Wednesday, December 24, 2008

Cardiac Christmas

Hope saw the two most important people yesterday: Santa and her cardiologist. She was ho-ho-hum about Santa, but kicked, giggled and waved her arms for the cardiologist. The girl's got some suspect priorities.

But maybe she was on to something. The cardiology appointment is a biggie. We've worried about it for weeks, in our familiar way. First, we deny and refuse to discuss. Then, as it approaches, we feel sick to our stomachs and paralyzed by dread until we're in the waiting room thinking, "Oh God, we're going to spend Christmas in the hospital."

It's not the ideal strategy, but so far, so good.

And it sort of works: Hope's appointment went well. Her heart is still a bit abnormal. She has a narrowing of her aorta, which could be suggestive of a mild coarctation. Some blood appears to be flowing a wee bit faster than it should, which could lead to other problems down the road. But not now. Her numbers are great. Her heart is working as it should. There's no change from seven months ago.

In short, good news. We don't have to see the cardiologist again for nine months.

Merry Christmas indeed. Phew.

Friday, December 19, 2008

Friday, December 12, 2008

A parable of poop

The call came precisely at 4:50 p.m., EST, on Dec. 10.

"We have a breakthrough," Mo reported.

Cue the joyous exultation.

As if we needed a reminder, we learned again this week that all of life revolves around poop (except perhaps those pesky 65 years or so between toddler-dom and seniorhood.)

We had, plainly, a poop emergency. Hopesy hadn't taken care of the TCB since Saturday. Granted, there was one mere nugget on Monday. Beyond that: Lots of moaning and groaning and writhing and ughhing, but four days without satisfaction.

What had we wrought? We broke the cardinal rule of regularity: consistency. We switched Pediasure to Pediasure with fiber, and then fed her an organic chicken baby food she'd never eaten. We strayed from the routine of only switching one foodstuff at a time.

Bingo, bango: Disaster and restless nights. We tried prunes. We force-fed Milk of Magnesia. We begged and cajoled. But during stretches like these, bowel movements have a way of dominating life and conversation.

"Say ... do you think the tragedy in Mumbai is an outgrowth of failed colonialism or an inevitable flare-up of tribalism?"

"I can't believe she hasn't pooped."

"If I do say so myself, that $700 billion bailout sure seems like money well spent. Cheerio, Congress!"

"Smell her diaper. Has she pooped?"

"An army of aliens is swelling at the front door, singing Christmas carols that only Anne Heche can understand."

"Why won't she poop?"

On and on it went. Already saddled with a nasty cough, poor Hopesy would strain so hard tears streamed down her cheek. During a visit to the doctor, she made odd guttural sounds that vaguely replicated the mating call of a libidinous right whale.

Finally, relief came. Hope huffed, puffed and blew ... OK. Enough with the metaphors. We shared our plight with old friend Dr. Spitenup.

"Had you considered suppositories?"

We had one reaction: Duh. Thirteen months on, we're still slow on the uptake on this parenting thing.

Monday, December 8, 2008

Knock on wood

This is the 100th post of 2008. I probably should write something profound, about the continual comfort of the community we've found through the blog or the cathartic effects of being able to occasionally unburden -- and perpetually make yahoos of -- ourselves.

All are true. No doubt. But I've got nothing. And that's great.

When we started the blog 13 months ago, we didn't know what we were in for. Hope's health seemed dodgy. We were astounded we got to take her home from the hospital, and then terrified by the prospect of taking care of her alone. We worried about surviving a winter of seclusion. Her heart issues seemed so grave we didn't dare verbalize them. We feared the future -- not only the prospect of life with CdLS, but getting so far ahead of ourselves, beyond the immediate crisis, that we could even have the luxury of far-flung fear.

In short: perfect material.

Good news for us, bad for the blog: As it always does, life seems to have rocked itself into an equilibrium. We have the same concerns and worries we always do. We still visit the same roster of doctors and have the same over-arching concerns. They just don't keep us awake like they once did. Sometimes -- coin over shoulder, pat Buddha on the belly -- life seems downright mellow.

It's been trending that way for a while, which is good. Hence three months of videos recreating Lulu eating hearing aids, mashups with Scooby Doo and imagined debates. It's caused no small amount of angst, chin-scratching over the direction of the blog and occasional publish-or-perish paralysis. During my most self-important moments, I've asked: "Oh no! Have I run out of things to say?" as though I'd once dispensed pearls of wisdom worthy of Mao's Little Red Book.

But then I remember what a kid told me once in high school detention: "Don't take yourself so damn seriously. Let's party."

Such encouragement sent me on a 12-year spiral of cigarettes, beer and video games, but the point remains: We have fun with the blog and are grateful we've found a small corner of the Internet. We're blessed to connect to so many CdLS families and honored so many folks still care. As Mr. T says, the rest is just jibber-jabber.

