Thursday, December 31, 2009

Congratulations Beth and James!

We have wonderful news, Beth is engaged or as Noah puts it "You are proposed Beth."
It happened on Christmas day but she asked me not to blog immediately as she wanted a chance to tell people rather than have them find out through my blog as has happened with news before!
It was all very romantic, with James formally asking Paul and I on Christmas Eve if he could propose to Beth next day. He had been planning it for ages, with the help of Sam and Anika - he had got a friend of his to make the ring using info from a supposedly secret file of Beth's wedding wishes -he hid all the emails and texts about it in his draft folders so that Beth wouldn't come across them. He had kept it all secret from Beth for months and Paul and I only had to manage a few hours but it was very hard for me!
On Christmas day Beth drove to pick up James to bring him here for lunch. While she was away, I told Hannah what was about to happen and she started jumping around in glee. We made place cards for everyone for lunch and did two extra saying "bride to be" and "groom to be"
We opened the champagne and Lily stood ready with her new flip video camera.
I haven;t got the video to post as Beth was so crying with joy that she didn't want to be filmed - (and also Lily has deleted everything she recorded on Christmas day so that she can film the TV instead!)
James had proposed to her in the rose garden of the esplanade saying "I've just got a little Christmas present for you"
What a special Christmas day!

Since then we have bought three bridal magazines and I am beginning to realise how expensive weddings can be! We have also informed James of how truly enormous my immediate family is and Beth has worked out a wedding party of about twenty!!
Hannah has made invitations for an engagement party next Sunday afternoon. Strangely in the time between showing me the wording and getting it printed the word "Champagne" appeared - as in "Champagne afternoon tea" We are hoping this means Hannah intends to pay for the champagne.
They are still discussing dates rather vaguely but first guess is for the week before Easter in 2011 so April 16th (Paul's dad's 88th birthday)

Monday, December 28, 2009

Our time in Australia

Paul and I are back from our two night visit to my brother's in Oz. We had a lovely time although the Sydney weather showed us how it could be colder and wetter than NZ.

The photo above shows how similar the four of us look, from left it's me, Nigel, Caroline and Jon. The photo above that is of the only time all five children (Caroline's 3 and Nigel's 2) played computer games happily together - as Jon's son Jack said "It's hard when there's 5 children and only 4 controllers"

Jon and Bev have a beautiful house that Bev manages to magically keep immaculate all the time. It was covered with Christmas decorations and lights and Bev also managed to cook some marvellous recipes from Nigella Lawson - I was so impressed with the ham boiled in cranberry and apple juice that I came back home and reboiled the ham Beth had been given from work.

We will hopefully see Caroline's family again soon as they're in Wellington for the new year, but Nigel and Barbara travel back to UK on Jan 2nd. We're hoping we can persuade them to come out again for Beth's wedding though.

Wednesday, December 23, 2009

Christmas letter 2009

cousins Noah and Matthew are similar ages and look a bit alike I think

Nigel and I seem to look more alike every time we meet up - I wonder how it will be with four of us together at Jon's house on Dec 27th?

from left to right cousins Lily, Noah, Matthew, Isaac, Megan and Hannah

Christmas letter 2009
To all our friends and family,
This year I decided to put our Christmas letter on the blog rather than printing and posting, and I'm glad I did as we've had so much happening up to the last minute.

Today Sam, Anika, Beth and James drive to Palmerston North from Auckland so our Christmas will really begin. I've said that if Noah has a sleep during the day (some hope!) he can get up when it's dark (not till nearly 9 pm as it's now mid-summer in NZ) and we'll drive around the Christmas lights and let him stay up to meet Beth.

