Re: connexin 26 - humor me

[Guest guest]

Hi - I enjoyed your post so much. Both my boys have hearing loss,

as you guys know. Tom's hearing loss was discovered after we had Sam so

I can't imagine the struggle some of you guys are going through about

genetics and having other children.

I will say that 10-1/2 years after Tom's diagnosis, having both my kids

with the same thing actually makes it easier. I know that sounds crazy

- and realize when I was pregnant with the two of them, I was thinking

" oh, they'll be blondes with blue eyes and have a hearing loss " but you

know, it's so cool the way they support each other. We joke that Tom

(our older son) is the " trailblazer " . He breaks the teachers in, had

his implant first, etc. Given Tom's personality, that works. Tom went

to a get-together of deaf teens awhile back. He loved it - really

enjoyed meeting other teens similar to him. At one point he said " You

know, Mom, I'm the only kid in the group who has a brother or sister

with hearing loss - I'm really lucky to have Sam! " . I wasn't sure if I

should cry or record his conversation!

So there definitely are pots of gold at the end of rainbows I think...

Barbara

Kearns wrote:

> Hi Alison. My son, , went through the genetic counseling/testing when he

was an infant and his hearing loss was diagnosed. The cause of his loss was not

determined. He did not have the connexin 26 gene. We have no family history.

We had a normal pregnancy, two weeks past due date and C-section. No illness

during pregnancy. It's a mystery but I don't dwell on it because it doesn't

make any difference in what we do.

> I do remember considering if I wanted another child. If it was discovered

that we had the connexin 26 I don't know how that would effect my decision. I

didn't want another child with hearing loss but the more I thought about it I

realized there was always that chance whether we had a percentage number or a

cause for 's loss. Even though he didn't test positive for connexin I still

felt that my second born could have a hearing loss. Just because we didn't know

the cause didn't mean there wasn't a chance that hearing loss would come up or

something else. I suppose there is always a chance that something could happen

and we usually don't think about that when we're pregnant. At least I didn't.

> My second son passed his newborn hearing screen. He still wasn't talking at

two years old and had an ABR. He passed that. He started speech therapy. He

was diagnosed with verbal apraxia. It was so strange that I had a deaf son that

wouldn't stop talking and a hearing son that had no words and picked up sign

faster than ever did. Turned out the apraxia wasn't an accurate diagnosis.

He was just severely speech delayed and had some oral motor issues. He's doing

well now. He also has eczema and has numerous food allergies.

> I joked this weekend when I went to a family celebration. Most women were

carrying around small decorative purses. My bag was bulging with a camera, CI

back up supplies, batteries, epi-pens, benedryl, albuterol, and two pieces of

homemade egg-free birthday cake for my allergic son. I think the only thing for

me was a small lipstick!

> So you never know. I have two " special needs " children with no family history

or known cause for their issues. With my odds I get worried what would happen

if I tried for a third!

> My feelings about my son's hearing loss changed from the initial diagnosis to

now. He is amazing and hearing loss does not seem like such a terrible obstacle

for me as a parent.

>

> K

> (5.5 years, CI and hearing aid) and (4 years, hearing and talking)

>

>

[Guest guest]

Geez - make that I was NOT thinking " oh, they'll be blondes... "

More coffee, please!

Barbara Mellert wrote:

> Hi - I enjoyed your post so much. Both my boys have hearing loss,

> as you guys know. Tom's hearing loss was discovered after we had Sam so

> I can't imagine the struggle some of you guys are going through about

> genetics and having other children.

>

> I will say that 10-1/2 years after Tom's diagnosis, having both my kids

> with the same thing actually makes it easier. I know that sounds crazy

> - and realize when I was pregnant with the two of them, I was thinking

> " oh, they'll be blondes with blue eyes and have a hearing loss " but you

> know, it's so cool the way they support each other. We joke that Tom

> (our older son) is the " trailblazer " . He breaks the teachers in, had

> his implant first, etc. Given Tom's personality, that works. Tom went

> to a get-together of deaf teens awhile back. He loved it - really

> enjoyed meeting other teens similar to him. At one point he said " You

> know, Mom, I'm the only kid in the group who has a brother or sister

> with hearing loss - I'm really lucky to have Sam! " . I wasn't sure if I

> should cry or record his conversation!

>

> So there definitely are pots of gold at the end of rainbows I think...

>

> Barbara

>

> Kearns wrote:

>

>> Hi Alison. My son, , went through the genetic counseling/testing when he

was an infant and his hearing loss was diagnosed. The cause of his loss was not

determined. He did not have the connexin 26 gene. We have no family history.

We had a normal pregnancy, two weeks past due date and C-section. No illness

during pregnancy. It's a mystery but I don't dwell on it because it doesn't

make any difference in what we do.

>> I do remember considering if I wanted another child. If it was discovered

that we had the connexin 26 I don't know how that would effect my decision. I

didn't want another child with hearing loss but the more I thought about it I

realized there was always that chance whether we had a percentage number or a

cause for 's loss. Even though he didn't test positive for connexin I still

felt that my second born could have a hearing loss. Just because we didn't know

the cause didn't mean there wasn't a chance that hearing loss would come up or

something else. I suppose there is always a chance that something could happen

and we usually don't think about that when we're pregnant. At least I didn't.

>> My second son passed his newborn hearing screen. He still wasn't talking at

two years old and had an ABR. He passed that. He started speech therapy. He

was diagnosed with verbal apraxia. It was so strange that I had a deaf son that

wouldn't stop talking and a hearing son that had no words and picked up sign

faster than ever did. Turned out the apraxia wasn't an accurate diagnosis.

He was just severely speech delayed and had some oral motor issues. He's doing

well now. He also has eczema and has numerous food allergies.

>> I joked this weekend when I went to a family celebration. Most women were

carrying around small decorative purses. My bag was bulging with a camera, CI

back up supplies, batteries, epi-pens, benedryl, albuterol, and two pieces of

homemade egg-free birthday cake for my allergic son. I think the only thing for

me was a small lipstick!

>> So you never know. I have two " special needs " children with no family

history or known cause for their issues. With my odds I get worried what would

happen if I tried for a third!