And of course, as Mo ruefully notes, I've probably jinxed us for life by proclaiming things to be easy as Sunday morning. As we've learned the hard way, there's a lot worse in life than a lack of material.

Sunday, December 7, 2008

Sniffle, sniffle

My mother used to tell me we get sick when we can afford it. Forget germs. Forget hand-washing: Colds only strike when we let down our guards and -- uh oh, look out, sneak attack -- those nasty viruses sneak up and bop us in the nose.

I'm still not completely sure what she meant, but I've repeated the homey axiom for years and even believed it in a weird, kizmit-meets-karma kind of way.

Well, we let down our guards. The first snow has fallen and the whole house is sick. Hope has some serious snot and a cough worthy of a pack of Salems. I'm walking around the house with wads of toilet paper stuck up my nose. They cut down on tissues, and Mo thinks it looks sexy. She's feeling a bit better, but was blowing her nose like the Boogie Woogie Bugle Boy from Company C. Lulu is lying around, hound-doggedly, barely interested in Hope's soiled diapers.

Amazingly, this is the first time we've all been sick. Last year, when Hope's health was more precarious, we avoided any ailments. Going by my mother's standards, that's probably because we absolutely, positively couldn't afford to fall ill. Or it could be that we were germ-phobes worthy of Howard Hughes, rarely left the house and insisted or surgical masks and gloves at the first sign of a cold.

We've since slackened, of course, and this episode is a healthy reminder that we need to get back with the program. Thankfully, Hope seems to be in a good mood and only slightly cranky, but we're also aware that she's a 9+ pound 13 monther and our margin for error is slight. She's again getting a monthly Synagis shot, the super-expensive antidote to ward of the RSV infection.

So it's back to hand sanitizer, vigorously sterilizing toys after kids touch them, massive doses of Vitamin C and, for good measure, hot toddies for everyone.

Wednesday, December 3, 2008

Holiday siesta

Hands down, no question, ask us again and we'll roll our eyes and utter juvenile remarks, Thanksgiving is our favorite holiday. Some of the appeal is the simplicity, aw-shucks goodness of eating good food with loved ones and the lack of pretense about the day.

Much of it is comfort from the Groundhog Day-like sameness of it all, year-in, year-out.

Wake up late. Eat. Look at the circulars. Half-heartedly discussing shopping on Black Friday. Laugh at the nonsense of the prospect. Eat. Turn on the parade. Don't watch it. Eat. Watch the Lions humiliate themselves. Turn it off. Dress. Head to dinner. Sit around. Yum-yum, turkey. Mmmm. Seconds. "Oh no, I shouldn't." OK, thirds. Pie. Coffee. Sit around. Give thanks. Let's play a game. No, honest, we won't argue this year. Keep promise for 10 minutes. Argue. Laugh. Huggy-huggy. Happy happy. "This was the best Thanksgiving ever." Sleep. Wake up. Uh Oh. Everyone is sick.

So it was once again this year, and perfectly so. This time, there was a twist: Hope didn't get sick. (Knock on wood, rub rabbit's foot, toss salt behind shoulder, Beetlejuice, Beetlejuice, Beetlejuice) Everyone else did, at least for a little bit. And we extended Thanksgiving with a long weekend up north, hence the blog break and .... introducing ... snow girl.

We think she dug it.

Sunday, November 23, 2008

To Nicholas

In Michigan, these days, doom is inescapable. Pick your cliche: Rolling fog, tidal wave, ship careening toward the rocks, plague or pox, despair has become an entity, an awakened Golem on the march to wipe away life as we've known it.

The Big Three is dying. Deputies taped foreclosure notices to the house two doors down. The value of our home has crashed. Friends have lost their jobs. I haven't opened a 401k statement in months.

We do well if we only worry about the economy and discuss our fears -- and options, such as they are -- once a day. We rarely succeed. I tell myself it's an abstraction, numbers on a page, nothing more than worry.

And sometimes, like yesterday, I'm reminded that's all it is.

A little boy we never met named Nicholas died. He was 4. He has CdLS. His parents thought he had a cold. They put him to bed. He didn't wake up. Mo found out through a Yahoo discussion group about the syndrome.

She was crying when I got home.

"I don't care if our house is worth nothing," she said. "I don't care if we lose our jobs. I just don't ever want to lose Hope."

The night Will died, we held him and made certain promises. Chief among them: We would never forget what's really important. We've tried. We haven't always done as well as we could. Sometimes we need a reminder.

So thank you, Nicholas. Rest in peace. Our deepest sympathies.

Wednesday, November 19, 2008

Updates galore

In newspapers, you get blamed sometimes for failing to follow through.

