Day +265

Posted on: 18/12/2014

Today's day at the hospital began with another blood test and then we met with Massimo the physiotherapist. It was good to get his opinion on where Ava's weaknesses are, as it is very important for us to focus her therapy on specific issues as opposed to general conditioning. Interestingly he identified weakness in her knees, whereas a recent assessment in London surmised that the problem was unstable hips. So now we will address both. Next was a meeting with neurologist Dr Francesca and psychologist Francesca, who were both interested to hear how Ava was coping post treatment. As well as their concern for her well being, we also discussed aspects of her behaviour to try to determine any evidence of neurological change without running a full IQ test, which would be too soon after the previous assessment in September. We had a nice lunch at the hotel Rafael with some of the dear friends we have made here (Laura, Federica and Gigliola above). At the hotel Ava also got a huge surprise... waiting there were 4 parcels from the mystery parcel sender! None of them bore any post mark, so we assumed they must have arrived in Italy just after we last left. I will never forget the excitement and delight these anonymous packages brought Ava during our lengthy stay here earlier this year and today she was just as thrilled to receive 2 DVDs, a book and a hilarious glasses straw. Today we also met the mum of Talleulah, a little girl from Kent who has just started her Gene Therapy and so far is doing well. We were also introduced to an American family who have a little boy Tyson who will begin his treatment in the new year. We wish them all much luck and hope they have as positive an experience here as we did.