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Rory Gardiner's Webpage

12, Mar, 2012

March update


One of the dilemma’s of sharing Rory’s journey is how much to share. There is a fine line between respecting Rory’s privacy and telling how it is so people can understand what life for him is like.

We had an incident with Rory this month. It was a timely reminder for us of what he faces every day, and how we need to adapt to support him so he can ‘manage’ life. After dinner one night he was being reprimanded for inappropriate behaviour, only something minor. He was unhappy about this and his response was a downward spiral; first answering back with a face like thunder, then a raised voice, and swear words. At the bottom of the spiral he said he was going to hurt himself and started to hit himself about the head. Sean had to intervene. I have spoken to the Neuropsychologist at Starship. She said it is normal for behaviour to be worse at home, and at the end of the day fatigue is at its worst. All of Rory’s difficulties are worsened by fatigue, as is his emotional control. Dr Kath said any brain bleed is an insult to the brain and Rory will need time to recover and rehabilitate. He will have regressed because of it. This is something I did not appreciate. She also said Rory is at an age where we expect emotional control to improve i.e. the environments expectations are increasing for him without us being aware of it. Rory will need time. We have to understand his difficulties, and adjust our expectations. We have to plan rest periods for him, and give him guidance and support to help him manage his emotions. We are looking into counselling as a way for Rory to ‘off load’. Apart from this incident things have been going well. School is in full swing, I can’t believe it’s week 7 already. There always seems to be something happening after school too; Clever Kids, swimming, or friends over to play. Rory has new molds for his hearing aids so they fit better in his ears. He is looking forward to his 10th birthday at the end of the month. He is having a combined celebration with his best friend Ethan as they were born on the same day. This week (17th) will be three years since Rory was diagnosed with cancer. Some days it feels like it never happened and others it feels like cancer is still fighting to tear him from us.

Sam’s final test results came back. His screen for Coeliac Disease (gluten intolerance) was high. There is only one definitive test. Sam will have to be anaesthetised a small piece of his stomach lining removed via endoscopy. He is on the waiting list for this procedure which will hopefully occur in the next couple of months. Apart from intermittent symptoms he is well within himself. He was appointed to two leadership positions at school – Sports Leader, and ICT Techie (Technology Technician). He was very pleased. At swimming sports this week he won the 25m back stoke race for the 12 year old boys, and is the fastest boy back stroker in the school. He and I have continued to run/ride and it’s so dark now at 6.15am we had to buy lights as we were invisible on the road. Sam spent two days on an Intermediate camp. Sean attended on Day 1 and the Intermediates went tramping on Mt Taranaki to Waingongoro Hut crossing the new swing bridge. The sky opened up so they got drenched and muddy which was a foreign experience for many. They spent the night at Oakura Beach in tents enjoying fish and chips and beach soccer. I attended on Day 2. The kids caught a bus to Back Beach where they learnt about Tapuae Marine Reserve and got to run the giant black sand dunes. This was followed by life saving skills at the Aquatic Centre, and exploration of Kawaroa Rock Pools. I really enjoyed the kids excitement and enthusiasm as they learnt about the many and varied creatures.

Colt is now 14 months old. He has had his first haircut. On the day he was 14 months he took his first two steps on his own. He is now walking short distances unaided. He has definitely been a late walker. He is a Houdini, one day he made it out the front door, down the deck, and out to the gate. He is obsessed with putting all manner of things into the rubbish bin, the bath, and the toilet so we have had to shut the doors. He has also snacked on my Lush shampoo bar, some aloe vera gel, and Vaseline. He has had several episodes of waking in the night, and for the past three days has had a nasty cold (temps 39.4 degrees). We are lucky he keeps really good health. I think this has something to do with the fact I am still feeding him (although the volume has declined as he feeds less). Colt and I have started Inglewood Playcentre, the Monday morning session. Colt is drawn to the dolls bed and cots (he gets in), the water trough (he soaks himself and everyone around him), and the foam trough (he rolled in it). He looks like a little boy sitting at the table eating morning tea with all the other children. Last week he clambered around the wooden fort outside. When it was time to go down the steps he was bothered by the fallen leaves, removing them one at a time as he descended.

We have continued with our adventures, slowed only a little by the changing seasons. On the 29th of February there was the first snowfall on the mountain, and on the 4th of March the snow was way down. We climbed to the Patuha Trig, the high point on the Kaitake Range. The last section of the track was a vertical rock climb and there was some pushing and pulling to get us all onto the top. It was a hot sunny day and we got a fantastic view of the whole Taranaki bight. Sean and Rory have been trout fishing. Rory caught his first Rainbow trout in the Patea River and Sean smoked it. They are using cicadas as bait (to my displeasure). We have had a couple of swims at East End Beach and Inglewood Pool, and some walks on the New Plymouth Coastal Walkway. The boys got MGP Pro Scooters 2012 for Rory’s birthday (Sam saved up for his) so they are on wheels at every opportunity. Rory has had a few scrapes already. Americana passed through Inglewood and Rory was on the side of the road with all the other Inglewood Primary children watching and waving at the almost 600 beautiful American cars go by. Sam and I went to the New Plymouth Racecourse on the Saturday to check them out, and watched the sprint/burn out finals (it was loud and smoky!). Last weekend we visited Moki Forest with OSNZ. We walked to Rerekapa Falls recording birds, botanising and picking the last of the season’s blackberries for a pie. The highlight of the day was seeing a Giant bush dragonfly in the hand.