Re: New here, intro and lots of questions

June 15, 2006

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Hey there Kriste,

First, welcome to the list. As you've already discovered, it's a great place

with a ton of support! The combined knowledge of this place is amazing. And

the bonus is that people here are more than willing to share their

experiences or try to help each other find answers. It's really great.

I'm Jill, mother of 2 and married to the same furry beast for 24 years. Our

D/HOH son, Ian, is 15 and finishing up his sophomore year in high school. He

has a progressive conductive loss that is now in the lower moderate range,

edging towards severe. Our daughter, , is 12 and has no hearing loss. Our

audiologist checked her hearing around 1st grade and announced that was the

first time he'd officially diagnosed a child with " selective hearing. " So,

she's not HOH, just merely stubborn and likes to ignore us. (grin)

We learned about Ian's hearing loss when he was 7½ and it took another year

to get an accurate diagnosis. Ian lip read his way through his first booth

tests with a really, really bad audiologist.

Talk about feeling like a jerk and the world's worst mother! In hindsight, I

wonder how I could have missed this kid's hearing loss for so long -- long

enough for him to teach himself to be such a good reader! We all missed it for

years! All the clues seem so obvious to me now, but back then I thought they

meant something else -- and so did his doctors.

So don't worry about feeling guilty or depressed or crying until you're

dehydrated. It really is normal and almost everyone goes through some form of

that. And for each of us it passes in its own time and way. For some, counseling

was needed because it just wouldn't go. But whatever your experience, know

that those emotions are valid and you don't need to be embarrassed by them. My

emotional roller coaster had everything from grief to anger to a very weird

period where I wondered if the hearing aids were going to damage what was left

of his hearing. I spent a franticly obsessed week on the internet looking

to see if there was any evidence that the aids I thought were helping him were

actually going to make things worse by blasting sound into an already damaged

ear. (sigh) I was so embarrassed about that particular stage that I didn't

admit to it until rather recently. Of course, there isn't any evidence --

it was merely an insane mother stage that passed quickly, thank goodness.

And try not to obsess over lost time. What's done is done. Now you do the

best with what you know and you move forward. Honestly, you have not lost so

much that it cannot be regained. Our kids are resilient little wonders. You'll

be amazed by you daughter. (I am still amazed by our son.)

You are going to learn so much in the next year that it's going to feel like

you've gotten a medical degree. At first it is overwhelming, and that is why

this group is so great. You come here and ask questions. Everyone here has a

slightly different experience and lots of patience. We can translate

doctor-speak and even help you come up with more things to ask your doctors.

So, don't be shy about asking questions. We really have been there and done

that.

Ian is the only D/HOH (deaf / hard of hearing) person in our extended

family. Unless we count the 94-year-old great-grandfather who started wearing

aids

at 80 -- which we don't. Ian is a one-of-a-kind for our family and a

on-of-a-kind in his school. We learned everything about hearing loss by asking

our

doctors a ton of questions, and from kind and patient people like those on this

list.

As to thinking your daughter was just fine ... the truth is that in so many

ways she is just fine and always has been. Her hearing loss is just a small

piece of her and now that you know about it, you can give it the attention it

needs. Lilly is still Lily and she's probably going to adapt to this new

reality faster than you do. Our Ian just takes things in stride, while I end up

with sudden surges of that old mother-guilt and tears and worry. I now figure

that's all just part of my job. (grin)

Again, welcome to the group,

Jill

PS: Yahoo ... I really hate this new Yahoo layout stuff. It puts the quoted

(cut and paste) text into a block and then wraps my response around it like

it is a picture in Microsoft Word. I have to cut and past the desired text out

of that " box " -- which was the initial cut and paste out of the original

email. What a pain! Or perhaps it is only doing this to me ... and I can

continue with my theory of the maniacal internet daemon gas-lighting me. LOL

June 15, 2006

Hi Kriste,

Our stories are similar. My daughter was diagnosed at 17 mos. with what also

turned out

to be a progressive loss. The first thing I did was grieve - you have suffered a

loss and you

need to do that. Then I read everything I could. There are several disorders

that can cause

this and your daughter needs to be seen by a doctor who specializes in hearing

loss,

preferably an otologist or otolaryngologist (more training than an ENT) and

probably a

geneticist. Yes, the ABR is really necessary. As you can tell from the sound

field test,

there's just too much room for error, and the ABR is pretty accurate. She may

also have to

be sedated for a CT scan (or MRI), I'm just telling you so you'll be prepared.