>> My feelings about my son's hearing loss changed from the initial diagnosis to

now. He is amazing and hearing loss does not seem like such a terrible obstacle

for me as a parent.

>>

>> K

>> (5.5 years, CI and hearing aid) and (4 years, hearing and

talking)

>>

>>

[Guest guest]

In a message dated 7/25/2006 12:04:20 P.M. Eastern Daylight Time,

sandidevz@... writes:

To end my story, I am expecting my next child and I am happy to say that I

am having this child for my daughter's benefit, it is probably one of the

best gifts I can give her and I know she will be a wonderful big sister.

There are still many days I think about whether my next child will have be

HOH and I get a bit nervous, but, I just try to stay positive, enjoy the

pregnancy, I know this is the right thing for our family.

hope my story helps.

This is similar to our situation, except we didn't know about the hearing

loss. Ian had other issues as a baby. When he was just 6-weeks old, he had

surgery. Actually we needed to wait until he reached that age so it would be

safer. I was a wreck as only a new mother with her first-born can be. I won't

go

into details, nothing was really life threatening, but during the first 3

years of this kid's life, I saw all kinds of doctors making sure things stayed

non-life-threatening.

Still, I wanted another child because of my brother. He's my little brother

and he is the best. Without him, I basically don't have any immediate family

-- they're dysfunctional and totally bonkers. He and I were a team growing

up, we supported each other and helped each other. We still do even though we

live half a country apart. I wanted that for Ian.

My hubby is the youngest of three, and was happy with just one kid and would

gladly have had only Ian. He's not great with newborns -- the poor man

cannot function like I can on a small amount of sleep. But he agreed that a

sibling is important and he saw that it was very important to me. So we had

.

I knew that whatever had " gone wrong " during my pregnancy with Ian could

happen again simply because even now no one can tell what had happened, only

that it did. But I knew I could handle it if happened again and I didn't want

Ian to be an only child.

Perhaps my rationale is the selfish one, I wanted him to have what I had.

Honestly, I would have had three kids if I'd had my way, but that wasn't

possible. So we have our two.

Everyone has to make this call on their own, and for their own reasons but I

can honestly say that even had I know about the hearing loss, I would not

have skipped having a second child. Seeing my kids together, the way Ian looks

after his little sister, the way she gets in his way and yet he includes her

in things, the way she hates/adores/idolizes/resents him ... they are very

much like my brother and me. Best friends, confidants and rivals all at once.

And that's what I wanted for them. Had she been D/HOH, that would be fine too

.... we figured out how to handle that too. After a while, the D/HOH stuff

became second nature. Now they're just kids each with their own needs and

personalities. The D/HOH stuff isn't center stage anymore, the kids themselves

are.

Best -- Jill

[Guest guest]

Hi,

Although I often lurk on listen-up, I do not usually post, however, this

conversation is a " hot " topic in my family.

My daughter was diagnosed at 9 months with progressive SNHL in both ears, we

were shocked by the news (as so many of us are), specifically, since she was

born hearing (confirmed by an ABR). I am the type of person who needs

closure on everything that happens to me or my family so finding the reason

for her progressive loss was very important to me. We did CT scans, genetic

testing at 2 hospitals, and viral diagnosis and came up with CMV as the most

possible cause. With CMV, in order to have an accurate diagnosis, you have

to test the child within 6 weeks of birth, however, with our daughter at 9

months, under the care of a ID specialist, all signs led to CMV. To this

date, we are 90% confident I got CMV at the end of my pregnancy which caused

isolated progressive loss for our daughter.

Both my husband & I are very close to our siblings and always wanted to have

many children. After our daughter was diagnosed, our world changed and we

often found ourselves thinking she would be an only child, we were to scared

to have another child. Even though we felt this way, we would always feel

guilty about it because we know how wonderful it is to have siblings and to

have that support in your life. It was about 10 months ago where I realized

that we were being selfish about not having another child, yes, if the child

is hard of hearing, it will be harder for US, it would take more time &

commitment from OUR lives, yet, for my daughter, it would simply be another

child for her to play with, to love, and to have support from as they

grow-up together. Our daughter would benefit so much from having another

sibling in her life, even if the sibling is hard of hearing or has another

disability.

To end my story, I am expecting my next child and I am happy to say that I

am having this child for my daughter's benefit, it is probably one of the

best gifts I can give her and I know she will be a wonderful big sister.

There are still many days I think about whether my next child will have be

HOH and I get a bit nervous, but, I just try to stay positive, enjoy the

pregnancy, I know this is the right thing for our family.

hope my story helps.

Sandi

>

>Reply-To: Listen-Up

>To: Listen-Up

>Subject: Re: connexin 26 - humor me

>Date: Tue, 25 Jul 2006 09:38:01 -0400

>

>Hi - I enjoyed your post so much. Both my boys have hearing loss,

>as you guys know. Tom's hearing loss was discovered after we had Sam so

>I can't imagine the struggle some of you guys are going through about

>genetics and having other children.

>

>I will say that 10-1/2 years after Tom's diagnosis, having both my kids

>with the same thing actually makes it easier. I know that sounds crazy

>- and realize when I was pregnant with the two of them, I was thinking

> " oh, they'll be blondes with blue eyes and have a hearing loss " but you

>know, it's so cool the way they support each other. We joke that Tom

>(our older son) is the " trailblazer " . He breaks the teachers in, had

>his implant first, etc. Given Tom's personality, that works. Tom went

>to a get-together of deaf teens awhile back. He loved it - really

>enjoyed meeting other teens similar to him. At one point he said " You

>know, Mom, I'm the only kid in the group who has a brother or sister

>with hearing loss - I'm really lucky to have Sam! " . I wasn't sure if I

>should cry or record his conversation!

>

>So there definitely are pots of gold at the end of rainbows I think...

>

>Barbara

>

> Kearns wrote:

> > Hi Alison. My son, , went through the genetic counseling/testing

>when he was an infant and his hearing loss was diagnosed. The cause of his

>loss was not determined. He did not have the connexin 26 gene. We have no

>family history. We had a normal pregnancy, two weeks past due date and

>C-section. No illness during pregnancy. It's a mystery but I don't dwell

>on it because it doesn't make any difference in what we do.

