GOOD results

Posted on: 27/02/2017

We are now back home after a busy week of testing in Milan. Following numerous blood tests, scans and X-rays, Ava also had a 3 hour neuro-psychometric assessment and a lengthy Gross Motor Function assessment. Although some of the results are not in (including bone marrow and cerebrospinal fluid, which take several months to culture), the doctors are very pleased with Ava's progress. It seems that many of the massive fluctuations in her nervous system are finally beginning to stabilise. Some areas are showing improvement, including cognitive ability and her more recent postural weakness. Ava's gross motor skills continue to present the biggest challenge and it could be several years before we see any big changes, however the improvements so far indicate that potential is there and we are therefore advised to continue with all of our therapies. We certainly seem to be on the right track with the standing frame and customised seating and look forward to the new community team giving further help and guidance to Ava's school. Despite a demanding week, Ava was delighted to have Ella's company and we all enjoyed spending time with the Vivian family. Despite both being affected by MLD, both Ella and Eli continue to shine, Ella with courage and kindness and Eli with the best sense of humour and fascinating movie knowledge. Their Mum Becky and Grandma Joyce have been excellent company and really helped make the week fly past. It was especially lovely to have Richard and Angelina with us for the last 2 days. It's a shame we don't all live closer, but let's hope our next trip to Milan also coincides with theirs!