trisomy tribe

quiet weekend

2012-01-29T18:12:00.002+13:00

We have spent the weekend trying to keep Noah very quiet to avoid the reemergence of his prolapse. Noah's main stoma (the proximal one that works) is called "epic" as epic mickey is his favourite computer game and it is supposed to be helpful to name your stoma and think of it as a life-saving friend. Noah has now named the naughty stoma, that should not be there (the distal redundant bit of bowel that prolapsed) "Oswald" as this is the baddie in the epic mickey game. So we keep looking to see if Oswald has appeared (which is often) and then make Noah lie down so he disappears again.
I can see this is going to make school very difficult as now not only to we have to teach the staff how to empty and change bags but also when to be concerned and phone us or the hospital.
We are going to say we don't want Noah to do PE or swimming and tell the staff to have a very high index of suspicion and send him home if they have any concerns. This is not going to fit well with me going to Massey but luckily there are 4 weeks till my term starts so hopefully by then we'll have an idea of what's happening and I can decide whether or not I need to withdraw from my papers.
Noah is doing pretty well - I caught him carrying a chair upstairs - but other than that he is trying to be quiet. He is a little subdued - he used to often tell us he hated us but when we were in hospital said to me "I hate you and I love you mum" and when Paul came to get us in the afternoon he held hands with us both and said "I love my parents" He seems especially cute at the moment.

Noah surgery for prolapse

2012-01-27T15:44:00.002+13:00

The stoma nurse put on a new kind of bag yesterday, much stickier and brown rather than transparent, unfortunately this meant that we didn't see how much Noah's stoma was prolapsing. It was also the day of resuming 'date nigth' for Paul and I so Hannah babaysat while Paul and I went out for a meal and to the movies and got back at 11pm to find Noah still awake, although not in pain.
He said he had emptied his bag three times durign the evening and it was red but it was not until I emptied it at midnight that I realised this was frank blood We decided we would have to take off the super sticky bag to have a look and when we did about 10cm of bowel was in the bag alongside his stoma and was a rather purple colour rather than the bright red it should be.
(I have a rather horrible photo of it from Pauls iphone)
We went to ED and then had about an hour to wait before being seen by the ED doctor ( frustrating because once bowel looses its blood supply its a real emergency) then the surgical registrar (luckily the one who had looked after Noah in December). He covered the prolapse with sugar and ice which made it look a little less purple but he could still not reduce it so woke up the consultant at 3am who came in to see. This then also meant waking up an anaesthetist. They hoped that anaesthesia would relax his abdominal muscles enough for the prolapse to be able to be reduced but if not we had to be prepared for major surgery with bowel resection, so Paul and I sat in the relatives waiting room for what seemed like ages until the surgeon returned and said with more sugar (this dehydrates the bowel wall making it smaller) and patience he had managed to get it back in.
Unfortunately it is almost inevitable it will prolapse again so Paul and I have to keep a close watch and try to reduce any prolapse at home if we can and if not may directly phone the registrars.
The only solution is to repair the ileostomy and this can only be done once the pediatric surgeons have decided what was causing the chronically dilated bowel (found at Decembers surgery)and sorted that. (Roll on surgeon's return from Holidays on Feb 7th) Still it means we can take the next few weeks as a 'hospital in the home' type time and not feel guilty if we are worried about Noah.
A whole night without sleep - a very long while since we did that! got to ED at 1.20 am to the recovery room at 6.30am and then Paul came home to crash while I accompanied Noah to the ward at 8am and got a few hours very disturbed sleep around ward rounds and visits from the stoma nurse etc. We are very grateful for those staff who helped us in the middle of the night and pleased that Noah has bounced back and was able to be discharged home at 3pm to wish Hannah a happy birthday - we are proud of Hannah who was supposed to be spending the day with us all in Greytown but instead drove back here at 1am to babysit until this afternoon.
so Happy 5th wedding anniversary Sam and Anika and Happy Birthday Hannah, Noah has now given you another reason to remember the date!

I love the washing machine

2012-01-24T10:45:00.008+13:00

photos from our New Plymouth trip and Charline and Scott's wedding where Hannah was

maid of honour

We managed our trip to New Plymouth but decided we are not brave enough to try out any other motels during this week of Paul's holiday. Noah slept sandwiched between two brolly sheets and the first night didn't leak at all (Paul changed his bag just before bed and we told him he had to sleep on his back) the second night the room stank but there looked to be just a small amount of leakage on the hotel sheets and we could put the brolly sheets in a plastic bag to wash at home.

On the journey home we stopped at a great museum place in Hawera (which presented a rather refreshing and different story of Maori history than I'd covered in my uni course) which included a boat ride rather likes the pirates of the Caribbean ride at Disneyland but without the queues, then we ate at the lovely gelato cafe in Hawera. However when we got to Wanganui Noah said "My bag's leaking" and indeed it was - it had almost fallen off - so Paul got to do something I had dreaded and changed Noah's bag in the disability toilet of Wanganui park. Noah luckily was very cooperative and just lay on the floor with his t-shirt as a pillow, however we didn't expect the bag to last long as it had not been put on with the usual care. So it was changed that night (3rd change of the day) for a small kids bag to give his rather sore skin at the edges a change to heal. At 3am Noah came in to say that bag was leaking and Paul changed the bag while I did the laundry - an absolute blow out that we would not have been able to cope with in a motel so thank goodness we were home. I love the washing machine and last night when the same thing happened I was all set up to do a total change of bedding and put the machine on in the middle of the night. We think now that he has a bit of a hernia of his stoma so it is bigger at night and then when he is asleep it reduces a little making the bag leak around the hole that the stoma now no longer neatly fits. We really wish we had a hospital appt before the end of February, it is difficult with his paediatrician leaving, the paediatric surgeon in Wellington being on holiday till Feb 6th and the adult surgeon having no real experience of kids ileostomies. I have looked up loads of websites and on the one from Great Ormond Street it says "Your child will need to be weighed and have their urinary sodium levels checked each week"- not much chance of that here.

I do not like living with such uncertainty, we have no idea what surgery lies ahead for Noah, but then I compare myself with others I know. especially my friend Bridget whose little boy Peter has relapsed leukaemia - she has lived with far worse uncertainty for years and coped with central lines, chemotherapy, anaesthetics, vomiting and diarrhoea nearly non-stop.

This makes it sound like life is only ileostomy though and its not - we went to the wedding of Hannah's friend Charline on Saturday - Hannah was a beautiful bridesmaid and Noah wore tight fitting trousers for the first time since his surgery. Paul and I had our first time out, going to the reception dance while Sarah (Noah's buddy) babysat.
We are spending this week while Paul is on holiday to try to finish the house (we have only been in it nearly 3 years now!) Noah has decided he would like his room decorated with a map theme so he has borrowed the beautiful globe that Beth gave Paul for Xmas and I have ordered some map posters from trade me and we have ordered some stickers for his wall one of which is a quote from one of his favourite doctor Seuss books and was the quote to Beth and James that Paul used to finish his wedding speech. It is very apt for our time ahead

"You're off to great places
Today is your day!

Your mountain is waiting.

So get on your way!"

out to play

2012-01-16T11:47:00.002+13:00

Noah has made a full recovery from his vomiting bug and yesterday Noah went to play with his friend Harley after church- the first time he has been without either Paul or I since his surgery. It was so kind of Bev to invite him and as she is an experienced midwife she wasn't too concerned about dealing with his ileostomy.
Noah was so pleased and had a great time and although he needed a bag change first thing in the morning and another in the evening he was alright during his time at Harley's house.
We still need many bag changes and can never work out why certain bags stick for longer than others but each full day we go without a change gives me a chance to catch up with the laundry and I have another order for brolly sheets on its way so life should soon be easier. We use a brolly sheet as part of our bag changing kit for Noah to lie on and protect our bed and then at night we sleep him in a brolly sheet sandwich one on top and one below him (sometimes this even works and protects the duvet and under sheet!). i should probably write and thank the brolly sheet manufacturers!
Lets hope the run of easier management continues as this week Paul and I are going out twice - for a meal at a friends on Tuesday and to a wedding reception Saturday, and we are also accompanying Paul to his New Plymouth clinic on Wednesday and Thursday so will get some experience of managing the ileostomy away from home.

Noah headache vomiting

2012-01-13T09:40:00.003+13:00

Life was on a fairly even keel, the novelty of school holidays and bag changes having worn off, so today Noah is adding some excitement by complaining of headache, he vomited at 4am and now won't eat and has just had sips of chocolate milkshake, I am not sure how much his ileostomy is draining either. So now he's lying in bed, won't take panadol and I have sent Hannah to buy some bubblegum flavour paedialyte in the hopes we can turn him around before we need to go to hospital. It is this decision making process of whether or not to involve someone else that I always find so hard. Paul is on his way to a clinic in Hawera - luckily a one day clinic only.
LATER
We ended up in the emergency department as Noah vomited again but once there he picked up a bit, drank two cups of water and had an xray which showed lots of air in the stomach but no dilated bowel, so we've been allowed home if we encourage drinking. He managed to vomit again just as Hannah pulled th e car up into the driveway but he seems happy now whereas I am absolutely exhausted and have a major pile of sheets to wash!

cool boy is alive

2012-01-08T14:12:00.002+13:00

Noah must be much better, first he has become naughty again - running off and refusing to obey us in church today, and second he told us that cool boy Noah is alive - when he was post-op in hospital he said that 'cool boy Noah' was dead and he thought he would always be 'sick boy Noah'. This is real progress. We have also now had a total of 3 days when we have not needed to change his bag and this has allowed his skin to improve somewhat, this does mean that for the other 18 days he's been home he has had one or more bag changes whereas the bag should last for 3 days, but still we're pleased.
Noah has started taking more part in the care of his ileostomy, the other morning I said "We'd better empty your bag" and he said "I already have" - it had all gone down the toilet too! Today he pulled a little of the seal off himself, when Paul was changing the bag because of leaks.
It was good to go back to church today as it seemed like usual routine might be creeping back in and one day the ileostomy won't be my sole interest!

Noah loved Tintin

2012-01-04T11:31:00.002+13:00

Noah really enjoyed the Tintin movie and there were no problems with his ileostomy bag (we had added a strip of hypafix to the side which may have done the trick). Paul said it was wonderful to hear Noah laughing out loud at some of the slapstick comedy.
Noah tells me his favourite part was "killing cranes" but I can not find any pictures of this.