> > I do remember considering if I wanted another child. If it was

>discovered that we had the connexin 26 I don't know how that would effect

>my decision. I didn't want another child with hearing loss but the more I

>thought about it I realized there was always that chance whether we had a

>percentage number or a cause for 's loss. Even though he didn't test

>positive for connexin I still felt that my second born could have a hearing

>loss. Just because we didn't know the cause didn't mean there wasn't a

>chance that hearing loss would come up or something else. I suppose there

>is always a chance that something could happen and we usually don't think

>about that when we're pregnant. At least I didn't.

> > My second son passed his newborn hearing screen. He still wasn't

>talking at two years old and had an ABR. He passed that. He started

>speech therapy. He was diagnosed with verbal apraxia. It was so strange

>that I had a deaf son that wouldn't stop talking and a hearing son that had

>no words and picked up sign faster than ever did. Turned out the

>apraxia wasn't an accurate diagnosis. He was just severely speech delayed

>and had some oral motor issues. He's doing well now. He also has eczema

>and has numerous food allergies.

> > I joked this weekend when I went to a family celebration. Most women

>were carrying around small decorative purses. My bag was bulging with a

>camera, CI back up supplies, batteries, epi-pens, benedryl, albuterol, and

>two pieces of homemade egg-free birthday cake for my allergic son. I think

>the only thing for me was a small lipstick!

> > So you never know. I have two " special needs " children with no family

>history or known cause for their issues. With my odds I get worried what

>would happen if I tried for a third!

> > My feelings about my son's hearing loss changed from the initial

>diagnosis to now. He is amazing and hearing loss does not seem like such a

>terrible obstacle for me as a parent.

> >

> > K

> > (5.5 years, CI and hearing aid) and (4 years, hearing and

>talking)

> >

> >

[Guest guest]

In a message dated 7/25/2006 4:27:34 P.M. Eastern Daylight Time,

aldelgaudio@... writes:

We've only been dealing with this for two years and as some of you know, it

is VERY difficult to test children's hearing. It has been nothing short of a

nightmare. ... I envy the strength of some of you...I hope to one day be

where you are.

And my response to you was based on 8+ years of having a D/HOH child, plus

our " new baby " is now 12. It's so easy to see some things from my perspective

(looking backwards) that perhaps it's unfair to share. I know it wasn't

strength at the time I made my decision, it was a hope that I made into a

certainty because I needed to feel certain. A more apt description would

probably be

to call it a leap of faith with my fingers crossed just in case.

That's why you two are the only ones to decide what you're capable of and

more importantly what you're ready for. Maybe for right now, having Lucy and

getting use to what I called " our new reality " is as much as you can take on.

Perhaps a new baby gets put off for a little while. That doesn't mean you have

to say there's never going to be one.

When Ian was a baby and we were dealing with all the doctors, my answer to

my family's " when the next one coming? " was: When pigs fly! I knew in my

heart that I wanted more than one kid, but honestly, I couldn't even consider

another one just yet. He was about 2½ when I stared to seriously consider the

possibility. At that point, the constant doctor visits had basically stopped

and life had become somewhat normal.

For us " at some point but just not now " was the perfect answer. Personally,

I preferred " when pigs fly " but that's my sarcastic self shining through.

Apparently I said it quite often. (grin)

Even after deciding we wanted another child, I still put off getting

pregnant just a bit longer. My reason for having 4 years between kids: I

couldn't

stand the idea of having two in diapers at the same time. (Talk about a selfish

reason!) I wanted Ian to be a little bit independent before adding a new

baby to the mix. So, when I got pregnant with , Ian was potty trained and

in the 3-year-old class at nursery school. And the year she was born, he was

halfway through the 4-year-old class.

Please don't feel rushed to make a decision on this topic. You've got a lot

of things to consider and it's not something to decide when life feels

out-of-control..

Hugs to you -- Jill

PS: When was born, my husband's aunt sent us a card with a picture of

a flying pig on the front and she wrote: " I understand that pigs can now fly

in New York, I can't wait to see them. Congratulations. " (grin)

[Guest guest]

In a message dated 7/25/2006 4:27:34 P.M. Eastern Daylight Time,

aldelgaudio@... writes:

We've only been dealing with this for two years and as some of you know, it

is VERY difficult to test children's hearing. It has been nothing short of a

nightmare. ... I envy the strength of some of you...I hope to one day be

where you are.

And my response to you was based on 8+ years of having a D/HOH child, plus

our " new baby " is now 12. It's so easy to see some things from my perspective

(looking backwards) that perhaps it's unfair to share. I know it wasn't

strength at the time I made my decision, it was a hope that I made into a

certainty because I needed to feel certain. A more apt description would

probably be

to call it a leap of faith with my fingers crossed just in case.

That's why you two are the only ones to decide what you're capable of and

more importantly what you're ready for. Maybe for right now, having Lucy and

getting use to what I called " our new reality " is as much as you can take on.

Perhaps a new baby gets put off for a little while. That doesn't mean you have

to say there's never going to be one.

When Ian was a baby and we were dealing with all the doctors, my answer to

my family's " when the next one coming? " was: When pigs fly! I knew in my

heart that I wanted more than one kid, but honestly, I couldn't even consider

another one just yet. He was about 2½ when I stared to seriously consider the

possibility. At that point, the constant doctor visits had basically stopped

and life had become somewhat normal.

For us " at some point but just not now " was the perfect answer. Personally,

I preferred " when pigs fly " but that's my sarcastic self shining through.

Apparently I said it quite often. (grin)

Even after deciding we wanted another child, I still put off getting

pregnant just a bit longer. My reason for having 4 years between kids: I

couldn't

stand the idea of having two in diapers at the same time. (Talk about a selfish

reason!) I wanted Ian to be a little bit independent before adding a new

baby to the mix. So, when I got pregnant with , Ian was potty trained and

in the 3-year-old class at nursery school. And the year she was born, he was

halfway through the 4-year-old class.

Please don't feel rushed to make a decision on this topic. You've got a lot

of things to consider and it's not something to decide when life feels

out-of-control..