Big splash on the front page: "THIS GUY IS A DIRTBAG!" Then, nine months later, the case winds its way through the machinations, memories fade, the news trudges forward, more scandalous dirtbags emerge, follow-ups get fewer and farther between until -- woopsie daisy -- a blurb is printed on page 43B reading: "Allegations of alleged dirtbaggery allegedly could be unfounded, prosecutors allege."

Critics call it a conspiracy by dirtbag newspapers to rake muck. I say it's human nature: Crises and scandal always get more attention than process, minutia and murky outcomes. When the answers aren't always clear-cut or better than you initially feared, it's even easier to forget the initial problem.

This blog is no exception. In that vein, here's some answers to issues that no longer loom as large as they did a few months ago and some that do.

The spitting of blood: Once a weekly nuisance, it's faded considerably in the past few months but hasn't disappeared. For about two months this summer, Hope would wake up crying. We'd rush into her nursery and see her laying next to a pool of dried blood. We did two endoscopies to pinpoint the problem.

Old pal Dr. Spitenup concluded it stems from her hernia and stomach rubbing against her esophagus. His solution: Well, it stinks, but it doesn't bother her, so live with it. We investigated on our own and believe it was exacerbated by supplemental oxygen fed through her nose as she slept. We have a good friend with cystic fibrosis who uses oxygen. She reasoned that the oxygen dries out her nasal passages, leading to blood that Hope swallows, and then eventually spits up.

We stopped using the oxygen at night. Viola. No more blood twice a week. But the issue persists. A few weeks ago, Hope awoke coated in a mammoth pool of blood so old it was black. We think it was from the rubbing of the hernia.

The eyesight: Six months ago, Hope's eyesight was tested as a matter of routine. The opthamalogist, a kindly, geriatric fellow who inhabits a wood-paneled office that looks like a hunting lodge and I'll call Dr. Speakupsonny, found that Hope was extremely near-sighted and would need glasses when she turned 1. We were crushed. We always thought that, given her hearing issues, it was highly unfair she'd have to wear hearing aids and glasses.

We had a follow-up appointment on Election Day. Dr. Speakupsonny found that her vision has improved, but she'll probably still eventually need glasses. We return to the hunting lodge in six months.

The laryngomalacia: Hope wheezes when she breathes because her larynx is floppy. It's a fairly common, and mostly benign, condition that most kids outgrow by about eight months. She hasn't. That's probably because she is so small. At the rate she's growing, it could be an issue for another 2-3 years. This remains a cause of concern because she could have a very difficult time breathing if she catches a bad cold. Once again, this year, she is having the monthly Synagis shot, the uber-expensive shot to ward off RSV (a respiratory virus) that is recommended for preemies. Dr. Frosty also worries that she's expending so many calories breathing that Hope has a harder time gaining weight. There is a surgery to correct the issue. We are exploring it.

The teeth: Six months ago, I foolishly wrote a blog item proclaiming that Hope was teething. She still could be. But there is little evidence of it. Children with CdLS take forever to cut a tooth. The tooth fairy got tired of waiting by the door, checking her watch and tapping her feet, and was last seen speeding away in a used K Car, listening to, of all things, "'99 Luft Balloons."

The heart: Learning my lesson from the teeth, I am declining substantial comment. For about two months, soon after her birth, this was our biggest concern about Hope. Six months ago, we were told the situation looks good. We have another follow-up appointment soon. I ain't saying another word.

The Dice-K: For weeks, Hope's favorite friend in God's green Earth was a teddy bear of Red Sox pitcher Daisuke Matsuzaka, also known in this age of lackluster nicknames as Dice-K. Lulu ate the doll. My sister faithfully mailed a duplicate. Alas, love is fleeting at a tender age and Hope's affections have wandered. Her new love: Big plastic cow on wheels.

The cutie: I am doing fine, thank you very much. And Hope is getting cuter by the day.

Tuesday, November 18, 2008

Small side of tiny

One year into raising a special-needs child, we're realizing the worries never go away. Sometimes, they're more prominent than others. Sometimes, they rotate. But they're always lurking, ready to leap up, grab your lapel and say, "don't get so comfortable."

We're still not sure what to do about Hope's weight. She's about 9 pounds at 12 1/2 months and is stubbornly clinging to the 10-15 percentile in the CdLS growth chart. It's a chart that is heavily skewed toward small, so she is on the small side of tiny.

So far, we've erred toward caution and non-intervention because her height and weight are proportional. But the experimentation never stops. Eager to squeeze in a few more calories with every feeding, we've added coconut oil, butter, heavier formula, and myriad combinations in between. Our kitchen sometimes resembles a mad scientist's lab, with carefully calibrated concoctions prepared with blenders, heated, then cooled oil and syringes. This week, we're beginning to try to wean her onto Pediasure, a calorie-rich milk substitute that tastes a lot like rich, chocolatey Ovaltine.

