Thursday, December 29, 2011

leaving the house

After the excitement of Christmas and hospital, it was good to have a bit of down time yesterday - although unfortunately Paul was back at work and quite busy.
Isaac is very clingy and miserable and looks like he's lost weight - hopefully just due to the total absence of his usual routine and people. Noah has also lost weight and is back to some annoying ways - like pulling all the wires out of the new kinect xbox they got for Xmas. We are still having a lot of trouble managing his ileostomy and I will maybe have to blog some of it just so I have a record I can refer to. But I have realised that we have been home a week now and Noah has not left the house!! I have been luckier leaving it three times (Xmas eve service, a short Xmas day stroll with Paul and a rushed Boxing day evening trip to the Warehouse with Hannah) but I feel I need some fresh air. So the plan today is go for a walk - I am leaving Noah 5 minutes while I write this for the idea to take root and then it will be time to force him!

ileostomy notes
Boxing day- change bag afternoon for leakage
Tues- change afternoon for leakage - same place
Weds - liquid output 250ml am, loperamide 2mg and marshmallows, leakage change bag lunch time and one hour later for major leakage, further loperamide at 4pm
Thurs - first thing bag change for leakage, green liquid output ?blue drink yesterday, cut edge of bag to avoid scar, metamucil given

Monday, December 26, 2011

Christmas celebrations























Rachel and Hannah babysat so Paul and I, Beth, Lily and Joe could go to midnight communion. This is a very special service at our church and incorporates the choir as well as modern music.


We got to bed around 1.30 am and at 5.15 Noah was excitedly awake so we let him climb into bed with us.

After a while I noticed the bed was wet, and our first present of the day was the contents of an ileostomy bag on our sheets! The day started with a bath, change of bag and some laundry, so for the first time ever the boys are dressed in the photos of opening the stockings!


We are getting better with ileostomy bags mainly from reading tips on line, so this time we warmed the bag on the aga, spent a long time drying the skin first then a long time making sure it stuck really well. We also dressed Noah in briefs as opposed to waist height undies and in swimming type shorts that close with velcro rather than a waist (this followed an urgent Christmas Eve shop trying to think outside the box clothes wise) This bag lasted almost 36 hours - our longest yet and only started leaking when Noah dressed himself in the larger undies again and pulled them right up dislodging the bag.

We had a traditional Christmas lunch and then our Christmas play written by Lily and Paul- the "Glee" nativity - some of the performers had never seen an episode of Glee but still the show went on until everyone rolled around laughing! To finish we all sang for Noah "I'll be home for Christmas" then he went round giving us all a hug.

Today we had Anika and James's family round for a BBQ and the weather was beautiful - I can not remember NZ ever being this hot over Christmas. I guess I am still a little stressed as I took a dessert pie out of the freezer, did not realise it needed cooking and decorated and served it raw!! Luckily everyone was too polite to mention it and could eat pavlova instead!

"All I want for Christmas is you" - Xmas Eve







We got a photo of all the kids together when Beth, James, Sam and Anika arrived on Christmas Eve to join Joe and Rachel.


Then we played "All I want for Christmas is you" and Noah instructed everyone to point at him for making it home from hospital!

Saturday, December 24, 2011

Managing Noah's ileostomy - day 1

I changed Noah's bag just before we left hospital to a special children's bag. Unfortunately I think these are meant for quite young children as it leaked and needed to be changed twice yesterday whereas it should only need changing every three days.
This has been a bit rough for Noah (and for us, although the baptism by fire may have made us a bit more confident), It is quite a process to peel off the backing without hurting him or getting the contents over us or him, then the skin has to be absolutely clean and dry (to prevent skin breakdown) before applying a new bag with the hole cut to the size of his stoma (without cutting the bag itself -leading to leaks) the inside of the hole must be smooth and it must be applied directly over the stoma. All a bit complicated especially if the boy fights - we had Hannah hold his legs, me his arms while Paul peeled the bag off. Luckily applying a new bag doesn't hurt at all so Noah cooperates for that.
Noah did get to have a quick bath before we reapplied the bag, although later I read that's not a great idea, it seems he will have to get used to showers now. He is doing well really. He is getting used to the ileostomy and helps to empty the bag and clean it with toilet paper. He is subjecting it to a few tests that most adults wouldn't - like climbing out of Lily's bedroom window. He even lifted up his t-shirt and said to someone "Look, pooh in a bag!" I hope Paul and I can become so down to earth about it too!

Friday, December 23, 2011

Apologies and our (outdated) Christmas letter

Apologies to all our NZ friends - and even family, Caroline - who will not be receiving a card or gift from us this year. We have lost ten days of our life to hospital so it is only the Christmas stuff I did before then, that is happening (luckily that incldued all UK cards). We have enough presents bought already (and I have been prevented from my usual top-up last-minute shopping) and I was planning just to give money to the older ones anyway. Paul and I did a supermarket shop last night and we will just do without anything we forgot.
We are still goign to have a wonderful Christmas and I think in many ways spending time in hospital is a good reminder of the first Christmas and the stress and uncertainty surrounding it.
This is our Christmas letter as received by those in UK, which obviously doesn;t mention Noah's recent escapade so is outdated.

