is the Mama?
Down Under, of course!
The Imperfects have hit the road (airways?) and are currently in Melbourne, after a soggy three day trip to the southernmost tip of Australia. More later, after the sabbath, when I'm procrastinating (I have a print deadline tomorrow, and the article is currently pretty damned limp).
more soon, once I have time to type up my notes....until then, here's the email that the Eldest sent to his school friends in the Gimmel class:
Dear Gimmels,
This is me who is in Australia. We saw a wombat for the first time, when we were going into our cottage for the first day. The cottage is in Wilson’s Promontory. When we saw the wombat, we just went inside and we didn’t feed it, because that’s what the sign on the porch on the floor said: No Feeding Wombats, No Feeding Kookaburras, No Feeding Possums, No Feeding Seagulls. Yes Feeding Toddles.
[Eldest’s Mum: Wilson’s Promontory is a national park, and is about as far south as you can go in Australia. Since Australia is already very, very far south, Wilson’s Prom is extremely south! But it’s warm, and there are no penguins here. There are penguins about an hour away, but they are the kind that like warm weather.)
At night time, we saw a possum! It was outside, and another was on the hill. It was it’s buddy. The possum had a long tail, and some of it was black and some of it was brown and some of it was white. We could see it because it was very dark outside, but it was a teeny bit light. And that’s how we saw the possum.
Today, we went to Squeaky Beach. The sand did squeak! I thought it was funny. And I loved it. We saw lots of cuttlefish, and they were dead and in the sand.Once ago, the fish were there in the sea and people were all the way on the other side, but then the ocean moved to a different place, and that’s how the fish did break and die. And there was a humongous rock.
And we did lots and lots of hiking! We hiked some on Squeaky Beach, and then we went up and up and up. We went so high that some of us almost fell off the edge. NO!
[Eldest’s mum: the hiking was lots of fun. We hiked up, up, up the mountain until we could see the beach far below. Then we went through trees and ferns and moss around the mountain, until we came to Tidal River. There we went down, towards the river and crossed it on a footbridge. It was lots of different little environments, and they were all beautiful and interesting.]
I hope you are all having fun! Goodbye, Gimmels.
Thursday, May 31, 2007
Thursday, May 17, 2007
trading places
Yesterday, I fell down a flight of stairs.
I wish that I could say that this was an isolated incident, and that normally I am a graceful human being, whisking my way through life. In fact, my normal modus operandi is closer to that of a bulldozer than a swan. Nine years of ballet, and my typical approach involves a charge. I've made my peace with it, and am aiming for a sort of zen approach: if I can't stop the charge, then just lean into it and guide the energy. Sorta.
So, as I fell, I said to myself, oh, bugger. Just go with it, woman. Just go with it. This is, in case you were wondering, the advice borne of experience, which allows one to roll rather than bump, saving any number of bruises later. This voice was, alas, directly contradicted by the mama instinct, which had me grab for the Toddles. One moment my foot was on the step, the next it wasn't; one moment the Toddles was on my hip, the next he wasn't.
We flew through the air, he landing in a graceful arc on some carpet, me twisting viciously and fruitlessly to catch him. Ow. He wailed and I delegated all griping to the child, who performed admirably. Good lad, that one. Good lungs, too. A few kisses, a snuggle and a quick nursing and all was well.
This morning, I noticed a flash of purple on my lower back. Huh. Sure enough, there was a nice bruise, a couple of inches wide. Cute. Over the course of the day, the bruise grew, until it was bigger than my hand, and with a solid swelling underneath. It started to hurt when I leaned back in my chair, when I sat the wrong way, when I walked. My skirt was tight around my waist - on one side, only. Irked, I called my primary care doc's office to ask advice, and found myself looking at a nice young doctor, who backed up slightly when I offered to lift my shirt to show him the purply-red bits. He yanked my shirt down quickly, happily rotated my joints, and declared me bruised but healthy.
And here's where it got funky. I accepted his opinion because I wanted to hear it - nothing cracked or dented in the spine, sure ya crazy lady, go on vacation- but as I drove home, I realized that the majority of my brain was in rebellion. No hematoma? What is he kidding me? Did he compare one side of the back to the other? I could feel heat, solid swelling, and the bruise was growing at an impressive rate, matched only by the increased swelling beneath. Those hoofbeats may yet be a horse's, but I wasn't absolutely persuaded that a zebra wasn't involved.
A deep breath later, I called the hematologists. They listened briefly, and prescribed factor. You can give it to yourself, right? Me? Factor? I waited for the punchline. Silence on the other end of the phone, so Sure. I can have the Eldest do it - he'd love that.
And he did.
1/3rd tsp salt
Preheat oven to 400F.
Sift together (or put in ziploc and shake well) dry ingredients. Cream butter, sugar and vanilla until well mixed. Add eggs/egg subs, beating well. Add bananas, mix well. Add dry ingredients, mixing well.
Pour into non-stick muffin tins, preferably greased somehow. Fill 3/4ths full, and bake 20 minutes.
I wish that I could say that this was an isolated incident, and that normally I am a graceful human being, whisking my way through life. In fact, my normal modus operandi is closer to that of a bulldozer than a swan. Nine years of ballet, and my typical approach involves a charge. I've made my peace with it, and am aiming for a sort of zen approach: if I can't stop the charge, then just lean into it and guide the energy. Sorta.
So, as I fell, I said to myself, oh, bugger. Just go with it, woman. Just go with it. This is, in case you were wondering, the advice borne of experience, which allows one to roll rather than bump, saving any number of bruises later. This voice was, alas, directly contradicted by the mama instinct, which had me grab for the Toddles. One moment my foot was on the step, the next it wasn't; one moment the Toddles was on my hip, the next he wasn't.
We flew through the air, he landing in a graceful arc on some carpet, me twisting viciously and fruitlessly to catch him. Ow. He wailed and I delegated all griping to the child, who performed admirably. Good lad, that one. Good lungs, too. A few kisses, a snuggle and a quick nursing and all was well.
This morning, I noticed a flash of purple on my lower back. Huh. Sure enough, there was a nice bruise, a couple of inches wide. Cute. Over the course of the day, the bruise grew, until it was bigger than my hand, and with a solid swelling underneath. It started to hurt when I leaned back in my chair, when I sat the wrong way, when I walked. My skirt was tight around my waist - on one side, only. Irked, I called my primary care doc's office to ask advice, and found myself looking at a nice young doctor, who backed up slightly when I offered to lift my shirt to show him the purply-red bits. He yanked my shirt down quickly, happily rotated my joints, and declared me bruised but healthy.
And here's where it got funky. I accepted his opinion because I wanted to hear it - nothing cracked or dented in the spine, sure ya crazy lady, go on vacation- but as I drove home, I realized that the majority of my brain was in rebellion. No hematoma? What is he kidding me? Did he compare one side of the back to the other? I could feel heat, solid swelling, and the bruise was growing at an impressive rate, matched only by the increased swelling beneath. Those hoofbeats may yet be a horse's, but I wasn't absolutely persuaded that a zebra wasn't involved.
A deep breath later, I called the hematologists. They listened briefly, and prescribed factor. You can give it to yourself, right? Me? Factor? I waited for the punchline. Silence on the other end of the phone, so Sure. I can have the Eldest do it - he'd love that.
And he did.
It was odd, getting factor, though the sense of displacement was strongly outweighed by a desire to puke. Gotta love the phobias, they do have a sense of timing.
So here's the thing: I felt - feel - guilty. Why am I getting factor? Why aren't we all worried about the Toddles (who, by the way, ate his weight in pasta today and told more knock-knock jokes and generally seems just fine)? It felt somehow petty and self-dramatizing to be insisting on having the hematologists pay attention to *me*, a feeling I remember well from the first time they prescribed something, to make my nosebleeds stop. The drug worked, but I felt uneasy.
I've said (loudly) for some time now that symptomatic carriers are just women with mild hemophilia, whose diagnosis gets cluttered up by their uterus. I've said (also loudly) that such women should be treated as if they have hemophilia, and assessed. And, in the spirit of putting my veins where my mouth is, I have gone and been tested to check my clotting levels (low) and how I respond to a med. designed to boost clotting levels (DDAVP). But to actually get factor? That kind of blows me away. I'm just not sure what to do with this - and it's making me a little uncomfortable. But maybe that's the reality of forcing past a percieved role/pattern? I felt that way the first time I left the ER with the Eldest, having refused a procedure.
