Fundraising, surgery and a helmet

A gigantic thank you to friends and family near and far for another successful Walk for Will and Hope. This year, we drew about 75-80 walkers for a picture-perfect 2-mile stroll. The weather was unseasonably warm. The leaves were magnificent. The company was terrific. Hope and Oscar were in fine spirits. We really couldn't have asked for much more.

We're happy to report we raised another $4,500 for the Cornelia de Lange Syndrome Foundation, pushing our two-year total past $10,000. It means so much to us that we could do this to honor Hope and Will, who would have turned 6 five days after the walk. It's hard to believe it's been that long. We miss you, pal.

It's also hard to believe it's been 18 days since the walk. A whole lot has happened since then. About five days after the walk -- two days after we put my parents on a plane -- Hope had her supraglottoplasty surgery. That's the surgery to correct her laryngomalacia, a floppiness of her airway that made her seem like she was wheezing or snoring when she breathed.

Laryngomalacia is fairly common and benign among newborns. Most outgrow it in about 12-24 months. But most aren't nearly 3 and still about 16 pounds. We worried Hope's breathing was compromised by the floppiness of her airway and that she had a tougher time getting over colds because of it.

The surgery involved cutting floppy skin from her windpipe that caused the wheezing. It required anesthesia and putting an oxygen tube down her throat during the procedure. So naturally, we were freaked out. We were doubly freaked when we decided on the eve of surgery to read medical studies about what could go wrong. Never a great idea.

Hope was a champ. She left the hospital that afternoon, was a total pill that night, but bounced back to her old goofy, sweet self the next day. Her breathing improved immediately. It's odd not to be able to hear Hope from 50 paces anymore, but wonderful.

Both Oscar and Hope are doing great. We realize how infrequently we've updated the blog when we look back and realize what we've neglected to mention.

Hope started school in September. I drop her off about 9 and Mo picks her up about 3. We were dreading it. But Hope seems to be doing great. In a little more than a month, she's begun potty training and is weaning herself off bottles. It's five days a week and Hope is usually pretty exhausted -- no naps for little girls -- but she's been really happy since she started.

Oscar got a cranial helmet to correct a flat spot on the back of his head about three days before the walk. We were bummed, of course, that he'll need to wear it 23+ hours a day for the next 2-4 months. He may look like Spaceman Spiff, but he is utterly unbothered. His attitude seems to be: Hey dudes! I'm wearin' a helmet!

It's ironic, after nearly three years of fielding questions about Hope's size or her glasses, to answer questions about Oscar's helmet. The other day, in the Post Office, a clerk asked Mo if it was a fashion accessory. A few weeks ago, a girl at a toy store pointed at Oscar and screamed: Look! A baby in a helmet! Her embarrassed mother found us later and tripped over herself apologizing. I told my daughter, some kids are just born sick. We don't make fun of them.

Lordy, lordy, lady. Quit while you're behind.

There's a whole lot more, but not enough time. We're busy making cupcakes and preparing for Hope's third birthday on Halloween. She's a fairy princess. Oscar is a monkey. We think they look pretty cute. But neither seems thrilled by the prospect.

We're walking again

Last year, we fulfilled a promise to Will and honored his memory with the Walk for Will and Hope, a 2-mile leisurely trek to raise money for the Cornelia de Lange Syndrome Foundation. We didn't know what to expect, fumbled our way through and were knocked over by the reception, raising more than $6,000 for the foundation.

This year, the pressure is on. Between getting ready for Hope to start school next week (Lord almighty) a host of doctors' appointments, potential surgery to address Hope's tracheomalacia and figuring out when Oscar ever sleeps, we're sponsoring the walk again. It's at 9 a.m. Oct. 10 at Stony Creek Metropark in Shelby Township. Same Bat Time and Channel as last year.

More appropriately, Mo is putting it on again. She's the captain, quartermaster and ringleader. I'm the dork who yells into the bullhorn.

Like last year, we're not sure what to expect. Times are tough. We're reluctant to hit people up again after giving so generously last year. It's a long drive.

But we've always been surprised by folks' generosity. And, like last year, we know we can count on support from hither and yon. Unlike last year, we're making it easier for you hither and yonners.

Partnering with the foundation, we've set up a site through First Giving to donate directly to the CdLS Foundation in honor of Will and Hope. It's www.firstgiving.com/walkforwillandhope. We're also putting a link directly on the blog near Hope's photo. If you're more comfortable, you can donate directly to the foundation. The address is on that site.

Of course, we'd prefer to see folks at the walk. Like last year, we'll be doughnuts. New this year is a special guest appearance all the way from Bangor, Maine, of my parents. Some kid named Oscar will be there as well.

As will Hope, who if all goes well, will actually be walking part of the walk. She's getting very close and very determined. If not, she'll sleep through it like she did last year. Either way, it should be a hootenany.

Hope to see you there. And thanks for enduring the sales pitch.

Sibs

A lot of folks ask if Hope enjoys being a big sister. We think she might.

The first day back from the hospital, I had Oscar in my lap. Hope scampered up and reached toward Oscar. My heart began to melt. She reached farther and farther toward his head. "Get the camera, Mo," I whispered, certain that Hope was responding to her biological wiring to pat the head of her little brother.

Hope inched farther still across my knee. My heart thump-a-lumped. She got closer still. My mind raced with ooey-gooey thoughts, daydreaming in fast-forward that my life from now on would be filled with sticky-sweet confectionary moments like these.

Hope's little hand almost snatched Oscar's pacifier from his mouth before I got wise.

It was a lot like that for the first few weeks. We tried to force bonding moments. Hope seemed vaguely interested that we brought home a new receptacle for binkies and bottles. She seemed to think Oscar was OK but no more so than a wooden peg or her necklace of milk jug caps.

Since then, Hope is far more cognizant of the 12-pound kid than the 90-pound dog she's spent a lifetime ignoring. When she thinks we're paying too much attention to Ozzie, Hope grabs our knees, sticks her head in our face and whines. She had a rough couple weeks with frequent crying spells that could have been attributable to sibling rivalry, the arrival of her last two molars or something else.

But she's warming to him as well. She seems to like Oscar, but quite as much as her cat, Jack. Hope pats his head. She looks at him lovingly. She gets a big smile whenever he wails in agony. We like to think it's a smile of "I've got your back, kid" rather than one of sheer sadism, but you never know.

Meet Oscar Bryce Kurth