“Scars, fitting in, just wanting to be a boy…..”

A few weeks ago, as I was helping him get ready for bed, helping him with taking out new clothes for the next school day, tucking him into his bed sheets and as usually saying his good night prayers with him I asked him what he would like to pray for. He  said: ” Mama,  can I talk to you about something?”

“Sure ! ” I said.

“Mama how come I have all those red scars on my tummy,  and I don’t have a belly button? You know I really want a belly button and I don’t like the way my tummy looks!”

Me and my husband  knew that one day this will  come up and you can never  be prepared for it, as it is such a sensitive topic and so important to the child that asked this big question.  I took a  deep breath and thought  in my head, I just be honest with him and tell him a bit more why he has all those scars on his tummy, knowing how important it is as you grow up and how much more self-aware you get as you get older about things like that.

” Sebastien, when you were a little baby you were very, very sick and  the only way to save your live was to give you new organs  by operating on your tummy that left you with big scars and by cutting your belly button was lost. Without that surgery you would have died –  but this surgery saved your life.”

Sebastien looked at me and said: ” I know Mama, you told me already  but I still want a belly button!”

I replied: ” So Sebastien, what would you do without  your legs ?  Could you walk? ”

Sebastien looked at me and said: “No legs, that would be awful! I couldn’t walk!”

” Sebastien, what would you do without  your arm?”

”  Oh no, that would be even worse !” Sebastien replied

I went on with this with most of his  body parts to make him think  what  part of his body is truly important.

Then I asked him: ” So what would you do without your belly button?”   He paused and said: ” Mama , you are right, I don’t need my belly button, it just  collects lint anyways!”

We both laughed and   he went to bed with a big smile!

about 2 weeks later……

Just last night again it was my turn to help him to go to bed and we were ready to pray. I asked Sebastien  for who he would like to pray.

Sebastien answered: ” Tonight I want to pray for something really special to  God that I m thankful. I want to pray and thank God that he saved my life and all that red stuff on my tummy (which he means his scars), I m happy I have all that red stuff and I don’t want a belly button, well sometimes, but I m so thankful he saved me so I can be with you all!”

I paused as I thought it was so beautiful what he said and had tears in my eyes: ” That  was very nice of you Sebastien to thank God for all of that, he will be very happy to hear that from you because it comes from your heart!”

He gave me a big hug and kiss and off to sleep he was  smiling as he fell asleep. This was one of the most touching moments for me !

Buzzy – Personal Pain Control

Every time Sebastien has to have blood work or an IV started we go through a big ordeal due to his anxiety, the pain that just simply comes along with being poked by a needle and him being afraid, etc.

Our routine to help Sebastien to cope with all of this usually involves a big team that helps us with different methods  to keep Sebastien calm,  so that the health care professional who draws that blood sample can actually have success and draw blood from Sebastien.  We also use  a Topical Anesthetic (which is also  pricy and adds up to our medical expenses)  which is applied at different spots to numb the area to decrease the pain of the needle. Despite all of theses measurements Sebastien will still end up with tears, anxiety, moving his arm away and us needing to really hold him tight so when the needle is in to draw blood, he doesn’t move or pull it out himself, which already happened in the past. Well, and not to forget the parent who is with him at the time praying and hoping it will go smoothly and the anxiety level it causes for the parent that assists before and during this time.  All to say it can be very draining over time and cause a lot of stress.

During our last few admissions with Sebastien at the Children’s Hospital here in Winnipeg we were approached by the team to try out a new device that they are introducing to their routine practice.   I was a bit skeptical about it but agreed with Sebastien’s permission, as I felt he is old enough now to also be part of making that decision if he wanted to be part of this  project to use this device. Let me tell you,  I was amazed by the positive response we got when Sebastien used it for his blood work, his IV start, flu shot, etc….. I wished we had know about  Buzzy long time ago.

The first time we used it, wow did it  blow my mind – no tears, no screaming Sebastien, no moving and fighting the health care professional when they put the needle in,  just pure calmness . It was truly amazing.

Here is a little intro what Buzzy is  and how it works. I will post actual pictures in the next post to come of Sebastien using it during his procedure. We are also looking into purchasing one for Sebastien so he can have access to it  also when he gets admitted i. e.  to Emergency room during after hours,  or other places , as it is not available yet throw out the entire hospital setting as well during after hours when Child Life isn’t available.

