Monday morning  – we had a lovely evening with all of us home together last night. Robert brought Jamie back from Betchworth just as we were returning from a short visit to St Mary’s. So our little family had supper together. Isita wanted to stay sitting on the sofa, so we made the low stool in the sitting room into a table . When they finished eating the children zapped each other with little space guns that Jamie’s cousins had given him. Then bath and bed.

Of course, it is normality with a difference. Supper in the sitting room. Isita sleeping with me and Marta in the bottom bunk. But the daily routine has never seemed so precious.

Now we are preparing and bracing ourselves. Yesterday at St Mary’s we dropped of a jerry can with 24 hours of Isita’s wee – which the doctors will even now be analysing. The wonderful Australian doctor Jess told Isita about kangaroos and koalas as she took out the drip in her arm. Isita was a bit worried about her blood coming out. ‘We’ve all got these blue things in our arms’ said Jess, flexing her fist to make hers stand out. ‘You mean veins?’ asked Isita. We love the way that nothing escapes her sharp little brain.

Isita is booked into the Safari Ward at Great Ormond Street Hospital  – GOSH.  As we said goodbye to St Mary’s for the time being, they gave us a sheaf of reports and the recommendation letter, not easy reading in any respect.

Coming back from dropping of Jamie at school this morning, our friend Felicia gave some wonderful advice about not letting ourselves become overwhelmed with all the possibilities which the doctors have to consider, and above all to stay away from the internet. That way madness lies. We must take each day as it comes, get second opinions and take good notes.

We are greatly supported by everyone’s offers of help, messages of support and prayers.