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 
Archive for October, 2009
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
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