Daily/Weekly Thoughts

A Bike Trailer!

Will that be safe! It takes up too much room. That is way too expensive!

Well, yes! A new bike trailer is very expensive but, by searching marketplace over a reasonable timeframe, we found a WeeHoo bike trailer that was available at a fantastic price and, without further consultation, bought it. The fact that further consultation wasn't sought was not the most diplomatic, but the idea had been bandied about (and not enthusiastically accepted!), so when such a great deal came up it demanded immediate action. The awesome thing about the WeeHoo bike trailer is that it is designed for a wide age range of kids. It has pedals like a regular bike - allowing your youngster to assist with pedalling. And it has a very solid connection to the bike that is pulling it. 

As to taking up a lot of room - well, it does. Yet the amazing thing about the WeeHoo Trailer design is that it is

Change: we used 1/4" mild steel
rather than 1/8"! The angles are 
50/55°. Other dimensions are
fairly close.

quite compact as it only has one wheel. This is ideal for riding trails - which we haven't done yet as we've only had it a couple of days - and getting into all kinds of places. The challenge of the WeeHoo is that it is designed with a single wheel. This is a difficulty because Emmett may require some physical assistance and, if we have to stop and act in a hurray, the WeeHoo does not balance on it's own. So we made 'balance' wheels for it. Think of a much stronger version of training wheels. We went to our local Canadian Tire store for 6" steel, ball-bearing lawn mower wheels and axle bolts. Then we went to a local steel store (yes, there are places like this near you!) to buy the metal and they also did the bends for us. This added to the cost factor but absolutely makes riding a lot easier. (Trails may now be a bit more challenging if they're very narrow.) At first Emmett wasn't sure that he liked being tilted while stopped but he quickly got used to that.  Going down hills absolutely adds to the thrill - this first trek we kept the speed well under control but, as we all get used to it, we will probably pick up the pace. Within safe parameters, of course (Mom and grandma's will be reading this - we will be very safe!). Emmett was quite encouraging about me having to haul him back up the hill! Perhaps this is why all spring he has been badgering me about riding my bike and getting exercise. Maybe he knew a bike trailer was in his future? At any rate, this was a relatively small hill and, while it was a bit of a workout, I was honestly expecting worse.

That covers cost and space. And it covered safety too, didn't it? There's always more room for discussions about safety! We have a traffic flag to ensure that we are noticed. We added a rear bike light to attract driver's attention. The WeeHoo comes with two shoulder belts, a chest strap, and a crotch strap to ensure that the rider is securely held into the slightly recumbent seat. The pedals come with velcro toe straps and a flexible heel strap - this is important to keep the riders feet securely on the pedals. We are experimenting with neck support collars as this equipment/exercise does give Emmett's neck quite a workout. Two that we have tried were not ideal because we need to work around incorporating this collar with his bicycle helmet and his back brace. So we will just keep experimenting until we find something that works for him. We also need to get some kind of platform/tray on the trailer (or the bike) that will hold his suction machine. As you know, Emmett doesn't travel anywhere without that key piece of equipment. So the only other safety concern is the main bike rider - and I've received several lectures about safety and I'm sure that I'll receive many more. To be honest, this concern about my judgement is likely justified. I promise now and in public that I will not knowingly take Emmett over any ramps or jumps or any other action that will endanger his safety. In fact, Emmett has already let me know that he would prefer that I not ride over sewer grates - he finds them too bumpy. But seriously, I think that Emmett is in more danger when his one year old brother, Theodore, starts pushing Emmett and his manual wheelchair about the house!

It is now seven years since Emmett was diagnosed with Spinal Muscular Atrophy, Type 1. It is almost seven years that he has been receiving the drug Spinraza. This fall Emmett will be attending public school in grade two and he is very excited about that. We all appreciate you taking the time to read about Emmett's journey and the adventures that he goes on. August is Spinal Muscular Atrophy Awareness month. To celebrate SMA Awareness, Emmett is out for a bike ride!



