Daily/Weekly Thoughts

October 2021

Number 22

Edit: Emmett's 22nd lumbar puncture went well. He's at home now and looking forward to a normal day of school ... and rain!

 

It's October and it is time to focus on videos for this blog. So Fasten your seatbelt and click the links. And if you're wondering about the title "Number 22", keep reading. The focus on this issue of our blog is upon the joy that Emmett finds throughout his life. The joy that he shares with everyone around him! He is an amazing six year old and, like many of you, we absolutely find him to be our inspiration. Emmett's videos are of three of his favourite hobbies - Soccer, Horses, and Camping.

Why Number 22?

On October 27 Emmett will be getting his 22nd lumbar puncture and dose of the drug Spinraza. The focus of this drug was to stop the regression that was happening to the recipients' body. At 6 months of age Emmett was limited to slight movements of his right arm and turning his head from left to right. He could not sit up, lift up his head, and was having issues swallowing - to mention a few of the challenges he faced. All because Spinal Muscular Atrophy Type 1 was shutting down the pathways between his brain and his muscles; the result being that his muscles atrophied. Spinraza provides an alternate route - and we have said many times before that not only has it stopped the regression but it has reversed it. It isn't as good as the original because by the time Emmett received this treatment the path was too deteriorated to recoup everything. We have seen some really incredible results in infants who have received the drug at just a few days of age. And now there are two other drugs that are available - which is incredible because when Emmett was diagnosed in 2015 there was not a single treatment available. These videos show Emmett participating in activities that prior to the introduction of Spinraza in 2015 would have been virtually impossible for someone with SMA Type 1. This 6 year old boy works incredibly hard to do what he does. And he has so much fun and such an incredibly optimistic outlook. And we are so blessed with his medical team, his family, and his friends. We are so thankful!

BTW, Emmett knows that he needs the "POKE" but he do not be mislead into thinking that it is all smooth sailing. He intensely dislikes it.  If you're thinking about Emmett and the "POKE", send him a message by responding here or on FaceBook! We will probably read all of the comments for a reading class. And then add up all of the comments for a math lesson. And if you list your location then we'll look up all of the locations on a map!

 

and here's an old horse video that you may enjoy!

Comments

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Guest Comment 1 month ago
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Hi Emmett. This is Uncle Greg from Listowel, Ontario. Aunt Mary and I want you to know that we love ❤️ watching your videos. Soccer, horses, camping even finding Eeyore’s house. Wow. So amazing to see all of the special things that you do and the different (and very cool) places that you go to visit. In a few days is ‘Number 22’. We will be praying for you and thinking of you all day.
Guest Comment 1 month ago
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Dear Great Nephew Emmett! You are a Brave Boy! Number 22 POKE! It HURTS but then it helps. Great Uncle Bob and myself Great Aunt Janice are praying for you! I am your Grandpa's younger sister, like Theo is your younger brother but I am bigger than Theo! God is with you! God will give you the strength and help you be brave and strong. Soccer looks like so much fun with friends. Fiona is a friendly horse to ride and to feed orange carrots. We live in Newcastle, Ontario Canada. Your Grandpa used to race his racing car at Mosport just north of us. Now it is called Canadian Tire Motorsport Park. Grandpa can show you pictures of racing his car at this racetrack. I rode around the racetrack with him in his race car picking up pylons one time. Your Aunt Katie raced at this racecar track too. She was a very good driver and won! Grandpa can show you a newspaper article about her being the best female racecar driver. Hope you have fun looking at the map where we live. Uncle Bob has a big garden but our orange carrots were very small and funny looking. We had big tomatoes called Beefeater! We also had corn, lettuce, beans, peas, squash, onions, potatoes, stinky garlic, raspberries, strawberries, blackberries and rhubarb. We will be thinking of you and praying you have a good day at the hospital. Jesus loves you and will be with you! We love you too! Love
Guest Comment 1 month ago
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Hi Emmet! My name is Erin. Your mom was a good friend to me in university, at CMU. We learned a lot together—your mom is smart and a hard worker, which you probably already know!I love hearing about your journey. You are an amazing kid, Emmet! The videos are fun to watch.Also, congratulations on becoming a big brother!I like praying for you and your family. Keep being brave and kind!
Guest Comment 1 month ago
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Hi Emmett. My name is Sharon and I am a friend of your grandfather Frank, I live in Toronto. I was with your grandfather the very first day that he started teaching! I watched him doing great experiments with his grade 6 students, moving on to other grades in our board, becoming a vice principal, principal, becoming obsessed with Mr. Potato Head, getting older, retiring…and moving away to spend time with You. Wow, that’s a long time.🥳And now you can teach him how to score in wheelchair soccer, how to make a better cardboard boat, how to ride a horse without falling off, and how to be a really good big brother. Boy, he has a lot to learn, good luck!
Guest Comment 1 month ago
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Sweet Emmett your cousins (Pixie, James, Jakob, Toby and Ava wll all be thinking of you and praying for your 'Number 22".
Guest Comment 1 month ago
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Hi Emmett, I met your Grandpa at Lexington Public School in Waterloo, Ontario and that’s where I live. He was a great principal to work with. I really enjoy watching your awesome videos! You’re developing some good soccer skills. I wonder if driving your wheelchair and keeping track of the ball takes a lot of concentration? You’re very lucky to have Fiona to ride! I LOVE horses but I’m very allergic to them. When I’m near horses, or even someone who’s been in a horse barn, my eyes swell up and I have trouble breathing, but I have inhalers to help me feel better. Your camping trip sure was adventuresome but wet🌂🌧. I enjoyed listening to your newscast, featuring the weather forecast! It hardly seems fair that your Dad and Grandpa make you take out the stinky garbage. Maybe if you use “puppy dog eyes” you can convince them that you’re too young for such a smelly job! You’re upcoming Poke doesn’t sound so fun👎🏻. I’ll be sending you good thoughts that it’s not too ouchy and that you get a special toy for being such a brave and amazing boy! Maureen from Waterloo
Guest Comment 1 month ago
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Hi Emmett, I'm a friend of your grandpa, Frank. I live in Waterloo. You are a very active guy. I've been watching these videos and reading many of the Facebook posts about your many activities. I used to go camping when I was younger and I liked it a lot. It looks like you enjoy it too! You're with some pretty nice people. I wasn't very good at riding horses or soccer, but it does look like fun. I look forward to watching more videos of your activities. Thanks for sharing.