Monday, September 11, 2017

Last days of Summer

Last days of cabin for summer 2017
As the summer comes to a close it was awesome to reflect on a few things Raquel was able to accomplish with the addition of a mobility scooter through Ren's health coverage.  We were initially thinking of getting her a new stroller for larger children, but a physio was suggesting an electric and manual wheelchair.  We had no idea Raquel was even eligible for funding for one.  I was having a hard time with the stigma of those giant and heavy wheelchairs.  Plus they certainly aren't practical if I'm the dad, too bulky, heavy, and slow.  There are not many places they can get to beyond the pavement, let alone a change in level beyond an inch or two max.  When the light went on and we could get a mobility scooter with some suspension for Raquel, it was a game changer.  In the few months Raquel has owned it we've put it to the test!  Raquel's EB doesn't make walking to school much of an option on most if any days.  Weather, wounds and many other factors make walking any distance in one go, very limiting, even though she's only a few blocks from her new school.

To get Raquel ready for the riggers of ski season I figured there was some training that could be done using the scooter.  Plus how fun it would be,to push the limits of the scooter, her driving ability and focus.  At first we took ever increasing loops near our house from 1, 3, 10kms.  It eventually went up to 15 kms from home.

Put a 7 year old in a vehicle for 3 hours and what happens?

"Are we there yet?"
"When are we going back home?"
"I need to pee"
"I think I have a big blister on my bum!"

Eventually we'd make it home and after short reflection by Raquel, the million questions, few blister pops, frustration etc. the time and distance were hardly a memory and the pride and accomplishment of the trip was all she could talk about to her mother or grandparents.

Of course in doing the tests on battery life and routes the scooter could handle, it was inevitable that one day I'd forgotten to recharge and we found out the hard way what happens when you are 1km from home at the bottom of a large hill and that zero power wasn't to be an option in the future....

We ended up having to find a rope in a random alley to tie from my seat post on bicycle to her scooter and attempt to drag her home, push, cycle or pull.  The frustrating part was discovering that the damn scooter has a limiter at 2 or 3 km/hr even when in neutral.  I went over the bars a few times as the 180lb machine would stop instantly and I'd go flying over the handlebars.

It was pretty easy to see, right off the bat her scooter had lots of potential for a camping trip. Especially Saltspring Island where access to an amazing campsite was well within our range.  Plus, it's a site that had zero risk of one of our plentiful large scale critters rummaging about the site for something or someone to eat.

Off we went, a 20km scoot/cycle in from Long Harbour to Ruckle Provincial Park and two nights camping.

As it is, there is always a risk taking a kid with RDEB camping.
Stuff happens.
Her foot wasn't the greatest dad moment as I firmly planted my knee on her toe while climbing into the tent after she was asleep.

She did her best in the morning to keep it together from screaming, but the fresh ocean air definitely made for a tough few moments before I was able to re-bandage her foot.
For those who don't know. Raquel's has the ever exciting Recessive Dystrophic version of Epidermolysis Bullosa (RDEB) and has exceptionally fragile skin.  An arrant fingernail can scrape the skin from her body.  This often happens when we are merely trying to pull of the various dressing materials that spot her body.  With RDEB if I didn't cut this blister on her toe, within a few more hours the fluid within the skin layers it would continue to push the Epidermis off  creating an ever larger balloon of fluid until it was relieved (cut).  The extent in many occasions of an uncut blister would extend to the entire top of her foot or wherever gravity let the fluid flow between the Epidermis and Dermis. 

She's tough and didn't call too much attention to me cutting at her skin with scissors in a crowded campsite.  Once all the dressings were back together she was immersed in play with her buddy who came into the site with her dad in the luxury of a car.

On the way home we took the short way back.  It was only 10 kilometers to the next ferry.  With the many kms we'd gone in the few months of owning the scooter Raquel was very with it and prepared for traffic as it closed from behind.  She rarely veered into the center of the road or found herself headed for the ditches that lined all those narrow roads.  

It does occur to me that she needs a full face race helmet that little bmx'ers use.

In the end, she's concerned her scooter is too slow.  I'd agree, but I think she has a few more adventures before that gets modified, I'd like a better range too.  A trip to Hope or up the Sunshine Coast might just take 5+ days at our rate of travel.  If I can get that thing to average 15kms/hr and hit 30kms in a day we'd be golden!

1 comment:

  1. This was hysterical to read. Really cool. Hope yall are well



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