Re: CHARGE oldest children!

October 30, 2005

hup! hup! that would be us,

- age 16 - CHARGEr, Elliot 13, Ethan 11,

)

smiles~!

Yuka

CHARGE oldest children!

> (is, attention to this e-mail ..)

>

> I was wondering.... How many of you, or cases that you know, have *only*

> your OLDEST child with CHARGE and the rest healthy?

>

> Pat, mum to Aidan (CHARGE- 6 1/2 months old, 10 wk prem) - EIRE

>

October 30, 2005

Pat,

Our daughter was our first born with CHARGE and then 22 months later I had a

healthy son.I waited another seven years and had a healthy son again. With

our second born, I had a fetal echo done at 4 months because of my daughter

being born with a ASD, VSD, and PDA. A heart defect was detected in him and I

went on to have a level 2 sono which saw the same problem. I was told in my 4th

month of pregnancy that he was more than likely going to have Downs. I was

asked if we wanted to go through prenatal counseling, amnio, etc...and I

declined and said that I was going to have this baby no matter what, we managed

through with the CHARGE so we were ready for our next challenge. Five months

later, my son was born perfectly healthy. Our genetist and cardiologist came to

the hospital to check him out and he was fine....It's scary I know but you

will know when the time is right and I am so glad that I went on to have more

children.......

Tia

October 30, 2005

>

> (is, attention to this e-mail ..)

>

> I was wondering.... How many of you, or cases that you know, have

*only*

> your OLDEST child with CHARGE and the rest healthy?

>

> Pat, mum to Aidan (CHARGE- 6 1/2 months old, 10 wk prem) - EIRE

>

> _________________________________________________________________

> Descubre la descarga digital con MSN Music. Más de medio millón de

> canciones. http://music.msn.es/

>

I had three healthy children before Amelie all pregnancies healthy

no problems at all but with amelie i had gestational diabetes on

insulin injections three times daily and polyhydramnious fliud which

Weir explained to me obviosly Amelie has swallowing

difficulties and this is why the fluid was excessive. I there a link

with first babies then or is it coincidence?

Lesley x

October 30, 2005

Yes, I've noticed that most of the times the CHARGE child is the YOUNGEST!

with no further complications in previous pregnancies..

But what about daring to have more children after having your FIRST child

with CHARGE?? (my & is' fear..)

I just want to know that I won't be the first one to dare... LOL

.......... and that eventually turns out

well, with a healthy child!!!

Pat-

>

>Reply-To: CHARGE

>To: CHARGE

>Subject: Re: CHARGE oldest children!

>Date: Sun, 30 Oct 2005 19:17:32 -0000

>

> >

> > (is, attention to this e-mail ..)

> >

> > I was wondering.... How many of you, or cases that you know, have

>*only*

> > your OLDEST child with CHARGE and the rest healthy?

> >

> > Pat, mum to Aidan (CHARGE- 6 1/2 months old, 10 wk prem) - EIRE

> >

> > _________________________________________________________________

> > Descubre la descarga digital con MSN Music. Más de medio millón de

> > canciones. http://music.msn.es/

> >

>I had three healthy children before Amelie all pregnancies healthy

>no problems at all but with amelie i had gestational diabetes on

>insulin injections three times daily and polyhydramnious fliud which

> Weir explained to me obviosly Amelie has swallowing

>difficulties and this is why the fluid was excessive. I there a link

>with first babies then or is it coincidence?

>

>Lesley x

>

_________________________________________________________________

Un amor, una aventura, compañía para un viaje. Regístrate gratis en MSN Amor

& Amistad. http://match.msn.es/match/mt.cfm?pg=channel & tcid=162349

October 30, 2005

Thanks a lot, Yuka!

So it does happen, The Happy Ending!! ;-)

Pat - xxx

>

>Reply-To: CHARGE

>To: CHARGE

>Subject: RE: Re: CHARGE oldest children!

>Date: Sun, 30 Oct 2005 19:33:20 +0000

>

>Yes, I've noticed that most of the times the CHARGE child is the YOUNGEST!

>with no further complications in previous pregnancies..

>

>But what about daring to have more children after having your FIRST child

>with CHARGE?? (my & is' fear..)

>

>I just want to know that I won't be the first one to dare... LOL

> .......... and that eventually turns out

>well, with a healthy child!!!