Damn. Like I needed a new kind of mama guilt. Still, the reversal of roles (me getting factor, the Eldest giving it to me) has supported the empowerment-driven upswing in the Eldest's behavior. With each practice with self-infusion (and, apparently, mama-infusion), the Eldest seems more confident, more tolerant of his chaotic little brother, more willing to work with his testy mama. It's a good, good thing. Obviously, he doesn't feel like his turf has been invaded by his mother, and today he welcomed me to the club. Now we can both get factor! Together! So, just possibly, it's good that the kid might be the one giving me the next two or three doses of the stuff - assuming, of course, we can get the h.c.co to ship it over to us! This 'script is for you? Are you a hemophilia patient now? I thought it was for your son, said the confused pharmacist. Roll with the punches, honey. Just roll.
*************************************
Some time ago, I wrote this post, and exclaimed over the joys of these muffins. I recall clearly the patience with which Mary Jr ate that latest offering. She needed far less patience for these, I'm happy to say, and was assisted in her role as guinea pig by a happy Toddles.
Light at the End of the Tunnel Banana Muffins
makes 12 muffins
1/2 c. margarine (be careful about colorings and flavorings!)
1/2 c. brown sugar
1 tsp vanilla
3 eggs/flaxgel subsitutes (1 Tb ground flaxseeds/flaxmeal + 2 Tb water, zapped in a microwave = 1 egg sub.)
1 Tb ground ginger
1 cup mashed bananas (about 3)
3/4ths cup brown rice flour
1/2 cup potato flour
1/4 cup soy flour
2 tsp baking powder
1/3rd tsp salt
Preheat oven to 400F.
Sift together (or put in ziploc and shake well) dry ingredients. Cream butter, sugar and vanilla until well mixed. Add eggs/egg subs, beating well. Add bananas, mix well. Add dry ingredients, mixing well.
Pour into non-stick muffin tins, preferably greased somehow. Fill 3/4ths full, and bake 20 minutes.
Tuesday, May 08, 2007
a sense of humor
In case you were wondering, today's word was made for this blog: vitiate.
*******************
Things have settled back down at Chez Imperfect, after the euphoria of the Eldest's self-infusion. Bouyed up, he tried it again a few times, and now has a batting average more appropriate to his age. I found this both a little disappointing (he's not a prodigy??) and a relief (he's not a prodigy). He, however, was undaunted, and at a recent bleeding disorder event was explaining to the mother of a 5 year old that sure, Ben can learn to do his own factor! He's five, like me, and five year olds are ready to learn. The other mum respectfully inquired as to whether the Eldest would come and offer a tutorial. He agreed, but wanted to be absolutely certain that she understood that Ben can learn it on his own, because he's five. I rather begged to differ, and pointed out that, in my tutorial sessions with the Eldest, there has been much parental supervision.
Meanwhile, the Toddles has been taking his own leaps and bounds:
In the highchair, flanked by Mary Jr. and the Mama:
Toddles: round and round! draws circles with finger.
Adult: Yes, that is round.
Toddles, with emphasis: round and round!
Mama: what's round and around?
Toddles, proudly: eyt!
Indeed, the number eight goes around and around. Good point, kiddo.
******
When not polishing his abacus, the Toddles has also been refining his sense of humor. His sense of timing is really quite good, though his sense of audience is perhaps a bit lacking - as we saw today, when he flung a handful of dirt at a co-community gardener. He laughed, she...was tolerant.
Here, then, is his first knock-knock joke:
knock-knock
who's there?
moo.
Moo, who?
moo. laughs hysterically.
In case you were wondering, this is a variant on:
knock-knock.
who's there?
impatient cow.
Impatient-
(interrupts) MOOO!
The Toddles has simply skipped the penultimate line for his part, and focused on the punchline. You'll note, however, that he's worked out which bit is supposed to be funny, and defers dissolving in laughter until that point. Clever kiddo.
Humor is a quality in short supply around here right now, as we prepare for the Great Family Vacation, a plan that has been 1.5 yrs in the making. With my grandmother turning 90, and her gift of airfare, we're trundling off on Sunday to go Down Under for most of a month. Wahoo!
It's been an uphill affair thus far: Qantas told us to stay home if we have that many allergies, TSA told us not to bring food, the home care company struggled to figure out how to ship clotting meds and medical supplies overseas, and I've organized my not-so-teensy ass off.
It's coming together. We're renting an apartment, we're borrowing a car and a million pieces of kitchen equipment, Zina lent us a baby carrier for hiking, my uncle and aunt are arranging for groceries to be waiting for us when we arrive, I've mailed hard-to-find pantry items to ourselves (which Zina collected for us), Mary Jr. worked countless extra hours while I ran around looking crazed. She quietly closed doors/ovens/shut off open flames behind me, drank endless cups of tea with the Toddles and played a version of Uno unique to her and the wee one. Hours of discussion later, I think I've explained to the h.c.co how to mail meds to us. I hope (there was still some uncertainty at the end of the day). Oh, yes, and I told TSA not to be silly, stared Qantas down and stocked up on documentation enough to stun a charging hippo - or an overeager TSA/customs person.
Man, am I wiped. But we might just be ready. Now, if only I had a birthday present for the Great-Grandmere! A year and a half, months of planning and saving and I forget that? Sigh. How (say it with me, now) imperfect.
*******************
Things have settled back down at Chez Imperfect, after the euphoria of the Eldest's self-infusion. Bouyed up, he tried it again a few times, and now has a batting average more appropriate to his age. I found this both a little disappointing (he's not a prodigy??) and a relief (he's not a prodigy). He, however, was undaunted, and at a recent bleeding disorder event was explaining to the mother of a 5 year old that sure, Ben can learn to do his own factor! He's five, like me, and five year olds are ready to learn. The other mum respectfully inquired as to whether the Eldest would come and offer a tutorial. He agreed, but wanted to be absolutely certain that she understood that Ben can learn it on his own, because he's five. I rather begged to differ, and pointed out that, in my tutorial sessions with the Eldest, there has been much parental supervision.
Meanwhile, the Toddles has been taking his own leaps and bounds:
In the highchair, flanked by Mary Jr. and the Mama:
Toddles: round and round! draws circles with finger.
Adult: Yes, that is round.
Toddles, with emphasis: round and round!
Mama: what's round and around?
Toddles, proudly: eyt!
Indeed, the number eight goes around and around. Good point, kiddo.
******
When not polishing his abacus, the Toddles has also been refining his sense of humor. His sense of timing is really quite good, though his sense of audience is perhaps a bit lacking - as we saw today, when he flung a handful of dirt at a co-community gardener. He laughed, she...was tolerant.
Here, then, is his first knock-knock joke:
knock-knock
who's there?
moo.
Moo, who?
moo. laughs hysterically.
In case you were wondering, this is a variant on:
knock-knock.
who's there?
impatient cow.
Impatient-
(interrupts) MOOO!
The Toddles has simply skipped the penultimate line for his part, and focused on the punchline. You'll note, however, that he's worked out which bit is supposed to be funny, and defers dissolving in laughter until that point. Clever kiddo.
Humor is a quality in short supply around here right now, as we prepare for the Great Family Vacation, a plan that has been 1.5 yrs in the making. With my grandmother turning 90, and her gift of airfare, we're trundling off on Sunday to go Down Under for most of a month. Wahoo!
It's been an uphill affair thus far: Qantas told us to stay home if we have that many allergies, TSA told us not to bring food, the home care company struggled to figure out how to ship clotting meds and medical supplies overseas, and I've organized my not-so-teensy ass off.
It's coming together. We're renting an apartment, we're borrowing a car and a million pieces of kitchen equipment, Zina lent us a baby carrier for hiking, my uncle and aunt are arranging for groceries to be waiting for us when we arrive, I've mailed hard-to-find pantry items to ourselves (which Zina collected for us), Mary Jr. worked countless extra hours while I ran around looking crazed. She quietly closed doors/ovens/shut off open flames behind me, drank endless cups of tea with the Toddles and played a version of Uno unique to her and the wee one. Hours of discussion later, I think I've explained to the h.c.co how to mail meds to us. I hope (there was still some uncertainty at the end of the day). Oh, yes, and I told TSA not to be silly, stared Qantas down and stocked up on documentation enough to stun a charging hippo - or an overeager TSA/customs person.
