Monday, December 27, 2010

and the weather outside is - well, you know.

 Welcome to winter. We're knee-deep in this winter business here, and the wind is amusing itself by carving pretty patterns in the evidence - once it's turned our cheeks the traditional cherry-red, of course.  The boys tucked themselves up in my bed, with a library's worth of books and a grandparent, while my shovel and I worked on a peace treaty. Preferably before the ice sets in, making negotiations impossible.
Whoo, said the Toddles, watching the steam rise from my hair. It must be cold out there.

After two hours of being one with the snow shovel? Um. Yes.

Inside, however, we were warm. And, where that warmth needed a boost, there was a recipe for crystallized ginger. And oh, ginger has such a fresh, springtime scent when peeled, that it was just what we needed, while the wind roared past the windows. Fresh, crisp ginger peeled from the mandoline, and steamed its way to tenderness.

A half-hour later, the ginger had simmered in sugar water, mellowing into translucence.
Admittedly, the first time I'd made this recipe, I had managed to make a delicious crystallized ginger. This time, some quirk left us with a ginger-embedded toffee. Which, surprised, I poured onto a baking sheet and let cool. The piece that clung to my thumbnail, trailing threads of toffee, was fiery and sweet and wholly impervious to the carving, cold wind outside.
But I'm gonna need a hammer to crack anything off that mass in the baking will be worth it, the grandparent predicted. And proved herself right.

Note: the boys would like you to know that they are too wise to touch the stuff. Instead, they ate their body-weight in oatmeal coconut cookies (the recipe simplified by an all purpose GF flour mix) and considered the warming merits of a justly waged war. They took this photograph to illustrate, complete with the shadow of the Toddles, who was experimenting with the Dark Side of the Force.

And yet, outside, it was cold.

Sunday, December 19, 2010

frost and a photographer

What are you doing?
I'm taking a photo of this leaf.
But you only got part of the leaf!
Ah. Maybe I misspoke - I'm taking a picture of the frost on this leaf.
Oh. Can I take pictures, too?
Not now. We have to go to preschool.
Well, then can I take pictures while we drive to preschool?
Oh. Well, sure. But you can only press this button, and keep your fingers away from this bit, here - see? that's the lens and if you - kid? Are you listening?
[waving off the question] Thanks! I'm going to take pictures of - Mum. I can't take photos while you are talking at me. Could you please drive the car instead?

[mutter, mutter] late [mutter] [vroooom]

In the back seat of the car, the Toddles produced the sorts of sounds that happen when a well-brought up, mellow hum is introduced to an enthusiastic, cheerful chatter at a cocktail party. And occasionally, a metallic, consumer-preferred click of the camera informing us that a photo had been taken.

Ah, said the Toddles, with a deep satisfaction. There I am.

And there. Part of me, at least.

And here is what I see - but, he paused, not really. He thought this over.
Pressed some buttons, ignoring the warning rumbles from the front seat about [mutter, mutter] don't mess with that -  and then, click!

Yes, said the Toddles, thoughtfully. I do see that.

And that is in my eyes.

And I can see it being in my eyes - there.

I can only guess that, at this point, the kidlet refocussed internally, and so -

Tee, hee! giggled the Toddles, and the front seat called out, and clap't the shutter to? and was - rightly - ignored.

Throughout the drive, the Toddles click!ed and quietly murmured and hummed to himself. Click by click, he was trying to catch his world, check his own perspective, and build the pieces for his own, Toddleist purposes. But perhaps my favorites came after we stopped the car, and paused in a parking lot.

Here, the Toddleisms are fragmentary, detailed - but rich.

I'm here! the Toddles told the camera. Thanks for coming with me to school.

It was our pleasure, kidlet. Thanks for inviting us.

Thursday, December 16, 2010

okay, someone explain this to me?

At the National Hemophilia Association's annual meeting, a poster described the results of a study comparing plasma derived factor IX (pdFIX) and recombinant factor IX (rFIX), in terms of allergic reactions.  You can read about it here. 88 patients with factor IX deficiency, or hemophilia B, were given the pdFIX, and 163 patients were given the rFIX. The researchers looked to see the prevalence of allergic reactions and the development of antibodies, called inhibitors, that inhibit (hyuck, hyuck) the function of the protein in the system. Or, stop the protein from working at all.

Which, for the severe cases, takes you right back to where mama nature dropped ya. No clot, no dice.

