Daily/Weekly Thoughts

21 days and Counting

The past 21 days have been some of the most unique that North Americans have seen. Unfortunately, other parts of the world saw it so much earlier. So many businesses and venues have been closed down. So many people are sick. So many people are worried. It's terrifying! This is the stuff that April Fools day jokes would have been made of before - except that today's reality is too bizarre for anyone to even have suggested it.

As you sanitize, wash, and look over your shoulder at someone coughing, you are at the beginning of an understanding of our world. The world around a little one with a rare disease. Now you understand why we moved away when you coughed or obviously had a cold. Now you know why we left early if we were in a crowded room and people were sniffling/blowing their noses/coughing. Now you understand why we constantly used hand sanitizer - even though it offended you when we applied it shortly after shaking your hands. Now you understand why from October to April you rarely ever saw Emmett outside of his home.

Now you understand why this is 21 days and counting that we've been in self-isolation. Why Alisha and Josh cancelled their nursing support. Why if we meet you outside while on a walk, we quickly back away if you move into our space. Two metres? We prefer three or four, thank you. You're reading stories about people removing their clothes, bagging them, and showering before interacting with their families. While we didn't bag our clothes, they were absolutely removed, we showered, and changed into fresh clothes before interacting with Emmett after being out in public places. If you thought we were crazy about hand washing and sanitizing before, you should see us now! Plus we've shared before how, due to carrying Emmett all of the time, we stopped the practice of coughing into our elbow and only cough into our hands; you cannot clean your elbow and that is exactly where Emmett's head would be.

It wasn't that we did not want to interact or be sociable, especially Emmett, who loves interacting with others. But like you're probably doing right now with this Covid-19 virus, we were and are protecting those we love. Surfaces, light switches, door handles are disinfected daily - that's normal routine every day around Emmett. What is abnormal is that we literally are not going out - apart from neighbourhood walks on very broad pathways. (The forest path in the last blog, too narrow. It's not happening any more!) We are having Roger, Rhonda, Ben, and Alesha do our shopping - that's not normal. Not going to Canadian Tire. Oh my, that's so abnormal. My Canadian Tire fix has to come from online searches as I cannot go to the store. In fact, I cannot even look at the newspaper flyer as it's not allowed in the house until it's been sitting for days. And for Emmett, the prospects of entry to kindergarten this fall - with health experts indicating that there will be another Covid-19 wave happening then - have changed from excited anticipation to seriously considering planning out a home schooling program. And after beating us two rounds straight, we've decided we don't really want to play Uno with Emmett! He really is good at this game.

Shark-Kaaah is still floating. There is a tiny amount of ballast still in the ballast hold, but after 22 days of floating about we really do not anticipate that Shark-Kaaah will last the week. And we cannot risk getting a helium refill at this time, so time is limited for this galeocerdo. This is humourous, obviously, yet we are quite aware of the serious challenges that are facing families right now. Our family, just like yours, is in the midst of challenges that we can do little about. Emmett's Great-Grandpa Willms has just had a fall and a broken hip - and family cannot even go and see him. The hip has been replaced, but for a man closing in on 90 there are most certainly complications. Great Grandma Willms is facing lung cancer issues - again on her own, without family to support her, and not even able to see and support her husband. Kilometres away in Ontario Emmett's Great Grandpa Ewald has had a minor heart attack (if any heart attack is minor when you're in your 90th year) that coincided with the first of two falls - the first garnering a broken collarbone. This led to a bump up the "needs ladder" and admission into a nursing home. Great Grandma Ewald is now separated from him, still in her assisted living room where she is as comfortable as possible. The challenges of an extended family - exacerbated by seniors' facilities having shutdowns so that family cannot visit - these are being faced by all of us throughout the world. 

The world is full of daily challenges as everyone tries to adapt to and deal with Covid-19. So what does our day entail?

We wake up and go and do some baking. In our PJ's, of course. Why put clothes on! These sour dough glazed doughnuts were to die for! And the Raisin Carrot muffins we made today - so much healthier! And still really good. Emmett likes the texture of flour; that is feels so soft! We purposely put flour on our faces to show to everyone how hard we bakers were working!

And then we do some gardening - like planting a mock orange bush in grandma's garden. This was a lot of fun as Emmett asked all kinds of questions - especially when we dug up some construction refuse from years ago. Then you can see and hear that Emmett is thrilled to participate in home videos with his family:

Then we have some physical education activities like soccer:

It is possible that Emmett could be an Elasmobranchologist when he grows up - but right now he's just a boy with a shark! With a robot voice.

