Posts made in October, 2012

I kicked a doctor off May’s team

Posted on Oct 30, 2012 | 7 comments

I kicked a doctor off May’s team

In an interesting follow-up to yesterday’s post, here is the email I sent to May’s team this week following her annual medical review on Wednesday: Hi everyone, Thank you for meeting with May and I on Wednesday (and a very noisy Ieuan). Thank you, ** for drawing up the care plan. It seems fine to me. I need to make a somewhat awkward request, that I hope you won’t find too uncomfortable to read. I was very uneasy with Dr. **’s professionalism yesterday. I realise her involvement with May is very limited, but I want to formally request that she does not deal with...

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If you had the chance to lecture 300 doctors, what would you say?

Posted on Oct 28, 2012 | 11 comments

If you had the chance to lecture 300 doctors, what would you say?

This month, I will address a conference of pediatricians in Hull, England. It will be the second time I’ve spoken at a conference, though the first time I was 23 and I delivered a paper on post-colonial literature. I can’t even remember the book I spoke on… so a very memorable speech then. One of my friends is a doctor  – several actually, but this particular one is organizing the conference and she asked me to come speak about May. In other words: she took a big risk on a friend of hers who, she knows, has a big mouth. I’ve spent several months thinking about...

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Should May use this medieval toileting device?

Posted on Oct 25, 2012 | 17 comments

Should May use this medieval toileting device?

It is not as we had hoped: 1. An attachment to the small toilet adjacent to her room. 2. Conveniently situated in a room, the bathroom preferably, rather than other her bedroom. 3. Compact in any way, or collapsible. 4. Flushable. Is attempting to get May to use the toilet worth dealing with this...

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Be selfish. Put your half-brained baby down!

Posted on Oct 21, 2012 | 5 comments

Be selfish. Put your half-brained baby down!

Life can be very tough with a disabled child. I do several appointments a week, often at hospitals – and these fill my days in a way I would never choose for myself. Parents of disabled children despair at their lack of time, money and love. These three things get set aside in the name of physio and medical assessments and working late into the evening once the kids are in bed. So, I say to you, parents, put your child down! Their life will not benefit from constant pressure towards progress and no fun time playing on their own with their toys. Leave them be, and even let them cry for...

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May vs The Hosptial, Part 2: The waiting game

Posted on Oct 17, 2012 | 3 comments

May vs The Hosptial, Part 2: The waiting game

A year ago, this week, a solicitor visited us to hear our version of the events leading to May’s brain damage. It was harrowing saying aloud all the moments that continue to torment me. All the more trying because I know it will, most likely, all be for naught. The process is long partially, I think, to put people off doing it. A year on and no further progress? Having to ask and then reask and then ask again when the hospital doesn’t provide all the documentation they should? These are not fun conversations, especially when you know that proving anything will be near impossible...

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