January 10th is Clara's Lifeday. It's like a birthday, except we're not celebrating her birth (oh no, that's too normal), we're celebrating LIFE. For on this day, Clara was given a chance at life. Today, a year ago, was the day we talked (very VERY briefly, ie we shut that conversation down) about palliative care.… Continue reading Happy 1st Lifeday Clara!
2018 will always be the year I truly found what life is about. It’s a strange one this year, New Years Eve. For whilst it is the end of a calendar year, and the end of Clara’s first year on earth, it isn’t the end of Clara’s medical year. On New Years Eve 2017 we… Continue reading 2018 is over, but life is only just beginning.
Last night Clara experienced a febrile sizure for the first, and hopefully last, time. A febrile seizure is a period of full body convulsions caused by a high temperature, and it's not as rare as you might think. Clara hadn't been right for the last 48 hours. She was teething, badly, her cheeks flushed red,… Continue reading A febrile seizure in a one year old
It's crazy to think Clara has now seen her second Christmas. That means a whole year has gone by since her story began. Christmas in 2017 was a reminder that our world had now changed (at the time we didn't know just how much!). Up until then, mid December was a blurry haze of new… Continue reading A very merry Christmas 2018
My darling Clara, if the internet still exists in 20 years in the way it does today, I hope you haven't minded me sharing your story. It's been so much more than just helping your mummy get her thoughts out so she can focus on every day being a new fun day with you, it's… Continue reading Now you are one
With just under a week to go until her first birthday, on Thursday 13th December, Clara finally mastered the art of being on the move. I've often wondered if she'd crawl. Until the last week or so, she'd shown little interest. She'd rock, then drop to her tummy. Or, she'd learn as far as she… Continue reading Clara can crawl!
It's been three months since we last saw Clara's Gastro consultant, Dr Rodrigues, to check up on her progress. For all of us, the focus was weight gain. Was she putting on weight? We'd all hoped she was at a faster rate than before. Whilst her weight had been going up, it was slow, the… Continue reading Gastroenterology clinic appointment: an update