Thank you!

[Guest guest]

Hi everyone,

I just want to thank you for your responses and helpful info. I have

already in fact read the book " Choices in Deafness. " We were given that to

read last monday when she had her evaluation through the county. Many of

you mentioned that. It is definitely the book that has been very good to

make me realize that there are so many options available for Tessa. Couple

of questions again for everyone, though. We took Tessa for her appointment

with the ENT & Audi yesterday. They told us that due to her profound loss

(they found no hearing up to 95 dB, where they stopped), her right ear would

do no good with a hearing aid. However, her left ear is moderate to severe

(at some frequencies it is only 55dB loss, and others up to 75 dB). One of

the weird things to me is that her loss seems to be more in the lower

frequencies (unlike many of the things I've read that say typical loss

begins in the higher frequencies). This leads me to believe that maybe her

cochlea is malformed. Anyhow, I'm anxious to see if she may be able to get

an implant, however, I'm afraid that she won't be able to if her cochlea is

malformed or if she has no cochlea on the right side.

So, back on track again, sorry. We went ahead and ordered her a hearing aid

and an FM system, which the audiologist recommended to get her back on track

as soon as possible. She said that with the FM system, we can concentrate

much more on speech. The hearing aid we ended up ordering was a Gaia

hearing aid, by Oticon. Wonder if anyone has any experience or anything

with the Gaia, or with Oticon. Unfortunately, I haven't done much research

on hearing aids, so I basically had to trust that the audiologist was doing

what was best for Tessa. I'm afraid we got ripped off, but there's nothing

I can really do about it because I don't know enough and all I really want

is truly what is best for Tessa. Secondly, we ordered the Lexis FM system,

which she said is the best system around. It's probably the most expensive,

but...again, I don't know enough. She quoted us a lower price that what it

normally is on accident, so she said they would give that to us at cost.

So, we've got all this money we've got to pull out of the air....from where,

I have no idea, but we've got to get it by next Thursday when she gets

fitted. Boy, this situation really puts people in a bind. How did you all

deal with this? I mean....I know there are programs to help financially,

but that has come on so quickly and with her age (18 months) it seeems as

though we don't have time to ask for money. We can't lose anymore time.

It's too important for her right now.

I know my daughter is incredibly smart. I don't want to have unrealistic

expectations that she will just catch on, but I hope she does. Guess

there's a difference between hope and expectations, right? Anyhow, I

guess mostly I wanted to see if anyone has any experience with any of these

pieces of equipment.

Once again, I want to thank you all for all of your help. I really

appreciate it.

Sara

Tessa 18 mo

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[Guest guest]

Sara,

I know it is difficult when you don't know anything about the equipment and you

have to rely on what your audi tells you. I was so lost when I found out about

my daughter's loss. The audi could have sold me anything, and I wouldn't have

known better.

I don't know anything about the Oticon hearing aids, as my daughter wears Widex

Sensos. But I did just get the Lexis FM system in January and it is awesome!

It has helped her tremendously. She began to lose more hearing about a year

ago, so her attention span in school was awful because she was having to work so

hard to hear. Now the Lexis has helped her get back on track.

The financial aspect is terrible, and makes me so mad that the insurance

companies keep getting away with not having to pay for these necessary devices.

In our case we had just filed for a second mortgage because we were going to add

onto our house. But instead we used the money to pay for our daughter's first

year at e and everything else. (and are still paying for it 3 years

later...but it was necessary)

Best of luck to you.

Robin

Brittney (just turned 6, severe SNL)

(3, hearing)

[Guest guest]

<< Anyhow, I guess mostly I wanted to see if anyone has any experience with any

of these

pieces of equipment.>>

Hi Sara,

My son wears Oticon Digifocus II hearing aids and we have the Lexis FM system.

I know that Gaia is the newest of the Oticon line but don't know much about

them. However, we have had ' Digifocus aids for almost 4 years and they

have never once needed a repair...not even when he fell a couple of times and

actually hit them against the wall. They've also been dropped countless times

and one was carried off by the dog and lost for a week. Still, they work

beautifully. So, durability-wise, I have to say we're well-pleased. '

loss was mild to severe when we began but he is now mod to profound on both

sides and the aids have been able to keep up with a few simple programming

changes by the audi.

