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Steffi,

I also looked into getting some plastic surgery done with 's ears. I

see the plastic surgeon yearly but he warned me that if would not

keep his hands away from the bandages or pull on his ear, then the surgery

would be a waste. So we continue to wait until we feel can handle

leaving it alone.

Good Luck!!

Nicol mom to 7 CHARGE, Jordan 3, and baby due May 9

At 08:33 PM 9/8/01 -0400, you wrote:

>It's that time again. More surgery! On the 20th, is going to have

>some cosmetic work done on his ear, so we can finally get the second hearing

>aid to stay in. He is also getting his 3rd set of ear tubs and dental work.

>I love the fact that the doctors are so willing to work together to prevent

>lots of separate surgeries. I feel a little funny about getting his ear

>repaired. I am so used to that cute little ear sticking out. Has anyone

>else had ear repairs done. Dr. Shah (from the conference) has been '

>ENT since the Houston conference. Anyway, he said it is a long healing time

>of 4-6 weeks. How am I going to keep bandages on his ear? I know he will

>rip them off! I worried already!

>

>Steffi

>

>

>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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steffi, thoughts will be going your way the 20th, we find out the 14th if

and when timmy has surgery--nose, ears--tubes, adnoids. it never ends, when

you think it will. how is riding going? timmy is in group lessons this

session--so far, so good. irene is going to see timmy on tues at school--i

love her!!

maria

ear surgery

> It's that time again. More surgery! On the 20th, is going to

have

> some cosmetic work done on his ear, so we can finally get the second

hearing

> aid to stay in. He is also getting his 3rd set of ear tubs and dental

work.

> I love the fact that the doctors are so willing to work together to

prevent

> lots of separate surgeries. I feel a little funny about getting his ear

> repaired. I am so used to that cute little ear sticking out. Has anyone

> else had ear repairs done. Dr. Shah (from the conference) has been

'

> ENT since the Houston conference. Anyway, he said it is a long healing

time

> of 4-6 weeks. How am I going to keep bandages on his ear? I know he will

> rip them off! I worried already!

>

> Steffi

>

>

> 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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HI - just thought I'd let you know that the ear surgery was one of the

easiest we have had so far. had no pain. The big head dressing just

gets itchy after a week. I think she had it on for maybe 10 days. removing

the stitches was not great but he should have no problem at all. BTW- post op

was alot of vomiting which they said is common when working on the ears. Also

her aid is now in the ear since the surgery since the surgeon did NOT want

any pressure from glasses or hearing aid to push the ear down. she had gone

back to her glasses maybe 2 months after but he really pushed us to switch to

an in the ear aid and she is fine with them. good luck

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Okay guys, you have me a little nervous about those bandages. I am hoping

for the best. will probably try to take the bandages off, but if I

keep him distracted, I hope to " win the battle " . We really want to be able

to put the second aid in, since that ear has the better hearing. I didn't

know vomiting and the ears had so much in common. No wonder why is

such a retcher! I'm glad it was an " easy surgery " . I don't think I can take

anything major anymore :)

Thanks! Steffi

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  • 3 weeks later...

glad to hear all went well--glad the brushing is working also.

maria

EAR SURGERY

> What a success!!!!! Dr. Shah is the best ENT! ' ear looks

amazing.

> The otoplasty will now let us put a hearing aid in his right ear.

> tried to pick at his ear the first day, but now has left it alone. Every

> once in a while, he tries to play with the stitches, but nothing major.

He

> was almost discharged that same day (he also had ear tubes again & dental

> work)! We stayed over night just to make sure because he was so sleepy we

> were nervous. He woke up in the morning when Dr. Shah removed his

bandages

> and played as if nothing happened. He didn't nap the entire day even on

the

> Tylenol w/ codeine! I am so happy we did this. His ear looks almost

> " normal " . The only thing is he has no ear lobe, but we were not adding

any

> ear or cartilage because he is only 2 1/2. So, now we are crossing our

> fingers that we may get some responses with two hearing aids. Wish us

luck!

>

> Happy as can be :)

> Steffi

>

>

> 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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