Journey

Rory has increasingly less control of his legs.  He used to be able to take one or two unsteady steps between supports but it is now a very dangerous manoeuvre.  Sean and I have told Rory over and over again that he must have support at all times but he continues to do things which put him at risk.  Trying to step one evening he had a fall in his bedroom and landed heavily on this shoulder.  Thankfully an x-ray showed nothing is broken but he is very sore and his movement is restricted.  A week ago Rory attended a multi-disciplinary rehabilitation appointment.  All the specialists working to maintain his functionality attended; OT Dianne, Physio Josh, Dane from Next Level Fitness, Phillipa from Pilates and Steve a Physio who specialises in musculoskeletal issues.  It was very valuable to have everyone together.  In the absence of a single cause it is most likely Rory has posture mediated back pain.  It is caused by the way he sits, stands and moves.  The reduced ability to control his upper and lower limbs means he is also less able to control his shoulders and hips.  This causes locking up of his spine.  The rehab going forward consists of exercises to free up his spine.  This will be worked on by everyone involved.  The goals is to keep Rory as independently functional as possible for as long as possible.  It looks like the Mobility van will arrive before the end of the month which will make transporting Rory and his gear so much easier for Sean and I and his support carers.  Our normal Friday support carer Ailie has been away so Rory had a relief carer for three weeks. 

Daschund Bear continues to settle in to our whanau.  He gets excited when Rory’s bedroom door is opened in the morning.  He runs down the hall and launches himself onto the bed, burrowing under the covers to wake Rory up. 

This weekend we had our annual combined birthday dinner for Poppa Honnor (Nana brought his photo), Rory and Uncle Guy.  Sacha was up from Picton.  It was enjoyable being together as a family.