Aubrie hearing check up

November 21, 2006

We saw the doctor 4 weeks after the ossicle bone reconstruction. Hearing is

so improved! He didn't do another hearing test since I brought a copy of

the one from school last week. But he's delighted with the improvement so

far. It indicates that we did the right thing. So we wait 3 more months

for the healing to complete. Then we decide what, if anything, needs to be

done next. He said, " Now is when we get greedy. " Meaning " It's great that

she's hearing this good now - but we want perfect. " His goal is no hearing

aids at all - but we'll do whatever we need to if there is no achieving

perfection.

You guys, this is such a miracle! And so frustrating that we didn't find

this and take care of it sooner. I sort of think that doctors and

audiologists were too quick to decide CHARGE means hearing can't be fixed.

I think they assumed that whatever was wrong had to be huge and irreparable.

I wish we'd have found this sooner. We wouldn't have found it at all if not

for this list. All of the possibilities that are shared here are

invaluable. Think of how it would be to be raising our kids in the vacuum

of our own little worlds! I know Aubrie's life would be drastically

different if I didn't have this CHARGE family. They say it takes a village

- I say it takes a world!

Michele W

Aubrie's happy mom

November 21, 2006

michelle i say it takes a list sderve like orus!!!!!!!!!!111 and as for

aubrie thats great news i really think that soemtimes we need to take care

of our stuff than the drs LOL

>

> We saw the doctor 4 weeks after the ossicle bone reconstruction. Hearing

> is

> so improved! He didn't do another hearing test since I brought a copy of

> the one from school last week. But he's delighted with the improvement so

> far. It indicates that we did the right thing. So we wait 3 more months

> for the healing to complete. Then we decide what, if anything, needs to be

> done next. He said, " Now is when we get greedy. " Meaning " It's great that

> she's hearing this good now - but we want perfect. " His goal is no hearing

> aids at all - but we'll do whatever we need to if there is no achieving

> perfection.

>

> You guys, this is such a miracle! And so frustrating that we didn't find

> this and take care of it sooner. I sort of think that doctors and

> audiologists were too quick to decide CHARGE means hearing can't be fixed.

> I think they assumed that whatever was wrong had to be huge and

> irreparable.

> I wish we'd have found this sooner. We wouldn't have found it at all if

> not

> for this list. All of the possibilities that are shared here are

> invaluable. Think of how it would be to be raising our kids in the vacuum

> of our own little worlds! I know Aubrie's life would be drastically

> different if I didn't have this CHARGE family. They say it takes a village

> - I say it takes a world!

>

> Michele W

> Aubrie's happy mom

>

November 21, 2006

Ellen-

Exactly right!

Michele

_____

From: CHARGE [mailto:CHARGE ] On Behalf Of

ellen howe

Sent: Monday, November 20, 2006 11:43 PM

To: CHARGE

Subject: Re: Aubrie hearing check up

michelle i say it takes a list sderve like orus!!!!!!!!!!111 and as for

aubrie thats great news i really think that soemtimes we need to take care

of our stuff than the drs LOL

November 21, 2006

Michele,

I am so happy for Aubrie and you I hope everything keeps going

smooth!!!

Hugs,

Crystal mom to (10), (3), and Eva (19 month old CHARGEr)

wife to Dan in Illinois

>

> We saw the doctor 4 weeks after the ossicle bone reconstruction.

Hearing is

> so improved! He didn't do another hearing test since I brought a

copy of

> the one from school last week. But he's delighted with the

improvement so

> far. It indicates that we did the right thing. So we wait 3 more

months

> for the healing to complete. Then we decide what, if anything,

needs to be

> done next. He said, " Now is when we get greedy. " Meaning " It's

great that

> she's hearing this good now - but we want perfect. " His goal is

no hearing

> aids at all - but we'll do whatever we need to if there is no

achieving

> perfection.

>

> You guys, this is such a miracle! And so frustrating that we

didn't find

> this and take care of it sooner. I sort of think that doctors and

> audiologists were too quick to decide CHARGE means hearing can't

be fixed.

> I think they assumed that whatever was wrong had to be huge and

irreparable.