I'm intrigued to see that there really wasn't a difference in the outcomes - 4 from the pdFIX group and 3 from the rFIX group developed inhibitors, and 7 had allergic reactions; 4 from the rFIX group, and 3 from the pdFIX group. But here's what has me gaping:
Potentially serious allergic reactions including anaphylaxis and the development of inhibitors -- antibodies that can neutralize replacement factor -- are uncommon but do occur and often concurrently, the investigators explained during a poster session at the annual meeting of the National Hemophilia Foundation.

From a purely personal note, well, duh. Allergy Boy (a.k.a., the Eldest) developed inhibitors and his first food allergy, roughly at the same time. Years later, we started asking questions about immunology, and not surprisingly, the hematologists admitted to being out of their depth. We found experts at a conference on inhibitors, and asked: allergic reactions are usually IgE mediated, but what kind of antibody is the inhibitor?
How does it work? Is there a relationship between the two processes? The inhibitor experts shook their heads, or looked doubtful. But, absolutely! an immunologist told my mom, and years later, researchers are studying the two as a pair, as you can see here.

The field has come a long way, baby, but this link between allergy and inhibitor remains a teasing, odd note. Interdisciplinary research, anyone?

More immediately, perhaps, what implication does this finding have for the management of hemophilia B? And specifically, if inhibitors and anaphylaxis tend to go together, are there specific implications for families with a history of allergy - or, I suppose, inhibitors? Should they keep an EpiPen on hand when they administer fIX?

Inquiring minds would really rather like to know...

By contrast, however, the following press release required no explanation:
Tofutti recalled 25 pallets of the Tofutti Yours Truly dessert, for possible dairy contamination. I could not find any information about the recall on the Tofutti website, however, which is surprising. Or, well, not. I admit to sighing the sigh of the unsurprised - my experiences with Tofutti has left me unimpressed by their level of education regarding food allergies.

Wednesday, December 15, 2010

a few loops of yarn - and new FA guidelines!

It's been a long day or three, despite a sunlit 40 minutes today with Nicole Snow's yummy recycled (and fair trade!) sari yarn. It's a slim, pleasantly random mix of fibers from sari fabrics, and is obligingly turning into a toddler's hat. Or so I hope.

(For those of you who are interested, I'm adapting one of the free Lion's Brand patterns, this one for the Elfin Baby hat. I've corkscrewed the hat's tail, and am using half double crochet instead of single, to accommodate the yarn's tendency to twist. The stitch count is still 1:1, even with my changes, although I added a chain of 15 to the initial chain stitches to make the corkscrewed tail.)
Eventually, though, I had to put down the yarn and go be a parent. Not that my efforts in this direction were terribly appreciated today, but alas, the Eldest was due to find some way to balance the wonderfulness of the parent-teacher conference.

Even so? oy.

So here I am, procrastinating on a last bit of editing that I need to do, and grumping. And, with a hat tip to Jenn, I ended up doing some verrrry dry reading in the place of the much less dry editing. But oh, worthwhile. The National Institute of Allergy and Infectious Diseases has released the new guidelines for the identification of allergies and their management. At last, a set of best practices for diagnosis - testing! standardized! finally! - and allergy management. Although I do note the deft ducking of the really tricky management questions, about outside of the home or clinic, still, ya gotta respect the rest of it.

Here's the summary, in tidy poster form. And the Wall Street Journal's article, with my favorite quote, It's especially hard to pinpoint a true food allergy in young children with eczema, since they make IgE antibodies to many foods. "If you did 100 food tests, all 100 would be positive. That's what we see from patients coming in from around the country," says David Fleischer, an assistant professor of pediatrics at National Jewish Health in Denver, which specializes in allergy and respiratory diseases.

Damn straight.

I did note that the NIAID's recommendations for managing anaphylaxis reaction seems to have removed antihistamine from the list of first response options for patients and parents, explaining that The use of antihistamines is the most common reason reported for not using epinephrine and may place a patient at significantly increased risk for progression toward a life-threatening reaction. Hm. Looks like it's time to put a call in to our allergy team, and to ask them if we should update the boys' allergy action plans...

Tuesday, December 14, 2010

c'est ci n'est pas une post - nor is it a recipe

Dear brain,

would you please shut up about the To Do list? Some of us would like to stop staring at the unscalable mountain, and get some frickin' sleep, Sir Hillary.

sincerely, body

Dear body,

sucks for you, don't it? Just complete one more item on the List, and then - maybe - you can sleep. It'll just get longer if you don't, you know.


