log9905b

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Date:         Sat, 8 May 1999 10:13:53 EDT
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Sheila MacDonald <SMacdo1030@AOL.COM>
Subject:      Fwd: Fw: NEEDLES (serious)
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Reply-To: <pumfrey2@WORLDNET.ATT.NET>
From: "pumfrey" <pumfrey2@WORLDNET.ATT.NET>
To: "Ron/Emily Seager" <Easeag@aol.com>,
        "Sheila Marie MacDonald" <smacdo1030@aol.com>,
        "max funderburk" <maxnt@mdc.net>, "Jean" <broud@aol.com>,
        "Janice work" <jswens@neesnet.com>
Subject: Fw: NEEDLES (serious)
Date: Thu, 6 May 1999 20:49:47 -0400
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Message-Id: <19990507004550.GCRX9109@default>

----------
> From: sharon <skearney@massed.net>
> To: Tina Broderick <t-marie7@juno.com>; Rosemary Kearney
<RKear3146@AOL.com>; Nancy Maroney <Nancy_Maroney@gmo.com>; Lisa DiCicco
<Lisa_M_DiCicco@fleet.com>; Kevin Broderick <KBroderick@genetics.com>;
Kathy M. Howard <fancy-rose@usa.net>; Julie Palumbo
<julie.palumbo@tfn.com>; Judith A. Pumfrey <pumfrey2@worldnet.att.net>;
Jennifer Forest <info@embryotech.com>; Catherine Wolfe
<cwolfe@progress.com>; Alfred Groleau <grolan2@andonet.com>
> Subject: Fw: NEEDLES (serious)
> Date: Thursday, May 06, 1999 8:36 PM
>
>
> -----Original Message-----
> From: dianec <dianec@raex.com>
> To: luanne <strutter76@juno.com>
> Cc: tess and joe <tjrawlings@uswest.net>; mary ann <homic@raex.com>; ron
and
> kathy <kathyn@raex.com>; barry and betty <bigmott69@aol.com>
> Date: Monday, April 26, 1999 5:00 PM
> Subject: Fw: NEEDLES (serious)
>
>
> >
> >
> >>
> >> This goes out to all my friends and family....be careful.
> >>
> >> ~love,
> >>
> >> ~jenna
> >>
> >>
> >>
> >> >>Julie Johnston
> >> >>
> >> >I recieved this from my cousin Julie who along with her husband is a
> >> >paramedic. This report came through to
> >> >then from their local police deptartment asking that all those with
> >> >computers and email send to as many of thier
> >> >firends and lists as possible. I have been asked to do the same. I
> hope
> >> >that you will do the same. List owners
> >> >please post this to your subscribers and ask them to send to all
their
> >> >friends and so on and so forth. The evil
> >> >is spreading through our world, we have just been knocked over by the
> >events
> >> >in Littleton, Colorado and now
> >> >a new threat hans over us.
> >> >Thank you
> >> >Marianne/ Remy
> >> >>
> >> >>> This is another sad reminder of the deterioration of our society;
it
> >is
> >> >>> also a public service to encourage caution in public places...
> >> >>>
> >> >>> For your information, a couple of weeks ago, in a Dallas movie
> >theater, a
> >> >>> person sat on something sharp in one of the seats. When she stood
up
> >to
> >> >>> see what it was, a needle was found poking through the seat with
an
> >> >>> attached note saying, "you have been infected with HIV". The
Centers
> >for
> >> >>> Disease Control in Atlanta reports similar events have taken place
in
> >> >>> several other cities recently. All of the needles tested HAVE
been
> >> >>> positive for HIV. The CDC also reports that needles have been
found
> >in
> >> >>> the coin return areas of pay phones and soda machines.
> >> >>>
> >> >>> Everyone is asked to use extreme caution when confronted with
these
> >types
> >> >>> of situations. All public chairs should be thoroughly but safely
> >> >>> inspected prior to any use. A thorough visual inspection is
> >considered
> >> >>> the bare minimum. Furthermore, they ask that everyone notify their
> >family
> >> >>> members and friends of the potential dangers, as well.
> >> >>>
> >> >>> The previous information was sent from the Dallas Police
Department
> to
> >> >all
> >> >>> of the local governments in the Washington area and was
> >> >>> interdepartmentally dispersed. We were all asked to pass this to
as
> >many
> >> >>> people as possible.
> >> >>>
> >> >>> Judith Baker MHSA
> >> >>> Region IX Hemophilia Program
> >> >>> Childrens Hospital Los Angeles
> >> >>> 4650 Sunset Blvd., Box 54
> >> >>> Los Angeles, CA 90027
> >> >>> Tel. 323-669-4560 FAX 323-663-6896
> >> >>>
> >
> >
> >

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=========================================================================
Date:         Sun, 9 May 1999 03:45:34 EDT
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Lisa Guyette <LAM1126@AOL.COM>
Subject:      HAPPY MOTHER"S DAY
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Happy Mother's Day to all the mother's on the Listserv.

Thank you to everyone who responded to my letter about my daughter catching
up with sitting up and holding her bottle. Samantha now sits for almost a
minute. I will try being in front of her like it was recommended.

Congratulations Jake on having your trach taken out. I can't wait to hear
about how much fun he has this summer with other children.

I got the most adorable pictures today of Carmen Rae Hill. Thank you so
much. She's beautiful. And quite the fashion plate. I especially got a
kick of her reaction to her grandfather taking her hat and putting it on his
head. I'm really enjoying getting the photos for Samantha's scrapbook. I'll
be mailing more out this weekend, I'll also make sure that I've previously
sent to the Kreb's and Hills If not their coming.

I've had a lot of anxiety these past few days. I couldn't figure out where
it was coming from. Then I realized that Samantha's first surgery is coming
up and the concern for that was hidden. Once I came to realize what was
bothering me I felt better. There is a part of me that just wants to leave
her hands alone. Can everyone relate?

I'm sure the shoe concern will be coming up shortly, but right now we're
trying to deal with hats. She is outgrowing them almost every two months.
I found the ones that look the best are so far from the Gap. Unfortunatedly
they are a little big and then before I know it too small. Has anyone found
a store that has a good selection or a certain make that works well?

Well I'm looking forward to having my first mother's Day tomorrow, (unless
you count last year when Samantha's was in my belly).

