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 [...]

The little lady's birthday is nearly upon us.  Freya spent last night at hospital having a sleep study to check up how she is doing respiratory-wise. It's a bit of time since our admission at the respiratory wards and everyone was impressed how well Freya is doing - with the big two looming in front of [...]

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 [...]

"Don't be afraid of different. Some of the most beautiful things in the world are different." A nurse who looked after Freya when she was a very ill baby In the grand casino of life my partner and I hit the jackpot of rare odds. Whereas statistics indicate that about 3% of babies are born with [...]

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 [...]