Daily/Weekly Thoughts
Daily/Weekly Thoughts

A Great 10K

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.

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Come Roll With Me!

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.

If you want to support Emmett in this roll-a-thon, please click here to make a donation.

#emmettsjourney #theorangehippos #curesmacanada

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Support the Orange Hippos/get a chance to win a T-Shirt!

Support The Orange Hippos!

We might send you an Orange Hippos T-Shirt!

Yes, I'm posting once more about the Roll-a-Thon that Emmett is going to be participating in this coming August 19 at Stanley Park. Florence & Charlie's 10K to End SMA is a tremendous cause. When Emmett was six months old he participated in his first Florence & Charlie's 10K to End SMA but he hasn't been strong enough or well enough to participate since. Until this year. When he was six months he rolled along in a stroller. This year he will be rolling along using his power chair. Funds raised go to CureSMA Canada - that means these funds may very well be supporting someone in your neighbourhood. Orange Hippo team members will be wearing the amazing Orange Hippo T-Shirt. One lucky person who has sponsored The Orange Hippos in Florence & Charlie's 10K to End SMA will be randomly chosen to receive an Orange Hippos T-Shirt. Seriously. If you 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.

If you want to support Emmett in this roll-a-thon, please click here to make a donation.

 

 
 
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Hurray! No More Stroller!

Hurray! No More Stroller!

 

Emmett just had a lumbar puncture and an injection of Spinraza - also known as Nusinersen - on Wednesday, July 11th. This means a very full morning at BCCH and part of the afternoon. Since Emmett started receiving this drug almost three years ago (he was involved in the blind scientific study to test this drug) the required time at the hospital has been greatly reduced. This is good but it also means that many activities are compressed into the morning.

Hanging out with Emmett at BCCH is sort of like being Cliff from Cheers while he is hanging out with Norm at Cheers (too young to understand - check out Google). Literally from the moment we parked in a parking spot staff on their way to work spotted him and called out to chat with Emmett. We didn't walk down one hospital corridor without someone exclaiming "Emmett!" and engaging in an enjoyable conversation with Emmett and Alisha. All of them were wonderful conversations but the best was a nurse who had cared for him while he was battling RSV. She was amazed to see this little boy sitting in his stroller (mini-manual wheelchair), talking, and not only alert but also very intelligent (hmmm, bit of grandparent bias possibly there!). 

The challenge of this intelligence is that Emmett could tell that these events and tests were leading up to a procedure. The blood work first thing in the morning was very uncomfortable and never something that any little one enjoys. Emmett milked that for all it was worth - showing everyone that he was chatting with the two bandaids (ouch, yes, it took two tries to find one of his tiny veins). Off to physio where he underwent an assessment. This is a tough one for a grandparent to watch, because the assessment is part of the study so only specific devices can be used to encourage him. Well, they aren't the right ones so Emmett certainly doesn't show off his best moves. Which means that I'm trying to bite my tongue and not say but Emmett can do so much more! Or the more tough one, "What kind of a ridiculous test is that for a kid with Spinal Muscular Atrophy!" - but I didn't say it (too loudly or in front of too many people!).

There's a FaceBook post about four kids, Emmett being one of them, in Charlie and Florence's 10K to End SMA in which these four kids are being recognized and also described as warriors. That is so absolutely true. Warriors in the fight against SMA. During the initial study our family wasn't allowed to be present during the Lumbar Puncture. Now we are and while we want to be there for Emmett - there's a part of us that really doesn't want to be there. You can understand that, I'm sure. He knew it was coming. He asked that it didn't happen but knew that it would. He cried and fussed and wiggled and twisted. And as much as this hurt to see it was also amazing. You see, his voice is now so much louder than it used to be. He can wiggle and twist! HE CAN WIGGLE AND TWIST! Oh my goodness, this big little boy can move. With the next procedure in four months he will be getting additional sedation - it's too hard to do a lumbar puncture when the little boy who is getting this procedure is trying to dance about the bed. A Painful procedure, no doubt, but this little warrior was up and about and happy (relatively) and ready to chat in less than 30 minutes. He thanked the doctors and nurses and procedure coordinators as he left. And stopped with his mommy and chatted with the family of a very tiny little one who was going in for his first spinraza shot. That little guy has got a long and tough road ahead - but he's getting the best care available. Even though the drug is still not easily accessible in Canada (there are so many funding questions and roadblocks) the pharmaceutical company is working with hospitals and families to make it available. Especially for children who are diagnosed with SMA Type One. After that chat, Emmett got loaded into the van where he could finish watching Cars (this was a hardship for Emmett that he watched only under significant protest. And only because his grandpa forced him to watch it!) and then watched his favourite Toy Story 2 with Woody the Cowboy and Buzz (and Buzz 2). We have lost count on how many times Emmett has been to Vancouver - and he's watched Toy Story 2 every time!

We are also thrilled that Emmett gets to borrow a KidsWalk for the next few weeks. This is a really cool walker set up that bears all of Emmett's weight but allows his feet to be on the ground.  Emmett only had three short sessions in it, but he learned to push himself backwards using this hands and feet. The smile on his face when with his legs only he is moving himself backwards! This is such a beginning stage and so obviously even tinier than baby steps, but it is absolutely a step. This little boy is starting to take steps. He's starting to walk!

You're probably wondering about the stroller title. Emmett got this cool stroller when he was two so it will still be with him for years to come. However, it is not Emmett's first choice for transportation. And, Emmett's power chair - in his own words - would just "Stop"! Sometimes it would stop more than it would run so it was very frustrating for everyone as it was malfunctioning terribly. As a result it went in for repairs - literally on the same day that Emmett went in to Vancouver to prepare for his injection. And his chair came back yesterday. When his mom told him that the shop phoned and that his power chair was on it's way back he paused and then cheered. It took a moment for us to decipher what he said next but as he kept repeating it, there was no question that it was 'Hurray! No More Stroller!' This little boy loves the independence that his power chair provides.

August 19th Emmett is going to be rolling in Charlie and Florence's 10K to End SMA. He has named his team the Orange Hippos. Emmett has already raised $250 for the fight against SMA. If you would like to sponsor him, you can click on this link: Click here

We stopped to see the ocean at Squamish, B.C.  That's Shannon Falls in the background. The wind was strong enough to blow us over. We almost didn't get out of the car as we thought Emmett would hate it. Rather, he absolutely loved it!

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