scoliosis

Sometimes I'm not the best mom ever. From the time that Shawnie was little I always told her, "Sit up straight!" "If you don't sit up straight, you'll have to get rods in your back!" "Do you want to end up with rods in your back?"
Well, on December 16, 2011, Shawnie will be admitted to Primary Children's Hospital for an 8 hour procedure to have rods put in her back.  Come to find out, because of her diagnosis, it was inevitable and if I had been any kind of educated, informed, or thoughtful, this whole process would have been a lot easier for all of us. 
Three years ago, my sweet little petite had an enormous growth spurt and all of a sudden, she couldn't sit up anymore, she just kept folding over.  We talked to her PT about it and he gave us some exercises to try, we did, but it was obvious to him and us that something was not right.  At her next appointment with her orthopedic doctor, Stephen Santora, we mentioned it and he (very casually) said, "It looks like it's time to put the rods in her back." Shawnie immediately flew out of the room sobbing and crying with the poor stunned doctor looking on, somewhat bewildered.  
I have to admit, I wanted to take off right behind her, I felt like we had done everything in the world that we could have done to prevent it from happening.  The doctor very carefully explained to my horrified face that it happens to every kid with her condition, we were just very lucky to hold it off as long as we had.  He told us that if she wasn't ready for it (obviously we must have made that point too clear...) that he would talk to one of his colleagues, Jacques L. D’Astous, who specializes in spine about a risser cast that they often use on little kids to straighten the spine. They hadn't ever done it on a child as old as Shawnie, but after discussing it felt like it would be worth it if we could hold her off from the spine surgery until she quit growing.  We talked over the pro's and cons of both options, and Shawnie had dealt with the nastiest of casts multiple times so she jumped right on for the casting. (ok, not really, but it sounded better to her than the alternative.)  The downfall, though, was that she would wear this cast pretty much her entire 5th grade school year.  3 months in one, cut it off, 3 months again in another.  Then she would go into a brace, pretty much a plastic corset until she either needed casted again or we decided the rods weren't so bad.
So she did it. And it worked.  X-rays showed that her curve was straightened from 90 degrees to just over 40.  For 6 months, no real showers, no swimming, no bending, and lots of discomfort and itching.  This was definitely not a high point in her life. 

cast #1
Notice how thoughtful Dr. D'Astous was with the color choices?  Even a stylish pink belt!

cast #2

 The brace was like heaven when we got it, even though it was big and bulky and uncomfortable, at least it was removable!!  After a year or so, she outgrew the first brace and because the casting had left such a negative effect on her, they decided to try fitting for another brace instead of another round of casting.  Our favorite orthotist was able to stretch and mold her and make a new brace that gave almost as much correction as the casting had, so we were able to avoid the second round of casting.  You could have no idea the relief we felt after finding that out. We LOVE Rich!  He's our man! She has worn that brace, a little bigger and bulkier than the first, for the last several months, but her body has really been fighting against it and after consulting with the doctor, we decided together that it was time to accept reality and schedule the surgery.
Most of her surgeries have been at Shriner's Hospital for children.  It is the most incredible place in the world, small, comfortable, personable, not at all like your typical hospital.  We love the doctors, nurses, child life specialists, therapists, janitors, and even the cooks, and feel like old friends when we are there.  We were disappointed to find out that the anesthesiologists at Shriners were intimidated by Shawnie's complications in regards to this surgery and recommended the procedure be done at Primary Children's, but they know her well and we trust their judgement and it has ended up being quite a blessing.  Her doctor will still be able to perform the procedure, and he was able to fit it in much sooner than if it had been done at Shriners. He also, being the thoughtful guy that he is, scheduled her for right now so that 3 of the 6 weeks that she would be out of school will get eaten up by Christmas break.
Well, that's the long story of how we got to this point.  This article has pretty much all the information we have on the scoliosis surgery, minus the complications that come with the muscular dystrophy.  We trust her doctor and always have, since the day she was born (literally). He will take good care of her and she will be strong and use that courageous spirit that the Lord has blessed her with.
We're so grateful for good friends who have experienced this same procedure at different points in their lives who give us advice and information and keep us calm.  They have definitely set the example and given us strength.