Saturday, February 27, 2010

the Eldest muses

Topic for discussion: people who talk to me like they want to fix me, as opposed to people who try to help.

Should've seen that one coming. And looking at the words on the screen, I can see how the concepts spiral outwards, spreading insidious tendrils into so many places of the Eldest's world.

Fuck. This is what's on the other side of the medical microscope - the creeping, spreading sense that people view you as cracked, broken, propped up by your meds, or your behavioral techniques, or your medical/educational team. I can see the fine hand of the loving, worried architects who built this edifice from good reasons, good cause - and curse it, them nonetheless.

And thank my lucky stars that I have a kid who wants to talk about it, even if he doesn't want to tell me why. I don't want to get anyone in trouble, he told me, and related vague incidents to explain his concerns.

Look, I said to him, ducking the question of neuro-normalcy. You are a kid. When you were the Toddles' age, you needed a stepping stool to reach the sink, right? Because you were short, and you needed a boost. Kids aren't broken when they can't reach the sink - they just haven't grown tall enough yet. And that's the deal. Kids need tools - or help - not fixing. And if you are having trouble sitting still and need a squish [hug], it's because you are kid - and kids need help while they grow. Tools are good, right? I checked the kid's face. He nodded, recognizing his cue - despite his current anti-tool, lemme-alone stance. I risked a closing flourish. And in time, you'll grow into the person that you need to be.

The Eldest grinned. I tried to look him in the eye, without wincing too obviously - I have tried to fix him, and I've spent hours and weeks and electrons thinking about him as being a scratch-and-dent. So if anybody talks to you like you need fixing, just remind them that you're not broken - you are a kid, and you are growing.

Right. Now: walk the walk?

Thursday, February 25, 2010

why my kid goes to this school

Purim is coming, and we are baking at Chez Imperfect. This year, I'm wimping out on the vegan GF hamentashen, and going straight for the sugar: vegan caramel corn. We're making batch #3 tonight, and the house smells amazingly of caramel... Come Saturday night, the Man will have bags of yumminess to offer to folks who come and listen to him do silly voices over the megilla.

But all in all, it's a holiday when we spend a lot of time watching other people eat - or judging it wiser to stay home. And as prone as I might be to self-pity, I'm actually pragmatic here: it's hard to find and safely prepare an Imperfect friendly yummy or two, especially when you are up to your ears in hamentashen flour. In fact, I am actively grateful to people who recognize this risk...and opt out.

The Man and I think of our mishloach manot as a kind of gentle persuasion: oh, do you like that? I can give you the was easy to make. But primarily, as a way of saying to our friends and community, hey - good to see you! It might make you uncomfortable to receive and not give, but we're fine with that. We value our friendships and community more than some relationship balance sheet.

But sometimes, we get an unexpected revolt. This year, it happened at the Eldest's school.

After a flurry of emails and a phone call or two between me and the Cooking Club Leader (aka, lady whose club turns out yumminess with extreme wheat, dairy and egg content, but is very nice), the flurry concluded with the following result:

(From the Assistant Head of School, via email)

Dear Teachers and Mothers of Highly Allergic Kids -

I'm writing to let you know that we have allergy-safe treats for Mishloah Manot for your boys.

Tomorrow morning the Lower School students will pick up treats for Mishloah Manot from a "store" we're setting up in the Sabra classroom. Some of these treats are store bought. Hershey's Kisses, Starkist Gems, Twizzlers, and raisins. Those items are clearly marked and the boys will take what is safe for them to take.

Also available will be caramel popcorn, chocolate covered pretzels, and Rice Krispie Treats made here at school under Cooking Club Leader's supervision. Cooking Club Leader prepared special batches according to the specifications for Allergic Kid and the Eldest. Allergic Kid is able to have all three items. Eldest is able to have the popcorn and the pretzels. Their portions are specially marked and available in my office, separate from the rest of the goodies.

I hope this adds to a joyous Purim for all!

HUGE thanks to Cooking Club Leader!!

Erev tov,

Assistant Head of School

Oh, yes. And lest I fail to mention it, without fanfare and much punting, the Toddles' school has also made allergy-friendly mishloach manot for the kids. All of them.