I have two more papers to do at Massey next semester which is really half-time, so I'm hoping they will fit with what ever surgery or appointments Noah needs. In fact I'm thinking I should brush up on my medical school type learning in case I go back to work. I am even considering working for USMLE step (the American boards first exam) as my medical degree is 32 years old I may need to do this before being allowed to work in NZ. I am starting with embryology as this is very relevant to Hirschsprungs disease and realise I have forgotten everything I ever knew about the GI tract and its formation!

first blockage

2012-01-03T14:45:00.002+13:00

We'd just decided that as today is a holiday in NZ, Paul and I would go for an early morning walk leaving Hannah to babysit, when we discovered that not only had Noah's small bag leaked all over his bedding BUT he was complaining of pain and some rigidity in his tummy - he describes this as "I have had a stroke" remembering that grandad doesn't move much now he's had a stroke. Every time we start to relax it seems something new happens.
Nothing was coming out his stoma and the stuff in the bag was very thick, so he obviously had a blockage/obstruction of some kind -perhaps due to the vast amount of poorly chewed pizza he consumed last night. The stoma itself had almost disappeared, retracted right back to skin level.
Paul as usual was calmer than me so we removed the bag and popped Noah in the bath to relax him, rather than going to the hospital.
I looked up what to do on-line and it said to get in a bath, have a warm drink and gently massage around the stoma, then if it doesn't clear you can irrigate the stoma (I guess this would be similar to the rectal irrigations we had to do when Noah was little, but still I don't fancy sticking a catheter up the stoma).
Luckily after a while in the bath and bending his knee to his chest a few times it started producing again and the stoma came back out again. Once he had a new bag on we put on some music for Noah to dance and stuff started pouring out so the crisis was over - we didn't get our morning walk though.
Since then he has needed two further bag changes and we have now tried the paste that can go round the hole in the bag, but this just stung Noah for a long time and didn't improve wearing time, so we won;t do that again.
This afternoon Paul is being brave and taking Noah to watch TinTin at the cinema with Hannah and Sam while I babysit Isaac. I have packed him an ileostomy change back along with a spare t-shirt for Noah and at least they will be sitting in the dark if there is another leak!

leakage at McDonalds

2012-01-02T16:47:00.002+13:00

We woke this morning to a leaking bag of Noah's - it's a good way to get us out of bed when he comes close!
As it had been on for nearly 48hours we didn't worry too much but gave him a bath. We had none of the convex bags left just a collection of big and childrens bags (until supplies open again after the holidays) so used one of the big bags. About two hours later Noah told us it was leaking - he was right and that meant the second change of clothes for the day along with all his sheets (its a bit like laundry for a newborn all over again). With another big bag on we went out for his choice of first time eating out to McDonalds. After his food he wanted to play on the playground, Paul checked his bag first and it was leaking again. Noah was determined to still play which was obviously impossible, so although we felt very sorry for him as havign the ileosotomy is impacting his life so much, he had to be dragged out of McDonalds in the end by Paul and I displaying his bag and stoma to all as he struggled making his t-shirt lift up. We came home (as we certainly do not yet have the confidence for a bag change in McDonalds) and Paul put on a children's bag for another try while I did another load of washing.
We are looking forward to the day when we find the right bags so that we can do as the stoma nurse has suggested and change them every 3 to 4 days, so far we have not lasted to a planned bag change at all!
Noah's output was very liquid today and had reached 350ml by lunch time - this is supposed to be our 'take action' point, but he seems well so we've just given him a loperamide tablet and some extra drink for now.

Quiet New Year

2012-01-01T15:06:00.002+13:00

The older kids went to a party so it was just Paul and I and the trisomy tribe at home. We almost forgot it was New Year's Eve and just had a quiet evening eating Paul's home made pizza, watching some of our UK DVDs from amazon - Rev and Downton Abby and were in bed before midnight!
We have used the ileostomy bags marked "in case of severe leakage" and Noah went 48hours without leaking! These are convex bags and can have a belt attached so I think we will see if we can get a bigger supply and a belt once the holidays are over.
We dared to take Noah out to the shops to buy a new pair of sandals and then got an ice-cream. I had enough supplies with us to be able to change his bag in a public toilet (how terrible that would be) and of course that meant everything was fine.
We may dare to take him to the cinema or McDonalds on Monday.
Today we are having a celebration birthday meal for Beth as she returns to Oz tomorrow and her birthday is Jan 4th so I'd better go to the supermarket and buy some food! Beth is kindly babysitting while Paul and I do this.

leaving the house

2011-12-29T10:14:00.002+13:00

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

Christmas celebrations

2011-12-26T18:09:00.003+13:00

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

2011-12-26T18:04:00.002+13:00

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!

Managing Noah's ileostomy - day 1

2011-12-24T08:36:00.002+13:00

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!

Apologies and our (outdated) Christmas letter

2011-12-23T19:29:00.001+13:00

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.

home -after 10 days

2011-12-22T14:17:00.002+13:00

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".

Doctor Noah

2011-12-20T21:51:00.003+13:00

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.

real clothes

2011-12-19T17:58:00.002+13:00

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.

Riding and walking

2011-12-18T22:51:00.006+13:00

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.

Noah's air bag

2011-12-17T16:55:00.003+13:00

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"!

Good progress

2011-12-16T17:02:00.006+13:00

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.

Some tubes out

2011-12-16T11:37:00.002+13:00

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.

Noah in hospital photos

2011-12-14T20:46:00.002+13:00

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

2011-12-14T19:03:00.002+13:00

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.

Lily's premiere

2011-12-01T11:36:00.004+13:00

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

2011-11-27T16:43:00.004+13:00

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

2011-11-24T14:51:00.002+13:00

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

2011-11-19T12:52:00.003+13:00

some photos of the recent trip

the measles that wasn't

2011-09-02T09:00:00.002+12:00

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

2011-07-25T15:07:00.002+12:00

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

2011-07-11T11:59:00.002+12:00

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"

girls weekend

2011-06-07T15:58:00.003+12:00

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.

Wedding videos

2011-05-14T14:58:00.004+12:00

Before the wedding

The wedding service

After the wedding

Enjoying school holidays

2011-04-25T13:05:00.005+12:00

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!

more wedding photos

2011-04-19T14:54:00.000+12:00

wedding photos at last!

2011-04-19T14:27:00.004+12:00

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.

Lily thought she'd missed the wedding

2011-04-15T09:22:00.008+12:00

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!

wedding countdown begins

2011-04-09T19:39:00.003+12:00

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!!

Happy World Down syndrome day

2011-03-21T22:09:00.003+13:00

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.

Marshmallow woman

2011-03-08T17:26:00.002+13:00

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!

Earthquake and starting Massey

2011-03-01T16:32:00.002+13:00

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.

Noah and maps

2011-02-21T16:10:00.002+13:00

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.

Noah at school

2011-02-17T10:07:00.003+13:00

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!

cure for self pity

2011-02-08T17:35:00.003+13:00

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.

back to routine

2011-02-06T13:16:00.002+13:00

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).

off we go

2011-01-16T16:36:00.002+13:00

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!

Christmas Eve

2010-12-24T15:51:00.003+13:00

We're (Paul, I and the two boys) just back from two nights in New Plymouth where Paul had an away clinic. We saw the lovely Christmas lights at the park there and bought a lovely wooden children's crib scene that we'll add to our Christmas collection.
Not totally the relaxing time we'd planned as Lily decided on the first evening by herself (just two hours before Hannah was due back home from her job in a local shop) that she was frightened to be alone (this has never been the case before - usually she is only too pleased to be rid of us) and invited another teenager with Down syndrome round! We got a text from Hannah saying the two girls were now getting themselves food at 9pm alone in the house and planning to watch videos all night Lily can be pretty sensible alone but sometimes gets silly and having someone just as silly with her sounded like a recipe for disaster. It ended up OK with Lily spending two nights at her friends house but was not what we wanted to have to sort out by phone from afar.
Lots of family members are travelling this Christmas Eve - we've just done the three hour drive from New Plymouth, Sam and Anika should be about half way on their eight hour drive here from Auckland and Beth and James should be on the train from Sydney to Kiama to spend Christmas with my brother and his family.
We're hoping to get to Children's outdoor service with a stable and real animals (Isaac will love it) but the weather is a bit rough at present. I'll finish with this years Christmas letter and Christmas photos of the boys. (It was written a few weeks ago so is out of sequence with the events of the blog)

It seems to be true that time races by once you get older and I really can’t believe that it’s already time to write the Christmas letter and get out the decorations. We are decorating the house a little early this year as Beth won’t be here for Christmas but will be visiting next weekend when we will have a combined Thanksgiving/Christmas lunch.
I have just ordered two enormous (four feet wide) Christmas wreaths with lights (I got them from my favorite on-line auction site, left over from shop decorations) we plan to hang them from the balconies to go with our light up star. It won’t cost too much in electricity as it doesn’t get dark till nearly 9pm and people go to bed early in NZ so we can turn the lights off by 10.30!
We’ve had several celebrations this year with Beth and Rachel getting engaged and the little boys, Paul and I having a Disneyland holiday then going onto UK for my mum’s 80th birthday. A little less turmoil than last year too, being settled into our new home and Isaac needing only one fairly minor operation.
A quick update on highlights for everyone is
Joe – still in South Korea teaching English, but in a different school. He has worked hard on computer programming for Paul’s internet anticoagulation business INRonline
Sam and Anika –in Auckland Sam has continued running (once his tibial stress fracture healed) and completed his first marathon (which included running across the Auckland bridge, then needing time off work as he couldn’t walk) he works for Bluebird foods inventing new muesli bars. Anika got a job doing psychological profiles for the personnel departments of various companies. She seems to be enjoying it and it means she’ll get more time off for Christmas than she did while working in a shop last year.
Beth and James – in Sydney. They got engaged in Palmerston North’s rose gardens last Christmas day. James had asked our permission the day before, so we had to try to keep it secret and only Hannah guessed. They came home to place-cards for Christmas lunch saying “Bride –to-be” and “Groom-to-be” The wedding is on April 16th 2011 with a wedding blessing in UK on October 29th (close to my dad’s 80th birthday)
James was accepted to do a masters degree (possibly changing to PhD) in ancient history at Macquarie university in New South Wales. They moved to Australia in March and luckily Beth found a job in a prestigious law firm. They will be spending Christmas with my brother Jon and his family by the beach.
Rachel and Adam – in Auckland. They have just got engaged on their fifth anniversary on being together. They may have the wedding on a tropical Island so that will be exciting.
Lily continues paid work in a department store ten hours a week and has a very busy social life. She loved the ball that our local Down syndrome association held and is very excited that a new Harry Potter film has come out
Hannah – lives in Palmerston North - first with us then flatting now with us again. Hannah continues her social work course, has bought herself a car and has a boyfriend Thomas who luckily likes small children
Noah is just finishing at primary school and is looking forward to wearing uniform at High School next year. He is growing fast and is now the same height as Lily. He continues to be unable to resist the urge to investigate and pull things to pieces and we alternate between being very crossed about what he’s broken and beign amused by his unusual way of looking at things
Isaac has big changes ahead too as he is now 5 and will start school next year. He has finally put on a little weight (still 12.6kg is pretty light for a 5 year old) and health wise has done well throughout the year. His only operation was to improve his squint and put in grommets. He will probably wear hearing aides next year.
Foster children – we had respite care weekends for J who we used to foster and for two little boys, we had two toddler brothers (aged two and a half and three and a half) who stayed for three weeks and brought us to our knees, then for three and a half months we had the beautiful Heidi (who graces our Christmas card) who changed from a terrified, frozen 15 month old to a cute and active 18 month old.
Paul – his year has been busy as ever with his job and away clinics and running INRonline. In May he went to the states as part of a competition run by NZ trade and enterprise and now a pilot scheme is about to start in NZ with 15 pharmacies managing anticoagulant control using Paul and Joe’s website.
Angela – having all the little children around has made me realize I’m not as young as I used to be! So we may be less likely to take in foster children but instead once Isaac starts school, I too will start school, doing some psychology papers at Massey our local university. Beth and Hannah both find this very funny and think I will be the mature student at the back of the class who keeps putting her hand up and interrupting lectures.

It seems that next year will not be boring either with
Hannah’s 21st and a Disneyland holiday in January
Beth’s wedding in April and
Beth’s second wedding (to the same man! – otherwise known as a wedding blessing) in October in the UK

Hope you all have a lovely peaceful Christmas and bright New Year

Christmas dance show

2010-12-21T10:46:00.004+13:00

We had a great Down syndrome Christmas party at our house with about 70 people here (lots of different families to last year though) The Jorjaz dance group performed two numbers and tonight is their big show in front of an audience of 180.

The local free paper featured them (Lily on the right with the photo caption - Blissing out: Lily Harper is a natural performer) and there was also this typical Lily quote in the text

"Lily Harper who works at Farmers, has been with the group since its early days. She said Mr Martin, who took over from Georgia, is an awesome teacher.

"Everybody likes him, he's funny, plus he's really awesome at acting as well."

Acting is Miss Harper's other love and her current muse is High Laurie as Dr Gregory House.

Unlike Miss Harper, her boyfriend Elliot Cole is not a natural performer.

Miss Harper said she is the better dancer, but "he is my boyfriend so I have to encourage him."

