Wednesday, November 30, 2011

Ms. Potato Head is in the house


Two and a half years ago when we first started researching glasses for Hope, her ophthalmologist recommended a pair that would've made Mr. Potato proud. They were one long piece of plastic that you basically bent at the arms and secured with a strap to keep them on. They weren't exactly flattering. For anyone -- Mr. Potato Head included.

Fast forward two years and Joel and I have come to realize that Mr. Potato Head may have been on to something. Hope's wire-rimmed glasses are adorable but have been a bit of a pain in the tookas. More pieces have meant more things that could break, and they have -- mostly the arms. For one long stretch, we had to hot glue and DUCT TAPE one of the arms on every day. I have far more important things to do than tape Hope's glasses every day -- like laundry. I'd much rather be elbow deep in a 6-foot pile of baby clothes every day. Now, that's fun.

Anyhow, after getting Hope a new prescription this fall, we came to an important decision: no more cute, wire-rimmed glasses. We would succumb to Mr. Potato Head's charms.

So here we are and we are THRILLED. Seriously. If this wasn't a big, old "Don't judge a book by it's cover" lesson, I don't know what it is. Hope loves her glasses. I think the new, stronger prescription has made an incredible difference -- she's studying things from further away and tracking people across rooms, both of which she rarely did with her old glasses -- and we got the transition lenses so they turn into sunglasses as soon as she comes into contact with UV light. Hope had a corneal ulcer almost two years that left scar damage and makes her very sensitive to light so that's important. They're awesome.

Aesthetically, she looks a bit like Edna from Pixar's "The Incredibles" or a German librarian. We think she looks pretty hip. Thanks, Mr. Potato Head. We had no idea you were so fashion forward.


Monday, October 17, 2011



I went running yesterday -- "running" might be a bit of an exaggeration; a turtle could beat me in a foot race -- and the thought hit me again: Joel ran a marathon. He ran 26.2 miles. Pardon my language, but how frickin' cool is that?!????

Joel finished the 2011 Bank of America Chicago Marathon on Oct. 9. It was hot (a high of 77), insane (45,000 runners; an estimated 250,000 spectators), and incredibly gratifying. Joel exceeded his fundraising goal as part of Team CdLS and raised more than $2,800 for the CdLS Foundation. He finished in 4:44, about 15 minutes slower than he would've liked, probably due to the warm weather, but still great. He said he couldn't have done it without his amazing "Curb Crew" -- me, my mom, Anne, my brother-in-law Jeff, Mike, Hope, Oscar, and my niece Rose -- to cheer him on at four stops along the course. I'm convinced we deserved medals too for navigating Chicago's clogged streets and trains, which was a bit like surviving the "Amazing Race."

To everyone who supported Joel and our family, thank you so much. It was such an incredible experience and it felt so good to see him accomplish this goal, to give back to the foundation, and to honor Will and Hope.


Sunday, September 25, 2011

Food fun

video

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

video

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

Twins?




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.

Wednesday, June 15, 2011

So long, Dr. Brown




I dreamed about this day, toying with it in my brain. What would it be like? What would I do with all that extra time? Read a magazine? Fool around on Facebook? Play with the kids more?


Alas, it's here. Earlier this month, for the first time in THREE AND A HALF YEARS, we are bottle-free. Hope has been off bottles since January and Oscar finally got the hang of sippy cups about two weeks ago. Dr. Brown has finally left the building.


No more nipples that flow too fast or too slow. No more scraggly bottle brushes. No more annoying Dr. Brown middle compartments that supposedly prevent your baby from swallowing air (the verdict is still out on that). No more microsteam bags.


Hallelujah.


I have no idea how much time being a bottle-free household has actually freed up -- do parents ever really have free time? -- but I'll take it. I love not having a big bowl of soapy water with soaking bottle parts cluttering up my counter. And I dismantled our double-decker bottle rack earlier this week. So long, friend.


Now, on to bigger things: potty-training and self-feeding. When that happens, I don't think a simple blog post will suffice as celebration. I may have to organize a parade.



Wednesday, April 27, 2011

Paws off the Easter eggs, Lulu


If you've ever wondered if dogs find Easter eggs appetizing, they do. Our dog helped herself to a few of ours. Or six.

It was like something out of a sitcom. We decorated our eggs -- Hope was a little more into it this year and Oscar just wanted to the lick the big, cold things we kept handing him -- and then I went to the store while they dried. Joel gave the kids a bath.

When I got back and started to dismantle our dye operation, I noticed how few eggs we had. We'd only dyed 13 eggs but I could only find seven on the table. I asked Joel if he'd already put some in the refrigerator. Or did he eat some? Nope and nope.

That left one big, fat dog as the culprit. And she was so stealth about it. Joel didn't hear a peep. No other eggs were tipped or tampered with. It was like six just vanished. She could've at least challenged us to a game of cracks before she scarfed 'em all down.