We have just put up our new ten foot Christmas tree that I had been hankering after for our front hall since we built the new house. I first showed Paul an even taller and much wider Christmas tree that cost twice as much so this one seemed cheap in comparison! After we spent ages decorating it with teddies and red baubles Hannah told me “It looks just like a department store tree.” We’re not sure if that is praise or not!
This year has been the year of the wedding (times two) plus Isaac starting school, Noah starting secondary school, Joe returning from Korea and getting a job in Auckland, Rachel and Adam moving to Queenstown and me returning to study and discovering how slowly my brain works.
Beth and James’ wedding in April was the first time all eight of our children had been together for years and now they will all be together again on Christmas day, so we are really excited about that and Lily is planning a nativity play based on the TV show “Glee” –her new obsession. So far she has cut up a cardboard box for Joe to wear on his back as the donkey!
A quick rundown on family and events during 2011:
Joe – came back from Korea in April, worked for a while on INR online ( – a computer programme for warfarin management developed by Joe and Paul which the new National (conservative) government have pledged to roll-out for use in pharmacies nationwide) then moved to central Auckland and got a computer programming job. He sent us a text as the rugby world cup started saying how busy it was by his flat.
Sam and Anika – had a holiday in South Africa in February so Sam met Anika’s extended family. Anika has qualified as a registered psychologist and Sam continues as a food technologist developing muesli bars. They may move to OZ in 2012.
Beth and James – got married in NZ in April and then blessed in UK in Oct, but live in Sydney. James has been upgraded from doing a Masters to a PhD in ancient history at Macquarie uni and Beth commutes to central Sydney to work at a law firm amongst the poshest shops (Jimmy Choo, Tiffany and Prada).
Rachel and Adam were planning to move to the Gold Coast or Brisbane but Adam got offered a good job in Queenstown so they’ve moved there. We met them earlier in the year at the Taupo iron-man as Adam’s brother who is a firefighter was doing it as was my brother Jon. Both finished with really good times.
Lily has just had the movie premier of her latest movie about people with Down syndrome transferring from school to work. She loves performing to an audience so spoke really well and was delighted when she received a bouquet of flowers. She has just voted in the recent election – she told us she planned to vote ACT (a far right party) as she likes acting but we managed to dissuade her! Next year she will try flatting with two friends who also have Down syndrome. We have far more concerns about this than she does – her only worry is giving friends ‘change of address’ cards.
Hannah turned 21 in January and followed Lily’s lead by choosing a holiday in Disneyland with the family. This was great, beautiful weather but very quiet as all American kids were in school. Hannah did her first social work training placement working with adults recovering from head injuries. This meant she had access to lots of arts and crafts and she made us some lovely things as she worked alongside her clients.
Noah is enjoying school and is proud to be able to walk there himself. There were problems for the first few days as he thought this was an opportunity to walk anywhere he liked (especially to nearby Savage Crescent – his favourite road as it has 8 roads leading off it) but this eased once he had explored all the possible routes around his school and done lots of weekend “dead-end walks” these are exploratory nieighbourhood walks where we walk all the way round cul-de-sacs. His behaviour is gradually improving and he is longing for puberty to start (it may be, as he now stays awake until almost 10pm and then doesn’t want to get up for school in the morning).
Isaac is still a rather fragile little boy, wearing size 2 clothes at age 6, and not having much language. Still he is a happy little boy and no longer in pain, so he has made great progress since his early years. He currently loves the teletubbies and was so pleased when we managed to buy four little beanie-baby teletubbies in the UK. He enjoyed the plane travel sitting cross legged in his economy seat which was so big for him, watching his portable DVD player – he looked like a mini-business man!

As for Paul and I – Paul continues to mostly enjoy his work as a haematologist and is now wanting to write a few medical apps for the IPad, I have found study quite tough, especially when my life experiences don’t fit with the blanket statements we are taught (forensic psychology from a social justice perspective was a particular problem to me!!) but now realise I like giving my brain a work out so will be exploring returing to some kind of work next year. We have also taken up bridge lessons and play much better now we obey a few rules rather than bidding totally idiosyncratically as we did as students! We really enjoyed seeing so many of our extended family this year, first at the actual wedding in April and then at the blessing in UK.
We wish you all a wonderful Christmas and New Year.