Often, the experimentation works. Others, no. The frustration comes with the vicissitudes. For weeks, Hope will eat like a linebacker, devouring bottles and fruit with frightening relish. Then there are stretches like last week: Little interest. frequent spitups and tiny triumphs if she finishes half a bottle.

Few variables change to explain why she's just not digging her chow. So we fret and obsess. Is she constipated? Did we feed her too much chicken? Is she dehydrated? How much did that diaper weigh? Should we cut back on the oil, sacrificing a few calories in the hopes that she might make up for it by drinking more formula?

There may not be an easy answer. It's a common issue for those with CdLS. The metabolisms are lightning quick. The appetites come and go. The digestive systems are problematic.

Dr. Spitenup encourages the long view: Slow and steady gains, without getting caught up the daily fluctuations. But that's often easier said than done. So we ponder, second-guess and hope for the best.

Meanwhile, we're happily watching her blossom as a boom, boom, lickety-split player. We finally were able to capture the elusive prey at play on the exersaucer. Usually, she freezes the moment a camera emerges, but we got lucky.

Saturday, November 15, 2008

New tricks

It's 10 a.m. on Sunday, and these are the moments that make me smile. Hope is in a strange contraption known as an exersaucer. It's a big gizmo toy companies created after parents sued the bejesus out of them for baby walkers: Round, orange and plastic, it has a seat in the middle and allows Hope to spin around 360 degrees and monkey with about 10 gadgets.

And does she ever. Round and round, laughing and giggling, Hope twirls from one station to the next.

First it's the big apple on a stick thing. Thwack, thwack, thwack. What could be better? It sways. It's red! Oh life is a joy!

Ten seconds later: Hey, what is this? Big plastic bones that make woof, woof sounds and spin? Twirl, twirl, twirl. Life couldn't possibly get any better, until ...

Be still my heart! It's a green car that goes beep, beep! Tee hee, hee!

And on it goes for about 30 minutes. Hope forgets that we exist. Few are so serious about play. She breathes heavy. She shakes her head. She stares intently at a blue walkie-talkie thing. It has buttons! Wow!

We've tried to capture the frenzy on film, but Hope is an elusive prey. As soon as the camera is produced, the wonder of the exersaucer ceases. She becomes transfixed and stares intently at the camera.

Perhaps we'll have do go the 20/20 hidden camera route and catch her in the act like the butcher flicking cigarette butts onto a flank steak.

It's a sight to behold. Not the butcher. That's gross.

Hope is doing some great stuff for a nearly-9 pounder. She's getting closer by the day to sitting on her own. Yesterday, she made it for 30 seconds before tipping over. This morning, she began banging her binkie on the table like Krushchev at the United Nations.

She has a new stunt that involves vigorously shaking her head, as though she was asked if the Detroit Lions would ever win a football game.

Here's a peek into her evolving repertoire.

Sunday, November 9, 2008

Two Scorpios

The bad news: I live in a house with two Scorpios. The good news: Lulu is a Leo.

Big Mo turned the Big 33 today. Good times abounded: Massage (pros, not my rub-a-dub-dub, you're done); religion; culture at the Detroit Institute of Arts; good food; good sweets and, soon enough, neck-twisting and booty-shaking at 50-and-still-kinda-sorta-kicking-it Madonna.

I've gushed enough about Big Mo, but a little more couldn't hurt. I'm one lucky doobie. Look at her. Look at me. She makes me laugh, she tolerates most of my poop jokes and has the world's biggest, toughtest heart ... even if she does insist on dressing our daughter in Halloween gear six months a year.

Who loves ya, baby?

One year

I've been thinking a lot lately about Hope's first year. I wish I had some new conclusions. I've been reluctant to try to write any of them, though, because they're about as illuminating as a Successories poster.

In my heart, this year has been incredibly profound, moving and personal. Trying to capture those feelings in words, though, ends up sounding like a Peace Corps slogan (Parenting: The Toughest Job You'll Ever Love); commercial for a clog remover (Plumbing the Depths of Infinite Love); or a blurb for a Lifetime move (A Forbidden Love, An Unspeakable Crime).

OK, I made that last one up. But it sounds cheesy enough.

The point is, it ain't easy. I guess this is the sort of stuff that keeps poets in business, if anything could. So here goes.

It's been a great year. It's been challenging, rewarding and transcendent. I look back, and I'm not sure I ever recognize that guy from a year ago (but he sure is handsome.) As much as I accept Hope's condition, I've come to realize it's not an instant process. It's still difficult. There's still residual tears of frustration, anger, questions I'm afraid to pose and moments of self-pity.

But above all, there's great love. I'm still humbled that I get to see that little girl every morning, hear her cry, make her smile and pat talc on her bummity-bum. I'm proud she's doing as much as she is. I'm wowed that spending hours knocking down blocks can be so rewarding. If the world has ever built a better tonic that her little smile, I haven't seen it.

