Daily/Weekly Thoughts

Daily/Weekly Thoughts

A Time To Give! Part 2

 

Thank you to everyone who supported Canuck Place through Emmett's fundraiser.

$1950 was raised for Canuck Place, and a Canuck Place benefactor doubled that to make the donations worth a total of $3900.

Two of Emmett's Santa Plaques were awarded: one is going to Anne in Ontario and one to Alesha in B.C.

Thank you for your support! Happy 2021!

Orange Hippos - you've got to be wondering what this has to do with a little boy with Spinal Muscular Atrophy, his Canuck Place Fundraiser, and anything to do with reality. The fact is, absolutely nothing and yet absolutely everything. Because this team name/phrase is from Emmett's incredible imagination. In this pic, taken in 2018, it shows Emmett when he still had front teeth and when his Orange Hippos t-shirt still fit him. Emmett is holding the original Orange Hippo, which for several months was his most favourite possession, and playing with his giant hippo, Po. Even now, when I asked Emmett and his mom where the original orange hippo toy was for the headline photo that is above, he could direct me to the exact location where this prized toy was located. No help was required to find Po!

Emmett has many favourite animals, but without question the Hippo is the absolute and ultimate favourite. And while he will rattle off several colours that he likes, there is no doubt that Orange is his 'top of the charts' favourite. In 2018 when we

A 2018 Orange Hippos photo shoot.

were getting ready to participate in a roll/walk/run for Spinal Muscular Atrophy that was held in Stanley Park, we had to come up with a team name. While the adults bounced several ideas around, Emmett's suggestion was "The Orange Hippos"! That name stuck! The t-shirt was created. And the rest is history.

So there you have it, the name the orange hippos represents a little boy's incredible imagination, sense of humour, and love of life. This is Emmett's fundraiser - and the Orange Hippos started from his imagination but has morphed into the team that includes all of his family, friends and supporters.

If you make a donation to my.canuckplace.org/orangehippos then you will be making a donation to support many medically fragile youngsters and their unique imaginations. Plus if you make a donation this month (December 2020), your donation will be matched so every $1 you donate will mean $2 for Canuck Place. As of now, the fundraiser is at $1100 - we are really close to our goal of $1225.

Emmett loves the orange hippos and would love to see every room in the house decorated with them. This, of course, is maybe going too far for some members of the house! LOL!

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A Time To Give!

Canuck Place Fundraiser!

Click on this link to go to Emmett's Canuck Place Fundraiser and make a donation to Canuck Place.

https://my.canuckplace.org/orangehippos

All Funds raised in Emmett's Fundraiser go directly to Canuck Place. Tax Receipts are available. Emmett will select two people from everyone who makes a donation to his fundraiser for Canuck Place to receive one of his Santa's Sleigh creations. Thank you for supporting Canuck Place, an organization that means so much to us.

Recently a Canuck Place van came down the street to Emmett's house. Christmas music blaring through the van's windows. When it stopped at his house several elves and a Christmas tree rushed out of the door bearing gifts for Emmett. It absolutely made his day. And then as fast as they appeared, they vanished. Off to the next medically fragile child so that they could bring Christmas cheer. This socially distanced Canuck Place drive-by was a fantastic 2020 opportunity for Emmett.

Canuck Place is far more than a place that provides Christmas cheer. Every day, Canuck Place is there for children with life-threatening illnesses and families across BC who require support to navigate through one of the hardest times in their lives. Emmett was just 6 or 7 months old when he first visited Canuck Place, which provides clinical care at two BC locations as well as consultations in home or in hospital. Canuck Place provides space for families needing to manage their pain, create special memories, and share love - all at no cost to families. 

Thank you.  Emmett and his entire family appreciate your support.

To make a donation to Emmett's fundraiser, click here!

Dec. 13 update: $125 has been raised. Thank you!

When Emmett was 5 3/4 months old (he's now 5 3/4 years old) Emmett was a little boy who could not support his own head, roll over, or sit up. He couldn't move his legs and the loss of arm movement was so massive that it was inevitable. Emmett was also losing the ability to swallow and sitting in a car seat/baby seat was a danger - he had to be lying down or he would choke on his own saliva. At that very difficult time with multiple appointments at BC Children's Hospital, Canuck Place was there. Recently, Emmett's food pump stopped working - he cannot swallow so all of his nutrition and liquids are provided through a G-tube (gastronomy tube) - and Canuck Place was there and a supplied a loaner pump almost instantly. This is a fantastic organization and we hope that you support it. If you feel that it's too far away from where you live that is understandable and appreciated, but then support a similar hospice near you. Thanks.