Man, am I wiped. But we might just be ready. Now, if only I had a birthday present for the Great-Grandmere! A year and a half, months of planning and saving and I forget that? Sigh. How (say it with me, now) imperfect.
****************
The tea party (see left) looks enjoyable, but occasionally carbs are in order. With that in mind...we've been eating this for the past week. I toss in cherry tomatoes, avocado, cucumber, whatever's around to freshen up the leftovers. Despite my efforts, the boys are completely fed up with it, but I'm still happy..
Rena's Marvel Mit Ze Non-Couscous
1/3rd cup olive oil
1 tsp cumin
1 c. quinoa, rinsed 2-3 times
1 onion, chopped
3 scallions, chopped (or red onion)
4 Tb fresh mint (or use dried, to taste)
2 sticks cinnamon
3/4s cup dried cranberries
2 Tb wine vinegar
1 can white beans, rinsed
Heat oil, cumin and cinnamon. Add onion and saute gently. Take off the heat. Once cool, add everything but the quinoa.
In the microwave (or on the stove), cook the quinoa according to the package directions. Add to onion-spice mixture. Toss and serve.
*******************
having fun... thanks to the DW!
1/3rd cup olive oil
1 tsp cumin
1 c. quinoa, rinsed 2-3 times
1 onion, chopped
3 scallions, chopped (or red onion)
4 Tb fresh mint (or use dried, to taste)
2 sticks cinnamon
3/4s cup dried cranberries
2 Tb wine vinegar
1 can white beans, rinsed
Heat oil, cumin and cinnamon. Add onion and saute gently. Take off the heat. Once cool, add everything but the quinoa.
In the microwave (or on the stove), cook the quinoa according to the package directions. Add to onion-spice mixture. Toss and serve.
*******************
having fun... thanks to the DW!
| What Your Soul Really Looks Like |
 You are a warm hearted and open minded person. It's easy for you to forgive and forget. You are a grounded person, but you also leave room for imagination and dreams. You feet may be on the ground, but you're head is in the clouds. You see yourself with pretty objective eyes. How you view yourself is almost exactly how other people view you. Your near future is all about change, but in very small steps. The end of the journey looks far, but it's much closer than you realize. For you, love is all about caring and comfort. You couldn't fall in love with someone you didn't trust. |
Sunday, May 06, 2007
not-so casual milestones (not for the needle-phobic)
I feel like I lean too heavily on the idea of medical impact on this blog. And then occasionally, I struggle with it.
Every kid, for example, goes through stressed out phases. Is mine different? No, said his preschool director. No, said his teachers, but (thoughtfully) most children don't have so much, um, medical excitement in their lives.
Well, no. But it's normal, all the same.
Normal, abnormal, typical, special - you got me. Picking it all apart it too hard, sometimes. Which is why we are a little in-your-face about refusing to separate these things. When the Eldest had a birthday, we celebrated. When he had his third port removed and transtioned from infusing his clotting factor into the nerveless port to the anxiety-ridden veins in his arms, well, it was a hell of a transition, so we threw one dickens (to borrow the child's terms) of a party.
A milestone is a milestone, right?
Okay, then. Try this one: the stressed out Eldest has been trying, lately, to control his world. He's failing with a certain regularity, but still, with the determination and grace that characterize so much of what he does, he's trying. His latest effort consists largely of telling his little brother what to do, an effort that inevitably infuriates them both.
Still, he persists. Reminded by his parents to play together (not on top of each other), that no! or NOOO! or NO! means that one person is directing instead of two people playing, that insert instructive variant here, the Eldest is trying to adapt, to grapple with this intended arrangement of his world, and to make it his own. That's our boy.
The banana duly perforated and infused with tap water, they moved on. She showed him (with a capped needle) how to infuse himself:
I was to be perforated next, but the Eldest and his nurse took a break, while the Eldest got his factor. Putting the tourniquet on, the nurse noted that, after five long years, the Eldest had finally grown a decent vein or two. She cocked her head slightly, and asked, Would you like to give yourself factor, together with me?
He was so excited to see the blood return in the tubing that he forgot to take off the tourniquet. It was a good, solid stick - he got the entire syringe of factor into himself, the nurse assisted so subtly that it really was his show - and I sat there, gulping quietly.
Afterwards, he was quiet, almost matter-of-fact. I was quiet, too, trying hard not to burst into proud, sad tears. The nurse was a little disappointed in us both, trying to get excitement and delight out of a pair of rather overwhelmed people.
Quiet or not, it became obvious how excited the Eldest was when he went to poke me (an odd sort of triumphant lap, true, but hey - it's an odd disorder). The kid couldn't keep still, couldn't remember the order of 'clean, dry then poke,' almost couldn't hold it together long enough to wield the needle. But he did, in a triumph almost as significant as poking his own vein. And, mind you, the needle stick was nearly painless for me, which means that he did a good job.
*****************
Bottom line?
Kid's going to be okay. Yah, he's making me want to screech right now, a lot. But who cares? (Beyond our neighbors, that is.) But he's five freakin' years old and he's learning to do an IV stick. Damn.
He's got the tools, the self-possession, the determination to be the person that he needs to be. He wants control? Fine, but we'll teach him flexibility to go with all of that tendency to be a human bulldozer. I'm calling it 'control with a plan B, C, D...zeta.'
God, I love that kid. I can't quite believe him, this strong, focussed little person. I just can't - quite - believe it. The joy that permeates these boys of ours, the strength, the focus...I just can't quite believe that it's true.
Look at the photos again. Do you see the focus? The intent look? Check again the last one - do you see the beginning of a smile? Tomorrow morning, that smile will have fully blossomed into joy. He will retell the story of his triumph to his father, his teachers, his classmates, and to several random people on the street. And why not? It's his story, his triumph.
Anyone can have tragedy, angst. It's joy that's hard.
*************************
* infusion nurse: a nurse working in the hospital or for a company that is a subcontractor with a home care company/specialty pharmacy. The infusion nurses come and do in-the-home infusions (intravenous injections of medication, such as clotting factor, even chemotherapy), educate parents, train parents/patients in self-infusion. However, not all IV nursing companies specialize, or have enough patients to specialize in clotting disorders.
The infusion nurse can be critical in how your care is delivered. A home care nurse properly trained in the use of a port-a-cath, in bleeding disorders, will likely know more about the care of ports in folks with bleeding disorders than a HTC (Hemophilia Treatment Centre). Our HTC happily acknowledges this, and keeps close contact with the home care nursing team. The home care nurse will know the family dynamic, know the realities and necessities of the individual situation, and can be a wonderful advocate for you to the HTC and home care company.
Recently, I spoke to a nurse from my insurance company, who offered to be that advocate, given access to our treatment logs. This is not at all the same thing. Leaving aside the very large question of loyalties (with the patient vs the more sensible with the one who writes your paycheck? What you do depends a lot on the answer. D'you work for the insurance company, which pays for the patient's care, or the specialty pharmacy/home care company, who bills the insurance company? Both are cutting nursing costs, the first obviously and the second occasionally and quietly. An issue for another post, though.) A nurse who has seen the Eldest's veins bruise and stay bruised for weeks can advocate for a different treatment plan, based on a. that firsthand experience and b. her nursing degree/general clinical experience. If I didn't have a HTC that trusted me, I'd need my nurses more. As it is, while I was building that trust, I relied on them heavily. To keep me sane, that is.
Takes a village, don't'cha know.
**************************
not to trivialize, but I served this for lunch, post-needles, and the Eldest loved it. So here it is:
Road to Independance Pasta Salad
serves 4-6 happy eaters
1 pkg pasta (Tinkyada pasta works for us!), cooked
2 fillets (1 pkg if buying Trader Joe's) smoked trout, sliced into strips
1 avocado, cut up into chunks
1 cup halved cherry tomatoes (more to taste)
4 sundried tomatoes (we use Trader Joe's), sliced into thin strips
4 smashed garlic cloves
1/3rd cup olive oil
2 Tb chopped dill, fresh
juice of 2 lemons
salt, pepper to taste
3-4 kaffir lime leaves
heat oil gently in a sauteeing pan, add garlic and saute until beginning to brown, over medium heat. Add sundried tomatoes and stir briefly, then remove from the heat. Let cool.
Combine all ingredients but the pasta in a large bowl. Mix gently. Add pasta, toss to combine. Serve!
