Re: Amelies home...yippeeeee....for how long??

[Guest guest]

Michele,

I am glad - because we all are awed by with all that is " wrong " with our

kids, how they learn, achieve, and do anyhow! That is the beauty of it.

Kim

>

> Kim said: " It is because in the other kids she saw those neuro signs

> were indicators of brain damage. In CHARGE - most times - the brain itself

> is not damaged, it is the wiring that is faulty and the body figures out a

> new way. "

>

> Kim-

> This was perfectly worded for me right now. I need to share this with

> Aubrie's team. Now I can think more clearly about what is going on with her

> and how it can be possible to make positive changes. Thanks!! You have a

> way of saying just what I need when I need it!

>

> Michele W

> mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

>

>

>

> CHARGE SYNDROME LISTSERV PHOTO PAGE:

> http://www.imagestation.com/album/?id=2117043995

>

> 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

> (CHARGE Syndrome Canada - http://www.chargesyndrome.ca)

>

> 8th International

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

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

>

[Guest guest]

Michele,

I am glad - because we all are awed by with all that is " wrong " with our

kids, how they learn, achieve, and do anyhow! That is the beauty of it.

Kim

>

> Kim said: " It is because in the other kids she saw those neuro signs

> were indicators of brain damage. In CHARGE - most times - the brain itself

> is not damaged, it is the wiring that is faulty and the body figures out a

> new way. "

>

> Kim-

> This was perfectly worded for me right now. I need to share this with

> Aubrie's team. Now I can think more clearly about what is going on with her

> and how it can be possible to make positive changes. Thanks!! You have a

> way of saying just what I need when I need it!

>

> Michele W

> mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

>

>

>

> CHARGE SYNDROME LISTSERV PHOTO PAGE:

> http://www.imagestation.com/album/?id=2117043995

>

> 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

> (CHARGE Syndrome Canada - http://www.chargesyndrome.ca)

>

> 8th International

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

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

>

[Guest guest]

Michele,

I am glad - because we all are awed by with all that is " wrong " with our

kids, how they learn, achieve, and do anyhow! That is the beauty of it.

Kim

>

> Kim said: " It is because in the other kids she saw those neuro signs

> were indicators of brain damage. In CHARGE - most times - the brain itself

> is not damaged, it is the wiring that is faulty and the body figures out a

> new way. "

>

> Kim-

> This was perfectly worded for me right now. I need to share this with

> Aubrie's team. Now I can think more clearly about what is going on with her

> and how it can be possible to make positive changes. Thanks!! You have a

> way of saying just what I need when I need it!

>

> Michele W

> mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

>

>

>

> CHARGE SYNDROME LISTSERV PHOTO PAGE:

> http://www.imagestation.com/album/?id=2117043995

>

> 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

> (CHARGE Syndrome Canada - http://www.chargesyndrome.ca)

>

> 8th International

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

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

>

[Guest guest]

Hi Michele and Kim

I too feel thankful for this summary....if only my team here in the

U.K. got to know some charge children it would make life easier. I

sometimes get the impression they too think Amelie has no or little

prognosis.... i felt the same a long 13 months ago but being here

and reading up on all the older children i know she has a chance and

a good one, I just wish they could see this too, but sadly they cant

or dont want to...

I remeber being on the neonate unit and i met a friend on there with

a premmie baby, she happened to cock up one day when telling me she

was talking to some of the nurses about Amelie, and she said how

they had said 'its such a shame for Amelie, little hope, not good

news' as if they knew she wasnt going to make it. at the time I

cried and cried and thought oh no shes not going to live....but now

it angers me, what do they know at the end of the day, they all had

her down as severe brain damage and they did not have a diagnosis at

that time.

Its like kim has said they see the early problems as neuro brain

damage and then thats it everyone gets a copy of the letter and the

community have already made their minds up before they arrive and

even meet her.

It infuriates me...and amelie has more than succeeded in our eyes to

date given the fact she has been hospitalised 10 out of 13 months,

thanks for that Kim, it sums it all up perfectly.

lol Lesx

>

>

> Kim said: " It is because in the other kids she saw those neuro

signs

> were indicators of brain damage. In CHARGE - most times - the

brain itself

> is not damaged, it is the wiring that is faulty and the body

figures out a

> new way. "

>

> Kim-

> This was perfectly worded for me right now. I need to share this

with

> Aubrie's team. Now I can think more clearly about what is going

on with her

> and how it can be possible to make positive changes. Thanks!!

You have a

> way of saying just what I need when I need it!