Take care everyone,

Love Lisa Guyette
=========================================================================
Date:         Sun, 9 May 1999 07:21:04 EDT
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         BBarn60368@AOL.COM
Subject:      Re: HAPPY MOTHER"S DAY
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Dear Lisa:
HAPPY MOTHER'S DAY TO YOU! And thanks for wishing the same to all of us. I
know exactly what you mean about stress sneaking up on you when a surgery is
nearing. My husband and I would start snapping at each other big time and
when I would stop to try to figure it out, it would occur to me that it was
stress due to a surgery that was nearing. Hang in there the surgeries slow
way down after the skull and hands are taken care of!

Much love and may God bless you during this scary time,
Alice in Orlando, Fl.
=========================================================================
Date:         Sun, 9 May 1999 13:52:49 +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:      virus alert
Comments: To: DDigh@aol.com, schallenmueller@paradigma.de,
          RRosetta@worldnet.att.net, rmk@netaxs.com,
          homeschool@mail.catholicity.com, baconsmith
          <bluenose@telusplanet.net>,
          larsenjr@juno.com, kjwmsj99@aol.com, Alice Hamilton
          <alicemham@yahoo.c>
MIME-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7BIT

If you received another email from me today with an attached
file, please run your virus scan software. I found an email
attachment with a virus on my computer today -- it seems to be the
type that emails itself automatically.

Judy
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Date:         Sun, 9 May 1999 18:38:43 EDT
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Marjorie Harmon <MHTeach102@AOL.COM>
Subject:      Happy Mother's Day
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Howdy from the Ranch,

I bet you all thought I disappeared from the face of the earth, well I got
close a couple of times, but I am still here. I wanted to take this time to
wish everyone a very special and happy Mother's Day and to remind everyone to
give the kids an extra hug.

If it isn't too much trouble I would also like to ask for some prayers for
myself. I am having a very hard time getting through this Mother's Day. It
seems like time has decided to stand still. But everyone tells me that the
holidays are the worst but even I didn't realize how bad or long they could
be.

For those of you who don't know me, I lost my darling little boy BJ last
August after a long battle with countless infections and spinal meningitis.

Lots of Love,
Marjorie
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Date:         Sun, 9 May 1999 23:14:20 EDT
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Marilyn Williams <Mbwill43@AOL.COM>
Subject:      Re: Happy Mother's Day
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I'M SO SORRY FOR YOUR LOSS AND WILL BE PRAYING FOR YOU. I DON'T THINK I'VE
HEARD OF YOU SINCE WE GOT ON THE LIST, MY GRANDDAUGHTER CARLEE IS 11 MOS OLD
AND HAS APERTS. SHE JUST HAS THE FUSED HEAD AND FINGERS AND TOES BUT OTHER
THEN THAT SHE IS HEALTHY, THANK GOD, SHE DOESN'T HAVE SOME OF THE PROBLEMS
THAT SOME OF THE KIDS HAVE, AND THAT IS A BLESSING. WE WILL THINK OF YOU AND
PRAY FOR YOU IN YOUR TIME OF NEED TAKE CARE AND GOD BE WITH YOU. MARILYN
=========================================================================
Date:         Mon, 10 May 1999 00:30:33 EDT
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Lisa Guyette <LAM1126@AOL.COM>
Subject:      Re: Happy Mother's Day
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Marjorie: Much prayers and love are coming from Lisa, Richard and Samantha
Guyette. Please keep in touch with this listserv.

Love Lisa Guyette
Mother of Samantha (six months on Tues with Aperts)
=========================================================================
Date:         Mon, 10 May 1999 00:58:57 -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:         Mechelle Holt <tholt@WEBTV.NET>
Subject:      Hi!
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--WebTV-Mail-791560481-8265
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We have a problem with finding shoes that fit as well! I have to buy
Courtney (11 months old) soft shoes, without the hard soles. Which is
already getting harder to find, so I usually just put socks on her. The
height of the shoe isn't enough for her feet to fit into, without
forcing her foot to be flat. Has anyone else been through a cleft
(soft) palate surgery? We go through pre-op today (since it is 12:50
am). I am VERY PETRIFIED! At first we were told she would need a
trach, then he said she probably wouldn't. That was 2 months ago, her
Dr.has been out of the office writing a book, and hopefully we will see
him today. If not we will cancel her surgery, until after he has
examined her again. The last time we listen to the physicians'
assistant, we were told skin grafts would be taken from her thigh, and
(after surgery) we discovered them in her groin. Surgery has been
scheduled for May 19th. Please say an extra prayer for us as we drive 3
hours (one way) to pre-op, and hope to receive good news! :) HAVE A GOOD
DAY!
MECHELLE

--WebTV-Mail-791560481-8265
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Date:         Mon, 10 May 1999 01:25:05 -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:         Mechelle Holt <tholt@WEBTV.NET>
Subject:      shunt
Content-Type: Multipart/Mixed; Boundary=WebTV-Mail-2049012696-7063
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Also, I forgot to mention, we are borderline a shunt. I think I
intentionally forget about this, due to the fact I am devastated about
the problems I have heard they cause. We are also due another cranial
surgery early summer, to release pressure off the brain.
Mechelle

--WebTV-Mail-2049012696-7063
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Date:         Mon, 10 May 1999 10:18:10 EDT
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Yonstein@AOL.COM
Subject:      Re: Palate Surgery
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Mechelle:

Emily had her palate repaired at 9 months of age. The procedure itself
wasn't so bad. We spent one night in the hospital and she came home with the
velcro arm restraints, no-no's I think they were called. The worst part is
that they put a tongue stitch in so that the tongue wouldn't get in the way.
That bothered her more than anything. I have heard people say that their
kids couldn't eat anything or only soft foods and needed special bottles and
nipples after surgery. Emily drank from her regular bottl the very next
morning and she was eating her regular food, although it was baby food at 9
months old.

If you have any other questions, please e-mail me Yonstein@aol.com

Good luck with pre-op.

Janine Krebs
=========================================================================
Date:         Mon, 10 May 1999 08:22:16 -0600
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         baconsmith <bluenose@TELUSPLANET.NET>
Subject:      Re: Happy Mother's Day
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"

Dear Marjorie, Howdy back at you from Calgary

Have been thinking about you and BJ. My little EvaJessie is climbing up
BJ's hill this week on a field trip with her Sparks groups. The hill is a
natural prairie grasslands preserve not far from our house. There was a
fire on that hill recently -- a grass fire. It left a huge black space
afterward, of course, but now the hill has turned so green in that space.
The new growth is coming through strong and beautiful. The spring crocuses
are up and blooming.

