Its Deaf Awareness Week!!!

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And what a way to kick it off… with a new Audiology Consultant visit for Millie…

Millie was, as only Millie can be, her own special self today.. stroppy, verbose yet uncommunicative, fidgety, wilful… oh, today she was delightful! Yet this new consultant cheerfully carried on what has been the most rigorous evaluation to date! I think I like this one.. a LOT!

She is very keen to get to the bottom of Millie’s hearing loss – and is very interested in looking at Moose as a whole person, not just a pair of malunctioning ears! This is wonderful – she got straight onto our geneticist and seems totally all over the fact that this may all be part of a bigger picture!

However – with every positive, comes a negative, or a hard choice.. and today we have had to choose whether or not to give Millie a CT scan of her head. Given that it currently seems that her hearing loss is conductive (not glue ear though!) it would make sense to actually see the structures that account for hearing – basically with a view to eventually moving to bone-anchored aids…. So – a simple choice… Then hear this – “this CT that she needs will expose her brain to as much radiation as 100 xrays” – not quite so straight forward any more! f I suggested XRaying my 5 year old 100 times people would quite rightly think I was crackers…

So what to do… we do (at some point) need to see inside her head! We need to see if her sub-mucosal cleft needs fixing, we need to see her ear bones… BUT.. maybe not now!

So today I have chosen not to know more.. her new radio aids are really working, so there is no need to change the style of aid right now. We may need to in future – and thats when we will CT her head – but right now – Less seems to be the right choice.

Crazy… but if you had asked me a year ago if knowing why Millie was deaf was important – the answer would have been a resounding YES. But actually – knowing the “why” isnt as vital as I thought. Millie is deaf – knowing why wont make any positive difference to her prognosis RIGHT NOW – but it does expose a little girl to a lot of radiation – so for now – we are parking the scan – and Millie won’t be glowing in the dark this week!!

On another note… there are yet more cakes a baking… Parkrun did an awesome job of eating cake on Saturday (and added £150 into the pot!) – and Garden Fields school footy will be eating for the NDCS on weds too!!

So back to baking (it should really be biking!!)

Click the link!!

http://www.justgiving.com/Christina-Smith13

 

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