Hello all...
I rarely post anything here although I read every single one of your
e-mails
:)
I have a question regarding my daughter and wonder if you parents have
the
same thing. I'm weaning my daughter (2 1/2) from her crib and
into a bed
which is beside me. Since I am hard of hearing, I've never really
noticed any
sounds coming from the other crib although my husband has complained
of Sarah
constantly coughing throughout the night. Well, now I've noticed
it too. She
does not have a cold and she is not doing it during the day, but at
night she
is always coughing as if something is irritating her throat.
It's not the
deep cough of someone suffering from bronchitis but a light cough.
It wakes
her up (ugh!).
Any ideas on this?
Belinda
mother of Sarah V.
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Date: Mon, 15 Mar 1999
09:01:37 EST
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From: NephiRose@AOL.COM
Subject: Re: Nicole's Surgery
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In a message dated 3/14/99 5:34:40 PM Pacific Standard Time,
CARLEE0604@AOL.COM writes:
<< I was just
wandering how old some of the older children were when they got
their teeth
in. If you parents don't mind sharing that information.
>>
Sarah V. did not get her first two teeth until well after one years
old (14
months, I believe). When I shared this concern with a doctor,
he said not to
worry because they will all come in soon enough...the later the better
because
the jaw gets so crowded with the normal allotment of teeth. Sarah
V. now has
all of her teeth except for one on each side and her mouth is already
really
crowded! I don't know where she's gonna find the room for the
other two
(smile). I know it seems odd, but the fact that they are slow
in coming in is
a good thing.
Belinda
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Date: Mon, 15 Mar 1999
10:14:31 EST
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From: BBarn60368@AOL.COM
Subject: Re: teeth
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Cristy:
Shirley was twelve mos. before any teeth came in and at that time 4
came in
all at once! Lots of fun!
Alice in Orlando
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Date: Mon, 15 Mar 1999
10:29:35 EST
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From: Shirley Tanner
<TANRANCH@AOL.COM>
Subject: Re: teeth
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Dear Cristy,
Collin was 14 months before getting his first tooth & he got both
of the
middle bottom teeth at the same time. He drooled & chewed on his
fingers
constantly. His first teeth he lost were the first 2 that came in,
which was
about a year ago @ 6yrs. One of them is starting to come back in &
he has 3
more loose teeth. I guess he's fixing to be really snaggle toothed!
Anyone
know if his teeth being loose will have any affect on whether the cranial
surgery can be done or not? I had to take Collin in to the dentist
to be sure
there were no cavaties (thank goodness he doesn't have any!!)
before the surgery.
=========================================================================
Date: Mon, 15 Mar 1999
12:16:38 -0500
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From: Timothy Holt
<tholt@WEBTV.NET>
Subject: June Vacation
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Hi!
We have decided to go to the June vacation! We are able to go
because
of Family Support Network. They may help fund some of you who
aren't
going due to the cost of a vacation. However, we are both trained
support parents, so I am not sure if this is why. Our local office
is
letting another person attend a conference who isn't part of our group,
but a parent with a special needs child. When applying make sure
to
tell your office that it is considered a learning trip, and is
considered a conference. I hope this helps! For more information,
you
can call
1-800-852-0042. If you have any questions, e-mail me at tholt@webtv.net
and I will try to find an answer. Ask for a styphen.
I look forward to meeting everyone!
Mechelle
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<html>
<body background=
"http://members.tripod.com/~mintcar/pooh2.gif" text="brown">
<embed src=
"http://badboy.filecity.com/downloads/midi/arrested_development/everyday_people.mid"
autostart="true">
</body>
</html>
--WebTV-Mail-1387813408-357--
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Date: Mon, 15 Mar 1999
13:52:18 -0500
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Comments: RFC822 error: <W> Incorrect or
incomplete address field found and
ignored.
From: Andrea Gartner
<agartner@PEGANET.NET>
Subject: Re: teeth
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My first tooth came in when I was 6-7 months. I had some removed
when I
was about 10 due to crowding.
I'll be thinking of those who are having surgery, and wish those who
are in
recovery a quick and relaxing recovery.
-Andrea
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Date: Mon, 15 Mar 1999
15:43:38 EST
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From: Irmocat2@AOL.COM
Subject: Re: Coughing
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Belinda, this is Cathie - Teeter's mom, Teeter coughs a lot during the
night
too. She did it a lot more before she had her tonsils out.
Our kids are
prone to having obstructive sleep apnea and that might be what you
are hearing
with Sarah. Listen to her and notice if she stops breathing a
short time just
before she wakes her self up coughing. Also, look at her tonsils
and see if
they are larger than average. Our ENT said that when Teeter sleeps,
her
throat relaxes and her tongue slips back and keeps her from breathing
and then
she wakes up with a slight cough. She used to do this literally
hundereds of
times a night. She was exhaused when she woke up, because she
didn't get
enough rest at night. I don't know if this is what Sarah has,
but it's
something to watch out for.
Also, Don and I were on the Apert Chat last night and really enjoyed
it!! One
thing we decided was to have another picture exchange. I know
a lot of you
did it a while back, but I never joined in and wished I had now!!
Let's all
try to do it again since we have a lot more people on our list now.
For those
of you who do not know about it -- it is where we actually mail
pictures of
our kids to each other. I really would like a scrap book for
Teeter, and
myself of course. We would have to post our address on the list
and make
bunches of copies of our favorite photo to mail out. I don't
know if I could
find just one of Teeter that I like best. Hope you all decide
to do this
again....
Love to all, Cathie
=========================================================================
Date: Mon, 15 Mar 1999
17:23:07 -0500
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From: ROBIN L HILL
<CARMENRAE@PRODIGY.NET>
Subject: Teeth
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Hello! Just thought I would give some input on teeth. Carmen
Rae got her
first tooth when she was about 10 months old. She is now 14 months
and is
getting her seventh tooth. They seemed to be a little slow coming,
but
there is no stopping them now.
Robin Hill
P.S. Don't rush the teeth! Carmen Rae has this "nasty" habit
of crunching
them!! Yuck! It is worse than the fingernails on the chalkboard!
=========================================================================
Date: Mon, 15 Mar 1999
18:31:04 -0500
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From: Colleen Jones
<coljones@PTDPROLOG.NET>
Subject: teeth/coughing
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Jacob (2 1/2) was very late getting teeth. He still does not have
all he
should and each tooth takes forever to come in. He finally has
almost all
the bottom completely in but is still missing a lot at the top.
He drools
with the teeth and chews on his thumb a lot when he is teething (which
has
been pretty regular since he was 18 mos.) He will probably get
them all in
just in time for them to fall out!! Jacob also coughs at night but
we have
attributed a lot of it to post nasal drip cough. His nose runs
all day and
then drips to the back of the throat and collects at night. He
always
sounds chesty but when he coughs he clears. He also has sleep
obstructive
apnea and hasn't had T/A removed yet. He does require O2 when
sleeping to
keep SATs up. Hope this helps.
Colleen and gang
Snowy PA
=========================================================================
Date: Mon, 15 Mar 1999
18:50:26 -0600
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From: Randy & Deb
Picht <rldpicht@INFO.STARPOINT.NET>
Subject: Re: teeth
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Funny you should be talking about teeth tonight. My daughter Lisa
is 9
years old and we are going to the Mayo Clinic in Rochester to have
at least
7 teeth pulled because her mouth is too small and they are not all
in yet
because she did not eat till she was older. We had a G-Tube.
I hope things go well on Friday for us. She has had a cold all
winter and
is on ammoxicillin for Strep. Cross your fingers. I hope
they don't tell
us they can't do it. It has been postponed once already.
If they wait for her cold to be gone it will never get done.
Does anyone know how long of a recuperation time it will take?
Has anyone
ever had it done?
Let me know.
Thanks
Deb Picht
-----Original Message-----
From: Andrea Gartner <agartner@PEGANET.NET>
To: APERT@LISTSERV.AOL.COM <APERT@LISTSERV.AOL.COM>
Date: Monday, March 15, 1999 12:54 PM
Subject: Re: teeth
>My first tooth came in when I was 6-7 months. I had some removed
when I
>was about 10 due to crowding.
>
>I'll be thinking of those who are having surgery, and wish those who
are in
>recovery a quick and relaxing recovery.
>
>-Andrea
>
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Date: Mon, 15 Mar 1999
20:14:09 EST
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From: Yonstein@AOL.COM
Subject: Re: Teeth
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Dear Christy:
Emily, now 19 months old, still does not have a tooth yet. Every
day I keep
waiting and waiting. I will say that it doesn't stop her from
eating a thing.
Janine
New York(snowy)
=========================================================================
Date: Mon, 15 Mar 1999
20:34:13 EST
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From: Yonstein@AOL.COM
Subject: Re: FYI
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Hello All:
First of all, best wishes to all our kids going down the surgery path
this
week. It seems that one of them is always in the hospital.