Maybe it's that simple: She's got my heart. If she's happy, I'm happy. I guess that is love.

Wednesday, November 5, 2008


Ahh, the perils of blogging. Every once in a great while, between the pablum, the idiocy and forced "ain't I so cute" jokes, you strike gold with something like "The Night the Dog Ate the Hearing Aid."

Not long after the exceedingly rare moments when the heavens align and pour forth USDA AAA Comedy Sirloin, a few hours of smug satisfaction quickly give way to the terror of the next act. Like astronauts returning from the moon, you know you'll never again reach those heights.

So terror gives way to depression, futility and procrastination -- which is one hell of a way to say I have writers' block. Between preparations for Hopes first birthday, trick or treating and the madcap Midwestern urge to decorate every square inch of the house in autumnal bunting, I've run out of anything interesting to say.

That's not to say things are quiet. Hope dazzled as a turkey for Halloween and bumble bee for her first birthday party, which followed two days later.

Somehow, we survived both the party and the preparations. I realized I had crossed a symbolic, never-to-turn-back threshold while discussing the shindig with Mo. I suggested beer, costumes and a great big submarine sandwich that we could eat with French Onion dip.

Her counter: Halloween-themed cookies, finger foods, something called Vampire Punch, phony eyeball meatballs, pass-the-pumpkin children's games and, by the way, you are a knucklehead.

Three guesses who won.

Friday, October 31, 2008

Birthday girl

Hope turns one today. Hooray and huzzah! I'm speechless. We did it.

Monday, October 27, 2008

Hot stuff

Just shy of Birthday Numero Uno, our baby seems more like a little girl each day. After months of hesitancy, she's become a vigorous -- outta my way, sucka -- player.

She knocks over toys. She waves her arms like there's no tomorrow. She sits in her chair, sizing up pink robot dog from the Happy Meal and other toys with a seriousness unseen this side of the War College. She does odd little dances. Meals resemble monkey lunches at the zoo: Lots of banging and demands for more.

It's nice to see. Sniff sniff. Our little baby is growing up.

Monday, October 20, 2008

Hitting the marks

For about six months, its main purpose was to collect grease spots and hog magnets.

Tonight, I made it official, crumpling up the development milestone chart that has stubbornly hung on the refrigerator since Hope's birth, becoming more irrelevant each month.

Several months ago, it would have been a sad moment. But this was more like emptying the dishwasher: A slightly onerous chore that seems worse the longer you put it off.

As spring faded to summer and fall, we've realized that Hope's course is so unique that it's pointless to plot it on conventional charts. When she was about four months, we kept score like a 4-Her at the county fair. Check, check, check. She's hitting her marks.

At six months, we rationalized. Well, she's not making vowel-consonant combinations, but that wheeze kinda sounds like an "Ah Goo." Good enough!

At nine months, we gave up. A few weeks shy of her first birthday, Hope will do well to hit 9 pounds by November, remains toothless and is still chugga-chugga-chugga close, but not quite sitting on her own.

We think her motor and social skills are about the same as a 5 or 6-month-old, for those keeping score at home.

It's liberating to say we're not, as much as we can avoid it.

The trick is striking that balance between acknowledging that Hope is on her own curve and still working to maximize her potential. I've worried sometimes that acceptance could lead to complacence.

That seems unlikely with a taskmaster like Mo. She still works Hope like that angry guy from Celebrity Fit Club. Our house is being overtaken like kudzu with motor skills-building toys and apparatus. Every night, we wave like giddy beauty queens to encourage Hope to wave back.

One day, we know she will. Until then, we'll forgo the scorecard.

Wednesday, October 15, 2008

Sunday, October 12, 2008

Bad dog

Did you hear the one about the dog who thought she needed hearing aids?

No joke. Continuing this month's theme of animal-induced melodrama, the scene was thus: Mo is downstairs; Hope is dozing contentedly, dreaming of ceiling fans; I am reading with the dog at my feet. It's an achingly stereotypical portrait of suburban idyll.

And then: Crunch, goes the dog. Huh? goes the oblivious owner. Crunch goes the dog again.

By the time I look down, the damage is done. Lulu is nibbling on one of the Oticon Vigo BTEs, the sleek, pretty-in-pink hearing aid that we spent the summer battling bureaucrats to acquire. We had them precisely one month.

We were mortified. The aids go in a hard plastic carrying case. They were left somewhere Lulu could find them, which as a friend says, is planet Earth. We were especially embarrassed because we felt like irresponsible ninnies who need to learn everything the hard way.

It went down something like this.

Fortunately, insurance is picking up the cost, and no animals were hurt in the reenactment.

We adopted Lulu as a puppy two years ago this week after listening to "Marley and Me," a tale of another bad dog who's hard not to love. Since that time, Lulu has destroyed our yard, eaten roughly 130 pairs of socks and underwear and ruined our carpet.

