Archived Entries from 2016 - 2017

Another busy couple of days at the hospital. We have had 2 further neurology assessments; more neuro psychometric assessment; heart, abdomen, liver and thyroid scans; eye test; and a consultation with a dietician. This last appointment has rather perplexed me. Although Ava has grown 4cm since our last follow-up in September, the doctors are concerned that she has not put on the proportional amount....

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....

Today Ava and I flew back to Milan for her 2 year post-transplant assessment. Although people keep telling me they can't believe that two whole years have passed already, for me it often feels like longer, as Ava has changed so much since Gene Therapy, for better and for worse. She can no longer walk independently and some days it seems that her motor skills are undergoing even further declin....

Ava is still unable to wear her AFO's unfortunately, but nevertheless we have had a positive couple of weeks. We haven't seen the Physio guru Margaret Mayston in a few months, but last week we were fortunate enough to have her work with Ava for a whole hour. Margaret really challenged Ava to support herself, not only making her stand for quite some time with just a hand on the wall for s....

It seems like the first half of the spring term has passed in the blink of an eye. Ava is well, although she only managed 3 days with her AFOs before blisters got the better of her and they had to be sent back for adjustment. We are hoping to collect them later this week. We have been quite preoccupied with Angelina's 11+ exams over the past few weeks, but I'm happy to say that she been ....

This morning Ava collected her AFO's - aka Super-Legs! They are lightweight and very neat, a vast improvement on the cumbersome, ill-fitting NHS offering. Although Ava needs to break them for a few hours a day and we will not likely see their full benefit for a while, they immediately enabled her feet to clear the ground when walking (as opposed to her dragging her toes), which is a very posi....

The last few weeks have been dominated by Angelina's 11+ exams, which are now thankfully over. Ava's hip X-Ray revealed no cause for concern and we are assuming that she had either knocked herself, or been holding herself awkwardly. She is no longer in pain or walking on the side of her foot, so this issue seems to have resolved itself. It's possible that Ava hurt herself on the loo....

Two days after Santa came to our island on a jet-ski, we returned to London to find that he had also been to Warwick Square and left lots of goodies. Ava was thrilled to find an American Girl Doll baby and Angelina a laptop. We were also all blessed with horrendous jet lag (a 4am start for 8 days), but I can honestly say that our wonderful holiday was still worth it. We were lucky to have a week t....