I have come across two things I wanted to share with all of you.
One is an
interesting site. It's information on every licensed physician
in the United
States. It basically gives their field and schooling info.
It's www.ama-
assn.org/aps/amahg.htm.
The other is a book titled "Changed by a Child" Companion notes
for parents
of a child with a disability. It's by Barbara Gill. She
has a son with Down
Syndrome and she talks about her journey and shares it with all parents.
It's
all short passages, so it's not like reading it cover to cover.
I would
definitely recommend it, especially for our new families. I still
consider
mine to be a new family with Emily being 19 months old. Anyway,
hope you
enjoy it. I got it through Amazon. com. The bookstores
didn't have it on the
shelves.
Sorry I missed the chat last night. Had company that didn't leave
on time. I
also would love to have some updated photos and all the new ones also
for
Emily's album.
Can't wait for the June rest and relaxation. Sun and warmth is
sounding great
since we just got 7 inches of snow last night.
Best wishes and Goodnight.
Janine Krebs
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Date: Mon, 15 Mar 1999
20:47:01 EST
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From: Marilyn Williams
<Mbwill43@AOL.COM>
Subject: Re: Coughing
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IT MAY BE A LITTLE SINUS DRAINAGE THAT TICKLES HER THROAT AT NITE
=========================================================================
Date: Mon, 15 Mar 1999
20:48:56 EST
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From: Cristy Williams
<CARLEE0604@AOL.COM>
Subject: Re: Coughing
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Hello everyone,
I am definetly interested in the picture exchange. I already have pictures
of
Courtney, Carroline, and Samantha. I am working on a scrapbook for
Carlee,
also. I want her to know when she gets older that she is not alone.
Well I
hope everyone is doing great. I want to thank all of you who responed
to my
question about when these kids get teeth. Your information was greatly
appreciated. I am looking forward to everyone's pictures. When I get
your
addresses posted I will send you all a picture of Carlee 9 mos. old.
Our address is:
Cristy Williams
460 Polk Ave.
Orange Park, FL 32065
=========================================================================
Date: Mon, 15 Mar 1999
21:34:03 +0000
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From: "J. G. Lindamood"
<chanan8@JUNO.COM>
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Hello everyone!
I am really here all the time, but rarely have much to contribute.
Just
wanted you to know I had a chance to check out the clubhouse pictures
today, not to mention Teeter's page. These kids are cute!
It was fun
checking everyone out.
For those of you I have not "met" yet, my name is Joanne. I'm
34,
blonde, brown eyes and I also have Apert's. Six surgeries have
given me
thumbs and room in my skull for my brain to grow. There have
been seven
other non-related surgeries, including gall bladder removal last fall.
I'm working as a Activity Coordinator in a hospital. I basically
help
maintain the social and psychological well being of my patients with
activities. I pay attention to their interests, like one likes
crossword
puzzles, another enjoys water colors. I tell everyone I am getting
paid
to play checkers all day, but realistically, there's a lot more to
it.
On occasion I will mention my best friend, Coal. A Nanday Conure
(a
fancy name for parrot) He's my reason to get up in the mornings
and
definitely my reason to crash at night :-). He keeps me busy,
especially
when he gets ahold of his whiffle ball and challenges me to a game
of
fetch!
If you don't mind me asking, Please pray for a little guy named Kevin.
He has Down's and because of that is experiencing some stomach problems.
He had surgery today to hopefully repair the problems. His family
attend
my church and because of all the surgeries I have had, I was drawn
to the
hospital today to support mom and dad. This experience has led
me to
decide to start a ministry at my church, if one isn't already
established, where someone in addition to the pastor visits the patient
and the family while in the hospital. A care package will be
good too.
I don't know about you, but it did my heart wonders knowing someone
was
there for me and my family when I was in the hospital.
I took my final tonight, and Lord willing I am now a Director of
Activities. Notice the hint of excitement in my "voice"?
It was
apparent to me a while back I was not meant to be a "director".
I much
prefer the "hands on" service I am giving when I am a coordinator.
Now
the next question is "do I want to be a Recreational Therapist"?
That is
a whole degree, not just two classes. To stay at the hospital
and
continue as I am, I do not need to continue my education.
My boss has
discouraged continuing. I understand her view. She will
not be able to
keep me if I go on. It's something I will need to look into and
decide
on my own. It will require moving too, none of the local colleges
offer
the degree. Big decision.
Just a thought... I visited a four month old today.. he has his first
tooth. Goes to show you, there isn't a predetermined time when
a kid
gets their teeth.
Hope all is well there.
Joanne, in 45 degrees and getting warmer. in Ohio
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Date: Mon, 15 Mar 1999
21:47:22 -0800
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From: "Brent E. Young"
<beyoung@IX.NETCOM.COM>
Subject: Re: teeth
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> Hi Deb,
I recently had 8 teeth pulled, 4 being wisdom teeth and four other
teeth. I did not have a G-tube though. It was an experience I would
really like to forget. I had it right before New Years. It ruined New
Years Eve for me. I was not able to eat anything for a few days except
soft food. I missed out on some great food on New Years Eve as well.
I hope all goes well for you and your daughter and I really feel for
her.
Kelly Spadini
Roseville, Ca
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Date: Tue, 16 Mar 1999
01:16:52 +0000
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From: Shannon Waldhauer
<losmar@BELLSOUTH.NET>
Subject: Re: Coughing
MIME-Version: 1.0
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Hi everybody
I would also be interested in trading
pictures. My son would probably like
to have his own scrapbook of all his friends with apert's
Our address is:
5608 Skidaway road
Savannah, GA 31406
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Date: Tue, 16 Mar 1999
21:25:43 +1300
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From: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: Re: Coughing
Mime-Version: 1.0
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Hello Belinda
Could it be postnasal drip causing irritation? Would changing her position avoid that? (difficult at her age I know)
Maybe the night air is a bit dry for her and a humidifier of some sort could help? I know it makes a big difference with Amy when she has that irritating night-time cough - I add eucalyptus oil to the steamer.
Hope you can find a solution, a good night's sleep is important to all.
Regards
Ann
NZ
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Date: Tue, 16 Mar 1999
21:25:45 +1300
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From: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: Re: teeth
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One of the reasons we were given for our 6-month reprieve on Amy's surgery was to let her two front permanent teeth come through properly. They are coming through ABOVE the space in the middle upper jaw - there is only room for one so they must have decided not to fight it out!
Regards
Ann
NZ
>more loose teeth. I guess he's fixing to be really snaggle toothed!
Anyone
>know if his teeth being loose will have any affect on whether the
cranial
>surgery can be done or not? I had to take Collin in to the dentist
to be sure
>there were no cavaties (thank goodness he doesn't have any!!)
>before the surgery.
>
>
=========================================================================
Date: Tue, 16 Mar 1999
07:47:29 EST
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From: TFinch10@AOL.COM
Subject: Re: photo exchange
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Hi Cathie,
I'd love to do the photo exchange again. The kids grow and change in
a year
but I've also found that the photo album we made with everyone's pictures
has
been very useful at school. Last week, one of the teachers (not in
Nate's
grade) used it in a lesson about visible differences and invisible
differences. I'd love to do it again.
Jeanne in Boston, Nate's mom
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Date: Tue, 16 Mar 1999
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From: Jenngram@AOL.COM
Subject: Re: Nicole's Surgery
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Jordan didn't get his first tooth until he was10 mos....and now at 18
mos he
just got his 7th....
Jenn(Tamap/St. Pete.....moving in 5 weeks all the way to Columbus,
Ohio....buurrrrrrrrrrr, we're cold already!!!)
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Date: Tue, 16 Mar 1999
09:16:09 EST
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From: Gail Montes <Gailsvm@AOL.COM>
Subject: Re: photo exchange
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Hi Jeanne (in Boston!)
Do you live in Boston or in the outskirts? I have not been on
this listserve
long, but find it amazing there are so many families that live in
Massachusetts! We live north of Boston, in Tewksbury. I
have been on the
crouzon listserve for awhile, and I was beginning to think I was the
only
person who lived on the East Coast!
Talk to you soon. Gail
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Date: Tue, 16 Mar 1999
10:36:30 -0500
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From: Rich Thornquist
<rlthorn@EARTHLINK.NET>
Subject: Re: Coughing
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Hello to all!!
I think another picture exchange is a wonderful idea, Cathie.
I was actually
thinking about that again. I have alot of film of Andrew that
I need to have
developed, but I'm sure there is a really cute one of him (ofcourse
all of his
pictures are cute). I don't think have the old list of addresses
that we all used
before, but I believe one of us has saved it somewhere. If someone
outhere still
has the old list, we can start with that and add any new ones to it.
