Monday, December 7, 2009

Lily's dancing on TV news

We watched the full hour of the news yesterday (in fact we recorded it all) in the vain hope of seeing Special Olympics covered. However in the last 3 minutes they did cover Georgia, the teacher for the High School Musical dance group that Lily is in and showed them dancing. I thought it had a bit of a patronising tone very different to that of Special Olympics itself - see what you think the link to the video is here.

Isaac is still in a bad way. When he is in pain he holds out his hand to sign 'stop' which is very sad for us as we can't stop the stomach acid leaking out his side (from the fistula left where his mic-key button used to be). I spoke to a friend who's son had the same issue and she said he had become very unwell before he had surgery to close the fistula. She suggested getting a colostomy bag to protect the skin and collect the stomach contents.

Isaac couldn't go to Kindy today but instead his teacher aide came and played with him here and bathed and fed him. He is eating really well, even eating banana and drinking watered down custard. He has still lost 300g in weight on our scales though. I presume because of so much leaking out and the pain he's in. Tomorrow I will phone the home care team and ask if this is really what they expect in a child who's gastrostomy will close spontaneously and ask if I can email his surgeon at Starship hospital.

Paul has just left for Auckland (without me as we don't think Hannah can be left to cope with Isaac at the moment) I have decided to treat this unexpected time at home as a time to sort and tidy the house ready for the Down syndrome BBQ we have here next Sunday. Unless that is I can persuade anyone to operate on Isaac before then.


Anonymous said...

Poor Isaac. That does not sound right at all. I hope that they can operate or do something as soon as possible.
I watched the video and loved the dancing. It was a bit patronising, but not too bad I guess.
Good luck with Isaac. I really hope it gets sorted out soon so that he is no longer in pain.

Bronwyn said...

I hope Isaac is feeling better soon, poor thing.
As for the video footage - interesting! Saw Lily doing her thing which was great. Pity it had to be all about the teacher and not about the students. It's great though that Georgia has done this for the adults with DS. Do they really think the young people with DS don't care what people think though?

Nan P. said...

That clip is so cool. I got emotional watching it. It reminded me of the incredibly beautiful dance show given in Dublin last August as part of the opening celebration of the 10th World Down Syndrome Congress: 9 groups from all over the country putting a non-stop show for an hour... So moving!

Well done again to Lily, for all her hard work and dedication in dance and sport, and all the results she achieves.