Nickolas was a Grandview Ambassador at his school this year!
He got to wear a Grandview shirt and go to all of the classrooms and collect their toonies for Toonie Tuesday. He also got to make an announcement to the whole school.
He didn't want to talk by himself, so Katheryn came and talked with him.
This is their script
Nick: Hi. I'm Nick. Grandview helped me learn to walk with my walker. I wanted to walk like my sister.
Katheryn: Thank you for donating a toonie to Grandview Children's Centre. I am so proud of my brother. The money will make a difference in helping other Grandview Kids.
They sent some black and white pictures home, but the above picture was posted on the school board site.
So we decided to start with his favorite food. Meatloaf!
I tried to get his hands all in the meat. He didn't really like it and wanted to go back to using the spoon. Nick helped with everything (except loading into the oven)
Nick was so proud of himself and ate everything.
He can't wait to do it again!
In 2006 Kyle and I started our life together, bought our house and once we got grass we brought home our first baby.
Samwise, our Sammie was a Bernese Mountain Dog, which met both of our requirements; a big dog and good with children. And Sammie gave us both for almost 10 years. Yesterday, our Sammie left us very suddenly and very peacefully. He went out into the backyard and never came back, and we found him lying in his favorite spot.
Sammie was a gentle giant. He didn't actually realize that he was a big dog. He thought he was a lap dog and would climb up wherever you are.
Sammie loves sitting on your feet. When anyone came to the door he would jump up at the door until they came in. Then he would swing his bum around (taking you out in the knees) so he could sit at your feet and look up at you.
He also had excited pees. And he was always excited to see you when you got home. So as soon as you got home you couldn't touch him (or he'd get excited and pee) you had to put him straight out. And once he came in you could give him all the love!
He did get into a fair amount of trouble. Including eating our wall. Not just once or twice. I think I patched it up 3 or 4 times before I just left it half eaten until he grew out of that stage.
Sammie also was used to the comforts of life. Not only did he get up on the couch, but he also required pillows. When he was starting to get arthritis and had difficulty getting up from the floor, we got him his own dog bed, but he didn't like it and never used it.
Once Katheryn came home Sammie fell in love and became her big furry protector.
And Katheryn loved him. She wanted to be everywhere he was.
Her favorite thing was the climb all over him
And when Nick came along, he just added one more to his fold.
But Rory brought a new bounce to his step and she tried to be as close as Sam would let her be. She is missing her buddy.
The kids are upset, Katheryn as the oldest is understanding death more. And they understand they won't see Sammie again, but we can talk about him and remember him.
We found one of the kids old stuffed toys of Sammie and put his collar on him. We got a name tag printed as well and Katheryn hasn't let the stuffed Sammie go. She has brought it to school and carries it around with her, and even sleeps with him.
Sammie gave us almost 10 years as a loving and loyal dog. He loved his other family dogs. He was a beautiful dog and we have a huge hole in our hearts.
Yearly MRI's are not anything new to us. We usually travel down to Sick Kids every 2 years for a sedated MRI.
I think that Nick has had 4 or 5 MRIs (not including the one in utero). He had one just after he was born, I remember them wheeling him down in his bed. I think he had another one in 2010, but I can't actually find the post for that one, so maybe not? Nick had regular MRIs done in 2011, 2012 and 2014. These are all to look at his brain and spine. And we have been (knock on wood) so far, so good.
All of these MRIs involved sedation.
Because Nick was young, and it is important to stay perfectly still while they take pictures, it is standard to use sedation and have the child go to sleep with general anaesthetic. This makes the MRIs more involved (and riskier, with the risk of general anaesthetic). It also involves some sort of recovery, because general anaesthetic throws your body off.
When we had our last neurosurgery consult and Dr Rutka ordered an MRI, I asked about having an unsedated MRI. I was told they usually start doing this at 6 years old. Nick is 6, so I wanted to try. I think that he will be able to stay still long enough.
If he is not able to stay still, we will have to reschedule the MRI on another day.But I thought it was worth a try to be able to skip the general anaesthesia.
I have had an MRI myself (when I was pregnant with Nick) and so I know what it is like. I remember needing to stay perfectly still. It was loud and there was a speaker for the tech to talk to me. I kept my eyes closed the entire time because I knew that the machine was a couple of inches away from my face. And to keep myself calm and to distract myself I sang (in my head) the entire Act 1 of Phantom of the Opera. The MRI took about an hour, and so did Act 1.
Keeping my own experiences in mind. I wanted to find a way to prepare Nick for the MRI. When they called us with the appointment day and time, 545pm on Feb 4th, I asked about preparation but they didn't really have any suggestions other than to search for youtube videos. (Which I was surprised about, that Sick Kids didn't have their own video like other hospitals).
I am most worried about how Nick will react to the noises. As loud noises bother him anyways.
This video has some examples of some of the noises.
Nick knows another boy, a couple of years older than him, who had an MRI done recently. So he was talking with Nick about what to expect.
I have also been looking online for some resources.
This link: http://www.texaschildrensblog.org/2013/04/preparing-your-child-for-an-mri/ has a child life specialist who talks about the MRI, it is similar to the above video, but I don't find the noise to be as clear.
Some other resources that I found are:
Specific for Brain: http://kidshealth.org/parent/system/medical/mri_brain.html?tracking=P_RelatedArticle
Specific for Spine: http://kidshealth.org/parent/system/medical/mri_lumbar.html?tracking=P_RelatedArticle
While I am discussing MRI. I also want to understand what information we are getting from an MRI. An MRI is considered to be safe, and does not involve any radiation. Instead it uses magnets and radio waves to take pictures that can create a 3D image of the body. It is important to stay still while the pictures are being taken so that it is a clear image.
The MRI of the spine looks at the bones, spinal cord, nerves and disks. The MRI of the brain can ensure that the shunt is working, but also give a clear picture of different structures of the brain.
So we are hoping for a successful non-sedated MRI which will show that everything is stable. My concern (which is always my concern) is that the change in bracing and the weak knees is a sign of tethered cord and that there is something going on inside that we can't see.
Winter started in full force when the kids returned from winter break. There was snow and ice and it was cold. Often Nick will come home and tell me about his recess and who he played with and what they did.
The first week of January he didn't have any stories. He just said he stayed inside.
Trying to ask Nick about why he didn't go out for recess he said he didn't know, and then it was that there was snow, or the gate wasn't plowed.
I spent some time back and forth with his teacher about why he wasn't going outside for recess. I was upset that he might be excluded from normal school activities like recess.
There were a number of different reasons. First is the time of getting him ready to go outside takes longer than the other kids and it cuts into school time. Second is that they are worried about him falling on the ice. Third is that he gets cold easily
After discussing I understand. I don't want him missing classroom time to get ready, on top of his cath time. So he will be going outside with has classmates at lunchtime recess and for the short recesses he will stay inside and get to pick a friend to play with him.
I did say that if they are worried about the ice and his walker, then he can go outside with his wheelchair. As well instead of getting his snow pants on, he could cover himself with a blanket and sit in his wheelchair.
We will see what we end up with. But I want to hear more stories about his friends.
