Bilateral Proximal Femoral Osteomy

In June we went to see Dr. Narotam with UNC Pediatric Orthopedics to schedule another round of botox in Clara's hips, and found out that she would need bilateral hip surgery instead. One of Clara's hips is 50% out of socket and the other one is about 20%. This hip problem is from the muscle imbalance caused by Clara's spasticity from her cerebral palsy. Her tight adductor muscles have pulled the femur producing a rotation of the hip and then the ball has slowly moving out of the socket. The name of her surgery is called a Bilateral Proximal Femoral Osteomy.

It was a Friday, and I didn't even pack Clara lunch because I knew this would be a quick visit to Chapel Hill. I  knew it wasn't good news when the Dr. Narotam came back in the room, with a lap top to show me the x ray. Good news (not really :) )the hip surgeon could squeeze Clara and I in, for a talk. I remember she was all out of sorts because at this point was lunch time and she was hungry,  and all I could think was don't cry Courtney..don't cry. Four hours later we left, and I was a wreck and have been every since. 

Her surgery will be this coming Monday July 23rd. There is absolutely no part of me that wants her to go through it, and although  I try to be really brave I am scared.. I am really scared. Bone cuts, metal plates and screws placed in her hips. 6-12 week recovery at home in a cast or brace. up to a year to get back to baseline, physically. A lot of pain for along time, with pain meds for a long time. 

This will be her hardest yet, and my girl has been through some really hard stuff.

I have thought about cancelling the surgery several times, but in the end Clara is going to have to have it. I hate Cerebral Palsy.

So in my month long search for information, I have spoken to some wonderful moms, read their facebook pages, blogs, about their child's story with this surgery. I have learned a lot, maybe to much, given some good advice, and really have been encouraged in a sense of "you are not alone"....it will be hard but Clara will get through it.

In the days, weeks, months ahead I will be updating her progress, highs and lows of her day on this blog. I do this to keep everyone in the loop but also to share her story to another family, that will go through the same thing.

Having a child with special needs can be very lonely, and I say that not for anyone to feel sorry for us or her. For us it’s so important to share our stories. To encourage others .......to be connected. To find hope in whatever is going on, hard or easy, good or bad. To remind each other to celebrate and hold on tight.

So I signed into blogger for the first time in months...to share again another piece of Clara's story and to also share the goodness of God. That although the next several months are really going to be hard, he tells me all the time "Girl look at what I gave you....and look at how I have met you all every step of the way for her". He is the God of the hills and valleys. 

I am thankful that we had a wonderful vacation together, before all of this.  It was our best one yet. Clara got some good walking time in with her gait trainer. It will be a long while before she will be able to do anything like that.  Weeks, before she can weight bare. Months before she can walk again.

 Thank you for reading and for loving Clara, Jason, Madeline and myself. Please be praying for her on July 23rd, and for the next couple of months.