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Old Aug 17th, 2015, 20:14 PM   11
SoBlessedMama
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I'm sorry ladies --I know it is a lot to absorb. I also had very healthy, routine pregnancies. The big shocker for us is that the boys' losses are genetic. And my husband and I both have perfectly normal hearing.

I know it is a lot, and I know it is hard and is a process to accept it. But I promise, it does get easier.

I really appreciate you all sharing your stories--and Deafgal, it is SO encouraging to hear of someone "on the other side" of this who has lived a successful and happy life. It makes me hopeful and excited for what my boys will be able to do. : )



 
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Old Aug 17th, 2015, 20:30 PM   12
deafgal01
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There are more success stories out there. I am studying for a masters degree. I know I have heard stories of others who have gotten jobs in the NASA field and other places. So the happy ending is out there and it will happen for all your children. The challenges will be temporary and these are only small bumps they have to jump over. Just believe in them and let them amaze you with everything they are able to do!



 
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Old Aug 17th, 2015, 21:44 PM   13
SoBlessedMama
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Quote:
Originally Posted by deafgal01 View Post
There are more success stories out there. I am studying for a masters degree. I know I have heard stories of others who have gotten jobs in the NASA field and other places. So the happy ending is out there and it will happen for all your children. The challenges will be temporary and these are only small bumps they have to jump over. Just believe in them and let them amaze you with everything they are able to do!
This brought tears to my eyes, and absolutely made my night. Thank you! : )



 
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Old Aug 18th, 2015, 01:09 AM   14
mummyruston
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Thank you deaf gal. Your story and many others I'm reading about gives me hope for my son to fulfil his dreams and of course ours for him to be happy.

I knew very little (and still do) about hearing loss and instantly thought of deaf communities who do not speak and sign only for communication. So my mind instantly thought of all the barriers and obstacles in life - not appreciating that many deaf people like yourself go on to lead very mainstream lives and achieve more than many hearing people.



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Old Aug 18th, 2015, 10:43 AM   15
2lovelyboys
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Yes I'm uk (West Midlands). I've had a tough time with appointments due to waiting lists and holidays. I've met my local sensory support worker but the group with other mums and children has been closed over summer, I also want to see happy childrens running around with the same problem and see a cochlear implant.

I also try not to cry infront of my older son, also I missed all the fun of having a newborn, I was struggling, staying in and hiding from the world, that is time I will never have back, so now I stay positive and keep busy, it's still sad and I worry lots but I'm getting on with life and enjoying my boys.



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Old Aug 18th, 2015, 15:58 PM   16
mummyruston
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Hey I'm from the Mids too! Sutton Coldfield...I've contacted both Walsall & Birmingham branches of Childrens Deaf Society but no reply as of yet and noticed there is a family day in September at the Botanical Gardens which I've enquires about.

I've yet to meet my sensory loss worker as every time she calls I'm out with my daughter at preschool or park or something and never hear the phone!

What hospital are you under?



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Old Aug 18th, 2015, 22:47 PM   17
2lovelyboys
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Our sensory support worker came to our house and was flexible with times so hopefully yours will soon, they just answer questions you may have, I've found a lot of the early apts have been more focused on us coming to terms with it instead of my boy, almost like me leading conversations but it's then difficult to know the correct questions! I'm under coventry hospital but the cochlear implant assessment will be birmingham childrens hospital,

I hope the ndcs get back to you ASAP I've not looked in to that just waiting on my local group.



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Old Aug 19th, 2015, 02:23 AM   18
mummyruston
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Quote:
Originally Posted by 2lovelyboys View Post
Our sensory support worker came to our house and was flexible with times so hopefully yours will soon, they just answer questions you may have, I've found a lot of the early apts have been more focused on us coming to terms with it instead of my boy, almost like me leading conversations but it's then difficult to know the correct questions! I'm under coventry hospital but the cochlear implant assessment will be birmingham childrens hospital,

I hope the ndcs get back to you ASAP I've not looked in to that just waiting on my local group.
How is your little man adjusting with aids? Are you noticing he's reacting to sounds now? How are you finding inserting them and taking them out so often based on his age and sleeping?

Are you considering cochlear implants already or just been advised of them?



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Old Aug 19th, 2015, 05:52 AM   19
2lovelyboys
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Mummyruston:

I was hoping you wouldn't ask about the hearing aids! It's really easy putting them in and out, But they do fall out lots as he can't support his own head so they rub off in his baby chairs car seat etc although he isn't bothered about them at all, there is a lot of feedback due to this as the microphone touches things or you when you cuddle them, it will be easier when they are older and support their own head.

I haven't noticed any improvement but it's still early days they ask if you want a referral it's a long assessment period 6 + months it doesn't mean you have to have them after it, my boys nearly 3 months and I'm not sure how long the waiting list is!

Your experience will be different it's hard to tell anything at this age and my boy hasn't registered any sound up to 85 decibels. There are some lovely YouTube videos of baby's hearing with hearing aids so stay positive!



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Old Aug 19th, 2015, 07:04 AM   20
mummyruston
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We're kind of in the same situation really. He's severe to profound - and out fitting is on Monday. I'm hoping he registers some hearing like those lovely videos you have mentioned as it really does give me hope when I see them.

Like you though I have concerns about them staying in, and sleeping, feeding etc. my audiologist said when cuddling / feeding just have the upright one in and swap etc as I asked those questions.

Hopefully for both of us there will be some good news and they'll become second nature like a pair of glasses on a child.

I didn't realise there was a huge waiting list! I will speak to my ENT specialist and ask about it too. I know they're expensive so no wonder there's a huge list but if I'm honest I didn't realise there would be such a demand! I thought it was be very few and far between



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