Ellie came into our lives in 2011, a couple months too early, and with the diagnosis of a rare genetic disorder called Prader-Willi syndrome.
PWS is a spectrum disorder, and no two individuals with PWS experience the same set of symptoms. Ellie's primary concern is early onset hyperphagia.
Whoa! Big word. Hyperphagia means an insatiable appetite, essentially the inability to feel full, or the sense that you're starving any time you're not eating.
This Hunger, it's the only trait about PWS that's universal: it affects everyone. It's probably not like you would imagine, either, people can (and sadly have) eat so much their stomachs rupture. Food safety is our #1 priority.
For most, the Hunger kicks in around 7-8 years. For us, it's been with us since the beginning. We consider the early onset part to be a blessing. We set rules right from the start, so actually, as crazy as it sounds, Ellie's Hunger is manageable.
Paired with Ellie's Hunger, are a super slow metabolism and low muscle tone! She's limited to 900 calories a day, and her lazy body makes it so much harder for her to exercise. That's pretty much the worst combination of traits, and what doctors told us would result in her becoming morbidly obese, and dying young from obesity related issues.
Well, that's not happening!
For the last 7 years, our lives have revolved around countless appointments, followed by thousands of hours of therapy to address the varying challenges she faces.
Ellie's least favourite therapy (although she goes to the best and most fun clinic) is physiotherapy, because "It's sooo hard".
We go every week. This week she did an obstacle course to work on balance, jumping and coordination, a bosu ball balance and throwing exercise, and a bunch of core exercises. She needs constant motivation, and my voice is usually hoarse by the end from cheering her on.
All of that back history brings me to why we get outside.
You know where she accomplishes more in terms of physical literacy in an hour, with no need for cheering, or even the recognition that she's "working out"? Outside. Not in the garden, but really out in nature.
Every weekend all summer, we have made a point of going on an outside adventure.
We just got back from a week on Vancouver Island, where we rented a house with a forest and a huge beach. We hiked every day, sometimes just short ones, other times for a several hours. On the long hikes, Ellie struggled a bit with motivation (ahem, she's not the only one!) but she persevered and managed the whole hike without being carried.
In one week of being outside, Ellie crossed off several of her therapy goals, balance beam being one she's been working on for ages! All thanks to her Daddy who put a plank from the hill down to the beach. Her physiotherapist couldn't believe the difference, so much so that we get a couple weeks off sessions to spend more time outside.
The more Ellie exercises, and the stronger her muscles are, the more she's allowed to eat, while maintaining a healthy body composition.
Being outside just makes sense, and it's worth it regardless of the weather.
I'm so excited to be homeschooling Ellie in September, and you can be sure to find us #outsideeveryday