Re: 's & Kennedy's heart surgery coming up

[Guest guest]

,

I will be thinking about you on Jan. 6th. Almost the IDENTICAL thing

happening with Kennedy - coarctation repair didn't grow with her (gortex

patch) and where the blood comes from the left ventricle up to the aorta, a

" subaortic shelf " has developed and must be removed and the area stretched.

We just found out before Christmas they will skip the planned cardiac Cath

and go straight to surgery as things have progressed for the worse a lot

quicker than they'd anticipated. It's ironic about 's height and

weight, very similar to Kennedy's she will be 6 on January 27th and she is

45 lbs and 45 inches tall.

Weir

Mom to Kennedy 5 1/2 yr old with CHARGE, 14, 12 and wife to

Graeme.

New Brunswick, Canada

Weir homepage: http://personal.nbnet.nb.ca/gweir

CHARGE SYNDROME CANADA: http://www.chargesyndrome.ca

's heart surgery coming up

Hi to all,

I have been reading of Lucas and his upcoming heart surgery...

was scheduled for December 15th, but developed an ear infection, so we

are now scheduled for January 6th. When she was 12 days old they had

to repair a coarctation and ended up using a Gore Tex patch on her

aorta. Now, since she has grown, and the patch didn't, her aorta is

narrowed too much again. She has actually grown collateral vessels to

help herself. They originally thought they could use a stent, but have

decided to open her chest and replace the patch. The coarctation is in

a place where a stent may cause other problems with plaque and

blockages, especially with her small size. (she will be 8 at the end

of January, but is only 44 pounds and about 44 inches tall.) Maybe not

too small for a CHARGEr, but my just -turned- 4 -year old is bigger

than ! And my 11 year old is already 5'6!

I am scared for her, but I also know that it is necessary...The waiting

is so difficult...and I can't help thinking about some of the worst

outcomes...she is such a special little girl...

Put her in your prayers again, if you please...

G

Membership of this email support groups does not constitute membership in

the CHARGE Syndrome Foundation.

For information about the CHARGE Syndrome

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

please contact marion@... or visit

the CHARGE Syndrome Foundation web page

at http://www.chargesyndrome.org

7th International

CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

Information will be available at our website

www.chargesyndrome.org or by calling 1-. In Canada, you may

contact CHARGE Syndrome Canada at 1- (families), visit

www.chargesyndrome.ca, or email info@.... Thank you!

[Guest guest]

,

I think the earliest they can get her in at the hospital I want her to have

it done at in Toronto is April.

Weir

Mom to Kennedy 5 1/2 yr old with CHARGE, 14, 12 and wife to

Graeme.

New Brunswick, Canada

Weir homepage: http://personal.nbnet.nb.ca/gweir

CHARGE SYNDROME CANADA: http://www.chargesyndrome.ca

Re: 's & Kennedy's heart surgery coming up

, when is Kennedy having her surgery? Sorry to hear it's going to be

that involved for everyone.

And I'm sweating the ear tubes again--and that's only a possibility. you

are all in our thoughts.

's heart surgery coming up

>

>

>

> Hi to all,

> I have been reading of Lucas and his upcoming heart surgery...

> was scheduled for December 15th, but developed an ear infection, so we

> are now scheduled for January 6th. When she was 12 days old they

had

> to repair a coarctation and ended up using a Gore Tex patch on her

> aorta. Now, since she has grown, and the patch didn't, her aorta is

> narrowed too much again. She has actually grown collateral vessels to

> help herself. They originally thought they could use a stent, but

have

> decided to open her chest and replace the patch. The coarctation is

in

> a place where a stent may cause other problems with plaque and

> blockages, especially with her small size. (she will be 8 at the end

> of January, but is only 44 pounds and about 44 inches tall.) Maybe

not

> too small for a CHARGEr, but my just -turned- 4 -year old is bigger

> than ! And my 11 year old is already 5'6!

>

> I am scared for her, but I also know that it is necessary...The

waiting

> is so difficult...and I can't help thinking about some of the worst

> outcomes...she is such a special little girl...

>

> Put her in your prayers again, if you please...

>

> G

>

>

>

> Membership of this email support groups does not constitute membership

in

> the CHARGE Syndrome Foundation.

> For information about the CHARGE Syndrome

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

> please contact marion@... or visit

> the CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

> 7th International

> CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

> Information will be available at our website

> www.chargesyndrome.org or by calling 1-. In Canada, you

may

> contact CHARGE Syndrome Canada at 1- (families), visit

> www.chargesyndrome.ca, or email info@.... Thank you!

