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.

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.

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.

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.

Ho Ho Ho, HMO

We were about 10 minutes into "Sicko," when we realized the indictment about the health insurance industry may not be the best choice for Saturday night diversions.

Scene One: A guy losing two fingers and being told by insurance to pick which one he wanted.

"Uhhh ... you sure you want to watch this, Mo?"

Scene Two: A couple losing their house because of medical bills.

"Maybe we should just play Scrabble?"

Scene Three: An insurance executive telling Congress her job is to deny 15-25 percent of claims, regardless of merit.

"Alright! Turn it off already," Mo relented.

Like it or not, we're now at the mercy of insurance companies. It's something we'd rather not think about much. We know some daunting bills may be in our future. We're looking at co-pays of about $150 a month alone for specialists to maintain the status quo.

But mark today on your calenders: Thank God for soulless HMOs!

We're happy to report that Hope is approved for five Synagis shots. That's the hardcore monthly dose that costs $1,000 a pop and wards off colds and flu strains for preemies or newborns at risk for respiratory problems. We heard it could be a hassle and insurance companies were often reluctant to pay, but it was easy-squeasy and she'll receive the shots until the cold season ends in April.

That may be because we found a good pediatrician. Our man Muller called the insurance stiffs, lobbied the case and seems to be reliable about returning phone calls, writing referrals and being uber-thorough with Hope. We were sweating it for a while and had scheduled fall-back appointments with other pediatricians, fully expecting that finding someone we liked would be a struggle.

We're also grateful that he agreed to ease Hope's wait to see a gastrointestinal specialist by writing a prescription for infant Prevacid. The drug -- which is a lot like Zantac (not to be confused with Xanax) -- should help with her reflux. It's grown worse lately. Sometimes, she spits up food through her nose immediately after feeds. Others, she waits until it's a fully digested, chalky protein and lets it loose two hours later through her nose.

She's right on schedule. We've learned that reflux -- or Gastrointestinal Reflux Disease -- tends to worsen about 1 month after birth because infants' stomachs began producing more acids.

We have only moderate expectations for the Zantac. If nothing else, it should ease some of Hope's discomfort. But it's exactly what we wanted to try and we're grateful the doctors thus far have been so cooperative.

So who's with us? Three cheers for corporate muckety mucks making decisions about our health through spreadsheets in glass towers! Hip hip, hooray.... Hip, hip, hooray ... Hip, hip ... Aww, the heck with it.

Bushed

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We bought a garage door the other day. Once adorned with retro eagles that Mo insisted I remove when we moved in, it broke every three months. My parents taught me how to deal with these problems: Ignore them until you can't possibly anymore, then apply the cheapest fix and forget it until it breaks again.

After years of adhering to the tradition of turning small problems into expensive ones, we followed the door's lead and broke down. Returning home from work, I was eager to see it.

I made it about three steps into the garage when Mo yelled at me through the side door.

"What are you doing?" she barked. "Get in here! I need a break."

That's life now. Five minutes looking at a door is wasted time. I'm typing with two fingers and trying to coax Hope back asleep. Mo is napping. She's making up for last night Afflicted with what my father-in-law delicately calls "the creeping cruds," I decided I couldn't help with Hope's feeds and needed a bubble-bath and nine hours' sleep to slay whatever ailed me.

Call it what you like. I consider it a valiant sacrifice to shield my daughter from germs that had nothing to do with eating six slices of pizza in 10 minutes.

Like all new parents, we knew this would be exhausting but weren't prepared for how much. From afar, it shouldn't seem so hard: You burp, feed, fuss, coo; change a few diapers, apply some creams now and again and -- voila! -- wile away the next three hours completing jigsaw puzzles or online enrichment courses.

Of course, it's all-consuming and unrelenting. I'm bushed. Mo's bushed. We're learning that raising a child with unique challenges is probably like raising a healthy one but magnified. It starts with the doctors: In addition to a pediatrician, Hope sees a cardiologist, audiologist, geneticist and physical therapist. And the spit-ups and rashes that would normally be scary are petrifying. Mo is now navigating the maze of health care and HMOs. We'd like to add a gastrointestinal specialist to the list to evaluate Hope and address her spit-ups. It's supposed to be standard for CdLS kids. Our network has pediatric GI docs. The next opening is May.

But big deal. It's work. What great in life isn't? And Hope's doing good, home now for three weeks and notching small landmarks. We don't panic anymore when we don't hear her for 3 minutes. She's becoming more emotive every day, sticking out her tongue, fixing her stares and flashing dimples like she was at the county fair. We're not counting her breaths anymore. But we are counting our blessings.