Daily/Weekly Thoughts

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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The Orange Hippo's Canuck Place Fundraiser

Pic 1 was taken in 2018 and Pic 2 was at Halloween in 2021. The pic with the hands was from 2015 and the pic with the orange hippo was another from 2018. The picture with Woody the Cowboy and Buzz Lightyear was taken on October 31, 2022. That is Emmett and his little brother, Theodore.

Once again Emmett is holding a fundraiser for Canuck Place. Emmett welcomes you to join his fundraiser to raise money for this incredible organization. Donations made by clicking the link will be eligible for a tax receipt plus every dollar donated by you will be tripled by matching donations. Canuck Place Children's Hospice 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 continues to be involved 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.

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

From an early age, as seen in the first picture above, Emmett has loved the colour orange. His favourite animal has been the hippopotamus. In 2018 there was a fundraising event and Emmett gave our fundraising team the name "Orange Hippos" and it has stuck.

Emmett's Goal for this year is $1000 and with your help he can make that happen. Emmett has raised $6225 over the years for Canuck Place. We think that this is the fourth year for Emmett's Orange Hippo's Canuck Place fundraiser and each year Emmett has gifted one of the participants with a special project. That will happen this year too - and you'll have to wait to see what the special project is! Like almost every 7 year old, Emmett loves surprises!

Click here to make a donation: https://my.canuckplace.org/orangehippos

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#28

 

 

#28

 

 

 

Did you know that Emmett was one of the first individuals in Canada to receive the drug that is now known as Spinraza? You do know that if you've been following along from the beginning of the blog, but if you've just recently started following then this could be news to you. Today, October 19th, Emmett had his 28th "POKE"! That is right, his 28th lumbar puncture. What is a milestone about this lumbar puncture that took place yesterday is that the the drug trial with Biogen, the pharmaceutical company that owns Spinraza, which is also known at nusinersen, has come to a close. For seven years Emmett has been part of this ongoing worldwide study. Before you jump to conclusions, Emmett will continue to receive the drug and require lumbar punctures every four months but from this point on it will be conducted under B.C.'s publicly funded health care system. What a journey it has been since 2015 when Emmett was first admitted to the experimental drug trial where he was 1 of 124 infants worldwide to participate in this blind study, in which only 2/3's of the participants actually got the drug. At that time Spinraza was known as SMNrx and the company that developed it was ISIS pharmaceutical (later renamed Ionis Pharmaceuticals) which has had a long partnership with Biogen. Emmett was fortunate that he was one of the youngsters getting the drug (and not a placebo) starting in October 2015 when he was seven months old.

Every four months he gets this injection of Spinraza which is like an injection of power juice that allows a secondary path to carry his brain's commands to his muscles. You see, Spinal Muscular Atrophy causes an issue with the nervous system and not the muscles themselves. The muscles atrophy because they do not receive messages from the brain.

Spinal Muscular Atrophy Type 1 first made itself evident in Emmett quite early on - as a newborn he was able to kick his legs and move his arms quite well. By three months he had lost the use of his legs. By six months he had lost the use of 95% of his arms. Between five and seven months he began to demonstrate signs that he was losing the ability to swallow. He got a G-Tube to allow tube feeding. His breathing was compromised so he got a Bi-Pap Machine to assist as it supports his breathing in and out (a C-Pap machine only pushes air in, the Bi-Pap is a two way air flow). Spinal Muscular Atrophy affects all muscles - except the heart.

Spinraza was the first drug (there are now more) that was approved to treat Spinal Muscular Atrophy. The intent of the drug was to stop the regression of this devastating genetic disease but in Emmett's case (and many others) it has actually reversed the effects of the disease. And today's procedure went perfectly and Emmett is back home sleeping in his own bed.

During the drug trial the infants were older and had to be a specific weight to be accepted - Emmett fortunately fit all of the requirements. Today, if the disease is caught early enough intervention can begin almost immediately. As of September 30th, 2022 BC has begun newborn screening for SMA along with 26 other treatable conditions. This is fabulous news and we have been advocating for  BC to include this screening test.

You've been asking what Emmett has been up to recently, and the huge step for the Willm's family is that Emmett is attending Grade 2 at his local public school. After Distance Education at home for Kindergarten and Grade 1, last February Emmett announced that he was ready for public school. He loves being at school and, as you can imagine, has picked up all kinds of things. Playing tag with his classmates, reading with his buddies, participating in the Terry Fox Run, getting colds/flu/stomach bugs! It has been chaotic and exciting all at the same time. In addition to EA support while at school, Emmett also has nursing support to accommodate his medical requirements. It sounds like his support team got quite a workout during the Terry Fox Run. Emmett's power chair got a workout too - it required a full service to lube up the wheels, axles, and hubs after the intense used he's put it through this fall.

In early October we had our regular guys (Emmett, daddy, and grandpa) camping trip and thanks to the drought that BC is experiencing we had our first ever rain-free guys camping experience. It was unbelievable. Campfires, BBQs, games, hikes, stories, and also Theodore, mommy, and grandma came up to the lake to have picnics with us at the beginning and end of our excursion.

