Having a short gut baby means regular loose bowel movements are normal, sometimes restricting, often requiring extra considerations and planning. But for us gastroenteritis is a whole new level. Through diet and loperamide we’d managed to get Clara’s stools somewhat under control. There was still something I felt was a challenge though, we weren’t whereContinue reading “Gastroenteritis…again.”

Hearing, talking, signing – Auditory Neuropathy at 14 months old

Your baby is always your baby, right? No matter how little or grown up they are. Clara is 14 months old today and has noticeably grown so much in the past 4-6 weeks. We sat in Pret in the children’s hospital this morning, before Clara’s latest audiology appointment, and she was contently reading her bookContinue reading “Hearing, talking, signing – Auditory Neuropathy at 14 months old”

Audiology: another attempt to understand Clara’s hearing

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 anythingContinue reading “Audiology: another attempt to understand Clara’s hearing”

Happy 1st Lifeday Clara!

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!”

A febrile seizure in a one year old

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”