The Sky's the Limit

The 0500 alarm clock signalled the return to school routines following a busy half-term holiday. It is very black and quite chilly at this time of day, but my darling Mum has imparted the wisdom that you only need to get up the once, and this notion seems to help (a bit)!

Tilly seems to be over the chest infection that she picked up over the holidays and has finally finished the anti-biotics – the second lot already this season. However, I have noticed that Tilly seems actually at more risk of a choke towards the end of a cold, when I think that ‘we’re over the worst’. We’ve definitely had a few dodgy chokes and one serious aspiration when we’ve thought that Tilly was on the mend. At this point the secretions are particularly thick and sticky, and can present a problem when least expected. At least when Tilly is in full swing of an infection I’m ‘on the case’, suction unit at the ready and in almost constant use. Perhaps there is a false sense of security that develops that needs addressing?

Tilly is now into her winter respiratory routine which includes a daily dose of preventative anti-biotic, and a daily wobble on her “shaker-maker” or Hayek Oscillator which helps keep her chest as clear as possible. It is all very busy and sometimes rather stressful as we race against the clock, but Candice is a wonderful help, and is also reading Harry Potter to us which does bring about a sense of calm. I am hoping to use some of Tilly’s Direct Payments to have some help in the mornings which will certainly take the pressure off us all, and will hopefully buy enough time to get Tilly up on her feet in her standing frame again. I carry an enormous burden of guilt if Tilly is not accessing all the therapies that she could be.

We were invited to Westwood College this week to see how their adaptations project is going in readiness for Tilly’s admission in 2013. We were delighted and amazed to see how much thought and consideration had gone into ensuring that students who use wheelchairs will be able to move around the site. Fantastic and bravo to them!

Candice went to a Chess competition on Tuesday evening and was not back until way after 10.30 pm which was very late for the Griffiths’ household and had us all yawning for the rest of the week. Rolf took the time to start the Christmas shopping which has left us all in awe as this is a task usually reserved until the very last possible moment.

It was good to see Tilly back at ballet, and I am adding the link http://www.youtube.com/watch?v=8HWgyVdcM3s so that you can see just how Tilly manages to dance and access other things using her amazing arm supports. I just can’t imagine life without them now.

Another luxury that I cannot imagine managing without is the night-sitting service that we get from the Childrens Airway Support Team about three times a month. Sue was extra welcome this week as we were all running on fumes. I have such a good night’s sleep knowing that Tilly is being so carefully and lovingly monitored whilst I stack up the zeds.

I attended a meeting with Dennis from Rudyard Sailability and British Waterways to find a way forward in our endeavours to put in the concrete slipway for our new building, in the face of rising water levels. It was a very positive meeting and it is hoped that a dam will go into the bay of the Lake soon so that work can commence. The only trouble is that it has not stopped raining since, and we are concerned that we will miss this vital window of opportunity and our building project could be delayed for a whole year. Progress is really in the lap of the rainclouds.

During this meeting, however, I received a call from Ben from Caudwell Children, and within a twinkling of an eye, Tilly and I were doing a piece to camera for Sky News on the cuts to Children’s Services

http://news.sky.com/skynews/Home/UK-News/Stoke-City-Council-Faces-33m-Cuts-To-Budget-With-700-Job-Losses-And-Closure-Of-Sure-Start-Centres/Article/201011115795957?lpos=UK_News_Second_Home_Page_Feature_Teaser_Region_0&lid=ARTICLE_15795957_Stoke_City_Council_Faces_%3F33m_Cuts_To_Budget_With_700_Job_Losses_And_Closure_Of_Sure_Start_Centres__
It really is a funny old world when the most vulnerable of society appear to be the first to make the sacrifices. It is hard to imagine that such economies will actually lead to savings in the long run.

During this week’s Chess Club, Daddie was hard at it in the kitchen and garden in readiness for this year’s Griffiths Bonfire Night Party. It really was the best celebration yet, with a roaring fire, gluhwein, hot-dogs, stuffed jacket potatoes, parkin cake and a spectacular firework display. As an extra bonus, Tilly managed to stay outside with us for the whole time, braving the whizzes and bangs that normally send her for cover. The only sadness being that our camera is kaput!

Swimming this week was ever more manageable as we took along Tilly’s emergency transfer sling again. Where has it been all our lives – it’s brilliant. We’ve ordered the second one so that we can work with a dry one and wet one.

Saturday night was Daddie’s “Curry Nite” which was scrumptious. I think that Rolf’s cooking, along with his ironing and impressions are just three of his best qualities. Another one is his ambition for the future; “The best is yet to come” is his motto which I think is wonderful.

Rolf took the girls to their piano lesson with Fleur this week and is delighted that the new ramp to get Tilly into Fleur’s house works. Tilly came back full of joy because the Christmas songs actually sounded like they should as she is using her arm supports to play.

Tilly and I then had a fantastic time at a Family Fun Day which offered a range of sporting activities for those who live with disability. Tilly started with the Cheerleading and was thrilled to have made up a chant, as well as dance to one of her all time favourites, “Reach for the Stars.” Tilly then went on to have a go at table tennis, which to our complete amazement, and a bit of ingenuity with the arm supports, was brilliant. Tilly loved the football and as got her name down for the next football course. My only sadness was that the camera was not working to share Tilly’s smile with you.

This event was a fantastic opportunity for Tilly to break down the barriers and see how she could make sports work for her. The organiser and coordinator in Staffordshire, Mark Forsbrook, is a truly inspirational character who is determined to bring sport and achievement to all, including those who live with severe physical disability. Tilly had a magic time learning how to control the balls in Boccia (which is a bit like French boules) and then went on to beat one of the Volunteer helpers from the Caudwell Children. The winning streak did not stop here as Tilly went on to devise a unique way of delivering the ‘pucks’ in Curling, and much to everyone’s amazement, went on to beat her young male opponent . It looked like an awesome feeling for Tilly. I will certainly investigate the possibility of getting such equipment into school, and possibly Treetops. An opportunity like this would also be brilliant at the Jennifer Trust for Spinal Muscular Atrophy’s annual conference. Tilly has spoken of nothing else since!