ANyway, I stil cannot think of that park and that hill without sending
little thoughts out for BJ, and now of course , also for you. I spent my
Mommy's Day gardening with EvaJessie (Thomas was away at Cub Camp); I gave
both of them lots of hugs though last night.

I hope you are doing alright. It must be very hard for you, especially
during the holidays and Mom's Day. Take good care and please stay in touch
with us all.

Special good wishes to you.

Pat in Calgary
mom to the Peach
=========================================================================
Date:         Mon, 10 May 1999 10:28:42 -0400
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Don Sears <dsears@SCRS.STATE.SC.US>
Subject:      Re: This is serious, needles, etc.
MIME-Version: 1.0
Content-Type: text/plain

Hi folks,

I've said it before and I'll say it again. PLEASE if you get this kind
of chain letter, before you forward it to the apert list (and all of
your other friends) either do one of two things: do some internet
research to determine if it is a hoax, or forward it to me personally
with a request for me to look at it and I will check it for you.

Both of these emails referenced above are urban legends, or email
hoaxes, designed to waste our time and take advantage of internet
'newbies'. We have all fallen prey to them at one time or another, so
don't feel bad. Just use the opportunity to get a little more savvy.
On the Internet more than anywhere else, don't believe everything you
read!

These two hoaxes and many, many more can be found at
http://urbanlegends.miningco.com/library/blhoax.htm. Once you read
through a few of these, you will look at forwarded emails in a new
light!!!!!

A great resource for virus hoaxes can be found at the US Department of
Energy's website at http://ciac.llnl.gov/ciac/ - check the links for
viruses and hoaxes.

Have fun, Don
=========================================================================
Date:         Mon, 10 May 1999 10:32:06 -0400
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Don Sears <dsears@SCRS.STATE.SC.US>
Subject:      BJ
MIME-Version: 1.0
Content-Type: text/plain

It is with much pleasure and pride that I announce the return of BJ's
Page. Cat and Marjorie spent quite a while chatting last night, and
Marjorie decided that it is time.

http://www.apert.org/harmon

Don
=========================================================================
Date:         Mon, 10 May 1999 12:02:06 -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:         david bathrick <bab@MHONLINE.NET>
Subject:      (no subject)
MIME-Version: 1.0
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Hi everybody. My son Griffin(23 months w/aperts) had a cat-scan done
last week. The doctor said there was no fluid and that he doesn't think
that the skull has fused together again. He said he thought that one
side of Griffin's head was growing faster than the other. The
neurosurgeon said he had to talk to Griffin's plastic surgeon and
discuss the options and he would get back to me. Has anyone ever heard
of or dealt with anything like this?

Sincerely,
Betsy Bathrick
=========================================================================
Date:         Mon, 10 May 1999 12:43:34 +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: Happy Mother's Day
In-Reply-To: <8ef4884f.24676873@aol.com>
MIME-Version: 1.0
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> seems like time has decided to stand still. But everyone tells me that the
> holidays are the worst but even I didn't realize how bad or long they could
> be.

A friend who lost her husband a few years ago told me that the
first times without him were the worst for her -- including the first
holidays. She said that for the first year it helped her to break
the routine -- to plan to do something different than she'd done with
her husband. The second year, it helped her to do the familiar
things again.

Judy
=========================================================================
Date:         Mon, 10 May 1999 13:28:32 -0600
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         baconsmith <bluenose@TELUSPLANET.NET>
Subject:      Re: Palate Surgery
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"

Hi Mechelle. EvaJessie had palate repair at 10 months. It was a 3.5 hour
surgery (extensive clefting of primary and secondary palate). She came
through it just fine and was allowed back to her bottle right away. Some
surgeons prefer that the babies be trained off their bottle ahead of time.
Your surgeon will have let you know that if that was the case. EvaJessie
too had the tongue stitch. When I saw her in recovery, it was there, but as
soon as I came in to hold her, they snipped the thread and pulled it out.
It didn't appear to bother her much, but then she was still pretty groggy
from the anesthetic. After the tongue stitch was taken out, the nurses
instructed me to hold EvaJessie so that her tongue would fall forward rather
than back so as not to block that airway. You can imagine that those
tissues in there are going to be swollen from the manipulation of surgery.

EvaJessie refused to drink anything for the first 8 hours or so following
recovery. But then we had the great idea that maybe she was missing her own
brand (we were weaning off the formula and onto cow's milk at hte time) So
my husband ran out and got some whole milk to mix with her formula and once
it tasted like what she was used to (plus she probably was hungry and
stressed after eight hours) she bottled eagerly --- knocked back six ounces
or so and fell right to sleep. We kept her on tylenol once we got home (she
had stronger in the hospital) and gave it to her about 20 minutes or so
before it was time to feed her. I think it helped dull the paina bit so her
mouth didn't feel so sore. We kept her on a regular 4 hour dose of tylenol
for about four days after we got home, then just when she seemed to be
uncomfortable. Really, she bounced back very quickly. She kept her arm
restraints on for about ten days to two weeks and got pretty used to those
too,. At that age she liked to hang out (literally) in her jolly jumper, so
we hung a few things for her to bat at. She was fairly content. She slept
in her no-nos but we took them off for baths and when we were holding her
and playing with her.

Hope all goes well with Courtney's pre-op and surgery. Let us know how it
goes. Take her own brand of food and formula along and know that we are all
here thinking about you.

Pat in Calgary
mom to the Peach
=========================================================================
Date:         Mon, 10 May 1999 19:17:56 EDT
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         BBarn60368@AOL.COM
Subject:      Re: Happy Mother's Day
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit

Dear Marjorie:
It is always so good to hear from you, and I consider it an honor to go
before the Lord on your behalf. Please know you are on my mind, in my heart
and in my prayers.

God Bless and much love to you,
Alice in Orlando, Fl.
=========================================================================
Date:         Mon, 10 May 1999 20:44:38 EDT
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         GSieb91515@AOL.COM
Subject:      Re: Shoes for (all) the rest of us....
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit

Marianne-

I was just thinking the other day how we hadn't heard from you lately. Isn't
that ironic? Anyway, our experience with boy shoes so far is that we get
them a half size larger in length to accomodate the width. I've had the best
luck at Walmart, Payless and Target. The one pair of Stride rite's I bought
lastest the shortest period of time. Not long at all. They left marks
around his foot from day one. I'm hoping we will find a really neat shoe
store that will be just right. Anyway, glad to hear from you and hope all is
well.

