Any parents who have children with hearing loss

[2lovelyboys]

It's a long assessment process, he has hearing tests next month with the view for surgery in the summer when he's over 1, depends on waiting lists and cancelations in the uk, but we will get there!

So blessed, so glad your boys do well with HA's, you must be proud of them, once they learn to leave them in you don't notice them and it becomes second nature, I'm hoping it will be the same with ci's too!

 

[SoBlessedMama]

That's hard to wait, but I'm sure it will be well worth it!! I hope it flies by and he does really well!

Yes, there was definitely an adjustment period for the baby lol--but you're exactly right. Once he got used to wearing them, it is as simple as putting on a pair of glasses and forgetting about them. I'm sure CIs are very much the same way!!

Our five year old, on the other hand, absolutely adored them from the second they were put in his ears. I'm so thankful they've both done so well with them, and I still kick myself for not recognizing that our oldest needed help earlier. I was watching an old video of us at the park the other day, and it is glaringly obvious. : ( Of course hindsight is 20-20, but it still makes me angry at myself.

 

[SoBlessedMama]

Hi Ladies,
It has been a while since anyone has posted on this thread, but I thought one of you might have some insight.

We have been on vacation for the past 6 days. This morning, my oldest began to seem to have trouble hearing out of his right ear. We assumed it was the hearing aid, and waited until we got back to the hotel to check it. It's fine. But, he doesn't seem to be hearing much, if anything, out of his right ear. We are at Disneyworld, and have spent multiple days swimming in the ocean, as well as the pool, as well as riding park rides. He has complained a couple of times lately about feeling dizzy.

Since this was so sudden and odd, is there a good chance this is just fluid? What do I do? I called and left a message with his doctor, and I also emailed her. I am debating calling a doctor here in Orlando and seeing if we can fit him in.

I'm just terrified that his hearing has suddenly gotten worse. Any thoughts or experience?

 

[Mrs. AJ]

Could definitely be trapped fluid or even an ear infection, I'd try to get him in. Good luck!

 

[SoBlessedMama]

Thank you for the reply Mrs. AJ!! I'm really hoping and praying that's the case!!

 

[deafgal01]

Definitely follow up with the doctor.

 

[SoBlessedMama]

Thanks for the response, Deafgal. I spoke with his audiologist as well as his ENT specialist back at home today. They both agreed it sounds like just a jump in the progression of his hearing loss. He has no pain or fever, and it doesn't behave like an infection. He seemed slightly better today. We have an appointment with his specialists two days after we return home.

I'm sad to think it has probably progressed, even though I knew to expect it. But I'm also very thankful that a hearing aid tweak should have him right back on track in a few days. And if it does turn out to be fluid, even better. Thanks ladies!

 

[SoBlessedMama]

Well, we took little guy to the audiologist today, and his hearing loss in his right ear has progressed from severe to profound. They tweaked his hearing aid--he didn't like it at first, because amplification at that level sounds a bit wonky at first. But, as the day wore on, he adapted, and seems to be hearing fine now. Thank goodness his left ear is still stable, and that hearing aid is working perfectly.

Since he is classified as profound in that ear now, we will most likely be talking to his doctor about looking into a cochlear implant for that ear. We will probably put it off as long as that hearing aid is still working for him, but we will probably start taking steps in that direction. (I realize that is a lot of "probably"s.)

It makes me sad, but we knew this was probably where we were headed. And I am SO very thankful the technology exists to allow him to hear.

Any direct advice/experience about cochlear implants? The hearing aids were literally no adjustment/transition time for our oldest. I know CIs will be a different story. I'd love to hear positive stories of how that might go if we end up there. : )

 

[Mrs. AJ]

:Hugs:
My daughter has bilateral CIs. She was implanted the day before she turned one and is now 3yr 4 mos. She's done amazing. She had hearing aids for 6 Mos prior with very little response. Now booth tests about 20 dB across frequency. She works incredibly hard, and is doing amazing. Still lags behind in artic and some syntax but improves daily. Has some difficulty hearing in noisy environments.

 

[SoBlessedMama]

Thank you so much, Mrs. AJ! That is great to hear. : )

 

[deafgal01]

Kids with cochlear implants have great access to sounds now days. Just be sure to supplement with sign language (if they don't use it, that's ok - it's just a back up way to communicate in case of difficulties such as cochlear implants battery dies or etc.)

