Well, now that I’ve given a quick overview of how we started dealing with this disease, I can now elaborate a bit more on some specifics for us. After finding out that my daughter had a 25ish degree curve on both the top and the bottom of the S (thoracic and lumbar) -the exact numbers I can’t remember, nor does it matter – we went off to the first specialist we were referred to. After two MRIs, one where she was conscious (partial spine) and one where she was put under anesthesia, it was determined that she didn’t have a cyst or tumor or anything else encroaching on her spine. It was plain and simple: idopathic scoliosis. It was then that I took the worst advice I was ever given – let’s “wait and see”.
Well, we waited 6 months and then the curve doubled. She was teetering just below 45% on both the thoracic and lumbar, and we were facing the edge of the cliff as to what is acceptable in a curve before surgery is recommended. Now, I should point out that my husband and I are very opposed to surgery. Just reading what I have about it makes me very leery – I just don’t want someone slicing into my child, plain and simple. I had done a lot of research about bracing, and that option didn’t sit well with me either. What kind of quality of life would my 6-year-old have in a rigid brace, where she couldn’t bend or move fully? It was then that I read about the Spinecor – a nice, flexible bracing system, which is new, but has experienced a lot of positive results. Fortunately, the University of Michigan medical system had an orthotist who administers the Spinecor, a very rare find! So, off we went to Ann Arbor to get her fitted, with a referral from our new Pediatric Orthopedic Surgeon at U of M. Her orthotist said she was barely big enough for the brace, but we managed to get it down to size. And, then, after she was all strapped in and my husband and I were educated on how to put the contraption on, I asked what I thought was a very simple question: “How is she supposed to go to the bathroom in this on her own?”. Now, my orthotist is one of the best there is – he truly cares about patient comfort and about their quality of life. But, he looked at me and honestly said that he had no idea. The Spinecor is so new, and most of the patients were old enough to take it on and off themselves, so he had never been faced with that question. Now, the brace did come with a nice little bodysuit, but it didn’t protect her delicate legs from the leg straps, and the snaps were too difficult for her to get undone and done up herself. It also had seams that ran down the back and front, into very uncomfortable places, and she just wanted the comfort of her nice cotton undies. So, what was I to do?
I ran home and popped on the internet. It seemed that I was one of many Moms who had this dilemma – the problem was that most of them had older kids in the brace. I located one helpful mother in Spain with a 6-year-old, but she said that their solution was simply to have her child go to the school nurse every time she needed to use the facilities. Well, this wouldn’t work for us for two reasons. First, we didn’t have a nurse, and, second, my daughter was shy and this was pretty embarrassing. All my life, I have been an inventor of solutions. If something needed to be done, I always figured out a way to do it. And, this was no exception. I pulled out my sewing machine, got some comfy material, ripped apart the bodysuit we had, and started to experiment. One day later I had a workable solution. It wasn’t pretty, but it worked, and it was comfortable, and she could use the bathroom with ease. ..a big sigh of relief from my husband and I as I set to work making a few more of these. I had no idea at the time that it would become more than that. I just wanted to make my child comfortable. But, I think God motivates us in ways we don’t understand to get results that he intends and expects, and this was no exception. More on that next time…