March 8, 2021
Happy Birthday – Emmett is SIX today!
Birthdays are very special. Emmett’s birthdays are even more so. Last fall when it was obvious that the pandemic was going to have an impact upon our birthday celebration, we were not worried. Because this birthday the big surprise was to be in a big truck! And as Emmett’s grandpa Roger works for Valley Carriers in Abbotsford, we had access to lots of big trucks. Emmett got to go to Valley Carriers’ yard – when everything was closed down – and race around on his power chair and look at all of the heavy equipment. Grandma Rhonda had an amazing cake that was designed as a work area with trucks and heavy equipment. Uncle Ben ran the loader and put topsoil into the dump truck, and then Emmett got to ride in the dump truck (fully secured in his car seat, of course). Then he got to watch the dump truck dump the load onto his driveway. Then he got to work with the dirt (it was more than play and no, we really didn’t get in the way. At least, not too much!) All in all, it was a fabulous 6th birthday!
June 13, 2021
The Cardboard Box Boat
If you’ve been wondering where we’ve been, you can relax. No news has been good news. Emmett has been working diligently in kindergarten in his distance education program (which takes place at home). He loves reading. He’s pretty good at mathematics – especially addition and subtraction. He endures art and crafts. He loves excursions and outdoor/garage projects. The biggest project that we had this spring was building a cardboard box boat. From the beginning Emmett was quite clear that this boat had to be for both of us – that he would not go in it alone. As you can imagine this led to a lengthy search to find the appropriate box. Which was discovered at a fitness store – the right size and very sturdy. Sturdy was needed to hold the weight of both Emmett and I – this little boy is growing like crazy. He’s almost 120 cm/4 feet tall and his weight is getting up there! (and my weight is super way up there!)
The construction of this craft took place initially at AES Auto in Burnaby (I picked the box up at the fitness equipment outlet next door) as I had to cut the box down to fit in our tiny SUV. The rest of the build took place in our garage. Emmett helped by first ensuring that we cleaned up the workspace and then offering suggestions. And holding the duct tape. Emmett was impressed that we used almost an entire roll of duct tape. Since we weren’t building for a competition we added large plastic recycling bags for added waterproofing – and this was likely a wise addition to our build. But that is enough discussion. It’s time for the video!
After you’ve finished this video, maybe you’d like Emmett to read you a story? Get comfortable, this is a long clip!
August 17, 2021
Welcome Theodore Silas Willms
Emmett wants you to meet Theodore Silas Willms, his baby brother, who was born at 3:23 p.m. on August 12, 2021. Theodore weighed 8 pounds 1 ounce and was 20 1/2 inches tall. Most important, Emmett loves his little brother! Here are some Emmettism’s which made everyone wonder just how Emmett was going to react to the arrival of this little one.
Three months ago Emmett said,
“I can hardly wait until the baby is three … then the baby can play with me!”
“All babies do is cry and sleep and poop! Wah! Wah! Wah!”
Emmett has said this over and over and over again.
While on a camping trip,
“The baby will have to sleep in the tent.
It cannot sleep in the RV because it will cry all night and keep me up!
The baby cannot sleep in the RV”.
Of course, the irony here is that unbeknownst to Emmett, he keeps us awake most of the night even on his best sleeping night! Ha ha ha
“When the baby comes home from the hospital, I need my headphones! I don’t want to listen to it crying!”
The progression from I’m not sure about this to headphones off and “Look at me, I’m holding Theodore” happened very fast!
While tucking Emmett in and kissing him good night, after stories and cuddles, Emmett pointedly exclaimed,
“I am the oldest brother but I am going to be first (to bed)? Theo should have an earlier bedtime!”
And so, when Theo was 3 days old, the sibling rivalry began.
“He’s so soft!”
Emmett loves to reach out and touch Theodore’s head! All of the time!
Emmett has already babysat his baby brother, Theodore. While his parents went out of the room, Emmett watched Theodore and reported every movement and sound to his mom and dad! Emmett loves his little brother and, in fact, since the first hour has not used his head phones. He thinks that Theodore is the very best!
Welcome to our family, baby Theodore!
September 16, 2021
Hippo Therapy!
