July 9th Update: Emmett is back home. The procedure went well. It is a tough day with a lot of anxious moments - because Emmett knows everything there is to know about lumbar punctures. This was his 18th lumbar puncture - they'll be happening every for months for life, unless a new method or a new drug is discovered. Emmett wants you to know that he does like going to sleep when this happens.
Every four months Emmett receives a lumbar puncture where a tiny amount of spinal fluid is removed and a tiny amount of Spinraza is injected. This is the drug that has reinvigorated the pathways in his spinal column so that his brain can talk to his muscles. So that messages like, "Hey, swallow now!" and "Emmett, hold your head up!" or "Reach out and turn the page of that book!" get through. And Emmett does it. It is a miracle drug - a miracle that requires a huge amount of work. Recently on Canadian news there have been reports about kids' parents seeking funding for a gene therapy treatment. A one time treatment - but it is only for children under the age of two and only in Canada under unique circumstances. Health Canada hasn't approved it yet. Obviously, not something that is available to Emmett. We are, however, so thankful for the drug that is available. The healthcare system that is helping him. And Spinraza is an amazing miracle drug that is absolutely working for Emmett.
So this week, Wednesday July 8th, Emmett will be getting a lumbar puncture and for the first time Emmett will be anethesized prior to the procedure starting. Yes, that does mean that he has been awake and alert for every other lumbar puncture, however, for the last one he was anethesized part way through. You can appreciate that Emmett is quite looking forward to "falling asleep in the middle of the day!". This is something that this five year old simply doesn't do any more.
Four months is not a long time, but four months ago when Emmett had his last lumbar puncture the world was a different place. There was a virus overseas but nobody on this side of the ocean was really in a panic, it was just a concerning situation. Emmett was Abbotsford's Police Chief for a day. Then in the intervening time everyone was suddenly welcomed into a version of Emmett's world. Sanitize! Wash your hands! Social Distancing! Don't go to the grocery store! Stay away from anyone who has a cough! On and on it goes - a new daily plan for everyone. Schools closed. Work places closed. Everyone's life became a closer version of what Emmett has been living since he was six months old. There have been changes for Emmett too. Tough changes.
His family bubble was instantly closed up. Family members who were still working were not able to be inside his social bubble. The rare visits meant being on opposite sides of the yard. Video conferencing became the main stay of story time and more. Physiotherapy via video conferences? Yup. Speech Therapy - hmm, curiously Emmett doesn't hear from them much. Occupational therapy - absolutely. In fact, there have been days when Emmett has been booked for 2 and 3 video conferencing meetings. So incredible. Pam and I have stayed in that family bubble - we're not working outside of the home. We're not going into grocery stores. We are extreme social distancers - if that is even a word.
Yet it is the start of summer, so when BC opened their provincial park system we logged in and booked a campsite for the five of us. Emmett had already agreed that he was ready for something new. Alice Lake has been a spring go-to place. It has cell phone service. Electricity. And the road ways are paved. It is ideal for camping and it was not even an hour away from BC Children's Hospital. Emmett and his family have camped at Rolley Lake and loved it. We've done day trips to Golden Ears. But this year was going to be a stretch - we booked a few nights at Sasquatch Provincial Park. It is about 10 minutes drive outside of cell access. There is no electricity (don't worry, our RV has been fitted with a small inverter that can power all of Emmett's medical equipment). And it is the furthest that Emmett has been from BC Children's since he was five months old. Emmett and Grandpa were up for it; everyone else was optimistic with a large side of anxiety.
We choose provincial parks for two reasons. First off is that they are large and spacious sites with plenty of room for Emmett and us to roam without bumping into someone at a neighbouring campsite. Second, with a medical note children and their parents get the base campsite rental free. This is a huge bonus for a family that is always challenged by the expenses that sometimes never end as you accommodate someone with medical requirements. The large sites also typically mean that there is a lot of trees, birds, and nature trails to explore. You can believe that the power chair batteries were fully charged and that the WeCarryKevan backpack was ready to go.
Emmett was so excited - just seeing the RV arrive in his driveway brought on a fantastic response. The morning that we we heading out, Emmett played on his own all morning while his mom and dad packed. Emmett is a great little boy but it is very rare that he will spend that amount of time without insisting that someone play with him. Once at Sasquatch Provincial Park Emmett wanted to do it all. He wanted a campfire. S'mores. Roasted marshmallows. Hot Dogs. Swimming time. Fishing. Playing at the beach. Going for a hike. And he did it all and then some.
This camping trip was fantastic. And it will give Emmett great memories to dwell on while he is undergoing procedures that he doesn't enjoy at the hospital. We do have to say that the hospital is still one of Emmett's favourite places. There are so many people who know him there. His friends. There's staying overnight at Canuck Place - another fabulous group of people who go out of their way to support and assist Emmett and his parents. Thank you for supporting Emmett. You can send him a message on FaceBook through his parents - or his grandparents. This lumbar puncture is a tough go - but Emmett is even tougher! Literally, the strongest and toughest boy we know.
