Rory Gardiner's Webpage

29, Nov, 2009

Sunday 29th November 2009


It's amazing how difficult it is to set aside half an hour every day for Rory's therapy programme.  It needs to be calm, relaxed unhurried time so he can concentrate and we can complete all the activities.  Life has a habit of getting in the way so I am learning to make the programme a priority, and do it earlier in the day rather than put it off till later.  Rory enjoys the tactile stimulation on his left side, who wouldn't!  We have utilised massage, patting, and tapping with a plastic cooking whisk.  His crawling is improving, although he can only last for a couple of minutes.  He tires easily and his neck muscles hurt, particularly on the left side where the shunt cable runs down into his chest under the skin.  He is only occasionally losing co-ordination.  He takes the spinning on the chair well, and enjoys the left handed activities.  Over the last three days we have made patterns with the tantrix puzzle pieces, played hyper-dash, and built with the lego. 

Rory's weight is still sliding downwards a little.  He is 700g lighter than when we brought him home 11 days ago, although his weight has been stable for three days (22.2kg).  He is eating as much as he can but not large volumes.  We are feeding him regularly, and including high fat foods.  I have emailed Amy the Dietician to enquire about supplements to boost his calorie intake, and balance his nutritional.  I am reluctant to consider a return to the ng tube as he has done so well, and is on the path to recovery and normalcy.

We have been managing to fill in our time easily.  I am slowly ticking off the things on my to do list.  On Friday we went to the movies to see Cloudy with a chance of meatballs with some vouchers the Child Cancer Foundation had given us, and had our passport photos taken (they all look like police mug shots!).  Yesterday (Saturday) we went to a Christmas party organised by the Northland branch of the Child Cancer Foundation.  It was at Serendipity Farm Park.  The boys enjoyed feeding, holding and patting the animals.  There was a buffet lunch, and Santa brought a present for each of the children.  It was good to meet Abi the Northland CCF Support care worker.  We had spoken on the phone several times but not met in person.  I was curious about the other families.  The majority of the children had battled leukaemia, and a couple of the children had battled bone cancer, but there was no one like Rory.  Some of the children were several years into remission and it was interesting to hear about how they had progressed, and the battles their parents had fought. 

Late yesterday (Saturday) afternoon we went out to the Parua Bay Tavern for a farewell 'do' for John Gardiner, the Area Manager for DoC Whangarei.  JG was retiring and Grandad and Grannie (no relation) cooked all the meat on their spit for the guests.  We didn't stay long as Rory fell asleep in the buggy, and Sam got bored, but it was good to catch up with some friends we hadn't seen for a while.  What I have been through this year has changed me.  I often feel a quiet deep empty space between myself and old friends and acquaintances.  I struggle to find common ground, and cannot communicate much of what I think, feel and have been through.  I notice I have withdrawn quite a lot.  I also notice I am fiercely protective of Rory.  I don't like other people getting too close to him or touching him.  I know it's an extreme response but I can't help it.  We nearly lost him once, and I am afraid our hold on him, life's hold on him, is fragile.