Monday, October 26, 2009

Labour weekend

Summer has officially started now in NZ and in fact we did get some lovely summer weather.
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

See Isaac eat!

video video

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

remembering fostering and adoption

I've been so obsessed with Isaac's feeding recently (still proceeding but slowly, not at the pace I'd like!) that it's been good today to do something else. The fostering agency CYFS put on a talk about the importance of the first three years of life run by the Brain wave trust. it was great about the importance of attachment etc and in typical NZ fashion I discovered the presenter was someone I know - Pauline Allen who used to be one of the therapists at ABCD early intervention group.
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

eating and eating

Yesterday Isaac discovered he liked chocolate muffins - not a food we would have tried but he found some on the floor! Paul then gave him a whole one and he ate a lot of it. I found some cheese straws which looked fairly high calorie and he demolished a few of them too.
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

Happiest birthday photos ever!

I have delayed writing this post in case it was too good to be true but ISAAC IS EATING!!


It was a true birthday present to us as it was only on the evening before that he suddenly picked up a spoon and started stuffing the food into his mouth, On his birthday (Monday, which is when the photos were taken) he continued wanting food and happily feeding himself. There is so much mess because he didn't understand how to keep it in his mouth and swallow.

On Thursday evening Hannah had three leaders from the church youth group to tea and as we were all sitting eating Isaac began to take the carrot and cream puree into his mouth, close his lips and SWALLOW! I'm sure Hannah's friends didn't understand why this was so exciting for us as he just looked like a baby eating but to us it showed the real possibility that he will one day not need a tube.

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)
This has been real hard work for us juggling the amount of food he needs overnight to keep him healthy with how little he needs to keep him hungry enough to eat.

We spent ten days giving him 500ml of his nutrini energy formula at night and this was enough of a reduction (from his usual 800ml) to get him interested in food but it was only at tea time that he would allow much food in his mouth. Last Friday he was very interested in his play picnic so we decided to be brave and cut the nutrini to 250ml with 350ml water and from Sunday he's made this great strides.
Now we have to decide when to cut the volume of liquid to encourage drinking which is something he finds very hard.

Yesterday at mainly music I was so fortunate to meet a new mum who is a speech language therapist with a special interest in dysphagia (in post -stroke adults mainly but some knowledge of kids) She was able to bolster my confidence immensely. I have been researching the internet like mad and read all the info from Graz clinic in Austria but nothing beats having a person to talk to.

Yesterday afternoon the homecare nurses visited to weigh Isaac. I was very worried about this as I knew he had lost weight and we've been doing the feeding thing off our own back because there is inadequate help here (My friend Louise is in Graz at the moment with her daughter Anika after trying everything on offer in New Zealand).

I told the nurse that the Graz guidelines allow the child to loose 10 -15% of weight and when she weighed Isaac he was 12.4kg (13.1kg a month ago 13.8kg at a clinic visit before that). She just wished us well with the feeding programme and I was so pleased that he wasn't being taken into care or at least admitted to hospital that we had takeaway pizza for tea!!

Tuesday, October 6, 2009

Lazy school holidays

On Sunday morning Paul and I were lying in bed talking about what questions he might be asked when he does his talk about inr online to possible American investors. Hannah came in and said "Aren't we going to church then?" which was when we realised it had gone 9.30!

Instead we made pancakes for breakfast and had such a lazy day where we didn't even leave the house! Paul cannot remember when he last had a day like that and it is quite beneficial for Noah who seems to really need the holiday time to wind down. He is quite happy to spend an hour or more colouring - only using one colour per page and singing in a droney kid of voice. I'm happy to play on the game I've rediscovered on the computer -the Road to Eldorado, so we're planning a few more lazy days.
We are still feeding Isaac 500ml of Nutrini overnight then giving fluids through the day as he needs them. He is eating a little better but seems to have no control of his tongue so most food comes straight out. We've tried putting the stuff he doesn't finish down his tube. The baby foods tins are very smooth puree and today we tried kiwi crush which we hope will help his constipation.
We bath him in clean water (no soap I mean!) and encourage him to feed a doll. I thought these photos were so cute!








Hannah went to a 1920's style ball with her uni christian fellowship. Her friends came here to get ready and I though they all looked great!




Thursday, October 1, 2009

Day in Wellington

Paul had a meeting in Wellington yesterday learning how to give his 'pitch' next Wednesday for the NZ trade and enterprise awards. As it's school holidays I decided to take Noah and Isaac along for the ride.
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.


We went to see the giant squid and the simulated earthquake but Noah decided both were too scary so we didn't go in. He lost it at one point and lay on the floor refusing to move and kicking at anyone who came near but I am so used to these kind of outbursts that I wasn't even embarrassed and luckily had his wrist attachment on him so he couldn't run off.
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!