log9901b

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Date: Fri, 8 Jan 1999 09:48:03 -0600
Reply-To: Information exchange and Internet safe haven for Apert Syndrome
 and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
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From: Carbide Tech <ruth@CARBIDETECH.COM>
Subject: I'm back!!!
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Hi guys!

This is Ruth Contreras, mother of Kris, I have been out for-ever!!!! I was
having computer problems and I could not write to you all, but I did read
everyones comments. My computer is finally fixed!!!!

First, welcome to everyone! It's good to know I'm not alone! I especially
want to say hi to Zoe and Mom who I almost met in November, but
unfortunately, things didn't go my way and had to cancel. I hope and pray
that she is doing much better. Is she out of the hospitaL yet?

And to every newcomer, We live in the Houston area and my Kris is 15 years
old. We are working on her Quinceanera (15 yr.old coming out- ritual, big
deal in the Hispanic community). She is real happy for that. She wants
"Folklorico" dancing
at the reception. She has had 24 surgeries and is getting worse on
"dealing" with the issues. It used to be we could say, "The Dr. is going
to "fix" your finger". Now, we have to deal with issues like- "leave me
alone, I want to stay like this" because she is so afraid. All in all, God
had sustained us and we are still hanging on.

For those of you who remember me talking about bringing Miss Vivi from
Argentina to have her surgeries done here, We (her sister Claudia, who
lives in San Francisco) were working on bringing her to S.F. to be near her
sister, We had the airline tickets, we had Ronald McDonald saying Ok, and
we had all of the surgeons saying they would do it for free. But the
hospital was the one that was taking forever to say ay or nay. Well we
just decided to start working on bringing her here to the Houston area. So
I am now working on that. Pray for me.

Sorry its long, I have lots to say. Lots to catch up on.

Hi to the Sieberts and the LeCara's also from the Houston area. Nice to see
you, Tamara. How's Grandma?

Also to my good friend Mrs. Sherry Belsley, who shares Kimberly and Edward
with my family. We love them so much. When are we getting together again?

Am I the only one who has not received any mail in the past 2 days? Is my
computer acting up again?

Nice talking to you all. Second family.

Ruth Contreras
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Date: Fri, 8 Jan 1999 20:19:12 EST
Reply-To: Information exchange and Internet safe haven for Apert Syndrome
 and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and Internet safe haven for Apert Syndrome
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From: GSieb91515@AOL.COM
Subject: Re: I'm back!!!
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Ruth,

Hi and welcome back. How is Kris? Please let me know if there is anything I
can do to help get things organized for Vivi to come to Houston. I'd love to
help in anyway possible.

Brenda Siebert
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Date: Fri, 8 Jan 1999 20:23:01 EST
Reply-To: Information exchange and Internet safe haven for Apert Syndrome
 and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
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From: GSieb91515@AOL.COM
Subject: Re: Zoey's update
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Christina-

My mom was able to come and spend about 5 weeks with us over the holidays and
for Jonathan's last surgery. She was such a big help. I don't think she
realizes how much help she was. Especially with my 9 yr. old daughter
(Melissa). We miss her already. I know what you mean about dad's. I was
always partial to mine and now Melissa is partial to George.

We contine to pray that Zoey improves daily and that she is back home in your
arms soon. Please let us know how things are going when you can.

Brenda
Houston
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Date: Fri, 8 Jan 1999 22:31:07 EST
Reply-To: Information exchange and Internet safe haven for Apert Syndrome
 and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
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From: Nodrmat26@AOL.COM
Subject: Re: Zoey's update - Friday
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Zoey's Mom here~
Zoey is about the same as she was on Monday, so I'm a little frustrated, but
hanging in there. She's still to weak to move much, so she can't fend for
herself...so I'm there most of the day and night. That's about it for now.
Hopefully I'll have some news over the weekend. Bye now.

Christina
S.A.
=========================================================================
Date: Sat, 9 Jan 1999 10:25:21 PST
Reply-To: Information exchange and Internet safe haven for Apert Syndrome
 and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and Internet safe haven for Apert Syndrome
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From: christine bucci <christinebucci@HOTMAIL.COM>
Subject: apert's
Comments: cc: noneapert@listserv.aol.com
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hello everyone and Robin

what i meant when someone reaches retirement age is the physical aspects
of apert's. For example, i have club feet and wear corrective shoes.
When i get older will i have the same mobility to walk as i do now.? i
remember as a child seeing an older person with these black shoes with
heel and boy were they small. i have very wide feet. i am also
wondering cwhen i get older will i have the mobility in my hands as i do
now? is there anyone out there with apert's
in their 60's? if anyone out there has any questions for me please
feel free to ask. i am using a computer at the library so i get
here every chance i get. so long for now. happy new year.

______________________________________________________
Get Your Private, Free Email at http://www.hotmail.com
=========================================================================
Date: Sat, 9 Jan 1999 12:31:35 -0800
Reply-To: Information exchange and Internet safe haven for Apert Syndrome
 and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and Internet safe haven for Apert Syndrome
 and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: "Christine L. Clark" <apertnet@IX.NETCOM.COM>
Organization: APERT SUPPORT & INFORMATION NETWORK
Subject: Re: apert's
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> is there anyone out there with apert's
> in their 60's?

The oldest person I have on the networking list is John Moulton in Maine.
Give him a call from your list. He is a great person and nice to talk
to. If you can't find your network list, let me know if you need his
number.