Today Isaac is recovering well from his surgery and beginning to eat a little more, Paul is talking to someone from Vision Manawatu about inronline (his and Joe's business), Lily is at work in Farmer's, Noah is driving me nuts and Hannah is taking her friend Rachel to catch a bus to Auckland then working at the jewellery store until 9pm tonight.
Lily keeps reminding me how few sleeps it is till Christmas and I keep thinking how much I have to do in so little time!
Major events during the year have been
  • Sam and Anika moving to Auckland and flatting with Beth and James
  • Joe moving to South Korea to teach English after the breakdown of his marriage to Abi
  • Hannah deciding to change her degree to social work and moving back home
  • Moving into our lovely new house
  • Saying Goodbye to J, our foster child where a few weeks became 15 months
  • Celebrating our 30th wedding anniversary
  • Going to Disneyland with Lily and Noah for Lily's 21st birthday
  • Paul and Joe's company inroline being selected for the finals of the NZ trade and enterprise awards
  • Being involved in the National games for Special Olympics and watching Lily swim
  • Seeing my brother Nigel and family in NZ (see photos)
  • Planning to go to Oz on Sunday so Angela , Jon, Nigel and Caroline (four of the five siblings) can be together

and probably the most important of all - after more than four years, all his life, Isaac no longer has a tube or hole in his stomach and is eating by himself! - a wonderful Christmas present which will make up for not seeing mum and dad over Xmas (as they were too sick to travel) losing all our Christmas food (as Noah turned off the freezer) and not having time to do all the usual Christmas preparations.

We have a different kind of life to most people, but a very busy and fulfilling life none the less. I have said to Paul that when we are retired and bored with nothing to do we can relive all these experiences as we don't seem to have had time to appreciate them properly now.
So as we go into the family time of Christmas, I am reminded again of how much people matter and of how much one tiny baby changed lives.

Happy Christmas from
Paul, Angela
Lily, Hannah, Noah and Isaac

Monday, December 21, 2009

Noah can't spoil Christmas

Luckily we were thinking that having Isaac without a fistulas is the only Christmas present we need.
We tried to hold onto this idea when we went into the garage and smelt decaying food and noticed that the electric cord to the freezer was missing then remembered how when I had needed an extension cable for some Christmas lights a week ago, Noah had said he knew where there was one and rapidly appeared with one which we hadn't thought to check where it had come from.
So now all our meat for Christmas has been thrown out along with lots of vegies and ice-cream. We did stop Noah having ice-cream (from the other freezer) after tea yesterday but our heart wasn't really in punishing him - there isn't really any point as it was a long time back and he was only trying to help and punishments never have any effect on his subsequent behaviour.
After discovering this I went back upstairs to find Isaac had pulled out a whole shelf of CDs and was throwing them all over the lounge floor, Lily then told me she had got confused about which Christmas present she had brought for who so had given the wrong gifts to the wrong people while we were away. She had also put on a load of washing and just left it wet in the machine.
Never mind - we're home - and Christmas will come whether we're ready or not!!

Grossest hospital sign

It is pretty gross having a boy who leaks stomach contents, but this sign which was on the inside of the door of the parent's toilet is not what you want to be greeted with after a sleepless night!
Maybe we should have a competition for the worst stuff in hospitals!

Isaac in hospital

Isaac managed to be very cute in hospital, even signing food as he woke up the mornigng after his operation and was still 'nil by mouth'

Sunday, December 20, 2009

tired and home!!

Have just arrived back from Wellington to a fabulously tidy house - amazing how it's the boys who make the mess and how nice it is to have Hannah's friend Rachel staying who is tidying the house while Hannah is at work.
Isaac is pretty miserable but I think some panadol and a good night's sleep and he'll be much better. The red skin is improving already and the surgeon managed to use steristrips across the really sore ulcer like bit so it doesn't look like too much skin has been removed.
Paul and I are exhausted too - I slept in Ronald McDonald house last night and went to bed at 8.30pm having been awake for much of the two previous nights. We had an Indian takeaway and Paul popped in to see Bret (brother-in-law) at his video rental shop just opposite the hospital. Paul went over to sleep on the ward and I intended to read a novel for a while rather than lie down too soon after the Indian and get indigestion.
I must have been tired enough to sleep through the indigestion though and woke at 5.30 am feeling much better.
We have some photos to post soon but I need to sort Isaac out now.
It is the special Christmas carol service tonight but I think we will miss it for the first time ever.

Saturday, December 19, 2009

Isaac after surgery

Isaac looking a bit groggy.