>

>

>

>

[Guest guest]

, when is Kennedy having her surgery? Sorry to hear it's going to be

that involved for everyone.

And I'm sweating the ear tubes again--and that's only a possibility. you

are all in our thoughts.

's heart surgery coming up

>

>

>

> Hi to all,

> I have been reading of Lucas and his upcoming heart surgery...

> was scheduled for December 15th, but developed an ear infection, so we

> are now scheduled for January 6th. When she was 12 days old they had

> to repair a coarctation and ended up using a Gore Tex patch on her

> aorta. Now, since she has grown, and the patch didn't, her aorta is

> narrowed too much again. She has actually grown collateral vessels to

> help herself. They originally thought they could use a stent, but have

> decided to open her chest and replace the patch. The coarctation is in

> a place where a stent may cause other problems with plaque and

> blockages, especially with her small size. (she will be 8 at the end

> of January, but is only 44 pounds and about 44 inches tall.) Maybe not

> too small for a CHARGEr, but my just -turned- 4 -year old is bigger

> than ! And my 11 year old is already 5'6!

>

> I am scared for her, but I also know that it is necessary...The waiting

> is so difficult...and I can't help thinking about some of the worst

> outcomes...she is such a special little girl...

>

> Put her in your prayers again, if you please...

>

> G

>

>

>

> Membership of this email support groups does not constitute membership

in

> the CHARGE Syndrome Foundation.

> For information about the CHARGE Syndrome

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

> please contact marion@... or visit

> the CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

> 7th International

> CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

> Information will be available at our website

> www.chargesyndrome.org or by calling 1-. In Canada, you may

> contact CHARGE Syndrome Canada at 1- (families), visit

> www.chargesyndrome.ca, or email info@.... Thank you!

>

>

>

>

[Guest guest]

is that a good thing or bad thing to wait until April? I can understand the

medical necessity, but, maybe waiting until April will give you time to

prepare--it there is such a thing.

maria

's heart surgery coming up

> >

> >

> >

> > Hi to all,

> > I have been reading of Lucas and his upcoming heart surgery...

> > was scheduled for December 15th, but developed an ear infection, so

we

> > are now scheduled for January 6th. When she was 12 days old they

> had

> > to repair a coarctation and ended up using a Gore Tex patch on her

> > aorta. Now, since she has grown, and the patch didn't, her aorta is

> > narrowed too much again. She has actually grown collateral vessels

to

> > help herself. They originally thought they could use a stent, but

> have

> > decided to open her chest and replace the patch. The coarctation is

> in

> > a place where a stent may cause other problems with plaque and

> > blockages, especially with her small size. (she will be 8 at the

end

> > of January, but is only 44 pounds and about 44 inches tall.) Maybe

> not

> > too small for a CHARGEr, but my just -turned- 4 -year old is bigger

> > than ! And my 11 year old is already 5'6!

> >

> > I am scared for her, but I also know that it is necessary...The

> waiting

> > is so difficult...and I can't help thinking about some of the worst

> > outcomes...she is such a special little girl...

> >

> > Put her in your prayers again, if you please...

> >

> > G

> >

> >

> >

> > Membership of this email support groups does not constitute

membership

> in

> > the CHARGE Syndrome Foundation.

> > For information about the CHARGE Syndrome

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

> > please contact marion@... or visit

> > the CHARGE Syndrome Foundation web page

> > at http://www.chargesyndrome.org

> > 7th International

> > CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

> > Information will be available at our website

> > www.chargesyndrome.org or by calling 1-. In Canada, you

> may

> > contact CHARGE Syndrome Canada at 1- (families), visit

> > www.chargesyndrome.ca, or email info@.... Thank you!

> >

> >

> >

> >

[Guest guest]

Well hopefully , either that, or I've got a few months to stress about

it. I think all of this would be much harder if she looked or acted sickly

but she is just a little bubble full of life and energy.

Hopefully, that will get us all through!

Weir

Mom to Kennedy 5 1/2 yr old with CHARGE, 14, 12 and wife to

Graeme.

New Brunswick, Canada

Weir homepage: http://personal.nbnet.nb.ca/gweir

CHARGE SYNDROME CANADA: http://www.chargesyndrome.ca

Re: 's & Kennedy's heart surgery coming up

is that a good thing or bad thing to wait until April? I can understand

the

medical necessity, but, maybe waiting until April will give you time to

prepare--it there is such a thing.

maria

's heart surgery coming up

> >

> >

> >

> > Hi to all,

> > I have been reading of Lucas and his upcoming heart

surgery...

