February 15, 2024
Lumbar Puncture #32 – a Milestone
Spinraza has had many names. In fact, Spinraza is the commercial or trade name for the drug’s scientific name which is Nusinersen. Prior to that it was known as Ionis-SMNRX and before that ISIS-SMNRX; you can understand why the pharmaceutical company changed it’s name from ISIS to Ionis! The picture above is not from 2024 but much earlier – but we don’t have many pictures of Nusinersin packaging. And obviously none of the procedure.
Emmett had his 32nd and currently last lumbar puncture on February 15, 2024. While he and all of us appreciate everything that Spinraza has done for him and the progress that this drug has accomplished for him – he absolutely detests the lumbar puncture procedure. And while Spinraza was the first approved drug treatment for SMA, there are now other approved drugs. One of these, Evrysdi, is a medication that the patient takes daily via G-Tube or orally. Emmett’s neurosurgeon has been talking extensively with Alisha and Josh about making the change from Spinraza to Evrysdi – this drug, Evrysdi, may target his fine motor skills better!
March 9, 2024
You’re 9 now! Happy Birthday, Emmett!
March 28, 2024
The Aussie’s Are Here! The Aussies Are Here!
April 24, 2024
I don’t have a photo but I’m here to say that, after being humbled by Emmett in back to back chess games, yesterday I beat him. Yes, that is right! An old man beat a 9 year old kid at a board game. The fact that he was lying in a hospital bed shouldn’t be considered a handicap; it should be viewed as allowing him to focus all of his oxygen on brain power. And I still beat him!
And I’m terrified of the next game we play because winning this one was really hard work! I will have to read up on chess!
Emmett was down for a bit with a bad virus, but he’s back up and going strong. The funniest part of this was that the evening he was moved from the ICU to a regular ward, he set off all kinds of alarms. He was, after all, still hooked up to just about every kind of monitor just like he was in the ICU. Staff came running it to his room to find that Emmett was in near perfect health. He was just super excited that his most favoured Vancouver Canucks had just scored a goal! And his excitement was shown on all of the medical monitors.
May 24, 2024
Evrysdi Started Today!
Emmett and Family are at Camp Squeah for a retreat, but we met the courier and got the Evrysdi, put it in the fridge until we were ready to head to the Camp. Strapped this precious drug into the car. Got it to Alisha who then thought she needed a special attachment to connect to Emmett’s G-Tube (remember, Emmett doesn’t swallow. All nutrients and medications that would normally be swallowed must be injected via the G-Tube), but then realized that by removing one piece from the tubing that everything would work perfectly. Emmett is thrilled and absolutely is ecstatic that the lumbar punctures are a thing of the past!
June 26, 2024
Last Week of Grade Three!
June 29, 2024
A ‘We Carry Emmett’ Hike to Lindeman Lake?
Yes, that was the plan. Unfortunately it didn’t work out and instead it was a hike part way around Chilliwack Lake in the ATC. Maybe it can happen another year!
July 2024
The Gleaners and a trip around Area 27! Plus Tickleberry’s Ice Cream!
Josh helps organize a work bee for members of their church at the Gleaners in Oliver, BC. Emmett and Theodore have been going to the Gleaners since they were babies. This year both boys were a bit disappointed as they were not able to join me at Area 27 Race Track, where I spent a day enjoying the track. However, the boys were invited to come to visit the track later in the week. Even better, we were invited to take our track ready accessible mini-van out onto the track just before lunch. We had the entire track all to ourselves. It was fantastic. Thank you Area 27 and Speed Fanatics for making these two boys dreams come true!
August 2024
Theo Turns Three!
We arranged to celebrate Theodore’s 3rd birthday at the race track. You may think that he is wearing a race suit, but that is not the case. It was absolutely pouring rain so Theo is wearing a rain suit that is probably soaked through. We had a great hot dog BBQ and an awesome celebration, even though it was wet. And as we were at the race track, Theo got to see and hear a lot of action on the race track. The rooster tails from the cars was quite impressive.
September 2024
Grade 4 – and the Cross Country Team!
October 10, 2024
Backup Camera
It is quite likely that you’ll have a back up camera in your car, therefore, it should absolutely make sense that Emmett has a back up camera for his chair. Especially in a busy grade four classroom where people are everywhere. We’re always looking for ways to enhance Emmett’s daily experience. The FEISIKE Handlebar Bike Rear View camera – available on Amazon – is one of those things. First up, none of us are affiliated with this company or Amazon. We found it and Emmett will tell you that it works. And it’s relatively inexpensive – well, in the US it’s relatively inexpensive. Amazon Canada it is just over $100.
