We appear to be back on track ....

So the last month or so has involved a lot of 'waiting.'  Waiting to see if her elbow would continue to get better, or start to deteriorate again.  Waiting to find out if she was anaemic, and if that would put her spinal surgery back even further.  Waiting to find out if the extensive course of antibiotics she was on was CAUSING her anaemia.  Waiting for one doctor after another called, to discuss their angle of the spinal surgery, and how each of their specialties would affect the pre-op period, or the post-op period.  And waiting to find out when everyone would agree that she was well enough to proceed the operation.  

We now have a new date (I've avoided posting up until now, for fear that I would somehow 'jinx' us, and that she'd get ill again, just before the operation was due to go ahead.  But so far, things seem to have settled down.  Her spinal fusion operation will now go ahead on the 25th of May - 2 weeks today - and she will be put into her body cast whilst still under the General Anaesthetic, so she will wake up with it already on.  We obviously have no idea how she's going to react to it.  It's one thing for a 6 year old to have to understand why she has a body cast on, or the ramifications of not having it on.  It's quite another, for a child who doesn't feel pain; has no idea there's anything wrong with her, and doesn't understand why something needs to be 'fixed' when "it doesn't feel broken."  *sigh*  

I'm dreading the surgery, and wondering what I'm going to do with myself for the 3-4 hours she is in theatre, to take my mind off it.  But I'm dreading the body cast even more!  For those of you who don't already know:  having a cast on a child who doesn't feel pain is a hazardous experience.  Not only do they not take care when they have one on, they don't feel any discomfort with it.  So they will continue to do everyday activities without trying to "take it easy," and they have no idea if the cast is rubbing on their skin/bones etc.  Most children with CIP (Congenital Insensitivity to Pain) come out of a cast with more issues than they went into it with, but sadly it just has to go ahead.  Her spine needs to be fused together, so that it does not separate further, and potentially paralyse her.  In the time it takes for her cast to remove, her muscles will waste so quickly, that she will struggle to walk again, even once it is removed.  When she broke her L leg, it took several months for her to regain the lost muscle, and walk normally again (for her!), and it was only on for 7 weeks.  This cast will be around her middle, so she will lose what little muscle/tone she has supporting her core, but the immobilisation period will also allow her leg muscles to atrophy.  :(  

The next 6 months or so will be pretty rough for her, and (most likely) for me too.  But we will get through it, as we have made it through everything else she's had to endure in her short life.  She is so accepting of everything she has to go through, bless her, and rarely complains about what is being done to her "this time." I hope that next time I update she will have had her operation, be in her cast, and that we're both coping really well with the changes to our lives.  Here's hoping :-)