Every kid, for example, goes through stressed out phases. Is mine different? No, said his preschool director. No, said his teachers, but (thoughtfully) most children don't have so much, um, medical excitement in their lives.
Well, no. But it's normal, all the same.
Normal, abnormal, typical, special - you got me. Picking it all apart it too hard, sometimes. Which is why we are a little in-your-face about refusing to separate these things. When the Eldest had a birthday, we celebrated. When he had his third port removed and transtioned from infusing his clotting factor into the nerveless port to the anxiety-ridden veins in his arms, well, it was a hell of a transition, so we threw one dickens (to borrow the child's terms) of a party.
A milestone is a milestone, right?
Okay, then. Try this one: the stressed out Eldest has been trying, lately, to control his world. He's failing with a certain regularity, but still, with the determination and grace that characterize so much of what he does, he's trying. His latest effort consists largely of telling his little brother what to do, an effort that inevitably infuriates them both.
Still, he persists. Reminded by his parents to play together (not on top of each other), that no! or NOOO! or NO! means that one person is directing instead of two people playing, that insert instructive variant here, the Eldest is trying to adapt, to grapple with this intended arrangement of his world, and to make it his own. That's our boy.
here is his attempt at combining control and teamwork. Seems to be effective, at least insofar as the block tower is concerned...
and it all came a'tumblin' down
But on to the milestone.
A few weeks ago, early into this delightful little phase, he told me that he wanted to learn to do his own infusions. I thought it over. He now has five reasonable veins, he's not afraid of needles, his hand-eye coordination is quite good...maybe. Maybe it could be done. I put him on the phone with one of his infusion nurses,* who encouraged him, praised his initiative, and then privately told me that the kid's veins are not, frankly, that good. Certainly they're famously unreliable. Why set him up for failure?
Two completely unrelated screaming fits later (by him, not me), I was perfectly willing to do so. Frankly, I was perfectly willing to do any number of things, most of which I was sure I'd regret later. This, at least, I could file under 'supportive parenting,' if in the subsection of 'vengeful.'
Today the Man was way out of town, visiting the fiercely recuperating MIL. It was also a factor day, a day when the Eldest was due for his next dose of clotting meds. However, this is now once more a two person job, as the Toddles tends to climb onto the dining table for a better view of the metal shiny pointy thing that Mama is using on his brother. Sigh.
So, I begged and a nurse turned up. We agreed: irrespective of who is giving the kid his factor, he wants to learn self infusion. Could the nurse do a training session? Certainly, they could. On me.
I'd started him off with bananas. I drew a branching vein on the latest victim, and handed it over. Solemnly, the Eldest reviewed the technique with the nurse:
Two completely unrelated screaming fits later (by him, not me), I was perfectly willing to do so. Frankly, I was perfectly willing to do any number of things, most of which I was sure I'd regret later. This, at least, I could file under 'supportive parenting,' if in the subsection of 'vengeful.'
Today the Man was way out of town, visiting the fiercely recuperating MIL. It was also a factor day, a day when the Eldest was due for his next dose of clotting meds. However, this is now once more a two person job, as the Toddles tends to climb onto the dining table for a better view of the metal shiny pointy thing that Mama is using on his brother. Sigh.
So, I begged and a nurse turned up. We agreed: irrespective of who is giving the kid his factor, he wants to learn self infusion. Could the nurse do a training session? Certainly, they could. On me.
I'd started him off with bananas. I drew a branching vein on the latest victim, and handed it over. Solemnly, the Eldest reviewed the technique with the nurse:
The banana duly perforated and infused with tap water, they moved on. She showed him (with a capped needle) how to infuse himself:
I was to be perforated next, but the Eldest and his nurse took a break, while the Eldest got his factor. Putting the tourniquet on, the nurse noted that, after five long years, the Eldest had finally grown a decent vein or two. She cocked her head slightly, and asked, Would you like to give yourself factor, together with me?She said it calmly, offering no pressure. The Eldest looked excited. Then nervous. Then determined. He cycled through these emotions, trying to understand this sea-change that was upon him. He showed the nurse how to tell from our treatment log which vein had been used most recently, and together they chose a vein. He held the needle, and...
He was so excited to see the blood return in the tubing that he forgot to take off the tourniquet. It was a good, solid stick - he got the entire syringe of factor into himself, the nurse assisted so subtly that it really was his show - and I sat there, gulping quietly.Afterwards, he was quiet, almost matter-of-fact. I was quiet, too, trying hard not to burst into proud, sad tears. The nurse was a little disappointed in us both, trying to get excitement and delight out of a pair of rather overwhelmed people.
Quiet or not, it became obvious how excited the Eldest was when he went to poke me (an odd sort of triumphant lap, true, but hey - it's an odd disorder). The kid couldn't keep still, couldn't remember the order of 'clean, dry then poke,' almost couldn't hold it together long enough to wield the needle. But he did, in a triumph almost as significant as poking his own vein. And, mind you, the needle stick was nearly painless for me, which means that he did a good job.
*****************
Bottom line?
Kid's going to be okay. Yah, he's making me want to screech right now, a lot. But who cares? (Beyond our neighbors, that is.) But he's five freakin' years old and he's learning to do an IV stick. Damn.
He's got the tools, the self-possession, the determination to be the person that he needs to be. He wants control? Fine, but we'll teach him flexibility to go with all of that tendency to be a human bulldozer. I'm calling it 'control with a plan B, C, D...zeta.'
God, I love that kid. I can't quite believe him, this strong, focussed little person. I just can't - quite - believe it. The joy that permeates these boys of ours, the strength, the focus...I just can't quite believe that it's true.
Look at the photos again. Do you see the focus? The intent look? Check again the last one - do you see the beginning of a smile? Tomorrow morning, that smile will have fully blossomed into joy. He will retell the story of his triumph to his father, his teachers, his classmates, and to several random people on the street. And why not? It's his story, his triumph.
Anyone can have tragedy, angst. It's joy that's hard.
*************************
* infusion nurse: a nurse working in the hospital or for a company that is a subcontractor with a home care company/specialty pharmacy. The infusion nurses come and do in-the-home infusions (intravenous injections of medication, such as clotting factor, even chemotherapy), educate parents, train parents/patients in self-infusion. However, not all IV nursing companies specialize, or have enough patients to specialize in clotting disorders.
The infusion nurse can be critical in how your care is delivered. A home care nurse properly trained in the use of a port-a-cath, in bleeding disorders, will likely know more about the care of ports in folks with bleeding disorders than a HTC (Hemophilia Treatment Centre). Our HTC happily acknowledges this, and keeps close contact with the home care nursing team. The home care nurse will know the family dynamic, know the realities and necessities of the individual situation, and can be a wonderful advocate for you to the HTC and home care company.
Recently, I spoke to a nurse from my insurance company, who offered to be that advocate, given access to our treatment logs. This is not at all the same thing. Leaving aside the very large question of loyalties (with the patient vs the more sensible with the one who writes your paycheck? What you do depends a lot on the answer. D'you work for the insurance company, which pays for the patient's care, or the specialty pharmacy/home care company, who bills the insurance company? Both are cutting nursing costs, the first obviously and the second occasionally and quietly. An issue for another post, though.) A nurse who has seen the Eldest's veins bruise and stay bruised for weeks can advocate for a different treatment plan, based on a. that firsthand experience and b. her nursing degree/general clinical experience. If I didn't have a HTC that trusted me, I'd need my nurses more. As it is, while I was building that trust, I relied on them heavily. To keep me sane, that is.
Takes a village, don't'cha know.
**************************
not to trivialize, but I served this for lunch, post-needles, and the Eldest loved it. So here it is:
Road to Independance Pasta Salad
serves 4-6 happy eaters
1 pkg pasta (Tinkyada pasta works for us!), cooked
2 fillets (1 pkg if buying Trader Joe's) smoked trout, sliced into strips
1 avocado, cut up into chunks
1 cup halved cherry tomatoes (more to taste)
4 sundried tomatoes (we use Trader Joe's), sliced into thin strips
4 smashed garlic cloves
1/3rd cup olive oil
2 Tb chopped dill, fresh
juice of 2 lemons
salt, pepper to taste
3-4 kaffir lime leaves
heat oil gently in a sauteeing pan, add garlic and saute until beginning to brown, over medium heat. Add sundried tomatoes and stir briefly, then remove from the heat. Let cool.