This is great because alot of the kids have grown up so big. Last
time we did an
exchange, some of the littlest ones were newly born. Lets get
this going.
Lynn Thornquist
6 Maple Street
Hopedale, MA 01747
p.s. my address has changed
=========================================================================
Date: Tue, 16 Mar 1999
06:52:34 -1000
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: "Joana H. Magno"
<magnomd@ALOHA.NET>
Subject: Re: photo exchange
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii; x-mac-type="54455854";
x-mac-creator="4D4F5353"
Content-Transfer-Encoding: 7bit
We have really enjoyed our photo album/scrapbook and would love to update
it!
It has been an incredible eye opener to many people, including
schools,
friends, family, neighbors, and even doctors, many
who have not even had the
opportunity to see what another child with Apert's even looks like.
Since we are going to generate a list again, can we try to format
it in a way
that keeps it fairly organized? One or two of the parents placed
their lists in
a format in which they were able to automatically generate a
mailing list with
labels? Anyone willing to do that again?
Please put us on the list!
Margaret Iucker, age 5 Birthday 11/1/93
811 Moaniala St.
Honolulu, HI 96821
>
=========================================================================
Date: Tue, 16 Mar 1999
19:54:58 +0100
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: Yngve Wallenius
<wallenius@MBOX303.SWIPNET.SE>
Subject: Re: Apert Syndrome for the novice.
In-Reply-To: <199903091156.VAA06529@hotnet.hotnet.com.au>
Mime-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
Content-Transfer-Encoding: 8bit
Hi Nicki.
If you look up Teeters page there is a page with Apert information in
Swedish, but there is also a translation so there will be no problem
to
read it. I know that everything that we write in that information folder
is
not adjustable for you - but maybe you get some new perspective.
The URL address is http://apert.org/sweden/index.htm
You have great future before you, with lots of trouble and a lot of
pleasure. To have that privilege to raise a child with apert syndrome
is
the greatest thing that happened to me - to us.
Hej då
Yngve
Yngve och Lisa Wallenius
Guldbaggestigen 1
S 611 63 Nyköping
Sweden
Tel; +46- (0)155 - 21 34 68
wallenius@mbox303.swipnet.se
=========================================================================
Date: Tue, 16 Mar 1999
16:55:47 -0500
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: ROBIN L HILL
<CARMENRAE@PRODIGY.NET>
Subject: Picture Exchange and Chat
MIME-Version: 1.0
Content-Type: text/plain; charset=ISO-8859-1
Content-Transfer-Encoding: 7bit
Definitely count us in on the picture exchange! We love our scrapbook
of
our internet friends and have found it exciting to share these beautiful
children with friends, family, etc. I was just noticing Carmen
Rae doesn't
look like the pictures I sent out anymore, so I am sure the other children
have changed and grown too! Our address is :
The Hills (Mike, Robin & Carmen Rae)
70 Woodmoor
Newnan, Georgia 30263
Also, can someone tell me how I can get in on the chatting? I
am not on
AOL and don't know anything about the other options. I have chatting
options through EXCITE on my computer, but could not find you guys.
What
do I need to do? Thanks!!!!!!
Robin Hill
=========================================================================
Date: Tue, 16 Mar 1999
18:24:39 -0600
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Judy Amerman
<jamerman@UTI.COM>
Subject: Photo exchange
MIME-Version: 1.0
Content-Type: text/plain; charset=ISO-8859-1
Content-Transfer-Encoding: 7bit
we are jumping on the bandwagon for the new photo exchange.
Judy
Nick Amerman
1035 E. Fairview
Morris, Il. 60450
age 8 5/3/90
apert syndrome and hydrocephalus
=========================================================================
Date: Tue, 16 Mar 1999
20:55:23 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: Sheila MacDonald
<SMacdo1030@AOL.COM>
Subject: Re: Photo exchange
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
Count us in on the photo exchange.........
Sheila MacDonald
79 Meridian Street
Melrose, Mass. 02176
Paige MacDonald
age 4
Apert Syndrome
=========================================================================
Date: Tue, 16 Mar 1999
21:06:28 EST
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Sheila MacDonald
<SMacdo1030@AOL.COM>
Subject: Re: Coughing
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
I'm writing down all the addresses but, I did'nt catch your name or
your son's
name could you write back and let me know.
Thanks,
Sheila
=========================================================================
Date: Tue, 16 Mar 1999
21:00:11 -0600
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Randy & Deb
Picht <rldpicht@INFO.STARPOINT.NET>
Subject: Picture Exchange
MIME-Version: 1.0
Content-Type: multipart/alternative;
boundary="----=_NextPart_000_0021_01BE6FEF.FB770220"
This is a multi-part message in MIME format.
------=_NextPart_000_0021_01BE6FEF.FB770220
Content-Type: text/plain;
charset="iso-8859-1"
Content-Transfer-Encoding: quoted-printable
This is Deb Picht from Minnesota. I would be interested in the
picture =
exchange.
Our address is:
Randy & Deb Picht
612 Soucy Drive
Marshall, MN 56258
Daughter: Lisa Marie Picht 9yrs old Born 7/29/89 (Soon to be 10)
I'm one of the new kids on the block so it sounds to me that we just
=
need to find a good picture and get many remakes and then mail them
out =
to people on the list.
IS THIS CORRECT? JUST LET ME KNOW.
THANK YOU
DEB PICHT
------=_NextPart_000_0021_01BE6FEF.FB770220
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>This is Deb Picht from =
Minnesota. I would=20
be interested in the picture exchange.</FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2></FONT> </DIV>
<DIV><FONT size=3D2>Our address is:</FONT></DIV>
<DIV><FONT size=3D2></FONT> </DIV>
<DIV><FONT size=3D2>Randy & Deb Picht</FONT></DIV>
<DIV><FONT size=3D2>612 Soucy Drive</FONT></DIV>
<DIV><FONT size=3D2>Marshall, MN 56258</FONT></DIV>
<DIV><FONT size=3D2></FONT> </DIV>
<DIV><FONT size=3D2>Daughter: Lisa Marie Picht 9yrs
old Born =
7/29/89=20
(Soon to be 10)</FONT></DIV>
<DIV><FONT size=3D2></FONT> </DIV>
<DIV><FONT size=3D2>I'm one of the new kids on the block so it
sounds to =
me that=20
we just need to find a good picture and get many remakes and then mail
=
them out=20
to people on the list.</FONT></DIV>
<DIV><FONT size=3D2></FONT> </DIV>
<DIV><FONT size=3D2>IS THIS CORRECT? JUST LET ME =
KNOW.</FONT></DIV>
<DIV><FONT size=3D2></FONT> </DIV>
<DIV><FONT size=3D2>THANK YOU</FONT></DIV>
<DIV><FONT size=3D2>DEB PICHT</FONT></DIV></BODY></HTML>
------=_NextPart_000_0021_01BE6FEF.FB770220--
=========================================================================
Date: Wed, 17 Mar 1999
00:36:42 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: Lisa Guyette
<LAM1126@AOL.COM>
Subject: PHOTO EXCHANGE
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
I would love to have my daughter and ourselves be on the photo exchange.
I
think it will be wonderful for her to have later.
Thanks
Lisa Guyette
Mail to:
Samantha Guyette
(4month)
3126 Sunset Lane
Hollywood Beach, CA 93035
=========================================================================
Date: Tue, 16 Mar 1999
23:35:42 -0700
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Ozren & Ljilja
Paravac <paravac@PRIMENET.COM>
Subject: Help me
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
I try to solve questions for my Internet class, but I have problem with
one
question. If you know the answer, please help me.
The question is:
What is Mozilla:
A)One of the moons of Jupiter
B)A cartoon cat
C)Lizard
D)Italian food that can be ordered over the web
E)More than lesszilla
F)A special version of Netscape that can be used on Nintendo
64s
G)The nickname for the NASCAR racing team that is sponsored
by Netscape
Thank You
Ljiljana Paravac
lvparava@primenet.com
=========================================================================
Date: Wed, 17 Mar 1999
07:23:16 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: TFinch10@AOL.COM
Subject: Re: picture exchange
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
Hi All,
I hope someone out there is collecting the addresses.
Please add ours!
Nate Finch
10 Field Rd.
Lexington, MA
02421
Age 8, Apert syndrome
=========================================================================
Date: Wed, 17 Mar 1999
07:57:40 -0500
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Jack and Raquel
<jara1@BELLSOUTH.NET>
Subject: Picture Exchange
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
Hi everyone,
Count us in the picture exchange, our address is:
Jack & Raquel Miller
16703 Redwood Way
Weston, FL 33326
Daugther Nicole Taylor Miller born October 3, 1997 with Apert Syndrome.
