clocks change but not for Lily

We have now changed to daylight saving meaning we had one hour less sleep on Sunday - I was a bit late for church because of this and because I'd spoken to my mum on the phone without noticing the time and because Hannah kindly offered our big car to a family at church who are without theirs for ten days leaving not enough seats for all our kids plus one sleeping over, so that Hannah and I had to walk to church.

We got round to changing most of our clocks but forgot about Lily who because she can't tell the time never uses her watch or mobile phone time on Sunday.

Next morning I was at home chatting to Lily (because it's school holiday here - most Mondays I would be taking Noah to school) when I noticed it was ten past nine and said "What time are you supposed to leave for work?" Lily said "I go at nine oh oh on Mondays and its only eight one 0h now" That's when I realised we'd overlooked her and she had to run like mad to catch the bus. There are loads of little things like this that are quite irritating looking after an adult with DS even someone fairly independent like Lily. Another one is that because she can't read, she doesn't bother to open her mail each day - I must make a point of asking her if she got any and seeing it myself.

We are still trying to encourage Isaac to eat without getting frustrated ourselves. He has had just 500mls of Nutrini overnight for the past two days in the hope that he will become hungry and thirsty during the day. His first response though is still to throw any food or drink we give him and it makes a big, big mess. We were brave enough to try a play picnic (encouraging him to play with food rather than eat it - you can see we chose a corner of the kitchen floor enclosed a bit by cupboards and covered it with one of Noah's brolly sheets) and the two photos are from that. Then I bathed Isaac and Paul just about hosed down the kitchen!!

wild weather and Paul's competition success

I was only half listening to the radio news yesterday morning when it advised farmers in the South Island to bring stock inside (I was more excited when Isaac heard a Canadian goose call as the 7am timer and signed 'dog') but now in hindsight I had never heard that before and should have expected a cold day!
Isaac was wrapped up in three layers and nicely covered with his pushchair hood and apron, but I just wore one layer and a raincoat and set off on my 10km round walk to ABCD therapy group.
On the way back it rained continously with a really biting wind - the kind of weather in the UK where you think 'snow is coming'
I got so cold that I had to go into a supermarket to warm up. I looked to see if they sold gloves and as they didn't bought a pair of socks to wear on my hands!!
Anyway this morning it's proof of how cold it was as we can see snow on the hills all around us - we have never seen snow by the windmills before.

Paul is pleased to have got into the semi-finals of a business competition run by NZ trade and enterprise. He and Joe have developed an on-line programme for warfarin management which has now taken over warfarin management for the rural Gisborne area of NZ and is gradually getting more individual customers sign up to it.
He's been asked now to 'give a pitch' about INR online in Auckland so will stay with Sam and Beth overnight, do his pitch then fly to Gisborne for a 3 day clinic.

end of Isaac's tube weaning trial

Today we've gone back to Isaac's full amounts of feed by tube, having learnt that the window between him being hungry enough to try food and being ill and weak with dehydration and hunger is extremely small!
It is also very hard not to pressurise a child into eating when you know how little food they've had and we don't want to end up as totally obsessed stressed out parents. So we'll still let him play with food each mealtime (with little hope that he'll actually eat any of it) and maybe will still tube feed him the bulk of his food overnight in the hope that he'll feel a little hunger during the day.
He had some enjoyable days not being tied to a tube during the day at all and the optimism we had was wonderful while it lasted! We are more hopeful now that one day he will learn to eat.

highest calorie baby food

While we were in the states we came across some pretty high calorie desserts - one of the good things there was that some menus are calorie counted, but the bad thing is how high the count can be -over 1000 calories for some desserts at the California pizza kitchen and I think the volcano (of brownie, cream and ice-cream with a sparkler on the top) we shared at the Rainforest cafe was probably higher still.
But at the moment I am trying to come up with high calorie things that Isaac will try. We have decided to only tube feed him at night now and drop his volumes a bit to make him a little hungry during the day.Because he has never eaten orally its a big scary experience for him to have things in his mouth but today (just after Paul returned from a four day trip to the Philippines and was here to witness) he managed to swallow a few mouthfuls of my high calorie invention - nutella mixed with cream to a thick liquid consistency.
We had to appear as though there was nothing momentous about the occasion (the more fuss you make the more likely it is the child will use food refusal as a control battle) but were actually very excited! Perhaps we can dream that one day Isaac will decide how much food he needs for himself and eat it like any other child!

