Day +364

Posted on: 27/03/2015

A fantastic day today. We enjoyed an hour of sun before heading into the hospital for our last big day of testing. Ava went under sedation for a lumbar puncture, bone marrow extract, nerve conduction (electric shock) test and MRI brain scan. Afterwards we met with Dr Biffi for a summary of this week's findings... Although Ava's gross motor function has dropped by 3% (actually better than I expected), her brain scan, nerve conduction and IQ were all stable!!! Bone marrow and lumbar puncture results will take several weeks, but in general the doctors were very pleased with her. They have noted some improvements since our last visit; including in concentration, processing speed and her hand tremors. Ava's white blood count has also had an upswing, with very strong numbers including infection fighting neutrophils up from 1600 to 2200! We still have much therapy ahead of us, however the potential for improvement is evident and this is extremely positive feedback. Thank you to everyone who has sent their good wishes this week, your support, as always is very much appreciated. ❤️