i am not on aol, and when you sent the jpg pictures, i saved them on my hard
drive and then used corel photoshop to open and view them.

This is the only way I know to do it.  So don't listen to me because that is
a case of t he blind leading the nearsighted!

Pat (Peach's mom --I mean EvaJessie's mom)

>It seems everyone having trouble are on AOL.  When I received the EMAIL on
>the listserver the files were in jpg.  What are you getting??????  I don't
>have a clue.  I guess this is what happens when a computer-illiterate tries
>to do fancy things on her computer.
>
>Robin
>
>----------
>> From: Nodrmat26@AOL.COM
>> To: APERT@LISTSERV.AOL.COM
>> Subject: A Few Things
>> Date: Saturday, November 07, 1998 10:07 PM
>>
>> Zoey's Mom here.  I cannot for the life of me pull up the pics of Carmen
>Rae,
>> I believe I can only pull up JPG or GIF formats.  Does anyone have tips
>on how
>> to convert to these formats?
>>
>> Congratulations to the Allison family on the birth of their new baby!
>>
>> Zoey woke up from her nap on Friday with the sniffles.  Her surgery is
>> sceduled for the 24th.  I'm a little worried, because she almost always
>spends
>> a few days in the hospital when she gets sick and I really want this hand
>> surgery over with before the holidays.  If everyone wouldn't mind willing
>> Zoey's cold to go away.  (smile)
>>
>> Christina
>> San Antonio
>
email to: bluenose@telusplanet.net
IM: onlypeach
One doesn't discover new lands without consenting to lose sight of the shore
for a very long time.  Andre Gide
=========================================================================
Date:         Sat, 7 Nov 1998 23:50:48 -0600
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Judy Amerman <jamerman@UTI.COM>
Subject:      Carmen Rae
MIME-Version: 1.0
Content-Type: text/plain; charset=ISO-8859-1
Content-Transfer-Encoding: 7bit

Robin,

i just seen the pictures. They are adorable.  I could only see them on take
two.

Judy
=========================================================================
Date:         Sun, 8 Nov 1998 15:40:48 -0800
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Jason Hubbard <jason@JHUBBARD.DEMON.CO.UK>
Subject:      Re: 11/4 Newborn diagnosed with apert - help
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding:  quoted-printable

Bonnie,

It is a shock for many of us when a baby is unexpectedly born with Apert =
syndrome. Regretably there are very few doctors who are familiar with =
Aperts (in England anyway) and so information is generally very slow in =
coming through. These support groups are a source of much help and =
inspiration.

Our own little boy (Miles, 2 years old) was also very much a surprise =
and initially a disappointment (sometimes leading to depression), but =
after a little time you start to come to terms with this, accept it and =
move on. Miles is now a lovely young boy full of life and fun. We love =
him very much and are proud of him, I am sure you will all feel the same =
way before too long.

I hope the surgery goes well - Surgeries are probably the most traumatic =
part of Apert's  syndrome, we are still not used to it ourselves so I =
can offer no advice here except that family support is extremely =
important - United you will get through this.

Very best wishes,
Jason & Victoria Hubbard

-----Original Message-----
From:   Bonnie Zimmerman [SMTP:bonnie@FRANCISCAN.COM]
Sent:   06 November 1998 14:33
To:     APERT@LISTSERV.AOL.COM
Subject:        11/4 Newborn diagnosed with apert - help

We are family in shock and very scared.  My stepdaughter who is 20 years
old, a single mother and living with us delivered a son on Wednesday
with what appears to be a very serious case of apert.

I read through the website and printed it out to bring to her at the
hopsital tonight.  I'm not sure she is capable of handling this
situation.

They are planning to do the skull surgery in about a week.  We will
bringing the boy home on Monday.  Can you offer any advice on what to
do, or tips on care?

Are there any support groups or help in the Northern California area?
We are in the Napa Valley.

Thank you.

Bonnie Zimmermann
=========================================================================
Date:         Sun, 8 Nov 1998 17:14:35 -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:         Laurie Bailey <jkb@ELPASO.NET>
MIME-Version: 1.0
Content-Type: text/plain; charset=ISO-8859-1
Content-Transfer-Encoding: 7bit

Hey Fosters,

I have purchased hats for Jacob that have "ear doggies" on them. These are
the little flaps that the strings are usually attached to in order to tie
the hat. They have worked out really well.

Laurie
jkb@elpaso.net

----------
> From: foster <foster@ICONTECH.COM>
> To: APERT@LISTSERV.AOL.COM
> Subject:
> Date: Thursday, November 05, 1998 8:07 PM
>
> Joanne- Its nice to have you back with us.
>
>
> Hope Emily and Jacob are on their way to a speedy recovery.
>
> Billy's sleep study shows no apnea so we don't have to do anything with
his
> adenoids after all. He has shaken off his cold and is eating like a horse
> again(or a least a big pony).This will also mean no more talk about a
trache
> at least for now. He will be having a CT scan in Jan. and we are praying
> that there will  be no need for a shunt. It is so great to see him being
his
> old self again. He has also been able to catch up on his shots.
>
> Our dog Casey has given birth to 10 beautiful puppies and the kids are
crazy
> over them. One good thing is we have homes waiting for each and everyone
of
> them. But Casey will be getting fixed as soon as the vet gives the ok.
She
> is a wonderful mother and deserves a brake .
>
> Hope today finds everyone doing well. Also thinking about Jacob and Emily
> and praying for the best for both of them.
>
>
> One question.. Has anyone else had trouble finding hats for their
children?
> Billy's ears are low set and he doesn't do very well with hoods. I have
had
> a hard time finding a hat that will fit his head well and cover both of
his
> ears at the same time. Anyone had this trouble?
>
>
> Karen(PA)
=========================================================================
Date:         Sun, 8 Nov 1998 17:45:22 -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:         Laurie Bailey <jkb@ELPASO.NET>
Subject:      Jacob's surgery
MIME-Version: 1.0
Content-Type: text/plain; charset=ISO-8859-1
Content-Transfer-Encoding: 7bit

Hey all!!

Sorry for the delay in replying on Jacob's surgery.

He is doing wonderfully. They were able to use all the skin from the
expanders to complete the digit separation and only had to use a one inch
long section of skin graft. Jacob's digits are different from any his
doctor has seen. They were fused at the top joint then separated, then
fused at the second joint, and then separated. Interesting. We have
confirmation on being able to have all five digits. In order to make his
index fingers stable, they inserted pins that will be removed at a later
date.

His hands are bandaged and wrapped with ACE bandages for one week. I am so
looking forward to seeing the results.

They also did a small procedure on his left foot. Jacob has a bone in the
middle of the top of his foot that would rub horribly in his shoe. This, of
course, made shoe buying a treat. The doctors were able to go in and shave
the bone down to the level of the other bones. These bandages will be on
for 5 days.

I think this all the updating for now.

Laurie
jkb@elpaso.net
=========================================================================
Date:         Sun, 8 Nov 1998 21:09:19 -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:         Chad & Denise Graham <cgraham@INFOAVE.NET>
Subject:      hello
MIME-version: 1.0
Content-type: text/plain; charset="us-ascii"

Carmen's pictures are adorable!!  I can download in JPG too.  I use my
Internet explorer and drag the picture on to that screen and it opens it.
I do not know if that will help any.
 

Congratulations Laura on your new arrival.  I am so happy for you and your
family.

Good luck to everyone getting ready or has recently had surgery.  We were
supposed to have a frontal advancement on Nov. 5, but was cancelled and
moved to Jan. 21, 1999.

God Bless everyone and I hope your holidays are hospital free!!!!!
 

                                                        Denise Graham
=========================================================================
Date:         Mon, 9 Nov 1998 08:58:00 -0500
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Don Sears <dsears@SCRS.STATE.SC.US>
Subject:      Recent problems with email attachments
MIME-Version: 1.0
Content-Type: text/plain

I have access to quite a few email sources, and I can tell you that
AOL's mail service cannot handle multiple file attachments.  Carmen's
pictures were sent as multiple files attached to one email and that just
translates to junk on AOL's email system.  With her parents permission,
i will post them on the website for everyone....how about it, Mike and
Robin?
=========================================================================
Date:         Mon, 9 Nov 1998 12:03:56 -0500
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         ROBIN L HILL <CARMENRAE@PRODIGY.NET>
Subject:      Re: Recent problems with email attachments
MIME-Version: 1.0
Content-Type: text/plain; charset=ISO-8859-1
Content-Transfer-Encoding: 7bit

Definitely!!!  We are VERY proud parents that would love our little cutie
shared around the world!  Thanks Don!!!!!!!

Robin

----------
> From: Don Sears <dsears@SCRS.STATE.SC.US>
> To: APERT@LISTSERV.AOL.COM
> Subject: Recent problems with email attachments
> Date: Monday, November 09, 1998 8:58 AM
>
> I have access to quite a few email sources, and I can tell you that
> AOL's mail service cannot handle multiple file attachments.  Carmen's
> pictures were sent as multiple files attached to one email and that just
> translates to junk on AOL's email system.  With her parents permission,
> i will post them on the website for everyone....how about it, Mike and
> Robin?
=========================================================================
Date:         Mon, 9 Nov 1998 09:09:38 -0800
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Bonnie Zimmerman <bonnie@FRANCISCAN.COM>
Organization: Franciscan Estates
Subject:      Thank you and an update
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit

First of all, thank you so much for responding to my letter.  In the
chaos of last week things were'nt as clear as they should be, therefore
let me give you an update.

