Thursday, December 31, 2009
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
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
- 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
Monday, December 21, 2009
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!!
Sunday, December 20, 2009
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
Friday, December 18, 2009
Wednesday, December 16, 2009
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
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
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
Thursday, December 10, 2009
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
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
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
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
The opening ceremony for the Special Olympics National games was wonderful.
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
Hannah with her new car "Horton" which I posted about the other day
Friday, November 27, 2009
By lunch time my entire preparations were taking the chicken out of the freezer, but come 6 pm we had roast chicken, roast potatoes coated with roasted couscous (I won't do that again but what's a celebration without an experiment!) mushrooms with bacon and onion stuffing, broccoli and broad beans.
I had to make a pumpkin pie really fast and unlike the USA they don't sell tins of pumpkin pie filling here in NZ.
So I bought two little butternut pumpkins, and microwaved them whole for about 8 minutes. This made them soft enough to cut out the flesh, then I microwaved the flesh for about 5 minutes and zapped it in my food processor.
I smashed the canister that holds my mixed spice as I went to add it and ended up putting much more mixed spice in then planned.
I added some lemon juice and zest from a lemon straight from our garden, a slurp of cointreau and two tins of condensed milk. I didn't bother with a pastry or biscuit crumb base as I didn't have time, just tipped the lot into a flan tin and baked it for about 40 minutes. It was lovely!!
We lit candles to give thanks for the birth parents of our adopted children - Lily, Rachel and Isaac and then took turns to say what we were thankful for this year.
Lily chose her 21st birthday and visit to Disneyland, Noah also chose Disneyland. Isaac chose (well I chose for him) learning to eat, Hannah chose buying her new car and Paul and I chose all the above plus the new house, our 30th wedding anniversary and Paul getting his company INRonline into the finals of the NZ trade and enterprise competition.
Friday, November 20, 2009
We are still here.
Hannah has bought a car which Noah has named Horton so Paul has to take her for a drive most nights so that she can take her test soon. She has also finished uni and is working some days in a jewellery shop, silver moon. which has the strange catch phrase 'never go naked'
Lily is avidly watching the new Harry Potter DVD and then acting it out with the dolls house. She is getting ready for the Special Olympics Nationals which start on Dec 2nd. Hannah is going to be a timekeeper (having passed the training last Sunday where she had to record times within 0.8 sec of the official timekeepers) Paul is going to be a first aider and timekeeper - much to the disgust of the medical organiser who thinks he can only do the one job as there'll be 300 athletes in the pool and only 2 first aiders. I think Paul is secretly hoping he gets leukaemia to manage rather than broken bones or seizures!
Isaac was officially weighed today by a home care nurse. He is 12kg clothed (he is still 11.3kg naked unofficially on our home scales) He is still having a lot of trouble with the skin round his button so we now have an appointment with the paediatrician on Dec 1st to discuss taking the button out!
He has had no nutrini through his button since Oct 24th and only about 500ml of water since Nov 1st, but as he still isn't drinking it would be a little scary to remove it.
I took him to McDonalds today to try a thick shake and he managed to drink a little so I think a lot of McDonalds visits are in order, Noah will be very pleased!
I am trying to do an MBA by reading a few business books while feeding Isaac so that I can support Paul in his trade and enterprise venture with INRonline. Paul has to go to Auckland for 2 days in December to learn about the American market and pitch to the NZ ministry of health.
He though I could go too as his business partner, so I started with the most important thing and went shopping for some business woman clothes. I got some good deals at the second hand shop (although the 80s shoulder pads on one jacket are a bit overwhelming) and I found two nice tops at half price in Farmers.
Anyway they've now said they only want Paul there although they may let me attend a few seminars. As we'd already arranged babysitting with Hannah though we've decided I might as well go anyway and just enjoy staying in the Heritage hotel and being there for Paul to tell me how he gets on.
Tuesday, November 10, 2009
On Friday Isaac had his pre-op assessment for his grommet operation, this should mean his surgery would be within the next week or two. But on the Monday of that week at his opthalmology appointment they decided to operate on his squint again which is a more major operation than the grommets, so we are on that waiting list which may be 6 months and they will try to do grommets then as well. Monday was Lily's ENT which shows a moderate hearing loss in the left ear and a mild loss in the right ear. Her hearing aides correct these.
