Wednesday, January 25, 2006

a quick link

My thanks to the RenReb for taking note of this:

Mars and Venus on Erev Shabbos

Kudos to the control freak!

allergy boot camp

Here we are in the last five of the eighteen minutes pre-Shabbat (what does that make me, a shabbat Mars or a Venus?), and I'm grabbing a sec to write a post that's been percolating for a couple of weeks now.

First off, welcome to my MIL who is now reading this blog. Your presence as a reader is much welcomed, and may or may not influence whether I discuss my sex life. On the other hand, I haven't to date...and now to the main event:

A little while ago, I took both boys to the allergy clinic at our local children's hospital. Alas, our allergist was AWOL that day, for the tawdry excuse of being a new, first-time dad. I was unimpressed. (I was also carrying a present for him, since he's a sweetie and we've been talking about the upcoming arrival of his baby, he's the guy who keeps my kids alive, so there's no real downside to being friendly.) Anyhoo, into the exam room comes Baby Fellow. Baby Fellow (or BF) is a young allergy and immunology fellow* who is carrying what I happen to know is one volume of my older child's three volume medical chart. He hefts this tome, and looks to me for guidance. I explain that we're here for testing and discussion of a possible pinto bean or butternut squash allergy. However, I whisper, the child in question has suddenly decided to take on a temporary (if I have anything to do about it) needle phobia, so we'd need to handle the discussion of testing carefully. With our allergist, this would have been a word to the wise, and handled accordingly. With the BF, this struck terror into his baby heart. I also explained that our allergist had agreed to take a history for our baby, to open a file if not initiate testing for a suspected dairy allergy. At this point, the BF muttered something and fled.

He returned with an attending** allergist - one whom I knew, as it happened, and who had (literally) written the book on his subject. I'd read the book, handed it out to my in-laws, recommended it to others, even watched the Arthur episode for which BSA (Big Shot Attending) had consulted. I sat forward expectantly.

BSA marched in and told us to avoid all legumes and squashes. 'This won't be a problem for you, will it?' he asked, not quite making eye contact. Aware that there was only one correct answer to this question, I nevertheless went for honesty. 'Actually,' I said, 'yes - we eat a lot of beans and -'
'You need to avoid legumes because of the dangers of cross-reactions,' interrupted the BSA, 'for example, he might react to chickpeas. Or in the squash family, he could have a reaction to zucchini.' At this point, the BF started making throat clearing noises, and muttering again. I made eye contact with the BF, and silently noted that yes, it seemed that the BSA had failed to read my son's chart, or at least the portions of which listed a number of positive blood tests for chickpea and zucchini allergy, and especially the portion that described the child's anaphylactic episode with zucchini.

I looked the BSA straight in the eye. 'I see,' I said. And tried to look compliant. Satisfied, the human bulldozer explained that no, we would not be doing testing for my older child today and oh, by the bye, the clinic was much too backed up for him to discuss the baby's dairy allergy with me. Feeling somewhat flattened, I did my best imitation of maternal road-kill and nodded. Riding the momentum of his triumph, the BSA left. The BF looked at me apologetically before fleeing, and I planned a pair of appointments...with my allergist.

As I left, the clinical assistant told me delightedly that clinic was so light today, as everyone had canceled appointments due to our allergist's paternity leave. Realizing how thoroughly I'd been squashed by the BSA, and leaned in and inquired as to whether the BSA would be working in clinic on the days of the boys' follow-up appointments. 'Oh, no,' said the clinical assistant. 'Good.' I said, firmly, and we shared a glance of complete understanding.

*a doctor who has completed internship and residency, and has chosen to do advanced training in a specialty. In this case, in allergy and immunology.

**a doctor who has completed his/her fellowship, and is now the ultimate medical authority, aka minor medical deity. Alas, these idols may also have feet of clay.

and then the doorbell rang

Yesterday, the baby and I went to my older son's school, where we taught twelve small children to play the didgeridoo. This was, as it turns out, an enormous mistake. But with a well-baby check-up and sixteen crucial errands to run, I had no time to wallow in anticipatory maternal guilt.