It is possible that Emmett's home school teacher will have to pull up her socks and be more enthusiastic in upcoming lessons - have to keep this little one inspired! But, as you can see, there are days when we change out of PJ's and into real clothes.

And while current affairs are more bizarre than any movie, Emmett had a lot of fun with April Fool's Day jokes. Telling us that spiders were on our heads, ants were in our pants, and that sharks were coming to eat us. My personal favourite - beating on a steel bowl with a wooden spoon while telling grandma that it was time to get up! LOL! I wonder who suggested that to this impressionable little boy! Then he proclaimed "April Fools!" and that it wasn't really her alarm clock! Emmett was quickly forgiven. Me, not so fast.

What will day 22 and following bring? Well, more progress on the bathroom renovations. The next blog post will have some updates on the progress that is happening there! Potentially more antics as we try to keep each other sane and occupied while we're isolated. There are articles floating about on social media that indicated that many of the deaths that are attributed to Covid-19 have underlying causes thus, the articles imply, Covid-19 is not so dangerous. This type of article absolutely angers me! That is the point! Covid-19 attacks those who are at risk and they for so many reasons they cannot overcome this disease. Emmett's lungs are so much stronger than they were just a few years ago, but this virus absolutely terrifies us. We have seen Emmett on a ventilator, with deep suctioning happening to clear his lungs and airways. We never want to see it again. We never want to see someone else, healthy or frail, having to undergo those procedures just because someone else was thoughtless and carried the virus to them. So practice social distancing. If you see someone in a wheelchair or other mobility device, GIVE THEM ROOM! That device is not a mobile as you are - it cannot go down the curb to get away. Thank you for being considerate of others. Wash your hands. And stay at home. We so appreciate everyone's support. Thank you for thinking about and praying for our family - and we're doing the same for our family and friends. Stay Home. Keep everyone safe!

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Self-Isolation

What a week! There's an internet meme floating about right now that says, "Anyone else feel like life it being written by a 4th grader right now? And there was this virus and everyone was scared. And then the world ran out of toilet paper. And then there was no school for like a month. And then it snowed!" As a retired teacher/principal - several years of 4th grade - I do think that this is what has happened!

Well, there's no snow here in Abbotsford but we did have a significant wind storm with temperatures at or just below freezing. We even saw, if you can believe it, icicles. Today, however, the weather is awesome and that is Emmett's coat casually tossed on the back of the power chair. The meme writer, and I cannot confirm the source so if you know please let me know and I'll give credit, hit it right on. But we're going to add to it. How about fit in we demolished our bathroom! Because last Wednesday the long awaited accessible bathroom renovations began at Emmett's house. So not only is there no toilet paper, but there's no bathroom either! As a result, there was a planned move to grandma and grandpa's house. And that is when the North American Covid 19 virus awareness began in full force. As a result, this giant sleepover at grandma's house became a giant sleepover at grandma's house.

That's right. No change. You see, for Emmett every day is a virus scare. He literally hasn't noticed anything different. He is five, of course, and that makes it easier than if he were fifteen. But Emmett's daily life is one of social distancing and avoiding crowds. During this cold and flu season, Emmett was able to get out more than previous years but his parents still were very cautious about events he attended. Visits include direct investigation of potential sources of illness. Visitors - absolutely screened for illness. Wash hands and apply sanitizer upon arrival. You've read here before, if you sneeze Emmett will not say "Bless you" but he will say "Sanitize"! Self-Isolation doesn't mean we cannot get outside - as we are absolutely taking advantage of the awesome weather - as you can see in some of these photos - to enjoy the outdoors and local forest trails. Isolation does mean that play dates and having anyone else in his immediate circle is simply not happening.

So Emmett hasn't noticed the self-imposed isolation. We managed to slide past the missed birthday party (the rest of us missed the crowd of police cars and the friends and the BBQ) by playing with his Air Swimmer (named Shark-Kaaah; and don't say it wrong or you will be corrected) and his birthday presents, which included a remote controlled dump truck to accompany his excavator Christmas Present (just wait until his Easter present - which is a new thing but it was a super Black Friday sale and I couldn't resist). The Air Swimmer wasn't a birthday present but a sleepover present. It is a great distraction and, even better, Emmett isn't afraid of it. You may recall that 2 or 3 years ago he had another air swimmer - a clown fish. He loved that fish from a distance, but it was just too large and terrifying up close. At first there was hesitation but we built it together (and yes, you have to build an air swimmer and it takes a long time) and he loves it. We have to force Emmett to leave the fun and games inside to explore the outdoors: we get to go on walks now that the weather has warmed up and in the evening we play games like Zinga. A good round of Uno has to happen soon too.

