Last couple of months I have written a lot about the struggles we are currently facing getting Freya the services at home we need to keep her alive & well, and have some sort of semblance of a life other than a desperate scramble to manage every day. Since Freya was born I've encountered many [...]
NHS
Stupid is as stupid does
onUgh. 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 [...]
A mistake… or something else? Feeling queasy about continuing care
onIt's been overall a pretty crappy week. After the little lady's fun-filled birthday celebrations I started feeling a bit funny. First I thought it was directly related to the amount of sparkling wine consumed (child's birthday is as much theirs as it is their mother's) but soon it came clear I had caught some sort [...]
Year in review (and some medical updates)
onThe 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 [...]
The (inevitable) political one
onElections. 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 [...]
Food, glorious food
onI love food. I have always loved food. I love cooking and in my past life when I was able to travel I was happy to explore the culinary world (Yes to silk worms and tree ants in Cambodia. No to a mongoose in Ivory Coast, partly because it was still alive, happily digging a [...]
