Sunday, September 25, 2011

Food fun

Like a lot of kids with CdLS, Hope has some eating issues. Nearly four, she's still a big fan of mushy food and very simple finger food like goldfish crackers. Chicken wings and ribs? Not so much. She lacks the coordination and muscle tone in her mouth to do much chewing, so like the geriatric set, she tends to gum her chow. If it can't be made malleable with saliva, forget it.

It's not just food. The same muscles used to chew food help form words and communication, which is also an issue. So Hope has two days a week of occupational therapy to work on exercises to help her chew, loosen her cheeks and remove some aversions to certain foods and textures.

We're delighted to report some progress. She's not there by a long shot, but Hope is slowly starting to take bites and chew some foods. No longer is simply inhaling her food like her dad going at a White Castle cheeseburger. She's taking deliberate, cautious bites and -- like always -- taking things at her own schedule and finding humor in the whole process. We're very proud.

Oscar also is going gangbusters on the food front and thinks he's ready for silverware and done with his wrinkly ol' parents at suppertime.

Wednesday, September 14, 2011

Fine dining

Good times in Seattle. Great company -- thanks, Aunt Molly, Uncle Al, Aunt Patti and Cousins Jeff and Mike -- good chow, super brews, fun runs and wonderful scenery. The kids did great. But we learned once again that they aren't quite ready for the white-tablecloth set.

P.S. -- We've been so lax about updating the blog these past few months that we neglected to mention that Joel is running the Chicago Marathon on Oct. 9 as part of Team CdLS to raise money for the Cornelia de Lange Syndrome Foundation.

We appreciate all who have been so generous over the years and cherish your continued support. To donate, go to Joel's FirstGiving page. We also have added a new link to the right.

Saturday, September 3, 2011


The woman eyed us in the Meijer checkout line, sizing up Hope and then Oscar as they jockeyed for the steering wheel in the little plastic car attached to my shopping cart.

"Are they twins?" she asked.

"No, not twins," I answered with a smile. "Nope."

"Really?" she said, clearly flummoxed that two little redheads so similar in size could NOT be twins.

The "twins" question is a popular one these days. I'm asked about once a day when we're out and about.

It's completely understandable why. Oscar had his 15-month checkup a couple weeks ago and was just over 22 pounds and 30 inches tall. Hope had a GI appointment last week and is almost 20 pounds -- Woohoo! -- and just a smidge over 30 inches.

Maybe I'm cruel, but sometimes it's funny to see people clearly stumped when I tell them they're not twins and leave it at that. Some honestly seem disappointed. It's amazing how much our culture loves the idea of twins. Excitement brims in some folks' eyes, smiles spread across their faces. "Twins?" they ask, with great anticipation, before I quickly dash their hopes. I can be a real downer.

Now, I realize I should probably be more up front with people. I should probably tell everyone who asks if they're twins that Hope has a genetic condition that affects her growth and that's why they're so close in size. Often, I do. Other times, I don't. It just depends on my mood.

Sometimes I feel like a bad ambassador when it comes to spreading CdLS awareness. I have an opportunity to teach people about the syndrome every day. But the truth is, some days, I just want to live my life. I want to take my kids to the grocery store, find a cart with the little car attached so one doesn't have to sit in the main compartment, and do my shopping.

Fortunately, I've gotten more and more comfortable about sharing that Hope has a genetic condition -- "syndrome" sounds scary so I just leave it at "genetic condition" -- so I'm getting better about opening up to whoever asks. And as I've learned time and time again, for the most part, people are coming from a good place when they ask questions. They aren't asking to be cruel. They're often asking to be friendly.

I realize the "twins" question will fade eventually away, replaced by other questions I don't have answers for yet. A few people have already commented on how quiet Hope is. How do you say, "She's nonverbal" or "She doesn't talk" in a good way? I don't know, but I'm sure I'll eventually figure it out.

In the meantime, I plan to enjoy my twins.