> > was scheduled for December 15th, but developed an ear infection,

so

we

> > are now scheduled for January 6th. When she was 12 days old

they

> had

> > to repair a coarctation and ended up using a Gore Tex patch on her

> > aorta. Now, since she has grown, and the patch didn't, her aorta

is

> > narrowed too much again. She has actually grown collateral

vessels

to

> > help herself. They originally thought they could use a stent, but

> have

> > decided to open her chest and replace the patch. The coarctation

is

> in

> > a place where a stent may cause other problems with plaque and

> > blockages, especially with her small size. (she will be 8 at the

end

> > of January, but is only 44 pounds and about 44 inches tall.)

Maybe

> not

> > too small for a CHARGEr, but my just -turned- 4 -year old is

bigger

> > than ! And my 11 year old is already 5'6!

> >

> > I am scared for her, but I also know that it is necessary...The

> waiting

> > is so difficult...and I can't help thinking about some of the

worst

> > outcomes...she is such a special little girl...

> >

> > Put her in your prayers again, if you please...

> >

> > G

> >

> >

> >

> > Membership of this email support groups does not constitute

membership

> in

> > the CHARGE Syndrome Foundation.

> > For information about the CHARGE Syndrome

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

> > please contact marion@... or visit

> > the CHARGE Syndrome Foundation web page

> > at http://www.chargesyndrome.org

> > 7th International

> > CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24,

2005.

> > Information will be available at our website

> > www.chargesyndrome.org or by calling 1-. In Canada,

you

> may

> > contact CHARGE Syndrome Canada at 1- (families), visit

> > www.chargesyndrome.ca, or email info@.... Thank you!

> >

> >

> >

> >

[Guest guest]

Ok-- my little peanut turned 6 on Nov 20 and is barely 36 lbs and probably about

36-37 " tall! And to top it off -- she is outgrowing clothes -- unless I'm just

shrinking them with my notoriously bad laundry skills!!! :-) I was thrilled

while shopping today to find some little jeans that fit her tiny butt and are

long enough for her legs. Most have to be way too short to fit in the waist. I

know she's tiny compared to her " typical " peers, but I didn't realize how tiny

she was compared to her CHARGE peers also.

Michele W

Aubrie's mom

very similar to Kennedy's she will be 6 on January 27th and she is

45 lbs and 45 inches tall.

[Guest guest]

& ,

I will keep both & Kennedy in my thoughts and hope for a positive

outcome.

,

Jack has also developed subaortic stenosis following his repair for

DORV,VSD,PS.We are due another echo next month to check the progress.

Take care

Elaine mum to Elise(11yrs) & Jack (6yrs) CHaRGE

Scotland

[Guest guest]

Hi Michele,

Jack is also tiny. He is about 39ins and around 34lbs (15.5kg). Shoe size 8.

He is tube fed and is in proportion. Most of his class mates at school are

head and shoulders above him. There is one wee boy who is 6mths younger than

Jack and is the same size. This other boy has no disabilities,he is just small

Take care.

Elaine mum to Elise(11yrs) & Jack (6yrs) CHaRGE

Scotland

[Guest guest]

timmy is outgrowing clothes too--same problem--need the length, but not the

waist size or tiny little butt. it would be easier if all clothes were the

same size, regardless of maker. so we try to find 7 slims--and not an easy

task. same issue with shirts--long arms , but skinny--I would gratefully

give him some of my bulk!!!

Re: 's & Kennedy's heart surgery coming up

> Ok-- my little peanut turned 6 on Nov 20 and is barely 36 lbs and probably

about 36-37 " tall! And to top it off -- she is outgrowing clothes -- unless

I'm just shrinking them with my notoriously bad laundry skills!!! :-) I

was thrilled while shopping today to find some little jeans that fit her

tiny butt and are long enough for her legs. Most have to be way too short

to fit in the waist. I know she's tiny compared to her " typical " peers, but

I didn't realize how tiny she was compared to her CHARGE peers also.

>

> Michele W

> Aubrie's mom

> very similar to Kennedy's she will be 6 on January 27th and she is

> 45 lbs and 45 inches tall.