Today was Isaac's dietician appointment. She started by saying she just wanted to review all her children before Christmas and assumed nothing much had changed - so much for a multi-disciplinary feeding team sharing information!
So she found out that everything had changed as Isaac was now eating and had last had nutrini through his tube on Oct 24th and water on Oct 31st. It is somehow surreal to have a nutritionist nodding away happily when you say you are giving your child nutella and cream and golden syrup. She even had a few more suggestions like using "super milk" made by adding milk powder to milk and peanut butter (after a trial of a bit on the lip to check for allergy) and mixing yogurt with jelly to make a good texture. We've also been given the go-ahead to give him McDonalds milk shakes as they're thick and easy to drink and have high fat content.
But the post is supposed to be about the good and bad medical stuff.
The bad is that unfortunately my mum is feeling very tired and ill. She had an ECG and the doctor thought it was angina. Mum and dad have decided to cancel their trip to Oz and NZ which was due to start in 3 weeks time. We are all very sad about this. The sibling get together will still happen at my brother's in NSW but it won't be the same without mum and dad there. We are even more pleased now though that we've booked to go to UK next May to see My and Paul's parents.
The good medical stuff is that Paul's INR online business has made it to the finals of the NZ trade and enterprise competition for medical ideas to introduce to the USA. He is very excited and it looks like I may have to put on my businesswoman's hat and increase the number of staff by 50%!
Thursday, November 5, 2009
He still won't drink apart from sips of bathwater but will eat calciyums (a children's dairy dessert that turns to liquid if you stir it) so gets 150ml of fluid from that at each meal. I have found some fluid thickener so can gel flavoured milk or fruit juice for him to eat but he is not very keen on this.
He loves cheesy ball snacks (like wotsits in the UK) and they are up there with nutella with over 2000 kj per 100g! He also likes us to feed him bowls of weetbix mixed with nutella and cream or avocado and banana mashed with cream and a little golden syrup. He is eating about twice as much now as he did when he started and often signs 'food' to us.
We see the dietitian on Tuesday so hopefully can find out the best way to get in adequate calories and fluid.
He has finally stopped throwing food quite so much and if we're lucky will sign finished before he violently pushes away the dish. Although the floor is no longer so messy we are getting through seven or eight bibs a day that are very mucky!
We weigh Isaac by weighing ourselves first then us holding Isaac on our bathroom scales. This is probably not the most accurate measurement but he seems to have stayed at 11.3kg over the past few days. This is a big drop from the 13.2kg which he started from on our scales. However he is only 84cm tall so is still a reasonable weight for height.
This may be more information than you wanted but he has managed to produce a normal brown poo, rather than the horrible black liquid liquorice type stuff he produced on nutrini. He didn't even need lactulose and much to my amazement poohed in the toilet where I sat him to wait while I ran his bath.
Isaac's little friend Annika is now back from the Graz clinic in Austria MINUS her button! I am longing to catch up with her family and let Isaac and Annika have a ply picnic together.
Sunday, November 1, 2009
Lily understands his disappointment. She has been so looking forward to the show her dance school puts on. It is on at the Regent (our local theatre) and stars all 300 or so of the kids who attend the dance school. Her class is doing a few songs from the musical 'Joseph' and Lily has practiced really hard (we hear the joseph dvd three or four times a day blaring from her room!). She can even sing all the colours of the coat in the right order. She brought home the details of the show and we realised it was on next weekend which is the weekend she has already agreed to go to Christchurch to train with ten other young people as a self-advocate\ambassador for the NZ Down syndrome association.
Lily spent the evening she found out in floods of tears, we were holding our home group in the room above her bedroom and could hear her sobs. The next day she was still crying as she had breakfast and in the end I had to say that she could only cry in the house and NOT while she was at work. That afternoon I asked if she had cried at work and she said "I was crying inside" I asked why the phone was in her bedroom and she said "I don't want to tell you as I know you'll be cross" This never bodes well!
Turns out she had phoned the dance school (I pity the poor receptionist who probably couldn't understand a word of the story) and said "There are two things I want to get off my chest" (This is typical drama queen Lily) She went on to say how she wanted to be in the performances but had to go to Christchurch. Then she suggested that they hold another performance of the whole show involving 300 people that she could be in!