You will be amazed – enjoy the video

Buzzy can also be used without the ice pack for IV start and it still works amazingly. There are so many other ways to use it and this is just one of them.

For more info check out this web site :

http://www.buzzy4shots.com/General/buzzy-videos.html

You got it…..

This is such a true video for the amazing Sick Kids hospital in Toronto and their Heroes of little children and the wonderful people that work there. Praying for a wonderful Healthy New Year of 2013! Nothing can say it better than this video.

A great article about “How long is a cold contagious?”

A great article ….

Having a bad cold can make your head feel as heavy as a twenty pound bowling ball. The congestion, stuffiness, dry cough and fatigue make it difficult to concentrate at work and hard to sleep at night. The last thing you want to do is spread your cold to other people at the office. You may be torn as to whether you should call in to work when you have a cold. You know you’re needed but don’t want to spread your bad fortune to others. How long is a cold contagious and when is it safe to go back to work?

Unfortunately, the common cold, which can be caused by a multitude of viruses, is quite contagious which is why it’s so common, particularly during the winter months when people are in closer contact. Although the virus is transmitted quite efficiently through airborne transmission from coughing or sneezing, it can also be transferred to another person by something as simple as handling and touching objects such as money, computer keyboards, and telephones which is why your mother and grandmother constantly reminded you to wash your hands.

Once you’re aware you have a cold, it’s easier to hide away from others to help prevent transmission, but the reality is a cold is contagious for at least a day before you come down with the symptoms. During that time you may be transmitting the cold virus to all of your buddies and co-workers even when you’re feeling fine. Once you come down with the symptoms, a cold is contagious until the last of your symptoms go away. Many people are under the false assumption that a cold isn’t contagious unless you have a fever which is untrue.

When is a cold most contagious? The most contagious period for a cold virus is when it first enters your body and starts to replicate. At this point, your immune system has had little opportunity to intervene and the virus is free to reproduce itself and spread its special form of misery. This period lasts three to four days and is the time when you usually feel the worst. Once your immune system kicks in, viral levels start to drop and you are still contagious until the last of your symptoms go away.

If you’re considering calling in to work, it’s a good idea. If you’re still sniffling and coughing at the end of that time period, you are still contagious. If you go to work, it’s important to use a tissue to cover your mouth when you cough or sneeze and avoid contact with others as much as possible. Your employees will thank you for your kind consideration

How long is someone with a cold contagious?

Every year we  come across this question of people asking us when there cold is not contagious no more and I thought it would be a great post to help people to understand how long someone is contagious with a simple cold.  I found this perfect picture to demonstrate how droplets can be spread if someone sneezes. This picture made me really think and understand why it is so important to sneeze into your  elbow.

Due to Sebastien’s transplants we try to avoid Sebastien as much as possible to get any contact with people that are sick with a cold, the flu, etc. and we get asked a lot why we  do that – a simple answer to that is that a lot of people assume that if  Sebastien gets the cold virus, flu etc. wouldn’t he build up an immunity to it and get stronger like any other normal child or adult? – well unfortunately that is not that easy for Sebastien as a patient post transplant.  We give him daily medications to suppress his immune system to not act as your defense to fight viruses like the cold or flu etc.  so by giving him daily his immune suppression drugs we help Sebastien’s immune system to not detect his foreign liver, kidney and small bowel  so his   own body doesn’t fight them and destroy them but at the same time we also tell his body with those special  medication not to fight a cold virus, the flu etc. and that leaves Sebastien fighting a cold even harder as  his  body is not able to do it on his own.

When Sebastien gets sick he needs to see the medical team in the hospital which will then take some blood samples of him and  usually they have to start treating him with major IV antibiotics until those test results come back withing 24 or 48 hours – during this time even if it is a viral infection, which usually wouldn’t be treated with antibiotics, the team needs to keep him on antibiotics until they have confirmed  with the blood work it is a viral infection that he is battling and then they take him of the antibiotics  and keep him monitored at the hospital until he is better again. The medical team puts him on antibiotics in precaution of it possibly being a bacterial infection – but each time they have to do that Sebastien’s body gets more immune to those antibiotics and overexposed – but that is the only way to help Sebastien until we get the blood work back and  it confirms differently.  So all to say it’s not easy as for any other regular person if Sebastien gets sick.

If people ask us when they can visit with Sebastien again  or have him over at their place when they have been sick we usually have a very simple answer.