=========================================================================
Date: Wed, 17 Mar 1999
08:11:02 -0500
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Jack and Raquel
<jara1@BELLSOUTH.NET>
Subject: Nicole's Home
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
Hello again,
We are so relieved the surgery went as planned on Monday the 15th Nicole
now has 10 separate digits we are so excited. The surgery was
a success
and Nicole is doing fine. She had just started to walk about
one month
ago and her walk was still a cross between Fred Sanford and Frankenstien
so I thought that with two heavy casts on both hands she would not
be
able to walk. Boy was I wrong. She got up and started strolling
like
if nothing was on her. Still a cross between Fred Sanford and
Frankenstien but I'm sure in a couple of weeks she'll start walking
like
if she were strutting down the cat walk.
We had a chance to visit Seth Jefferson who is down here for his hand
surgery which also went well, he and Dori are coming over our house
today for a barbecue. Oh by the way my husband Jack wants everyone
to
know whenever you are down in the Miami-Ft. Lauderdale area please
give
us a call so we can have you over for a barbecue we love meeting other
Apert families and exchange notes and experiences. We haven't
had the
opportunity to meet many, but it has given us much comfort to meet
the
ones that we have it gives you a sense of hope and encouragement and
it
lets you know that you are not alone. I love this group and thank
each
and everyone of you for the support that we give each other.
P.S. Nicki is 17 months old no teeth yet......
Talk later
Raquel Miller (Sunny South Florida)
=========================================================================
Date: Wed, 17 Mar 1999
08:52:19 EST
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Irmocat2@AOL.COM
Subject: PICTURE EXCHANGE ADDRESS
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
I just talked to Don about how we can get all these names on one list.
He
said to send your address to addresses@apert.org
. The postings
will be under
www.apert.org/pictures/addresses .
He said if
you already wrote to the list and posted your address here, you do
not need to
send it again. Just the new ones who want to be on the exchange.
Don, I hope
I gave them the correct info!!!! :) I will make sure and include
Teeter this
time, too!!!!!
Cathie
=========================================================================
Date: Wed, 17 Mar 1999
09:03:52 -0500
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Don Sears <dsears@SCRS.STATE.SC.US>
Subject: Re: AOL CHATROOM
MIME-Version: 1.0
Content-Type: text/plain
If you can get to any web pages at all, Teeter's Page is still at
http://www.apert.org
Don
> -----Original Message-----
> From: Edelman Member [SMTP:CoH1862@AOL.COM]
> Sent: Friday, March 12, 1999 5:52 PM
> To: APERT@LISTSERV.AOL.COM
> Subject: Re: AOL CHATROOM
>
> My computer crashed last nite and I can't get Teeter's Page back.
Can
> someone
> help please?
> Thanks,
> Diane Youngblood
=========================================================================
Date: Wed, 17 Mar 1999
10:44:31 -0500
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Rich Thornquist
<rlthorn@EARTHLINK.NET>
Subject: Re: Picture Exchange
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
Deb,
Yes, you are correct. Some people even wrote a little story about
their
child or some kind of little note. You feel free to do whatever
you
want.
Lynn
=========================================================================
Date: Wed, 17 Mar 1999
11:17:48 -0500
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Don Sears <dsears@SCRS.STATE.SC.US>
Subject: Re: Help me
MIME-Version: 1.0
Content-Type: text/plain
Mozilla is Netscape's own internal reference or pet name for the
Netscape Navigator browser product. It's root is an older product
called Mosiac, and presumably this is a 'monster' version of Mosiac.
So
the answer is........none of the above. ----Don
> -----Original Message-----
> From: Ozren & Ljilja Paravac [SMTP:paravac@PRIMENET.COM]
> Sent: Wednesday, March 17, 1999 1:36 AM
> To: APERT@LISTSERV.AOL.COM
> Subject: Help me
>
> I try to solve questions for my Internet class, but I have problem
> with one
> question. If you know the answer, please help me.
> The question is:
> What is Mozilla:
> A)One of the moons of Jupiter
> B)A cartoon cat
> C)Lizard
> D)Italian food that can be ordered over the web
> E)More than lesszilla
> F)A special version of Netscape that can be used on Nintendo
64s
> G)The nickname for the NASCAR racing team that is sponsored
by
> Netscape
>
>
>
Thank You
>
> Ljiljana Paravac
> lvparava@primenet.com
=========================================================================
Date: Wed, 17 Mar 1999
10:38:29 -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: sanchez <juliuscsr@EARTHLINK.NET>
Subject: Re: PICTURE EXCHANGE ADDRESS
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
hi List, I was just thinking about recommending that you guys start
a
list like Cathie just mentioned she beat me to it. : ) this way
all you
have to do is check to see if your name is on the list. much easier
for
everybody . Chip sanchez Garden Grove Ca.
=========================================================================
Date: Wed, 17 Mar 1999
14:52:09 -0600
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Tingley <tstctingley@COMWARES.NET>
Subject: Re : Photo exchange
MIME-Version: 1.0
Content-Type: text/plain; charset=ISO-8859-1
Content-Transfer-Encoding: 7bit
I would love to get in on the photo exchange.
Stephanie Tingley
23695 N. 1525th St.
Chrisman, IL 61924
Carroline Tingley
10 Months 5-20-98
Apert Syndrome
P.S. Has anyone had trouble with tubes getting infected? Carroline
had
tubes put in Jan. 27 and her left ear will not clear up. Also at what
age
do they start speech therapy?
=========================================================================
Date: Wed, 17 Mar 1999
16:07:07 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: Re : Photo exchange
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
Liz Saylan
407 River Mill Circle
Roswell, Ga 30075
I am sorry I have not been responding lately so much has been
happening here
I have not had time to write back to u all. For those of u who dont
know me my
name is Liz I am 30 years old with Aperts i have pictures in the clubhouse
.
In the october archives u should be able to find my story i think?
Anyways I
will try to leep better in touch, hope all is well with everyone. Andrea
did u
have ur midface yet let me know how that went.
Take care and keep in touch everyone. You can email me privately at
LSAYLAN@AOL.COM.
Sincerly
Liz
=========================================================================
Date: Wed, 17 Mar 1999
16:19:19 -0500
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Don Sears <dsears@SCRS.STATE.SC.US>
Subject: Picture exchange and chat
MIME-Version: 1.0
Content-Type: text/plain
Hi everyone!
Just a reminder - send your picture exchange addresses directly to
addresses@apert.org and not to the listserv (to preserve your privacy).
The full list is at http://www.apert.org/pictures/addresses.
Also, Cathie and I are hard at work preparing a web-based chat area
that
we can ALL go to without downloading any software and it won't matter
wheter you are on AOL or any other service - stay tuned!!!!!!!
Don
=========================================================================
Date: Wed, 17 Mar 1999
14:34:48 -0800
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: "Brent E. Young"
<beyoung@IX.NETCOM.COM>
Subject: Re: photo exchange
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
> Hi From Sunny California,
I would also love to participate in the photo exchange, since I didn't
really participate last time. I will send out pictures as I get
addresses. My address is: 909 Woodlake Lane
Roseville, California 95661
Kelly Spadini
=========================================================================
Date: Wed, 17 Mar 1999
14:49:41 -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: "Brent E. Young"
<beyoung@IX.NETCOM.COM>
Subject: Re: Nicole's Home
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
Raquel,
I'm glad to hear that Nicole's surgery went so well. =)
Kelly Spadini
=========================================================================
Date: Thu, 18 Mar 1999
13:34:46 +1300
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: Photo Exchange
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Hi Lynn
I kept a list of the addresses but then it got confused with the birthday list. I think the Contrino family had the latest. There were over 150, from memory. Apparently we have a bug in our computer at the moment, so I wouldn't be game to do this for anyone.
By the look of a couple of the envelopes we received, some people just printed off the addresses and then sellotaped them onto the envelope - a simple and effective way without the hassles of setting up a database. I have just set up a page with a table, 3 columns across, and am copying the addresses into it as they are given.
For those who are willing to send their photos overseas, we would love to get them and we are:
Ann Luxton and Howard and Amy Esler
6 Peter Mulgrew Street
Avondale, Auckland 7
New Zealand
How about family photos this time? Some did send family photos and it was great to see the children as part of a family rather than in isolation.
Regards
Ann
NZ
=========================================================================
Date: Wed, 17 Mar 1999
14:51:03 -0800
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: rreed <rreed@CABLEONE.NET>
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
Content-Transfer-Encoding: 7bit
Hi Everybody, Maxine Reed here, I too would love to be on the photo
exchange. I try and get some out as soon as I can. I am sorry I haven't
written in awhile but I got that terrible flu again and then my Dad
came
down with pneumonia and has been in the hospital every since but is
on the
mends and will be home on firday. I wanted
=========================================================================
Date: Wed, 17 Mar 1999
21:18:47 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: Cristy Williams
<CARLEE0604@AOL.COM>
Subject: Re: photo exchange
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
I just wanted to comment on the picture exchange a few people didn't
give
their addresses. I wasn't in on the last exchange and don't have anyone's
address. So if you would post it I would love to send you a picture
of Carlee.