Friday, December 18, 2009

Isaac out of surgery

Isaac is back on the ward after his surgery. He looks a bit groggy but managed a smile. Now sleeping.

Isaac's surgery today

Isaac had a very disturbed night. Awake every couple of hours. Which meant we were also awake. It just confirmed that he really does need the surgery. He is last on this list this morning so surgery should be around 1pm.

Wednesday, December 16, 2009

Off to Wellington

We have just seen the surgeon who said yes Isaac needs surgery. We have to get to Wellington Hospital tomorrow for surgery on Friday and she said he may need to be in for two or three days after that to recover as his skin is so bad.
We are so relieved. We were planning to go to Wellington tomorrow anyway to wave off Nigel, Barbara, Matt and Meg who are currently staying with us and go to Sydney tomorrow.
We are hoping to get a room at Ronald McDonald House but if not will willingly stay in a motel - anything to stop Isaac's pain and leaking gastrostomy.
I now have to do some manic planning and packing and cancel our various Christmas activities.
Will try to post from the hospital.

Monday, December 14, 2009

Seventy-three for lunch!

Yesterday we held the Manawatu Down syndrome association Christmas party here. The weather managed to hold until just after everyone went home so even though it wasn't very hot and a bit windy we could use the garden as well as inside.
I'd got out 40 paper cups and 48 cheap little bottles of soda. When someone came and said we'd run out of cups I was a bit surprised and when I realised all our cutlery was being used I began to think we must have a lot of people attending. It was only afterwards that I counted up and 4realised we had 22 people with Down syndrome here and a grand total of seventy-three! I never knew the house could hold so many!
It was good having people from all age groups aged 1 to 28 and I caught up with a few families I haven't seen for a while.
We had a last minute crisis when Santa (who we'd been told had his own suit) emailed at 10pm on Saturday evening to check that we had a suit. There were no suits available to buy on the Sunday morning but luckily Hannah did some urgent texting and found a kind choir member from church who lent us a Santa suit for the afternoon.
It was lovely to see Santa's seven year old son (with DS) keep going up to Santa as though there was something familiar about him, but even though his older brother was Santa's assistant and his dad had mysteriously disappeared, the little boy didn't quite realise.
Some of the older kids still wanted to sit on Santa's knee and a 19 year old girl with DS turned to her mum and said "This can't be the real Santa can it?"
We caught Noah trying to scale our 6 foot high fence as Santa had told him the reindeer were out the front.
I will post some photos once I get some. (Not of the reindeer who I didn't spot)

Today we took Isaac to the hospital to have the foley catheter out of his gastrostomy hole and as expected it has started leaking loads of food and stomach acid. We have more morphine too in case he needs it during the day as well as at night.
Still only 48 hours and we get to see a paediatric surgeon and hopefully persuade her that Isaac needs surgery (before Xmas) to close the gastrostomy hole.

Friday, December 11, 2009

New kind of normal

Thanks for all your comments and emails about Isaac. Today we've adapted to it all and have reached our new kind of normal. Every time the leakage eases his skin tries to heal and I get a bit enthusiastic that the hole may close, then it starts to leak again and the skin breaks down again. He is not in so much pain now though and is leaking much less so can eat better.
We have the catheter out on Monday, then for two days his skin is allowed to suffer so that when he sees the surgeon at her clinic on Wednesday she will hopefully say "This isn't going to heal, let's operate before Xmas!"

Paul is back from his four days away which is wonderful. The kids are so pleased to see him. He has also put the two dances from the closing ceremony of the Special Olympics onto you tube. Here they are - I like Hey Baby best as it ends with the whole audience joining in. You can see Hannah and Noah dancing if you look carefully.

We're all in this together

Hey Baby

Thursday, December 10, 2009

Nigel, Barbara, Megan and Matt arrive

early morning business

Paul, Beth, Sam and James are at Auckland airport at the moment ready to surprise my brother Nigel and his family as they arrive from UK for their first ever visit to NZ. Luckily the expected 5.25am arrival time has been delayed a bit.

