Thursday, October 30, 2008

Near normal frustrations

Beth has gone back to Auckland but still needs some time to recuperate fully. It hardly seems she was here for a week - it certainly wasn't a restful time! The kids are back at school after labour weekend and I'm finally getting a little time to myself in the day.

Isaac is not quite back to full strength although his cheeky character seems to be here in full force - you can see it in this photo Noah asked me to take of the two of them in the bath.

Today is a beautiful day and I hope it helps me calm down from my rather grumpy morning. Paul is away in New Plymouth and Isaac was awake crying from 4am till almost 5am then J was up at 6.15 I could hear J and Lily arguing over a drink of Milo while I was still needing my first cup of coffee. They seem to argue quite a bit at the moment some due to Lily's lack of hearing I think and some because J is still a bit disturbed from our recent upheavals and knows that she and mum meet with a psychologist this week and her future will depend on his report.

By 8am they were both trying to tidy the lounge and I was becoming irritated as they were rearranging things to places I don't like. So I said to Lily what would really help would be tumble drying the washing. Forgetting once again that incidental learning doesn't happen for Lily I didn't check what she thought I meant. When I heard the washing machine going I found she was rewashing the already washed load plus adding extra dirty clothes so the washing machine is over full. It seems I had never taught her the names of the two machines and she thought anything that went round must be a tumble drier!
I hope I can stay calm and patient for her IEP at school this afternoon. Lily told me they'd asked her to write her 5 year plan and in all seriousness she plans to be living in Hollywood making movies. I said its really hard for people to get a green card to live in America and she said "I don't want to live in America I want to live in Hollywood"

Sunday, October 26, 2008

blissfully boring family weekend

Everyone has recovered and is slobbing around the house - it's great!

Yesterday the girls met up in Hannah's lunch hour from Max and had lunch together - we are quite a force to be reckoned with - me, Abi, Anika, Beth, Hannah and Lily. I had set myself a resolution to only shop in supermarkets for the month of November as a way of saving money towards the new house. However as I ended up in town with the girls this was a resolution soon broken. Paul has pointed out that it's not November yet, but the saving money bit should still hold.
One way we will save money is by not getting the home theatre system we have been quoted $7000 to $15000 for. This came about because I would like to be able to listen to music in the laundry while I'm ironing and Diamond Homes suggested we contact "Image Audio" about having speakers in the ceiling etc. They do some great stuff - way above our level of understanding about woofers and tweets and so on. We would need five speakers in our living room ceiling as Dolby sound has 6 channels, then we'd need a major space to put a box about half a metre cubed containing our DVD player, CD player, sky decoder, any games systems, an amplifier and wires to link the computer to the TV. This would of course be a dream amount of wires to Noah (and nightmare to us!) We would also need to put the TV in a different place to where we'd planned.
It would mean that watching TV would be like being in a cinema - but we actually want the living area to be for living not for sitting with your back to the lovely big patio doors blocking access to the kitchen and playroom. We have decided it would be cheaper for me to have an I-Pod in the laundry!

Today Sam, Anika and Abi came for lunch (Joe had a meeting at church) then they all pulled out of visiting Tokamaro Steam museum (we almost stopped Noah going too after he flushed J's koosh ball down the toilet!) Isaac stayed home with Beth and Lily so it was just Paul and I, Noah and J who went to this most NZ of museums. A muddy field full of well loved machines and a steam train that pulled a carriage round a short course. (you could see the ground through rusted holes on the floor) We loved it though were rather embarrassed that they only took cash and by emptying our pockets completely we could only come up with $38.60 of the $40 we needed. The little lady was rather cross but eventually let us in!

Noah found the whistle of the steam train a bit loud!

Friday, October 24, 2008

more hospital stuff

We are hanging out for a blissfully boring weekend, but today had an ENT appointment for Lily - and came home to four separate hospital envelopes addressed to Isaac but luckily three contained the same appointment and the other was for 10 days later with the same doctor but for child development rather than general paediatric so hopefully we won't need that!

Anyway we got to the hospital early as Beth was feeling well enough to care for Noah (who had a teacher only day) and Isaac. Lily and I had breakfast at a lovely cafe called "Not now James" where Lily proved she was fulled recovered from the bug by eating an enormous cooked breakfast.

