Daily/Weekly Thoughts

Wheeee! August is SMA Awareness Month.

Since August is Spinal Muscular Awareness Month, what better way to bring awareness that a little boy having fun going down hills and winning races. So here is the video "Wheeee!" in which Emmett is out and about in his awesome burnt orange wheelchair. You will want to have the sound on!

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What a Difference Five Years Makes!

Did you think you would see a tube fed little boy enjoying an ice cream cone! Look again, because that is absolutely what is happening. A couple of weeks ago Emmett said what we know many kids say to their parents. "Let's go to McDonalds!"

Now, apart from the fact that it is a pandemic so the Willms' family rarely go out to restaurants - and during a pandemic even take out is a rare treat. Apart from the fact that they rarely go to McDonalds - it's probably been a year since they were there last. Apart from the fact that he cannot eat a hamburger or fries or that his mom and dad will never let him play in the unsanitized playroom - even if there wasn't a pandemic. Emmett knows about McDonalds and he wanted to go. He loves ice cream!

This picture says it all! Emmett is sitting up in his car seat, holding onto his ice cream cone, and eating it. Yes, he is eating it and he can swallow it too. He loves ice cream (strawberry ice cream is the best!). **In case you're wondering, Emmett takes a few licks and then he is full! **

Five years ago today Emmett was diagnosed with Spinal Muscular Atrophy Type 1. This disease removes the ability of the brain to communicate with muscles. And not just large and fine motor muscles - but the ability to swallow and even breathe. It is a devastating disease. In the fall of 2015 Emmett started on an experimental drug. This drug called Spinraza is injected by lumbar puncture into his spinal column every four months. The result is the little boy that you see holding up his own head, holding onto his own ice cream cone, and licking and enjoying his own ice cream cone.

Then there was the morning when I was at their house running an errand. Emmett was doing his leg exercises and shouted, "Grandpa, look at me!" so of course, I did. Even though I already was. And I saw him doing his exercises which was fantastic. But he had to tell me that he had his AFO's on. I didn't notice that. Emmett doing a workout with his AFO's on is like you or I going for a walk with 10 kg weights on our ankles. This little boy is so strong! Who knows what is next.

We are so proud of Emmett. We are so in awe of this little boy. He fills our hearts to overflowing!

Emmett didn't get his fifth birthday cake from Grandma Rhonda last March - but she's outdone herself with the best hippo cake the world has ever seen! Emmett loved it!

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๐Ÿ’›

Zoomie

Zoomie!

This blog post was inspired by Emmett and also by the book Zoom - written by Robert Munsch and illustrated by Michael Martchenko.

ZOOMIE!
My first trip was coming home from the hospital in a car seat. I was not a happy camper until the car started moving; this started my love of movement!

 

Walking with family was great - but it was so much better when Daddy went as fast as Superman! I wonder why Daddy doesn't go that fast anymore!
Visiting BC Children's Hospital for tests was really not much fun; but going running with Daddy outside in the leaves was tremendous!
It is quite possible that my love of orange was inspired by Marco and the B.C. Lions! They are very fast! 
Car seats - they don't move at all! Waiting to be carried is so frustrating.
Boys just want to move fast! Is anyone listening?
So grandpa showed up with a Jolly Jumper. Everyone said that this wouldn't work because Emmett couldn't hold up his head - but grandpa had an idea for that too!

 