Brain, go re-read your How to Get Things Done books. Don't you know that if I don't get sleep, then you don't get to be effective in accomplishing your goals? And how much do you think you can get done, anyway, with me chanting, tiiiiired, tiiiiiiiired, tiiiiired, tiraliralay in your ear, hmm?
just one more thing? Come on, you know you can.

Note to self: post the tomato-and-black-bean soup recipe, before my mother drives over here, to wrest the thing from my shaking hands.

oh, cripey. She's already called twice this afternoon. Oh - augh - okay.
Further note to self: how the hell did I make that soup, anyway? There was a recipe, but it had little impact on the outcome. My failure to repeat the miracle is not heartening.
oh, you bastard.
P.S. I accept chocolate as a bribe. So, I suspect, do you.

Despite my mother's very reasonable request, what follows is a recipe in narrative form. With apologies to the grandmaternal.

For nearly 14 years, the Man has accused me of hidden mathematical talents. Now, while I have a number of remedial math teachers who still insist on hiding under their beds, I'm fairly certain that I could assemble a rebuttal. And he would reply with one, inarguable fact: I have a bad habit, when under pressure, of forgetting that my brain should probably be allowed to operate my mouth. And that at times like that, I do tend to come out with surprisingly accurate calculations.

Or, to put it differently, I fail to think in grand style. I may even be good at it.

I would not be so petty as to describe a visit from my parents as a pressurizing experience, but I will admit to a bad habit of over-hostessing. I get into the groove, cook too much food, and fail to use my leftovers until after they leave, at which point we [sic] joyously laze my way through days worth of not-having-to-cook dinners. Lego with the boys, endless and minute Star Wars narratives, yarn and oh, storytimes both on paper and on limited engagement, This Night Only! Which is only encouragement to keep it up, printing reams of recipes I might cook before they come, testing one, two, and then oh, the pleasure of watching the fresh, ooo-yum produce come in, and the steaming/tossed/mmm/crunch/smell-that food go out. Can't beat it, from any angle.

But it is a bustle. So, I prep: beans to soak, things to defrost, sous chef work that the Man can do? mixes of dry ingredients that we can have ready? Always, there is more to prep than we could possibly manage - therefore, regardless, the bustle.

And there you go, background aplenty. And here it is:

A Bustled Black Bean-Tomato Soup
serves 6, unless you can manage otherwise.

I based the recipe on Martha Rose Shulman's Black Bean and Cumin soup, from the NY Times Recipes for Health. So,
2 tb olive oil
1 medium onion, chopped - oh, heck, 2? 3? onions, and finely chopped
4 large garlic cloves, halved - or, hey, just smashed with the side of the knife, and then peeled
1 dry cup of black beans, unless you've forgotten to soak and boil and ooops, so 1 big can of ready to roll black beans and thank you, Goya, for that nice ring pull lid because where on earth did the can opener go? I'm going to need it for the - oh -
14 oz can of tomatoes, and there's no ring pull on that one. Fine, then 2 cups of fresh tomatoes (so there!), chopped with love and a bah, who needs that canned stuff.
6 cups water, except that I am so very, very awesome and have finally learned that awesomeness is based on listening to my friends who tell me things about how easy it is to keep the ends of my carrots and the limp stalk of celery and the clean peels of my onions and turn them into broth. See? I listened. And while you might cavil at my awesomeness, I now have 6 cups of veggie stock, simmered slowly for 2.5 hrs. So neener, neener, neener, I'm using stock instead of water.

No, I'm not sneering.

Oh. I'm especially not sneering - toasted cumin seeds? ground? Um. Oh. [casts about kitchen]

Note to the reader: from here, there are one of two choices. Either, my previous, slightly self-mocking note about mathematical genius (did I say genius? okay, functionality. happy now?) is correct, and what I cast, I will reap with gustatory pleasure. Or not. And we send out for pizza. Or possibly, send my parents out for pizza, none of which comes in a suitably supervised kosher, Imperfect-able format.

I cast about, and find Chloe Coscarelli. Her vegan panini had won a contest in March, beating out any number of very very non-vegan contestants. And I had a recipe for this panini, including a spiced chickpea masala - and oh. A jar of turmeric, cumin, cinnamon, cloves - oh, no, I skipped the cloves, and used allspice - and cayenne - no, wait, I used chili powder. Right.

[thank you, Chloe]

Except that, oh, hm. I add a bit of cinnamon, and another bit of cumin. Sniff. Yes, that's better. I need the equivalent of 2 tsp of the I'm-not-gonna-do-that toasted cumin seeds, except how much is that when ground? No clue. Okay, let's go for 1 Tb of spice mix. But first, saute the onions, let them brown - add spices, yes! now! garlic? in it goes - and sniff the pot.


