Archive for October, 2014

Different Like Me is (finally) here!

Thursday, October 2nd, 2014

It was a two-year process, but Different Like Me is finally published!

pages 1 and 2

pages 3 and 4 - Copy

pages 15 and 16


To find out about that trip you can order a copy from Amazon here. All proceeds go to support orphans with arthrogryposis who need adopted, and other kids with arthrogryposis (not my own) who have equipment needs.

What’s one more?

Thursday, October 2nd, 2014

I haven’t been blogging a ton lately, and many of you know why. We have a third child with arthrogryposis in the house these days thanks to the foster care system. And while I’d love to take a million pictures of this sweet child’s face and tell you the amazing (unplanned) story of how she became a cuddly and loud and goofy and precious part of our family, unfortunately I’m prevented by privacy rules as she’s still a ward of the state. Going from one child with AMC to two had it’s difficulties, but going from two to three has been another story entirely. I have no free time anymore thanks to a casting and splinting schedule that has tripled. My blog has grown cobwebs. I forget what my husband looks like. And going grocery shopping or to Miracle League or to events involves a lot more logistics now.

And guys, we got a minivan. This just got real.

But it’s worth it! Love these kids! They are all so smart! And stinkers! Ohhhhhh I have stories. :)


Birthday girl, Laelia, walking without braces!

Thursday, October 2nd, 2014

First off, HAPPY BIRTHDAY LAELIA!!! She turns 7 years old tomorrow! Here’s the birthday video I did for her last year documenting the years it took her to learn to walk.

Well now we’re doing this walking thing even better!!!

I need to preface these million videos with a few comments. First off, we didn’t think Laelia would ever be able to take steps without her braces. And there was much doubt in the medical community if she would ever take a single step, so ambulating with braces is still a miracle. But without braces? I didn’t really think it was possible. There’s only so many years of trying and failing before you assume she’s just missing those muscles. My hope, truthfully, was in some not-yet invented robotic.

Laelia largely directs her own physical therapy now, so when she showed a bit of trepidatious interest in walking with her KAFOs (full leg braces) unlocked at the knees we of course tried it. And lo and behold she got pretty good at it! Then we decided to try GRAFOs which are ground-reaction AFOs that cover much less of her legs requiring her to do a lot more work. (Dr. vanBosse in Philly had suggested these.) This led to the four month battle with our insurance that still haunts me, but we got them! She was super wobbly her first try in the physical therpist’s office, but she did great!

Next came walking in GRAFOs all by herself using crutches. “Stand back, Mom!”

Then getting so good at it she could go down the ramp and lift her crutches off the ground!

Then one day during physical therapy at home she just shed those crutches all together!

A few days later she was walking like she’d been in GRAFOs all her life!

So we decided, why not? Let’s try walking with NO BRACES! The crutches came back out for balance and she did it!

Then we moved up to walking in just her socks! Not even shoes on!

Then two steps all by herself without a walker!

Then four!!!!!!!!

Then she just held my hand and walked all over the place in nothing but socks! (Had to cover up our foster kid’s face in this one.)

And finally just once (she hasn’t been able to do it since, mostly because of her leg length difference) she walked across the room in nothing but socks while holding on to NOTHING.
(Sorry about the white box, but it’s the only video I have!)

We have so much hope for the future! I think she’ll be walking even better as she gets older! So exciting!!!