This Jolly Jumper was the best ever! I got to go very fast - but then I outgrew it!
Then swimming! So much movement and flexibility while floating in water!
I have a great support team around me. My first occupational therapist had some university and college students who wanted to help Emmett out. They designed a cart that I could control by pushing two buttons. It was cool and while it was limited in what it could do, it inspired me to start looking for better wheels.
Seeing me operate the cart opened everyone's eyes. When I was 15 months old I had the chance to test out a power chair at an accessibility clinic. You should have seen me Zoom around! You should have seen how sad I was when the chair got left behind!
All of the grandparents got a cool swing for me to enjoy. I couldn't say faster yet, but when the speed increased the smile on my face got bigger. It was the most fun swinging when Mommy was in the house and it was only one of my Grandpa's or my Daddy outside. For some reason, they were able to push better when Mommy wasn't looking.
Going back to the car seat, when I was not even a year old they took away my car seat and gave me this car bed. I was not able to look out the car windows for months and months and months. ( ** It just wasn't safe for him to sit up - time for a special car bed. He used it until his feet were over the end - and at that point the risk of aspirating saliva had reduced and it was safe to sit up again.)
When I was older and stronger, I was able to sit in a car seat again. Looking out the windows again was fantastic! Faster, Daddy! Faster! DON'T CRASH!
Like everyone else that I know, turning 16 was the best time of my life. I got my very own (loaner) power wheelchair. I loved it and did circle after circle after cirle. Once or twice the hedge jumped in front of me and I needed assistance getting out. ( ** It is quite possible that the car and the van and the house walls and doors have a few marks from Emmett and his power chair!)
Shortly after I got the power chair, mommy and daddy got a wheelchair accessible van!
I cannot stay in my power chair all day long. So I get to use a standing frame. It has wheels but it doesn't really move; but it does allow stand to stand and participate in activities that require being upright.
Of course, I've had a stroller from the beginning! Everyone needs a stroller.
I still use my stroller once in a while - it's an awesome one that is specially designed.
Look closely and you'll see that this is a 6 wheel powerchair. I outgrew my first loaner chair and got a used, blue loaner that has six wheels. My baby power chair would get stuck very easily. This chair I have to work really hard to get stuck. And when I do, Mommy and Daddy are so impressed and proud! I can tell.
This new chair had great batteries that were ideal for even longer excursions!
Power chairs and the rain don't mix well, but I have to go outside and play. This was one of the first things we tried - I didn't really like it!
Watching baseball is always fun!
As I got older and have had more injections of spinraza - I call it the 'POKE" - my arm and core strength has improved. Not only could I reach and grab for my toys, but it was time for a new chair. A homemade mega-seat chair. This is basically a mega-seat bolted to a cutting board that has bicycle wheels bolted to it! ( ** If you know someone who needs a chair like this, contact Bella's Bumbas or make your own.)
When I was two or three, I loved helping Mommy and Daddy. They would put the leaves into a pile and I would drive through it and spread it all over the lawn for them. When I was four and all grown up, sometimes I help put the leaves into piles. Then I would drive through them and spread them all over again.
Sometimes I cannot move very far because I'm all hooked up. But usually I can go almost anywhere. I take my suction machine and my food pump with me!
When I was three I got to go for a bus ride on my birthday. It was so much fun. I learned that it was hard to hold my head up in the bus!
Every set of wheels that I have has a different purpose. For example, this chair is awesome for building marble works mazes.

I have been Woody the Cowboy at almost every Hallowe'en in my life. Now that I'm five, I want to be Woody the Cowboy again. When I make my chair go fast, it's like I'm Woody the Cowboy riding on Bullseye the horse! The best ever!
Going for toboggan rides is so much fun!
โ€‹โ€‹โ€‹โ€‹โ€‹
I go around and around and around on my front lawn. Sometimes all you will see is my tracks!
When I was four the Abbotsford Fire Department came and helped me celebrate my birthday. Those were awesome wheels.
Not everything that goes fast has wheels. I love going out in the canoe. I always bring my Mommy and my Daddy along. They'd miss me if I went by myself.
You don't see him, but Santa Claus was on this plane! He flew me and a bunch of other kids from Canuck Place to the North Pole and back. My friend T-T lives at the North Pole.
Grandpa! Get this for me!
I don't have a McLaren, but I do have an awesome three wheeler. I got it second hand and I love using it. Especially going down hills. Grandpa can go fast down hills but he is very slow going up hills!
I love exploring - this was at the top of the Sea to Sky Gondola ride.
Usually I haul my stuffies around in the wagon; but when we're camping then I help haul everything we need to the beach. Sometimes I get stuck at the beach. Grandpa has ideas about putting bigger, knobby tires on my chair so that I can go further without getting stuck. Everyone else all says, "FRANK, NO!".
Last winter I got to go skating. I was pretty good - but Fin and the Canuck's players were a bit better than me. My chair needed studded tires. Grandpa could do it, but everyone else says, "FRANK, NO!".
When I was five I was Abbotsford Police Chief for a day. I got to sit in the police cruiser with Constable Kern. I was a great police chief - but the uniform was not very comfortable. When I was finished my career as police chief, I took my uniform off and never wore it again. Right after I turned five, the 'SICK' happened to all kinds of people but not to me. Mommy and Daddy talk about keeping me in a social distancing bubble. It's really tough. I don't get to see Grandma Rhonda and Grandpa Roger like I used to. Or Ubba and Auntie Alesha. I wish the 'sick' would go away.
With my 'We Carry Kevan" back pack I can go anywhere. When Daddy or Mommy are taking me hiking, I say go Up or go Down. That way or this way. It is so much fun. I get to go places that none of my wheelchairs could every go! I haven't seen Sasquatch yet, but we often find Eeyore's house! Eeyore has never been at home.
A long time ago I was asked what colour I wanted my new power chair to be - and I said orange. I didn't think it would ever arrive, but it did. Two weeks ago my awesome new orange wheelchair arrived. It has more speeds. It has a new computer. I get to keep my joystick and my seat was moved from my blue powerchair to my new orange powerchair. Did I tell you that it is orange! It is the best. When we go for walks now, I race! And I win!
In Zoom when the car won't start, Lauretta takes her brother to the hospital with her wheelchair. I can take people around the block on my new orange powerchair!
โ€‹โ€‹โ€‹โ€‹โ€‹โ€‹

