Friday, 12 March 2010

Is it the weekend yet ?

Tilly continues to make great improvement with her swimming teacher Louise and the new floating aid, and I still marvel at how high Tilly is now able to lift her arms out of the water to do the backstroke. Louise is hoping to get Tilly to swim on her tummy using this float very soon. The most amazing thing about it is that it costs £6.40! I'm surprised because it is so often the case that anything like this with a 'special needs' application would usually have the decimal point after the four (more often after the zero really, Rolf says)!

The girls spent a perfect afternoon shopping with their special friend Molly. Andrea and I trailed an appropriate distance away so the girls could enjoy their independence seeking out the bargains. The biggest joy for us was seeing the trio enjoying their lunch together with Tilly managing on her own with her amazing arm supports. They are getting more and more an essential part of Tilly's life, and I love them.

We enjoyed a fabulous pasta 'like a proper family for once' on Saturday night and caught up with the Dancing on Wheels. We are all transfixed and inspired, and Brian Fortuna has gone up heaps in our estimation for his commitment to this form of dancing.

Rudyard Sailability's AGM was the meeting that I've been waiting for as the 'hot off the press' plans for the new building were shared. The proposed development is fantastic and will transform the lives of those using the Club. The drawings were viewed in a room filled with admiration and respect for all those involved in the intense mediation process, and immense gratitude to all those who have given so much to bring about such a positive outcome. Personally, after six years of battling, I am almost too afraid to cheer too loud until I see the first spade in the ground, or we are cutting ribbon at the opening! The next stage is to apply to the local council for planning permission which should happen very soon - 4th time lucky? We'll see!

A very special treat on Sunday evening was a family night out at a Chinese restaurant in support of Charlotte Atkins, our local MP. The girls loved being 'out in the dark' and once again Tilly's arm support played a major role in our enjoyment and caused quite a stir amongst the other diners.

Had to miss out on my trip to Treetops for their monthly support meeting as the 'man from the council' was coming to assess Tilly's bathroom with a view to installing a roll-in shower. After a quick chat and a couple of measurements he was off to discuss things with Tilly's Occupational Therapist - we await the results with interest.

Had the dreaded call from school on Tuesday as Tilly encountered a vertigo attack as she had laid back in her chair. Fortunately, Rolf and I were both at home and made our way to school behind every tractor and slow-moving vehicle we could find and arrived to find Tilly fearfully distressed and battling to steady the whirling room. The feeling of helplessness is profound and all we could do was wait and pray that this debilitating condition would pass. In the past, these attacks can last up to three days. We got lucky, and Tilly mastered the dizziness and we managed to get her home for an afternoon at home to recover, but sadly Tilly was not equal to her swimming session at Horton Lodge. Vertigo really is a curse - we've tried the Eplee manoeuvre with our wonderful GP and ended up calling the emergency services, and Tilly has had consultations and scans with the ENT team - all to no avail! Just another thing for Tilly to cope with.

I remember walking to the first school with Tilly when she was streaming with hay fever and we stopped for me to wiped her eyes - "SMA, Vertigo and now Hay Fever," she said, "Oh well - It could be worse!" and carried on her merry way.

Tilly had another splendid ballet lesson before school, dancing independently using her arm supports. It's another real challenge for teacher, Miss Jeanette, as she will adapt the syllabus so that Tilly can take her British Ballet Organisation exams. Can't wait to see how that unfolds.

Suited and booted, I whizzled off to the offices of Caudwell Children and immersed myself the vortex of this turbo-charged environment. I get an incredible buzz every time I enter as I know that all this dynamic energy is going to help families just like ours, and I love being part of them, if only for a few hours.

I dashed home and loaded up the car with all that was required to take Tilly to her new Frontline dance class, and then on to Brownies (dance gear, glide-away toilet seat, jacket-potato-cheezy-beanz, drink, Brownies' uniform, etc). Tilly loved the dance session came out saying that she'd made a new friend - a lovely little girl who asked Tilly if she could walk and when Tilly said that she couldn't this little girl took her hand and said that she would help her. Later in the session a young boy who was finding it hard to settle came to work with Tilly and Tilly said that he immediately became calm and gentle. He asked Tilly if she could talk, and then wanted to know how she got into bed. Tilly was tickled as this is the question that children so often ask her.

Yesterday was a day we've been dreading as it was Tilly's zolidronate infusion in Birmingham. The stress began with the car journey to the hospital with Daddy trying to find another route, avoiding the 70 minute delays on the M6. We had to go to Birmingham as it was the first time for this treatment, but hopefully we can arrange for it to be given in the local hospital next time.

This bone strengthening drug needs to be administered by a cannula which involves putting a needle into one of Tilly's veins. This is a highly traumatic and painful experience for Tilly as her veins hide deep below the surface and are notoriously difficult to find. Everyone in the clinic was lovely and friendly but that did not help calm Tilly's acute anxiety as she made her way to the treatment room. It was Daddie's first time present at such an occasion and it was not nice. After three failed attempts to get the cannula inserted, Tilly was purple with screaming and saturated with perspiration. Every one's nerves were in tatters. Rolf was ready to bundle Tilly up and retreat. A Registrar was called and Tilly was summoned for another try. More heart-wrenching yowls and sobs from Tilly, and eventually the job was done. Rolf and I were so grateful, but destroyed. Tilly recovered instantly, all forgiven and forgotten, and got on with her homework during the half an hour infusion.

When asked on a questionnaire what improvements to the service that we could suggest Rolf thinks that a range of optics installed in the treatment room might help!

We managed to negotiate the traffic in time to get home for a visit from Louis Parsons, an artist who has agreed to create a piece of artwork inspired by Tilly, that will be auctioned at this year's Caudwell Ball. Louis is no ordinary artist as he creates pictures that represent the spirit and emotion of the subject he is painting and he had come to meet Tilly to gain an insight to her soul. As Louis entered our home he brought with him a wonderful sense of passion and excitement about the project. Tilly took to Louis instantly and they were soon talking together effortlessly, with Tilly telling him all about her favourite things in life. Louis took notes and by the end of the session had made a sketch of what he has in mind for the oil painting he will create. It was beautiful. Louis said to Tilly that he thinks that this will be the coolest painting he will ever do and I believe him - his deep commitment to it is palpable and quite awesome. .
As Tilly's Mummy I find it an incredible honour and quite overwhelming that my little girl's spirit will be captured on canvas by Louis as an eternal inspiration to others. As Louis left last night, as this remarkable project begins, I knew that Tilly's spirit is safe in Louis' hands, for he already has her in his heart


bonnie harris said...

Why does she have to all these nasty infusions of drugs? Have you been told she's more susceptible than the next girl to fractures? And to stave that off she's trying to strengthen her bones chemically? I don't follow!

Tilly's House said...

Tilly's infusions are also given to the 'brittle bones' group. Tilly has had a number of 'spontaneous' fractures and her bones are described as being like frozen butter. This situation is not good for surgery as the surgeons would prefer denser bone to work with. In theory these infusions should be quite straightforward and should be much better than coping with fractures. The last infusion only took half an hour and will not need to be repreated for anotehr six months - so hopefully it will have been worthwhile. Tilly is due to have surgery late in April on her back and her knees. However, Rolf has said that if Tilly has any severe reactions (like last time) this will be the last one..........