Saturday, May 31, 2008

Mystery solved?

We like to think we're clever people. I almost solved a Suduko once. Mo kicks some serious patootey at Scrabble. We're both self-aware enough to know that few things can make you feel so dumb, so fast as child-rearing.

We've been in fits over Hope's mystery ailment. She has a bad cough. She's running a low-grade fever. Her diaper rash looks like the surface of Mars. She drools like Marmaduke eying the mailman.

Last week, we took Hope to the pediatrician. The diagnosis: Who knows? Maybe she has an ear infection. The treatment: 10 days of bubble-gum flavored antibiotics.

The drool, two-pack-a-day cough, diaper rash and boogies persisted.

Next came Internet research. Is it allergies? Do we need to find a good home for Lulu or -- horrors -- actually start cleaning the house?

We were onto the rock 'n' roll pneumonia and the croup before Mo put it all together.

Bad rashes. Coughing. Drooling. Irritability. Mo stuck her hand in Hope's mouth.

Son of a gun, we think our girl is teething.

One of the dangers, I think, of having a child with a fairly exotic genetic condition is that sometimes we skip over the simple causes for her discomfort.

But it's sometimes complicated stuff: We got the tests back from Hope's endoscopy a few weeks back to measure her reflux and determine why she spat up blood. Once again, the inscrutable Dr. Spitenup threw us for a loop. The results showed mild inflammation of the area near where the stomach and esophagus meet.

Translation: A bit abnormal but not the horror show we expected. So, once again, we've dodged our worst fears. And for that, we're happy.

Monday, May 26, 2008

Go baby

video

We could write about Hope's first boat ride yesterday. We could go the health-update route: Nasty cough, possible ear infection, start of antibiotics. We could posit about the promise of spring and yearnings for higher truths.


But it's a long weekend, everyone is half-asleep and the pontification well is dry. Here's a video instead. She's doing some cool stuff with rings. Her therapist says she's one of the most focused players she's seen. We could take that a lot of ways. We'll go with the good one.


Thursday, May 22, 2008

Whirlwind



Phew. It's been one of those weeks where breathing is a luxury: Hearing aids, a baby blessing ceremony/open house and endoscopy all in the span of four days. At this rate, we're planning to take up stem cell research as a hobby over the long holiday weekend.

Hopesy has emerged from the hubbub like a champ. She was feeling so miserable last week we almost canceled a blessing ceremony we planned at our house on Sunday. We postponed her hearing aids and were about 5 minutes of continuous screams away from taking her to the hospital on Friday, when Dr. Spitenup had a suggestion: Mylanta. Cherry Flavor if possible.

Eureka. It was a magic mood changer.

Despite our worries, she was a doll as dozens of people pawed over her for five hours Sunday. Kids ran buck wild. Our house is too small. We spent far too long cleaning and cooking. And it was easily one of our favorite parties ever. If it could have gone better, we're not sure how.

Tuesday, she got her temporary hearing aids. They're a bit big, but Hope doesn't seem to mind them at all once they're in. We worried about behavior issues and were warned to ease them in gradually, beginning at 10-minute intervals. But she acts like she's been wearing them for years.

We capped the excitement Wednesday with an endoscopy, a surgical procedure that snakes a tube down her throat to try to find what made her so fussy last week. We thought it was reflux. Spitenup, true to form, isn't so sure. The scope didn't find major damage that would indicate a bigger problem.

We're not sure where that leaves us -- or what to make of how much Hope enjoyed sedation. As the drugs kicked in, it was as though all her old favorites -- Dice-K dolls, ceiling fans, balloons -- were tickling her toes. She smiled. She laughed at nothing in particular. She dug the world, then she dug sleep.

And we dig her. It's been one of those weeks of extreme emotion -- up, down, anxiety, fear, frustration and elation -- that, when we finally get a spare second, make us realize that we're very lucky and proud.


Wednesday, May 14, 2008

Mojo interrupted

We should have seen this coming from Mars. We broke every difficultly learned lesson. We messed with mojo, scorned superstition and jinxed our juju.

Never, never, never tempt the Fates so brazenly as to post a video online to the tune of "Happy Baby."

Since it's been up, she's been anything but. Like a moldie oldie, all her Greatest Hits are back: Inconsolable tears, fussiness, whining and reflux.

For the first day or so, we thought it was cyclic. Then, we worried about a cold or allergies. When she spat up what appeared to be old blood yesterday, we knew it was time to call upon our old friend, the gastroenterologist, Dr. Spitenup.

He shined a special light today on the evidence -- a dirty bib -- and confirmed our fears. It's blood. She's not just depressed about the cancellation of "Gilmore Girls." There's a serious rum-tum-tum in her tummy and throat. So it's time to take a look and get serious, once again, about her nemesis, reflux.

She's scheduled for an out-patient endoscopy next Wednesday at our home away from home, the Pediatric Intensive Care Unit at Beaumont Hospital. She will be sedated. Spitenup will snake a scope down her scope and assess damage to her esophagus. If it's isolated, we'll likely stay the course of twice-daily treatments of Prevacid. If it's not, we'll have to get more aggressive and perhaps try more medicine.