Bet you can see where this is going...

At 5am, the baby and I gave up on any pretense of sleep. He was a roasting 103.5, but perfectly happy to gurgle at me. I looked at the happy steamy kid and stomped down the hall to wake my partner. I delivered an impassioned and reasonably coherent rant about standard pediatric practices regarding innoculations.

By 8am, both boys were in bed with me and my partner had fled to work. I fought my way to consciousness, aware that the room was unusually warm. Nope. While the boys traded tips on converting Celsius to Kelvins, I managed the first and only sensible move of the day: I got up, washed my face and brushed my teeth. This might sound like a minor point, but heading into a day with two sick kids, I knew that the chances of my seeing my bathroom again were fairly slim.

Feed a child, dress a child, diaper one, thermometer the other, feed the first again, provide snack for the second. Thermometer for the first, dress the second, call the pediatrician, refuse to let the older one's headache panic me
(virus or head bleed?), call hematology to explain that I refuse to panic, realize that french-pressed coffee is now cold. Dose both boys with Tylenol and drink the coffee anyway, while nursing the now-furious baby and having provided the older one with books. Begin to breathe.

As I sat there, savoring my cold coffee and snuggling a baby who seemed determined to prove that yes, you can cook eggs on that, I felt a warm wetness sink in through my pajamas. I looked down and saw poop leaking through the baby's (yes, bulk-purchased) diaper, through his clothes. I readjusted him on my knee to examine the damage, thereby soaking new sections of my clothes with poop. I consulted with the child, and decided that this rated a 9.2 blowout on the baby BMO* scale. Bath for baby, shower for me, fireplace for the clothes.

It was then, of course, that the doorbell rang...

Lessons for the Mama:
1. reconsider the value of bulk diapers.
2. Stand your ground with the doctor when they suggest giving your kid five? six? innoculations at one visit. Just because they can pack three into one syringe doesn't mean there's any fewer surprises for the kid's immune system.
3. And next time, alcohol wipe the damned didgeridoo between children.

*BMO = bowel movement explosiveness

Monday, January 23, 2006

what box to choose?

With a new(ish) baby, I find myself filling out a lot of forms listing name, address, family medical history - and of course, race. Oddly enough, I tend to stumble over this one. My family is a hodge-podge of immigrants from France, Scotland, Poland, Russia, even Palestine (not a political statement - they emigrated long before it was called Israel). They all ended up in Australia - does that make us Pacific Islanders? There is no box to tick marked 'semitic,' so I am left wondering:

What is a Jew? Are we a race or a religion? The Klan aside, I suspect that we are both. I'm not sure, though, that if there was a box for 'Jewish' that I'd want to tick it. Somehow, my nebulous race should be separate from my personal religious choices...and yes, you can infer from this that I have problems with racial profiling.

So bring on the forms and their pigeonholes. Watch as the mama enjoys the failure of standardized material to describe her. And see her smile gently as, when asked about race, she ticks 'other,' and then declines to elaborate.

Here's another perspective: and another, related opinion by DovBear

d'you think he's trying to tell us something?

Two moments in my older son's life this week:

Last night, he turned to his father and said, 'when will it be Chanuka again?' His father paused, and asked carefully, 'why?' The child explained: 'I like the presents! When,' he pursued,' when will it come?' The father, working hard to maintain a straight face, explained that Chanuka comes only once per year. The father then tried to explain that Chanuka was not about presents, but was really about lights, about being with family, and about an amazing story of triumph against the odds. In the other room, the mother flung her hands up and went off to play with the baby's toes.

Lesson of the day: you can't fight commercialism. It always has a bigger budget than you do.

He's doing backwards somersaults off the sofa, he's determinedly working on getting and keeping his feet in the air, his favorite position is a yoga-inspired pretzel - d'you think he's trying to tell us something?

