Yesterday we held the Manawatu Down syndrome association Christmas party here. The weather managed to hold until just after everyone went home so even though it wasn't very hot and a bit windy we could use the garden as well as inside.
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.
143 days....Weird Goal, huh?
4 days ago