The baby's name is Oliver Edward Cyrus Battaile.  He was born 8 pounds
12 ounces and 22" long.  He was a C-section.  His hands and feet are
fused, has the cranio problems and was having difficulty breathing.

He was sent to another hospital shortly after his birth.  On Friday his
mother was able to join him.  They spent the weekend together getting to
know each other.  His breathing is better and they removed the IV tube
and the respirator.  He began making attempts at breast feeding
yesterday.

We are bringing him home tonight.  The plan is for us to visit
University of California San Francisco Medical Center in about a week
and 1/2 for a full day of tests and evaluations.  They will then make
their recommendations to us.

Our additional problem is that the Grandfather is also a 24 hour
caregiver for his 77 year old mother, who has dementia, alzheimers and
some other brain related problems.  She believes Robert is her husband
and is not very friendly.  We will have to keep her, Beth and the baby
separated and try to keep peace.  As it is, I can't even live there full
time cause she is so agitated when she sees me.

I'm sorry that this sounds like some kind of crazy soap opera - but we
have to face what life deals us.

You letters were very reassuring and I will pass them on to Beth and
update when I know more.  I'll probably be asking questions as well.

Thank you again.
=========================================================================
Date:         Mon, 9 Nov 1998 12:30:16 -0500
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         ROBIN L HILL <CARMENRAE@PRODIGY.NET>
Subject:      Re: Thank you and an update
MIME-Version: 1.0
Content-Type: text/plain; charset=ISO-8859-1
Content-Transfer-Encoding: 7bit

Hello Bonnie!  We are Mike, Robin, and Carmen Rae Hill from Newnan, Georgia
(30 miles southwest of Atlanta).  Our little Carmen Rae was born on January
18, 1998 with Apert Syndrome.  She was 8 pounds and also had a bit of
trouble breathing at first.  She was kept under an oxygen tent in the
hospital for 4 days and then came home on an apnea monitor.  She never had
any real "episodes" after coming home and we now believe it was more of a
precaution than a neccesity.  Anyway, Carmen Rae is now almost 10 months
old and has had surgery to place a VP shunt (3 months), one cranial surgery
(5 months) and one hand surgery to release her thumbs (8 months).  She is
doing GREAT!!!!

It sounds as if you are going through alot right now.  I am glad to hear
that the situation with the baby is maybe not as critical as first
believed.  I am also sorry to hear about the unfortunate situation with
your mother-in-law.  All I can tell you is to hang in there.  Your step
daughter will definitely need your support.  It is not always an easy road,
but it is travelable (NOT SURE THAT IS A WORD).

We will keep your family in our thoughts and prayers.  Please keep us
updated on your situation and ask any questions you may have about little
Oliver.  This listserver family is wonderful and I know you will find it a
comforting and supportive place to be.

Welcome and good luck.

Robin Hill

----------
> From: Bonnie Zimmerman <bonnie@FRANCISCAN.COM>
> To: APERT@LISTSERV.AOL.COM
> Subject: Thank you and an update
> Date: Monday, November 09, 1998 12:09 PM
>
> First of all, thank you so much for responding to my letter.  In the
> chaos of last week things were'nt as clear as they should be, therefore
> let me give you an update.
>
> The baby's name is Oliver Edward Cyrus Battaile.  He was born 8 pounds
> 12 ounces and 22" long.  He was a C-section.  His hands and feet are
> fused, has the cranio problems and was having difficulty breathing.
>
> He was sent to another hospital shortly after his birth.  On Friday his
> mother was able to join him.  They spent the weekend together getting to
> know each other.  His breathing is better and they removed the IV tube
> and the respirator.  He began making attempts at breast feeding
> yesterday.
>
> We are bringing him home tonight.  The plan is for us to visit
> University of California San Francisco Medical Center in about a week
> and 1/2 for a full day of tests and evaluations.  They will then make
> their recommendations to us.
>
> Our additional problem is that the Grandfather is also a 24 hour
> caregiver for his 77 year old mother, who has dementia, alzheimers and
> some other brain related problems.  She believes Robert is her husband
> and is not very friendly.  We will have to keep her, Beth and the baby
> separated and try to keep peace.  As it is, I can't even live there full
> time cause she is so agitated when she sees me.
>
> I'm sorry that this sounds like some kind of crazy soap opera - but we
> have to face what life deals us.
>
> You letters were very reassuring and I will pass them on to Beth and
> update when I know more.  I'll probably be asking questions as well.
>
> Thank you again.
=========================================================================
Date:         Mon, 9 Nov 1998 22:55:58 +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:         "J. G. Lindamood" <chanan8@JUNO.COM>

Hello everyone!

My thoughts and prayers have been with you all.

On Wednesday, November 11, I'll be going for my CT Scan to determine the
(hopefully smaller) size of the infamous spot on my lung.  Up until a few
days ago I was nonchalant about the whole thing.  Now I feel like I
slammed into a brick wall. Even though I saw the original scan and the
x-rays following that indicated the spot was getting smaller, I'm still
getting nervous.  My step mom believes the whole family is a little gun
shy these days.  So much has happened to us, we flinch at the smallest
jolt. Please pray for me and mine.  And pray that I will feel like
getting up tomorrow morning, unlike today.  Thanks.

Hope all is well where you are.

Joanne, no snow yet, in Ohio!
=========================================================================
Date:         Mon, 9 Nov 1998 23:02:07 -0800
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Joseph Chan <jchan7@PACBELL.NET>
Subject:      Birthday thoughts
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
Content-Transfer-Encoding: 7bit

Dear Janine,
     Thanks for the birthday wishes.  Can't imagine Roxy turning a decade
old---terrific ten!  I never imagined we would arrive at this point given
how grim things looked at birth (she had an apgar score of just "1").  God
has carried her through all those numerous surgeries.  We pray for our
younger friends who are still going through the painful metamorphosis,
knowing that God will carry you through, too.
     We celebrated on Saturday with a party at home...a pinata, a jumpy
thing, games, and cake.
     She beamed. You can only imagine how honored I am to have her in my
life.  She has brought boundless love and perpetual courage.  Who would've
guessed this funny looking kid could be so beautiful?

Rose
La Mirada, CA
=========================================================================
Date:         Tue, 10 Nov 1998 08:14:43 EST
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Firefli007@AOL.COM
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit

Dear Joanne,

We are praying for you!......

Jenny (never any snow in Georgia)
=========================================================================
Date:         Tue, 10 Nov 1998 11:16:28 EST
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Jenngram@AOL.COM
Subject:      Re: surgery
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit

Just wanted to post a quick note to say that Jordan is home from surgery, with
a matching index finger on the left hand. The surgery took a bit longer than
expected, but results were good. He did well, but is grumpier than usual b/c
the surgery has knocked him on his behind, and he was used to being up and
moving about.

Can't help but feel bad for him, but in a few weeeks all will be back to
normal....actually that eill probablly occur sooner than I think!!! It usually
does..

Hope everyone is recovering nicely, and we are thinking of you Joanne and
Brenda as well!!!

Jenn (Tampa/St. Pete....snow???????that is a 4 letter word down here! ha!)
=========================================================================
Date:         Tue, 10 Nov 1998 13:03:54 -0800
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         "Pulido, Laura" <PulidoL@OR.CSMC.EDU>
Subject:      FW: Great story!
Comments: To: "Mathieu, Yvonne" <YMathieu@OR.CSMC.EDU>
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"

