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 [...]

January always feels like the longest month and this year has been no exception. Freya has been doing well, whizzing around the flat with her little trolley and being full of mischief (she's recently discovered the joys of dropping things in the toilet bowl. Must be a genetically programmed milestone for toddlers, and yet another [...]

"There is only one thing more precious than time and that’s who we spend it on" Leo Christopher I’ve been quiet on the blog front lately, not for any other reason that just because I have been busy. Freya caught an infection and we spent a couple of days in PICU. We had a wonderful [...]

It's December and I am cautiously getting in the Christmas mood. We have had a good autumn, with just one emergency admission and managing little lady and winter bugs at home. But I do not want to get too excited, as I know that any little blip can land us at hospital over the holidays. [...]

"We gain strength, and courage, and confidence by each experience in which we really stop to look fear in the face...we must do that which we think we cannot" Eleanor Roosevelt It was raining when we walked up Southampton Row. I glanced to my right and saw the work “Casino” in big blue letters. I [...]

I 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 [...]

I wrote some time ago about fear, and how as a parent of a medically complex child fear has become a permanent resident in my life. There is another feeling that has been making himself at home – anger. Not that I have been all Zen before Freya - Years ago, an old boss chuckled [...]

After five and half weeks of home time Freya fancied a break and we ended up at St Mary’s paediatric intensive care unit. After four nights we are back at home and overall it was a pretty good little break. A good little break at the PICU? Let me explain. Last Tuesday Freya was just [...]