We waited an hour at the clinic to see the specialist (who we'd previously seen privately) and when I said Lily thought the hearing in her right ear was getting worse he sent her immediately round to audiology. Tests there showed about a 40 decibel loss in her left ear (a bit better than the last test) and around a 70 decibel loss in her right ear (worse than the last test). He sent off a booking form for a CT scan of her ears as we expected but also said that now she has an asymmetrical nerve hearing loss it's possible she has an acoustic neuroma (about 5% have this benign tumour of the nerve which can eventually press on the brain) so should also have an MRI scan.

I said two of her brothers had had an MRI scan of their brains and he asked me what for, so I was explaining how Noah had infantile spams and Sam had vision loss found to be due to Drusen of the optic nerve. Then I remembered that as Lily was adopted and Sam and Noah are not biologically related to her this was of no relevance at all. Still I think it must be unusual for 3 siblings to have needed MRIs. Paul has also reminded me that Isaac had a CT scan of his brain aged 4 months when we were in for his open heart surgery.

For some light relief Noah and I went to see the movie Wall-e this afternoon which he loved. At the moment its just Paul, me and the little boys here. Lily and Hannah are having a fish and chip supper for the Down syndrome teenage group and Beth has gone out to the movies with Sam and Anika and Joe and Abi. It is so fantastic to have some quiet time and we're hoping it will last for the next 3 days (Monday is a holiday in NZ)

Thursday, October 23, 2008

House progress

Poor Beth got sick last night - not nice to have a vomiting bug when your stomach hurts post-surgery anyway. Luckily it seems to only last about 24 hours (and less in kids!) so Beth has manged to crawl from bed and have a shower now and Paul went into work for half a day.

Before Paul got sick yesterday we looked round the house to decide wiring. It's amazing how quickly everything is progressing. Then at lunch time today we went to see the kitchen manufacturers. Although they're not used to doing classic English style kitchens (NZ seems to just have sleek coloured laminates) they seem to understand what we're after.
These are some photos of the house - I didn't get any of upstairs - I was so proud of myself for climbing the ladder to upstairs I didn't think to take photos and was gripping too tight to the wooden rails!

tried to get a picture of Paul standing by the new linea boards at the front but he moved!this is the dining room right front of the house with the meter box (which will be on the outside wall not seen inside obviously)this is the right hand wall of the kitchen (looking from the front of the house) - the aga will be between the two windowsthis is the view from the kitchen looking left into the living area with the big patio doors and then into the playroom

Wednesday, October 22, 2008

hospital in the home

In my hospital in the home today I have had two post-op patients (the youngest with diarrhoea) and three with a vomiting bug. I have done six loads of washing!

This was supposed to be the first of the calm boring days to follow our busy few weeks.

Beth's surgery (laparoscopy) yesterday went well and they discovered she doesn't have endometrious which is good news but doesn't explain the severe pains she gets. I offered to take lots of photos of her progress like I did with Isaac but she declined! Southern Cross hospital was very nice, more like a luxury hotel than a hospital especially compared to Starship 24b. We may change our minds about which we prefer when the bill comes!

We (Beth Isaac and I) got in at 7am and Isaac became unsettled almost immediately - I guess he'd been pleased to be home and going back to an unfamiliar place with nurses was hard. At one point I was asked to take a crying Isaac out of the ward to a playroom as "people were trying to sleep" He did sleep a bit but that was while Beth was away in theatre so her recovery was mostly accompanied by his crying.

She'd arrived back from theatre by lunch time and I suddenly realised that I had no food so asked Paul to pop in with food from the public hospital canteen. Afterwards I thought maybe the lamb wrap had gone off as I felt a bit queasy, but when we were waken in the night by J vomiting on our bedroom floor (narrowly missing Paul's shoes) I wondered if maybe it was a bug.

When Lily phoned from work to say she'd been sick and then Hannah texted from across the road that she was ill and then Paul came home from work early this afternoon as he felt so ill we became sure it was a bug. It seems to be short lived though so I hope we'll all be well tomorrow. Poor Beth has had to walk around clutching her stomach trying to help other people.

