RE: Just had a baby with charge

February 27, 2006

HI Sue, welcome to the group, you will find so much support and information

here.

There is no question the beginning is rough. But you will find that CHARGE

children are the most loving and reslient children.

My daughter, is 10, we live on Long Island. is followed mainly

at Columbia Babies and NYU in NYC. She was trached until 2 years ago. She

still has a feeding tube. If it wasn't for the trach I am not sure she would

have made it. It was a big decision to put hers in. She was still in the

NICU at the time and it really scared us. But it is now out!

Feel free to contact me if you would like to talk more.

Cathie, mom to

February 27, 2006

Dear Sue ,

I am mom to JO-JO 2 & 1/2 CHARGER ,one of the most beautiful I have

ever known , open heart, he has been trached since 8 months and almost

completely deaf & blind, He has a 4 year old & a 1year old sister .We have all

adjusted in ways always as a family, we keep our boundries with others and

their

opinions,I rarely write here, but I was moved by you. My thoughts are with you

and your baby. I found a lot of comfort being with my son all the time and I

pumped for 6 months,it was one way i could help, Today he is a happy boy ,

but yes it is a long strange, growing expierience,. Best thoughts, Gwendelyn

February 28, 2006

cathis iw ant to echo ur wordds lol yes very rough very rough in soem cases

but very inspiring to just enjoy ur little one and she will amaze you in so

many ways hugs ellen 20 year old charger in aus

>

> HI Sue, welcome to the group, you will find so much support and

> information

> here.

> There is no question the beginning is rough. But you will find

> that CHARGE

> children are the most loving and reslient children.

> My daughter, is 10, we live on Long Island. is

> followed mainly

> at Columbia Babies and NYU in NYC. She was trached until 2

> years ago. She

> still has a feeding tube. If it wasn't for the trach I am not sure she

> would

> have made it. It was a big decision to put hers in. She was still in

> the

> NICU at the time and it really scared us. But it is now out!

>

> Feel free to contact me if you would like to talk more.

> Cathie, mom to

>

February 28, 2006

Hi Sue--

Welcome to our charge family. There are a few NJ families here who post more

often than I do--and who probably live closer to you than I do--but if you'd

like to talk, just give me a call.

Joanne

mom to Eddie-6

Edison, NJ

February 28, 2006

Ellen,

you are an amazing person!!!

pam

Pamela J. , M.A., CAGS

Licensed Educational Psychologist

Perkins School for the Blind, Deafblind Program

175 North Beacon St.

Watertown, MA 02472

> ----------

> From: CHARGE on behalf of ellen howe

> Reply To: CHARGE

> Sent: Monday, February 27, 2006 11:16 PM

> To: CHARGE

> Subject: Re: Just had a baby with charge

>

> cathis iw ant to echo ur wordds lol yes very rough very rough in soem cases

> but very inspiring to just enjoy ur little one and she will amaze you in so

> many ways hugs ellen 20 year old charger in aus

>

> >

> > HI Sue, welcome to the group, you will find so much support and

> > information

> > here.

> > There is no question the beginning is rough. But you will find

> > that CHARGE

> > children are the most loving and reslient children.

> > My daughter, is 10, we live on Long Island. is

> > followed mainly

> > at Columbia Babies and NYU in NYC. She was trached until 2

> > years ago. She

> > still has a feeding tube. If it wasn't for the trach I am not sure she

> > would

> > have made it. It was a big decision to put hers in. She was still in

> > the

> > NICU at the time and it really scared us. But it is now out!

> >

> > Feel free to contact me if you would like to talk more.

> > Cathie, mom to

> >

February 28, 2006

Thank you so much for your words of comfort and encouragement. Although in my

heart, I sometimes still puzzle if one day when I looked at Keira, if I would

say to her that I should have fought for to let you go instead of seeing you

having such a tough life. I don't know if any of you ever had that thought.

Sue

Re: Just had a baby with charge

>

> cathis iw ant to echo ur wordds lol yes very rough very rough in soem cases

> but very inspiring to just enjoy ur little one and she will amaze you in so

> many ways hugs ellen 20 year old charger in aus

>

> >

> > HI Sue, welcome to the group, you will find so much support and

> > information

> > here.

