Salami warning

Being in New Zealand , the kids learn at school what to do in event of a volcano eruption, earthquake or tsunami. It tickled us though when Noah came home from school yesterday and told us he had been taught what to do if there is a 'salami'!

World Down Syndrome Day party

March 21st is World DS day - the 21st day of the third moth standing for the 3 copies of chromosome 21. It is also the anniversary of Paul and I getting engaged, Paul very romantically chose the first day of spring (as it is in the northern hemisphere) as he liked the song "If I ruled the world every day would be the first day of spring." We got engaged 34 years ago.
Yesterday the zone 21 youth group here put on a party for all the families who have a child with DS in Palmerston. People had to wear orange and purple which are the colours of the NZDSA. It started at 6pm and Noah and Isaac lasted over an hour before Isaac nearly fell asleep and Noah's behaviour deteriorated and he punched Hannah.
We can tell things are returning to normal by the way Noah is no longer so well behaved - I think when he was sick he was really quite afraid and felt the need to behave so we would look after him (and perhaps didn't have the energy for many exploits).
He is back to saying (or shouting) "NO" to those demands which mean a quick change of activity or leaving his Ipad, and got into trouble at school for being uncooperative like this to his drama teacher - he had just returned from an out-patient visit and abdominal X-Ray so his was pretty disrupted with presumably a few bad memories.
Obviously the whole time of being sick has had a major impact on him and the other day when Lily said she had nightmares about were-wolves Noah said "I had a nightmare that my stoma had come out and wouldn't go back in". He often asks where 'Oswald and Epic' (his pet names for his stomas) are now. I told him they are back inside where they belong and he said "Does that mean I am pregnant with Epic and Oswald?"
He was also obviously a bit upset about his rectal prolapse and tells us to be careful when we do his washouts, he is scared to push very hard when on the toilet now in case 'the phantom blot' reappears - you need to know the wii game 'Epic Mickey' to understand his naming of his prolapses!

suitable birthday gift for Lily's friend

When we were in Wellington hospital and soon afterwards we were not monitoring Lily's money and were shocked to discover that in one weekend she had taken out $240 on Friday, Saturday and Monday and could only account for about $200 of the $720. She may have left money in the machine, given it to a beggar or her friends or dropped it but she just has no idea. Anyway since then we have been tightly monitoring her money so I was involved in getting a birthday present for her friend - a guy with DS turning 23. I asked her what she thought he'd like - when it became apparent that she had no idea of his favourite foods or music (even though she spends each Monday afternoon with him) In the end I asked her what she thought he liked doing as we could get him something related to that. After some thought she said we could maybe buy him a magazine of naked ladies as he keeps one in his bedroom and loves to look at it!
I did consider this but got a T-shirt instead!

a week with Rachel

Rachel is trying to sort out her newly independent life following her break-up with Adam her partner of 6 years. She has been living in Auckland with Adam's mum while Adam lives in Queenstown but this is obviously not sustainable. This week she managed to get a lift to Palmy to spend the week with us. It was not a good start when the hidden key I'd told her about was not there and she had to sit in the garden for 2 hours before anyone came home!!
Anyway we had a nice week and especially enjoyed this natural technique she has of keeping a tidy house around her and all her help with the boys. She let Noah use her lap top a bit until he tried to trace the route all the way from Palmerston to Auckland on Google street view!
Rachel did train as a nanny so she is vaguely wondering about a live-in nanny job in Auckland or UK, but she also has some interviews for receptionist jobs.
Paul had a busy week with Wednesday in Hawera, Thursday in Christchurch and Friday in Sydney. He managed to do Sydney and back in a day - leave Christchurch airport at 7am and get back to Auckland at midnight - and his meeting there was just at an airport hotel so he did not get to see Beth.
However Beth will be in Auckland next weekend as she is being the sponsor (not sure if that's the right word) when her friend Gracie is admitted to the bar. Hopefully Joe, Sam< Beth and Rachel will all meet up and celebrate Joe's 30th birthday which was on Friday. We can;t go as Hannah is bridesmaid at another wedding which we've all been invited to.
Noah is doing pretty well, although we should possible take out shares in 'pull-ups' and 'brolly-sheets' - one of my least pleasant experiences of the week was sniffing a brolly sheet to see is it belonged on the clean or dirty washing pile! He has an outpatient surgery appointment and X-Ray booked in Palmy this week and I thought we'd go if only so that news of his Wellington surgery gets documented in his Palmy notes.
Paul wants me to write that he has launched a medical app which made it to the top ten charts for apple medical apps in certain countries (for example having two downloads in Ecuador puts you in the top ten there). It is free and about dosing dabigitran so I have no idea why any readers of my blog would be interested!! but the link is here. He had a letter published in the New England Journal of Medicine and some of the follow up to that mentioned his app so he has now had over a thousand downloads.
Joe is not that impressed as his games just click red and goo up are bringing him in some money as opposed to fame.

relaxing but a hiccup

Noah has finally got back to school and I have had two lectures at Massey and can feel my stress levels dropping (and the eczema on my legs slowly healing).
I had to give the school quite a lot of instructions about Noah's toileting including the fact that he gets a severe 'nappy rash like' skin condition if not carefully wiped with wet wipes and having thick cream applied (thanks Beth for sending all the calmoseptine cream you found in Sydney as it's not available in NZ) I wonder what the regulations are about having teacher aides go this close to a child's butt - I'm sure it wouldn't be allowed in UK and I am pleased we no longer have to discuss behaviour like this with social workers as we have allowed our foster care approval to lapse.
I felt relaxed enough that I decided to finalise arrangements for the holiday we had booked even before any of this happened in December - Paul is going to a conference in Liverpool and as this coincides with Noah's 13th birthday and the end of exams for me we decided to accompany him and then go on to see relatives in North Wales. Hannah will look after Isaac for us in NZ.
We have now booked the Rasa Sentosa resort for 3 days on the way out, Staybridge suites in Liverpool for the conference and the beach house in Prestatyn from 30th June to July 6th when we fly back to NZ.

Should have known this was a little overoptimistic for no sooner had cheques been written and credit card details posted then Noah had a prolapsed rectum.
Paul was giving him a bowel washout (330ml saline as an enema) and as Noah then sat on the toilet he said "Oswald is back" _Oswald was the naughty prolapsing ileostomy stoma.
About 6cm of rectum had prolapsed which Paul was luckily able to easily reduce, but we will now have to email the surgeon again and presumably avoid enemas. At least we know the botox will wear off with time and not allow his rectum to just drop out!

I am not looking forward to having to tell his teacher aides about this issue they may have!