Oh, the gifts that we are given...

name that day

oh, no - I'm not doing drop-off at school today, I'm having a mental health day. I'm also not doing drop-off at preschool, nor am I baking at preschool, nor am I (for a range of reasons) reading megilla at preschool, picking up at preschool, persuading the Toddles that yes, he *must* pee and then shuttling him home, feeding and persuading him that yes, his eyes are drooping because he must! nap while I shove breakfast dishes around, argue with the idiots who didn't send us a bill for medical services but passed us to collections regardless, eat lunch (breathe) and pack a snack (breathe), then carrying a sleeping-not-quite-sleeping Toddles out the door for pickup at school.

Nope. Not me: the Man. Because, bless him, I'm finally having that mental health day. And, now that more than half of it has slid by, I'm taking stock.

What are you going to do? a friend asked. I think you should curl up with a gigantic cup of tea, and do some non-useful writing. She grinned, knowing that I would smile back. I did.

And yes, I'm doing some of that. But first, I hung hooks in the closet, organized the shelves, and did some sorting of old papers. I learned how to take apart the drain in my dishwasher, thanks to Mike, and discussed shut-off valve options with him. Preferably, non-leaking ones. Muttered while hunting for things in my tool box - okay, bag - and spent some time sorting out plumbing things that I may learn what to do with someday, and wondering what on earth this or that tool-like object actually does. For such mysteries happen when you inherit your husband's grandfather's tools. On the mental list: fix hole in wall, rehang towel bar, ask J if she knows about the oddments.

They are old, darkened wood and metal, and I wonder what the Man's grandfather used them for. He died before I met the Man, and there's a quiet blank where I'd otherwise picture him holding an odd or ment, and doing something. Calmly, relaxed and focused in ways that I think he ought to be, as the owner of these certain, poised objects. I packed them away, tetrising them back into the never big enough, locked window-seat.

It was a good morning. And now I'm tapping away, chatting with you.

As I type, one of the kids' Purim costumes (Pokemon! pirate! feathery, curling crochet!) is sitting next to me, the crochet hook stuck through. On the floor is a putty knife and some foam tube stuff that should help with the ginormous, uncaulkable cracks in the bathroom tiles, and I'll be stuffing and caulking soon. Really? the preschool director said. That's not precisely - restful - she mused, and paused. But the guy in the hardware store understood perfectly. Just got to get that done, right? He mused, and I nodded. Yep. I'll feel better for it.

A couple of days ago, I began collecting things to do on post-its. One idea was to collect and prioritize old things to do. So that they might actually get done, rather than vanishing into old day-planner pages, and resurrecting themselves at 12.30 am, when whatever it is just ain't getting done. The list stretched on and on, with things like:

* go through two boxes of memorabilia from my childhood room. Okay, one box
* finish old files in wooden box
* finish sewing a gift for a child - now well over a year past due
* finish a necklace that the Toddles designed, began, and asked me to complete.
* finish the necklace that I began and almost - almost - completed two weeks ago
* make mishloach manot food
* take measurements for work that needs doing
* hang blinds in study (note: blinds are sitting in study, waiting)
* scrub mildew in bathroom
* hang ketuba
* prep 4 things for post office run
* write 7 - no, 8? 9? - overdue emails
* call back and pester Sprint, for allowing someone to foist additional charges on our account, which we didn't ask for. wtf???
* deal with medical bills, match to EOB (explanation of benefits) and prep for MSA reimbursement
* inbox is over 1000 emails again. DO SOMETHING.
* blog. Please?
* etc

But looking at my lists, I begin to wonder. Is there a difference between a mental health day, and a clearing out of things that need to be done, but haven't yet been done day? A household maintenance day, versus a rest and think day?

What do you think?

Wednesday, February 17, 2010

snow, pajamas and a sufficiency of cupcakes

Caught by an unexpected - and worrisome - lack of grandparents, we declared today to be Pajama Day. And so it was.

It was the perfect counterbalance to the worry, and an excellent invitation for a lazy, winter day. Sprinkled with a discreet amount of laundry, dishes and general care-and-management of boys, but as lazy as solo parent, school vacation gets.