It is also the Diamond wedding anniversary for Paul's mum and dad today, married for 60 years! They have moved house and Paul's dad has moved back from the nursing home to their new assisted living accommodation. I hope they have a wonderful day.

I have been in contact with the home care nurses here today already as when Isaac woke up he smelled quite strange and sweet. When I looked at his wound it was leaking lots of watery yellow stuff and the yeasty sweet smell was overpowering. He has obviously got candida (thrush) I presume that the flow of acid stomach contents was what was keeping the infection at bay but now we have less flow the candida has taken over.

Wednesday, December 9, 2009

Isaac's sorry saga continues

I had a terrible night with Isaac on Monday night - for forty minutes he was just rolling around in pain screaming until I gave him a second dose of morphine (most of the first one had been spat out or leaked out the fistula from where his gastrostomy used to be) then at about two thirty am I gave him some losec and he ate three calciyums in quick succession and they just poured out his side - I think night time is bad because the contents of his stomach become more acid he prefers food to be leaking over his skin then just the acid.
He got some sleep after that but I didn't I just lay there worrying - haven't felt so bad since Noah was in the neonatal intensive care unit ten years ago.

In the morning I phoned the home care team in tears saying I was so unhappy about Isaac and could I bring him in. They got me an appointment for 2pm and again I packed for a possible stay for both Isaac and me.

When we got there Isaac decided to put on a show of not being in pain but being cute, but luckily this didn't fool them once we took off the disposable nappy he wears on his fistula and they saw the hole pouring food and with bubbles of air and the skin loss around the hole.

The surgeon in Wellington had said wait at least a month so I asked if we could have a second opinion from the surgeon at Starship. Unfortunately when the paediatrician managed to get hold of him he suggested waiting SIX WEEKS!

Following the advice of the Wellington surgeon they decided to put a foley catheter into the hole to see if that would stop the leakage and give the skin a chance to heal. Isaac had some medazalom drops up his nose and soon became totally sozzled (very cute) and barely complained when they put the size 8 Foley catheter in.
Through the night he was pretty good, just waking at 4am for some morphine (I'd only given him panadol at bedtime) but this morning it looked a bit yellow around the skin so I hoped there was no infection.
Suddenly around 10am it started leaking around the catheter again. He has now gone for a sleep with the skin no longer looking infected and no temperature. The homecare nurse has phoned for an update so we'll wait and see what they decide next.
It's a shame to have gone from such a happy little eating boy to this rather sick child and is perhaps worth other families knowing before they rush to take out their child's PEG or button.

Monday, December 7, 2009

Lily's dancing on TV news

We watched the full hour of the news yesterday (in fact we recorded it all) in the vain hope of seeing Special Olympics covered. However in the last 3 minutes they did cover Georgia, the teacher for the High School Musical dance group that Lily is in and showed them dancing. I thought it had a bit of a patronising tone very different to that of Special Olympics itself - see what you think the link to the video is here.

Isaac is still in a bad way. When he is in pain he holds out his hand to sign 'stop' which is very sad for us as we can't stop the stomach acid leaking out his side (from the fistula left where his mic-key button used to be). I spoke to a friend who's son had the same issue and she said he had become very unwell before he had surgery to close the fistula. She suggested getting a colostomy bag to protect the skin and collect the stomach contents.

Isaac couldn't go to Kindy today but instead his teacher aide came and played with him here and bathed and fed him. He is eating really well, even eating banana and drinking watered down custard. He has still lost 300g in weight on our scales though. I presume because of so much leaking out and the pain he's in. Tomorrow I will phone the home care team and ask if this is really what they expect in a child who's gastrostomy will close spontaneously and ask if I can email his surgeon at Starship hospital.

Paul has just left for Auckland (without me as we don't think Hannah can be left to cope with Isaac at the moment) I have decided to treat this unexpected time at home as a time to sort and tidy the house ready for the Down syndrome BBQ we have here next Sunday. Unless that is I can persuade anyone to operate on Isaac before then.

Friday, December 4, 2009

Lily wins GOLD

Noah's school let him have this afternoon off so he could come and watch Lily swim her finals at Special Olympics. This means we all saw her win gold - Paul was there as first aider, Hannah as a timekeeper and Noah, Isaac and I as spectators.
Paul has made a video of her race and medal ceremony.