Yup. Someone get this kid to a gymnastics class! Clearly, it is time for the mama and the papa to sit down for one of those talks with numbers in them. And quick, before the child discovers that the stair railing is a great balance beam...

Sunday, January 22, 2006

a lazy Saturday

Yesterday was Saturday, also known as the Sabbath around here. Typically, my partner takes our older child to the shul, while the baby and I commune at home. After shul (if we're lucky with the scheduling), a home care nurse comes to help with our older child's infusion of clotting factor. This week, however, we threw caution to the winds, stayed in our pjs until about 11am, and engaged in our favorite Sabbath practices: building railroad tracks, gurgling at the baby and reading.

Here's what we read:

The mama read Fitcher's Brides, by Gregory Frost. It's a retelling of the Bluebeard tale, with Bluebeard as a charismatic preacher, predicting the end of the world. Snatches of the story keep replaying in my head, as I try to figure out exactly what made it so compelling. I am beginning to feel as if the author cheated somehow, but I invite you all to read it for yourselves and tell me what you think. I am now trying to banish it with 1491, by Charles Mann. This may not work - despite Mann's endearing style (rather Bryson-esque), his narrative requires one to be fully awake, rather than being intriguing enough to wake you up. Hmm. Maybe I should commit a maternal felony and read with a cup of coffee next to me. (What would the lactivists say?)

The papa feebly tried to read something about torts, then gave up and joined...

El nino numero uno read The Wizard of Oz, courtesy of his grandparents. He is simultaneously entranced by the lovely pictures and the story itself, and this morning chose Oz over Clifford. Wahoo!

And the baby continued perusing the pages of The Body: An Owner's Manual. Having read and enacted the sections on Rolling: There and Back Again, he now decided to simulatneously explore the sections on The Tongue: Not Just for Curling and Feet: How to Inhale Them. I'm proud to say that he is making progress in his studies, but has not progressed past grabbing his toes, though he is looking at them thoughtfully as he does. I predict insertion into mouth within the week.

And now, off to the shul we go, baby and I, for an event apparently more compelling than sabbath services: the young families' group. Topic for this meeting: sleep. As an experienced mama, I'm asked to offer my wisdom on this subject, but I will probably just sit and snigger. Because, in short, my opinion on sleep is: good luck to ya. If the kid came with a manual, then read it. Otherwise train them if you must, let them be if you can, compromise as you most likely will.


shul: synagogue, place where Sabbath and weekday services are held.

Wednesday, January 18, 2006

addressing a House

In addition to my affection for Project Runway, I also watch House. House, for those of you who have not yet tuned in, is a medi-drama about a rather abrasive yet somehow pleasing character, one Dr. House.

The doc is a diagnostician of the first water, and it is to his unpleasant self that all sorts of desperate people turn. He abuses them, calls them liars, and eventually diagnoses them. It's pretty good TV, actually.

One of House's favorite tricks is to take drugs and prescribe them for off-label uses, i.e., uses for which they were not intended or studied to prove efficacy. This is actually a not-uncommon medical practice, as I am told by a friend who is a blood banker, and finds herself handing out clotting drugs for patients undergoing surgery. Patients who, mind you, do not suffer from poor coagulation. She calls it sloppy. The Washington Post, however, is a bit more pointed in their analysis of the situation:

I've always believed that, were a cure for hemophilia to be found, it would not be found by drug companies. Their research is focussed on finding an effective product, without understanding the details, the hows and whys of the way that drugs work. Thus the collapse in gene therapy, when clinical trials found the human body to be more complex and harder to tinker with than they'd expected.

So. Different drugs work for different people - why? Children have different metabolisms than adults, women are different than men...all of this is barely considered by drug companies in their rush to the market. I owe the makers of recombinant factor eight and yes, NovoNordisk, quite a lot. And is it their responsibility to know every effect, every possible use for their drug, or is it the responsibility of the doctor who prescribes it? And if so, where does that leave the consumer - practically speaking, given that the first does not do the research and the second isn't really in a position to do so.