But she's tough to stay mad at for very long. Everyone has their thing. Lulu's is eating stuff.

On another level, we think Lulu has prepared us for raising a special-needs daughter, imbuing us with forgiveness, understanding and patience that we were sorely lacking a few years ago. Or maybe that's just a hifalutin way to say we're too lazy for more dog training.

Thursday, October 9, 2008

Another pointless video

This is how things work 'round here. I waste two hours making a video. Mo takes one look at it and pronounces it "pointless" and "schmaltzy." I sulk for three days, mostly because I know she's right.

After day four, I surrender and post it anyway, figuring "pointless is better than nothing."

Things have quieted somewhat after the confusion over the fundoplication. We've concluded that our best option now is to wait, monitor and see what surprise wily ol' Dr. Spitenup has in store for us next.

In the meantime, Hope's been grouchy. She hasn't smiled much this week. When she has, the recipient has been stuff like the back of books and armchairs. Us? Pfft. Yesterday's news. But mattress covers? Now, those are Grade A comedy.

We take it in stride for about two days. On Day Two, we rationalize: Well, she was really happy last week, so she's due. On Day Four, we search for meaning. A few nights ago, in the groggy television wasteland after a 3 a.m. feed, Mo watched a special on autism. It wasn't quite what the doctor ordered, especially the part about smiling more for objects than people.

For the next few days, it's difficult not to see signs everywhere. Autism is a real possibility with CdLS. Like a lot of scary eventualities, it's not something we need to concern ourselves with now. But it's still hard not to wonder and worry.

Until then, into Day Seven of the smile slowdown, we wait for the breakthrough we know is coming.

Friday, October 3, 2008

Keep on truckin'

Ooops, he did it again. Continuing a pattern of puzzlement befitting the Sphinx, Dr. Spitenup threw us a whopper yesterday: Not only isn't he recommending surgery, but everything is mostly hunky-dory.

Six weeks after first broaching the topic of a feeding tube, and perhaps fundoplication, Spitenup now says we should keep up our efforts to increase Hope's caloric intake but otherwise keep on trucking. Her weight, about 8 1/2 pounds, at 11 months is on the same slow growth curve she's followed since birth, according to Spitenup.

We have a lot of fun poking fun at Spitenup. He's a crazy, bedeviling fellow. But we also believe he hasn't done us wrong so far. For all our frustrations, the pediatrician who prefers metaphors involving prostitutes is actually pretty good.

Spitenup is clearly biased against fundoplications, a surgery that involves wrapping part of the stomach around the esophagus to limit reflux. He claims they cause as many problems as they solve, including bloat, inability to burp and retching. Spitenup instead prefers slowly boosting caloric intakes, waiting and monitoring. As a rule, he's against the surgery until kids are at least 18 months.

So we're stumped. Our inclination is to wait for another six weeks, and then perhaps seek a second opinion. After plateauing for a month, we do think Hope is again gaining weight.

But we're throwing it out there for the CdLS parents who follow the blog: What are the benefits, drawbacks of fundoplications and G-Tubes? Good, bad, indifferent, amusing stories, we welcome your input.

And thanks.

Thursday, October 2, 2008

Decision day

Today is D-Day with Dr. Spitenup, when we throw ourselves at his quirky mercy and see if Hope needs surgery to perform a fundoplication and install a feeding tube.

We pushed up an appointment set for late October when Hope added a new trick to her repertoire: Projectile vomiting. It's eased, but there was a week or so when she'd make like "The Exorcist" twice daily.

Eleven months into being parents of a special need child, we've had to re-learn worry. It's a tricky balancing act. We can't rush to the hospital every time she thew up old blood. But we shouldn't get used to it, either.

A fundoplication, which wraps part of the stomach around the esophagus, could help with her reflux. A feeding tube would allow us to continually pump calories when she sleeps to fatten her up.

When Spitenup broached the fundoplication and feeding tube a month ago, we were nervous and scared.
We've since slowly warmed to the idea and, after a summer of Hope spitting up blood and negligible weight gain, we've concluded it may even be overdue.

Ideally, we'd like to coordinate surgeries with our ear-nose-and throat dude, Dr. Frosty. He wants to trim part of her windpipe -- the larynx -- to fix her heavy breathing. He thinks part of her problem with weight gain is because she burns too many calories breathing.

But we shall see. Spitenup has a way of confounding us.

Sunday, September 28, 2008

Requiem for a kitty

Happy anniversary. The cat is dead.

It's a lousy Hallmark greeting and -- if you're inclined to find omens in bowls of soup like we are -- it's a tough one to spin.

We marked five years of love, grit and unity Saturday. We ate a fancy meal, dressed to the nines and shared our goals. Finding a dead cat sprawled in the kitchen wasn't one of them.

Mo screamed moments after opening the door.

