Thursday 18 September 2014

Every cloud has a silver lining.....

So on Tuesday we took a trip to the hospital....Nothing serious....Just a check on Ellie's hearing....We got to see the specialist....Well one of his assistants....Who I didn't think much of at all.....

Ellie was diagnosed with Auditory Neuropathy a few years ago.....A pretty rare type of hearing loss where the cochlea and all the ear seems to work but there is something wrong with how the nerves work....Basically all the ear works, the nerves going to the brain work there is just a loose connection somewhere in the middle!.....My girl really does have a screw loose....hehehe

You can read the full story and about last years appointment here.....

Last year Ellie was 95% deaf in her right ear.....We had a hearing test in April and Tuesday was result day.

The results were not good.....She has no hearing at all in her right ear now.....It's not all bad though her left ear has perfect hearing......

It may sound bad but Ellie is used to it. She has never had more than 5% hearing in her right ear and she copes well.....She's been like this since she was born so it is quite normal to her....

The specialist mentioned to us that they could do tests....A MRI scan to see where the nerves are not working and maybe find out why.....It only takes about 20 minutes & Ellie will be sedated and have to spend a night in hospital.....It would help with the research of the condition but the results would not make a difference to Ellie.....She would be a Guinea Pig.....I said NO! 

Yes it would be nice to help with the research but I'm not putting my girl through an unnecessary medical procedure! Sorry! She has had her fair share of hospital visits and stays with the problem with her eyes, ears and her heart.....If there was a chance they could restore the hearing I would have said yes but not just to aid their research.....

Hearing aids were mentioned again but the chances of them working are slim and they are a last resort.....They are only to be used if her good ear deteriorates but there is no sign of that happening at all as the nerve damage is only on the right side.....Phew!!

We did also find out the problem with her ears is connected to the problem with her eye.....She has Duane Syndrome.... It's only took them 7 years to realise this......lol Her right eye is affected and the muscles in it don't work properly....She can't move her eye outwards as far as it should be....Again it doesn't bother her in the slightest, she has perfect eye sight but nothing can be done about it...


It's not all bad though......

We were discharged from the hospital!! After seven years of at least two hospital trips a year to check on Ellie's ears we don't have to go to see the specialists again!!......There is nothing more they can or want to do.....

We have to go back once a year for hearing tests to check her good ear is still good but that's it....The appointments may even be changed to our local hospital I'm keeping my fingers crossed for that.....I hate the two hours there and two hours back journey.......Plus it means Ellie will miss one less school day a year at least.....Next year may be the year she gets 100% attendance!

So every cloud and all that.....

7 comments :

  1. Sounds as though Ellie has had a lot to cope with over the past few years. Happy to hear that she has finally been discharged from the hospital... I'm guessing this is a huge relief for you both x

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    1. She has but she's a trooper and takes it all in her stride....
      It is a huge relief as stupid as it sounds....It's taken her to become deaf for them to discharge us.
      Thanks x

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  2. Bless Ellie, kids are so resilient aren't they. Great news that she been discharged x

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  3. Indeed that is a silver lining and Ellie sounds like a little trooper. Have a great weekend, Mich x

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  4. Gosh I hope you can get more local appointments and I think you were right to say no to the MRI on this occasion. Who knows what medical marvels there will be in the future though, best wishes to all of you x

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  5. It's great news she has been discharged! Fingers crossed you will be able to get hearing tests in your local audiology department. I don't blame you for turning down the MRI, sounds like she's been through enough!
    We've had our fair share of hospital visits over the years and it does lighten the load so much when they are just on annual check ups/hearing tests. I have a 13 year old and an 11 year old who have never managed 100% attendance purely due to appointments! #pocolo

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  6. Poor Ellie, she has really been through the mill. I really think that, as her Mum, you know your gut on all of this. She really is a brave girl. Thank you for linking to PoCoLo :) x

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