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Water Study

Building a terrarium!

When you live in the B.C.'s Fraser Valley, you know that the fall means rain. And not just a few drops here and there. Not a large cloudburst and then some blue sky. But day after day of deep grey skies, filled with clouds loaded up with moisture, moisture that never seems to stop falling from the sky. This seemingly endless precipitation provides the perfect opportunity for a water study. Therefore, Emmett is studying water. When we are outside going for walk/rolls or bike rides, we study the rain. For example, yesterday we discussed how rain flows downhill. We saw and studied how the fall leaves got stuck at drain grates and caused the water to build up and find a way around the leaf dam. We laughed together when we broke the dam and then watched the flood dissipate and heard the water crashing down into the sewer. We would have lifted the grate and looked down it, but only a city worker can lift the grate and Gerry, our friend the city worker, wasn't available. (**Please do not tell Emmett that anyone can lift a sewer grate. He already has gone through phases where he requests every sewer grate be lifted, and our response is that only city workers can do that. Fortunately, Gerry the city worker has slightly appeased Emmett's curiosity by lifting the sewer grate for him.)

At the Great Blue Heron Reserve we participated throughout October and early November in a weekly morning outdoor educational session in which our guide, Michael, taught us about water bugs, showed us the many different types of fish that live in the local streams and rivers, discussed all of the birds that depended upon the wetlands for food and shelter, and how animals like the beaver both enhanced the wetland yet perhaps caused issues by blocking pathways used by salmon as they returned to their home stream. With his mom and dad earlier in the fall we played on the beach of a lovely lake that had been created by hydro-electric dams and we discussed how these massive dams created electricity that powered his food pump, bi-pap, oximeter, his dad's coffee maker, and so much more. As a result we have been learning about water and the importance of water for all of us for several weeks. Also, I'm pretty sure that I used one of Emmett's syringe's to spray him with water a few times. Of course, we have to tell you that Emmett loves bath time and 'swimming' in the bathtub.

So with this focus on water and these deep grey clouds overhead, it only made sense to study the water cycle. To do so we went to the recycle bin and resurrected the pop bottle rocket. While it makes sense to do a rocket launch comparison in sunny weather versus rainy weather and see what type of weather is most conducive to rocket launching, that is not what we did. The pop bottle rocket has been retired after several launches and isn't going back into action. We saved most of the customizations for flight that Emmett had done (that is, stickers) but that was all that was left of the rocket. We then used a sharp knife to cut the top off of the bottle. This top part needs to be large enough that, when you invert it, the top friction fits into the bottom of the bottle. Like a funnel. Then we used a ruler and a permanent marker to put a measuring gauge on the side. We did centimetres. This took not much more than 5 to 10 minutes and it was the easy part. The hard part was getting Emmett to select a location for this rain gauge. He quickly discounted the front yard, as he knew that something as valuable as a pop bottle rocket converted to a rain gauge would be at high risk for theft. While he liked the idea of putting it on the back porch because he could get to it easily, he also knew that this would not get much rain because the back porch has a roof. So then he settled on the roof. That's right, he wanted his frail and elderly grandpa to put this rain gauge up on the roof. Meaning that every time it needed to be checked, his wobbly and fragile grandpa would have to climb up the ladder and go onto the roof. Well, I refused that option. Emmett laughed and then we settled on the backyard, right where Emmett could easily see it. Within the first three hours our rain gauge gathered about 1 centimetre of water. After 24 hours it registered 2.2 centimetres of water. As there has been nearly 22 centimetres of rain recorded in Abbotsford for the month of November, our rain gauge is fairly accurate.

While we were collecting rain outside, Emmett and I decided to make it rain inside the house! Emmett's first plan was to take the roof off of the house, but his mommy and daddy said, "NO WAY!" so we couldn't do that. Instead to see how the water cycle works we filled the electric kettle with water and turned it on. Then we filled a bag full of ice. Then when the kettle was close to boiling a grownup held the bag over the boiling hot kettle spout. The kettle was like the heated up earth and the water vapour going up was real. When it hit the bag of ice, that was like being high in the atmosphere and hitting cold air, so the water vapour turned to condensation. When the condensation got heavy it turned to rain! And we made it rain in the house without taking off the roof! We didn't even need rain coats.