>

>

>

[Guest guest]

well, good!! give that little bubble of energy a hug from us--and don't

stress-just enjoy her.

maria

's heart surgery coming up

> > >

> > >

> > >

> > > Hi to all,

> > > I have been reading of Lucas and his upcoming heart

> surgery...

> > > was scheduled for December 15th, but developed an ear infection,

> so

> we

> > > are now scheduled for January 6th. When she was 12 days old

> they

> > had

> > > to repair a coarctation and ended up using a Gore Tex patch on

her

> > > aorta. Now, since she has grown, and the patch didn't, her

aorta

> is

> > > narrowed too much again. She has actually grown collateral

> vessels

> to

> > > help herself. They originally thought they could use a stent,

but

> > have

> > > decided to open her chest and replace the patch. The

coarctation

> is

> > in

> > > a place where a stent may cause other problems with plaque and

> > > blockages, especially with her small size. (she will be 8 at

the

> end

> > > of January, but is only 44 pounds and about 44 inches tall.)

> Maybe

> > not

> > > too small for a CHARGEr, but my just -turned- 4 -year old is

> bigger

> > > than ! And my 11 year old is already 5'6!

> > >

> > > I am scared for her, but I also know that it is necessary...The

> > waiting

> > > is so difficult...and I can't help thinking about some of the

> worst

> > > outcomes...she is such a special little girl...

> > >

> > > Put her in your prayers again, if you please...

> > >

> > > G

> > >

> > >

> > >

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

> membership

> > in

> > > the CHARGE Syndrome Foundation.

> > > For information about the CHARGE Syndrome

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

> > > please contact marion@... or visit

> > > the CHARGE Syndrome Foundation web page

> > > at http://www.chargesyndrome.org

> > > 7th International

> > > CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24,

> 2005.

> > > Information will be available at our website

> > > www.chargesyndrome.org or by calling 1-. In Canada,

> you

> > may

> > > contact CHARGE Syndrome Canada at 1- (families), visit

> > > www.chargesyndrome.ca, or email info@.... Thank

you!

> > >

> > >

> > >

> > >

[Guest guest]

- I always do, even at 4:15am this morning when I heard the yell up

the stairs " MOM, can I watch sign language video???? "

Gotta love her...

Weir

Mom to Kennedy 5 1/2 yr old with CHARGE, 14, 12 and wife to

Graeme.

New Brunswick, Canada

Weir homepage: http://personal.nbnet.nb.ca/gweir

CHARGE SYNDROME CANADA: http://www.chargesyndrome.ca

Re: 's & Kennedy's heart surgery coming up

well, good!! give that little bubble of energy a hug from us--and don't

stress-just enjoy her.

maria

's heart surgery coming up

> > >

> > >

> > >

> > > Hi to all,

> > > I have been reading of Lucas and his upcoming heart

> surgery...

> > > was scheduled for December 15th, but developed an ear

infection,

> so

> we

> > > are now scheduled for January 6th. When she was 12 days old

> they

> > had

> > > to repair a coarctation and ended up using a Gore Tex patch on

her

> > > aorta. Now, since she has grown, and the patch didn't, her

aorta

> is

> > > narrowed too much again. She has actually grown collateral

> vessels

> to

> > > help herself. They originally thought they could use a stent,

but

> > have

> > > decided to open her chest and replace the patch. The

coarctation

> is

> > in

> > > a place where a stent may cause other problems with plaque and

> > > blockages, especially with her small size. (she will be 8 at

the

> end

> > > of January, but is only 44 pounds and about 44 inches tall.)

> Maybe

> > not

> > > too small for a CHARGEr, but my just -turned- 4 -year old is

> bigger

> > > than ! And my 11 year old is already 5'6!

> > >

> > > I am scared for her, but I also know that it is

necessary...The

> > waiting

> > > is so difficult...and I can't help thinking about some of the

> worst

> > > outcomes...she is such a special little girl...

> > >

> > > Put her in your prayers again, if you please...

> > >

> > > G

> > >

> > >

> > >

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

> membership

> > in

> > > the CHARGE Syndrome Foundation.

> > > For information about the CHARGE Syndrome

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

> > > please contact marion@... or visit

> > > the CHARGE Syndrome Foundation web page

> > > at http://www.chargesyndrome.org

> > > 7th International

> > > CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24,

> 2005.

> > > Information will be available at our website

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

Canada,

> you

> > may

> > > contact CHARGE Syndrome Canada at 1- (families),

visit

> > > www.chargesyndrome.ca, or email info@.... Thank

you!

