If you are wondering what an EMMETTism is, then I'm guessing that you haven't read this blog too often. Allow me to provide a definition. An EMMETTism is a phrase or comment from Emmett which makes us smile - possibly even laugh. Unfortunately we have forgotten several EMMETTism's, but we have a few here to share with you. N.B., EMMETTism must be typed/written with the first six letters capitalized.
There's nothing like freewheeling down a hill. This isn't an EMMETTism - it's just a little boy enjoying life!
Emmett loves having a bath. Not just because he loves being clean, because he is fanatical about being clean, but also because it is great physical exercise. One night, while having a bath, Emmett wanted his hair washed with his mommy’s shampoo rather than his baby shampoo. After the bath he was all excited to see himself in the mirror. When he did, he burst into tears. When finally calmed down the reason for the tears came out. Mommy’s shampoo bottle was orange. Emmett thought his hair would be orange.
Watching TV, videos, or YouTube is not something that Emmett gets to do very often. It is quite a treat, in fact. In early September Emmett had gotten the sniffles - which he probably caught from me - and was feeling a bit under the weather. One afternoon he looked at his mom and told her that he needed a rest on bipap ‘and a little bit of veggie tales’. Alisha couldn't pass up this request for video time.
As we've already indicated, Emmett is a clean fanatic. So much so that if someone else plays with his toys he will ask if they've been sanitized before he will play with them. He's never liked touching sand or doing finger painting - although we've been doing that. It's sort of like Star Trek - You know, the one that goes 'Dirt. The messy stuff on your fingers. These are the adventures of Emmett, his mission, to explore dirt and actually get it on his fingers without crying'. *You have to say that with the music of the Star Trek theme playing in your head. Well, just last week Emmett wasn’t letting Alisha brush his teeth. They had just been at the dentist and he loved it (they were at Allwood Dental, a new clinic with awesome staff and a cool TV setup that moves up over your head so you can watch without interruption), so to get his teeth brushed Alisha told him they were playing pretend. That she was the dentist and he was her patient. Emmett looked at her and said “You a dentist, mommy? Well, where’s your TV????”
Emmett loves Toy Story. It is literally his favourite. He gets to watch the DVD while driving to and from BC's Children's Hospital - which will be happening on October 9 (today) as he is heading in for a bunch of assessments and tests - and he does know the story inside and out. He has miniature Toy Story characters that he loves playing with. At almost any time, he can tell you exactly where in the house his Toy Story tupperware container is so that you can find his toys. In the video the toys are only animated when the 'humans' are not around and that includes the boy Andy that the toys belong to, so when the 'humans' are around they stop and drop. One of Emmett's favourite things is shouting "Andy’s coming"! When Emmett does that, you have to stop, fall over and be still.
A less challenging command from Emmett is that he will shout "Family Hug!" and Josh, Alisha, and Wendell (the cat) have to stop everything and immediately join with Emmett in a giant bear hug.
Of course, there are the longstanding favourites. Carrots. Emmett loves carrots. It will be fantastic when the time comes that Emmett can eat food by mouth versus his tube feedings. We are all, however, quite worried that when he finally tastes carrots that he may be somewhat disappointed! Of course, they will always be orange. His favourite animal is most certainly still the Hippo. And based upon the picture book he knows that Hippos hiccup and giraffe’s laugh. And he still loves orange hippos. We actually found some orange hippos on Amazon and ordered them. They never arrived. After some emails, the seller re-sent the order. And it never arrived. We were quite disappointed but four months later both orders arrived - we now have lots of orange hippos.
While camping this summer we were out for a stroll with Emmett. (I like stroll better than walk. Obviously, Emmett doesn't walk. In his power chair he rolls. And stroll has roll in it - so I think it's fitting and inclusive to say we were out for a stroll). As we went around Emmett observed everything from the bugs to the RVs to the other people out for a stroll. He meanders. He does circles. He is a typical three year old. But as we came up to a small parking lot his irregular path suddenly straightened and he went like an arrow straight towards a beautifully restored classic Dodge muscle car. He stopped right at it and rotated his chair to look at us. Then he exclaimed, "This is me!" The car - a brilliant orange.