We had the Microlink FM for almost three years because it was really the only

wireless FM choice out there. We got the Lexis about 6 months ago and we really

love it. It did have one problem where the programming went goofy (which the

unit told us by showing a message in the window so we caught it right away) and

the company sent a replacement unit in 2 days. Yes, it's under warranty but

that's still nice service. prefers the Lexis to the Microlink that he

had--he says it's " louder " . Our audi and I think that means the sound is

clearer for him. We didn't have any problems with the Microlink when we had it

so it's a good unit, also.

I don't know if your audi made this clear to you but you have 30 days to try

this equipment and see if it's right for Tessa. (Lexis gave us three months!)

It's required by law. I know it's a huge outlay of money but I thought it might

help you to know that your decision is not etched in stone. Also, Oticon has an

very, very good website were they discuss hearing loss, aids (not just their

own), the Lexis, and even have a kids' section.

Carol - mom to , 7.11, mod to profound, LVAS

[Guest guest]

<< Anyhow, I guess mostly I wanted to see if anyone has any experience with any

of these

pieces of equipment.>>

Hi Sara,

My son wears Oticon Digifocus II hearing aids and we have the Lexis FM system.

I know that Gaia is the newest of the Oticon line but don't know much about

them. However, we have had ' Digifocus aids for almost 4 years and they

have never once needed a repair...not even when he fell a couple of times and

actually hit them against the wall. They've also been dropped countless times

and one was carried off by the dog and lost for a week. Still, they work

beautifully. So, durability-wise, I have to say we're well-pleased. '

loss was mild to severe when we began but he is now mod to profound on both

sides and the aids have been able to keep up with a few simple programming

changes by the audi.

We had the Microlink FM for almost three years because it was really the only

wireless FM choice out there. We got the Lexis about 6 months ago and we really

love it. It did have one problem where the programming went goofy (which the

unit told us by showing a message in the window so we caught it right away) and

the company sent a replacement unit in 2 days. Yes, it's under warranty but

that's still nice service. prefers the Lexis to the Microlink that he

had--he says it's " louder " . Our audi and I think that means the sound is

clearer for him. We didn't have any problems with the Microlink when we had it

so it's a good unit, also.

I don't know if your audi made this clear to you but you have 30 days to try

this equipment and see if it's right for Tessa. (Lexis gave us three months!)

It's required by law. I know it's a huge outlay of money but I thought it might

help you to know that your decision is not etched in stone. Also, Oticon has an

very, very good website were they discuss hearing loss, aids (not just their

own), the Lexis, and even have a kids' section.

Carol - mom to , 7.11, mod to profound, LVAS

[Guest guest]

Sandy -

Good for you for accepting what you can do (particularly with the exercise). I

can very much relate - I had total hip replacement surgery a little over a year

ago and it made a huge difference in my life.

And also, huge congratulations for realizing when you were no longer getting

satisfaction from the ice cream you bought.

I love Bacon's book - it focuses on health, not size. It is a wonderful

compliment to IE.

>

> >

> >

> > I've been reading the many topics and responses these past few days and

> > wanted to thank you all for the authentic exchange. I don't often post here,

> > but I gain so much benefit from all the sharing that does occur. I

> > appreciate it greatly and my opportunity to gain this support. I value that

> > it is an " authentic " exchange, we all may not agree and some statements may

> > be difficult to take in, but the exchange occurs and I think hearing the

> > range of responses helps us all in our critical thinking about these issues

> > and our life/IE process.

> >

> > I can relate to every single posting, and it always helps me immensely in

> > my own slow (1 step forward, 8 steps back....I am depressed about it today)

> > process of IE. I feel I am an amalgamation of resistance to it, thankful for

> > it, find it brings peace, yet still attached to diet mentality and fighting

> > weight and health issues, etc. It's really hard. And I know you all know how

> > hard it is. So thank you again.

> >

> >

> >

> >

> >

>