Oh, yes.



Okay, how about a dash of the barbecue spice mix from my wonderful Nicole Routhier? I just rediscovered her Fruit Cookbook on my shelf, and I made some fish on Friday - oh, okay, here we go. Her barbecue spice mix is definitely going to be a happy camper at this singalong, um, okay, here it is:
1 Tb cumin seeds, 1 tsp coriander seeds, 1 Tb brown sugar - o, was I supposed to pack that? bah - 1 tsp ground cinnamon, 1 tsp grated orange peel (yeah, because who has tangerines lying around, I asks youse), .5 tsp salt and .5 tsp fresh black pepper.

I close my eyes and reach for what might possibly be the tablespoon measure. Toss. Add the beans, tomatoes, broth - ha, ha! - and



6 bowls, 6 people herded to the table, 1 smaller one re-herded, then lifted and plonked down in front of salad and yesssssss, say the people. We all stare sadly at the empty pot. How unfair of the pot to be empty, and whose idea was that, I want to know. What's in it?

Oh, cripes, say I, and realize. I have no idea. Later that week, sniffing, I will still have no idea. And my mother, considering her options, will realize that her best chances of another bowl do not lie in letting me off the hook. 
Dear brain,
well, there you go. I still think you are going to be in the crapper for this one. Did you really call this a recipe?
thanks for your concern, but I have already taken steps to alleviate the situation. Do note the slightly erudite
(yet informative) post title, which should offer fair warning as to the limitations of that which is being offered here.
Oh, sure. But she's still going to kick your medulla, dude.

But what do I care? I'm going to sleep.
Dear limbic and frontal lobes,
please, please, please be gentle. Also, do accept this nice basket of fruit.

Monday, December 13, 2010

a marathon in an alcove

The photo that I would have - should have - taken today, was of the view that I had at roughly 2.15pm: two arms, stretched on their respective chair arms, each equipped with an IV. One was solidly wrapped in gauze, a rather stolid affair, complemented by the large rectangle of the board used to keep the elbow straight. The other was rather laissez-faire even with the board, with a hint of gauze near the IV, sliding under the skin with little more than a blush, or possibly a Tegaderm to cover it. Blocky and relaxed, the arms' owners stretched out in their chair, admiring Luke, as he battled his father.

There's good in you yet, said the hero, and we admired his idealism, while hoping he'll be really, truly fast on the defense. (And he was.)

We do an annual, day-long test at the hospital, studying the way that the Eldest's body responds to his clotting medications. For a variety of reasons, the Eldest's is not a typical drug, meet person, person, meet drug relationship. He tends to bash his clotting protein up a bit, argue a bit, and then settle down into a functional relationship. The pattern has held stable for the past five years, and with any luck, will continue - and be predictive only of his approach to molecular structures of limited size.

Judging from the second arm in that alcove, and the day's Star Wars marathon, it is. Stretching out my own legs, smiling at the other arm's mother, we mamas settled into our own alcove. A couple of feet away, a voice commented on how badly Palpatine had aged, while another muttered agreement. And a good thing rippled outwards from the shared IVs, into a better thing.

It's good to have a mellow day, relaxing in a freshly redesigned alcove and cosy armchair. It's better yet to share that day with a friend. And best yet, with a blood brother.*

And that is the photo that I wish I had taken. Dang, blast and blergh. Instead, the photo that I was able to take today was this one:

Many thanks to the chef(s) of the Children's cafeteria, who rescued an embarrassed mama who'd somehow provided two lunches to one child. The other, lunchless child, feasted happily on a fresh batch of french fries, made in a a closed kitchen with specially prepared, Imperfectly allergy-friendly deep fryer. I'd like to think that my ample supply of orange juice, cherries and crisp apples helped make today a gustatory pleasure, but let's be honest: fries? with appalling globs of ketchup? rock.

And so does Bill, who made them.
*men and boys with bleeding disorders call each other "blood brothers." For any number of reasons,whether the loneliness of the rare condition, or the ragged remains of the post-HIV/AIDS bleeding disorder community, the term is a particularly poignant one. Of course, the guys also call each other "bruisers," which goes to show that poignancy can only be sustained for so long, before - no. Better not to go there.

Sunday, December 12, 2010

a wince, a wheeze

Oh, BlogPress, won't you let my postlets go? You've gone and eaten a picture-rich Chanuka post, written expressly for the absent grandparents, and hello? Greedy guts? Chanuka's over.