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Cardboard Box Boat #2

Emmett and I started planning cardboard box boat #2 almost the moment we got into cardboard box boat #1. That is because Cardboard Box Boat #1 was a terrible boat! Yes, it floated for over ten minutes. Yes, it kept Emmett dry and we had fun! But it was still horrible because it wanted to tip over ever second that we were in it. The middle folded like an accordion the moment that Emmett - or was it me? - got into it. But flawed first attempt at a boat floated - until Emmett got out and I moved and then the back corner separated and allowed the freezing cold water of Deer Lake to flood the boat. So yes, we have been planning a better boat! And, a year later, Cardboard Box Boat number two is the result.  Emmett named this boat "Vroom! Vroom!". This boat had to be an improvement because we were really upping our game - this boat wouldn't be floated on some inland lake full of lovely warm water. This boat would be heading to the Pacific Ocean where we would brave the salt water spray and unforgiving conditions that only an ocean could bring. (Actually, we were in the Strait of Georgia and the water was not even waist deep, but it sounds so much more ominous to say the Pacific Ocean! And it sort of is the Pacific!).

First off, we needed a great box and for that we enlisted the help of Paul and Ellaine at AES Auto. Not only do they build fantastic cars, but they have access to the best boxes for boats in the lower mainland and they supply us with all of our boat boxes. This box was amazing - but the next problem was how to get it to Emmett's place from Burnaby. It literally wouldn't fit into my car nor would it fit into Emmett's van if he was in it. Fortunately for us, a client of AES Auto, who lives around the corner from Emmett, was enlisted! Randy put the box into his truck, brought it back to Abbotsford and then stored it in his garage until Emmett's Moving Company was able to arrange to pick it up.

The trip home was fairly simple and then we began the customization project. While we loved the box, it was simply too large. The width was perfect and we decided that it eliminated the need for outriggers, but we had to shorten this Titanic sized behemoth! Those who are faint of heart may have seen this as a point of entry for water, but Emmett is now a certified Cardboard Box Engineer (he got his certificate from a cardboard box of cereal) and he gave the okay! To ensure that the corners met the stress test required, we raided his dad's garage and got heavy duty zip ties. This workmanship was also thoroughly tested by Emmett's quality control expert, his little brother Theodore! After testing the sides, including using the bite test, our boat was approved.

There's nothing graceful about getting into a cardboard box boat!

Next was duct tape ... a lot of duct tape. If you're thinking that this could be a tutorial to make your own cardboard box boat, you would be correct. Now, please note that we don't build for competition rules but only for fun. As such we allow the use of plastic garbage bags and in a competition this would not be allowed. When you're building for fun, anything goes but we still try to be reasonable. Thus we don't use foam or styrofoam or other materials like that. Zip ties are possibly outside of the rules too; but we allow them. Back to construction, after taping the corners we then apply the plastic garbage bags and then duct tape them into place. Just so you know, we did find that the very rocky Rathtrevor Beach did damage to our plastic covering. Sinking was inevitable. 

And that is it. Everything that you need to know about our cardboard box boat. Except for the bottom. All of the extra cardboard we used on the bottom. We had almost two inches of cardboard in the bottom of our boat - so the spectators who were watching and expecting me to fall through the bottom (as almost happened with boat #1) were greatly surprised when the boat didn't even flinch when my full weight was put in the boat. The width of our boat also immediately shone as there was not even a twitch that would indicate capsizing was imminent. Our Cardboard Box Boat #2 was flawless! If not a bit heavy to carry to the beach! The best part of boat number 2 is that we even got a seal of approval - watch the video and you'll see that this is true!

Thus our June expedition was a great success. But it was not Emmett's only opportunity to be on the bridge of a large ocean going vessel. We had also gained permission from BC Ferries to visit the bridge of the ferry, the Coastal Renaissance, that carried us to Vancouver Island and Rathtrevor Beach Provincial Park. We were given a tour by a third officer in training (who did a fine job and we highly recommend him for a captain's position in the future) and we met the Third Officer, the Second Officer, the First Officer, and the Captain. It was fantastic.

There is still more to happen in June, as Emmett will be visiting Canuck Place and also BC Children's Hospital. It is time for him to have another lumbar puncture to receive a dose of Spinraza. This will be his 27th L.P. - there were some challenges after the last one in May so we are praying extra hard that this procedure goes perfectly. Your prayers and best wishes are welcomed. You can post them here or email help@emmetts-journey.com

Don't remember Cardboard Box Boat #1, here you go:

Now for some camping pictures:



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Lumbar Puncture Update

Emmett's lumbar puncture proceeded normally on Wednesday. All was good and Emmett was back home before supper. It was sort of an exciting trip because we stayed at a hotel Tuesday night with an outdoor, heated swimming pool. We had good weather so we got into our bathing suits and it started to rain. We got down to the pool and it was pouring, but we went in anyhow. The rain was cold but the pool was warm. But as soon as we got in it was like a torrential downpour with hail-like stuff falling. We got out fast!!!

