Day +360 - Image 1

Day +360

Posted on: 23/03/2015

Today was a busy day of testing. We started with abdominal and thyroid scans, followed by chest and hand x-rays. Afterwards we met with Dr Biffi and her team and Ava had countless blood tests, as well as a general physical examination. Next were brain wave, eye nerve and ear nerve assessments. After lunch Ava had a heart scan, a brief assessment by the physiotherapist and a visit to the dentist. We didn't have any scan results today, but everything else went well. It was lovely to see lots of familiar faces on the medical staff and nice to meet some new ones too. We also met a couple of other families with children currently in Gene Therapy or about to begin. I remember their fears and uncertainties only too well and feel quite incredulous at the fact that Ava's treatment here was now a year ago. It was lovely to sit outside in the sunshine, eating our lunch by the same fountain as I did most days during my break from the isolation ward, but without the anxiety of that time. Of course we still have our worries, but today Ava has done fantastic walking and reading and all in all we are feeling pretty upbeat.




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