Combine all ingredients but the pasta in a large bowl. Mix gently. Add pasta, toss to combine. Serve!
the wonders of speech
Thanks to Zina, I spent bits of this past week, test-driving an Ergo carrier. Once I realized that a chest strap was, in fact, a shoulder strap (manual, need manual - ah), things went extremely well.
The Toddles and I walked with the Ergo (he fell asleep), we weeded in the Ergo (he still slept), and we went to the playground with the Ergo (he woke up), where I improvised a hat for the kid out of a bandana I had stuffed in my diaper bag.
As you can see, he found the experience one of profound gender-confusion. Or maybe he had fun.
Off? Me? I said, astonished.
Auwff! he repeated, and jabbed his finger at me, sternly.
1-2 ripe pears
scallions (optional)
leftover roasted sweet potatoes (I like to toss mine in olive oil, with paprika, garlic powder and chili powder, roast at 425F for about 40 odd minutes. I serve it as a side dish, but it's a a great salad addition!)
green lettuce (romaine is fine, red/green-leaf better)
Optional: blue cheese, radiccio, endive, napa cabbage
dressing:
3 cloves garlic, 1 tsp salt, 1 tsp sugar, 2 Tb fresh dill, 1/4 c red wine vinegar, 2/3rds c olive oil, 2 Tb water.
Whirl all but liquids in food processor until minced. Add liquids, whirl until frothy. Keeps in plastic container for 1-2 weeks, keeps just under a week in anything metal (you can put a plastic sandwich bag under a metal lid - the dressing gets a metallic tang after a while).
Slice pears, combine until satisfied with balance between fresh pear, sharp arugula/watercress and mild lettuce, any optional additions. Toss with a bit of dressing (a light hand on the dressing is good here). Serve!
The Toddles and I walked with the Ergo (he fell asleep), we weeded in the Ergo (he still slept), and we went to the playground with the Ergo (he woke up), where I improvised a hat for the kid out of a bandana I had stuffed in my diaper bag.
As you can see, he found the experience one of profound gender-confusion. Or maybe he had fun.
I have been curiously reluctant to take the Toddles to playgrounds, not because of allergies (he does tend to find all sorts of food wrappers), but because I have this strong feeling that I actually don't enjoy going to playgrounds. Still, on this warm, sunny day, ripe with Ergo-nomic triumph (sorry, couldn't resist the pun), off we went.
We were doing really well for a while: I pushed him in the swing, and taught him to say 'Weee!' Then, I chased him around a climbing structure, making admiring noises as he clambered handily up and down things, and extravagantly shocked noises when he went head-first down a tiny slide.
I was laughing at my own anti-park stance as the Toddles and I bounced on this trampoline-ish web, when he turned to me.
Aauwwff! he said, firmly, and pointed an imperious finger.Off? Me? I said, astonished.
Auwff! he repeated, and jabbed his finger at me, sternly.
Humbly, I got off the trampoline-ish thing, and stood by as he played. Oh. That's why it's not so much fun.
****************************
Making my morning coffee, I heard a loud, determined rattling sound. Eventually, I tracked it down: it was coming from the family room (aka the dining room, but who cares?), where the Toddles was trying to open a cupboard. Feeling unequal to the task, I stood in the doorway, holding my mug in front of me, protectively.
Can I help you? I asked, politely.
Tain! Tain! he shouted, pointing at the cabinet.
I opened the cabinet, and pulled out the box of train tracks. Vaguely, I was certain that he is too young for them, for the fine motor skills nedeed to assemble them, the patterning skills needed to make an effective track, but what the hell, I hadn't had my coffee yet and there wasn't a choking hazard in the box. I pulled it out.
Damn. Who knew he could do that?
*************************
Later that day, shortly before dinner, I'm flat on my back with both boys lying on top of me, laughing. From this position, I decide it's time to continue the conversation with the recently stressed-out Eldest.
Okay, kid - you have power here. (You're sitting on my solar plexus...) What do you choose?
He looked thoughtful.
If you want, you have the power to read to your brother, letting me cook dinner as quickly as possible. Or, you could play by yourself while he hangs out with me, which will slow things down a little, but dinner will get made - though probably not as quickly as you might want. Or, you could also hang out in here with me (and my -aghh- diaphragm), and dinner will probably not get cooked at all.
What do you want to do?
The Eldest barely paused.
Later, however, Mum, is dinner ready? I've discussed this with my stomach, and it says I'm starving!
Almost there, hon. I'm finishing the salad. It's got watercress and pears and roasted sweet potatoes. Now, I know that pears and roasted sweet potatoes sounds odd, but the balance of -
(cutting me off)
Oh, no! It's the 'no, not that - oh wait I like it' game. (rolls eyes and stalks off, theatrically)
Looks like my fiendish non-plan is working...hug the kid a lot, remind him of his power, as opposed to my obvious ability to rain down punishments - er, consequences - is working fine. Oh, yes, and there's one more thing I'm trying - but that's for a future post.
****************************
The Oh, No, Not That Salad
watercress/baby arugula1-2 ripe pears
scallions (optional)
leftover roasted sweet potatoes (I like to toss mine in olive oil, with paprika, garlic powder and chili powder, roast at 425F for about 40 odd minutes. I serve it as a side dish, but it's a a great salad addition!)
green lettuce (romaine is fine, red/green-leaf better)
Optional: blue cheese, radiccio, endive, napa cabbage
dressing:
3 cloves garlic, 1 tsp salt, 1 tsp sugar, 2 Tb fresh dill, 1/4 c red wine vinegar, 2/3rds c olive oil, 2 Tb water.
Whirl all but liquids in food processor until minced. Add liquids, whirl until frothy. Keeps in plastic container for 1-2 weeks, keeps just under a week in anything metal (you can put a plastic sandwich bag under a metal lid - the dressing gets a metallic tang after a while).
Slice pears, combine until satisfied with balance between fresh pear, sharp arugula/watercress and mild lettuce, any optional additions. Toss with a bit of dressing (a light hand on the dressing is good here). Serve!
*****************************
Update: the MIL continues to improve, and today the Man is visiting her. I'm glad she's now ready for her children to be with her, it says much for her state of mind. Meanwhile, the head of our home care nursing company (the employees are all amazing IV nurses, and they specialize in infusions) told me today that they see some patients dealing with neuropathy, who get infusions at home. She assured me that for many, the MIL's diagnosis is one of maintenance and care, not of steady debilitation.
Wednesday, May 02, 2007
upwards swing
Eldest update:
Well, the kid is still driving me nuts, but I've got weapons in my armory, starting with...telling him so. But with a grin (and gritted teeth, but still a grin). Today, I put on a big straw hat and did a cackly midwestern voice, pretending to be Crazy Farmer Brown. Yer drivin' me nutsh, shonny, I told him. He laughed, and laid off.
I also remembered a long standing conversation with the Man, wherein I informed him that the best response to a cranky me is a hug. He said, but when you are in that mood, the last thing I want to do is hug you! This is probably true (and possibly wise), but physical, affectionate contact does so much to remind a person that they are loved and valued that I told him to suck it up and hug me already. And so I have done for the Eldest today, and while it was by no means a great day, it was an extremely acceptable one. Until he collapsed at bathtime. Oh, well. Onwards we go.
***************
The Toddles and I went for a playdate on Tuesday morning, an experience so delightful in the Toddles' eyes that he and his playmate both were unable to eat lunch. They hopped up, ran around the patio (we were outside, in the sunshine!), and the Toddles enagaged in a popular Imperfect child pasttime: collecting rocks.
Having hauled him back to the table for the nth time, beloved rocks in his fists, I asked, 'Oh, are the rocks going to have lunch?
Grinning, he held the rocks over his plate and said, 'Num, num, num!'
Apparently, the rocks enjoyed their meal. So did I.
*****************
This has been a week of open doors. Sabbath lunch with friends, invitations to sabbath meals, and the playdate on Tuesday. During lunch at the playdate, the other mum leaned over the table to tell me that she'd gotten up that morning to find that her husband had carefully cleaned up the place, in preparation for our arrival. I spent several necessary moments staring at my plate, blinking hard.
The sea change that somehow happened is inescapable. Now a singalong veteran (of two whole sing-alongs), the Toddles walks around, singing to himself: ingle, ingle ingle ar. Ow I, ow I ow I are. Uppa bof, uppa high. Like a dimon inna sky. Ingle, ingle, ingle ar. Ow I, ow I, ow I are.
