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FSGS and Nephrotic Syndrome

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July 25, 2010

We are back home. It has been a long couple of weeks juggling hospital, family and the last weeks of school. I will be posting again as soon as I have had a minute to draw breath but I just wanted to let you know we were home and William is doing better. Thank you [...]

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Thoughts and prayers

July 22, 2010

Updated: William is still very very poorly. Thank you for all the messages xx We have been transferred to our regional hospital where William is in a serious condition. Please keep him in your thoughts and prayers.

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Hospital, in two acts

April 12, 2010
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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 ever-so-slight panic and when he is really poorly – as he has been this week – a sense of [...]

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Why I ask you to vaccinate your child

March 31, 2010
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It has been a bad few weeks for William. He’s been poorly off and (mostly) on for weeks now with one thing or another that he has picked up. His levels of immunity are quite low now because he is on a high dose of Ciclosporin (for those of you unfamiliar with his story this [...]

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Remission

February 19, 2010

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 [...]

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Counseling

February 1, 2010

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 [...]

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Trying to be the best parent I can be

November 10, 2009

Life is not going well at the moment. Instead of blogging, I have been attempting to take care of the problems in my family. Sometimes I go on the internet to google things like ‘how to discipline a child who doesn’t care about being disciplined’, ‘counselling for a child’ and other such things. I want [...]

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The best news since this whole sorry time started

September 16, 2009

My son has been leaking protein into his urine, scarring his kidneys, for the last nine months and probably longer than that too. He has managed a couple of days at zero or trace now and again in the last two or three months but it never lasted and he had a miserable summer holiday [...]

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