Quick lesson about reflux: It's the bane of kids with CdLS. The stomach shoots liquid up the throat. Sometimes, it is spat out the nose or mouth. More often. it is swallowed. It's heartburn and majorly annoying. Aside from surgery, it isn't solved but managed with medicines like Prevacid that neutralize acids and prevent corrosion of the esophagus and mouth.

We have come to respect Spitenup and his mysterious ways, but his conservative, stay-the-course approach sometimes rankles. We're bummed to return to the hospital -- even for just an afternoon -- for the third time in as many months. We're sadder still that the baby who was so happy a week ago is so miserable. But we're glad that Spitenup finally seems to be taking us seriously. For too long, we've stuck with wait-and-see. It's time to act.

And this time, we've absolutely, positively, cross-our-heart, rub-a-rabbits-foot, find-a-four-leaf-clover learned our lesson. No more sweeping declarations announcing the glorious state of Hope to the world.

From now on, it's strictly facts ... unless of course, the reverse-reverse-mojo rules apply and the mere act of stating that she's miserable leads to a dramatic turn in her temperament.

Friday, May 9, 2008

Six months

video

Somehow, this week, amid my tirade against insurance, I neglected a key piece of news: Hopesy is six months old.

In some ways, it seems like it's gong by quickly. In others, not so much. But our days are significantly richer and more joyous because she's part of them. Hope is doing good things: Grabbing items with both hands, becoming more vigorous about wanting objects (and upset when they're taken away), rolling from her back to stomach, gaining trunk control, eating like a champ and pip-pip-pipping away.

Hope cracked the 7 lb. barrier a few days after her six-month birthday, following the same slow, steady 2 oz. per week weight gain she began in utero. At this rate, she'll be 10 pounds in a year, which puts her smack in the middle of the CdLS growth chart.

The happy, happy Hopey we know and love has returned after a sour turn following the ear-tube surgery. So life is good.

Wednesday, May 7, 2008

Bumper sticker politics




We've tried to treat the blog like a dinner party with your mother's friends: Keep it chipper, chatty and avoid talk about God or politics.

But we're unwillingly becoming a bumper sticker for healthcare reform.

The bureaucrats drove steel-nerved Mo near tears yesterday. We've spent the last few months waiting for our geneticist to forward his mammoth report documenting every stray hair and malformed bone to the state. We need it to qualify for supplemental insurance that picks up items our regular policy does not, such as hearing aids.

It's not exactly a bargain: $2,400 a year. If the cost doesn't give pause, the paperwork does.

The geneticist gave them about 50 mind-numbing pages. They want more. It's not enough to be diagnosed with Cornelia de Lange Syndrome, with all its attentive problems. They need documentation from four specialists listing why Hope should get something that's outrageously expensive and we hope to hardly use.

So it's another week of faxes and phone calls for Mo to prove that CdLS presents a host of issues, even though a Google search of the syndrome would reveal the answer in about 0.62 seconds.

That's annoying. What's more so is that we could have saved months of hassle if someone told us months ago. When Hope flunked her hearing test in the hospital, we received three phone calls from government social workers within hours. When she was diagnosed with CdLS, no one did, leaving Mo to navigate a dizzying bureaucracy on her own.


She's done a good job, but sometimes spends entire afternoons on the phone doing battle with receptionists.

The good news: CdLS kids at least qualify for supplemental insurance. Kids with Down's and some other syndromes don't, no matter how severe they are. So go the vagaries of health care.

Better news: We only need to do this once. Once Hope's in, she's in for good.

But oh what a hassle to get there.

Thursday, May 1, 2008

No better news


Sometimes, good news comes when you need it most.

The breast-beatings, lamentations and general malaise lasted longer than we expected after last week's ear-tube tumult. We both wish it went better and beat ourselves up for pinning so much on what we should have known was a long-shot.

And it's been one of those weeks with Hope. My worry about disrupting the status quo with surgery proved prescient. The huge smiles, full-body giggles and "Oooh Daddy! You are so Funny" chortles are mostly gone. In their place are much fussiness, tears and apathy about Mom and Dad.

So, as usual, we felt physically ill sitting in the waiting room today for Hope's cardiology appointment. Heart defects are the main reason some CdLS kids don't reach adolescence.

It was a three-month follow-up to check on Hope's left ventricle, the main pumping chamber of the four that comprise the heart. It's a bit big. That's not good.

The fear is that generally chambers are big for a reason: Something is making it work too hard. We worried it is a manageable, but incurable, condition known as cardiomyopathy, which is quite bad.

It turns out that, like a lot with Hope, she may just be doing her own thing.

Her ventricle is a bit bigger than it was three months ago, but proportionately so to the rest of her heart. Blood is flowing fine. Her numbers are great. The heart is beating up a storm. Everything is doing what it should.

"I couldn't deliver any better news today," Hope's cardiologist told us. "If we haven't been tracking her since birth, we probably wouldn't have ever known there was an issue."

We'll see the cardiologist again in six months. After that, maybe once a year or maybe never.

Wow.

Now is normally the time I would pontificate: Let this be a lesson in the vagaries of life, I might say, or Sometimes, your worst fears become pussycats when you stare them in the eye. But I've learned the hard way not to tempt fate by getting too ahead of myself.

So I leave it at wow.

Wow.