> ALL GOOD THINGS
> He was in the first third grade class I taught at Saint Mary's
> School in Morris, Minn.  All 34 of my students were dear to me, but
> Mark Eklund was one in a million.  Very neat in appearance, but
> had that happy-to-be-alive attitude that made even his occasional
> mischievousness delightful.  Mark talked incessantly.  I had to
> remind him again and again that talking without permission was not
> acceptable.
> What impressed me so much, though, was his sincere response every
> time I had to correct him for misbehaving - "Thank you for correcting
> me,
> Sister!"
>
> I didn't know what to make of it at first, but before long I became
> accustomed to hearing it many times a day.
> One morning my patience was growing thin when Mark talked once
> too often, and then I made a novice-teacher's mistake.  I looked
> at Mark and said, "If you say one more word, I am going to tape your
> mouth shut!"
> It wasn't ten seconds later when Chuck blurted out, "Mark is
> talking again."
> I hadn't asked any of the students to help me watch Mark, but
> since I had stated the punishment in front of the class, I had  to act
> on it.
> I remember the scene as if it had occurred this morning.  I walked to
> my desk,
> very deliberately opened by drawer and took out a
> roll of  masking tape.  Without saying a word, I proceeded to
> Mark's desk, tore off two pieces of tape and made a big X with them
> over his
> mouth.  I then returned to the front of the room.
> As I glanced at Mark to see how he was doing, he winked at me.
> That did it!!  I started laughing.  The class cheered as I walked
> back to Mark's desk, removed the tape, and shrugged my shoulders.  His
>
> first words were, "Than you for correcting me, Sister."
> At the end of the year, I was asked to teach junior-high math.
> The years flew by, and before I knew it Mark was in my classroom
> again.  He was more handsome than ever and just as polite.  Since he
> had to
> listen carefully to my instruction in the "new math," he did not talk
> as
> much in ninth grade as he had in third.  One Friday, things just
> didn't feel right.  We had worked hard on a new concept all week, and
> I sensed that the students were frowning, frustrated with themselves
> -
> and edgy with one another.
> I had to stop this crankiness before it got out of hand.  So I asked
> them to list the names of the other students in the room on two sheets
> of paper, leaving a space between each name.  Then I told them to
> think of the nicest thing they could say about each of their
> classmates and write it down.  It took the remainder of the class
> period to finish their assignment, and as the students left the room,
> each one handed me the papers.  Charlie smiled.  Mark said, "Thank you
> for teaching me, Sister.  Have a good weekend."
> That Saturday, I wrote down the name of each student on a separate
> sheet of paper, and I listed what everyone else had said about that
> individual. On Monday I gave each student his or her list.
> Before long, the entire class was smiling.  "Really?"  I heard
> whispered.
> "I never
> knew that meant anything to anyone!"  "I didn't know others liked me
> so much."
> No one ever mentioned those papers in class again.  I never  knew
> if they discussed them after class or with their parents, but it
> didn't
> matter.
> The exercise had accomplished its purpose.  The students were happy
> with themselves and one another again.
> That group of students moved on.  Several years later, after I
> returned from vacation, my parents met me at the airport.  As we were
> driving home, Mother
> asked me the usual questions about the trip -  the  weather, my
> experiences in
> general.  There was a lull in the
>  conversation.  Mother gave Dad a side-ways glance and simply says,
> "Dad?"
> My  father cleared his throat as he usually did before something
> important.
> "The Eklunds called last night," he began.
> "Really?"  I said.  "I haven't heard from them in years.  I wonder
> how
> > Mark
> > >is."
> > >Dad responded quietly.  "Mark was killed in Vietnam," he said.
> > >"The funeral is tomorrow, and his parents would like it if you
> could
> > >attend."
> > >To this day I can still point to the exact spot on I-494 where
> > >Dad told me about Mark. I had never seen a serviceman in a military
>
> > >coffin before.  Mark looked so handsome, so mature.  All I could
> think
> > >at that moment was,  Mark I would give all the masking tape in the
> world
> > if
> > >only you would talk to me.
> > >The church was packed with Mark's friends.  Chuck's sister sang
> > >"The Battle Hymn of the Republic."  Why did it have to rain on the
> day of
> > the
> > >funeral?
> > >It was difficult enough at the graveside.  The pastor said the
> usual
> > prayers,
> > >and the bugler played taps.  One by one those who  loved Mark took
> a
> last
> > walk
> > >by the coffin and sprinkled it with holy water. I was the last one
> to
> > bless
> > >the coffin.  As I stood there, one of the soldiers who acted as
> > pallbearer
> > >came up to me.  "Were you Mark's math teacher?" he asked.  I nodded
>
> as I
> > >continued to stare at the coffin.  "Mark talked about you a lot,"
> he
> > said.
> > >After the funeral, most of Mark's former classmates headed to
> Chuck's
> > >farmhouse for lunch.  Mark's mother and father were there,
> obviously
> > waiting
> > >for me.  "We want to show you something," his father said, taking a
>
> > wallet
> > out
> > >of his pocket.  "They found this on Mark when he was killed. We
> thought
> > you
> > >might recognize it."
> > >Opening the billfold, he carefully removed two worn pieces of
> > >notebook paper that had obviously been taped, folded and refolded
> many
> > times.
> > >I knew without looking that the papers were the ones on which
> > >I had listed all the good things each of Mark's classmates had
> said
> > >about him.  "Thank you so much for doing that," Mark's mother
> said.
> "As
> > you
> > >can see, Mark treasured it."
> > >Mark's classmates started to gather around us.  Charlie smiled
> > >rather sheepishly and said, "I still have my list.  It's in the top
>
> > drawer of
> > >my desk at home." Chuck's wife said, "Chuck asked me to put his in
> our
> > wedding
> > >album."  "I have mine too," Marilyn said.  "It's in my diary."
> Then
> > Vicki,
> > >another classmate, reached into her pocketbook,
> > >took out her wallet and showed her worn and frazzled list to the
> group.
> > "I
> > >carry this with me at all times," Vicki said without batting an
> eyelash.
> > "I
> > >think we all saved our lists."
> > >That's when I finally sat down and cried.  I cried for Mark and for
>
> all
> > his
> > >friends who would never see him again.
> > >
> > >
> > >THE END
> > >
> > >>>>       Written by:  Sister Helen P. Mrosla
> > >The purpose of this letter is to encourage everyone to
> > >compliment the people you love and care about.  We often tend to
> forget
> > the
> > >importance  of showing our affections and love.  Sometimes the
> > >smallest of things, could  mean the most to another.  I am asking
> you, to
> > >please send this letter around and spread the message and
> encouragement,
> > to
> > >express your love and caring by complimenting and being open with
> > >communication.  The density of  people in society is so thick that
> we
> > forget
> > >that life will end one day.   And we don't know when that one day
> will
> > be.
> >  So
> > >please, I beg of you, to tell the people you love and care for,
> that
> they
> > are
> > >special  and important.  Tell them, before it is too late.
> > >Within 1 hour you must send it to other people.
> > > Within five days you will have a miraculous occurrence in
> > > your relationships. You may find new love or have an old love
> rekindled.
> > >
> > >
> > >If you do not send it, you will have, once again passed up the
> > >opportunity to do something loving and beautiful and continue
> > >the trend that gives you problems in your relationships.
> > >
> > >If you've received this it is because someone cares for you and
> > >it means there is probably at least someone for whom you care.
> > >
> > >If you're too busy to take the few minutes that it would take
> > >right now  to forward this to ten people, would it be the first
> time
> > >you didn't do that little thing that would make a difference in
> > >your relationships?
> > >
> > >The more people that you send this to, the better luck you will
>      > >have.  And the better you'll get at reaching out to those you
> care
>      about.
> ---------------------------------- Forwarded
>
=========================================================================
Date:         Wed, 11 Nov 1998 04:12:31 -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:         Elizabeth de Silva <lizsilva@SRV1.TELCONET.NET>
Subject:      Re: surgery
MIME-Version: 1.0
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So glad to know that Jordan's surgery was okay and that he is at home.  We hope he
will be feeling better soon.

Warm regards,

Elizabeth and Albita
=========================================================================
Date:         Tue, 10 Nov 1998 13:47:32 -0800
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Scott Pengelly <scottp@EUGENE.COM>
Subject:      All good wishes, Joanne: Scott
Comments: To: AOL User <MHTeach102@AOL.COM>
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"

Good afternoon, All:

Joanne:
All good wishes and good luck.
You are in my prayers. I look
forward to hearing you good
news.
All the best,
Scott
=========================================================================
Date:         Thu, 10 Sep 1998 05:04:00 -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:         Andrea Gartner <agartner@PEGANET.NET>
Subject:      Re: surgery
MIME-Version: 1.0
Content-Type: text/plain; charset=ISO-8859-1
Content-Transfer-Encoding: 7bit

Im glad to here Jordan had a successful surgery and is back home.  I hope
he has a speedy relaxing recovery.

As for Snow, that's that white, cold stuff up north right.  !>).  Something
I do not want to go back too.  (Ok.  I only miss it during Christmas.)

-Andrea
=========================================================================
Date:         Tue, 10 Nov 1998 20:53:18 EST
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         GSieb91515@AOL.COM
Subject:      Re: working at home
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
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Thanks Don for your sister's address.  This is something I've kept in the back
of my mind for awhile.  Also, thanks to everyone who wished me well with my
surgery.  They said it would be a piece of cake but I still feel like an
inflated balloon that needs to be popped.  I've never had the incredible pain
in my shoulders from anesthesia before.  I literally felt like I had been in a
car accident.  After the third day my shoulders finally stopped hurting but
the carbon dioxide still feels like it's in my diaphragm.  Enough of my pitty
party.  I guess the worse feeling was knowing I would not ever be having
anymore children.  The finality of it all really was quite sad.

Jenn--Hope Jordan did well with his surgery on the 9th and that the results
were what you hoped for.  Continued best wishes to Emily and Jacob in there
recovery process.  Those darn bandages are the worst of it for us.

Happy November birthdays to Roxy, Nicholas and Mar Mar.  Forgive me if I
missed anyone.  I've been a little behind with the list.

Best wishes to all!

Brenda
Houston
=========================================================================
Date:         Tue, 10 Nov 1998 20:57:13 EST
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         GSieb91515@AOL.COM
Mime-Version: 1.0
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Content-transfer-encoding: 7bit

Karen--

We haven't had much need for hats in Texas due to the cold so far, but
Jonathan is very light sensitive so I try to keep a hat with a bill for him.
I have to buy the large children's size and they still look funny on him with
his ears sticking out.  I did find a stocking cap type for this winter.  You
can fold up the extra if it's too big.  I think this will work fine if he will
keep it on.

Glad to hear Billy's sleep study went so well.

Brenda
=========================================================================
Date:         Wed, 11 Nov 1998 00:36:36 EST
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         NephiRose@AOL.COM
Subject:      Insurance Woes
Mime-Version: 1.0
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Anybody here self-employed?

Some days ago, I butted heads with the people from insurance.  We are on COBRA
plan.  I switched over to that when I quit work.  I realized at that time that
caring for Sarah would take up more time than I realized with all the therapy.
But ever since I switched over to the COBRA administration, my insurance
consistantly tried to kick us off for one reason or another.  The last time I
got so mad that I bawled my head off in frustration.  I told my husband flat-
out that we needed to find another way to take care of Sarah's needs.  Self-
employed  is wonderful, but the insurance payments are killing us.  When COBRA
runs out in June, they will jack the payments up to $1000.00 a month.   (We
been down this road before.)  Any feed back on insurance issues.