Hugs to you -- Jill

PS: When was born, my husband's aunt sent us a card with a picture of

a flying pig on the front and she wrote: " I understand that pigs can now fly

in New York, I can't wait to see them. Congratulations. " (grin)

[Guest guest]

In a message dated 7/25/2006 4:27:34 P.M. Eastern Daylight Time,

aldelgaudio@... writes:

We've only been dealing with this for two years and as some of you know, it

is VERY difficult to test children's hearing. It has been nothing short of a

nightmare. ... I envy the strength of some of you...I hope to one day be

where you are.

And my response to you was based on 8+ years of having a D/HOH child, plus

our " new baby " is now 12. It's so easy to see some things from my perspective

(looking backwards) that perhaps it's unfair to share. I know it wasn't

strength at the time I made my decision, it was a hope that I made into a

certainty because I needed to feel certain. A more apt description would

probably be

to call it a leap of faith with my fingers crossed just in case.

That's why you two are the only ones to decide what you're capable of and

more importantly what you're ready for. Maybe for right now, having Lucy and

getting use to what I called " our new reality " is as much as you can take on.

Perhaps a new baby gets put off for a little while. That doesn't mean you have

to say there's never going to be one.

When Ian was a baby and we were dealing with all the doctors, my answer to

my family's " when the next one coming? " was: When pigs fly! I knew in my

heart that I wanted more than one kid, but honestly, I couldn't even consider

another one just yet. He was about 2½ when I stared to seriously consider the

possibility. At that point, the constant doctor visits had basically stopped

and life had become somewhat normal.

For us " at some point but just not now " was the perfect answer. Personally,

I preferred " when pigs fly " but that's my sarcastic self shining through.

Apparently I said it quite often. (grin)

Even after deciding we wanted another child, I still put off getting

pregnant just a bit longer. My reason for having 4 years between kids: I

couldn't

stand the idea of having two in diapers at the same time. (Talk about a selfish

reason!) I wanted Ian to be a little bit independent before adding a new

baby to the mix. So, when I got pregnant with , Ian was potty trained and

in the 3-year-old class at nursery school. And the year she was born, he was

halfway through the 4-year-old class.

Please don't feel rushed to make a decision on this topic. You've got a lot

of things to consider and it's not something to decide when life feels

out-of-control..

Hugs to you -- Jill

PS: When was born, my husband's aunt sent us a card with a picture of

a flying pig on the front and she wrote: " I understand that pigs can now fly

in New York, I can't wait to see them. Congratulations. " (grin)

[Guest guest]

Maybe I'm so hesitant to have another baby if Lucy

tests positive for CX26 because hearing loss is still

so new to me. We've only been dealing with this for

two years and as some of you know, it is VERY

difficult to test children's hearing. It has been

nothing short of a nightmare.

I envy the strength of some of you...I hope to one day

be where you are.

Thanks for all the responses.

Alison

--- JillcWood@... wrote:

>

> In a message dated 7/25/2006 12:04:20 P.M. Eastern

> Daylight Time,

> sandidevz@... writes:

>

> To end my story, I am expecting my next child and I

> am happy to say that I

> am having this child for my daughter's benefit, it

> is probably one of the

> best gifts I can give her and I know she will be a

> wonderful big sister.

> There are still many days I think about whether my

> next child will have be

> HOH and I get a bit nervous, but, I just try to stay

> positive, enjoy the

> pregnancy, I know this is the right thing for our

> family.

> hope my story helps.

>

>

>

>

>

>

> This is similar to our situation, except we didn't

> know about the hearing

> loss. Ian had other issues as a baby. When he was

> just 6-weeks old, he had

> surgery. Actually we needed to wait until he reached

> that age so it would be

> safer. I was a wreck as only a new mother with her

> first-born can be. I won't go

> into details, nothing was really life threatening,

> but during the first 3

> years of this kid's life, I saw all kinds of doctors

> making sure things stayed

> non-life-threatening.

>

> Still, I wanted another child because of my brother.

> He's my little brother

> and he is the best. Without him, I basically don't

> have any immediate family

> -- they're dysfunctional and totally bonkers. He and

> I were a team growing

> up, we supported each other and helped each other.

> We still do even though we

> live half a country apart. I wanted that for Ian.

>

> My hubby is the youngest of three, and was happy

> with just one kid and would

> gladly have had only Ian. He's not great with

> newborns -- the poor man

> cannot function like I can on a small amount of

> sleep. But he agreed that a

> sibling is important and he saw that it was very

> important to me. So we had .

>

> I knew that whatever had " gone wrong " during my

> pregnancy with Ian could

> happen again simply because even now no one can tell

> what had happened, only

> that it did. But I knew I could handle it if

> happened again and I didn't want

> Ian to be an only child.

>

> Perhaps my rationale is the selfish one, I wanted

> him to have what I had.

> Honestly, I would have had three kids if I'd had my

> way, but that wasn't

> possible. So we have our two.

>

> Everyone has to make this call on their own, and for

> their own reasons but I

> can honestly say that even had I know about the

> hearing loss, I would not

> have skipped having a second child. Seeing my kids

> together, the way Ian looks

> after his little sister, the way she gets in his way

> and yet he includes her

> in things, the way she hates/adores/idolizes/resents

> him ... they are very

> much like my brother and me. Best friends,

> confidants and rivals all at once.

> And that's what I wanted for them. Had she been

> D/HOH, that would be fine too

> ... we figured out how to handle that too. After a

> while, the D/HOH stuff

> became second nature. Now they're just kids each

> with their own needs and

> personalities. The D/HOH stuff isn't center stage

> anymore, the kids themselves are.

>

> Best -- Jill

>

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________

[Guest guest]

Maybe I'm so hesitant to have another baby if Lucy

tests positive for CX26 because hearing loss is still

so new to me. We've only been dealing with this for

two years and as some of you know, it is VERY

difficult to test children's hearing. It has been

nothing short of a nightmare.

I envy the strength of some of you...I hope to one day

be where you are.

Thanks for all the responses.

Alison

--- JillcWood@... wrote:

>

> In a message dated 7/25/2006 12:04:20 P.M. Eastern

> Daylight Time,

> sandidevz@... writes:

>

> To end my story, I am expecting my next child and I

> am happy to say that I

> am having this child for my daughter's benefit, it

> is probably one of the

> best gifts I can give her and I know she will be a

> wonderful big sister.