Noah told me after school that it would soon be the "clothes, shower, mouldy" - this is an approximation to what he was saying with me trying to make sense of the words as his speech is sometimes not great. He got quite frustrated with my questions like "Is it on TV? Is it a person? Is it a shower of water?" He told me it was 'close' like a door not 'clothes' you wear but we didn't get much further until I remembered he'd shown his pass for special Olympics at news time at school and realised he meant "closing ceremony"! Ceremony is obviously not a word in his lexicon so he replaced it with words he did know!

Our local newspaper had a wonderful editorial about special Olympics yesterday. The full text is here but these are the opening paragraphs..

"The arrival of the 2009 Special Olympics National Summer Games to Manawatu is a chance for us to embrace the true essence of sport and celebrate the achievements of hundreds of athletes who have had to overcome more than most in their pursuit of success.

We all have our physical limitations, yet only very few of us have the courage and strength of character to push those limits and break through into new realms of our own potential. In the coming days, more than 1000 athletes competing in the games will push themselves to their limits, confound all those people who only ever told them what they wouldn't be able to do, and strive for glory. "

Isaac is still having a lot of trouble with his gastrostomy stoma, I was a bit over optimistic yesterday that it was closing. We've read some stuff on the Internet and because he's had it for over 8 months it means he has about a 60% chance of it closing within a month. As I'm not happy for Hannah to be looking after a boy who needs morphine for the pain and constant baths to clean up the leakage, it looks like I won't get to Auckland with Paul next week after all

Thursday, December 3, 2009

Special Olympics starts

Lily in her Special Olympics uniform just about to leave for the athletes village (Massey University) where she'll be staying until Sunday.

Paul and Hannah in their volunteer uniforms.

The opening ceremony for the Special Olympics National games was wonderful.

The mayor said of all the events he'd attended in the arena, none had been so moving as watching the athletics parade in.
Lily performed fantastically well as did all the dancers in the group. We were in the front of the seats for Manawatu supporters and had a great view. Paul videoed it on his cell phone so I'll get him to post it here later.
TV one news were filming it all and are putting on a special on Sunday night after the main news.
Today our two keen volunteers left bright and early for the pool, Hannah as timekeeper and Paul to sort out his field hospital as first-aider!

Isaac button removal (cont) - nasty photos

Yesterday I was at home with Isaac worrying about the skin round his gastrostomy site and the intermittent pain he was having.
I phoned the homecare team around lunch time and they said the paediatrician could squeeze us in and see us at 4pm. I cannot praise the paediatric department enough here, they have gone out of their way for us.
I picked up Noah from school in the pouring rain and told his teacher that we were taking Isaac to hospital and not sure if he'd stay in or not, just in case we had trouble with getting Noah to school next day as everyone we know who might babysit Noah is involved in Special Olympics.

We packed a bag for Isaac and me just in case we were kept in. I suddenly realised how long it is since we've done a hospital stay when I dug out the bag, discovered that Isaac is now in a bigger size of nappy than those packed in the bag and that the chocolate bar in it was time expired! I packed my china mug with some Nescafe coffee and vanilla tea (this tiny luxury always makes me feel so much better than drinking poor quality tea and coffee out of the disposable cups in the parents kitchen!) and a puzzle book and novel for me (you can tell we have spent a lot of time waiting around hospitals when these are the essentials of packing!)

We then got a taxi to the hospital. Noah got in and started peeling off the sticker with prices on and the taxi driver said "Can you tell him to stop doing that?" so I wondered what kind of ride we were in for. I got out of the taxi, put the child lock on Noah's door then got back in and off we went with me hoping that Isaac's stomach contents wouldn't leak all over the taxi!

I fed Isaac some custard once we got to children's clinic and it oozed all through his dressing and over my clothes - still as the doctor said "At least it smells nice!"

