Update

Vivi underwent orthopaedic surgery in June 2014 on both legs and feet. Afterwards she was set in leg casts for six weeks and then once again she started intensive physio to regain the strength lost as a result of the surgery and casting. In April 2016, Vivi will start a 10 week physio program after being accepted on the Star Study at Brunel University.

Vivi started back at school in January 2013.
It was quite a shock as the last time she had uniform on was 20th October! This means she lost ½ term from schooling.
Because of the intensive physio, on occasion she is only at school for 45 minutes before setting off for more therapy. It continues to be quite a challenge to arrange 3 hours daily out of school time! We have to travel to various specialist physio’s and trainers, this sometimes means leaving the house at 6.30 am to arrive in time so we don’t miss too much school. The schedule is variable each week but there are always early mornings and after school appointments.
At home we have various pieces of equipment including an ijoy (simulated horse riding action). We haven’t invested in a treadmill as yet because of Vivi’s poor foot placement. There is a narrow line between building up her walking ability and making her feet worse, one I am happy to leave to the experts at the moment.

She has become more mobile in some ways but the challenge really is to train her right leg to point in the right direction and to teach her foot not to roll on its side- something we take for granted when we walk. Her left leg also rolls resulting in ‘in-toeing’. As she does this with her right, her left leg does strange things to compensate as do her hips! However, we need to remember that, without the operation, there was not a chance to retrain her legs to do anything as they were locked, so she had no choices about her leg movements!

Vivi has stopped the very strong medication to help with the muscle spasms as so many nerves were cut, approx 50% in right leg and more in the left.
She is still under the care of Frenchay and their specialist SDR team and will be for 20 years. She is also under the care of Mr Tim Theologgis one of the leading paediatric orthopaedic surgeons based at The John Ratcliff Hospital in Oxford.

Because of the way she has walked prior to SDR and because of the effect of the C.P. on her muscles/bones and tendons she has quite complex problems with her feet, legs and hips. We were always aware to undue/rebuild the damage orthopeatic surgery would be needed. Now it is a question of how long we can hold this off without doing more damage as she needs some sort of life (and education between procedures).Multi level surgery of this nature is once again a 3 week hospital stay and a long recuperation and physio!

 

Her situation is continually monitored under the watchful eyes of both Frenchay and John Radcliff but it is going to happen in the next 12 months we think…

In herself she is as determined as ever, but when her energy levels are low and her physio is intense, she does have her moments when she tells me (in no uncertain terms) she wishes we left her in her wheelchair with stiff legs! This doesn’t last long thankfully as she knows to be an Olympic rower she has to work hard!
Three years of intensive level of physio is a tough call, but we knew that when we started this journey.

There is no cure for cerebral palsy, but SDR offers the only permanent solution to spasticity in legs; we have no doubt it was the best option for Vivi and one which, however hard the therapy, we will never regret taking.

This morning our fundraising stood at £61,600, out of this has paid for the SDR and aftercare therapy since the operation. As the Nice/NHS guidelines state 3 years of intensively physio and 20 years of follow up, we will of course continue with physio for the rest of Vivi’s life as this is fundamental to her continued physical wellbeing.
We will fundraise until we have £75,000 to ensure this can carry us through our program. If funds run low we will once again take up the challenge of organise fun, value for money events that people are happy to support and attend.

 

 

Thank you so much for your continued support; we could not have come so far without our friends and supporters!

Kind regards,

Helen Gregory-Osborne (mum)