Rory Gardiner's Webpage

02, Jun, 2010

Wednesday 2nd June 2010

It has been hard to find time to update the website.  I have been on my own for a week and there has been a lot to do.  Sean is still in the north completing work commitments, organising the transfer of our household effects, and running between the professionals involved in our house purchase, and the re-organisation of our lives, to move the mountain of paperwork.  I have been focused on the boys, caring for them, and supporting their transition to a new school and life in Taranaki.  I have also been trying to organise the purchase of a house in Inglewood so we can provide the boys with a secure stable home after 14 months of uncertainty and upheaval. 

Although Rory is out of hospital he has been left with a complication from the shingles - post-herpetic neuralgia (PHN), or damage to the nerve along which the shingles progressed.  Unfortunately the nerve starts behind his right temple and runs into his right eye.  The pain occurs as a strong stabbing above and into his right eye.  It lasts for up to 30 seconds and has occured mainly at night.  He wakes screaming, eyes squeezed tightly shut, and toes and feet clenching and unclenching.  The pain is intense.  Over the course of this week the episodes have become more frequent.  Last night I got up five times to comfort him until it passed.  I have been reluctant to give him strong pain relief.  Rory has had today off school and we visited the Children’s Ward at Taranaki Base Hospital.  The Paediatrician has prescribed a drug used to treat epilepsy.  Rory will start off on a low dose, and we will slowly increase the level until he gets relief from the PHN.  I have to record all episodes.  Hopefully it will peak, then decline, at which time we can discontinue the medication.  At this point in time there is no way to determine how long this will take. 

Sam and Rory started Inglewood Primary School on Monday.  Our first school visit last Friday was fairly daunting.  We were met by the Principal, Deputy, Special Needs Co-ordinator and two staff from the Ministry of Education.  An intense couple of hours was spent deciding Rory’s teacher aide support for the remainder of this term, and Term 3.  He has been allocated 20 hours per week (out of a total of 30).  We had a brief tour of the school.  Sam is in a mixed year 5/6 class (Room 10), and his teacher is the lovely (young) Miss King, and Rory is in a mixed year 3/4 class (Room 7), and his teacher is Mrs Peters.  Sam was brave enough to pop in and say Hello to his teacher and the class, whereas Rory hung back outside and his teacher came outside to say Hi.  The boys first day went as well as could be expected.  Rory lasted the whole day but was very tired.  Both boys have been quieter, subdued and a little withdrawn this week but it was to be expected.  Everything is new and very different.  I have talked to them about taking it slow.  We have plenty of time, and I am there to support them as long as they need me.  I am currently Teacher Aiding Rory but I would like to step away at some stage this term to let someone else take my place, but Rory has to be comfortable and confident enough for me to do so.  Sam has settled easier.  He has been selected for the Senior soccer team for the inter-schools tournaments this term, and was out on the field at lunchtime on Monday playing touch rugby with the seniors and intermediate children.  For Rory in some ways it has been like starting from scratch.  His class work at tables, so we had to organise a wheeled chair, and a close space for his gear.  He has been given the same work as the rest of the class, rather than work which has been modified to suit his learning needs.  Mrs Peters, the school and I will work together to establish an individual education plan for Rory during the remainder of the term.  The children are very friendly and Rory has been allocated two Buddy’s for break time each day so he won’t be alone.  This has helped him immensely to feel as though he belongs.  On Monday afternoon both boys attended kapa haka and it was strange to hear them learning Taranaki haka.  I think it shook up something inside Sam as I heard him chanting the Nga Puhi haka after dinner that night.  Yesterday it was a wet day and the middle syndicate started the day with jump jam in the hall.  It was like being in a crazy disco.  Rory tired quickly but I managed to get him up and moving for every second song.  I worked alongside him during the day when there were activities to complete, and he went with the other children on the mat for group learning. 

Last weekend we went to church fairs and garage sales with Nana on Saturday morning and picked up a few treasures.  After lunch Rory had his first attack of PHN which sent him to the couch for an hour.  I had to administer high strength pain relief which he hasn’t needed for months.  On Sunday Sam and I went for our usual walk.  We have been trying to get out every other day to stay sane, but have slipped down the ladder from running.  Cousins Sacha and Corbyn came for lunch and the boys enjoyed playing with them.  They have seen a bit of their cousins over the last week as they have stayed a couple of nights.  After lunch Nana and Poppa and the boys and I went to Pouakai Wildlife Park.  The boys enjoyed feeding the animals, and Sam enjoyed watching the white tigers (who were recently transferred from the Lion Park outside Whangarei).  Poppa shouted the boys hot chocolate and they shared a bowl of hot chips in a sunny spot inside the Stumble Inn on the way home.  It has been cold since we have been in Taranaki.  There has been fresh snow over half way down the mountain.  The boys and I laughed to see smoke coming out of our mouths as we walked to the car after school yesterday afternoon!

I want to thank all the people who have called, sent txts, emails, and left messages on Rory’s website.  We think of you often, and you are in our conversations.  The pregnancy has caused me fatigue and morning sickness which comes on around 5pm and sends me to bed most nights before 8pm.  This means I have had to give up ‘working’ well before my usual time, so I apologise for not getting back to you all.  Making it through the day in one piece has required all my focus and energy, and is likely to do so for a little while longer.