> > There is no question the beginning is rough. But you will find

> > that CHARGE

> > children are the most loving and reslient children.

> > My daughter, is 10, we live on Long Island. is

> > followed mainly

> > at Columbia Babies and NYU in NYC. She was trached until 2

> > years ago. She

> > still has a feeding tube. If it wasn't for the trach I am not sure she

> > would

> > have made it. It was a big decision to put hers in. She was still in

> > the

> > NICU at the time and it really scared us. But it is now out!

> >

> > Feel free to contact me if you would like to talk more.

> > Cathie, mom to

> >

February 28, 2006

Hi Joanne, That is great. I sure do need tons of help and support to get this

lift time project started. Is there any good time I can call you?

Sue

Re: Just had a baby with charge

Hi Sue--

Welcome to our charge family. There are a few NJ families here who post more

often than I do--and who probably live closer to you than I do--but if you'd

like to talk, just give me a call.

Joanne

mom to Eddie-6

Edison, NJ

February 28, 2006

Sue,

Welcome to the CHARGE family.

For those of us on the list, our children have survived those early medical

days and become such courageous, joyful, wise people that I venture to guess

that most of us would say to have them here and to experience life with them

is so well worth any pain they or we might have experienced. The joy is so

much greater and it seems that our children are joyful as well, certainly

not miserable people. Our children have been able to get past it.

There are so many parents here who have had to face these questions head on

- we had no idea that it was possible for a baby to endure so much medically

and still live to be such a vibrant person. Talk about awe! There are also

many parents who have recently or who are still going through these medical

times, and I hope you will connect with them.

I hope Amy does not mind, but I hope you go to the blog she created to keep

family and friends updated about her son Max. I know you will relate to the

ups and downs, but also find hope in that Max is now at home and doing

well!!!!! www.maxupdate.blogspot.com

Then I feel compelled to also bring up the small chance we all fear, is our

child one of the few who will not make it past those early medical troubles?

I know we all have the fear, and we all wonder if our child's life will be

worth living, because it all sounds so bad " on paper " when you list all that

is wrong initially; then somehow we make it through, and our lives become

our lives - filled with joy and pain, and ups and downs like all families

have, ours just involve CHARGE. I do not know which way it will be with

your child, but I want to offer you that if your child is strong enough to

make it through medically then I have not yet met anyone who did not think

it was worth the fight.

Kim L

Mom to Dylan who is 9 1/2 with CHARGE, Kayla 15, and Tyler nearly 18.

> Thank you so much for your words of comfort and encouragement. Although in my

> heart, I sometimes still puzzle if one day when I looked at Keira, if I would

> say to her that I should have fought for to let you go instead of seeing you

> having such a tough life. I don't know if any of you ever had that thought.

>

> Sue

>

> Re: Just had a baby with charge

>>

>> cathis iw ant to echo ur wordds lol yes very rough very rough in soem cases

>> but very inspiring to just enjoy ur little one and she will amaze you in so

>> many ways hugs ellen 20 year old charger in aus

>>

>>>

>>> HI Sue, welcome to the group, you will find so much support and

>>> information

>>> here.

>>> There is no question the beginning is rough. But you will find

>>> that CHARGE

>>> children are the most loving and reslient children.

>>> My daughter, is 10, we live on Long Island. is

>>> followed mainly

>>> at Columbia Babies and NYU in NYC. She was trached until 2

>>> years ago. She

>>> still has a feeding tube. If it wasn't for the trach I am not sure she

>>> would

>>> have made it. It was a big decision to put hers in. She was still in

>>> the

>>> NICU at the time and it really scared us. But it is now out!

>>>

>>> Feel free to contact me if you would like to talk more.

>>> Cathie, mom to

>>>

February 28, 2006

Welcome Sue,

I have an 8 year old with CHARGE. He got a trach at 1

month for trachiomalacia. It was a scary idea to me

and my husband but it made my sons quality of life

much better. He no longer had to struggle to breath as

bad. You have found a great place for support and

answers to your many questions.

a mom to 8yr CHARGEr and Quintin 5 yr

seizure prone

--- newchargemom wrote:

> Hi Everyone,

>

> I just started reading some e-mails in this group.