"Oh my God! Jack is dead!"

We have two cats: Jack and Fig. They look like twin tabbies, but are so temperamentally opposite they seem like stereotypes. Jack is an 10-year-old barn cat who hates everything in the world except Mo. Fig is a 7-year-old fraidy cat, fat, sweet and so dumb that, twice a day, he forgets where he is and weeps existential tears for his mother.

Lately, Jack has been sick. A month ago, he peed blood. Days ago, he peed twice on a couch, prompting an enlightening discussion about the limits of animal charity. It ended poorly, not long after I proposed a two-step solution: (a) Nobody like Jack so (b) We should put him to sleep.

My first thought: Denial. My next thought: I killed Jack.

Huh? He's napping, not dead. See? Uh oh. He's dead. Mo will never forgive me.Of all the crap out of my mouth, God, why listen to that? Why? Poor, Jack. Poor, Mo. Poor, me. I'm in big trouble.

Mo was in the living room, crying. Jack walked up from the basement and meowed.

"That's not, Jack," I said. "Oh my God, it's Fig."

My first thought: Relief. I didn't kill Jack. My next thought: My God, it's Fig.

Four hours ago, Fig was purring happily and actually upstairs during daylight hours. I was glad for him as I put on my suit, thinking: "After 7 years, Fig is finally coming out of his shell. Good for him."

I dug a deep hole in the backyard and learned where the gas line is buried. Thinking it was a root, I whacked it for 5 minutes with a shovel. Fortunately, they are sturdy: Our anniversary celebration did not move from dinner to dead cat to explosion.

We had a quick service, burying Fig with an angel wing costume we made him wear for Christmas cards that did a better job embarrassing us than him. We told him we loved him, apologized for not taking better care of him and sprinkled tuna juice on his grave to send him on his way.

It must have been shock. Everything happened so quickly -- one minute, wine and romance, the next figuring out what to do with a dead cat at midnight -- that the loss didn't really hit until Sunday.

That's when I found myself poring over Internet forums, reading about sudden death in cats (apparently it's common) and bawling like a little girl who missed out on Hanna Montana tickets. Even then, I thought: "What am I doing? Why am I crying over Fig?"

Mo put it best: Fig was a family member, the first we brought home together as a couple. He died alone. We didn't see it coming and we couldn't say goodbye.

We'll miss seeing him in the window when we pull into the driveway, emerging from his hiding spot under Hope's crib to nuzzle our legs during midnight feedings and wailing plaintively from the basement at nothing in particular.

He was a good cat and we loved him. Our crowded house seems emptier without him.

Friday, September 26, 2008

Postcard from Higgins Lake

Fun times at the Mo's family compound in northern Michigan this week: Great weather, cool water and sparkling sand.

Higgins Lake is special to us. Mo's family has been going up there for years. Every year, we swim, eat far too much dip and engage in fierce tennis tournaments that usually end with a few choice words and thrown rackets.

This was Hope's first visit and our first since last September, when Mo was in the seventh month of a stressful pregnancy. Last year was reflective: We knew we were on the verge of a great journey, one that would forever change our lives. We were worried, but optimistic.

A year later, we walked the same beaches and trails and felt satisfied. Life didn't turn out exactly as we planned -- when does it ever? -- but our baby was happy and got to be part of an important tradition. We couldn't ask for a whole lot more.

Saturday, September 20, 2008


Hooray for Saturdays! We're off for a much-needed, long weekend at Michigan's working-man's Riviera, Higgins Lake. We're stuffing Hope, her gear, the dog into a car and hoping like hell there's enough room. If not, Lulu will have to suck it in.

Monday, September 15, 2008

Best for Hope

From the Department of "Damn Irony, How Could You Be So Fickle": Two people who've never been known to pass up a brownie are raising a girl who can't put on weight no matter how hard we try.

It'd be funny if it weren't so worrisome.

Over the past few months, Hope has fallen off her own slow-but-sure growth curve of about 2 ounces a week or 1 pound every two months. It wasn't ideal, but it remained consistent since she was in utero, allaying concerns with the knowledge that she's humming along at her own slow course.

But Hope has remained at 8 pounds, 4 ounces for three weeks and gained 1 pound in about 3 months. We stuff her with prunes, oatmeal, sweet potatoes, carrots, boring stories and silly songs. We re-institute the 4 a.m. feeding we were so relieved to forfeit.

Zippo. No matter what we do, the scale doesn't move.

We're rapidly approaching the point where intervention may be necessary. Dr. Spitenup, who is as conservative as they come, first floated the idea of a fundoplication and G-tube surgery about two weeks ago.

The procedure would close off the upper part of the stomach to thwart acids from coming back up and install a feeding tube into her stomach to allow us to continually pump her with calories while she's sleeping.