>

> Michele W

> mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

>

[Guest guest]

Lesley, You are welcome. Kim

> Hi Michele and Kim

>

> I too feel thankful for this summary....if only my team here in the

> U.K. got to know some charge children it would make life easier. I

> sometimes get the impression they too think Amelie has no or little

> prognosis.... i felt the same a long 13 months ago but being here

> and reading up on all the older children i know she has a chance and

> a good one, I just wish they could see this too, but sadly they cant

> or dont want to...

>

> I remeber being on the neonate unit and i met a friend on there with

> a premmie baby, she happened to cock up one day when telling me she

> was talking to some of the nurses about Amelie, and she said how

> they had said 'its such a shame for Amelie, little hope, not good

> news' as if they knew she wasnt going to make it. at the time I

> cried and cried and thought oh no shes not going to live....but now

> it angers me, what do they know at the end of the day, they all had

> her down as severe brain damage and they did not have a diagnosis at

> that time.

>

> Its like kim has said they see the early problems as neuro brain

> damage and then thats it everyone gets a copy of the letter and the

> community have already made their minds up before they arrive and

> even meet her.

>

> It infuriates me...and amelie has more than succeeded in our eyes to

> date given the fact she has been hospitalised 10 out of 13 months,

>

> thanks for that Kim, it sums it all up perfectly.

>

> lol Lesx

>

>

>

>

>

>

>

>

>>

>>

>> Kim said: " It is because in the other kids she saw those neuro

> signs

>> were indicators of brain damage. In CHARGE - most times - the

> brain itself

>> is not damaged, it is the wiring that is faulty and the body

> figures out a

>> new way. "

>>

>> Kim-

>> This was perfectly worded for me right now. I need to share this

> with

>> Aubrie's team. Now I can think more clearly about what is going

> on with her

>> and how it can be possible to make positive changes. Thanks!!

> You have a

>> way of saying just what I need when I need it!

>>

>> Michele W

>> mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

>>

>

>

>

>

>

>

> CHARGE SYNDROME LISTSERV PHOTO PAGE:

> http://www.imagestation.com/album/?id=2117043995

>

> 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

> (CHARGE Syndrome Canada - http://www.chargesyndrome.ca)

>

> 8th International

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

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

>

[Guest guest]

as allwasy kims ur wrods are percfect xxxxxxxxxx love u

>

> Lesley, You are welcome. Kim

>

>

>

>

> > Hi Michele and Kim

> >

> > I too feel thankful for this summary....if only my team here in the

> > U.K. got to know some charge children it would make life easier. I

> > sometimes get the impression they too think Amelie has no or little

> > prognosis.... i felt the same a long 13 months ago but being here

> > and reading up on all the older children i know she has a chance and

> > a good one, I just wish they could see this too, but sadly they cant

> > or dont want to...

> >

> > I remeber being on the neonate unit and i met a friend on there with

> > a premmie baby, she happened to cock up one day when telling me she

> > was talking to some of the nurses about Amelie, and she said how

> > they had said 'its such a shame for Amelie, little hope, not good

> > news' as if they knew she wasnt going to make it. at the time I

> > cried and cried and thought oh no shes not going to live....but now

> > it angers me, what do they know at the end of the day, they all had

> > her down as severe brain damage and they did not have a diagnosis at

> > that time.

> >

> > Its like kim has said they see the early problems as neuro brain

> > damage and then thats it everyone gets a copy of the letter and the

> > community have already made their minds up before they arrive and

> > even meet her.

> >

> > It infuriates me...and amelie has more than succeeded in our eyes to

> > date given the fact she has been hospitalised 10 out of 13 months,

> >

> > thanks for that Kim, it sums it all up perfectly.

> >

> > lol Lesx

> >

> >

> >

> >

> >

> >

> >

> >

> >>

> >>

> >> Kim said: " It is because in the other kids she saw those neuro

> > signs

> >> were indicators of brain damage. In CHARGE - most times - the

> > brain itself

> >> is not damaged, it is the wiring that is faulty and the body

> > figures out a

> >> new way. "

> >>

> >> Kim-

> >> This was perfectly worded for me right now. I need to share this

> > with

> >> Aubrie's team. Now I can think more clearly about what is going

> > on with her

> >> and how it can be possible to make positive changes. Thanks!!

> > You have a

> >> way of saying just what I need when I need it!

> >>

> >> Michele W

> >> mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

> >>

> >

> >

> >

> >

> >

> >

> > CHARGE SYNDROME LISTSERV PHOTO PAGE:

> > http://www.imagestation.com/album/?id=2117043995

> >

> > 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

> > (CHARGE Syndrome Canada - http://www.chargesyndrome.ca)

> >

> > 8th International

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

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

> >