Sunday, October 19, 2008

house progress

On the way home we drove past our 'being built' house.

The roof is on, the windows are in and lots of the wooden battens are on the walls ready to take the linea board.

In Auckland I found a great brass lion door knocker to go on our new red front door (and it will be a good momento of Isaac's surgery)

We're home!

Delighted to be home. It was amazing how Isaac looked around recognised where he was and slowly smiled. We haven't seen many smiles over the past few days.
Isaac stopped his morphine infusion this morning and went onto full feeds (as he is being fed nearly continuously day and night for the next 4 weeks this is only 40mls/hour). He slept very peacefully (finally) and I could no longer smell anaesthetic gas on him.

Just before lunch his drip was removed completely. He was dosed up with panadol ready for our taxi at 2pm. Isaac and I got in then directed the taxi down to Ronald McDonald House to pick up Paul and Noah. I was surprised they weren't ready and waiting but Paul was coaxing Noah off the top of the play structure (not the bit you're meant to play in - on top of the top tunnel)

Minor drama at the airport when I took Isaac out of his pushchair to check it in and his whole gastrostomy button came out. Luckily I keep a 5ml syringe in my handbag and we were able to deflate the balloon and reinsert the button. I did spend some time on the plane thinking about what would have happened if I didn't have a syringe with me - would we have been the quickest ever return to Starship?
I'll upload these photos of Isaac's hospital stay then I'm off to bed. Isaac is fast asleep with a rather bruised tummy.
photo journal shows
arriving at Auckland airport on Tues - see how much we need just for a short stay where everything is provided for us!!

Isaac pre-op in some rather fetching hospital pyjamas - his expression looks a little wary

Isaac having just arrived on the high dependency unit from the recovery room after 3 hours of surgery. He refused to lie down just sat up in a rather drunk and wobbly way until he keeled over. He also kept moving the oxygen cannulas out of nose and his sats would slowly drop until we had to replace them

Off the oxygen, but feeling miserable and still insisting on sitting up - his skin is very sensitive and had reacted where they'd taped his eyes shut during surgery - his nose is so bad from scratching it trying to pull off the oxygen cannula

Saturday morning, feeling a little happier but having been awake and sitting up since 4am.

On the plane home today - absolutely exhausted and sleeping peacefully (a much better flight than on the way there and I certainly had the best companion - Paul was by Noah who kept shouting "I love this" as we were on the runway and "Holey Moley" when we took off)

Saturday, October 18, 2008

Isaac doing well

Hospital is really boring. I spent all morning sitting on a hard chair by Isaac's cot while he slept. Didn't dare go too far away in case he woke up. Fortunately he is doing well. He is still on some iv morphine but it is being reduced slowly and will hopefully stop later today. He has also started on some feed again. We are back to giving continuous food via the Mic-key button. If all goes well we could be home tomorrow.

Friday, October 17, 2008

Isaac back on the ward

Surgery went well. Took about two and a half hours. After surgery Isaac was very wriggly. He looked very tired but would not go to sleep even after an extra dose of morphine. Fortunately everything could be done laparoscopically so he will probbly be able to go home on Sunday if all goes well.

Isaac Going for surgery

Isaac is going for his surgery at 8.45 this morning. He seemed in good shape and rather unconcerned, unlike his mother. The operation will take 2 to 3 hours. Noah much better today. Well enough to continue exploration of Ronald McDonald House. It is always good to visit a building with Noah, you see parts you wouldn't otherwise see. Ronald McDonald House has lots of corridors, a slow lift (spent some time in it), and an interesting basement and garage.

Will keep you posted about Isaac's progress

Thursday, October 16, 2008

Night of little sleep

All our plans for today came to nothing as Noah was unwell. He vomited over all his bedding and we had to wake up the Ronald McDonald night staff at 2.45 am to get some new sheets. Add to this the fact that Isaac still didn't consider he should sleep as he wasn't in his own bed and that our bed is much smaller and softer than we're used to and that there is the typical hotel heat here and you'll realise that Paul and I had a very broken night.

