An e-mail from Jasmina

My dear friends,

Sébastien and me are doing fine…. he is learning how to crawl and with the help of our amazing Physiotherapy team Sébastien is doing amazing things…. well, he is also saying Crocodile, Papa uuuuuuuuups (this is a suprise for David), Mmmmmmmm for Mama, KaKa for his Physiotherapist Katherine, L’eau for water in french, encore, etc…. the list is never ending yeahhhhh our little monkey is speaking….

The other night when we were just getting ready to go to bed, we usually pray in front of our little shrine with his guardian angel and a Statue of the Virgin Mary and Sébastien said with me his Good night prayers and then he usually takes the picture frame that we keep beside our little shrine which shows his Papa and him on it and he kisses his Papa and then I asked him “Do you miss Papa….” and Sébastien looks at me and I ask him “would you like to call Papa?” and Sébastien takes the picture and puts it to his ear and starts babling away to his Papa…. “ohhhh” I said “you are soooo sweet Sébastien if Papa would see this, he would cry” and Sébastien takes the picture again and goes : “Papa do cr do cr” and pats the back of the picture with his little hand….. ohhhhhhhhh what an angel and what a beautiful gesture of a little miracle…. it made my week…

Well, I am also writting to you to please pray for Sébastien’s friend Brook and Tim especially as Brook’s family was getting ready to donate a part of her Mommy’s liver to little Brook but a cadaveres liver came available and the family was sooooo happy …. but the next day, today [Friday], little Brook had to be rushed back to the O.R. and the liver transplant did not work and her Mommy is right now in the O.R. herself to give to her daughter the gift of Life with a part of her own liver… to save her little one…..please keep them in your prayers……

And then there is our little friend Tim, he needs a liver and his Mommy only speaks mandarin and is all by herself and I remember the times before Sébastien’s transplant when the times where soooooooo hard and David would be here to support us and listen to me and my worries and comfort me and we were sooooo fortunate for all our friends and families that supported and prayed for us…… well I feel soooo much for this Mommy and her son as this experience is such a devastating one and you need people and friends and
prayers…..  Tim’s Mommy comes every day to see us with Tim and the only way we can communicate is by prayer,  some days she leaves our room just in tears…… soooooooo please if you have a moment please pray for Sebastien’s friends…

With Love, Gratidue and united in God
little monkey Sébastien xoxox David xoxox Jasmina xoxxoo

Hugs

Someone told me
That you might be lonely,
And being far away
There’s little I could say.
So instead,
an idea from my head
told me to send you
a HUG!

It’s Friday! What do you want to see more of on Sébastien’s new blog?

Crocodile

“Sébastien is into crocodiles!” Jasmina exclaimed over the phone. “He likes playing with Weebles. I try to encourage him to learn to kneel up in bed, by holding onto the railing and then getting him to stand…” The exercises are all part of getting Sébastien to develop his gross motor skills, whereas his fine motor skills are excellent.

During the weekend, David told us “Sébastien says ‘crocodile’ now! He actually said it on the phone: croc-uh-dile!”

For those who were wondering about Sébastien’s procedure on Friday: it’s called a Barium Enema and the tests revealed no anomalies.

A balancing act

Between hope and worry of Sébastien’s situation, there are the calm spots, when one simply listens and learns… They are the moments I most enjoy. Like when I hear Jasmina explain something I didn’t know before. It happened in our last call when we came upon the subject of Sébastien’s kidneys. It is unfortunate that he had a kidney failure, otherwise he might have had a faster recuperation. But, far from bitter, with an attitude that takes things as they come, Jasmina explains that there are two kinds of kidney failure… chronic and acute, or in her terms: “some children pee like crazy but don’t clear toxins, and others like Sébastien, don’t pee at all”. So besides needing dialysis to rid the body of toxins, Sébastien also needs dialysis to regulate his fluids and electrolytes. And in order to control the amount of toxins in his body, Sébastien has certain diet restrictions – like a controlled amount of protein - which helps a child grow and develop. Limited protein thus causes a slower growth rate. But far from worrying, Jasmina proudly tells me that Sébastien is 69.5 cm long. “Last month he was 67cm!” 

“Sébastien is an acrobat!” I tease thinking of how finely balanced the human body is. Sébastien is the acrobat walking a tightrope, as Jasmina and David are the safety net below him. We watch as he moves along, slowly, one measured step at a time.

