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Re: Billy

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,

I'm glad is doing okay, sounds like he's got that good ol' CHARGE stubborn

streak... he'll show those docs!!!!

Keep us posted...

~ Weir

Mom to Kennedy, 4yr old CHARGEr, 13, 11, and wife to Graeme

New Brunswick, Canada

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

ICQ# 1426476

billy

did fine with the surgery itself... he has a temp that he has had since

he came out ...his heart rate is up and his trach secretions are off colored but

he isnt acting to bad ......he is no longer BLUE not even his finger and toe

nails but boy is he a BRAT ....He took himself of the vent about 5 times took

out his urinary cath. an IV and all his probes and was working on his chest

tube when the decided they better paralize him.. he did all this with his hands

tyed down.. the sedation they gave his clearly didnt work ....He was so mad and

it was all because of his arms being tyed down I kept trying to tell them that

but of course they wouldnt listen till yesterday morning when they went to clean

him up and as soon as they let him loose he calmed right down ... he isnt out of

the wood yet but last night his temp and his heart rated started coming down so

HOPEFULLy he will be ok ..He truely is an amazing kid ...he wasnt acting like he

was in pain just really really mad it would of been funny if he wasnt going to

hurt himself...he got his insicion bleeding pretty good so I got to see that

when they changed the bandage it didnt look bad at all ..I can now suuction him

with the vent....I guess that it for now

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, its good to hear from you and also to know that did

fine with the surgery, mother always knows what to do best with her

child, youve proved it once again. LOL

Pushpa grandma to Aman 13 months

Keep your face to the sunshine and you can never see the shadows-----

Helen

Keller.

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the temp is down and they are now weaning him from the vent WWWWWWOOOOOOOOO

HHHHHHHOOOOO he is doing great!!!!!!!!!MAry

, This is wonderful news... He'll be home before you know it...

~ Weir

Mom to Kennedy, 4yr old CHARGEr, 13, 11, and wife to Graeme

New Brunswick, Canada

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

ICQ# 1426476

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-

From the keyboard of slush1227:

> the temp is down and they are now weaning him from the vent WWWWWWOOOOOOOOO

HHHHHHHOOOOO he is doing great!!!!!!!!!MAry

That is good news!! Glad the surgery went well also!!

Hugs,

Debbie

--

+ Debbie Tropiano -- debbie@... -- http://www.icus.com/personal.html +

| Mommy to b: 8/17/1995, ^Sara^ b: 10/25/2000 d: 11/7/2000 & |

| Leah b: 10/17/2001 a: 9/26/2002 " God shows His opposition to cancer and |

| birth defects, not by eliminating them or making them happen only to bad |

| people (He can't do that), but by summoning forth friends and neighbors |

+ to ease the burden and to fill the emptiness. " -- Harold S. Kushner +

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  • 4 weeks later...

,

That is hilarious about him playing you guys like that and I think very typical

with these guys. THey sure know how to manipulate everything and

everyone....they are pretty smart...good luck - we are still dealing with Queen

Manipulator...:)

~ Weir

Mom to Kennedy, 4yr old CHARGEr, 13, 11, and wife to Graeme

New Brunswick, Canada

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

ICQ# 1426476

Hello to all ....

WE made it home for Christmas ...hopefully we will stay here for a

while this time but at this point I am not holding my breath....I never

got any christmas shopping done luckly is to small to know the

diffenrnce and being in the hospital the weekend before Christmas they

sure make up for it every group possible had a asanta come threw and

hand out toys (usually giant stuffed animals) it took two car loads to

get all the gifts home so he still made out like a bandit..

Here is a good question for all of you ...How do you keeps your kids

from becoming super brats??? this kid is becoming very very monipultive

I can not beieve some of the things he has been doing like he was

sitting there the other day looking like he was crying his eyes out ( he

has the trach so e make no noise when he crys) so I asked him what was

wrong and he starts laughing like it was the funniest joke he ever did

...thats is his favorite one right now he has been doing it to get out

of every thing (like chst PT physical theropy ect.ect.ect. and it is so

hard to not laugh at hi whenhe does it HELP

http://community.webtv.net/maryechick12/

http://community.webtv.net/maryechick12/pets

http://community.webtv.net/maryechick12/birthdayboy

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

6th International CHARGE Syndrome Conference, Cleveland, Ohio,

July 25-27, 2003. Information will be available at our website

www.chargesyndrome.org or by calling 1-.

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I am new to this group, so I don't know anything about .. but if it

helps, the old story of " The Little Boy Who Cried Wolf " is appropriate for

situations like this. God Bless everyone and have a safe Holiday Season!

Suzi ~ ~

o

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