1 year + 179 days

Posted on: 23/09/2015

Ava has had a good start to the new term and is getting on well with her new teaching assistant. Her brain is certainly being stimulated by the other children and she seems well engaged and more chatty. She has a walking frame to help her cross the playground and crucially this is keeping her active. It also allowed her to take part in a trip to the Florence Nightingale Museum last week, which she throughly enjoyed. The school are trying hard to make sure that Ava is integrated with her classmates, although there have been a few occasions where she has been left out because of logistical issues, for example at lunchtime and during some lessons outside of her usual classroom, including ICT. We are working on resolving these issues and looking at ways to make the school more accessible to disabled people in general, not just Ava. One of the lovely class mums has also taken the initiative to organise a 'buddy' system for Ava, to ensure that she always has a class mate with her at break times, which has been met with much enthusiasm by all the girls.  We have also had a big revision to our therapy regime, after the physio guru Margaret suggested replacing 3 therapy sessions at the hospital every week with sessions of swimming/hydro therapy. As a result, we are now attending the Portland unit twice weekly and Ava is exercising in the pool with her excellent swimming teacher Musa on the other days. Ava keeps saying "I like myself better in the water" and she enjoys herself so much because her muscles are relaxed and she has no fear of falling over. Musa reports that she works very hard in the water and hopefully this new approach will make a difference and also be much more fun than time at the hospital. Angelina is also having swimming lesson just after Ava one day a week and last week Ava stood up by herself and watched her sister swim for almost 10 minutes! At home she has been managing up to 8 minutes and interestingly all of these times seem to be when she is concentrating on something else, rather than her balance. It is an indication of her autonomic responses working, which is very encouraging. I am looking forward to discussing this further with Ava's neurologist in Milan when we return for her 18 month post-transplant checks on 27th of this month. 18 months already!!