The nurses had talked to the stoma nurse - who actually remembered us from when Noah had his colostomy as a baby and asked them "Does Isaac have a brother called Noah?" She recommended putting Mylanta (indigestion mixture) onto the skin to neutralise the stomach acid and using the thick EPC cream.
One of the home care nurses recommended putting a sanitary pad or disposable nappy over the gastrostomy to suck up the fluid and keep the skin as dry as possible.

The paediatrician gave us a prescription for Losec so the stomach contents wouldn't be so acid and morphine for the pain and to help Isaac sleep through the night. He had spoken to the paediatric surgeon in Wellington who said that gastostomies almost always close themselves within one to two weeks and if the worst came to the worst, Isaac could have a few days of nasogastric tube sucking out his stomach contents while he was kept hydrated by IV fluids (This is not something you really want to do with a child who has just learnt to eat and has any kind of oral aversion though!) He said surgery is not as simple as just putting in a stitch because the whole gastostomy channel needs to be removed to prevent a fistula developing.

The pharmacist kindly made up some liquid Losec for us in the last half hour the pharmacy was open and then we raced home picking up takeaways on the way and got home soon after 6 o'clock needing to leave at half past for the special Olympics opening ceremony.

We gave Issac all his drugs and put a disposable nappy on his site, then sat there watching the ceremony as the smell of strawberry milkshake escaping from the gastomsomy grew gradually stronger and I grew stickier as it leaked slightly.
Once we got home at 10pm Isaac ate a pot of calciyum and drank (a first for him must be because he was loosing so much fluid through the hole) about 100ml of my concocted mixture of custard and milk mixed to a just liquid consistency. We gave him a bath, put on the magic cream and two disposable nappies - one in the usual place, one by his gastrostomy and he slept the night through.
This morning he looked rather pale and was still in a bit of pain so I gave him some more morphine. After breakfast I bathed him and realised the site is looking better and hardly leaking!!!
He's now having a sleep without any dressing on the site and I think we may be getting there - oh I hope so!!

These are very graphic photos so I apologise but they may be helpful to someone in a similar situation.
This is the site about two hours after the button removal - I had just given Isaac a bath.

This is the site today 48 hours later - you can see the hole is much smaller and the skin is beginning to heal (the redness around is because Isaac has very sensitive skin and has reacted to the tegaderm they used to hold the initial dressing)

Wednesday, December 2, 2009

Isaac's button is OUT!

Yesterday's paediatric clinic visit went very well, with Isaac putting on a great show of being a cheeky happy child and demonstrating how quickly he can eat calciyum and chocolate weetbix. This meant that in spite of him having lost a little weight since the home care nurse visited just over a week ago, the paediatrician said his button could come out.
Isaac's demonstration of happiness soon ended as he was first given his 4 year vaccinations and then had his button removed. I had not thought out the logistics of having a boy leaking smelly chocolate weetbix out of a hole in his side and made a very quick visit to the cafe for a takeaway coffee hoping we wouldn't have a pushchair full of mush by the time we got to the car.

Often the hole closes almost immediately, but this has not been the case for Isaac unfortunately. His already sore skin around the site is so sensitive to stomach acid and within a few hours Isaac was screaming with pain, taking small amounts of food which seemed to be coming straight out through the gastrostomy hole. At the same time Noah was attempting to disconnect the Christmas tree lights and I was going through Lily's packing list for the Special Olympics Nationals. Then the phone rang and it was a social worker asking if we'd like to foster a 2 year old and 1 year old with developmental delays! I said "Well not tonight as we may have to take Isaac into hospital."

Isaac has been awake a lot of the night and this morning is still leaking a little through his site but it has eased considerably. Positives are he has learned to take panadol orally and even to drink a little water. Also being awake a lot of the night diminished my wish to have three little children needing total care around the house, as we don't have a triple pushchair we would be more or less house bound and as Paul said "Even if we could manage it, we couldn't easily continue our usual life." I did manage three littlies at once (and had a triple pushchair) when we fostered twenty years ago but I was twenty years younger then and didn't have a Noah with behaviour issues.
So I've phoned the social worker to say 'No" which is a big step to me and a little sad.
Noah by the tree before he pulled all the lights off!

Hannah with her new car "Horton" which I posted about the other day