Plus, Bill is now looking for work in his field.  He has applied for a
position in Missouri and New Mexico in deaf-related positions.  Keep us in
your prayers.  We are at our wits end.  If you hear of any positions in your
even remotely disability related could you let me know.

That's my pity party.  Brenda,  now that you mentioned it..the first two days
were a bit uncomfortable.  The carbon dioxide does get to you.  I felt I done
three thousand situps in 6 seconds.  And  yes there is a sad finality about
it.  I took me a while before I came to terms with it.  Now, I'm grateful I
did it.  But that is because it was just the right thing for me at the time.

Night all,

Belinda Vicars
(Utah)
=========================================================================
Date:         Wed, 11 Nov 1998 00:52:40 +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: Insurance Woes
In-Reply-To:  <6f70cc18.36492264@aol.com>
MIME-Version: 1.0
Content-type: text/plain; charset=US-ASCII
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> employed  is wonderful, but the insurance payments are killing us.  When COBRA
> runs out in June, they will jack the payments up to $1000.00 a month.   (We
> been down this road before.)  Any feed back on insurance issues.

   Have you looked into medical assistance?  You may find out that
the diagnosis of Apert syndrome makes Sarah eligible. That wouldn't
help the rest of the family much, but it would take care of the
biggest bills if she qualifies.

> Plus, Bill is now looking for work in his field.  He has applied for a
> position in Missouri and New Mexico in deaf-related positions.  Keep us in
> your prayers.  We are at our wits end.  If you hear of any positions in your
> even remotely disability related could you let me know.

Check out this web site:
http://www.yellowstar.com/DeafDigest/

   Ads in this week's newsletter are for jobs in Maryland, Arizona,
Indiana, California, and Wisconsin -- all are deaf-related and the
newletter is weekly by email.

Judy
Judy Gibson

jgibson2@erols.com
=========================================================================
Date:         Wed, 11 Nov 1998 03:43:06 -1000
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:         "Joana H. Magno, M.D." <magnomd@ALOHA.NET>
Subject:      Happy November Birthdays!
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit

Margaret is doing great!  She had her 5th birthday party at Chuck E
Cheese on Halloween day.  Her classmates from Honolulu Waldorf School
came and we had a wonderful party.  She was dressed up as Snow White,
which is the costume she selected when we went on our trip to Orlando
this summer.

Best wishes to all of our list members who have birthdays in November!

Our friends,  the Yenneys from Korea are up in Seattle again.  Sarah is
scheduled for hand surgery and ear tubes on Thursday,  Nov 12th.  They
are hoping to complete the hand surgeries before going back home in
January.

Aloha,

Joana
=========================================================================
Date:         Wed, 11 Nov 1998 12:32:37 EST
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         NephiRose@AOL.COM
Subject:      Re: Insurance Woes
Mime-Version: 1.0
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In a message dated 98-11-11 00:54:17 EST, you write:

<< Have you looked into medical assistance?  You may find out that
 the diagnosis of Apert syndrome makes Sarah eligible. That wouldn't
 help the rest of the family much, but it would take care of the
 biggest bills if she qualifies. >>
 

  I did, but here in Utah the benefits are not that wonderful.  Real
conservative state.    I'd much rather pay through the nose, than have her go
to lousy doctors.

Thanks for the info on Deaf Digest, appreciate it.
 

Belinda
=========================================================================
Date:         Wed, 11 Nov 1998 18:14:49 EST
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Yonstein@AOL.COM
Mime-Version: 1.0
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Content-transfer-encoding: 7bit

Hey Joanne

By the time I read my mail, you've already gone for your test.  Hope the
results were good ones.   Let us know.

Best wishes,

Janine
=========================================================================
Date:         Wed, 11 Nov 1998 18:26:03 EST
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Yonstein@AOL.COM
Subject:      Re: Surgery Letdown?
Mime-Version: 1.0
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Hello All:

I am having this feeling that I describe as surgery letdown and am wondering
if anyone else gets it.  It's almost like I can do everything that needs to be
done up until the surgery, all the pre-op stuff , all the blood tests, all the
running around.  We get through surgery, the hospital stay and here it is a
week later and I am feeling almost depressed.  Is this normal?

Let me also say that Emily came home last Thursday (first hand surgery) and
started throwing up on Saturday night and diarrhea since then.  She's hardly
eating anything.  I'm convinced she developed this virus in the hospital.  So
I suppose this isn't helping my mood any.  Oh, well.

Also, I have a question about the skin graft site.  Is there anything I should
be doing to it now that the bandage is off it?  It looks like it really hurts,
although she is not complaining about it.

Thanks for the venting and the info.

Hope all is well.

Janine
=========================================================================
Date:         Wed, 11 Nov 1998 18:36:15 EST
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Nodrmat26@AOL.COM
Subject:      Re: Surgery Letdown?
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
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In a message dated 11/11/98 5:26:22 PM Central Standard Time, Yonstein@AOL.COM
writes:

<< Let me also say that Emily came home last Thursday (first hand surgery) and
 started throwing up on Saturday night and diarrhea since then.  She's hardly
 eating anything.  I'm convinced she developed this virus in the hospital.  So
 I suppose this isn't helping my mood any.  Oh, well.
  >>
Zoey's Mom here.  I'd have to say that after every surgery Zoey has gotten
sick.  I guess their immune system takes a hit after surgery or something.
Sometimes it takes a week for Zoey to get sick and sometimes a month, it just
depends.  Hang in there.
Christina
San Antonio
=========================================================================
Date:         Wed, 11 Nov 1998 20:49:19 EST
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Jenngram@AOL.COM
Subject:      Re: Surgery Letdown?
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
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Janine,

Don't you know once again Jordan developed a cold after his surgery
Monday.....So now, wea re not only dealing w/ a splint, pain, general
uncomfyness, sleep deprevation....and now a congested nose!!!!! I am suffering
form the post-op blues as well!!!!

Who wouldn't be depressed!!!!

Jordans groin sites/donor sites, in the past, have been fine after a week.
Although I but a bit of lotion on the area just to keep in moist and pliable.
Nothing reccomended by a Dr., just my own thinking.

Cheer up....

Jenn(Tampa/St. Pete)
=========================================================================
Date:         Thu, 12 Nov 1998 11:21:56 +0800
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         "Rahiza Abdul Rahim." <rahizar@PNB.COM.MY>
Subject:      Questions
Mime-Version: 1.0
Content-Type: text/plain; charset=US-ASCII

Hello, I'm Rahiza  mother to Atikah ( 4 month old baby  born with Apert
Syndromme). Few questions that I would like to ask.
1. Recently my daughter was seen by Dr. David David from Australia (
visiting doctor to one of the specialist centre in Malaysia). He suggested
an early surgical  intervention . Their approach between the age of 3
months to 1 year they will do the cranial vault in order to provide room
for the brain to grow - to avoid retarded ( this need to be done in
Australia) . I've gain another opinion from the plastic and recionstructive
surgeon here whereby  in his opinion they may or may not be any operatrion
on the skull. For him I think they do the operation when it is necessary.
Dr David approach is more of a prevention kind of way.

From the MRI ( done when she's 3 month's old showed that there is fusion
two third of both coronol satures  but the sagital, lambdoid and squamosal
sutures are still open and there is no corpus callasum dysgenesis. Brain
stem and cerebellum appear mormal. So far the developmental growth appears
normal accept for recurrent frequent cold and bronchiotis.

Our family are quite anxious about this. Any opinion on this? Is there
anybody who under Dr. David ( Womens & Childrens Hospital Adelaide ). For
me if it's necessary and for the good of my daughter then I would proceed.
Please help me...

2. Before meeting Dr. David David we have already scheduled an operation to
released Atikah's finger  ( type 2) - operation on 25 Nov 98 but Dr. David
approach is the other way around it should be done later ..  My concern is,
the earlier it to be done the better so that she can manipulate her
fingers. Any opinion on this?...

3. Cranial Advancement does it need to be done repeatedly or one is enough
?

4. Atikah have a narrow nassal passage due to high arch pallete which make
it difficult for her to breath when she's having cold or something . The
ENT specialist  doesn't want to do any operation on it yet and currently
he's doing the nasal dilation using hexa dilator which is very painful
because he pushes the dilator inside the nose and blood coming out from the
nose b'coz  of the force. came to think of it , I really pity her and I
don't  want her to go through all that but it's for her own good ( hope I'm
right). The procedure need to be done weekly ( I guess untill the dr.
satisfy).  I request for an operation to remove the adenoid or something,
the dr. says she's too small and they are afraid of internal bleeding.
Which make me have second thoughts of having it done here.
Under Dr. David's package will include skull, nose and ear (to put ear
tube's if it is necessary)
 

Hope to get a reply on this. Sorry for making it too long

Thanks.

-rahiza-
=========================================================================
Date:         Wed, 11 Nov 1998 22:56:57 +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:         "J. G. Lindamood" <chanan8@JUNO.COM>

Hello!

GOOD NEWS!  GOOD NEWS!

I received a clean bill of health today from my pulmonary doctor.  Whew!
I saw the CT Scan myself and the spot is gone!  He said we would never
know what it was.  I know what it was..it's my proof that the power of
prayer works!

Joanne, cold, WINDY, no snow!
=========================================================================
Date:         Wed, 11 Nov 1998 23:14:05 +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:         "J. G. Lindamood" <chanan8@JUNO.COM>
Subject:      Re: Surgery Letdown?