I wrote the kids a note (PAJAMA DAY! everybody sleeps in! don't forget to brush your teeth!), and eventually they read it. Considered the matter, and climbed back into bed with me. Lovingly tapped my arm, poked my cheek, bounced on my back until I woke up, muttered and went to find tea.

And came back to find the little beasts comfortably lodged in my bed. I'm reading Mister It's So Scary, the Toddles informed me. The Eldest, deep in book two of Patricia C. Wrede's Enchanted Forest Chronicles, didn't reply.
But he yanked his nose out of the book long enough to eat cupcakes. Extremely mediocre dairy ones, I should note, festooned with sadly non-dairy icing. But we forgave the mediocrity and the icing from the general kindness of our pajamaed selves.

Time to go and check your math homework, I told the Eldest. Pajamaed, cupcaked and booked, the kid glared. I don't have to check it, he informed his math-impaired mother. I know it's right. And stomped off to do a word search.

I can't find "vacation!" he wailed. I wiped dishsoap off my hands and opened my mouth. Closed it, unable to choose a response. You already did? I know how you feel? I settled on a grin, and silence.

Oh, there it is.

Sunday, February 14, 2010

love, food and files

rebel66, thanks for your comment: I hadn't realized that Sarah's article was out. Hat tip!

It was a treat to see Breeding Imperfection featured in the magazine, and odd to see my voice - and paranoia about privacy - in print. (pause. sigh. return to keyboard.) You can see Sarah's list of blogs to follow here, and hello, Imperfect blog! I'm tickled that she put it on the list, but I note that modestly, she didn't include her own. So, allow me to inform you: Sarah's blog can - and should - be found here.

So, to anyone who trailed over from Barnard, welcome.

I have an irk where St Valentine's Day is concerned, and it's probably an unfair one. I know, I know, it's a pin in the calendar, a reminder to be loving and that love will follow, and yes, that sometimes a flower or a yummy help show that you care.


But I married the chocolate allergy guy, and with the boys' allergies? it's a savoury edible love for us, and we'll try to overlook the whole Saint bit on the Valentine's Day. (um) Cobble something together? The more traditional and chocolate-enabled might want to peek at this post, by the inestimable Shauna. She includes a range of suggestions for recipe tweaks, including one that's both gluten free *and* vegan.

Good for her.

[sidebar: If you are hunting down the same path, I should tell you that I had a lovely chat with the folks at Walden Farm. They have a chocolate dip that was labelled as gluten free, dairy free, and generally looked perfect for the Toddles' preschool. Laughing at my own paranoia, I called the company anyway. Oh, said an infuriatingly calm woman. But there's egg white in the dip. We changed the label to include it. I checked my label, read off the UPC code, and noted a general, freakin' scary lack of egg white on the ingredients list. Caveat allergic emptor, people.

end sidebar.]

Admittedly, I voted for skipping the cobble-and-overlook this year. Bah, humbug to cupids with sagging diapers. Phooey, piffle and scoff.

Had we been bold enough to venture out, we might have tried a newish, nearly vegan local spot, the Red Lentil. I'd gone there with friends, shortly after they'd opened. It's a small, snug place - except for one chilly table by the door. But we found a spot near the kitchen, and admired the lavishly delicious, vegan/vegetarian/gluten-free range of foods, then applauded the dueling, invented-on-the-spot desserts that were offered to an allergic friend. The waiter lingered, explaining the provenance of the avocado dessert that he'd made, while the chef smiled, then vanished. His dairy-free, eggless panna cotta needed no interpretations. Except, perhaps, to explain how he'd made it.

(coconut? possibly Hawaiian?)
((parens of explanation: I may have Hawaii on the brain. This is entirely the Eldest's fault, as I'll explain in a future post.))

Or we could have laughed at the constructed couples-only romance of St. V's, and taken the boys with us to celebrate Starbucks' new pilot program: Lucy's cookies! Peanut, tree nut, egg and dairy-free, the cookies are also gluten-free (but contain a small amount of oats). Phooey on red roses and black dresses, let's go with the ripped jeans and a burbling group of loved ones. At a cafe. The mermaid coffeehouses might be oh, yawn for you, but consider: what can my children ingest at a cafe? A box of 100% juice, sitting at a diaper-wiped table? We can make merry with that, adding something munchable from my ginormous mom-bag, but it's giddily fun to be able to spend money on a snack.

