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So, the last few days have been a little concerning.  Ben’s medical team noticed yesterday that he seemed to be much weaker on his left side than his right.  This seemed to be a decline from the weekend.  Because his surgery was done on his spine, it is important to keep a close eye on things like this.  Beyond his weakness, it was obvious that his head appeared to be sitting quite crookedly on his shoulders, which as a professional worrier caused me no small amount of concern.  There was no real movement in his head and neck.  Anyways, there was no hesitation from our team to order xrays and CTs to quickly rule out surgical problems and to try to determine the cause.

The good news is that Ben’s xrays and CTs look really good – straight and awesome!  There is a small possibility that there could be a screw a microbit (yeah…that’s a word) out of place, but his symptoms are not really consistent with this possibility at this time.  So, we think that maybe the problem is that we have a little 6 year old boy who had a very grown up surgery and hasn’t used his neck in 7 weeks.  It’s fairly probable that he could be having muscle spasms and all kinds of tighness and soreness as a result of this – not to mention that he has been crooked for 6 years, so that is his normal way of holding himself.

So, we are now using a variety of strategies to get him through these minor complications.  First off – physio!  We are working hard at exercising and trying to move forward a little bit each day.  We are doing our best to strengthen all his muscles and make sure that his “lazy hand” does his share of the work too.  Right now when I get him to grab my fingers and squeeze them – his right hand is weaker than it was a few weeks ago because he is weaker overall post-surgery – I can feel a fair squeeze.  His left hand is far weaker than that, and it is sometimes difficult to even determine a squeeze.  OT is also working hard to give us the tools we need to get back on track – we received a new smaller Ben size wheelchair yesterday with a back that can recline.  This is a start for us, but Ben still has a very difficult time sitting up – even with the recline.  They have also supplied us with a small walker and have set up an entirely unique non-invasive traction on his bed.  Ben seems to like the traction at first, but he is having a difficult time maintaining it for long periods of time.  I’m not sure why – it might be that it is stretching the muscles on his neck and they spasm or hurt over time.  We’ll try to figure that out more tomorrow.  Everyone here is working on solutions to get Ben up and moving, and he is definitely doing his part too.  He does walk a little bit now; although it is difficult for him.  Our physio hides racecars within 20 feet of our hospital room and Ben walks (with his walker and some head support) to find them and then tries to sit and test them to see which is the fastest.  We will continue to work hard and make small advances whenever we can.  This is the tough part now because everything hurts!