Journey

The trial for weekend support care, provided by Empower You, has been a success for Rory and our family.  He has spent two Sunday’s out in the community and cooking at home with Anthea.  Sean and I have enjoyed two wonderful days tramping with Colt and Molly at Parininihi and Matapeka Falls.  We are all happy about this result. 

Rory has been seen at Smart Rehab for his back pain.  The cerebellar ataxia means he has reduced peripheral control i.e. uncoordinated limb movement, unsteady gait and difficulty judging distance.  He is compensating for this by locking his axial skeleton (head, neck and torso) when walking. He is unconsciously trying to create a stable base for support so he can stay upright and not fall.  The Physiotherapist has recommended resetting exercises and potentially acupuncture to try and reduce or alleviate the pain.   

The carbon fibre rollator/walker has broken.  Rory has put it through its paces for three years.  We are awaiting on an urgent replacement.  For a few days Rory had a cold which is always accompanied by a cough which takes longer to resolve.  Rory being unwell always makes me uneasy.  We heard from his ENT surgeon Dr Nick at Auckland Hospital this week.  They have advised Rory should have an annual CT scan for another 5 years (until 10 years post remission).  We need to remain vigilant.    

Rory spent his last morning of the year at NP Men Shed with Peter.  They made wooden heart decorations for the Christmas tree.  Rory has started doing puzzles to pass the time at home.  He can complete a 100 piece puzzle in a single sitting but 300 piece puzzles are taking him several days.

Sean and I attended Junior prize-giving at Inglewood High School and Colt received his Year 10 Junior Diploma with Distinction.  We were very proud of him.  Colt caused minor drama in the house this month.  He came home from a Rippa rugby tournament in Hawera with a sore, swollen and bruised left thumb.  He had scored a try and landed on it.  I was tempted to apply mothers only first aid but the following morning it still didn’t look normal.  I took him to the emergency GP who ordered an x-ray.  He has broken the bone in his thumb and it is misaligned.  He was put in a temporary cast which was replaced yesterday by a fibreglass cast which has to stay on for five weeks.  Colt is not happy about not being able to swim.  The specialist advised against a water proof cast due to potential skin damage and infection.  It was an unfortunate way to end the school year for Colt as he missed out on junior activities week.  He had signed up for physical activities and was under strict instructions not to knock his thumb in the temporary cast. 

Happy 26^th birthday Sam.  We love you to the moon and back xox