A jet lagged Paul has just gone off with Lily to watch Noah be "under the sea' in his school production. It is wonderful how all the children with special needs are included - one very hyperactive little boy with autism who has to have his hand held at all time is starring as a pukeko ( a NZ bird and I have no idea how that fits in with under the sea!) and his special needs teacher is starring as a bush right behind him!

testicles on my corner

Noah is getting very excited about his upcoming school production this Wednesday. He is playing the sea and we've been instucted to provide black leggings and a blue top.
Noah has told us the school will then put "testicles on his corner". This had us rather flumoxed, so he put his hands out to the sides and showed us his 'corner' (arm pit)! As for the testicles, it seems most people call them tentacles!!

keeping Noah safe at Disneyland

Here's a few more pictures of our time at Disneyland and one of Lily at Madame Tussuad's - this had just opened in Hollywood and was her favourite part of the trip - it was just perfect for her as it concentrated on current Hollywood stars mostly, rather than historical figures as the London branch does.

I thought I'd just write about keeping Noah safe in case this helps anyone else with a child who likes to run away.

• We wrote him a little book in advance - this had lots of positive statements about his behaviour interspersed with info about Disneyland - "I will hold mummy's hand at passport control and baggage claim" "I will stay in the hotel room unless mum or dad is with me" "I will try to stay with mum or dad. If I can't see them I will find a mummy and say 'I'm lost' " (This last one because Noah has no definition of 'lost' he just thinks it's an adventure!)
• We wrapped a little gift, let Noah see it and built up the excitement about it and how he would get it if he stayed in the hotel room when he woke up (our real concern was that he wold get out while we were still sleeping - he did this once in a hotel in Sydney and it was not a good experience!)
• Noah wore a hospital bracelet with Paul's mobile phone number on and a note saying we would pay for calls (as they would have to go through NZ). The bracelet stayed on till the last day although the ink was smudging a bit by then. When Noah somehow removed the bracelet on the last day I wrote on his arm with indelible marker but this wore off in the intense sweaty heat.
• We had some ready prepared "WANTED" posters with a photo of Noah, a sentence saying "Because of my disability I sometimes wander" our flight details, hotel phone number and Paul's cell phone. We gave one to the hotel reception and kept one in my bag and one in Paul's back pack in case we lost him and needed a photo. Paul also had a photo of Noah on his cell phone - we meant to take one each morning to show what clothes he was in each day but forgot.
• We took with us, a sign to stick on the inside of our hotel room door which said "Noah STOP don't go out unless mum or dad is with you" We also had a red cut out outline of a hand which we put by the door handle - this is the symbol they use at Noah's school on things he can't touch.
• We put a chair which would make quite a noise when moved by the door for the first few nights until we were fairly confident that he wouldn't leave
• Most of the time Noah wore a wrist band attached to a wrist band Paul or I wore. He could undo the velcro if he wanted to get away, but he actually quite liked the security this provided.
• Getting a Guest Assistance Pass from Disneyland was great as it meant much less queuing and times when Noah was likely to get bored or over-stimulated and display silly behaviours. Disneyland is very accepting when it comes to special needs and just being in that kind of atmosphere helped

With all this preparation we could relax a bit and only had one occasion when Noah left the room alone which was when he decided to get himself some ice. Noah is actually quite proud of himself for managing to stay safe and I think it has been a little boost to his self esteem.

We're trying to settle back to everyday life here now. Our focus is on Isaac now, as the ENT doctor feels he needs an operation to insert grommets (ear tubes). We are also seriously considering trying to do a tube weaning programme from Austria by email (If we can get the needed support from hospital staff here). The skin around his button is becoming so red, sore and scarred and it impacts our life so much (and Isaac's even more) having a tube fed child. When Hannah phoned us in USA and said she'd had to replace Isaac's button and call the Homecare team to check on it, we began to realise just how many potential issues there are.

We are trying to do the playpicnic the Graz clinic suggests (presenting lots of attractive food for the child to play with and touch without any pressure to eat) and Isaac can make a great deal of mess very quickly!

back from Disneyland

We are still all alive and well and Paul, Noah, Lily and I had a great holiday in Disneyland. I am so grateful for the tip to get a guest assistance pass, it was a bit like that credit card ad, "Disneyland, one million dollars, Guest assistance pass, priceless" - we went immediately to the relations office and showed a medical letter about Noah's behaviour issues and said how he found waiting in queues really hard. They gave us a pass for all 4 of us to enter rides through the exit with no queues and while we were there they noticed Lily was wearing her 21st birthday hat and said that Disneyland was free on your birthday so as we already had her ticket they gave us a $72 gift voucher (price of one day entry) instead. A wonderful start to the holiday.Here are a few photos and I'll write more later.

and sorry I can't get rid of the underlining!