1 year + 359 days post-transplant

Posted on: 22/03/2016

We are fast approaching the 2 year anniversary of Ava's transplant and back in Milan for a very thorough assessment. So far Ava has completed 17 blood tests, spinal x-Ray, visual and auditory nerve response tests, brainwave monitoring, gross motor function assessment and neuropsychological assessment. And we are only on day 2 of 5... No results yet, although I was happy to see Ava fly through a lot of her IQ test today, definitely responding faster and more accurately than last time. Her gross motor function has not been great, but as Ava is extremely tired (not sleeping much in this strange and uncomfortable bed), we will repeat some of the exercises in the morning. In the meantime, we have been delighted to catch up with nurse Federica, who took her lunch break from the isolation unit today with us outside in the sunshine. Fede asked us to pray for Oscar, a gorgeous baby from Norwich who is undergoing Gene Therapy at the moment and having a really tough time. His family are here with Oscar's twin brother Phelix, also affected by MLD and due to start GT in a few weeks. If that's not enough for the family to deal with, the boys have a 3 year old sister, Paige, who is also affected and sadly too advanced to receive treatment. I can't imagine how they are coping with so much on their plates. It's a very poignant reminder of how there's always someone worse off than we are. We may have our struggles with Ava, but never forget how lucky we are in so many respects.