Re: New to the group (Jody/cochlear implant)

[Guest guest]

Hi DeAnn,

Also, Jody and Maximo.

I'm new to this great group (~2weeks). I'm a Brazilian grandfather

of a very cute little girl called na, who is 11 mo. and

CHARGEr.

She had the Ductus Arteriosus closed, a week after she was born and

corretion of Bilateral Choanal Atresia two weeks later.

She still needs heart surgery to close an ASD.

I've been reading the leatest e-mails about cochlear implant,

following the e-mail of Maximo a few days ago asking for help for

a.

We are also thinking of doing the implant for na. There are 3

clinics that will do it in Brasil, but the waiting list are long.

She has profound hearing loss in both ears. We are waiting for a

appointment for a new evaluation at one of the clinics to she if she

applies for the implant or not.

In the meantime we are trying to keep the hearing aid in her, but she

found out she can take them out easily. So the minute we put it on,

she grabs and pull it out. Usually she will put it in her mouth and

suck it.

So, my question to you all who had experience with hearing aids with

small children. How to keep them leave it in place? Is there

anything that can help?

Also she will need to have a surgery to correct her lateral

Craniostenosis (premature fusion of cranial sutures). Do any of you

had any experience with this surgery?

Thank you all,

o Machado, grandad of na, 11 mo., CHARgE

> Jody, thanks for the info. After reading your letter, it makes me

think that

> I better keep that hearing aid in her ear, just in case she is able

to hear

> sounds around her even though she isn't startling or turning to

sound. It's

> been all so confusing and frustrating for us as well. I would

appreciate an

> update in June when you know more. Thank you,

>

> DeAnn, Mom to Austin 8, 5, and CHARgE Whitney 9 months

>

>

>

[Guest guest]

Hi DeAnn,

Also, Jody and Maximo.

I'm new to this great group (~2weeks). I'm a Brazilian grandfather

of a very cute little girl called na, who is 11 mo. and

CHARGEr.

She had the Ductus Arteriosus closed, a week after she was born and

corretion of Bilateral Choanal Atresia two weeks later.

She still needs heart surgery to close an ASD.

I've been reading the leatest e-mails about cochlear implant,

following the e-mail of Maximo a few days ago asking for help for

a.

We are also thinking of doing the implant for na. There are 3

clinics that will do it in Brasil, but the waiting list are long.

She has profound hearing loss in both ears. We are waiting for a

appointment for a new evaluation at one of the clinics to she if she

applies for the implant or not.

In the meantime we are trying to keep the hearing aid in her, but she

found out she can take them out easily. So the minute we put it on,

she grabs and pull it out. Usually she will put it in her mouth and

suck it.

So, my question to you all who had experience with hearing aids with

small children. How to keep them leave it in place? Is there

anything that can help?

Also she will need to have a surgery to correct her lateral

Craniostenosis (premature fusion of cranial sutures). Do any of you

had any experience with this surgery?

Thank you all,

o Machado, grandad of na, 11 mo., CHARgE

> Jody, thanks for the info. After reading your letter, it makes me

think that

> I better keep that hearing aid in her ear, just in case she is able

to hear

> sounds around her even though she isn't startling or turning to

sound. It's

> been all so confusing and frustrating for us as well. I would

appreciate an

> update in June when you know more. Thank you,

>

> DeAnn, Mom to Austin 8, 5, and CHARgE Whitney 9 months

>

>

>

[Guest guest]

Debra,

I think we could try the stretchy bands. She uses it, but only when

she goes out, to look nice. I think we can try to make her get used

to using it for a long time and then put the aids. I'll tell you if

it worked.

Thank you,

o

> o,

>

> We used stretchy head bands, or using a hat. We would put either

on for

> about a couple of weeks or so to get used to wearing it and then

use the aid with

> it. That way they don't know the difference. Hope it helps.

>

> Debra

>

>

>

[Guest guest]

Debra,

I think we could try the stretchy bands. She uses it, but only when

she goes out, to look nice. I think we can try to make her get used

to using it for a long time and then put the aids. I'll tell you if

it worked.

Thank you,

o

> o,

>

> We used stretchy head bands, or using a hat. We would put either

on for

> about a couple of weeks or so to get used to wearing it and then

use the aid with

> it. That way they don't know the difference. Hope it helps.

>

> Debra

>

>

>