Tuesday, January 17, 2006

a rolling baby gathers no moss

Today, our baby rolled over for the first time. Being an enterprising little fellow, he avoided the classic post-roll face plant, by having his arms bent under him. So, instead of rolling on his tummy, only to find his face eating carpet, he rolled onto his tummy and raised himself up on his elbows. Very smooth.

Later that day, the baby's mama made a room full of hardened infusion nurses cry.

Note: the two incidents are not directly related. But then again, it's just been that sort of a day.

Sunday, January 15, 2006

fresh milk from a what-now?

I recently finished a book called _Fresh Milk_, by an Australian writer, Fiona Giles. I rarely read nonfiction, but a book about the "secret life of breasts" seemed too much for this nursing mother to pass up. Well. Reading this book was like having a completely frank discussion with your girlfriends - sort of Sex and the City meets La Leche League, plus a social anthropologist. So, cast away your Western concepts of what is or ain't taboo, and consider:

  • adoptive mothers lactating
  • girlfriends cross nursing
  • a grandmother feeding her grandbaby
  • a father nursing his daughter
  • a father choosing to lactate for his child
  • porn starring lactating women
The narratives in this book hit a wide spectrum, from the inspiring to the jaw-droppingly strange. I'm currently freshly inspired by the story of my cousin (not in this book), whose preemie twins ended up a fair distance away from her in a swanky hospital. She pumped gallons of her milk for them, and the entire family got involved in shuttling milk and mama back and forth, while caring for the older child. The babies flourished, and came home having been exclusively fed on her milk, a triumph of determination and the family's willing spirit. Go, mama, go.

I happen to adore breastfeeding, and it's a source of tremendous pleasure for me - not to mention extremely convenient. I love shortcuts like having dinner always on tap, always just at the right temperature, but I'm also aware that breastfeeding just does not work for everyone. Hell, it very nearly didn't work for me, and my personal lactation consultant was shocked that we pulled it off. So was I. I'm happy to argue that kids flourish on any kind of infant feeding, though food allergy kids, or immune suppressed babies are a bit safer with mama's milk. For the average baby, however, it's pretty much okay either way. But there's a sense of empowerment about breastfeeding that bottles don't offer - a sense that I, not some factory, made this just for my infant. Me, me, me.

(Because, yeah, it's always about me.)

Ooh, and then there's the snuggle factor: lying in bed, that little body curled into the hollow of my body, the eyes watching me seriously, the little hand stroking (my older son) or patting and grasping (our baby). The wandering hand is somehow precious to me, as if it's my baby exploring his mama from the heart of maternal comfort. Yes, breastfeeding occasionally offers me one of those peaceful, affirming moments that inspire and uplift. So what the hell is a guy doing with this stuff?

The nursing dad (vs. the guy who actually lactated and produced milk) started out of desperation. He was shirtless, the baby was cranky, she latched on accidentally. I am willing to forgive. But the father who deliberately and carefully produced milk - well, I'm thinking tar and feathers.

While do I feel so invaded? For years I've been telling my partner that if he wants to help, he should grow breasts. But perhaps he doesn't need them. The anatomy of the female breast is, as it happens, imperfectly understood. (suppressed post about modern medicine's imperfect understanding of women suppressed here.) I am told that milk ducts, when not in use, flatten to the point of vanishing. If this is true in women, why not in men? Why should the idea of the working breast be female? Perhaps only the ripely curving breast should be female, but that need not be the exclusive image of milky bounty.

But it is, dammit. And, if the story of the lactating father is any guide, it will continue to be. That father had to work hard for even droplets of his milk, and never managed enough of a supply to exclusively feed his child - just enough to participate. Which is fine by me. Bravo to you, sir, for investing in parenthood. Now get the hell off my turf.