We can't say we were surprised. But we were saddened. Feeding tubes are fairly common among those with CdLS, and Hope's lack of one was a point of pride that we perhaps naively interpreted as a good sign.

But after a while, you realize your pride isn't doing her any favors. Her inability to pack on pounds no doubt further hinders her development. She still hasn't sat up, perhaps because she's not large enough. The more we feed her, the more she vomits -- helping no one except our disgusting dog, Lulu, who ranks vomit as No. 3 on her favorite foods behind soiled diapers and dirty socks.

So we've come to accept that a feeding tube not only is a good idea, but we need to start moving on it quickly for Hope's sake. It would supplement -- but not replace -- normal feeds, and countless CdlS kids have thrived with them.

When Hope was born, her Grandma Clem said we'd have to throw away our expectations. She was right, but so much of this year has also been about learning to move behind our pride to do what's best for Hope.

Thursday, September 11, 2008

Vision in pink

As promised, here's Hopes fancy new hearing aids, the Oticon Vigo BTE. They're sleek, they're pink and they help her hear. We couldn't ask for much more.

She was fitted for molds this week, the tailor-made rubbery things that form to her ears. They should come in a few weeks. Until then, we have standard molds, which are pretty good, but sometimes emit static because they're not a perfect fit.

We haven't tested her hearing in months, but suspect it's improving. The last time we did, she had a mild-moderate conductive hearing loss. That means that her inner-ear is fundamentally sound, but something is blocking sound from getting to it -- most likely her tiny ear canals. That's fairly common among CdLS kids. Many outgrow it. Our fingers are crossed that Hope will as well.

I'm home with Hopesy today, doing the Mr. Mom thing for the second Thursday in three weeks while Mo works. I dig it. It's a nice change of pace: hanging out, going for walks, playing with my girl while Mo makes the moolah. I could get used to this.

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Monday, September 8, 2008

Happy face

This one's for you, Big Mo: Today's entry is all smiling toads, pots o' gold and bales of cotton candy. So stereotypically Irish it's politically incorrect, Mo would rather eat her own eyeballs than think someone was feeling sorry for her.

She gets peeved when I include too many details about bad days on the blog, preferring instead I skim over the ugly parts and accentuate the positive.

So here goes: We won our battle with supplemental insurance and got sleek, small and lighter hearing aids for Hopesy. And they're pink! Photos to come. Hope resumed occupational therapy on Monday. It's not as many hours as we 'd like -- or think she deserves --but Michigan is budget-cut crazy, so we're grateful for her two hours a week of therapy.

She remains the undisputed, No. 1 Cutie.

Sunday, September 7, 2008

Retroactive ugh

It's Sunday morning. The coffee is strong. Mo's at church, getting religion. And enough days have passed to put the ordeal of Tuesday's endoscopy in perspective.

I wrote a scathing, gut-wrenching, "Avast ye! Accursed world!" entry on Wednesday morning, after Hope was up all night vomiting and wailing. Like shopping hungry, blogging angry probably is not the best idea.

The endoscopy, as we feared, was no fun. We highly recommend other pursuits of leisure.

The procedure involved sedating her and worming a small camera down her throat to peek at her stomach and provide clues for her occasional bleeding. That took about 20 minutes, but we were in the hospital for about six hours dealing with one indignity after another.

Two veins were blown in her head trying to get an IV for sedation. Finally, one was put through her groin, which is every bit as nasty as it sounds. She briefly stopped breathing while under. Nurses "bagged" her, or pumped air into her lungs. A gung-ho physician even tried to intubate her, working another tube down her throat in a fruitless attempt to supply a steady stream of oxygen into her lungs.

The results from Dr. Spitenup: Pretty much what we thought. One fold of her stomach is irritated from a hiatal hernia, the rubbing of the stomach and the esophagus. That's likely the source of the old blood that Hope was vomiting about once a week earlier this summer. Spitenup says the irritation shouldn't hurt her. We're not so sure.

There's little recourse beyond surgery to fix the hernia. The problem isn't bad enough yet, though, so we're forced to grin and bear it.

Initially, we were annoyed and anguished. Hope was put through the ringer to confirm what was suspected, but fix nothing. We kicked ourselves as bad advocates for her care, second-guessing the decision to go through with the endoscopy.

After a few days, we're more even-keeled. Hope has rebounded well from the procedure, which we acknowledge is necessary to confirm the problem before intervention.

And as always, we're still conflicted about Spitenup. We're sore he surprised us with his decision to go ahead with the endoscopy over a holiday weekend after indicating it may not be necessary. His bedside manner alternates between non-existent and strange (After the procedure, he approached us in the waiting area, motioned us inside and offered a barely audible grunt.)

No doubt, Spitenup is a stinker. But he's also been right about everything so far.

And we know our angst at him is window-dressing. The real source of frustration, such as it is, is seeing something hurt your baby and not being able to fix it.