Any parents who have children with hearing loss

[2lovelyboys]

Don't worry about using the hearing aids they are easy, i don't take them out but if they fall out when breastfeeding or sleeping and I can't just pop it back in I wait and pop it on after, it will become normal.

There might not be a waiting list at all but the assessment takes a long time we haven't had much luck with apts, yours seems to be quicker so you may choose to wait and see how you get on with the hearing aids.

 

[SoBlessedMama]

It really does become second nature so quickly --try not to worry too much at first. It took me a good five minutes to put the baby's aids in when we first got them, and now it takes ten seconds, and that's as I'm chasing him because he's crawling away lol.

As far as nap time, etc, it definitely creates a feedback issue. If he's napping where we can see him, I just pop the batteries, but don't actually remove the aid. (I wouldn't do this when he was out of sight, due to the choking hazard.)

But it really does become an easy, almost thoughtless task very quickly. Something that helped us, especially at first, was using Otoferm creme. It kind of lubricates the mould, which makes it easier to put in, and it also creates a seal to cut out feedback.

I really wish I could just offer up loads of hugs--it seems so intimidating and daunting at first, but it really isn't. (And our little guy is severe to profound, and tests out normal with the hearing aids. I hope your experiences are just as great!!!)

The YouTube videos are phenomenal, and made me feel SO much better before we went in. And then my baby almost cried when he got his. But you could tell that it was kind of a whimper of, "WHAT is happening?" and within the hour he was laughing and cooing right back at us. So if your first time doesn't look like a YouTube video, don't worry, ours didn't either. : )

 

[mummyruston]

SoBlessedMama thanks for sharing your experience and your 'first time' with us. I'm choosing not to film because of that very reason and would hate to be so disheartened if he wasn't full of smiles when we filmed him.

Do you know if your little guy will be attending mainstream nurseries / kindy (?) etc?

 

[deafgal01]

I've always been curious about the babies and kids first time "hearing" with hearing aids or cochlear implants. I'm not fond of those videos myself because I worry that they paint a "false" picture of hope for parents but I do wonder what my first time hearing with hearing aids was like. My mom doesn't remember that moment so I don't really have a way to know what that experience was like for my family.

 

[SoBlessedMama]

SoBlessedMama thanks for sharing your experience and your 'first time' with us. I'm choosing not to film because of that very reason and would hate to be so disheartened if he wasn't full of smiles when we filmed him.

Do you know if your little guy will be attending mainstream nurseries / kindy (?) etc?

I completely understand!! I filmed because my husband was actually out of the country on a school trip and couldn't be with us.

Our oldest is in mainstream kindergarten and is doing wonderfully! : )

 

[mummyruston]

@Deafgal - do you wish your mum had filmed? Would you want to witness the experience good or bad?

I'm in two minds because I also think some of the YouTube films give false hope because not all children benefits and babies might not show a reaction yet are hearing etc.

But since youve just said that it makes me think I should film / photograph / document the experience in some way...

@ soblessedmama glad to read your eldest is doing really well. I really can't wait to meet people and share their experiences and most of all witness for myself many little ones enjoying a "normal life" with the wonders of technology.

 

[deafgal01]

Sometimes I wish my mom had filmed it so I could see it myself what my reaction was since she can't remember what that was like.

If she did film it, I would want it to be private (like a home video type) not posted for public to see (unlisted) for my own viewing later.

 

[SoBlessedMama]

Mummyruston, I don't know why I also didn't mention, especially since this is more applicable to your little guy--our baby (10 months) is right on track developmentally. He babbles all the speech sounds, and says hi, bye-bye, dada, and Deh-Deh (brother, Denny.) And he has severe loss in his right ear, and severe to profound in his left.

There is definitely hope. : )

 

[mummyruston]

Thank you deafgal - I might film it and if there's a positive or obvious reaction I will keep for his viewing when older. If not I can always delete and film a more positive early experience that is more obvious.

@soblessedmama I'm really hoping we have the same journey as yourself and have predominantly a really happy guy who can experience what his hearing sister can do such as dance and sing and chat away etc.

 

[Misstrouble19]

mine did suffer from glue ear got hospital appointment on the 18th sept

 

[horseybird]

Hello everyone, really sorry for delayed reply - I had password issues.

So here is our update. The cause of Izzy hearing loss is called Pendreds Syndrome añd it's genetic. This is almost a relief as is obviously just one of thôse things and there was nothing that we could have done to prevent it.