We have posted our address before, but I will do it again incase anyone
missed
it. I can't wait to get those pictures.
Cristy Williams
Carlee Age: 9 mos.
460 Polk Ave.
Orange Park, FL 32065
=========================================================================
Date: Wed, 17 Mar 1999
22:14:59 EST
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Sender: Information exchange and
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From: Nodrmat26@AOL.COM
Subject: Re: My Precious Zoey
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
Michael~ I just remembered something else. I had to go out
and buy shirts
that buttoned down the front (or back, I suppose) so that nothing squeezed
over her pins. She gets anxious when something touches her pins.
Good luck!
Christina
S.A.
=========================================================================
Date: Wed, 17 Mar 1999
22:16:55 EST
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From: Nodrmat26@AOL.COM
Subject: Re: My Precious Zoey
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
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Lynn~
Zoey's Mom here. Zoey never seemed to have a problem when sleeping.
She
either laid flat on her back or while sleeping, just knew to lift her
head a
little to turn to the right or left side. Kids just adjust, I
suppose!
Nite,
Christina
S.A.
=========================================================================
Date: Wed, 17 Mar 1999
22:22:27 EST
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From: Nodrmat26@AOL.COM
Subject: Re: Mid-Face Question
Mime-Version: 1.0
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<< Did Zoey have the midface? Did you
got to Dallas? Who is your doctor? Hope you don't mind the questions.
I will
probably have more after these are answered! How long did it
take for the
swelling to go down? >>
Shirley~
Yes, Zoey had her midface done (that's what you meant, right?), we
go through
the Air Force Drs here in San Antonio (I'm in the Army), so we've never
been
to Dallas. The first surgery was just to relieve Zoey's sutures
mostly, but
they did put pins in and she didn't swell at all. This time,
she was swollen
for 7 days +. Ask as many questions as you won't....glad to be
of some help.
Christina
S.A.
=========================================================================
Date: Wed, 17 Mar 1999
22:25:48 EST
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From: Nodrmat26@AOL.COM
Subject: Re: Nicole's Surgery
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
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Cristy and Carlee~
Zoey is two yrs and 2 months and only has 4 teeth. She started
getting her
very first tooth about 19-20 months...I think...gosh what a horrible
mother I
am for not remembering! :o)
Christina
S.A.
=========================================================================
Date: Wed, 17 Mar 1999
22:31:20 EST
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From: Nodrmat26@AOL.COM
Subject: Re: Coughing
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
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Cathie~
I'm about to get the girls' (Zoey and Tia) pictures taken and was thinking
of
sending them out...what a great idea! Where do we pull up the
addresses?
Christina
=========================================================================
Date: Wed, 17 Mar 1999
22:23:03 EST
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From: Nodrmat26@AOL.COM
Subject: Re: My Precious Zoey
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
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Shirley~
Zoey turned two on Jan 18!
Christina
=========================================================================
Date: Thu, 18 Mar 1999
17:34:39 +1100
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From: Carol <carolh@HOTKEY.NET.AU>
Subject: Re: photo exchange
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
Hi, would love to get more pictures was on the last exchange and
thought it was
fantastic idea as I started a book for Ashleigh. Im still missing
a few from the
first exchange. My address is
Carol Hamzsak
2 Woomera Street
Rye Victoria Australia 3941
Is it possible to get the list we had last time that was set out so
nicely and
made things easy when posting so you knew who what & Where.
Lets get to it as I
feel this is such a fantastic idea and last time reading the letters
and seeing
these fantastic photos was brilliant.
Carol
Cristy Williams wrote:
> I just wanted to comment on the picture exchange a few people didn't
give
> their addresses. I wasn't in on the last exchange and don't have
anyone's
> address. So if you would post it I would love to send you a picture
of Carlee.
> We have posted our address before, but I will do it again incase
anyone missed
> it. I can't wait to get those pictures.
>
> Cristy Williams
Carlee Age: 9 mos.
> 460 Polk Ave.
> Orange Park, FL 32065
=========================================================================
Date: Thu, 18 Mar 1999
01:44:18 EST
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From: Lisa Guyette
<LAM1126@AOL.COM>
Subject: Photo exchange and AOL Chat
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
Hi,
I hope it's ok if I just mail directly to those who posted their addresses.
As those who were on the AOL Chat found out, I get knocked off when
I'm
involved with too much activitie. i.e. Chat typing and going
to the internet,
so I won't be able to get to the address list, but I'll try.
If anyone
doesn't mind you can send me your address through my email and I'll
send a
picture of Samantha out. I would love everyone's pictures for
her scrapbook
also. Such as Cathie and Don (Teeter is such a celebrity with
my friends and
family, they knew about her before we even got out of hospital).
I had fun
tonight sending out her picture. I ran out of them so will go
tomorrow to
order more. It's time for a new photo anyway they grow
so fast.
Well we still meet on AOL Sunday's until we get another?
I won't be around
this Sunday (watching awards) but well see if anyone is on the following
week.
This Sunday is the anniversary of me finding out I was pregnant and
trying to
concentrate on last years award but too excited with the news.
This year
Samantha will be with me while I watch them. Time flies.
Tomorrow Samantha and I will go to our first cranial facial support
group.
It's in Sherman Oaks, CA. I saw one of the teenagers and his
aunt on the
Rosie O'Donnel show and they showed the group on film. He was
so inspiring
that I must have my daughter around kids like him. I'll
let you all know how
it went.
Love, Lisa Guyette
=========================================================================
Date: Thu, 18 Mar 1999
01:52:06 EST
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From: Lisa Guyette
<LAM1126@AOL.COM>
Subject: A Tip
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
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I don't know if this will help anyone else, but I live pretty far from
the
hospital where my daughter will have her surgeries. My phone
costs have
skyrocketed since her birth. I called our case manager the other
day and got
her email. I asked her questions by email, asked for the nipples
that
Samantha uses and only they have, told her what specialists we
need to see
and what days we could do it. By the next day she emailed me
that all the
appointments were coordinated, that the nipples were sent and answered
all my
questions. It was great.
Lisa Guyette
=========================================================================
Date: Wed, 17 Mar 1999
23:53:46 -0800
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From: rreed <rreed@CABLEONE.NET>
Subject: Hi Everybody Maxine here!
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
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Hi Everybody Maxine here Iam sorry that I didn't finish the last letter
that
was sent out. It wasn't suppose to be sent out, I had put it in my
out box
and when I got back to it, it got sent out by mistake. Anyway I've
been tied
out helping out my mom and being sick myself but I have read your letters,
I
would like to try and answer some questions that some of you had.
I asked my mom about seizures, if I had any when
I was little and she
said that she couldn't remember if I had. I also asked my sister who
seems
to remember more than my mom and she said that I never had any seizures,
I
hope that it helped you Heart broken Mechelle Holt in my favorite state
NC.
Now for the sleeping problem that Stephanie wrote, I don't have any
sleeping
problems that Iam aware of other than that I snore sometimes when I
have a
cold and my nose is plug up. I do have a high palate but I don't seem
to
have any speech problems or have any breathing problems. I hope that
help
you. To Lisa Guyette who wrote back on March 4 about what to say when
people
ask about your Aperts little girl Samantha, I again asked my parents
and my
sister and they both said that they just told them that I was born
that way
and that I am a normal healthy special little girl, and that most of
the
time thats all that was said. My parents never treated me as different
because to them I wasn't, because I did all the things that other kids
did
my age. I walked when most other kids did, my first tooth came in at
the
same time as other babys did, as did the rest of my teeth. My whole
family
felt that I was special but every baby in our family is special. So
I never
felt different. Still when people ask me what happened I just tell
them that
God made me different so that I can help other people with Aperts and
their
parents to get along in life. Besides (I also say we'er all different
and if
we were all alike it would be a boring life. So I would say that I
would
wait until someone would ask and as Samantha gets older let her till
them.
