Rory Gardiner's Webpage

29, Dec, 2009

Tuesday 29th December 2009


We continue to meet Rory's long-term effects head on.  You wouldn't believe how hard it is to set aside half an hour every day for Rory's therapy.  Life has a habit of getting in the way, and we have had the odd day where we haven't got it done.  We know it is very important so we have to be regimented about making it happen.  Now his Hickman line has been removed Rory has been commando crawling but he is struggling to co-ordinate the movement, and it tires him.  I have sought the advice of the therapist (Ian Hunter) in Australia about how to address this.  Rory continues to take Cotrimoxazole (antibiotic to protect his lungs) in the weekends as his Lymphocytes are still low.  Today he passed some blood so we were off to Medlab for a finger prick blood test to check all his results.  His haemoglobin continues to fall slowly but most factors were within normal range.  Sean and I breathed a sigh of relief.  Rory is having continued trouble with wind when he is eating and drinking.  It is probably every boys dream to be able to do many loud, large explosive burps at meal times but for Rory it is uncomfortable and embarrassing.  He struggles to force food down as he quickly feels bloated.  He eats incredibly slowly with very little bites, and is only just maintaining his weight.  One of the Medullo mum's told us 

"It would be great if there is a speech-language pathologist/therapist available to work with Rory.  An initial evaluation and consultation would help determine how to move forward. An SLP can help with re-learning the proper breath control that our kids need not only to regain their ability for, and fluency of, speech, but also to swallow well and efficiently (i.e. without gagging, choking, swallowing too much air).  The cerebellar tumor's mass effect, the surgical trauma, and loss of healthy cerebellar tissue all affect one's ability to coordinate and negotiate voluntary muscle activity. That encompasses the whole eating process, from deciding how much liquid to swallow at once and how much food to put onto a utensil, getting it successfully to one's mouth, re-learning lip and tongue control over liquid flow, knowing how long to chew, to managing breathing while chewing and not breathing while actively swallowing." 

To hear this made sense, and it was a relief to get to the core of the problem.  It did not occur to us his left sided weakness and impaired co-ordination would affect something as simple as eating.  On our next trip to Starship I will speak to Dr Stephen about an assessment with a therapist. 

We continue to easily fill our time in the Naki.  On Sunday we went to a Big Dig at Ngamotu Beach.  Sean, the boys, Uncle Guy, Sacha and Corbyn made a sand sting ray for the sand sculpture competition, and then Sam and his cousins took place in the bucket race (transferring water with a cup).  Their team won.  Both boys went in the big dig to find a tag to win a prize.  Sam found a tag.  Rory didn't.  I had to virtually drag Rory into the roped-off area to take part.  He wasn't keen but I wouldn't let him opt out and sit on the side line.  He got on his hands and knees and dug but didn't like the close presence of the other kids, or digging in the sand on his hands and knees with sand flying in all directions.  A couple of older boys made negative comments about his appearance (no hair and scars).  I was a bit upset.  I had a talk with Rory about how they were ignorant, that he was beautiful and special, and he shouldn't listen to what anyone else says.  Plus if he ever had any problems he should tell Sean or I, or his teacher, or Sam, or his grandparents and we will sort it out.  After lunch we called up to Jason and Wendy's house under the mountain.  Rory enjoyed making distorted pictures of himself with Wendy on the computer.  Rory did the posing and Wendy operated the programme which morphed his face, then took photos.  On Monday we visited Brooklands Zoo where we enjoyed watching the otters and capuchin monkeys.  The boys had a play at Westown Primary School where Rory managed to complete half of the middle/senior school playground on his own, frightening Sean and I quite a lot.  We went to the movies and saw Avatar, which we all thought had stunning visual effects, and a story line we could appreciate.  Today we visited Poppa's extended whanau, Auntie Mary and daughter Maree, and Auntie Olwyn and Uncle Sid and daughter Diana.  It was lovely to see family we don't see very often.