Saturday, January 14, 2006

travelling thoughts

Some nights ago, we drove to New York. That night, fog blanketed much of Connecticut, then poured on NY/CT. Drving that night was faintly unrealistic, somewhat like a Harry Potter movie. I almost expected to see a glowing stag step out of the trees.

As he drives, my partner has a series of semi-ritualistic behaviors: he touches the back of his hand to his mouth, then his forehead, finally scratching at his scalp. Mouth, forehead, scalp, repeat. When he tires, he cycles faster through his ritual, a good cue to me to develop an urgent need for a rest stop.

So there we were: fog, rain, mouth-forehead-scalp. We came suddenly to a turn, and I felt my pulse quicken: were we prepared? Does he see it? Or is he too busy scratching the scar hidden in his hair? While I briefly and silently panicked, my partner casually turned the wheel, guiding us through. Um, right.

It made me think, as I so rarely do, about parenting. This past week, my boys achieved a cerain symmetry: the older is four years and the baby is four months. Parenting my older son was a shattering exerience - upon his arrival, he shattered any preconceived notions we had of parenting. His first and second diagnoses, along with the complications for each one, thoroughly smashed any ideas we had of what kind of childhood he'd have, or what his needs would be. for the first couple of years of his life, we repeatedly scraped ourselves off the floor and rebuilt our relationship with each other, with him, and learned to live the new life we'd been given. When he turned out to be a passionate little kid, well, it just felt appropriate.

Our baby, however, entered this world joyously, organically, after the most brutally empowering experience I've had as a mother. His presence in our lives has been affirmative, calm and unfolding. As he grows into his body, he reveals the personality that hides behind the little face and marvellous hair: interested, thoughtful, not shy about expressing his needs, but trusting us to fulfill them.

To abuse the metaphor, my older son was the sharp bend in the road on the foggy night. He came up fast, with little warning or awareness of what was to follow. His little brother, however, is my partner's hands on the wheel, calm, assured and taking us through the curve with faith in our abilities to manage whatever lies ahead. I'm holding to this image tonight, to my faith in my partner and in myself, as we manage the newest bend in the road:

the baby had an allergic reaction to the milk in my breakfast cereal.

Please note: the drive back from NY, 16 hours later, was under fine conditions and did not inspire pseudo-philosophy. The baby is fine, if a bit itchy today.

Tuesday, January 10, 2006

learn the need

It's easy to tell when a baby's interested in something: their eyes fix on the object of their desire, they work their arms and legs excitedly, and their breathing speeds up. Once, as my panting, squirming baby lunged for the breast, a friend remarked that she'd be afraid to let a creature who looked like that near her tender morsels. I could only agree. Newborns are vicious about their desires: they have no mercy, and will do their best to swallow the breast whole. When they combine this urgency with spluttering at a too-fast milk flow, it's like watching really good improv - hourly. Luckily for me, breastfeeding has been a fairly comfortable affair thus far, so my baby's aggressive love affair with my chest is a source of amusement, rather than anxiety.

As he's grown, our baby has come to own more of his body, as he learns to command his parts to do his bidding. He can now grab things, more or less deliberately, and has learned that sometimes he can make his hands hold things and to move them about. With this, we enter the era of toys. He's still pretty little, so there are very few things that he can hold on to reliably, but our little man has concieved a grand passion for a floppy yellow duck provided by the ever-thoughtful Auntie Jo, who seems to have a gift for giving my boys excellent dolls. The duck has a range of textures, from the fuzzy hair to the knobbly hands, and it has introduced our baby to a new idea: open mouth, insert toy.

Yup, the baby now literally salivates over the idea of shoving things in his mouth. If he holds it, he tries to navigate a thing's path to his mouth, where he will gnaw furiously and lovingly on the object. And all in the name of learning.