That's very

important for diagnosing the cause. After you're through with the doctors the

pediatric

audiologist becomes your best friend, so it's really important to have a good

relationship

with someone you trust. When Sofie was diagnosed we got in-home services from

Children's Hospital. We'd get weekly visits from someone who was essentially a

teacher of

the deaf and they taught us some beginning signs. That was life in the

beginning. She has

had a similar loss to your daughter and happened to respond VERY well to hearing

aids.

Because you feel like you've already lost a lot of time, I would get on the

phone and try to

get appointments scheduled as soon as possible. It really is important to try to

get hearing

aids ASAP. If one center tells you they can't schedule an ABR for four weeks,

for example,

call up another center and get in the car. You really need those results.

Things do seem dark at the beginning. But I don't think you should spend any

more time

beating yourself up. You need to devote that energy to communicating with your

daughter

and getting her treated. All of us here have our own great success stories,

yours is just yet

to come.

Janet

June 15, 2006

Hi Kriste,

Our stories are similar. My daughter was diagnosed at 17 mos. with what also

turned out

to be a progressive loss. The first thing I did was grieve - you have suffered a

loss and you

need to do that. Then I read everything I could. There are several disorders

that can cause

this and your daughter needs to be seen by a doctor who specializes in hearing

loss,

preferably an otologist or otolaryngologist (more training than an ENT) and

probably a

geneticist. Yes, the ABR is really necessary. As you can tell from the sound

field test,

there's just too much room for error, and the ABR is pretty accurate. She may

also have to

be sedated for a CT scan (or MRI), I'm just telling you so you'll be prepared.

That's very

important for diagnosing the cause. After you're through with the doctors the

pediatric

audiologist becomes your best friend, so it's really important to have a good

relationship

with someone you trust. When Sofie was diagnosed we got in-home services from

Children's Hospital. We'd get weekly visits from someone who was essentially a

teacher of

the deaf and they taught us some beginning signs. That was life in the

beginning. She has

had a similar loss to your daughter and happened to respond VERY well to hearing

aids.

Because you feel like you've already lost a lot of time, I would get on the

phone and try to

get appointments scheduled as soon as possible. It really is important to try to

get hearing

aids ASAP. If one center tells you they can't schedule an ABR for four weeks,

for example,

call up another center and get in the car. You really need those results.

Things do seem dark at the beginning. But I don't think you should spend any

more time

beating yourself up. You need to devote that energy to communicating with your

daughter

and getting her treated. All of us here have our own great success stories,

yours is just yet

to come.

Janet

June 15, 2006

Kriste:

First of all, stop beating yourself up for something you could not

control. I too had a very similar situation with my daughter

who is now 10. I took her in for a hearing test at the age of 1 1/2

because the " sperm donor " 's mother had hearing loss. I was concerned

but she tested " just fine " . Well, when we hit 2nd grade, she failed

the school hearing test. Took her to a bunch of doctors before we

made it to the audiologist. Come to find out, she has 70% loss in

her left ear and 80% in her right! I was devistated. I cried all

the way home from the appointment. I couldn't believe this was

happening to us - to me! Once I got over the initial shock and

stopped feeling sorry for myself (not that I'm saying that is what

you are doing now, it is what I did), I realized that it could be

worse and did what I needed to do for my daughter. I asked her why

she never told me she had a problem. Her exact words were " I didn't

know that I did mom. " She thought that that was the way she was

supposed to hear the world. I kept asking myself why I didn't notice

something sooner but there are no answers; she adapted to the world

she thought she was hearing.

Once she got her aids (purple aids with ready for this, neon yellow,

pink and green molds!!) it was like Christmas every day for her. She

had many many questions for me such as: what is that noise, did you

hear that mom, etc. She had never heard the furnace kick on before;

didn't know that when you fried an egg, it made a noise! I'll never

forget one night, she yelled for me to come into the bathroom. She

said what is that noise? I didn't hear anything. I told her to

describe it for me. She said tick tick tick - it was her watch! She

had never heard it before!

What I'm trying to tell you is this - even though she has a hearing

loss, she will, and you will be just fine. I know it is an

adjustment but you'll do it! People will stare, kids will ask

questions but YOU WILL GET THROUGH THIS! Lily will become a pro when

she is older of taking her aids in and out! She will amaze you at

how grown up she is about the entire situation and you will be proud

of your little girl because she will have the patience of a saint

when it comes to the normal hearing people's questions!

With the support of your family and a group like this, you'll get

through this just fine.

I don't have the answers to your questions for I have the same for

myself - why! Someday someone will find the answers!

Good luck to you and Lily! You'll do just fine!