Brenda
Houston
=========================================================================
Date:         Mon, 10 May 1999 20:44:43 EDT
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         GSieb91515@AOL.COM
Subject:      Re: JAKE GOT HIS TRACH OUT!!!
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit

Liz,

Congratulations! We haven't had the first hand experience with a trach, but
know how serious it is and are so happy for Jake that he can go out and not
worry about all the things you've had to in the past. Go get 'em Jake. We
are finally surgery free for awhile too so I know how good you are feeling.
My husband's exact words were the same as yours. "He can finally be a kid"!
What a wonderful gift.

Happy Mother's Day to everyone. We wish all out mom's a very happy and
relaxing day!

Brenda
Houston
=========================================================================
Date:         Mon, 10 May 1999 20:54:32 EDT
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         ETolson643@AOL.COM
Subject:      Re: Shoes for (all) the rest of us....
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit

We have also had trouble finding shoes for Tim. His podiatrist recommended
New Balance sneakers because they generally run wide and they are also
available in EEE widths. This seems to have worked fairly well for Tim. In
the summer we invested in a really good pair of sandals (Nike? Adidas?)
which allow for the extra width and also provide some arch support and have
good straps which fasten with velcro. The sandals are great. Too bad that
they really don't cut it during the winters in New England!!!

Beth Tolson
=========================================================================
Date:         Mon, 10 May 1999 21:09:55 EDT
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Marilyn Williams <Mbwill43@AOL.COM>
Subject:      Re: Hi!
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit

HI MECHELLE, HOPE YOUR NEWS IS GOOD CRISTY TOOK CARLEE TO ANOTHER HAND
SURGEON TODAY FOR A SECOND OPINION AND REALLY LIKED HIM. SHE WILL TELL YOU
ALL ABOUT IT LATER. PRAYERS ARE WITH YOU. LOVE MARILYN
=========================================================================
Date:         Mon, 10 May 1999 21:07:47 -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:         Colleen Jones <coljones@PTDPROLOG.NET>
Subject:      Jacob's hand infection
MIME-Version: 1.0
Content-Type: text/plain; charset=ISO-8859-1
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Dear all,
Jacob (almost 3 yrs old) has been battling a hand infection on and off
since August of last year in his one web space. In January he had more
surgery to reopen web space and hopefully clear things up. However, his
hand has been infected 4 times since then. He has been seeing a Doc. of
Infectious Disease since Feb and has been on 5 different antibiotics since
January trying to clear this thing up. Well it is infected again (started
last week). We saw the infectious disease doc today and we are at the point
of possible IV antibiotics. The doc wanted to start them today through a
PICC(?) line but the nurses said they wouldn't be able to get one in him
since veins are hard to get on Jacob. We discussed the possibility of
Intramuscular shots of antibiotic but noone seemed too excited about that.
The doc decided to give one last oral antibiotic a try(Vantin) for a few
weeks. If this doesn't work, we are looking at surgery to go in and clean
the infection area out and put in a broviac or mediport to have the
antibiotics put through. I guess where I need your help is for prayer that
this oral antibiotic works. I figure if all of you out there can add Jacob
to your prayer list it might just work since the antibiotics aren't (even
though I have prayed that each one would do the trick). Maybe,just maybe
there will be power in numbers!! Thanks in advance.
Colleen and gang
(PA)
=========================================================================
Date:         Mon, 10 May 1999 21:40:27 EDT
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Marilyn Williams <Mbwill43@AOL.COM>
Subject:      Re: Jacob's hand infection
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit

Jacob will be in our prayers, we have had to battle hand infection with
carlee and ingrown nails. But never as bad as you are going through, prayer
is a great healer, not that God won't do it with just one prayer, but I
believe in the more the better, take care and let us know how he is doing.
Marilyn
=========================================================================
Date:         Mon, 10 May 1999 21:17:50 -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:         Randy & Deb Picht <rldpicht@INFO.STARPOINT.NET>
Subject:      Pictures
MIME-Version: 1.0
Content-Type: multipart/alternative;
              boundary="----=_NextPart_000_003E_01BE9B2A.8F5FBB20"

This is a multi-part message in MIME format.

------=_NextPart_000_003E_01BE9B2A.8F5FBB20
Content-Type: text/plain;
charset="iso-8859-1"
Content-Transfer-Encoding: quoted-printable

Hello Everyone.

We hope everyone had a wonderful Mother's Day. I did. It was a =
Mother/Daughter bonding day (Randy was working)

Just a quick note to let you know I am sending out more pictures =
tomorrow.

Look for them. I have not gotten through the whole list yet.

Remember Lisa has had 2 head surgeries (She is 9)

Let me know what you think when you get them.

Thanks
Deb Picht
Marshall, MN =20
rldpicht@starpoint.net

------=_NextPart_000_003E_01BE9B2A.8F5FBB20
Content-Type: text/html;
charset="iso-8859-1"
Content-Transfer-Encoding: quoted-printable

<!DOCTYPE HTML PUBLIC "-//W3C//DTD W3 HTML//EN">
<HTML>
<HEAD>

<META content=3Dtext/html;charset=3Diso-8859-1 =
http-equiv=3DContent-Type>
<META content=3D'"MSHTML 4.72.3510.1400"' name=3DGENERATOR>
</HEAD>
<BODY bgColor=3D#ffffff>
<DIV><FONT color=3D#000000 size=3D2>Hello Everyone.</FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2></FONT> </DIV>
<DIV><FONT size=3D2>We hope everyone had a wonderful Mother's Day.  =
I=20
did.  It was a Mother/Daughter bonding day (Randy was =
working)</FONT></DIV>
<DIV><FONT size=3D2></FONT> </DIV>
<DIV><FONT size=3D2>Just a quick note to let you know I am sending out =
more=20
pictures tomorrow.</FONT></DIV>
<DIV><FONT size=3D2></FONT> </DIV>
<DIV><FONT size=3D2>Look for them.  I have not gotten through the =
whole list=20
yet.</FONT></DIV>
<DIV><FONT size=3D2></FONT> </DIV>
<DIV><FONT size=3D2>Remember Lisa has had 2 head surgeries (She is =
9)</FONT></DIV>
<DIV><FONT size=3D2></FONT> </DIV>
<DIV><FONT size=3D2>Let me know what you think when you get =
them.</FONT></DIV>
<DIV><FONT size=3D2></FONT> </DIV>
<DIV><FONT size=3D2>Thanks</FONT></DIV>
<DIV><FONT size=3D2>Deb Picht</FONT></DIV>
<DIV><FONT size=3D2>Marshall, MN  </FONT></DIV>
<DIV><FONT size=3D2><A=20
href=3D"mailto:rldpicht@starpoint.net">rldpicht@starpoint.net</A></FONT><=
/DIV>
<DIV><FONT size=3D2></FONT> </DIV></BODY></HTML>

