This poem was sent to me from another Apert mom, who is not on the
internet.  It was a great inspiration as a new mom.
Hope to spread some cheer.

Heaven's Very Special Child

A meeting was held quite far from earth
"Its time again for another birth,"
Said the Angels to the Lord above,
"This special child will need much love."
His progress may seem very slow
Accomplishments he may not show
And he'll require extra care
From the folks he meets way down there.
He may not run or laugh or play
His thoughts may seem quite far away
In many ways he won't adapt
And he'll be known as handicapped.
So let's be careful where he's sent
We want his life to be content
Please, Lord find the parents who
Will do a special job for you.
They will not realize right away
The leading role they're asked to play
But with this child sent from above
Come stronger faith and richer love.
And soon they'll know the privilege given
In caring for this gift from heaven
Their precious charge, so meek and mild,
Is heaven's very special child.

Mechelle Holt address:tholt@webtv.net
=========================================================================
Date:         Tue, 22 Dec 1998 13:08:34 -0800
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From:         "Pulido, Laura" <PulidoL@OR.CSMC.EDU>
Subject:      First Christmas in Heaven
MIME-Version: 1.0
Content-Type: text/plain

I read this poem and it reminded me of Ceci Kilner, BJ Harmon, Lizzie Dixon,
Joanne Lindamood's Grandma and Christine Clark's mom.  May they rest in
peace in God's love.
 

> My First Christmas In Heaven
>
>  I see the countless Christmas trees around the world below
>  With tiny lights, like Heaven's stars, reflecting on the snow
>  The sight is so spectacular, please wipe away the tear
>  For I am spending Christmas with Jesus Christ this year.
>  I hear the many Christmas songs that people hold so dear
>  But the sounds of music can't compare with the Christmas choir up
>  here.
>  I have no words to tell you, the joy their voices bring,
>  For it is beyond description, to hear the angels sing.
>  I know how much you miss me, I see the pain inside your heart
>  But I am not so far away, We really aren't apart.
>  So be happy for me, dear ones, You know I hold you dear.
>  And be glad I'm spending Christmas with Jesus Christ this year.
>  I sent you each a special gift, from my heavenly home above.
>  I sent you each a memory of my undying love.
>  After all, love is a gift more precious than pure gold.
>  It was always most important in the stories Jesus told.
>  Please love and keep each other, as my Father said to do.
>  For I can't count the blessing or love he has for each of you.
>  So have a Merry Christmas and wipe away that tear
>  Remember, I am spending Christmas with Jesus Christ this year.
>
>  This poem was written by a 13 year old boy who died of a brain tumor
>  that he had battled four years.  He died on December 14, 1997.  He gave
> this to his mom before he died.  His name was Ben.
>
>
=========================================================================
Date:         Tue, 22 Dec 1998 22:16:11 +0100
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From:         Denis Mladinic-Vulic <Denis.Vulic@PUBLIC.SRCE.HR>
Subject:      hand surgery

I need  information about a surgeon that is experienced in hand
 surgery for  the children   with Apert syndrome.  The surgeon would be
from Europe.
>   Thank you !
>                                         Denis Vulic,MD
>                                          Croatia, EU
=========================================================================
Date:         Tue, 22 Dec 1998 14:52:31 -0800
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From:         "Pulido, Laura" <PulidoL@OR.CSMC.EDU>
Subject:      Re: Dry Eyes
MIME-Version: 1.0
Content-Type: text/plain

        Rich and Karen,
        I was disappointed in the beginning.  My disappointment was that
Martha ended up with four fingers instead of five.  I remember feeling so
much anger towards the doctor and someone else.  Then when the bandages came
off the fingers looked all "patched up" with the skin grafts.  Martha is
learning to put what she has to good use.