Christmas season arrives

2010-12-11T17:17:00.002+13:00

Suddenly it's getting busy for Christmas with three events in three days.
Yesterday we went to the lab BBQ, tonight we have a special Christmas meal and party with our homegroup and tomorrow is the annual Down syndrome party here.
Last year we had 70 attend and hoping to beat it this year.
We have to take something different and Christmassy to the party tonight so we thought we'd play this wonderful Messiah clip from youtube. It brings tears to my eyes every time I see it and I notice it's at 17 million hits now!

kiwi Thanksgiving

2010-11-29T12:58:00.002+13:00

We've just followed our new tradition of giving thanks for the children's birthparents on thanksgiving, and we also remembered the families of all the children we've fostered this year.
We were able to have a bigger do than usual as Beth and James are here from Sydney (this is instead of at Christmas) and some of James family came too.
We had twelve for lunch plus Isaac and 8 week old baby Malachi (James's nephew) and had turkey, ham and all the trimmings - including sweet potato and marshmallows (I used kumera which I think is the same as sweet potato - but perhaps I should have used orange kumera rather than white, and white marshmallows rather than pink which bled pink dye into it!)
James's mum Brenda had made pies for dessert, making a pumpkin pie with her American friend. The friend said that pumpkin pie is usually made by putting a tin of pumpkin pie filling into a ready made pastry case, but they weren't available in NZ so the pie had to be made from scratch.
It was a lovely time, all being together and encouraged us to clean the house too!

Happier times

2010-11-21T10:55:00.003+13:00

Rachel sent these lovely photos of her engagement party.

Sorry not to have blogged for so long following such a negative post!

Things have become much more manageable here now. Isaac is going to kindy every morning now in preparation for school next year and with Heidi gone this means I get a little time for myself some mornings!

My plan is to try studying again by doing some psychology papers next year at Massey (our local university) and I'm meant to be reading about psychology during these quiet times but actually I found myself addicted to the old TV series "West Wing" (I don't know how we missed it when it was on TV - it is probably even better than Boston Legal - so high praise from me indeed). I have now finished watching 7 seasons of 22 episodes each (I don't want to work out how much time that is!!) so can return to blogging and the general upkeep of the house (Joke!) and preparations for Christmas.

Beth and James are visiting next weekend when we hope to have a Thanksgiving/Christmas lunch with James' family.

What a week!

2010-11-08T12:27:00.002+13:00

Packed week really - daughter Rachel got engaged, foster daughter moved on, my optician appointment said I might have early glaucoma, Lily's that she needs a cataract operation, Paul went for a busy few days and got food poisoning so badly he had to cancel his clinic and lie on his own examination couch all day, then give a very important lecture (with 30 people flying in from all over NZ) sitting down having eaten nothing for 24 hours.
We had a good relaxing weekend though, but this morning has started with 3 emails from trade me saying I (or could it possibly be the boy who played on the computer yesterday?) have pressed 'buy now' for three dvds and blue rays of Noah's favourite movie "How to train your dragon" (we don't even have blue-ray!). Lucky I have such a good sense of humour!!!

Goodbye Heidi

2010-11-02T15:48:00.002+13:00

Heidi's goodbye went as planned. She spent all day yesterday with her new caregiver and this actually worked out well for me as Noah had an eye appointment at the hospital which I was able to take him too without any little children - just as well as they ran an hour late - we were there from 10.30 till 12.30 - he had drops put in to dilate his pupils and while we waited 30 minutes for them to work Paul came down and had coffee with us . Noah doesn't need glasses yet, but will be reviewed in four months.

When Heidi returned around 5 pm she was exhausted and grouchy and even vomited a small amount twice (behaviour we haven;t seen since she first came to us) we went through the usual bath routine which calmed her a little and put her favourite mainly music dancing songs on for her to dance to. She was really hungry downing two bottles and then falling deeply asleep by 6.30. I guess she was quite disturbed by the change in routine and people and hadn't been able to eat or sleep much.

This morning we dressed her in the new dress I'd bought her while we were in Sydney and all took her to the holiday park where her caregiver was staying. I managed not to cry until then but it was sad letting her go knowing what she'd been through before she came to us and hoping she'll be safe now.

This evening we're all going to go out to Pompeii Pizza together to celebrate being our usual smaller family again - I'm trying to make this a family ritual for the day foster children leave. The plan is for it to be positive but Hannah says "When people die you don't celebrate being a new smaller family" I argue that fostering is a bit different to bereavement - this loss marks the completion of our role so is a cause for celebration.

Rachel is engaged

2010-11-01T13:11:00.003+13:00

Rachel and Adam two years ago on her 21st birthday

Another celebration in the family as Rachel phoned this weekend to say that on Thursday - their fifth anniversary of being together - her boyfriend Adam proposed to her.

The proposal sounds so romantic and to make it even more special when Sky City hotel (where they were planning a celebration weekend) heard, they were upgraded to a suite for free, with rose petals over the floor!

It was lovely to hear Rachel so excited and happy on the phone and she was able to give the good news to my dad in the UK on his 79th birthday as a special birthday present.

Rachel is now 23 and came to us when she was four and a half was adopted when she was eight and lived with us until she was 16. She had a very tough start to life with us being the seventh primary caregivers she'd had by age four and a half. I was told by one social worker that Rachel's family history was the worst the social worker had ever dealt with. Understandably Rachel was very reluctant to trust us (we had never heard of attachment disorder in 1992 as naive foster parents but Rachel was described to us as an unbonded child) and we had plenty of upset and difficult behaviour over the years.

I can remember first hearing of Adam five years ago when Rachel was in the middle of some really difficult circumstances and unable to hold down a job. He helped her out and has been a real stabilising influence on her since, quietly showing her how he patiently stayed with his job even when he didn't enjoy it, had a licence to drive his car and so on.

They now own a house together which they spend a lot of time decorating and Rachel has been in the same job for over two years.

I feel as though we were able to just about hold Rachel together for the eleven and a half years she lived with us, but now with Adam's help she has learnt to be part of a loving relationship and blossomed into the adult woman she deserves to be.

Congratulations Rachel and Adam!

Christmas card out takes

2010-10-25T13:19:00.004+13:00

We have heard that Heidi will soon be leaving - possibly in just a few days (we have heard this before without it happening though) so we decided to take a few photos before she goes and thought as she looks so cute we'll include her in this year's Christmas card.

I bought some cute little Christmas outfits from trade me - Isaac's has a reindeer on and Heidi's has a holly decoration, so they wore those and Noah wore a red tie and we took 81 photos none of which were fantastic. Some were worse than others though! Thought you might like these out takes!

feeding therapy philosophy

2010-10-14T12:14:00.002+13:00

Another day of clinic visits yesterday for Isaac. It started with a hearing assessment for Isaac at 8.30am I realised this meant I wouldn't be able to get Noah to school and also that having Heidi present during the hearing assessment might no be a good idea - luckily Paul was here and able to get to work a little later bringing Heidi in with him.
The best bit was that I could say to Paul "I have to leave now, I have a meeting" which he often says to me leaving me with lots of children to organise.
I got to the hospital and Isaac had his assessment while Paul dealt with the children at home suddenly realising he didn't quite know how the morning routine went, the only minor issues were -
Lily nearly missing her bus as Paul didn't realise she had a watch that had stopped until she said "Is it 11.17 dad? When will it be 8.05?" at which point he realised it was 8.10 so she'd have to run

Heidi not having her hair done, (very fine black Maori hair that tangles everywhere) because Paul didn't realise I do her hair each morning

Noah taking his beautiful leather Armani coat (which I got from trade me) to school because dad just said "Get your coat" not "Get the old multicoloured jacket (that nobody is likely to want to steal)"

Anyway Isaac failed his hearing assessment as usual, his grommet has fallen out on one side and seems to be blocked on the other (although his ear does discharge on this side so it can't be totally blocked) and they suggested he gets hearing aides. One advantage of having more than one child with a disability is that we've been through this before with Lily, another is that as Isaac is under 18 unlike Lily he will get faster service and his hearing aides will be FREE!!

At 9.30 we had a meeting about the feeding clinic 'Kai time" it had said children weren't expected to attend but as Isaac was already at the hospital and as Heidi hasn't yet moved on as expected, I had to attend with two disruptive children. Heidi showed me she is now a typical 18month old (or maybe even a hyperactive 18 month old) when within the first ten minutes she had managed to climb into the therapists chair, find the breakable coffee cups, draw with pen on the walls, distribute all my handouts all over the floor and have a fight with Isaac.

We were asked to write down our goals for feeding clinic and then the therapist said we usually find most people have written "I want my child to eat fruit and veg."
This was the first inkling I had that our problems might be more extreme - my goals were "I'd like him to be able to take multiple swallows so he can learn to drink" and "I'd like him to be able to maintain or even gain weight" -Weighing 12kg at age 5 is way off the charts for typical children although it's still just on the 5th centile for children with DS

Then we were told "It's OK for your child to eat breakfast cereal in the evening" Well thank goodness for that as its the mainstay of Isaac's diet. The four mothers had to introduce ourselves and suddenly the difference in feeding issues became very obvious, the other children were 'picky eaters' not underweight, not unable to eat, never tube fed, not disabled, no history of muliple surgeries etc etc.

We were then told that Eating is essentially a learned motor behaviour and that 4-6% of the paediatric population with feeding problems will starve themselves.

This set off alarm bells as it is very based on the behavioural philosophy of feeding therapies rather than the self- motivation/regulation philosophy of Graz that I am trying so hard to believe in.

I am realising more and more that I am at the psychotherapy type side of the spectrum rather than the behavioural psychology side in much of my child rearing so I hope I am going to be able to cope with this clinic.

I guess really as a mum I will use whichever philosophy has the best result but I no longer believe that eating can just be learnt as a motor behaviour - the child needs to experience hunger so that some self-motivation come sin.

the real trouble is that if you want to get your child to eat by letting them get hungry you need a lot of support - if your therapists don't hold this view they're not able to offer such support.

Isaac's birthday

2010-10-12T15:44:00.004+13:00

It's hard to believe our little boy is five!!
We know exactly what things he likes so bought him three books about animals. He had a lot of help opening them from Noah and Lily then Heidi wanted to play with the wrapping paper while Isaac read the book.
We also got a toy kitchen without being sure he would like it (I have a lot of toys in my house that are very popular with visiting children but never played with by my own children!) but actually it has four doors (rather like the aga in fact!) and Isaac loves opening and closing doors so it has been a hit. Heidi is also very pleased as it has a toy phone with it - it is so funny to hear this 18 month old little girl putting on a phone voice! (she has no words but great expression!)

Noah bought Isaac the Dr Seuss 'Happy Birthday' book from the Dr Seuss exhibition in Woodville but this is really for Noah. It was a lovely exhibition and the curator of the art gallery was impressed when he heard Noah naming lots of the pictures so came to talk to us. Noah is now convinced that he's met Dr Seuss!

