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!