KidneyKid

My little boy has FSGS, a rare and devastating kidney disease, and it has had a massive impact on our lives:

Looks can be deceiving

kidney bean sculpture

From the outside, you might be hard-pushed to realise my son is ill. On the days when he is well he can pass for any healthy child. What you won’t see is him come home and collapse with exhaustion on the sofa after school. What you won’t see is him too sick to want to [...]

Read more…

Hospital, in two acts

Thumbnail image for Hospital, in two acts

It’s been a bit of a week here so I am revisiting this post which is quite timely. ******** There is a dichotomy to hospital visits when William is sick. There is the rising fever, the increasing lethargy or the developing complications, the few hours where I have an increasing sense of worry, developing into [...]

Read more…

Grateful for this

We’re back from the hospital, a routine appointment, always fun in half term when I have to drag all the children there with me. There’s something mesmerising about watching four children run in four different directions in a dangerous place, knowing you might as well do nothing so as not to show favouritism about one [...]

Read more…

Why I ask you to vaccinate your child

Thumbnail image for Why I ask you to vaccinate your child

The side of vaccination you may not have thought about.

Read more…

Remission

We got lab results back today and my boy is officially in (medicated) remission! (If it seems like you have read this before, the last one didn’t last.) His blood results are looking fab. His albumin is still a bit low (although higher than it has ever been) and his cholesterol is still too high [...]

Read more…

Counseling

On Friday we went for family counselling. I could stop there and leave that loaded sentence to show how crappy things have really become round here. But there’s a reason I blog anonymously and it’s so I can share with you the, err, let’s call it grittier shall we, side of life. Basically, I’m everything [...]

Read more…