Take care.

Christine Clark
=========================================================================
Date: Sat, 9 Jan 1999 12:43:07 -0800
Reply-To: Information exchange and Internet safe haven for Apert Syndrome
 and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and Internet safe haven for Apert Syndrome
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From: "Christine L. Clark" <apertnet@IX.NETCOM.COM>
Organization: APERT SUPPORT & INFORMATION NETWORK
Subject: Coming back, a little at a time!
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Hello to all,

First, I want to thank all of you who have sent e-mails and cards since I
developed breast cancer. It was very nice and helped me get through the
rough times.

After being released from the hospital from my stem cell transplant I did
a bit of recupperating and then started my 6 weeks of radiation. I just
finished this week and now I am finally through with chemo & radiation,
essentially no more polluting my body. I can concentrate on finally
healing. I have to wait at least 3 months before I can continue with the
recontruction process.

I have a heck of a burn on my chest and I am feeling really tired but am
slowly trying to get back to par. With any luck, I hope to be producing
newsletters again in a few months. First, I have to weed through a few
hundred e-mails and requests from new families for information. Thanks
for your patience.

HAPPY NEW YEAR to everyone. May this one be better than the last!!!!!!!

All my best,

Christine Clark
Apert Support & Information Network
P. O. Box 1184
Fair Oaks, CA 95628
(916) 961-1092 (phone + fax)
apertnet@ix.netcom.com
=========================================================================
Date: Sat, 9 Jan 1999 19:50:12 EST
Reply-To: Information exchange and Internet safe haven for Apert Syndrome
 and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and Internet safe haven for Apert Syndrome
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From: BBarn60368@AOL.COM
Subject: Re: Network list
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Christine Clarke:

You mentioned a "network list" in your last e-mail. Does everyone have access
to this"list"? Please let me know how to access it, if so.

Thanks,
Alice in Orlando, Florida
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Date: Sat, 9 Jan 1999 21:54:40 -0800
Reply-To: Information exchange and Internet safe haven for Apert Syndrome
 and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and Internet safe haven for Apert Syndrome
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From: claudia salazar <pcbaas@HOME.COM>
Organization: @Home Network
Subject: Re: Zoey's update - Friday
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Christina,
I will be praying for you and your family, I can empathize with you...it
is draining to be there so much, but more worry when you are away...Hang
in there We are all thinking of you.
Claudia

Nodrmat26@AOL.COM wrote:
>
> Zoey's Mom here~
> Zoey is about the same as she was on Monday, so I'm a little frustrated, but
> hanging in there. She's still to weak to move much, so she can't fend for
> herself...so I'm there most of the day and night. That's about it for now.
> Hopefully I'll have some news over the weekend. Bye now.
>
> Christina
> S.A.
=========================================================================
Date: Sun, 10 Jan 1999 16:54:13 EST
Reply-To: Information exchange and Internet safe haven for Apert Syndrome
 and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
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From: Yonstein@AOL.COM
Subject: Re: Coming back, a little at a time!
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Dear Christine:

It's so nice to hear from you. You sound great. I am glad to hear that your
polluting process is over, finally. Here's hoping that you get stronger every
day. Take your time with the newsletters, although I do miss your humor.

Best wishes,

Janine Krebs
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Date: Mon, 11 Jan 1999 10:09:56 -0500
Reply-To: Information exchange and Internet safe haven for Apert Syndrome
 and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
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From: Andrea Gartner <agartner@PEGANET.NET>
Subject: Update
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Hi everyone,

Time is sure flying for me.
First I'd like to wish each and everyone out there a very happy new year.
I hope '99 treats you and yours well. I hope everyone had a happy holiday.

'99 will be a big year for me. I'll be turning 21 on Jan 14, (just a big
number with
little meaning.. I barely drink). I'll also be graduating from Edison
Community College in April. I'll receive an Assoiciates of Arts degree in
Human Services. It's not the actual graduating that I'm happy about. To
me, its more of a personal acheivement. College isn't over for me yet.
I'll be transfering to the new Florida Gulf Coast Univ. and Major in Human
Services. Someday I hope to obtain my Masters in Medical Social Work.
(Like I said, someday) Transferring will also be a big change since I'll
be living on
campus and not at home.

I've also decide to have craniofacial surgery done. My parents and I saw
Dr. Anthoney Wolfe on Friday, to see the different options. Well, he said
at my age, the best thing to do is to have a Frontal Orbital Advancement
first, and then a Lefort III three months later. Having the two separate
surgeries would decrease the chance of infection. Personally, I'm a little
scared, but inside I know there are a lot of positive effects. During the
past two years I didn't consider any surgery because I felt comfortable
with the way I look, and still do. Then I gave a more thought about the
positive aspects of it, more socialability. I'm getting to the point where
I am really sick of people not accepting my difference, especially when I'm
out trying to have fun. I'll be having the surgery on May 13. Please keep
me in your prayers during that time. I think some of you had seen or had
surgereis with Dr. Wolfe? Were you happy with him and the results? Any
feedback would be greatly appreciated.