> All your e-mails

> sound like life is so normal and there can still be

> time for

> relaxation. It is nice to see that.

>

> I just had a baby girl, Keira, two months ago who is

> a charge baby.

> She came with inner ear malformation, possible

> swallowing

> difficulties and airway issue (first was trachea

> web, then sugotal

> stenosis, and now the dr thinks it is

> tracheomalacia). She is still

> in the NICU.

>

> I think I am still in a stage of quite overwhelming

> and unsure what I

> should do next. Doctor wants to give her a trach,

> and I am not sure

> if the trach will come off one day thinking about

> charge is so

> complicated. I have been surfing on web to see how

> life can be for a

> charge child. And deep down I feel that a painful

> and rough journey

> is just started for her.

>

> I look forward to chat with you. Maybe I can

> eventually find a

> balance from this life change. By the way, we live

> in north New

> Jersey in US. Hopefully I can find some of you who

> may be near by.

>

> Sue

>

__________________________________________________

February 28, 2006

Hi a, Does still need the trach now? ENT said the trach usually off

by 36 to 60 moms. I have been doubting if this can be true for charge child.

Thanks. --Sue

Re: Just had a baby with charge

Welcome Sue,

I have an 8 year old with CHARGE. He got a trach at 1

month for trachiomalacia. It was a scary idea to me

and my husband but it made my sons quality of life

much better. He no longer had to struggle to breath as

bad. You have found a great place for support and

answers to your many questions.

a mom to 8yr CHARGEr and Quintin 5 yr

seizure prone

--- newchargemom wrote:

> Hi Everyone,

>

> I just started reading some e-mails in this group.

> All your e-mails

> sound like life is so normal and there can still be

> time for

> relaxation. It is nice to see that.

>

> I just had a baby girl, Keira, two months ago who is

> a charge baby.

> She came with inner ear malformation, possible

> swallowing

> difficulties and airway issue (first was trachea

> web, then sugotal

> stenosis, and now the dr thinks it is

> tracheomalacia). She is still

> in the NICU.

>

> I think I am still in a stage of quite overwhelming

> and unsure what I

> should do next. Doctor wants to give her a trach,

> and I am not sure

> if the trach will come off one day thinking about

> charge is so

> complicated. I have been surfing on web to see how

> life can be for a

> charge child. And deep down I feel that a painful

> and rough journey

> is just started for her.

>

> I look forward to chat with you. Maybe I can

> eventually find a

> balance from this life change. By the way, we live

> in north New

> Jersey in US. Hopefully I can find some of you who

> may be near by.

>

> Sue

>

__________________________________________________

February 28, 2006

Hi a, Does still need the trach now? ENT said the trach usually off

by 36 to 60 moms. I have been doubting if this can be true for charge child.

Thanks. --Sue

Re: Just had a baby with charge

Welcome Sue,

I have an 8 year old with CHARGE. He got a trach at 1

month for trachiomalacia. It was a scary idea to me

and my husband but it made my sons quality of life

much better. He no longer had to struggle to breath as

bad. You have found a great place for support and

answers to your many questions.

a mom to 8yr CHARGEr and Quintin 5 yr

seizure prone

--- newchargemom wrote:

> Hi Everyone,

>

> I just started reading some e-mails in this group.

> All your e-mails

> sound like life is so normal and there can still be

> time for

> relaxation. It is nice to see that.

>

> I just had a baby girl, Keira, two months ago who is

> a charge baby.

> She came with inner ear malformation, possible

> swallowing

> difficulties and airway issue (first was trachea

> web, then sugotal

> stenosis, and now the dr thinks it is

> tracheomalacia). She is still

> in the NICU.

>

> I think I am still in a stage of quite overwhelming

> and unsure what I

> should do next. Doctor wants to give her a trach,

> and I am not sure

> if the trach will come off one day thinking about

> charge is so

> complicated. I have been surfing on web to see how

> life can be for a

> charge child. And deep down I feel that a painful

> and rough journey

> is just started for her.

>

> I look forward to chat with you. Maybe I can

> eventually find a

> balance from this life change. By the way, we live

> in north New

> Jersey in US. Hopefully I can find some of you who

> may be near by.