By lunch time Noah was feeling much better and we hope whatever he had wasn't contagious so that Isaac gets his surgery tomorrow. The surgeon phoned and asked us to be on the ward at 7.30 am with nothing to eat or drink from 3am (but as Isaac doesn't eat anyway we shouldn't have any problems with that)

It is amazing how tiring it is doing nothing in a hospital setting. Paul and I both wish we could be tucked up in bed like the boys and it's only 7.30!

We bumped into someone we know in Ronald McDonald house, her little boy with DS had a tracheostomy done soon after birth. He was due to have it removed a month or so ago and they drove all the way up from Wellington only to find that his intensive care bed had been taken for a child who'd been battered by her family so he couldn't have the surgery. This time though it all went ahead and he's doing well.

My mum's cataract surgery yesterday also went well.

I phoned Lily at home and got no reply so I phoned her mobile and she told me I got no reply at home because she was in Sam's car. She locked herself out this morning (she thought her bag with key and mobile phone in were on the doorstep but they were actually still in the hallway) and Hannah had already gone to uni so Lily sensibly went on to school. When school had finished they looked up Sam's mobile number - he was the emergency contact we'd put on her school forms - and he kindly picked her up and took her to his house for tea and will let her back in using his key.

Wednesday, October 15, 2008

Auckland at night

I'm sitting on a very comfortable leather settee looking out of massive sliding glass doors over the trees of the domain to the beautifully lit up skyline of Auckland at night. These must be million dollar views yet because we're in Ronald McDonald house we're not paying anything.

We even got a lovely cooked tea for free, when members of the ASB bank came and cooked an enormous barbecue followed by yummy cheesecake from the cheesecake factory shop. Noah has been in the Ronald McDonald house school and taken part in "stretch and grow" movement class and tomorrow we should get a free trip to Auckland zoo.

All of this makes us feel a bit of a fraud as we are basically now here on holiday while we wait for Friday morning surgery for Isaac.

Both boys are pretty overexcited and out of routine but we have finally (been trying since 11am for Isaac) got them to sleep.

Paul managed to do a bit of work on his hospital computer - thus justifying it being here with us - not just for my blogging and I caught the bus to Newmarket for an hours shopping. Tomorrow morning we plan to put Noah in the school again then visit Middle Earth tiles and Freedom furniture to get some ideas for the new house.

Surgery Delayed

Isaac's surgery has been delayed until Friday. More urgent cases bumped him off the list. We now have a short holiday in Auckland at Ronald McDonald house. Fortunately there is a school for Noah to keep him occupied. Only lost him twice so far.

Tuesday, October 14, 2008

Ronald McDonald House

We have arrived at Starship. Noah really enjoyed the flight and added (I hope) to the enjoyment of the jaded businessmen round about him. He was also delighted at the end of the flight when I asked him to kneel down and retrieve the toy Isaac had posted down the side of the seat. He got the toy alright and then I heard him excitedly say "LIFE JACKETS" I managed to stop him just before he'd pulled the tag on them!

We had lunch at the international terminal of Auckland airport and watched a jumbo take off. The taxi driver to Starship then thought we had flown in from abroad to have surgery.
We got to ward 24b and the playroom teacher remembered us from 2 years ago and then added that she'd seen us on TV on the attitude programme.
As Isaac is 3 he is up the other end of the ward than the baby end where he was before. This means they wanted to put him in a bed - but we said he'd fall out for sure. So they found him a big metal cot and he soon discovered if he banged his head against the bars it made a great sound. He was seen by the house surgeon, nurses and consultant surgeon but it appears that his x-rays are still in Palmerston and no-one here had seen them and that no official letter has come from the Palmerston paediatrician. Because of this Isaac is on thel ist for tomorrow afternoon with his x-rays being couriered here overnight.

For tonight we are all together in Ronald McDonald house. It's a lovely place although Noah has already got lost once and been found in the garages. Both the boys are asleep now and we're sitting in the dining room with Beth who's visiting us

Sunday, October 12, 2008

Isaac's 3rd birthday

We started Isaac's birthday with a special birthday breakfast which Isaac of course couldn't eat. I let J use the camera and she took this lovely shot of Isaac and then without even realising it - she came over to talk to me as I was cooking and just nudged the camera - this rather nice shot of the bacon cooking. We had bacon, pancakes and maple syrup as you can see on the next photo of Isaac opening his presents.