(grump, grump, grump, grump)

Oh, but who can stay grumpy when the kid's turning red and shuddering with laughter at my elbow? It is apparently beyond hilarious that, after being corralled by his domineering mother, he forgot - and crocheted ten stitches in the wrong direction. Think of a dash, written on top of a long pair of parallel lines, and then add momentum. Reaching for the next set of loops, the kid had to wrangle himself into a pause long enough to figure out what had happened. Laugh with me, he's inviting. I'm absurd, I'm contagiously ridiculous.

And now he's toppled over. And is writhing with silent, percussive laughter on the floor. I do believe that I'm being invited to pause, and admire his commitment to the role. Yes? Ah. Yes.

I'm happy to beam at him, as much for his own pleasure in his humor, as for the kid as a whole. Oh, but it's been a good few months for the boy. A year and more of things starting to fall into place...lessee. Need a narrative starting point, um - ah.

About 18-20 months ago, our car was periodically noisy. The Eldest would get in, pause, explode. Cause? bah, said the explosion. Causes are for lesser minds in search of a trigger for moments of emotional emphasis. 

Right, said the mama. And learned that one cannot duck effectively while wearing a seatbelt. Nor while keeping an eye on the road.

When the explosion was on coffee break, the car would be offered the dulcet tones of the whinge. My seatbelt's too tight, we'd be informed. Or, failing that, my shirt is too tight on me - why do you buy such things? Fists would fly in the back seat, the whinge would climb towards a shriek, and the mama towards a roar. Oh, it was a grand, grand time. And in the classroom, it was no better.

Let's talk about behavior, the teachers would say. He's definitely a class clown, but the trouble is that he doesn't - stop. I ended one parent-teacher conference with my head in my hands, and a teacher reassuring me, but we still love him! and thinking, sure. For now. And on the day when I was requested to take the kid home, after an out-of-control episode, I sat in the car, staring at the Eldest.

What happened?
The kid looked at me, his eyes clear and troubled. I don't know.
I looked back, searching, and found only that I believed the kid -  and realizing that, wavered on the edge of tears. And so did he.

When we leveled the asthma question at the doctors, at the kid, it was a wavering, wobbly one. The kid's lung capacity was 100% of the expected capacity for a child his age and size. But there it was, the tight chest, the rapid, gasping breath, the sudden snaps of irritability and nervous energy. Anxiety can make things worse, said our pediatrician, thoughtfully, and we all nodded. So can patterns, habits of emotional response, I mused. And internally, quailed. Anxiety is an old friend, and a squishy, oozing one. Hard to get a grip on the dude, but he's always lurking and at least familiar. But not, in our lad, pathological. Diagnoses carry their own burden, but they can also set you free - giving tools specific to that diagnosis, tested Things To Try, and that crucial short list of Things That Just Suck. I considered oozy, slippery ordinary kid stuff, and weighed it against the crush and weight of the diagnosis. And rather preferred the medical to the mundane. Did we get to choose?

Maybe. Maybe not.

What if it is anxiety? What if it isn't? The allergist and pediatrician urged us to try a month-long course of preventative asthma medicine. A couple of puffs of the inhaler in the morning, a pair at night. Tracking his lung capacity each time, looking to see if the big dips in capacity drop as the month goes one - and as the kid relaxes. We hesitated for a long pair of months. Steroids, even in low doses - daily? And yet, prophylactic medicine is something he knows, something that he's seen us trust to control bleeding. Can he let himself trust prophylaxis to control breathing, as well?

He could. And hugged his lung capacity measurements, the p'flometer, he called it, using them to reassure himself that all might just, possibly be well. A few weeks later, those lung capacity numbers trailed into relative unreliability. pphhhht, blew the kid, and rolled his eyes. And PUHPHHHHHHHHHTTTT! blew the kid. Thanks for the data points, the Man sighed, and tossed a third of them. But nobody could argue with the jump. His lung capacity increased by 42.2% (saith the Man), and we all stared. He's making his own rules again,  I muttered.

And grinned.

The teachers smiled back, politely puzzled. He's the class clown, they told me, and waited to see if I winced. I did, dropping my head onto one hand. But he can stop when he needs to, they told me. And his sense of humor is really quite good. Inexplicably, I began to choke. Swallowed. Resisted the urge to wheeze. There are class clowns who aren't funny? A twinkle from the teacher on the end of the table, and, oh, she said gently. Oh, yes.

And winced.