 

[Mrs. AJ]

I know at least a dozen kids with CIS through my daughter's school. There is a little girl like there who, like your son, recently had a significant decrease I'm hearing and is being implanted this summer - she's 5. She has used hearing aids since a young age. Some of these kids sign aND many dont. It's a personal experience and a personal decision. With use signs in the bath when Allison has no access to sound. And she's been using some with her swim instructor because it's hard for her to hear in that environment. She understands those but never signs back, she prefers to speak verbally and we follow that lead.

 

[SoBlessedMama]

Thank you so much, ladies--it really boosts me up to hear such great experiences.

The signing is a great idea, even if it is only ever used as a supplement. Bath time and swim time are two GREAT examples that we struggle with right now.

Our oldest is actually really adept at lip reading, (nothing we would count on--he just naturally picked it up before he got hearing aids) so as long as he watches us closely, he does well. I was actually shocked to figure out last week that the baby has also started to lip read--he had just woken up from a nap, so was not wearing his hearing aids. He sat up and looked at me, and I asked him a question. He nodded his head and answered. It is crazy what little ones are capable of. : )

 

[Mrs. AJ]

Yes, Allison can do that a little bit, too! Sometimes I do a double take because I'll think she must have CIs on. But usually she'll just point to her ears and say, "can't hear you!" And it's not like she relies on it as she can hear across the room with her head turned.

We use some signs in gymastics too as its hard for her to hear in thr gym. She always just repeats it back orally though It is amazing though what these kids can do, and such a huge spectrum of experiences. Every journey is unique and wonderful in its own wat, even with all the challenges.

 

[SoBlessedMama]

Hi ladies, just a quick update. Y'all might remember that we were looking into a cochlear implant for our 6 year old. The plan was to move toward surgery in June 2017. Well, we had his first appointment on the "surgery track" on December 13th--and his hearing has improved to the point that they no longer recommend surgery this summer!! He will likely need it in a few years, but it is such a huge relief knowing he can be a bit older, and have more of an opinion and a say.

This sounds kooky--but a few months ago, we started using helichrysum essential oil in both of our boys' ears. It is the only thing we have changed in their routine, and the only explanation I have for the improvement. Our two year old's hearing has also improved since beginning to use it, and he can now hear quite a bit without his hearing aids in, whereas before he could only hear very, very loud noises.

I am very much ignorant about natural remedies, but I stumbled across an article about this essential oil. My mom knows quite a bit about essential oils, and I had her order some for us. We will definitely keep using it. I'm not expecting any miracle, but it is great for ear health (not to mention it is handy for topical use for aches and pains) so why not keep using it, right? ; )

I just wanted to share an update, and also a good product you might want to check into for your little ones. I hope you're all doing really well, and had a great Christmas! : )

 

[CrazyMumma]

Hi all. Sorry I dropped off the face of the earth! I can't remember what I last posted so here's a general update

Elijah has confirmed Microtia Atresia, meaning his outer ear didn't develop fully and internally he doesn't appear to have an ear canal. They will do an MRI once he is older to see what the internal structure is, but it's likely that he is permanently Deaf in that ear. He was fitted with his BAHA hearing aide at 11 months old and is doing well. He doesn't really like wearing it but we get it on him as much as possible. He doesn't speak much - Dadda, verrry occasional Mama and Ooowa (shower). He has wonderful understanding though - can follow simple instructions (go get the ball, sit at the table etc) and signs very well too. Half the time he seems to understand so well when is isn't wearing his BAHA he doesn't appear to be a child with hearing loss at all! I hope all your babes are doing well!

 

[mummyruston]

I have completely forgot about this thread! My son is 18m old now. Implanted at 14m and is doing beyond brilliant!

His listening is amazing and his understand is great.

He's started saying words including 'o-pen' 'mama' 'baba! 'Mil' for milk and ith for teeth...

How things change in such a short space of time!!!

 

[deafgal01]

It's wonderful to hear that all of your babies are doing great!

 

[SoBlessedMama]

Wow, I kind of dropped off the planet! I'm not sure if any of you will even see this old thread, but just a quick update--after learning more about the structure of Denny's cochlea, (not fully formed--hearing likely to continue to degenerate in both ears) and the benefits of early implantation, we decided to move forward with surgery. He's actually in surgery as we speak.

I was a nervous wreck, but after we got the first update that all was going well, it felt like a weight lifted. Lots of people are covering our little guy with prayer this morning, and he has a world-renowned surgeon, so I am very optimistic that all is well and this is the first step in an incredible journey. : )

 

[deafgal01]

You'll have quite a bit of work ahead - identifying sounds once the implant is activated after surgery (after the healing period).

But yay for progress - it is nerve whacking. I can't imagine what you as a parent go through. Best of luck to your son and your family as they start on this journey with his new implant.