Rory Gardiner's Webpage

10, Dec, 2009

Thursday 10th December 2009


We are sweltering under a hot sunny sky.  Today the temperature reached 27 degrees.  This afternoon Rory complained of a headache.  This sent off alarm bells in me.  Rory has the shunt under his scalp.  It drains the CSF (cerebral spinal fluid) into his abdominal cavity when the pressure builds up.  50% fail in the first two years.  They become blocked, infected, malfunction, cause complications, or move.  The first sign of hydrocephalus (a build up of CSF) is a headache in the middle of the forehead, the same as he suffered from when the tumour was first diagnosed.  Rory also still has the Hickman (iv line) sticking out of his chest.  The wound has healed so scar tissue (and stitiches) are holding the tubing in place, but there is a high risk of infection.  A temperature is the first indication of infection in either the shunt or the Hickman line and something we monitor him closely for. Today Rory is a bit warm, but I am putting it down to the heat of the day.  I can't help but feel jumpy. 

We are continuing to battle him to eat enough.  His weight is still dropping.  He has rejected every drink and formula we have given him (and tried sneakily to give him).  The main problem is he is eating almost no carbohydrates, and limited protein.  He prefers milk products, fruit and vegetables.  We are managing to get eggs into him, and a little salmon.  Playing the heavy is getting tiring and isn't good for either of us.  I'm not sure what to do. 

Yesterday (Wednesday) I took Rory to see the Dental Nurse at Whangarei Hospital.  It was the first time he had seen a Dental Nurse in 18 months.  His bottom molars are coming through at the back, and the wiggly tooth at the front will fall out on its own.  He refused to bite on the x-ray films with his teeth to hold them in place so it meant an extra hour sitting in the queue at radiology to get a panoramic photo of his whole mouth.  The machine was pretty cool.  He rested his head on a small platform and the camera swung 360 degrees around his head.  Sam and I watched the image come up on the screen.  You could see the adult teeth lying in wait underneath.  Rory needs two fillings so has to go back in 10 days. 

Grannie Gardiner had an operation yesterday to remove a growth under her eye.  It was done under local anaesthetic at Whangarei Hospital and she came home with a black eye, bruised face, and stitches.  We have been keeping a close eye on her.  It was interesting seeing Sam's response.  He kept right away from her for most of the afternoon yesterday.  I think he was worried and un-nerved at seeing her hurt. 

We have continued with Rory's ND Therapy programme.  He is crawling well, even though it is not his favourite activity.  He enjoys being massaged with the vibrating electric massager but I have to be very gentle.  It is good seeing his nerves twitch in response to the stimulation.  Yesterday afternoon we used it on Zsa Zsa, Grandad's dog, for a joke.  She loved it and wouldn't leave.  Rory's left hand appears to have a mind on its own but he concentrates hard to complete a task (yesterday we matched puzzle pieces), but he needs time to allow him to succeed.  I had a call from the Physio at Taranaki Base Hospital and a team of Therapists are going to assess him in early January so they can come up with a plan. 

Sam received a lovely parcel in the mail from the Millers for his birthday (Thanks Denise, Andrew, Brad, Lewis and Cole), and there was a parcel of Christmas activities for the boys from teachers Marion and Jocelyn at RM House School, and some of the work Sam did while he was there (thanks Noah for reminding them to send it!).