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Opening Pandora’s box

Tomorrow is a strange day – tomorrow Littlest is going into hospital to have his first MRI

Part of me is desperate for us to have this scan and to find out exactly what is going on under the skin – to get a better idea of what is going on, to perhaps have some inkling of what is going on and how bad it really is (or even better that we are just making an awful fuss and actually there is very little wrong and we need to all just buck up) and more importantly to start to get everyone he needs together so we can come up with a plan to help him to walk, to help manage his pain

Another part of me is desperately scared – worried that we’ve muddled through sort of through the last 18 months and that once we know what is going on we will find ourselves on a slippery slope and that he will end up having to have horrible treatments that may or may not actually have any real benefit to him

Yes one of the benefits of having something relatively unusual is that the best people want to be involved with him, one of the downsides is that so little is known and there isn’t a clear path of treat or leave – at least we aren’t in the States where they seem incredibly keen to just amputate children like him

One thing that scares me is that we are opening Pandora’s Box and that I want us to have the information and to be fully involved in all the decisions – I suspect we are slightly tainted by the experiences with our midwives and consent but I worry that asking for more information, questioning what is being done and why has the potential to set us on another collision course.  I don’t want to deny him treatment but I really really don’t want him to be a laboratory mouse – tomorrow’s challenge is to find out what is being scanned (the appointment letter didn’t make it totally clear) and to get a copy of the images (we’ve struggled with things being lost before) and the small matter of nil by mouth from 7.30, no breastmilk after 9.30 and how to keep an active, feisty little boy occupied during the inevitable hanging around when I can’t resort to breadsticks as distraction

Fingers crossed this is going to be a positive step towards a plan that works

Littlest at 18 months

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It is really strange how it feels both that Littlest has been here forever and as if the last 18 months have disappeared in a flash but here we are a year and a half on from his arrival

Over the last few months he has suddenly grown up and become a little boy […]

All change

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I’m not good with change and really not very good with not having everything sorted out around me and settled – at the moment I’m stuck in a vortex of change and it makes me feel on edge

EVERYTHING is changing

I’ve started a 6 month secondment at work – a new team which […]

So much going on

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There’s so much going on here – I need more hours, more time, less to do and despite all my best intentions, writing is still very much a stop / start thing around here

I really just need more time – work is crazy busy again which is good but does mean I feel […]

Fertility isn’t just another problem for women to solve

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Another day, another stick to beat up women – today’s is that we all need to be procreating before 30 in order to avoid a ‘fertility time bomb’ or at least that’s the view of a senior NHS doctor – that we have a fertility problem and women need to solve it

Consultant gynaecologist Professor […]

My breasts aren’t judging you

BF pics

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Apparently by posting breastfeeding pictures I have been judging those parents who aren’t breastfeeding – really?

My breasts can do several things but can they really judge you?

Are pictures of my saggy boobs and my chubby little boy that powerful?

Do they really leap out there into the cyber-world and shout abuse at […]

Yes he does have a lovely personality…

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One of the things on my to do list is to find a way to be able to settle on a few phrases to quickly explain what is going on with Littlest – I either brush things off with ‘oh he has a bit of a thing with his leg’ or jump into ‘he […]

The background & why I stopped blogging – part 2

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You can read the first part of this story here – it covers Littlest’s birth and what we believe were the triggers for Midwife One making an unfounded and malicious referral to social services about us – this part covers the aftermath, the long long fight we had to get an apology and a […]

The background & why I stopped blogging – part 1

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It is hard to know where to start really if I’m going to go back and explain all the things that have happened, to explain the background actions that have sapped my voice and my ability to write

The wrong approach is probably to just jump in but in the absence of a better plan […]

Just sit down and write

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Over the last few months I’ve found myself gradually disengaging from blogs and twitter, gradually stepping away from places where I felt too exposed and too vulnerable, unable to just sit down and write the words that were buzzing around my brain

It isn’t that I haven’t wanted to write – I’ve started hundreds […]

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