This is the absolute best. Emmett loves Hippos so getting involved in Hippo Therapy is the best thing ever. Of course, the challenge is that most hippopotami are wild animals so it took a lot of time to find a tame animal that would handle the lead. Of course, the hippo loved Emmett but wasn’t too impressed with the support team that was around.
Well, of course that first picture is completely photoshopped and there is really no such thing as a program in which you can ride a hippo in Canada (I added that just in case there is a program for hippo riding somewhere else in the world). But Emmett really is involved in Hippotherapy! For those of you who are confused, Hippo in Greek means ‘horse’ while therapy obviously means care. Emmett is now involved in hippotherapy or equine/horse therapy and he absolutely loves it. A week ago he met his therapy horse, Fiona and got to feed her an apple. Yesterday, after the session, he got to feed Fiona a couple of carrots. In this photo you can actually see the carrot in mid-air on the way to Fiona’s feeding mat. This is because, while Fiona is a kind and gentle old horse, her teeth are still quite massive and Emmett will always use a feeding mat or a bucket to share his treats. Honestly, don’t you think that Fiona is smiling in this picture!
Emmett is getting a huge workout while riding Fiona at Valley Therapeutic Equestrian Associations‘ awesome facilities. And it takes a village to support this program as in addition to the horse being led around the indoor arena (and eventually outside on farm trails); there are trained adult support on both sides plus a physiotherapist. Even though Fiona is a short and fat horse – with a beautiful personality – the volunteer’s arms get exhausted as they are reaching up and supporting Emmett so another volunteer is on hand to spell them off. And then dad or mom will be there too for support and care.
Helmet – ready! Back Grip belt (to aid volunteers in holding Emmett) – check! Huge waist pillow support (for comfort and security) – check! Fiona – triple check! Family photos – absolutely! Emmett had so much fun. At the end of the 30 minute session he was ready to get back in his power chair but five minutes later he was ready to get back on Fiona for another ride.
Emmett also had the opportunity to join a few other boys for an organized but informal game of soccer. It was intense! First up Sportsability BC was absolutely fantastic in making this happen. Second, there was not one crash. This is significant when 4 of the boys had never played a game of powerchair soccer before. And with most powerchairs being in the 20 to 30 thousand dollar range, you can appreciate that the parents were relieved. Not to mention that each chair weighs about 140 kg and is moved by electric motors with significant torque. Yes, this was a very good game.
Emmett has been practicing soccer for a while on his own and the game was simply wonderful. Apart from a short break that the parents required, the soccer game lasted almost three hours.
Emmett has started a new school year and he is excited. His parents and medical team have elected to do distance education again this year and his school, Oak and Orca Bioregional School was happy to welcome us all back for another school year.
Well, probably a couple of nights of uninterrupted sleep! ha ha ha
October 25, 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!
November 21, 2021
The Orange Hippos are Fundraising for CANUCK PLACE!
Who are the Orange Hippos?
Well, Emmett is the Orange Hippo and everyone who supports him is part of his Orange Hippos’ team!
2021 has been a year that western Canada, BC specifically, won’t forget for years to come. Not only the second year of the pandemic with many restrictions, but summer saw an extreme heat wave hit which was followed by extreme forest fires. Then this November an extreme atmospheric river dropped over 150mm and more over our province which led to extreme flooding, mud slides, and the west coast being cut off by land (road and rail) from eastern Canada. There is a lot of turmoil and concern – and there is no exaggeration in the multiple use of the word ‘extreme’.
Emmett is Fundraising for Canuck Place. Who is Canuck Place Children’s Hospice? This organization is there for families when they are overwhelmed by the extreme medical needs that a child in their family is facing. That is how we met Canuck Place. In 2015 Emmett was newly diagnosed with Spinal Muscular Atrophy, Type 1, by specialists at BC Children’s Hospital and we were introduced to Canuck Place. And we’ve continued our involvement with Canuck Place and we appreciate having an opportunity to give back a little bit to them. There are two locations: one in Vancouver just minutes from BC Children’s Hospital and one in Abbotsford.
Emmett welcomes you to join his fundraiser for Canuck Place. On the very first day, Emmett had raised $275. Now after just a few days Emmett is at $700 and very close to his target of $1000. Every dollar donated by November 30th will be tripled by matching donations.
