Choir practice

Tuesday evening found us sitting on the floor beside Sébastien, playing with toys, getting our nose pinched off, or reading a book… “Like old times!” we said to David and Jasmina. Like almost two years ago, when newlly married, my husband and I would find ourselves at Dave and Jasmina’s. But it is a bit different… We worry less, his sleep schedule is regular, and we know he’s closely watched by a capable medical team.

Last night, it was an informal choir practice, when Sébastien, David and Jasmina showed up. Sébastien’s grandpa was directing and Sébastien seemed to enjoy the singing… though when he came in, he’d just woken up and had his finger to his lips, as though there was too much noise. He quickly got into the spirit, and suddenly, at the back, there were giggles… Sébastien, attentive to his grandpa, had decided to imitate him, and was directing the choir from the rear. Such a sweetheart!

Welcome Home!

 

Jasmina and Sébastien are home for a few week visit! We took the liberty of decorating the house… And giving credit where credit is due, Martha Stewart was the inspiration.

And this was the makeover team…

Sébastien’s high liver levels were investigated, but nothing was found to be the cause of it… So, he and Jasmina are happy to be making their way home today!

We’re so excited!

That was supposed to be the title of this post… David, Jasmina and Sébastien were coming home today, on a flight arriving in the afternoon. But… David called yesterday morning and said that the liver numbers were high. Meaning a biopsy in the next few days and, perhaps only a steroid treatment that could be administered here in Winnipeg. Sébastien is happily oblivious to his liver levels… spreading smiles wherever he goes. More news soon!

As another week closes…

“There are only two ways to live your life.
One is as though nothing is a miracle.
The other is as though everything is a miracle.”

- Albert Einstein

When words leave off, music begins

Heinrich Heine wrote that quote… or perhaps he said it, illustrating some of the beauty of music. Music is magical… Have you ever been caught in a moment when you didn’t want the song to end? I’ll confess that sometimes, when I come home and a song is playing that I like, I’ll not get out of the car until it ends, savoring the moment as though the notes were too delicious to be left unheard.

Perhaps it is like Victor de LaPrade said: “It is incontestable that music induces in us a sense of the infinite and the contemplation of the invisible.” Or perhaps just as simple as Jean Paul Richter put it: “Music is moonlight in the gloomy night of life.”

My husband and I attended Josh Groban’s concert, and left with more enthusiasm than any other concert we’ve attended. He’d transported us for awhile, away from our reality, into a place where shandeliers sparkled, where girls danced, where lilypads floated onto glass ponds bearing candles at dusk. If we let it, music can take hold of our heart…

Everyone has their favorite songs… Songs that motivate, songs that inspire. For Sébastien’s Gift of Life celebration, a cd of favorites was made and given out as a prize during the diner. This is the list:

Life is Life (Opus)
You are Loved (Josh Groban)
Voices that Care (David Foster)
You Raise Me Up (Josh Groban)
Somewhere Over the Rainbow (Ray Charles)
Angel (Sarah McLachlan)
On the Radio (Regina Spektor)
Living on a Prayer (Bon Jovi)
Walk on Water (Lindsey White)
Lullaby (Josh Groban)
Keep Holding On (Avril Lavigne)
Stand By Me (The Temptations)

And to end this post… I can’t help but include a video clip… It is worth watching!

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.

Home in time to see the leaves change

David is back in Winnipeg, continuing his back-and-forth swing between home and Toronto. He continues to delight us with anecdotes of Sébastien’s improvement. To say that we’re proud of our godson’s progress would be an understatement…

“When we go to the mall, he makes everyone laugh - he waves to everyone! I guess it’s the sparkle in his eyes or something. When we went in the elevator at the Delta, I asked him: ‘Where are we going?’ ‘En bas!’” David laughs telling us motionning like Sébastien does, pointing to the floor. “Just the way he says it! I asked him: ‘En haut?’ ‘Up!’ he said pointing to the ceiling.”

I show him the group created on Facebook and we look at the pictures and video posted by Echo the mother of a little girl at SickKids. The video shows Sébastien sitting with David, going through the motions of the “Head and shoulders, knees and toes” song, sung by Dora, during the Gift of Life celebration at SickKids. Noticing Sébastien’s soother, David says: “Sébastien doesn’t have his soother anymore, he doesn’t want it.”

Sébastien’s platelets are in the range of 265… the highest amount he’s had so far. He’s producing them himself, unaided by transfusions, and receiving pheresis once a week, besides the usual dialysis. “He gets so excited when we leave the hospital. He doesn’t like being in the hospital at all!” David continues.

Sébastien’s good health has prompted doctors to allow Sébastien to be discharged and a trip home to Winnipeg is being planned for this month. Jasmina is very excited to come back to Winnipeg and enjoy some family time in her own house. Afterall, it has been a year and a month since Sébastien left for his transplant… a small hospital room was “home” with visits to Ronald McDonald house when things were well, and when Sébastien’s health was stable enough to carry all the supplies and equipment nearly a kilometer. And then with a recent move to the Delta, nearer to the hospital, under the same arrangement as with Ronald McDonald House, laundry still needed to be done at Ronald McDonald House. It’s not a short walk when you have a heavy bag of laundry to lug along.

Until Sébastien and Jasmina come home to the leaves changing colors, Sébastien still blows kisses to strangers, or will “steal” your nose and throw it away, like his “Papa” does to him to tease.