        Laura, Los Angeles, CA

> On a different topic. Our Andrew has his first bilateral finger op
> done about 6 weeks ago. He has 4 fingers on both hands. Was
> anyone else very disappointed with the results.??
>
> Take care, You have friends here.
> Regards
> Rich & Karen in PA.
>
=========================================================================
Date:         Tue, 22 Dec 1998 18:36:41 EST
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From:         Nodrmat26@AOL.COM
Subject:      Zoey's Sick
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Zoey's Mom, Christina here and now that things have calmed down a little, I
wanted to ask that everyone who believes in God, pray for little Zoey.  She
caught a cold and was admitted into the ICU on Friday.  Saturday night, while
out with my 5 year old, I called my Mom at the hospital to check on Zoey and
they said that she was getting worse and they needed to ventilate her, which
on Zoey, they'd need to sedate her also, because she has always fought the
ventilator.  So, I went back to the hospital.  Through the night she got
progressively worse until they doctors took me into a room and explained to me
that they were trying everything and failing miserably and that they next step
was to do ECMO on Zoey.  Don't know what it stands for, but it essentially
bypasses Zoey's heart and lungs to keep her alive while her lungs healed.  Her
lungs were so inflammed on her left side, that air couldn't reach the places
they needed to.  Then they told me that ECMO has it's own risks including her
bleeding to death, getting another infection, and it could possibly not help
her at all.  So, they wouldn't fault me if I decided not to put her through
ECMO and let her go.  I call it "The Talk".  I was faced with letting my dying
child go or putting her through something aweful that could kill her anyway.
It's the absolute worst feeling I've ever had in my entire life.  So, to make
a long story short, Zoey throughout the day stabilized enough to where they
were able to do a few other "tricks" and she eventually turned around.  She is
still being supported by a high-frequency vent and they are still watching her
like a hawk, but for now...it looks as if she's going to make it.  Turns out,
she caught RSV.  For those of you who've never had to deal with it (and I hope
that's everyone), it's the nastiest virus I've ever seen.  It's done so much
damage to her lungs, that she'll probably have lifetime effects.  It's
extremely contagious and is nothing but a cold to you and I, but can kill
children with lung problems.
I'll end here and just ask that everyone keep Zoey in there thoughts.  I'm
told she'll most likely be very sick for awhile, so I'll keep you posted.
Christina
Arctic San Antonio
=========================================================================
Date:         Tue, 22 Dec 1998 19:07:33 EST
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From:         BBarn60368@AOL.COM
Subject:      Re: Zoey's Sick
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Dear Christina:

Yes, I believe in God and most certainly I will pray for Zoey!! I hope she is
feeling better now and that you can rest a little easier since hearing of her
improvement.  She is precious, I have seen her pictures.  I can't imagine the
feelings that you have experienced through this.  Please know that I am
praying for you as well.

Much love and may God bless you,
Alice in Orlando
=========================================================================
Date:         Tue, 22 Dec 1998 19:08:12 EST
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From:         GSieb91515@AOL.COM
Subject:      Re: Zoey's Sick
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Christina-

We are so sorry to here what you and Zoey are going through.  When Jonathan
had his first cranial surgery there was a family in ICU that had a son with
RSV and was extremely ill.  They couldn't seem to get anything to work.  I
often think back to them and what they went through.  Zoey has had to endure
so much these past months, but she has proven to be a real fighter.  Our
hearts and prayers will continue to be with you all that she will recover
quickly.  Feel free to call us if you need someone to talk to.  We are
practically neighbors.

Brenda
Houston
=========================================================================
Date:         Tue, 22 Dec 1998 19:10:24 EST
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From:         GSieb91515@AOL.COM
Subject:      Re: First Christmas in Heaven
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Laura,

Thank you for sharing this.  It is one of the best inspirational writings I've
read.  Our prayers continue to be with the Kilner's, Harmon's and Dixon's.

Brenda
Houston
=========================================================================
Date:         Tue, 22 Dec 1998 19:18:35 EST
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From:         GSieb91515@AOL.COM
Subject:      Re: (no subject)
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Alice,

You put my exact feelings into words so eloquently.  It was lovely reading
your story and yes we too after 2 years with our beloved Jonathan feel so
incredibly blessed.  I know that I am much closer to God than I would have
been had Jonathan not been born.  Thanks for sharing your story.  Merry
Christmas.

Brenda
Houston
=========================================================================
Date:         Tue, 22 Dec 1998 19:20:38 EST
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From:         GSieb91515@AOL.COM
Subject:      Re: positive comment
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It's so great to hear happy stories like this.  It really does give us hope
that not all kids will be mean.  Thanks.

Brenda
Houston
=========================================================================
Date:         Tue, 22 Dec 1998 19:25:44 EST
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From:         GSieb91515@AOL.COM
Subject:      Re: good toys
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Colleen,

Jonathan also received an adjustable BBall set for  his 2nd birthday (12/6).
He loves it and has really helped with his extension over his shoulders.  He
is still fairly limited reaching straight up.  I highly recommend it for
others that may have that limitation.