Want to join the Orange Hippos? Well, you’re already an Orange Hippo because you’re reading this. If you’d like to support the many children and families who are supported by Canuck Place Children’s Hospice, you can click here to make a donation: https://my.canuckplace.org/orangehippos
Emmett and I are working on a special project that will be given to one person who makes a donation to Canuck Place. Stay tuned! Emmett has a lot of work ahead of him – in this video Emmett is supervising my work.
November 24, 2021
Canuck Place Goal Met; Let’s Keep Going! (And a bit more of the Special Project is revealed!)
Emmett’s Goal of $1000 has been met and surpassed in the first seven days – the current total is $1375.00. This Canuck Place Fundraiser held by the Orange Hippos is going on to December 10th; do you think that it is possible that we might break through the top of the thermometer! Maybe even exceed last year’s total of $1900! When you donate today, your contribution will support kids and families at Canuck Place. And, if you donate before Nov. 30, your gift will be tripled thanks to Canuck Places’ generous matching sponsors LMS Reinforcing Steel Group and friends, Nicola Wealth and friends and Coromandel Properties.
In our last post we shared some of the woodworking details that Emmett and I have been doing. Today, the next part of the reveal let’s you see some of Emmett’s art – you’ll have to watch the video to see the Special Guest Artist that Emmett invited to help out! (Well, if you keep scrolling you’ll see the special artist too!)
That’s right, Baby Theo was involved too! Baby Theo painted the Star! Unlike Emmett, who doesn’t like getting dirty, Theodore loved getting his hands in the paint! He thought this activity was the best!
December 3, 2021
The BC rainstorms – from Emmett’s Back Yard!
BC has just finished a third ‘Atmospheric River’ in less than 2 weeks – and this is after one of the wettest fall seasons on record. Blog readers will remember that our October camping trip was almost entirely drenched in rain. We didn’t have this rain gauge up and running for the first atmospheric river. The second one that hit was coupled with high winds and that toppled the rain gauge. But we captured the most recent one (for the record, the first was the worst, the second was not good but it was not as bad as the second one. These weather updates focus on this most recent atmospheric river. By the way, atmospheric river is a term coined in the 1990’s although it’s really come to everyones’ attention this year.
Literally a ton of rain falling in a 24 hour period – and this has been happening over and over again – has been what has devastated BC. In Emmett’s words, “Grandpa Roger and Grandma Rhonda live on a mountain that has been turned into an island.”, that is because the roads to their home were literally under more than a metre of water.
Some have asked how we are and that is greatly appreciated. Our homes and families are safe. The Sumas Prairie flooding is about 3 kilometres from us. The elevation in those areas is approximately 1 metre above sea level. Emmett’s family live at elevation levels from 40 to 50 metres above sea level. We also live on relatively level ground thus are not at risk of mud slides – which have been devastating in the mountain areas throughout BC. The trans Canada highway at Abbotsford has been underwater. Mud slides, washed out bridges and roads, and flooding has literally caused the evacuation of complete cities and the complete disruption of all road and rail traffic to the West Coast. For us, we move on relatively normally. But we have friends who have lost everything. BC is under a state of emergency.
We hope that this helps you understand a bit more about the floods in BC – an internet search will provide many more shocking details.
December 18, 2021
Merry Christmas
Thank you for the tremendous support for the Canuck Place Children’s Hospice hosted by the Orange Hippos, AKA Emmett. $3775 was raised and this amount was tripled by corporate donors. The thermometer should have been demolished as the goal was $1000 – but it proved to be very flexible.
Emmett also is sharing his hippotherapy videos with Valley Therapeutic Equestrian Association to present at their Open House. Emmett will continue with Hippotherapy after the holidays. He already has a supply of carrots for his horse, Fiona. (and by his horse, we mean the horse that he rides when he is at a session. Emmett does not have his own horse!)
Emmett has been out at soccer again – and it is great to see how his skill has improved over the fall. We also were able to test out the “new to us” power chair. Emmett gave it two thumbs up. Huge thanks to Sportability BC for making this time and space available!
We hope that you have a very Merry Christmas. Emmett’s special project was gifted to Lynne, who is not only one of the donors to the Canuck Place fundraiser, but she’s also one of the volunteers at hippotherapy.
Merry Christmas and a Happy New Year!
From Emmett, Theodore, and all of us!