Thursday, May 5, 2011

A hip at risk

"Her hip is at risk," that is what we have been told about our little Sophie Kate's right hip (for my nurse friends SK has a 45% subluxation of her right hip). do I explain this one, how do I start from the beginning when I don't really know where the beginning is?

I feel as though I need to go back and reiterate something I have mentioned on here before...when I used to see children with special needs, before I had one of my own, I knew that their parents provided all their physical needs.  I knew they had to carry/lift them, feed them, bathe them, and on and on it goes.  What I didn't know is all the other problems and hardships that come with a non weight bearing child.  A child that has muscles so tight wherein bone is literally pulled out of socket, that is what has happened to my baby girl.  In layman's terms her right hip is 45% dislocated, it's not completely dislocated but it's halfway there.  Yes, we knew that this could be in SK's future, that a lot of children like her experience this same thing, I was just hoping it wouldn't happen this soon.  

We have now added another doctor to "Team SK," we met with a pediatric orthopedic doctor this week.  Our options are not clear cut and how could they possibly be when you consider her to be more than just an X-ray.  I really liked him and he has now become only the second doctor on her team to ask me to tell him about my daughter.  What I mean by that is that most of her doctors just jump in straight to the point of why we are there to see them.  This doctor took the time to find out about who she is, what she is able to do, and how she spends her days.  I love that.  He does recommend surgery, but we have options as to what type of surgery as well as the option to do nothing at this point.  After giving us his recommendation along with the pros and cons of all the scenarios, the decision was turned over to us.

See, here's the thing...she is so much more than the sum total of her diagnoses, it is a requirement that her doctors and therapists see her that way in order for them to be a part of her "team."  She is not to be seen as an X-ray to her orthopedist, a kidney stone to her Urologist, a G-tube to her surgeon or a seizure to her Neurologist.  She is a living breathing individual, she is a daughter, sister, cousin, granddaughter and friend.  She is a member of a family who loves her.  A life in which she is able to give and receive love.

Let me tell you that SK's hip is not the only thing at risk here, there is a risk with surgery.  Our family is at risk due to the recovery that some of these options will require, like SK not being able to be in certain positions for a period of time, which would make her a lot less mobile than we have become accustomed to.  There is a risk that her hip will become dislocated no matter what we choose to do, which leads to my sanity being at risk, big time.  

There has been so much discussed and thrown at us that it is becoming a jumbled mess in my head.  Please pray for us as we seek God's wisdom in moving forward, pray for clarity, pray for a clear answer as to the path we should take here.  There is no easy answer, no matter which route we take.  My girl has been on a good run for a while now, I cannot bear it if her smiles disappear.

Thank you for joining us in prayer. 


Michelle said...

Amye Jo,

My prayers are with you, Sophie Kate, and your family.

We are potentially dealing with the same thing with our daughter, so I undertand.



vlmaples said...

I lost your email, but please drop me a line about interim solutions that might help you avoid surgery. Two of my three kids with hip problems avoided surgery with night bracing and better standing practices.

Amye Jo said...

My email is

The orthopedist wants to do surgery but not the bad bone surgery, he wants to do a soft tissue surgery where he cuts some tendons. I don't know still sounds scary and the recovery and pain scares me.

We are seeing a chiropracter right now, so I'll let y'all know how that goes. Also we have an abductor pillow that we were just given so we'll start using that too. I'll let you know if we find something to be beneficial w/o surgery.