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Rory Gardiner's Webpage

01, Mar, 2010

Monday 1st March 2010


 

Rory has settled into school fairly well.  He is managing a whole day, and is comfortable in the classroom.  He is attempting most activities, and completing the lessons with support from me.  His teacher genuinely cares about her students, and has gone out of her way to ensure Rory has settled in and his needs are met.  During the day Rory sits beside his best friend Kody, and good friend Korie appears every break to eat and join in the play.  I have left Rory to his own devices at morning tea and lunch as it's not cool when your mum hangs around with your mates (especially if you're an eight year old boy).  I noticed again this morning Rory has not ventured off the deck and ramp outside the classroom into the playground.  So far this year Kody and Korie have stayed close to the deck to play with Rory but they are now starting to venture out onto the asphalt and Rory is being left alone.  I have tried to encourage Rory out but he is resisting.  I know he doesn't like the feel of the rough hard asphalt under his feet, and feels inadequate during play, and has a fear of being hurt. 

Rory was awesome at the Dental Nurse on Thursday afternoon.  He sat in the chair while she numbed his top jaw on the right with paste, then gave him injections of local anaesthetic.  The filling was larger and deeper than she expected so it took a whole to clean out the area.  Rory was quiet and a bit shaken.  I was worried.  When it was finished he got out of the chair and we walked to class together.  Rory was complaining of the numb sensation in his mouth.  Sam came to say good bye as he was staying the night at his good friend Dylan's house so he could attend school on Friday.  After school Rory and I's teacher had a heart to heart.  My presence in the class room isn't easy for either of us and it was good to be able to speak openly and honestly, and find a way forward together.  When Rory and I got back to Whakapara there was a special visitor waiting, my cousin David Hayes from the Virgin Islands (USA).  David's mum Peggy and my dad are brother and sister.  Peggy last came to NZ in 1961.  David first came out to NZ when I was a little girl, and didn't return until four years ago.  His mother passed away recently and left a very generous bequest to Royal Forest and Bird.  David was in NZ making the bequest, along with my dad and his two sisters.  It was great to see old photos of our family, and to talk with David about our shared history. 

On Friday morning Sean, Rory and I drove to Auckland.  We called in at RM House and they gave us the key to an apartment at RM St Martins (the Waldorf).  There was a lovely large photo of Rory on the wall at RM House.  It is always great to see the warm, friendly supportive staff at RM House.  They are like old friends to us.  At 1pm Rory had his hearing tested at Starship Audiology.  His hearing has both declined and improved (at different pitches).  The Technician told us Rory's hearing is still stabilising.  Rory's hearing in his left ear is now slightly worse than in his right.  The Technician's checked Rory's hearing aids and provided us with some new batteries.  Afterwards we called into the Child Cancer Foundation for a cuppa, and to collect some vouchers which Donna left for us (thanks Donna).  We dropped our gear at the Waldorf then walked up to Make a Wish to meet with Oona (one of Santa's helpers).  Oona has been wonderful, organising every detail of Rory's Wish - we are starting to get excited about heading off to the Gold Coast on Sunday!  After we'd seen Oona we stretched our legs along K-Road.  It was something of a culture shock.  We had forgotten the noise and hustle bustle of Auckland.  At home, after heading to school with Dylan Sam was picked up at 3pm by Grandad, who also collected Sam's friend Matai for the weekend.

The second reason for our trip south to Auckland was to see Neuro-Developmental Therapist Ian Hunter who was visiting from Australia.  He met with Rory at the start of chemotherapy to design a programme for him.  Saturday was the second session with Ian, who re-assessed Rory and modified his therapy program.  It took two hours.  I was impressed by Ian's thorough holistic approach and I learnt a lot about Rory's difficulties.  One of Rory's main deficits is spatial awareness and co-ordination.  The left side of his body has partly disconnected from his brain i.e. he struggles to place an object in a defined location using his left hand, and we are trying to rebuild the connections.  We are adding/modifying exercises in Rory's programme:

  • Re-breathing air blown into a bag through a mask connecting tube (Masking). This is to try and improve his automated breathing response and reduce the incidence of burping.
  • When Rory is spun on a chair for 30 seconds he needs to try and focus on a reference object every time he comes around.
  • Strengthening exercises for his left hand - squeezing a stress ball, lifting la ight hand weight, hanging on an overhead bar (by both hands) for a minute
  • When Rory crawls forward on hands and knees the movement needs to be in two stages, with opposite hands and feet being lifted and lowered at the same time as he moves forward.
  • For commando crawling Sean, Sam and I have to move Rory's body together at the same time for him to teach Rory the correct two stage movement. This is called patterning. Rory's opposite hands and feet need to move in unison, plus his head turn. At the moment when Rory crawls (both hands and knees and commando) he is moving all four limbs independently in a four stage movement. The patterning has to be done for two months to enable Rory's brain to learn the movement, then he has to start trying to move his body himself.
  • The therapy sequence needs to be completed once per day with an extra session of hands and knees crawling and patterning.

Ian is emailing me Rory's new programme this week, and we will see Ian again at the end of July.  I discussed with Ian the possibility of Rory taking part in nordic walking (with poles), yoga and soccer.  He said these would all be valuable activities for Rory but he is not ready for them yet.  We have to continue to build the founcation.  Ian supported our bid to convert Rory's bike into a trike so I am going to make an application to the Halberg Trust for financial assistance.  Although Ian has been working with brain injured children for years in Australia with amazing results, and is a published author, he is considered 'alternative' to the NZ medical profession.  We cannot get financial assistance for Rory's sessions with Ian so we have to pay ourselves.  We have been fortunate to receive support from the Friends of Brain Injured Children of NZ Charitable Trust who source funding to enable brain injured children to get a better quality of life.  We arrived back in Whangarei Saturday afternoon.  Sam and Matai ambushed the car and showered us in Nerf bullets as we drove up the driveway.  Grannie had organised a treat.  She had bought a chocolate fondue/fountain set and for dessert the boys got to dip a few marshmellows on skewers into the fountain.  It was like being in Charlie and the Chocolate factory ... the whole kitchen smelled like chocolate. 

Nothing startling happened yesterday.  Sam and I went out for a ride/run.  Matai stayed behind as he had a sore leg, and played the playstation with Rory.  When we got home the boys were letting off caps on the driveway.  Sean went for a long training run and the boys and I drove out to Ngahau (25kms away) to pick him up.  Due to the Tsunami warning we sat on the grass verge on the hill above Ngahau and ate watermelon while we watched the sea, and contemplated whether it was safe to walk along the beach and go for a swim.  The sea was calm and flat and the tide was low.  After the warning time was over (11am) we drove down to the beach to check it out.  Sean and I decided not to stay as it wasn't worth the risk to the boy, much to their digust.  They had a water pistol fight when we got back to Whakapara instead.  After lunch Matai's mum picked him up.  We had a quiet afternoon which included a trip to the storage unit to get pick up some gear we needed.  We only found half of it, in spite digging down deep into the piles of boxes (which is hard work).  The boys kept making comments about how they were looking forward to having their own home again so they could unpack their rooms, and all their bits and pieces.