------=_NextPart_000_003E_01BE9B2A.8F5FBB20--
=========================================================================
Date:         Tue, 11 May 1999 00:59:32 EDT
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         "(Marianne Camous)" <Camous@AOL.COM>
Subject:      being out of sight, shoes, etc
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit

Brenda et all,
Thanks for the thought of us....Evan is doing well after a rough month of
April....fell down the steps April 1 with a big laceration in the middle of
his forehead, followed by the whole gang being exposed to meningitis at a
neighborhood Easter party, then Ev got pneumonia, got better, got it
again,,,now some question about his shunt and we go for recheck in 1 month.
Through it all he's been like the energizer bunny and keeps bouncing back
happy as ever and continuing to progress fantastically!!

I've been "lurking" - there are just not enough hours in the day to keep up
with email..well just to keep up. I finally got some photos from my eldest
daughter's First Communion on disk so will try to send them out if I have
enough hard drive space to load them;) Now I have to fight the little people
for computer time and space!!

Our thoughts are with y'all even if we don't comment much!!

We've done well at Target, Marshalls/TJMaxx etc for shoes- I buy any pair of
shoes larger than his present size that I see with a very wide forefoot that
is on clearance!! So far it's worked! The one's the therapists and the phys
med doc have liked the best have been from Target!! Seems to be no advantage
to the more expensive ones- they grow out of them so fast!

One thought for girls shoes- check in the back of Sew News or other
sewing/craft magazines. I think I have seen ads for kits etc to make your own
shoes. This might work for special dress shoes as a pretty alternative to the
expensive but practical and not-so-glamorous footwear for every day. I've
never tried it but always thought it's be fun....like I'd have time..in my
dreams. Might take less time than searching the stores.

Later-
Marianne
=========================================================================
Date:         Tue, 11 May 1999 01:13:23 EDT
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         "(Marianne Camous)" <Camous@AOL.COM>
Subject:      Re: Jacob's hand infection, decannulation
MIME-Version: 1.0
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In a message dated 5/10/1999 5:34:25 PM Pacific Standard Time,
coljones@PTDPROLOG.NET writes:

<< and put in a broviac or mediport to have the
antibiotics put through. >>

Evan went home from the hospital once on IV antibiotics and had a PICC. He
was just over a year old and they couldn't just tread a PICC through the skin
so the surgery resident came down and did a "cut-down" and got it in his arm.
It was much less care than a Broviac!! It can be done under local
(with/without sedation depending on the age of the child). It seems much more
humane than continual IM injections (OWWWW!) Cleaning out the area may be the
ticket- if he has a small abscess pocket, the infection will never clear up.
Also are they covering him for yeast?? After all the antibiotics, that will
be a complicating factor, especially in a war,moist area- I've seen
physicians keep treating an infection with antibiotics when the real culprit
was yeast which is only made worse by the antibiotics. Ask about that!
Also, be sure they have completely ruled out osteomyelitis- infection in the
bone. It often is the cause of recurrent infections- if an X-ray is negative,
then a bone scan may help rule that out.

As a Apert/trach family I can just imagine the celebration occurring with
Jake's decannulation!!! There must be tons more roon in the housegetting rid
of all the equipment too. Can't wait for that day!!

Marianne Camous
San Carlos, CA
Evan's (2 1/2 yrs old w/trach) mom
=========================================================================
Date:         Tue, 11 May 1999 01:49:56 -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:         Rich Thornquist <rlthorn@EARTHLINK.NET>
Subject:      Hello! It's been a long time!
MIME-Version: 1.0
Content-Type: multipart/alternative;
              boundary="------------C1CDF10458F29026C8DF58BD"

--------------C1CDF10458F29026C8DF58BD
Content-Type: text/plain; charset=us-ascii
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Hello to everyone,

It has been a couple of weeks since I have written anything and alot has
been going on. I was lurking mostly, just reading instead of
responding.

Let me first get my news out of the way......

On Wednesday, May 5, I gave birth to a beautiful baby girl. Her name is
Meghan Patricia and absolutely wonderful. Andrew doesn't seem too upset
by the new baby. I have been spending alot of quality time with him and
he understands about being gentle with the baby. He isn't used to the
baby coming with us in the car and going places, so when we get ready to
go somewhere, he says "bye" to the baby. I remind him that the baby is
coming with us and it doesn't seem to phase him too much.

I would like to respond to a few of the e-mails that I just read.

First, let me say CONGRATULATIONS to Jake. That must be so wonderful.
Andrew does not have a trache, but I'm sure if I were in your shoes, I
would be throwing a party.

With regards to the shoes, Andrew is only 2 1/2, but I think the idea
about contacting a shoe manufacturer is a great idea. We have been
purchasing all of Andrew's shoes at Stride Rite. They have extra wide
widths, but we have the same problem, there aren't many to choose from.
We did have a problem with the winter months this year because we could
not find a snow boot to fit Andrew's foot. They don't come in extra
wide widths. Andrew ended up just wearing his sneakers with two pairs
of socks. The only problem with that was that we couldn't stay out long
because his sneakers got soaked real quickly. My husband has also been
buying New Balance for years because they are the only sneaker company
to offer extra wide widths. My husband has wide feet too. We always
have to take his dress shoes or casual shoes to a shoe repair place to
have them stretched.

With regards to the "on target" discussion....Andrew was just recently
assessed by his EI team and he came out at an average of about a 28
month level and he is 32 months. They were extremely impressed with his
growth over the past 6 months. But I too believe that every child is
different and progresses at a rate that fits them. I never read that
book What to Expect the First Year. It just doesn't seem fair to say
that this is the age that things happen and your child should be here.
I don't worry about Andrew's age level anymore. I just let him be and
when he is ready to achieve things that he should for his age, then he
will.

