Routine routines

The alarm went off at 0500 and reminded me that the holidays were over.

At 0630 I reminded Tilly that it was back to school again and she pretended not to notice me. I put on her bedside light; switched on the radio; collected her powerchair; positioned the ceiling track hoist; collected her sling; released Tilly from her overnight foot splints; removed her toe probe that had been monitoring her heart and oxygen levels overnight; removed her 'neckerchief'; unlocked her from her wrist splints; took away the 'head teddies' that keep Tilly's head in a good position during the night; switched off her ventilator; removed the nasal pillows from her nostrils and removed the headgear. Tilly pretended not to notice me. I made an attempt to turn down the bedclothes and Tilly's emerald eyes flashed open, and pleaded for 'one more minute!' The chilly dark mornings do not help, but Tilly is soon bright and breezy and ready to take on the morning routine.

Tilly needs to do some stretching in the morning to help cut down on painful contactures, especially behind her knees. Tilly is moved from her bed to bathroom and then her wheelchair using a ceiling track hoist and sling. This is a time-consuming process, but not uncomfortable for Tilly and simply life-chainging for me as constant lifting can be very problematic. Tilly is dressed in her wheelchair which can 'magically' be made into a changing table. There is a daily requirement for chest physiotherapy which is carried out using an amazing "Shaker Maker" machine. Whilst Tilly is being 'wobbled and coughed', I put on Tilly's foot splints which is not always that easy. Following this, Tilly configures her powerchair so that it has become a 'standing frame' - one of the best therapies possible for a child such as Tilly. This involves adding knee brace and a chest strap, and the chair moving to the vertical position from the horizontal. I set Tilly up with her reading book, propped on a pile of books with a plastic book stand. I collect her breakfast and Tilly reads to herself whilst I feed her her cereals as Tilly is unable to use her arm slings whilst standing. During this time Candice has floated down, perfectly dressed ready for school. We usually catch up on the news whilst Tilly is reading.

Following breakfast, we usually find that we need to press the old 'fast forward' button and get Tilly out of standing mode; clean teeth; do hair; sign reading diary; collect bags together' put coats on and try and leave the house by 0815. Candice usually goes out and gets the car ready with the ramp out and I skid out dragging Tilly's pink trolley full of her suction unit, arm sling, and school bag and any other PE or swimming kit as required. Getting Tilly clamped into the van is an absolute breeze as it is done automatically and the ramp is stowed away electrically. Regardless of these brilliant adaptations it is still quite a 'work-up' and I'm always relieved to find ourselves motoring on our way to pick up Tilly's assistant teacher and then make our way to school. Another morning 'in the bag!'

I had the pleasure of staying at school with Tilly for Monday morning to accompany the Pupil Council on an educational visit to Staffordshire Moorlands District Council. Tilly wanted to 'walk' with everyone else which was fine except for the drainage gullies cutting across lots of pavements that made for a really bumpy ride and we came across a car being booked for blocking a dropped kerb and gates. Tilly, however, took all these obstacles in her stride and just about kept up her peers. The session at SMDC was excellent, hosted by an officer from Stafford. Unfortunately, the local Councillor who was expected to help host this occasion did not attend. Very disappointing.

Once again, at 0630 Tuesday morning, Tilly struggled to wake up, but was soon bright and chatty ready for the day. It is a delight that Tilly is so very agreeable and such good company when there are so many laborious tasks to get through. Tilly did say this morning that if things had gone as planned "it would all be over by now" - so clearly the euphoria of having her operation cancelled has now worn off and the reality of "it" still looming has settled back in! I know it is always on my mind.

I was back 'suited and booted' today at the Caudwell Children's offices where I try to volunteer once a week if I can. A wonderfully exciting day as I was able to help with the final preparations for the families setting off on Sunday for this year's Destinatin Dreams trip to Florida. I worked in a wreath of amazing memories of our Destination Dreams trip last year.

Back home, I de-suited and donned a trackie as I set off to take Tilly up to her weekly swimming session at the Horton Lodge Community School which caters for children who are included into the mainstream setting, and are probably missing out on regular warm hydro-therapy. A glorious session and I get to enjoy the waters too. Ellen, Tilly's care worker, arrived and helped get Tilly ready and then disappeared off to collect Candice from Basketball. I just don't know how we'd manage without Ellen's support.

Home again, Ellen spent time making Tilly's hair even more beatuful and then helped Tilly enjoy her tea - Rolf had made 'Toad in the Hole'. Next time, Tilly says that she'd like a bit more toad and a lot more hole! Praise indeed!