Daily/Weekly Thoughts

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.

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.

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!

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!

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!

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!