First Day of Kindergarten
Yes, with us just passing by labour day weekend the first day of school has occurred for students across Canada and the USA. It has been a very surreal start up as everyone is dealing with Covid 19 issues and concerns. Alisha and Josh have obviously been dealing with those very same issues that are obviously complicated by a little one who is medically fragile. This complication is magnified because they were really anticipating the greater social interaction with other kids. Obviously, even in prior years in our imperfect world that would introduce a range of health issues into Emmett's environment and with Covid that seems like a quick black and white 'No' to school participation. And yet over the months that this pandemic has gripped the world there have been talk of drastically limited class sizes, reduced number of school days per week, and obviously greatly enhanced awareness on the part of most individuals of the need to sanitize, stay home if ill, wear masks, social distancing, and wash your hands! However, as the school year got closer and closer it became more obvious that the school system across Canadian provinces was going to proceed without any significant changes. These health and school challenges meant looking for other options.
The network supporting this family is amazing and one of these partners is Canuck Place. The teacher their has met and been working with Emmett in person (while he's there) and virtually though online video conferences. She made several great observations and recommended some distance education programs that other families had accessed. Long story short, Emmett is now enrolled in the Oak and Orca Bioregional School and has started Kindergarten. Distance Learning education - where he will be at home while supported in his education by Oak and Orca.
On Tuesday Emmett was so excited for his first day of school photo shoot. You may not realize this, as Emmett is in a lot of photos, but he does not appreciate posed photos. Candid shots are by far the best. Yet on Tuesday he was ready to pose and get his photo taken. He was also ready to show off his sole front baby tooth. Months ago Emmett lost his bottom front teeth and just last week his first extremely wobbly top front tooth came out. He's very protective of the last very wobbly tooth that is barely hanging in there - which is making tooth brush time quite an ordeal - but that's just another part of growing up.
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!
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!
This blog post was inspired by Emmett and also by the book Zoom - written by Robert Munsch and illustrated by Michael Martchenko.
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.