Lily's premiere

The NZ Down syndrome launched their 'plan for the future' DVD on Tuesday which features Lily as one of the three stories about moving from school to work. Lily of course was overjoyed to be the guest of honour at the Palmerston North launch. She spoke very confidently and clearly about how she had always wanted to be an actress and this was her 'red carpet' moment and she accepted her bouquet of flowers as if it were her due! Noah and Isaac behaved pretty well - we bribed Noah with the treat of fish and chips afterwards and dressed Isaac in his pyjamas (very cute Christmas ones) so we could put him straight to bed afterwards.

Thanksgiving

It is becoming a family tradition to celebrate the American festival of Thanksgiving by giving thanks for the birth families of our adopted children. This year we invited two other families along, so there were a total of eight children here not living with their birth parents (and Lily said we must remember Rachel's birth parents too even though Rachel wasn't here so that made nine). Noah was the only child not able to light a candle to remember his birth parents - (he was a bit disappointed to be told I was both his birth and forever parent!) so we let him light the first candle on the advent crown instead.

We made sweet potato with marshmallows on and pumpkin pie and were very pleased when the American family visiting thought it tasted like the genuine article. We also dressed the boys in their American T-shirts and put up our Christmas decorations as they do on Thanksgiving w/e in America.

Noah read a children's book on Thanksgiving then Lily read a simple book about adoption and fostering 'we belong together'.

As each child (or their parent in the case of young ones) lit their candle they could say what they wanted about their birth family and show photos - it was very moving when a teenager who has grown up in care said that finding her family at age 15 was the best thing that ever happened to her.

my IPad at Noah's school

I was very calm when the teacher phoned and said did I know Noah had taken an IPad to school - of course I didn't. But I assumed it was the children's Ipad - the one protected by Otterbox case that Noah had been writing a social story on about our UK trip. Now I've realised it's my IPad he's got - my beautiful white with pink case IPad 2, my most prized possession, with my kindle and all my books on and no protective cover or screen. I am longing for it to make it home to me in one piece after school.
I had just been thinking how much Noah's behaviours had improved and how relatively easy it is to go out with him now - Even the trip to UK only involved one small accident with pull-ups because of the "evil toilet" on the plane, and some of the toilet phobia eased once we started keeping a diary of "toilets Noah has encountered" and giving him a bravery rating for each he used alongside his rating for the 'shape of the hole' this is the determining feature which can only be judged by Noah as to whether the toilet is nice, scary or "evil".
An incident last Monday brought home to me how lucky we are with Noah's behaviours really. Each Monday afternoon we are visited by my friend who has two children on the autistic spectrum - her son R is the same age as Noah and has Down syndrome and profound autism (no language or communication and not toilet-trained) she hadn't visited for a while with our trip to UK and my exams at Massey.
R is fascinated by the river and way back climbed from our trampoline into the neighbours garden and almost got into the river, so we are always very cautious. Usually he stays strapped into his wheelchair and watches his favourite DVD while we have a coffee, but our DVD player was broken and he wasn't so happy watching TV. My friend suddenly said "It's quiet" and we realised R had slipped out of his chair belt and must be upstairs - usually he just climbs into my bed between teh sheets if he has a chance - so I didn't especially rush to look for him, but just went to check if he was in the front garden - he likes to sit by the gate hoping for it to slide open. Suddenly I heard my friend scream and raced upstairs to find her pulling R back over our balcony - he had seen the river from our upstairs lounge and had climbed over the balcony to get to it and was hanging by his hands. Very scary

UK trip

some photos of the recent trip

the measles that wasn't

Last week all three boys were sick (Paul, Isaac and Noah). On Sunday Isaac had been off his food but there's nothing really remarkable about that so I'd not taken any notice, but when I changed his nappy I noticed he was really hot and had a terrible nappy rash which I then realised extended all the way up his trunk.
He got worse through Monday, ate nothing and hardly drank and we started looking up measles on various websites as that was what his rash resembled. On Tuesday Noah woke up with severe earache and a temperature and wouldn't eat and Isaac was so hot and lethargic that I skipped going to uni and phoned the GP. However by then Paul had chatted to the lab staff at the hospital who said there was measles going around so we canceled the GP appt not wanting to infect anyone there and decided Isaac had measles - a bit odd as he'd been fully vaccinated.