>

>Pat-

>

> >

> >Reply-To: CHARGE

> >To: CHARGE

> >Subject: Re: CHARGE oldest children!

> >Date: Sun, 30 Oct 2005 19:17:32 -0000

> >

> > >

> > > (is, attention to this e-mail ..)

> > >

> > > I was wondering.... How many of you, or cases that you know, have

> >*only*

> > > your OLDEST child with CHARGE and the rest healthy?

> > >

> > > Pat, mum to Aidan (CHARGE- 6 1/2 months old, 10 wk prem) - EIRE

> > >

> > > _________________________________________________________________

> > > Descubre la descarga digital con MSN Music. Más de medio millón de

> > > canciones. http://music.msn.es/

> > >

> >I had three healthy children before Amelie all pregnancies healthy

> >no problems at all but with amelie i had gestational diabetes on

> >insulin injections three times daily and polyhydramnious fliud which

> > Weir explained to me obviosly Amelie has swallowing

> >difficulties and this is why the fluid was excessive. I there a link

> >with first babies then or is it coincidence?

> >

> >Lesley x

> >

>

>_________________________________________________________________

>Un amor, una aventura, compañía para un viaje. Regístrate gratis en MSN

>Amor

> & Amistad. http://match.msn.es/match/mt.cfm?pg=channel & tcid=162349

>

_________________________________________________________________

Un amor, una aventura, compañía para un viaje. Regístrate gratis en MSN Amor

& Amistad. http://match.msn.es/match/mt.cfm?pg=channel & tcid=162349

October 30, 2005

> > > >

> > > > (is, attention to this e-mail ..)

> > > >

> > > > I was wondering.... How many of you, or cases that you know,

have

> > >*only*

> > > > your OLDEST child with CHARGE and the rest healthy?

> > > >

> > > > Pat, mum to Aidan (CHARGE- 6 1/2 months old, 10 wk prem) -

EIRE

> > > >

_________________________________________________________________

> > > > Descubre la descarga digital con MSN Music. Más de medio

millón de

> > > > canciones. http://music.msn.es/

> > > >

> > >I had three healthy children before Amelie all pregnancies

healthy

> > >no problems at all but with amelie i had gestational diabetes on

> > >insulin injections three times daily and polyhydramnious fliud

which

> > > Weir explained to me obviosly Amelie has swallowing

> > >difficulties and this is why the fluid was excessive. I there a

link

> > >with first babies then or is it coincidence?

> > >

> > >Lesley x

> > >

> >

> >_________________________________________________________________

> >Un amor, una aventura, compañía para un viaje. Regístrate gratis

en MSN

> >Amor

> > & Amistad. http://match.msn.es/match/mt.cfm?pg=channel & tcid=162349

> >

>

> _________________________________________________________________

> Un amor, una aventura, compañía para un viaje. Regístrate gratis

en MSN Amor

> & Amistad. http://match.msn.es/match/mt.cfm?pg=channel & tcid=162349

>

To Pat and is on this subject and the worry of another sibling

I am cleerly not really one for advice on this suject as Amlie was

last in the house and the only one with a disability, but as far as

daring to have another surely the odds of another charge child are

slim I have only read of one other woman with two charge kids.

Its easy for me to say 'go for it' I am not in your shoes but surely

God could not be so cruel and I am a great believer 'its all in his

hands'

My advice would be the same as what i said to is your children

will thrive with other siblings in the house for company and play i

know not a lot about charge but I see Amelie with her sisters and

she wriggles and giggles with delight when there around her and for

someone who is supposedly very little vision / Profoundly Deaf both

ears I know what I see she cant get enough of her sisters and this

is definately a good thing, I also think you deserve to bond and

enjoy a healthy child as well to experience both aspects is eaqually

rewarding as I now worry everyday of my life over Amelie whereas

with our other three girls everything was adorable, relaxing and

enjoyable.

So You and is should not worry too long on the negatives and

tune into only positives although I appreciate this is easy for me

to say and if I were in your shoes etc etc!!!

Love anyway

Lesley

PS Ive got to get of this computer and get the school uniforms done

otherwise it will be mayhem in the morning!!

October 30, 2005

Thanks for starting this thread Pat...! I will watch with interest!

A topic which is obviously close to my heart too at the moment. We are going

to have to encourage each other to be brave and get on with having number

2....