So times it hard on me but then I think well if they don't ask thats
their
lost. Yes, what to expect the first years from an aperts baby is trial
and
tribulations but so is having a happy normal child at any age is. I
have a
15 year old daughter who is going on 20 and wants to drive that is
giving me
alot of trial and tribulations. But Iam very happy to have her. I loved
your
letter Michael Sharrow on the insurance people getting their degrees
at
Kmart. I'll place my bet on you. Where do they get their brains. I'll
be
rooting for you and praying.Hope everything works out. Don and Cathie,
That
would be great if you can get a Chat room I wasn't sure I could get
to that
other one and Iam not sure how to use a chat room. I've never been
in one. I
would also don like to know how I can get bring up my pictures that
I sent
you. I tryed once but I wasn't sure if I was doing it right. So could
you
tell me again? I want to say a big HELLO to all the new people who
have
joined this great group. Iam Maxine Reed who has aperts and is 44 (
I know I
am old at least that what my daughter says I am) I am happliy married
comming up in June for 15 long long years. I am happy and willing to
answer
any questions that anybody has to ask me. A belated Happy Anniverary
goes to
Don and Cathie. I hope you two have many more Happy Days ahead. Iam
sending
out prayers to all that have had surgerys and who are going to have
them. My
prayers go out to the parents too. Because you need them too at these
times
when your babys are going though these surgerys. Like I said in my
other
letter I too want to get in on the picture exchange I'll send some
out as
soon as I can make some duplicates heres my address 1404 Del Mar Modesto,
Calif. 95350 Well I hope I have helped with answering some of the questions.
Take Care everybody. It's been sunny here. Happiness Maxine or Max
=========================================================================
Date: Thu, 18 Mar 1999
07:34:35 -0500
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Sender: Information exchange and
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From: Christopher.Kilner@USPTO.GOV
MIME-Version: 1.0
Content-Type: text/plain
Dear friends,
Tomorrow will be the one year anniversary of our losing Ceci, so please
keep
us in your prayers.
We are doing about as well as can be expected. Ceci's little brother
Blair
continues to keep us going and we have some comfort in the fact that
we have
another baby due in August.
We've been lurking on the listserv and trying to answer questions when
we
could, but we'll probably be unsubscribing in the next month or so,
but
please feel free to email us at mailto:kilner@worldnet.att.net anytime.
We'll get the news to you (via Don?) when our new one arrives.
All of you (and you little ones) will have a place in our hearts and
remain
in our prayers.
Peace,
Chris, Reggie, & Blair Kilner
=========================================================================
Date: Thu, 18 Mar 1999
08:33:46 -0500
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From: Jack and Raquel
<jara1@BELLSOUTH.NET>
Subject: Seth
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
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Hello everyone,
Yesterday Raquel and I spent the day with Dori and Seth. We had
a
wonderful time sharing thoughts and concerns as well as just getting
to
know each other.
Dori asked us to post a note on the listserver letting everyone know
that the surgery went well and she will be going back home on Saturday.
Seth's doctor only did one hand this time and she is anticipating
another trip to Miami for the other hand.
Thanks for all your thoughts and prayers regarding Nicki as well.
Her
surgery was also on Monday and the doctor is very optimistic.
Jack Miller
=========================================================================
Date: Thu, 18 Mar 1999
08:34:05 EST
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From: Sheila MacDonald
<SMacdo1030@AOL.COM>
Subject: Re: Chris,Reggie, and Blair
Mime-Version: 1.0
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Our thougths and prayers are with you at this very difficult time.
I knows
how hard this anniversary will be for you. My girlfriend lost
her 5 years old
daughter 3 years ago, and although the pain is still there...and always
will
be, however, it will subside a bit as time goes on. Hang in there....
we will
be thinking of you and saying our prayers!!!!!!!
Best wishes,
Sheila[Paige's mom]
=========================================================================
Date: Thu, 18 Mar 1999
10:00:19 -0500
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From: Rich Thornquist
<rlthorn@EARTHLINK.NET>
Subject: Re: Re : Photo exchange
MIME-Version: 1.0
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Stephanie,
Sorry I cannot help you with the infections after ear tubes. Andrew
never
had that problem. His ears actually become really clear after
ear tubes are
put in. As far as the Speech Therapy goes, Andrew started that
when he was
about 20 months. He had had Speech consults up until then with
every
assessment through EI. Andrew is now in playgroup through EI
and his speech
has picked up tremendously. But I do think that it all has to
do with the
child. Every child has their time for things. I have never
believed in
reading the book "What to expect the first year". Hang in there,
the words
will come soon enough.
Lynn
=========================================================================
Date: Thu, 18 Mar 1999
10:07:20 -0500
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From: Rich Thornquist
<rlthorn@EARTHLINK.NET>
Subject: Re: Photo Exchange
MIME-Version: 1.0
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Ann,
I'm making up a list as we go as well, but Don has a list that you can get off the internet and you can post your address there.
Don-- I had a problem adding information about Andrew. How do I, or can I edit my name and address section. How does someone put their address on there?
As far as family pictures, we have only one good professional one and it is a little out dated. Maybe what I will do is wait until the new baby is born before I send out any family pictures. But I will send out one of Andrew before then.
Lynn
=========================================================================
Date: Thu, 18 Mar 1999
10:10:15 -0500
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From: Rich Thornquist
<rlthorn@EARTHLINK.NET>
Subject: Re: photo exchange
MIME-Version: 1.0
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Christy,
You can get everyone's addresses from the webpage that Don and Cathie
have set
up. It is not everyone from the last time, but as people send
their addresses, it
is being updated. You can put your address on there yourself.
Lynn
=========================================================================
Date: Thu, 18 Mar 1999
06:25:36 -1000
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From: "Joana H. Magno"
<magnomd@ALOHA.NET>
Subject: Re: Photo Exchange
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii; x-mac-type="54455854";
x-mac-creator="4D4F5353"
Content-Transfer-Encoding: 7bit
If you want to make labels off of the webpage, you can get copier
label paper (which is a whole sheet without pre-cut labels), print
off the list on this paper, and cut labels that way,
rather than using scotch tape! Look for a product
like Avery #5353 !
Joana, Honolulu
=========================================================================
Date: Thu, 18 Mar 1999
11:45:46 -0500
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From: Don Sears <dsears@SCRS.STATE.SC.US>
Subject: A new website for us all
MIME-Version: 1.0
Content-Type: text/plain
Hi everyone!
There's been a lot of problems getting everyone together for chat and
lists and events, and I think I've come up with a solution. I've
created a web-based community called Apert Chat on Excite. Whether
you
are on AOL or any other internet service, you will be able to come
to
this place and chat with each other, any time, any day. There
are lots
of other features:
A calendar of events that YOU can update - put your birthdays, chat
times, surgeries.
A photo gallery that YOU can update.
Discussion boards, links to other related sites, contact lists,
announcements, private message center, all that EACH of you will be
able
to add to. Best of all, it's completely free.
Each of you will shortly be receiving an individual invitation to join
this community. This will not come through the listserv, each
will be
sent to your subscription address directly. Follow the instructions
on
how to sign up. Once most of you join, I will make the most areas
accessable to members only. Right now it will be wide open so
you can
explore as a guest.
Teeter's Page will continue to be our main page, and it will be where
each of you who wants one may have their own complete page. Nothing
will change there!!! But this new community can be the place
where all
of us can participate in a bunch of activities together.
Please sign up soon! I really want to get as many of you involved
as I
can. It will only take a few moments of your time. I suggest
you use a
single word for your Excite user id (you will also get a free Excite
mailbox!) and when you register, uncheck the boxes that put you on
all
of excite's mailing lists, so you won't get a bunch of junk mail from
now on.
Please write to me at CatNDon@apert.org if you have any questions at
all. Hoping you'll ALL sign up!!!!!
Don
=========================================================================
Date: Thu, 18 Mar 1999
12:19:24 -0500
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From: Don Sears <dsears@SCRS.STATE.SC.US>
Subject: Me again
MIME-Version: 1.0
Content-Type: text/plain
All the invitations have been sent out. If you did not receive
yours,
please let me know. If you did, and were able to sign up, what
do you
think of the community? Write back here, or better yet, start
a
discussion on the discussion board, or leave me a message on the Apert
Chat message board!!!
Don
=========================================================================
Date: Thu, 18 Mar 1999
12:33:06 EST
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From: BBarn60368@AOL.COM
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Content-transfer-encoding: 7bit
Chris, Reggie, and Blair:
I would be honored to go before God on your behalf. May He bless
you and
always make His love and care evident to you each, throughout the rest
of your
lives.
Thankyou for all of your help.
Much love,
Alice in Orlando, Florida
=========================================================================
Date: Thu, 18 Mar 1999
14:53:50 EST
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From: Lisa Guyette
<LAM1126@AOL.COM>
Subject: this and that
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
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Hi
Maxine, thank you so much for the advise. Lately I have
found that people
seem more shocked that Samantha is only four months. They say
she looks
older. I think her head size makes her look older.
I now only comment when
people seem to really notice. Like one woman saw her hands and
looked so sad.
Once I said something she looked closer and said "Oh they should be
able to
fix that." When she's in the car seat carrier they don't
notice her head,
but when we are holding her they do. It is so nice to have someone
who is an
adult with aperts letting us all know the childs side of everything.
Thanks
so much.