Thursday, December 22, 2011

home -after 10 days

After seeing every other patient on the ward home before him, it was finally Noah's turn.
He first had his staples taken out this morning and put up quite a fight needing three of us to hold him down - he then apologised to the nurse for the fuss!
I changed his ileostomy bag for the second time and he now has a more child sized bag. We have strict instructions to measure his pooh (the joys of parenting!) and we have to aim to keep the output between 250 and 350ml day, any more and we have to contact the surgical registrar to see if he needs IV fluids again, any less and we have to cut his loperamide dose. We are going to get good care from the district nurses - one phoned after I'd only been home for an hour.
Noah said the things he wanted most about home were his own bed and an internet connection (for google maps) but he is now tucked up in Lily's bed listening to the script for this years Christmas play.
Paul is away at a clinic in New Plymouth and gets back tonight, Joe and Rachel arrive tomorrow and Sam, Anika, Beth and James on Saturday - I am just beginning to realise how much there is to do to prepare for Christmas but thought I would first update the blog with our good news.
I have promised Noah we will take a Xmas photo of all the family around him singing "All I want for Christmas is YOU".

Tuesday, December 20, 2011

Doctor Noah




Noah is much more active. He found the controls for his bed and has managed to put it into all sorts of different positions. At one stage he had the bed as high as it would go and on another he was lying on about a 45 degree angle almost sliding out of bed. He has also been praticing bandaging and managed to bandage his own ankles, legs and arms.




It is hard to believe he had major surgery only a week ago. Today he did say his tummy was hurting a bit, but he had just gone down a slide and dropped about 6 inches off the bottom and on another occasion climbed through a tunnel on the climbing frame.

Hopefully he will be home very soon.

Monday, December 19, 2011

real clothes

Today is one week from admission and Noah put on real clothes again to go for a walk (took a bit of persuasion as he now in a rather teenage way like lying in bed in pyjamas being waited on by nurses).
I'm not sure whether the elastic waist of his shorts is supposed to be above or below his stoma = it falls naturally directly on the stoma (usually the stoma position is carefully planned before surgery but obviously this wasn't possible in Noah's case)
I changed the stoma bag for the first time today with the stoma nurse there to guide me. Noah covered himself totally with a sheet in the hope that we wouldn't notice him and would leave him alone then fought for a long while. The nurse said "But he was so quiet last time" so we explained that was how we knew he was sick!
Anyway I did it and Noah showed a bit of interest and helped roll up the end of the bag.
He is still producing too much fluid in the ileostomy to be able to replace it by drinking so we will probably be in till Thursday by which time it is hoped the ileostomy will have settled somewhat.
I'd explained that Noah loves bubble gum flavoured pedialyte but children's ward wasn't able to get any from hospital pharmacy. (All children prefer the bubblegum to the fruit flavour - that's why children's ward had run out) However by the entrance to the hospital is an independent pharmacy and they had a bottle and were able to get five more in by early afternoon and Paul was able to prescribe it so it only cost $3. Noah immediately drank 2 cups of this which may even help replace some of the minerals he is losing.
He will have his blood electrolytes measured again tomorrow and hopefully his haemoglobin as he looks a bit pale. He has walked a bit further today (he was allowed a two hour window without his drip which meant he could leave the ward) but gets very tired. Paul also has to work this week as many doctors are off for holidays over Xmas, this meant I had both Isaac and Noah with me which was a little awkward at times. On Weds and Thurs Paul has A clinic in New Plymouth so it will be even more interesting then.
Now need to catch up on washing, bath Isaac and maybe think about how far behind we are with Xmas preparations while I (Angela) have an evening at home.

Sunday, December 18, 2011

Riding and walking






Improving even more today. Only one drip left. Noah must be getting better as he created more fuss having a plaster removed from his drip site than having the drip put in. A bit more of the real Noah defiance today.

"I do not want to go for a walk",
"I do not want to get out of bed",
"I do not need a shower"

Early in the day we took Noah off the ward in a wheelchair. My (Paul) driving was a bit erratic but Noah seemed to enjoy racing down the Hospital corridors. We went to my office for a treat and looked at one of Angela's hairs under the microscope (couldn't manage to find one myself to pull out!). Noah enjoyed this but got tired very quickly.


However his recover is amazing. This evening we went for a walk to the main entrance of the hospital.
Today I think that Noah (and I) are beginning to realise that it is a big thing to have an ileostomy. After his shower today Noah looked at himself in the mirror and cried. Made us all a bit sad.






Saturday, December 17, 2011

Noah's air bag



Santa said that as Noah was so sick he could have an early Christmas present of epic mickey T'shirts. Here is Noah wearing clothes for the first time since Monday -proudly modeling the t-shirts.












I (Angela) am home for Saturday night. I walk in the front door of home and am overcome with weariness even though I feel OK while at the hospital. My eczema is flaring up though which I guess shows I'm more stressed than I realise. I have been catching up on emails and its wonderful to read all the messages of support and realise how many people are praying for us.


Noah seems more of his old self today - he told his nurse she was "pathetic" and when I said that was very rude and could he please say something nice he said she was "unpathetic"!


He calls his ileostomy his air bag but he still doesn't really want to acknowledge it or look at it. He had decided that he could not be a 'cool' boy if he had a bag on his skin and told Paul that "cool Noah was dead and sick Noah was here" As he feels a little better he is beginning to believe he may one day be cool again.

He also told us he was scared as he thought he would be living in hospital for evermore!

