Thursday, April 5, 2012

big decisions


Our appointment with the orthopedic surgeon was good in that it gave us a start into figuring out what's going on with James and what needs to be done.

Now the question becomes, 'What needs to be done?'

Ya know, what actually needs to be addressed?

Because, frankly, for us, not everything that James has going on needs to be addressed.  He is who he is.  Yet, as his parents, we want to figure out if there are things we should address for his future to be as bright as possible.  We want him to have as much independence as possible because we believe a person's ability to be independent in life can directly correlate with the joy, peace and sense of purpose that person has.  So, our goal for James is that he will be independent and able to search (and find!) what God has for him.

Let's get to the knitty gritty.

James' arm/hand remains a bit of a mystery.  The doctor thought she felt an elbow, but then his x-rays didn't show a joint there.  Just an upper arm bone to two finger bones.  Big question marks, I know.  However, she did mention that it's possible for their to be a cartilage joint there (as is often the case with young children) that wouldn't show up on x-ray, but would show up on an MRI.  But there's no rush to get an MRI done on his arm right now.  We're going to start some occupational therapy and see what can be accomplished that way first.  He really can't manipulate things with his fingers.  He can't pinch and he can't bend or wrap his longer finger around things like a pencil, crayon or utensil.  OT could be pretty cool.

Now to James' legs.

So we've learned that James is missing the fibula in his right leg.  He doesn't actually have a club foot as was suspected.  Apparently the top of the fibula contributes to the knee and the bottom of the fibula contributes to the ankle explaining why his knee and ankle don't function right and why his foot turns in.  He cannot flex his ankle into a 90 degree position allowing him to plant his foot flat on the floor.  In addition to this, his right leg is a couple of inches shorter than his left.  The doctor was able to project his current measurements to maturity (approximately 18 years of age) and said she expects the discrepancy in the lengths of his legs to be about 6" by that time.  That's pretty drastic.

What does all this mean?

Bone lengthening?  Maybe.

Reconstructive surgeries?  Maybe.

Amputation?  Uh, very unlikely in our book.

Believe it or not, amputation of his leg was mentioned as one of the two approaches to situations like his.   And what may be even more surprising is that we were completely calm and at peace throughout the entire conversation with the doctor.  God was in that very room with us.  He allowed us to have this difficult conversation around James' options without falling apart or doubting or questioning.  Just listening.

She explained that situations like these are extremely rare.  She didn't recommend a single surgeon in our area.  Or in our state, for that matter.  In fact, not even the surrounding states!  She didn't even recommend herself!

She mentioned the amputation route because she says the surgery/bone lengthening route could be a life-long process for James.  But what we pointed out to her immediately is that James uses his feet like hands.  And he doesn't have hands!  So taking away one of his feet could be devastating.

I asked her point-blank what she would do if this were her child.

She said gently, 'I would go the amputation route.'

That stung a little.  I was surprised.

But this is the coolest thing...

The next day (Wednesday afternoon), the phone rings and it's her.  She says that she's been thinking a lot about James and our meeting the day before.  She says she knows she mentioned that amputation is often a consideration in cases where the limb has a pretty serious deformity.  She says she knows she even said she'd choose that option if it were her own child.  She then explains that after further thinking she realized that wasn't true.  She said because James does not have upper extremities amputation really isn't a great option for him.

Wanna know what I love?

I love that James sticks with people.

I love that when you meet him, he's with you.

(Remember what I said in the last post about how God doesn't make mistakes?)

I love that her advice didn't sit well with her.

I love that she was willing to call us and admit that.

Now that's a great doctor.  No, that's a great person.  I'm grateful to know she has that capacity.

I also asked her what the future looks like (in her opinion) for James if we choose to do nothing.  Will he be a wheelchair user for life?  She said she thinks so because he doesn't have arms to use crutches and the difference in the lengths of his legs would be so great that he wouldn't be able to walk.


Never in my life have I felt for one second at peace about the idea of having a child who is confined to a wheelchair for life.

Until now.  

Only God.

Only the equipping power of the Holy Spirit.

Only the redemptive love of Jesus Christ.

I don't know what else to say.

We love this boy more every day.

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