She is 7 months still wearing hearing aids and about to have more tests. Unfortunately she could lose all her hearing but a specialist we have met said she would do well with Cochlear and all his patients have gone on to develop normal speech. We have been told she maybe dełayed but so far we are hitting all our physical milestones earlier than my eldest daughter! Her babbling is on track but some sounds we have yet to hear "D" "F" "I" and a few more.

But we are positive. She is so happy, as a family we are learning sign and she can wave a bit and has started to "hand babble " so far everyone I speak to tells me learning sign will help her speech. We are open about it as we feel then people can communicate with her better. I direct them to speak to her face and attract her attention. So far we have had no negativity really just acceptance. I still feel sad every now and then but much happier than the first few months. If this applys to you then hang in there and enjoy your beautiful kids xxx

 

[horseybird]

Forgot to add - we have been advised to take regular little videos when your baby is vocalising. This is so you can show medical/health professionals your progress.

We ve noticed that teething, illness tends to make her quieter. This is also true of when she is trying to focus on physical milestones. Think hearing children do this too though but it's good to know. Xxxx

 

[mummyruston]

Thank you horsey bird for your update and pleased to hear your little girl is getting the attention and assessment she deserves.
X

 

[SoBlessedMama]

HB, that's a wonderful update! I'm so glad everything is going well for your little girl.

Davis was a little behind in speech at 7 months, but now at 10, he is completely on track. (He babbles non-stop, and has 3-4 words down consistent.) I'm sure she will get there. : ) It sounds like she is making amazing progress!!

 

[Mrs. AJ]

Hi everyone. Deafgal pointed me to this thread. My daugter Allison is 2 1/2 and was born with profound bilateral hearing loss. She was aided from 6 months - 1 year and then had surgery for cochlear implants. She attends a todder program for deaf children that focused on oral language and we also sign, so more total communication approach I guess. I didn't film her activation with cochlear implants or hearing aids. With the hearing aids we didn't expect her to have any reaction, and she didnt, they didn't do much for her. With the cochlear implants, I wanted to be 100% present rather than focusing on filming and the audiologist actually discouraged filming for that reason though obviously a personal choice. It was a pretty rough time when we first got her diagnosis but she is doing great now and Deafgal has been a great resource to us!

 

[horseybird]

@ SoBlessedMama - that sounds amazing progress, you must be so happy xx

@Mrs AJ - hi there. I have feeling we may end up with a Cochlear. The CI specialist seems to want to answers in terms of her hearing test results by the time she is a year but the audiologists don't agree and say it takes longer to build a picture of her hearing and we won't know until she is 2. Did the implants make a big difference ?

Xx

 

[Mrs. AJ]

The implants have made a huge difference! She was born with profound loss, no measurable hearing at all. With CIs she hears at 15-20d across frequencies both ears. She is still about 9 moByhalia behind in oral language (implanted the day before her first birthday) but progressing quickly now and gaining confidence daily. There are still challenges ahead, we have her IEP for preschool in the fall, but as she gains confidence so do i.

 

[2lovelyboys]

Thanks mrs AJ

My son is probably profound as he hasn't registered any hearing, It's nice to know your daughter is doing well, it's understandable they are behind, I'm guessing it's a hard challenge but bet your so proud of her.

 

[Mrs. AJ]

I'm extremely proud of her - she works super hard for every single word she learns and that is not lost on me. And every time I see her sing and dance I smile. And she is (mostly!) A super happy and very sweet and loving two year old, and that's what I'm most proud of. .

 

[mummyruston]

Ots great to read so many positive stories. I didn't film my sons hearing aid fitting as didn't want to have an unresponsive experience filmed for us to then relive the scene.

I will however document the day in his my first books as the audiologist did register sound on his formal record when they were testing the hearing aids for loud sounds and comfort levels. We believe the aids are helping but as he's only 6 wks old it's very tricky to say what benefit he's getting as he's asleep most of the day BUT I'm confident he can hear but watching him often when he's awake for reaction but nothing like the loud bell sound in audiology.

Our first support meeting is next week and peers/ toddler groups begin in September. I'm really looking forward to meeting others and witnessing babies and young children with aids / cochlear implants etc.

Out of curiosity - USA mums - how does your healthcare cover cochlear implant procedures? As it's very expensive at £40k (unsure in dollars).