This is our little family out near the water in Coburn in September. Check out Flickr for more pictures from this past summer and fall.
This is Sebastien as Angel Gabriel. He is constantly looking for us in the crowd and is upset as he cannot find us, and forgot to sing his song… He is still very cute “quiet as an angel”…
Sebastien as Angel Gabriel at his school Christmas play just before putting on his huge wings….. he was soooo cute…… we will try posting the video of the Christmas play…..
We wish you all a blessed and Merry Christmas surronded by your loved ones and embracing the beautifull gift of Baby Jesus coming to our hearts.
Frohe Weihnachten wunschen wir Euch allen und danken fur Eure Unterstutzung fur unseren lieben Sebastien. Das Foto zeigt Sebastien als Engel Gabriel fur das Krippenspiel in seiner Schule.
Please also check out Jacinta’s Blog – it’s sooooo cute – www.dearjasmina.com
…… Happy 5th Birthday Sebastien ……. we are so proud of him and what a blessing he is to us and the picture shows SEbastien at school where he celebrated with his little friends sourrounding him ……. this is what life is all about…… Joi de vivre and our dear Sebastien has so much Joi de vivre and it is so wonderful to see him celebrate this milestone and we give thanks to the One above and to all of you who walk beside us with this little (well getting big) miracle 
The last 2 months have been a challenge for us as SEbastien has gotten sick with a cold in Oktober and a nasty cough continued beyond many weeks and then I got sick and wasn’t able to keep up with things and then David got sick too and so we all were sick and as we thought things were getting better Sebastien got a second nasty cold and felt pretty sick and stayed at home from school for over a week and this was just in the midts of him getting a CT scan to still investigate why he has sometimes still blood in his stool. The Ct scan showed good results and and we are really happy and so thankfull but we still don’t know why he has some blood in his stool at times, it could be just a silly ulcer but it would be great if we could know for sure. So we continue praying that this is just going to resolve itself and Sebastien will be all fine. For the last 3 months we also had ongoing issues with the Dialysis treatment as Sebastien doesn’t use Heperin ( this is an agent to keep his blood from clotting during the treatment in the tubing) by SEbastien not using this agent he would leave clots of blood in the tubing behind every session he would go to which would leave him with dropping his hemoglobin every session and at times even loosing the circuit ( this is the tubing that is attached to the Dialysis machine and about 50 cc of SEbatien’s blood is outside of his body during the treatment running throw the tubings and the filter to filter his blood at a very hight speed) well this can clot and SEbastien will loose all this blood and this has happened for the last 3 months nearly every 2 weeks and resulting in Sebastien needing a blood transfusion to replace the loose of his blood and the team is working hard now on challenging SEbastien with Heperin and avoiding this issue and the need of multiple blood transfusions. This also reflects that SEbastien got sick with 2 colds and due to his low blood it was harder for him to fight his colds.
Despite us all being sick and barley able to keep up with daily things my dear husband took care of SEbastien, took care of me, went to work, came home, cooked for us for many weeks and cleaned and all with his beautiful love he has for us and after a few weeks he got sick and we were so fortunate that Dom from Winnipeg came and spent some time with us and we want to thank him for cooking for us, cleaning, playing with Sebastien, brought him to the hospital as David and Me didn’t feel well and we are so grateful for your help Dom as we couldn’t have done it without you.
A big thanks also goes to all the people that prayed and thought of Sebastien during his CT scan and also prayed for David and Me as this was my first time not able to be with SEbastien as I wasn’t well enough to go with him and be there for him. Thanks to you all.
