Wednesday, March 11, 2015

the most overdue update ever...

I thought I'd forgotten how to login here!

Well, hellooooo!  :)

I don't even know where to begin.

Well, yes I do.

I must start with an update on Christine.

Clearly, Christmas came and went.  And she is not home.  :(

We are so very close.  We should have our I-800 (immigration approval) this week.  Then there's one final filing to do that takes about 2-3 weeks to process and then we start planning to travel.

Here's a sneak peak at her bedroom.  :)

This desk was Christine's Christmas gift from Mimi and Pappy.

Avery tests it out.  :)

Life has been especially full lately.  Not only are we completing Christine's adoption and very much looking forward to our trip to the Philippines to get her, but we've also entered into a new season with James.  For two reasons...  

I've had lots of conversations and a few meetings with our county school system about him beginning kindergarten in the fall.  The child is so excited.  And we're so excited for him!  He just absolutely adores preschool and loved Randolph Elementary School when we visited yesterday.  I'm so impressed with the heart of each of the women I've met with so far.  They are open-minded, loving and accepting of James.  We've had conversations around his ability to navigate independently through his day: climb off and on the bus, pull out and sit in his chair, feed himself lunch, use the bathroom, write and do his schoolwork, etc.  We know he'll do just great!  And the wonderful thing is that the school's occupational therapist, physical therapist, nurse and even a kindergarten teacher were so excited to watch him succeed.  Not that I ever really doubted that sending him to school was the right decision, but our experience so far is really affirming that for us.  

The second reason things have been full (both in our minds and on our schedules) is that we took James to Shriner's in Philadelphia last week.  It's been over two years since we visited last (click here if you want to read about that visit).  It was time to go back and follow up on things.

You may or may not remember that we took James there just a few months after bringing him home from China.  He wasn't standing or walking -- in fact, he stood for the first time on that trip in the middle of our hotel room.  The doctors pretty much told us to just let James adjust and adapt to his new surroundings/life and bring him back in a couple of years.  Well, for a variety of reasons, we felt it was time to return.  We'd been feeling nudged to seriously consider doing something with his leg to help him have more mobility and stability.  One of the nudges was James' preschool teacher telling us about an 8-year-old boy on the 'Ellen' show that reminded her of James.  Take a gander...

Isn't he somethin'?

For some time, James has been talking about the sports he's going to play and really trying to keep up with his brothers and friends in the neighborhood.  He's out there running around in our yard, he's down by the creek and in the woods playing 'Hunger Games' (lovely) with his siblings, and he's playing in the snow.  

But he stumbles a lot.  And he falls sometimes.  He's worn out/broken a couple of his AFOs (artificial foot orthotic).  The idea of him having a strong reliable prosthetic that he can fully run in was becoming more appealing to us and we were becoming less afraid of at least having the conversation.  We realized we needed to stop avoiding the conversation out of our own fear of what we might discover.

Toes transplanted to fingers?  A more functioning hand?  Running, jumping, playing sports?  Yes, yes and yes.  It all sounded great to us and to our prosthetist and orthopedic surgeon in Richmond.    

It was time for more information, so off to Shriner's we went...

The doctors there are great.  They took notes, x-rays and...  

Yep, he had himself a little photo shoot.  As if he didn't already feel like a superstar being on a trip alone with Mommy and Daddy, staying the night with Aunt Karen and Uncle JP in DC...

...and staying in a hotel.  :)

Oh, and let's not forget that we splurged and let him play the gaming device at Chili's during dinner.

Mommy and Daddy had a lot to talk about as we ate and, frankly, Mommy splurged too with two glasses of wine at dinner and chocolate back at the hotel room (can you say, 'stress eater'?  Oye).  Five hours at Shriner's left me feeling like my head -- and heart! -- was going to explode!  Let me explain...

We had marched ourselves up there thinking we knew exactly what we were going to ask (and we asked it!) and thought we pretty much knew what we were going to hear (and we heard it!...until...).  

The upper extremity doctors (and there was a team that stood around us nodding) completely endorsed the idea of transplanting two of his toes to his hand, performing the amputation and fitting him with a couple of great prosthetics.  Oddly, we were kind of coming to peace with this whole crazy thing.  

Then we moved to meet with the lower extremity folks and they launched straight into bone lengthening (also known as limb lengthening).  

It was like a record scratch.


I actually stopped the doctor and explained that we were actually there to discuss amputation.  He was very kind and gracious and said, 'Oh, okay.  What were you thinking?'  I explained and he heard us out, but quickly explained the bone lengthening process and used phrases like, 'He has a good leg,' and 'His foot's in a great position,' and 'His knee's strong.'  What?  These are not things we'd ever heard before about James' little leg that's 2" shorter than his left leg.  Look at the photo shoot above, for goodness sake.  

We were intrigued, but the gruesomeness and arduous process involved seemed beyond manageable.  But James would get to keep his leg -- which means he would get to keep his foot!  A foot that, he uses far less than he used to, he still uses.  And he wouldn't have to use prosthetics for the rest of his life (getting them off and on, caring for them and his 'nub', etc).

So, here we are.  

In May (assuming we're not in the Philippines!), we'll likely take James to see another doctor in Florida for a second opinion.  He came highly recommended by several people and, unlike the Shriner's doctor, he isn't booked for a year!  I kid you not, James could not get in to have the surgery done at Shriner's for at least a year.  

It feels like we're on the right path.  The path to being able to give James his best shot at independence and being able to stand before him one day and assure him that we did our very best for him as his parents.  Hopefully he'll believe it.  :) 

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