But aside from our egg-head dog, our Easter was really nice. We had a low-key Easter egg hunt in our family room and then went to my parents' house for brunch. The Easter Bunny hid Hope's basket in one of her favorite places these days -- in the bathroom atop the toilet seat. Disgusting, I know. But we -- ahem, the Easter Bunny -- wanted her to find it on her own and this kid loves the bathroom, especially lifting the toilet seat up and down repeatedly and throwing bath toys in it. The toilet is cool and cleanly for kids to play with, right?

Oscar's basket, meanwhile, was hid next to another hot spot around here: The diaper pail for soiled cloth diapers.

It's hard to believe that this year marked Hope's fourth Easter. She was so tiny on her first Easter -- not even 8 pounds yet -- that she fit she just fine in a regular size Easter basket.

Last year, I envisioned Hope being steady enough on her feet by this Easter that she'd be able to carry a basket and bend down and pick up eggs. But we're not there yet. She's not strong enough or coordinated to hold a basket, stop, bend down, pick an egg up, and put it in. But one thing at a time. This time last year, she still wasn't walking on her own. Hopefully we'll get there one day.

Lulu, meanwhile, seems to have had no problem digesting six eggs. She had some toxic gas but that's just a normal Sunday for a dog who will eat any bodily fluid. A tip, though: Steer clear of her kisses.





Monday, March 21, 2011

Resilience




Sometimes my heart aches for CdLS kids and how much they have to go through.


This winter has been a doozy for so many. I know of at least three (thanks to the wonders of Facebook) who've gotten so sick in the last couple months they've had to be put on ventilators and were literally fighting for their lives. One developed pneumonia and sepsis. Another little boy was sedated and sick for days. Another little girl got RSV -- a serious respiratory virus -- earlier this winter and also was critically ill. Thank God, she's home now, but the other two are still in the hospital.


With so many of our kids, their resilience AMAZES me. From reflux issues to sinus problems to muscle weakness to teeth problems, their challenges are endless. On top of it all, many can't even tell loved ones if they're hurting because they're non-verbal. And yet, they trudge on, fight back, and endure.


Our little Hope is no different. I feel so incredibly grateful that she's been fairly healthy so far. Still, there are times that I look at her and I'm awed by how hard she's had to work for things that come effortlessly to others. Just learning to sit didn't happen until she was 13 months old due to low muscle tone. She was 9 pounds when she finally sat on her own. 9 POUNDS!


Today, she's walking; getting into sit without a problem; pulling to a stand; and can stand unassisted (funny as it sounds, she could walk before she could just stand, which required a lot more strength). She no longer uses binkies or bottles, and we're full-steam ahead into potty training, which is going surprisingly well. She usually goes every morning on the potty but is inconsistent the rest of the day.


Are we anywhere near being fully potty-trained? No. But we're getting there. Every time she does her business, she gets a twinkle in her eye and grins like "I have a little present for you!" All this from a little girl I worried might never walk or be potty-trained. Ever.


Anyhow, I just wanted to send a shout out to all of the children I know with CdLS and their parents. You amaze me and remind me daily that our kids are fighters.


Wednesday, March 2, 2011

Spread the word to end the word...








Hi all!

If it seems like we've abandoned the blog, we haven't. We've been on an extended hiatus. In between work, the holidays, visits from relatives, a recent chili cookoff fundraiser for a dear friend -- oh, and raising two kids -- we've been kind of distracted.

Things are good, though, in this neck of the woods. Hope is loving school, making good progress with potty training (she went No. 2 TWICE today on the potty; woohoo!), and working on a Picture Exchange Communication system. She's still the busiest little thing around, playing with such vigor I swear if we could just harness her energy our electric bill would be a lot cheaper. She's still really into books, stacking cups, and any and every cupboard or drawer she can find. Joel and I joke that sometimes she treats play like its a 9-to-5 job. "Time to stack the cups..."

Oscar, meanwhile, is growing and developing at lightening speed. Where did 9 months go? He's creeping all over the place, exploring everything he can get his hands on, babbling up a storm. Today, he had a major meltdown because I dared to take him away from a little activity table he was playing at to change his diaper. He was crying so hard he nearly hyperventilated. Please don't tell me his sprouting red hair has a temper to match.

I decided to write tonight because I want to spread the word about a campaign the Special Olympics launched today to end use of the word "retard."

Oh, how this word sends shivers up my spine. I've heard it everywhere -- from friends, relatives, colleagues, teenagers who think they're being funny. They're not. I often think that friends, relatives, or colleagues don't even realize how insulting and hurtful they're being when they use the r-word, especially to Hope. But they are.

Let me be clear for those who may not know: Hope is considered "mentally retarded." The correct terminology is cognitively impaired or intellectual disabled. Does that mean Hope can't learn things? Absolutely not. But does it take her longer than other kids? Yes.

Why is the r-word so offensive? It's offensive because it degrades people like Hope. It's used to describe someone as stupid or dumb. But what people don't realize is who they're really insulting is people with intellectual disabilities like Hope when they casually throw out the r-word like it's no big deal.

The Special Olympics' campaign is called "Sread the word to end the word." Take the pledge -- do it here -- and pledge not to use the r-word anymore. Because the next time you do, you're making fun of Hope and everyone with intellectual disabilities like her.

And that's not OK.