He is reliving a little of his experience now - there is the story of a child having surgery on the wall of children's ward and he has slowly walked along to read it with Paul or I pushing his 'robot' as he calls his drip stand! We have to tell his story and compare it to the child on the wall, there are some differences - for instance Noah went to theatre fully dressed whereas the non-emergency child is wearing a hospital gown! We have to talk about his getting tummy pains (which he unfortunately blames on Paul's BBQ) coming to hospital, having an x-ray, then getting a drip and going to theatre.


His dressing was changed yesterday and again he didn't want to look at the wound although we took a photo as we know he will be interested one day - he has more than twenty staples in an incision basically vertically from his sternum to pubis, the original scar from his baby surgery looks very small in comparison.


There has been progress today in that all of his pumped IV medications have stopped (this makes much less work for the nurses) so he no longer has his IV paracetamol, gentamicin, amoxicillin or flagyl - I am hoping that not being on these strong antibiotics may help decrease the copious watery secretions from his ileostomy. He has started loperamide (immodium) to also try to help this and has learned to take the tablets so we are very pleased with him.

They have also stopped his maintenance IV fluids with the plan being that he will drink enough to cover this, so he is only on replacement fluids for whats lost through the ileostomy.


His catheter is out and he is walking (rather bent) to the toilet now and was disappointed this morning that there is no longer a few drops of blood in his urine as there had been the first few times after his catheter was out.

He is allowed to eat what he likes and is picking at a rather odd assortment of food - it is a novelty being able to choose from a menu - so he had rice, chicken nuggets and salad for lunch - ignored the rice and salad and Isaac ate most of the chicken nuggets while Noah nibbled one. Paul brought in McDonalds pancakes for breakfast and at the rate of one bite per half hour Noah finished one just in time for lunch!

Still he is so much better, bouncing back really, and the exhaustion and poor appetite are to be expected. He will need to be in hospital till he is not pouring so much fluid out into the ileostomy.


Tonight is boy's night with Paul and tomorrow they are hoping that Noah can go in a wheelchair to Paul's office for the treat of looking at blood films under a microscope! He was allowed to be disconnected from his drips for a few minutes today when we pushed him the route he took to theatre so we're hoping he can manage a longer time without being exhausted tomorrow.


We keep reminding each other of our Christmas songs - Noah's is "I'll be home for Christmas" and ours is "All I want for Christmas is you"!

Friday, December 16, 2011

Good progress








Noah has made a lot of progress today. Yesterday he was a bit weary but managed to get out of bed for a short time (on right), but today he is much brighter.






He had a couple of iceblocks and some chips. A bit exhausted now but more like his old self. He thinks the "cool" Noah is back.



Noah today


















Cool Noah today



Dr Lily House


Lily thought Noah had Mickey Mouse fever and offered some advice.


video

Some tubes out

Noah is bit brighter this morning. The nasogastric tube and Cather came out first thing. Noah did not enjoy this. Had a bit of a sad time. Noah finds hospital "too scary". He would like to be a 'cool' boy again but at the moment he is a 'sick' boy. Noah managed to get to the shower and even walked back to his room.

Wednesday, December 14, 2011

Noah in hospital photos

this picture is immediately post-op in the recovery room, you can see Noah still covered in iodine
and trying for a few minutes without oxygen


taken tonight with Noah trying to smile. The NG tube has also been fastened more securely after a mishap where Noah pulled off his oxygen mask and the ng tube came out a little. For the rest of the day yesterday they thought there was nothing in his stomach until he proved this wrong with an enormous vomit and then drainage of 350ml of nasty stomach contents once the tube was replaced and unblocked.



Noah perforated bowel

Life changes so fast. We had a really good week with all sorts of Christmas events and at the Friday Down syndrome party I even dared say "I've stopped having to worry about the boy's health ."
He was fine on Sunday lunchtime then suddenly got tummy ached and just lay down and complained and wouldn't even get off the couch to watch a personalised santa message on the internet.
He went to sleep OK but still had tummy ache din the morning enough that I didn't want to leave him to take Isaac to eye clinic. When he said his shoulder hurt, I phoned the GP surgery(shoulder tip pain can be a referred pain from the diaphragm being irritated) they couldn't fit him in till 2.45 but when I phoned Paul obviously worried, Paul said he'd go down to children's clinic and talk to a paediatrician.
We thus bypassed the usual referral system and were seen at 1pm, x-rayed immediately which showed air under the diaphragm and dilated small bowel (signs of perforation) and in theatre by 3.30.
The paediatrician involved is the same one who was miraculously present at Noah's birth (who we knew from our church) and he is now literally days away from retirement so Noah will be one of his final patients.
They considered airlifting Noah to Wellington - the paediatric surgery unit - where his previous bowel surgery was done. The paediatrician spoke to his original surgeon in Wellington who said it was such an emergency though that Noah should have surgery in Palmerston North (this is of course more convenient for us).
Two and a half hours later (and some heavy duty antibiotics and a lot of questions about what pain relief as Noah is probably allergic to morphine) the surgeon came to tell us there was a very small hole just where the small intestine exits the peritoneum (Noah has no large bowel since his neonatal surgery) but that the lower bowel looked chronically obstructed functional not mechanical (ie not a blockage or twist) so he had spoken to another surgeon in Palmy and the original surgeon in Wellington and they all thought Noah should have an ileostomy to avoid a further perforation if they just repaired the hole and left the chronic obstruction.
The theatre and recovery room staff were wonderful and it was Hannah's best Friend Heidi from primary school who was the nurse on for Noah and of course had known and cuddled Noah as a baby.
Noah came back with 8 "tubes" as he is already proudly calling them - a catheter, abdominal drain, ileostomy, sats monitor lead, oxygen mask, nasogastric tube and two IV lines.
48 hours later he has dropped the oxygen and monitor but his gut is still not working so he is needing quite complicated fluid and electrolyte balancing along with pain relief - this includes IV panadol which I had never heard of.
Paul is sleeping there tonight and I plan to bath Isaac, shower myself and have a long sleep in a comfortable bed.

