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

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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.


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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

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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

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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.