Brenda
Houston
=========================================================================
Date:         Tue, 22 Dec 1998 19:47:26 EST
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From:         Marilyn Williams <Mbwill43@AOL.COM>
Subject:      Prayers
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I will be praying for Zoey and I know God is watching over you all. Please
pray for Carlee and her upcoming surgery on Dec. 31 God be with you Carlee's
Grandma Marilyn in Florida
=========================================================================
Date:         Tue, 22 Dec 1998 20:18:03 EST
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From:         Lisa Guyette <LAM1126@AOL.COM>
Subject:      Re: (no subject)
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Wow you told my story with a beautuful ending.  Thank yiu and merry xmas!
=========================================================================
Date:         Tue, 22 Dec 1998 21:07:03 -0500
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From:         baconsmith <bluenose@TELUSPLANET.NET>
Subject:      Re: Zoey's Sick
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Dear Christina.  Pat in Calgary here.  Also very cold.  What a horrible time
poor little Zoey has had, and you too.  I'll keep you both in my thoughts.
Hope you are able to get a little rest yourself and that the doctors have a
few more tricks up their sleeves to help Zoey.  We need a few miracles here.
Please keep us updated.
Pat (EvaJessie 5  Tessier cleft)
=========================================================================
Date:         Tue, 22 Dec 1998 21:57:38 EST
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From:         NephiRose@AOL.COM
Subject:      Re: Zoey's Sick
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Christina,
Zoey's in my prayers.  Bless your heart for being so brave when it's hard to
be.

Belinda
Utah
=========================================================================
Date:         Wed, 23 Dec 1998 00:42:39 +0000
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Comments:     Authenticated sender is <jgibson2@POP.erols.com>
From:         jgibson2@EROLS.COM
Subject:      Re: Zoey's Sick
In-Reply-To:  <fe3f9108.36802d09@aol.com>
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Christina,
     RSV is one of those nasty bugs that NICU nurses really hate.
I'm so sorry that Zoey is sick and I certainly will keep her in my
prayers.

     It's too late to help Zoey, but there are 2 preventives for
RSV available now for kids who are high risk for RSV complications.
One is Respigam -- it's been out for a couple of years.  I forget the
name of the other, it's new this year.  Those of you with kids who
already have respiratory problems should definitely ask your
children's pediatricians about this ASAP as we're well into RSV
season.

Judy

> For those of you who've never had to deal with it (and I hope that's
> everyone), it's the nastiest virus I've ever seen.  It's done so much damage
> to her lungs, that she'll probably have lifetime effects.  It's extremely
> contagious and is nothing but a cold to you and I, but can kill children
> with lung problems. I'll end here and just ask that everyone keep Zoey in
> there thoughts.  I'm told she'll most likely be very sick for awhile, so
> I'll keep you posted. Christina Arctic San Antonio
>
Judy Gibson

jgibson2@erols.com
=========================================================================
Date:         Wed, 23 Dec 1998 07:44:50 EST
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From:         Jenngram@AOL.COM
Subject:      Re: Zoey's Sick
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Christina,

You and Zoey are in our thoughts. I hope she recovers quickly....RSV is a
nasty little bug

Jenn(Tampa/St. Pete)
=========================================================================
Date:         Wed, 23 Dec 1998 13:46:23 -0500
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From:         Richard Thornquist <rlthorn@EARTHLINK.NET>
Subject:      Re: Zoey's Sick
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Christina,

You can be sure that someone in Massachusetts will be praying for little
Zoey.  Please stay strong for her and yourself.  I am deeply sorry that you
must go through this at such a joyous time of year, but the important thing
is to remember that she is starting to turn around.  Lots of love is being
sent your way.  Please keep us posted.

Lynn Thornquist
=========================================================================
Date:         Wed, 23 Dec 1998 17:17:58 -0600
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From:         Chad & Denise Graham <cgraham@INFOAVE.NET>
Subject:      ZOEY'S SICK
MIME-version: 1.0
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Christina,

        We will keep Zoey in our prayers especially over the holidays.  I
know that "TALK" you are talking about.  Daryl was on an Ocillator and
experimental treatment for a month and we were told that he was going to be
put on ECMO.  They had the team there and set it up and everything, but God
interviened and he was not put on it at the last second.  Boy, I can only
imagine your relief.  That was one of the toughest decisions I ever had to
make was to agree to the experiment and ECMO for his treatment.  I wish you
all the best and if you ever need to talk, I am here!  God Bless!
 

