May’s letter to Sébastien

Dear Sébastien,

It’s the end of May and summer’s warm days are approaching. You are becoming quite the conversationalist on the phone… When I call, you answer with a breathy “hi” and I’m so happy to hear your voice. You’re sounding so chipper I miss you even more and ask your Mama to give you lots of kisses on mine and Christian’s behalf. You’ve also learned to say “good” when I ask “How are you?”. But you know what was the cutest? It was when I answered the phone and passed you to Papa… you were so excited you carried on a conversation for much longer than you would have for anyone else. Papa had to guess some words, but you didn’t want to give the phone up. You were pretty happy to hear his voice. When we ask you what Papa does out here in Winnipeg, you know the answer… “cut” you say, because “hairdressing” still has a few too many syllables. I’ve heard that you’ve seen Barney recently…

So stay as happy as you are…
We miss you lots,
Ta marraine

Dear Marraine,

Yup, I saw Barney at the beginning of the month. I danced and stood, holding on to the white picket fence at the front. Mommy took pictures. She’s “Mommy” now… because I grew, I decided to change her name. But I still love Dora. Dora comes with me everywhere, and must do everything I do. I’m hoping Mommy and Papa get the hint to make me a sister soon… I’d be the coolest big brother because I can wear my hat backwards and make the “peace” sign with my two fingers. Tell them that for me, o.k.?

Sébastien

Dear Sébastien,

I’ll tell you a secret… I think Mommy and Papa are thinking about getting you a sibling. But I’m sorry to say that I don’t think they’ll call her Dora if it’s a girl, or Diego if it’s a boy. I don’t think there’s enough Spanish in your family… And besides, they’re having a lot of fun with you right now… And, I’ve heard rumors that you might be getting a specially-designed walker to help you move around. We’re hoping you have fun, and I’m sure Mommy will find a way to have Dora walk with you. In the meantime, enjoy Grandma and Grandpa’s visit!

Love,
Ta marraine

May’s video of Sébastien

David came back from Toronto Sunday evening. After a late supper and a quick trip to Lick’s (our favorite ice cream place, tempting us from only a few blocks away) David showed us Sébastien’s most recent pictures and videos. So, during these past few months, when it has been relatively quiet on Place de choix, Sébastien has been doing well. In a way, these times, when there hasn’t been much to say, have been good for David and Jasmina, before all the upheaval of another transplant…

News already…

As I hit “Publish” on the previous post, I notice I have a new e-mail. Jasmina found the time to give us news of this morning’s procedure…

Hello everyone,

Sebastien got all prepared by the team of the Sick Kids hospital and at 6:30 a.m. this morning the team from St. Michaels Hospital came to get Sebastien connected to all the leads and the special machine that will be part of his procedure, he will be the first smallest child having a capsule in him travel through his Gut and this capsule will take immages during the time it is in Sebastien and will help us to find his source for his bleeds….. the very high risk is that this capsule could get stuck and a big team is ready to retrive the capsule via Surgery if this is the case, but we were praying that Sebastien could make it without any trouble that this capsule gets stuck and just passes through his Gut…… Sooo here we are this morning leaving the ward at 7:30 a.m. to the O.R. nervous and anxious entertaining Sebastien with his Bubbles and his Dora, Elmo and Barney to distract him from all the many teammembers preparing him….. there we were in the O.R. waiting room watching the clock as the time approaches as the Anasteoligis approaches us and tells us that Sebastiens Potassium is to high to go into surgery….. well, the next thing we knew we were rushed to Dialysis to lower his Potassium and get him hopefully back for 2:00 p.m. to try this capsule procedure….. Sebastien all happy and relaxed is happy about his ride to the O.R. and back to the ward, and to Dialysis we roll…………… well we got him on the Dialysis machine and off he was and running on the machine and us trying to keep him distracted from wanting to eat…… well just around 10:00 a.m. the Doctors came and the Team and told us the news that they have to canncell the procedure as it is to difficult to organize all the 2 different teams to be there at 2:00 and it is hard to have the O.R…………………. well here, well, maybe it was not ment to be today

Well, maybe some really good Angels are just watching out for our dear Sebastien and just today is not the day for such a complex procedure…….the team is trying to organize a new date and we will inform you as soooon as we know…..