Monday, October 26, 2009
We had our first BBQ of the season yesterday and discovered nothing worse than a cremated moth on the BBQ that has been unused for months (other years we discovered how decomposed food can get!!)
We invited a new family from church over, they have four young children - the eldest is 6. Their children were so enchanting, so interested in everything and played with all the toys in the playroom like they were meant to be played with. Their 6 year old daughter even arranged all the people and furniture in the dolls house so that a family was having tea.
It made us realise yet again how different our children with DS are. While these little children played, Noah spent his time colouring over the whole page of a colouring book with the colour purple (very carefully and taking a nice long time!) while humming tunelessly.
It is good to be reminded sometimes that it's not our parenting skills (or not JUST our parenting skills) that make it difficult to look after our trisomy tribe, but the problems that are part of DS in particular the lack of incidental learning and the rigidity of thinking.
The hospital has recently appointed a speech language therapist to help with feeding and she visited Isaac on Friday (I think she may have heard from the home care nurses that we have taken it upon ourselves to wean him). It was good to see him through her fresh eyes and she was obviously concerned about his teeth grinding and throwing everything, both of which are behaviours we've just learned to live with.
I set out a play picnic so she could watch him with food. I do mean to do this everyday but it is so messy and expensive that I hadn't done one for two weeks. I was very impressed with Isaac and I think she was too. He ate a bite of an after eight mint, two burger rings and fed himself from the bowl of baby rice and the bowl of pumpkin. He picked up one of the drinks but wouldn't drink it. He also fed his doll a little bit.
these were the positives, the negatives were flinging the doll across the floor into the middle of the picnic and deliberatly throwing foods including a messy pot of calciyum and all the spoons and drinks.
Unfortunately she had no real advice as to how to continue the weaning. I had put him back up to 350ml nutrini overnight and about 600ml water throughout the day, but really feel we should try to cut this down to encourage his eating and drinking.
On Sunday he ate so well that we gave him no nutrini overnight and today we're constantly pushing sips of water and food that's pretty liquid so I'm hoping we can just give around 400ml of water overnight. I've joined the tube fed kids webring and that has some tips for helping drinking.
I have also become a packet reader in the supermarket. I have discovered that weetbix has twice as many calories as baby rice and chocolate oreo cookies and white chocolate Tim Tams are packed with calories and not too tempting for me (unlike the mars sweets which I finished off after Isaac had tried one!)
Paul rented a rotavator (rotary hoe is the kiwi word for this but just seems odd to us) this morning to get our front garden ready for lawn and then this afternoon Paul and I took Noah to see the movie UP which Paul hadn't seen and loved. Our ex-daughter-in-law Abi was visiting Palmy for the holiday weekend and called in on Saturday to see us which was kind of her. We hadn't seen her since the marriage break up with Joe in December, so she hadn't seen our new house before.
My brother Jon from Australia phoned and it looks like he will have 17 of my family (including Paul and I) squeezed into his home on December 27th and 28th when mum and dad (from UK) will be visiting him along with my brother Nigel and his family (from UK) and my sister Caroline and her family (from Nelson). The last time we were together was for mum and dad's golden wedding three and a half years ago. Only my younger brother Stephen will be missing.
Thursday, October 22, 2009
Paul took some video of Isaac to try out the video bit of his new i-phone and has now played around with getting them on the computer so I hope they work.
The top one is on the day before his birthday when he wanted to eat but didn't fully know how. The one below wearing the green bib is a few days later as his eating is improving.
Tomorrow the speech language therapist is visiting and in two weeks time we have a dietician appointment, so we are getting back in the system again now that Isaac has made such progress.
Tuesday, October 20, 2009
It was from 6pm to 8pm so I walked into town and met Paul for a hurried tea at Subway at 5.35
We then raced back for homegroup held at our house staring at 7.30 (Hannah was going to let everyone in for us)
Lots of people are sick though so it was cancelled which means we can sit down to watch an English documentary called "Adopt me please" about finding homes for hard to place children.
Sunday, October 18, 2009
Today he just finished a small bowl of custard mixed with cream and then some mashed avocado and banana.
I spent an interesting time reading up calorie values of everything he might eat. His tube formula, Nutrini energy has 150 calories per ml, ordinary baby milk has just about 50. I decided to try making up baby rice with warm nutrini but it turned out rather grey looking and not very tempting to Isaac.