Hey again..

it just so happened my step mom and I had a similar conversation this
past weekend.  We are both feeling the "Boo" "Hiss" mood these days and I
told her I thought we were finally feeling the let down after this
stressful year.  It's like your adrenaline keeps you going to do what's
necessary and if it's a constant adrenaline trip, it becomes "the norm"
and it's hard to come back to what was previously normal without feeling
depressed or let down.  Am I making sense?

If it's any consolation, I was sick too after my gall bladder surgery
(and all the others I remember for that matter).  The nurse told me it
was a normal reaction to the anesthesia?

Can't help with the skin graft. Sorry.
=========================================================================
Date:         Wed, 11 Nov 1998 22:41:11 -0600
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         "Allison's : GO USA, Inc" <gousa@KC.NET>
Subject:      Re: Questions
In-Reply-To:  <482566BA.00081CE7.00@pnbit_pnb.pnb.com.my>
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"

Dear Rahiza,

Following I will give my views on your concerns.  You will most likely get
several replies, so you can read them and use them to make decisions which
are best for your child.

Other people are always encouraged to send their replies, even if they
differ from my points.

>1. Recently my daughter was seen by Dr. David David from Australia (
>visiting doctor to one of the specialist centre in Malaysia). He suggested
>an early surgical  intervention . Their approach between the age of 3
>months to 1 year they will do the cranial vault in order to provide room
>for the brain to grow - to avoid retarded ( this need to be done in
>Australia) . I've gain another opinion from the plastic and recionstructive
>surgeon here whereby  in his opinion they may or may not be any operatrion
>on the skull. For him I think they do the operation when it is necessary.
>Dr David approach is more of a prevention kind of way.

It is my belief, here in the United States, that the more aggressive care
is generally given.   The first cranial surgery would normally be done
during the 3 months to 1 year time periods, with 5 to 6 months being what I
am used to seeing.  Usually there are large "open" spots in the skull which
need to be dealt with, along with other complications.  Some cranial
formations do not have these large open spots however, I believe.  I think
the more aggressive care would be given in these situations also, but I
have no direct experience on that part.

>
>>From the MRI ( done when she's 3 month's old showed that there is fusion
>two third of both coronol satures  but the sagital, lambdoid and squamosal
>sutures are still open and there is no corpus callasum dysgenesis. Brain
>stem and cerebellum appear mormal. So far the developmental growth appears
>normal accept for recurrent frequent cold and bronchiotis.

Sorry, I am not well versed on these medical terms.

>Our family are quite anxious about this. Any opinion on this? Is there
>anybody who under Dr. David ( Womens & Childrens Hospital Adelaide ). For
>me if it's necessary and for the good of my daughter then I would proceed.
>Please help me...

I can not make these decisions for you, but hope to shed light on what is
normally practiced here in the U.S.

>2. Before meeting Dr. David David we have already scheduled an operation to
>released Atikah's finger  ( type 2) - operation on 25 Nov 98 but Dr. David
>approach is the other way around it should be done later ..  My concern is,
>the earlier it to be done the better so that she can manipulate her
>fingers. Any opinion on this?...

It is my understanding that the fingers, if released before age 4 to 5
years old will be able to be manipulated individually.  The problem with
releasing them a lot later in life, is the brain will not be able to
identify, and move them separately.  The cranial surgeries, if necessary,
and I would guess they are, will take care of the more immediate, life
threatening problems.

>3. Cranial Advancement does it need to be done repeatedly or one is enough
>?

We have had 2 cranial surgeries, (approx 5 months and again at 4 years) and
expect a mid-face advancement at around 4 and one half years. I would think
this scenario is common.

>4. Atikah have a narrow nassal passage due to high arch pallete which make
>it difficult for her to breath when she's having cold or something . The
>ENT specialist  doesn't want to do any operation on it yet and currently
>he's doing the nasal dilation using hexa dilator which is very painful
>because he pushes the dilator inside the nose and blood coming out from the
>nose b'coz  of the force. came to think of it , I really pity her and I
>don't  want her to go through all that but it's for her own good ( hope I'm
>right). The procedure need to be done weekly ( I guess untill the dr.
>satisfy).  I request for an operation to remove the adenoid or something,
>the dr. says she's too small and they are afraid of internal bleeding.
>Which make me have second thoughts of having it done here.
>Under Dr. David's package will include skull, nose and ear (to put ear
>tube's if it is necessary)

Our son had his adenoids and tonsils removed, which made a great
improvement for his breathing.  He had the most trouble at night sleeping,
as he would stop breathing for short periods of time. (obstructive apnea)
These periods of apnea increased if he had a cold.  It was so bad we
sometimes would put him in the hospital during a common cold, because he
could not breath.  This could get worse, if left untreated!  I believe
taking out the tonsil and adenoids generally would make a big difference on
helping breathing problems.  I will add that the recovery was no fun, since
there was swelling, due to the surgery, in the breathing area that was
already small.  It has made all the difference in the world.  Now left
un-treated, if we did not follow through with the mid face advancement, as
he grows, we could experience further closing of the breathing areas.

It is even hard here in the U.S. to convince unexperienced Doctors to
remove the tonsils and adenoids.  The more experienced Doctors probably
realize the importance of breathing and know the benefits of doing the T&A
procedure for children with Aperts.

>Hope to get a reply on this. Sorry for making it too long

You did not make it too long. It is nice to have a concerned parent that is
to seeking advice.

I hope I answered some of your questions.  These views are only my opinion
and belief.  Hopefully you will not have to go only by what I say, but take
into consideration a lot of people who will write in with their
experiences.  If possible, try to investigate other medical professionals
who might have experience treating this syndrome.  If you are able to come
to the United States, there are several Dr's that I am sure a lot of people
on this List Serve could recommend.
 

Best Regards,

Mike Allison
mike@gousainc.com
=========================================================================
Date:         Wed, 12 Nov 2098 22:00:03 +1100
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:         Chris Wood <cwsjw@SMART.NET.AU>
Subject:      Re: Questions
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Dear Rahiza

My name is Sylvia I have a 5 year old daughter with Apert Syndrome.  We
live in Australia but my daughter goes to the Royal children's Hospital in
Melbourne.  I thought I would let you know our story as the doctors who see
Emma could be following similar procedures to those in doctors in Adelaide.
I'm just letting you know what our experiences have been, of course the
type of surgery/treatment varies with each individual child.

----------
> From: Rahiza Abdul Rahim. <rahizar@PNB.COM.MY>
> To: APERT@LISTSERV.AOL.COM
> Subject: Questions
> Date: Thursday, November 12, 1998 2:21 PM
>
> Hello, I'm Rahiza  mother to Atikah ( 4 month old baby  born with Apert
> Syndromme). Few questions that I would like to ask.
> 1. Recently my daughter was seen by Dr. David David from Australia (
> visiting doctor to one of the specialist centre in Malaysia). He
suggested
> an early surgical  intervention . Their approach between the age of 3
> months to 1 year they will do the cranial vault in order to provide room
> for the brain to grow - to avoid retarded ( this need to be done in
> Australia) . I've gain another opinion from the plastic and
recionstructive
> surgeon here whereby  in his opinion they may or may not be any
operatrion
> on the skull. For him I think they do the operation when it is necessary.
> Dr David approach is more of a prevention kind of way.
>
> From the MRI ( done when she's 3 month's old showed that there is fusion
> two third of both coronol satures  but the sagital, lambdoid and
squamosal
> sutures are still open and there is no corpus callasum dysgenesis. Brain
> stem and cerebellum appear mormal. So far the developmental growth
appears
> normal accept for recurrent frequent cold and bronchiotis.
>
> Our family are quite anxious about this. Any opinion on this? Is there
> anybody who under Dr. David ( Womens & Childrens Hospital Adelaide ). For
> me if it's necessary and for the good of my daughter then I would
proceed.
> Please help me...
>
Emma had her first cranial surgery at 9 months which was done to allow her
brain to grow as well as bringing the forehead forward by 3 centimetres to
give some protection to the eyes.  Emma has no corpus collosum. She will
require a midface advancement but the doctors here prefer to do this no
earlier than about the age of eight.  The reason for this is to try and
minimise the number of operations.

> 2. Before meeting Dr. David David we have already scheduled an operation
to
> released Atikah's finger  ( type 2) - operation on 25 Nov 98 but Dr.
David
> approach is the other way around it should be done later ..  My concern
is,
> the earlier it to be done the better so that she can manipulate her
> fingers. Any opinion on this?...

Emma was 13 months old when she had her first bilateral syndactly release
of the 2nd and 5th digits on both hands.  She had tubes put in her ears at
the same time. At 16 months she had her 3rd and 4th digits done. She did
have some problems with skin grafts but eventually her fingers healed well
and she makes very good use of all her fingers. She recently had her thumb
straightened which involved cutting a section of bone and as I understand
it the surgeons do not like to do this too soon as the bones are small and
fragile and could shatter.
>
> 3. Cranial Advancement does it need to be done repeatedly or one is eno
>
Again I believe the number of operations depends on the timing of the
surgery but also on the state of health of each individual child.