Meanwhile, work continues on the bathroom. The floor joists have been strengthened and modified to accept the roll in shower. The plumbing and electrical rough in work has been completed. The flooring is going down today and the drywall is starting tomorrow. So right now this is moving ahead as planned. Hopefully it is a pace that can be continued. Josh - loaded up with face masks, sanitizer, and with full social distancing in effect - is interacting with the workers to ensure that any of their questions are answered. Even though Emmett isn't there, the contractors have been asked to wash hands and sanitize on a regular basis throughout the day. Keeping a medically fragile youngster healthy is an every day, long term project.

For us adults, this self-isolation and the Covid-19 virus has put us all into hyper-vigilant germ avoidance mode. Our hands are raw from hand washing and sanitizing. There's no going out to any public venues - except to Emmett's house in the evening to check on progress and grab more supplies. Good thing that there are some lovely walking areas right in our neighbourhood, like the forest walk pics you see above. Panic set in when some of Emmett's supplies were not delivered on time. Hours were spent on the phone getting everything sorted out and a huge sigh of relief was heard from Alisha when she heard that the courier had dropped everything off. While Grandma Pam almost always has a great supply of stuff in her fridge and pantry (and don't even get me started on toilet paper - it's like Pam has been in training for this pandemic for decades. Now I'm not going to be able to tease her about it as it has certainly paid off!). Huge thanks to Grandma Rhonda and Grandpa Roger who are acting as our personal shoppers. Unfortunately, with this isolation they are not able to visit. Porch drop-offs and FaceTime right now. And while paper towels may not be the most environmentally friendly, they are a necessity to limit germ spread from hand towels.

So things haven't changed and yet they have. It was just two weeks ago that Emmett was getting his lumbar puncture. The procedure didn't go as efficiently as most previous ones. As a result Emmett had a tender back for a few days afterwards. Part way through the specialists moved him from the procedure room to the OR so that they could put him to sleep.  And Emmett is literally amazed that, in the middle of the day, he was awake and then he fell asleep and then he was awake. Even better, everything was done. Emmett told his mom and dad that he much preferred going to sleep to have the lumbar puncture - and that is what his medical team is going to do from now on! While this may not be far from Emmett's regular normal, that the rest of the world is now moving towards our lifestyle is shocking. Going for walks and wanting everyone to remember social distancing. Normal is now abnormal, I guess.

Now for a typical day with Emmett while in self-imposed isolation. Alisha and Josh made the tough decision to cancel their night nursing support, this was a tough decision as some of their nurses have been with them for four years. However, the risk that they could bring a virus into contact with Emmett is just too great. As a result, Alisha and Josh are monitoring Emmett overnight. Night includes ensuring the bi-pap is on, functioning within proper specifications, and that the mask hasn't been jarred out of position causing an air leak. Hi oximeter monitors his oxygen levels and his heart beat. The suction machine (which temporarily was malfunctioning but now seems to be working again; plus there is a back-up machine) is never far from Emmett. While he is practicing swallowing, this suction machine is still used daily; there are still some significant episodes where our hearts are given a workout. Then Grandparents took over in the morning while Alisha went to get an hour or two of uninterrupted sleep. Emmett woke up in a great mood and began the morning telling stories. He would tell one and then get us to tell as story. And this went back and forth for at least 45 minutes - the stories were hilarious. Next Emmett and I repaired the drawers in the bureau that is being used for his clothes. Emmett thought that the screws were very sharp. Then we went upstairs for breakfast. After breakfast, Emmett went into his standing frame and played fishing with Paddington cat. Of course, grandpa got a bunch of sharks and they surrounded Paddington Cat and eventually they tipped Paddington's boat. Emmett switched to his manual wheel chair and then he played with his mommy. It was a really cool Owl present that he got from Felicity, Brendan, and Aiden. He loved creating an awesome owl, read an owl story, and played with little owls for the rest of the day. (The little owls are Billy, Percy, and Sarah.) He also watched the Cincinnati Zoo live presentation of the Brazilian Porcupine (yesterday he watched his favourite, Fiona the Hippo). Then we had lunch and Emmett helped grandma by stirring batter for banana bread. And chocolate chip cookies. Emmett loved the aroma of the fresh baked cookies. And grandpa loved eating them. Then Emmett and mommy went outside and lay on a blanket in the sun in the back yard while reading stories. It was about 15 Celcius - so perfect outside weather.   Then Emmett had his quiet time. This is time for bi-pap and Emmett played with his Toy Story characters plus Billy, Percy, and Sarah (his new owls). Emmett hasn't had afternoon sleeps for months - but quiet time is still an important aspect of his day (for his mommy's sanity too!). After quiet time Emmett came out to help grandpa work on his race car. Yesterday we put on a rear wing - which Emmett thought was really funny. He wondered if it would make the car fly, but now realizes that it pushes the back of the car down. Today we put on the front splitter and air dam. This also pushes the car down - so you can go faster through corners. Emmett asked questions non-stop about everything. Literally. Then we went on a walk to grandma's forest (which really isn't grandma's but we call it that anyhow). We walked to the bridge in the forest and then turned around and came back. Then Emmett helped me remember today's events for the blog when he heard his daddy coming back from the bathroom project. He and his daddy talked all about what happened at the bathroom - including getting the new bathtub installed. Then it was just chatting time, stretching time, story time, and bed time. No games tonight - that will happen tomorrow.