Well, I better get going and get some sleep. I will chat some more
later.

Lynn Thornquist

--------------C1CDF10458F29026C8DF58BD
Content-Type: text/html; charset=us-ascii
Content-Transfer-Encoding: 7bit

<!doctype html public "-//w3c//dtd html 4.0 transitional//en">
<html>
Hello to everyone,
<p>It has been a couple of weeks since I have written anything and alot
has been going on.  I was lurking mostly, just reading instead of
responding.
<p>Let me first get my news out of the way......
<p>On Wednesday, May 5, I gave birth to a beautiful baby girl.  Her
name is Meghan Patricia and absolutely wonderful.  Andrew doesn't
seem too upset by the new baby.  I have been spending alot of quality
time with him and he understands about being gentle with the baby. 
He isn't used to the baby coming with us in the car and going places, so
when we get ready to go somewhere, he says "bye" to the baby.  I remind
him that the baby is coming with us and it doesn't seem to phase him too
much.
<p>I would like to respond to a few of the e-mails that I just read.
<p>First, let me say CONGRATULATIONS to Jake.  That must be so wonderful. 
Andrew does not have a trache, but I'm sure if I were in your shoes, I
would be throwing a party.
<p>With regards to the shoes, Andrew is only 2 1/2, but I think the idea
about contacting a shoe manufacturer is a great idea.  We have been
purchasing all of Andrew's shoes at Stride Rite.  They have extra
wide widths, but we have the same problem, there aren't many to choose
from.  We did have a problem with the winter months this year because
we could not find a snow boot to fit Andrew's foot.  They don't come
in extra wide widths.  Andrew ended up just wearing his sneakers with
two pairs of socks.  The only problem with that was that we couldn't
stay out long because his sneakers got soaked real quickly.  My husband
has also been buying New Balance for years because they are the only sneaker
company to offer extra wide widths.  My husband has wide feet too. 
We always have to take his dress shoes or casual shoes to a shoe repair
place to have them stretched.
<p>With regards to the "on target" discussion....Andrew was just recently
assessed by his EI team and he came out at an average of about a 28 month
level and he is 32 months.  They were extremely impressed with his
growth over the past 6 months.  But I too believe that every child
is different and progresses at a rate that fits them.  I never read
that book <u>What to Expect the First Year</u>.  It just doesn't seem
fair to say that this is the age that things happen and your child should
be here.  I don't worry about Andrew's age level anymore.  I
just let him be and when he is ready to achieve things that he should for
his age, then he will.
<p>Well, I better get going and get some sleep.  I will chat some
more later.
<p>Lynn Thornquist</html>

--------------C1CDF10458F29026C8DF58BD--
=========================================================================
Date:         Tue, 11 May 1999 09:20:32 EDT
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Yonstein@AOL.COM
Subject:      Re: BABY CONGRATS!!
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit

Dear Lynn:

Congrats to the Thornquist family on the birth of Meghan. Hope all is well
and you are getting some rest. I am sure Andrew loves being the big brother.

best wishes,

Janine Krebs
=========================================================================
Date:         Tue, 11 May 1999 08:34:56 -0600
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         baconsmith <bluenose@TELUSPLANET.NET>
Subject:      Congratulations Andrew Thornquist.
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"

Dear Andrew. Wow, you're a big brother! Well done. Tell your mommy and
daddy that they did well too. I bet your little sister is a sweet pea!
Hope you have lots of fun with her. Try to let your mom get some snoozes in.

From Pat and the Peach in Calgary

ps Meghan Patricia is a beautiful name. Did you help choose it?
=========================================================================
Date:         Tue, 11 May 1999 10:42:50 EDT
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Cristy Williams <CARLEE0604@AOL.COM>
Subject:      Re: Jacob's hand infection
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit

Colleen,

We will pray for Jacob. That must be very scary. I hope this works for him.

The Williams Family
Clyde, Cristy, and Carlee
=========================================================================
Date:         Tue, 11 May 1999 10:50:39 EDT
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Cristy Williams <CARLEE0604@AOL.COM>
Subject:      Re: Hello! It's been a long time!
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit

Lynn,

Congratulations on your baby girl. We just found out a couple of weeks ago
that I am pregnant. Carlee is 11 mos. old. Boy am I gonna have my hands
full. HAHA!! I hope Carlee will except the baby as well as your little one
did.

Take Care,
Cristy and Carlee Williams
in Florida
=========================================================================
Date:         Tue, 11 May 1999 14:52:24 -0400
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         ROBIN L HILL <CARMENRAE@PRODIGY.NET>
Subject:      Re: Hello! It's been a long time!
MIME-Version: 1.0
Content-Type: text/plain; charset=ISO-8859-1
Content-Transfer-Encoding: 7bit

Congratulations on the birth of Meghan! I am sure you are all excited,
including little Andrew! Do you think she will have those pretty red curls
like Andrew?

Best Wishes,
The Hill Family

----------
> From: Rich Thornquist <rlthorn@EARTHLINK.NET>
> To: APERT@LISTSERV.AOL.COM
> Subject: Hello! It's been a long time!
> Date: Tuesday, May 11, 1999 1:49 AM
>
Hello to everyone,

It has been a couple of weeks since I have written anything and alot has
been going on. I was lurking mostly, just reading instead of
responding.

Let me first get my news out of the way......

I would like to respond to a few of the e-mails that I just read.

First, let me say CONGRATULATIONS to Jake. That must be so wonderful.
Andrew does not have a trache, but I'm sure if I were in your shoes, I
would be throwing a party.

Well, I better get going and get some sleep. I will chat some more
later.

Lynn Thornquist
=========================================================================
Date:         Wed, 12 May 1999 19:29:55 +1200
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Howard & Ann <howrdnan@IHUG.CO.NZ>
Subject:      Re: Hello! It's been a long time!
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"

Well done Lynn and welcome Meghan Patricia (lovely name that). Congratulations to the whole family.

Howard's sister-in-law found her around-2yr-old son putting her relatively newborn twins out the back door one day - he had decided they had stayed long enough. Hopefully Andrew won't view Meghan that way!

