From the monthly archives:

April 2009

My love/hate for Ciclosporin. But at this point mostly love.

April 27, 2009

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 [...]

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Weight gain

April 23, 2009

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 [...]

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February 20th

April 21, 2009

Everyone has days in their life that they will remember with startling, painful clarity. For us, that day was February 20th. Until that date we were having a pretty wonderful few months. The boys were thriving -  all of them (if you don’t count William’s episode of Nephrotic Syndrome after the New Year). Harry was [...]

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When the future won’t be quite what you hoped it would be

April 13, 2009

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 [...]

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Ten ways to keep your child’s daily salt intake down

April 1, 2009

As part of William’s illness he is on a low-salt diet. At first I took this to mean a no-added salt diet, but when I added up all the salt he was consuming in a day we realised he – and all the children – were eating well over their daily recommended allowance. Crap mum [...]

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