And that is a brief overview of Emmett's day in isolation.

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5 Years Old: Strength in Community

Emmett is FIVE years old!

Birthday's are always exciting. Monday, March 9th was Emmett's fifth birthday. But when your birthday also coincides with being the Junior Chief of Police at Abbotsford Police Department, then all of a sudden your birthday is that much more exciting. Police Chief Serr welcomed Emmett to the department and there was an official swearing in ceremony. It was quite fabulous. Chief Serr talked about the department's vision statement, which is Strength in Community. That is absolutely what the fabulous Abbotsford Police Department has demonstrated to Emmett, pardon me, Junior Chief Emmett. That our community is one of strength. In his five years Emmett has absolutely seen how the community has rallied to support him and his family. Chief Serr also talked about how Integrity, Honour, Courage, and Service are the APD's values. And that courage is a keystone of the police officers and the police department - and then he commented on how Emmett's courage in his five years surpasses theirs. Huge recognition for a very brave and courageous little boy. Thank you, Chief Serr. We certainly have seen first hand how your amazing force demonstrates these values.

The entire Abbotsford Police Department made Chief Emmett's day a great one, but there are a few that I'm going to mention by name (at the risk of forgetting someone important). Obviously, Chief Serr for making time in his day to visit with Emmett. Sgt. Joiner and Sgt. Bird for coordinating this celebration and ensuring that everything worked together. And especially Constable Kern. Emmett met Constable Kern at the Abbotsford Air Show in the summer of 2019. I apologize to the air show for saying this, but the Snow Birds and the aerobatics paled beside Constable Kern, his police cruiser, and the attention and care that Constable Kern shared with Emmett. There is no question that a bond was formed that day.

Abbotsford Police Department - thank you for this very memorable day. Pizza and ice cream in Chief Emmett's new office, fantastic. There were a few things that Emmett wanted to sign into official business. They were something like this, a) every Wednesday was 'Talk like a Pirate Day', b) quiet time in the afternoon, c) pizza day once a week, and d) once a month his grandpa (and Emmett, of course) gets to race around in a police cruiser with the lights and sirens on (This last one may be his grandpa's idea). And thank you for this coming Saturday. Blog readers - stay tuned for that!

Emmett, right after the Junior Chief ceremony. Emmett has his badge!

Chief Emmett learning about fingerprints!

Chief Serr has a love for ships - and Chief Emmett has a love for pirate ships!

Chief Emmett getting chauffeured about by Constable Kern.

Chief Emmett and Constable Kern checking to see if Mommy has any priors!

Getting his tie straightened before the ceremony!

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February Was Busy!

 

February was an awesome month. Not only is it Alisha's birthday month but also because Alisha, Josh, and Emmett went exploring with their new "WeCarryKevan" backpack that we mentioned in the last post. The great thing about this WCK backpack is that it is comfortable for Emmett and they can go explore areas that otherwise would be impossible for Emmett to access. All it takes is a few huge roots or rocks and a wheelchair simply cannot traverse that terrain. Sure, it's possible to just pick up and carry him - but try carrying a heavy weight on a hike. It's not much fun and that is why backpacks were invented. And the WCK backpack is specifically designed for this purpose. Of course, that doesn't mean that it isn't a workout for both dad and son! Mom too - as she was carrying the suction machine, food pump, and other assorted necessities. The short hike that they went on turned out to be quite a gruelling ordeal. Lots of fun but also an awful lot harder than they anticipated. Hiking poles are a near future expenditure.