But what was fun has changed today. Emmett has not bounced back like he usually does (we have quite a track history to base this on as he has had either 23 or 26 lumbar punctures). He's in pain and quite uncomfortable. With some medication he was feeling well enough to read a story - this also distracted him from how he was feeling - (see the video story below) but by supper time Emmett was on his way back to BC Children's Hospital. He is being observed now.

Update: Friday morning at 8:41 and Emmett is scheduled to get an MRI sometime today.

Update #2: Friday morning at 11:30 PST. Prepping Emmett for the MRI. He's not a happy camper. The staff at BCCH have set him up with ear plugs, a monitor to watch his favourite show, and talked him through what is going to take place. It's a lot to ask of a little guy!

Update #3: Friday afternoon at 1:00 PST. Emmett watched a Disney movie while the MRI was happening. Josh said he was like a statue he was so still. And the little boy who doesn't even like the sound of a vacuum handled the noise of the MRI equipment well - good thing for video and headphones. That is one step complete - now to wait for the results.

Update #4: Friday evening - Emmett was discharged and is now home in his own bed. The MRI showed a small leak at the puncture site which has already sealed itself. That's what caused the pain. He's a different little boy already. He slept most of today. Thank you for your support and prayers. It's a good thing that it's another four months until the lumbar puncture. Sure hope that it will be uneventful!

Note: Set aside 15 minutes to watch this video. 

This is Paper Bag Princess week:


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Alisha - Happy Birthday

If you have been following Emmett's Journey for a while, then you know a bit about his parents. They are an absolutely amazing couple who are doing everything that they can to be the best parents that they can be. It is quite possible that they may be busier than most parents of a couple of kids. They just happen to have a youngster with a rare disease. A genetic disease called Spinal Muscular Atrophy, Type 1. Did you know that Monday, February 28th is Rare Disease Day. Here's hoping that this blog helps you to be a bit more aware of the challenges that families face as they raise a child with a rare disease.

For example, on Tuesday the accessible van will be packed up with Emmett's power chair (by the way, Emmett no longer sits in a child car seat, but he sits in his power chair. We went to the Sidewinder van conversion showroom/garage/fabrication shop and not only did we get a tour but they showed us how to properly use the special wheelchair seatbelts to keep Emmett secure in his van while staying in his power chair. We will be taking the van back to Sidewinder in a month or so to get some maintenance done on the wheelchair bay. We need to keep it in tip top shape.) but also two suction machines, his bi-pap machine (unlike a c-pap machines one way function, a bi-pap blows in but also pulls out! both ways), his food pump, his back brace, his AFO's and his bathing suit. There is a bunch of other stuff for sure, but the most important will be his bathing suit so that he can go swimming. Oh, and we cannot forget his bunny, Floppity Moppity Bunny.

While there will be swimming and fun, all of the packing of this trip is so that Emmett can get to BC Children's Hospital for his next lumbar puncture and injection of Spinraza. This happens on Wednesday, March 2, 2022. Did you realize that Emmett was one of the first kids in Canada to receive this rare drug for his rare disease. In fact, when he started getting this drug it didn't have a name and it was a blind study that involved just over 120 kids from around the world. It was an experimental drug. And it worked. And it keeps on working and a few years ago was approved for use in Canada. And the BC government has just approved a second drug that can work with people who have the rare disease known as SMA. All because people are aware that individuals with rare diseases need our support. And we need to support the parents and families of these individuals with rare diseases - because the workload is immense.

But in addition to Rare Disease Day. In addition to Emmett's 26th Lumbar Puncture. It is Alisha's birthday! Today, February 27th, 2022.

So today, or when you read this, reach out to Alisha via any means that you have to wish her a happy birthday. I'm not going to say much (and I'm absolutely not saying her age) because I did not ask her if I could write this blog post and I know that this will she will be slightly embarrassed, but this amazing woman who is so dedicated to her family has to be recognized today. She won't tell you about everything that she does. To her, she is doing what any mom would do. And that is absolutely true. But as her mom and dad, we see her going non-stop with both of her boys and do not even know when she sleeps. We love her. Happy Birthday, Alisha. You are an amazing mom and daughter! Love You Forever!

Note: the top photo of Alisha and Emmett is from quite a few years ago. The lower photos are: Alisha and Emmett; Alisha and Theodore; Theodore and Emmett.


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