Ears-
During my last visit to the ear doctor, my ear doctor mentioned a he can do
surgery that involves moving a tiny bone to improve my hearing 90%! He
won't know exactly what will happen until he actually goes isnide. The
surgery would take 1 hour. Has anyone ever heard of something like this?
I'm considering it, but not sure.
=========================================================================
Date: Mon, 11 Jan 1999 10:09:58 -0500
Reply-To: Information exchange and Internet safe haven for Apert Syndrome
 and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and Internet safe haven for Apert Syndrome
 and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Andrea Gartner <agartner@PEGANET.NET>
Subject: E-mail responses
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I'm trying to catch up on e-mails.. .

Tearing -
I would tear constantly in cold weather. My friends would always
ask if I was crying. I hope the tearing problems aren't serious.

Sleeping
I also sleep with eyes half open, and my breathing changes.

Fosters -
I hope all the stomach virus and ear infections disappeared.

-I hope everyone up north stays warm and safe.

Carlee
I hope your surgeries are successful. Enjoy those fingers. Even
though they're 3, you'd be amazed at what they can do.

Zoey-
Your in my thoughts and prayers. I hope you feel better soon!

Christine-
Im glad to hear your doing better!! Keep it on going!

Ruth-
Good Luck getting Vivi over here.
=========================================================================
Date: Tue, 12 Jan 1999 18:33:20 EST
Reply-To: Information exchange and Internet safe haven for Apert Syndrome
 and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
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From: BBarn60368@AOL.COM
Subject: (no subject)
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Hello Everyone!

I have a question about a product. Does anyone use the "ear candles" that
they sell in the health food stores, to remove ear wax? I guess our kids all
have the ear wax problem that Shirley has, and I am forever trying to find a
safe, painless way to remove it. We have had to let the Dr. do it at least 4
times with the "water pick" and Shirley usually ends up in a fetal position on
the floor afterwards because it is so traumatic. The ear wax removal drops at
the store usually say not to use them if there is a hole in the ear drum and
most of our kids have had several sets of tubes. I can't and would not even
try to get it out with a Q-tip.

I tried the candles this weekend and thought they were great, but have gotten
some negative feedback from people since. Shirley's doctors don't recommend
them, but I don't imagine they recommend anything that comes from a health
food store.

For those of you that don't know what they are: They are a hollow tube that
is about 12" long and tapers at one end. That end is placed in the ear and
the other end is lit, while you lay on a pillow or etc. The tube then acts
like a chimney and sucks the softened wax into the tube. I have to say more
wax came out of Shirley's ears than I have ever seen come out at the doctor's
office. The tubes were packed about 1-2" up the tube which is larger around
than a pencil.

Anyone have an opinion? How about your doctors? Has anyone asked them?

Let me hear from any of you,

Alice in Orlando, Fl.
=========================================================================
Date: Tue, 12 Jan 1999 21:30:37 EST
Reply-To: Information exchange and Internet safe haven for Apert Syndrome
 and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
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 and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Nodrmat26@AOL.COM
Subject: Zoey
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Zoey's Mom here~

Zoey just received a birthday gift from the Hill's today! What a nice
surprise. I haven't opened it, I'll let Zoey do that when she gets home. She
is doing VERY well today. This morning they took out her last chest tube, her
feeding tube and took her off her vent. And she did great all day, even with
all the changes. She's alot happier and we both had a good day. I've been
able to hold her, however she's not strong enough to hold her head up, so it's
a little awkward. It's like holding a 25 lb infant! I'm so happy she's doing
better! Thank you everyone for praying and thinking about Zoey.
Take care!
Christina
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Date: Tue, 12 Jan 1999 22:14:09 EST
Reply-To: Information exchange and Internet safe haven for Apert Syndrome
 and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
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From: TDeakins1@AOL.COM
Subject: Re: (no subject)
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It works. Amazingly enough, it works. My daughter introduced us to the idea
and it's been great for her.
-Tony Deakins
St. Augustine, FL
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Date: Tue, 12 Jan 1999 20:17:45 -0800
Reply-To: Information exchange and Internet safe haven for Apert Syndrome
 and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and Internet safe haven for Apert Syndrome
 and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: claudia salazar <pcbaas@HOME.COM>
Organization: @Home Network
Subject: Re: Zoey
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Hooray! What a trooper! Hang in there....
Claudia and Allie

Nodrmat26@AOL.COM wrote:
>
> Zoey's Mom here~
>
> Zoey just received a birthday gift from the Hill's today! What a nice
> surprise. I haven't opened it, I'll let Zoey do that when she gets home. She
> is doing VERY well today. This morning they took out her last chest tube, her
> feeding tube and took her off her vent. And she did great all day, even with
> all the changes. She's alot happier and we both had a good day. I've been
> able to hold her, however she's not strong enough to hold her head up, so it's
> a little awkward. It's like holding a 25 lb infant! I'm so happy she's doing
> better! Thank you everyone for praying and thinking about Zoey.
> Take care!
> Christina
=========================================================================
Date: Tue, 12 Jan 1999 22:01:53 -0600
Reply-To: Information exchange and Internet safe haven for Apert Syndrome
 and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and Internet safe haven for Apert Syndrome
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From: Judy Amerman <jamerman@UTI.COM>
Subject: What a day!
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I am finally calmed down enough to share with you all what happened to me
today.

First though I have to go back in time.

When we first moved to this house 11 years ago. There was a little boy and
little girl that use to spend hours over here. They were given alot of
material things at home but not alot of quality time.