I'm going away for weekend. Taking Samantha to our first cranial
support
group tonight. Also a couple I know really want to babysit her
and it will be
good for me since I've never been away from her. So tomorrow
night they will
watch her and I'm going out to dinner with a friend. We'll
see what kind of
mother I am. Well I be the "I'm free" type or not hearing one
thing my friend
is saying because I'm thinking of Sam. Then we're going
to Anaheim (all this
is about two hours from our house) for her to meet a load of her cousins
for
the first time. And we'll be staying at my mom's to get to these
places
easier so Samantha will miss her dad and brother, but will be spoiled
by her
grandparents.
I'm really excited about the new "Excite" chat. Monday I'll
see if my
computer is capable of receving it. If not it will probably be
time for me to
think about fixing my computer. Last year I got the bright
idea to delete
some things to make more memory room and ended up deleting some very
important
parts of computer.
Thanks Don and Cathie for all the wonderful things you've created.
Have a good weekend everybody.
Love, Lisa and Samantha Guyette
=========================================================================
Date: Thu, 18 Mar 1999
15:43:04 -0500
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From: Don Sears <dsears@SCRS.STATE.SC.US>
Subject: One other thing or two
MIME-Version: 1.0
Content-Type: text/plain
Some people (including me) have experienced a general slowness and/or
messages that a page is not available, or that explorer can't open
a
page. The excite server is very busy during certain times of
the day,
and getting a message like this just means you have hit one of those
busy times. All you have to do is keep trying 5 or 6 times and
you will
eventually get in. Excite is a reputable company and they have
already
upgraded their equipment several times as they have grown - I have
no
doubt they will continue to do so. Take a look at their stock
prices!!!
As far as registration problems, make sure you do not have any spaces
in
your registration name or password!!!
Don
=========================================================================
Date: Thu, 18 Mar 1999
14:25:43 -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: rreed <rreed@CABLEONE.NET>
Subject: Thanks a whole Bunch
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
Content-Transfer-Encoding: 7bit
Hi Don, I just wanted to say that I finally got in to Excite. Thanks
for the
info on putting my name togather with no space. Thats what did it when
I
tryed it your way. Will there still be the listsever for Aperts Well
I gota
go I want to get back to the Excite page. Thanks again for the help.
Max
=========================================================================
Date: Thu, 18 Mar 1999
17:46:43 EST
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Yonstein@AOL.COM
Subject: Re: Seth and Nicole
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
Just wanted to wish Seth
and Nicole speedy recoveries from their surgeries.
Sounds like things went well for both of you.
Nice to be in the same hospital, huh?
Best wishes,
janine
=========================================================================
Date: Thu, 18 Mar 1999
17:45:57 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: Marjorie Harmon
<MHTeach102@AOL.COM>
Subject: Picture Exchange
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
Howdy,
I notice there is another picture exchange going. I was hoping
that maybe you
could still include us on the exchange. I have come so close to many
of you
while BJ was still with us and would like to know how all the kids
are growing
and changing. If this is not an appropriate request I apologize.
Marjorie Harmon in Texas
Marjorie Harmon
3011 Cross Trail Rd
San Antonio TX 78264
=========================================================================
Date: Thu, 18 Mar 1999
18:02:36 EST
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: BBarn60368@AOL.COM
Subject: Re: Picture Exchange
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
Marjorie:
I could never think of including you in our "family" as inappropriate.
So
glad to hear from you again.
Much love and certainly prayers,
Alice in Orlando, Florida
=========================================================================
Date: Thu, 18 Mar 1999
16:26:11 -0700
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: baconsmith <bluenose@TELUSPLANET.NET>
Subject: Re: Seth and Nicole
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Ditto this! And also to little Zoey. So glad they
are all doing well now.
Thinking of you often.
Pat and the Peach
Just wanted to wish Seth and Nicole speedy recoveries from their
surgeries.
>Sounds like things went well for both of you.
>
>Nice to be in the same hospital, huh?
>
>Best wishes,
>
>janine
>
=========================================================================
Date: Thu, 18 Mar 1999
16:30:51 -0700
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: baconsmith <bluenose@TELUSPLANET.NET>
Subject: Marjorie and the Kilners
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Just wanted these families to know that I also think of you. Especially
now
in the spring. I was just thinking about Ceci the other day,
and of course
its also the time of year that I like to go up to the big park, and
I always
think of BJ when I climb that hill.
Chris and Reggie, congratulations on your impending arrival. So
happy to
hear that. Please do let us know when the baby is here.
Special good wishes to you all.
Pat and the Peach in Calgary (springtime in the foothills --
beautiful here!)
=========================================================================
Date: Thu, 18 Mar 1999
17:37:59 -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: Michael Sharrow
<msharrow@CAMALOTT.COM>
Subject: Thank you, all
Comments: To: Crouzon Discussion List <crouzon@u.washington.edu>
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
Content-Transfer-Encoding: 7bit
Just wanted to thank everyone for keeping us in your prayers.....it
worked!
Talitha is doing great after her ear surgery. I almost cried
when she asked
me to turn down the TV last night! (tears of joy)....We got a definite
date
for the RED System and LeForte III surgery yesterday....April 19th...I'm
scared as hell (pardon the lingo)...just don't know what we'd do without
friends like y'all! When my lil one looks at me, I feel like
balling....but
the next minute, she gives me a look of "I'm ok, dad", "Everything
will be
just fine". She's soo cool....I'm a basket case...but, I try
to supress it
as much as possible in front of her...I'll never forget her courage...As
silly as it sounds...I'm leaning on her...and she's the one that has
to go
through all this.....sheesh....I'm such a wimp...Well....thanks for
letting
me let off some weight....Anyone in surgery, post or pre....we wish
you the
best...keep your head up!
Your friend, Michael (Talitha's dad)
=========================================================================
Date: Fri, 19 Mar 1999
13:58:51 +1300
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: Re: Photo Exchange
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
At 06:25 AM 18/03/99 -1000, you wrote:
>If you want to make labels off of the webpage, you can get copier
label paper (which is a whole sheet without pre-cut labels), print
off the list on this paper, and cut labels that way,
rather than using scotch tape! Look for a product
>like Avery #5353 !
And drive yourself crazy trying to separate the backing sheet!!!
Regards
Ann
NZ
=========================================================================
Date: Thu, 18 Mar 1999
18:56:35 -0800
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: "Brent E. Young"
<beyoung@IX.NETCOM.COM>
Subject: Re: Photo exchange and AOL Chat
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
Hi Lisa,
You said you wanted addresses through here, so here goes.
Kelly Spadini
909 Woodlake Lane
Roseville, California 95661
I would love to get a picture of little Samantha and I would love to
send you one of me. Pelase give everyone your address. I kind of missed
out on the last photo exchange.
Kelly
=========================================================================
Date: Thu, 18 Mar 1999
22:24:47 -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: Trevor &
April Blotske <tblotske@ROF.NET>
Subject: Surgery is a success!
MIME-Version: 1.0
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boundary="----=_NextPart_000_0018_01BE718E.217D3120";
type="multipart/alternative"
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Hello from Colorado!
Saige is now home from her first cranio-facial
surgery (they =
advanced her forehead, lifted the corners of her eyes & shaved
a lump of =
fatty tissue off the back of her head). She is only four months
old; =
therefore, she took longer than usual recovering and spent seven days
in =
the ICU. We were expecting the incredible swelling that everyone
has =
told us about and know how hard it is after any surgery to look at
the =
still, pale, almost lifeless body (this is surgery #4). Unfortunately,
=
no one had told us that not all eyes swell shut, but some pop-out and
=
swell open! And, of course, if it's a little different than the
norm, =
Saige is opt to do it. Her left eye is still swelled wide open
& =
blood-shot red. We're getting used to it now, but it was tough
to see =
the first day. Fortunately, the surgery was such a great success
that =
it is easier to praise God for His awesome healing powers than dwell
on =
an eye recovering a little slowly. Isn't today's medical technology
=
such a blessing that words just cannot describe!
We were actually at Medical City, Dallas the
same time you were, =
Michael & Talitha and are so sorry we missed you. Hopefully
we can all =
meet up another time and we will be keeping you all in our prayers
as =
her surgery arrives.
We would also like to participate in the picture
exchange and would =
love pictures of all of you. I can't wait to put faces with all
of the =
names!
=20
Love always, =20
Saige's Mom (April)
P.S. Cathy---How is Jackie recovering? We loved meeting
& visiting =
with you and were bummed we didn't get to say good-bye. I hope
she is =
adjusting well to the casts!