Thursday, December 1, 2011

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.




Sunday, November 27, 2011

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.

Thursday, November 24, 2011

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

Saturday, November 19, 2011

UK trip












some photos of the recent trip

Friday, September 2, 2011

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.








Monday, July 25, 2011

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!

Monday, July 11, 2011

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"

Tuesday, June 7, 2011

girls weekend

Hannah, Lily and I had a lovely weekend away in Sydney seeing Beth and James, while Paul, Noah and Isaac had a boys weekend back home - this is how we sold it to Noah!
We got some very good prices on flights from Wellington - but at horrible times - had to leave Palmy at 2.45am for the two hour journey to Wellington airport for the Saturday flight and got back to Wellington at 11.30pm last night so back home at 1.30am.
Joe was picking us up so I sent him a text saying we'd landed to which he replied "I thought it was 1am you got in not 11pm - have only just left home" luckily he was joking and was waiting for us once we got through passport control!
Lily gets so tired on these trips that we planned rest times for her, she stayed at the hotel and watched DVDs while Hannah, Beth and I went on into Sydney to Paddy's markets - and some cheap "Jimmy Choo" look alike bags, then to an ABBA exhibition at the powerhouse museum.
This was great, Beth laughed when I said "Look there's the album cover everyone has" because this really showed my age -its years since records went out. They had the costumes they wore to the Eurovision song contest and we sang along to some songs and were in tune 31% of the time!
James came into Sydney late afternoon with Lily and we all went to the show Mary Poppins. Some wonderful singing but not in the same league as Wicked which we saw when we were last there.
On Monday it was queens birthday w/e in NZ but an ordinary working day in Oz. Lily went to watch a movie with all our bags, and was the only one in the cinema while Hannah and I shopped in the MacQuarie centre.
they had an ABC shop and I managed to get a puppet teletubby which Isaac loves
We stopped in the city and had lunch with Beth, then onto the airport and home on a totally full flight, with "seat only" - no movies or food. Still its only 3 1/2 flight and was a great w/e.

Saturday, May 14, 2011

Wedding videos

Before the wedding

video


The wedding service



After the wedding

video

Monday, April 25, 2011

Enjoying school holidays

We've had a good break from school and Massey so far. Beth went back to Australia on Tuesday and on Wednesday Paul had a clinic in New Plymouth so the boys and I went with him.


I was SO SO tired after the wedding and was able to have a snooze each afternoon while the boys watched a DVD at the motel.


We stayed till Good Friday and It's been the long holiday weekend since then, so we're already half way through the holidays without having to think of anything to do.


Next week we're going to the Wiggles om Wednesday. It will be the first time Isaac's been to the theatre so it will be interesting to see how he does.

Isaac is getting a lot of enjoyment out of simple things now. The photos show him sitting in a box, which he loved being pulled along in, and in the bath while on holiday where we could only just see his face peeping out above the bubbles.






Noah spends a lot of time "sorting out wires' - one of his autistic like behaviours. We have two boxes in the garage we just let him have, but he can make an incredible mess with them as he is proudly displaying in his photo!

Tuesday, April 19, 2011

more wedding photos





wedding photos at last!






A wonderful wonderful wedding brilliant speeches, beautiful people, lots and lots of tears

the boys both made it down the aisle at the right time (Noah then played with maps on the IPad and didn;t even watch Beth and Paul come down!)

these first photos are just our snaps before the ceremony (too rushed to take any more once things started!)

my tears started seeing Beth in her dress, then gettign all 8 kids together on the stairs then seeing Beth with Paul.

It was just very very special, all the family together, dressed up and on top form.

