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Rory Gardiner's Webpage

01, Dec, 2009

Tuesday 1 December 2009


 

Happy 10th birthday Sam!

Today is Sam's 10th birthday.  Double figures.  I can't believe a decade has passed since he arrived a month early at Whangarei Hospital.  I didn't get to see or hold him when he was born, he was whisked away by a Doctor to the Special Care Baby Unit as he wasn't breathing properly.  He was a tiny placid baby with big eyes which watched the world.  He is now an active Year 5 who can figure out technical things without reading a manual, beat his parents at board games, ride 20km on his bike, devour a Harry Potter book in a handful of sittings, and sing all the words to the latest songs on the radio.  I can barely keep pace!  I am proud of him, and of the attributes he possesses.  He has been through a lot this year, and has often been in the back ground.  He has been remarkably tolerant, patient, and caring.  As Rory recovers and his needs lessen I hope Sam and I can regain some of our former closeness which I have felt slip this year because of distance, growing up, pressure and fatigue.  If Rory has devolved to being the baby Sam has evolved to being a semi-adult.  I am hoping time will result in a return to more 'normal' roles. 

It was an early start.  Sam snuck into our room before 5am to pinch and punch us for the first of the month.  He was sent smartly back to bed, but only lasted until 5.30am as he was too excited to settle.  It was 6am card and present opening!  The boys spent the day with Sean as I went to work at Whangarei District Council.  They started the day with pancakes and a strawberry smoothie.  The chosen activity of the day was bike riding around the Whangarei BMX track.  The boys were lucky the weather held.  Sam got a new mountain bike for his birthday and was delighted to try it out on the deserted track while Sean and Rory watched from the stand.  After lunch the boys curled up with a Harry Potter DVD, and Rory completed his therapy session.  It was American hotdogs for tea, followed by an ice cream cake which was sneaked into the house by Grannie Gardiner. 

Yesterday (Monday) Rory had a blood test at Whangarei Hospital, and an appointment at the Child Health Clinic.  He had the dressing, heparin and plugs changed on his Hickman line.  I met with a new Paediatrician and discussed Rory's care.  Rory's haemoglobin has fallen to 82 (from 87 last week).  He is now border line for a blood transfusion.  We keep hoping his haemoglobin will turn around and recover on its own but we have seen no evidence of it yet.  Low haemoglobin results in fatigue, paleness, and a drop in blood pressure.  It has been about three weeks since his last transfusion.  His platelets continue to recover.  His white blood count and neutrophils have slipped a little but are still ok.  The plan is for Rory to have a repeat blood test tomorrow (Wednesday) morning with a type and cross match to prepare for a transfusion on Thursday morning on the Children's ward at Whangarei Hospital if the haemoglobin hasn't turned around.  The blood has to be sent up from Auckland and irradiated first so is unlikely to be up by tomorrow night.  

I received an email from Amy, the Dietician at Starship who said to utilise skim milk power and maltodextrin in Rory's food to boost his nutritional intake.  I have bought some small sachets of todldler formula which I am going to try adding to smoothies and baking for him.  We received a call from Marion and Jocelyn at RM House School, enquiring after Rory and sending their best wishes.  They are going to leave the boys on the RM House School roll and send me up some Christmas activities to do with them for the end of the term.  I made the decision not to enrol them in a local school for the final four weeks of term four as there didn't seem much point.  One of the decisions Sean and I will have to make is where to send them to school, once we decide where to live!