Re: new to group - my intro (long....)

[Guest guest]

At 09:47 PM 3/8/01 -0600, you wrote:

>Agh! Thank you for letting me know -- now I'm freaking out again.

>

>I'm in San , TX. Anyone know of a good pediatric audiologist here?

Oh, Meredith, please don't freak out! Honestly, you're a step ahead of the

game knowing that your daughter has a hearing loss at such a young age.

Take a deep breath...just the fact that you're here shows that you've got

what it's going to take to get her what she needs.

As a couple of other people have said, there are a few people here from

Texas, so you might get lucky in finding someone who can help you get a

definitive audiogram and steps on the right track. :-)

[Guest guest]

> I'm in San , TX. Anyone know of a good pediatric audiologist here?

We're in San too! Who did the last tests?

Kay

[Guest guest]

Tests were done at Wilford Hall Medical Center.(My husband is military). We

were then referred out to Audicles for hearing aids. Both the Wilford Hall

ENT and the audiologist at Audicles told me that they could not get an

accurate ABR for an infant of this age. The Wilford Hall audioogist was the

one who categorized her loss as mild or moderate. The ENT and the

audiologist at Audicles said severe or profound. I have heard good things

about Sunshine Cottage, and have a call into them. (I believe they are on

spring break through next week).

Thanks for all the welcomes and advice -- keep it comin'!

Meredith

Re: new to group - my intro (long....)

> > I'm in San , TX. Anyone know of a good pediatric audiologist

here?

>

> We're in San too! Who did the last tests?

>

> Kay

[Guest guest]

> Tests were done at Wilford Hall Medical Center.

We're from there too! In fact, my hubby works there (not in audiology). I have

some ideas

about that, but I'll save them in case we can get together.

> I believe they are on

> spring break through next week.

Yep. JD is in Sunshine's mainstream program so we're very familiar with them and

their

audiologists. And just because they're on spring break, sometimes the

audiologists will

continue to work. Lets try to get together this weekend.

Give me a call or write to me off-list:

listenup@...

Kay

[Guest guest]

Meredith

Welcome! You are not alone here and what you are feeling is totally normal.

A book that I liked in the beginning was " Choices in Deafness " by Sue

Schwartz. I gives lots of info. Also see if your area has an Infants and

Toddler program (usually for developmentally disabled or sensory impaired

kids) funded by schools, health dept. and social services. They are a great

source of support and info.

My son , now 4, was deafened by bacterial meningitis at 5 mos. He is

profoundly deaf. We have tried hearing aids, we sign and now he is oral. We

chose to have implanted. At the time he was 19 MOS old. They implant

younger kids now. signs a little still but in oral language skills he

is now average as compared to HEARING peers. This is OUR story. There are

many choices in raising a deaf/HOH child and the right one is the one that

works for your family.

Mom to , 4, N24 8/98

[Guest guest]

please delete me from this website

[Guest guest]

Hi, Meredith, and welcome. A book I would definitely recommend is

Choices in Deafness by Sue Schwartz. It tells about the communication

choices in an unbiased, informative way and shares about families using

the different options and how they feel about them and why they chose

them. It's very helpful. You're going to be learning so much, so try

not to get too overwhelmed. If you do, just take a breather and don't

think about everything for a while. This isn't a race or anything, and

you have the best interests of your child in mind, so it will all work

out great. As far as when to look into communication options, I'd start

reading as much as I could about all of them as soon as you feel

ready--now if you want. I was so unsure and uninformed about EVERYTHING

having to do with hearing loss that I read everything I got my hands on,

and it did help out quite a bit. I talked to many other parents in the

same boat, too, so you're on the right track. That was probably the most

helpful thing of all. Again, welcome!

Darla (profoundly deaf son--11 years old TODAY!!!, 1 hearing son--8 years

old)

On Thu, 8 Mar 2001 20:12:56 -0600 " The Family "

writes:

>Are there any books you all

> would

> recommend? Any thoughts on when we'll have a more definite idea

> about the

> extent of her loss? When do we start thinking about communication

> options?

> When would we consider cochlear implants? Any help, suggestions, etc

> would

> be great -- I look forward to learing from you all!

>

> Thanks,

>

> Meredith

>

> ==========================================

> Meredith

> Mommy to (3/31/99, at full-term)

> and Alison (11/20/00, at 32 weeks)

> email: merichard@...

> ==========================================

>

>

> All messages posted to this list are private and confidential. Each

> post is the intellectual property of the author and therefore

> subject to copyright restrictions.

>

>

[Guest guest]

Isn't that lucky!!! I'm sure you're heard by now (I've been out of

town), but Kay, who's in charge of this list, is in San !

Awesome.

On Thu, 8 Mar 2001 21:47:13 -0600 " The Family "

writes:

> Agh! Thank you for letting me know -- now I'm freaking out again.

>

> I'm in San , TX. Anyone know of a good pediatric audiologist

> here?

>

> Thanks --

>

> Meredith

>

>

> Re: new to group - my intro (long....)

>

>

> > At 08:12 PM 3/8/01 -0600, you wrote:

> > >She told me that at such a young age it is not possible to

> determine

> > >the severity of the loss, so they assume a moderate one and then

> watch

> her

> > >to know how to adjust the aids. Does this seem right to those who

> have

> had

> > >infants diagnosed with a loss?