Hello everyone

Our son Sebastien is undergoing a procedure tomorrow at 11:00 am so if you would all have a personal prayer in your hearts for him.  Many thanks,

Good luck big guy,

I love you, Daddy xox

Good sleepers are made…

“The nurse is making noise and my baby is sleeping!” Jasmina says in a voice that betrays just a little amusement. After all, how much can one expect from the noisy hospital staff who must take care of the noisy machines that beep and blink for their usually active patient. I’m used to such casual comments during a phone conversation… “I try to get Sébastien to nap during the day.” Jasmina tells me. “I find he doesn’t get enough sleep, and it’s important! They grow and get better when they sleep. So now, everyone knows… at 1:30, it’s his naptime.”

“Oh! Hi Fr. Peter!” she nearly whispers, and I go quiet as I try to imagine what the new visitor looks like. No one could get upset for the interruptions in the phone conversation seeing as Jasmina has the patience to attend to the many daily visitors that are all well-meaning.

I go for lunch, while her and Fr. Peter have a prayerful visit. From the table of the staff kitchen, I pick up the Globe and Mail, the paper I prefer, just like my dad. I glance over the headlines before stopping to read my favourite section: Facts and Arguments on the same page as Social Studies.

Most three-and four-year-olds, writes Marguerite Kelly in The Washington Post, “need about 10 to 12 hours of sleep out of every 24 hours to keep their disposition sweet, to give them a lot of energy and to grow a little taller, too. Studies tell us that children do most of their growing when they’re sound asleep.” To give them easier sleep, she advises outdoor exercise and staying awake between naptime and bedtime. “Good sleepers are made, not born.”

I smile. The Washington Post has just confirmed the motherly instinct.

A fundraiser for Sébastien that offers tax receipts

Michael and his wife Nathalie, cousin to David, have organised a fundraiser for Sébastien and offer the possibility of sending a tax receipt to those who donate. Their letter eloquently expresses the purpose of the fundraiser:

Dear Friends, 

I am writing this letter on behalf of the Hope for Sébastien fundraising committee. As most of you know, our little miracle continues to improve against all odds. For those of you who don’t, I would like to bring you up to date.  

2007 has been kind to the Forest’s. Sébastien has recovered from emergency surgery in January. At this point you wouldn’t even recognize him. He has begun eating! His NG Tube has been removed from his nose, replaced with a G Tube directly in his stomach. There is a new vitality in everything he does. It has even been confirmed that a projected date of three weeks from now has been set for Sebastien to become an outpatient.

Outside of the hospital room life goes on. For every family there is still a life to maintain so that when Sebastien gets better there will be a home waiting for him. The David Foster Foundation has helped tremendously in this respect, providing some of the basic living costs so that the family can focus on their most important charge: caring for their sick baby. 

The prospect of becoming outpatients is exciting for the family, but poses a monumental challenge. The estimated costs for specialized medical equipment, physiotherapy, speech therapy, occupational therapy, respite care and medicine vital to Sebastien’s survival will be $15,000 per month. As out of province patients, these costs are not covered. To cope with this financial burden, the Forest’s have so far successfully relied on previous fundraiser donations. I believe you will agree with me that there is a call going out to each one of us to step up and give generously.

As a father of a 17 month old son myself, when my wife and I visit this family at Sick Kids, we can only imagine what it would be like to have the tables turned and they were coming to visit us. In those moments, I can only say that how this family will keep going financially should be the furthest thought from their minds.  

On behalf of David, Jasmina, and Sébastien Forest, we would like to thank you in advance for your continued prayers and support, believing that God will bring His full and perfect healing to His son Sebastien.    

Faithfully yours,
Michael Smele

Nathalie writes in her e-mail:

If you feel called to help Sebastien and his parents with a financial donation, please write a cheque payable to: “North Bramalea United Church” with the words “Sebastien Forest” in the memo section. We have set up a one time event where tax receipts will be issued so please give generously.

Please mail your donation including your return home address on the envelope for tax purposes. Mail all donations BEFORE MAY 1st to: 

Hope for Sebastien fundraiser 
49 Nickel Crescent
Brampton, ON  L6S 4V6

Give life

“It might be a good idea to write about encouraging people to sign their donor card, and donate blood” a regular reader mentionned. “Yes,” I thought, “Jasmina has often mentioned it at fundraising events for Hope for Sébastien.” As it turns out, April 22 – 29 is National Organ Donor Week.

