Daily/Weekly Thoughts

Daily/Weekly Thoughts

Thirty Lumbar Punctures!

Yes, that is right. Thirty. Three Zero. 30!

Does it make a difference - yes it absolutely does! Almost from the first injection when Emmett was only 6 months old and in a worldwide, blind drug trial, we have seen the difference that the drug now called Spinraza makes. Today, June 16, 2023 Emmett is receiving his 30th lumbar puncture.

Emmett loves school and is in the last couple of weeks of Grade Two. He is looking forward to Grade Three in the fall.
Emmett has participated in Hippotherapy for the past two years. His current horse, Pepsi, loves the carrots that Emmett feeds her.
Challenger Baseball joins Emmett with a teammate. They have a lot of fun out on the baseball field.
Power Wheelchair Soccer with Sportability is a sport that Emmett really enjoys.
Heading out fishing on the open water in the canoe is so much fun ... actually Emmett doesn't really enjoy it a whole bunch! LOL
His school had a fun fair with all kinds of activities and displays - including snakes!
It was light rain on the day that we selected to pick Emmett up from school with the bike and weehoo trailer.
And Emmett still loves going camping. We were out at the end of May before wildfires and dry conditions caused campfire bans. Emmett and Theo had a great weekend camping with their parents and all four grandparents. We were very lucky because the mosquitoes were not bad at all (did you know that in the world mosquitoes cause more human deaths than any other animal or insect! No wonder Emmett really, intensely dislikes them.)

Lumbar puncture #30 is probably done by the time that you read this.

Way to go, Emmett! You are one tough cookie!

By the way, Emmett helped make an Apple Cream Pie. It was his idea and it was amazing.


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So Many Things!

The guys' camping trip - and yes it was cold! Dropping eggs off the balcony to see if they could survive the drop! Pop Bottle rockets in the front yard! Launching Eggs into the sky with the Pop Bottle Rockets - in the name of science, of course! Could they survive! This is a story in picture and video.

This is the first no rain at all guys' camping trip that we've had in ages! But it was cold! Good thing we had a furnace at night time and fires when we needed them.

We had a loaner Hippocampe Chair, which is a large wheel multi-terrain manual chair. It was fun and great for long distance trails. We are going to build our own version of an off-road manual chair (the price tag on these units is astronomical!).

Even though it was a weekend and a guys' camping trip, Emmett was still doing a lot of reading! Grade 2 means a lot of work.

Theodore wasn't with us the entire time, but he joined us for lunch the day we went to Rolley Lake Provincial Park and lunch when we left! So did his Mom and Grandma!

Emmett loves everything about camping (except mosquitoes. He HATES mosquitoes!) The aroma of a campfire, BBQ steak and salmon, roasting marshmallows, even a small taste of a toasted marshmallow! All make for a great campout.

We went to the beach with the hippocampe chair on a beautiful spring day. Theo liked going for a little ride!

After the engineers proved that they could drop eggs off of the balcony in specially designed containers safely, the next experiment was to blast them into the sky with the pop bottle rocket! And they survived. In the name of science we then launched eggs without the safety of the engineered safety cells. Not only did the eggs smash - they came within a metre of hitting me on the head!

Finally, a video of some egg launches, a beach run, and a dump truck!


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Happy 8th Birthday

Emmett had one wish for his 8th birthday party - and that was to launch pop bottle rockets with his grade two classmates at his school. So we did. It was a process that may have taken longer than getting his 29th injection of Spinraza via lumbar puncture just a couple of weeks ago on the 16th of March (which went flawlessly, by the way!) Emmett and I discussed how to talk to the class about how to understand about air powered pop bottle rockets and we decided that we would take a class on Tuesday to have a discussion about air pressure, a class on Wednesday to decorated our pop bottles so they looked like rockets, and then on his actual birthday that we would launch the bottles. And Thursday was a picture perfect day - although still a bit chilly. And 22 rocket bottle launches took place with extreme excitement with each launch.

Happy Birthday, Emmett!


Yes, the faces are distorted but that is because they're guests on our blog. This is when we're getting ready for the launch.
We've already discussed safety but Emmett and I took a few moments to discuss the need for safety with air pressure - that we must respect the power of air. Emmett's was the first rocket that we launched. This was his design.
Each rocket that Emmett has built has been different. This one had large stabilizing wings and a 'doughnut' on top to hold parachute man in place. We don't have a picture of parachute man floating down on his parachute, but it did work. We've never launched a plastic person into the air before!
Yes, the launch is pretty spectacular!
You can see the air hose snaking across the ground. That the children are a safe distance away. That we're launching into an open field. The wind did carry a few rockets so that they landed close to us - but a plastic pop bottle isn't going to hurt if it drops onto someone!
In addition to his school birthday fun, Emmett and his family (that were close by) went to Fort Langly, a local historical site, and spent an afternoon exploring and seeing what a fort built in the 1800's would be like. We even got to use a steel and flint!

So that was the past few months. The 29th lumbar puncture with Spinraza, the excitement of turning eight, and in a few days a camping trip. Well, we hope there will be a camping trip. Right now the provincial park we are going to head to is closed because of snow! It will be better weather in a few days, right!



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Fundraising Success ... but a Hospital Stay!

Just a short update to let you know that Emmett is okay and is now back home, but so far hasn't made it to see the Christmas lights at Canuck Place. He returned home from a Christmas celebration at school (where it was "the best day ever along with the Terry Fox Run day!") just over a week and a half ago - and that night he wasn't feeling good. After dealing with his illness for several days at home where he just wasn't improving the way he should have been, his mom and dad took him in to BC Children's hospital. There he was admitted to the ICU where he spent that last four days/three nights and was diagnosed with having both RSV and parainfluenza.  Emmett was bored at the hospital - and that is always a good sign when a sick kid is bored. After all, boredom while being sick is a sign that the illness isn't overwhelming. (Now, Alisha and Josh will likely say that this health challenge has been overwhelming enough and we would agree! So we will argue with Emmett about this later on!). No one would say that either of these illnesses are trivial and to be taken lightly - they are rough on anyone let along both at once. And of course, everyone who has kids will realize that Theodore is also sick. So far he's handling it well - we just hope that Emmett and Theodore don't play pass the cold back and forth!

We hope that both boys quickly regain their health. - we have lots to do to get ready for Christmas! This is an exciting year because Aunt Katie, Uncle Josh, and cousin Elias are coming for a visit! We cannot wait!

Thanks to all of you, $3225 was raised for Canuck Place this fundraiser. This brings the three year total to $9450!


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