I have to smile each time I hear it.
The idea of a community of friends who make the extra effort is an astonishing one to me. The Man firmly believes that we should never ask anyone to accomodate us especially, but when people offer, well, that's different - that's not imposing on them, he says. I have a different perspective: I think that the mettle of a community shows in cases like ours. To welcome us, you need to value the connection between families enough to invite us and to take on the additional effort needed to make it work. (Translation: making it work = no ambulances. No pressure, ya know.) And you need to get past a hefty psychological barrier to do it. It's the difference between a casual stroll in the park and a week long camping trip. Socially speaking, that is.
Note: this is not an original thought, nor is it a new thought for this blog. This is just me, fumbling around to find a way to gracefully say, damn, but y'all rock - and we appreciate the heck out of you. Which is not something I tend to say gracefully (the diagnosis of hyperactive, paranoid immune system does not come with a lesson in allergy social graces. It should, but it don't). But back to the post.
My mother's panic over having us visit for Passover is a classic example - once the MIL invited us for Passover, my mother perked up. She's having you over? How? What is she feeding you? How is she managing it? Before the MIL's invitation, these were questions that couldn't even be asked. After the MIL's invitation, it was clear that someone, somewhere viewed this as a manageable effort, meaning that hosting us for Passover was a matter of details, rather than overwhelming impossibility.
In the bleeding disorder community, we trail along the edges, attending a select number of events (mostly food-free), including those that the New England Hemophilia Association makes allergy-friendly, such as their upcoming SpringFest. But we've never been to a big national meeting, never looked out at the crowds of people dealing with bleeding disorders - oh, woe wurra and woe. Or not.
It doesn't bother me much, actually, except as a point of principle that the NHF and HFA*should* accomodate us - allergic kids are 8 out of 100 children, and a community dealing with a rare disorder should be sensitive to the more common one, no? Maybe. But allergic or not, we seem to be going to a hemophilia conference - and one for a similarly marginal community, the inhibitor community.
Let's start with a quick definition of hemophilia: hemophilia is when the body fails to make one of a number of proteins needed to create a clot. Most commonly, people with hemophilia don't make any of this protein (severe hemophilia). The treatment is to replace the missing protein by injecting it into the blood. That wears off after a while, so you inject more, preventatively, or you inject it only when trying to manage a bleeding episode. End definition.
Inhibitors (briefly) are when the body makes antibodies to the clotting protein, trying to protect itself against this foreign object. Remember, most people with hemophilia make no clotting protein at all, so the body is unlikely to recognize the stuff when you squirt it in. The treatment for hemophilia is simple, and the magic bullet that is clotting factor (protein) is extremely reassuring.
Now, imagine that you were told that your kid could be temporarily normal (heh) with an injection. Feels okay, but fragile, right? Now imagine that you've had even that fragile rug pulled out from under you. Look down: do you see the black hole that is under your feet?
The Eldest had an inhibitor when he was a wee little person. His bleeding pattern was pretty aggressive, and he'd get bleeds at the sites where we'd inject the clotting factor. Imagine it: the same spot where he got the meds that were supposed to stop bleeding, and it would be inflated with blood - like little golfballs under the skin. Obviously, the factor wasn't working, and I started a six month long argument with our doctors about it. The argument ended with the Eldest having surgery (to insert something that would make it easy to give factor regularly), being diagnosed with inhibitors during surgery - not the best moment, hm? - and me swearing steadily and inventively while the hemophilia nurse practitioner sat patiently.
We got a new hematologist. And a pile of contradictory, speculatory articles from Medline and webMD that essentially said that inhibitors are under-researched and under-understood. Yay. Eighteen determined months later, the Eldest had been tolerized to accept and use the clotting protein, and we were back in business. With a quirk as a parting shot from the inhibitors, but quirks are okay.
***
In 2006? 2005? Novo Nordisk, the company who makes the (brutally expensive) stuff you use when you've got inhibitors, announced funding for research into inhibitors. They also held their first inhibitor summits. I tried to sign up, but was mistakenly told we didn't qualify. This year, I tried again.
Last week, I got a call from a nice lady who took our information, and told us that we'd be flown to the summit, picked up at the airport, and hosted at a hotel. Day care and food would be provided, and...reeling at the idea of this largesse, I interrupted politely. My boys have a lot of nasty food allergies, I explained. We thought that at best, my husband would watch them and I'd go to sessions, or most likely, just I would go and the boys would stay home. There was only the faintest pause on the other end of the phone. Well, we'd need to teach the staff to use EpiPens - do you have those? And as for food, well, could you bring some for them? Yes, I really could. I can also train your staff to use the Epis, I told the nice lady, and if you want, I can do a hemophilia 101 for them, too, while I'm at it. Without missing a beat, sure! I was told, and we were all set.
The next day, I got a call. My boss said, why are we making this woman haul food across the country? We've got a chef at the hotel, just give me your list of allergies, honey, and some foods the boys like to eat and we'll make this work for you. I gulped, and told her, you have no idea what this means to us. She laughed. These summits are all about including people who've been left out, or feel isolated. Making it work for you guys is what it is all about.
And how did she know about allergies? Well, of course I asked. Honey, recently my brother in law pulled into my driveway, having been stung by a bee. He was having the anaphylactic shock, and could only point to his leg, where the Epi Pen was. I had to figure out what that pen was and what to do with it...and wouldn't you know, he was just fine 30 seconds later? Yes, I would know.
But thank you anyway.
**************************
A brief thought for the MIL, who is now at a rehabilitation hospital, having been diagnosed with a neurological issue that badly affected her balance and certain fine motor skills. After a frightening 7-10 days, she is now relearning to walk and write, and grumps abou tthe institutional food and beds with such verve as to give me hope. She has energy and force of character, and is directing all of that, powerfully, on her recovery.
Wishing her a fierce and steady upswing...
*****************
Well, the kid is still driving me nuts, but I've got weapons in my armory, starting with...telling him so. But with a grin (and gritted teeth, but still a grin). Today, I put on a big straw hat and did a cackly midwestern voice, pretending to be Crazy Farmer Brown. Yer drivin' me nutsh, shonny, I told him. He laughed, and laid off.
I also remembered a long standing conversation with the Man, wherein I informed him that the best response to a cranky me is a hug. He said, but when you are in that mood, the last thing I want to do is hug you! This is probably true (and possibly wise), but physical, affectionate contact does so much to remind a person that they are loved and valued that I told him to suck it up and hug me already. And so I have done for the Eldest today, and while it was by no means a great day, it was an extremely acceptable one. Until he collapsed at bathtime. Oh, well. Onwards we go.
***************
The Toddles and I went for a playdate on Tuesday morning, an experience so delightful in the Toddles' eyes that he and his playmate both were unable to eat lunch. They hopped up, ran around the patio (we were outside, in the sunshine!), and the Toddles enagaged in a popular Imperfect child pasttime: collecting rocks.
Having hauled him back to the table for the nth time, beloved rocks in his fists, I asked, 'Oh, are the rocks going to have lunch?
Grinning, he held the rocks over his plate and said, 'Num, num, num!'
Apparently, the rocks enjoyed their meal. So did I.
*****************
This has been a week of open doors. Sabbath lunch with friends, invitations to sabbath meals, and the playdate on Tuesday. During lunch at the playdate, the other mum leaned over the table to tell me that she'd gotten up that morning to find that her husband had carefully cleaned up the place, in preparation for our arrival. I spent several necessary moments staring at my plate, blinking hard.
The sea change that somehow happened is inescapable. Now a singalong veteran (of two whole sing-alongs), the Toddles walks around, singing to himself: ingle, ingle ingle ar. Ow I, ow I ow I are. Uppa bof, uppa high. Like a dimon inna sky. Ingle, ingle, ingle ar. Ow I, ow I, ow I are.
I have to smile each time I hear it.
The idea of a community of friends who make the extra effort is an astonishing one to me. The Man firmly believes that we should never ask anyone to accomodate us especially, but when people offer, well, that's different - that's not imposing on them, he says. I have a different perspective: I think that the mettle of a community shows in cases like ours. To welcome us, you need to value the connection between families enough to invite us and to take on the additional effort needed to make it work. (Translation: making it work = no ambulances. No pressure, ya know.) And you need to get past a hefty psychological barrier to do it. It's the difference between a casual stroll in the park and a week long camping trip. Socially speaking, that is.
