A Newsy Week

On Monday Tilly was not well enough to attend the Birmingham Day Unit to have an IV infusion of Zolidronate - a drug that will increase her bone density - and so instead started on anti-biotics and snuggled down for a few days at home. With Tilly, it seems better to withdraw her from all activities at the beginning of a cold, rather than let her soldier on and see the virus develop into something very nasty needing a hospital admission. Tilly has today returned to school for half a day, so hopefully she has managed to conquer the cold before it took hold. Fingers crossed!

Good news came in yesterday that Tilly has been invited to play Chess for the County U11 Team. Tilly is over the moon and has been busy practising ready for her first match later in the month. Candice, too, had exciting Chess news that she has been invited to play at the local adults' chess club, along with a couple of other promising players from school.

Tilly's fortune cookie from the Wong Kei in London said that this week would hold the news that she'd been waiting for and it certainly was. It came along in the form of an agreement between the British Waterways, Rudyard Lake Limited and Rudyard Sailability to work together to provide an accessible boat store at Rudyard Lake. Whilst we were in London, all parties were locked in exhausting mediation talks that, at times, appeared to be going nowhere. Then, amazingly, after days of excruciating discussions an agreement was signed. All sides are to be congratulated for sticking at it and not walking away from the table.

We can still hardly believe it, that after six years of battling, there does seem, at last, to be an end in sight and Rudyard Sailability will have a permanent, purpose-built home at the Lake. The finer details are still being negotiated, and we do need to submit another planning application to Staffordshire Moorlands District Council. I can barely breathe in case it all disintegrates again, and I guess I'll only really believe it when I see the building going up, or better still, at the Grand Opening! I guess, nothing worth having comes easy, but to get this boat store has really taken an inestimable amount of effort by so many dedicated volunteers.


Another highlight was the visit by members of the team from Dogs for the Disabled who came to see if one of their trained dogs would be a suitable option for Tilly at this stage. We worked through a lot of paperwork looking at Tilly's lifestyle and the possible ways that a dog could improve her independence, and then, to Tilly's joy and delight, they introduced us to one of their dogs in training. We then did some practical tasks with this beautiful dog and Tilly got to take her for a walk. Tilly's best bit was giving out treats to the doggie, which gently took them from her little hands, making sure they were good and clean with lots of snuffles and licking during the process. I do understand that it is a huge commitment to take on an assistance dog, but I am convinced that it will have a huge impact on Tilly's life. We now need to wait to hear the outcome of this latest assessment, but either way, I am sure we'll soon be hearing the patter of tiny little paws!

I've just taken a call from the Caudwell Children regarding Tilly's contribution to this year's Butterfly Ball - more news on that later......