Archived Entries from 2014 - 2015

Ava has had a good week, with three positive days at school before our half term began on Thursday. She had been doing very well in her lessons and even did the same work as the rest of her class in maths, which is quite an achievement considering how difficult number processing has been post-chemo and how far behind she has been. I have also noticed in the last couple of weeks that Ava has been a....

Ava has made a very enthusiastic return to school following our trip to Milan. Dr Biffi has always maintained that being amongst her peers and being mentally challenged to keep up is one of the best things to aid Ava's recovery. We have certainly seen evidence of this over the past 2 weeks, when her very upbeat mood has been noticed by many and her teaching assistant has made several comment....

Another nil by mouth start, this time for a swallow function test. The ability to swallow is one of the things that can be affected by MLD and since Ava has started to cough when she is drinking, I wanted to check whether this was the first sign of some degeneration in this area. Ava was very brave as the camera was inserted into her nose, in order to look down her throat. She then swallowed both ....

We began today nil by mouth for an ultrasound scan of Ava's gall bladder. After a late breakfast Ava did another small part of the neuropsychometric assessment which had been missed yesterday. Because it was so brief I was allowed in the room and observed a test which involved identifying very complex shapes against the clock. Given Ava's slow processing speed, I was surprised to see her....

A very interesting day today. This morning I had a meeting with a very experienced neurologist, who helped me understand a little bit more about the make-up of the nervous system and why we are seeing very noticeable effects of the disease in Ava, despite the appearance of disease stability in all of the biochemical tests. She explained that the Central Nervous System is made up of isolated areas ....

Today was relatively relaxed, with only a 2-part neuropsychometric assessment from 10.30-12 and 3-5pm. In between we managed a visit to the toy shop under the hospital and to have lunch in our hotel at a reasonable time. Ava managed well with her walking frame this morning, although the walk from hotel to hospital took her around 30 minutes (5 if you are able). It was a reminder of how hard things....

Last night we flew back to Milan for Ava's 18 month post-transplant checks. We started our day at the hospital at 8.30am today with height, weight and blood pressure checks, followed by ECG and a multitude of blood tests. It was lovely to see an array of friendly faces, including translator Samir, nurses Gigliola, Silvia, Alda and Morena, psychologist Francesca and doctor Laura. Next was a ge....

Ava has had a good start to the new term and is getting on well with her new teaching assistant. Her brain is certainly being stimulated by the other children and she seems well engaged and more chatty. She has a walking frame to help her cross the playground and crucially this is keeping her active. It also allowed her to take part in a trip to the Florence Nightingale Museum last week, which she....

Ava has had a much better week and done some great work in her therapy sessions. Although she is still struggling to put weight over her feet and regain her normal walking pattern, her sitting to standing is much steadier. On Sunday we also had a fantastically uplifting moment when she stood up and walked a dozen steps completely independently. This is something which she hasn't done in month....

A mixed week last week. Ava had a couple of off days mid-week where she struggled with her therapy and seemed to find it very hard to concentrate or be motivated. She has been sad without Angelina around, which may have had a lot to do with it. Thankfully she seemed over this by Thursday, when she began working hard again. The therapists have started noticing an improvement in the quality of Ava&#....