Hugs
Ann
NZ
=========================================================================
Date:         Wed, 12 May 1999 13:53:53 -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:         Joni Stephens <athsteph@ACS.EKU.EDU>
Organization: Eastern Kentucky University
Subject:      Re: Jacob's hand infection
MIME-version: 1.0
Content-type: text/plain; charset=us-ascii
Content-transfer-encoding: 7bit

Colleen Jones wrote:
>
> Dear all,
> Jacob (almost 3 yrs old) has been battling a hand infection on and off
> since August of last year in his one web space. In January he had more
> surgery to reopen web space and hopefully clear things up. However, his
> hand has been infected 4 times since then. He has been seeing a Doc. of
> Infectious Disease since Feb and has been on 5 different antibiotics since
> January trying to clear this thing up. Well it is infected again (started
> last week). We saw the infectious disease doc today and we are at the point
> of possible IV antibiotics. The doc wanted to start them today through a
> PICC(?) line but the nurses said they wouldn't be able to get one in him
> since veins are hard to get on Jacob. We discussed the possibility of
> Intramuscular shots of antibiotic but noone seemed too excited about that.
> The doc decided to give one last oral antibiotic a try(Vantin) for a few
> weeks. If this doesn't work, we are looking at surgery to go in and clean
> the infection area out and put in a broviac or mediport to have the
> antibiotics put through. I guess where I need your help is for prayer that
> this oral antibiotic works. I figure if all of you out there can add Jacob
> to your prayer list it might just work since the antibiotics aren't (even
> though I have prayed that each one would do the trick). Maybe,just maybe
> there will be power in numbers!! Thanks in advance.
> Colleen and gang
> (PA)
Colleen:

Of course we will add you to our prayer list at several churches; we
have a very active prayer chain, as does my brother at his church. And
prayer really does work; my son is living proof of that. Hang in there,
and give Jacob a hug from all his friends in Richmond, Kentucky.

                                        Joni M. Stephens
                                        (son, Joseph)
=========================================================================
Date:         Wed, 12 May 1999 14:28:03 -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:         Joni Stephens <athsteph@ACS.EKU.EDU>
Organization: Eastern Kentucky University
Subject:      Re: Happy Mother's Day
MIME-version: 1.0
Content-type: text/plain; charset=us-ascii
Content-transfer-encoding: 7bit

Marjorie Harmon wrote:
>
> Howdy from the Ranch,
>
> I bet you all thought I disappeared from the face of the earth, well I got
> close a couple of times, but I am still here. I wanted to take this time to
> wish everyone a very special and happy Mother's Day and to remind everyone to
> give the kids an extra hug.
>
> If it isn't too much trouble I would also like to ask for some prayers for
> myself. I am having a very hard time getting through this Mother's Day. It
> seems like time has decided to stand still. But everyone tells me that the
> holidays are the worst but even I didn't realize how bad or long they could
> be.
>
> For those of you who don't know me, I lost my darling little boy BJ last
> August after a long battle with countless infections and spinal meningitis.
>
> Lots of Love,
> Marjorie
Marjorie:

Just want you to know that there are many of us who care about you very
much. Although we have never met, we know each other intimately. I
know every feeling you have experienced during your son's brief life -
the fear, joy, sadness, worry, wonder, hopefulness, dread, anxiety,
amazement, love (overwhelming love), and so much more. I and the other
Apert parents on this listserv have walked the same steps you have, and
understand what you are going through now. Just try to remember what a
precious GIFT you were given, because of the special person that YOU
were and are now. How BJ enriched your life, the things he (as do all
our Apert children) taught you about strength, and courage, and
determination, and love. And remember, you are never alone, because God
loves and cares about you. Ask Him and he will give you the strength
and grace you need to get through this difficult time in your life. I
know, because He has done that for me. I almost lost my Joseph three
times during his six-year life, and have watched him endure more than 26
surgical procedures. If there is anything I can do for you, please let
me know. I care.

                                        Love,
                                        Joni
=========================================================================
Date:         Wed, 12 May 1999 15:07:50 -0400
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Joni Stephens <athsteph@ACS.EKU.EDU>
Organization: Eastern Kentucky University
Subject:      Re: Hello! It's been a long time!
MIME-version: 1.0
Content-type: text/plain; charset=us-ascii
Content-transfer-encoding: 7bit

Rich Thornquist wrote:
>
> Hello to everyone,
>
> It has been a couple of weeks since I have written anything and alot
> has been going on. I was lurking mostly, just reading instead of
> responding.
>
> Let me first get my news out of the way......
>
> On Wednesday, May 5, I gave birth to a beautiful baby girl. Her name
> is Meghan Patricia and absolutely wonderful. Andrew doesn't seem too
> upset by the new baby. I have been spending alot of quality time with
> him and he understands about being gentle with the baby. He isn't
> used to the baby coming with us in the car and going places, so when
> we get ready to go somewhere, he says "bye" to the baby. I remind him
> that the baby is coming with us and it doesn't seem to phase him too
> much.
>
> I would like to respond to a few of the e-mails that I just read.
>
> First, let me say CONGRATULATIONS to Jake. That must be so
> wonderful. Andrew does not have a trache, but I'm sure if I were in
> your shoes, I would be throwing a party.
>
> With regards to the shoes, Andrew is only 2 1/2, but I think the idea
> about contacting a shoe manufacturer is a great idea. We have been
> purchasing all of Andrew's shoes at Stride Rite. They have extra wide
> widths, but we have the same problem, there aren't many to choose
> from. We did have a problem with the winter months this year because
> we could not find a snow boot to fit Andrew's foot. They don't come
> in extra wide widths. Andrew ended up just wearing his sneakers with
> two pairs of socks. The only problem with that was that we couldn't
> stay out long because his sneakers got soaked real quickly. My
> husband has also been buying New Balance for years because they are
> the only sneaker company to offer extra wide widths. My husband has
> wide feet too. We always have to take his dress shoes or casual shoes
> to a shoe repair place to have them stretched.
>
> With regards to the "on target" discussion....Andrew was just recently
> assessed by his EI team and he came out at an average of about a 28
> month level and he is 32 months. They were extremely impressed with
> his growth over the past 6 months. But I too believe that every child
> is different and progresses at a rate that fits them. I never read
> that book What to Expect the First Year. It just doesn't seem fair to
> say that this is the age that things happen and your child should be
> here. I don't worry about Andrew's age level anymore. I just let him
> be and when he is ready to achieve things that he should for his age,
> then he will.
>
> Well, I better get going and get some sleep. I will chat some more
> later.
>
> Lynn Thornquist
Lynn:

I agree. I was fortunate enough to have had Joseph ten years after his
older brothers, so I didn't worry about when he was supposed to be doing
what. With all the surgeries he had, I was just glad for every little
milestone, whenever it came. Now he is catching up quickly to other
kids his age, except for his fine motor skills. All kids progress
differently and at different rates; with love and attention and a little
work (and a little therapy) they will get where they need to be in their
own time.