                                        Denise Graham
=========================================================================
Date:         Wed, 23 Dec 1998 16:04:13 -0800
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From:         "Brent E. Young" <beyoung@IX.NETCOM.COM>
Subject:      Re: Zoey's Sick
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Nodrmat26@AOL.COM wrote:

> Zoey's Mom, Christina here and now that things have calmed down a
> little, I
> wanted to ask that everyone who believes in God, pray for little
> Zoey.  She
> caught a cold and was admitted into the ICU on Friday.  Saturday
> night, while
> out with my 5 year old, I called my Mom at the hospital to check on
> Zoey and
> they said that she was getting worse and they needed to ventilate her,
> which
> on Zoey, they'd need to sedate her also, because she has always fought
> the
> ventilator.  So, I went back to the hospital.  Through the night she
> got
> progressively worse until they doctors took me into a room and
> explained to me
> that they were trying everything and failing miserably and that they
> next step
> was to do ECMO on Zoey.  Don't know what it stands for, but it
> essentially
> bypasses Zoey's heart and lungs to keep her alive while her lungs
> healed.  Her
> lungs were so inflammed on her left side, that air couldn't reach the
> places
> they needed to.  Then they told me that ECMO has it's own risks
> including her
> bleeding to death, getting another infection, and it could possibly
> not help
> her at all.  So, they wouldn't fault me if I decided not to put her
> through
> ECMO and let her go.  I call it "The Talk".  I was faced with letting
> my dying
> child go or putting her through something aweful that could kill her
> anyway.
> It's the absolute worst feeling I've ever had in my entire life.  So,
> to make
> a long story short, Zoey throughout the day stabilized enough to where
> they
> were able to do a few other "tricks" and she eventually turned
> around.  She is
> still being supported by a high-frequency vent and they are still
> watching her
> like a hawk, but for now...it looks as if she's going to make it.
> Turns out,
> she caught RSV.  For those of you who've never had to deal with it
> (and I hope
> that's everyone), it's the nastiest virus I've ever seen.  It's done
> so much
> damage to her lungs, that she'll probably have lifetime effects.  It's
>
> extremely contagious and is nothing but a cold to you and I, but can
> kill
> children with lung problems.
> I'll end here and just ask that everyone keep Zoey in there thoughts.
> I'm
> told she'll most likely be very sick for awhile, so I'll keep you
> posted.
> Christina
> Arctic San Antonio

   Christina,

I was so sorry to hear about Zoey's condition, especially right before
Christmas. How awful this must be for you and your family. I will be
thinking about you. Have a Merry Christmas.

Kelly Spadini
=========================================================================
Date:         Thu, 24 Dec 1998 21:18:41 EST
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From:         Cristy Williams <CARLEE0604@AOL.COM>
Subject:      Re: Zoey's Sick
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Christina,

We will be thinking of Zoey and you. Hope you all have a great Christmas and a
Happy New Year.

Cristy, Clyde, Cody, Carlee
Orange Park, Florida
=========================================================================
Date:         Thu, 24 Dec 1998 22:18:14 -0600
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From:         Laurie Bailey <jkb@ELPASO.NET>
Subject:      Merry Christmas
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Hey everyone!

I know I haven't been very vocal lately but, I have been lurking. My
prayers are with Zoey. I know the RSV virus very well. Jacob has had it two
years in a row. Luckily, he has not been hospitalized with it.

Just wanted to wish everyone a very Merry Christmas. I know our family will
be enjoying our holiday because it is wonderful we are not in the hospital
with Jacob like we were last year.

Happy Holidays everyone!!!

P.S. I've sent out Christmas cards to everyone on the previous list with
updated pictures in them.

Laurie Bailey
jkb@elpaso.net
=========================================================================
Date:         Thu, 24 Dec 1998 23:33:14 EST
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From:         CatnDon@AOL.COM
Subject:      Happy Holidays, from our home to yours
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Cathie, Teeter, and I would like to take this opportunity on Christmas Eve to
thank all of you for the love and family togetherness you've shown us and each
other since our lives have touched.  We're grateful for every family we have
met, and the amazing ways that our lives have been improved in knowing all of
you.