We spent the day getting Heidi ready for an access visit for which mum didn't turn up - like the previous four, then this afternoon Isaac celebrated his birthday with a hospital appointment with the dietitian. Tonight Lily and her helper will make tea (I think it's pasta) and we have cake with five candles on for dessert.

school holidays

2010-09-29T10:37:00.002+13:00

As always school holidays aren't going quite as planned.
On Monday I took Heidi (and Noah and Isaac of course at its the holidays) to meet 'nana' - the family member who lives 8 hours away who will become her permanent caregiver. I took various toys with me in the hope of entertaining our boys so I would be free to discuss Heidi. There were two adults and two little girls (aged 2 and 5 who are cousins not sisters so I'm a bit confused who they belong to) there and we had a good introductory meeting with Heidi returning to my side occasionally.
I didn't realise that the plan was for her to go and spend the rest of the day with her relatives, but luckily had a bit of extra food and clothes packed (no spare nappies as both Isaac and Heidi had already needed changing by that point!) so off she went and that gave me a bit of unexpected time to spend with the boys in town. - Noah was very pleased when we bought some junior meccano for him (I just have to disregard the bit that says age 4 plus as he's 11) and had an early lunch at Mc Donalds.
Heidi was returned back about half past four very exhausted, (this is not the optimum type plan for introducing children to new caregivers) Isaac had hardly eaten all day and had several dirty nappies, so they both had a bath and quickly to bed.
Yesterday I had to take all three children to the hospital as Heidi had a check up appointment for children in care. We also wanted to get Isaac weighed - except by that time he had barely eaten for 3 days and I wasn't so keen on seeing how little he weighed, but he was up by 200g and has now just passed the magic 12kg mark once again. Hopefully when he's well he will return to the 12.2kg he weighed last Christmas.
Heidi weighed 10.35kg (she is 17 months old compared to Isaac's 60 months!) so she has gained 1.4kg in her eleven weeks with us (900g in the first 4 weeks). The social worker was there for the appointment and was amazed at the change in Heidi - she is just a typical toddler now.
It was good to have a chat to the social worker as I was expecting as the relatives obviously did that Heidi would be going back with them at the end of the week, but it seems the approval process hasn't all been completed so the plan was for Heidi to spend 4 hours with them today and then they'd drive the 8 hours home.
We have a student nanny for two days so I said to Noah that while Heidi was out, the nanny could have sole charge of Isaac and Noah and I could go to the movies.
But now everything has changed
in the middle of last night's home group Heidi was sitting on my lap as she was a bit unsettled when she did an amazingly big vomit - oh our family does liven up homegroup -she repeated this at 2am and then took an hour to settle.
This means that obviously there is some kind of bug that both Isaac and Heidi have (and please don;t let it go through the rest of the family!) I managed to contact the social workers and 'nana' has decided to forgo her visit with Heidi and instead drive 8 hours next week to see her.
So now we're stuck at home all day with sick children - just what I love for school holidays!
Still we have the nanny again tomorrow and I'm hoping Heidi will be well enough to leave then so the nanny says she'll look after both Isaac and Heidi so Noah and Lily (who has Thursday as her day off) can come with me to see Despicable me.

Sydney weekend

2010-09-23T09:30:00.002+12:00

We had such a great weekend in Sydney with Beth and James.

We chose to be flying in some of the worst weather NZ has experienced - on our first flight the pilot said "I have now taken this plane as high as it's allowed to fly, so you will just have to put up with a few bumps and if you're from Christchurch as I am you'll be used to bumps by now anyway!"
The wind was so strong and against us all the way to Sydney so we arrived almost an hour late. It was a fairly bumpy landing and the steward then said "The pilots are really earning their money today!"
Coming back though the wind was in our favour and the flight only took 2 1/2 hours rather than the usual 3 1/2. The final flight to Palmerston was the roughest landing we've ever had and the stewardess made us all applaud the pilot and then her as she'd still managed to serve us half cups of coffee!

Anyway the weather in Sydney was lovely a good few degrees higher than here. We got a family three day pass for the monorail and went round it innumerable times - Paul and Noah the most as they ended up doing a quiz about the monorail stops (On the last night this meant I took Lily and Noah back to the hotel while Paul continued a monorail journey to see if her could get the final clue!!)
We went to Beth's law office on Martin Place which was quite breathtaking, very plush- reminded us of 'Boston Legal" then we had tea in the food court underneath Myers - I could remember this from 15 years ago when we lived in Sydney for a while.
On Saturday we went to the fish market on the light rail (included in our monorail price) then went to Paddy's markets where I bought Beth a "Jimmy Choo" bag - the real Jimmy Choo shop is right near her office (along with prada, Gucci and the like) and the version I bought was a lot cheaper but with a worse quality zip!! - I cannot actually believe the market is legally allowed to sell rip-off merchandise, in Singapore markets they even hide some of the stuff away.
In the afternoon we went to the wildlife park at Darling Harbour where Beth informed me I was still able to embarrass her as I sang "Never smile at a crocodile" when I didn't even have Noah or Lily beside me!
We went to a lovely Darling Harbour restaurant called pancakes on the Rocks for tea,. Unfortunately we had to queue a long time for a table and we could see Lily wilting with tiredness in front of our eyes so we had to cut the visit short and miss out on the pancakes.

On Sunday we caught the train out to McQuarie university, where James studies and had breakfast at their fantastic local mall (which we again remembered from 15 years ago because there is an ice-rink there) then walked to their apartment. it was a lovely place and we got a quick glimpse of Beth's wedding dress which is beautiful.
We caught the bus back to Sydney centre and then went to Wicked which was fantastic - so many layers of meaning. James even thought it linked to his philosophy studies. It was about being different and how the way people are treated impacts on their choices, some of the words were fantastic - one song towards the end (click to hear it and read lyrics) seemed very applicable to families who have a child with DS, could be a new title song for our welcome pack!

"I've heard it said
That people come into our lives for a reason
Bringing something we must learn
And we are led
To those who help us most to grow
If we let them
And we help them in return
Well, I don't know if I believe that's true
But I know I'm who I am today
Because I knew you

Like a comet pulled from orbit
As it passes a sun
Like a stream that meets a boulder
Halfway through the wood
Who can say if I've been changed for the better?
But because I knew you
I have been changed for good"

Now back home I am rushed off my feet catching up with housework etc. Hannah has said she will not look after two pre-schoolers again unless we pay her a million dolllars!

Heidi has changed into a typical toddler-very demanding and touching everything and moving stuff from one place to another. She is very interested in phones and pretends all remote controls etc are phones. She gets into the garden (which is very muddy at the moment) if there is the slightest gap in the sliding doors. She's becoming very picky with food but will eat most things later from the floor!

She is about to meet the family member who is being approved as her carer so we will probably only have her for another week or two.

hectic days

2010-09-15T13:30:00.003+12:00

I got Isaac to kindy this morning to find all the other children dressed in pyjamas - I had managed to miss the notice about the kindy dress-up breakfast!
Life has become a bit hectic (when isn't it?)
Last Monday I got a letter saying pub charity had approved the application of the local Down syndrome association to attend the DS national forum which is held every 2 years. Unfortunately the forum started that Friday!! I had a hectic time ringing round everyone who might be interested offering them an all expenses paid trip to Auckland. Finally I went (leaving Paul at home alone on his birthday looking after 4 children!) with my friend who has adopted a little boy who is now aged 2.
I met up with my friends form Auckland and was able to introduce my two friends with adopted children to each other which was lovely.
I also got two nights undisturbed sleep (strange that luxury for me now is to get to bed by 10pm not chat till late) and got enthused again with some DS ideas.
The speaker from e reader pro (a special reading programme for children with DS) was there and inspired me to make some resources to teach Isaac to read, I bought a CD full of workbooks specially designed for Children with DS (precision academics) and now I'm mulling over whether Palmerston North could become a centre of excellence for Down syndrome in NZ and offer Down syndrome health clinics - Paul could fairly easily be persuaded to be the physician for these.

In a few days we're off to Sydney to see Beth and we just discovered that the season for 'Wicked' has been extended so we've bought tickets - all very exciting.

flooded river

2010-09-09T19:44:00.003+12:00

We live right by the river although apparently we are not in a flood zone and the council tell us that most of Hokowhitu and the central square of Palmerston would flood before us.

Anyway after torrential rain on Monday the river flooded its banks and at its highest covered the grass all the way to the stop banks.

At about 2.30pm on Monday afternoon it came over by the little fishing platform then you could see the water actually moving across the grass. I went to school for Noah's IEP which lasted just over an hour and came home to see the river completely flooded (this was much more exciting than the IEP which seemed to be exactly the same as his last one!)

lots of people parked along the road to take photos and tell us this was the highest the river had been since the floods of 2004 (when we'd been living in Auckland)

The water was really wild with whole trees being washed along.

During the night they opened the flood gates (they had to get all the farmers whose fields were about to flood to move their stock first) and over Tuesday morning the river went down as fast as it had risen.

The photo of Noah in his suit shows what the river is usually like compared to the flooding.

birthday photos

2010-09-05T16:20:00.002+12:00

I've finally sorted a few photos - Lily's birthday last week and Isaac and Heidi in the garden

I am still enjoying dressing Heidi like a little doll in all my second hand shops finds. I think it"s a Libety lawn smocked dress - and look at the cute socks and shoes

Today is Rachel's birthday and NZ father's day. We were woken by Paul's family to see if we were OK as the British news had been about the earthquake devastation in Christchurch. We hadn't heard of it till then and hadn't even felt the earthquake, but it is very bad, luckily no-one has been killed.

Lily's birthday

2010-08-31T15:42:00.002+12:00

Lily turned 22 on Sunday.
The only thing she really wanted was a whip (she is into Indiana Jones at the moment!).
I couldn't bring myself to give her one but instead got the Indiana Jones game for the Wii where she can use the controller like a whip.
She wasn't really very impressed at first but now she's played the game a few times she's getting to like it.
We went out to lunch at Aqaba (one of Palmy's nice restaurants) and luckily it was only as we were leaving (and also luckily for me it was Hannah carrying Heidi) that we found out that you don;t need to use as much lactulose for ordinary children who are constipated as you do for those with Down syndrome.
Like every mother I know of a child with Down syndrome I keep a big bottle of lactulose on hand, so when Heidi was constipated, before thinking of anything else I just added a slug of lactulose to her morning bottle.
I think the medical terminology would be that "it had good effect" and we ended up finding all the plastic bags in the car and changing her so that she travelled home wearing only a nappy and a cardigan!
We also discovered that Heidi has been picking up some of the sign language we use with Isaac. I was holding her in church and noticed her slapping her thigh (this is the NZ sign for dog) only then did I realise the vicar had just said something about "God"!

In the afternoon we went to an afternoon tea organised by the Down syndrome association, Paul stayed home and realised it was the first time he's been alone in this house!
Hannah babysat so that Paul and I could go to the 5 O'clock service where there was a singing group "Sons of Korah" who were excellent singing psalms - it also meant I now have a present to give Paul for fathers Day or his birthday as they were selling CDs.
We ended the birthday day by watching the original movie of Batman. This is such a spoof, but Lily and Noah enjoyed it absolutely seriously and now if we want Noah to do anything we just have to call him "Robin"!

maybe winters ending

2010-08-23T10:30:00.002+12:00

Its light by 7am now which makes a big difference to the ease of getting out of bed in the morning. It also means its still light when I give the little ones their bath in the evening.
We've even had a few days of playing outside (although mostly very muddy) and today I've got Isaac back to kindy as he is over his cough and cold.
Unfortunately he is hardly eating anything and at kindy this morning the teacher said it looked as though he'd lost weight.
We've decided not to start him at school for his 5th birthday after all as he is so fragile and the school teachers felt he was not ready.
Instead we are trying for an intensive care regime to try to up his weight and I am trying to steel myself for a play picnic each day (this is the main therapeutic time at Graz where children are allowed to explore food however they like) we have held 3 playpicnics now in Lily's bathroom with the bath ready run to pop Isaac into.
He will take a bit of various foods and will pick up a bottle and pretend to drink letting the fluid pour all down his front but he doesn;t eat big volumes,
Heidi joined in too yesterday and was delighted to be able to finger paint in custard!
She has been quite unwell over the weekend with a high temperature and cough. At one point Paul said to me "She's not really sick if she can make this much crying noise" He is mainly used to patients who need admission to intensive care for chest infections though so I said "Don't just think of her as a doctor but as her caregiver."
Anyway he kept me calm and he was right she recovered easily and is back to her usual self today.

