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Old Jun 2nd, 2015, 08:16 AM   1
horseybird
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Any parents who have children with hearing loss


Hi I have a 5 month old who was born with bilateral severe sensorineural hearing loss. Her paedtrician phoned us today to say the results of her MRI show she has enlarged vestibular aqueducts, further testing needed to see if there are associated problems.

So many questions! Apparently this sometimes means the hearing loss can get worse. Anyone else in this boat? X



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Old Jun 11th, 2015, 09:44 AM   2
SoBlessedMama
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Hey HB--I know we've chatted on the other thread, but I just want you to know I'm thinking of you.

I completely understand the worry. We are taking our boys to a hearing impaired clinic their hospital hosts next week. We will have the option of meeting with geneticists and trying to determine if their hearing losses are progressive or not. I actually kind of assume, especially for the older one, that the losses are progressive. But the way I look at it is 1) they are both extremely successful using the hearing aids they have right now 2) both have mild-moderate and moderate-severe losses, so there is still wiggle room with more powerful aids if their losses do progress 3) if they progress to profound losses, the vast majority of people are great cochlear implant candidates and 4) if their losses do progress, who knows what technology will be available 10 years from now?

I know that may not be especially helpful, but I feel like we are in really similar situations, and I want you to know I'm here if you ever need to talk. : )



 
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Old Aug 15th, 2015, 18:35 PM   3
deafgal01
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Have you thought about maybe using sign language to make communication easier?



 
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Old Aug 16th, 2015, 16:09 PM   4
mummyruston
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Hi, my answer is yes to your post but my son is 4weeks old and I've only just found out he has severe / profound hearing loss and will be fitted with hearing aids on 24th with our first ENT appt on the 2nd.

So I'm following this thread more so for information as I can't help at all with your query but do want to know more about my sons affliction and what that means and find out other people's journeys.



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Old Aug 16th, 2015, 23:11 PM   5
SoBlessedMama
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Deafgal--we discussed sign language, and we actually used SOME sign with both boys (even before we knew they had hearing loss.) Thankfully, they have both adapted wonderfully to the hearing aids, and with the aids, they both test out at normal hearing. I think signing may be an option in the future, just to enrich, but we aren't currently working on it.

Mummyruston--big hugs, I know that can be hard to accept. The great news is that your little guy will become accustomed to the hearing aids and know no different since he's being fitted at such a young age. That's wonderful! Our baby was fitted at 5 months, and our oldest was 5 years. Like I just said, they have both adapted wonderfully to wearing them. The 5 year old absolutely loved them immediately. The baby went through a phase of trying to yank them out and eat them lol. We had to keep a hat on him for several months, and now he acts like he doesn't even know they're there.

We are still so new to this journey, but I can tell you that after the initial shock, it has been an unbelievably positive blessing. It is hard, and I know there will be ups and downs. (The 5 year old starts kindergarten tomorrow, and I'm up worrying and praying no one makes fun of him for wearing them, etc.) But to see their little world's open up has been astounding. And now we are to the point where it is as simple as putting on a pair of glasses in the morning. I hope you have a wonderful experience with your little guy--like I said, I'm totally new to this as well, but I'm here if you ever need to talk!



 
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Old Aug 17th, 2015, 09:05 AM   6
2lovelyboys
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Just registered on here as I'm in the same situation.

My son is severe/profoundly deaf, diagnosed at 7weeks old hearing aids at 9weeks he is now 10 weeks. Routine preg, good labour no history so it's been very hard to get my head around, still having up and down days, it's so hard not knowing how he will be in the future and the worry and sadness is so strong, I'm not much help with answers but kind of understand what people are going through.

Mummyruston. How are you feeling? Early diagnosis is good and you have apts quickly just make sure you enjoy your little one and look after yourself.



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Old Aug 17th, 2015, 11:55 AM   7
mummyruston
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Soblessedmama / thank you for sharing your experience and great to read your boys are doing well.

2lovelyboys - my pregnancy and birth are like yours. Very straight forward, no concerns, I'm a healthy person and BMI normal, ate well, kept active, no alcohol, no drugs etc and followed guidelines with foods. Like you I have very up and down days and some times I just cry and fear for my sons future and worry about the unknown. I'm just petrified of the hearing aid outcome and hoping he will get some hearing and normality. I also hope that because we have no deafness in our families and no obvious causes there's nothing else



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Old Aug 17th, 2015, 13:44 PM   8
2lovelyboys
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As soblessedmama says atleast there are hearing aids/ implants available,

I also did everything correctly it was such a shock which makes it harder. I now cry less, I've stopped looking too far in the future and just doing my best to care for him now, I have a 2.5 year old he keeps me distracted.



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Old Aug 17th, 2015, 15:17 PM   9
deafgal01
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I'm happy you are all getting the news and support more early on compared to my family's experience of not getting me diagnosed with hearing loss until I was already past the age of 2 even though my mom pointed out to dr that she thought I was having trouble hearing.

And it is amazing to see you all connect with others in similar shoes and supporting each other in this new journey.



 
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Old Aug 17th, 2015, 15:39 PM   10
mummyruston
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@2lovelyboys

Are you in the UK? Our audiologist has referred us to sensory loss support team (a little like health visiting team) and we've also reached out to our local branch of the National Childrens Deaf Society too.

Hopefully the support of others and being around other families with deaf children should help to ease the pain but crying on and off is very hard. I try to not cry in front of my 3.5yo DD but I can't help it but she's very good bless her and the other day went and got me tissue and said is ok mummy I will make you smile and started singing and dancing.

I just hope on the 24th my boy responds with hearing aids and he can have a relatively normal life and enjoy the simplest of things like music and be comforted by my voice.



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