Re: 's heart surgery coming up

[Guest guest]

she's in our prayers--my 8 year old is about 45 pounds and 47 inches. and

no heart problems. my almost 6 year old is 46 inches and 50 pounds, and my

3 year pld almost 40 pounds and about 41 inches!!! there's no getting

around it, unless we do hormone therapy and it's works a great deal--timmy

is bound to be the smallest of the 3.

happy new year!!

'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]

Keep praying everyone. caught a cold. Surgery is postponed

again until January 20th.

G

> ,

> 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]

Prayers keep coming. Even though the postpondments are fustrating, they are

necessary.

Blessings and Hugs,

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]

,

Sorry she's not feeling well. RE: your other post...That will be the

hardest part for Kennedy, missing school/friends for over 2 weeks....

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!

>

>

>

>