this biliary atresia experience

waking up at home

Rose leaving hospital after 9 and a half months' continuous hospitalization

Some of the nurses on shift for Rose's last day in hospital. The party lasted all afternoon long.

Rose in the arms of her paediatric hepatologist - the wonderful conductor of the enormous "orchestra" working to heal Rose. We love this brilliant woman.

Rose has another farewell session with a favourite nurse. He gave her an inscribed copy of the wonderful Pat Hutchins book " Rosie's Walk ". Boy, does that tale parallel our Rosie's Walk!

A long journey with this exceptional nurse. She's the first nurse we encountered on the ward last September when Rose began her series of admissions for liver disease. Rose spoke her name shortly after learning to say Mum and Dad. We have grown very close.

A snuggle with a favourite nurse

A story on Nan's lap Have I mentioned that one of the complications of liver disease is an inability to absorb Vitamin D? This deficiency in the vitamin can lead to brittle bones. In Rose's case, not only is she vitamin D deficient, but she has been too ill during her life to bear any weight through her bones. A recipe for super-weak bones. To cut a long story short, Rose's femur was accidentally broken this week. It happened in Radiology, nobody's fault , in the presence of my mother, poor thing, who was doing one of her twice-weekly overnight stints with Rose. By the way, we wouldn't have coped nearly so well with Rose's illness and recovery without the herculean backup of my parents. It is fitting that they were present at Rose's birth. Since the moment she emerged into the world they have accompanied our little family at every step. After Rose returned to the ward from ICU, my Mum began doing regular overnight stints with Rose. This has had many ef...

How do we find the words to thank complete strangers (and anonymous friends) who, upon hearing of our broken-down washing machine, have chipped in to buy us a new one? The kindness in this community seems boundless.