Kabuki Syndrome can effect multiple systems throughout the body.
Jonny has several “markers” for Kabuki Syndrome and one of those is “low muscle tone.”
Jonny is now 13 and is continuing to grow, but his core muscle development is not accompanying him.
Recently, just walking down our stairs has become a challenge, and Jonny is opting instead to just “scoot” down them on his rear end.
He has done this in the past, if he was tired or his hands were occupied so he couldn’t hold the handrail, but lately, it has been for EVERY TRIP down our stairs.
He is physically able to walk down them, but he is not COMFORTABLE doing it. (Imagine navigating stairs on stilts. It’s kind of like that.)
He just doesn’t want to do it anymore.
But sometimes, sitting down to “scoot down the stairs” isn’t always an option, and taking a ramp can be even worse. Walking down a ramp is still a downhill incline, but it’s for much longer and Jonny still has the same issue.
He will need to keep developing those core muscles. He is perfectly capable of doing it…But it will take work.
Jonny has been looking for other ways to earn money to pay for his Disney Plus (he used to water Mama’s plants every day in the summer) so I thought it would be the perfect opportunity.
So I have incentivized “stair walking.”
Every time Jonny simply walks down our flight of stairs, (one foot on one stair), he earns 10 cents. Jonny is responsible for keeping track of his walking “trips” down the stairs for the month.
Jonny is pumped because it’s “easy money…”
…and it is. But it’s worth it to me.
Jonny pays $7 per month for Disney Plus. If he earns that by just walking down the stairs, that’s 70 successful treks for him…
…700 stairs. One stair at a time.
…That’s a little more muscle development.
…A little more confidence in his balance.
And a BIG payoff in the long run for him.
Totally worth it for me.
#kabukisyndrome
#MyRareTreasure
#Ausome
