I am beyond proud of what we’ve achieved with CJ’s Mission so far, but I felt deep down something bigger still had to come. Real change HAS to be made. So I’ve made CJ’s Mission a bit more of an actual thing. CJ’s Mission is now a nonprofit organisation with a purpose of supporting, empowering, … Continue reading C’s Mission
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 where … Continue reading Gastroenteritis…again.
For us, it's not been easy. But the story doesn't begin there. Since Clara's last bout of D&V which ended her in hospital for a day early March, her stools have never quite recovered. Her dirty nappies are looser resulting in 1-2 outfit changes a day. Uncomfortable for her, exhausting for us. It doesn't sound … Continue reading Switching from formula to Oatly Barista (dairy free milk)
Since Clara turned one I'd been meaning to check when her next review was with her community paediatrician. The role of community paeds with Clara is to check she's meeting her development milestones, considering the start in life she had - both in terms of exposure to hard medical drugs, time spent restricted in a … Continue reading Community paediatrics development review
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 book … Continue reading Hearing, talking, signing – Auditory Neuropathy at 14 months old
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!