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Rory Gardiner's Webpage

24, Nov, 2009

Tuesday 24th November 2009


 

I returned to work at Whangarei District Council today and it was a foreign experience to put on lady-like clothes and shoes, and spend all day working in an office.  In some respects it was like the past eight months hadn't happened and it was just another day, but in others it was like I had moved on and was in a completely different space.  It was good to put my work affairs in order.  I have had the odd day in the office since Rory's diagnosis but it was always to play catch up.  Today I cleared the back log, and will now be able to focus on the SoE report on Biodiversity WDC needs me to finish.  I plan on working one day per week until Christmas.  Sean will take the boys on these days.  It was lovely our team again.  I have missed their company, the discussions, and the good natured banter.  One thing which was hard was repeating myself over and again about how Rory is, and where to from here.  So many people are interested and care about how he is getting on.  The down side of being so open about what he, and we, have been through is having others look into our lives.  But having said that we couldn't have done without the wonderful support people have provided so I wouldn't change a thing.

Rory and Sam had a day with Sean today.  They went to the Child Health Clinic at Whangarei Hospital so Rory could get a dressing change.  He has a special dressing called Polyskin as he gets a rash and itching with all other types of dressings.  They didn't have any in stock yesterday, and I had forgotten my stash, so it meant a repeat visit to the Hospital today.  The boys went and checked out Adventure Forest, the aerial rope course at Glenbervie (www.adventureforest.co.nz) we plan to take the boys on for Sam's birthday next week.  They drove out to Tutukaka marina to fish off the rocks.  Sam got a few bites but it was a bit windy so they headed home.  Sean completed Rory's NDT program session, and the boys curled up with a bowl of popcorn and The Tale of Despereaux on DVD mid-afternoon. 

Yesterday (Monday) Rory had the first session of his NDT program.  He is struggling with commando crawling as the lumens from the Hickman line in his chest get in the way and make lying on his tummy difficult, and he struggles to co-ordinate the movement.  He can co-ordinate the movement crawling on his hands and knees if he goes slowly, but it hurts his neck muscles which are weak from sitting up in bed lying against a pillow for months.  When we spin him on the office chair for 30 seconds and then stop his pupils move rapidly from side to side and it takes a while for this to settle down.  For the left handed activity he drew a picture with his left hand, and we played hand games such as paper scissors rock, and this little piggy went to market, we put our right hands behind our backs. 

We headed into town and Rory got a finger prick blood test.  His white blood count had fallen to 4.2, and his Neutophils to 2.6, but they are still at acceptable levels.  His platelets continue to come up on their own (56), but his haemoglobin has slipped a little to 87.  He is still above the level for a transfusion (80) but we have to watch him for fatigue and paleness.  We visited the Child Health Clinic where nurses Layoni and Taryn changed the Heparin in his lines, and his plugs.  We met with the Paediatrician who had misdiagnosed Rory in March.  He seemed embarrassed.  It was hard for me.  I thought I would give him a piece of my mind, I did feel so angry, but all I felt yesterday was sad.