It seems like such a short time ago that we felt completely isolated, a
feeling I know many of you have shared.  Yet we will soon celebrate the third
anniversary of Teeter's Page, and the listserv has been active for a little
over two years now.  We've experienced each others little triumphs and great
sorrows.  We've watched our kids grow and progress, and developed special
bonds with our adult subscribers who have Apert.

Soon, we will leave 1998 behind and begin another new year.  We wish that your
year will be just as full of joy and hope as ours will be, and we look forward
to each new day and the challenges that it brings.

We love each and every one of you, and wish you the happiest of times in the
true spirit of this holiday season......

Love, Don, Cat, and Teeter
=========================================================================
Date:         Fri, 25 Dec 1998 18:49:50 EST
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From:         Nodrmat26@AOL.COM
Subject:      Re: Zoey's Sick
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In a message dated 98-12-23 00:43:17 EST, you write:

<< there are 2 preventives for
 RSV available now for kids who are high risk for RSV complications.
 One is Respigam -- it's been out for a couple of years.  I forget the
 name of the other, it's new this year. >>

Zoey's Mom here.  Zoey had the Respigam infusion last year and didn't catch
the virus, this year she got the "new stuff", it's a shot now, and for some
reason has still come down with it.  If I have a choice, I suppose I'll pick
the Respigam next year.
To update on Zoey, she's still hanging in there.  Gave us another little scare
last night...her heart rate went into the 70's and her Oxygen saturations were
dropping also, the drs and nurses did the appropriate things and she came back
up.  I suppose I needed to be reminded how fragile she still is and how
powerful that God is.  She's recovering extremely slowly, but I can handle
that...I think.  Thank you everyone who has responded to the news on Zoey.  It
feels good to know that "my family" cares.  Thank you.  Keep you updated!
Christina
Still cold in S.A.
=========================================================================
Date:         Sat, 26 Dec 1998 22:01:44 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: Zoey's Sick
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Dear Christina:

Wow, I've been away from the computer for about 2 weeks, too swamped to even
get down here.  I am so sorry to hear about what you and Zoey have been going
through.  Sounds as though things are improving.  She's a tough cookie and
will hang in there.  Our thoughts and prayers are with you.

Janine Krebs
(NY)
=========================================================================
Date:         Sat, 26 Dec 1998 22:04:47 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
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Hello all:

Hope everyone had a happy, healthy holiday.

Alice, what a way you have with words.  If I were as eloquent, I might have
written the same thing.  My husband and I both had tears in our eyes.

The first Christmas in Heaven poem is beautiful.

I want to wish best wishes to Carlee on her upcoming surgery and a happy,
healthy new year to all of us and our kids that 1999 brings only good things
to all of us.

Always in our thoughts and prayers are those that we have lost and those that
are sick or ill.

Best wishes to all,

Janine Krebs
=========================================================================
Date:         Sun, 27 Dec 1998 10:20:10 -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:         Timothy Holt <tholt@WEBTV.NET>
Subject:      Apert
Content-Type: Text/Plain; Charset=US-ASCII
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Hello!!

         My name is Mechelle Holt.  Our Daughter was born with Apert. My
family consist of my husband Tim, Chelsea (age 5), and Courtney (age
almost 7 months).  Courtney has Apert.   Her DNA came back positive for
this syndrome. We call her Court.  We had never seen a cleft palate,
never heard of the syndrome, and at that time weren't very knowledgeable
about the medical terms, and how this could affect our baby.  Since then
we have educated ourselves.  The only thing is, I don't like statistics,
I like to see, an hear from real people with Apert.
           She spent 11 days in NICU.   She was born June 3, 1998.  We
have since then, been through a cranosyntisis surgery,and the release of
her index fingers plus deepening the web of the pinky fingers.
           We were told (by the specialist) before we took her home,
"take this baby home, love her and be good to her, no surgery until one
year of age".  We were sent (by our peditrician, and geneticist) to the
Baptist hospital (Bowman Gray/Wake Forest University) due to the fact
that Court didn'thave her corpus collosum.  We were then told we had to
have surgery, in less than a month.  All of her sutures were closed at
birth.  As if we didn't have enough to worry about before this!
Something just didn't set right, with all the specialist in Ashville
saying amputate a finger, a Greenville hospital said thank you for
educating me, amputate a finger.  We didn't want someone we had to
educate preforming sugery on our baby!  I wanted a third opinion, a
finger is a lot to lose if you don't have to.So I asked our plastic
surgeon, he said I can make her 5 functional fingers.  This was before
the cranial surgery.  We left thinking either he is good, or he is
conceeded!  After her cranial surgery, she was placed in PICU.  Even the
nurses was familar with Apert.  This was very comforting!!
We are so pleased to find such great care, in one place.  Our plastic
surgeon use his own team of specialist, we do not have to search for
quality health care.  It is all taken care of through his office.  This
has made it a little less stressful, even though it is a 3 hour drive
one way!
Our next one will be on January 6th.  This one will be to seperate her
middle and ring fingers.
We are looking at a cleft palate repair in spring, and another cranial
surgery in early summer!
WOW!! What a way to start the year!

