Monday, January 18, 2016

Shriner's Hospital for Children

Sophia has had a variety of challenges relative to missing her hand.  We'd been told that she'd need surgery to fuse her elbow (which bends in both directions instead of just one) before she'd be able to use a prosthetic, so we put it off, not wanting to put her through that sort of surgery at such a young age and wanting her to be old enough to have some say in the process.

She's been going to gymnastics for a few years.  She'll line up with the other kids and do all the things they do and fall flat on her face every time (because it's very difficult to do a handstand one handed or do to a one-armed cartwheel, even if you're good at it, and particularly if you're little).

Jumping off the rings at Gymnastics

She never gives up.  She just jumps to her feet with a smile and does it again and falls on her face again.

She started riding a bike and we found it's a bit like watching NASCAR... because of how she has to loop her stub around the handlebars of the bike which then tilts the steering to an angle-  she's always going in a circle the same direction.  One day she was really sad after riding her bike.  She said, "Mom, I just want to go straight."

She also said she wanted to be able to go somewhere and come back home.

That threw it over the top for me.

We started looking at options and were discouraged with what insurance will or won't cover.

Then we found Shriner's.

Honestly, there are no better people on the planet.  Their hospital is catered to children with serious needs and every single person we encountered there was joyful and caring and hopeful.

We had a consultation and they determined that she would not need surgery and that yes, they could help her.

They did molds of her arm, and instructed us to find the fabric we wanted to have cover it.

And they made her a wonderful, modular prosthetic.

It is lightweight (carbon fiber, kevlar and fabric layers with a resin that keeps it together and lets you wipe it down).  There's a sleeve that goes over her stub with an attachment pin.  The sleeve is all that holds it too her stub, but the latex-y material on the inside is enough to keep it gripped to her skin.

The prostethetic is the blue part (she picked "Elsa-colored butterflies" for her prosthetic fabric.  Years ago they used try to make them look like skin and it never really ends up looking natural so the thinking now is to make it an accessory and let it be its own thing, embracing it for what it is.)

She can put the whole thing on and off by herself.

The prosthetic two attachments that screw into the bottom of the prosthesis  - "the mushroom" she uses for tumbling and gymnastics and "the Lego hand" that is meant for riding her bicycle (the handlebar slips into the "Lego" looking part so she can steer.

Again, they used to try to make them something you'd wear all the time, but with the type of amputation she has, it never really works quite right and they learned that the limb would actually atrophy because the weight of the prosthetic and the bulk of the device would actual lead to fatigue and the child would end up using it less than they do the amputated limb.  Really, the limb doesn't stop her - she can do anything a regular kid does, light fight with a lightsaber....

...climb on the playground....

...fight like a pirate.... with her big brother...

But now she doesn't fall on her face at gymnastics and when she rides her bike, she can always turn the right way to make it back home.

Thank you, thank you, Shriner's!

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