Re: to lynn

[Guest guest]

Belinda,

No, and I will not be in Miami. I have explained before that

chooses to distance herself from CHARGE right now. She had never felt she was

different except for her hearing aids. Drs. never diagnosed CHARGE officially..

I found it myself. Finding out at 17 there probably was a name for what you

have doesn't intrest at this point. She was always called " medically

fragile " and she doesn't even feel that way anymore.

It's kind of hard to explain.

I am the one who has been helped by knowing " where I had been all alone. "

We didn't have a computer let alone the CHARGE List. I have " healed " a lot of

hurt by looking back and understanding where I have been.

Thanks for asking about Miami. I went to Cleveland by myself because it was

only 60 mile from my home and I was blessed with a scholarship.

You will love the conference. I will be there in spirit and if anyone can

email from the conference, I will respond too.

Lynn

's good news

> Hi,

> I went with to her ear post-op appointment. (When your

> daughter is almost 20 , 9-7-04, you no longer " take " them to the

> doctor. We are so blessed, she takes herself.

> Her ENT was so pleased to see that she is healing ahead of

> schedule. She always has healed fast. With her aids her hearing in

> both ears in back to what is normal for her. She hasn't heard a

> word out of the right ear for about 8 months. We can now stop

> shouting and repeating.

> She had the same surgery 9 years ago. The ENT feels that she

> should be good for about another 10 years. The surgery may need

> repeated again later.

> We had a wonderful " girl's day out " . We went shopping( my

> treat) and out to lunch on Mom . I took her to the grocery store

> and paid for a cart full of food for my college kid. She is so

> grateful for the things her Dad and I do for her it was a pleasure

> to by her food for her apartment. Her roommates were excited too.

> I start back to school tomorrow, the students come Monday.

> starts her second year of colege classes on Monday.

> Best wishes to all the teachers, support staff, and students in

> CHARGE land. The school year begins!

> Blessings and Hugs!

> Lynn

> Mom to Tom 24, ,cHARGE, 20 on Sept. 7th and wife to Doug

>

>

>

>

> 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!

>

>