For this newly fledged person, learning is a full body affair, pursued relentlessly and at every opportunity. He mimicks my expressions, observes my interactions with others, experiments with sounds, muscle, texture and taste. Babies are keen social observers, enthusiastic scientists (hmm - maybe this time that gravity thing won't work! Oh.) and delighted artists (ooh - paint is gooey...) But this isn't so much a matter of pleasure as it is one of need, and it's a need I see in our baby's panting, his arms and legs as he struggles, yes really struggles, to manipulate himself into the path of knowledge. It's almost alarming. And then it's sad.

Where did my need, my physical, deep seated need for learning leave me? Was it sometime in first grade, when my dyslexia divorced me from the arcane mathematics being practiced on the blackboard? Or was the drift from this desire simpler and more widely spread? I do wonder if traditional schooling's approach teaches kids to learn in order to pass the test, rather than to learn in order to feed their intellectual fires. We know - I know - that kids learn in a wide variety of ways, at different paces. Why should they learn the same subject, at the same time?

Watching my baby, I envy him this opportunity. And I wonder if I can learn from him, perhaps, and recapture a bit of his passion for my own studies. Or at least preserve it for his older brother. Should I be reading more of Mr. Holt?

Sunday, January 08, 2006

and the body-count was?


Here's how it went down. A set of grandparents, bless 'em, decided to come in for an all-too rare visit. Foolishly, they mentioned this to a grandson, my nephew. The nephew went green with envy and then white with begging and then red with rage. Admiring his Italian spirit, the grandparents caved, and suggested to his auntie (me) that the child accompany them. The auntie, looking at her own, somewhat overstimulated offspring, expressed some concerns but agreed that yes, this was a cause worth pursuing. Somewhere in the middle of all of this the nephew's father called up and roared at the auntie, chastising her for lack of commitment to the cause and possible egaliatarian leanings. The auntie, now headless, growled back and went about her business.

And there we were: two small boys in the 2-4 year range, one baby, four adults. Given the adult to child ratios, this should have been pie. Um, right. The first casualty of war was a grandmaternal back. It considered the situation and decided to go out. Way, way out. The second to fall was a paternal knee. It had been valiantly struggling along for a week, sans medical care, and finally swelled with indignation and served notice. The survivors began to get nervous, and quietly assessed each other for potential areas of weakness. When the maternal hand began shrieking with tendonitis, she wisely kept the experience more or less to herself and hung in there.

And so it went. The boys played together surprisingly well, the baby developed a fondness for chewing on anything in a five foot range, and a decided appreciation for grandpaternal ties. (they are extremely good ties.) We survivors parked the grandmaternal back on a sofa with a pile of books, which she read to the small barbarians whenever they came within range. The grandfather, aka 'Saba,' even took a turn at reading, and managed to do a set of hilarious voices that made the mother flee for the bathroom, muttering something about kegels. And the grandfather and mother managed a very intense, late-night (of course) discussion about her dissertation, leaving her freshly fired up and intrigued by her own ideas. Not too shabby, Saba.

Finally, one pavlova, many dead chickens and three enormous salads later, (not to mention five pairs of underwear belonging to the visiting and newly toilet trained nephew), a station wagon filled up and drove off.

Let the healing begin.

Thursday, January 05, 2006

ruler of my domain

Whee! I am a multitasking mama tonight. My little boy is talking to his grandmother, I'm nursing the baby, making dinner and even doing a wee bit o' blogging. Damn. I impress me. The whole scenario is being managed with the skill of a juggler who has taken on at least one more ball than usual...eep.

Dinner tonight, in case you are curious, is something called 'quick cassoulet,' with hot dogs, beans, tomatoes and some spices. Like all my recipes, it starts with 'sautee a roughly chopped onion..' This might be why I am such an awful baker. Few cakes and cookies involve onions and good extra virgin olive oil. But the cassoulet is smelling nice, so I have hopes. But does one bake the mixture covered or uncovered? I suspect I'll discover tonight.