Sebastien is doing better and started school again and he celebrated St. Nikolaus Sunday and is getting ready for a Christmas Pagent play where he is playing Angel Gabriel – we will update shortly with pictures as my strenghts allows
We finally received the results from the scope and they are good and they couldn’t find anything concerning. So that is really good but on the other hand Sebastien still has some blood at times in his stool and we are praying really hard that this is going away and Sebastien stays healthy and strong. We challenged the medical Team to still investigate more as there is a part of the bowel that they can’t reach with the scope and we have to be so proactive and make sure we are on top of things as he is still showing blood at times in his stool and maybe its just a silly ulcer and that could explain then blood in his stool. But to really make sure Sebastien will need another CT scan ( Pet CT Scan – they use radioactive dye in this test ) to look at the entire bowel and this will give everyone a piece of mind and more info to exclude other things. So here we go again in a few weeks from now for a CT scan, Bone Marrow Aspiration and a MRI ( this has been just approved, we waited a year for the government to approve it, as Sebastien needs to look at the Iron in his body stored from multiple blood transfusion) but Sebastien is just playing away not even bothered by any investigations, enjoying his school so much and making new friends at school and just being able for the first time to be a child at school just like any other child. It is so nice to see him so happy and fulfilled and overflowing with this glow of Happiness every time I pick him up from school. This is what it is all about……Sebastien is a living proof of being full of LIFE
Past Tuesday Sebastien had to go for an Upper and Lower Endoscopy to take some Biopsies from his stomach as well as from his small bowel and from his large bowel to investigate why Sebastien still sometimes has blood in his stool from time to time which drops his hemoglobin at times and ensuring that there is no ulcers or other causes for his blood in his stool. Sebastien was on steroids just a few months ago and the side effect of them is getting ulcers which can bleed. So here we went again to the OR and as usually I send out a message to keep Sebastien in your prayers and that angel may watch over him, thanks again for all your prayers, angel truly watched over him as Sebastien came up the same morning of his procedure with a very bad and deep cough and the worry if they intubate him to make it worse and possible infection in his lungs…. oh it was a stressful day…. making decisions in the best interest for Sebastien with the help of praying to my and Sebastien’s guardian angel. Well the decision was made to go ahead and take Sebastien despite his deep cough and accommodating my motherly concern to keep the O.R. room warmer and by all means not to intubate him was made possible by putting an airway tube into Sebastien’s mouth and not into his lungs…. oh what a relief… The day before we had played with all his little friends, Dora, Elmo, Cookie Monster, Franklin etc. just to name a few how it would be going into the OR and making him with this Role Play familiar to what to expect and to encourage him to ask questions as it is very scary for Sebastien to go to the O.R. leaving Papa and Mamma behind. So we played over and over again and after a few hours playing he finally fell asleep in his bed. The day of the procedure we also played with our Child Life Specialist and Myself just one hour before the procedure the same Roleplay with his plush friends over and over again. Then it was time to go to the OR and I was lucky to be able to go to the OR with him all dressed up in a white suit. As soon as the door to the OR opened he started getting nervous and clinged onto me saying he is scared. I told him its ok we are just coming to take pictures and we will sit on the table and get some sleepy medicine….. he looked at me sitting all calm and peaceful on the table ….. “Mama ,will you wait for me in the waiting room?” …. I said ” Of course Sebastien I will wait there ” …… “Mama ,will I get Sleepy Medicine?” …. I said “Yes Sebastien Cookie Monster will get some and also you will get some that you can sleep and have sweet dreams?” ….. “Mama, will I get some Bobo medicine from the nurse?” … I said ” If you need any bobo medicine you let the nurse know” ….. “Mama, will you come back to see me when I wake up?” …… I said ” Of course I will come back as soon as you wake up just ask the nurse to bring Mama into your room!”…… “Mama, I love you!”….. “I love you very much too Honey!”………. I kissed him and blessed him as they pushed in the sleepy medicine and said …”Sweet dreams Sebastien and I love you “…… Sebastien said ” I will love you Mama” holding on to his picture of David and Me and to his medal and his Cookie Monster …… it was such a touching moment …. a milestone reached by Sebastien ……. to overcome his fears and to trust……. I cried when I was outside his OR room, relieved seeing him so peaceful challenge his procedure…… ( I love angels and took this picture of the sleeping angel that I brought home from Austria during my visit with my family, it reminded me how peaceful Sebastien was in the OR and I am sure Angels where surrounding him to be with him )
…. how time flies and Sebastien is now off to school, the picture shows him getting ready in the morning for school and he always carries his little pump ( black backpack) with him which is his feeding pump. He loves school and he really enjoys the company of the other childern, learning new things every day, going to gym class, story time, songs etc…… He has a wonderful nurse at his side at school as well as a Teachers Aid that supports Sebastien in the class. Monday, Wednesday and Friday I pick him up after lunch and bring him to Dialysis where he again has school for 1 hour with a one on one teacher – he always looks forward to that time.
The school has been very supportive helping us by educating the students about Sebastien’s fragile health and I have been going from class to class and held presentations about proper handwashing, covering your cough and sneeze in the bend of your elbow as well as infection prevention and especially teaching the kids about not to come to school with symptoms of cough, sneezing, fever etc…. also did some H1N1 education and what the kids as well as parents can contribute to protect themselves. The kids are awesome and take all this information very serious to also protect Sebastien. Also a letter was send home with the kids for the parents about Sebastien’s fragile health and David and Myself did a presentation to all the parents at the Curriculum night about Sebastien and prevention of Infection, H1n1 and washing of Hands etc…. We made the whole crowed cry, well they started crying already with the first picture of our presentation of our slide show, it showed Sebastien in Intensive Care Unit, (you could only see his hand) with his hand tied down and multiple lines attached and holding his rosary in his hands – that picture made them cry already and as the second picture came up showing Sebastien held by his dear and loving Grandma in her arms showing Sebastien attached to millions of different lines and tubes, but not even millions of tubes stopped Grandma to pick him up ( it actually took 10 people to lift SEbastien safely into Grandmas arms and ensuring that no tube would be pulled, it has been more then a few weeks we weren’t able to hold Sebastien and you do anything to give Sebastien this Love and feel your son close) and carress him with her motherly LOVE…… well the Parents at school where so touched and even more tears run down there cheeks and many came up to us after our presentation and thanked us for sharing our story of LOVE
This is Sebastien’s 3rd year transplant celebration as well as GIFT OF LIFE CELEBRATION with his little friends dressed up as pirates ……. what a wonderful afternoon Sebastien had surounded by the people that love, pray and support him soooooooo much….. it is actually the first CELEBRATION that Sebastien actually felt able to be a child and enjoyed playing with his little Pirate friends and the wonderful people that came out to show their love to Sebastien and his special GIFT OF LIFE that he had received 3 years ago and also remembering the family that blessed SEbastien with that GIFT ……
An afternoon filled with Treasure hunt, Hula H00p dancing, making Pirate hats , cake, dancing in a big Pirate line ….just something so simple but so much apprecciated by Sebastien as this was his first time ever beeing able to participate and really enjoy himself and be a child……what a blessing from above….. a dream come true for a Mother and a Father to see their child being a child and treasuring every moment of it forever…..