Emmett is continuing hippotherapy - you'll remember that this is horse therapy - this year and once again Fiona is his trusty steed. Other sessions for Emmett include speech, physio, and occupational therapy.  Emmett has started reading chapter books on his own and his current favourite series is Mercy Watson: Adventures of a Porcine Wonder. He also loves being read to and recent books include Watership Down, Call of the Wild, Hatchett, Lord of the Rings, and Tom Sawyer. This boy loves books.

Life hasn't been perfect. Like any little kid in school Emmett has gotten colds and stomach bugs - it just hits him harder. And he gives it to his little brother and then they trade germs for a while. Unlike his classmates who might cheer when they hear that they have a sick day and miss school, Emmett is very upset about missing any school time. Also, his treasured orange power chair has been in the shop for service for over two months. Of course, the failure happened literally days after the warranty expired and while we are hopeful that it is fixed soon, no timeline has been provided. Fortunately, we have taken the old but reliable power chair that we use for his power chair soccer events so he is still mobile. Also, he has his "Purple Chair", which is his manual wheel chair that Theodore loves and has just figured out how to climb into on his own. The challenge with the purple chair is that Emmett has grown so much in the last six months that he's outgrown it! The chair company has a 'growth kit' for the chair but Emmett has been waiting over 6 months for that to arrive. His hopes were raised in July when they came with parts to expand the chair - but the expansion kit was missing multiple key parts so he's still using his too small purple chair.

Oh, and just before school we got permission to go out onto the race track in my race car - Emmett loves watching me racing and this time he got to actually experience it!

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A Bike Trailer!

Will that be safe! It takes up too much room. That is way too expensive!

Well, yes! A new bike trailer is very expensive but, by searching marketplace over a reasonable timeframe, we found a WeeHoo bike trailer that was available at a fantastic price and, without further consultation, bought it. The fact that further consultation wasn't sought was not the most diplomatic, but the idea had been bandied about (and not enthusiastically accepted!), so when such a great deal came up it demanded immediate action. The awesome thing about the WeeHoo bike trailer is that it is designed for a wide age range of kids. It has pedals like a regular bike - allowing your youngster to assist with pedalling. And it has a very solid connection to the bike that is pulling it. 

As to taking up a lot of room - well, it does. Yet the amazing thing about the WeeHoo Trailer design is that it is

Change: we used 1/4" mild steel
rather than 1/8"! The angles are 
50/55°. Other dimensions are
fairly close.

quite compact as it only has one wheel. This is ideal for riding trails - which we haven't done yet as we've only had it a couple of days - and getting into all kinds of places. The challenge of the WeeHoo is that it is designed with a single wheel. This is a difficulty because Emmett may require some physical assistance and, if we have to stop and act in a hurray, the WeeHoo does not balance on it's own. So we made 'balance' wheels for it. Think of a much stronger version of training wheels. We went to our local Canadian Tire store for 6" steel, ball-bearing lawn mower wheels and axle bolts. Then we went to a local steel store (yes, there are places like this near you!) to buy the metal and they also did the bends for us. This added to the cost factor but absolutely makes riding a lot easier. (Trails may now be a bit more challenging if they're very narrow.) At first Emmett wasn't sure that he liked being tilted while stopped but he quickly got used to that.  Going down hills absolutely adds to the thrill - this first trek we kept the speed well under control but, as we all get used to it, we will probably pick up the pace. Within safe parameters, of course (Mom and grandma's will be reading this - we will be very safe!). Emmett was quite encouraging about me having to haul him back up the hill! Perhaps this is why all spring he has been badgering me about riding my bike and getting exercise. Maybe he knew a bike trailer was in his future? At any rate, this was a relatively small hill and, while it was a bit of a workout, I was honestly expecting worse.

That covers cost and space. And it covered safety too, didn't it? There's always more room for discussions about safety! We have a traffic flag to ensure that we are noticed. We added a rear bike light to attract driver's attention. The WeeHoo comes with two shoulder belts, a chest strap, and a crotch strap to ensure that the rider is securely held into the slightly recumbent seat. The pedals come with velcro toe straps and a flexible heel strap - this is important to keep the riders feet securely on the pedals. We are experimenting with neck support collars as this equipment/exercise does give Emmett's neck quite a workout. Two that we have tried were not ideal because we need to work around incorporating this collar with his bicycle helmet and his back brace. So we will just keep experimenting until we find something that works for him. We also need to get some kind of platform/tray on the trailer (or the bike) that will hold his suction machine. As you know, Emmett doesn't travel anywhere without that key piece of equipment. So the only other safety concern is the main bike rider - and I've received several lectures about safety and I'm sure that I'll receive many more. To be honest, this concern about my judgement is likely justified. I promise now and in public that I will not knowingly take Emmett over any ramps or jumps or any other action that will endanger his safety. In fact, Emmett has already let me know that he would prefer that I not ride over sewer grates - he finds them too bumpy. But seriously, I think that Emmett is in more danger when his one year old brother, Theodore, starts pushing Emmett and his manual wheelchair about the house!

It is now seven years since Emmett was diagnosed with Spinal Muscular Atrophy, Type 1. It is almost seven years that he has been receiving the drug Spinraza. This fall Emmett will be attending public school in grade two and he is very excited about that. We all appreciate you taking the time to read about Emmett's journey and the adventures that he goes on. August is Spinal Muscular Atrophy Awareness month. To celebrate SMA Awareness, Emmett is out for a bike ride!

 

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