And now for some photos:
Deer Lake is one of the lakes in Sasquatch Provincial Park. It's a beautiful park. However, Emmett found a pothole with his powerchair and he got stuck! Fortunately, we didn't need to call in a tow truck.
The WeCarryKevan backpack was certainly put to use - and not just for wide trails. This backpack is made for going deep into the forest (so far that means within metres of the main trail!) which is so much fun for Emmett.
We found Eeyore's House! It is always exciting when we find Eeyore's house. Emmett loves his Winnie the Pooh stuffies - and when Emmett is on a hike he is always keeping his eyes open for Eeyore's house. After a hike there is nothing as relaxing as lounging near a campfire.
While fishing during a canoe ride, Emmett caught his first fish. And after fishing it was refreshing to go for a swim in Hicks Lake - only Josh and Emmett were brave enough for that!
Campfires are so much fun - but finding rocks is even better!
Returning home involved getting cleaned up (we had good weather but there was one rainy day) and then having a swim in the backyard pool. Lots of fun stuff so far this summer. After this next injection of power juice is completed, we're sure that Emmett has plans. Because he always has plans!
BC's Provincial Parks recently opened for day use and, after a wait to allow the first rush of hikers to subside followed by a wait to allow the downpour to stop, we headed to Rolley Lake Provincial Park on a cloudy morning. With the weather promising us a day of sunshine ahead while seriously looking like another downpour could begin at any moment, we were off on the 30 minute drive to this park. As we were getting ready I commented that this was a 'we carry Emmett' hike and he quickly corrected me that it was a 'We Carry Kevan' hike. And he is correct, because the backpack that Emmett sits in for hiking is a unique people carrier. It was designed and made specifically for carrying those who cannot walk into places that they'd never be able to go with a wheelchair. We've mentioned it before, and Kevan is a young man who has Spinal Muscular Atrophy Type 2; his friends carried him around Europe in a custom backpack. That prototype is now the WeCarryKevan backpack that is available online. Emmett, as you know, also has Spinal Muscular Atrophy. Emmett has Type 1, however, with the Spinraza doses that he has been getting since before he was one (and he's now five) Emmett has progressed and now presents as SMA Type 2.
With the backpack resting on the ground, Emmett is set into the seat and strapped in. It is very secure and the backpack even has hand holds for him to grab onto when he needs a bit more support. Then with the help of one other person, Josh (Happy Birthday today May 30th, Josh!) picks up the backpack containing Emmett and straps it onto his back. It's perfect. Emmett sits up nice and high so this was ideal for grabbing wet tree branches and shaking the rain water onto his mommy. We were very pleased to note that do to social distancing and personal safety, the trails were labeled for foot traffic to go in one direction only and that 2 metres must be maintained upon approaching another family/group. As we were there mid-morning we had most of the trail all to ourselves (apart from a few people fishing and a couple of other hikers).
The first part of the trail is very accessible and Emmett has done that in his chair, but after about 500 metres the tree roots stop all wheeled conveyances. This is where the WeCarryKevan backpack shines. If Josh can walk there, then Emmett can go there. It was quite funny as Emmett realized this and began giving orders, "Go Up!" and "Go There!" and "Go Down!". Emmett just giggled as they were tramping through the forest. By the way, the up and down is referring to going up steep hills and down hills to the lake. Of course, Emmett did think that his daddy could take him up a tree ... but that didn't happen.
Emmett is a very brave kid, but there was absolutely no way that he would even think about touching the huge banana slug that was crossing the path. Fortunately, it was travelling pretty close to the appropriate path direction so we didn't have to report it to the park ranger. We did see a park ranger and asked if they had seen any bears. Emmett's eyes popped wide open when the ranger responded affirmatively - but we relaxed when she said that the bear had been near her house which was a long distance away from the park we were visiting.
After our hike we had a picnic lunch near the lake and then we sat on the beach. Emmett was throwing stones into the water (possibly to scare the fish away from where daddy was fishing) and Emmett also spent a bit of time fishing himself. He has an amazing Lightening McQueen fishing pole and we saw a minnow chasing after his lure. Today neither fisherman caught anything so it was a good thing we had sandwiches and weren't expecting a fish fry for lunch. While Josh was carrying Emmett, Alisha had a backpack full of gear plus a u-shaped pillow that, when Emmett tires and cannot hold his head up well, comes with the WeCarryKevan backpack and offers both support and comfort on those longer trips. Or those more rugged trails where Emmett gets jostled more than he is used to. Pam and I had the suction machine and water bottles in our backpack. So all of us were carrying a bit of stuff. Josh did find that a walking stick helped - we're going to have to get some proper walking sticks for future hikes.
From Emmett and all of us,
Happy Birthday, Josh!
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!
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.