Various

[Guest guest]

Hi-

Happy Easter and thanks for the great Cards Im hoping I was able to

successfully email jellybeans to my nieces and nephews - I bet

they'll

get a kick out of them.

Any update on Doreen out there? Its been a few days at least and I

have not seen any posts.

ANy info would be appreciated

What is a stamp party?

Thanks,

MIA

[Guest guest]

Hello Tracey.

Just wanted to say hello. Hope all is well in Canada. I'm pretty new to the

list and it is a huge comfort to know that others are experiencing the same

kinds of stuff. Take care and God bless.

Lynda Dean, mom to charger (11months), wife Dean

[Guest guest]

Tracey,

It's great to hear from you, it sounds like Sullivan and Kennedy have some

similarities in the potty area. If I come up with any good ideas, I'll

certainly pass them along. It's wonderful to find out that even though some

people don't post on the list that often, that it is still useful for them.

I hope you can pop in again and give us a " Sullivan " update!

~ 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

various

Hi all

I have been a silent reader for a long time now and I am really

finding that the experiences that you are going through are so

similar to the life we live with our little charger, Sullivan. He is

now 31/2 years old. Thank you all for sharing, I am consoled by the

fact that although we are each in very different situations, living

with very unique individuals, there is a sameness to our experiences.

1. Potty training. This keeps coming up and Sullivan isn't

interested in it at all. Sometimes we think that because he has such

a high threshold for pain, and he has always been tactily defensive,

maybe he just doesn't feel it. He could care less about sitting in a

poopy diaper. We've decided for now, that because it doesn't bother

him, we aren't going to worry about it. If he want's to sit on the

potty for awhile that's fine but we have no expectations.

2. Communication. Sullivan has profound hearing loss and the tubes

in his ears are always plugged, yet he appears to be a very oral

child. However, we have also found that he responds way better

(especially with discipline) to ASL.

3. Suctioning in hospital (and with new homecare nurses). Yes! We

went through that too!!!! Funny that! Remember the principles of

Family Centered Care (and remind the professionals at every

opportunity) " the family really does know best " .

4. Feeding, sleeping ( & aopnea), school, friends. There are so many

questions, no concrete answers.......

Thanks one and all for sharing your stories. I have used them, with

the professionals, as evidence of trying something unconventional, I

am comforted by them and sometimes (ok lots) I cry. Keep up the good

work moms and dads, aunts and uncles, grandparents, family and

friends, we have one heck of a community and we sure are a lucky

bunch of people because of eachother.

Take care

Tracey

Winnipeg, Manitoba, Canada

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-.