A dish of baby rice is 20 calories for the rice, 25 for the baby milk, 20 for golden syrup and 25 for cream. The dietician reccomended 1300 calories a day at our last visit and it is going to be very hard to get this number of calories into him with food alone.
We really want him to start drinking as then we can get in plenty of calories with baby milk and cream.
Last night for the first time we didn't feed him at all through his tube overnight, but have had to give him 200mls water through his tube after breakfast this morning as he looked so floppy. He picks up almost magically with a bit of fluid.
I keep offering him water through many different cups but he will only take a sip or two - I'm trying to avoid bribery but did end up only singing his favourite animal song to him if he took a sip. I've tried baby milk and chocolat emilkshake and ribena but they make much more mess and smell when Isaac throws them everywhere.
We will keep giving him fairly liquid food I think until he feels confident about swallowing thin liquids.
Saturday, October 17, 2009
Isaac is a child whose greatest food intake in 4 years had been (only once) to drink 100mls of milk through a Haberman teat and now he can eat a whole baby tin of pumpkin and sweetcorn (with a bit of coconut cream - thanks for the tip Bronwyn)
Tuesday, October 6, 2009
Thursday, October 1, 2009
We had to get up at 5.15 am and leave at 6am, which I was proud to manage. We had just got to the bit of the journey where you drive by the water front when a tsunami alert was called on National Radio! (Luckily this ended up just being a 40cm wave in Gisborne that did no damage)
The weather was very miserable so it was a grey harbour as only Wellington can do. We parked at Te Papa at about 8.50 and Paul raced across to Willis st while I went and waited at Te Papa entrance. I hadn't realised there was an inclusion conference on and bumped into two people that I knew in that typical NZ way!
The kind attendant told us that Te Papa didn't open till 10am so as the weather was by now pouring with rain, we spent an hour waiting in the Te Papa cafe which luckily has some fantastic big lego bricks. Noah built a lovely enclosure for Isaac to sit in!
We raced to get tickets for 'story place' which although it is intended for pre-schoolers was just right for Noah. He loved the bit where they pulled back the curtains to show a previously hidden play area and the children had to shout for the sun to come up (the attendant just pressing a button to turn the lights on!)
Afterwards we went to see the 'Big Baby' - this is a baby's face you can control with levers built by Peter Jackson's Weta workshop. Noah was fascinated by this and soon discovered you could look underneath, round the sides and through the back of the baby's head to see how it worked.
By 12.15 we were really getting to the limit of Noah's concentration so braved the rotten weather and found a food court then went up the cable cars. When Noah saw they started with a tunnel he decided he didn't want to get on, so I ended up physically lifting him on - while also hanging onto Isaac's mountain buggy and all the time speaking reassuringly about how you could even see daylight at the end of the tunnel. Of course once we'd started Noah loved the cable cars and was amazed at the continuously moving cable. We had a quick view of Wellington covered in cloud then watched an old movie of cable cars in the little museum.
Luckily by then Paul had finished his training meeting and met us for a cup of coffee and a slow trip back to Palmerston North.
As we arrived Noah asked if we could go straight to Mighty ten (Mitre 10 a DIY store) to buy some rods to make a 'giant baby' at home! This morning he has thought about it too and wants to cut up my silicone baking sheet - I'm not sure if this is for the baby's skin or part of the box but I've told him dad would be much more help than me so to talk to dad!
Tuesday, September 29, 2009
Friday, September 25, 2009
Isaac was wrapped up in three layers and nicely covered with his pushchair hood and apron, but I just wore one layer and a raincoat and set off on my 10km round walk to ABCD therapy group.
On the way back it rained continously with a really biting wind - the kind of weather in the UK where you think 'snow is coming'
I got so cold that I had to go into a supermarket to warm up. I looked to see if they sold gloves and as they didn't bought a pair of socks to wear on my hands!!
Anyway this morning it's proof of how cold it was as we can see snow on the hills all around us - we have never seen snow by the windmills before.
Paul is pleased to have got into the semi-finals of a business competition run by NZ trade and enterprise. He and Joe have developed an on-line programme for warfarin management which has now taken over warfarin management for the rural Gisborne area of NZ and is gradually getting more individual customers sign up to it.