Good luck to Zoey, Carlee!!!

Hope the New Year brings lots of love, and happiness.
 

Mechelle Holt address:tholt@webtv.net
=========================================================================
Date:         Sun, 27 Dec 1998 10:44:37 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:         Liz Saylan <LSaylan@AOL.COM>
Subject:      Re: Zoey's Sick
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In a message dated 12/25/98 3:50:04 PM Pacific Standard Time,
Nodrmat26@AOL.COM writes:

<<
 >>
My thoughts and prayers are with you! I hope She gets better real soon, gets
to enjoy the new year's eve celebration already healed. I have been busy, but
have been reading all my mail. I am sorry for not responding to anyone's mail
sooner. Hope everyone had a wonderful christmas and will have a Happy &
Healthy New Year!
   Liz
=========================================================================
Date:         Sun, 27 Dec 1998 10:52:46 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:         Liz Saylan <LSaylan@AOL.COM>
Subject:      Re: Apert
Mime-Version: 1.0
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To all newcomers!
        My name is Liz Saylan I am 30 years old and I have apert's syndrome. I have
been on this listserv for a couple months now since October, I hope I can be
of any help to all of you. Though the sugeries I have undergone are more
advanced now adays I know what it is like for you and your children.
        I am not sure exactly where in th month of October I sent my letter, but if
you look in the chronicles of the listserv you will find my story there. Also
in the clubhouse I have some pictures there too! Take care everyone and Have A
Happy New Year!

                Liz
=========================================================================
Date:         Sun, 27 Dec 1998 14:57:04 +0000
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Comments:     Authenticated sender is <jgibson2@POP.erols.com>
From:         jgibson2@EROLS.COM
Subject:      Re: Zoey's Sick
In-Reply-To:  <7865d6a7.3684249e@aol.com>
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> Zoey's Mom here.  Zoey had the Respigam infusion last year and didn't catch
> the virus, this year she got the "new stuff", it's a shot now, and for some
> reason has still come down with it.  If I have a choice, I suppose I'll pick
> the Respigam next year.

   I'm glad to hear that Zoey is a little better.  I'll continue to
pray for her.

   I found web sites with the full prescribing information for both
Respigam & Synagis (the other preventive) so people can read the
details if they want.

  Basically, Respigam is an IV preparation and requires a trip to the
hospital for the day.  Synagis is an IM injection.   Both are given
monthly for the duration of the RSV season (can last through May in
some parts of the country.  The studies were done on kids under 4
years of age.

      Both products showed similar reduction in rates of
RSV complications -- clearly the Synagis is going to be encouraged by
health care providers and insurance carriers because it's easier and
(because it's quicker) so much cheaper.  Neither product is
cheap, though.

   It is believed that Respigam may offer some protection against
respiratory illnesses other than RSV, while Synagis does not.  Also,
because it is so new, the study group for Synagis was much smaller
than the study group for Respigam.
      Both are produced by the same company, which expects that
Synagis will largely take the place of Respigam. The published
studies (in their prescribing info) only compared the products to
placebo.  I don't know if they plan to do a study comparing the
products to each other.

Web Site for Respigam info :
http://www.medimmune.com/products/resppi.htm

Web site for Synagis info:
http://www.medimmune.com/products/synagispi.htm

Web site fo BPD info, including info about Synagis & Respigam (this
one is in English, as opposed to medicalese)
http://www.cheo.on.ca/bpd/BPDprog.htm

Judy Gibson

jgibson2@erols.com
=========================================================================
Date:         Sun, 27 Dec 1998 12:28:59 PST
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         christine bucci <christinebucci@HOTMAIL.COM>
Subject:      apert's
Mime-Version: 1.0
Content-Type: text/plain

hello everyone

my name is christine bucci and i have apert's.  i am 47 years old
and work full time in a large office as a secretary.  i am 5"3'
inches tall and have brown hair and eyes.  i enjoy reading, music
outdoors, movies, writing,etc.  i am looking to get an idea of
what it will be like when i retire.  does anyone have any idea?
i hope everyone had a nice christmas and will have a happy new
year.

christine bucci

r.i.
 