Note: this is not an original thought, nor is it a new thought for this blog. This is just me, fumbling around to find a way to gracefully say, damn, but y'all rock - and we appreciate the heck out of you. Which is not something I tend to say gracefully (the diagnosis of hyperactive, paranoid immune system does not come with a lesson in allergy social graces. It should, but it don't). But back to the post.
My mother's panic over having us visit for Passover is a classic example - once the MIL invited us for Passover, my mother perked up. She's having you over? How? What is she feeding you? How is she managing it? Before the MIL's invitation, these were questions that couldn't even be asked. After the MIL's invitation, it was clear that someone, somewhere viewed this as a manageable effort, meaning that hosting us for Passover was a matter of details, rather than overwhelming impossibility.
In the bleeding disorder community, we trail along the edges, attending a select number of events (mostly food-free), including those that the New England Hemophilia Association makes allergy-friendly, such as their upcoming SpringFest. But we've never been to a big national meeting, never looked out at the crowds of people dealing with bleeding disorders - oh, woe wurra and woe. Or not.
It doesn't bother me much, actually, except as a point of principle that the NHF and HFA*should* accomodate us - allergic kids are 8 out of 100 children, and a community dealing with a rare disorder should be sensitive to the more common one, no? Maybe. But allergic or not, we seem to be going to a hemophilia conference - and one for a similarly marginal community, the inhibitor community.
Let's start with a quick definition of hemophilia: hemophilia is when the body fails to make one of a number of proteins needed to create a clot. Most commonly, people with hemophilia don't make any of this protein (severe hemophilia). The treatment is to replace the missing protein by injecting it into the blood. That wears off after a while, so you inject more, preventatively, or you inject it only when trying to manage a bleeding episode. End definition.
Inhibitors (briefly) are when the body makes antibodies to the clotting protein, trying to protect itself against this foreign object. Remember, most people with hemophilia make no clotting protein at all, so the body is unlikely to recognize the stuff when you squirt it in. The treatment for hemophilia is simple, and the magic bullet that is clotting factor (protein) is extremely reassuring.
Now, imagine that you were told that your kid could be temporarily normal (heh) with an injection. Feels okay, but fragile, right? Now imagine that you've had even that fragile rug pulled out from under you. Look down: do you see the black hole that is under your feet?
The Eldest had an inhibitor when he was a wee little person. His bleeding pattern was pretty aggressive, and he'd get bleeds at the sites where we'd inject the clotting factor. Imagine it: the same spot where he got the meds that were supposed to stop bleeding, and it would be inflated with blood - like little golfballs under the skin. Obviously, the factor wasn't working, and I started a six month long argument with our doctors about it. The argument ended with the Eldest having surgery (to insert something that would make it easy to give factor regularly), being diagnosed with inhibitors during surgery - not the best moment, hm? - and me swearing steadily and inventively while the hemophilia nurse practitioner sat patiently.
We got a new hematologist. And a pile of contradictory, speculatory articles from Medline and webMD that essentially said that inhibitors are under-researched and under-understood. Yay. Eighteen determined months later, the Eldest had been tolerized to accept and use the clotting protein, and we were back in business. With a quirk as a parting shot from the inhibitors, but quirks are okay.
***
In 2006? 2005? Novo Nordisk, the company who makes the (brutally expensive) stuff you use when you've got inhibitors, announced funding for research into inhibitors. They also held their first inhibitor summits. I tried to sign up, but was mistakenly told we didn't qualify. This year, I tried again.
Last week, I got a call from a nice lady who took our information, and told us that we'd be flown to the summit, picked up at the airport, and hosted at a hotel. Day care and food would be provided, and...reeling at the idea of this largesse, I interrupted politely. My boys have a lot of nasty food allergies, I explained. We thought that at best, my husband would watch them and I'd go to sessions, or most likely, just I would go and the boys would stay home. There was only the faintest pause on the other end of the phone. Well, we'd need to teach the staff to use EpiPens - do you have those? And as for food, well, could you bring some for them? Yes, I really could. I can also train your staff to use the Epis, I told the nice lady, and if you want, I can do a hemophilia 101 for them, too, while I'm at it. Without missing a beat, sure! I was told, and we were all set.
The next day, I got a call. My boss said, why are we making this woman haul food across the country? We've got a chef at the hotel, just give me your list of allergies, honey, and some foods the boys like to eat and we'll make this work for you. I gulped, and told her, you have no idea what this means to us. She laughed. These summits are all about including people who've been left out, or feel isolated. Making it work for you guys is what it is all about.
And how did she know about allergies? Well, of course I asked. Honey, recently my brother in law pulled into my driveway, having been stung by a bee. He was having the anaphylactic shock, and could only point to his leg, where the Epi Pen was. I had to figure out what that pen was and what to do with it...and wouldn't you know, he was just fine 30 seconds later? Yes, I would know.
But thank you anyway.
**************************
A brief thought for the MIL, who is now at a rehabilitation hospital, having been diagnosed with a neurological issue that badly affected her balance and certain fine motor skills. After a frightening 7-10 days, she is now relearning to walk and write, and grumps abou tthe institutional food and beds with such verve as to give me hope. She has energy and force of character, and is directing all of that, powerfully, on her recovery.
Wishing her a fierce and steady upswing...
*****************
Tuesday, May 01, 2007
dancing on the edge: conflict and (some) resolution
I write a lot about the Eldest, usually under the mental heading of maternal pride and advocacy (by him or by me). But, I have to admit, right now the kid is driving me nuts.
Stark raving nutters. Up a frigging wall. Round the bend? Ha. The bend was a few kilometers and grey hairs back, my friends - it be getting ugly around here. But, being the intelligent, thoughtful person that I am (when I'm not shrieking at the child), I have analyzed the situation and come up with a few thoughts.
**************
In retrospect, it all began to surface here:
One night, at about 5 pm, I was making dinner while the boys amused themselves. Inevitably, such amusements are supervised mostly by me peeking through the pass-through and saying things like, 'okay, boys, let's calm our bodies down! It's getting a little wild in there,' and going back to whatever steaming pot/beeping timer demands my attention. Eventually, I'm hollering 'okay, guys, let's not play rough! Get off your brother's neck, please, he can't breathe!' and ultimately, stomping in to a room and calling a child by every single one of his names.
Ah, good times.
That day was typical, and the boys were scaling up the activity, frenicity (is that a word? it should be) levels. I said, calmly (okay, mostly calmly), 'Okay, kiddos, please remember that you guys tend to play pretty rough at this time of the day, and this is also exactly the time of day when you are most likely to have one of you get hurt, or end up wailing. So please be mindful of that, and play quiet games.'
We ended up in the ER, the Eldest having whacked his head on the hardwood frame of the futon while playing some game. Naturally, he was at the end of the lifespan of his dose of clotting factor, and the combination of low clotting levels plus whacking his skull that hard meant that he needed a neurological exam and probably a head CT scan.
Every single doctor who walked into our room had to stop, gulp slightly with laughter, and then sternly told the Eldest, 'no more monkeys jumping on the futon!' No, really, every single one - and some who know us, came to visit. Or maybe to deliver what they thought was an original and funny line. Couldn't say which.
Certainly, the Eldest thought this a funny line, because he laughed and wiggled and squiggled so hard that he fell off an examining table, hurting his foot and needing an icepack. Being a resilient fellow, he bounced back from this and soon invented Whizz, a game played by lying on one's stomach on the low, rolling examining stool and pushing off into open space at high speeds.
This game must, of course, be played where there are swathes of open space - the corridors of the ER? At first pass, he nearly hit a patient towing an IV pole. His second pass, he nearly knocked over his nurse. His third pass, he fell off and landed hard on his bum...and got another ice pack. I laughed with him - and then off we went to the CT scan.
The Eldest took absolute charge of the scan, and I was immensely, explosively proud. He hopped right up on the gurney, explained to the tech that he'd done this before, and picked out my lead apron. He told the tech to start the machine, me to be quiet, and lay still the entire time. In retrospect, this was a major clue.