He's been asked now to 'give a pitch' about INR online in Auckland so will stay with Sam and Beth overnight, do his pitch then fly to Gisborne for a 3 day clinic.
Tuesday, September 22, 2009
It is also very hard not to pressurise a child into eating when you know how little food they've had and we don't want to end up as totally obsessed stressed out parents. So we'll still let him play with food each mealtime (with little hope that he'll actually eat any of it) and maybe will still tube feed him the bulk of his food overnight in the hope that he'll feel a little hunger during the day.
He had some enjoyable days not being tied to a tube during the day at all and the optimism we had was wonderful while it lasted! We are more hopeful now that one day he will learn to eat.
Wednesday, September 16, 2009
But at the moment I am trying to come up with high calorie things that Isaac will try. We have decided to only tube feed him at night now and drop his volumes a bit to make him a little hungry during the day.Because he has never eaten orally its a big scary experience for him to have things in his mouth but today (just after Paul returned from a four day trip to the Philippines and was here to witness) he managed to swallow a few mouthfuls of my high calorie invention - nutella mixed with cream to a thick liquid consistency.
We had to appear as though there was nothing momentous about the occasion (the more fuss you make the more likely it is the child will use food refusal as a control battle) but were actually very excited! Perhaps we can dream that one day Isaac will decide how much food he needs for himself and eat it like any other child!
A jet lagged Paul has just gone off with Lily to watch Noah be "under the sea' in his school production. It is wonderful how all the children with special needs are included - one very hyperactive little boy with autism who has to have his hand held at all time is starring as a pukeko ( a NZ bird and I have no idea how that fits in with under the sea!) and his special needs teacher is starring as a bush right behind him!
Monday, September 14, 2009
Noah has told us the school will then put "testicles on his corner". This had us rather flumoxed, so he put his hands out to the sides and showed us his 'corner' (arm pit)! As for the testicles, it seems most people call them tentacles!!
Saturday, September 12, 2009
Here's a few more pictures of our time at Disneyland and one of Lily at Madame Tussuad's - this had just opened in Hollywood and was her favourite part of the trip - it was just perfect for her as it concentrated on current Hollywood stars mostly, rather than historical figures as the London branch does.
- We wrote him a little book in advance - this had lots of positive statements about his behaviour interspersed with info about Disneyland - "I will hold mummy's hand at passport control and baggage claim" "I will stay in the hotel room unless mum or dad is with me" "I will try to stay with mum or dad. If I can't see them I will find a mummy and say 'I'm lost' " (This last one because Noah has no definition of 'lost' he just thinks it's an adventure!)
- We wrapped a little gift, let Noah see it and built up the excitement about it and how he would get it if he stayed in the hotel room when he woke up (our real concern was that he wold get out while we were still sleeping - he did this once in a hotel in Sydney and it was not a good experience!)
- Noah wore a hospital bracelet with Paul's mobile phone number on and a note saying we would pay for calls (as they would have to go through NZ). The bracelet stayed on till the last day although the ink was smudging a bit by then. When Noah somehow removed the bracelet on the last day I wrote on his arm with indelible marker but this wore off in the intense sweaty heat.
- We had some ready prepared "WANTED" posters with a photo of Noah, a sentence saying "Because of my disability I sometimes wander" our flight details, hotel phone number and Paul's cell phone. We gave one to the hotel reception and kept one in my bag and one in Paul's back pack in case we lost him and needed a photo. Paul also had a photo of Noah on his cell phone - we meant to take one each morning to show what clothes he was in each day but forgot.
- We took with us, a sign to stick on the inside of our hotel room door which said "Noah STOP don't go out unless mum or dad is with you" We also had a red cut out outline of a hand which we put by the door handle - this is the symbol they use at Noah's school on things he can't touch.
- We put a chair which would make quite a noise when moved by the door for the first few nights until we were fairly confident that he wouldn't leave
- Most of the time Noah wore a wrist band attached to a wrist band Paul or I wore. He could undo the velcro if he wanted to get away, but he actually quite liked the security this provided.
- Getting a Guest Assistance Pass from Disneyland was great as it meant much less queuing and times when Noah was likely to get bored or over-stimulated and display silly behaviours. Disneyland is very accepting when it comes to special needs and just being in that kind of atmosphere helped
With all this preparation we could relax a bit and only had one occasion when Noah left the room alone which was when he decided to get himself some ice. Noah is actually quite proud of himself for managing to stay safe and I think it has been a little boost to his self esteem.
