It was my birthday this week. Not a big one, but an opportunity to look back and see what life has brought us last year and what I have learnt. A year ago we had just been properly discharged from hospital for the first time since Freya's birth. We had previously gone through various attempts at [...]

If you ask a parent of medically complex child what their life is like they will often tell you it's one step forward and two steps back - though I think it's more like one step forward, twelve back, few side way steps and jump in the air - and this is very much what [...]

Ugh. Just ugh. I have numerous times written about the bureaucratic nightmare living with a chronically ill child is and the endless battles we have faced in the last two years to ensure that Freya's needs are properly met, but the events of last couple of months take - like people far politer than me [...]

Elections. Whether you rejoice in the small government approach of  the other side of the pond or rejoiced in the victory of the left in France there is a distinct smell of change in the air. Here in the UK parliamentary elections are around the corner. After the emotion provoking brexit referendum last year there are [...]

I know I am generally a bit of a lazy blogger and we have been busy with enjoying life with no surgeries planned, however, when I realised that this week is the Mental Health Awareness Week I knew I had to set sometime aside and write a piece on this very important topic. The aim of the Mental [...]

I have been thinking about being a parent as a role  parenthood as a concept a lot lately. Firstly, as it was mother's day here in the UK quite recently and secondly, as my own parents are visiting after months of having been on a flying ban due to my mum having had a hip replacement. [...]

I've been quiet on the blog front recently as it's just been busy. We've had a bunch of outpatient appointments. Freya got an infection in one of her jaw distractors, some sort of upper airway bug and an ear infection. It's taken us over three weeks to shake these off, and although we are pleased [...]