Tilly's spinal surgery was cancelled last Wednesday, but it did mean that she could have her best friend, Rebecca, come and have a sleepover. Like most little girls "sleepovers" are very important, and it is great that Rebecca is happy to come to our house and can manage to sleep in Tilly's room without being bothered by the noisy machines and my occasional overnight visits. Tilly does not go to any of her friends homes to play or stay, so it is so wonderful that Treetops can offer this activity. Candice always sleeps down with Tilly whilst I am up in the family room, and I guess one day it would be good for Tilly to take Rebecca or another friend with her if Candice is 'otherwise engaged'.
Thursday morning brought with it the news that Tilly's surgery was to be on Saturday morning and that she would need to be admitted to hospital on Friday evening. The half-term smiles, half turned down, as we immediately rearranged the days ahead. I could feel my 'stress-ometer' rising at the thought of Tilly's operation.
We rushed off to Orthotics to have Tilly's feet cast in plaster, that would be made into moulds and then plastic foot splints. Tilly needs to wear these 'ski-boot sized' contraptions twenty-four hours a day to prevent further deformities of her feet. The current pair are hopeless and chew Tilly's skin so much that she is unable to wear them for any time at all. Tilly understands the importance of splints, but really doesn't like them as they are far from a fashion item, but she needs to get splints that are bearable, and one day she dreams of having surgery to maintain 'shoe-shaped' feet forever. Tilly is a shoe-aholic!
We struggled to park, couldn't drop the girls off as the entrance to Orthotics was blocked. A car park attendant took mercy on us and allowed us to park in the "drop-off" space. We were ten minutes late for our half an hour appointment and promptly bounced out of the clinic! I was rendered quite speechless, and feared that if I tried to protest, that I might cry! It was explained that there were already people waiting; they were an Orthotist down; and that half an hour wasn't really long enough to cast both of Tilly's feet. I thought of the tens of hours that we have spent in hospital waiting rooms; and of the trouble and stress that we'd been through to get to this appointment; and of the delay in getting Tilly splints that would not chew her feet..........The Orthotist was sympathetic, the receptionist was clinical. I walked away feeling like we'd been used to loosen up the afternoon. I felt like I'd let Tilly down.
Rolf went out to collect Tilly's wheelchair bodywork that had been in a local garage for a respray. It looks amazing and really lifted our spirits. Then Rolf told us that the owner of the business had refused payment because he'd seen our little girl in the paper and thinks she's great at helping others, so he wanted to help her! He really saved the day and left me shedding very happy tears.
On Friday we drove off across the breathtaking countryside of Staffordshire and Derbyshire to Wakefield to an Open Day for Dogs for the Disabled. We were treated to a warm welcome and an impressive display by Ludo, a black Labrador and his trainer, Helen. Ludo was able to pull off jackets; fetch mobile phones; empty the washing machine; bark on request, etc. We were all spellbound. Then, the even greater joy of actually meeting Ludo and seeing that he is also a regular 'doggie', full of fun and love! We were all smitten. Other assistance dogs, their owners, volunteers and other families were also present and we had the chance to ask questions and explore the possibilities of an assistance dog for Tilly. The chances are that if Tilly is accepted by the Charity that it could take up to a year before a suitable dog is found for her. Tilly is counting the days.
Before Friday was over there was another turn of the revolving theatre door and we learned that Tilly's operation need to be rescheduled again. Once again we quickly rang around and reorganised the reorganised events. We're starting to feel dizzy!
Saturday was taken up with an urgent meeting of Rudyard Sailability. It seems that there has been another critical delay in the Charity obtaining a sub-lease from the Managing company of the Lake, and that the Landowners, British Waterways seem unable to help. The Trustees, frustrated and exhausted with the whole sorry affair, decided to take action.
Candice had her friend over for a sleepover to join us in our Halloween fun. With everyone spookily attired the evening was filled with bobbing for apples, pumpkin carving, games, activities and an eerie trip to the Churnet Valley Steam Railway.
Sunday morning saw us jettisoning off to an early piano lesson, negotiated via a portable ramp in wild, wet and windy conditions. It was worth it as Tilly tells me that she can now play "Rudolph the Red Nosed Reindeer" on her own!
We scrambled into Church with minutes to spare and I really appreciated the time to 'pause for thought' as it was a calm and quiet service.
I spent the afternoon shovelling tons of leaves, whilst Rolf scaled the ironing mountain and the girls played on their computers.
The house was filled with the aromas of a Sunday Roast, and my tummy was filled with that 'end of the holidays' feeling.
I spent a couple of hours writing up the blog and omitted to save it! I'd lost the lot! I decided that I would try again the next day, and found a glass of sweet vermouth with ice and lime waiting for me in the kitchen. My saving grace!
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