Friday, April 15, 2011

Lily thought she'd missed the wedding

The groom's twin brother David is to be best man and photographer at the wedding. To make life a little easier he decided to take a few photos in advance on Tuesday. Rain is forecast for Saturday and Tuesday was a glorious day so he got some really good shots of them in the rose garden where James proposed to Beth and by the law books in the central library. Lily didn't realise this was happening and as she arrived home, there were James and Beth in all their wedding glory. Lily said in a rather subdued manner "You look nice" but she looked like she was about to cry. When Beth asked her about it Lily said she thought she'd missed the wedding! Poor Lily. So Lily now knows that Beth wouldn't dream of getting married without Lily there and preparations continue.


Paul had yesterday and today off work so we went to the supermarket and did our biggest shop ever (still only got 20c a litre off petrol though!) ready to host a kitchen tea, a bridesmaids breakfast (where the guys will cook!) and a Sunday brunch. Beth says she'll invite everyone at the reception to this so I hope they come as we now have enough food for about 100!


My brother Jon and his wife Bev fly in from Sydney this afternoon, my sister Carolin and family arrive soon after lunch, Rachel and Adam late this afternoon and Sam and Anika late this evening. We have a rehearsal at 5.30 then a mad rush to get Isaac and Noah to bed before a family meal at a local restaurant 'Bethany's' we should have 13 at that and then 15 for coffee afterwards once Sam and Anika arrive.


We have made Noah a social stories book about the wedding on the ipad (using stories2learn app) some of the pages say "I will be a page boy, I will start the wedding" "I will go in a smart car with ribbons on it" - he loves this one as ribbons and wires are an obsession for him "On Saturday we will have a bridesmaid breakfast at our house. I will help dad cook" - he is a bit worried he will burn himself as he know thins we expect him to cook us a full meal! "Vicky will play the piano and I will walk slowly down the aisle." (Vicky is the bestman/photographers wife - so we are fully using guests! "I will smile at everyone then I will sit by mum and watch dad and Beth walk down the aisle" - we have practised this a little and get quite a lot of grimacing but I'm hoping true joy will take over on the day - Noah choose the photo to accompany this page as


"I will sit quietly while James and Beth are married then I will sing loudly "How great thou art" - the kids all love this song and I'm sure Noah and even Isaac will join in.


"At the end I will hold Beth's train and walk out of church" Noah thinks this other meaning of the word train is hilarious and keeps telling us he will carry a Sydney underground train - we actually tried to practise the train with Beth and Isaac while Beth was dressed for the photos but unfortunately Isaac thought it was a parachute game like they played at school and immediately tried to get under it - it will be interesting to see how he does on the day!


"David and Diana will take lots of photos. I will do what they ask me to do."


"I will sit quietly and listen to the speeches"


"I will stay up late dancing and dancing. It will be a lovely wedding." Noah has again chosen the photo - seems like we'll have a wild 1970s time!

Saturday, April 9, 2011

wedding countdown begins


Joe is home from Korea now. Here we are meeting him at the airport last Sunday. He was very embarassed to have to pose for the phto - he'd forgotten what our family is like in his two years away!

It was great to see Joe again and he's lost 30kg! Isaac was totally overwhelmed. He was happy to see Joe and asked to be picked up but once Joe did Isaac scratched him till he drew blood!

Hannah has flown to Auckland. Beth flew from Sydney to Auckland last night and as I write the hens night should just be beginning there, attended by all the bridesmaids apart from Lily along with Rachel and Anika.

Tomorrow Beth and Hannah catch the same flight to Palmy.

I am racing like mad to do as much Massey study as possible today and work on my next assignment now so that once Beth comes I can concentrate on the wedding.

it is gettign very exciting now and this time next week we'll be at the reception!!

Monday, March 21, 2011

Happy World Down syndrome day

Today the 21st day of the third month is a reminder that people with DS have three copies of chromosome 21. Down syndrome international have put together a video of people with Down syndrome from 45 countries and it is our Noah (and Hannah's boyfriend Thomas) who represent NZ - you can see the video by clicking here.
We've just had a great w/e seeing Beth who was over here for a few days to be bridesmaid to one of her friends. We've sorted out a few more details for her wedding which is now less than 4 weeks away! We also went to the dedication of Malachi (Beth's nephew to be) which was lovely.
Joe gets back from Korea in under 2 weeks and will see our house for the first time.
I am finding it very very hard work being back at uni after 30 years but I'm enjoying it. I have realised though that I was not at home doing nothing as I believed. it is very hard fitting in uni round the kids and tomorrow I'm going to have to miss a lecture as our babysitter is sick.

Tuesday, March 8, 2011

Marshmallow woman

Paul and I just had a weekend away together in Taupo to watch the ironman that my brother Jon and Rachel's brother-in-law-to-be Josh were in.
Jon was hoping to finish in under 12hours (his last one took just over 13 hours) and did easily
Josh is a 28 year old fire fighter doing his first iron man and finished eighth in his age group in 9 3/4 hours - a fantastic achievement

I high-fived Jon just as he approached the finish line and he then got terrible cramp in his legs and could only stagger forward so I felt rather guilty! It was quite good for him though as it meant he was really singled out by the commentator and got huge applause as the commentator said "Keep going Jonathan and in a few steps you will be an ironman!"