> 4. Atikah have a narrow nassal passage due to high arch pallete which
make
> it difficult for her to breath when she's having cold or something . The
> ENT specialist  doesn't want to do any operation on it yet and currently
> he's doing the nasal dilation using hexa dilator which is very painful
> because he pushes the dilator inside the nose and blood coming out from
the
> nose b'coz  of the force. came to think of it , I really pity her and I
> don't  want her to go through all that but it's for her own good ( hope
I'm
> right). The procedure need to be done weekly ( I guess untill the dr.
> satisfy).  I request for an operation to remove the adenoid or something,
> the dr. says she's too small and they are afraid of internal bleeding.
> Which make me have second thoughts of having it done here.
> Under Dr. David's package will include skull, nose and ear (to put ear
> tube's if it is necessary)
>
>Emma also has breathing problems but the extent of the problem was not
obvious until she came down with a very bad case of pneumonia which
culminated with an upper respiratory obstruction.  She was 3 years old at
the time and they immediately removed her tonsils and adenoids. Her
breathing problems continued and she has had two nasal dilatations but not
on a weekly basis. Emma had some tests done and it was found her breathing
rate drops considerably during sleep, as a consequence of this she now
sleeps with a mask which pumps air into her lungs and also keeps her
airways open.  It is thought at this stage that she will continue to have
this until her midface advancement is performed.

> Hope to get a reply on this. Sorry for making it too long
>
> Thanks.
> Well, I hope I haven't given you too much information but I do hope it
may be useful.  As Mike Allison has said in his reply these are our
personal experiences every one has a different point of view.  The type of
procedures followed depends on the child as well as the health
proffessionls you encounter. It's very difficult in the early stages to
deal with all the information that is thrown at you it becomes
overwhelming. Wishing you all the best for Atikah.  With kind regards
Sylvia Wood. > -rahiza-
=========================================================================
Date:         Thu, 12 Nov 1998 12:02:10 EST
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Jenngram@AOL.COM
Subject:      Fwd:miracle
Mime-Version: 1.0
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This is a multi-part message in MIME format.

--part0_910890131_boundary
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Content-type: text/plain; charset=US-ASCII
 
 

<< >Hi all!
 > >I received this e-mail and thought I'd pass it along...
 > >
 > >>THE MIRACLE
 > >>From Woman's Day Magazine:
 > >>
 > >>Like any good mother, when Karen
 > >>found out that another baby was on
 > >>the way, she did what she could to
 > >>help her 3-year-old son, Michael,
 > >>prepare for a new sibling. They found
 > >>out that the new baby was going to
 > >>be a girl, and day after day, night
 > >>after night, Michael sang to his sister
 > >>in Mommy's tummy. He was building
 > >>a bond of love with his little sister
 > >>before he even met her. The pregnancy
 > >>progressed normally for Karen, an active
 > >>member of the Panther Creek United
 > >>Methodist Church in Morristown, Tennessee.
 > >>In time, the labor pains came. Soon it
 > >>was every five minutes ... every three ... every minute.
 > >>
 > >>But serious complications arose during
 > >>delivery and Karen found herself in hours
 > >>of labor. Would a C-section be required?
 > >>
 > >>Finally, after a long struggle, Michael's
 > >>little sister was born. But she was in very
 > >>serious condition. With a siren howling in
 > >>the night, the ambulance rushed the infant
 > >>to the neonatal intensive care unit at
 > >>St. Mary's Hospital, Knoxville, Tennessee.
 > >>
 > >>The days inched by. The little girl got worse.
 > >>The pediatric specialist regretfully had to
 > >>tell the parents, "There is very little hope.
 > >>Be prepared for the worst." Karen and her
 > >>husband contacted a local cemetery about
 > >>a burial plot. They had fixed up a special
 > >>room in their home for the new baby, but
 > >>now they found themselves having to plan
 > >>for a funeral.
 > >>
 > >>Michael, however, kept begging his parents
 > >>to let him see his sister. "I want to sing to
 > >>her," he kept saying. Week two in intensive
 > >>care looked as if a funeral would come before
 > >>the week was over.  Michael kept nagging
 > >>about singing to his sister, but kids are
 > >>never allowed in Intensive Care. Karen made
 > >>up her mind, though. She would take Michael
 > >>whether they liked it or not! If he didn't see
 > >>his sister right then, he may never see her
 > >>alive. She dressed him in an oversized scrub
 > >>suit and marched him into ICU. He looked like
 > >>a walking laundry basket. But the head nurse
 > >>recognized him as a child and bellowed,
 > >>"Get that kid out of here now!
 > >>No children are allowed."
 > >>
 > >>The mother rose up strong in Karen, and
 > >>the usually mild-mannered lady glared
 > >>steel-eyed right into the head nurse's face,
 > >>her lips a firm line. "He is not leaving until he
 > >>sings to his sister!" Karen towed Michael to
 > >>his sister's bedside.  He gazed at the tiny
 > >>infant losing the battle to live. After a
 > >>moment, he began to sing. In the purehearted
 > >>voice of a 3-year-old, Michael sang:
 > >>"You are my sunshine,  my only sunshine,
 > >>you make me happy when skies are gray---"
 > >>
 > >>Instantly the baby girl seemed to respond.
 > >>Her pulse rate began to calm down and
 > >>become steady. "Keep on singing, Michael,"
 > >>encouraged Karen with tears in her eyes.
 > >>"You never know, dear, how much I love you,
 > >>Please don't take my sunshine away-"
 > >>As Michael sang to his sister, the baby's
 > >>ragged, strained breathing became as
 > >>smooth as a kitten's purr. "Keep on singing,
 > >>sweetheart!!!."  "The other night, dear, as I lay
 > >>sleeping, I dreamed I held you in my arms..."
 > >>
 > >>Michael's little sister began to relax as rest,
 > >>healing rest, seemed to sweep over her.
 > >>"Keep on singing, Michael." Tears had now
 > >>conquered the face of the bossy head nurse.
 > >>Karen glowed. "You are my sunshine, my only
 > >>sunshine. Please don't, take my sunshine away..."
 > >>
 > >>The next, day...the very next day...the little
 > >>girl was well enough to go home! Woman's Day
 > >>Magazine called it  "The Miracle of a Brother's
 > >>Song."  The medical staff just called it a miracle.
 > >>Karen called it a miracle of God's love!
 > >>
 > >>NEVER GIVE UP ON THE PEOPLE YOU LOVE.
 > >>LOVE IS SO INCREDIBLY POWERFUL.
 > >>Please send this to all the people that have
 > >>touched your life in some way.
 > >> >>
 

Get out the hanky for this one!!

Jenn

>
>
> >Hi all!
> >I received this e-mail and thought I'd pass it along...
> >
> >>THE MIRACLE
> >>From Woman's Day Magazine:
> >>
> >>Like any good mother, when Karen
> >>found out that another baby was on
> >>the way, she did what she could to
> >>help her 3-year-old son, Michael,
> >>prepare for a new sibling. They found
> >>out that the new baby was going to
> >>be a girl, and day after day, night
> >>after night, Michael sang to his sister
> >>in Mommy's tummy. He was building
> >>a bond of love with his little sister
> >>before he even met her. The pregnancy
> >>progressed normally for Karen, an active
> >>member of the Panther Creek United
> >>Methodist Church in Morristown, Tennessee.
> >>In time, the labor pains came. Soon it
> >>was every five minutes ... every three ... every minute.
> >>
> >>But serious complications arose during
> >>delivery and Karen found herself in hours
> >>of labor. Would a C-section be required?
> >>
> >>Finally, after a long struggle, Michael's
> >>little sister was born. But she was in very
> >>serious condition. With a siren howling in
> >>the night, the ambulance rushed the infant
> >>to the neonatal intensive care unit at
> >>St. Mary's Hospital, Knoxville, Tennessee.
> >>
> >>The days inched by. The little girl got worse.
> >>The pediatric specialist regretfully had to
> >>tell the parents, "There is very little hope.
> >>Be prepared for the worst." Karen and her
> >>husband contacted a local cemetery about
> >>a burial plot. They had fixed up a special
> >>room in their home for the new baby, but
> >>now they found themselves having to plan
> >>for a funeral.
> >>
> >>Michael, however, kept begging his parents
> >>to let him see his sister. "I want to sing to
> >>her," he kept saying. Week two in intensive
> >>care looked as if a funeral would come before
> >>the week was over.  Michael kept nagging
> >>about singing to his sister, but kids are
> >>never allowed in Intensive Care. Karen made
> >>up her mind, though. She would take Michael
> >>whether they liked it or not! If he didn't see
> >>his sister right then, he may never see her
> >>alive. She dressed him in an oversized scrub
> >>suit and marched him into ICU. He looked like
> >>a walking laundry basket. But the head nurse
> >>recognized him as a child and bellowed,
> >>"Get that kid out of here now!
> >>No children are allowed."
> >>
> >>The mother rose up strong in Karen, and
> >>the usually mild-mannered lady glared
> >>steel-eyed right into the head nurse's face,
> >>her lips a firm line. "He is not leaving until he
> >>sings to his sister!" Karen towed Michael to
> >>his sister's bedside.  He gazed at the tiny
> >>infant losing the battle to live. After a
> >>moment, he began to sing. In the purehearted
> >>voice of a 3-year-old, Michael sang:
> >>"You are my sunshine,  my only sunshine,
> >>you make me happy when skies are gray---"
> >>
> >>Instantly the baby girl seemed to respond.
> >>Her pulse rate began to calm down and
> >>become steady. "Keep on singing, Michael,"
> >>encouraged Karen with tears in her eyes.
> >>"You never know, dear, how much I love you,
> >>Please don't take my sunshine away-"
> >>As Michael sang to his sister, the baby's
> >>ragged, strained breathing became as
> >>smooth as a kitten's purr. "Keep on singing,
> >>sweetheart!!!."  "The other night, dear, as I lay
> >>sleeping, I dreamed I held you in my arms..."
> >>
> >>Michael's little sister began to relax as rest,
> >>healing rest, seemed to sweep over her.
> >>"Keep on singing, Michael." Tears had now
> >>conquered the face of the bossy head nurse.
> >>Karen glowed. "You are my sunshine, my only
> >>sunshine. Please don't, take my sunshine away..."
> >>
> >>The next, day...the very next day...the little
> >>girl was well enough to go home! Woman's Day
> >>Magazine called it  "The Miracle of a Brother's
> >>Song."  The medical staff just called it a miracle.
> >>Karen called it a miracle of God's love!
> >>
> >>NEVER GIVE UP ON THE PEOPLE YOU LOVE.
> >>LOVE IS SO INCREDIBLY POWERFUL.
> >>Please send this to all the people that have
> >>touched your life in some way.
> >>
> >
> >Steve
>
=========================================================================
Date:         Thu, 12 Nov 1998 13:26:48 -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:         Richard Thornquist <rlthorn@EARTHLINK.NET>
Subject:      Re: Surgery Letdown?
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit

Yonstein@AOL.COM wrote:
>
> Hello All:
>
> I am having this feeling that I describe as surgery letdown and am wondering
> if anyone else gets it.  It's almost like I can do everything that needs to be
> done up until the surgery, all the pre-op stuff , all the blood tests, all the
> running around.  We get through surgery, the hospital stay and here it is a
> week later and I am feeling almost depressed.  Is this normal?
>
> Let me also say that Emily came home last Thursday (first hand surgery) and
> started throwing up on Saturday night and diarrhea since then.  She's hardly
> eating anything.  I'm convinced she developed this virus in the hospital.  So
> I suppose this isn't helping my mood any.  Oh, well.
>
> Also, I have a question about the skin graft site.  Is there anything I should
> be doing to it now that the bandage is off it?  It looks like it really hurts,
> although she is not complaining about it.
>
> Thanks for the venting and the info.
>
> Hope all is well.
>
> Janine

Janine,

What do you mean the bandage is off of it.  I'm assuming the graft site
is on her abdomen.  When Andrew had his hand surgeries, they also took
skin from the same place.  There were butterfly stitches to keep the
skin together and then there was a piece of sticky tape over the whole
site.  We were not able to bathe Andrew, except for sponge baths.  We
were not to pull the tape off, and said that the tape would fall off on
its own, and at that time, the graft site would be healed.  If all you
are seeing is butterfly stitches, then, yes, something should be
covering the whole site for at least 10-14 days.

As far as the throwing up and diarhea (sp.), I am clueless.  The only
feelings I was feeling was sympathy for Andrew, because he had two casts
on up to his shoulders and was completely frustrated.  But trust me he
adapted quite quickly.

Just hold in there, everything will get better.

Lynn
=========================================================================
Date:         Thu, 12 Nov 1998 16:47:02 EST
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Nodrmat26@AOL.COM
Subject:      Re: Surgery Letdown?
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit

In a message dated 11/11/98 7:49:46 PM Central Standard Time, Jenngram@AOL.COM
writes:
<< ordans groin sites/donor sites, in the past, have been fine after a week.
 Although I but a bit of lotion on the area just to keep in moist and pliable.
 Nothing reccomended by a Dr., just my own thinking. >>
Zoey's Mom here.  I've heard that Cocoa Butter and/or Vitamin E helps those
sites.
Christina
San Antonio
=========================================================================
Date:         Thu, 12 Nov 1998 14:56:40 -0800
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Scott Pengelly <scottp@EUGENE.COM>
Subject:      Good going, Joanne: Scott
Comments: To: AOL User <MHTeach102@AOL.COM>
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"

Good afternoon/evening, Joanne:

Good going and congratulations
on your successful news. Glad
to hear the wonderful results.
All the best,
Scott
=========================================================================
Date:         Thu, 12 Nov 1998 18:33:00 -0500
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         baconsmith <bluenose@TELUSPLANET.NET>
Subject:      Re: Surgery Letdown?
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"

Dear Janine, Brenda, Jenn and others
I have to agree that there are a few days following discharge -- maybe even
a week or so later --- that I find myself restless and without the ability
to concentrate.  I don't know that I call it depression, but it is a
different state of mind, that's for sure.  I have to beleive that its the
pendulum swinging the other direction.  We've been wound up so to speak in
anticipation of the surgery and especially this last one where our prep was
all summer long with the expansion.  After recovery and the kid's mostly
healed I wonder what now?

This time tho' I didn't have to solve that problem.  I dug into my piled up
sewing like a woman posessed and have been catching up on stuff in my
project pile ever since.

Still, I am familiar with the feeling you describe.

Hope everyone is recovering nicely.

BTW  Sara's folks:  have you got hte videotape?  Just wondering what your
reactions were.

Anyone would like to have a peek at my little sweetie's most recent
procedure go to

www.widesmiles.org/gallery/peach/tissue.htm

Take care all!
Pat in Calgary  mom to EvaJessie  (Tessier 4/? facial cleft)
email to: bluenose@telusplanet.net
IM: onlypeach
www.widesmiles.org/gallery/peach/
One cannot kill time without injuring eternity.  HD Thoreau  Civil Disobedience
=========================================================================
Date:         Fri, 13 Nov 1998 13:02:27 +1300
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: Surgery Letdown?
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"

Kia ora Janine

>I am having this feeling that I describe as surgery letdown and am wondering
>if anyone else gets it.  It's almost like I can do everything that needs to be
>done up until the surgery, all the pre-op stuff , all the blood tests, all the
>running around.  We get through surgery, the hospital stay and here it is a
>week later and I am feeling almost depressed.  Is this normal?

Everyone has their own reaction, but this is certainly NOT unusual and really is to be expected.  I don't get "depressed", I just want to stay home and nurture our wee family and not talk to anyone else.

Take care
Ann
NZ
=========================================================================
Date:         Thu, 12 Nov 1998 21:07:15 -0500
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         foster <foster@ICONTECH.COM>
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"

Joanne- Great to hear that your scan was clear. You deserve a break and this
may be the start of many good things to come .

Glad to hear that Jordan is home and doing well.
 

Joana- Sounds like Mar Mar had a great birthday. We are keeping Sarah in our
thoughts and prayers today. It seems funny that today we received a new
photo of Sarah and a little note about her surgery being done. It was a nice
suprise to get  another picture of her. I still think that she and Mar Mar
look like sisters.
 

Pat- I checked out the pictures of Eva Jessie and went back to her earlier
pictures and it is amazing how far she has come in such a short time ( it
probably feels like a life time to you). I can't wait to see the next
pictures. She is inspiring child and you must be very proud.
 

Hope everyone else is well and starting to get the holiday spirit. There is
nothing like seeing your childrens faces on Christmas to warm your heart.
The credit card bills after are another story.

Billy is doing well and is finally walking all over the place. He has an
appointment with his cranial doctor for a checkup tomorrow and hopefully
that will go well.
 

Karen(PA)
=========================================================================
Date:         Fri, 13 Nov 1998 00:31:02 -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:         Charles LeCara <cal@PHOENIX.NET>
Subject:      Re: Surgery Letdown?
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding:  quoted-printable

After Sarah's two hand surgery's Neosporin has been very effective no =
infection... and both the donor site and the hands have healed very =
fast..

-----Original Message-----
From:   Nodrmat26@AOL.COM [SMTP:Nodrmat26@AOL.COM]
Sent:   Thursday, November 12, 1998 3:47 PM
To:     APERT@LISTSERV.AOL.COM
Subject:        Re: Surgery Letdown?

In a message dated 11/11/98 7:49:46 PM Central Standard Time, =
Jenngram@AOL.COM
writes:
<< ordans groin sites/donor sites, in the past, have been fine after a =
week.
 Although I but a bit of lotion on the area just to keep in moist and =
pliable.
 Nothing reccomended by a Dr., just my own thinking. >>
Zoey's Mom here.  I've heard that Cocoa Butter and/or Vitamin E helps =
those
sites.
Christina
San Antonio
=========================================================================
Date:         Fri, 13 Nov 1998 11:49:02 -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:         baconsmith <bluenose@TELUSPLANET.NET>
Subject:      EvaJessie
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Karen.  Thanks for your kind words.  Yes, I think she has come a long way.
She inspires me too.  And I couldn't be prouder of her.

Like the other kids on this list, she's got the right stuff.

Hope Billy is doing well now.

Take care all

Pat in Calgary
 

Pat- I checked out the pictures of Eva Jessie and went back to her earlier
pictures and it is amazing how far she has come in such a short time ( it
probably feels like a life time to you). I can't wait to see the next
pictures. She is inspiring child and you must be very proud.
email to: bluenose@telusplanet.net
IM: onlypeach
www.widesmiles.org/gallery/peach/
One cannot kill time without injuring eternity.  HD Thoreau  Civil Disobedience
=========================================================================
Date:         Fri, 13 Nov 1998 11:59:24 -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:         Ryan Bradley <Bradleys_r@COMPUSERVE.COM>
Subject:      Thank you and an update
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Bonnie;

Congratulations to Beth. I am glad Oliver is coming home.
Our prayers are with you.

The Bradley's
Algonquin, IL
=========================================================================
Date:         Fri, 13 Nov 1998 13:48:34 EST
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
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              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         NephiRose@AOL.COM
Subject:      Re: Circulation in the hands
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Hello all...

Sarah V. has been down in the dumps these past three days.  I'm not quite sure
what is the matter with her, a bug maybe?  She did throw up a bit yesterday,
but just only once.  The concern that I have and I'm wondering if anyone else
have noticed this with their child is circulation in the hands.

