Burger King star!

Sébastien is going to be featured on the Burger King tray liners within the coming year. I didn’t even know that Burger King supported SickKids. But as Laura Bradley from the SickKids Foundation explained to Jasmina: “Each year, Burger King works with SickKids to tell stories about the impact the hospital has on the lives of patients and families across Canada. Every year, we try to identify new patients from each province and feature their story.” Jasmina agreed and the following write-up of Sébastien, along with his photo will make their appearance on all Burger King tray-liners in the province! (I’m not sure if it’s the province of Manitoba or the province of Ontario…)

Sébastien has faced the struggle of life and death since birth, but his will to survive is strong. Before birth, doctors in Winnipeg discovered that he suffered from gastroschisis, a rare disorder that disrupts the lining of the abdominal wall. He was born prematurely with intestinal problems causing a condition called short-gut syndrome. Often, the treatment for this is bittersweet because it allows children to live but can damage the liver. Unfortunately, Sébastien’s liver function deteriorated as a result of the treatment.

Toronto’s Hospital for Sick Children is a world-leader in the care and treatment of children with short-gut syndrome. Sébastien’s family decided that his best hope for survival was a transfer to SickKids.In August 2006, Sébastien received a life-saving bowel and liver transplant. As a common result of the double transplant, Sébastien’s kidneys shut down. Until they can function normally, or he undergoes a kidney transplant, he will receive dialysis treatments.

After two years at the hospital, Sébastien continues to call SickKids home. His hospital room is decorated with his favourite toys and he has a wall calendar of drawings indicating his daily schedule. His health keeps wavering but with each new struggle, Sébastien continues to fight. SickKids Foundation supports The Hospital for Sick Children and research into childhood illnesses across Canada, improving the lives of our children today and in the future. Burger King has contributed over 1 million dollars to SickKids Foundation since 1999. You can help by dropping a coin into a coin canister at our ordering counter. Thanks for helping BK to make a difference.

Sébastien’s bedtime

The last of the three videos has arrived! Sébastien is getting ready for bed. Jasmina teaches Sébastien to brush his teeth and wash his hands. Enjoy!

Through the lens

David came back last week and gave us the Toronto Star Special Section. Of course, the first impulse of the proud godparents that we are, is to look through and find something about Sébastien. And there was a picture of him… he’s sitting at a table concentrating on an activity to develop his motor skills. The caption under the picture read something to the effect of Sébastien being “two weeks old” and following physiotherapy. It made us laugh. At nearly 20 lbs, Sébastien is pretty big for two weeks and far too precocious!

But that’s not all. Our “poster child” is featured on the Toronto Star website. If you watch the slideshow here, there are three pictures of Sébastien. The cameraman managed to capture Jasmina and Sébastien together, in a precious moment, as they are resting from the session. I was only too delighted to find their pictures and share them with you!

By the way, there are new pictures of Sébastien on Flickr!

Sébastien eating…

We are happy to present to you the second video of three. Ever so gently Sébastien is starting to eat. He tastes, explores textures, gets messy and sometimes he lets things fall, dropping them off the edge of his high chair table with such innocent eyes. The doctor advised Jasmina and David not to discipline him while he eats. Usually transplant patients have an aversion to food and won’t eat. So, Sébastien is encouraged to explore this new world of food in any way he wants. Incidentally, I think his parents enjoy watching him, just as much as he enjoys the new experience.

The Surprise!

Post Op

My curiosity got the better of me. I found Jasmina’s new pager number in my e-mails and left my phone number. When she did call, perhaps an hour later, I was surprised. The new pager really worked!

“I was wondering how Sébastien’s operation went!” I explained. I vaguely guessed that others were curious too, as it had been mentionned earlier.
“It went good. They had to place it higher, closer to his ribs. He had an allergic reaction to the anesthetic. He cried, but he is doing better now.”
“Oh good!” I said, doodling on a post-it note and trying to imagine a tube to the stomac close to the ribs. Had the phone been cordless, I probably would have been walking around in circles, burning ice cream calories.
“Soon, they’ll remove his NG tube. It will be good for him, he won’t have any more acid reflux!”
I laughed. Acid reflux reminded me of commercials. The ones where the soothing pink liquid is pictured making its way to the stomach and extinguishing the pain. And for some reason I always imagined it being an elderly person’s problem. Something that came with age. Wikipedia proves otherwise.

“The doctors were actually surprised! He was sitting up not long after the operation.”
“Wow! That’s great!”
“Yeah! We had a meeting this morning with the doctors and Sébastien might be an outpatient in three weeks!”
“Really?” I exclaimed, already excited at the thought that they were one step closer to coming back home. “So, you would be staying at Ronald McDonald House together?”
“Yeah… we’re getting close to the six month limit for staying there. We’re going to meet them and see if we can get an extension.” My voice betrayed some worry as I wondered where else they could go. “But we’ll deal with it when it comes.” She reassured me. “Today the radio in Winnipeg interviewed us on the phone! We’ll be on the radio at Sick Kids at 10 o’clock on Thursday.”
“The Toronto radio?”
“Yes”
“That’s right, we’re probably able to hear you on the internet…”

And we talked of their possible visit to Winnipeg, the goings on in Toronto, the books we’ve read and home renovations. And somehow, an hour slipped by, and my post-it note ran out of doodling space.

“Oh! We’ll be on tv on Sunday. On CBC newsworld, between 10 and noon.”

Tune in if you have the chance. And check back here soon… we’re putting a surprise together!

Events and miscellany

When I visit the Sick Kids website, I’m always amazed by the number of fundraising events that are organized. Not least among the upcoming events is the Radiothon for the Toronto Sick Kids Hospital, broadcast live from the Atrium of the hospital March 28th, 29th and 30th. Toronto’s 99.9 Mix FM will be supporting the annual event.

In Winnipeg, the 2007 Children’s Miracle Radiothon will be broadcast live from the Children’s Hospital March 21st-23rd. The event is presented by Hot 103, which last year, helped raise over $500 000. Listen in to hear a telephone interview with Jasmina, David and Sébastien.

I came upon a beautiful and informative website called SavvyMom while looking for inspiration. For mothers and grandmothers out there who like to take child rearing with a sense of humor, babyteasewear has just the thing : cool clothing for cool kids. Take a peek! It’s almost tempting not to want to buy a somthing for Nathalie and Nolan’s baby shower this coming Sunday!

A cheery call

I try to reach Jasmina to tell her to take a peek at the new blog - I’m anxious for her reaction, but she says she’ll call back. Right now she is busy: Sébastien is eating, carrots, pizza, watermelon… and they have a visitor. The last time I called, I was excited to catch Sébastien’s voice in the background saying “Go, go…” Every child is special, every child is the cutetest, and more so when you know them. Sébastien certainly charmed a reporter here last Christmas…

Later in the evening, the phone rings as I sit watching the Academy Awards and guessing with Christian which nominee will win the award over Lemon and Ginger Yerba Maté. As soon as I say “Hello” Jasmina passes the phone to Sébastien who is in a cheery mood after his bath and ostomy change. He is babbling and the bird-like twitter makes me smile as I put him on speaker phone for Christian to hear. We listen, as though we were spying in on his imaginary conversation with an invisible character – perhaps Dora the Explorer. I suddenly realize that Sébastien is changing and feel a tiny regret that we’re so far away. Jasmina comes back on to say that he is beginning to stand by himself and teases saying that by the time we come, he’ll be walking. David is coming back on Tuesday and is bringing with him a videotape of Sébastien. In anticipation I’ve set up a YouTube account. Check back soon!