Thursday, 1 October 2009

Smile for the Camera

Miraculously, yesterday at 1030, Tilly woke up and felt reasonable. The sleep seemed to have done her good and she was keen to get up and be ready for the arrival of Channel 5 News camera crew. The trio, made of Producer/Presenter, Cameraman and Logistics Co-ordinator had come to film Tilly as part of the Britain's Kindest Kid Award. They a friendly crew who worked professionally and efficiently capturing film, recording interviews and gathering up lots of photos of Tilly's many and varied activities. Once again, Tilly immersed herself independently into the action and seemed to enjoy the visit.

My lovely Mum always says, "It's an ill wind...." I've never really known the rest of the quote, but understand that it means that sometimes out of the bad comes good - and so it was with Tilly yesterday operating her electronic arm-support button with her foot, as she could not use her hand because of the cannula. It was Daddy's bright idea and it now means that Tilly can use both arm-supports easily at the same time (usually one hand operates the movement switch). It may well open up many new avenues including the piano. The equipment is used mainly so that Tilly is able to feed herself - a very important step forward as she did not want to be fed at The Junior High! This amazing bit of equipment is designed by NeaterEater Solutions, a Company based in Buxton.

Tilly and I hurried off to the hospital, keen to get the last infusion of pamidronate over and done with, with the expectation of meeting up with the Channel 5 News Team for a last piece of filming. Unfortunately, the Ward Manager was unable to allow the crew in to film as Tilly's ward was very busy and there were no other quiet, suitable locations available. It was such a shame as it would have been a golden opportunity to tell the Channel 5 viewers what a great job they have done with Tilly. Tilly's vein held out and she completed the final dose of the bone-strengthening drug by 2100. We bade fond farewells, thanked all for their wonderful care and skipped out into the darkness, complete with Tilly's monitor that had been serviced over the last few days. Another great job done.

At home, at 2200, we were delighted with arrival of Sue from the CAST Team, who look after ventilated children in the community. It was a terrific moment, because although I knew she was coming, I had forgotten all about this special treat with all the drama of the day. I could have kissed her! To have Sue watch Tilly overnight whilst I slept was a gift beyond compare. Little did I know how critical her support would be.

Rolf seemed rather low. Neither of us had eaten and now it was too late to even think about it. It must be very stressful for Rolf at home when Tilly is in hospital. Candice had been dropped off by the school bus after her netball match, had tea, got ready for Guides, but didn't go as her lift didn't arrive. No doubt a crossed wire, but it seemed to have made Rolf very sad.

This morning's news was not good. Sue had had an exceptionally busy night with Tilly who had been most unwell with sickness, although her respiratory system appeared normal as all her readings were good. My heart sank. What next? Is Tilly suffering the side-effects of the infusion or is this the start of something nasty? A constant state of apprehension re-seizes my being. Tilly's settled 'sleeping' breathing fills the room and once again we wait to see which way this journey will take us.

I wake beautiful Candice and we have a huge hug on the side of her bed. She doesn't remember me going in to her last night for prayers, but knows now that I did. I hear all the news of the day before and the plans in store for the day. We agree that it was probably for the best to have missed Guides and have an early night as her life has been very busy too. Candice loved the workshop at The Victoria Hall and was doubly thrilled that it took place actually on the stage! I can't wait to see her production next week. After breakfast, I saw Candice off on the bus and we checked that she had all that she needed. We ran back up the path for her hockey stick laughing at what similar 'scatter-brains' we are, and then she returned a few minutes later, breathless from running as she had left her homework on the table! Candice reminds me so much of me! Just too many plates spinning at once!

Tilly woke at 0830 needing a hug! I got on a chair and clambered onto Tilly's bed beside her and held her little hand whilst she drifted and dozed a bit. It's very hard to 'snuggle in bed' with a little one who is flat on her back with a ventilator mask on, but that doesn't mean that Tilly doesn't need that contact every now and then. Most children find great comfort under the duvet with their parents, and Tilly is no exception.

I lifted Tilly out of her bed and onto her powered wheelchair at 0930. She didn't seem too bad and said that she felt very hungry. We even saw a little smile when the DVD that Daddy had ordered for her arrived in the post. We planned to have breakfast and watch the movie. It is now nearly 1500 and Tilly has barely moved. She had a couple of big drinks, refused her food, asked for her ventilator back on and the curtains closed. Apart from a few mumbles, Tilly has slept solidly all day. All the readings on her machines still look great - so once again - I am still hoping and praying that sleep will be the key and she will wake up feeling like "Tilly" again. The thought of taking her to Pontins on the Brownie Holiday seems very remote at the moment, but we will have to wait and see how she is when she awakes again.

I spent a bit of the morning putting together a floral offering for the Church's Harvest celebration. The girls and I have been offered the "Children's" window to decorate at various times of the year and it is something that we enjoy, but are woefully inexperienced at. We decided that we'd do a harvest basket and Rolf had already bought some fine gourds to decorate it. The Church reassured me that as Tilly was unwell that they would look after the window, but I decided it might be good therapy to get in the garden and create something lovely! My basket was filled with berried greenery, ivies, cut flowers, blackberries, fruit, home-made jam, etc. On my journey down to deliver this offering the whole blessed lot turned upside down. Upon arrival the jam rolled out and smashed on the road and as I stepped back I squashed the squash. I was about to throw the whole lot into the Council bin when I saw the funny side of it - I'm obviously trying too hard and not cut out for this flower-arranging lark and the Lord is gently trying to tell me! Undeterred, I gathered up the battered collection and delivered it to the back pew and the expert care of the real flower arrangers. They were so pleased to see me, and so lovingly concerned about Tilly that I realised that it was all worthwhile - just the boost I needed.

Tilly came to at about 1530 feeling ghastly and very sick. We've done our best to settle her again and now another angel has arrived to support us. Ellen has arrived and is reading Tilly Hannah Montana The Movie again. Tilly has just told Ellen off for not using enough expression - could this be a little sign that she is getting better.

Better keep smiling and believing!

1 comment:

Mark R said...

I think what you are doing is astonishing. Good luck with your efforts - I will, for one, be following closely. And much much good luck to Tilly too.