 

 

I am so happy with my new power chair. It is awesome and very fast and the best thing of all is that it is orange.

Thank you to everyone on Emmett's medical team who helped make this happen. Thanks to the BC Government for funding the chair, and for the support from the Shriners in funding important extras required to make the chair more functional.

August is SMA awareness month. Emmett was diagnosed with Spinal Muscular Atrophy, Type 1 in August 2015. This disease is the #1 genetic cause of death of infants. By the fall of 2015, Emmett could not be upright for any length of time as he would choke on his own saliva (this is why he still has a suction machine that is always within reach). That fall Emmett also started receiving the drug Spinraza, which has opened new pathways for messages to get to his muscles. You can see the progression throughout these photos. Thank you for following our blog and learning more about Spinal Muscular Atrophy. Learn more at Cure SMA Canada and Cure SMA.

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This was a great article! Love how happy he is and how well he is doing.

It's Spinraza Time ... but first came Camping Time!

July 9th Update: Emmett is back home. The procedure went well. It is a tough day with a lot of anxious moments - because Emmett knows everything there is to know about lumbar punctures. This was his 18th lumbar puncture - they'll be happening every four months for life, unless a new method or a new drug is discovered. Emmett wants you to know that he does like going to sleep when this happens.

Every four months Emmett receives a lumbar puncture where a tiny amount of spinal fluid is removed and a tiny amount of Spinraza is injected. This is the drug that has reinvigorated the pathways in his spinal column so that his brain can talk to his muscles. So that messages like, "Hey, swallow now!" and "Emmett, hold your head up!" or "Reach out and turn the page of that book!" get through. And Emmett does it. It is a miracle drug - a miracle that requires a huge amount of work. Recently on Canadian news there have been reports about kids' parents seeking funding for a gene therapy treatment. A one time treatment - but it is only for children under the age of two and only in Canada under unique circumstances. Health Canada hasn't approved it yet. Obviously, not something that is available to Emmett. We are, however, so thankful for the drug that is available. The healthcare system that is helping him. And Spinraza is an amazing miracle drug that is absolutely working for Emmett.

So this week, Wednesday July 8th, Emmett will be getting a lumbar puncture and for the first time Emmett will be anethesized prior to the procedure starting. Yes, that does mean that he has been awake and alert for every other lumbar puncture, however, for the last one he was anethesized part way through. You can appreciate that Emmett is quite looking forward to "falling asleep in the middle of the day!". This is something that this five year old simply doesn't do any more.

Four months is not a long time, but four months ago when Emmett had his last lumbar puncture the world was a different place. There was a virus overseas but nobody on this side of the ocean was really in a panic, it was just a concerning situation. Emmett was Abbotsford's Police Chief for a day. Then in the intervening time everyone was suddenly welcomed into a version of Emmett's world. Sanitize! Wash your hands! Social Distancing! Don't go to the grocery store! Stay away from anyone who has a cough! On and on it goes - a new daily plan for everyone. Schools closed. Work places closed. Everyone's life became a closer version of what Emmett has been living since he was six months old. There have been changes for Emmett too. Tough changes.

His family bubble was instantly closed up. Family members who were still working were not able to be inside his social bubble. The rare visits meant being on opposite sides of the yard. Video conferencing became the main stay of story time and more. Physiotherapy via video conferences? Yup. Speech Therapy - hmm, curiously Emmett doesn't hear from them much. Occupational therapy - absolutely. In fact, there have been days when Emmett has been booked for 2 and 3 video conferencing meetings. So incredible. Pam and I have stayed in that family bubble - we're not working outside of the home. We're not going into grocery stores. We are extreme social distancers - if that is even a word.

