Day +186

Posted on: 01/10/2014

A less hectic day at the hospital today, which began with a Gross Motor Function Score assessment with Dr Laura and neurologist Dr Francesca Fumagali. We didn't receive Ava's score today, however she is certainly having increased issues since her last assessment. She is no longer able to hop or stand on one leg without holding on to something. Walking on a line is also very difficult for her, as is walking steadily without shoes. However Dr Francesca was hopeful that we will see some disease stability soon and that with intensive exercise, Ava's abilities can improve. So we still have much hard work to do, but that is nothing we weren't expecting. After that session, Ava began her neuropsychometric assessment with psychologist Francesca, which will assess any decline in cognitive function. This test is very lengthy and will continue tomorrow. We had this afternoon free, so we headed off to the nearby shopping centre Carosello in Carrugate, where we bought jackets in Zara (it's colder here than expected!) and some 'Winx' sticker books. Ava loves the fact that Winx Club is a massive craze here and that all of the hospital staff know the characters names! This evening we had a surprise visit from nurses Gigliola and Federica, who joined us for dinner in our hotel. Ava and I were delighted to see them and couldn't believe that they brought a huge bag of gifts with them. They were all perfect choices for Ava: a cute doll and purse set, a Cinderella Lego kit and 'Frozen' memory game and colouring book. It was very touching to see how much they care for Ava and how they are genuinely interested in her welfare personally as well as professionally. It's not easy being away from home again, but such kindness and friendship make it so much easier.