I hardly dare say it for fear of jinxing it….
but…
the Ciclosporin – the powerful immunosuppressive drug William is on – seems to be working. For the last few days his protein levels have come down to from 3+ to 2+ and now to 1+ on the dipsticks. Next stop negative we hope.
Although negative or trace [...]

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As part of this condition, my little son, my little five year old skinny boy, put on a quarter of his weight in fluid over the space of a few days in January. A quarter.
This is how his feet normally look:

This was him the day before he was admitted to hospital when I knew he [...]

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I want to write about something else. I want to write about, think about, something other than my son having FSGS. But I can’t.
It’s like a sort of grieving process. The first two weeks after he was diagnosed, Matthew and I were a mess. There was not simply the shock of being given such an [...]

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