Tuesday, July 10, 2012

So Much to Tell ...

So, it's been a very busy 3 weeks with school holidays thrown in to add to the mix!  In bullet points:

  • Last Thursday evening Sam's GJ balloon burst, aaahhh what to do?  I stopped his milk feed, taped the tube in situ (so it couldn't come out any more), called Starship and told them I was coming in first thing in the morning.... so we spent Friday morning in radiology and Sam has a new GJ.  The old one had been in for 11 months, so it had done well.
  • The spinach experiment went well and has now been upgraded to chicken liver!  Today he had his first 'taste' of chicken liver with O.J..... will give this to him 3 times a week and see what happens to his iron levels.  So Sam gets the pate, whilst the brie and red wine are reserved for his parents.
  • The DKT natural remedy arrived today from Tokyo!  I just have to figure out how to mix it up and how much he should get.....
  • This Friday Sam is going to be in Daystay in Starship for his teeth procedure - having them coated as his frequent vomitting is wrecking his teeth.
  • Amidst all this we farewelled one of Sam's regular nurses, which was sad for us, as she's been a part of our lives for nearly 3 years, joining in with our family in her calm and fun way and giving us the chance to relax.  We will continue to keep in touch with Katherine as her nursing continues on in a different country and we look forward to seeing her use her skills with other families in need.
  • As Sam is now 3, he is eligible for 20 hours free kindergarten.  We've done the usual pile of paperwork to get this sorted and he's been approved through the Ministry of Ed, High Health need, to have an assistant - he needs one for medical not learning.  But this will take months to sort out, so in the interim I have enrolled him in correspondence kindy!  Yes, it does exist and we are looking forward to getting age appropriate puzzles and tasks to help him continue his development.
  • After literally 2 years of wrangling with DHB's, Ministry of Health, Agencies, and Care providers, we gave up and went to our Member of Parliament.  He took up our cause and we are pleased that the Minister of Health approved our funding to come out of the same pot of money as disabled people.  Sam is currently classified as 'Long Term Chronic' or LTC.  Our carers get paid substantially less than disabled peoples' carers, as we have to use an agency whereas they don't - the same amount is allocated to both groups at the start, but we have access to less of the funds as we had to use agencies.  To me it was a moral debate - we were just wanting what was right and logical to be the outcome - not just for Sam, but for the other hundreds of families in NZ, who like us, have their 'one in a million condition kid' who doesn't fit the standard box.  Now we are trying to sort out the nuts of bolts of what this means in reality, as yet again, we are the first family that has ever had this change....so again it is a challenge to all the parties involved to do what is best and right and not just hide behind policies and protocol - which largely were never written with Sam or the likes in mind.  
  • So with the above in mind, this week we had our MP and his colleague home to lunch to thank them for their time and assistance with Sams case.  Francis greeted them with a handshake at the door, and then Sam stepped forward and offered them his hand!  It was so cute to see him copying his Dad.... I must make sure Francis' razor is out of reach!  It was a relaxed and interesting meal as we all shared how much we have learnt about the NZ health system, the impact it has on family and how we must keep the people at the heart of policy.
  • It is school holidays, which isn't my favouritest time as most of my carers have holidays to consider, so I struggle with trying to be available to do fun things with the girls whilst having Sam.  But this said, we have managed some fun outings with Sam joining in with our trip to the Miranda Hotpools, our friends 'farm' in Pukekohe and tomorrow we are going to make sweets at a sweet shop.
  • Finally a slow moving lime green thing has been seen skulking around our area on a more frequent nature.  Some reports of sightings state it is walking fast, others state it could possibly be a jog - more will be revealed in the next blog and we hope to have captured 'it' on film for you!


Kate Manson said...

Wow great news re the funding! You are doing an amazing job Shirley, I so admire your stamina!

Francis and Shirley said...

Stamina waned today Kate - was a toughie with Sam back in having his teeth done... he's always terrible post op and he's pretty sore and unsettled with having 4 metal caps forced over his molars... poor kid, today I wasn't feeling strong, lots of tears for my little one... but he's settled now. X