Resources

Hi Everyone,

Over the years we have made or adapted stuff for Emmett. Some has been from our brainstorming and some has been things we've borrowed from other families. The first resources are the national organizations: CureSMA Canada and CureSMA USA. Here in BC there is the very important Canuck Place and, of course, BC Children's Hospital. This resource list isn't going to be comprised of links to physical therapists, occupational therapists, speech therapists and so on. But more so focus on hands on resources that we think have enhanced Emmett daily activities and perhaps even his family.

1. The Jolly Jumper. Emmett was barely 7 months old when I showed up with a Jolly Jumper. Everyone thought I was crazy until I showed them how the bonnet would hold up his head (which he couldn't do) and the harness would support his upper body. Then they knew I was crazy, but they let me put Emmett into it and he loved it! Seriously. It is the best. Jolly Jumper is the source for the Jolly Jumper, the bonnett and the harness. We did have to modify the bonnett and harness.

2. Helium balloons, feathers, foam sticks. These are just light and hopefully your little one can move them about. We used to tie the helium balloons to Emmett's wrist as he could make them move with one of his arms.

3. Waterway Babies Neck Ring - this is a commercial item. Fabulous for little ones.

4. Toddler's Wheelchair - under $100! Seeing this there was no question, we had to build one for Emmett. The common internet name is a Bumbo Chair and you can build it yourself or contact Bella's Bumbos and for the price of shipping they will get one to you.

5. Electrical Power Back-up System: When your little one relies upon medical equipment, a power outage causes great consternation. We built this battery back up system to cover one day power outages. Add more batteries and you can extend that day to as long as you want (and can afford the battery cost and long term storage).

6. Seat cooling system: We are in the midst of a heat wave right now. We devised this seat cooling system, because when you cannot move and you're sitting in a seat on a hot day, it's very hot, sweaty, and uncomforatble.

7. Legsercizer 2018: This is so that when Emmett is having quiet time he can easily move his legs about. He usually has his AFOs on so there's no pressure points. We don't have an article about it, but I'll post some photos. Easy and cheap to build.

8. Giant Saucer Swing: This is fabulous. Emmett still loves this swing. This is a consumer item - durable and we use it inside and out.

9. Doubled RV battery capacity: Emmett loves to go camping but his camping time is limited when the campground doesn't provide electrical hookups; most of the awesome campgrounds don't have electrical hookups. So we've doubled our battery capacity to  handle this need for longer camping trips.

10. Accessible Bathroom Renovation: Living in a three bedroom rancher, accessibility is easier than a multi-story house. The garage houses a ramp that is protected from the elements. But the bathroom was a challenge. The focus of the renovation was to make the existing space accessible - and Emmett is proud to say that his mom and dad did a great job.

11. Rainbow Marker Holder: You have no idea how frustrating markers can be. They're impossible for Emmett to open as he doesn't have the strength in his grip or his arms. This marker holder still requires someone to pop the markers loose, but then Emmett can draw as much as he wants with the colour he wants - and the markers don't dry out. There's a pic in this blog post - it is a piece of wood, some holes drilled in it, and then the marker lids hot glued into the holes.

More is coming - check back soon.