We're trying to settle back to everyday life here now. Our focus is on Isaac now, as the ENT doctor feels he needs an operation to insert grommets (ear tubes). We are also seriously considering trying to do a tube weaning programme from Austria by email (If we can get the needed support from hospital staff here). The skin around his button is becoming so red, sore and scarred and it impacts our life so much (and Isaac's even more) having a tube fed child. When Hannah phoned us in USA and said she'd had to replace Isaac's button and call the Homecare team to check on it, we began to realise just how many potential issues there are.
We are trying to do the playpicnic the Graz clinic suggests (presenting lots of attractive food for the child to play with and touch without any pressure to eat) and Isaac can make a great deal of mess very quickly!
Wednesday, September 9, 2009
Sunday, August 23, 2009
Monday, August 10, 2009
Sunday, August 2, 2009
Today started (6.30 am) with Noah coming into our bedroom wearing his swimming trunks, when asked why he was dressed like this he said "So I can splash in the water on the kitchen floor"
Yesterday evening we had a goodbye party here for Paul's registrar who is returning to Scotland, so quite a few glasses and bottle of wine were still around in the kitchen which we didn't want Noah to touch. Paul disappeared downstairs with a few bath towels and soon Noah didn't need his togs as the floor was dry again.
We expected lunch time to be nice and easy as we could just warm up left over from the party, but the saucepan didn't see to be warming very fast and we realised the aga was almost cold. Noah said he had only pushed one small button with a circle on it for only a very little while.
Paul looked at the aga instructions and read "to completely extinguish the pilot burner press the button with the circle on"
We have finally lit the pilot light again (this involved going to the DIY shop to buy a special lighter) but will need at least 24 hours for the aga to be back to full heat.
Anyway the post is supposed to show it is not always Noah. Our solar heating system had stopped working and was reading temperatures of 130 degrees centigrade on the roof (in mid winter!) and only 14 degrees in the tank. I called the engineer as I was worried the pipes on the roof might explode or something.
When he came he found there was air in the system. I said to him in amazement "But how could a 10 year old with Down syndrome get air into the system?"
He looked at me as though I was a bit odd and explained it had nothing at all to do with Noah but with the way the system was installed!
The other incident this week was very scary but involved my friends son ( I'll call them Jackie and Robert) who is the same age as Noah and has severe autism as well as Down syndrome. It showed me how some children can be far far more difficult to manage than Noah.
Jackie comes for afternoon tea each Monday after school and it's one of the few times she get to go out with Robert and his sister who is also on the autistic spectrum.
Robert likes to climb into Isaac's cot and get hold of Isaac's toy frog and bite it (he has very few toys he likes and this is the same as one he has at home) and then climb between the sheets of our bed. If we try to stop him he plays instead with the sliding doors in the (supposedly) adults only lounge.
This Monday we decided to keep him downstairs. Robert is totally non-verbal, doesn't understand instructions and is quite big now for Jackie to lift. He nearly knocked Jackie downstairs at one point but we managed to get him down and then let him sit in the garden underneath the washing as he likes to watch it flapping.
I consider the garden to be well child-proofed as it has high fences around it and a swimming pool like gate at the only entrance.
We sat in the kitchen and could hear Robert. After a while I said "Where's Robert?" thinking he was back upstairs in our bedroom. Jackie looked around and couldn't find him and really started to panic.
I have to say at the time I thought she was over-reacting but in hindsight she was right!
She ran outside and I searched the house and looked along the river banks from our balcony but couldn't see him.
I decided to phone the police thinking that if anyone had found him they'd phone the police. By the time I got through I saw Jackie holding Robert outside.
He had climbed down the stones of the river bank (so was too low for me to see him from our balcony) and had been about to get into the river. Jackie had screamed at some passers by to grab him as he has absolutely no sense of danger and would have been swept away in the fast moving water. She says he is attracted by moving things so would just have wanted to get to it.
We worked out that he had probably dropped his toy frog over the gate in the garden then being unable to tell anyone about it had climbed over the gate to get it (Noah then helpfully demonstrated how it is possible for ten year old to scale a 1.2 metre high gate). Then Robert would just have wandered around until something attracted him.
