubborn, determined guy felt his world teeter, then twirl around him.  Thursday was a fast day, and the Man felt - like the rest of us - lousy. And dizzy. He racked up some dehydration and didn't do much about it, hovering on the edge of slightly desiccated until Sunday. When the boys and I came home from a play&celebrate to find our guy in bed.

He had not eaten. (oh, wait, said he, a piece of toast. And, um, some jelly beans) He had not drunk. (well, perhaps some coffee) My raised eyebrows aside, it was clear that he could do neither now. And oh, he felt sick. I cultivated an air of mild irritation and pleasant care, and offered him some apple juice before going off to find out why Shaymin Level X was crucial enough for fratricide.

No apple juice.
No water.
Lemon slices? no, not helping the nausea. And urgk, the spinning room

There he lay, his eyes shut. I considered worrying.

The Man admitted at this point that no, he did not have a primary care doctor for me to call. I tamped down on a lecture that I'd given cyclically over the past couple of years - clearly, it hadn't been effective. Right, then. The ER it would be.

Dizziness is, apparently, a fairly common cause for a run to the ER. It can be triggered by stroke, by blockage in a major vessel leading to the brain, by dehydration, by something upsetting the inner ear - or even a canal of the outer ear. There could be a tumor in the brain, a viral infection, or a funny, spasmodic twitch of the eyes that fools the brain into seeing motion in a still, placid world. The eyes move, the world does not.

If I'm being fair, it sounds amazingly uncomfortable. My poor guy, staggering from the car and acting like he had the world's nastiest case of car sickness. He had an unstable, twirling world, and a zip through the potholed streets in our neighborhood had managed to give his internal twirl a nice high-kick and bounce.  


So he won the door prize: IV fluids, dramamine, and a rookie doctor digging a ginormous chunk of eeewwwww, funky wax out of one ear. Whoa, said the doc, and carefully saved it. Ah, said the doc's boss, respectfully. That should do it, they chorused. And sent us home, where in fact, that did not do it. And so back we went the next day, this time to a different ER where the Man was again hydrated, prodded and invited to follow my finger with your eyes. The doc grinned, and showed me the slight twitch that was spinning the Man's world round, round, round. But, he pointed out, this muscular fillip should have responded to the dramamine. He offered some IV valium to the Man, and while our lad snoozed, the doc and I considered cheery things like tumors.

One MRI later, the boys were asleep in the Man's hospital bed, and I'd abandoned Cosmo (the Obama's sex life! your g spot!) for Good Housekeeping (spice rubs! pantry soups! remodel on the cheap!).  Muttering, I'd sewn together a felt fish that the Toddles had traced, ordered to be cut and designed. The boys had been admired, and shifts had changed. The Man had been lectured on the usefulness of primary care doctors while I made quiet-ish choking sounds, and had slept through the news that, in fact, he did not have a tumor. Nor a blockage of a useful vessel to the brain.

Sitting in the dark room, the sleepers piled on the beds we'd cadged, I began to breathe again. I'm often the only one awake at such times, it seems, standing guard over my family in the dark. Waiting for news to emerge quietly from corners. At some point in the long, well-trodden hours of that day, my carefully cultivated loving, mild irritation had faded. And I'd begun to worry. Just a little. By midnight, the worry had folded itself, origami-like, into a complex, fragile structure as I waited for the MRI's results. And then I set it aside, collected the sleepers and went home.

Why did you bring the boys? a friend would ask the next day, and I didn't have a good answer. They'd been left with friends on Sunday, but were very clear on Monday that they wanted to be with their dad. So I brought them. Because they wanted to go, and I suspect, needed to. 