Yup, sorry Leo, but tonight *I* am queen of my world. But I do trail behind one of my favorite bloggers, the Renegade Rebbetzin. My sister in law introduced me to the RenReb, and I've been happily reading her blog for a little while now. According to the author of AnotherNYJew(another fine blog), the RenReb is actually "she who must be obeyed." I wanna be "she who must be obeyed." I wanna be able to cock an eyebrow and have my older child zip into his snowsuit, instead of huddling at the bottom of the stairs, wailing to have me do it for him because he's suddenly forgotten how. (Note: yes, he is the BKITW, but he's also a kid, with all of the nerve twanging that comes with.) So me! Me! Forget the crown, the juggling act - just fear me, ye peoples and obey. Actually, I firmly believe that my house is not a democracy - it's a dictatorship - benevolent on some days, loud (if not quite fearsome) on others.

On the other hand, if I were an object of fear, would my boys still snuggle with me? My partner still want to nuzzle my neck? I wonder how the pharoahs managed it.

Tuesday, January 03, 2006

a watchful night

4.30 pm: 100.2 F. Hmm. Older brother sits next to me on the futon, and we read books while a small, hot body seeks comfort at my breast. Hmm.

6.00 pm: 101.5 F. Rectal. Yes, I went for it - and no, he didn't seem to mind. I wrestle briefly with my conscience, then call the pediatrician's office. They tell me: Tylenol every 4 hours if he needs it, and watch for a change in behavior, and/or 103 F.

[We rarely give Tylenol around here, on the theory that if the fever isn't bothersome or a risk for dehydration, then we might as well let the body run with it. I've seen a kid who 'needed it,' and this ain't it. He's hot but comfortable.]

7.40pm: the older child, napless, suddenly dissolves into tears. To my surprise, his baby brother decides to wail in concert, if not so much harmony. Tears from my fiery first son are to be expected - the shriek from his mellower little brother is not. Hmm.

8.10 pm: I'm like a junkie with the thermometer, craving my next fix. But the baby is sleeping, and making a silly snoring sound. Better to leave him be.

9.10pm: 99.4F, says my partner. I stare at him until he admits that he took the temp under the baby's arm. I mutter rudely under my breath and stick the thermometer up the kid's butt. 101.8 F. Right, then.

10.50pm: Going to bed. Will not check on the baby, who seems to be sleeping happily. He will continue breathing without my presence in the room. I will now repeat this ten times or until I believe it - whichever comes first.

11.45: en route to bed, I check on the baby, who is sleeping happily in his car seat. He is hot, hot, hot. I debate waking him for another temp, but instead realize that I've woken his older brother, who wails the righteous wail of the interrupted sleeper. (No, mamas do not get to produce this wail, as we're boichemically engineered to be awakened, umpteen times per night. Yo! Intelligent Designer? You out there? 'Cause I want a word.) I beat a hasty retreat, and am hopefully not noticed by my partner, who comes to soothe the young lad. I crawl into bed, debating taking another temperature on the baby. Maybe I've done enough damage for one night.

12.18: I break, and take the temp. He wakes up when I poke the thermometer in his butt (is there a version of KY for babies?). 103.1 F. Jeepers. But he looks relaxed, if pink of cheek. I call the ped, get a sensible after-hours nurse who tells me that babies with this high of a fever can be seen immediately, in cases where the parents are anxious, or after a couple of days, when the parents and baby remain calm. I decide to play the role of cool, calm and collected Mama, and go to bed. With the baby, as my mantra seems a leetle shaky just now.

[We give Tylenol.]

2.03 am: the baby is cooler, sleeping soundly. I decide to join him.

4.50 am: Our older son wakes up and decides to sing, 'Old MacDonald Had a Farm.' Somewhere in the middle of an 'eeyi, eeyi, yo,' he starts vomiting.

and the universe giggles....

Monday, January 02, 2006

hemophilia and Dr. Phil - definitely imperfect!