I called the S'bx people to tell them so, startling the woman who answered the phone. Oh! I thought you were calling with a complaint. Hardly. And while I might quibble over the cost (three cookies? $1.75?), I think they've firmly claimed their niche market. Last time, I bought two extra packages - on principle.

But no, we chose to skip St. Val's altogether. Instead, we celebrated with the Eldest's first sleepover. Sitting in the study, waiting to be called by a sobbing, sleepless child, the Man and I filed old papers, talking until the wee a.m.s. I fell asleep, caught between two thoughts:

2004 sucked, people.

That was the year that the Eldest coded in the ER, turning blue, then horribly grey from a massive allergic reaction to an antibiotic sent directly into his heart.* That was the year of multiple surgeries, scrambling to learn to use the kid's veins and a bargain that was truly born of desperation. We put a needle in the kid's hand, in exchange for a needle in our own. A crazy deal, paired with an unthinkable decision to try for another pregnancy. A roiling, razored, loving year.

Of all the years, it was that year that passed through my hands on this night.

But as the phone sat silent, as the Man and I talked and wished and grinned at each other, as the sun rose on a sleeping Imperfect bed - sans Eldest, plus slightly confused Toddles - I had a second thought.

It is laughable to even type it - ridiculously obvious - but in case you didn't know that I know, this is not 2004. And with the Toddles curled, fiercely independent-needy in our bed, it's not a classic Feb 14th, either. But I'll absolutely take it, any day, as a celebration of our love.

*via port-a-cath. For those of you familiar with ports, I should note that this could have been avoidable, had a number of pieces fallen politely into place. It happens to be that the broad spectrum antibiotic that we were using - had used regularly - belongs to the cephalosporin family. And that the Eldest, scion of a family of enthusiastic penicillin allergies, was at risk for developing an allergy to it. Had we not pumped the stuff directly into his heart, had the Eldest not had so enthusiastic an immune system, had we not been exactly where we needed to be - in the ER - well. It would have been different.

And I'm still a fan of ports, if only because the icy, razoring fear of that night is separate from (balanced by?) the crucial, steady work that the port allowed; the eighteen months of teaching the Eldest's stubborn body to accept his clotting proteins. Tolerizing him incompletely, but sufficiently to allow him to play. To leave us overnight, and sleep on top bunks, shriek with laughter and tell the grownfolk to get out of the boy-room.

Thursday, February 11, 2010

exaggeration, reconsideration

But Mo-om, he's done [heinous thing] twelve times!
Well, maybe that's an exaggeration. It's been more like three times.

I'm starting to get the unnerving feeling that the nexus of my parenting is shifting, and that the important stuff is about to be what I don't say, rather than what I do say. This worries me. Babyhood required a serious flow of words from me, an articulate-inarticulate conversation between me and the little. And hey, I'm a former grad student. My preferred setting is to LECTURE. And my boys were both a wonderful audience as I poured language on their heads.


Toddlerhood was more of a call-and-response sort of thing, shifting slowly towards a more variegated range of chatter, meditative conversation, functional talk (do this, where does that go?) and quiet. The school-aged pattern, however, changes at the shift of the wind. It has invisible, wind-driven boundaries and an occasionally fierce (and infinitely vulnerable) guardian.

I don't want to talk about it.
Can we just listen to music now?
I think I'd like to just go and read.
HEY!!! You poopface, mudblood - don't do that/leave that alone/that's mine/get out of here, rages the elder sib at the younger.

But it all translates to: I need to sit in my own head. Sort things out, rebalance the weight that's shifted or been added during the day. So, could you please leave me the hell alone until I'm done?

And before I slink off, feeling useless and quietly proud of his independence, he offers me something to let me know that I don't need to offer him a resonant, superego silence: the kid's on the job.

It was just three [heinous] times.

