Hands Up for Tilly!

More progress for Tilly on the swimming front as her teacher, Louise, has introduced a new floating aid that means that Tilly can actually lift her arms out of the water and perform a backstroke! It is quite simply a 'woggle' bent in two with a net to support Tilly's back and allows Tilly to swim independently even in the rough waters of the Saturday morning swimming crowd. When Tilly went swimming in the quieter waters of Horton Lodge special school she found that she could do the backstroke, without the aid! I can hardly believe my eyes. Louise is an amazing teacher, always driving Tilly forward, and she is convinced that she will be able to have Tilly swimming on her tummy one day with this device.....can't wait!

Tilly has been practising Chess with Candice all week, and to our absolute delight has mastered the arm support to help her. Quite brilliant to watch Tilly's level of independence and confidence improve with the NeaterEater kit.

There was more to come as on Wednesday I failed to get Tilly comfortably in her standing sling ready to do ballet. We decided to give up as time was running out and Tilly chose to dance in her powerchair, but this time using both arm supports. The results saw Miss Jeanette and Tilly beaming from ear to ear as Tilly independently worked through her barre routines, achieving fifth position and more - a new chapter has begun - powered wheelchair ballet!

Still more breakthroughs as the days went by and Tilly's PE teacher at school advised us that a new group, Frontline Dance, were starting up after Easter. This company specialises in contemporary style dance, working with dancers of all abilities with wheelchairs welcome. Then the phone call came that the group was ready to begin that night and were we up for it! With a few hurried phone calls, a bit of rescheduling and organisation we went for it.

I scooped a delighted Tilly up after school, dashed her across town to meet up with Pauline, (Tilly's after school helper), spun back to school to crash in late to a Governors' meeting and then made my apologies to leave embarrassingly early; back to scoop up Tilly, who'd loved every minute, and then back up to the first school to have tea and get ready for Brownies which started at six. It seemed an impossible target to get all these jobs done within such a tight time-frame, but we were determined and I made the great mistake of triumphantly saying to Tilly on the way to Brownies - "We're on a roll!" and of course the 'Powers that Be' heard my self-congratulatory exclamation and before we knew it - Tilly powerchair was clamped in the car, unable to be moved out! Foiled again!

Fortunately, Pauline was able to dash up to collect Rolf who came charging down like the Cavalry and set Tilly free with a torch and screwdriver! Tilly made it to Brownies - all be it a little late - and can't wait for the next Frontline dance session!

The 'Powers that Be' were also listening when we had a marvellously quick and efficient trip to X-Ray for Tilly's CT Scan. This is a record I called to the staff as we skipped out, and cheered because we could even make it back to Chess Club at school. Big mistake, as no sooner had the words left my lips that it bacame obvious that I no longer had the car keys about my person. We scoured the car park, and were then taken pity on by a kindly member of staff who rang different departments and to our immense relief located the missing keys! I think I've learned my lesson and will button it next time things seem to be going our way!

Rolf forwarded me the call to vote every day in March for a Cure for SMA on the Pepsi website and I have been so uplifted by the many people who have responded to the call! Very touching and hopefully will help as we have moved up from 8th to 6th place since making the appeal. Thanks to all - keep it going and who knows what might happen?


I did a store collection for Caudwell Children this week and was so touched at the many people who stopped to talk to me and shared their experiences whilst they made their donation. So many lovely people about. I was also interested in the range of reactions to seeing me standing there with the bucket - those who felt that they had to give an excuse as to why they were not donating today; or those who found the crisp boxes opposite me so extremely fascinating and those who scrutinised their receipts until they were safely past. Naturally, I too have been in their shoes at some time or another - it's just human. I am sure it is a subject that comedian Michael McIntyre would have a field day with!

Rolf wrote to Boris about the lack of dropped kerbs in some of the very touristy areas of London and he had a reply from one of his assistants saying that it is the policy to be wheelchair accessible where possible in London, but that, in fact, the areas that we found lacking were not the responsibility of Boris as they were actually in Lambeth and Westminster! And there we were thinking that Boris was the Mayor of London and might be able to influence such locations! We've heard from a very reliable source, ie Bonnie,(commentator extraordinaire) that another group who advocate for wheelchair users are looking into this problem - so we wish them lots of luck as surely it is not too much to ask to be able to do the Lambeth Walk safely?

Yet more progress for Tilly this week as her Physio, Sarah, came round to the house to see adjust Tilly's standing frame, which is incorporated into her powered wheelchair. Tilly has been experiencing problems with standing as her splints have been out of action and she has developed a significant leg length discrepancy. Together they perfected Tilly's stand and to to our absolute joy and delight Tilly is also able to use her arm supports whilst standing. This means that Tilly can once again stand up every morning before school, whilst eating her breakfast. Double the joy - therapy and independence.

I'll vote for that!