Paul did his clinic on Tuesday afternoon feeling rather unwell and then came home to bed.

Isaac improved for the better in the middle of the night climbing into our bed at 2am and constantly signing banana until i brought him downstairs and he ate his first food for 3 1/2 days.

Next day Noah came out in the same rash but was not so unwell as Isaac had been - we thought this was odd as he too had been vaccinated but as they have DS they are always a bit immunosuppressed so maybe the vaccine hadn't taken properly.

By Friday everyone seemed a bit better so I dared to go to my lecture at uni leaving Paul in bed and the boys in front of the TV.

I got a text from Paul saying he thought he had Koplick spots in his mouth - these occur before the rash of measles - so as he was in contact with so many immunosuppressed leukaemia patients while he was feeling unwell at his clinic, he thought he shoudl see the GP to see if it really was measles so the hospital would know if his patients needed immunoglobulin.

Although he wasn't convinced it was measles, Isaac fulfilled the reporting criteria so the GP phoned public health who said the boys had to wear masks and get blood serology test done, then Paul had to put himself in isolation until the results came back. The infectious disease unit at the hospital had to be informed

Wearing masks was a good way to get quick attention at the laboratory, all very exciting

Paul got Monday off work feeling very guilty as by then he had recovered without any rash.

Results came back negative, so not measles just a nasty measles like virus and now we're getting back to normal but with two much thinner than usual boys.

cold school holidays

We're into the second week of school holidays and have just spent a weekend of not leaving the house where only Noah and I were here for meals.
I think that is a record for the smallest family size - just me Noah and Isaac (with Isaac only eating weetbix and ice-cream cones!) Paul is at a conference in Japan (and has bought me an Ipad 2 duty free as my late birthday present - this has made both me and Noah very excited - Noah as he will be able to use the current ipad much more and we will use it for home school stories for Isaac) and lily and Hannah were at various parties and sleep-overs.
It may snow in Auckland today - first time since 1939 and certainly felt extremely cold as I walked along the river to massey with 4 layers, jumper, cardigan, leather jacket and cagoule plus scarf tied round my ears and gloves - brings back strong memories of UK!
It's working quite well having babysitters for the three days I'm at Massey because they tend to play with the kids More than me so the kids love it and I like it as it stops us getting on top of each other too much.
Isaac is developing still , he can jump now with both feet off the ground and chooses to do this to a CD of Susan Boyle, he even signed music and pointed to the CD player while singing to get me to understand what he wanted!

Lily cataract surgery, Isaac eating

This is my week of holiday from uni, as exams and even my between semesters contact course have finished. Hopefully I will feel more relaxed about study next semester as I have even more papers then. I'm taking "bicultural perspectives on psychology" which hopefully will give me some idea of Maori culture, also "forensic Psychology" and "individual differences" plus finishing the second half of the brain and behaviour paper
Anyway this holiday week I get to have three visits to the hospital with children.
Today's visit has come and gone, with Lily having cataract surgery. We got there at 7am Lily had her general anaesthetic (they said they were happy to operate under local as is usual for cataracts but she said no) charmed the staff, so that a pharmacist considered dressing as Gregory "House" and coming to visit her, and we were out by 11.30.
She is sleeping it off now but can then play on the new playstation 2 games we bought her - she is very pleased with the pirates of the Caribbean one as she thinks with her eye patch she looks like Jack Sparrow!
Tomorrow we go back to the hospital for the patch to be taken off and then we've told Lily her vision will have improved by Midnight on Wednesday when she is going with Joe and Hannah to watch the premier of Harry Potter.

Joe has a job interview in Auckland today for a computer programmer job, he had a preliminary interview on Thurs and they wanted him back, so that must be good news.

Isaac is doing really well, for the first time ever on Saturday we bought him his own happy meal at McDonalds and he managed to eat more than half the burger most of the chips and about half the chocolate milkshake. This would have been unbelievable to us when he was tube fed and shows what progress he has made.
He was seen at clinic and had managed to put on some weight too. He now weighs 12.85kg, this is still well short of his highest weight of 13.8 kg in August 2009 (so nearly 2 years ago) which just shows how overfed he was - no wonder he was in constant pain.

On Thursday this week he has ENT clinic and I think we may push for hearing aids as he is really trying to speak now copying intonation but not words. it is very cute how he does "round and round the garden"