As Clara gets older, she's starting to show signs of her hearing and speech capabilities. But, science is science, and where there's technology to assist in diagnosis, it's always worth trying to find out a little bit more if possible. So, we revisited audiology a few days ago to see if we could learn anything … Continue reading Audiology: another attempt to understand Clara’s hearing
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!
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
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
With most babies, weight gain is considered a sign of success. After the early stages, you get baby weighed every few months to check all is well. With Clara it's a little more complex. We're getting her weighed weekly at the moment since she lost a chunk of weight when she had rotavirus. Clara had … Continue reading Short Gut Syndrome: diet and weight management
This week wasn't quite what we had planned. On the to-do list was pumpkin picking, play dates, and more. Unfortunately, Monday didn't start too well. We - and in the end it was all three of us - weren't going to be going to any pumpkin patch anytime soon after all. Clara usually sleeps through … Continue reading Rotavirus