Hannah came over and had breakfast with us too.
We bought Isaac a car with the money from relatives. It's just the right size for him to sit on and will go well in the playroom of our new house which will have splashes of red and a slightly retro look. Isaac is trying to sign car, copying J in the second shot.

In the afternoon, Joe and Abi and Sam and Anika came for afternoon tea. Life has been so hectic that Isaac only had a shop bought cake for his birthday cake. He didn't seem to mind and I have promised him that if he learns to eat after his operation then next year I will make him a fantastic cake!

Computer back

We have the computer back - although not as we would wish because it managed to loose 83 photos of our holiday and J's birthday party which it had deleted from our camera. Luckily a few of them are on our other computer (the broken lap top which doesn't accept any typing from the key board and whose CD drive doesn't work!) so we may be able to get hold of some of them sometime! It also doesn't pick up everything I type through the wireless keyboard.

We had a lovely time in Oz. If you were looking for the best place on earth to live - which I guess Jon and Bev were doing really when they moved back to Australia - then their house would be a contender. They are within walking distance of 7 mile beach, a lovely white sand surf beach that is as expected 7 miles long, in a lovely green area of NSW and only 2 hours from Sydney airport. Their house and guest flat is lovely like a luxury boutique hotel and they have great views and a 5 acre garden. Nearby is the gift shop area of Berry - Lily told her work supervisor she'd been to a place called "Strawberry" in Australia!

We went on 2 rain forest walks one of which was up in the tree tops and incredible scary. Jon made it to the first stopping point but was so covered in sweat he then returned (he has a fear of heights) I did a little better but didn't make it to the lookout tower - Noah, Bev, Paul and Lily climbed to the top!

While Paul and I enjoyed the luxury surroundings and Lily spent hours in the pool (we had beautiful weather and two days with temperatures of 33) Noah was more impressed with the two dogs, Archie and Bilbo (he was thrilled when the church holiday programme this week included a puppet called Archie) I stopped him just as he was about to copy the dogs and drink out of their bowl!

The children go back to school tomorrow and I was planning for a calm, boring week to make up for the excitement of the holidays and for J spending so much time away from us. However this is now not to be as we (Paul, Noah Isaac and I) fly to Auckland on Tuesday for Isaac to have surgery for his hiatus hernia on Weds and then to spend an expected (guessed by a surgeon so possibly optimistic) 5 to 7 days in hospital.

Paul will have to return on Sunday as the week after there is a haematology conference in Perth and the rest of his department will be there. Things are also complicated by the fact that Beth is flying to Palmerston on Saturday to have her surgery on the Tuesday. I'm so hoping that I get back in time for that.

We have done a lot of juggling to sort next week out for Lily and its great for her having brothers and sisters willing to help. Yesterday night she practiced what it would be like to put herself to bed and lock up the house and she couldn't find the light switch for the kitchen lights ( a lovely example of how incidental learning doesn't occur in DS) I don't think she will spend any time alone but just thinking about it has been a good learning experience for her when we consider how often she's told us she's ready to go flatting alone!

Paul is going to be able to take his work lap top and wireless internet access to the hospital so we will be able to blog about Isaac's progress on the operation day and that will be the easiest way to keep up to date. My mum is also having surgery that day when she has her cataracts removed.

Thursday, October 9, 2008

long time no post, Isaac's surgery date

Computer is in Harvey Norman where we took it just before our holiday ("Should easily be mended within a week and they do it in Palmerston North") still not repaired ("Actually it had to go to Auckland and I think the part has to come over from Australia") and I am going mad without access to a computer - this is Paul's work computer borrowed for an evening.

So will fully update and add photos when computer is back. Meanwhile we had a great holiday with Jon and Bev and have had lots of talk since about Archie and Bilbo (the two dogs) from Noah. Temperature was 33 on two days - we came back here to rain and temperature of 16.
J's birthday party went well - It was the most structured party ever - with J very wound up after her week in respite care.

Just heard today that Isaac can have surgery in Starship hospital, Auckland next Weds so have to go up there on Tues. Much juggling of timetable means we should just about be able to achieve this.