Zoey's Cardiology & Genetics Appts

[Guest guest]

That's great news from Cardiology, I hope they can figure out what is up with

her liver & spleen though.

RE: diagnois: I'd get a 2nd opinion (about CHARGE diagnosis with that many

features) Choanal atresia is not the determining factor. Maybe you could even

send a photo to Meg, she is " the " CHARGE geneticist, who graciously participates

when she can on this listserv. Just my opinion.

Please keep us posted April...

~ Weir

Mom to Kennedy, 5yr old CHARGEr, 13, 11, and wife to Graeme

Saint , New Brunswick, Canada

Visit the Weir Family Website - http://personal.nbnet.nb.ca/gweir

CHARGE Syndrome Canada - http://www.chargesyndrome.ca

Re: My daughter Zoey (this is kind of long..sorry)

April,

Hello and welcome to the list ...First of all the large liver goes

with the heart issues (witch I was told is a good thing because it means

the liver is doing what it can to make up for the heart) Yes having

heart probelms fixed helps with growth to a certain point ...My son had

his second heart surgery in november ( he is 17 months old ) and he

started growing not as fast as a " normal " baby but faster then he was

now is n growth hormones he is really growing (he is actually fitting

some clothes that are 12 monhs LOL) get used to the people thinking she

is younger then she is.. It gets really funny when they start doing

things that are age approprate and are half the size they should be then

people think you have a baby genuise LOL

, mom to and baby # 2 who I think wants to be born

today.....

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