> > >

> > >

> > >

> > >

[Guest guest]

Michele,

Remember now, that Kennedy is tube fed and tube fed a LOT of food. I think

that makes a difference. I don't think she'd be as big if she was oral.

Weir

Mom to Kennedy 5 1/2 yr old with CHARGE, 14, 12 and wife to

Graeme.

New Brunswick, Canada

Weir homepage: http://personal.nbnet.nb.ca/gweir

CHARGE SYNDROME CANADA: http://www.chargesyndrome.ca

Re: 's & Kennedy's heart surgery coming up

Ok-- my little peanut turned 6 on Nov 20 and is barely 36 lbs and probably

about 36-37 " tall! And to top it off -- she is outgrowing clothes -- unless

I'm just shrinking them with my notoriously bad laundry skills!!! :-) I

was thrilled while shopping today to find some little jeans that fit her

tiny butt and are long enough for her legs. Most have to be way too short

to fit in the waist. I know she's tiny compared to her " typical " peers, but

I didn't realize how tiny she was compared to her CHARGE peers also.

Michele W

Aubrie's mom

very similar to Kennedy's she will be 6 on January 27th and she is

45 lbs and 45 inches tall.

[Guest guest]

yea, aren't they great?!? On Monday I took timmy to visit Pat's parents for

the night and tuesday. so, at 5 am I hear " DAD!!!! " and then the two of

them talking--next thing I know it's 5:15 am and there is massive pounding

on the very old GLASS front door. I think it's pat---we don't have a door

bell (maybe if I was married to an electrician I could get one), anyway, I

come running down stairs at worp speed so the entire house isn't up at 5 am,

to find Timmy banging on the door and yelling to pat. (who can't hear him

with the truck running--he was changing the car seats back to my truck) so

I whip open the door to yell to pat and Timmy yells, " be careful Dad " .

which is oh so cute, and thoughtful, but not at 5 am --especially when I

thought he was going to put a fist through the door. they keep us on our

toes, that is for sure. have a good one.

's heart surgery coming up

> > > >

> > > >

> > > >

> > > > Hi to all,

> > > > I have been reading of Lucas and his upcoming heart

> > surgery...

> > > > was scheduled for December 15th, but developed an ear

> infection,

> > so

> > we

> > > > are now scheduled for January 6th. When she was 12 days

old

> > they

> > > had

> > > > to repair a coarctation and ended up using a Gore Tex patch

on

> her

> > > > aorta. Now, since she has grown, and the patch didn't, her

> aorta

> > is

> > > > narrowed too much again. She has actually grown collateral

> > vessels

> > to

> > > > help herself. They originally thought they could use a

stent,

> but

> > > have

> > > > decided to open her chest and replace the patch. The

> coarctation

> > is

> > > in

> > > > a place where a stent may cause other problems with plaque

and

> > > > blockages, especially with her small size. (she will be 8

at

> the

> > end

> > > > of January, but is only 44 pounds and about 44 inches tall.)

> > Maybe

> > > not

> > > > too small for a CHARGEr, but my just -turned- 4 -year old is

> > bigger

> > > > than ! And my 11 year old is already 5'6!

> > > >

> > > > I am scared for her, but I also know that it is

> necessary...The

> > > waiting

> > > > is so difficult...and I can't help thinking about some of

the

> > worst

> > > > outcomes...she is such a special little girl...

> > > >

> > > > Put her in your prayers again, if you please...

> > > >

> > > > G

> > > >

> > > >

> > > >

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

> > membership

> > > in

> > > > the CHARGE Syndrome Foundation.

> > > > For information about the CHARGE Syndrome

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

> > > > please contact marion@... or visit

> > > > the CHARGE Syndrome Foundation web page

> > > > at http://www.chargesyndrome.org

> > > > 7th International

> > > > CHARGE Syndrome Conference, Miami Beach, Florida, July

22-24,

> > 2005.

> > > > Information will be available at our website

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

> Canada,

> > you

> > > may

> > > > contact CHARGE Syndrome Canada at 1- (families),

> visit

> > > > www.chargesyndrome.ca, or email info@.... Thank

> you!