It seems that a guy with hemophilia and Hep C was on Dr. Phil recently.
[ - click on "fighting the pain"]

In the show, he talked about the pain of joints that have had too many bleeds. Quick review: bleeding into the joint destroys cartilege, which pads the joint. No cartilege, no padding. No padding, then the bone scrapes on bone when you move - major pain. He also talked about Hep C and how it's cost him his business, the insurance nightmare of it all, and his family's wonderful support.

I'm torn. On the one hand, insurance for folks with hemophilia is a nightmare. My kid costs hundreds of thousands of dollars, and a million dollar cap is a joke to him. My partner can't get a job with a small company, because they couldn't afford a healthcare package that covers us. And insurance companies are cracking down on expensive cases like us, trying to cut costs - it's a huge problem. One insurance company offered us a nurse, 'specializing' in our disorder. She would be an advocate for us, helping us get our unique drugs and treatment costs covered. I leaped for the opportunity - and then I talked to her, and found out that I knew much more than she does about the condition, and that in fact she was there as a watchdog, and was part of a program that would give the insurers access to our treatment logs, letting them second guess our decisions, our doctors' decisions whether to treat for this bump or that bruise. Nice. So yes, go on TV and tell people about fighting with medical bills and costs.

More: this guy is part of the generation of people with hemophilia who simply got screwed. They were the first generation to have some sort of treatment for hemophilia, so they were also the first generation of severe hemos to survive it, finish school, even get married. All that hope, all that triumph - and oh yeah, HIV/AIDS and hepatitis. It's a bitter pleasure to see a guy from that generation get some airtime.

But. Something about this show sits uneasily with me. It was a plea for help, and he definitely got it, certainly needs it. But the snippets I'm finding on the Dr P website show little effort to educate, to take this beyond the focus on the individual. There are countries where hemophilia is a death sentence. There is a frightening shift afoot in the insurance world that threatens to cut costs by cutting benefits for expensive cases like ours. None of this is shown. And most of all, this guy is not my kid. And please god/goddess/resident spirits, he will never be my kid. My lucky little boy, with his artificially produced clotting proteins and his preventative if ruinously expensive care is an example of the modern hemo kid, and that figure was missing from the show. So what is the viewing public left with: Ryan White, come of age? That is not hemophilia - that's only a particularly tragic part of the story.

So, was this good or bad for the bleeding disorder community? I just don't know. But it was definitely good for the guy who was featured by Dr. P.

Here's what some of the members of the bleeding disorder community had to say:
I am the mother of a severe 17 year-old hemophiliac son and we capped out our insurance twice and now I am sweating what to do next and yes I have seen my son suffer tremendously. Now not only does he suffers bleeds but he has an emotional struggle about his future. How can hemophiliacs have bright futures not knowing if an insurance company will cover the medication you need or sweating how long until they cap out again. So I know heartache, have witnessed my son suffer but yet I am happy for David and his family.


Actually, I thought the segment was really lame. Here's a guy on national TV with a chance to shed some light on the issue of blood safety and the experience of the hemophilia community and he blows it. How about the dude taking cash for all the crap he got and donating it for a cure? After all,the dude had a daughter which makes her an obligate carrier. I feel sorry for the guy for being so caught up in his own shit that he wrote asking for help only for himself. The dude is still married, has a family, is walking, has product... far from some of the crap the rest of the hemophilia community is experiencing. What better way to shed light on the horrors of the American health care system. "David" blew it.

Who is to say which family dealing with hemophilia needs monetary assistance more then another. As the mother of a son with hemophilia, I know it ravishes my son and all his dad and I can do is continue to pay the bills so he can continue to get factor. It is a helpless situation but we do what we have to do. I may never travel around the world or have new cars or even go a month without a medical bill but I have my son and that is what is important. If the guy on Dr. Phil did get a gift, then good for him, enjoy and help others when you can.

All quotes reproduced with permission from the authors.