Category Archives: medical

It’s a weird coincidence I’m writing this on ‘Rare Diseases Day’. But Clara has added another string to her already medically complex bow: Auditory Neuropathy Spectrum Disorder. Auditory Neuropathy Spectrum Disorder is a hearing condition where the inner ear hears sounds normally but has trouble sending them to the brain for processing. It’s rare -ContinueContinue reading “Auditory Neuropathy Spectrum Disorder”

It’s been a quiet week on here, I’ve not posted much. You see the thing is, we are in a waiting game. We have been waiting to see if Clara’s gut will recover from her vaccinations. Her outputs have remained high since her jabs, a shame as leading up to her jabs she was wonderfullyContinueContinue reading “A waiting game”

When we were first told Clara would have immunisations at 8 weeks old it felt like AGES away. I’d heard scary things about these jabs – every mum who’d mentioned them told me she cried as much as her little one did. ‘What are they jabbing these babies with?!’ I wondered. In reality, and consideringContinueContinue reading “Week 8: Vaccinations”

Well Week 8 has turned into a busy one! So many blog updates this week with progress. Today we were given a date for Clara’s next operation. It’s a big one, she’ll likely be in surgery all day, and it’s the next huge milestone. On the 8th March, 2018, Clara will have her bowel reconnected.ContinueContinue reading “Week 8: Planning for bowel reconnection surgery”

Clara has been having a 2 hour break from her TPN for just a week now. Despite this, yesterday her gastric consultant decided to up her time off her TPN to 4 hours. 4 hours!! 4 hours a day.. Of freedom!! As Clara’s blood sugar levels had always remained stable, the team said I didn’tContinueContinue reading “Week 8: TPN breaks and hearing tests”