It poured with rain the whole day and meant Paul got a new pair of shoes - waterproof asics sneakers - he had to buy a pair of socks first and wring out the others.
I have decided I am as far from an ironman as it is possible to be and have renamed myself 'marshmallow woman" as I remarked to Jon I noticed nobody did the over a mile swim wearing a giraffe patterned swimsuit like mine or doing breast stroke with their head well out of the water, also they all used 4 kg racing bikes not a trike like I have.
It is hard to believe that there are over 1000 people who think it is worth while driving their body to the limit and swimming in lake Taupo for over a mile, then cycling for over 100miles (that's longer than the round Taupo race) then running a marathon.
For that they got a T-shirt and a towel, but if you took over 17 hours you didn't even get that or hear "You are an ironman"

It was a great w/e though, in spite of the weather and lovely to meet up with Rachel, meet Adam's family and see Jon and my nephews Jack and James. Time away without children is always wonderful, sitting in a restaurant without anyone knocking anything over, not having to stop children going onto the ironman course, recovering very fast when tired as there were no grouchy children to pacify.
It was good to get a warm greeting from them as we returned home - Isaac trying to say "mum" and "dad" and hugging us tightly. Noah proudly telling us he had made 100 photocopies of a page from his book (the printer now says out of toner). Hannah racing to leave as she'd had the kids all weekend. I appreciate the family much more after a little break!

Tuesday, March 1, 2011

Earthquake and starting Massey

My second day at Massey University and two minutes of silence to think of the victims of the Christchurch earthquake.
Such such a tragedy - watch this very moving footage set to the national anthem
I am so proud of the New Zealand spirit though and how people have reacted. This may be the push for us to become New Zealand citizens.

it is really interesting to be studying again after a 30 year break. It is wonderful how text books now try to help you learn and I am loving having time out from family just for me.
Isaac only goes to school from 8.50 till 12.30 but I've managed to arrange it that we only need a babysitter on Tuesday.
I am studying psychology, - research methods, cognitive psychology, biological psychology and abnormal and therapeutic psychology over this year which works out as half-time of a usual course.
I'm hoping it will integrate lots of what I've learned through my life experiences (with disability and adoption) with psychological theory and brain science.
Hannah has been great showing me round, taking me to my lecture theatres and I got to meet two of my friends who are lecturers and have a child with Down syndrome.

Monday, February 21, 2011

Noah and maps

Although Noah doesn't have an official diagnosis of autistic spectrum disorder he has lots of autistic type behaviours, he also had infantile spasms as a baby which is strongly associated with autism. We brought back a fantastic DVD from the states which hasn't yet come to NZ called "Temple Grandin" it is about a very intelligent woman who is autistic and is able to explain many of the behaviours and misunderstandings that autism causes.
So as a toddler and younger school child Noah was fascinated by bead toys (we especially didn't buy one for home until this obsession was lessening, as it meant he was always quiet in the paediatric waiting room which had a big bead set!)
He also used to like strings to trickle through his fingers and loved us to arrange the hosepipe round the garden so he could run along the path.
The behaviours have now changed into looking at maps and mazes and turning on the hosepipe and wetting everything whenever he can, but the past few days the behaviours have led to some difficult issues (for us - never for Noah!)
On Saturday I let him sit with the ipad looking at Google maps - he likes to find a long road and just keep following it along. I didn't check on him for too long a gap and so he got bored and peeled off and screwed up the life time guarantee Zagg screen shield that we had specially bought while in America and paid to have put on (a very fiddly job and a wait of 24 hours before using). So we were left with an Ipad that we couldn't let the boys use - and Isaac (who actually talks a bit when he's using the Ipad) was suffering as much as Noah.
Next morning, Sunday I decided to give the boys a bath before church and was puzzled that the water was only trickling out the tap. Paul had the bright idea that maybe Noah had turned the hose on and went downstairs to check. He found Noah had indeed turned on the hose which he had put through the garage window so the garage was slowly flooding. Thank goodness we discovered it so quickly, with the only damage being a few damp Christmas decorations!
We got to church, without of course the Ipad to keep Noah quiet (he doesn't go to the chidren's programme because of his behaviour) and luckily the pages of the Bible were just the right consistency for him to run through his hands (and it looks much more holy than the telephone directory his other book of choice!)
I managed to find a Zagg screen cover and an otterbox case for the Ipad on trade me so was very pleased (both these are essentials for using the Ipad for children with special needs and both are hard to get in NZ) and Noah was supposedly punished by being told he couldn't use the Ipad for 2 weeks (I hardly know why I do this as he learns nothing through consequences - it just makes me feel I am at least making some attempt to impose discipline)
Today Noah hadn't arrived home from school 25 minutes after it finished (we can see the school over the back fence and it is less than a 5 minute walk). I knew he would be thinking about maps and walking along routes he had planned but still got quite worried, phoning the school and Paul and sending Hannah out to search the roads for him. A teacher found him by the main school entrance, but when we talked to him he had crossed a main road twice and gone down an alleyway to a nearby crescent.
I have tried to tell him off and will collect him from school from now on (hard tomorrow as I'm at the hospital with Isaac) but its hard to get him to understand how worried we get when he disappears because he thinks we can read his mind and just know what he is planning.
It is so good to just talk to other parents of children with special needs sometimes just because they understand how different and much more stressful and expensive life is living day by day with our kids.