> I wish we'd have found this sooner. We wouldn't have found it at

all if not

> for this list. All of the possibilities that are shared here are

> invaluable. Think of how it would be to be raising our kids in

the vacuum

> of our own little worlds! I know Aubrie's life would be

drastically

> different if I didn't have this CHARGE family. They say it takes

a village

> - I say it takes a world!

>

> Michele W

> Aubrie's happy mom

>

November 21, 2006

Hi Michele. It's so nice to learn such good news about Aubrie!

na is going to try a MF hearing device (a sort of radio; we will use a

microphone). When she's not with a cold/otitis, she can hear quite well.

Tomorrow she'll be done a CT scan to see if the bones are ok, etc. And that

study is going to be done due to you!!

Then I'll let you know what's going on inside her ear, and if the hearing

aid is useful.

Kind regards,

Vanesa (mom to na, 7 m.o. charger, and to Guille, 4 y.o. great kid with

low insuline

>

> We saw the doctor 4 weeks after the ossicle bone reconstruction. Hearing

> is

> so improved! He didn't do another hearing test since I brought a copy of

> the one from school last week. But he's delighted with the improvement so

> far. It indicates that we did the right thing. So we wait 3 more months

> for the healing to complete. Then we decide what, if anything, needs to be

> done next. He said, " Now is when we get greedy. " Meaning " It's great that

> she's hearing this good now - but we want perfect. " His goal is no hearing

> aids at all - but we'll do whatever we need to if there is no achieving

> perfection.

>

> You guys, this is such a miracle! And so frustrating that we didn't find

> this and take care of it sooner. I sort of think that doctors and

> audiologists were too quick to decide CHARGE means hearing can't be fixed.

> I think they assumed that whatever was wrong had to be huge and

> irreparable.

> I wish we'd have found this sooner. We wouldn't have found it at all if

> not

> for this list. All of the possibilities that are shared here are

> invaluable. Think of how it would be to be raising our kids in the vacuum

> of our own little worlds! I know Aubrie's life would be drastically

> different if I didn't have this CHARGE family. They say it takes a village

> - I say it takes a world!

>

> Michele W

> Aubrie's happy mom

>

November 22, 2006

ooh im so happy for aubrie

>

> Hi Michele. It's so nice to learn such good news about Aubrie!

>

> na is going to try a MF hearing device (a sort of radio; we will use

> a

> microphone). When she's not with a cold/otitis, she can hear quite well.

> Tomorrow she'll be done a CT scan to see if the bones are ok, etc. And

> that

> study is going to be done due to you!!

>

> Then I'll let you know what's going on inside her ear, and if the hearing

> aid is useful.

> Kind regards,

>

> Vanesa (mom to na, 7 m.o. charger, and to Guille, 4 y.o. great kid

> with

> low insuline

>

> On 11/21/06, Michele Westmaas

<momonamission@...<momonamission%40verizon.net>>

> wrote:

> >

> > We saw the doctor 4 weeks after the ossicle bone reconstruction. Hearing

> > is

> > so improved! He didn't do another hearing test since I brought a copy of

> > the one from school last week. But he's delighted with the improvement

> so

> > far. It indicates that we did the right thing. So we wait 3 more months

> > for the healing to complete. Then we decide what, if anything, needs to

> be

> > done next. He said, " Now is when we get greedy. " Meaning " It's great

> that

> > she's hearing this good now - but we want perfect. " His goal is no

> hearing

> > aids at all - but we'll do whatever we need to if there is no achieving

> > perfection.

> >

> > You guys, this is such a miracle! And so frustrating that we didn't find

> > this and take care of it sooner. I sort of think that doctors and

> > audiologists were too quick to decide CHARGE means hearing can't be

> fixed.

> > I think they assumed that whatever was wrong had to be huge and

> > irreparable.

> > I wish we'd have found this sooner. We wouldn't have found it at all if

> > not

> > for this list. All of the possibilities that are shared here are

> > invaluable. Think of how it would be to be raising our kids in the

> vacuum

> > of our own little worlds! I know Aubrie's life would be drastically

> > different if I didn't have this CHARGE family. They say it takes a

> village

> > - I say it takes a world!

