Archived Entries from 2014 - 2015

Ava was tickled to fly home in seat '1A' and excitedly checked her new Swatch (a reward for learning to tell the time) every 5 minutes. At 5pm we landed in a very rainy Heathrow and before we disembarked, Ava and her new doll 'Luisa' got to sit in the captain's seat! BA Special Services whisked us through passport control and before we knew it we could see Ava's daddy....

Today was our last full day in Milan and it started with a surprise gift of this cute teddy bear from one of the waitresses, Alexandra, in our hotel. We managed a brief walk before the rain started and continued for the rest of the day. However nothing could dampen our mood, as we are both super excited about going home. Ava has chatted non-stop about her plans and can't wait to be back in he....

A very leisurely day in Milan today. We walked to the lake to feed the ducks and turtles before popping to the local shops to buy the last few gifts for some of the lovely friends we have made here. Ava enjoyed one last trip to the pizza restaurant underneath the hospital then we headed to the zoo. We fed bread to the cygnets, Ava's favourite, who seem to be bigger every day. When we returned....

A big day at the hospital today. Ava went under anaesthetic for an MRI brain scan, nerve conduction test, bone marrow extraction and catheter removal. Having 'Wiggly' the catheter removed was especially exciting for Ava and is a huge milestone in her recovery. Everything went really well and, with the exception of a brief sign-off on Monday, Gene Therapy is done! This is an amazing feeli....

I cannot believe we are at 90 days post-transplant! This is the number we knew we would have to get to before Ava's 3 month post checks could begin, the final hurdle before coming home. There is no denying that the past 90 days have been very tough at times, however Ava's staggering bravery has certainly made things easier for me. The exceptional care we have received at Hospital San Raf....

I was staggered this evening when the head of the Ferrero family gave Ava her own personalised jar of 'Nutella' AND a magnificent 5kg jar! Such incredible thoughtfulness is a perfect example of how the Italian people have gone out of their way to show their kindness and make us feel welcome here. Thank you very much indeed Mr Ferrero, "sei meraviglioso!". Thank you also to his friendly ....

We couldn't resist another photo, we are so tickled by this. Ferrero are celebrating 50 years of Nutella, long may they prosper!

Last nights thunder storm and torrential rain lasted all through the night until around lunchtime today. So we were house-bound this morning and practised telling the time and did some more packing. When we emerged we discovered that the hotel garden was completely water-logged and the nearby car park flooded. It seemed in total contrast to the very hot weather we have been having, yet by mid-afte....

We had no plans this morning and the weather was forecast for thunderstorms, but we took a chance and ventured up to the lake, where it was warm and sunny as usual. Back at the hotel for lunch Ava had a lovely surprise when nurse Federica walked in. We haven't seen her since we were in isolation, where she was really caring towards Ava and made her laugh a lot. Ava lit up instantly today when....

Today we had an early hospital appointment. Ava was nervous about having to have a routine anti-pneumonia treatment which is administered via a nebuliser, but thankfully the doctors decided that she was strong enough to go without it. Her blood results were good - neutrophils are still 1200, but platelets are 138,000, which is fantastic! Ava did her gross motor function score test for Dr Francesca....