In June of 95, this little boy had grown to be 15 years old.
One day when I had to work, my husband's daughter picked up Nick from the
sitter's after she got out of school. I had left the door unlocked for her
since she didn't have a key. When she walked in and was heading down the
hallway. Something caught her eye. It was Ray, the 15 year old in the
house. She asked him what was he doing here. He proceeded to tell this
story that there was some kids knocking on my windows and was going to get
in the pool. Yeah right! In broad daylight at 4p.m. I don't think so.
Any way, The sheriff's dept. was called and the detective questioned him
and discovered that he was really snooping around.
Two weeks later, my phone bill came and it was discovered what he was
really doing here. $241.00 worth of 900 calls. The detective was called
again and the kid wound up with a juvie record.

I have had nothing to do with this kid since then.

At roughly 2:50 p.m. today, I was sitting in the living room surfing
channels and heard a noise at the back door. As I went to investigate, I
came face to face with this kid in my kitchen. I looked him square in the
eyes and said "What the hell are you doing in here?" He looked like a
scared rabbit. He started on about needing a shovel. I said,"you didn't
even knock at the door, You just walked into my home." He started saying
that he knocked on my door which was a lie. Then I said "Do I need to call
the cops on you again? He says "NO NO" I just looked a him and said,
"Get the hell out of here.

I called his mother at work. She wanted to believe that he really needed a
shovel. Yeah right! She is one on these people who always blames someone
else when her kid does wrong.

Anyway I called my detective friend again and he went to arrest this kid
for criminal trespassing. A few hours later, The detective called me and
said that Ray had been booked for residential burglary. It seems that
once questioned he admitted he was looking for money. Since he was caught
in the house and the intention was to steal, that was the charges.

If that kid really needed a shovel, my house would be the last place he
would go. I wonder now that he has been booked as an adult with a felony
what is going to happen.

It is really bad when you live in a nice neighborhood and some delinquent
like this. Now I feel I need todo something drastic. Do I get a gun,
security system. I just don't know what to do.

Poor Nick comes home from school to find two detectives in the house.

He knows what happened and I know that he is going to start getting
fearful. Any ideas on how to handle this?

Other than that, I had a great day.
Thanks for listening

Judy
=========================================================================
Date: Tue, 12 Jan 1999 22:13:09 -0600
Reply-To: Information exchange and Internet safe haven for Apert Syndrome
 and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and Internet safe haven for Apert Syndrome
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From: Judy Amerman <jamerman@UTI.COM>
Subject: funny story
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Hi again,

Since I had such a rotten experience to share with you, I thought I would
share something funny too.

Yesterday Nick came home from school and said that Stephanie, a little girl
in his class was laughing at him. I asked him why.

Whe he told me, I just couldn't keep a straight face! It seems that when
he was pulling off his snowpants at school, he was pulling down his jeans
too. I'm sure that he was quite embarrassed. I asked him if he would
laugh if that happened to someone else. He told me Yes.

Then I said that sometimes you just have to learn to laugh at yourself.
He seemed to like that answer.

Judy
=========================================================================
Date: Tue, 12 Jan 1999 23:36:47 -0500
Reply-To: Information exchange and Internet safe haven for Apert Syndrome
 and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and Internet safe haven for Apert Syndrome
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From: Timothy Holt <tholt@WEBTV.NET>
Subject: Surgery
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MIME-Version: 1.0 (WebTV)

Thank you for all the prayers. Courtney is doing well, with ten
fingers!

The tubes went well also.

However after surgery for the first three days she had an upset stomach,
and was in a lot of pain. She is back to her "old self" again.

Zoey and MoM~
You are still in our prayers. Glad to hear about the recovery! Hope
Zoey gets well soon!

Carlee~
Glad you recovered as well. We are thinking of you and Cristy!

I loved the story of the chopsticks! Since Courtney is only seven
months old, we still have a lot to learn!

Mechelle Holt address:tholt@webtv.net
=========================================================================
Date: Wed, 13 Jan 1999 12:11:27 -0800
Reply-To: Information exchange and Internet safe haven for Apert Syndrome
 and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and Internet safe haven for Apert Syndrome
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From: Apert Mail <apertmail@USWEST.NET>
Subject: Re: (no subject)
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Alice~
I seen them on TV. it was on the View, I have been interested in them since.
thanks for your note. I am sorry I don't know this, with being new back to the
list serve, but how old is Shirley? I was wondering about using that method on
children.
thanks again
 Dawn
=========================================================================
Date: Wed, 13 Jan 1999 15:27:13 -0500
Reply-To: Information exchange and Internet safe haven for Apert Syndrome
 and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and Internet safe haven for Apert Syndrome
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From: baconsmith <bluenose@TELUSPLANET.NET>
Subject: Re: Zoey and others
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"

Hi Christina, great to hear that Zoey is once a gain a free kiddo (no
tubes). And she's doing so well. I can imagine how good it feels to have
your arms all around her again. I bet Tia will be pleased too to have her
sister up and about soon.

Christine, excellent to see your news also. I've been thinking about you
and wondering when we would get an update. Hope you continue to improve and
get great results from your tests. Rest and breathe some good air and we'll
keep you in our thoughts.

Ruth, hello and good luck to Kris on her 'coming out'. It sounds like it
will be a great celebration. I bet it is really hard for her to face more
surgeries, being a teenager. Good luck also with bringing Vivi to Houston.

Judy, re your break ins. I would be pretty un-nerved coming face to face
with someone in my house. Have you considered getting a big snarly dog?
Hope things settle down in your corner of the world; no one needs that kind
of extra stress.

EvaJessie is doing well, nicely healed except for the scars beneath her eye,
although they are still fairly new, but red and raised. She is enjoying
school and is quite the little student. Is learning to skate this year.

Pat in the rockies where we are having a wonderful mild chinook come thru.
Temps are near zero C and melting the snow.
=========================================================================
Date: Wed, 13 Jan 1999 15:11:41 -0600
Reply-To: Information exchange and Internet safe haven for Apert Syndrome
 and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and Internet safe haven for Apert Syndrome
 and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: "Allison's : GO USA, Inc" <gousa@KC.NET>
Subject: Shawn Allison United Way Activities
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"

Hi All!

As I wrote earlier in the year, Shawn Allison was featured in the United
Way campaign this year in the Kansas City Area.

Shaw has Apert syndrome and was almost 4 years old when they shot the video
and commercial. He did 17 personal appearances and was at several of the
large corporations campaigns.

He enjoys being on stage and talking with people in a microphone, or
singing songs. He has a big repertoire to choose from. One of the
favorites at the campaigns was to have people who were having a birthday to
come up by the stage, and Shawn would sing them happy birthday. I was told
that brought a lot of tears.

Shawn's biggest personal audience was over 1200, at the victory celebration
where people such as the NFL Commissioner, Paul Tagliabue was present.
They brought Shawn up front and showed a video of him singing Twinkle
Twinkle, and followed it by a special short video they made of Shawn. He
then got to come to come to the stage with two Chief's (KC Football Team)
Cheerleader's to set off the indoor fireworks and display the final
campaign contribution amount. Then he was interviewed by one of the local
TV Newscasters from our area, and Shawn thanked everyone.

The campaign has run its course and the United Way exceeded it's goal of
36.5 million dollars.

I made a video of some of the things that Shawn did, including the campaign
video, which they took to corporations to show, and the TV commercial. He
was fan of the week on the Marcus Allen show, and there are clips from a
few other things.

If anyone has the equipment to download the RealMedia file, and would like
to watch this video production, it is located at
<http://www.gousainc.com/shawn/uniteway.rm> The quality suffers a little,
but I needed to keep the file size small. Approximately 3 meg. (23 minute
of video)

If you would like to just see the commercial with a little better quality,
and have quicktime, or other AVI player, it is located at
<http://www.gousainc.com/shawn/uwcom.avi> Approximately 1.8 meg (30 second
video, good quality)

If you want to see the commercial quick, with less quality, I also put it
as <<http://www.gousainc.com/shawn/uwcom.rm> Real Media 70K (30 Second
Video, lower quality)

We enjoyed having Shawn in the spotlight in this years campaign, and
educating people about how wonderful these kids are that they usually do
not get a chance to meet.

I hope you enjoy.

Mike Allison
=========================================================================
Date: Wed, 13 Jan 1999 19:49:32 EST
Reply-To: Information exchange and Internet safe haven for Apert Syndrome
 and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and Internet safe haven for Apert Syndrome
 and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: BBarn60368@AOL.COM
Subject: Re: (no subject)
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
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Dawn,
You asked how old Shirley is. She is 5. She will be 6 in June. I guess one
thing about using them on kids is getting the child to lay still. It takes
about 10 minutes. Also, the fact that you light this thing scared Shirley to
death. We had to do it to her Dad first to show her that it did not hurt or
burn her.

Alice
=========================================================================
Date: Wed, 13 Jan 1999 20:22:48 -0600
Reply-To: Information exchange and Internet safe haven for Apert Syndrome
 and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and Internet safe haven for Apert Syndrome
 and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Judy Amerman <jamerman@UTI.COM>
Subject: Shawn Allison
MIME-Version: 1.0
Content-Type: text/plain; charset=ISO-8859-1
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to the Allisons.

I just seen the 30 second video of Shawn. That is just too sweet. He did
a great job.

I tried the longer one but I guess I don't have the right stuff on my
computer to see it or else because I am computer illiterate in many
aspects, it could be that I just did something wrong!

Update on yesterday's episode. The kid had to go in front of the judge
this morning and got a $25,000 bond. I don't know if he has been bailed
out or not.

Judy Amerman
=========================================================================
Date: Thu, 14 Jan 1999 00:47:43 +0000
Reply-To: Information exchange and Internet safe haven for Apert Syndrome
 and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and Internet safe haven for Apert Syndrome
 and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Comments: Authenticated sender is <jgibson2@POP.erols.com>
From: jgibson2@EROLS.COM
Subject: Re: What a day!
In-Reply-To: <199901130404.WAA29286@matrix.uti.com>
MIME-Version: 1.0
Content-type: text/plain; charset=US-ASCII
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Judy,
What a scare you must have had! Thank goodness the kid just left
without giving you any more problems. What do you do? Well, if
you're not allergic, you might consider a dog. We had a problem
with daytime burglaries in my neighborhood a few years ago, but the
65 lbs of German Shepherd lying beside me makes me feel pretty
secure.

There are always adult dogs available for adoption and you can skip
the puppy phase. My brother even adopted a dog that was thoroughly
obedience trained as well as housebroken.

Poor Nick, How embarrassing for him to lose his pants like
that -- and in school too.

Judy Gibson

jgibson2@erols.com
=========================================================================
Date: Wed, 13 Jan 1999 22:13:00 -0800
Reply-To: Information exchange and Internet safe haven for Apert Syndrome
 and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and Internet safe haven for Apert Syndrome
 and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: claudia salazar <pcbaas@HOME.COM>
Organization: @Home Network
Subject: Trach
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit

Hi Everyone,

Shawn is so adorable, no wonder they chose him to be the representative
for United Way. You must be very proud of him. It is amazing how
quickly they bounce back after major surgeries...

Judy,
What a horrible ordeal you are going through and to think the teenager
is your neighbor. No doubt there is major animousity abound in your
neighborhood. It is sad that the kid has made such poor choices at the
expense of your sense of security. I will pray for you and the boy and
his family.

This past week we had an ordeal with Allie and her trach. Tissue had
grown across her trachea and was forcing the trach out. Thus difficulty
in breathing. The same thing happened at the beginning of last year and
several ER trips and 3 surgeries later the problem was resolved. All
the same memories of pain surfaced again, we decided to tough it through
the night so we could see her regular ENT. I know the ER doctors would
have just forced it in without resolving the problem.
Fortunately the Dr was able to remove the tissure with out having
surgery. Talk about one brave little girl....not to say she wasnt
screaming and crying, but right after the procedure, told her she could
have any treat for being so brave. By the time we were at the ice cream
parlour, you would of never known anything was wrong. Her resilence
never ceases to amaze me.

Funny story (only in hindsight) that happened right after Xmas....My
oldest son was horsing around with brother and his cousin. They climbed
on the roof like Santa and starting calling HOHOHO. When I realized
where he was I went outside and started yelling at them to get
down...but he said he couldnt because he said he was stuck in the
chimney. I was so mad, I told his brother to leave him up there. Of
course it was late at night and my neighbors are wondering what is going
on...Needless to say he got out and later confessed to me he wasnt
really stuck...I had a feeling he wasnt..Thank goodness though they
didnt fall off the roof in the process. They really didnt think it was
so funny after all when they had a week of no TV or phone and couldnt go
anywhere. End of the world for a jr high kid. Never a dull moment at
the Salazar's.
Claudia
=========================================================================
Date: Thu, 14 Jan 1999 08:47:38 -0500
Reply-To: Information exchange and Internet safe haven for Apert Syndrome
 and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and Internet safe haven for Apert Syndrome
 and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Don Sears <dsears@SCRS.STATE.SC.US>
Subject: Re: Judy's unwelcome visitor
MIME-Version: 1.0
Content-Type: text/plain

Here's a radical idea Judy........

--------Lock your doors.---------

No charge for the security consultation.
=========================================================================
Date: Thu, 14 Jan 1999 08:13:31 -0600
Reply-To: Information exchange and Internet safe haven for Apert Syndrome
 and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and Internet safe haven for Apert Syndrome
 and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Judy Amerman <jamerman@UTI.COM>
Subject: Misc.
MIME-Version: 1.0
Content-Type: text/plain; charset=ISO-8859-1
Content-Transfer-Encoding: 7bit

HAHA Don!
HOw many people expect this in the middle of the afternoon!

In re of the dog: I thought about it but I have a 10 year old Persian cat
and a 10 year old shitshu that probably would not take to kindly to the
intrusion.

I did have a security company here yesterday to give me a price on a system
for my home but I have to wait and see what my tax man tells me in
February. He may say "You owe us!" OUCH

Cathie, no need to worry about the gun, I have decided against it for all
the reasons you mentioned. Thanks for being such a good friend to lay it
on the line for me and I love you too! ( Don, You too! Smarty pants)

The snow is finally starting to melt here but now they are talking freezing
drizzle and sleet. Will it ever end?

All I can say is Come on June. I'm almost ready. ( Got to shed a few
pounds first though!)

To the Allisons's. Is there a way to get a tape of Shawn for the vcr? I
would love to have one! He is quite the actor and just so natural!
=========================================================================
Date: Thu, 14 Jan 1999 13:11:23 -0500
Reply-To: Information exchange and Internet safe haven for Apert Syndrome
 and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and Internet safe haven for Apert Syndrome
 and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: ROBIN L HILL <CARMENRAE@PRODIGY.NET>
Subject: June!!!!!!!!!!!!!!!
MIME-Version: 1.0
Content-Type: text/plain; charset=ISO-8859-1
Content-Transfer-Encoding: 7bit

Just wanted to let everyone know that we have made our reservations at the
Crownreef for June 13 - 18. We are looking forward to meeting the Amermans
and Sears and hopefully ALOT MORE OF YOU TOO!!!!! We had to reserve the
HUGE room because we are hoping to bring my parents, too. Now the only
hard part is WAITING until June! It is so much fun to have something to
look forward to.

Robin Hill

P.S. I guess I need to start looking for a bikini for Carmen Rae; SHE will
definitely be the only one in this party wearing one! Well, unless her
father is interested!!!!!! HAHA
=========================================================================
Date: Thu, 14 Jan 1999 13:28:01 -0600
Reply-To: Information exchange and Internet safe haven for Apert Syndrome
 and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and Internet safe haven for Apert Syndrome
 and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Judy Amerman <jamerman@UTI.COM>
Subject: Re: June
MIME-Version: 1.0
Content-Type: text/plain; charset=ISO-8859-1
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Way to go to the Hill's!!!!!YEAH!!!!

I am so glad to see someone jumping on the bandwagon now. It gives us more
to look forward to. I do know of a few others that may come, but have not
yet confirmed. Congratualations to a goood and fun decision!

See you in June!

Judy, Bill and Nick
=========================================================================
Date: Thu, 14 Jan 1999 14:36:04 EST
Reply-To: Information exchange and Internet safe haven for Apert Syndrome
 and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and Internet safe haven for Apert Syndrome
 and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Nodrmat26@AOL.COM
Subject: ZOEY IS HOME!!!
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit

Zoey's Mom here~

Found out yesterday that Zoey could go home today and SHE DID!!! She's still
too weak to hold her head up or sit up, but who cares...it'lll come back with
time and love and hugs and kisses!! Thanks to everyone!!

Christina
=========================================================================
Date: Thu, 14 Jan 1999 15:53:29 +0000
Reply-To: Information exchange and Internet safe haven for Apert Syndrome
 and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and Internet safe haven for Apert Syndrome
 and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Comments: Authenticated sender is <jgibson2@POP.erols.com>
From: jgibson2@EROLS.COM
Subject: Re: ZOEY IS HOME!!!
In-Reply-To: <6691a9d4.369e4724@aol.com>
MIME-Version: 1.0
Content-type: text/plain; charset=US-ASCII
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Christina,
I'm so glad to hear that Zoey is home again!
Little people bounce back so much faster than big people. I'm sure
she'll be back to her old self almost before you know it.

Judy
Judy Gibson

jgibson2@erols.com
=========================================================================
Date: Fri, 15 Jan 1999 05:24:16 -0500
Reply-To: Information exchange and Internet safe haven for Apert Syndrome
 and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and Internet safe haven for Apert Syndrome
 and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Andrea Gartner <agartner@PEGANET.NET>
Subject: Re: Zoey home
MIME-Version: 1.0
Content-Type: text/plain; charset=ISO-8859-1
Content-Transfer-Encoding: 7bit

I'm so glad to hear Zoey's home, and doing better. Keep it up girl!

Best Wishes
-Andrea
=========================================================================
Date: Thu, 14 Jan 1999 17:45:41 EST
Reply-To: Information exchange and Internet safe haven for Apert Syndrome
 and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and Internet safe haven for Apert Syndrome
 and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: GSieb91515@AOL.COM
Subject: Re: Zoey
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit

Christina-

We are so happy to hear the good news. It sounds like Zoey is definately on
the mends and hopefully can come home soon.

Brenda
Houston
=========================================================================
Date: Thu, 14 Jan 1999 15:49:16 -0800
Reply-To: Information exchange and Internet safe haven for Apert Syndrome
 and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and Internet safe haven for Apert Syndrome
 and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Robyn Johnston <robyn@ORDATA.COM>
Subject: Re: ZOEY IS HOME!!!
In-Reply-To: <6691a9d4.369e4724@aol.com>
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"

Christina,

Glad to hear that you can take your precious little girl home. What a huge
relief it must be. You have been in our prayers often! Zoey - way to go!
You are a fighter!!!

Hugs, Robyn J.

>Found out yesterday that Zoey could go home today and SHE DID!!! She's still
>too weak to hold her head up or sit up, but who cares...it'lll come back with
>time and love and hugs and kisses!! Thanks to everyone!!
=========================================================================
Date: Thu, 14 Jan 1999 19:11:52 -0500
Reply-To: Information exchange and Internet safe haven for Apert Syndrome
 and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and Internet safe haven for Apert Syndrome
 and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: HAROLD E TYRE <HETSRT@PRODIGY.NET>
Subject: Fw: Misc
MIME-Version: 1.0
Content-Type: text/plain; charset=ISO-8859-1
Content-Transfer-Encoding: 7bit

----------
> From: HAROLD E TYRE <HETSRT@prodigy.net>
> To: APERT@LISTSERVE.AOL.COM
> Subject: Misc
> Date: Thursday, January 14, 1999 5:34 PM
>
> Carmen Rae's Grandma here, I have to agree with Don about locking the
> doors, with the way the world is unfortunately it is necessary!! We keep
> ours locked day and night even when we are home. The alarm system is
also
> a good idea. So happy to hear that Zoey is home and will get to spend
her
> birthday Mon there instead of in the hospital. Carmen Rae will be 1 year
> old on Mon the 18th (same day Zoey turns 2 yrs!) Going to her BIG party
at
> the Hill's Sat. I downloaded everything of Shawn Allison and really
> enjoyed watching him. He is a real cutie pie. Maybe next time we go to
> Kansas we will have time to meet him and family. Hope more families will
> be able to come to the beach in June. Robin, what did you mean by
needing
> the HUGH room because we are coming?? You are right about not wearing
the
> bikinis though. Everyone have a nice weekend. Sherry
>
=========================================================================
Date: Thu, 14 Jan 1999 19:30:15 -0500
Reply-To: Information exchange and Internet safe haven for Apert Syndrome
 and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and Internet safe haven for Apert Syndrome
 and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: ROBIN L HILL <CARMENRAE@PRODIGY.NET>
Subject: Re: ZOEY IS HOME!!!
MIME-Version: 1.0
Content-Type: text/plain; charset=ISO-8859-1
Content-Transfer-Encoding: 7bit

We are so glad to hear that Zoey is home. Now we can really party on the
18th knowing that Carmen Rae and Zoey will both be home for their birthday!
We will keep her in our prayers. Hope you are all in better spirits now
that your family is back together.