> >

> > Michele W

> > Aubrie's happy mom

> >

November 22, 2006

Vanesa-

I'm glad that our experience is helping someone else. I thanked the dr so

much yesterday. And we had a bit of a discussion about how come we didn't

get to this spot sooner for Aubrie. You just can't look back. Every year,

the testing and the aid technology improves - and so does our kids' ability

to respond to testing and communicate their experiences. So it call comes

together in it's own time. But that's frustrating for us as moms. Anyway,

we both thought the best that can come of it is to share with others so that

this will happen sooner for all whom it's appropriate.

Can't wait to hear more about it. Oh - I just figured out that you meant FM

- don't know what it stands for. Aubrie's used on in school for ages, but

we never used one when she was so young and only had one outside of the

classroom for a short period.

Enjoy the holiday. I hope we all have lots to be thankful for!

Michele W

_____

From: CHARGE [mailto:CHARGE ] On Behalf Of

Vanesa Devetach

Sent: Tuesday, November 21, 2006 3:04 PM

To: CHARGE

Subject: Re: Aubrie hearing check up

Hi Michele. It's so nice to learn such good news about Aubrie!

na is going to try a MF hearing device (a sort of radio; we will use a

microphone). When she's not with a cold/otitis, she can hear quite well.

Tomorrow she'll be done a CT scan to see if the bones are ok, etc. And that

study is going to be done due to you!!

Then I'll let you know what's going on inside her ear, and if the hearing

aid is useful.

Kind regards,

Vanesa (mom to na, 7 m.o. charger, and to Guille, 4 y.o. great kid with

low insuline

On 11/21/06, Michele Westmaas <momonamission@

<mailto:momonamission%40verizon.net> verizon.net> wrote:

>

> We saw the doctor 4 weeks after the ossicle bone reconstruction. Hearing

> is

> so improved! He didn't do another hearing test since I brought a copy of

> the one from school last week. But he's delighted with the improvement so

> far. It indicates that we did the right thing. So we wait 3 more months

> for the healing to complete. Then we decide what, if anything, needs to be

> done next. He said, " Now is when we get greedy. " Meaning " It's great that

> she's hearing this good now - but we want perfect. " His goal is no hearing

> aids at all - but we'll do whatever we need to if there is no achieving

> perfection.

>

> You guys, this is such a miracle! And so frustrating that we didn't find

> this and take care of it sooner. I sort of think that doctors and

> audiologists were too quick to decide CHARGE means hearing can't be fixed.

> I think they assumed that whatever was wrong had to be huge and

> irreparable.

> I wish we'd have found this sooner. We wouldn't have found it at all if

> not

> for this list. All of the possibilities that are shared here are

> invaluable. Think of how it would be to be raising our kids in the vacuum

> of our own little worlds! I know Aubrie's life would be drastically

> different if I didn't have this CHARGE family. They say it takes a village

> - I say it takes a world!

>

> Michele W

> Aubrie's happy mom

>

November 22, 2006

michelle i think it cold b frenquency modualtor kind aluike the fm on radio

i could b wrong though

>

> Vanesa-

>

> I'm glad that our experience is helping someone else. I thanked the dr so

> much yesterday. And we had a bit of a discussion about how come we didn't

> get to this spot sooner for Aubrie. You just can't look back. Every year,

> the testing and the aid technology improves - and so does our kids'

> ability

> to respond to testing and communicate their experiences. So it call comes

> together in it's own time. But that's frustrating for us as moms. Anyway,

> we both thought the best that can come of it is to share with others so

> that

> this will happen sooner for all whom it's appropriate.

>

> Can't wait to hear more about it. Oh - I just figured out that you meant

> FM

> - don't know what it stands for. Aubrie's used on in school for ages, but

> we never used one when she was so young and only had one outside of the

> classroom for a short period.

>

> Enjoy the holiday. I hope we all have lots to be thankful for!

>

> Michele W

>

> _____

>

> From: CHARGE <CHARGE%40yahoogroups.com> [mailto:

> CHARGE <CHARGE%40yahoogroups.com>] On Behalf Of

> Vanesa Devetach

> Sent: Tuesday, November 21, 2006 3:04 PM

> To: CHARGE <CHARGE%40yahoogroups.com>

> Subject: Re: Aubrie hearing check up

>

> Hi Michele. It's so nice to learn such good news about Aubrie!

>

> na is going to try a MF hearing device (a sort of radio; we will use

> a

> microphone). When she's not with a cold/otitis, she can hear quite well.