Of course, the new Manitoba licenses is the perfect occasion to sign a donor card. The province of Ontario is actually taking it a step further… In an article on April 15th, the efforts of Conservative Frank Klees to boost organ donation are outlined. He suggests a bill that: “would require everyone renewing or applying for a driver’s licence or health card in Ontario to declare their willingness to donate their organs, decline to donate them or say they haven’t made up their mind yet. If someone doesn’t complete the organ donor questionnaire, Klees said the application would be rejected as incomplete.” As Mr. Klees states, “transplant technology has advanced in leaps and bounds in recent years but organ donations haven’t kept up”. New Democrat Peter Kormos has another view: “neither the Liberal government nor the Conservatives are courageous enough to take the necessary steps to help the 1,748 patients currently waiting for organs in Ontario”. Mr. Kormos currently “has a bill before the legislature that would make everyone an automatic organ donor unless they opt out” and argues that Mr. Klees bill will not increase organ donation, “because it gives people an easy way out”.

I’d never heard of the “automatic organ donor” idea until Jasmina and I were talking one day and she said that that is how it is in Austria. TransWeb, a site “all about transplantation and donation” gives an educational overview of the whole process as it is in North America.

As for blood donations… Monty Python has fun with the idea:

UPDATE: The Globe and Mail has an article that further discusses the issue, entitled: Organ-donor rules wait till after Ontario election

Bunny ears

“How is Sébastien?” people ask David, delighted to see him back in Winnipeg, enjoying a night out with friends. The lounge is dark and we sit at tables that face large windows looking out to the downtown buildings. On the other side of the lounge, an older band plays its repertoire of Beatles songs. David is always happy to oblige… “He’s doing good!” And usually the next question is “When are they coming back?” At the back of some people’s mind is the memory of 6 months… Others have forgotten, and simply miss Sébastien’s smile and Jasmina’s infectious cheerfulness. “They’ll be there about 2 more months.”

“He’s so cute” David will often say, or the alternative french: “Il est tellement crotte!” This time back from Toronto, David brought back pictures… “There’s one with Sébastien wearing bunny ears” I describe to a friend.

“Yeah,” David continues, “we made an Easter egg hunt for him and his cousin and a friend. We put eggs on a plate and hid them.”
“Was he excited?”
“Yeah! He would look and point!” David says imitating Sébastien’s big eyes and chubby outstretched finger. And we laughed, imagining our bunny-eared transplant patient. Check out Flickr for more Easter pictures!

The short bowel syndrome heroes

Not long ago, the Toronto Star published a special section in their newspaper, concerning SickKids. One article in particular pertained to Sébastien, explaining Dr. Paul Wales’ initiative to save more children who are born with Sébastien’s condition. Dr. Wales took an interest in short bowel syndrome after seeing the case of a baby girl seven years ago. “Doctors are faced with a no-win dilemma: let the baby die that night or perform the transplant, which would give her six to 12 months of life before a ‘miserable death’”. After earning his master’s degree in Scotland, he returned to SickKids in 2002 and organized GIFT – the Group for the Improvement of Intestinal Function and Treatment. As Hospital News describes, it began as multidisciplinary “research group looking to develop best practice standards for the treatment of intestinal failure”. It is interesting to note that in 2001, there were about 20 new cases of Short Bowel Syndrome in a year at SickKids NICU. Jasmina has already mentionned Dr. Wales with admiration, understandable when you read what motivates him: “I always think to myself, ‘What would I do if this was my kid?’”.

So what does GIFT do?

• GIFT has a standardized approach
• GIFT puts babies on transplant lists sooner, “raising their chances of making it to surgery”
• GIFT assures continuity of care by meeting weekly to discuss patient cases and treatment plans
• GIFT thinks of ways to improve bowel function so that prolonged TPN isn’t necessary, in order to avoid a transplant

GIFT has become the largest program of its kind in Canada and caters to over 80 patients. The program obviously helps: “when 54 newborns with short bowel syndrome treated under GIFT over a three-year period were compared with 40 pre-GIFT newborns, the success of the program was clear: while the overall mortality rate stayed the same, the mortality rate for the babies with liver failure dropped to 46 per cent from the pre-GIFT era’s 90 per cent.”

What kind of new therapies are the team trying? For a detailed look, check back to find out!