Yet it is the start of summer, so when BC opened their provincial park system we logged in and booked a campsite for the five of us. Emmett had already agreed that he was ready for something new. Alice Lake has been a spring go-to place. It has cell phone service. Electricity. And the road ways are paved. It is ideal for camping and it was not even an hour away from BC Children's Hospital. Emmett and his family have camped at Rolley Lake and loved it. We've done day trips to Golden Ears. But this year was going to be a stretch - we booked a few nights at Sasquatch Provincial Park. It is about 10 minutes drive outside of cell access. There is no electricity (don't worry, our RV has been fitted with a small inverter that can power all of Emmett's medical equipment). And it is the furthest that Emmett has been from BC Children's since he was five months old. Emmett and Grandpa were up for it; everyone else was optimistic with a large side of anxiety.

We choose provincial parks for two reasons. First off is that they are large and spacious sites with plenty of room for Emmett and us to roam without bumping into someone at a neighbouring campsite. Second, with a medical note children and their parents get the base campsite rental free. This is a huge bonus for a family that is always challenged by the expenses that sometimes never end as you accommodate someone with medical requirements. The large sites also typically mean that there is a lot of trees, birds, and nature trails to explore. You can believe that the power chair batteries were fully charged and that the WeCarryKevan backpack was ready to go.

Emmett was so excited - just seeing the RV arrive in his driveway brought on a fantastic response. The morning that we we heading out, Emmett played on his own all morning while his mom and dad packed. Emmett is a great little boy but it is very rare that he will spend that amount of time without insisting that someone play with him. Once at Sasquatch Provincial Park Emmett wanted to do it all. He wanted a campfire. S'mores. Roasted marshmallows. Hot Dogs. Swimming time. Fishing. Playing at the beach. Going for a hike. And he did it all and then some.

This camping trip was fantastic. And it will give Emmett great memories to dwell on while he is undergoing procedures that he doesn't enjoy at the hospital. We do have to say that the hospital is still one of Emmett's favourite places. There are so many people who know him there. His friends. There's staying overnight at Canuck Place - another fabulous group of people who go out of their way to support and assist Emmett and his parents. Thank you for supporting Emmett. You can send him a message on FaceBook through his parents - or his grandparents. This lumbar puncture is a tough go - but Emmett is even tougher! Literally, the strongest and toughest boy we know.

And now for some photos:

 

Deer Lake is one of the lakes in Sasquatch Provincial Park. It's a beautiful park. However, Emmett found a pothole with his powerchair and he got stuck! Fortunately, we didn't need to call in a tow truck. 

The WeCarryKevan backpack was certainly put to use - and not just for wide trails. This backpack is made for going deep into the forest (so far that means within metres of the main trail!) which is so much fun for Emmett.

We found Eeyore's House! It is always exciting when we find Eeyore's house. Emmett loves his Winnie the Pooh stuffies - and when Emmett is on a hike he is always keeping his eyes open for Eeyore's house. After a hike there is nothing as relaxing as lounging near a campfire.

While fishing during a canoe ride, Emmett caught his first fish. And after fishing it was refreshing to go for a swim in Hicks Lake - only Josh and Emmett were brave enough for that!

Campfires are so much fun - but finding rocks is even better!

Returning home involved getting cleaned up (we had good weather but there was one rainy day) and then having a swim in the backyard pool. Lots of fun stuff so far this summer. After this next injection of power juice is completed, we're sure that Emmett has plans. Because he always has plans!

 

 

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Guest Comment 4 months ago
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Keep reaching for the ๐ŸŒŸ stars. โค๏ธThe Hudsons. You have an amazing family to support you.
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Such a fun camping trip! I've been thinking how the shifts in social distancing in the whole culture would mimic what Emmett and others with medical concerns deal with every day. Thank you for sharing and lots of prayers and positive thoughts for Emmett as he has a hospital day. the Giesbrechts
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Wow Emmett packed a lot into his camping expedition! Sounds like it is the start of a new tradition ... and making more memories! Will be thinking of the sweet little guy tomorrow โค๏ธ Genevieve Gibson
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Love and prayers from Kevanโ€™s parents๐Ÿ’• (Peter and Diana Chandler)
Frank Ewald 4 months ago
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So great to hear from you all. The Hudsons and Gibson's from Ontario. The Giesbrechts from BC. The Chandler's from Indiana (I think). Thank you so much. For those of you reading, the Chandler's are parents of 2 amazing young adults (they both have SMA) and Kevan, who they mention, is the inspiration and face of the WeCarryKevan backpack!And thanks so much for adding your names to the post. So appreciated.