> Tomorrow she'll be done a CT scan to see if the bones are ok, etc. And

> that

> study is going to be done due to you!!

>

> Then I'll let you know what's going on inside her ear, and if the hearing

> aid is useful.

> Kind regards,

>

> Vanesa (mom to na, 7 m.o. charger, and to Guille, 4 y.o. great kid

> with

> low insuline

>

> On 11/21/06, Michele Westmaas <momonamission@

> <mailto:momonamission%40verizon.net> verizon.net> wrote:

> >

> > We saw the doctor 4 weeks after the ossicle bone reconstruction. Hearing

> > is

> > so improved! He didn't do another hearing test since I brought a copy of

> > the one from school last week. But he's delighted with the improvement

> so

> > far. It indicates that we did the right thing. So we wait 3 more months

> > for the healing to complete. Then we decide what, if anything, needs to

> be

> > done next. He said, " Now is when we get greedy. " Meaning " It's great

> that

> > she's hearing this good now - but we want perfect. " His goal is no

> hearing

> > aids at all - but we'll do whatever we need to if there is no achieving

> > perfection.

> >

> > You guys, this is such a miracle! And so frustrating that we didn't find

> > this and take care of it sooner. I sort of think that doctors and

> > audiologists were too quick to decide CHARGE means hearing can't be

> fixed.

> > I think they assumed that whatever was wrong had to be huge and

> > irreparable.

> > I wish we'd have found this sooner. We wouldn't have found it at all if

> > not

> > for this list. All of the possibilities that are shared here are

> > invaluable. Think of how it would be to be raising our kids in the

> vacuum

> > of our own little worlds! I know Aubrie's life would be drastically

> > different if I didn't have this CHARGE family. They say it takes a

> village

> > - I say it takes a world!

> >

> > Michele W

> > Aubrie's happy mom

> >

November 22, 2006

Ellen-

I think you're right!

Michele W

_____

From: CHARGE [mailto:CHARGE ] On Behalf Of

ellen howe

Sent: Tuesday, November 21, 2006 10:46 PM

To: CHARGE

Subject: Re: Aubrie hearing check up

michelle i think it cold b frenquency modualtor kind aluike the fm on radio

i could b wrong though

November 24, 2006

Ellen and : You both are right! That's the device I was talking

about.

, do you think that na can take any advantage of it while being

just a baby? Can you share with me the disadvantages that you found in it?

(Next week they are going to try one. Yesterday na tried a hearing aid

from another child, and her eyes glittered!!)

Have a nice weekend both of you. I'm so happy with these steps forwards...

(though two nurses resigned (

Vanesa

>

> Ellen-

>

> I think you're right!

>

> Michele W

>

> _____

>

> From: CHARGE <CHARGE%40yahoogroups.com> [mailto:

> CHARGE <CHARGE%40yahoogroups.com>] On Behalf Of

> ellen howe

> Sent: Tuesday, November 21, 2006 10:46 PM

> To: CHARGE <CHARGE%40yahoogroups.com>

> Subject: Re: Aubrie hearing check up

>

> michelle i think it cold b frenquency modualtor kind aluike the fm on

> radio

> i could b wrong though

>

November 29, 2006

ina-

The dr went in thru her ear drum to look at the middle ear structures before

he placed the BAHA screw. That was how he saw that he could fix things. He

looked because he knew her loss was conductive and wanted to see if there

was anything fixable.

Before surgery, she had a mod-severe loss. Now it's reaching up into the

mild range a bit. I don't know the exact numbers without pulling out an

audiogram.

I think he will be watching to see how much her hearing improves by our next

check up in Feb. If she's not perfect, I think he'll want to go in again to

see if there is scar tissue or something that can be adjusted again.

It is amazing. She went without her hearing aid at our family Thanksgiving

dinner and did great!

Michele W

November 29, 2006

Michele,

this is amazing!!! IT is one of those things that seemed so simple to do

FIRST--look all the way in and see if there is another problem.

I love the she went through Thanksgiving without the aid--did she comment about

that at all?

pam

RE: Aubrie hearing check up

ina-

The dr went in thru her ear drum to look at the middle ear structures before

he placed the BAHA screw. That was how he saw that he could fix things. He

looked because he knew her loss was conductive and wanted to see if there

was anything fixable.