                                        Joni
=========================================================================
Date:         Wed, 12 May 1999 20:42:58 EDT
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         GSieb91515@AOL.COM
Subject:      Re: Hello! It's been a long time!
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit

Christy,

It seems as though more congratulations are in order. Hope you are feeling
well. Can't wait to meet you all in June.

Brenda
=========================================================================
Date:         Wed, 12 May 1999 20:48:22 EDT
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         GSieb91515@AOL.COM
Subject:      Re: Jacob's hand infection
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit

Colleen,

We are sorry to hear that Jacob has been battling this stubborn infection.
We will pray specifically for Jacob to be healed by the oral antibiotics.
Good luck!

Brenda
=========================================================================
Date:         Thu, 13 May 1999 14:28:41 EDT
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Gail Montes <Gailsvm@AOL.COM>
Subject:      Re: Hello! It's been a long time!
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit

Hi Lynn,

Congratulations on the birth of Meghan! Andrew must be so pleased to have a
baby sister!

Glad you're doing well.

Talk to you soon. Gail (and Rachel)
=========================================================================
Date:         Fri, 14 May 1999 07:05:07 -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:         cgraham <cgraham@INFOAVE.NET>
Subject:      Daryl's pictures
MIME-version: 1.0
Content-type: text/plain; charset="us-ascii"

I sent out pictures of Daryl to everyone on the list on Tuesday. If you
want pictures, but didn't recieve any in the mail, let me know and I will
send you some. I have enjoyed the pictures I have recieved so far. I love
have our album to take with us to share with everyone who loves Daryl!
Hope everyone is doing fine.
We get our cast off on the 21st and I will let you guys know how
the tendon transplant did! We are hopefull that it will be a complete
sucess, but we are prepared if it is not! Talk to everyone soon!

                                        Denise Graham
=========================================================================
Date:         Fri, 14 May 1999 13:55:09 EDT
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Marilyn Williams <Mbwill43@AOL.COM>
Subject:      Re: Daryl's pictures
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit

HI DENISE AND DARYL, GOT YOUR PICTURE THIS A.M. AND WAS SO HAPPY TO GET THEM.
YOU ALL THAT HAVE SENT ME PICTURES JUST DON'T KNOW HOW MUCH I APPRECIATE IT.
I REALLY FEEL LIKE ONE OF THE FAMILY. I'M GOING TO GET SOME SNAP SHOTS OF
CARLEE, MY HUSBAND AND MYSELF AND SEND TO EVERYONE. IT MAY BE A COUPLE WEEKS
BEFORE I CAN GET THEM DONE, BUT I WILL SEND THEM AS SOON AS CAN. O.K. LOVE
MARILYN (CARLEE'S GRANNY)
=========================================================================
Date:         Fri, 14 May 1999 17:06:18 EDT
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         GSieb91515@AOL.COM
Subject:      Re: Hello! It's been a long time!
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit

Lynn--Congratulations! Way to go girl. I know it was a long haul. We can't
wait to see photos of baby Meghan. Andrew--It must be really special being a
big brother! Give your new sister a hug (gently) for us. Best wishes to
everyone and hope you all are getting some rest. We will be thinking of you.

Brenda, George, Melissa and Jonathan
Houston
=========================================================================
Date:         Fri, 14 May 1999 18:57:22 EDT
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Nodrmat26@AOL.COM
Subject:      Re: Hello! It's been a long time!
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit

Hello All~
Zoey's Mom here...I've been really depressed lately, so I have only been
reading all of the mail. Zoey was schedule for surgery this past Thursday
and developed some congestion this past Monday. We got all the way into the
pre-op waiting room when Zoey's temp shot up to 103.5 and they cancelled at
the last minute. I think the surgeons were all scrubbed up and everything!
Oh well. She's doing OK...she's on some antibiotics and prednisolone (oral
steroids). I'm very tired and having a little trouble seeing the light at
the end of the tunnel. Need new glasses, I suppose! They want to schedule
her surgery a month from now...shoot, she may be sick again! Anyway, just
thought I'd update the group. I haven't even gotten pictures together for
the picture exchange, but will do as soon as I can free up some time. Later!
Christina
San Antonio
=========================================================================
Date:         Fri, 14 May 1999 19:43:48 EDT
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Marilyn Williams <Mbwill43@AOL.COM>
Subject:      Re: Hello! It's been a long time!
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit

SORRY TO HEAR ZOEY'S SURGERY WAS PUT ON HOLD AFTER GETTING SO CLOSE, WE'LL BE
PRAYING FOR YOU BOTH. MARILYN
=========================================================================
Date:         Fri, 14 May 1999 21:33:01 EDT
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Cristy Williams <CARLEE0604@AOL.COM>
Subject:      Re: Hello! It's been a long time!
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit

Brenda,

We are looking forward to meeting everyone also. Its just weeks away! We
can't wait.

The Williams Family
=========================================================================
Date:         Fri, 14 May 1999 21:37:34 EDT
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Cristy Williams <CARLEE0604@AOL.COM>
Subject:      Re: Hello! It's been a long time!
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit

Christina,

i hope everything gets better. I can't say I know how you feel, but i
am sure its very hard having a surgery cancelled and your baby being sick.
Just want you to know we are thinking of you and Zoey. Please cheer up!!!!

Cristy and Carlee
in HOT Florida
=========================================================================
Date:         Fri, 14 May 1999 21:25:57 -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:         "Niemi, Liz" <Liz.Niemi@NMB.NORWEST.COM>
Subject:      Picture Exchange Names & Addresses
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"

Don Sears:

This is Liz Niemi. This is so embarrassing!!! You sent me the names on the
Apert Picture Exchange list in Word format, but I accidentally deleted them
yesterday! AHHGH!! Would you please re-send them to me? I have Jake's
pictures ready to go. I just need the names again!

Thanks so much! Sorry!!!!!

Liz