Friday, 9 October 2009

Wheelie Good News

I fell asleep last night on the couch in the lounge, where I have been sleeping for the last week or so, under St Edward's First School's Disability Equality Scheme. Unfortunately, I hadn't turned that many pages, but will have another go tonight so that it is ready for the next Full Governors' Meeting. I am surprised at how much satisfaction I have achieved by being a Parent Governor, and how much I have learned.

Tilly had another very settled night. I am starting to feel vaguely human. Candice trooped off to school once we had located a school top, and supported her with her homework that could not be done the night before because she was at hockey and then ballet and tap.

The current guests are lovely. Room 1 are delighted with their room, their breakfast, the pub, and Rolf's suit that they need to borrow because the gentleman has left his in Wales! All part of the service!

Tilly spent the whole day in her wheelchair! This is music to my ears! Back up 'on her wheels again! ' Once back in her seat Tilly remarks at how wonderful it is to be able to move her own legs for herself. The day is spent with Tilly being "Tilly" punctuated with various rounds of secretion management. I cannot help but marvel at the amazing skill of this little girl in removing all the secretions from her chest - I don't think she'd manage without it.

The day was marked with culinary milestones for Tilly who has not really eaten since last Wednesday. Daddy's 'full Monty' for breakfast. A ham sandwich for lunch and then, joy of joys, "tea, like a proper family for once"! It is amazing how big a part the enjoyment and appreciation of food plays in the running of our little family. It is a real benchmark of how things are.

Tilly missed her first Year 5 disco at the Junior High School tonight which was a shame, but I guess that being able to attend all the acitivities is another indicator of how well Tilly is doing.

There was a surge of media activity this afternoon with Channel 5 News announcing that the phone lines are open for voting for Tilly as Britain's Kindest Kid, and Central News arranging to film Tilly on Monday morning at school. All very exciting! The local Press have also been very supportive of Tilly's latest adventure, just as they have been in the past.

All in all, a 'wheelie' good day. Just as well, it's the flu jab tomorrow!

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