Before surgery, she had a mod-severe loss. Now it's reaching up into the

mild range a bit. I don't know the exact numbers without pulling out an

audiogram.

I think he will be watching to see how much her hearing improves by our next

check up in Feb. If she's not perfect, I think he'll want to go in again to

see if there is scar tissue or something that can be adjusted again.

It is amazing. She went without her hearing aid at our family Thanksgiving

dinner and did great!

Michele W

November 29, 2006

Michele,

Did any of this how up on CT scans or MRIs? I am just

wondering if it is possible to become familiar with

the middle ear through other means as opposed to

actually looking into it through the ear drum.

Regardless, this is simply amazing.

ina, mom to Luca (3) & Vinny (17 months w/ cHARgE)

--- Michele Westmaas

wrote:

> ina-

>

> The dr went in thru her ear drum to look at the

> middle ear structures before

> he placed the BAHA screw. That was how he saw that

> he could fix things. He

> looked because he knew her loss was conductive and

> wanted to see if there

> was anything fixable.

>

> Before surgery, she had a mod-severe loss. Now it's

> reaching up into the

> mild range a bit. I don't know the exact numbers

> without pulling out an

> audiogram.

>

> I think he will be watching to see how much her

> hearing improves by our next

> check up in Feb. If she's not perfect, I think

> he'll want to go in again to

> see if there is scar tissue or something that can be

> adjusted again.

>

> It is amazing. She went without her hearing aid at

> our family Thanksgiving

> dinner and did great!

>

> Michele W

>

> [Non-text portions of this message have been

> removed]

>

________________________________________________________________________________\

____

Cheap talk?

Check out Yahoo! Messenger's low PC-to-Phone call rates.

http://voice.yahoo.com

November 30, 2006

They can examine the middle ear by CT scan of the temporal bone. That's how we

found out that Evan has abnormal semi-circular canals (one set of the three), a

" flattened " cochlea (no one seems to know what exactly that means), and abnormal

ossicles (the little bones). And that's why I'm so interested in Aubrie's

procedure--maybe Evan can have it done too.

(mom to Evan, 16 months)

ina Multhaupt wrote:

Michele,

Did any of this how up on CT scans or MRIs? I am just

wondering if it is possible to become familiar with

the middle ear through other means as opposed to

actually looking into it through the ear drum.

Regardless, this is simply amazing.

ina, mom to Luca (3) & Vinny (17 months w/ cHARgE)

--- Michele Westmaas

wrote:

> ina-

>

> The dr went in thru her ear drum to look at the

> middle ear structures before

> he placed the BAHA screw. That was how he saw that

> he could fix things. He

> looked because he knew her loss was conductive and

> wanted to see if there

> was anything fixable.

>

> Before surgery, she had a mod-severe loss. Now it's

> reaching up into the

> mild range a bit. I don't know the exact numbers

> without pulling out an

> audiogram.

>

> I think he will be watching to see how much her

> hearing improves by our next

> check up in Feb. If she's not perfect, I think

> he'll want to go in again to

> see if there is scar tissue or something that can be

> adjusted again.

>

> It is amazing. She went without her hearing aid at

> our family Thanksgiving

> dinner and did great!

>

> Michele W

>

> [Non-text portions of this message have been

> removed]

>

__________________________________________________________

Cheap talk?

Check out Yahoo! Messenger's low PC-to-Phone call rates.

http://voice.yahoo.com

---------------------------------

Everyone is raving about the all-new Yahoo! Mail beta.

November 30, 2006

Pam-

She's not making lots of remarks about the change. I wonder if it's

happened gradually enough that she's not noticed a lot. Or maybe she's not

noticing the difference in her functioning with or without the aid - just

that she's doing what she's always done. She used to not notice when the

battery died. It'd drive us all crazy cuz she'd act like she couldn't hear

til we checked her battery to find out why. Sometimes she is incredibly

self-aware - but other times she's sort of oblivious.

Michele W

_____

From: CHARGE [mailto:CHARGE ] On Behalf Of

pamela.ryan@...

Sent: Wednesday, November 29, 2006 7:49 AM

To: CHARGE

Subject: RE: Aubrie hearing check up

Michele,

this is amazing!!! IT is one of those things that seemed so simple to do

FIRST--look all the way in and see if there is another problem.

