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Old Aug 25th, 2015, 08:13 AM   31
horseybird
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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 ad it's genetic. This is almost a relief as is obviously just one of thse 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



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Old Aug 25th, 2015, 08:20 AM   32
horseybird
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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



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Old Aug 25th, 2015, 08:25 AM   33
mummyruston
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Thank you horsey bird for your update and pleased to hear your little girl is getting the attention and assessment she deserves.
X



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Old Aug 25th, 2015, 16:06 PM   34
SoBlessedMama
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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!!



 
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Old Aug 25th, 2015, 16:22 PM   35
Mrs. AJ
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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!



 
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Old Aug 26th, 2015, 07:38 AM   36
horseybird
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@ 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



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Old Aug 26th, 2015, 08:12 AM   37
Mrs. AJ
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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.



 
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Old Aug 26th, 2015, 11:20 AM   38
2lovelyboys
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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.



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Old Aug 26th, 2015, 11:26 AM   39
Mrs. AJ
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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. .



 
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Old Aug 26th, 2015, 11:35 AM   40
mummyruston
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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).



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