1 year + 187 days  - Image 1

1 year + 187 days

Posted on: 01/10/2015

We began today nil by mouth for an ultrasound scan of Ava's gall bladder. After a late breakfast Ava did another small part of the neuropsychometric assessment which had been missed yesterday. Because it was so brief I was allowed in the room and observed a test which involved identifying very complex shapes against the clock. Given Ava's slow processing speed, I was surprised to see her complete nearly the whole paper in the allocated time and without any mistakes. After this we met with another neurologist, one who has known Ava since our first visit to Milan in 2013 and who was officially still on maternity leave. It was good to see her and get her opinion on how Ava is doing. This meeting was followed by another, this time with Professor Aiuti, the head of the transplant unit and an eminent Gene Therapist, who will be overseeing the follow-up of Dr Biffi's patients for the next year. Dr Biffi will be on secondment to the Boston Children's Hospital, where she will launch the Gene Therapy trial for MLD for the US, which has different licensing laws to Europe. Prof. Aiuti was extremely personable and immediately expressed his commitment to Ava, which was very reassuring. We will still have contact with Dr Biffi but it is also good to know that we have someone so capable present at our next follow-up checks in Milan. After this meeting Ava completed more of the Gross Motor Function assessment, this time being observed ascending and descending stairs, as well as walking with her walking frame, both with and without ankle weights. All of these movement tests are filmed, compared to the previous ones and discussed by the therapists and neurologists. We had a late lunch, after which we met with the anaesthetist in preparation for tomorrow's procedures. We were then free to continue our search for the ducks and I'm happy to report that we found dozens of them at the pond in the hospital zoo. After they devoured a whole loaf of bread in minutes, we headed into the university building for Ava to make her customary prayer of thanks in the chapel. We are off now for a big dinner before another nil by mouth morning tomorrow. Every time we come to the restaurant in our hotel, the lovely staff present Ava with a huge bowl of cucumber before she even sits down and tonight is no exception! 



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