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Friday, 18 January 2013

Smiler vs the unexpected


Smiler had a routine neuro appointment back in May 2009, where his consultant at BCH said that he thought he could see a curve in Smiler's spine ~ a fairly common issue in children with neurological conditions.  So, I did what so many of us do and know that we probably  shouldn't ~ I googled!



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Ever since Smiler was born, I've wanted to know as much as I can about anything to do with any of his conditions ~ knowledge is power I guess, and coming from a pretty academic background I was able to read fast and retain the info.  So I read up about scoliosis, and figured it was okay, we could deal with this.

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The appointment with the orthopedic surgeon was scheduled for July, Mr Manley had something else on, so Smiler and I went on the bus into town.  Met the consultant, who examined Smiler and sent us to x~ray, as expected.  All fine, all under control, everything okay.  We went back in, and he pulled the x~rays up on the screen, pointed out the curve I'd been expecting, and then said something unexpected.  "He does have scoliosis, but I'm rather more concerned about his hips."


His hips?  But I hadn't read up on hips!  Didn't he know the rules?

One hip was completely dislocated, and the other was mostly out.    The consultant said Smiler must have been in constant pain, with bone grinding against bone every time he stood up, or sat down, or shuffled in his chair ~ and in complete agony with every step he took.  He talked about surgery, breaking his pelvis, breaking his legs, pins, bone grafts, months in a full body plaster cast ~ to be honest, it all blurred a bit.

We went home, feeling utterly shell shocked, wincing for Smiler every time he shifted his weight.  I googled (I know, again.  I'm terrible), and I found Steps ~ fantastic charity, hugely supportive and active forums ~ we just wished we didn't need it.  Everything we read talked about treatment after diagnoses at six weeks, or maybe six months if you were unlucky.  The older the child, the more drastic the treatment.  The older the child, the less effective even the most drastic treatments were. Smiler had been diagnosed at seven years and ten months ~ he now had another massive battle ahead of him

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