weekend with Sam and Amika

2010-08-18T19:49:00.003+12:00

Sam and Anika came down from Auckland on Friday then back on Monday so that Sam could run the half marathon.
We watched him from our balcony and he cruised past almost effortlessly to our great applause - the route went past our house twice so we were able to cheer and embarrass lots of people! He finished in 1 hour 37 minutes so was very pleased with himself. We invited Isaac's support worker from kindy and her son to cheer with us as her husband was also running - he has run lots and lots of marathons and at the age of 54 still was a long way ahead of Sam.
Yesterday two of our church home groups had a combined session - a party to say goodbye to someone emigrating to the UK. I was asked if it would be easier for us to have the party here so we wouldn't need a babysitter and when I enthusiastically said "yes" I did believe it would be. However cooking a ham, roasting potatoes and looking after two pre-schoolers with colds who spread food over all the floor made me wonder how I could have been so silly. But in the end it was great, our house is lovely for entertaining and we dug out all the English things I could find to make a display - which included Noah's world cup pyjamas,a pot of marmite, some Ready Brek, a Noddy and Winnie the Pooh toy and some English currency!
Someone brought a Guinness (technically Irish rather than English I guess) cake made from Nigella Lawson's recipe which was fantastic and there was plenty of food left over for our tea tonight!
Today Heidi was really hot with a nasty cough so her social worker cancelled her access visit, Isaac was still a bit unwell and hardly ate anything and it poured with rain most of the day. I got to school this afternoon to find that Noah had been sent to time out twice today for punching someone and for disrupting his music group and then at four o'clock this afternoon Heidi made it an even more miserable day by vomiting a load of milk (more like cottage cheese) all over me. I decided Paul ought to be informed of all this at work and he managed to get back home soon after five and help out!!

a good night's sleep

2010-08-10T16:27:00.003+12:00

One of the benefits of parenting two pre-schoolers at my age is that I'm always ready for a good night's sleep! Like my years as a junior doctor I realise that sleep is the ultimate luxury, coming soon after breathing eating and drinking. I love to be able to go to bed soon after nine and don't do well at all if I'm up after eleven. Last night (Monday is our date night when Hannah baby sits) Paul wanted to go to a movie that finished after eleven but instead I made him change to a shorter one so we could be home soon after ten - we saw Killers and it was so funny I laughed out loud in the cinema (this is very unusual for me) They were advertised a new film which at first I honestly thought was called "Eat, sleep, love" - it's actually eat, pray, love.

Paul was away in Australia for three days last week so the need for sleep became even more intense as I had to manage mornings alone - I tend to have a shower think -"Oh I feel just lovely and I'm all ready" - then remember "now there's three more to dress!" (Noah does dress himself but if I don't get the clothes out and tell him which order they go on then he ends up in very odd assortments!

At home group last Tuesday I had been coughing my way through he evening. At the end everyone said "We won't stay for coffee, you sound like you need a good night's sleep" and I fell into bed by ten and slept without interruption for eight and a half hours. A week later and I still remember it fondly - most nights we are woken at about midnight by Isaac falling out of bed (we are trying him in the tiny bed that Paul made from a cot)

then we're woken at about one by Heidi crying (she will only settle for me but is gradually taking less time to settle) often around 3 or 4 by Noah sneaking downstairs to watch TV and soon after five by Isaac waking up and needing to come into our bed when we can all hopefully doze for another hour or so.

We turn the radio on soon after 6.30 and at 7am they have a bird call followed by the pips and some music. Isaac and Heidi love to bounce along to the music to start the day, then Paul makes our morning drinks and a bottle for Heidi and we start the school preparation rush.

Isaac has now started morning kindy and yesterday we had a meeting about starting school - they've decided he doesn't need a story writing book! He will do four mornings a week to start and for one term Noah and he will be at the same school. Then after Christmas Noah will move to the secondary school that Lily went to which we can see from the back garden. They have kindly agreed to take him on a year early and his primary school is keeping him one year extra at the moment so he can avoid the NZ custom of spending two years in an intermediate school.

The weather is finally brightening up and the children get to play occasionally in the garden and get very muddy.

We've just returned from a long hospital visit (3 different appointments for Isaac, getting weighed in paediatric clinic, audiology and dietitian) Heidi has managed to gain 900g in 4 weeks with us, but Isaac unfortunately has lost 150g so he's now 1.8kg less than his highest weight. He also has a moderate hearing loss and it seems his grommets are no longer working so may have fallen out. Combining this with the usual down time I feel after school meetings when I realise how behind other kids Isaac is, and I guess things aren't looking good for Isaac. He doesn't seem to mind though and once again I realise all I have to do is follow my children's' example and I'd deal with life much more easily!

Isaac's count down

2010-08-04T19:35:00.002+12:00

Isaac's ORRS application is now in with everyone pretty sure he should get ORRS. As is policy for the application it doesn't mention he has Down syndrome except where they managed to slip in "His brother Noah has Down syndrome too"!
I have dragged my feet over it but next week we are changing to morning kindy 3 hours on Monday and Thursday and 4 hours on Wednesday. Isaac also starts his school visits - 4 Friday afternoons and then 3 Thursday mornings - this Friday afternoon he spends one and a half hours in the school library learning about the alphabet.
So looks like today and tomorrow are some of our last slow at home together days. I am full of cold (again) so we'll just have a quiet time together (with Heidi stopping it from being too quiet as she continues her dramatic development and climbs onto tables, slides off the bed and attempts to get down stairs!)
He seems entirely too small for school. It has been good having Heidi here so we can see there are children smaller than him!

Kapahuka Noah

2010-07-29T19:16:00.002+12:00

Noah takes part in his school kapahuka group learning about traditional Maori dance and singing. He came home after kapahuka, looked at Heidi and decided to teach her about her heritage. I said "That's a good idea, sing your songs to her." But he had to disappear downstairs first. He went to the dressing up box and came back up dressed in a pirate hat and striped T-shirt and said "I am a mouldy lady" - he wouldn't be persuaded that the word is Maori (actually the the pronunciation is like mouldy with the 'd' changed for an 'r')
Luckily Heidi didn't seem to find it racist or offensive but rather enjoyed joining in with Noah's songs!
Today we went to ABCD group and six children with DS were there.
It is such a supportive group, I will really miss it when Isaac starts morning Kindy which he will do in the next few weeks to get him ready for school. Music time was great and it was wonderful to see how much Heidi enjoyed herself. It was also quite reassuring to see that at this group her usual group behaviour changed somewhat. She preferred to stay close to me and steered well clear of the only man in the room. This is in contrast to her usual enforced gaiety and arms out to everyone, so maybe just slowly she is beginning to bond to us.
Of course we are beginning to bond to her too. (Even Paul thinks she's cute although she won't go to him) Already we know it's going to be hard when she leaves.

Heidi took some steps

2010-07-23T14:01:00.003+12:00

Little Heidi is making immense progress. I am so used the the slow planned and 'hard worked for' steps that children with Down syndrome make that she seems amazing - although according to the book on baby care I got out the library (havigng forgotten how to look after babies!) she is a bit behind.

She took about four steps in a row yesterday and of course wouldn't repeat them when I got the camera.

We stood there applauding and Isaac looked at us as though we were crazy "I can walk and you don't clap me!"

She investigates everything - the photo is her amazement at he tumble drier. She also climbs stairs too fast.

We just need her now to adapt to Paul - she still literally shakes with fear if he comes close to her.

toddler havoc

2010-07-21T10:02:00.002+12:00

Our foster baby seems to be becoming a cheeky toddler - as soon as she feels really safe she is off exploring everywhere. She can't quite walk but crawls very fast - she made it all the way up our stairs as I was answering the phone yesterday. She has managed to work the photocopier and screw up lots of photocopier paper. I thought our house was baby proofed but she showing me what's lacking.
This morning I was dressing her on the bed in the spare room, turned my back to find her a cardigan, heard a crash and she'd fallen off the bed onto Hannah's "Ab circle pro" (if you are thinking of buying one of these be warned they take up lots of space and are very inconvenient!). She screamed and immediately developed an egg on her forehead - this is of course an access day so it has to be explained to her social worker and mum.
She'd recovered in a minute or two so it obviously looks worse than it is.
Heidi's security is very fragile though, as soon as the situation changes at all she's on high alert, people coming into the room frighten her and she's still very wary of Paul. She let him hold her for a few seconds yesterday but today was back to crying and running to me if he came near. He even had her bottle to offer her today but she just cried when he offered it to her. Every foster child we've had has been a bit wary of men but not to this extent.
Isaac is just beginning to come round a bit, he stroked rather than scratched Heidi this morning and even offered her a half chewed cheese ball!
Noah is rather taken with her especially as he fed her half her bottle yesterday. She finds him quite a novelty as a male who's not frightening.
Heidi likes Hannah too as her voice is similar to mine. Hannah moves out on Sunday though so we'll have to get used to life without all the support she offers the family.
She is only moving to the centre of town and intends to come back for quite a few meals and to care for the kids to get their carer support money (In NZ children with disabilities tend to get around 21 days a year of 'carer support' this is basically babysitting money of $64 a day - 24 hour day it's not great pay - which is paid to a carer so mum can get a little time off) So I hope we'll still see a lot of her.

clinging baby

2010-07-18T18:12:00.003+12:00

all the time she's awake baby Heidi wants me to hold her. I can do a lot of things with one hand but not everything!
Isaac is of course very jealous. He had Paul holding him in church today which he usually loves, but instead kept holding his arms out to me. I tried to give Heidi to Paul but she just screamed.
Last night I put her in her cot to sleep and came downstairs for my pizza even though she was crying. She cried herself into a distraught state so I went back up and she'd cried so much the bed and her were covered with vomit (time to bring in Paul!)
Then I remembered the social worker mentioning (among the horrendous other history) that she had been left alone for 9 hours one day. SO I guess being alone brings real thoughts of abandonment for her and I now have an excuse to leave all the housework and sit on the bed while she falls off to sleep.
I so hope the baby sling I ordered from trade me arrives tomorrow!
I have just discovered that sitting her in a high chair in front of a praise baby DVD also keeps her happy for a while - long enough for me to type this post with two hands.

pretty in pink

2010-07-15T11:27:00.002+12:00

Our little one is here and looks lovely in her pink babygro and bobux shoes.

She clings to me which is wonderfully rewarding to me although I know it's just because she's frightened and needs someone. At the same time she scratches quite viciously = a great example of disorganised attachment - she drew blood scratching her social worker.

It won't be long before the novelty wears off of having to type one-handed as she screams if I put her down. Meanwhile we'll have a blissfully boring day of cuddles, milk and sleep.

She is tiny, her little hands are so cute and thin (mind you I'm used to the chubby starfish hands of DS) - hope you like the photo

baby girl Heidi

2010-07-14T13:29:00.002+12:00

The social workers are bringing round a one year old baby girl in about an hour. It is about 20 years since I had a baby girl to look after so I am really looking forward to pink, pink, pink!
We heard on Monday that she might be coming so I spent a lovely time yesterday going round some second hand shops choosing cute girly clothes (the four boys I had with me - Noah Isaac and 11 and 13 year old brothers I was looking after while their grandma worked- didn't seem to enjoy it quite so much!!)
We know the baby can't walk yet but don't know much else about her except that she goes to people very easily - far more easily than a baby of that age should.
Paul is trying to remind me of the stresses the last two toddlers caused, but before she's here we can just dream that this will be a cute needy child ready to soak up all the nurturing we have to offer.
Noah has helped Paul move a cot into our bedroom and I've dug out the double pushchair, the baby car seat and baby milk and bottles. I think I will call the baby Heidi in this blog (this is actually not her name in case you were surprised at a Swiss name in NZ!) after one of my childhood heroines.
I can not imagine just how scary this move will be for baby Heidi, I am trying to think of calming, nurturing things to do when she arrives. I need to find Isaac's praise baby DVD and some nice scented baby bath then I think we'll have a quiet few days at home so she has a chance to get used to us and recover from her injuries.

