Day +177

Posted on: 21/09/2014

Ava has had another good week at school and continued to make good progress with her therapy. We have been working on trying to help moderate her nervous system, as she has been 'sensory seeking' a good deal. This essentially means that her nervous system is under responsive and she is seeking 'sensation', for e.g. in the need to bite or have deep pressure applied to her body. So Ava is currently wearing a special bite necklace to school (a chewy rubber heart) and enjoying 'crashing' activities. Diving into a huge pile of toys gives her system the 'feedback' it is seeking and is also great fun. It has also helped to regulate her ability to fall asleep, which is great for all of us... I have had another victory this week in finally establishing a regular consultant for Ava, 19 months after her diagnosis. It has proved tricky because she was diagnosed by a metabolic consultant at Great Ormond Street Hospital, but ongoing follow-up should logically be done by a neurologist, as the effects of MLD are evident in the brain (hence the term 'Leukodystrophy', which essentially means 'destruction of white matter'). When we pursued treatment in Milan, we sought the opinion of private consultants and effectively dropped out of the system. However on Thursday I had a very productive meeting with several health officials, after which our consultant at GOSH was confirmed, as well as help with therapy, much of which we continue to fund privately. The other great news is that whilst Richard and I have been suffering with a very nasty virus, Ava has barely had a sniffle, which must mean that her immune system in considerably stronger than when we came home from Milan. This time next week we will find out for sure, as we will be back in Italy for our six months post-transplant checks. I can't wait. Wish us luck!