> > > >

> > > >

> > > >

> > > >

[Guest guest]

HI,

Maybe I can offer a little peek into the future and a little

encouragement. At 6 years old , 6 months before 's ASD was repaired she

weighed about 35 pounds and was about 42 1/2 inches tall. 6 months after the ASD

repair at age 7 she was about

50 lbs. and about 44 1/2 tall. They waited as long as they could to repair the

ASD so the patch would " take for life " . It did. On her 16 birthday her test were

" perfect " . She " grew " like a weed. She was healthier after the repair and had

more energy . Funny we never thought the ASD ever slowed her down until she we

so so active after. At 19 she is 5' 2 " and 110 -115 pounds.

I know all CHARGE kids are different but being tiny isn't so bad.

HAPPY NEW YEAR TO ALL.

Blessings and Hugs,

Lynn

Mom to Tom 24, 19,cHARGE, and wife to Doug

Re: 's & Kennedy's heart surgery coming up

Ok-- my little peanut turned 6 on Nov 20 and is barely 36 lbs and probably

about 36-37 " tall! And to top it off -- she is outgrowing clothes -- unless I'm

just shrinking them with my notoriously bad laundry skills!!! :-) I was

thrilled while shopping today to find some little jeans that fit her tiny butt

and are long enough for her legs. Most have to be way too short to fit in the

waist. I know she's tiny compared to her " typical " peers, but I didn't realize

how tiny she was compared to her CHARGE peers also.

Michele W

Aubrie's mom

very similar to Kennedy's she will be 6 on January 27th and she is

45 lbs and 45 inches tall.

[Guest guest]

Kids of all ages are so fun. and I " shopped till we dropped " yesterday. I

am just glad I can keep up with her.

I am married to an electrician and I don't have a door bell or a back porch

light either. We can keep hoping.

Happy New Year.

Lynn

's heart surgery coming up

> > > >

> > > >

> > > >

> > > > Hi to all,

> > > > I have been reading of Lucas and his upcoming heart

> > surgery...

> > > > was scheduled for December 15th, but developed an ear

> infection,

> > so

> > we

> > > > are now scheduled for January 6th. When she was 12 days

old

> > they

> > > had

> > > > to repair a coarctation and ended up using a Gore Tex patch

on

> her

> > > > aorta. Now, since she has grown, and the patch didn't, her

> aorta

> > is

> > > > narrowed too much again. She has actually grown collateral

> > vessels

> > to

> > > > help herself. They originally thought they could use a

stent,

> but

> > > have

> > > > decided to open her chest and replace the patch. The

> coarctation

> > is

> > > in

> > > > a place where a stent may cause other problems with plaque

and

> > > > blockages, especially with her small size. (she will be 8

at

> the

> > end

> > > > of January, but is only 44 pounds and about 44 inches tall.)

> > Maybe

> > > not

> > > > too small for a CHARGEr, but my just -turned- 4 -year old is

> > bigger

> > > > than ! And my 11 year old is already 5'6!

> > > >

> > > > I am scared for her, but I also know that it is

> necessary...The

> > > waiting

> > > > is so difficult...and I can't help thinking about some of

the

> > worst

> > > > outcomes...she is such a special little girl...

> > > >

> > > > Put her in your prayers again, if you please...

> > > >

> > > > G

> > > >

> > > >

> > > >

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

> > membership

> > > in

> > > > the CHARGE Syndrome Foundation.

> > > > For information about the CHARGE Syndrome

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

> > > > please contact marion@... or visit

> > > > the CHARGE Syndrome Foundation web page

> > > > at http://www.chargesyndrome.org

> > > > 7th International

> > > > CHARGE Syndrome Conference, Miami Beach, Florida, July

22-24,

> > 2005.

> > > > Information will be available at our website

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

> Canada,

> > you

> > > may

> > > > contact CHARGE Syndrome Canada at 1- (families),

> visit

> > > > www.chargesyndrome.ca, or email info@.... Thank

> you!

> > > >

> > > >

> > > >

> > > >

[Guest guest]

For those of you whose children are going to have heart surgery soon, please

know I will hold you all in my prayers. It saddens me to think of anyone

going through that, especially a child. May you all find the strength you need

to

comfort your children as well as the strength within yourselves to carry on

at that time. Our hearts are with each of you.

Bonnie

[Guest guest]

Thanks for the encouragement Bonnie...

Re: 's & Kennedy's heart surgery coming up

For those of you whose children are going to have heart surgery soon,

please

know I will hold you all in my prayers. It saddens me to think of anyone

going through that, especially a child. May you all find the strength you

need to

comfort your children as well as the strength within yourselves to carry

on

at that time. Our hearts are with each of you.

Bonnie