> There are still many days I think about whether my

> next child will have be

> HOH and I get a bit nervous, but, I just try to stay

> positive, enjoy the

> pregnancy, I know this is the right thing for our

> family.

> hope my story helps.

>

>

>

>

>

>

> This is similar to our situation, except we didn't

> know about the hearing

> loss. Ian had other issues as a baby. When he was

> just 6-weeks old, he had

> surgery. Actually we needed to wait until he reached

> that age so it would be

> safer. I was a wreck as only a new mother with her

> first-born can be. I won't go

> into details, nothing was really life threatening,

> but during the first 3

> years of this kid's life, I saw all kinds of doctors

> making sure things stayed

> non-life-threatening.

>

> Still, I wanted another child because of my brother.

> He's my little brother

> and he is the best. Without him, I basically don't

> have any immediate family

> -- they're dysfunctional and totally bonkers. He and

> I were a team growing

> up, we supported each other and helped each other.

> We still do even though we

> live half a country apart. I wanted that for Ian.

>

> My hubby is the youngest of three, and was happy

> with just one kid and would

> gladly have had only Ian. He's not great with

> newborns -- the poor man

> cannot function like I can on a small amount of

> sleep. But he agreed that a

> sibling is important and he saw that it was very

> important to me. So we had .

>

> I knew that whatever had " gone wrong " during my

> pregnancy with Ian could

> happen again simply because even now no one can tell

> what had happened, only

> that it did. But I knew I could handle it if

> happened again and I didn't want

> Ian to be an only child.

>

> Perhaps my rationale is the selfish one, I wanted

> him to have what I had.

> Honestly, I would have had three kids if I'd had my

> way, but that wasn't

> possible. So we have our two.

>

> Everyone has to make this call on their own, and for

> their own reasons but I

> can honestly say that even had I know about the

> hearing loss, I would not

> have skipped having a second child. Seeing my kids

> together, the way Ian looks

> after his little sister, the way she gets in his way

> and yet he includes her

> in things, the way she hates/adores/idolizes/resents

> him ... they are very

> much like my brother and me. Best friends,

> confidants and rivals all at once.

> And that's what I wanted for them. Had she been

> D/HOH, that would be fine too

> ... we figured out how to handle that too. After a

> while, the D/HOH stuff

> became second nature. Now they're just kids each

> with their own needs and

> personalities. The D/HOH stuff isn't center stage

> anymore, the kids themselves are.

>

> Best -- Jill

>

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________

[Guest guest]

Maybe I'm so hesitant to have another baby if Lucy

tests positive for CX26 because hearing loss is still

so new to me. We've only been dealing with this for

two years and as some of you know, it is VERY

difficult to test children's hearing. It has been

nothing short of a nightmare.

I envy the strength of some of you...I hope to one day

be where you are.

Thanks for all the responses.

Alison

--- JillcWood@... wrote:

>

> In a message dated 7/25/2006 12:04:20 P.M. Eastern

> Daylight Time,

> sandidevz@... writes:

>

> To end my story, I am expecting my next child and I

> am happy to say that I

> am having this child for my daughter's benefit, it

> is probably one of the

> best gifts I can give her and I know she will be a

> wonderful big sister.

> There are still many days I think about whether my

> next child will have be

> HOH and I get a bit nervous, but, I just try to stay

> positive, enjoy the

> pregnancy, I know this is the right thing for our

> family.

> hope my story helps.

>

>

>

>

>

>

> This is similar to our situation, except we didn't

> know about the hearing

> loss. Ian had other issues as a baby. When he was

> just 6-weeks old, he had

> surgery. Actually we needed to wait until he reached

> that age so it would be

> safer. I was a wreck as only a new mother with her

> first-born can be. I won't go

> into details, nothing was really life threatening,

> but during the first 3

> years of this kid's life, I saw all kinds of doctors

> making sure things stayed

> non-life-threatening.

>

> Still, I wanted another child because of my brother.

> He's my little brother

> and he is the best. Without him, I basically don't

> have any immediate family

> -- they're dysfunctional and totally bonkers. He and

> I were a team growing

> up, we supported each other and helped each other.

> We still do even though we

> live half a country apart. I wanted that for Ian.

>

> My hubby is the youngest of three, and was happy

> with just one kid and would

> gladly have had only Ian. He's not great with

> newborns -- the poor man

> cannot function like I can on a small amount of

> sleep. But he agreed that a

> sibling is important and he saw that it was very

> important to me. So we had .

>

> I knew that whatever had " gone wrong " during my

> pregnancy with Ian could

> happen again simply because even now no one can tell

> what had happened, only

> that it did. But I knew I could handle it if

> happened again and I didn't want

> Ian to be an only child.

>

> Perhaps my rationale is the selfish one, I wanted

> him to have what I had.

> Honestly, I would have had three kids if I'd had my

> way, but that wasn't

> possible. So we have our two.

>

> Everyone has to make this call on their own, and for

> their own reasons but I

> can honestly say that even had I know about the

> hearing loss, I would not

> have skipped having a second child. Seeing my kids

> together, the way Ian looks

> after his little sister, the way she gets in his way

> and yet he includes her

> in things, the way she hates/adores/idolizes/resents

> him ... they are very

> much like my brother and me. Best friends,

> confidants and rivals all at once.

> And that's what I wanted for them. Had she been

> D/HOH, that would be fine too

> ... we figured out how to handle that too. After a

> while, the D/HOH stuff

> became second nature. Now they're just kids each

> with their own needs and

> personalities. The D/HOH stuff isn't center stage

> anymore, the kids themselves are.

>

> Best -- Jill

>

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________

[Guest guest]

You know, Alison, I sure felt the same way you did back when first one

child, then my baby, were diagnosed with hearing loss. it was

overwhelming! I remember wondering how in the world were we going to

manage all those tiny earmolds and hearing aids. I was so worried about

my boys, too, fitting in with friends, etc. Now - so many years later -

it has become second nature more or less although I would say that sure,

it'd be easier if they could hear! I don't think it's as much strength

as resilience and just getting used to it if that makes sense? And of

course, neither of my boys were screened at birth. You're in a

difficult situation all the way around...