Jackie has now decided that Robert will have to spend his visits to us strapped into his wheelchair and I've started investigating GPS devises that children can use. Apparently the Alzheimer's association have some which they will loan out.
It has also made me think about how terrible it would be to lose Noah at Disneyland in four weeks time. I think we seriously may rent a wheelchair there so that Noah can be strapped in it especially when we're waiting in queues. I've read on some forums that this is allowed for children with autism and other disabilities and sometimes you can enter rides by less crowded entrances. They say though that other people may frown on using a wheelchair for someone who can walk as they think you are trying to queue-jump and get special attention.
Saturday, July 25, 2009
Paul went to Boston to a conference then to North Wales to stay with his mum for 3 days and see his dad who is in a stroke unit. He was very grateful to have his opportunity to see them both.
Isaac can't tell us how he misses Paul so it's always good to see how happy he is when Paul gets back - he just hung to his trouser legs and followed him round everywhere.
Paul was soon back in the swing of things with Noah's behaviour - we went into town after collecting Noah from school and Noah managed to run off twice. The first time he ran upstairs in the car park after I'd told him not to, so I thought I'd back up a bit and stand somewhere where I could see him come downstairs but he couldn't see me to let him feel a bit worried. Needless to say this strategy didn't work, after about 5 minutes I wondered why he hadn't come back downstairs and looked over the railings to the shopping centre below to see Noah going happily up and down the escalators below - he had taken the lift down from the upper floor.
The second time we were walking past the court house which has glass panels at the front when Noah suddenly ran in, past the security guard, through the metal detector and down a corridor. The guard ran after him at first then obviously decided he shouldn't desert his place at the front desk so beckoned me through. I set off the metal detector but was still allowed to follow Noah upstairs (I guess if you found a very co-operative child with DS this would be a good way to smuggle a gun into the court house!) There were signs for the jury room and six courts but as I couldn't see Noah I had to call him so got a dirty look from a policeman guarding the door of court 3. We finally got down the stairs and outside again with some heart felt apologies from me.
Sunday, July 19, 2009
Yesterday I lost him and came my closest ever to calling the police - he waltzed into the house just as I'd written down the phone number of the local police station and was leaving for one final look for him before I phoned them.
We went to our local library (about 15 minutes walk away) then to buy stamps. There was a long queue in the post office and Noah had been misbehaving by looking through all the children's magazines and attempting to get out any free gifts attached to them, so when he went and sat on the wall outside I just left him as I could still hear him. He was making his usual 'urr' noise that he does while day dreaming. The noise stopped but I didn't think about it until I went outside (3 mins max) and he'd gone! I went up and down the nearby streets calling him, looking through shop windows until I eventually decided he must have come on home ahead of me - he has a good sense of direction - so I started home. I phoned Lily at home 4 times on the way but no Noah. Once home I phoned the library to see if he'd gone back there but there was just an answer machine as the library had now shut. I checked our phone messages, looked up the police number and in breezed Noah"I looked in the shop and no mummy so I came home"
I haven't been able to get a conclusive story from him as to what happened as he is obsessed by the movie 'Horton hears a Who' and the various explanations he has given relate to this eg. he went into hairdressers and asked to be made to look like the mayor of Who ville, he went down a road where he thought Jojo, the littlest Who lived.
Today he tried to help with housework, he unloaded the dishwasher that was unfortunately full of dirty crockery waiting to be washed, then he loaded the dishwasher after brunch but unfortunately did not take pancakes off the plates first!
About two o'clock, I asked why he was pulling the dining room curtains and he told me he was getting the house ready for the night. I opened the curtains told him it was too early and thought no more of it. Later I was baking with him in the kitchen, having a lovely time, when I heard an odd noise of water from above my head which is where our ensuite bathroom is.
I said to Noah "I think I can hear water upstairs I'd better run up and check" He didn't say anything and didn't come near when he heard me screaming for Hannah to get out of bed (poor Hannah has gastric flu and was asleep) and help me mop up the flood.
Noah had decided to run a bath for him and Isaac as part of getting ready for night. The bath was full to overflowing with steaming hot water and our floor (that the flooring fitters told me mustn't ever be submerged) was covered with about 2 cms warm water.
Eight towels and a lot of shouting at Noah later and I've finally calmed down, done the extra laundry and am looking forward to the start of school again tomorrow!