“While we try to teach our children all about life, our children teach us what life is all about .” Angela Schwindt
…. visit of Marc and Dani and car for Sebastien
Published August 27, 2009 Written by Jasmina Leave a Comment
……. after David’s trip to Iowa to attend his brothers Dominiques wedding to his lovely wife Nicole it was time for me to challenge the trip to Winnipeg to pick up our car as Sebastien will start school in September in a french speaking school here in Toronto and it is nearly impossible to get there without having a car…. so the hard decision was made to bring down our car as Sebastien will go in the morning to school and then around 1 he will leave to go to his dialyisis sessions and starts dialysis at 2 p.m. and and we will be coming home around 7 p.m if things go well ……. so not to burn out we needed the car to be able to get in time to dialysis as well as SEbastien is to little and fragile to go on the schoolbus and starting Septemeber 8 I will turn into the personal Taxi driver of Sebastien providing him with royal and loving driving care to school – making meals for supper in the 3 hours that I have not Sebastien with me as well as cleaning and organizing the week – driving him from school home – walking with him to the hospital – dialyisis – coming home and having supper and starting the routine all over again with some love and laughter to follow…… so off I was to Winnipeg, David just comming home from his trip to the wedding in Iowa ,and as nervouse as I was leaving my dear little SEbastien as I am always at his side soooo me crying but knowing that someone had to get that car….. well it was lovely after I got over my worries of leaving Sebastien, my wonderful Motherinlaw and Fatherinlaw with my Brotherinlaw Normand welcomed me at the airport with open arms and only having 3 days in Winnipeg I got to see at least a few people, our hooooooooooooooouse where I started crying when I saw our stuff in our house that reminded me so much of our little family living there….. sniff…. can’t wait to come home soon …., a beautiful gift beeing able to be a godmother for sweet Marie-Helen (Jacinta’s and Christian’s little daughter – Godparents as well as specialists in Sebastien’s blog), a funeral that I attended and a lovely time with some friends and family and personal time with them as well as fun preparing for a baby shower that I would have loved so much to stay and just the fact of being home and smelling the wonderful Winnipeg air …… I miss it…… as well as all our lovely friends and Family and we are working hard on coming home and getting Sebastien better and able to stay in Winnipeg that we can be all together living in our home again……
……. Me as an Austrian girl, trying to do things on my own and living up to the challenge thought I could manage to bring down the car by myself driving from Winnipeg to Toronto and well now that I look back that we acualy drove that stretch I wouldn’t recommend going by yourself as a women especially…. I was so glad that Dani and Marc, two friends of ours offered to come with me to take turns driving from Winnipeg to Toronto …… it took us 3 days going through Thunderbay, then nooooooooooothing for a long time to Sudbury and then to Toronto…… after 4 hours behind the wheel my foot was hurting as well as my vision was weakend and my eyes started twitching…… well it would have taken me a lot more days on my own as well as way more coffee to drive all the way to Toronto…..and thanks to Dani and Marc we were able to take turns driving and making it safe . Sebastien also did really well when I was gone and once he asked DAvid …: Papa where is Mama?” so David explained : “Mama went to get the car that you can go to school with it ” Sebastien looking all happy replied : ‘ I caaaaaaaaaaan’t wait for the car !” So seeee he didn’t miss me to much he had a lot of fun with David despite David going to work and him staying with Nurses and Respite people he did really well………. sooooo now Sebastien’s school limo is in Toronto …
Sebastien also had a lot of fun with his 2 visitors Dani and Marc and got to know them really fast by constructing train tracks, race car tracks, puppet shows, as well as playing hockey, socker and basketball…… just laughed so much with them…….thanks again to Marc and Dani for helping bringing the car down and the time you took to come down to visit us…..
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