Wednesday, June 6, 2012



Shriner's was worth the trip!

We met with two doctors -- a lower extremities specialist and a pediatric upper extremities specialist.  Both meetings were helpful, but the one with the upper extremities doc was fantastic!   

He was encouraging, straight-forward and explanatory.  He put to rest so many opinions and theories from other doctors, prosthetists, physical therapists and occupational therapists.  And he came highly recommended from several different sources.  Even a mother we met in the waiting room said she went back to New York where she lives, got a second opinion and that doctor said to go with this doctor's recommendations and treatment because he's the best in this field.

Here's the breakdown of what we've been told by other professionals compared to this doctor.  The varying positions are interesting to us but, frankly, this is just what we wanted to hear!

1.  They said his bearing his full body much weight on his little toe joints (because his ankle is fused with his foot in a pointed position and he walks on his toes) would damage those joints.  He said that we should just let him be.  He's adapting and doing well!  He said there's no way to know if that's true or not and he thinks it's too early to make too many decisions.  Especially in the way of doing surgeries that could effect his foot's hand-like functioning.

2.  They said we should have surgery on his hip in the next year.  He said James' hip looks just fine and needs to be left alone.

3.  They said James needs to be on his knees or standing as much as possible (and not in a sitting/scooting position so much) because his hips need to bear weight to grow strong and be able to function properly.  He said that's not true, that the hips just need to be used and he just needs to be mobile, but actually standing or in a kneeling position isn't imperative.

4.  They said we should fit James with a prosthetic immediately so he can get used to the sensation and weight of an arm on his right side eventhough prosthetics for children aren't terribly functional.  He said that used to be the approach.  He even said there used to be a saying, 'When they can sit, fit' so at about six months of age, they used to fit babies with prosthetics.  He said they're now finding that's not helpful.  And it'd be best to wait a while and see what James achieves as is.  There's plenty of time for that.

5.  There has been mention for months from a couple of folks about the idea of fitting James with some kind of brace/prosthetic kind of thing that would be fastened to his right leg giving him added strength and a couple more inches of height.  He agreed with this approach and said he thinks a 'foot in a foot' is the best way.  This is where his foot would be inserted into something else that has a foot or peg on it for him to stand with his hips level.  Sounds great!

For right now, we're going to continue to see what he can achieve with his little hand.  There's nothing to say that surgery won't be a viable option down the line, but he's not convinced yet that James won't be able to use both his fingers.  

We're coming back in six months.  No surgeries or major procedures at this time.  

We love this grace-filled-let's-see-how-he-does approach.  

Especially, when he's started doing this...

Look at these videos, y'all!  


(sorry this one's a little dark)

Our boy is standing all on his own!  He's going to walk by himself!  We thought it might never happen!

He amazes us.

We're thrilled with exactly where he is!

Thank you for your love and care.  

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