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Rory Gardiner's Webpage

05, May, 2009

5th May 2009


 

The CT scan showed Rory's ventricles are smaller which indicates his shunt is working.  However he is still getting intermittent headaches which we are keeping an eye on, plus his cortisol level is going to be checked every morning.

Tonight we are staying at Ronald McDonald House by default.  The iv line in his arm had to come out this afternoon as it was sore.  Three doctors spent an hour trying to esablish a new line without luck.  Most of Rory's peripheral veins, in his hands and arms, have collapsed or been bruised.  He has been pricked plenty.  Without the line he cannot get his antibiotics intravenously.  Infectious diseases (ID) want the Doctors to have another go establishing a line in the morning, if this doesn't work they will have to make an alternative decision.

We got out to the Auckland Museum today.  There were several school groups there and Rory and I watched and discussed them over lunch.  I felt sad he has been so isolated from his peers for the last eight weeks.  We also fed the pigeons in the Domain.  Yesterday Rory got a lot of pleasure from a special visitor to the play room.  Her name is Peggy and she is a hearing dog.  It is her job to alert her owner Angus (who is deaf) to sounds i.e. phone ringing, someone knocking at the door, a baby crying, a smoke alarm etc.  Peggy enjoyed being patted by Rory.  We have also finished our first book, George's Marvellous Medicine by Roald Dahl, and have had a few rounds of Star Wars Trump Cards (which I never seem to be able to win)! 

Rory currently has four sets of stitches in his head.  He got the first (and oldest) set out today.  10 in total!  Definitely worthy of a courage bead from Steph (who took them out).  He wanted to keep them so Steph put them in a specimen jar so he could take them to class.  He had a great session at physio today.  He and Rachel built puzzles, and patterns on ropes, and then he balanced on the wobbley board while throwing and catching a ball and then some hoops.  He had a ride on a new kind of kart which you power and steer with your feet.  As I watched him ride around Starship I wondered if I could have achieved forward motion!

Rory is becoming famous around Starship for his green shoes.  I picked them up last week while he was in surgery, and he was able to put them on for the first time yesterday.  Everywhere we have been people have commented on how cool they are.  He is pretty chuffed!