As a three and a half year old Emmett obviously has an early bedtime. Couple that age with SMA and that early bedtime is an absolute necessity as he is exhausted at the end of the day. This led to the next EMMETTism which occurred while camping during the fall. All spring and summer Emmett has been going to bed while the sun has still been up high and bright. Sitting beside the campfire as darkness settled in, Emmett was enjoying the sights and sounds of the campfire. He loved watching others roast marshmallows and enjoyed squishing his own right out of the bag marshmallow. Out of the blue - or rather out of the dark - he exclaimed, "Look! Dots!" as he starred up at the night sky! It has been months since he saw stars and his words failed him. So dots it was!
After reading the book the Blue Hippo, in which a real hippo turns into a toy hippo on wheels so he can be close to the little human girl that he loves and then after being forgotten when the girl grows up, becomes the girl's little baby boy, Emmett has decided that he wants an orange hippo on wheels for Christmas, that his mommy wants a blue hippo on wheels, and his daddy wants a green hippo on wheels.
Christmas is important for Emmett year round. It was a disaster for Emmett when he lost his playmobile Santa figurine. Fortunately, his grandma Rhonda found one in a thrift store. Hurray! After his fishing excursion with his daddy, Emmett has also added an orange fishing rod to his Christmas wish list!
Emmett's Favourite Jokes: These are pretty corny and remember they come from a three year old.
Why does Santa have three gardens - So he can hoe, hoe, hoe!
Why does the cow cross the road? To get to the moooooo-vies.
Why did the banana have to go to the doctor? He wasn't 'peeling' well!
Finally, Emmett will always try to prolong play time, story time, or anytime that he is having fun with the phrase "Just a couple more minutes". Not two minutes. Or five. And if you say two more minutes that is absolutely wrong. It has to be a couple more MINUTES! And yes, he will start to shout minutes if you don't agree with him right away.
The blog is finished, but if you have a couple of more minutes, Emmett has finished all of his check-ups at the Children's Hospital today. His neurologist told him and his parents that Emmett, who has SMA Type 1, now presents as having SMA Type 2. We have felt that for a while, but now it's official. This is a pretty big Spinraza moment for us. This drug is literally a miraculous and life changing five millilitres that Emmett gets every four months. WOW!
It was a little over two years ago that Emmett picked his head up off of his mommy's chest all by himself. Now he's holding his head 'while' being picked up by his daddy 'WHILE' lying on his tummy on the floor! This is an absolutely amazing first. Emmett, you are such an inspiration!
This next video is a little bit on the long side, but I love seeing his sense of humour. I love seeing how he conveniently ignores requests - in other words disobeys - in order that he can help and prolong staying out of bed! Ha ha ha. And most of all, I love watching Emmett wheel himself around. Emmett is wearing his back brace in this video clip. He can sit up but for longer periods of time the back brace is essential.
Of course, what does every little boy love to do when they go to the park ... you will notice at the end of the video clip that as strong as Emmett's neck now is, he does have some moments when he hits tree roots while off roading! But that didn't stop him. He just needed an adjustment ... and then he headed back to the smoother ground of the pathway.
We want to give you an update on the Orange Hippos fundraising results for CureSMA Canada at Florence and Charlie's 10K to End SMA. Our $6200 fundraising total was increased to over $8200 as Valley Carriers - where Emmett's Grandpa Roger and Uncle Ben work - made a substantial donation to CureSMA Canada. Thank you so much!
While we are saying thank you's we also have to thank Canadian Tire Abbotsford for supplying us with a Motomaster Pure Sine Power Inverter and a Motomaster deep cell battery. We have set this system up to provide 24 to 48 hours of electrical power to run Emmett's medical equipment in the event of a power failure.
While looking at the last couple of pictures with Emmett, the one on the bridge with the water is Mill Lake. Then we flipped to the next one and I said, 'Emmett, look! The Bridge at Mill Lake!' and he corrected me. 'No, grandpa. Bateman Park.'
And he was right! Smart kid.