Wellington weekend

2010-07-12T14:49:00.002+12:00

We just livened the school holidays up with a weekend away with the boys staying at the holiday inn in Wellington. (We may be about to liven things up still more as we've just heard about a baby girl who needs fostering but we'll wait and see on that)
It felt like a good break much longer than a night.
Lily didn't want to come as she had her High School Musical dance group and she stayed the night with her boyfriend (and his family!) instead.
We went to the Weta cave and saw a few of the bits from Peter Jackson's movies - this was much more fun for Paul and me that the boys so we didn't last long there - plus its only a small place.
Then we went to the Zoo. It was probably one of the coldest days of the year but at least not windy or raining. The boys were able to feed the giraffes which they both loved, they showed less interest in the tigers and lions though and search as we did we couldn't find any zebras (which Isaac loves) even though their website seemed to show some.
We had a swim at the hotel (and I moaned and moaned about my heavy cold and made Paul do all the work) then went to find a great pizza take-away - pizza pomandero which was advertised in our guidebook.
Next morning there was a doctor Dolittle movie on Sky and Isaac was entranced by the talking dogs. Then we had an enormous breakfast as part of our hotel package and walked down Lambton Quay (via a great magazine shop and Borders) to the cable cars. We had lunch at Kircaldie and Stains (which was surprisingly cheap) then drove straight back to Palmy for a special evening service at church where Daniel Rodreguiz was singing.
All in all a lovely weekend and it means we don't need to do anything today but let the boys rest!!

cold school holidays

2010-07-08T14:07:00.003+12:00

The winter school holidays often seems to have the kind of weather where you just want ot wrap up warm and stay home.
Luckily Noah and Isaac are happy to do just that, so I can sit and nurse my cold and feel sorry for myself.
Yesterday the boys didn't even get bathed and dressed till lunch time! Hannah is back for Australia and bought us all some lovely presents along with birthday presents for me and Noah from Beth and James. I got a lovely glass apple to add to my collection which they had bought in Berry while they were visiting Jon (my brother) and Bev. Noah has some great toy story games - he has just got the confidence to try the Wii game for himself after sitting and watching Lily play it yesterday. He has finished the first level himself and is SO excited - it is a real first for him to play a computer game properly.

He also got a Buzz board game where Buzz races round knocking off players tokens. It caused some amusement for members of our church homegroup that meets here as we discovered that Noah had been trying to set up the game during our group (while he should have been asleep) but had a few of the stickers in the wrong place - very interestign to see who wanted to ge the stickers totally smooth and in the right place.
Today we got it all made and luckily all the bits are still there (even if we had to unlock the garage to find the middle bit which Noah had taken into the garage to try to find a screwdriver to insert the needed battery)

I can report that the game is much faster to play than mousetrap and it is possible to cheat a bit by having stickers not properly stuck onto the tokens so they don't drop out when they should!!
During the writing of the last paragraph we saw the opposite of Noah's delight at playing the computer game as the control no longer seems to do what he wants it to! I may have to go and intervene!!

Isaac the lightweight destroyer

2010-07-01T14:08:00.004+12:00

Isaac may be tiny (87cm and clothed weight 12.2kg at nearly five) but he can inflict massive damage on the house. He has just pulled the game of 'mousetrap' (see my last post) on the floor and whenever he can gets into Lily's room and pulls out all her DVDs.
He is quite a different boy now compared to the four years he was tube fed. No more pain and a real cheeky character - he loves to pick up a toy (usually a toy animal) and just carry it round and round the house.
We still worry a lot about his feeding, trying to find ways to slip in calories or teach him to drink, but he is content enough with just the small amount he eats and has no desire to learn to drink. He learnt to eat jellies in the UK which is a great help with getting in fluid and sometimes surprises us by eating something new like in these photos where he's trying ravioli.

It was a relief at paediatric clinic today that although he hasn't gained any weight since December and has lost 2cm in height (that was actually because they measured him standing rather than lying down but it give a better weight to height ration so who cares?) the paediatrician doesn't think he needs a naso-gastric tube or other intervention. He has prescribed some nutrini drink that has 1.5 calories per ml which I think I can mix with weetbix so hopefully that will help.
Isaac turns five in October so his early intervention teacher has started his ORRS application (this is the school funding for children with special needs in NZ). We were talking about his progress at his kindy IEP and once you start thinking about ORRS you suddenly realise just how behind your child is. No toilet training (what a joke he only wees about twice a day anyway as he doesn't drink!) Only uses three words spontaneously to communicate - 'up', 'walk' and' dog', can't recognise his name on the board etc etc. Still he is our cheeky well loved boy - we just think of him as a toddler really.
I know some parents choose not even to read their child's ORRS application - I'm not like that, I want to help write Isaac's just to be sure he gets funding - but it's still tough, even after already doing it for Lily and Noah it's still hard to think about everything your child CAN"T do.

Noah doesn't 'hit' puberty

2010-07-01T13:51:00.003+12:00

Yesterday was Noah's 11th birthday - he was expecting to 'hit' puberty then, like one of his books suggests. Unfortunately (for him not for me - I want him to stay my little boy) he did not wake up with a voice gone squeaky and needing to shave! That aside he had a good birthday. It was a bit of a quiet start as Paul was in Auckland (for the NZ trade and enterprise awards which he didn't win) and Hannah was in Sydney with Beth. I'd been up in the night with Isaac so when I woke at 6.15 thought I'd allow myself a few more minutes to doze - next thing I knew it was half past seven, so a big rush downstairs to open his presents before Lily left for work at five past eight.

I'd tried to explain that going on holiday to UK and Disneyland really counted as birthday presents but Noah wouldn't believe that so I ended up getting as many little presents as I could for him then buying some others in the toy sale that only started that day. This meant presents in the morning and at tea time which suited him well.

Eleven is a great age to be regarding making a number cake - just cut a rectangular cake vertically in half and there you are! Paul also picked up some Dunkin Donuts on his way back from Auckland so Noah was very happy.

He especially likes the mouse trap game and the watch we got with money from grandparents and the book of mazes he got from Sam.

I am already remembering why I held off 'mousetrap' for so long - It is very fiddly to put together if you have poor fine motor skills (and leads to angry frustrated outbursts) there are loads of little pieces to loose and the game takes ages to play! Still it kept Lily and Noah occupied for about 40 minutes this morning and I now have to leave it on the table for them to finish tonight.

winter's here

2010-06-28T11:09:00.004+12:00

Some photos of the boys in Disneyland to cheer us up a bit as we're now into the middle of grey, wet dismal winter weather.

This visit we spent some time in 'Toon Town' and the boys loved going round Mickey and Minnie's houses. Noah was really taken with the dishwasher in Minnie's kitchen and wanted to just sit on the floor watching it for ages!

This weekend has been real rainy weather. On Saturday we got up early (helped by the fact I'm still jet lagged and waking at 5am) to take Hannah to the airport so she could go to Sydney to visit Beth

This was the first time for Hannah to travel alone so she was a bit apprehensive.

When we got to the airport there were two fire trucks outside and everyone had been evacuated and was waiting outside the terminal - the boys thought it all very exciting especially as it wasn't yet light and the flashing lights lit everything up.

Obviously it was nothing serious as we soon got inside and the check in for Hannah's flight was rushed through. They did say they'd be a few minutes late which might affect international transfers so we were a little concerned as Hannah's itinerary only had one hour and five minutes to change terminals and clear security and passport control. We watched her flight leave just before 7am and went to McDonalds for breakfast as a treat for the boys - we also found it was a great time to do our supermarket shopping. We then got to the Warehouse just as it opened (another fantastic time to shop) and treated ourselves to the DVD of 'The Wire' as they had 25% off all TV series and I had read while in the UK that this is the best series ever made (We watched episode one last night and could hardly listen for the bad language or understand the plot but we'll have to persevere as we've bought 2 series!!)

Soon after we got home we got a text from Hannah to say there had been fog at Auckland so they'd landed at Hamilton. There were no seats left on the next Sydney flight from Auckland so air new Zealand rerouted the four people in her situation through Rotorua which had a Sydney flight leaving at 5pm. She went in a mini-bus via Tauranga airport then had five and a half hours waiting in Rotorua for the international bit to even open - Rotorua is an airport as small as Palmy with only occasional international flights. So Hannah's first experience of travelling alone led her to experience 3 NZ airports that I've never been to! Still she's safe in Sydney with Beth and James now and has given James all the England World cup paraphernalia we brought back with us (Unfortunately not bringing any luck to the England team though!)

Yesterday Paul has a conference in Christchurch for the day, so I was at home with just the trisomy tribe. We decided to stay in all day and have a pancake brunch rather then a full Sunday dinner. I watched the last of the series of 'Brothers and Sisters' that we took to the UK with us and then found some more episodes online. Noah and Lily played on the Wii together and it was a good stay at home winter day.

boys and grandparents

2010-06-24T17:08:00.003+12:00

I've finally sorted some of our holiday photos, first my dad in the church grounds with Isaac and Noah, than with my mum and dad in their sun lounge with Noah very reticent to hand over the card to my dad. Paul's mum with both boys and Paul's dad with Noah in their lovely new purpose built old people's flat.

Isaac's jet lag

2010-06-19T10:12:00.002+12:00

I thought I got the worse jet lag ever but Isaac is beating even me. Yesterday he woke up at 1.30am and therefore so did I. I spent the rest of the night up with him as Paul was already back at work so needed to try to get a little sleep.
Isaac finally crashed at 2.30 in the afternoon in his pushchair - I walked back from town with him (in an attempt to get my first lot of exercise since Sunday!) and was so exhausted when I got back that I crashed too at about 4.30pm I had some fairly groggy sleep until 9.40 and Isaac woke up at 10.30pm. He has been up all night again, this time with Paul and I taking it in turns with him. I watched 5 episodes of 'Brothers and Sisters' back to back, then Paul took over. As i still couldn't get to sleep I had a bath at 3.45am then the two boys (Noah was awake by now too!) got in.
I held Isaac in bed with me until we finally fell asleep for an hour but no more sleep since.
We got back on Wednesday morning after 41 hours of travel house to house and zero hours of sleep for me and about 8 for Isaac. Fairly stressful journey as the very first only an hour flight from Manchester to Heathrow was delayed meaning we missed our flight to San Francisco (we actually saw the plane leaving as we landed at Heathrow). Instead we were put onto NZ1 through LAX which meant all our luggage labels had to be written by hand in Manchester (and two pieces of luggage didn't arrive). We also had to sit in the very back row of the plane (the row usually left empty as the seats don't recline and you're right by the toilets) and of course the boys didn't get any children's meals. Once we got to Auckland, realised two cases were missing and reported it, we had very little time to make our connection to Palmerston. We got to the domestic and the boys and I got our boarding passes alright but Paul's ticket had been cancelled for some reason. Anyway we got home on time and have got one case back and just heard that they've found the other one in Heathrow and it will come overnight on NZ1 and should be with us in the morning.

Otherwise a really lovely trip - I will post photos and video when I finally hav ehad enough sleep! We feel quite proud that the boys and us coped so well.

holiday progress

2010-06-03T02:52:00.002+12:00

haven't had much access to a computer these holidays so a quick update
we had a great time at Disneyland - highlights for Noah were being trained as a Jedi knight and fighting Darth Vader and two storm troopers, he also plucked up the courage to go on California screaming roller coaster and loop the loop - scary for \Paul as he had to go too!
Isaac liked best the tiny petting farm they have behind big thunder mountain but he was also quite impressed with small world. i liked going out to eat at the cheesecake factory - no one could finish their portions.
We are now in UK and have met up with lots of family. Mum had a good birthday and its great to see Paul's parents settled in their wonderful old people's accommodation.
Jet lag is still hitting pretty hard I've only slept through on one night and most nights get up for an hour or so and have a cup of coffee.
Lots of great shopping here and the exchange rate is in our favour so we should have another good few days.

holiday soon

2010-05-19T10:05:00.002+12:00

We're counting down the days until the boys and I fly to LA and meet up with Paul, then 5 days at Disneyland and onto UK for my mum's 80th birthday.
We have packed and unpacked cases, decided what things of ours Paul could squeeze into his case (avoiding white powder and children's undies so that he isn't suspected of being a drug smuggler or child pornographer) and think we have entertainment and essentials for up to 48 hours in our hand luggage.
I keep thinking of more things like vouchers for money off deals and documentation of Noah's behaviour issues (then hopefully we'll get a guest assistance pass at Disneyland) and food and fluid that Isaac is likely to eat on the journey. We are very lucky that it's a 12 hours overnight flight and that Sam and Anika are meeting us at Auckland airport to help us transfer terminals. I think the worse bit will be once we're through passport control at LAX when I have to collect all our bags and make it outside - but then Paul should be waiting!
He is having a good but very busy time in the states with NZ trade and enterprise. Yesterday he did his pitch in San Francisco to the judges of the competition, today is lots of networking then catching the red eye to Washington for breakfast at the NZ embassy. After two nights in Washington they catch the train to New York then he flies back to LA to arrive 20 minutes before us.
Noah is very excited and keeps trying to pretend it is already Saturday. he also likes to take out his toys from his bum bag and keep looking at the new DVDs I've bought to go with our portable DVD player. They are having trouble with his behaviour at school and he has ended up in time out again (after climbing out a window) and getting told off by the head teacher.

