Finally in 'the system' - Image 1

Finally in 'the system'

Posted on: 29/02/2016

Ava is still unable to wear her AFO's unfortunately, but nevertheless we have had a positive couple of weeks. We haven't seen the Physio guru Margaret Mayston in a few months, but last week we were fortunate enough to have her work with Ava for a whole hour. Margaret really challenged Ava to support herself, not only making her stand for quite some time with just a hand on the wall for support, but also testing Ava's fall reflexes and encouraging her to correct herself when pushed. It was certainly more daring than anything I would have done and it led me to think that perhaps we are exercising a little too much caution with Ava at home. We must try our hardest to support Ava less and ensure that she uses her walking frame more than ever. Afterwards Ava seemed to have more confidence in her own abilities and has actually been standing for longer on her own since that session. The other fantastic thing that has happened is that we now finally have a dedicated metabolic consultant for Ava at Great Ormond Street Hospital. Only 3 years after her diagnosis in February 2013... I was incredulous to hear that the last notes on file at GOSH for Ava were from before her transplant. Professor Paul Gissen has now agreed to take on the management of Ava's case in the UK, which should mean that she is monitored regularly and that someone other than me will be responsible for her wellbeing and rehabilitation programme. HURRAH!!!



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