Afterwards, he was a hero. But he was also a hero who couldn't sit still, jumping up and prowling, climbing cabinets, getting underfoot and into trouble. I watched him be unable to sit still and started to worry. Just then, the ER doc walked by. The Eldest darted out into the hall. Do you have the pictures, he asked? Yup, said the doctor, and we followed him to the staff station. There, we looked at pictures of the Eldest's brain, courtesy of the scan. The radiologist says it looks fine, the doctor told me. I'd expected as much, he continued, given how good this kid looks. Well, we're a borderline case, I said absently, absorbed in the computer screen. And those scans only catch about 5% of microbleeds, anyway. We'll give factor for the next few days, regardless. The doc paused. Oh, he said. Well, why don't I write up some discharge forms, and I'll be by to talk to you about them.
Half an hour later, the Eldest was dancing in place (having been forbidden to climb the cabinetry), and I was worried. Something was setting the kid off, and he was going to do himself some real damage. So, I wrote a note: Dear Dr. X and Dr. Attending Y. Thank you for your care. We will follow up with our hematologists tomorrow. We have no questions or concerns. Sincerely, the Imperfects.
And we left. The Eldest bounced all the way home, drumming on the balloon he'd been given, chattering a mile a minute while, exhausted, I tried not to shriek at him about shutting up.
**************************
So, what's wrong with the story? It's a good one, no? Kid has incident, parent advocates, medical system flawed, parent knows her stuff, gets them out. Okay, not before the kid gets a nice dollop of radiation, but still, not a bad story. Okay, so try this photo on the right:
Awesome, no? It was the Great Tower, which reached far, far into the heavens about the heads of its builders. Now, try this next one:
Stark raving nutters. Up a frigging wall. Round the bend? Ha. The bend was a few kilometers and grey hairs back, my friends - it be getting ugly around here. But, being the intelligent, thoughtful person that I am (when I'm not shrieking at the child), I have analyzed the situation and come up with a few thoughts.
**************
In retrospect, it all began to surface here:
One night, at about 5 pm, I was making dinner while the boys amused themselves. Inevitably, such amusements are supervised mostly by me peeking through the pass-through and saying things like, 'okay, boys, let's calm our bodies down! It's getting a little wild in there,' and going back to whatever steaming pot/beeping timer demands my attention. Eventually, I'm hollering 'okay, guys, let's not play rough! Get off your brother's neck, please, he can't breathe!' and ultimately, stomping in to a room and calling a child by every single one of his names.
Ah, good times.
That day was typical, and the boys were scaling up the activity, frenicity (is that a word? it should be) levels. I said, calmly (okay, mostly calmly), 'Okay, kiddos, please remember that you guys tend to play pretty rough at this time of the day, and this is also exactly the time of day when you are most likely to have one of you get hurt, or end up wailing. So please be mindful of that, and play quiet games.'
We ended up in the ER, the Eldest having whacked his head on the hardwood frame of the futon while playing some game. Naturally, he was at the end of the lifespan of his dose of clotting factor, and the combination of low clotting levels plus whacking his skull that hard meant that he needed a neurological exam and probably a head CT scan.
Every single doctor who walked into our room had to stop, gulp slightly with laughter, and then sternly told the Eldest, 'no more monkeys jumping on the futon!' No, really, every single one - and some who know us, came to visit. Or maybe to deliver what they thought was an original and funny line. Couldn't say which.
Certainly, the Eldest thought this a funny line, because he laughed and wiggled and squiggled so hard that he fell off an examining table, hurting his foot and needing an icepack. Being a resilient fellow, he bounced back from this and soon invented Whizz, a game played by lying on one's stomach on the low, rolling examining stool and pushing off into open space at high speeds.
This game must, of course, be played where there are swathes of open space - the corridors of the ER? At first pass, he nearly hit a patient towing an IV pole. His second pass, he nearly knocked over his nurse. His third pass, he fell off and landed hard on his bum...and got another ice pack. I laughed with him - and then off we went to the CT scan.
The Eldest took absolute charge of the scan, and I was immensely, explosively proud. He hopped right up on the gurney, explained to the tech that he'd done this before, and picked out my lead apron. He told the tech to start the machine, me to be quiet, and lay still the entire time. In retrospect, this was a major clue.
Afterwards, he was a hero. But he was also a hero who couldn't sit still, jumping up and prowling, climbing cabinets, getting underfoot and into trouble. I watched him be unable to sit still and started to worry. Just then, the ER doc walked by. The Eldest darted out into the hall. Do you have the pictures, he asked? Yup, said the doctor, and we followed him to the staff station. There, we looked at pictures of the Eldest's brain, courtesy of the scan. The radiologist says it looks fine, the doctor told me. I'd expected as much, he continued, given how good this kid looks. Well, we're a borderline case, I said absently, absorbed in the computer screen. And those scans only catch about 5% of microbleeds, anyway. We'll give factor for the next few days, regardless. The doc paused. Oh, he said. Well, why don't I write up some discharge forms, and I'll be by to talk to you about them.
Half an hour later, the Eldest was dancing in place (having been forbidden to climb the cabinetry), and I was worried. Something was setting the kid off, and he was going to do himself some real damage. So, I wrote a note: Dear Dr. X and Dr. Attending Y. Thank you for your care. We will follow up with our hematologists tomorrow. We have no questions or concerns. Sincerely, the Imperfects.
And we left. The Eldest bounced all the way home, drumming on the balloon he'd been given, chattering a mile a minute while, exhausted, I tried not to shriek at him about shutting up.
**************************
So, what's wrong with the story? It's a good one, no? Kid has incident, parent advocates, medical system flawed, parent knows her stuff, gets them out. Okay, not before the kid gets a nice dollop of radiation, but still, not a bad story. Okay, so try this photo on the right:
Awesome, no? It was the Great Tower, which reached far, far into the heavens about the heads of its builders. Now, try this next one:
Naturally, the tower came down. Natch, it was fun. But I ask you: where do you see the Toddles in these photos?
In the photo, as in real life, the Toddles faded into the background. He became a mere peon, fetching and carrying the exact block desired by the architect/general contractor in charge of the job. Subordination was not appreciated, and a lot of shrieking at the help ensued. The help, being small and frustrated, shrieked right back and clouted the self-appointed boss on the ear. Not surprisingly, I was not terribly sympathetic. I tried, though. A little.
Two days later, I gave the kid his factor at school. The other children, familiar with the routine, gathered around us, fascinated. The Eldest took them on a tour (this is the syringe, these are the gauze - don't touch them, they're sterile! - those are the alcohol wipes, and this is the needle. It's sharp, but it doesn't hurt much). He was effusive, generous, carefully making sure everyone got a turn, and completely in possession of the moment.
It got a little wierd when I asked him to take off his sweatshirt. He did, and passed it to a nearby classmate. This is my sweatshirt, he told them. You can hold it. The kid did. It's soft, the kid said, awed.
Oh, jeez. It was the Eldest Show, comments appreciated, participation required. Argh.
**************************
This all comes together in a massive control freak-out. The Eldest started showing defiance (No, you shush now, Mum!), lousy listening (this is the third time I'm asking you to - fill in the blank-), a quick anger and a general inability to pull himself out of a downwards spiral.
Putting it together, I could see the nervous energy that was driving a series of attempts to understand and manage his world. And make him look like he had to pee a lot, and make him collapse when it failed. Something - probably several somethings - was stressing him out, and he was (is!) trying to respond. His dirving need or concern was making him absolutely self-centered, unable to focus properly on other people, barring when he's shutting us out in self-defense.
Here'e my short list of suspects:
- kindergarten is coming
- the Toddles can now reach the top of the dining room table, and even do a cutely terrifying dance on it. The Eldest has lost this place of non-sibling refuge.
- the MIL has been in the hospital (she is now, thankfully, improving - but more on that later). The Eldest is worried, and is responding by not wanting to talk to her, or even write/draw her a card. He doesn't like this situation, at all.
- we are preparing to go to Australia, and the Eldest does not like big changes, even potentially fun ones
- all of the above.
According to the handout given to me by the director of the preschool, a lady who mercifully did not laugh at my collapsed and relieved face when she said that this was normal (oh, thank heavens), six year olds typically have a power struggle phase, much as they did when half the age. The Eldest may have been catalyzed into starting his early, is all.
Poor kid. Watching him struggle, I can see that this is no fun at all. From my perspective, though, it's like early training for teenager parenting. Did you hear what I said? Oh, good. What did I say? Are the ears turned on? Are you sure? What did I say? You don't know? This is the last time that I'm telling you....
Subscribe to:
Posts (Atom)