New Mother's day tradition

2010-05-11T21:46:00.002+12:00

One of Hannah's friends came for lunch on Sunday. She can't be with her mum at present so I've always said to her that so long as her mum is happy about it I'll be a stand-in-mum until her own mum is able to be with her again. Hannah's friend bought me a lovely carrot cake that said "Happy Mother's Day" - I thought that was so lovely.
I also got the "Don't tell mum" gift which Noah had made at school - it was a nice flower in a vase, with a rather bent drinking straw stalk where Noah had crammed it into his wardrobe. Hannah and Lily had printed off some lovely photos taken at the Down syndrome ball and also got two new beads for my necklace and Isaac (with the help of Paul and some encouragement from me) gave me two Jodi Piccoult novels that I can read on our holiday to UK. Sam phoned to wish me happy Mother's day and said that he and Anika have just moved into a new flat in Auckland - one with less mould and damp! Beth sent an email to say she and James have found a flat in Sydney - it costs quite a lot more than the whole four bedroomed house we rented here - and has one bedroom and a small bathroom. It is very convenient for uni, train station and a shopping mall.

At lunch time at the last minute (so late in fact that Paul insisted we eat lunch before it got cold before lighting the candles) I thought to get out the candles we use (occasionally) on Friday night when we have our modified Shabbat celebration. This time instead of lighting a candle for each of our children, we lit one for each mother represented round our table. So I lit a candle for my mum Peggy, Paul for his mum Joan, Noah lit one for me, Lily lit one for her birth mum, Vicky, Hannah for Isaac's birth mum, Rachel and for our Rachel's birth mum, Margaretta. Hannah's friend lit one for her mum and then we lit one for the mum of our recent foster children A and U.
We usually remember the kids' birth families in November each year at Thanksgiving, but it seemed a good idea to do it on Mother's Day too. After all I'm sure all the mums mentioned would have been thinking of their children. (Not strictly true actually as in the UK Mother's day has already been, midway through Lent). I think we'll continue it as a family tradition - I do love traditions!

The letter in our church news sheet for Sunday was very good because it didn't just talk about birth mothers - that may have something to do with the vicar having been adopted and being a foster parent!

Benefits of being a foster parent

2010-05-07T14:23:00.004+12:00

You get a crash course in all the negative aspects of your personality without having to pay for psychotherapy
Who needs an early morning jog for exercise and to wake up when you can have foster children wake you at 5.30 am to change two dirty nappies the contents of which are spread all over the house?
You can test the truth of your glib acceptance of "people matter more than things" when you realise that a misbehaving foster child just broke your best cup which will cost three full days fostering allowance to replace
You realise that your birth children are well dressed because they own undies and socks, have clothes and shoes that fit and even have pyjama tops and bottoms that match. You also realise that if your birth children went to stay elsewhere they would not carry their clothes in bin-liners
You get to know how limited your own self-calming strategies are when a foster child with no self-calming strategies has a tantrum lasting over an hour
You get to value and use every second of free time you get
You get a crash course in asthma management over the internet one evening when a wheezing foster child arrives with asthma medication but no instructions
You realise that sleep is life's ultimate luxury and all that's needed to make you happy is a bedtime of 9.30
You realise that your birth children have tons of possessions when you buy foster children a new toothbrush (first rule of fostering - no child comes into care with a toothbrush) and they value it so much that they take it to bed with them
Who needs to lift weights for exercise when you can have a tantruming three year old foster child refuse to walk so that you get to walk to kindy carrying him under one arm while pushing two other children in a double buggy?
You get to test your patience with children when you spend twenty days straight teaching them to say "biscuit please" and they still whine "Wanna biscuit"
You get to test your patience with adults when another one says "I couldn't foster, I would never want to give them back"
You get to read multiple parenting books to try to reassure yourself that you are doing everything right when after implementing a wonderful calming wind-down bedtime routine for twenty days straight, you still need to spend up to two hours sitting quietly in their bedroom before the foster children will settle
You realise that perhaps for the first time in their lives, two little boys are being put to bed with a bedtime routine and sleeping in a house that is safe and that makes it all worthwhile.

Noah's viking hat

2010-05-07T09:08:00.002+12:00

After foster children leave I want to have a tradition of going out to eat as a smaller family, so last night Paul and I with Isaac and Noah (Lily and Hannah were out) went to eat at the food court for late night Thursday closing.

Then Noah and I looked round K-Mart while Paul tried to persuade Isaac to drink some of his McDonalds thick shake. Noah loves the movie "How to tame your dragon" and was delighted to find a Viking hat like hiccup wears. As it was only $6 we bought it. Noah said something about his f******* hat and at first I thought "Oh no, what language did the foster boys teach him?" Then I realised he just can not pronounce "Viking". I have had to put a special note in his school bag today to tell the teacher he is not swearing if he tries to tell him about the hat!

Noah was also quite funny when he told me. "I made a 'don't tell mummy' at school today" Could it have anything to do with the upcoming Mother's Day do you think?

boys are going

2010-05-05T09:48:00.002+12:00

We had really been counting down the days till Friday when A and U were planned to move on. But now this morning I've heard that their mum has revoked the order they were under so they have to be moved by Thursday lunchtime.
I have to pack their stuff as they sleep tonight and tell them they are leaving first thing tomorrow morning.
Suddenly these boys don't seem such monsters anymore - they still rage and tantrum and won't sleep but we know it's because they are damaged little children, hard work for us but the hurt little children bit matters more. And so we hope and pray that the family member they move to live with can also see them as such and continue to work through the lack of routine and temper tantrums so the "little children" bit can shine through.
God bless you A and U.

Last chaotic weekend (we hope)

2010-05-02T17:43:00.003+12:00

When people say to me "I couldn't do foster care. I would hate to give the children up." I sometimes wonder what they mean. Usually kids in foster care (for lots of very good reasons not their own) are not nice lovable kids. A and U are very hard work with very few rewards at the moment and we are just about counting down the days until they move. Should be Friday, so that we can have some quiet family time before we start our travels to the UK for my mum's 80th birthday.
A refuses to obey almost everything I ask and U follows his lead whenever possible. They don;t want to sleep when I put them to bed,then they don;t want to wake up from their daytime naps. They continually touch things we ask them to leave alone - the computer, the TV, the fridge, the toothpaste, the microwave. A deliberately poohs in his nappy once he's woken up in the morning after telling me he doesn't need the toilet.
And the tantruming, whinging and crying is getting us down. Lily has to leave the room as the high pitched noise hurts her hearing aides. They also don't stay in the place I put them to finish their tantrum (I choose somewhere near me in eyesight in case there are issues of being left alone in the past) just repeatedly get down until I worry about hurting my back lifting them.
It still takes an hour or more for them to settle at night - with getting out of bed, giggling, trying to keep each other awake and so on.
ON Saturday we finally gave way to Noah who had been asking to go out for lunch for the past three weekends. So we went to "Donalds" as A and U shout each time we pass McDonalds.
We let the boys play in the playground as I crossed the road to do some supermarket shopping so Paul had to get all four boys in the car to come and pick me up. He say it is an experience he will never forget, carrying post-op red-eyed Isaac in one hand a screaming A in the other and persuading Noah to hold hands with U and follow!
But it's made me quite proud of how well we are managing and its made it clear that we should never take two pre-schoolers again!

home from hospital

2010-04-29T20:04:00.003+12:00

Isaac and me before surgery - he kept looking at me and signing "hat" - his cute pyjamas said "Hospital Property" all over them

Isaac just before bed tonight

Today started at 5.45 with changing two dirty nappies. By 7am I was simultaneously trying to make two packed lunch boxes, get four boys dressed, give Isaac his last food and drink before surgery, fill in his surgery information forms, pack an overnight case for A and U, pack a bag for day care for A, pack clothes for Isaac at the hospital and text Beth as she flies to Sydney - got a bit stressed.

I finally managed to get five of us organised to take Noah to school (Lily pushing Isaac in the single pushchair and me pushing A and U in the Double) only to find that Noah still had not managed to put on his socks and shoes!

We made it back from school by 8.50 to find that both the boys taxis that were supposed to come at 9.00 were already waiting. Lots of moving boys around and A and U had gone to be returned tomorrow at 9.00.

I decided I would walk to the hospital to get my daily exercise and have a chance to go shopping for half an hour - so easy with just one boy compared to three.

I sat for a cup of coffee then noticed the pushchair - mountain buggy was quite hard to push. The front wheel was entirely flat and needed a new inner tube before there was any hope of using it.

So we ended up going to hospital by taxi with a lovely driver who listened to my story about Isaac going for surgery then charged me a round ten dollars rather than the $10.40 his meter showed.

As is usual in hospital youngest patient goes first so Isaac was first on the list as he was the youngest patient by about 70 years! We were warned the surgery would be at least one and a half hours and it took about two and a half from leaving him after the anaesthetic until I was called to recovery. Paul was hoping to be with me but ended up being the only haematologist in the hospital and having two new patients with leukaemia.

This may have been Isaac's sixth surgery but the waiting time doesn't get any easier. I walked down to Terrace End to the lovely magazine shop there, spent some time in Paul's office while he reported bone marrows and some time in the hospital canteen. The ophthalmologist said there had been lots of scarring from the previous surgery and he wasn't sure how straight Isaac's eyes would be. He said they'd be very red for a few days.

Isaac also had grommets put in so when I got to the recovery room he was oozing blood from both eyes and one ear. We got back to the day ward at about 4.30 and two hours later he was ready for discharge.

I was so pleased A and U are with other caregivers tonight as we didn't get home until 7.30 after buying groceries and pizza.

