Rory Gardiner's Webpage

15, Dec, 2009

Tuesday 15th December 2009


It is fantastic to watch a little of the old Rory emerge each day.  Little by little he grows in strength and confidence.  He has started to do some of the things we haven't seen or heard him do in months; growling us when we help him get washed and dried, bickering with his brother, acting like a 7 year old boy "ooh mum put your clothes on".  It is remarkable he is making gains only a month after leaving Starship and completing treatment.  He has been through a huge ordeal this year yet he hasn't let it get him down.  He still smiles, fires up, and is determined to be independent. 

Sean took Rory to the Child Health Clinic at Whangarei Hospital on Monday.  The nurse drew blood from his Hickman line.  The blood test results were all good, and had improved since last week (haemoglobin 122, platelets 121, white blood count 4.4, neutrophils 2.9).  There was a hiccup with his weekly care as one of the lumens/lines from his Hickman line has blocked.  The nurses tried to withdraw the heparin but nothing would come out.  They tried to push the heparin in but there was considerable resistance.  They tried every trick they knew but couldn't make the line work, so the line has been marked unusable and the heparin couldn't be changed.  Only one line is now functioning.  The nurse also changed the plugs and dressing.  Sean and Rory met with Dr Ollie.  Rory's weight has declined, he now weighs a little over 21kg.  In the afternoon the boys made hokey pokey with Grannie Gardiner and did some building with the lego.  Rory completed his usual therapy session.  He is still taking Cotrimoxazole, the antibiotic to protect his lungs, twice a day in the weekends (although it spilled over to Monday this week).

It has been a quiet day at Whakapara today.  The highlight of the day was a visit from Kath Gillespie and two members of the Rural Women's group from Dargaville bearing a beautiful Christmas hamper.  They stopped for a cup of tea and to admire Rory's beads.  The boys have made a couple of birthday cards for celebrations not far away.  For the left handed activity for Rory's therapy we transferred pick-up sticks between containers, calling out the colour combinations to complete to each other.  I am supposed to have been packing for the trip to Auckland tomorrow but I have put it off.  I know I feel nervous about the outcome, and I wonder if I can't bring myself to start throwing gear into bags because I am afraid it will all be for nothing.