Race Day. 10K! Checking the weather for heat updates ... smoke updates ... Ensuring that enough liquid to stay hydrated is on hand ... Having a healthy snack ...Waiting at the start line ... Adrenaline sets in! Ready ... Set ... Go! That is the pre-race scenario for most racers.
For The Orange Hippos it doesn't look anything like that. The check list is: Suction machine √ Spare Suction Machine √ Food Pump √ Chair battery charged √ Hand Sanitizer √ Bi-Pap machine - it can stay in the van for the ride home √. Go! Wait, what! Go? We're already on our way - why did they take so long to say go!
It was a fantastic day and huge congratulations to the Team that put on Florence and Charlies' 10K to End SMA. They raised in the neighbourhood of $40 000.00 for CureSMA Canada. Of that, our amazing supporters behind The Orange Hippos raised just over $6 300.00 and we greatly appreciate your support for this cause that is so important to our family. The winner of The Orange Hippos T-Shirt draw is Billie - a lovely young lady from England who has been a long time fan of Emmett. Congratulations, Billie! We will get your t-shirt off to you shortly. Family and friends are so important. One of Emmett's best friends, Felicity, and her mom were also there running and rolling by Emmett's side. It was so good to celebrate together.
While getting prepared for the race Emmett had a chance to chat with a fellow participant - his amazing neurologist from BC's Childrens' Hospital. She has participated in every one of Florence and Charlie's 10K to End SMA events. She also is involved as a key member of most, if not all, of the B.C. kids who have Spinal Muscular Atrophy. Any Type. Alisha and Josh met with her three years ago as Emmett's diagnosis was made at BC Children's Hospital and she has been by their side supporting them since. His medical team is absolutely amazing. There is no question that the medical team that is involved with Emmett is a huge part of this families life.
Emmett got off to a great start and was the race leader for the first 100 metres. It was a good thing that the starter wasn't right at the start line or they would have noticed that Emmett took off a few seconds before the offical 'GO!' was sounded. About 400 metres into the race Emmett needed to stop under a shade tree to lie down for 5 or so minutes. He got quite choked up - was it the excitement of the race? the smoke haze from BC's wild fires? The rather strong fishy smell from the ocean? Sure, each of those had a little bit to do with it, but the primary factor is because Spinal Muscular Atrophy interrupts activities and demands attention at a moment's notice. SMA stops the brain from communicating with the muscles - and not just simple things like legs and arms. He cannot swallow. He has challenges breathing. SMA has a major impact upon his life and upon every other child and adult afflicted by this disease. A suction machine to remove saliva that Emmett cannot clear on his own is simply a regular part of life. The fact that he'd been cruising around the park pavilion and the area around Ceperley Park for just over an hour meant that he'd had quite a bit of excitement and exertion before the race even started. If you're wondering about the sepia tone in the photos, that is being caused by the extensive forest fires in B.C. and the smoke is now having a huge impact - including Stanley Park.
Here we have a confession to make - Emmett did not cover all 10K. That is simply not a reasonable challenge for a three year old. It really doesn't have as much to do with the fact that Emmett has SMA Type 1 as it has to do with being three. Thus being distracted by anything and everything that is around him. Emmett did go through the start and finish arch at least a dozen times. He loved looking at all of the rocks out on the beach. As he looked out at all of the ships moored out on English Bay his comment was, "Follow the Leader!". I had to take a second look and then observed all the ships moored in a line. At the awesome stone stairs that led down to the beach, Emmett had to stop - obviously. But he directed me to go down the stairs and back up. He still got to experience the stairs. Going in circles for at least 20 minutes on the smooth concrete pavilion floor. Then he played bashful while meeting all kinds of people - there were over a 100 participants and I'm guessing at least 20 of those were in wheel chairs/power chairs/mobility strollers.
