….resutls from Scope

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

going to the OR for Endoscopy

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 )

…of to school a dream come true

…. 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

Ahoy Pirates…..

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

……. 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…..

…… family from Austria

Our Visitors from Austria/Kotschach left my siter Birgit, Lisa, my godmother Elisabeth and then me and Sebastien in the stroller….. David was so nice and took the picture….. xoxoxo

Thanks so much to my family and Sister Birgit and Lisa as well as my cousin Elisbabeth for coming to see us it means the world to me…. thanks David and Normand for communicating with them and for keeping it a suprise and for Carolyn who helped us getting to the Zoo ….

Liebe Birgit und Lisa und Familie und liebe Lisbeth, recht herzlichen Dank fur Euren Besuch hier in Toronto, es war ja solch eine grosse Uberraschung und wir hatten die beste Zeit mit Euch und konnen Euch garnicht sagen wie viel dass uns bedeutet hat….dies war das beste Geschenck auf Erden auch bei uns zu haben, danke fur die vielen schonen Stunden zusammen fur das gute Osterreichische Essen das ihr uns gekocht habt als auch die gute Schokolade mhhhh…… und danke das ihr immer fur uns da seit….. mit vielen Bussis von uns allen und wir hoffen Euch bald wieder zu sehen….. es war ja so schon Sebastien mit Lisa spielen zu sehen…. ahhhh kann es kaum erwarten Euch wieder hier zu haben…… In Liebe Eure Jasmina xoxoxoxoxooxo David und Sebastien xoxooxooxxoox

Lisa and SEbastien – at the Zoo facepainting……

Suprise Visit from Austria……

It was a hectic morning, the sun was shining and it was the 10 th of June, Jasmina’s 30 birthday as well as Sebastien’s orientation morning at his school…. well I was bringing Sebastien to his future school all nervous and sick to my stomach hoping all goes well and trying to race back for 2 o’clock for Sebatien’s dialysis session as it had to be switched to the afternoon for that day to accomodate his orientation at his school…. so everything went just well at school and we raced to diaylisis in Toronto’s lunch hour traffic and finally arrived at dialysis …. finally hooked up to his dialysis tratment Sebastien and me started to do some colouring as well as some crafts and as time went by we both got more and more tired and just dreamed of our bed ahhhhhhhhhhhh…… well around 5 o’clock I really needed a coffee….. sooo of I went to get my coffee and finally back at Sebastien’s site sipping away on some coffee and feeling the effect of the caffein to keep me awake I see a little girl about 5 enter the room with a big bouquet of flowers and a big smile… I looked at her and thought… ohh that is so nice the hospital is sending a little girl with flowers for my birthday…. I said to the little girl – “What beautiful flowers those are …. are they for us? ” well…. the girl just keept on smiling and looking with her big eyes at me….. and all of a sudden she started speaking with her beautiful voice and reciting a poem….. and I looked at her and started crying as she spoke in Austrian and recited a poem for my birthday and I started shaking as I realized looking at her that she is my little niece from Austria, my sisters daughter Lisa and she didn’t even finish the peom for me as I just started crying so much and just picked her up in my arms and wanted to touch her to make sure I am not starting to haluzinate on my first day of turning 30…….. you never know….. well she was real and I just held her soooooo tight and didn’t want to let her go frozen in my movements and trying to find an explanation how she could possibly be here as I havent seen her now since over 5 years and she whispers with her gentle voice in my ears…. “Look Aunty Mina outside the room…..” and as I turned my head to look outside the Dialyisis room, my eyes full of tears looked at my dear Sister Birgit and my Godmother and Cousin Elisabeth and just hugged them and held them tight …… a dream come true seeing my family after such a long time…….. a time where you need your family close  during the long days at the hospital with Sebastien but due to the far distance became a far dream to see them and beeing able to meet Sebastien was a secret wish hidden in my heart…….. as I know how difficult it is for my family to come due to never been on an airplaine and my sister and family attending to my Mother who has had multiple health chanllenges the passt years.

My Cousin and Godmother Elisabeth looked at me and said “Jasmina, Iwanted to celebrate my 50 birthday with you and SEbastien and David and be with you on your side…..” ( She turned 50 on the 13. June.)

Well, and there was David my lovely husband walking in joining us crying of joy that we are finally united and David and his family members keeping it secret to suprise me on my birthday  communicating with my family in Austria to organize their trip here to Toronto thank you David this was the best gift ever to have my family here ….. well Sebastien was just in loooooooooooooooove with them… it was just such a beautiful gift to have them with us….. Sebastien and Lisa playing together and Aunty Birgit and Aunty Lisbeth cooking for us and cleaning for us, spending quality time together…..and so many beautiful hours together, hours to cherrish forever…….

We can’t wait that one Day Sebastien can come with us to Austria to meet my Mom and Dad, his Oma and Opa and his uncle Hubert and be surrounded by their love xoxoxoxoxo we keep on praying for that day to come…..

more pics from Sebastien’s Junior Kindergarten Graduation

This is Sebastien in the middle and on the lef is his teacher Kathy and on his right is his favorite Clown Alibu

This picture was also taken on his Graduation Day and the Clown came to join Sebastien’s special day, the therapeutic Clown comes every Wednesday and visits Sebastien for about 30 minutes and Sebastien just loves playing with him and just be silly and have time to be a child as well as makes his Dialysis session fun as they go on Rocket ship adventures, pretend to do all sort of things and sing songs together and time flies if Sebastien has fun and he always looks forward to seeing Alibu the Clown and to blow bubbels and play with stickers….. it is soooo good for him …….

Sebastien’s Junior Kindergarten Graduation

….. from Junior Kindergarten at the Sick Kids Hospital in Toronto, this was such a wonderful gift to see our son Sebastien achive his first year of schooling and for some families this is just what kids are supposed to do, they are supposed to grow up, be a child and go to school but this is sometimes not the reality for everyone especially if life gives you the road to travel on like we did, the many hospital stays, the hope that was cruched that our son would never walk, never be able to do certain things and it can get so dark in a families life if there is no hope and prayer and support from all of you …… well look at this picture, this is Sebastien with his proud Junior Kindergarten teacher Kathy, who did such an amazing job during Sebastien’s first school year, coming to every dialysis session and teaching him 45 min sessions for the past school year and we are proud to see our dear Sebastien graduate knowing now how to write his name, knows his alphabet, can count to 20, follows instructions, draws beautiful pictures, can speak now in full sentences, speaks French and English and some German, cuts with scissors and many many more things…….. and he loooooooooooooooooooooooooves school…….. he looooooooooooooves to learn and loves opportunities to expand his knowledge…. the teacher did such an amazing job to work with Sebastien’s skills, despite being on dialysis where sometimes Sebastien gets nauseated and has not a lot of energy and all the other therapies that where going on during that time……. soooooooooooo we are sooooooooooooo proud of you Sebastien you worked really hard and we all can learn a lot of you ……….. your Papa and Mama that love you sooooooo much xoxoxoxoxo

 

(Sorry, for the delay in updating you all, our computer had a very bad virus and had to go to the Computerhospital for some time to fix it and so we will update you with some more photos about Sebastien’s Suprise visit from Austria, his hair growing back in, the unbelievable miracle and blessing of Sebastien walking….. my dream come true …… as I was told looooong time ago that Sebastien would never walk the wonderful visit of Memere and Pepere and Uncle Roger for SEbastien 3th year transplant anniversary his Pirate Party and the ultimate….. SEbastien in Lederhosen….. you have to see that one…