Thursday, February 17, 2011

Noah at school

School seems to be going OK for Noah.
He is so proud that he is able to walk to and from school by himself (we can see the school over our back fence) but I wasn't too pleased when he decided to come home by another route one day by leaving school from the far entrance.
He told us he had silence lessons, (which would be quite a good idea for Noah actually), but when pressed on whether he had to keep quiet or not we realised they were SCIENCE lessons!
He also got a bit confused as his vocabulary isn't that broad, so one night at tea time he told us proudly that the teacher had been very pleased with him that day saying "Noah I am so disappointed in you" - seems he had run off when the bell went for the end of lunch. We've now explained that just because it's a big word "disappointed" isn't a positive thing to say about someone!

Tuesday, February 8, 2011

cure for self pity

I'd been felling a bit sorry for myself lately as the children's behaviour makes it so obvious that they are very different and much harder work than other children.
But two things have just happened to change my thinking, one positive one negative.
First it seems that Isaac has finally finally learnt to DRINK! He tips his head right back and takes two or three swallows in a row. He has just had his first ever drink of nutrini and if we can get reasonable amounts of this into him we'll no longer have to worry so much about his diet and eating sloppy foods. It may even get him to put on some weight - he was back down to 12.2kg at his January hospital appointment and I think he lost even more when we were on holiday and out of routine.
Second my friend Bridget has just heard that her lovely Peter has relapsed with leukaemia, he was the first baby with Down syndrome that we got to know when we lived in Swanson, Auckland and I remember going to his "celebration of learning to walk" party with Isaac.
It is so so sad that the leukaemia has returned and after such a long four year fight to get his ALL in remission. I'm sure she'd appreciate your thoughts and prayers while they are faced with difficult decisions.
Suddenly the issues my children have fade into insignificance and my life seems wonderful after all.

Sunday, February 6, 2011

back to routine

It's a week today since we returned from our lovely Disneyland holiday for Hannah's 21st birthday. We had a great time there but unfortunately a severely delayed flight back (left at 2.30am rather than 9.15pm) - all my obsessional planning and packing lists paid off and we had enough snacks and clothes in our hand luggage to cope well with the extra time at LAX and then at Auckland domestic where of course we'd missed our connection to Palmy.
Hannah loved the shopping, American food portion sizes and all the fast rides at Disney. We bought a new car seat for Isaac that he can use rear facing Sunshine kids radian (250 American dollars rather than $600 in NZ) we also bought an ipad thinking we would make a great saving, but forgot they add tax at the till so it wasn't that much cheaper than NZ.
The Ipad has not been put down since we got it. I love reading magazines on it and we have some lovely apps for kids with special needs. It is lovely to see Isaac learning how to touch the buttons to get animal noises and it is even helping him speak as he say "Goodbye pig" as he touches the pictures in peekaboo barn.
Noah and Isaac have both started new schools and are very tired by the end of the day (which is rather early at 12.30 in Isaac's case).

Sunday, January 16, 2011

off we go

On Tuesday we are off on holiday to Disneyland for Hannah's 21st birthday and my sister Caroline and her family is staying here while we're away so it's worked out really well.
It also has encouraged us to do a few needed things like turning off and cleaning the aga - unfortunately it could do with fumigating now as I put a pair of shoes to dry in the warming oven and instead of an hour I forgot them for 24hours!! I now know how well asics trainers are made as all the glue melted and the layers separated!
Isaac has just had a paediatrician appointment and has gained 50g and half a centimetre in the last 6 months - he's still between the 3rd and 10th centile for Down syndrome though. I had also noticed that he has a slow pulse rate, sometimes just 60 - so he had an ECG, which just showed right bundle branch block from his surgery but was otherwise normal.
The paediatrician has given us a letter saying Isaac needs custards to give him fluid so we can hopefully bypass the security issues at the airport - we had a bad time at Manchester airport when we had to taste half the food we had and the opened jellies leaked in our bag!
Noah continues to display his impulsive sometimes wild behaviour but at least this is a positive at Disneyland as it means we can get a guest assistance pass so he doesn't have to queue for so long.
Beth continues to plan for the wedding and at last has found bridesmaid dresses she likes - (on sale at David Jones at a very good price)
The little bridesmaids are wearing ivory dresses with sashes to match the older bridesmaids dress colours. Noah will wear his smart suit if we can get all the mud out when we take it to the cleaners (He crawled across a muddy garden at a birthday party) and Isaac will have ivory trousers and top.
We're back on Sunday 30th Jan and Noah starts school on Feb 1st and Isaac on Feb 3rd - it will be good to get back to routine!