Now I can think of one example where the oldest child has Charge- that's

Flo!

is

>

> (is, attention to this e-mail ..)

>

> I was wondering.... How many of you, or cases that you know, have *only*

> your OLDEST child with CHARGE and the rest healthy?

>

> Pat, mum to Aidan (CHARGE- 6 1/2 months old, 10 wk prem) - EIRE

>

> _________________________________________________________________

> Descubre la descarga digital con MSN Music. Más de medio millón de

> canciones. http://music.msn.es/

>

> Membership of this email support groups does not constitute membership in

> the CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter),

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org - for CHARGE Syndrome Canada

> information and membership, please visit http://www.chargesyndrome.ca or

> email info@... .

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

> www.chargesyndrome.org <http://www.chargesyndrome.org> or by calling

> 1-.

>

October 30, 2005

Pat

I've been meaning to remind is of all the families at our family day who

have the older/est child with CHARGE and all the younger children are

medically boring. Of the 13 families there I think that at least 2/3s were

this way round and I know of many others in the UK.

Simon

>

>Reply-To: CHARGE

>To: CHARGE

>Subject: CHARGE oldest children!

>Date: Sun, 30 Oct 2005 19:12:23 +0000

>

>(is, attention to this e-mail ..)

>

>I was wondering.... How many of you, or cases that you know, have *only*

>your OLDEST child with CHARGE and the rest healthy?

>

>Pat, mum to Aidan (CHARGE- 6 1/2 months old, 10 wk prem) - EIRE

>

>_________________________________________________________________

>Descubre la descarga digital con MSN Music. Más de medio millón de

>canciones. http://music.msn.es/

>

October 30, 2005

Great to know!!

See, is?? Got for it!! ('Cause I will follow!!)

-->If not before, Im definitely having another child in 2007..

Pat-

>

> Pat

>

> I've been meaning to remind is of all the families at our

family day who

> have the older/est child with CHARGE and all the younger children

are

> medically boring. Of the 13 families there I think that at least

2/3s were

> this way round and I know of many others in the UK.

>

> Simon

>

> >From: " " <diaz_pat@h...>

> >Reply-To: CHARGE

> >To: CHARGE

> >Subject: CHARGE oldest children!

> >Date: Sun, 30 Oct 2005 19:12:23 +0000

> >

> >(is, attention to this e-mail ..)

> >

> >I was wondering.... How many of you, or cases that you know, have

*only*

> >your OLDEST child with CHARGE and the rest healthy?

> >

> >Pat, mum to Aidan (CHARGE- 6 1/2 months old, 10 wk prem) - EIRE

> >

> >_________________________________________________________________

> >Descubre la descarga digital con MSN Music. Más de medio millón de

> >canciones. http://music.msn.es/

> >

>

October 30, 2005

Pat,

We are the reverse. Dylan is our youngest and only CHARGEr out of 4 full

term births.

Kim

> hup! hup! that would be us,

>

> - age 16 - CHARGEr, Elliot 13, Ethan 11,

>

> )

>

> smiles~!

>

> Yuka

> CHARGE oldest children!

>

>> (is, attention to this e-mail ..)

>>

>> I was wondering.... How many of you, or cases that you know, have *only*

>> your OLDEST child with CHARGE and the rest healthy?

>>

>> Pat, mum to Aidan (CHARGE- 6 1/2 months old, 10 wk prem) - EIRE

>>

>

> Membership of this email support groups does not constitute membership in the

> CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter),

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org - for CHARGE Syndrome Canada

> information and membership, please visit http://www.chargesyndrome.ca or email

> info@... .

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

> www.chargesyndrome.org or by calling 1-.

>

October 30, 2005

Pat,

I only know 2 families who have had their first and second child have

CHARGE. There are so many others that have had subsequent pregnancies with

no problems what so ever. I think it really does match the statistics of 1

-2 % chance of " lightning striking twice " , which is not much assurance when

you have already been hit once. I have had 5 pregnancies, my first baby

died right before birth from a fluke thing, but was healthy otherwise - no

sign of CHARGE. My second was born healthy. My third was born healthy. My

fourth I had a miscarriage at 11 weeks, and Dylan was born with CHARGE and

is an awesome gift to our family. My mother simply could not believe all

that, she had 6 pregnancies and 6 healthy children. It really does come

down to getting to a place of believing that you and your family will " be

okay " if the worst happens, and then letting it go and taking the chance.