I did have a real " ah ha " moment awhile back when Tom got his new

hearing aids. We were late so he ran into audiology while I was

parking. When I got to the office, Tom was already with Cindy (our

audiologist) asking her questions about " this button and this switch "

and I'm thinking " wow, how much easier it is to fit new hearing aids to

a 10 year old than it was when he was 3! " . You'll see the same I

know... And should you decide to have another child and if that child

has hearing loss, it's so much easier with #2. Sam's always been the

beneficiary of Tom's trailblazing!

Take care

Hugs,

Barbara

Alison DelGaudio wrote:

> Maybe I'm so hesitant to have another baby if Lucy

> tests positive for CX26 because hearing loss is still

> so new to me. We've only been dealing with this for

> two years and as some of you know, it is VERY

> difficult to test children's hearing. It has been

> nothing short of a nightmare.

>

> I envy the strength of some of you...I hope to one day

> be where you are.

>

> Thanks for all the responses.

>

> Alison

>

>

>

> --- JillcWood@... wrote:

>

>

>>

>> In a message dated 7/25/2006 12:04:20 P.M. Eastern

>> Daylight Time,

>> sandidevz@... writes:

>>

>> To end my story, I am expecting my next child and I

>> am happy to say that I

>> am having this child for my daughter's benefit, it

>> is probably one of the

>> best gifts I can give her and I know she will be a

>> wonderful big sister.

>> There are still many days I think about whether my

>> next child will have be

>> HOH and I get a bit nervous, but, I just try to stay

>> positive, enjoy the

>> pregnancy, I know this is the right thing for our

>> family.

>> hope my story helps.

>>

>>

>>

>>

>>

>>

>> This is similar to our situation, except we didn't

>> know about the hearing

>> loss. Ian had other issues as a baby. When he was

>> just 6-weeks old, he had

>> surgery. Actually we needed to wait until he reached

>> that age so it would be

>> safer. I was a wreck as only a new mother with her

>> first-born can be. I won't go

>> into details, nothing was really life threatening,

>> but during the first 3

>> years of this kid's life, I saw all kinds of doctors

>> making sure things stayed

>> non-life-threatening.

>>

>> Still, I wanted another child because of my brother.

>> He's my little brother

>> and he is the best. Without him, I basically don't

>> have any immediate family

>> -- they're dysfunctional and totally bonkers. He and

>> I were a team growing

>> up, we supported each other and helped each other.

>> We still do even though we

>> live half a country apart. I wanted that for Ian.

>>

>> My hubby is the youngest of three, and was happy

>> with just one kid and would

>> gladly have had only Ian. He's not great with

>> newborns -- the poor man

>> cannot function like I can on a small amount of

>> sleep. But he agreed that a

>> sibling is important and he saw that it was very

>> important to me. So we had .

>>

>> I knew that whatever had " gone wrong " during my

>> pregnancy with Ian could

>> happen again simply because even now no one can tell

>> what had happened, only

>> that it did. But I knew I could handle it if

>> happened again and I didn't want

>> Ian to be an only child.

>>

>> Perhaps my rationale is the selfish one, I wanted

>> him to have what I had.

>> Honestly, I would have had three kids if I'd had my

>> way, but that wasn't

>> possible. So we have our two.

>>

>> Everyone has to make this call on their own, and for

>> their own reasons but I

>> can honestly say that even had I know about the

>> hearing loss, I would not

>> have skipped having a second child. Seeing my kids

>> together, the way Ian looks

>> after his little sister, the way she gets in his way

>> and yet he includes her

>> in things, the way she hates/adores/idolizes/resents

>> him ... they are very

>> much like my brother and me. Best friends,

>> confidants and rivals all at once.

>> And that's what I wanted for them. Had she been

>> D/HOH, that would be fine too

>> ... we figured out how to handle that too. After a

>> while, the D/HOH stuff

>> became second nature. Now they're just kids each

>> with their own needs and

>> personalities. The D/HOH stuff isn't center stage

>> anymore, the kids themselves are.

>>

>> Best -- Jill

>>

>>

>> [Non-text portions of this message have been

>> removed]

>>

>>

>>

>

>

> __________________________________________________

>

[Guest guest]

You know, Alison, I sure felt the same way you did back when first one

child, then my baby, were diagnosed with hearing loss. it was

overwhelming! I remember wondering how in the world were we going to

manage all those tiny earmolds and hearing aids. I was so worried about

my boys, too, fitting in with friends, etc. Now - so many years later -

it has become second nature more or less although I would say that sure,

it'd be easier if they could hear! I don't think it's as much strength

as resilience and just getting used to it if that makes sense? And of

course, neither of my boys were screened at birth. You're in a

difficult situation all the way around...

I did have a real " ah ha " moment awhile back when Tom got his new

hearing aids. We were late so he ran into audiology while I was

parking. When I got to the office, Tom was already with Cindy (our

audiologist) asking her questions about " this button and this switch "

and I'm thinking " wow, how much easier it is to fit new hearing aids to

a 10 year old than it was when he was 3! " . You'll see the same I

know... And should you decide to have another child and if that child

has hearing loss, it's so much easier with #2. Sam's always been the

beneficiary of Tom's trailblazing!

Take care

Hugs,

Barbara

Alison DelGaudio wrote:

> Maybe I'm so hesitant to have another baby if Lucy

> tests positive for CX26 because hearing loss is still

> so new to me. We've only been dealing with this for

> two years and as some of you know, it is VERY

> difficult to test children's hearing. It has been

> nothing short of a nightmare.

>

> I envy the strength of some of you...I hope to one day

> be where you are.

>

> Thanks for all the responses.

>

> Alison

>

>

>

> --- JillcWood@... wrote:

>

>

>>

>> In a message dated 7/25/2006 12:04:20 P.M. Eastern

>> Daylight Time,

>> sandidevz@... writes:

>>

>> To end my story, I am expecting my next child and I

>> am happy to say that I

>> am having this child for my daughter's benefit, it

>> is probably one of the

>> best gifts I can give her and I know she will be a

>> wonderful big sister.

>> There are still many days I think about whether my

>> next child will have be

>> HOH and I get a bit nervous, but, I just try to stay

>> positive, enjoy the

>> pregnancy, I know this is the right thing for our

>> family.