>

> Sue

>

__________________________________________________

February 28, 2006

For he is still trach dependent. His ENT is in

no rush to remove the trach and neither am I. He still

asperates his secreations. The one thing I will sugest

is that if your daughter does get a trach you refuse

to leave the hospital until you are approved for home

nursing care and have it set up. It has been a life

saver for us because your child will need 24 hour care

and that is too much for you to do without outside

help. It is a little hard to get used to in the

beginning but we have had them for 8 years so it is

not so hard. I know that others who have had thachs

have only had them a little while. Good luck with your

desision it is a hard one but what ever you do follow

your heart.

a mom to 8yr CHARGEr and Quintin 5yr

seizure prone

--- Kongyin So wrote:

> Hi a, Does still need the trach now?

> ENT said the trach usually off by 36 to 60 moms. I

> have been doubting if this can be true for charge

> child. Thanks. --Sue

>

> Re: Just had a baby with charge

>

> Welcome Sue,

> I have an 8 year old with CHARGE. He got a trach at

> 1

> month for trachiomalacia. It was a scary idea to me

> and my husband but it made my sons quality of life

> much better. He no longer had to struggle to breath

> as

> bad. You have found a great place for support and

> answers to your many questions.

> a mom to 8yr CHARGEr and Quintin 5 yr

> seizure prone

>

> --- newchargemom wrote:

>

> > Hi Everyone,

> >

> > I just started reading some e-mails in this group.

> > All your e-mails

> > sound like life is so normal and there can still

> be

> > time for

> > relaxation. It is nice to see that.

> >

> > I just had a baby girl, Keira, two months ago who

> is

> > a charge baby.

> > She came with inner ear malformation, possible

> > swallowing

> > difficulties and airway issue (first was trachea

> > web, then sugotal

> > stenosis, and now the dr thinks it is

> > tracheomalacia). She is still

> > in the NICU.

> >

> > I think I am still in a stage of quite

> overwhelming

> > and unsure what I

> > should do next. Doctor wants to give her a trach,

> > and I am not sure

> > if the trach will come off one day thinking about

> > charge is so

> > complicated. I have been surfing on web to see

> how

> > life can be for a

> > charge child. And deep down I feel that a painful

> > and rough journey

> > is just started for her.

> >

> > I look forward to chat with you. Maybe I can

> > eventually find a

> > balance from this life change. By the way, we live

> > in north New

> > Jersey in US. Hopefully I can find some of you

> who

> > may be near by.

> >

> > Sue

> >

>

> __________________________________________________

>

February 28, 2006

For he is still trach dependent. His ENT is in

no rush to remove the trach and neither am I. He still

asperates his secreations. The one thing I will sugest

is that if your daughter does get a trach you refuse

to leave the hospital until you are approved for home

nursing care and have it set up. It has been a life

saver for us because your child will need 24 hour care

and that is too much for you to do without outside

help. It is a little hard to get used to in the

beginning but we have had them for 8 years so it is

not so hard. I know that others who have had thachs

have only had them a little while. Good luck with your

desision it is a hard one but what ever you do follow

your heart.

a mom to 8yr CHARGEr and Quintin 5yr

seizure prone

--- Kongyin So wrote:

> Hi a, Does still need the trach now?

> ENT said the trach usually off by 36 to 60 moms. I

> have been doubting if this can be true for charge

> child. Thanks. --Sue

>

> Re: Just had a baby with charge

>

> Welcome Sue,

> I have an 8 year old with CHARGE. He got a trach at

> 1

> month for trachiomalacia. It was a scary idea to me

> and my husband but it made my sons quality of life

> much better. He no longer had to struggle to breath

> as

> bad. You have found a great place for support and

> answers to your many questions.

> a mom to 8yr CHARGEr and Quintin 5 yr

> seizure prone

>

> --- newchargemom wrote:

>

> > Hi Everyone,

> >

> > I just started reading some e-mails in this group.

> > All your e-mails

> > sound like life is so normal and there can still

> be

> > time for

> > relaxation. It is nice to see that.

> >

> > I just had a baby girl, Keira, two months ago who

> is

> > a charge baby.