Sometimes a guarantee would be so nice, but with life there is no such

thing. I do think though that YOU will know when YOU are ready to try again

or not!

Kim

> Yes, I've noticed that most of the times the CHARGE child is the YOUNGEST!

> with no further complications in previous pregnancies..

>

> But what about daring to have more children after having your FIRST child

> with CHARGE?? (my & is' fear..)

>

> I just want to know that I won't be the first one to dare... LOL

> .......... and that eventually turns out

> well, with a healthy child!!!

>

> Pat-

>

>>

>> Reply-To: CHARGE

>> To: CHARGE

>> Subject: Re: CHARGE oldest children!

>> Date: Sun, 30 Oct 2005 19:17:32 -0000

>>

>>>

>>> (is, attention to this e-mail ..)

>>>

>>> I was wondering.... How many of you, or cases that you know, have

>> *only*

>>> your OLDEST child with CHARGE and the rest healthy?

>>>

>>> Pat, mum to Aidan (CHARGE- 6 1/2 months old, 10 wk prem) - EIRE

>>>

>>> _________________________________________________________________

>>> Descubre la descarga digital con MSN Music. Más de medio millón de

>>> canciones. http://music.msn.es/

>>>

>> I had three healthy children before Amelie all pregnancies healthy

>> no problems at all but with amelie i had gestational diabetes on

>> insulin injections three times daily and polyhydramnious fliud which

>> Weir explained to me obviosly Amelie has swallowing

>> difficulties and this is why the fluid was excessive. I there a link

>> with first babies then or is it coincidence?

>>

>> Lesley x

>>

>

> _________________________________________________________________

> Un amor, una aventura, compañía para un viaje. Regístrate gratis en MSN Amor

> & Amistad. http://match.msn.es/match/mt.cfm?pg=channel & tcid=162349

>

> Membership of this email support groups does not constitute membership in the

> CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter),

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org - for CHARGE Syndrome Canada

> information and membership, please visit http://www.chargesyndrome.ca or email

> info@... .

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

> www.chargesyndrome.org or by calling 1-.

>

October 31, 2005

my son mathew was born with charge and we had no clue that anything was

wrong. he was the best and worst thing that was ever happened to me. all the

med.

problems were really bad. he has all six of the letters. but he was the best

child in the world. he was not really given a chance to live and he made it

threw eveything. he is five and going to kindergarden this year. oh we had a

little girl 21 months after and has added a little brother this year in feb.

both

of the sibblings bring so much for him i just can't write in words. it is ok to

be scrared. i was threw both of my next births. just find a doc that

understands, because my doc that i had with my son didn't. mayby that is why we

had no

idea that anything was wrong. if you do go ahead a have another one just

think can i handle another charger?

October 31, 2005

My oldest has CHARGE and my other is over all healthy.

a mom to 8yr CHARGE and Quintin 5yr

--- wrote:

> (is, attention to this e-mail ..)

>

> I was wondering.... How many of you, or cases that

> you know, have *only*

> your OLDEST child with CHARGE and the rest healthy?

>

> Pat, mum to Aidan (CHARGE- 6 1/2 months old, 10 wk

> prem) - EIRE

>

_________________________________________________________________

> Descubre la descarga digital con MSN Music. Más de

> medio millón de

> canciones. http://music.msn.es/

>

__________________________________

Yahoo! FareChase: Search multiple travel sites in one click.

http://farechase.yahoo.com

October 31, 2005

Pat,

Tyler was my first (he's my CHARGEr). Five and a half years later I got brave

enough for another. Two years after that my final one. I will tell you that

the siblings are very good for their socialization. Tyler doesn't have any

friends in public school. He tells me he has " a lot of helpers. " Two years ago

he had friends (the behaviors started and we transitioned to a different

building thinking a " fresh start " would be helpful--WRONG! Anyway, and

Alan are wonderful playmates, even if they are younger.

Kristy

Re: CHARGE oldest children!

>Date: Sun, 30 Oct 2005 19:17:32 -0000

>

> >

> > (is, attention to this e-mail ..)

> >

> > I was wondering.... How many of you, or cases that you know, have

>*only*

> > your OLDEST child with CHARGE and the rest healthy?