Meeting Brock Boeser at a skating event hosted by Canuck Place was an awesome experience (for Josh). Brock is a 23 year old Vancouver Canucks' player (yes, there is a close rapport between the Vancouver Canucks and Canuck Place) who, as a rookie with the Canucks, scored 25 goals in his first 44 NHL games. Eventually Emmett will find that interesting, but at this age Emmett (and Alisha) were far more interested in meeting Fin, the Vancouver Canucks' mascot. This meeting, however, was like a typical first meeting with Santa Claus. Fin was just too close and startled Emmett! As a mascot at hockey games, Fin does an amazing job of inspiring the crowd with his antics, speed, and dexterity. For a little kid with SMA, Fin skidding to an abrupt stop right in front of him with a spray of ice and snow was just a bit much for Emmett. He preferred Fin at a distance. Or behind him! LOL!

Thank you so much to Canuck Place and to those who support Canuck Place. Events like this are fantastic for the entire family (well, maybe not grandpa who wasn't invited) and provide a rare opportunity for this little boy who has a rare disease. Canuck Place also provides opportunities for overnight respite and support and so much more. It is an invaluable community support. BTW, did you know that the last day of February is Rare Disease Day. 72% of the rare diseases in the world are genetic. 70% of those genetic rare diseases start in childhood. Spinal Muscular Atrophy is a rare disease. Emmett has SMA Type 1.

 

 

You'll remember how Emmett was trying to push over the stop sign that was in the middle of his sidewalk. And yes, it is his sidewalk as he travels to 'his park' that is just down the street. In addition to the stop sign the access to the street was not accessible at all. The City of Abbotsford was out in full force recently, making an amazing spectacle for a little boy to watch. Two dump trucks, two excavators, a small truck and lots of workmen made for an exciting morning. We have to tell you, there was only one city excavator present. the second excavator was Emmett's! He was supervising and lending a hand with his equipment as needed. This is such a welcome upgrade to Emmett's neighbourhood. And while he will miss getting to try to push over the stop sign, it will be so much nicer for daily travel.

 

While observing the city excavator at work, Emmett noted that his excavator was different. That his did not have a shovel on the end. This is quite accurate, as his excavator has grappling claws that are fantastic for picking things up. They are not good for digging up sidewalks. He had forgotten (the Christmas morning bustle makes it easy to forget things) that his excavator did indeed come with a shovel. This meant that tools had to come out and he went to work removing the claw and installing the shovel. Now he is ready to go out and dig up mom's gardens. 

Emmett will be going in on March 5th for his next lumbar puncture. His 17th one. Please remember to keep him in your prayers on that day. You can certainly appreciate that he does not look forward to this event and it does cause him anxiety. He is one smart cookie and he knows the procedure room where it occurs - he calls it the 'hurt room'. And he knows the doctor too, he gave him the nickname of the 'hurt doctor'. Obviously everyone tries to minimize this anxiety and the discomfort. We're hoping to hear that this procedure goes incredibly smoothly.

One of our answers to prayer is that Emmett has had a very healthy winter. Alisha and Josh go to great lengths to keep this little one happy and healthy. That involves sanitizer. If you know Alisha, then you know that their house is cleaner than most hospitals. Guests must use hand sanitizer. Have a cold, then realize that you're not welcome in the vicinity of Emmett. If you have tried to purchase hand sanitizer recently, you can appreciate the stress that Alisha has been experiencing as the shelves are bare. Product is in short supply and if it does arrive at stores, it is gone before it has time to get comfortable on the shelves. We've seen higher than normal prices on Amazon and we've had online orders cancelled as the supplier knows that they cannot fill the order. So it was with great relief that we managed to get a case of 12 bottles south of the border to bring home. We are not sponsored by Purell, but hey, Purell, if you want to we'd be happy to accept your offer!

March. Lumbar Puncture on the 5th.

Family Birthday on March 9th. FIVE YEARS OLD. (oh yes, there will be a blog post shortly afterwards)

March 11th - bathroom renovations for an accessible bathroom begin. (Emmett, Alisha, and Josh will move in with Grandma and Grandpa for a while.)

March 14th - kids birthday party with some of Emmett's friends. And family too.

Here are a few more pics. The WCK backpack comes with an awesome neck support to hold up heavy heads. As Alisha and Josh were just taking Emmett on a short hike they left it at home. Everyone underestimated the challenge of this short hike and all felt it, including Emmett who just couldn't hold his heavy head up anymore! Sweet little kid!

 

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