We’ve tried a couple of different bike mirrors and they were limited in their view plus very challenging to get under tables/desks both at school and home. We broke a bunch.
We were able to mount this near his joystick and so far no issues accessing tables. The camera we mounted on a rear handle. It’s been nearly two weeks of use, including some treks with his school’s cross country team, and it’s working well. Including in the rain! The camera is clear and the monitor is crisp. It even has an IR function that performs well in the dark. The buttons to turn it on/off and make adjustments are nearly impossible for Emmett as they’re on the back of the monitor. The battery life so far is better than the 6 hour span listed, but it typically fails on his way home from school.
Bottom line, Emmett loves it. We will find out if it can stand up to the long term use and abuse of wheeling about. Short term – fantastic.
October 24, 2024
Guy’s Camping Trip – an ongoing tradition!
October 31, 2025
Last year Emmett broke the mold and dressed up as a Hippo. This year … !
November 12, 2024
Emmett wants everyone to know that the Orange Hippos’ Fundraiser for Canuck Place Children’s Hospice starts today and runs through December 15, 2024. The Orange Hippos’ goal is $3,000.00 for 2024 – adding to the $15,675 the Hippos have raised since the inception of our fundraising.
Please visit my.canuckplace.org/orangehippos for more information about this amazing organization and the opportunity to make a donation!
November 18, 2024
Fundraising for Canuck Place; and a Canucks’ Hockey Game
Emmett is very happy to tell you that the Canucks won their hockey game and, thanks to Canuck Place Children’s Hospice, Emmett and his dad were there to cheer every goal. The Orange Hippos’ fundraiser also hit a big milestone! $1000 has been raised already and our campaign has just begun. 33.33% towards the goal of $3000 ( Emmett is doing percentage at school so this is a math lesson too). Thank you for your donations to this worthwhile cause. Emmett has been participating in activities at Canuck Place like music therapy, special events (like the hockey game), and staying at either the Vancouver or the Abbotsford locations for care and respite. Thank you for caring.
November 28, 2024
The Goal has been ACHIEVED! THANK YOU!
Last night we posted some updates on my.canuckplace.org/orangehippos . If you didn’t know that there were updates there, then you need to check it out. You don’t need to make a donation to be an Orange Hippo, you just need to care! Of course, there is a link there that you can make a donation to Canuck Place Children’s Hospice while you’re reading the latest about Emmett. There you’ll find out about Emmett’s latest special project. You’ll read how Emmett has been searching for the ideal special project since last summer. And you’ll seen a pic of the Orange Hippo fundraising thermometer 99.3% filled in. What you won’t see is that with your help Emmett has surpassed his $3000 goal, and it’s now at $3480! for 2024. The five year total now $19155! Obviously, we want to make the five year total $20000!
The Canuck Place Children’s Hospice fundraiser by the Orange Hippos is going until December 15th! Your donations help support care of fragile youngsters, provide grief counselling to families navigating unbelievable challenges, expressive therapy that help families process life – and so much more.
Meanwhile, today Emmett has a math test. Good luck, Emmett.
December 18, 2024
Thank you all for your tremendous support of Emmett and the Orange Hippos – together we’ve raised $5280 which is 176% of our goal for 2024! Emmett has gifted two special projects to two individuals who made donations this year. And he’s absolutely planning on doing this fundraiser again next year! If you still want to make a donation, you absolutely can at my.canuckplace.org/orangehippos and you can find out more about this incredible organization at Canuck Place Children’s Hospice .
Emmett will be gifting two special projects to two donors to the Orange Hippos’ Canuck Place Children’s Hospice fundraiser. We thank you. Canuck Place thanks you. And if you haven’t made a donation yet, we encourage you to consider it. This part of the fundraiser ended on the 15th, but you can donate anytime throughout the year. Monthly donations are also accepted. Visit my.canuckplace.org/orangehippos for details. Will we see $5500 or even $6000 by the year end? We hope so.
A visit with Santa Claus and joining the celebration at the Canuck Place Children’s Hospice in Abbotsford as they turned on their Christmas lights! Chatting with @guillaume brisebois and @chase wouter of the Abbotsford Canucks was a huge highlight. Theo loved the cookies!