> > She came with inner ear malformation, possible

> > swallowing

> > difficulties and airway issue (first was trachea

> > web, then sugotal

> > stenosis, and now the dr thinks it is

> > tracheomalacia). She is still

> > in the NICU.

> >

> > I think I am still in a stage of quite

> overwhelming

> > and unsure what I

> > should do next. Doctor wants to give her a trach,

> > and I am not sure

> > if the trach will come off one day thinking about

> > charge is so

> > complicated. I have been surfing on web to see

> how

> > life can be for a

> > charge child. And deep down I feel that a painful

> > and rough journey

> > is just started for her.

> >

> > I look forward to chat with you. Maybe I can

> > eventually find a

> > balance from this life change. By the way, we live

> > in north New

> > Jersey in US. Hopefully I can find some of you

> who

> > may be near by.

> >

> > Sue

> >

>

> __________________________________________________

>

February 28, 2006

Sue,

My baby was in the hospital for the first six months and the doctors often

discussed him getting a trach due to his preemie lungs and some CHARGE related

breathing issues. He was having a very difficult time. We pushed forward with

his heart surgery b/c they decided he needed the trach, but then post surgery he

was doing better and now he is home on O2...but not a trach. SOME TIMES the

kiddos can grow out of needing one...you never know. But what I do remember

very clearly is that the docs always reminded me that when a child needs one,

you will see dramatic improvement developmentally once they can breathe easier

and that they have yet to meet a parent who regrets getting a trach.

If you want to see my lil' guy and have some hope for how well they do post

hospital, my blog is maxupdate.blogspot.com. Hope it can provide you some

encouragement!!!

Amy

Victor Villarreal wrote:

For he is still trach dependent. His ENT is in

no rush to remove the trach and neither am I. He still

asperates his secreations. The one thing I will sugest

is that if your daughter does get a trach you refuse

to leave the hospital until you are approved for home

nursing care and have it set up. It has been a life

saver for us because your child will need 24 hour care

and that is too much for you to do without outside

help. It is a little hard to get used to in the

beginning but we have had them for 8 years so it is

not so hard. I know that others who have had thachs

have only had them a little while. Good luck with your

desision it is a hard one but what ever you do follow

your heart.

a mom to 8yr CHARGEr and Quintin 5yr

seizure prone

--- Kongyin So wrote:

> Hi a, Does still need the trach now?

> ENT said the trach usually off by 36 to 60 moms. I

> have been doubting if this can be true for charge

> child. Thanks. --Sue

>

> Re: Just had a baby with charge

>

> Welcome Sue,

> I have an 8 year old with CHARGE. He got a trach at

> 1

> month for trachiomalacia. It was a scary idea to me

> and my husband but it made my sons quality of life

> much better. He no longer had to struggle to breath

> as

> bad. You have found a great place for support and

> answers to your many questions.

> a mom to 8yr CHARGEr and Quintin 5 yr

> seizure prone

>

> --- newchargemom wrote:

>

> > Hi Everyone,

> >

> > I just started reading some e-mails in this group.

> > All your e-mails

> > sound like life is so normal and there can still

> be

> > time for

> > relaxation. It is nice to see that.

> >

> > I just had a baby girl, Keira, two months ago who

> is

> > a charge baby.

> > She came with inner ear malformation, possible

> > swallowing

> > difficulties and airway issue (first was trachea

> > web, then sugotal

> > stenosis, and now the dr thinks it is

> > tracheomalacia). She is still

> > in the NICU.

> >

> > I think I am still in a stage of quite

> overwhelming

> > and unsure what I

> > should do next. Doctor wants to give her a trach,

> > and I am not sure

> > if the trach will come off one day thinking about

> > charge is so

> > complicated. I have been surfing on web to see

> how

> > life can be for a

> > charge child. And deep down I feel that a painful

> > and rough journey

> > is just started for her.

> >

> > I look forward to chat with you. Maybe I can

> > eventually find a

> > balance from this life change. By the way, we live

> > in north New

> > Jersey in US. Hopefully I can find some of you

> who

> > may be near by.

> >

> > Sue

> >

>

> __________________________________________________

>

February 28, 2006