> >

> > Pat, mum to Aidan (CHARGE- 6 1/2 months old, 10 wk prem) - EIRE

> >

> > _________________________________________________________________

> > Descubre la descarga digital con MSN Music. Más de medio millón de

> > canciones. http://music.msn.es/<http://music.msn.es/>

> >

>I had three healthy children before Amelie all pregnancies healthy

>no problems at all but with amelie i had gestational diabetes on

>insulin injections three times daily and polyhydramnious fliud which

> Weir explained to me obviosly Amelie has swallowing

>difficulties and this is why the fluid was excessive. I there a link

>with first babies then or is it coincidence?

>

>Lesley x

>

_________________________________________________________________

Un amor, una aventura, compañía para un viaje. Regístrate gratis en MSN Amor

& Amistad.

http://match.msn.es/match/mt.cfm?pg=channel & tcid=162349<http://match.msn.es/matc\

h/mt.cfm?pg=channel & tcid=162349>

Membership of this email support groups does not constitute membership in the

CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

For information about the CHARGE Syndrome

Foundation or to become a member (and get the newsletter),

please contact marion@... or

visit

the web site at http://www.chargesyndrome.org<http://www.chargesyndrome.org/>

- for CHARGE Syndrome Canada information and membership, please visit

http://www.chargesyndrome.ca<http://www.chargesyndrome.ca/> or email

info@... .

8th International

CHARGE Syndrome Conference, July, 2007. Information will be available at

www.chargesyndrome.org<http://www.chargesyndrome.org/> or by calling

1-.

October 31, 2005

yep think that or face the worst hope for the best that what we do like with

my funding my teachers were like we hope you do thsi but you will posibly do

that and shes beginning to be right i think still havent got the stupid

fund9ing but thats a compleatly different story

>

> my son mathew was born with charge and we had no clue that anything was

> wrong. he was the best and worst thing that was ever happened to me. all

> the med.

> problems were really bad. he has all six of the letters. but he was the

> best

> child in the world. he was not really given a chance to live and he made

> it

> threw eveything. he is five and going to kindergarden this year. oh we had

> a

> little girl 21 months after and has added a little brother this year in

> feb. both

> of the sibblings bring so much for him i just can't write in words. it is

> ok to

> be scrared. i was threw both of my next births. just find a doc that

> understands, because my doc that i had with my son didn't. mayby that is

> why we had no

> idea that anything was wrong. if you do go ahead a have another one just

> think can i handle another charger?

>

October 31, 2005

tim is our oldest charge child 2 others healthy with the exception of liam

being born with a multicystic kidney removed at 5 mo.

maria

CHARGE oldest children!

> (is, attention to this e-mail ..)

>

> I was wondering.... How many of you, or cases that you know, have *only*

> your OLDEST child with CHARGE and the rest healthy?

>

> Pat, mum to Aidan (CHARGE- 6 1/2 months old, 10 wk prem) - EIRE

>

> _________________________________________________________________

> Descubre la descarga digital con MSN Music. Más de medio millón de

> canciones. http://music.msn.es/

>

> Membership of this email support groups does not constitute membership in

> the CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter),

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org - for CHARGE Syndrome Canada

> information and membership, please visit http://www.chargesyndrome.ca or

> email info@... .

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

> www.chargesyndrome.org or by calling 1-.

>

October 31, 2005

is,

Yep, totally right, and where would we all be without our " know it all "

Elly? Actually, she has been quite a good inspiration for . I am

sure I told you the story of starting to walk 2 weeks after Elly?

That was one hell of a challenge but we obviously survived. Don't know if

you remember the Leveys (Hannah, , , Joakim, ) from the

family day? (CHARGE) is the oldest and he learnt to walk shortly

after Joakim did. Seems number 2 may well pull number one up and number 2

learns a whole load thanks to number 1 (now I am confusing myself!).

It was quite hard to decide to go for number 2. We actaully thought about

adoption, then we saw a geneticist who was quite reassuring, then we thought

how it may seem to if we decided not to have more children on the

basis of her difficulties, then we decided that we had coped with an

unexpected set of complications so we would cope with anything that was

thrown at us, then we panicked about how we would manage if number

two ended up in hospital for the length of time she had, then we decided to

stop thinking about it and just go ahead as we woud never reach a stress

free conclusion. So you see, it was really quite an easy decision!!!! In

the very early days of pregnancy, I felt really stressed out with the " what

ifs " . I then decided that I had no control over what was to happen and to

just get on with life as stress free as was possible. Somehow, the

philosophical approach worked and saved my sanity.