______________________________________________________
Get Your Private, Free Email at http://www.hotmail.com
=========================================================================
Date:         Sun, 27 Dec 1998 17:27:37 -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:         Robin MacDonald <macdonal@GOLDEN.NET>
Subject:      Re: apert's
MIME-Version: 1.0
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christine bucci wrote:
>
> hello everyone
>
>> what it will be like when i retire.  does anyone have any idea?
> i hope everyone had a nice christmas and will have a happy new
> year.
>
> christine bucci
>
> r.i.
>
>
Hi Christine...in regards to what exactly about retirement are you
wondering?  i.e.,,,social, financial, health?
thanks...______________________________________________________
> Get Your Private, Free Email at http://www.hotmail.com
=========================================================================
Date:         Sun, 27 Dec 1998 21:07:46 -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: Happy Holidays, from our home to yours
MIME-Version: 1.0
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Hi Everyone,
With the hustle and bustle of holiday season, have not had time to read
my email....Just wanted to give a special thanks to Cathie, Don, and
Teeter for creating this group.  We are all blessed to have had the
experience of having a special child.  The experience puts things into
perspective and it is important for us to share our knowledge,
experiences and feelings.  Thank-you for setting up this forum to enable
us to do that.  I know it must of taken a considerable amount of time
and  I am grateful for that.
In our Christmas letter this year, I was so blessed to say that health
is good for us at year end, a few rounds of antibiotics here and there,
but in perspective,  we all know that is little to worry about and now
it has been 6 months with no surgery for Allie. I pray we can go at
least six months more.

Christina, Zoey is in my prayers and my heart goes out to you, I hope
things continue to improve.  There is nothing worse than seeing your
little one suffering.  There is a little book called the "The Precious
Present"  by Spencer Johnson.  I have read it many times over when times
have been unbearable, very inspirational.  Let us know how she is doing.
I noticed your letter was written Christmas day.  Allie was born Dec 22,
1989 and I too remember the sadness of being in the hospital on that
Christmas. I pray you will be home soon.

Also, I agree about the poem, First Christmas from Heaven, the message
is touching.  The words from Shirley describe those first months so
beautifully.  Thank you for sharing.

Welcome to the Holt family, this is a great source of info for you.
People are very willing to help....It is a pleasure to hear from adults
with Aperts... Welcome Christine, looking forward to retirement one day
too....I look forward to hearing more from you.
Will be thinking of Carlee on the 31st and anyone else with upcoming
surgeries.

Happy New Year to all!
Claudia Salazar (Allie's mom)
San Diego

CatnDon@AOL.COM wrote:
>
> Cathie, Teeter, and I would like to take this opportunity on Christmas Eve to
> thank all of you for the love and family togetherness you've shown us and each
> other since our lives have touched.  We're grateful for every family we have
> met, and the amazing ways that our lives have been improved in knowing all of
> you.
>
> It seems like such a short time ago that we felt completely isolated, a
> feeling I know many of you have shared.  Yet we will soon celebrate the third
> anniversary of Teeter's Page, and the listserv has been active for a little
> over two years now.  We've experienced each others little triumphs and great
> sorrows.  We've watched our kids grow and progress, and developed special
> bonds with our adult subscribers who have Apert.
>
> Soon, we will leave 1998 behind and begin another new year.  We wish that your
> year will be just as full of joy and hope as ours will be, and we look forward
> to each new day and the challenges that it brings.
>
> We love each and every one of you, and wish you the happiest of times in the
> true spirit of this holiday season......
>
> Love, Don, Cat, and Teeter
=========================================================================
Date:         Mon, 28 Dec 1998 13:18:19 -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:         "D. Jefferson" <djeff@MIDWEST.NET>
Subject:      Re: Alice Lynch
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Alice,

Please e-mail me directly.

Thanks, Dori

Dori A. Jefferson
djeff@midwest.net