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Osteogenesis Imperfecta: The Gift of Mobility

Osteogenesis Imperfecta: The Gift of Mobility

The severity of his Osteogenesis Imperfecta had kept him from being able to do anything more than roll over…if he wanted to go from the dining room table to the living room, for example, we carried him.

When we talked with a few professionals about how to get Isaiah moving, they really didn’t feel he was capable of pushing anything manually himself.

They suggested either an adaptive stroller so he could be supported well or a power chair.

Neither option was appealing to me.  He wouldn’t gain any independence with the stroller…and a power chair? I just couldn’t see it for him yet.

One of my goals for him was to gain strength….how would he do that in a power chair?

I really pictured Isaiah in a manual wheelchair…but when I suggested that, I was reminded of the severity of Isaiah’s OI.

The doctors believed he’d fracture his arms simply trying to push his chair.

My thought process was that he might fracture pushing himself…but what if he didn’t?

We had to try.

Amazingly, at just the perfect time, we had a very generous little boy ask Isaiah to be his “birthday buddy”.

Instead of that little boy, Jack, receiving presents for his big day, his family and friends donated money towards helping Isaiah to start rolling!

I researched different ideas; I didn’t think it’d be too easy since Isaiah is on the smaller side (back then he was wearing six months clothing) but luckily we found out about the 3-in-1 Scooot.

Not only was it basically a little wheelchair, but it also had a feature where he could use it to crawl!

Thanks to Jack and his family and friends, Isaiah quickly received his own Scooot.

It was super easy for me to put together myself (which is fantastic nowadays because I am constantly pulling it apart to clean it of all the crumbs Isaiah drops while eating on the go).

Back then, he needed some extra support, so his physical therapist and I got creative and placed some books behind him.

Before I knew it, he was rolling up and down our hallway.

Once he gained some momentum pushing himself, we shared videos of Isaiah rolling in his Scooot to his doctors, and they quickly helped us get him a custom manual wheelchair for out and about, preschool, and visiting friends and family.

The Scooot gave Isaiah his first taste of independence.

It is his “around the house” mode of mobility nowadays….and he no longer needs any extra head support thanks to all that Hulk muscle he’s developed pushing himself.

It is such an amazing gift to be able to call him to lunch and see him come rolling down the hallway from his bedroom after some time playing independently in there.

His eyes just light up as he pushes himself from point A to point B.

I love when I go in to greet him in bed in the morning and the first words out of his mouth are “Go in Scooot? My orange Scooot?”

The Scooot has given him some control in his life, when he’s living with an uncontrollable condition.

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Vicky Martin

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