Saturday, February 06, 2010

playing if x, then y...eventually

Fear not, Persephone: managing a food challenge is unbe-freakin-lievably slow. To prove it, I offer a conversation from November, 2009. Although honestly, all I need do is to point to the achingly slow process leading up to the maybe-it-will, maybe-it-won't work challenge.

Food allergies may be a frustratingly shifting target, but they can also be an achingly immovable one. The challenge is merely exemplary of this:

We've frozen the list, the woman at the local kid hospital told me.
Frozen? whazzat?
The backlog on the food challenges is so big, that we're not making appointments for new ones.

I nod. It takes an allergist per two kids doing challenges - and anyone who has tried booking an appointment for a regular clinic visit, knows them allergists are not exactly thick on the ground, or flush with spare time. The clinic must also supply a nurse, who will do the crucial work of making the challenge happen - and the dietician, who makes the specially measured and prepared food for the challenge. Periodically, this person is also the dietician who runs to the kosher butcher, to buy the kosher ground beef for a food challenge, and then calls you to make sure that she can use the same pans that she had bought especially for another kosher beef challenge (but they had a different symbol, she says and you nod, recognizing when you are out-frummed), and not used since. Plus a comfy room in a relaxed environment. Because if it was an un-comfy room, in a tense environment, a wise child might consider their surroundings, consider the appalling thing that they were being asked to do (go on, honey - I know I said this food would hurt you, but eat it anyway) and complain of feeling funny, an upset tummy, or some other, vaguely described symptom that would lead to getting the hockey puck out of there.

Kids are smart. But having had a taste of what allergy-less (allergy-free? bah, humbug) life might be, I'm impatient and, yes, greedy: I've had enough of slow, enough of being patient, and I. want. that. challenge. (stomps foot)

I change tactics, chatting for a bit about the logistics of the challenge, how wonderful it is that they offer such a facility, and is so and so still around? they have such a smooth, gentle touch with an IV...and did whatsername have her baby? I do want to know, but I am also ruthlessly manipulative here. But the alternative is to do the food challenge in a tiny closet of a room, with a freaking kid and a tense, too-busy staff. Oh yes, and months from now. Lose all 'round, I figure, and happily chatter about staff that I truly like, and memories that glow in my hands. Through the phone, I can hear the woman smile, appreciating that I'm not going to rain fire on her head for a situation that she did not create.

So could we stand on the end of the line? I don't mind waiting...

She offers us June, and we chat briefly about waiting lists. I wince. But I'm practical: the Geniuses in the other state, the other hospital, are having similar problems. And I won't risk a false negative - that can take a year or more to undo. So. Let's play "If X, then Y," shall we?

IF the bloodwork comes back with a low score for peanuts, for the Eldest, we have a food challenge. IF the bloodwork comes back with a low score for peanuts for the Toddles, we have two. Because a passed challenge means putting the food into the diet, and for some unavoidable logistical reasons, that means having it in the house. So, IF we have two and IF both boys pass their challenge, THEN we may have peanuts in the house. In the Imperfect house, allergy central, capital of the Land of Unlikely Allergic, tip of the arrow of Immunology Runs Amok Here.

On the other hand, having seen an anaphylactic reaction to zucchini, who am I to scorn? A passed food challenge to pumpkin, and a reaction to (oh, my that IS rare, said the junior Genius) pumpkin seeds - well, why should statistics and probabilities apply? Who better than us to be allergic to all of that, but not peanuts?

Improbable. Which is why I can brush it aside, more casual than skeptical. No, not skeptical - skeptical has an edge. And I have no edges here, I am all grace and calm. (Um, says a friend, who knew better. You sound like hell. And kindly let me splutter, then wail.) And so I say, airily, bah! Maybe we will have an IF. Maybe we'll have a THEN. And a something ever after to follow, but the IFs, the THENs, the inevitable, underlining maybes all dance on the edge of something, teetering between hope and skepticism. Grace declines to teeter, I'm guessing. Which is why grace is calm.

So, bah! Enough of possibilities and improbabilities: I have a birthday party to prepare. Starting with materials on this, because the Eldest, you know, has had a birthday. And he has a passion for a subject or three. And oddly enough, two of those has focussed on Hawaii.