Lately, I've noticed the tips of Sarah V's hands turning a dark purple.  Once
was after a warm bath.  A bit concerned, I massaged her fingers back until
they became pink again.  This happened again a couple more times for no
apparent reason.  This is cold weather, but this has happened only inside the
house where it is warm.  She has complained more frequently that she has
"owies" in her fingers, enough to make her tearful.  Of course she is not
voicing it but she is signing it.  Just a bit concerned.

Anyone out there with experience on this issue?  BTW, it has happened on both
hands...the left had surgery when she was about 6 mos. old and the other just
last August.  So I don't really know if surgery plays a factor.  This "event"
just started the past month after she got bronchitis (sp?).

Belinda Vicars
(Utah)
=========================================================================
Date:         Fri, 13 Nov 1998 13:30:09 -0800
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Claudia Salazar <pcbaas@HOME.COM>
Organization: @Home Network
Subject:      Hello
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Hello Everyone,
        I wanted to introduce our daughter Allie, who is 8 years old and has
Pfeiffers Syndrome.  She was born with the "cloverleaf" shaped head and
severe eye proptosis.  We were not aware that anything was wrong until
her birth.  Having two older brothers who were perfectly healthy, the
thought never entered our minds. Besides, her birth was supposed to be a
joyous event, especially since we were grieving the loss of my mom who
had just passed away the week before. She was born c-section because she
was unable to deliver natually (of course, hind sight it was easy to
figure out why) and there was one moment of elation when the dr brought
her out bottom up and said its a girl, and when they brought the rest of
her out, SILENCE.  No cry, no words from anyone in the room, the drs.
and nurses just rushed her away because she couldnt breath. They just
showed us her for one moment.  I will never forget that moment when I
saw her and feared that she was going to die too.  I would say her birth
and that intial experience was one of the most painful experiences in my
life. It brings tears to my eyes just remembering how terrible it was.
Her prognosis was not very good in the beginning.  She was intubated
until her first surgery at 13 days old where they put in her trach,
sewed her eyelids together (they had to do this because her eyeballs
were coming out of the socket) and a few other little procedures.  I
remember being so happy because we got to see her little lips for the
first time and they were so cute, just perfect.  What a blessing!  The
next day she had her first cranioectomy. She was in the hospital for one
month before she was able to come home for the first time. As of now,
she has had more than 25 surgeries.  Have stopped counting, figure shes
had enough for 2-3 lifetimes already.  I guess I could really count them
up but its not that significant.  Im sure most of you have experienced
the shock and disbelief that something like this has happened to your
family, but I also pray that after the initial shock you have realized
the wonderful and beautiful gift you have received from God.  I would
not trade Allie for any child in the world.
        The first year was the most difficult, now pretty much a blur.  I
realized early on the most important gift I could give Allie was good
self-esteem and confidence.  I always dressed her up cute and when she
had stiches ear to ear and no hair, I taped a  matching bow on her head
just to let the world know my baby was beautiful and off we went.
Everywhere people would stare.  Oh well, not our problem.  People show
off their babies many ways.  With each surgery I would show off Allies
new head. =)  Never knew how much I had taken for granted, crawling,
eating, a voice, which we never heard until she was 10 months old.  I
dont take health for granted NOW.
        After countless therapies, dr. appts, surgery stays etc.  I am happy to
tell you Allie is now in regular 3rd grade, doing very well.  She is
very well accepted in our community and yes she is very confident with
good self esteem. =) Everyone who meets her, usually falls in love with
her.  The best sense of humor.  (Can you tell Im a proud mama?) I have
given many talks at her school to let the children know its OKAY to look
different, we are all the same inside. I show her baby book and explain
some of the surgeries. Never had a class who wasnt amazed.  Now, Allie
is at the age to speak her mind, "mom, not another Dr appointment, Id
rather play".  I just try to keep it fun for her.  I have always kept
her hair in a short doo, because of her trach and the many surgeries,
but she has wanted to let it grow and I have conceded.  Its so cute, she
is keeping up with the spice girl look and all those ponytails.  I love
seeing the doos she comes up with.
        Anyway, I look forward to hearing from some of you and I am very
fortunate to work in a hospital and am on a list and receive just about
all the latest medical articles about Pfeiffers, LeFort surgery and
other craniofacial info, so if anyone needs that type of info, I
probably have it.  Realized early on that we needed to be informed as
much as possible to be able to be a part of the decision making process
as to Allies medical treatment.  We have found that doctors treat you
just a little bit differently when you can speak in their terms and know
what you are talking about.  Most regular drs are not that familiar with
Pfeiffers syndrome and specifically the cloverleaf shape she had, so
usually we explain to them.  Allie is also hydocephalus and has a shunt,
if anyone has a question about that. Sorry I have rambled on so long,
but hope I can be of some help for someone who is having a rough time
with a particular surgery or dealing with this. Just take it day by day,
and I know sometimes even hour by hour and be thankful for the gift god
has shared with you.
Best Regards,
Claudia
=========================================================================
Date:         Fri, 13 Nov 1998 16:36:15 -0500
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Ryan Bradley <Bradleys_r@COMPUSERVE.COM>
Subject:      Questions
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Hi Rahiza:

Congratulations on your baby. We are the Bradley's and our daughter
Michelle is 7 years old (d.o.b.01/20/91) and has Aperts also.

Michelle had her cranial release when she was 6 weeks old to allow the
brain to grow and also help shape her skull symmetrically. At 9 months she
had another cranial release, her eye sockets and and forehead advancement
(sorry, we don't recall the technical terms). We were told in simple terms
that it was important for Michelle to have the cranial release early to
prevent damage to her brain as she grows.

Michelle's team is planning on a midface advancement when she is
approximately 12 years old.

Michelle's syndactly was a "tulip" type(hands cupped) with some bone
fusion. At 7 months she had her thumbs released, 13 months her pointer and
pinky finger and at 16 months her ramaining fingers.
As we understand the timing of this surgery depends on type of syndactly.
Based on our experience the earlier a child can start using their fingers
the better.

When Michelle was born we did not know anything about Aperts, and the
medical journals at that time did not have much current info for us, we had
to rely on trusting our doctors(we were blessed with very good ones).
Rahiza, in our opinion if Atikah's immediate health is not threatened you
have time to get opinions and make informed decisions. At the very least
you have the benefit of a lot of current information and many experiences
here on the Listserve. We hope we helped.

The Bradley's
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Date:         Fri, 13 Nov 1998 17:47:20 EST
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
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              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         NephiRose@AOL.COM
Subject:      Re: Hello
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In a message dated 98-11-13 16:32:05 EST, you write:

<< Pfeiffers Syndrome >>
 

My goodness.  I remember that syndrome.  When they did an ultrasound when I
was pregnant, they said that Sarah (my 2 year old) probably either has
Pfeiffers Syndrome or Aperts.  I did a lot of research on both.  Sarah for
your info has Aperts.

What doctors do you go to?  You like in the USA?

Belinda Vicars
=========================================================================
Date:         Fri, 13 Nov 1998 22:30:12 -0600
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              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
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From:         Laurie Bailey <jkb@ELPASO.NET>
Subject:      Jacob's post-op
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Hey all,

Just thought I'd put my two cents in about post-op blues. I too feel
something different about a week after surgery. Some of it is relief that
another one is under our belt. Some of it is sadness knowing that there are
many more left to come. Some of it is exhaustion.

We just went to Jacob's post-op appointment yesterday (Thursday). You would
think I would know what to expect by now seeing that it was Jake's third
digit release. But...

When Jacob had his thumbs released, I was very naive in thinking they were
going to be beautiful "normal" looking thumbs. Wrong. They were the ugliest
things I'd ever seen. They didn't look like thumbs at all. Well, I soon got
past those feelings, and as they healed, I began to see his thumbs for what
they are to him and what they will be in the future. When Jake had his
pinkies released, I expected the worst (from experience). Well, we got the
best. His pinkies looked awesome! They were straight and long and each had
a great looking nail. Things were definitely on the upswing. So, I went
into this last release expecting to see the same results from the pinky
release. I was totally let down and heartbroken. His fingers on his left
hand have more bone to work with than the right. Therefore, his index
finger on the left hand looks pretty good. His right hand, however, has
very short bones. The index finger on the right hand looks like a stump
right now. Both of the fingers have pins in them that are sticking out of
the end. The doctors said that in about 3 weeks they'll pull those out. All
I could do was cry right along with him when they took the bandages off.
Now I know it has only been 1 week post-op and his hands are still swollen.
But, that doesn't make it any easier on me when I look at my sweet little
boy and realize how much he is going through now and what he still needs to
go through in the future.

I'm sorry if I've rambled. My husband and I love each other very much but,
have different ways of dealing with things. He tends to keep his feelings
to himself and I need to get things off my chest and cry a little
sometimes. I'm really glad you all are here to be part of my support system
and sounding board.

Thanks for listening.

Laurie Bailey
jkb@elpaso.net
=========================================================================
Date:         Fri, 13 Nov 1998 21:41:03 -0800
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Claudia Salazar <pcbaas@HOME.COM>
Organization: @Home Network
Subject:      Re: Jacob's post-op
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Dear Laurie,
I thought after 25 surgeries or so it would get easier, but it doesnt.
Some are more involved and dangerous, but still it is difficult to see
your baby hurting one more time.  I think the only thing that gets us
through the big surgeries is prayer, family support and knowing that we
are doing the best for our daughter.  One of the last surgeries Allie
had I had to take her out of class to go to the hospital and she just
looked up at me