Elly had a high resolution heart scan (I am sure it was a foetal echo) at 20

weeks gestation and then I was scanned to death fortnightly from around 28

weeks as it was thought that may have stopped growing round about

that time as she had a sunken stomach at birth and was nowhere near her

predicted birth weight. In retrospect, I wonder what they would have been

able to do if they found a reoccurrence anyway. I did feel more reassured

though and I had a really nice gentle gynae and I could skive off work to

attend my sessions so it all seemed quite worthwhile.

From time to time, the question of adoption pops up with us again, but this

has nothing to do with CHARGE. It has everything to do with the fact that

no way am I ever going through another pregnancy. They were never my

favourite times (to understate quite considerably).

All this notwithstanding, I still think that you and Neil (?) will know what

is right for you when the time comes. Keep searching, it will all fall into

place when you are ready.

Now ask a quick question, get a whole load of waffle!

FLo

>

" Now I can think of one example where the oldest child has Charge- that's

Flo! "

October 31, 2005

Thanks Flo...... All good waffle!

I think I've decided on my strategy. I'll get myself pregnant again when I'm

really busy with a big event at work next year and that way I won't have

time to worry about being pregnant and the outcome too much. My downfall is

always indulgent worrying!! I really put my hours in, it's almost on the

scale of a part time job...!

But if I schedule it right I can trick myself!

And the irony of it all is that my little man is sooooo cool, I would

be chuffed with another anyway....so what on earth do I worry about?!

is

Mum to !

>

> is,

> Yep, totally right, and where would we all be without our " know it all "

> Elly? Actually, she has been quite a good inspiration for . I am

> sure I told you the story of starting to walk 2 weeks after Elly?

> That was one hell of a challenge but we obviously survived. Don't know if

> you remember the Leveys (Hannah, , , Joakim, ) from the

> family day? (CHARGE) is the oldest and he learnt to walk shortly

> after Joakim did. Seems number 2 may well pull number one up and number 2

> learns a whole load thanks to number 1 (now I am confusing myself!).

>

> It was quite hard to decide to go for number 2. We actaully thought about

> adoption, then we saw a geneticist who was quite reassuring, then we

> thought

> how it may seem to if we decided not to have more children on the

> basis of her difficulties, then we decided that we had coped with an

> unexpected set of complications so we would cope with anything that was

> thrown at us, then we panicked about how we would manage if number

> two ended up in hospital for the length of time she had, then we decided

> to

> stop thinking about it and just go ahead as we woud never reach a stress

> free conclusion. So you see, it was really quite an easy decision!!!! In

> the very early days of pregnancy, I felt really stressed out with the

> " what

> ifs " . I then decided that I had no control over what was to happen and to

> just get on with life as stress free as was possible. Somehow, the

> philosophical approach worked and saved my sanity.

>

> Elly had a high resolution heart scan (I am sure it was a foetal echo) at

> 20

> weeks gestation and then I was scanned to death fortnightly from around 28

> weeks as it was thought that may have stopped growing round about

> that time as she had a sunken stomach at birth and was nowhere near her

> predicted birth weight. In retrospect, I wonder what they would have been

> able to do if they found a reoccurrence anyway. I did feel more reassured

> though and I had a really nice gentle gynae and I could skive off work to

> attend my sessions so it all seemed quite worthwhile.

>

> From time to time, the question of adoption pops up with us again, but

> this

> has nothing to do with CHARGE. It has everything to do with the fact that

> no way am I ever going through another pregnancy. They were never my

> favourite times (to understate quite considerably).

>

> All this notwithstanding, I still think that you and Neil (?) will know

> what

> is right for you when the time comes. Keep searching, it will all fall

> into

> place when you are ready.

>

> Now ask a quick question, get a whole load of waffle!

>

> FLo

>

> >

>

> " Now I can think of one example where the oldest child has Charge- that's

> Flo! "

>

> Membership of this email support groups does not constitute membership in

> the CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter),

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org - for CHARGE Syndrome Canada

> information and membership, please visit http://www.chargesyndrome.ca or

> email info@... .

