Lily's school graduation

On Friday, Paul and I, Isaac and a teenager from church we'd ended up babysitting went to Lily's graduation. It was lovely and as is usual in events at special needs units very accepting of noisy and unusual behaviour, so Isaac fitted right in!

Everyone in the unit got an award -Lily's was for drama and was presented by her helper who is a dance instructor. Lily did a wonderful goodbye speech and was given some flowers and a school mug. Lily has been very well liked at school and has loved being there. they are genuinely sorry to be losing her. I reminded them it will only be a few years and Noah will be coming along!

Lily giving her speech, helped by her teacher

Lily receiving flowers from her favourite helper and drama coach

New words to Away in a Manger

Our foster daughter J has had a really rough ride recently for various reasons I can't blog about and although she spends a lot of energy "trying not to think about it" she is very deeply hurt.

Which is why it was even more poignant tonight when she said she'd just heard the words of the last verse of Away in a manger and they were about her - "Bless all the dear children - the children in care." Nearly brought a tear to my eye and I'll never sing the carol again without remembering J's courage.

Happy thanksgiving

Yes I know thanksgiving is not a New Zealand celebrated festival. In fact some NZ friends of ours were at a thanksgiving dinner in LA one year and a woman asked them if they celebrated thanksgiving. They replied that as it was about the pilgrim fathers surviving in America it wasn't really relevant to NZ and the woman replied "Well I suppose you don't have anything to be thankful for in New Zealand"!

Years ago I read that Mia Farrow used thanksgiving as an opportunity to remember her adopted children's birthparents and that seemed such a great idea that I've copied it since then. At the moment the four children at home all have different (biological) mothers and fathers - I quite like shocking people by saying I have children from 4 different fathers!

Joe and Hannah came to celebrate with us and we got out photos of Lily and Isaac's birthparents and J's mum, then lit a candle and proposed a toast to each set of parents in turn. I proposed the toast for Isaac's parents, Noah proposed the toast for Rachel's parents and Lily and Georgia each proposed a toast to their own parents. It is good to have a time to remember that these are the people who gave our children life and no matter how many negative things have happened this is a core reason to celebrate. We also combined it with the way we celebrate family Friday, loosely based on the Jewish sabbath, so the candles represented too creation and redemption which seemed very apt.

We had roast chicken (rather than turkey) and had some roasted pumpkin with that (rather than the traditional sweet pie) then had Christmas pudding. This was a small sampler pudding I made to test the larger one for Christmas.

I never remember to write down a recipe for Christmas pudding and have to search the Internet for recipes that will fit with the ingredients I have available. This year I didn't want to use breadcrumbs (as Paul broke the food processor in May by filling it to the top with pumpkin soup which leaked into the motor and shorted it!) and only had seven eggs but I found a recipe that has worked pretty well.

Bath filled by Isaac

I keep saying that Isaac is like a different child since his last surgery - the downside is that although he is very cute he has become a total menace. While I was on the computer this morning I heard him crying in the bathroom. He was crying because he was using one hand to push shut one of the vanity unit drawers onto his other hand. - He does a similar thing in the toilet sometimes, pushing down the toilet seat onto his hand. Once I rescued him from that I realised that the contents of that drawer, all our toothbrushes and toothpaste were now in the bath along with one of his shoes, a pair of sunglasses, some bath toys, a toy car from the playroom and a dirty nappy!

Later once the kids were home from school they all played in the garden, then I realised the older ones were back inside but where was Isaac. I went out and called him with no response. (This reminds me of Noah when younger he could see no reason at all to respond to his name and the only thing I could call that might make him come was "pizza") I started looking all over the garden and even by the hole that leads under the house and eventually found him crawling happily in the narrow corridor between our garage and next door's fence.

We'd better watch out I think he is really in the toddler phase now!

Reece's rainbow

One of the websites I love visiting is Reeces rainbow. This was set up a few years ago by a mum who's son Reece has DS to promote the adoption of children with DS in orphanages overseas. The stories and photos of some of the kids are enough to break your heart and 80% of these children die when they are moved from an orphanage to an institution at age 4 or 5. Only people in America can adopt the kids but anyone can sponsor the adoption of a child.

This month the Reeces rainbow blog is featuring people who've adopted children with DS not necessarily through Reeces rainbow) and tomorrow our family is to be featured.

Isaac walked!

Yesterday we went to the annual Christmas BBQ held for all the lab staff in a lovely big garden. This has been the site of some horrendous behaviour from Noah in the past but he behaved really quite well yesterday - the only issue being that he lost all the tennis balls by throwing them into the hedge, still at least he is now too big to crawl under the hedge into an adjoining garden as he has previously tried to do. We also saw one of the nurses who said she had met Noah at church last Sunday and helped him return a fire extinguisher to the wall!

Yesterday though it was Isaac who was the star of the show. When he wasn't walking for his 3rd birthday we decided to make Christmas the aim with walking being his present to us. But he decided he couldn't wait for that and pulled himself to his feet in the middle of the tennis court and took four steps in a row witnessed and applauded by lots of people. I didn't have a camera then and he hasn't repeated the walking today (probably not a big enough audience!) but I will try to get a photo sometime.

This photo is showing how cute he can be asleep though, sucking his thumb.

Our house is progressing really fast now and has a bright red front door - Paul chose the colour which was supposed to be a ruby red to match the aga - but we are quite liking this brighter colour and someone said "It suits your family because its really "out there" just like your family"

Lily's CT and MRI scans

Yesterday morning Lily had her CT scan - all over in 5 minutes with Lily lying absolutely still and very proud to be told she was the "best patient of the day" As she hadn't had any breakfast before the scan, we went across the road to a cafe and she bought herself an enormous cooked breakfast (and ate it all!)

Then at quarter to 4 in the afternoon the phone went saying Lily now had an appointment for an MRI scan at quarter to five - of course I assumed this must mean they'd found something on the CT scan. Luckily Paul was able to come and get Lily as otherwise I've had had to take Noah, Isaac and J with me too. They came back within about half an hour and again Lily had behaved fantastically although she had trouble getting the hospital gown off without help.

In the evening I said to Paul "Well at least we haven't ended up on a helicopter to Wellington for neurosurgery"" and he said "I never thought we would" -the difference between mothers and fathers I guess!

Anyway we got the all clear with the MRI report today which says

Findings:
The internal auditory meati appear normal. There is no
cerebellopontine angle mass. The 7th and 8th nerves have a
normal appearance. The cochlea and vestibular system have a
normal configuration.

As noted on CT there is some fluid in the right mastoid air
cells but not in the middle ear and the left side appears
normal.

Impression:
No evidence of acoustic neuroma.

So it seems it's just going to be a typical old age sensori-neural loss needing hearing aids. I know this can occur at a younger age in DS than with the normal population but still age 20 seems very young.