We have just put in Isaac's eye drops and ointment, taped socks over his hands to prevent him scratching his eyes and now he is off to bed with me soon to follow I think!

hurtful comments about Isaac

2010-04-28T16:01:00.002+12:00

Isaac got invited to a birthday party at the weekend which was a major first for him. It was held at our local playcentre Lollipops.
We sat down for afternoon tea with about 8 little boys and one rather obnoxious child immediately looked at Isaac and said "He's got a funny face". Mostly children's questions are very open and even cute but this little boy seemed to be coming from a nastier side.
I calmly replied "He's got a funny face because he's got Down syndrome. He takes longer to learn new things"
Then he said "Is he a baby?" I explained how he'd had problems eating and was very small - still with a slightly "off" feeling.
Then when it was time for the birthday boy to open his presents, the nasty boy pointed to Isaac and said "I expect he's bought a baby toy"
Usually stuff like this rolls off my back but I found this little boy very hard - he did continue on asking quite inappropriate questions of other people too and I think some of the adults there were a bit embarrassed by him.
Made me realise we still have a way to go until our children with DS are accepted as we'd wish - thank goodness for the school our boys are at where the other kids are fantastic with he kids with disabilities.
I feel a bit over protective of Issac maybe as he's been through so much and tomorrow he has his sixth surgery this time for grommets and squint. The fostering agency has found another caregiver for A and U for the day and overnight.

goodbye Beth

2010-04-27T16:30:00.002+12:00

Beth and James were in Palmy for the last weekend to attend a wedding and say goodbye to us before they move to Sydney on Thursday. This is the same day that Isaac has his surgery for grommets and squint so I shouldn't forget it.
It was great to see them and Beth even started the day (at 6am) by sorting out a squabble between A and U then changing a dirty nappy so she was very welcome!
The boys were having a medical assessment today so I wrote a report which helped me realise what emotional problems they have with relaxing to sleep and the like but also what amazing progress they've made i just a few days here. Both boys didn't have a tantrum when they were dressed the morning and then both said "Get down please" at the breakfast table - two firsts.
We are also understanding more and more of their speech and enjoying listening to them - a "brushteeth" for a toothbrush and a very worried look from U when I said the thing in the newspaper was a crossword as he thought I was angry!
I am learning to make the most of every moment of the day, never going upstairs empty handed and so on. And I so SO enjoy the few minutes a day I have when the boys are asleep. Paul is tending to take over in the evenings now sitting in the boys room doing emails on his I-phone so this means I can heave a sigh of relief at about 7.30 and then crawl into bed soon after 9.00!

sad little boys, exhausted carers

2010-04-21T21:36:00.002+12:00

Life is very hectic - it is amazing how exhausting it is trying to constantly give out vibes of calm and reassurance to two traumatised little boys.
They must be settling as they are showing us some pretty massive tantrums now over such things as sitting in a pushchair, getting dressed or having to come for a bath.
I dared to take the double pushchair to the shops today as A was at daycare. A tantrum started in the plaza so we walked calmly (at least I hope it appeared calm when I was holding U's hand to stop him tipping out of the pushchair and Isaac's hand to stop him scratching U as he was so scared by the loud crying)to the square 0 the park at the centre of Palmy. We then had 20 minutes (there is a useful clock there so I could time it)of totally out of control screaming, drooling, leaning out of the pushchair upside down while I tried to talk calmly to Isaac about the ducks round about.
Once the tantrum was over U was back to his very charming self. He's had 5 tantrums today so lets hope we've reached the worst!
U is very attached to a pair of shoes his mum gave him which are too big for him to walk in - but today I managed to buy him a pair that fit (this involved another tantrum I've just remembered but a relatively Small one which didn;t involved needing to leave the shopping centre) I still let him wear the big pair to bed he only needs the new ones on occasions when he has to walk!
It is amazing to see these two little boys changing everyday - they love books and although they're very delayed in language they just love singing songs and trying to talk. They so hate bedtime though - it's a bit sad to wonder why
I have taken to watching Jon and Kate plus 8 as it makes my life seem relatively quiet!

toothbrush to bed

2010-04-17T09:20:00.002+12:00

An experienced foster carer once told me she had never known a child come into care and bring a toothbrush. A and U didn't come with a toothbrush of course, neither did they have any toys, socks, undies or much clothes that fitted.
They do however want to squeeze themselves into any clothes that remind them of their mum and the little one U insists on wearing his several sizes too big shoes around the house all the time without socks.
I asked Paul to pick up two battery operated toothbrushes on his way home from work yesterday - since then the boys have barely been separated from them and even slept cuddling them.
Suddenly it seems as if my children have so much.

two sick boys

2010-04-16T09:18:00.002+12:00

Our two visitors have arrived the story seems to be changing somewhat especially the "spend all week in day care" bit
The boys are very cute and obviously sad - they have no idea why they left mum. They respond to calming so have obviously had some good parenting sometime.
We had to start by taking them to the holiday programme evening that Noah had attended bit loud and overwhelming.
They were very sad going to bed and U (the two year old) then vomited over all his cot bedding then fell asleep. I thought at first this was just stress but as he repeated it twice in the night and then had very dirty nappy this morning and as his 3 year old brother A is now asleep on the couch with a temperature, it seems it is not just stress but a bug and a reason therefore to not go to daycare but give me a day shut in at home with four boys!!
Beth sent a text last night reminding us that she is in Palmy next weekend and asking where she will sleep!

Gisborne holiday

2010-04-14T21:48:00.006+12:00

We had a lovely three nights away in Gisborne - even the five and a half hour journey wasn't as bad as expected although it was still quite an adventure in the dark and rain on the windy narrow road leading from Napier.

We stayed in the Captain Cook motel right by the statue

Just along the beach is the statue of Young Nick (the first person to see New Zealand) Hannah and Noah said "Land Ahoy" by his statue and then at the playground.Isaac had a new first when he was served and ate in a restaurant - we were at the Lone Star and hadn't ordered for him but the waitress asked if she could bring him some ice-cream .

On the way back we stopped at some hot springs

it was a lovely walk through the bush to get to them

then we spent the afternoon in Napier.

On the fostering front, we had a lovely time having J back with us for two nights - it was interesting to hear what she remembered of her time with us. Her court case has still not happened after more than two years but there should be a 9 day contested hearing in July.

We have just agreed to take two little boys aged 2 and 3 for two weeks - they arrive tomorrow afternoon.

Isaac's first Easter egg

2010-04-05T11:42:00.003+12:00

It's hard to believe that a year ago Isaac had never eaten. We would never have believed if you'd told us last Easter that this year he would see his Easter egg and do this!
I don't buy the children too much chocolate - they have a small egg from us and a small egg from my mum and dad (and this year Beth sent them one too) - that way I don;t have to spend much of the Easter break policing how much chocolate each person has eaten and which left over bits belong to who. In fact this morning we are just left with 3 tiny chocolate eggs - Lily holds the record for making chocolate disappear the fastest!

Happy Easter

2010-04-03T11:14:00.003+13:00

pictured is our Easter egg stash before my sister Caroline and family visited yesterday. As I couldn't find any Easter chicks we used our bath ducks on the Easter cake (which had the slight disadvantage of a moister cake when they leaked a bit!)

It was a good time and we had a very late lunch with the five of them arriving from Wellington and Sam and Anika arriving from Auckland. We had just finished lunch at 4.30 pm when Hannah realised it was nearly time to go to the movies with the Zone 21 group (the youth group short for chromosome 21 that she helps lead for young adults with DS) she also kindly took Noah, Bret and Caroline left soon after so within a matter of minutes it went from complete chaos to adult calm (especially when we put Isaac who was the only child left down for a sleep) and Paul and I sat in the upstairs lounge and talked to Sam and Anika for a while without interruptions!

Both are really enjoying their jobs and they are actively looking for new accommodation as their current place grows mould everywhere.

Over the next few days, we have been asked to provide 2 nights respite care for J the little girl we fostered for 15 months who left us last June and we are also going to meet up again with the teenage girl we sometimes have stay with us who has recently been through lots of (mainly negative) experiences.

Paul has a clinic in Gisborne next week and rather than just him fly there as usual, we are going to drive there and have a kind of holiday for a few days - that is the boys and I will have a holiday and Paul will be at the hospital doing a clinic!

Noah in the kitchen

2010-04-02T11:03:00.002+13:00

Noah has tried to help over the last three days off school. One day I came down and found the island unit of our kitchen completely clear - unfortunately everything that had been on it was now neatly on the floor (including sharp knives for Isaac to play with).

Yesterday Noah called me to look at his "collection" - everything he could find in the kitchen had been put in a carrier bag on the floor - there was a bag with Isaac's leaking cup, another with a flower pot from the garden, one with the food we were going to have for tea and all the Easter eggs stuffed into another.

He has also invented a new method of restraining himself at meal times - just stretch your t-shirt over the chair!
This morning Noah showed a lovely example of his concrete thinking. He was in our bed and Paul rather affectionately called him "you funny old thing" Noah said "I am a boy not a 'thing' and I am not old. You are wrong two times dad."

Not to be outdone Isaac showed me how his language is progressing. I gave him his breakfast (usually a high calorie mixture of Weetbix, nutella, pediasure powder, cream and a slurp of iron medicine) and said 'Oh dear I forgot the iron' Isaac started growling and I was a bit puzzled until I realised he was signing 'lion'!

three more days of school

2010-03-30T15:27:00.002+13:00

I'm needing a rest after looking after the two little boys for respite care (by the Sunday afternoon they were beginning to settle into our routines but them it was time for them to go home) I was talking to my mum on the phone about how hard it had been and she said (in the way only a mother can) "Well, you're too old. If you DID go out and do paid work Angela, you would be retiring in seven years time." No better way of reminding me of my age!!

I was just thinking that perhaps we'd have a nice quiet week this week when I realised that it ends with Good Friday and with that two weeks school holiday. Noah can't even go to school today as he has another nasty infection on his knee needing antibiotics and Isaac has just finished kindy for the term. Still one good thing about having two extra live-wire little boys for respite is that just Noah and Issac seems easy - it reminds me of the whole reason for having children's birthday parties, or of having childbirth contractions - it's so lovely when it's over!

siege mentality

2010-03-27T14:54:00.004+13:00

Have nearly survived 24 hours with respite foster children - just got 2 year old down for an afternoon sleep, 4 year old watched half a DVD with a lot of support from me about needing a quiet time. I am existing on a lot of coffee and sometimes seem to be coping just minute by minute with a lot of help from Paul.

I am remembering how hard parenting is with little sleep (2 year old resisted sleep until 8.45pm last night and woke at 3.45 am and 4.15 am - but mostly it was me not able to get to sleep while I wondered who would get out of bed and end up where)

Also remembering how when you have lots of little children you have to go out no matter what the weather - we had a wet visit to the park in the just about stopped rain - (Paul and I each having one boy on reins and one older boy not listening to directions!) and how strapping four boys into car seats is one way to contain them all for a few minutes.

Amazing how quickly kids without disabilities learn eg. how to get out of harness on highchair and find dangerous things to do eg. walk along inside of upstairs banisters

The boys foster mum (who is about my age) has five foster children aged 6 and under and because of this the fostering agency force her to have respite care - we thought she'd be going away for the w/e but although we have the two boys she is left at home with another two 4 year old boys and a 6 year old girl. I think the boys are used to a very noisy household and for probably the first time ever I'm think we run an ordered calm household!

Still they go at 2pm tomorrow and I am bribing Noah (who is exhausted after camp) that if he behaves (ignores the boys) we will go to the movies tomorrow afternoon.
My two girls have escaped - Hannah is at a beach wedding and Lily is having a two night sleepover at her boyfriend's (more innocent than it sounds!)

I know that all their bravado hides quite confused and scared little boys, but wouldn't it be nice and much easier sometimes to have a child who just showed their fear directly?

No Noah

2010-03-26T11:25:00.002+13:00

I am feeling quite adrift at the moment as Noah and Paul are away on school camp for three days. It's made me realise just how much of my life revolves around Noah. Now we have no getting to school routine and I slept in till quarter to eight on the first morning - this morning we were almost late to Isaac's mainly music group because it is so linked into dropping Noah off at school. Isaac is enjoying the time with me I think, although he couldn't get to sleep the first night without Noah in the nearby bed. We keep signing "Where's daddy" and "Noah Goodbye" and Isaac seems to realise something is very different.
It's not that we haven't been busy - Isaac's behaviour therapist came on Wednesday morning, yesterday was ABCD group and then we went with Hannah to the VIP evening at the Plaza in the evening, it's just that with only four of us (me, Hannah, Lily and Isaac) the house seems so quiet and aimless somehow. Very fast to get food, hardly any tidying or washing to do - is this how it all all the time for most people in their fifties?
Paul has phoned occasionally with such gems as "Noah put his foot in Wellington harbour." "Noah is lying on the floor of Te Papa (museum) having some down time" But on the whole it seems Noah is trying very hard and they are both having a good time.
This afternoon my lazy time will come to an abrupt end as two little boys aged 2 and 4 are dropped off to spend the weekend with us and give their foster parents some respite. Then Paul and Noah get home at about 8.15 - the plan being that the three boys will be fast asleep by then. Hope it works!