Look! I'm learning so much! the Eldest exclaimed, maneuvering cannily.  I knew what he was learning, and thanked the friend who offered to help relocate the boys. The boys would stay, and watch their father take a rare turn at being not-quite-right. And yes, I knew that this trip would probably bolster our family myth that the ER is where you go to be bored and ultimately, fine.  Still, I brought them partly to share the vigil, partly to distract us, partly because we have no fear of emergency rooms, and know that we can ask the nurses for an extra blanket, a couple of pillows, and we can make sock puppets from the silly, thick hospital socks. We can laugh. 

The laughter is part of the mythos, of course.

And sometimes, we do all of that almost incidentally, focusing instead on the serious business of being together, loving and a family in a place that would otherwise leave you feeling silenced and alone.

The next day, I had a check-up. Women, mused my doctor, come in to the office for a range of reasons. Men, howevertypically come because their wives make them. The doctor paused. Maybe that's why married men live longer?

I went home, and tossed my ideas of respectful partnership out the window. Flipped open the laptop and found the Man an insurance-approved doctor of 20+ yrs experience, evening hours, working in a practice at a major medical center, checked a couple of patient reviews - and signed our lad up.  You've got a check-up in August, I informed my love. You'll be seeing Dr. Z

He nodded, and humbly thanked me. I patted him on the shoulder and went to try a spice rub.

I'm doing a lot of cooking with the boys this summer, and they're happily recording their favorite recipes in their very own cookbooks. It's a mixed experience, especially when we're getting close to dinner time...but this spice rub was a lot of fun to put together with the Toddles. We smelled and touched everything, and grinding the spices was tops on the Toddles-O-Meter. Eating it did pretty well on mine.

The Tilt-A-Whirl spice rub

1.5 tsp black peppercorns
2 tsp fennel seeds
1 tsp coriander seeds
1.5 tsp cumin seeds
.5 tsp coarse salt

grind in a coffee grinder, or mortar & pestle, if you have a strong arm. Very strong arm. 

I dredged some tuna steaks in it, courtesy of a friend with good taste in fish, heated olive oil in a pan, and seared them for perhaps 3 minutes per side. I'll happily try this again for chicken, and definitely for tofu.

oooh, yum, said the Eldest. That's the most yummiest I've ever had! the Toddles trilled, and briefly set aside his current dislike of edibles to eat most of a slab. With ketchup. (sigh) And our current favorite salad!

Summer's Just Peachy Salad:

Like all my salads, this is more narrative than prescriptive. Or, as the Eldest likes to say, it's a matter of food math. You have your basic elements: green + something onion-y, x something crisp + something soft/mellow divided by something(s) sweet, salty, sour. Got that? Right.

For the specifics-lovers, try the following: 
a bowlful of greens, preferably one of those ridiculously soft, melting farm-fresh red leaf lettuces. Or romaine, if that's what's surviving in your fridge. Or a mix of anything - but go easy on the arugula, watercress and other tangy greens. 
2 scallions, chopped
a handful of pitted kalamata olives (I like Trader Joe's), or some other mild olive - pimiento stuffed olives are probably fine, too
2 rather crisp, underripe peaches
....and anything else you like. Can't imagine a salad that would go badly with toasted, slivered almonds, and this one is certainly happy with avocado, garlic croutons, and many other somewhat improbable things, including (no, really) a scant handful of blueberries.
Fill the bowl, then dress the salad. How? Well, try tossing with olive oil, sprinkle with chili powder (or cumin), garlic powder (fresh garlic will come in with big, heavy combat boots and stomp on everything in this salad, so don't use it - and did you ever think I'd say that?), salt and pepper, toss again. Drizzle slightly with a mild vinegar, and toss a third time. Woot!

Sunday, July 05, 2009

one reason to wish our TV worked...


Hat tip to the Nome, for pointing out that USA Network's new show, Royal Pains, is starting with an, um, ooze. Yep: hemophilia.

Here's a short review done by someone who seems to know his tellyvision, and another done by someone whom, I suspect, knows his factor level. Shockingly, the show doesn't improve by having a bleeder on it.

And happily, curiosity isn't enough to impel us to shell out for a tv and the cable company's goodwill.