This last part has nothing to do with water and rain. It is a reader's theatre that Emmett created with grandma and grandpa. One of our critics pointed out that Emmett wasn't reading everything and that is true. He had a bit of stage fright and anticipated his lines, but I still think that he did a spectacular job. So without further ado, here it is and we hope that you enjoy it. Mo Willems, let us know what you think!

Making it rain inside the house!
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5 YEARS!

This is Emmett's fifth anniversary of the start of Spinraza, which in 2015 was known as SMNrx. This name changed to Nusinersin and now is best known as Spinraza. Emmett had the first of many lumbar punctures on October 7, 2015. This fifth anniversary post got postponed as BC Children's hospital had to reschedule the October 2020 until November. This LP, #19, will take place on Monday, November 2, 2020.

EDIT: Everything went well today at B.C. Children's Hospital. Emmett will be home soon.

There was no treatment available when Emmett was diagnosed with Spinal Muscular Atrophy, Type 1 five years ago. Emmett, however, was just the right age and weight in the fall of 2015 to be accepted into a study for a pharmaceutical drug trial. It was a drug that had a lot of promise but with a drug trial there are so many questions and very few answers. This trial would involve 124 similar aged babies from around the world. All with one common feature - they had SMA Type 1.  SMA is the number genetic cause of death for infants - the trial for Spinraza was brought to an early close as those on the drug were improving and those receiving the placebo were failing - they were then given the drug. It was approved by the FDA and Health Canada afterward.

To understand how much Emmett has progressed, you need to realize that Emmett had lost all movement of his legs by 3 months of age. By 5-6 months of age he'd lost the majority of movement in his arms. He could no longer grasp things with his hands and fingers. He'd never been able to hold his head up. Obviously, he could not sit up on his own. Travelling had to switch from a car seat to a car bed - as the seated position caused too many issues with choking on saliva. All nutrients and liquids were by G-Tube (gastronomy tube) as swallow studies revealed that he wasn't swallowing properly. There were a trip or two to the emergency room due to choking/stopped breathing. October 2015 Emmett was accepted into the trial for this drug - it was a blind study in which 2/3 of the children would be administered the drug while 1/3 would get a placebo. Apart from the fact that even with a baby it's difficult to fake a lumbar puncture, small signs of improvement told us Emmett was getting the drug. You see, with SMA an individual may level off in their decline but there was no medical record of any individual with this genetic disease showing improvement. Emmett was improving.

Fast forward five years to 2020. There are now multiple treatments available for SMA.  The first is this drug Spinraza, the treatment that Emmett is on, which can be administered to SMA patients at any age. After the initial dosing, it is administered every 4 months by lumbar puncture. Babies who receive this treatment immediately (days old) are walking, eating, and demonstrating incredible movement. There is the gene therapy treatment that has been getting a lot of press lately. It is the $2 million US dollar one time gene therapy treatment called Zolgensma that is for children under 2. Then there is the oral treatment that is taken daily called Risdiplam (Evrysdi). Of these three which are all approved in the USA for use, only Spinraza is approved in Canada. And in Canada provinces still limit, due to financial implications, who may receive Spinraza.

Emmett can hold his head up. He can wheel himself around on smooth, flat surfaces with his manual wheelchair. He can hold a pencil or marker and print his name. When placed in a sitting position, he can maintain it for a considerable length of time. He loves telling stories and playing jokes on people. He loves to have ice cream - he takes very tiny spoonfuls and can feed himself. However, his suction machine is always within reach as choking is still a significant concern. Emmett can usually tell us when he requires suction. While infrequent, there are moments when intense suctioning is required and everyone's heart beats hundreds of times a minute. Once cleared, Emmett returns to play instantly. He's fine, even if we may need a few minutes to recuperate.

This is the fifth anniversary of Emmett being on the drug Spinraza. To celebrate he is getting another lumbar puncture on Monday. More of this drug which has changed his life. More stories of his joy of living to share.

2017 - Age 2
2018 - Age 3
2019  - Age 4
2020 - Age 5

 

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