….and Why We’re So Grateful She Stayed in ICU. Saturday 22/11/25 Maya stayed stable throughout the Friday night, and she’s managed all of this without sedation, which feels like a small blessing in the middle of everything. Terry and I kept to the two-hours-on, two-hours-off leg splint routine, and every time they came off, I massaged all her limbs and did the passive physio the team taught me. Her muscles are wasting away now, and it breaks my heart — but if these little exe

I left ICU on Thursday night, close to 11pm, after a long, reassuring chat with Maya’s night nurse. I tried to find comfort in knowing she would be watching over my baby girl — and she really did. Friday morning was the first time in a very long time that I slept without interruption… even if it was only about four hours. I spent the rest of the morning doing admin on my phone — cancelling and postponing all of Maya’s outpatient appointments: SALT, physiotherapy, her annual E

Thursday 20th November 2025 Can you imagine how daunting it felt to sit in a meeting room inside PICU, alone, with four clinicians — Maya’s consultant, the research doctor, the ICU doctor and her PICU nurse. Four walls that have heard far too many heartbreaking conversations about children. After a few minutes of niceties, the consultant’s face turned serious. My heart was racing. She summarised everything from the CAR-T cell infusion on Tuesday 4th November, right up to Maya