>> hope my story helps.

>>

>>

>>

>>

>>

>>

>> This is similar to our situation, except we didn't

>> know about the hearing

>> loss. Ian had other issues as a baby. When he was

>> just 6-weeks old, he had

>> surgery. Actually we needed to wait until he reached

>> that age so it would be

>> safer. I was a wreck as only a new mother with her

>> first-born can be. I won't go

>> into details, nothing was really life threatening,

>> but during the first 3

>> years of this kid's life, I saw all kinds of doctors

>> making sure things stayed

>> non-life-threatening.

>>

>> Still, I wanted another child because of my brother.

>> He's my little brother

>> and he is the best. Without him, I basically don't

>> have any immediate family

>> -- they're dysfunctional and totally bonkers. He and

>> I were a team growing

>> up, we supported each other and helped each other.

>> We still do even though we

>> live half a country apart. I wanted that for Ian.

>>

>> My hubby is the youngest of three, and was happy

>> with just one kid and would

>> gladly have had only Ian. He's not great with

>> newborns -- the poor man

>> cannot function like I can on a small amount of

>> sleep. But he agreed that a

>> sibling is important and he saw that it was very

>> important to me. So we had .

>>

>> I knew that whatever had " gone wrong " during my

>> pregnancy with Ian could

>> happen again simply because even now no one can tell

>> what had happened, only

>> that it did. But I knew I could handle it if

>> happened again and I didn't want

>> Ian to be an only child.

>>

>> Perhaps my rationale is the selfish one, I wanted

>> him to have what I had.

>> Honestly, I would have had three kids if I'd had my

>> way, but that wasn't

>> possible. So we have our two.

>>

>> Everyone has to make this call on their own, and for

>> their own reasons but I

>> can honestly say that even had I know about the

>> hearing loss, I would not

>> have skipped having a second child. Seeing my kids

>> together, the way Ian looks

>> after his little sister, the way she gets in his way

>> and yet he includes her

>> in things, the way she hates/adores/idolizes/resents

>> him ... they are very

>> much like my brother and me. Best friends,

>> confidants and rivals all at once.

>> And that's what I wanted for them. Had she been

>> D/HOH, that would be fine too

>> ... we figured out how to handle that too. After a

>> while, the D/HOH stuff

>> became second nature. Now they're just kids each

>> with their own needs and

>> personalities. The D/HOH stuff isn't center stage

>> anymore, the kids themselves are.

>>

>> Best -- Jill

>>

>>

>> [Non-text portions of this message have been

>> removed]

>>

>>

>>

>

>

> __________________________________________________

>

[Guest guest]

You know, Alison, I sure felt the same way you did back when first one

child, then my baby, were diagnosed with hearing loss. it was

overwhelming! I remember wondering how in the world were we going to

manage all those tiny earmolds and hearing aids. I was so worried about

my boys, too, fitting in with friends, etc. Now - so many years later -

it has become second nature more or less although I would say that sure,

it'd be easier if they could hear! I don't think it's as much strength

as resilience and just getting used to it if that makes sense? And of

course, neither of my boys were screened at birth. You're in a

difficult situation all the way around...

I did have a real " ah ha " moment awhile back when Tom got his new

hearing aids. We were late so he ran into audiology while I was

parking. When I got to the office, Tom was already with Cindy (our

audiologist) asking her questions about " this button and this switch "

and I'm thinking " wow, how much easier it is to fit new hearing aids to

a 10 year old than it was when he was 3! " . You'll see the same I

know... And should you decide to have another child and if that child

has hearing loss, it's so much easier with #2. Sam's always been the

beneficiary of Tom's trailblazing!

Take care

Hugs,

Barbara

Alison DelGaudio wrote:

> Maybe I'm so hesitant to have another baby if Lucy

> tests positive for CX26 because hearing loss is still

> so new to me. We've only been dealing with this for

> two years and as some of you know, it is VERY

> difficult to test children's hearing. It has been

> nothing short of a nightmare.

>

> I envy the strength of some of you...I hope to one day

> be where you are.

>

> Thanks for all the responses.

>

> Alison

>

>

>

> --- JillcWood@... wrote:

>

>

>>

>> In a message dated 7/25/2006 12:04:20 P.M. Eastern

>> Daylight Time,

>> sandidevz@... writes:

>>

>> To end my story, I am expecting my next child and I

>> am happy to say that I

>> am having this child for my daughter's benefit, it

>> is probably one of the

>> best gifts I can give her and I know she will be a

>> wonderful big sister.

>> There are still many days I think about whether my

>> next child will have be

>> HOH and I get a bit nervous, but, I just try to stay

>> positive, enjoy the

>> pregnancy, I know this is the right thing for our

>> family.

>> hope my story helps.

>>

>>

>>

>>

>>

>>

>> This is similar to our situation, except we didn't

>> know about the hearing

>> loss. Ian had other issues as a baby. When he was

>> just 6-weeks old, he had

>> surgery. Actually we needed to wait until he reached

>> that age so it would be

>> safer. I was a wreck as only a new mother with her

>> first-born can be. I won't go

>> into details, nothing was really life threatening,

>> but during the first 3

>> years of this kid's life, I saw all kinds of doctors

>> making sure things stayed

>> non-life-threatening.

>>

>> Still, I wanted another child because of my brother.

>> He's my little brother

>> and he is the best. Without him, I basically don't

>> have any immediate family

>> -- they're dysfunctional and totally bonkers. He and

>> I were a team growing

>> up, we supported each other and helped each other.

>> We still do even though we

>> live half a country apart. I wanted that for Ian.

>>

>> My hubby is the youngest of three, and was happy

>> with just one kid and would

>> gladly have had only Ian. He's not great with

>> newborns -- the poor man

>> cannot function like I can on a small amount of

>> sleep. But he agreed that a

>> sibling is important and he saw that it was very

>> important to me. So we had .

>>

>> I knew that whatever had " gone wrong " during my

>> pregnancy with Ian could

>> happen again simply because even now no one can tell

>> what had happened, only

>> that it did. But I knew I could handle it if

>> happened again and I didn't want

>> Ian to be an only child.