But more on the birthday - and the passion(s) - later. For now: bah! And fear not, Persephone, we're not going anywhere. Quickly, anyway.

Tuesday, February 02, 2010

status: quo?

It takes some real gall to bitch about a situation that was, I admit it, perfectly fine as of oh, four days ago. No, wait - I understate - it takes some real greed to bitch about a situation that had me giggling in the supermarket aisles, six months ago.

I'm going to bitch anyway, but it's only fair to let you know that I'll also be mocking myself as I do. Possibly even laughing. Silently, so as not to interrupt the flow of the griping. And at some point, I'll be laughing too hard to keep up a serious run of bitch. But that's later.


When we last left this blog, the Eldest and I were muddling through OT-land, and weaving past fuzzy diagnoses as best we could, given the concerned parent trap clamped onto my foot. Fun, no? And then, in the midst of the muddling, bam! The non-twitter post. I know, I know and I apologize for the abrupt bam!ness of the post; the day bounced out from behind a stack of laundry and things to do, and there we were. So for those of you who are completely befuddled, here's the back story:

About six months ago, the Eldest was incredibly, ridiculously thoughtful and brave, and ate a bunch of dairy. Despite, mind you, still being allergic to it, and despite knowing that he'd stop eating, essentially, when he reacted to the stuff. This was all part of a clinical trial that is studying two questions: 1. can you be allergic to something, and still tolerate that food, if it's been heated? Heat can change the shape of a protein, and the body may be more tolerant of the protein in that altered shape. And 2., can regular doses of a tolerated form of the protein/allergen help a child lose the allergy? Reduce the severity of the allergy?

Boy, did we want to find out. And we did. You can read me musing and panicking about the trial here, see what happened on day one here, and day two here. Bottom line? We were ceilinged. The Eldest can handle some heated (very very very well heated) dairy. Preferably crispy. And he did, eating lots of crispy, non-drippy dairy for six months, with increasingly effective whines, groans and wails about the injustice of it all. Still, he hung in there, and Monday was going to be his triumphant return, after which he would be allowed to have any dairy he wanted, for one month. I'm going to have ice cream at my birthday party! he glowed, and I could not loosen his grip on that certainty. He ran off, and told all of his friends about his upcoming triumph. Maybe I can eat that, he told one kid, who was waving food at him.

And then he couldn't.

Later, comparing notes, the Man and I realized that his reaction to the boiled milk was unchanged from six months ago. We'd spent six months hoping and working, and apparently, standing still. The gain from the trial thus far? Discovering that the Eldest can eat brown, crunchy pizza, or rice pudding that's baked for 2.5 hours. A cookie with milk (but not butter) that's been baked until crisp. And that after four or so months of this bounty, the kid can make you regret any ideas you had of working up to cheesecake.

But hey: baked ziti! crisp pizza! rice pudding! bread pudding! cookies! graham sorta-crackers! When the allergy wall cracked open, we were giddy with the options. Not that we actually ate any of them - it took so bloody long to prepare the trial's prescribed foods that neither the Man nor I went dairy-crazy. And, as the months slushed past, the giddy dropped and we just wanted the prize: more. More, more, more. But we - okay, the kid - didn't get it. (internal toddler stomps foot and roars. internal adult looks on with a small smile, tempted to join in.) But please snort at our righteously indignant we wuz robbed whine - there's no real excuse for it. After all, we'd seen this pattern before, complete with Monday.

When the Eldest was maybe seven months old, I was worrying. Then researching, then arguing with the hematologists. By nine months, we all saw it: we gave the kid clotting meds, and he'd bleed at the spot where we'd infused.* Which, considering that we'd just put in something to make him not bleed, seemed kind of, oh, wrong. But the Eldest's body, not having consulted the wise grownfolk, had decided that these strange clotting proteins were too strange, and was making antibodies to them. Fighting the clotting meds off before the medicine could do anything dangerous. Full points to the body for being sensible, full points to the body for being absolutely ass-backwards. And yes, I bet you know where this is going.

