Rory Gardiner's Webpage

20, Aug, 2009

Thursday 20th August 2009


When the alarm went off at 12.30am for me to wake and give Rory his Maxilon I don't think either of us were very clear headed.  I had dozed on and off for two hours fearful I would sleep through the alarm and neglect my duties.  I don't think Rory was too thrilled at being woken up for more medication. 

It was wonderful to get active, and get out into the world, with Rory today.  He was awake and rearing to go at 6am.  In spite of this we were a little slow getting out the door as I had to grapple with the feeding pump (turning it off and disconnecting Rory) and sort out the residual mess from last nights change of residence.  At 9.30am Rory had a physio session with Rachel.  She incorporated much of what Ian Hunter recommended, crawling, commando crawling, and left handed activity.  We have to slow Rory down to force him to focus on getting the movement and co-ordination right, rather than letting him carry on at speed making adjustments because of his deficits.  He has to relearn how to move correctly, starting at the lowest level.  He enjoyed the physical activity and the challenges Rachel set out for him.  After physio we went out into Auckland Domain and fed the rock pigeons on the way to the Museum.  There was one duckling holding his own amongst the flapping birds.  Rory always heads for the Natural History section in the Museum and never fails to discover something new.  Today he found a giant fossilised version of his ammonite, and an exhibit where a native bat was feeding from and pollinating a threatened NZ plant, the wood rose (Dactylanthus taylori).  We have two pieces of Dac on the shelf at home.  The first piece I discovered in an op shop in Whangarei and Rory's eagle eyes spotted the second piece in an op shop in Dargaville.  If only the pieces could talk and lead us to their original location.  Rory also enjoys watching the geckos, and live marine creatures in the rock pools and tanks, but he is totally grossed out by the mealy worms.  Today I lifted the slice of apple in the tank and the seething mass underneath gave even me the willies. 

This afternoon Rory had a clinic visit at Starship.  He received his iv antibiotic and the Nurse took a blood sample.  Rory had quite a large nose bleed last night (tube side) and Nicola wanted to check his platelets were ok.  They had dropped a little from yesterday but are still high enough to allow the blood to clot.  I will have to monitor him closely over the weekend as he may need another transfusion.  I received more instructions from the nurses on the feeding pump, which I connected him to again this afternoon just after 4pm.  We read a lot of books together this afternoon on the ward, and they are a really good way to pass the time.  Just for a moment you are lost in the story, and the reality around you ceases to exist.