>>

>> Perhaps my rationale is the selfish one, I wanted

>> him to have what I had.

>> Honestly, I would have had three kids if I'd had my

>> way, but that wasn't

>> possible. So we have our two.

>>

>> Everyone has to make this call on their own, and for

>> their own reasons but I

>> can honestly say that even had I know about the

>> hearing loss, I would not

>> have skipped having a second child. Seeing my kids

>> together, the way Ian looks

>> after his little sister, the way she gets in his way

>> and yet he includes her

>> in things, the way she hates/adores/idolizes/resents

>> him ... they are very

>> much like my brother and me. Best friends,

>> confidants and rivals all at once.

>> And that's what I wanted for them. Had she been

>> D/HOH, that would be fine too

>> ... we figured out how to handle that too. After a

>> while, the D/HOH stuff

>> became second nature. Now they're just kids each

>> with their own needs and

>> personalities. The D/HOH stuff isn't center stage

>> anymore, the kids themselves are.

>>

>> Best -- Jill

>>

>>

>> [Non-text portions of this message have been

>> removed]

>>

>>

>>

>

>

> __________________________________________________

>

[Guest guest]

Alison,

I understand your fears and you aren't alone. My husband and I were

even shocked when our daughter was diagnosed with deafness. We are

both deaf since birth but don't have any deaf relatives except for my

far distant relative. We also have an older son with normal hearing.

Most of deaf parents I know have hearing children while most deaf

children have hearing parents.

We had a genetic test and our deafness causes are still not known. We

have 25% to 50% chances of having deaf children based on our history.

I thought of having a 3rd child but now I am not sure either because

both my husband and I work full time. It is sometimes difficult to

make the time for our daughter to participate in early intervention

programs. If I had stayed home full time, I would probably have a 3rd

child without any doubts. However, I'm satisfied with two happy

healthy kids for now.

Most deaf people I know have been happy and doing well. The next deaf

generation will probably do much better with all the new technology.

Your daughter will turn out fine when you receive all the support for

her special needs. Hope this helps.

Rita

>

> >

> > In a message dated 7/25/2006 12:04:20 P.M. Eastern

> > Daylight Time,

> > sandidevz@... writes:

> >

> > To end my story, I am expecting my next child and I

> > am happy to say that I

> > am having this child for my daughter's benefit, it

> > is probably one of the

> > best gifts I can give her and I know she will be a

> > wonderful big sister.

> > There are still many days I think about whether my

> > next child will have be

> > HOH and I get a bit nervous, but, I just try to stay

> > positive, enjoy the

> > pregnancy, I know this is the right thing for our

> > family.

> > hope my story helps.

> >

> >

> >

> >

> >

> >

> > This is similar to our situation, except we didn't

> > know about the hearing

> > loss. Ian had other issues as a baby. When he was

> > just 6-weeks old, he had

> > surgery. Actually we needed to wait until he reached

> > that age so it would be

> > safer. I was a wreck as only a new mother with her

> > first-born can be. I won't go

> > into details, nothing was really life threatening,

> > but during the first 3

> > years of this kid's life, I saw all kinds of doctors

> > making sure things stayed

> > non-life-threatening.

> >

> > Still, I wanted another child because of my brother.

> > He's my little brother

> > and he is the best. Without him, I basically don't

> > have any immediate family

> > -- they're dysfunctional and totally bonkers. He and

> > I were a team growing

> > up, we supported each other and helped each other.

> > We still do even though we

> > live half a country apart. I wanted that for Ian.

> >

> > My hubby is the youngest of three, and was happy

> > with just one kid and would

> > gladly have had only Ian. He's not great with

> > newborns -- the poor man

> > cannot function like I can on a small amount of

> > sleep. But he agreed that a

> > sibling is important and he saw that it was very

> > important to me. So we had .

> >

> > I knew that whatever had " gone wrong " during my

> > pregnancy with Ian could

> > happen again simply because even now no one can tell

> > what had happened, only

> > that it did. But I knew I could handle it if

> > happened again and I didn't want

> > Ian to be an only child.

> >

> > Perhaps my rationale is the selfish one, I wanted

> > him to have what I had.

> > Honestly, I would have had three kids if I'd had my

> > way, but that wasn't

> > possible. So we have our two.

> >

> > Everyone has to make this call on their own, and for

> > their own reasons but I

> > can honestly say that even had I know about the

> > hearing loss, I would not

> > have skipped having a second child. Seeing my kids

> > together, the way Ian looks

> > after his little sister, the way she gets in his way

> > and yet he includes her

> > in things, the way she hates/adores/idolizes/resents

> > him ... they are very

> > much like my brother and me. Best friends,

> > confidants and rivals all at once.

> > And that's what I wanted for them. Had she been

> > D/HOH, that would be fine too

> > ... we figured out how to handle that too. After a

> > while, the D/HOH stuff

> > became second nature. Now they're just kids each

> > with their own needs and

> > personalities. The D/HOH stuff isn't center stage

> > anymore, the kids themselves are.

> >

> > Best -- Jill

> >

> >

> > [Non-text portions of this message have been

> > removed]

> >

> >

>

>

> __________________________________________________

>

[Guest guest]

I also have 2 sons with hearing loss, almost 14yo and 11yo. We learned of

our older son's hearing loss after we'd had our younger son, and learned of

the younger son's hearing loss a short time later, after I'd become pregnant

with our dd. We didn't consider a genetic aspect until the younger son was

identified. By that time, the thought that our dd might then also have

hearing loss just meant that we'd have pink hearing aids in addition to the

red and blue pairs.

The boys are very close, and it's nice that they share this extra dimension

of being a sibling. Our dd is hearing, but wanted pink hearing aids to be

like her brothers. DD is often left out, I think it has more to do with

being a girl than being hearing. I wish she had a sister, but the

possibility of hearing loss isn't what stops us from having more children.

We eliminated the syndromal causes, but have not pursued genetic ones. We

may yet, if it can be determined that their losses will be progressive.

> Hi - I enjoyed your post so much. Both my boys have hearing loss,

> as you guys know. Tom's hearing loss was discovered after we had Sam so

> I can't imagine the struggle some of you guys are going through about

> genetics and having other children.