I love the she went through Thanksgiving without the aid--did she comment

about that at all?

pam

November 30, 2006

ina-

I have been asking for good images of her middle and inner ear since she was

tiny. No one wanted to put her out with anesthesia for something that they

said wouldn't change what we knew or what we were doing. I even just asked

the ENT again recently (at a different hospital) about an MRI of the ear and

sinuses. Again - not necessary in his opinion. The dr who did the surgery

knew he was going in and said doing the scan in advance wouldn't have made a

difference because he would have still had to go in to see for sure. I can

tell you that I am very frustrated if I let myself do the " what if " thing

and wonder what could have happened if I'd forced the issue when she was

younger. Seems to me that any child with a hearing loss that appears to

have any conductive component at all should have a thorough image of the

middle ear to see if the cause can be seen. Perhaps someone out there will

know if there is a reason not to - like maybe it's nearly impossible to see

those tiny little bones well on any kind of image.

Michele W

_____

From: CHARGE [mailto:CHARGE ] On Behalf Of

ina Multhaupt

Sent: Wednesday, November 29, 2006 1:04 PM

To: CHARGE

Subject: RE: Aubrie hearing check up

Michele,

Did any of this how up on CT scans or MRIs? I am just

wondering if it is possible to become familiar with

the middle ear through other means as opposed to

actually looking into it through the ear drum.

Regardless, this is simply amazing.

ina, mom to Luca (3) & Vinny (17 months w/ cHARgE)

_,_._,___

November 30, 2006

-

That's what I was afraid of - because it means my " what if " is valid! Makes

me incredibly frustrated! But - it's very exciting to know that other kids

can get that image done early and have repairs done sooner if they are

possible. I wonder if Evan's ossicles can be repaired or replaced. Our

surgeon was ready for anything with a full arsenal of prosthetic bones of

all shapes and sizes ready to go. And if Evan's bones are usable at all,

they can be sculpted to the right shape. So sounds like there are

possibilities for him if everything else is in good enough order.

Michele W

_____

From: CHARGE [mailto:CHARGE ] On Behalf Of

Key Storrs

Sent: Wednesday, November 29, 2006 7:01 PM

To: CHARGE

Subject: RE: Aubrie hearing check up

They can examine the middle ear by CT scan of the temporal bone. That's how

we found out that Evan has abnormal semi-circular canals (one set of the

three), a " flattened " cochlea (no one seems to know what exactly that

means), and abnormal ossicles (the little bones). And that's why I'm so

interested in Aubrie's procedure--maybe Evan can have it done too.

(mom to Evan, 16 months)

November 30, 2006

Michele,

the oblivious part sounds like part of her job at her age. My neice is the same

age as Aubrie and there are times that I am totally astounded by her

obliviousness when she is so thoughtful and aware of most things around her. I

think it is who they are!! Anyway, I am just glad that she (Aubrie) is ok and I

guess no remarks are not a bad thing!!

pam

RE: Aubrie hearing check up

Michele,

this is amazing!!! IT is one of those things that seemed so simple to do

FIRST--look all the way in and see if there is another problem.

I love the she went through Thanksgiving without the aid--did she comment

about that at all?

pam

November 30, 2006

,

If it makes you feel any better, I had to fight tooth-and-nail to get that CT

scan done--it was combined with a BAER done under anesthesia this past summer

(and what was supposed to be the cleft palate repair, the first time it was

scheduled). The only reason the ENT relented was because I had a copy of an

email I printed off from Meg with a recommendation all kids with CHARGE should

have a CT scan of the temporal bone done because of the high incidence of ear

and vestibular malformations. We have a post-op this next Monday with his ENT,

and you can bet I'm going to ask about this procedure. Who is Aubrie's surgeon?

I just pulled Evan's CT report. This is what it says: " The right incus and

malleus are deformed, and the stapedius and oval window were not well-defined.

On the left side, the ossicles were deformed, and the malleus was fused to the

scutum. The stapedius and oval window are not well defined. " That doesn't

sound good. There are more findings that also don't sound good--a lot of

" hypoplastic " s and " not well defined " s.

, don't " what-if " yourself (I know it's like saying " don't blink " ).

You do the best you can with the knowlege you have at the time. That's all

anyone can ask of you--it's all you can ask of yourself.

(mom to Evan, 16 months)

Michele Westmaas wrote: