log9907c

=========================================================================
Date:         Thu, 15 Jul 1999 02:15:50 EDT
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:         Lisa Guyette <LAM1126@AOL.COM>
Subject:      Overload
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit

Hi everyone,

Just curious has anyone else gone through this? Today I got kinda upset with
my mom (who didn't deserve it). She called with some things she had been
thinking about Samantha's health. She said her and the other grandmother
were discussing it. I've never been able to verbablize it before, but what
I was feeling and said so, was that I feel we don't have any privacy with
Samantha. I feel that because of her having Aperts and everyone wanting to
know what's going on day to day with her (out of concern), that I'm obligated
to report to everyone everything.

I also get irritated sometimes when things work out for her (new head shape
and outgoing personality) and someone will say "See I told you so," because I
let them know what could happen in worse case senario. It makes me feel like
I want the worse for my child. This started with everyone just saying she
needed a little plastic surgery and me bringing them to reality of what was
actually in our future.

Most days I love that people care. But just sometimes I want to have a
non-Apert baby day and just enjoy the regular baby things. And know that no
one else is worried about her on that day.

Has anyone else ever felt this way?

Love, Lisa Guyette
=========================================================================
Date:         Thu, 15 Jul 1999 02:29:56 EDT
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:         Lisa Guyette <LAM1126@AOL.COM>
Subject:      Loose ends
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit

Hi everyone,

I thought I'd fll you in on some things I wrote about last week.

I wrote the case Manager at Children's saying that I felt strange that our
plastic surgeon turned out case over to hand specialists. Well the plastic
surgeon called and couldn't of been sweeter. He said he did it because we
live far away and didn't want us to have to see two many doctors since they
both work different days. He said that he wasn't thinking that emotionally
it would bother us and he should of called us and discussed first. He said
we can do what ever we choose and we choose to go back to the way it was
originally set up. We meet with him and the team on July 29th.

Took Samantha to eye doctor and she is extremely far sighted. We had her
fitted for glasses. He said on a scale from one to ten, ten being the worse,
a two would need glasses and she is an eight in one eye and a nine in the
other. He put lense over my eyes so I could get an idea of what she sees. It
breaks my heart that all this time she has only seen us and every thing we've
shown her as a colorful blur. He showed us how she doesn't move her eye
balls when tracking she moves her whole head. And when she really wants to
see something she puts her head down. She probably sees double too.

Also I mailed my last post before I added the above part. So no one thinks
I'm uncaring to my family, I love there love and support. Just today I
needed to just enjoy my daughter normally. There were no therapies or doctor
visits and I got the family call about theories on her eyesight and asking me
if she could be deaf too. It just was too much.

I'm kinda excited though about having Samantha see us clearly for the first
time. Her youngest brother (l5) is here for a few weeks and she will be able
to see him in her glasses before he leaves. The doctor said that we
probably will see her start to do a lot of things like crawling and stuff
that she had no desire to do before.

Love, Lisa Guyette
=========================================================================
Date:         Thu, 15 Jul 1999 23:10:15 +1200
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:         Howard & Ann <howrdnan@IHUG.CO.NZ>
Subject:      Re: Ear infections
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"

Hi Carol

Amy also has had problems with one ear since her grommets were inserted. He took her off the antibiotic drops and just used a plain steroid drops.

They aren't causing problems at the moment, but we are back to swimming lessons now so I expect it will start again soon.

Cheers
Ann
NZ
=========================================================================
Date:         Thu, 15 Jul 1999 23:10:25 +1200
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:         Howard & Ann <howrdnan@IHUG.CO.NZ>
Subject:      Re: Overload
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"

Hi Lisa

>I've never been able to verbablize it before, but what
>I was feeling and said so, was that I feel we don't have any privacy with
>Samantha.

..People do want to know but there is a difference between idle curiosity and real concern. Don't bother with the first lot, just tell them things are going to be fine/are fine and leave it at that. If you snap at the ones who are closest they will probably just put it down to "poor Lisa is having a bad day because of what she has to deal with", and carry on as if nothing happened.

..There is also the very-protective-mother feeling you will have because your little lady needs you so much at this stage. Most mothers are able to protect their children from life in these early years - there is an area of life for our children in which we can't protect them, which can create some significant level of anxiety, angst and ambivalence (think about that last one!).

..Our children look different - they don't just get lost in the crowd, so you probably feel you are on show. Do you feel slightly aggressive when out in public?

..There are the issues of loss of control due to our dependance on surgeons, therapists, etc. - also the issues of "who knows best" (and good grief it can't be us!).

..There is the issue of denial by those who tell you not to worry and things will turn out for the best (just let them be in your shoes for a day!).

..Linked with the last is the superiority exhibited by those who say "I told you so" when in fact they know very little about the reality of your situation and have no understanding of it.

..and at the risk of upsetting some people, this also ties in with the "God knows best/God will look after her" approach. Responses go along the lines of "I wish She had asked me first" or "that's all very well, but I am the one who has to do all the work".

.."A little plastic surgery" is like saying your car just needs a tune-up. This is YOUR BABY for goodness sake!!

Lisa, it sounds to me like you are in a space that is perfectly normal for someone in your situation. Maybe a bit of depression, guilt, anxiety, worry, and how about a little post-traumatic stress disorder thrown in for good measure. You sound fine to me.

If you were someone else, what advice would you give to a friend who shared with you the things you have shared with us?

Be assured it does get easier and it does get better, but some days can be pretty tough going.

Hugs
Ann
NZ
=========================================================================
Date:         Thu, 15 Jul 1999 23:10:27 +1200
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:         Howard & Ann <howrdnan@IHUG.CO.NZ>
Subject:      Re: Loose ends
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"

At 02:29 AM 15/07/99 EDT, you wrote:

>He said that he wasn't thinking that emotionally
>it would bother us and he should of called us and discussed first.

Aren't they just soooo amazing!! When are they going to stop thinking of our children as Cases and start seeing them as babies/children with parents and families that have to reorganise their lives to fit into Their schedule - and for goodness sake, how could they possibly think we could be emotional about all this!!

I think they disconnect the Reality link when they enter med school.

Okay, I'm a bit cynical tonight.
Goodnight
Ann
NZ
=========================================================================
Date:         Thu, 15 Jul 1999 09:36:04 EDT
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:         NephiRose@AOL.COM
Subject:      Re: Loose ends
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit

Lisa's comments struck a chord. A while back I was doing everything I can
for Sarah, therapy twice a week...back and forth to various doctors...try to
anticipate and meet Sarah's every need. It took me a looong time to sit back
and just enjoy Sarah as a baby without worrying if I was doing enough. With
my other children, I'd wake up in the middle of the night to their cries and
I'd spend the night cuddling. With Sarah, I'd wake up paranoid. ;) (Not
anymore, though)

Incidentally, Sarah is also extremely far sighted. I've dealt with this
issue for about a year with some frustration because I could not get her to
wear glasses. Not having much of a nose and with her ears being so far down
on her head, it was literally impossible to keep them on. Finally I made a
pretty lacey head band that ties in back that enables the glasses to stay on
all day without bothering her. It works!

And yes, she is hard of hearing also. Of course,, this also requires more
test along with sleep study test, physical therapy yada yada. The list will
never really end and people will never really quite understand the "stress'.
It's not so much as the baby is a lot of trouble, but wondering if I'm doing
enough. It is NEVER just a little plastic surgery.

Finally, I was able to acknowledge that others may not see Sarah as I do.
They show their love the way they can. And inspite of all the worries, I now
can really enjoy each milestone Sarah makes. I think someone said on this
list serve that as they grow older the testing, therapies, and surgeries
become less and less. It's true.
Sarah is almost 3 years old. Not quite talking, but is signing quite a bit.
She seems so relaxed and friendly. In spite of the surgeries, she's happy.
And to me, at this point, that is all that matters.

Hang in there. It does get better. :) Maybe it is a mother thing..I don't
know. Sometimes when I get stressed out and start getting weepy, my husband
will look at me and wonder "what's going on with her!".

Belinda
=========================================================================
Date:         Thu, 15 Jul 1999 12:23:50 +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: Overload
In-Reply-To: <199907151110.XAA11987@smtp1.ihug.co.nz>
MIME-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7BIT

> .."A little plastic surgery" is like saying your car just needs a tune-up. This is YOUR BABY for
> goodness sake!!

"A little plastic surgery indeed!" I'm here because as a NICU
nurse I want to learn more about Apert so I won't say things like
that to people. MY oldest needed a little plastic surgery -- really
little, an extra fold of skin on his ear. I was NUTS! Surgery is
scary. Major surgery must be terrifying.

I think people say stupid things because they don't like to see
folks upset and haven't learned yet to say NOTHING or better, to say
"what can I do for you?"

Judy
=========================================================================
Date:         Thu, 15 Jul 1999 12:57:47 -0700
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:         "Wittenburg, Mark" <Mark_Wittenburg@TEMPE.GOV>
Subject:      Re: Overload
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"

Hi Lisa,

We don't write much, but we lurk, and your message struck a cord.

You are not alone. Although I appreciate the support from friends and
family, there are days when I wish things were more private. We have two
older children as well and I try to be careful discussing Jackie's latest
news in front of them too much for fear of breeding resentment or jealousy.
But on good days I think how lucky we are to have so many people who do care
and accept her for what she is, because there are far too many out there who
won't.

So, I am glad to know I am not alone in my craving for a more private
existence. My mother thinks she knows everything about everything so when
she says "I told ya so", and she does it often, I tell myself that's her way
of having control over something she has no control over. Sometimes it
works, sometimes it doesn't. In the end we all do what's best for our kids,
and that's all we can do.

Good luck, and the next time I beat myself up for wishing for an un-Apert
day I will think of you.

Jackie's mom.

Hi everyone,

Just curious has anyone else gone through this? Today I got kinda upset
with
my mom (who didn't deserve it). She called with some things she had been
thinking about Samantha's health. She said her and the other grandmother
were discussing it. I've never been able to verbablize it before, but what
I was feeling and said so, was that I feel we don't have any privacy with
Samantha. I feel that because of her having Aperts and everyone wanting to
know what's going on day to day with her (out of concern), that I'm
obligated
to report to everyone everything.

I also get irritated sometimes when things work out for her (new head shape
and outgoing personality) and someone will say "See I told you so," because
I
let them know what could happen in worse case senario. It makes me feel
like
I want the worse for my child. This started with everyone just saying she
needed a little plastic surgery and me bringing them to reality of what was
actually in our future.

Most days I love that people care. But just sometimes I want to have a
non-Apert baby day and just enjoy the regular baby things. And know that no
one else is worried about her on that day.

Has anyone else ever felt this way?

Love, Lisa Guyette
=========================================================================
Date:         Thu, 15 Jul 1999 19:01:24 EDT
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:         Marilyn Williams <Mbwill43@AOL.COM>
Subject:      Re: Loose ends
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit

Dear Lisa, glad you got the eye problem solved, my granddaughter that is 6
yrs old has to wear glasses for nearsightedness also. she was crossed eyed
and had to have them operated on when she was about 18 mos. she is doing
great. Hope samantha is getting along good. we love these babies on the list.
take care marilyn
=========================================================================
Date:         Thu, 15 Jul 1999 20:28:06 EDT
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: Loose ends
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit

Lisa:
I remember thinking one time, in exasperation, I wish I could just have a
week with Shirley with no ear infections, no surgery, no casts, no eye drops,
no glasses, etc., etc., etc. I longed to know what she was really like
without the agitation, pain, and aggravation of all the mess she was going
through. Shirley is 6 now and please know that the day does come when your
little girl will be able to just act like a normal little girl who plays with
Barbies, little ponies, or whatever. It does get better, I promise.

Shirley, also is very farsighted. At 7 months, the eye doctor prescribed
glasses. Shirley didn't want anything to do with them. They told me that at
that age she knew it was different with her glasses, but not necessarily that
it was better. We had a terrible time with eye doctors also. We went
through 2 doctors and probably 5 different prescriptions in the first year.
It was so frustrating. Shirley is very strong willed and she really had to
decide, herself, that she was going to wear the glasses before she did. I
can honestly say that we tried everything, including atropine drops and arm
restraints, and nothing worked. We finally gave up, backed off, and at about
2 years old Shirley finally put her glasses on and has been wearing them ever
since. It was a very frustrating time for us. If you have the same type
trouble please feel free to cry on my shoulder.....been there, done that, and
therefore would love to offer my support. I have also heard of one of our
apert kids who put her glasses on the first time and kept them on from then
on...no problem.

Much love and keep us posted on how it goes,
Alice in Orlando, FL.
=========================================================================
Date:         Thu, 15 Jul 1999 21:44:19 EDT
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:         KTGrace1@AOL.COM
Subject:      TURNING FOUR
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit

Hello again, it's been a long time since writing. I am Katey Graces' Granny.
It is difficult for her mom or dad to write since I have the computer. They
get all the news and are receiving lots of pictures. Katey keeps them in her
own photo album that says on the front....KEEP SMILING. She is very
possessive of them and when she receives a new pictures insists that she show
it to you and doesn't like anyone to take her album without asking. She
calls all the children her special friends. Come the 27th of August, she
will be turning 4. I have been asked by her mom to put the work out about
pre-K four and get imput from all the veterans out there. Will it help her
to get a jump on her writing skills and what about the socialization? She is
going through a shy stage right now. Is this normal or what for this age.
Anyway, what success has anyone had with pre-K-4............Thanks in advance
for your input......
        Graneebear
=========================================================================
Date:         Thu, 15 Jul 1999 22:08:03 EDT
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:         Shirley Tanner <TANRANCH@AOL.COM>
Subject:      Fwd: [Fwd: WHY PARENTS GET GRAY]
MIME-Version: 1.0
Content-Type: multipart/mixed; boundary="part1_8f7cf528.24bfee03_boundary"

--part1_8f7cf528.24bfee03_boundary
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit

Thought everyone would get a kick out of this!!
Shirley Tanner
Mom of Collin, 7 yrs w/Aperts

--part1_8f7cf528.24bfee03_boundary
Content-Type: message/rfc822
Content-Disposition: inline

Return-path: KELEE257@aol.com
From: KELEE257@aol.com
Full-name: KELEE257
Message-ID: <8f7cf528.24b4f4a2@aol.com>
Date: Wed, 7 Jul 1999 14:21:22 EDT
Subject: Fwd: [Fwd: WHY PARENTS GET GRAY]
To: kdl94@juno.com
CC: TANRANCH@aol.com, sherri0712@yahoo.com, SUNNIDAZ4U@aol.com
MIME-Version: 1.0
Content-Type: multipart/mixed; boundary="part2_8f7cf528.24b4f4a2_boundary"
X-Mailer: AOL 4.0 for Windows 95 sub 4

--part2_8f7cf528.24b4f4a2_boundary
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit

--part2_8f7cf528.24b4f4a2_boundary
Content-Type: message/rfc822
Content-Disposition: inline

Return-path: Mimibglee@aol.com
From: Mimibglee@aol.com
Full-name: Mimibglee
Message-ID: <8f7cf528.24ac0f9d@aol.com>
Date: Wed, 30 Jun 1999 20:26:05 EDT
Subject: Fwd: [Fwd: WHY PARENTS GET GRAY]
To: dscpumpco@ala.net, WANT32WIN@aol.com, ulethah@webtv.net,
RICHARDLSR@aol.com, KELEE257@aol.com, croppie@bellsouth.net,
fyrechild1@yahoo.com
MIME-Version: 1.0
Content-Type: multipart/mixed; boundary="part3_8f7cf528.24ac0f9d_boundary"
X-Mailer: AOL 4.0 for Windows 95 sub 214

--part3_8f7cf528.24ac0f9d_boundary
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit

--part3_8f7cf528.24ac0f9d_boundary
Content-Type: message/rfc822
Content-Disposition: inline

Return-path: TWOBIRDZ@aol.com
From: TWOBIRDZ@aol.com
Full-name: TWOBIRDZ
Message-ID: <8f7cf528.24a96722@aol.com>
Date: Mon, 28 Jun 1999 20:02:42 EDT
Subject: Fwd: [Fwd: WHY PARENTS GET GRAY]
To: kenshell@fuse.net
CC: Mimibglee@aol.com
MIME-Version: 1.0
Content-Type: multipart/mixed; boundary="part4_8f7cf528.24a96722_boundary"
X-Mailer: AOL 4.0 for Windows 95 sub 10

--part4_8f7cf528.24a96722_boundary
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit

--part4_8f7cf528.24a96722_boundary
Content-Type: message/rfc822
Content-Disposition: inline

Return-Path: <BBS@zebra.net>
Received: from rly-yc02.mx.aol.com (rly-yc02.mail.aol.com [172.18.149.34])
        by air-yc03.mail.aol.com (v59.51) with SMTP; Mon, 28 Jun 1999
        17:58:12 -0400
Received: from smtp.zebra.net (smtp.zebra.net [208.5.19.14]) by
        rly-yc02.mx.aol.com (vx) with SMTP; Mon, 28 Jun 1999 17:57:59 -0400
Received: from ppp033-pool06a.dtmob.zebra.net ([209.12.153.160]
        helo=zebra.net)
        by smtp.zebra.net with esmtp (Custom zebra.net smtp server (Debian))
        for TWOBIRDZ@aol.com
        id 10ylo1-0001tc-00; Mon, 28 Jun 1999 19:31:22 -0500
Message-ID: <3777F05F.C2D4CBDA@zebra.net>
Date: Mon, 28 Jun 1999 16:59:59 -0500
From: BBS <BBS@zebra.net>
X-Mailer: Mozilla 4.05 [en] (Win95; I)
MIME-Version: 1.0
To: TWOBIRDZ@aol.com
Subject: [Fwd: WHY PARENTS GET GRAY]
Content-Type: multipart/mixed;
        boundary="------------73AC63DDC9DD877213CD633C"

--------------73AC63DDC9DD877213CD633C
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit

--------------------
Return-Path: <vpalmer@att.com>
Received: from ns3.zebra.net ([209.12.6.2]) by mail.zebra.net
          (Post.Office MTA v3.5.2 release 221 ID# 0-12345L500S10000V35)
          with ESMTP id net for <bbs@zebra.net>;
          Mon, 28 Jun 1999 09:17:16 -0500
Received: from ckmso1.proxy.att.com (ckmso1.att.com [12.20.58.69])
        by ns3.zebra.net (8.8.8+Sun/8.8.6) with ESMTP id JAA27761
        for <bbs@zebra.net>; Mon, 28 Jun 1999 09:19:15 -0500 (CDT)
Received: from mo3980r1.ems.att.com ([135.38.12.14])
        by ckmso1.proxy.att.com (AT&T IPNS/MS-2.2) with ESMTP id KAA21352;
        Mon, 28 Jun 1999 10:19:52 -0400 (EDT)
Received: from gab200bh1.ems.att.com by mo3980r1.ems.att.com (8.8.8+Sun/ATTEMS-1.4.1 sol2)
        id KAA28092; Mon, 28 Jun 1999 10:19:23 -0400 (EDT)
Received: by gab200bh1.ems.att.com with Internet Mail Service (5.5.2448.0)
        id <NTZZ8NBT>; Mon, 28 Jun 1999 10:19:51 -0400
Message-ID: <5BF95BAC4047D211A6460000C0FE7300291EEE@gad660po01.ems.att.com>
From: "Palmer, Vivian E, NCIO" <vpalmer@att.com>
To: "'Belin, Betty P'" <bpbelin@aol.com>, "'Palmer, Tyki'"
         <tpbtfla@aol.com>,
        "'Seales, Bonnie'" <bbs@zebra.net>,
        "'Steele, Chanda P.'" <cpsteele@gapac.com>,
        "'Stephens, Jean S.'"
         <tjs0822@aol.com>
Subject:   WHY PARENTS GET GRAY
Date: Mon, 28 Jun 1999 10:19:45 -0400
MIME-Version: 1.0
X-Mailer: Internet Mail Service (5.5.2448.0)
Content-Type: text/plain

> > Why parents get gray:
> >
> > The boss of a big company needed to call one of his employees about an
> > urgent problem with one of the main computers. He dialed the employees
> > home phone number and was greeted with a child's whispered, "Hello?"
> >
> > Feeling put out at the inconvenience of having to talk to a youngster
> > the boss asked, Is your Daddy home?
> >
> > "Yes," whispered the small voice.
> >
> > "May I talk with him?" the man asked.
> >
> > To the surprise of the boss, the small voice whispered, "No."
> >
> > Wanting to talk with an adult, the boss asked, "Is your Mommy there?"
> >
> > "Yes," came the answer.
> >
> > "May I talk with her?"
> >
> > Again the small voice whispered, "no."
> >
> > Knowing that it was not likely that a young child would be left home
> > alone, the boss decided he would just leave a message with the person
> > who should be there watching over the child. "Is there any one there
> > besides you?" the boss asked the child.
> >
> > "Yes" whispered the child, "A policeman".
> >
> > Wondering what a cop would be doing at his employee's home, the boss
> > asked "May I speak with the policeman"?
> >
> > "No, he's busy", whispered the child.
> >
> > "Busy doing what?, asked The boss.
> >
> > "Talking to Daddy and Mommy and the Fireman", came the whispered
> answer.
> >
> > Growing concerned and even worried as he heard what sounded like a
> > helicopter through the ear piece on the phone the boss asked, "What is
> > that noise?"
> >
> > "A hello-copper", answered the whispering voice.
> >
> > "What is going on there?", asked the boss, now Alarmed.
> >
> > In an awed whispering voice the child answered, "The search team just
> > landed the hello-copper"
> >
> > Alarmed, concerned and more than just a little frustrated the boss
> > asked, "Why are they there?"
> >
> > Still whispering, the young voice replied along with a muffled giggle:
> >
> > "They're looking for me!"
>
>

--------------73AC63DDC9DD877213CD633C--

--part4_8f7cf528.24a96722_boundary--

--part3_8f7cf528.24ac0f9d_boundary--

--part2_8f7cf528.24b4f4a2_boundary--

--part1_8f7cf528.24bfee03_boundary--
=========================================================================
Date:         Fri, 16 Jul 1999 00:19:37 EDT
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:         Karin Pittman <KMea854818@AOL.COM>
Subject:      Re: seisures
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit

Stephanie,
We flew to Dallas to meet Dr. Fearon and another dr at dr salyer's office.
Dr. Salyer was too busy to see us. So, we met with Dr. Hubli in Dr. Salyer's
office. We did not like Dr. Hubli at all. He treated Mason like an object
instead of a little boy. Dr. Fearon is who we decided to go with for his
first cranial surgery. Dr. Fearon also does hands, but I don't know if he's
a board certified hand surgeon--that's important. We have a hand surgeon
here In Denver we're going to use--Dr. Scott. We like him a lot and met
another couple who had good results from him with their daughter.

Dr. Fearon has a good reputation and a good bedside manner. He called us
personally to check up on Mason (my son) to see how he was doing.

I also checked with a Dr. Upton who has a lot of experience with Aperts
kids' hands. He is in boston. I heard that he is a little on the old side,
but he's probably a fine surgeon.

I hope this helps. Finding the right doctors you feel comfortable with is
the hardest thing, but the most important.

Sincerely,
karin meadows-pittman, mom of the adorable & charming Mason Pittman
=========================================================================
Date:         Fri, 16 Jul 1999 23:27:55 +1200
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:         Howard & Ann <howrdnan@IHUG.CO.NZ>
Subject:      Re: Loose ends
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"

>I can honestly say that we tried everything, including atropine drops and arm
>restraints, and nothing worked. We finally gave up, backed off, and at about
>2 years old Shirley finally put her glasses on and has been wearing them ever
>since.

As parents we have issues of loss of control once our children are "in the system", but our children also have major loss of control over their own lives. The treatment they receive in hospitals would be classified as abuse in any other environment - No wonder every now and then they say "No". And I see this as a very healthy sign for their personal development.

The difficulty is when their saying "No" cannot be accepted, as with operations, dressing changes, etc. I think we need to allow them the right to refuse when it is not a critical issue. When it is critical, let them know that they are heard but "this is something that just has to be done".

And I was a mother who swore Barbie would not enter our house...the dog has a Barbie ball, Amy has a Barbie duvet and pillowslip, and numerous Barbies now occupy our house with their car, furniture, clothes, etc. The truck I bought her for her first birthday sits in the outside cupboard and only comes out when the sandpit is opened.

Ann
NZ
=========================================================================
Date:         Fri, 16 Jul 1999 09:19:25 -0400
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: Needing information
Comments: To: interquetzal <interquetzal@mail2.guate.net>
MIME-Version: 1.0
Content-Type: text/plain

Hello Julio -

I am forwarding your letter to our wonderful family of listserv
subscribers as a way of introducing you to them. They will all have
their own opinions and answers to your questions! Personally, I think
we're all part of a very exclusive club. Mostly our kids have normal
lives - it's us parents who make ourselves suffer, worrying about the
next surgery, and what people will think about our kids, and things like
that. But our kids are remarkably normal and as you'll see, grow up to
be wonderful adults with great attitudes.

In my opinion, the first days are the hardest, and we're all here to
help you every step of the way. It is normal to feel sadness at this
point. Let yourself grieve for the "normal" child that you expected but
did not have, and then embrace the special little one that was sent to
you. Only special parents are given special kids.

We just recently came in contact with an Apert site that is completely
in Spanish. Here is the address:

http://www.usuarios.intercom.es/apert/

Hoping to hear from you soon -

Don

-----Original Message-----
From: interquetzal [mailto:interquetzal@mail2.guate.net]
Sent: Thursday, July 15, 1999 6:51 PM
To: CatNDon@apert.org
Subject: Needing information

Hello! my name is Julio Fuentes, I live in Guatemala, and recently my
wife
gave birth to a baby girl with Apert Syndrome.

We are new to all of this, so I would really appreciate any information
that I could get about the syndrome. If you could also please let me
know
what kind of life my baby girl is going to have, is it going to be
difficult for her? what is the life cycle?

If you could please send me the information requested to my above email
and
also put my name as a subscriber on your list.

Thanks in advance and I hope to hear from you soon.

Sincerely,

Julio Fuentes
P.D. I also would like to know if there are any Spanish subscribers. My
wife doesn't speak English at all, and my translation wouldn't be
accurate
for her to understand the information that I will be getting. THANK YOU!
=========================================================================
Date:         Fri, 16 Jul 1999 10:33:39 -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:         baconsmith <bluenose@TELUSPLANET.NET>
Subject:      Re: Loose ends
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"

Ann, I couldn't agree with you more. I will back down on some issues
because there are so many times that Evajessie cannot say no. And I've had
that thought too, about the abuse. I sometimes, in my darkest moments think
this is some kind of horrible abuse in some kind of surreal existence.
Interesting that you have that thought, too.

EvaJessie is also very far sighted +4 in one and +6 in the other eye. She
has worn glasses since she was 7 months old and at first didn't like them,
but after a very short time, wore them all the time. I think she understood
that they made it better to look at things. She received a little musical
toy that Christmas that moved and sang, and I made a point to bring things
out to show her when I first put her glasses on her. So she could see that
it was clearer. That was also our reading time so she could look at the
pictures.

AT about 18 months, she was really cute. She would toddle over to where the
kitchen towel was and sort of moosh her glasses in the towel -- because she
had seen us cleaning them that was.

Good luck with Samantha and her glasses, Lisa. It will work out just fine.

Pat
>As parents we have issues of loss of control once our children are "in the
system", but our children also have major loss of control over their own
lives. The treatment they receive in hospitals would be classified as abuse
in any other environment - No wonder every now and then they say "No". And
I see this as a very healthy sign for their personal development.
>
>The difficulty is when their saying "No" cannot be accepted, as with
operations, dressing changes, etc. I think we need to allow them the right
to refuse when it is not a critical issue. When it is critical, let them
know that they are heard but "this is something that just has to be done".
>
>And I was a mother who swore Barbie would not enter our house...the dog has
a Barbie ball, Amy has a Barbie duvet and pillowslip, and numerous Barbies
now occupy our house with their car, furniture, clothes, etc. The truck I
bought her for her first birthday sits in the outside cupboard and only
comes out when the sandpit is opened.
>
>Ann
>NZ
>
=========================================================================
Date:         Fri, 16 Jul 1999 17:44:06 EDT
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: Loose ends
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit

Ann:
I think you hit the nail on the head. Shirley not wearing her glasses, I
feel, was completely about control. Like I said before she is very strong
willed and it was like her will power was in full force about the glasses. I
honestly think she had had enough. Half the time in the doctor's offices she
would cry and fight, not because she was being hurt, but because she was
being controlled or held down. I thank God though that she is like she is.
A strong will is very important for our kids, I feel.

You also hit the nail on the head about abuse. As a matter of fact, that is
exactly what I told my husband the first and only time we tried the arm
restraints. I told him, "If a doctor had not prescribed these, we would be
arrested for child abuse." I was so scared not to try everything, though,
because Shirley had strabismus and the doctor kept telling me that if she
didn't use both eyes that her brain would finally just start ignoring the
weaker eye and it would eventually just wander.

While I'm on the subject ... don't you just love it when the doctors and
nurses ask you to hold your child down? I finally started telling them that
I didn't do hold downs because I am the hero Mommy that moves in, after they
are all done, to kiss it and make it all better. I hated the look my
precious baby would get in her eyes when she looked into mine, while I was
helping all the strangers hold her down.

Love you all,
Alice in Orlando, FL.
=========================================================================
Date:         Fri, 16 Jul 1999 16:57:47 -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
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Judy Amerman <jamerman@UTI.COM>
Subject:      I need your input!!
MIME-Version: 1.0
Content-Type: multipart/alternative;
              boundary="----=_NextPart_000_0005_01BECFAC.55735960"

This is a multi-part message in MIME format.

------=_NextPart_000_0005_01BECFAC.55735960
Content-Type: text/plain;
charset="iso-8859-1"
Content-Transfer-Encoding: quoted-printable

HI gang! =20

As I was driving home today from Nick's orthodonist appt. I made a =
decision! but i am going to need help from each and everyone of you.

Some months back, Nick's dr. had written a letter to my insurance =
sompany, Great West, explaining to them why his medical should cover =
his orthodonist work. He made it plain that Apert Syndrome patients =
always have teeth and palate problems relating to the syndrome. =
Apparently his letter was not good enough for them. Yes, I agree that =
it IS orthodonics but it is more than likely caused by the syndrome.

Chances are, if he did not have aperts, he may or may not have to have =
all the orthodonic work done. that is something we will never know.

Just to give you an example of what sort of cost this is, he has started =
the first phase of his orthodontal work which is for the upper and lower =
palate expanions to the tune of $1950.00. this is just for the first =
phase and does not include the braces for down the road. The only time =
they WILL pay is later down the road when he has his midface and the =
orthodonist is working with the plastic surgeon in a hospital =
atmosphere.
Just so you know, we have a $1000 lifetime cap on orthodonics.

I know that there are several more of you out there that will be facing =
this if you haven't already.

anyway, the reason for this letter is because I have decided to appeal =
their earlier decision. but I need letters from all of you, so I can =
forward the letters to the insurance company to make my case stronger. I =
just need a letter from you stating why orthodonics with apert's should =
be covered by medical. As the saying goes, there is strength in =
numbers.

If you will or can send a letter, please sign your name and include your =
address. if you don't mind, you can include your phone number also. You =
can either send it to the list or to me privately.

I KNOW that sometimes appeals can be won. It IS a time consuming =
process, the last appeal I had with an insurance company took six =
months. That one was with Aetna. And I won. To make it short, they =
paid for all his therapy's at Easter Seal for a year and a half. Then =
all of a sudden I was contacted and they said they could not pay for =
them any longer because it was by mistate that they had been paying to =
begin with. Well, i did fight them and won. and they continued to cover =
Easter Seal until Nick was three and then he got his therapy's though =
the school system.

Thank you in advance,

Judy
jamerman@uti.com

------=_NextPart_000_0005_01BECFAC.55735960
Content-Type: text/html;
charset="iso-8859-1"
Content-Transfer-Encoding: quoted-printable

<!DOCTYPE HTML PUBLIC "-//W3C//DTD HTML 4.0 Transitional//EN">
<HTML><HEAD>
<META content=3D"text/html; charset=3Diso-8859-1" =
http-equiv=3DContent-Type>
<META content=3D"MSHTML 5.00.2014.210" name=3DGENERATOR>
<STYLE></STYLE>
</HEAD>
<BODY bgColor=3D#ffffff>
<DIV><FONT face=3DArial size=3D2>HI gang!  </FONT></DIV>
<DIV> </DIV>
<DIV><FONT face=3DArial size=3D2>As I was driving home today from Nick's =
orthodonist=20
appt.  I made a decision!  but i am going to need help from =
each and=20
everyone of you.</FONT></DIV>
<DIV> </DIV>
<DIV><FONT face=3DArial size=3D2>Some months back,  Nick's dr. had =
written a=20
letter to my insurance sompany, Great West,  explaining to them why =
his=20
medical should cover his orthodonist work.  He made it plain that =
Apert=20
Syndrome patients always have teeth and palate problems relating to the=20
syndrome.  Apparently his letter was not good enough for =
them.  Yes, I=20
agree that it IS orthodonics but it is more than likely caused by the=20
syndrome.</FONT></DIV>
<DIV> </DIV>
<DIV><FONT face=3DArial size=3D2>Chances are, if he did not have aperts, =
he may or=20
may not have to have all the orthodonic work done. that is something we =
will=20
never know.</FONT></DIV>
<DIV> </DIV>
<DIV><FONT face=3DArial size=3D2>Just to give you an example of what =
sort of cost=20
this is, he has started the first phase of his orthodontal work which is =
for the=20
upper and lower palate expanions to the tune of $1950.00.  this is =
just for=20
the first phase and does not include the braces for down the road.  =
The=20
only time they WILL pay is later down the road when he has his midface =
and the=20
orthodonist is working with the plastic surgeon in a hospital=20
atmosphere.</FONT></DIV>
<DIV><FONT face=3DArial size=3D2>Just so you know, we have a $1000 =
lifetime cap on=20
orthodonics.</FONT></DIV>
<DIV> </DIV>
<DIV><FONT face=3DArial size=3D2>I know that there are several more of =
you out there=20
that will be facing this if you haven't already.</FONT></DIV>
<DIV> </DIV>
<DIV><FONT face=3DArial size=3D2>anyway, the reason for this letter is =
because I=20
have decided to appeal their earlier decision.  but I need letters =
from all=20
of you, so I can forward the letters to the insurance company to make my =
case=20
stronger. I just need a letter from you stating why orthodonics with =
apert's=20
should be covered by medical.  As the saying goes, there is =
strength in=20
numbers.</FONT></DIV>
<DIV> </DIV>
<DIV><FONT face=3DArial size=3D2>If you will or can send a letter, =
please sign your=20
name and include your address.  if you don't mind, you can include =
your=20
phone number also. You can either send it to the list or to me=20
privately.</FONT></DIV>
<DIV> </DIV>
<DIV><FONT face=3DArial size=3D2>I KNOW that sometimes appeals can be =
won.  It=20
IS a time consuming process,  the last appeal I had with an =
insurance=20
company took six months.  That one was with Aetna.  And I =
won. =20
To make it short, they paid for all his therapy's at Easter Seal for a =
year and=20
a half.  Then all of a sudden I was contacted and they said they =
could not=20
pay for them any longer because it was by mistate that they had been =
paying to=20
begin with. Well, i did fight them and won.  and they continued to =
cover=20
Easter Seal until Nick was three and then he got his therapy's though =
the school=20
system.</FONT></DIV>
<DIV> </DIV>
<DIV><FONT face=3DArial size=3D2>Thank you in advance,</FONT></DIV>
<DIV> </DIV>
<DIV><FONT face=3DArial size=3D2>Judy</FONT></DIV>
<DIV><FONT face=3DArial size=3D2><A=20
href=3D"mailto:jamerman@uti.com">jamerman@uti.com</A></FONT></DIV></BODY>=
</HTML>

------=_NextPart_000_0005_01BECFAC.55735960--
=========================================================================
Date:         Fri, 16 Jul 1999 18:24:41 EDT
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: TURNING FOUR
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit

Graneebear:
Good to hear from you. I spoke to Katey Grace's parents awhile back. I live
in Lake Mary and work in Ocoee, FL. Unfortunately, I am going on vacation
next week, otherwise, I'd just give them a call from work where it's not long
distance. I tend to get so long winded when talking Apert. Anyway, my
Shirley is 6 and we put her in a pre-K program at 3. It was a program
through the county school system and I have very mixed emotions about it.
What kind of program are they thinking about? I feel it is great to get our
kids out in the real world where they can "grow up" with kids they will be
going to school with. I feel they are more easily accepted this way and it
is great for their social skills. At an early age, kids tend to accept each
other before they even notice the differences. Also, financially, it was
great. No more $90.00 or whatever a week for day care.

On the down side, however, once your child is in one of these programs the
school system tends to "flag and tag" them. They love to keep kids in these
programs, because it means more money for them. They also tend to form
preconceived notions about what your child is cabable of. After 2 years in
pre-K the school then wanted to send Shirley through a "Primary
Communications" kindergarten. At the end of that year they tried to tell me
that it was a 2 year program and that Shirley would "shut down'" in a normal
class room. Well, hello...I'm her mother and I know that her will power is
stronger than just to shut down. I finally got her out at the end of the
first year and she will go to a regular 1st grade this fall. Her IQ is
average. Another thing is that she was in a classroom with speech delayed
kids and tended to pick up some habits such as grunting or signing when she
was perfectly capable of talking.

They are such hard decisions to make when it is concerning your child's
welfare, especially when what you feel is against what all the teachers are
trying to tell you. I feel I have had to fight the system ever since we put
her in it. Here, also we are our kids advocate. And let me tell ya...the
people in the school system don't know what customer service is. They
usually couldn't care less if you want to have a say about the decisions that
are being made concerning your child. They usually all get together before
they get you involved, make their decisions, and then call you in for a
meeting during which they all work at convincing you that they know what is
best for your child and you know nothing. I cried for days after my first
such meeting.

I hope I haven't offended anyone who may be in the school system. Let me say
that this has been my experience only, and perhaps someone else might want to
tell about a more positive experience.

Sorry about the length!
Love to all,
Alice in Orlando, FL.
=========================================================================
Date:         Fri, 16 Jul 1999 17:42:21 -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:         Judy Amerman <jamerman@UTI.COM>
Subject:      Fw: nick
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
Content-Transfer-Encoding: 7bit

Here is a copy of the letter that Nick's doctor sent to the insurance
company, I remember now that we decided to try to get the insurance issue
cleared in advance! Beware, this may happern to you too.

Jud
----- Original Message -----
From: <Irmocat2@aol.com>
To: <jamerman@uti.com>
Sent: Friday, July 16, 1999 5:34 PM
Subject: nick

> 07/16/1999 17:17
>
> Children's Memorial Hospital
> Division of Plastic Surgery
> 2300 Children's Plaza, no. 41
> Chicago, Illinois 60614
>
> 815-942-1588
>
> BILL JUDY AMERMAN
>
> Frank A. Vicari, F.A.C.S., F.A.A.P.
> Plastic and Reconstructive Surgery
> Assistant Professor of Surgery
> Northwestern University Medical School
>
> PAGE 01
>
> Phone: 773.880.3090
>
> Fax: 773.880.3059 e-mail: fvicari@nwu.edu
>
> January 14,1998
>
> To Whom It May Concern
>
> RE: AMERMAN, Nicholas
> DOB; 05103/90
> MRN: 485040
>
> Dear Sir or Madam:
>
> Nicholas Amerman is a seven year old child whom we have known since birth.
He
> carries a diagnosis of Apert's Syndrome, or acrocephalosyndactyly. He has
> been through a number of procedures directed at correction of his
> craniofacial anomaly, his hand anomalies, and has done extremely well
through
> all of these procedures. He is a bright young man with very functional
hands
> and is now coming of an age where we can address his mid-face anomalies
and
> orthognathic issues.
>
> At our most recent orthognathic exam he was seen to have an anterior open
> bite, bilateral crossbite tendencies, anterior crowding, and other dental
> problem which can be addressed by his pediatric orthodontist, Dr. Bailey
> Jacobson, Prior to our surgically correcting his open bite, crossbite, and
> malocclusion, he will need orthodontic interceptive presurgical
preparation.
> I would stress that this is part of the surgical plan and is an integral
part
> of the surgical plan. As a matter of fact, we cannot proceed with surgery
> until he is appropriately set up from an orthodontic standpoint. I hope
this
> clarifies the nature and medical necessity of his interceptive orthodontia
> and allows him to obtain the appropriate coverage.
>
> If you have any questions regarding our diagnosis or treatment plan,
please
> do not hesitate to contact me. With kindest regards.
>
> Sincerely,
>
> Frank A. Vicari M.D.
> Attending Plastic Surgeon
>
> FAV:sb
>
> cc: Dr, Bailey Jacobson
>
>
=========================================================================
Date:         Fri, 16 Jul 1999 18:48:28 EDT
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:         TDeakins1@AOL.COM
Subject:      Re: I need your input!!
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit

Judy -
Our insurance company, Blue Cross / Blue Shield (which is about as bad as you
can get), did cover our daughters ortho work. They declined it initially -
but, then they decline everything initially. We got a letter from Casey's
surgeon, bundled it with a letter from the Orthodondist complete with 8 X 10
glossies (X-rays) and sent it in. Since Casey had previous major
cranialfacial surgery, the pins and screws were visible in the X-ray. Also,
the image of teeth stacked on top of teeth added some value. Anyway, they
relented and have been paying ever since.
-Tony Deakins
=========================================================================
Date:         Fri, 16 Jul 1999 18:54:05 EDT
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:         Irmocat2@AOL.COM
Subject:      Mike.....over the Hill???
MIME-Version: 1.0
Content-Type: multipart/mixed; boundary="part1_405a3031.24c1120d_boundary"

--part1_405a3031.24c1120d_boundary
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit

Please open this, it will be worth your time.......

=========================================================================
Date:         Fri, 16 Jul 1999 16:10:52 -0700
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:         "Brent E. Young" <beyoung@IX.NETCOM.COM>
Subject:      Re: I need your input!!
MIME-Version: 1.0
Content-Type: multipart/alternative;
              boundary="------------28AC5030601A97FA6E177DA9"

--------------28AC5030601A97FA6E177DA9
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit

Dear Judy,
I am Brent Young, stepfather to Kelly Spadini. We live near Sacramento,
CA. She is 17 and I have known her since 1990. Her Mom & I got married
in 1992.
I understand your problem. I have had numerous "discussions" with
providers regarding this congenital defect. I believe that is the main
thrust of the arguement. I tried to stay away from the area that she may
or may not have needed orthodonticts if she did not have Apert's. That
gets into "if" topics which have no bearing on the actual facts.

My feeling has always been that the cosmetic affect is secondary to the
functional benefits received from this care. She needs the craniofacial
surgury in order to allow her to eat, sleep, closeher eyes at night
while sleeping, breath and speak easier and better. Now, in order for
that major surgery to be done, preparatory work needed to be done. That
being orthodontics, removal of 8 teeth, gingivectomy, etc. Therefore, it
stood to reason that the mouth work was all a part of the master plan to
make Kelly's mouth, nasal cavity, teeth, eyes, eyelids as much a
functional part of her being as any other person without Apert's.

A possible analogy I just thought of. A railroad wants to build a track
across country over all kinds of terrain. There are many other railroads
that chose areas that needed no preparation. They only had to lay the
track and run the trains.
Not OUR train company. They go over desert and through mountains. That
would be orthodontics. Has nothing to do with the actual running of the
train but is needed to be done nonetheless.
I didn't think this through but I hope it is a point (or something
similer) that can be made. The care providers probably won't buy off on
it simply because they will state that orthodontics is orthodontics
regardless of the reason for the service. Maybe I can think of an
analogy more healthcare related to hot closer to home.
Take care.
Brent & Denise Young
909 Woodlake Lane
Roseville, CA 95661
916-786-8804

Judy Amerman wrote:

>
>
> HI gang! As I was driving home today from Nick's orthodonist appt. I
> made a decision! but i am going to need help from each and everyone
> of you. Some months back, Nick's dr. had written a letter to my
> insurance sompany, Great West, explaining to them why his medical
> should cover his orthodonist work. He made it plain that Apert
> Syndrome patients always have teeth and palate problems relating to
> the syndrome. Apparently his letter was not good enough for them.
> Yes, I agree that it IS orthodonics but it is more than likely caused
> by the syndrome. Chances are, if he did not have aperts, he may or may
> not have to have all the orthodonic work done. that is something we
> will never know. Just to give you an example of what sort of cost this
> is, he has started the first phase of his orthodontal work which is
> for the upper and lower palate expanions to the tune of $1950.00.
> this is just for the first phase and does not include the braces for
> down the road. The only time they WILL pay is later down the road
> when he has his midface and the orthodonist is working with the
> plastic surgeon in a hospital atmosphere.Just so you know, we have a
> $1000 lifetime cap on orthodonics. I know that there are several more
> of you out there that will be facing this if you haven't already.
> anyway, the reason for this letter is because I have decided to appeal
> their earlier decision. but I need letters from all of you, so I can
> forward the letters to the insurance company to make my case stronger.
> I just need a letter from you stating why orthodonics with apert's
> should be covered by medical. As the saying goes, there is strength
> in numbers. If you will or can send a letter, please sign your name
> and include your address. if you don't mind, you can include your
> phone number also. You can either send it to the list or to me
> privately. I KNOW that sometimes appeals can be won. It IS a time
> consuming process, the last appeal I had with an insurance company
> took six months. That one was with Aetna. And I won. To make it
> short, they paid for all his therapy's at Easter Seal for a year and a
> half. Then all of a sudden I was contacted and they said they could
> not pay for them any longer because it was by mistate that they had
> been paying to begin with. Well, i did fight them and won. and they
> continued to cover Easter Seal until Nick was three and then he got
> his therapy's though the school system. Thank you in advance,
> Judyjamerman@uti.com

--------------28AC5030601A97FA6E177DA9
Content-Type: text/html; charset=us-ascii
Content-Transfer-Encoding: 7bit

<HTML>
<BODY BGCOLOR="#FFFFFF">
 Dear Judy,
<BR>I am Brent Young, stepfather to Kelly Spadini. We live near Sacramento,
CA. She is 17 and I have known her since 1990. Her Mom & I got married
in 1992.
<BR>I understand your problem. I have had numerous "discussions" with providers
regarding this congenital defect. I believe that is the main thrust of
the arguement. I tried to stay away from the area that she may or may not
have needed orthodonticts if she did not have Apert's. That gets into "if"
topics which have no bearing on the actual facts.

<P>My feeling has always been that the cosmetic affect is secondary to
the functional benefits received from this care. She needs the craniofacial
surgury in order to allow her to eat, sleep, closeher eyes at night while
sleeping, breath and speak easier and better. Now, in order for that major
surgery to be done, preparatory work needed to be done. That being orthodontics,
removal of 8 teeth, gingivectomy, etc. Therefore, it stood to reason that
the mouth work was all a part of the master plan to make Kelly's mouth,
nasal cavity, teeth, eyes, eyelids as much a functional part of her being
as any other person without Apert's.

<P>A possible analogy I just thought of. A railroad wants to build a track
across country over all kinds of terrain. There are many other railroads
that chose areas that needed no preparation. They only had to lay the track
and run the trains.
<BR>Not OUR train company. They go over desert and through mountains. That
would be orthodontics. Has nothing to do with the actual running of the
train but is needed to be done nonetheless.
<BR>I didn't think this through but I hope it is a point (or something
similer) that can be made. The care providers probably won't buy off on
it simply because they will state that orthodontics is orthodontics regardless
of the reason for the service. Maybe I can think of an analogy more healthcare
related to hot closer to home.
<BR>Take care.
<BR>Brent & Denise Young
<BR>909 Woodlake Lane
<BR>Roseville, CA 95661
<BR>916-786-8804

<P>Judy Amerman wrote:
<BLOCKQUOTE TYPE=CITE> 

<P><STYLE></STYLE>
<FONT FACE="Arial"><FONT SIZE=-1>HI gang!</FONT></FONT>
<FONT FACE="Arial"><FONT SIZE=-1>As I was driving home today from Nick's
orthodonist appt.  I made a decision!  but i am going to need
help from each and everyone of you.</FONT></FONT> <FONT FACE="Arial"><FONT SIZE=-1>Some
months back,  Nick's dr. had written a letter to my insurance sompany,
Great West,  explaining to them why his medical should cover his orthodonist
work.  He made it plain that Apert Syndrome patients always have teeth
and palate problems relating to the syndrome.  Apparently his letter
was not good enough for them.  Yes, I agree that it IS orthodonics
but it is more than likely caused by the syndrome.</FONT></FONT> <FONT FACE="Arial"><FONT SIZE=-1>Chances
are, if he did not have aperts, he may or may not have to have all the
orthodonic work done. that is something we will never know.</FONT></FONT>
<FONT FACE="Arial"><FONT SIZE=-1>Just to give you an example of what sort
of cost this is, he has started the first phase of his orthodontal work
which is for the upper and lower palate expanions to the tune of $1950.00. 
this is just for the first phase and does not include the braces for down
the road.  The only time they WILL pay is later down the road when
he has his midface and the orthodonist is working with the plastic surgeon
in a hospital atmosphere.Just so you know, we have a $1000 lifetime cap
on orthodonics.</FONT></FONT> <FONT FACE="Arial"><FONT SIZE=-1>I know that
there are several more of you out there that will be facing this if you
haven't already.</FONT></FONT> <FONT FACE="Arial"><FONT SIZE=-1>anyway,
the reason for this letter is because I have decided to appeal their earlier
decision.  but I need letters from all of you, so I can forward the
letters to the insurance company to make my case stronger. I just need
a letter from you stating why orthodonics with apert's should be covered
by medical.  As the saying goes, there is strength in numbers.</FONT></FONT>
<FONT FACE="Arial"><FONT SIZE=-1>If you will or can send a letter, please
sign your name and include your address.  if you don't mind, you can
include your phone number also. You can either send it to the list or to
me privately.</FONT></FONT> <FONT FACE="Arial"><FONT SIZE=-1>I KNOW that
sometimes appeals can be won.  It IS a time consuming process, 
the last appeal I had with an insurance company took six months. 
That one was with Aetna.  And I won.  To make it short, they
paid for all his therapy's at Easter Seal for a year and a half. 
Then all of a sudden I was contacted and they said they could not pay for
them any longer because it was by mistate that they had been paying to
begin with. Well, i did fight them and won.  and they continued to
cover Easter Seal until Nick was three and then he got his therapy's though
the school system.</FONT></FONT> <FONT FACE="Arial"><FONT SIZE=-1>Thank
you in advance,</FONT></FONT> <FONT FACE="Arial"><FONT SIZE=-1>Judy<A HREF="mailto:jamerman@uti.com">jamerman@uti.com</A></FONT></FONT></BLOCKQUOTE>
 
</BODY>
</HTML>

--------------28AC5030601A97FA6E177DA9--
=========================================================================
Date:         Fri, 16 Jul 1999 19:52:38 -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>
From:         Hal Tyre <hetsrt@PRODIGY.NET>
Subject:      Mike's Birthday
MIME-Version: 1.0
Content-Type: multipart/alternative;
              boundary="----=_NextPart_000_0037_01BECFC4.C1D11F80"

This is a multi-part message in MIME format.

------=_NextPart_000_0037_01BECFC4.C1D11F80
Content-Type: text/plain;
charset="iso-8859-1"
Content-Transfer-Encoding: quoted-printable

That was a good one Cathy!! He will have a hard time ever topping that =
to get back at you. We can't stop laughing!!!! Nick, you did a great =
job taking the picture too.
Sherry & Hal (Carmen Rae's grandparents) =20

------=_NextPart_000_0037_01BECFC4.C1D11F80
Content-Type: text/html;
charset="iso-8859-1"
Content-Transfer-Encoding: quoted-printable

<!DOCTYPE HTML PUBLIC "-//W3C//DTD HTML 4.0 Transitional//EN">
<HTML><HEAD>
<META content=3D"text/html; charset=3Dwindows-1252" =
http-equiv=3DContent-Type>
<META content=3D"MSHTML 5.00.2314.1000" name=3DGENERATOR></HEAD>
<BODY bgColor=3D#ffffff>
<DIV><FONT size=3D2>That was a good one Cathy!!  He will have a =
hard time=20
ever topping that to get back at you.  We can't stop =
laughing!!!! =20
Nick, you did a great job taking the picture too.</FONT></DIV>
<DIV><FONT size=3D2>Sherry & Hal (Carmen Rae's grandparents) =20
</FONT></DIV></BODY></HTML>

------=_NextPart_000_0037_01BECFC4.C1D11F80--
=========================================================================
Date:         Fri, 16 Jul 1999 19:04:20 -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:         Judy Amerman <jamerman@UTI.COM>
Subject:      Mike Hill
MIME-Version: 1.0
Content-Type: multipart/alternative;
              boundary="----=_NextPart_000_000F_01BECFBE.030BE680"

This is a multi-part message in MIME format.

------=_NextPart_000_000F_01BECFBE.030BE680
Content-Type: text/plain;
charset="iso-8859-1"
Content-Transfer-Encoding: quoted-printable

Happy Birthday Mike. ( Although by the looks of things I bet you wish =
you could go back to being 39.) It appears that 40 is not going to =
agree with you!!
Just don't look in a mirror and you should be fine.

Sure hope things don't get rougher at 41!

Again, Happy Birthday and many more

Minnie and Nick
jamerman@uti.com

------=_NextPart_000_000F_01BECFBE.030BE680
Content-Type: text/html;
charset="iso-8859-1"
Content-Transfer-Encoding: quoted-printable

------=_NextPart_000_000F_01BECFBE.030BE680--
=========================================================================
Date:         Fri, 16 Jul 1999 17:39:40 -0700
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:         rreed <rreed@CABLEONE.NET>
Subject:      HAPPY BIRTHDAY MIKeeee
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
Content-Transfer-Encoding: 7bit

Hi Mike, I just wanted to wish you a BIG 40th !!!!!!! HAPPY BIRTHDAY. Hey
YOU never look so good at 40!! HA HA! Boy what a day makes, One day you look
fine and now, Wow. Have a great day. And just remember Iam still 5 years
older and I still get carded! Take Care and Have a Happy GREAT DAY Birthday.
Max from HOT HOT Modesto,Calif.
=========================================================================
Date:         Fri, 16 Jul 1999 22:19:48 EDT
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:         Cristy Williams <CARLEE0604@AOL.COM>
Subject:      Re: Mike.....over the Hill???
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit

Happy B-day Mike Hill!! That was cute, what Cathie did.

Cristy and Carlee
=========================================================================
Date:         Sat, 17 Jul 1999 06:55:35 -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:         Tingley <tstctingley@COMWARES.NET>
Subject:      toes
MIME-Version: 1.0
Content-Type: text/plain; charset=ISO-8859-1
Content-Transfer-Encoding: 7bit

I would like some information on getting the toes seperated. We are
thinking of having this done for Carroline. I have been told that the toes
go every which way. Is this true? Thanks for any input. Stephanie
Tingley
=========================================================================
Date:         Sat, 17 Jul 1999 12:26:14 EDT
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:         Marilyn Williams <Mbwill43@AOL.COM>
Subject:      BIRTHDAY!!!!!!!!!!!
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit

HI MIKE, HAPPY BIRTHDAY!!!!!!!!!!!! CAN'T WAIT TO SEE WHAT YOU HAVE IN STORE
FOR CATHIE.LOL.     LOVE MARILYN
=========================================================================
Date:         Sun, 18 Jul 1999 21:01:34 +1200
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:         Howard & Ann <howrdnan@IHUG.CO.NZ>
Subject:      Re: toes
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"

Hi Stephanie

Amy's surgeon won't separate the toes and we don't want him to. Amy does - well, she did, but I think she has accepted our stance because she hasn't talked about it for a while.

Regardless of the internal structure, the reason for our decision is that the outline of her foot where her toes are already goes outwards on both sides. If any of her toes were separated this would increase the "fanning" effect and we would never get her feet into shoes.

Also, we have had so many operations we now question any suggestion of more. If the risks outweigh the benefit, don't do it.

But despite having the same Syndrome our children are all different and you need to assess the state of her feet and the benefits to be achieved.

Good luck with the decision.
Ann
NZ

At 06:55 AM 17/07/99 -0500, you wrote:
>I would like some information on getting the toes seperated. We are
>thinking of having this done for Carroline. I have been told that the toes
>go every which way. Is this true? Thanks for any input. Stephanie
>Tingley
=========================================================================
Date:         Sun, 18 Jul 1999 15:14:16 +0430
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:         NIRVANA <baagherp@EE.SHARIF.AC.IR>
Subject:      hi all

hi everybody
my name is kevin
im live in iran in east of asia
im very happy to join apert list
regards
kevin
=========================================================================
Date:         Sun, 18 Jul 1999 09:25:47 EDT
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:         Jenngram@AOL.COM
Subject:      Re: Loose ends
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit

Jordan will be 2 this Spetember, and aside form Aperts is a very healthy
little boy, yet when hes fussy and/or sick.....I always jump to the very
worst conclusion......and always feel the need to call neuro as opposed to
the pediatrician....and he doesn't even have a shunt.....hes really not even
followed by neuro, minus the 6-12 month checks.....And its always a cold, or
in this case.....its the fact that hes a 2 yrs old, and its his way or the
temper-tantrum higway!!!!

I guess the neurotic worring it comes with the territory, but I have gotten
better over the past 2 yrs!!

Jenn
=========================================================================
Date:         Sun, 18 Jul 1999 10:04:31 -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:         Dora Jefferson <dajeff@SIU.EDU>
Organization: Southern Illinois University at Carbondale
Subject:      Re: Loose ends
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit

Jenn,

I agree. When ever I hear hoof beats rounding the barn, I always expect
to see a Zebra. Sometimes it just wears me out. However, in my
defense, Thomas has had some serious situations, such as the bacterial
meningitis, that have made me very sensitive to changes in his behavior
and pallor. The truth is that our children do have a higher risk of
developing a serious problem than do children that don't have cranial
deformities and aren't exposed to multiple surgeries.

I am always waiting for the other shoe to drop.

Warmly, Dori
=========================================================================
Date:         Sun, 18 Jul 1999 11:09:45 EDT
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: Overload
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit

Lisa,

I know I've been there. It is starting to get easier though now that
surgeries are not every few months. The therapy appts. and misc. dr. visits
still keep me on my toes, but we do mostly enjoy Jonathan for just being a
very active and curious 2 year old.

I remember when Jonathan was born in our small local hospital, the nurses
(and doctor) would come in and say "they just need to do a little plastic
surgery and he'll be fine". Hearing you say that again reminds me of how
angry it made me when I realized just how involved Jonathan's syndrome really
was and how ignorant these medical personnel were.

Hang in there, your feelings are not unwarranted. Hope you have a great day
tomorrow.

Brenda
=========================================================================
Date:         Sun, 18 Jul 1999 10:33:53 -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:         Carol <tcgraves@BELLSOUTH.NET>
Subject:      Nick G
MIME-Version: 1.0
Content-Type: multipart/alternative;
              boundary="----=_NextPart_000_000F_01BED109.08297C80"

This is a multi-part message in MIME format.

------=_NextPart_000_000F_01BED109.08297C80
Content-Type: text/plain;
charset="iso-8859-1"
Content-Transfer-Encoding: quoted-printable

Hi all Nick's Dad here, well nick is going in for surgery this week just =
asking all you great people to keep him in your prayers. As you might =
already know he will be going in to undergo the red system... Carol and =
i went last week and gave blood for him , I gota tell ya I started =
sweating and felt dizzy thought I was gonna pass out..lol (my first time =
giving blood) But hey it was nothing compared to what he goes threw. =
Nick gave us a scare last week, he was jumping up to get on the bed and =
he had a quarter in his mouth!! Well yep he got choked on it ..we called =
911 he got an ambulance ride to the emergency room .we didn't know for =
sure he didn't swollow it and it showed up on an xray so they put him to =
sleep and went in and got it..wheww! never a dull moment with =
nick!!..lol
                                                                         =
                        =20
                                                                         =
         Tim

------=_NextPart_000_000F_01BED109.08297C80
Content-Type: text/html;
charset="iso-8859-1"
Content-Transfer-Encoding: quoted-printable

------=_NextPart_000_000F_01BED109.08297C80--
=========================================================================
Date:         Sun, 18 Jul 1999 16:22:18 -0400
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: toes
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit

Hi Steph,

How are you guys doing?? We are doing great, getting ready to head up north in
a couple of weeks, can't wait...
I just want to give you my input on the toes... At this moment we don't think
we will have anything done on her feet, unless something happens for the worse
that will make us schedule a surgery, but it will only be to help soothe
discomfort or pain that might develop or difficulty walking or something. So
far Nicole is walking and running just great and I don't think her toes affect
her in any way. At least for now they don't, I don't know if this will change
as she grows, I guess we'll see. As far as beauty hey they are beautiful kids
and there are lots of cool shoes even sandals (of course not the stick your toe
kind) that fit them just great. Nicole's big toe also tends to want to look
outward, so I would think if we were to release that puppy it would go hog wild
(like the farm humor)ha, ha... Anyway these are my 2 cents on the
matter....talk to you soon...

Raquel.....

Tingley wrote:

> I would like some information on getting the toes seperated. We are
> thinking of having this done for Carroline. I have been told that the toes
> go every which way. Is this true? Thanks for any input. Stephanie
> Tingley
=========================================================================
Date:         Sun, 18 Jul 1999 18:18:17 EDT
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:         "(Marianne Camous)" <Camous@AOL.COM>
Subject:      Re: Overload
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit

In a message dated 7/15/1999 9:24:27 AM Pacific Daylight Time,
jgibson2@EROLS.COM writes:

<< I'm here because as a NICU
nurse I want to learn more about Apert so I won't say things like
that to people. >>

Bravo for you Judy! When my son,Evan was born we had prenatal diagnosis so
the genetics folks put a couple of articles about Apert in the NICU and L&D
for staff education. The neonatologist told me that the RN's actually
discovered his cleft palate which she had missed on her initial exam as they
had read the article and were looking for it. This was in Pittsburgh, PA and
two months later a baby girl was born there (por transferred into the NICU
from the 'burbs- I can't remember now) with Apert so they were REALLY
prepared as they still remembered Evan.

Marianne Camous
Apert mom and PA-C
San Carlos, CA
=========================================================================
Date:         Sun, 18 Jul 1999 18:39:04 EDT
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:         "(Marianne Camous)" <Camous@AOL.COM>
Subject:      Re: Overload
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit

Lisa,
I can relate to your feelings...My son, Evan just turned three. He has had
two cranial surgeries, a trach, a shunt, two hand surgeries, etc....He's done
really well for the past 1 1/2 years but the first 18 months were
unbelievable. I only now realize how hard they were...like the old saying
about being "up to your ass in alligators" . We had prenatal diagnosis and I
had Medline access on my desk at work. I pulled articles and searched the med
library until I had to just put it aside and "not go there". Evan worse than
"a little Plastic Surgery" is reading some of the early studies by Cohen and
Kreiborg (sp?) After we got Evan home I took a few weeks and didn't even make
an appointment with the cranio clinic...I'm so glad I did because it gave me
(and the rest of the family- including his 2 older sisters)a chance to bond
with Ev. At about 4 or 5 weeks he got sick and needed to be trached and
things really rolled from there but I was also much more comfortable by that
time that he was still a "normal baby" in so many ways!

In a few years you will marvel about how quickly you learned medical
terminology , hospital procedures, and sharpened your diagnostic skills! You
will face down the most surly surgeon with nary a qualm and calmly teach
experienced health care providers about the nuances of this syndrome. (ie
"Gee, since he doesn't have big enough opening in the back of his nose for
air, I wonder how you'll find room for a feeding tube???") You'll eventually
laugh about the very things that made you cry. And every once in a while for
a fleeting moment you'll wonder what it would have been like if....but then
you'll realize that all of this is part of who your child is and you'll
realize that "special kids" truly are in a way you'd never have believed
without living it. Your families will come along too...they are probably more
frustrated than you because they can't do anything about it and feel even
more helpless than you.

Hang in there! Enjoy your beautiful daughter!

Marianne
San Carlos, CA
=========================================================================
Date:         Sun, 18 Jul 1999 20:35:16 EDT
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:         Debbie Shepherd <Dshep9141@AOL.COM>
Subject:      Re: Overload
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit

dear lisa, I think we all can relate to just wanting to have a regular "baby
day". sometimes i dont want to talk about jillian and her problems at all.
but i can say that there are more days now tht we are just a normal family.
we havent had any surgery for her since feb. and several of us in my and my
husbands family have had some serious surgeries. so jillian has sort of
stepped out of the limelight for a while which is quite alright with me! it
has given jillian the chance to show everyone who she is and how well she
really is doing. and i think that comes from not having to worry about her. i
think everyone gets wrapped up in the worrying aspect of things and forget
that time passes much to quickly. we all need to take the time and enjoy with
are children. that way when we look back on the years past we can remeber all
the fun we had instead of remembering how much worrying we did!! it is hard
to tell the mothers not to worry or make them stop doing it. its just in
their blood! love debbie (jillians mommy)
=========================================================================
Date:         Sun, 18 Jul 1999 21:26:50 -0400
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: BIRTHDAY!!!!!!!!!!!
MIME-Version: 1.0
Content-Type: text/plain; charset=ISO-8859-1
Content-Transfer-Encoding: 7bit

Thanks Marilyn. That was a good one. I like a challenge. I don't get
even, I get ahead. Cathie needs to take cover as she hits the big 40 this
year also!

----------
> From: Marilyn Williams <Mbwill43@AOL.COM>
> To: APERT@LISTSERV.AOL.COM
> Subject: BIRTHDAY!!!!!!!!!!!
> Date: Saturday, July 17, 1999 12:26 PM
>
> HI MIKE, HAPPY BIRTHDAY!!!!!!!!!!!! CAN'T WAIT TO SEE WHAT YOU HAVE IN
STORE
> FOR CATHIE.LOL.     LOVE MARILYN
=========================================================================
Date:         Sun, 18 Jul 1999 21:56:44 +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: Loose ends
In-Reply-To: <d6101f06.24c101a6@aol.com>
MIME-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7BIT

Alice,
> While I'm on the subject ... don't you just love it when the doctors and
> nurses ask you to hold your child down? I finally started telling them that
> I didn't do hold downs because I am the hero Mommy that moves in, after they
> are all done, to kiss it and make it all better. I hated the look my
> precious baby would get in her eyes when she looked into mine, while I was
> helping all the strangers hold her down.

Good for you! Keep educating them! I love the way you say it too.
You won't hurt anyone's feelings and they'll understand your point of
view.

Parents whose kids are sick for the first time, or who
aren't sick often want to help with hold downs. I don't work the peds
floor often, but I don't encourage this even for them. I don't
actively discourage it either, as I figure they know their kids lots
better than I do. Sometimes it works, sometimes it doesn't.

I've held my kids while they got routine immunizations. I've even
"helped them hold still" for blood draws -- as long as they weren't
fighting. Beyond that, it's not MY job and it's certainly not yours.
I agree that mom and dad really need NOT to be the bad guys when
really bad stuff is happening to the kid. It may be faster to ask
parents to help, but it's not fair. There are a few exceptions, but
those parents know who they are and aren't shy about saying so.

If you are allowed to stay in the room, you can provide a hand for
the child tohold, maintain eye contact, and speak soothingly to help
keep the child calm. Just because someone asks you to leave
during a procedure doesn't mean that you have to go. Calmly but
firmly stating that you'd rather stay (assuming you really want to)
will overcome most objections. If there are valid reasons for you to
leave, the nurse or doctor needs to explain them.

I'll admit that it raises my stress level a little to have mom or
dad watching while I'm starting an IV, but it doesn't lower my skill
level. I ask if parents would like to leave, but if they want to
stay, they do. I never ask them to hold, but some insist. I always
have another nurse available to assist as well, because a parent who
hasn't been through that before may be less help than they think.

Judy G.
=========================================================================
Date:         Sun, 18 Jul 1999 21:23:49 -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:         interquetzal <interquetzal@MAIL2.GUATE.NET>
Subject:      Thank you!
In-Reply-To: <A1E737EE1A8CD011A8320060972D306C1AE50B@exchange.scrs.state
              .sc.us>
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"

Hello Don!

Thank you for taking the time you took by replying my email. All the
information is very useful my wife, "Angie" and myself appreciate it. It is
indeed a relief to know that you are not alone with all of what is
happening right now.

I have another question, if you could please send me any information of
foundations that could help me with the surgeries that "Angie" has to go
through. I know it is going to be a difficult way down the road but, I also
know that it will be worth it.

Thank you once again, for all of your support and any help that you could
provide me with.

Sincerely yours,

Julio Fuentes
=========================================================================
Date:         Mon, 19 Jul 1999 02:46:12 EDT
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:         Lisa Guyette <LAM1126@AOL.COM>
Subject:      Reponses helped a lot
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit

Hi,
All the responses to my overload and loose ends email were wonderful. I
thank you for letting me feel not crazy or alone.

Samantha and I spent the weekend at my parents and went to lunch with
Samantha, my mom and mother-in-law on Saturday. It was nice. But I still
was feeling very edgy. But we all managed to just have fun.

I think that while I have made sure that there would be no surprises with
Samantha, and learned all I could about Aperts, I probably secretly hoped
that while she had Aperts, she wouldn't have to go through all of the
surgeries and other stuff (glasses).   I think I hoped prayer and strong will
would do it. Yes, I can honestly say that when she was in her first two
months I used to whisper to her to "Will your midface to grow." This whole
midface thing seemed surreal so why not I thought.    By the way, to those
that are new, I don't think it works.   :)

When we were told Samantha needed glasses I realized that we have just
boarded the Apert train, and I don't know when we get off. It was funny to
hear that many of your children don't keep their glasses on. Samantha must
know what's coming she spent the whole weekend pulling off mine. She didn't
even put them in her mouth like everything else, she threw them on ground
with disgust.

I can't imagine how lonely it must of felt before Teeter's Page and the
internet and not knowing if your thoughts were shared by anyone else in the
world.

You all are wonderful

Lisa Guyette
Mother of Samantha 8 months
=========================================================================
Date:         Mon, 19 Jul 1999 08:29:02 -0700
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:         "Pulido, Laura" <PulidoL@OR.CSMC.EDU>
Subject:      Picture of My Kids
MIME-Version: 1.0
Content-Type: multipart/mixed; boundary="----_=_NextPart_000_01BED1FB.73223F00"

This message is in MIME format. Since your mail reader does not understand
this format, some or all of this message may not be legible.

------_=_NextPart_000_01BED1FB.73223F00
Content-Type: text/plain

Hello everyone,

I wanted to thank everyone who has sent pictures. I keep trying to send
Martha's but am currently going through a lot of emotional stuff.

I am learning to use Adobe Photodeluxe and wanted to share this collage of
pictures of my babies.

> <<Pulido Palacio Kids.jpg>>
>
>

=========================================================================
Date:         Mon, 19 Jul 1999 09:36:51 -0700
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:         "Scott Pengelly, Ph.D." <scottp@EUGENEEZ.NET>
Subject:      Re: Picture of My Kids
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit

Good morning, Laura:
Scott Pengelly here in Eugene. Thanks so much for the great collage. Fun to
see these wonderful faces.

All the best,
Scott

Pulido, Laura wrote:

> Hello everyone,
>
> I wanted to thank everyone who has sent pictures. I keep trying to send
> Martha's but am currently going through a lot of emotional stuff.
>
> I am learning to use Adobe Photodeluxe and wanted to share this collage of
> pictures of my babies.
>
> > <<Pulido Palacio Kids.jpg>>
> >
> >
>
>   ------------------------------------------------------------------------
>
>                                  Name: Pulido Palacio Kids.jpg
>    Pulido Palacio Kids.jpg       Type: JPEG Image (image/jpeg)
>                              Encoding