Thanksgiving

As usual we celebrated the American festival of Thanksgiving and as usual in the end it was worth the hassle of making a big meal and digging out the photos of the birth parents of Lily and Isaac.

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.

Angela the business woman or not

Sorry I haven't posted for so long
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.

Medical stuff - good and bad

The past three mornings (Friday, Monday, Tuesday) I've travelled into the hospital with Paul for various clinic appointments - you know you're there too often when the orthoptist recognises you, comes up to say hello and you say "Oh actually we're not here to see you, it's ENT with Lily today"

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%!

Progress with Isaac

It is now four days since Isaac had anything through his gastrostomy button and he seems to be holding his own. It's scary for us though and I so wish we had advice to turn to rather than muddling through on our own.
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.

Sam and Lily's disappointments

Today was the Auckland marathon, which Sam had been in training for for over 6 months - he ran his first half marathon the weekend of our 30th anniversary party and was looking forward to running over the harbour bridge today. Unfortunately the pain he had been having in his knee grew worse and worse and an x-ray showed a stress fracture so he's had to pull out.
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!

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.

See Isaac eat!

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.