After that initial pit stop at the 400 metre mark Emmett was a solid competitor. Passing by the swimming pool was an understandable challenge - he really wanted to go swimming (the pool being at about the 700 metre mark meant for another early race slow down). Staying on the right side of the pathway was a challenge. Emmett is three and he likes meandering strolls rather than straight line express routes - and at busy Stanley Park there were one or two near misses! Fortunately most people are amazingly understanding about a toddler in a wheelchair who nearly mows them down! Emmett probably covered about 3 kilometres of the total route, but do not let that mislead you. Throughout this excursion he probably covered 8 kilometres - I know that because while I was with him my iPhone recorded over 10 000 steps. There were several instances where I was the pivot point with Emmett doing circles around me making me dizzy. And there were 5 other adults also trying to keep up with Emmett. So there's no doubt that Emmett did the equivalent of between 12 000 and 16 000 steps!
Crossing the finish line brought this 10K roll to an end. This is just one small facet of the endurance race that all of us, Emmett included, are in.
August is SMA Awareness month. Throughout this blog there is a lot of information about SMA. You can also visit CureSMA Canada or CureSMA USA. If you're outside of these two countries, there are advocacy groups in many other countries.
Come Roll With Me ...
and if you don't roll, then you can walk or run. In nine days from now, on August 19th, Emmett and family and friends (aka The Orange Hippos) are going to be rolling, walking, and perhaps even running in Florence and Charlie's 10K to End SMA. Emmett and The Orange Hippos have so far raised over $5000 towards this very important cause. And it's not too late to make a donation, you can click the link to take you to the Running Room where you can make a donation and receive a tax receipt. If you want to support Emmett in this roll-a-thon, please click here to make a donation.
If you want to join us and walk at 10 a.m. on August 19th, we'll be at Stanley Park in Vancouver, B.C. The rolling (and walking for those without wheels) will begin from Ceperly Park, Second Beach Gazebo.
Emmett has been busy and happy this month. He participated at his churches Vacation Bible Camp and loved watching and interacting with the other kids. His mom and dad plus his grandparents have all been busy too. As a result this month's blog is going to be a lot of photos! Mainly of Emmett! Hope you enjoy!
A lovely couple captured this photo of Emmett in the canoe with his mom and dad - and then shared it with us. Thanks so much! This was at Rolley Lake Provincial Park.
Cold water takes a bit of getting used to! The crystal clear water at Golden Ears Provincial Park was incredible!
The orange boat ... just perfect for the key member of the Orange Hippos!
Canuck Place Abbotsford hosted a horseback day. The only downside for Emmett was that the white horse he wanted to ride was deemed to 'spirited' for him. He needed a calm and steady horse. Maybe next year he'll be ready for the spirited white horse! His comments after were simple - 'Again! Again!'
Emmett is still experimenting with this standup walker. He's making great progress but finds that the seat is a bit tough on his boy parts!
Hide and Seek. Simply the best game ever!
Emmett loves watching other people do gardening!
Cold water is certainly not his favourite, but this little man absolutely loves being in the water. And look at that style!
Seeing Emmett sitting is so fantastic. Today I had him sitting on the kitchen counter while his mom and I were talking. I was right there to catch any potential fall, but needed something from his room and asked Emmett if he could sit there for me. He planted both hands on the countertop - like the top photo - and was ready for me to leave. Of course, we are a long way from that stage yet but Emmett's getting ready for it!
Want to win an Orange Hippos T-Shirt. Simply sponsor anyone on The Orange Hippos with a $25 or more donation, then your name will be entered into the draw to win one of these amazing shirts that were inspired by Emmett.
If you make your donation in support of Emmett, then your name will be entered 3X's into this random give-away. All names supporting the Orange Hippos up to and including August 19th will be entered into this random giveaway. If you listed your name anonymously then I'm sorry but we have no way of knowing who you are - we only have access to what has been shared publicly. The odds of getting a shirt are probably not very good. Likely between a 1 in 100 to a 1 in 200 chance. The odds of having SMA - if both parents are silent carriers - is 1 in 4. The odds of being a silent carrier of SMA - if both parents are silent carriers - is 2 in 4. August is Spinal Muscular Atrophy awareness month. This rare disease happens more frequently than you may be aware and Florence and Charlie's 10K to End SMA is supporting those searching for a cure. Emmett is an amazing little boy who appreciates your support.
#emmettsjourney #theorangehippos #curesmacanada