Day +115

Posted on: 21/07/2014

The past week has been very much focused on getting Ava back to normal, with physio, occupational therapy and tutoring taking up most of our time. As Ava's new cells won't be fully working on arresting the disease until around 6 months post-transplant, we must still work very hard to keep her physically stable. Post-transplant she has some increased issues with her balance and coordination, however as exercise has proved very effective for her in the past, we are hopeful for some improvement in her abilities. Thankfully she is enjoying her sessions, particularly OT with Chrysa at 'Maximum Potential', where she and Angelina build spectacular obstacle courses involving lots of swinging, climbing and crashing. We are also doing lots of exercise again at home - this weekend we were delighted to be back in our own beds and finally unpacked from Milan! Ava also still has a fair amount of school work to catch up on, but we have been lucky enough to find a fantastic tutor Jess, who is bringing maths and English concepts to life with fun characters and a very engaging approach. For a moment this weekend I felt overwhelmed by our schedule and sorry for both Ava and Angelina who have a summer holiday filled with 'appointments' stretching ahead of them. Then I heard that Dennis, a beautiful 5 year old boy from Norway, had lost his battle with MLD. When I think about the horrors of this disease and the chance that Ava has been given to overcome it, I am filled with hope and gratitude. Exercise suddenly feels like a very small price to pay.