Day +185

Posted on: 30/09/2014

Today started with the wonderful surprise of 3 packages from the mystery parcel sender! Apparently they arrived at the hotel just after we left Milan in June and our lovely waitress Iolanda has been keeping them safe for us. Ava was delighted to unwrap a 'Frozen' card game, some bubbles and a super Dr Seuss book. It occurred to me that many of you must have been guessing the identity of the generous sender of these parcels during our time in Milan - I can reveal that we have since discovered it to be the ever thoughtful ANA POTTER, co-creator of this beautiful website! THANK YOU Ana for giving Ava many fantastic gifts, such priceless excitement and hours of fun speculation. Ava was nervous about her anaesthetic this morning and today's parcels provided the perfect distraction. Ava underwent an MRI brain scan, a bone marrow aspiration and a nerve conduction test. She was fine throughout the procedure and although somewhat sleepy for several hours afterwards, did not have any sickness as she usually does. Her nerve conduction was stable and the MRI results should hopefully be through in the next couple of days. The bone marrow must be cultured, which is approximately a 3 week wait for results. Whilst Ava was under the anaesthetic, I dashed off to her favourite bakery 'Mrs Duls' for a lunch of chicken goujons and fresh fruit. I'm glad I did so, as the hospital tray of grey fish and over-boiled carrots was decidedly worse than yesterday... On my trip out I met Malin, the Mum of Ville from Sweden who is currently undergoing Gene Therapy. Although Ville is suffering from oral mucositis, as Ava did, I was relieved to hear that he is generally doing ok and the family are coping well. It was also nice to see their beautiful daughter Thea, who's MLD is unfortunately too far progressed for her to benefit from GT. Dr Biffi is however sending her for some intense physiotherapy whilst the family are here with Ville and Malin was excited to report some improvements in her core stability and her speech. Ava also had a physiotherapy assessment today and was happy to see Massimo again. He gave us some invaluable feedback regarding therapy for Ava's balance and coordination issues, so I am feeling positive that we may see some future improvements.