Diane

>

> Hi, my name is Kriste and I have 2 daughters, Charlotte (almost 4)

and

> Lily (almost 2). We live in Florida. We are currently in the

process

> of finding out what degree of hearing loss Lily has- Charlotte has

> normal hearing. I have been reading here for a couple of weeks,

> hoping against hope that I didn't really need to be here, that there

> was some mistake. You all seem to be a very kind and knowledgable

> group and I am glad I found you.

>

> Honestly, it has just hit me like a Mack truck today that Lily has

> hearing loss. I am bleary eyed from tears. I know Lily will be OK-

> it is just overwhelming right now. She had the sound field???

hearing

> test today. The audiologist says her right ear shows a

> severe/profound loss and her left ear shows a moderate/severe loss.

> Two weeks ago, she had an OAE with abnormal results, although I did

> not know the right questions to ask at that time so I do not know

what

> her results were exactly. She has never had an ear infection. We

> have no family history of childhood hearing loss.

>

> What I am beating myself up about is how did I not notice that my

baby

> could not hear me? She missed crucial time to hear sounds and learn

> and grow and I missed it. She passed the newborn hearing test in

her

> left ear with flying colors when she was first born. Her right ear

> was questionable so I took her to an audiologist. She told me the

> results were " inconclusive " for her right ear and I think this just

> did not make an impression on me. I did not hear that this could be

> serious and that it was imperative for me to bring her back in. She

> had mentioned having to sedate Lily for another type of hearing test

> and I didn't like the sound of that. Lily's primary care doctor

> agreed with me and we both decided that her left ear, the good ear

> would be enough for her until she was old enough to take a hearing

> test without sedation. Turns out we were both very wrong. I should

> have taken care of it when she was tiny but I really and truly

thought

> she was fine. It appears that she may have some type of

progressive loss.

>

> Does anyone have any info on progressive hearing loss and what can

> cause it? Are the sound field tests on an almost 2 year old an

> accurate enough way of finding out how much hearing loss there is

on a

> child? Should the ABR absolutely be given to her in order to

diagnose

> her hearing loss?

>

> Thanks to anyone who has any ideas for me. I appreciate you

listening.

>

> -Kriste

> Charlotte (almost 4) and Lily (almost 2 with hearing loss)

>

June 15, 2006

Hi Kriste - welcome. I'm so glad you found us! I'm Barbara, mom to Tom

(13) and Sam (11). Both my boys are deaf and have cochlear implants,

although implants are relatively new to our family. Tom received his

last Nov., Sam's is just 3 weeks old! Both boys wore hearing aids well

prior to their implants; Tom in particular had a pretty significant drop

in hearing which is why we moved in the direction we did.

Your story sounds so familiar! Neither of my boys were screened at

birth. Tom was born in Louisiana before they started screening; Sam was

born here in New Hampshire, before they started screening all newborns

(our hospital screened high risk babies but not well babies). So Tom

was diagnosed with his moderate/severe hearing loss when he was over 3.

They tested Sam then ( " because we test siblings " - thank goodness!) and

Sam turned up with a profound loss. And sure, I really beat myself up

because I felt I should have known. In addition, boys in my family seem

to have hearing problems - shouldn't I have realized that? It turns out

I'm the carrier and that at first was very hard for me.

I believe - at least in my situation - that I had to grieve before I

could move forward. I had a lot of well meaning people tell me " Oh you

can't feel that way " - well guess what, I did! Then I felt guilty

because I felt guilty... I think I finally have moved past that but it

was hard, especially at first.

I remember 10-1/2 years ago looking at my beautiful boys and wondering

if they'd be able to communicate with me. Tom recently earned his black

belt in taekwondo - he's the youngest black belt in our school. I

literally stood there when he was awarded his belt and cried my eyes

out! All I could think about was 10 years ago and wondering how he'd

do. As someone said, if I'd know what I know now, I wouldn't have

worried! Both my boys are mainstreamed, have nice friends and are very

active with their interests. Sam is my baseball star (we call him

Little Papi ). I think both of them feel that they can do

anything they set their mind to doing...

Luterman writes excellent books about families who have kids with

hearing loss - he really gets it! I've had the privilege of hearing him

speak twice now - I left both sessions with make-up completely ruined

because he *always* makes me cry (yes, I admit to crying easily). The

two books I can think of are " When your child is deaf " and " The young

deaf child " . He really gears his writings towards families. Another

book that helped me early on is called " Choices in Deafness " by Sue

Schwarz (I may have spelled her last name incorrectly).

If you need to vent - here's the place for you! And ask all the

questions you need to ask - we all have " been there, done that " . I'm so

glad you're here...

Hugs,

Barbara

ckobrien97 wrote:

> Hi, my name is Kriste and I have 2 daughters, Charlotte (almost 4) and

> Lily (almost 2). We live in Florida. We are currently in the process