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Monday, May 16, 2011

Update on Sami

Last Monday Sami had an appointment with her orthopedic surgeon.  For those new to my blog, in addition to EB, Sami was also born with congenital scoliosis.  Having EB has complicated treatment of her curve, as we were not able to use a brace to slow the progression of the curve.  She had her 1st surgery when she was 2 1/2.  But it didn't work and by the time she was 4 her curve had progressed to 85 degrees and was affecting her heart and lungs, so she had another surgery just after she turned 4 and the doctor fused the small portion of her spine that was curving.  He was able to get her curve back to 45 degrees!  It stayed there for over 4 years!  Until now:(  

The x-rays last week showed that it had not progressed to 77 degrees in less than 10 months.   Time for more surgery and we just found out today that it will be on July 18th.  After consulting with the Pulmonologist, it is best that we go the route of growing rods to allow her rib cage and chest cavity to grow more.  The other option is to do a complete fusion which would correct her curve forever but she'd always have a chest cavity the size of an 8 yr old:(   

The growing rods require surgery every 6 months to lengthen them and more if needed if one would break or come lose or she out grows them.  She most likely won't out grow them as this is to buy us time till she is 12 or 13 and stopped growing.  So she'll only need them for 3 years or so but will have to have a complete spinal surgery at that point.    The surgery is about 10 hours long and she'll be in the hospital for about a week. Her last surgery took about that long and she was out of the hospital in 6 days w/ no complications so hopefully this one will go just as well.  

I'll keep you all posted.


  1. Hi Sara: There is always something going on with that wonderful family of yours. So sorry that Sami will require surgery, but the summer is the best time. She will already be out of school for the summer and hopefully out of the hospital, God Speed.
    We will be praying for Sami and Joey. Take care my friend and please remember we are all praying for you guys. Keep the Faith. Love and Hugs Leah's Nana

  2. Well we will be praying that things go well for her!