We spent a frustrating year trying to tolerize the kid to his clotting meds, holding him in a (loving! I swear!) half-nelson while we infused. After twelve rather bloody months, we managed to wrestle his immune system into a teeth-gritted compromise. And spent an extra six months, trying to help cement that compromise into place. Today, he still makes antibodies to his clotting meds, but at a much lower level. Low enough that the meds work, high enough that he needs a more aggressive dosing regimen. But all in all: fine.

Allergies use a different kind of antibody than the type he produced for the clotting proteins, but the kid is the same. The determined, too-strong immune system, protecting him unnecessarily - and dangerously - is the same. Seriously? I haven't the faintest, blessed idea as to how we lost sight of that. So yeah, it was a glowing three weeks after the wall cracked. Me giggling in the dairy aisles. The kid thrilled, enthusiastic. And yep, the next four months had a fabulous view of the grindstone. And the last month or so had a pissed off kid doing the soundtrack, with a bass line of irritated, oh-come-ON-you're-so-close parent. That was six months. But it was also only six months. Or, to put it differently, it was six months in which dairy became mundane (in three specific forms, plus calipers), after six and a half years of allergy.

Never thought we'd get that.

So? Maybe history will repeat itself. Maybe it'll take another six months to wrestle the body into some sort of compromise. Maybe another six after that, to make sure that the stubborn, wriggly thing will keep that compromise. Maybe I can even persuade the kid of that, with some mixture of bribery (extra yumminess! sugar by the kilo!) and the perspective that would get him through. Maybe, it's worth it.

And maybe, in the midst of the bitching, I almost missed something crucial: today, both boys had their annual allergy clinic visit with the Allergy Geniuses. We had some fairly simple questions, and one big ooooh, maybe? The Toddles had skin-tested negative to rye recently, and made jaws drop all around. His bloodwork was pretty high last winter, said the junior Genius. Let's retest when you get here. We did a battery - a lacework - of allergy tests on the boys' arms.

The Toddles scored a big, fat hive on the rye test, with a constellation of other big, fat (yes, smug) hives.

While my internal adult joined the internal toddler - and out-roared her, thankyouverymuch - she nearly drowned out the Genius Jr's thoughtful hmmmm. (*****inserting pause to make sure that you pay very very close attention here*****) The Eldest had quietly scored a nearly-invisible mark for peas, limas, and wait - oh! oh! oh! - peanuts. Sensibly, the Toddles couldn't be bothered reacting to peanuts, and

hmmm, said the allergist. Depending on what the bloodwork shows, we may have a change in plans. How would you feel about a pair of peanut challenges?

Um. Well. Maybe - I suppose - oh, possibly we could be talked into it.

*infusion: the medication is given directly into the bloodstream.

Monday, February 01, 2010

six months later: a hope in three doses (updated 11.14 am)

(as before, this post will be updated as new information comes in.)

2.15 am: if I don't go to sleep, will tomorrow not come? Or are the sleep-deprived the only ones so silly as to think so? Tomorrow is today, anyway, and today is the day that the Eldest returns to the allergy clinic, and drinks milk. Straight up, people, down the hatch. And maybe, maybe, maybe, six months of eating this three to five times per week, that four to a grueling seven times per week, and oh, yum! those two to four times - maybe it will have worked.

Or not, and he'll have a reaction. But what if he doesn't? What if he's beaten the allergy? I'm teetering between hope and a deliberately squashing cynicism, but I'm pretty sure I know which one of the two is keeping me awake.

8.22 am: Just arrived, says the Man, and my breath catches. Okay, then. Here we go. He'll spend the next little while, I'm guessing, handing in the paperwork that charted the Eldest's every bit, sip and bathroom run for the past three days, the stack of recipes, package labels and yes, even wee jar of poop. The kid's gustatory history for the days before today will be scrutinized and detailed to a degree that astonishes me - what on earth could the clinicians hope to learn? And will they tell us?

After the skin testing, the weight, height, placing the IV (in case of reaction), etc, they'll give the Eldest three doses of boiled milk. It's the last hurdle in the trial, the kid having already passed the dairy muffin, the cheese pizza and the rice pudding challenges. If he can handle the milk, then the (dairy) world is his oyster: any and all that he wants, for one month. If not? We have no idea. But I am completely, 100% sure that I can drink the milk, the Eldest told us. And honestly, he was probably in a better position to know than we were.

