Sunday, February 7, 2016

our newest journey

And we're off on a new journey!

A little back story may be helpful...  

Our son, James, who we adopted from China almost four years ago when he was two years old, was born missing upper extremities; he has a partial arm/hand on the left side and no arm on the right side.  He was also born with fibular hemimelia (no fibula -- smaller of the shin bones) on his right leg.  It's kind of ironic because his medical records from China didn't mention him having issues with his leg at all.  Once we saw photos, we thought maybe he had a clubbed foot and figured we'd have it fixed and he'd run off and play!

It's turned out that James' greatest challenge is his missing fibula.  His lack of arms is virtually a non-issue.  He's a maniac!  :)

After more than three years of doctors' visits, a couple at Shriner's in Philadelphia and a couple at the Rubin Institute for Orthopedics in Baltimore, we decided in June that the best path for James was not amputation of his leg (which was recommended by some), but rather limb lengthening.  Part of the Rubin Institute is the International Center for Limb Lengthening.  We're so grateful to be only a three-hour's drive from there.  

This past week, we met with a team of surgeons, nurses and a PA in Baltimore and came up with a plan.  Finally!  We have a plan!  

Here are some shots of Jimmy Jam!  He loves to head out on a road trip -- especially when he gets Mommy and Daddy to himself!  And he had his new Build-a-Bear named Big Hugs who will accompany him through all his surgeries.

Headed in to meet with Dr. Herzenberg (Tuesday, February 2, 2016)

In preparation for his first limb lengthening, he will have surgery on March 8th.  This surgery will basically reconstruct his ankle (the 'Super Ankle' procedure) and knee (inserting '8 Plates').  Because the top of the fibula contributes to the knee and the bottom contributes to the ankle, James has an almost fused ankle and a patella (knee cap) that moves all over the place.  

This is a model of the external fixator used to stabilize and lengthen the bone after limb lengthening surgery

On Wednesday morning, before heading home, we were able to take a tour of the hospital where he will have his surgery and spend a lot of time over the next year.   

His drawing on the white paper table cloth at dinner.  It's him and us!  :)

A few pre-surgery photos

The hydro-therapy pool where he'll spend an hour/day after his limb lengthening surgery.

He was being such a trooper!  

Headed to the Children's Hospital to see the recovery unit (no photos allowed up there)

Here's a video that shows limb lengthening. 

After his surgery in March, he will be in a cast for six weeks.  We will be in Baltimore for the week of March 7th -- hopefully coming home that Saturday or Sunday. 

He's actually excited.  Only this kid!  :) 


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