Robin Hill

----------
> From: Nodrmat26@AOL.COM
> To: APERT@LISTSERV.AOL.COM
> Subject: ZOEY IS HOME!!!
> Date: Thursday, January 14, 1999 2:36 PM
>
> Zoey's Mom here~
>
> Found out yesterday that Zoey could go home today and SHE DID!!! She's
still
> too weak to hold her head up or sit up, but who cares...it'lll come back
with
> time and love and hugs and kisses!! Thanks to everyone!!
>
> Christina
=========================================================================
Date: Thu, 14 Jan 1999 21:50:06 -0500
Reply-To: Information exchange and Internet safe haven for Apert Syndrome
 and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and Internet safe haven for Apert Syndrome
 and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Jack and Raquel <jara1@BELLSOUTH.NET>
Subject: Re: Update
MIME-Version: 1.0
Content-Type: multipart/alternative;
 boundary="------------38B58006A1A8ADF6E412996E"

--------------38B58006A1A8ADF6E412996E
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Andrea Gartner wrote:

> I've also decide to have craniofacial surgery done. My parents and I saw
> Dr. Anthoney Wolfe on Friday,..............

> I'll be having the surgery on May 13. Please keep
> me in your prayers during that time. I think some of you had seen or had
> surgereis with Dr. Wolfe? Were you happy with him and the results? Any
> feedback would be greatly appreciated.

Dear Andrea,

First, Happy Birthday!

Second, Dr. Anthony Wolfe is Nicole's doctor and we are very pleased with
him. She had her 1st cranial advancement done last July 16 and he did an great
job. We were told that Dr. Wolfe is one of the best in his field. Nicole's
next surgery with Dr. Wolfe is not until she is about 4 or 5 years old (she is
currently 15 months) so we have a little while to wait.

On day my wife and I we shopping in Publix (grocery store) and a man confronted
us about Nicole. He asked us who was her surgeon. My first response was do
you know what she has? His response was Aperts. He went on to say that he was
part of a Cranial facial team in Michigan and knew of Dr. Wolfe. This doctor
said that they were not as aggressive as Dr. Wolfe. I think that this is why
we like him so much, because he is very aggressive in doing what he can in
order to help the patient. This means a lot to us.

Pleeeeease, let us know the next time you are going to visit Dr. Wolfe. We
would very much like to meet with you and your family. If you would not mind,
we would love to visit you at the hospital. We would like for you to meet
Nicki.

Please call us when you are in town. Again, good luck and keep in touch.

Jack & Raquel Miller
954/ 384-8041

--------------38B58006A1A8ADF6E412996E
Content-Type: text/html; charset=us-ascii
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<HTML>

Andrea Gartner wrote:
<BLOCKQUOTE TYPE=CITE>I've also decide to have craniofacial surgery done. 
My parents and I saw
 Dr. Anthoney Wolfe on Friday,..............</BLOCKQUOTE>

<BLOCKQUOTE TYPE=CITE> I'll be having the surgery on May 13. 
Please keep
 me in your prayers during that time.  I think some of you had
seen or had
 surgereis with Dr. Wolfe?  Were you happy with him and
the results?  Any
 feedback would be greatly appreciated.</BLOCKQUOTE>
Dear Andrea,

First, Happy Birthday!

Second,  Dr. Anthony Wolfe is Nicole's doctor and we are very pleased
with him.  She had her 1st cranial advancement done last July 16 and
he did an great job.  We were told that Dr. Wolfe is one of the best
in his field.  Nicole's next surgery with Dr. Wolfe is not until she
is about 4 or 5 years old (she is currently 15 months) so we have a little
while to wait.

On day my wife and I we shopping in Publix (grocery store) and a man
confronted us about Nicole.  He asked us who was her surgeon. 
My first response was do you know what she has?  His response was
Aperts.  He went on to say that he was part of a Cranial facial team
in Michigan and knew of Dr. Wolfe.  This doctor said that they were
not as aggressive as Dr. Wolfe.  I think that this is why we like
him so much, because he is very aggressive in doing what he can in order
to help the patient.  This means a lot to us.

Pleeeeease, let us know the next time you are going to visit Dr. Wolfe. 
We would very much like to meet with you and your family.  If you
would not mind, we would love to visit you at the hospital.  We would
like for you to meet Nicki.

Please call us when you are in town.  Again, good luck and keep
in touch.

Jack & Raquel Miller
 954/ 384-8041</HTML>

--------------38B58006A1A8ADF6E412996E--
=========================================================================
Date: Thu, 14 Jan 1999 22:04:00 -0500
Reply-To: Information exchange and Internet safe haven for Apert Syndrome
 and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and Internet safe haven for Apert Syndrome
 and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Jack and Raquel <jara1@BELLSOUTH.NET>
Subject: Re: Judy's unwelcome visitor
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit

Don Sears wrote:

> Here's a radical idea Judy........
>
> --------Lock your doors.---------
>
> No charge for the security consultation.

We were thinking the same thing. For a while there we thought that he
had a key to your house.

We live in a good neighborhood also but lock the door even when we are
home (mid day or night).

Raquel Miller