• All your symptoms have to be gone and add another 2 days after your symptoms are gone.
•  All the members of your household, even if they are not sick are considered contagious , so  we also cant  socialize with them. ( that also includes people that you might have had over at your house or you visited with at their house etc.)
• If you have a cold that rule works really well, but if you have the stomach flu you might feel better and you might not have any symptoms no more, but the virus can live on surfaces for 2 weeks after your symptoms are gone, so your house environment is still considered contagious and that is how it can be transmitted by touching or coming in contact with contaminated surfaces to other people that come and visit you or you bring items from your home to the other person

• A question we get asked a lot : “Is it o.k.  for me to come and visit as I m not sick, but one of my family member in our house  is sick ,so he/she won’t come with me ?”  Well, even though you are not sick you are living with someone that is sick and are considered a carrier – so a visit wouldn’t  be a good idea.

A lot of people feel bad if we have to cancel gatherings, meetings, parties, visits, etc. but we tell them that this is just o.k. and we have learned to accept that we have to reschedule a lot of times knowing that one day it will work out.

Even Sebastien at his young age learned to be at peace and cope with us informing him that events at times have to be postponed due to someone  being sick and the first thing he will tell us is this:

” Papa & Mama, don’t worry, it’s o.k., we will get a chance the next time when they are not sick, I don’t want to get sick,   I rather wait that they are better. ”

I m very proud of Sebastien being able to understand in his own way and  be so positive about it.

Grateful for Life

Sebastien was so exited for his 8th birthday looking forward to celebrate it with his class mates, but as we arrived that morning at school, Sebastien all exited and telling all his friends that it is his birthday with a big smile on his face,  after being in his class for maybe 10 minutes we found out that some friend in his class ended up with the stomach flu and so we packed up Sebastien and went home to avoid him getting all sick with a stomach flu, which would be so hard on him.

Well,  I felt so sad for Sebastien that he couldn’t spent the day at school to celebrate his special day and my heart felt so heavy when it came to tell him at school that we couldn’t stay as the stomach flu has started at his class.  Sebastien looked at me when I told him the news and asked him to come home with me and said: ” Mom, don’t be sad,it’s ok,  I don’t want to get sick, so I have a better plan, I come home with you and we can play all day and I won’t get sick!”

It made  my day how Sebastien looks at Life and how he embraces every situation and makes the best out off  it.

That evening  Sebastien got a surprise visit from his Memere & Pepere and was soooooooo exited to have them over for supper, it made his entire year. He loves them so much.

Thank you all for the wonderful and special birthday wishes and gifts, Sebastien truly loved it.

Happy 8th Birthday Sebastien

There is no doubt in my mind that there is a reason to celebrate today for a very special boy.

Sebastien is 8 years old today and we are so proud of you!

With all our love

Your Mama & Papa xo xo

with your sister Genevieve & Myriam xo xo

 

Sebastien, Move to Winnipeg, Hospital for Infection, Baby sister Myriam etc.

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It has been such a long time since I have been able to update the blog and I m so exited to  finally have found a few minutes to do so.  A lot of things have happened since the last post:  Sebastien recovered nicely over a few months from his ostomy closure, I got better and regained strength during my pregnancy, we moved to Winnipeg into our old home  to accommodate  Sebastien’s needs as well as our growing family( a little bit difficult to fit another baby into our 1 Bed Room Apartment in Toronto 😉 – we were so blessed with wonderful family, friends and strangers that helped to Welcome Sebastien Home by providing some wonderful Renovations to our home so it would be save and a fresh start for  Sebastien and our family .

On August 4th we welcomed our daughter Myriam  and on August 6th Sebastien got admitted to the hospital 😦  for an infection, and so we went Myriam and Me with the help of David from the St. Boniface hospital just being discharged  with our new born baby to the Children  Hospital to be with Sebastien for his treatments and 2 week stay. Myriam , only 3 days old at that time had to learn quickly to adjust to her big brothers hospital routine.
Thanks to family and friends Genevieve was well taken care off as it would have been to much to have her come and stay with Sebastien through his  long admission.

Our lovely friends Jacinta & Christian took such great pictures of our kids and here is Jacinta’s blog where you can see them.

http://juneyjunebug.com/2012/08/the-more-the-merrier-as-it-goes/

Sick Kids Facts

The Happy Busker

 

Another one, there are lots so go on youtube.ca and enter Do the Happy Sick Kids. Enjoy