Thank you all for all your support, your prayers and words of encourgement during this very stressfull time and we are soooo gratefulll and blessed with your support…

United in Prayers and with Thanks and Love

little monkey SEbastien xoxoxoox David & Jasmina xoxoxoxo

Heads up!

Sébastien is going into the O.R. today to receive the camera-pill. He’ll be the youngest patient to receive it, and should it get stuck, the doctors will operate him to remove it, re-connecting his bowel at the same time. The doctors hope to find the source of Sébastien’s occasional bleeds, since the endoscopy and the colonoscopy showed nothing unusual. Talking with Jasmina last night, Sébastien seems to be doing fine. “He’s getting so much longer! Last month he was 83 [cm long] and he’s grown since then. His new thing now is to hold up his two fingers: Peace! And he wears his sunglasses too.” Jasmina worked with the hospital to allow Sébastien to attend a Barney event on May 3rd at Ontario Place. Sébastien, she says, was so impressed. He stood and danced in his own way, excited to be out to see one of his favorite tv characters live.

David was back in Toronto for Mother’s Day, his week-long visit providing Jasmina with a bit of time to catch up on sleep. Jasmina was happy to tell me that on Mother’s Day, the three of them participated in Megan’s Walk, creating – with nearly 1000 other people – a huge hug around the SickKids hospital. “Even David was really touched.” Jasmina told me. “It was the first time he participated. Kids in the hospital showed posters thanking the participants outside, and kids outside were given chalk to draw messages on the sidewalk for the kids inside.”

Wishing you all a lovely week! And good luck, little Monkey, for today’s procedure!

Jasmina writes…

At the beginning of the week:

Here in Toronto Sebastien got really sick and was dehytrated just in a few hours by  1 liter and he struggled with a high fever of 39.9 for almost 24 hours…… it was horrible…. than he got really fluid overloaded and had immense tummy pain and stardet bleeding a little bit…. well I am just soooo thankfull David’s mom was here and helped us out a lot and that David came after I called him at 5 in the morning to tell him that Sebastien wasn’t well at all and he was on the next plane….. I told Sebastien his PAPA was on his way and with a very weak voice he sad “happy, happy” it made me cry….. well today he is a little bit better but not quiete himself and looooooooooooooots of things are out of balance still since his unknown cause of diarrhea and fever etc….. Thank God he is doing better….I am still detirment to get him to Barney on May 3 sooo we are praying each day to be able to make Sebastien’s little dream come true…… he would be sooooooooooooooooooooo amazed ….

Well, I can’t wait for Sebastien to feel better again and everybody was really concerned about him one evening ( 2 nd ) evening that he got sick, they had the crash cart right outside his room and we had non stop nurses around him as well as doctors and also in Dialysis everybody was ready and prepared for the worst with their crash cart and strecher…..it was scarry…. the next morning Sebastien looked a little bit better and we orderd him some white bread and chicken noodle soup to see if he was hungry…..

Yesterday:

I am sending you this e-mail to ask for your prayers for our dear Sebastien as he has a few quiet complex test coming up and we need your support of your powerfull prayers

Sebastien as you know has ongoing bleeding issues since Jannuary and the medical team has been very supportive in investigating with all their test that they could offer that are not invasive…. well we need to look at a more invasive test and leading up to this day May 13 th we are having multiple tests sooooo please pray for our amazing boy that God will give him strenght and comfort and to guide the hands of the Doctors and Nurses to find the source of his bleed and fix it and  that those bleeds are stopped and a speedy recovery for our little monkey that he can eat what ever he wants and run around after his ball The team is also preparing to hopefully close at the same time on May 13 th his Ostomy sooooooooooooo yuppppppppppeee….. that will be sooooooo awesome….. maybe please say a little prayer for his parents to as it is a quiete nervose time leading up to it and the day…. thank you sooooo much and thank you for all your prayers….. I know deep down in my heart he will be surrounded by soo much love and prayer during his surgery…. xoxoxoxxooxoxoxo

With Love and Prayers xoxoxoxxoxox

Jasmina xoxoxoxxoo