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

> www.chargesyndrome.org <http://www.chargesyndrome.org> or by calling

> 1-.

>

October 31, 2005

is - I have been way too into analyzing my own emotions lately, so ditch

my philosophical BS if it is of no use to you.

I think we worry because we know we have no control of the outcome and that

is scary to all of us humans; especially mothers who are hard wired to

protect their babies from harm. It seems worry is the struggle to convince

our selves that we do have some bit of influence on the outcome. Once you

accept that, worry is really not so bad - it is figuring out what pieces can

I do something to protect my baby, and what things do I need to let go of.

For me thinking about it and talking about it helps me get to that place.

And contrary to what many might think, I think it is productive. Kim

> Thanks Flo...... All good waffle!

> I think I've decided on my strategy. I'll get myself pregnant again when I'm

> really busy with a big event at work next year and that way I won't have

> time to worry about being pregnant and the outcome too much. My downfall is

> always indulgent worrying!! I really put my hours in, it's almost on the

> scale of a part time job...!

>

> But if I schedule it right I can trick myself!

>

> And the irony of it all is that my little man is sooooo cool, I would

> be chuffed with another anyway....so what on earth do I worry about?!

>

> is

> Mum to !

>

>>

>> is,

>> Yep, totally right, and where would we all be without our " know it all "

>> Elly? Actually, she has been quite a good inspiration for . I am

>> sure I told you the story of starting to walk 2 weeks after Elly?

>> That was one hell of a challenge but we obviously survived. Don't know if

>> you remember the Leveys (Hannah, , , Joakim, ) from the

>> family day? (CHARGE) is the oldest and he learnt to walk shortly

>> after Joakim did. Seems number 2 may well pull number one up and number 2

>> learns a whole load thanks to number 1 (now I am confusing myself!).

>>

>> It was quite hard to decide to go for number 2. We actaully thought about

>> adoption, then we saw a geneticist who was quite reassuring, then we

>> thought

>> how it may seem to if we decided not to have more children on the

>> basis of her difficulties, then we decided that we had coped with an

>> unexpected set of complications so we would cope with anything that was

>> thrown at us, then we panicked about how we would manage if number

>> two ended up in hospital for the length of time she had, then we decided

>> to

>> stop thinking about it and just go ahead as we woud never reach a stress

>> free conclusion. So you see, it was really quite an easy decision!!!! In

>> the very early days of pregnancy, I felt really stressed out with the

>> " what

>> ifs " . I then decided that I had no control over what was to happen and to

>> just get on with life as stress free as was possible. Somehow, the

>> philosophical approach worked and saved my sanity.

>>

>> Elly had a high resolution heart scan (I am sure it was a foetal echo) at

>> 20

>> weeks gestation and then I was scanned to death fortnightly from around 28

>> weeks as it was thought that may have stopped growing round about

>> that time as she had a sunken stomach at birth and was nowhere near her

>> predicted birth weight. In retrospect, I wonder what they would have been

>> able to do if they found a reoccurrence anyway. I did feel more reassured

>> though and I had a really nice gentle gynae and I could skive off work to

>> attend my sessions so it all seemed quite worthwhile.

>>

>> From time to time, the question of adoption pops up with us again, but

>> this

>> has nothing to do with CHARGE. It has everything to do with the fact that

>> no way am I ever going through another pregnancy. They were never my

>> favourite times (to understate quite considerably).

>>

>> All this notwithstanding, I still think that you and Neil (?) will know

>> what

>> is right for you when the time comes. Keep searching, it will all fall

>> into

>> place when you are ready.

>>

>> Now ask a quick question, get a whole load of waffle!

>>

>> FLo

>>

>>>

>>

>> " Now I can think of one example where the oldest child has Charge- that's

>> Flo! "

>>

>> Membership of this email support groups does not constitute membership in

>> the CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

>> For information about the CHARGE Syndrome

>> Foundation or to become a member (and get the newsletter),

>> please contact marion@... or visit

>> the web site at http://www.chargesyndrome.org - for CHARGE Syndrome Canada

>> information and membership, please visit http://www.chargesyndrome.ca or

>> email info@... .

>> 8th International

>> CHARGE Syndrome Conference, July, 2007. Information will be available at

>> www.chargesyndrome.org <http://www.chargesyndrome.org> or by calling

>> 1-.

