Milan again, already!

Posted on: 12/03/2018

A long overdue update... Ava is doing well. Her mobility challenges remain the same, however her conversation has increased, including her asking more questions, making more observations and even telling jokes! I think this is in part due to the fact that our school have integrated her with lots of other classes whilst her Year 6 peer group were working hard on their 11+ exams and she has thrived on this interaction. Despite all this, the last few months have been hectic and difficult for us as Ava's parents. Discussions with the Local Authority and NHS regarding their legal obligation to meet Ava's needs have intensified and we have not yet reached a resolution. Things are further complicated by the fact that Ava is due to transition to Secondary school in September and we have looked at countless schools without success. The majority of Westminster schools are situated in period buildings which are not wheelchair accessible. Those which are, do not feel that they could integrate Ava with the Year 7's, since her academic performance is a few years behind. Conversely, she has too much cognitive ability to fit into a ‘Special Needs' school. We had therefore hoped to find an accessible mainstream Preparatory school which goes up to age 13, which would offer a smaller, more flexible and nurturing environment for Ava's next few crucial years. However none of them have shown the compassion or loyalty to our family that our currently school has (both girls have been part of the community there for almost 10 years), which is sad but understandable. Unfortunately our current school cannot keep her back due to increasing accessibility challenges and lack of space to use her specialist equipment. So the search goes on. In addition, Ava's lovely teaching assistant Katie has had to return to New Zealand after almost 18 fantastic months with Ava. We led the search for a suitable replacement, which has been a tricky one, not least because it is a specialist position and one which would always be difficult to fill, let alone in the middle of an academic year. Thankfully we finally found a terrific new girl, Jazzel, who has been with Ava for the past two weeks and so far is settling in brilliantly. At least we have one less problem to solve! We are now back in Milan for Ava's 4 years post-transplant check-up. Promise to update again very soon...