8.42 am: You know, this time six months ago, I don't think I was having nearly this much fun. The Toddles, all striped pajamas and dont-cut-mah-hair-ma grins, is sitting in my lap and laughing with me over the irrepressible, wonderful Tiffany Ard. (He shares her opinion on desserts and quotation marks, by the way.) And we're arguing over the best place in the world - is it curled up in mama's arms? Under the warmest covers ever (in a coincidentally freezing room)? Or at the pool, where the Grandmere might possibly maybe take him - if, of course, he makes it out of pajamas?

The Toddles is considering the matter, he says. is america the best place to live i typed this, he muses. And yes, typed. See? Deep philosophical thinking happens best in pajamas.

He's brought six tissues to help us while we think, because we both have streaming colds. He's graciously given me three so far, and I have three! three! left, he says, delightedly. And we're killing time until the Man's next report....which is here!

8.58 am: Skin test: boiled milk virtually non-existant. Raw: smaller than hystamine! writes the Man, somewhat hystamine himself. And so am I. The histamine control tells us the baseline response to histamine i.e., how big the hives are), but the Eldest's response to dairy? His body can barely be bothered noticing it's there. Oh. My. The Eldest smiled and calmly wrote fuk and ass in Bananagram tiles, while the adults fluthered around him. Ask him if he can make "quotient," I wrote back. The Man sniffed. Already made "quarter" and "quail." The Toddles expresses his admiration by running around the kitchen, starkers.

9.45 am: Eldest says he has a scratchy throat, asked for basin. Will call in 3 minutes. When the Man calls, he tells me that maybe, the kid panicked, maybe not. The urge to vomit might have been from a sense of tradition, or a true reaction. Or the family virus. Who can tell? The Eldest, toppled from a supreme confidence into a shaking, raw bundle of nerves, is hardly going to help. They don't think it's a virus, the Man tells me. They're not sure if it's the kid, being scared. We're giving it some time - and he told the doc that french fries might help. She laughed.

10.01 am: Daddy asks: is it possible that the milk would go down better with chocolate? Jing jing! Oh, yeah! far, so good. The Grandmere, sweeping the Toddles off to play in water, pauses mid-sweep to admire the allergy team's consideration of the psych angles. I admire the determination of the chocolate-allergic dad. And yes. Maybe, we hope, it will be better with chocolate. Two doses down, one to go. The second dose - the one with chocolate - went down fine.

10.12 am: The Man calls. The third dose of boiled milk was also chocolate, and he's complaining of the scratchy throat again. We both take a moment to sigh, silently. But he managed the second one okay? Intriguing, no?

I'm getting the hierarchy here: good news = text message, wry news = text message, be on alert news = text message, bad news = phone call. Dose three (of three) is happening now, but a strong waft of anti-climax is in the air. Basin? Is that all? Pretty wimpy reaction, if you ask me. Scratchy throat - but not painful, tight, or closing? I'm caught, pulled between a sense of fierce, stubborn progress, nails dug in, holding on to some sense of perspective - and the internal toddler, jumping up and down and screeching gimme ice cream!

10.20 am: game over. The second dose was soy milk, the Man told me. And they want us to continue the protocol. I groan. The Eldest was so seriously, completely done with the muffin-per-day, he was moaning and wailing over the four-rice puddings-per-week, and willing to be brave about the pizza. Shit shit shit shit shit shit shit.

And persuading him to keep on for another six months, when he's failed the milk challenge once? Not friggin' likely.

Oh, arrgh. Hope, she be a bitch.

11.08 am: the SIL calls - do I need anything? YES. I need something to make this better. Lessee.....I have a box of Honeypot Ginger Cookie mix, and maybe we can have a Who Needs That Dairy Stuff celebration dinner? She nods, and picks up berries, popsicles and general sympathy. Plan in place, I think I can go take a shower now. Brush my teeth, maybe?

Time to admit that I can't hide in the frozen, poised for something to happen moment of waiting, and shoulder my way into the realities of the day. No dairy. Some dairy. More than we had six months ago, more than we thought possible ten months ago.

So. Here we go again.