>>

October 31, 2005

THANK YOU ALL SOOOO MUCH FOR ALL YOUR FEEDBACK!!

It's good enough for me (and I guess for broody is too!) that we

won't be the first ones to give a second child a try.. after all,

having such WONDERFUL children the first go, why prevent us, and the

world! to enjoy another of our bundle of happiness???

To be honest, as I said in previous e-mails, I am going for a

sibling come Hell or high water.. but obviously it's very reassuring

knowing that someone tried already before you.. and turned out SO

well!

In any case, *hats off* to ye all!!

Pat, mum to Aidan (CHARGE- 6 3/4months old, 10 wks prem) - EIRE

PS> Whereabouts are you, a?

>

> > (is, attention to this e-mail ..)

> >

> > I was wondering.... How many of you, or cases that

> > you know, have *only*

> > your OLDEST child with CHARGE and the rest healthy?

> >

> > Pat, mum to Aidan (CHARGE- 6 1/2 months old, 10 wk

> > prem) - EIRE

> >

> _________________________________________________________________

> > Descubre la descarga digital con MSN Music. Más de

> > medio millón de

> > canciones. http://music.msn.es/

> >

>

> __________________________________

> Yahoo! FareChase: Search multiple travel sites in one click.

> http://farechase.yahoo.com

>

October 31, 2005

Our youngest has CHARGE, but our oldest has Asperger's Syndrome

(high-functioning Autism) just recently diagnosed. (He's a sophomore in

high school, for cryin' out loud!) Ken also had larygiomalacia for year.

Friends in CHARGE,

Marilyn Ogan

Mom of (13 yrs, CHARGE+ JRA)

Mom of Ken (16 yrs, Asperger's Syndrome)

Wife of Rick

oganm@...

November 4, 2005

ive heard of alot of families with the middle one having charge

CHARGE oldest children!

>>Date: Sun, 30 Oct 2005 19:12:23 +0000

>>

>>(is, attention to this e-mail ..)

>>

>>I was wondering.... How many of you, or cases that you know, have *only*

>>your OLDEST child with CHARGE and the rest healthy?

>>

>>Pat, mum to Aidan (CHARGE- 6 1/2 months old, 10 wk prem) - EIRE

>>

>>_________________________________________________________________

>>Descubre la descarga digital con MSN Music. Más de medio millón de

>>canciones. http://music.msn.es/

>>

>

> Membership of this email support groups does not constitute membership in

> the CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter),

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org - for CHARGE Syndrome Canada

> information and membership, please visit http://www.chargesyndrome.ca or

> email info@... .

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

> www.chargesyndrome.org or by calling 1-.

>

November 4, 2005

My younger sister doenst have CHARGE, but she has a tinsy vision problem and

she is very short (whlie im not THAT short) and she has couple of charge

face features (big forred) hehehe

CHARGE oldest children!

> >Date: Sun, 30 Oct 2005 19:12:23 +0000

> >

> >(is, attention to this e-mail ..)

> >

> >I was wondering.... How many of you, or cases that you know, have

*only*

> >your OLDEST child with CHARGE and the rest healthy?

> >

> >Pat, mum to Aidan (CHARGE- 6 1/2 months old, 10 wk prem) - EIRE

> >

> >_________________________________________________________________

> >Descubre la descarga digital con MSN Music. Más de medio millón de

> >canciones. http://music.msn.es/

> >

>

Membership of this email support groups does not constitute membership in

the CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

For information about the CHARGE Syndrome

Foundation or to become a member (and get the newsletter),

please contact marion@... or visit

the web site at http://www.chargesyndrome.org - for CHARGE Syndrome Canada

information and membership, please visit http://www.chargesyndrome.ca or

email info@... .

8th International

CHARGE Syndrome Conference, July, 2007. Information will be available at

www.chargesyndrome.org or by calling 1-.

November 4, 2005

Pat,

Im the oldest. Non of my sibs have CHARGE and they are all younger.

Chantelle

November 4, 2005

Chantelle, how many brothers and sisters do you have, if I may ask?

I also saw you in the pictures and you don't seem to have the

typical CHARGE features, isn't that right?

I might have caught you a bit too late here in the list.. you seem a

quite mild case?

Pat-

>

> Pat,

>

> Im the oldest. Non of my sibs have CHARGE and they are all younger.

>

> Chantelle

>

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