Re: 's & Kennedy's/

[Guest guest]

And 's birthday is January 31! She will be 8...hard to believe

we've come this far. Of course, she is excited that surgery is

postponed because she gets to go back to school and be with her friends!

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!

>

>

>

>