> >

> > Nooooooooooooooooo! Where do you live? You definitely need to find

> an

> > audiologist who is well-versed in newborn/infant ABRs. It can be

> difficult

> > to get a good ABR result, especially if they didn't sedate her,

> but it is

> > do-able. Our first ABR was a disaster...the audiologist let one of

> us hold

> > him during the ABR, and let him suck on a pacifier. I later

> learned that

> > these could easily mess up the results (and they did...our next

> ABR was

> > plain as day

> .......

>

> > Let us know where you live, and someone here is likely to have a

> > recommendation for a pediatric audiologist that might be able to

> give you

> > some extra help. Welcome to the list!

>

>

>

> All messages posted to this list are private and confidential. Each

> post is the intellectual property of the author and therefore

> subject to copyright restrictions.

>

>

[Guest guest]

Hi Meredith,

Welcome. First of all I want to say that I understand how hard it is to

receive the news that your child has a hearing loss. I too was devastated.

I recommend the book, The " Silent Garden " to help you through the grieving

period. Someone else had recommended it to me (I believe from this site).

I am also a new member to Listen-Up. I read your letter and there are some

similarities between our 2 stories. My son, Zane is just now 4 months old

and was born with severe to profound hearing loss due to a chromosomal

abnormality. We heard the same things from our audiologist - that he was

too young to determine the severity of his loss, but they assumed severe to

profound because they got no responses from the ABR testing. Our

audiologist set his hearing aids assuming he had an above 80 db hearing

loss. We haven't noticed any changes in him when the aids are in and

believe they are not helping.

How are your daughter's tympanongram results (the flexibility of the ear

drum)? Zane's are flat, meaning that he probably has fluid in his middle

ear, and we are planning to have tubes put in to drain the fluid in his

middle ear. Is this something your ENT/Audiologist has considered? Then we

will do the ABR testing again with the tubes in to see if we get anything.

They say the fluid can add a 40 db hearing loss. Our son's aids are Digital

Widex C-18s.

Regarding schooling ... Do you have an Early Intervention Program where you

live? Here in SF/CA we have Early Start, which is a program through the

school district to help children with special needs from 0-3 yrs. old., and

our son qualifies by having a hearing loss. Someone comes to our house

once/week to work with Zane. We sign with Zane as much as we know and are

determined to learn more. We figure no matter what type of schooling

program (which we have not decided at this time) we put Zane in later -

knowing how to sign can only help. Also, we're not sure if Zane will ever

be able to hear anything at all. If that turns out to be the case, we

definitely want him to be able to communicate.

I hope you find some of this helpful. If I left out any pertinent

information, please feel free to ask. It's rare to speak with another

parent of an infant that has already been diagnosed with a hearing loss.

I'm sure we have a lot to talk about. Feel free to contact me outside the

list (k).

Kelli

Mommy to Zane - 11/08/00

new to group - my intro (long....)

Hi there,

I am the mommy to a nearly-four-month-old daughter named Alison who has just

been diagnosed with hearing loss. I am full of questions and hope to get

feedback, advice, etc. from this list. Alison was born at 32 weeks after I

developed some still-unidentified infection. She was in the NICU for 4

weeks, and while there developed bacterial meningitis. She was also treated

with gentamicin and vancomycin, so for all these reasons she was at risk for

hearing loss. She was initially given the OAE test, and her left ear passed,

but right ear did not. They repeated the test four more times, and got the

same results twice, then the last two times, both ears failed. So we were

sent for an ABR. I thought that ABRs were fairly conclusive, and was

expecting to find out whether she had a loss and how severe it was. The

audiologist who preformed the ABR initially told me that she had a mild

loss, possibly moderate. But when we were referred to the ENT two weeks

later, he said the loss was more likely severe or profound, and I was

devastated. Today we went to see another audiologist to have hearing aid

molds. She told me that at such a young age it is not possible to determine

the severity of the loss, so they assume a moderate one and then watch her

to know how to adjust the aids. Does this seem right to those who have had

infants diagnosed with a loss? We do think Alison has some hearing -- she

does seem to hear very lound noises, and a few days ago the dog barked

suddenly nearby and she woke up. She doesn't seem to notice when I talk to

her in a conversational tone, and I don't seem to be able to soothe her with

my voice alone as I could my son (he is now nearly 2). But, she is also not

quite 16 weeks old (8 adjusted), so we are unsure what her response should

be. Anyway, I think I am probably still a bit in denial (as today's

audiologist was quick to point out...) but I really want to do the absolute

best for Alison. Everything is so new. Are there any books you all would

recommend? Any thoughts on when we'll have a more definite idea about the

extent of her loss? When do we start thinking about communication options?

When would we consider cochlear implants? Any help, suggestions, etc would

be great -- I look forward to learing from you all!

Thanks,

Meredith

==========================================

Meredith

Mommy to (3/31/99, at full-term)

and Alison (11/20/00, at 32 weeks)

email: merichard@...

==========================================

All messages posted to this list are private and confidential. Each post is

the intellectual property of the author and therefore subject to copyright

restrictions.