Trevor, April & Saige Blotske
171 Hwy. 133 #A7
Carbondale, CO 81623
Saige is 4 months old, has Aperts & was born on 11-1-98
------=_NextPart_001_0019_01BE718E.217D3120
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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><BASE=20
href=3D"file://C:\Program Files\Common Files\Microsoft =
Shared\Stationery\">
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<BODY background=3Dcid:001001be71d1$2f096140$LocalHost@default =
bgColor=3D#ffffff>
<DIV> </DIV>
<DIV> Hello from Colorado!</DIV>
<DIV><FONT style=3D"BACKGROUND-COLOR: #ffffff">
=
Saige is=20
now home from her first cranio-facial surgery (they advanced her =
forehead,=20
lifted the corners of her eyes & shaved a lump of fatty tissue
off =
the back=20
of her head). She is only four months old; therefore, she
took =
longer than=20
usual recovering and spent seven days in the ICU. We were
=
expecting the=20
incredible swelling that everyone has told us about and know how hard
it =
is=20
after any surgery to look at the still, pale, almost lifeless body
(this =
is=20
surgery #4). Unfortunately, no one had told us that not all
eyes =
swell=20
shut, but some pop-out and swell open! And, of course, if
it's a =
little=20
different than the norm, Saige is opt to do it. Her left
eye is =
still=20
swelled wide open & blood-shot red. We're getting
used to it =
now, but=20
it was tough to see the first day. Fortunately, the surgery
was =
such a=20
great success that it is easier to praise God for His awesome healing
=
powers=20
than dwell on an eye recovering a little slowly. Isn't today's
=
medical=20
technology such a blessing that words just cannot describe!</FONT></DIV>
<DIV><FONT style=3D"BACKGROUND-COLOR: #ffffff">
=
We were=20
actually at Medical City, Dallas the same time you were, Michael &
=
Talitha=20
and are so sorry we missed you. Hopefully we can all meet
up =
another time=20
and we will be keeping you all in our prayers as her surgery=20
arrives.</FONT></DIV>
<DIV><FONT style=3D"BACKGROUND-COLOR: #ffffff">
=
We would=20
also like to participate in the picture exchange and would love pictures
=
of all=20
of you. I can't wait to put faces with all of the =
names!</FONT></DIV>
<DIV><FONT style=3D"BACKGROUND-COLOR: #ffffff"> =20
</FONT></DIV>
<DIV><FONT style=3D"BACKGROUND-COLOR: #ffffff">Love always,
=
</FONT></DIV>
<DIV><FONT style=3D"BACKGROUND-COLOR: #ffffff">Saige's Mom =
(April)</FONT></DIV>
<DIV><FONT style=3D"BACKGROUND-COLOR: #ffffff"></FONT> </DIV>
<DIV><FONT style=3D"BACKGROUND-COLOR: #ffffff">P.S.
Cathy---How is =
Jackie=20
recovering? We loved meeting & visiting with you
and were =
bummed we=20
didn't get to say good-bye. I hope she is adjusting well
to the=20
casts!</FONT></DIV>
<DIV><FONT style=3D"BACKGROUND-COLOR: #ffffff"></FONT> </DIV>
<DIV><FONT style=3D"BACKGROUND-COLOR: #ffffff">Trevor, April
& Saige =
Blotske</FONT></DIV>
<DIV><FONT style=3D"BACKGROUND-COLOR: #ffffff">171 Hwy. 133 =
#A7</FONT></DIV>
<DIV><FONT style=3D"BACKGROUND-COLOR: #ffffff">Carbondale, CO
=
81623</FONT></DIV>
<DIV><FONT style=3D"BACKGROUND-COLOR: #ffffff">Saige is 4 months
old, =
has Aperts=20
& was born on 11-1-98</FONT></DIV></BODY></HTML>
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=========================================================================
Date: Fri, 19 Mar 1999
10:06:52 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: Gail Montes <Gailsvm@AOL.COM>
Subject: Re: Thank you, all
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
Michael,
So glad surgery went well. I can well understand all the ups and
downs that
we all go through with our kids. Rachel's doctors have said that
they want to
get going now with her midface advancement with the distractor (and
jaw too),
but we don't have an official date yet. I am scared to death
too! I have
heard how well other kids have done, most recently Leigh Ann!!
That makes me
feel so much better, but surgery is surgery and it's never easy for
your child
and for us parents to go through it. My thoughts and prayers
will be with all
of you in April. I know you'll keep us all informed.
Take care. Gail
=========================================================================
Date: Fri, 19 Mar 1999
12:29:46 -0500
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Don Sears <dsears@SCRS.STATE.SC.US>
Subject: Current events
MIME-Version: 1.0
Content-Type: text/plain
Hi all!
Just a note to let you all know how things are going.
First, to Maxine and any others who may share her concern, the listserv
will always and forever be here. It's our most useful tool, it's
the
fastest way to communicate between us all, and everyone can use it
without any trouble. Also the webpage will stay the same, and
continue
to grow. The new area is experimental, but will never replace
our
original tools. It's just a nice enhancement and another way
to use the
Internet.
Speaking of the new site, 21 of you have joined so far (including 2
for
Cathie and myself). We were online last night from about 9 to
11 EST.
We chatted with several members and had a great time. Judy Amerman
tried unsuccessfully to chat using Internet Explorer 3.0. We
aren't
sure but suspect she may need to upgrade her browser to a newer version.
Some of you may find the same thing to be true. You can get IE4.0
or
5.0 free at http://www.microsoft.com/windows/ie/download/windows.htm.
The Excite server is very slow sometimes - but I did some checking.
Excite has issued a service alert - see
http://www.excite.com/comm/servicealert/ that says they recognize that
the current system is overloaded and they are taking steps to correct
the problem, so hopefully soon we will be able to go to the Apert Chat
area without getting the "Server Busy" or "document contains no data"
message. For the mean time, if that happens, just keep re-trying
and
you will get in after a few tries.
Next topic: the Picture Exchange. Marjorie, we will be honored
to have
you participate. Goes without saying. As far as I am concerned
you are
a lifelong member in good standing - the same goes for the Dixons and
Kilners. For those of you new to the list, each of these families
has
lost an Apert child during the past year.
Back to the Picture Exchange. When you mail your address to
addresses@apert.org, it goes to a special folder on my computer and
I
immediately transfer the address to the web page at
http://www.apert.org/pictures/addresses. This page has no graphics
on
it, and you do not have to go through Teeter's Page to get there, so
even the slowest Internet connections should be able to pull up this
page with NO problem. If you send your address this weekend,
it will be
Monday before I process it.
Next: Updating of the web page. I've removed all of the
pictures from
the clubhouse and they are now in the individuals' respective family
folders. Write to me if you do not know the name of your family
folder
or how to get to your page directly. I am now in the process
of
updating each individual's page to include the clubhouse pictures.
New
pages already posted are Saylan, Hill, and Avdovich. The rest
are
coming soon, and I will let you know as they are completed. As
your
page is posted or updated, please look at it and let me know of any
changes you'd like made.
Yesterday I mailed out all of the photos that had been sent to me for
scanning. You should be receiving them in the next week - please
follow
up with me if you don't.
I guess that's about it for now - please check out the Excite site when
you can - it seems like it is faster today than it was yesterday, and
for those of you who have joined, don't be shy about posting birthdays
and surgeries and stuff to the calendar. The Blotske family has
already
posted a photo of Saige in the photo area!
Bye for now,
Don
Bye for now
=========================================================================
Date: Fri, 19 Mar 1999
12:36:14 -0500
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Don Sears <dsears@SCRS.STATE.SC.US>
Subject: One more thing........
MIME-Version: 1.0
Content-Type: text/plain
I'm planning a new "low graphics" version of Teeter's Page as an option
when you pull up apert.org. it will be almost entirely text based
as an
option for those of you who need faster loading. That way the
information will still be there, just not all of the little mini
pictures.
Remember too that for any of you who need computer equipment, we own
a
company that makes custom personal computers (another of my sidelines,
along with the tax work/bookkeeping/audits sideline, and fulltime
programming job). I'll be glad to sell to our Apert family at
cost.
Just write to me privately and tell me what you need - anything from
a
complete system to a new mouse.
Don
=========================================================================
Date: Fri, 19 Mar 1999
13:30:09 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: Karin Pittman
<KMea854818@AOL.COM>
Subject: Re: Surgery is a success!
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
April,
My husband & I have a 5 week old son (Mason)with Aperts.
We are trying to
figure out where to go for the surgery, since we want the best for
our son.
We are considering going to Medical City in Dallas to have his cranio-facial
surgery done. What doctors did you have? What did you think
of them? Did
they have experience with other Aperts kids?
We live in Denver. Are you also in Colorado?
Congratulations on the successful surgery!
Sincerely,
Michael & Karin Pittman
=========================================================================
Date: Fri, 19 Mar 1999
13:59:21 EST
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Yonstein@AOL.COM
Subject: Re: Surgery is a success!
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
So glad to hear Saige and Talitha are recovering well. Best wishes
for
continued speedy recovery to all our kids.
Janine Krebs
=========================================================================
Date: Fri, 19 Mar 1999
20:25:05 EST
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: GSieb91515@AOL.COM
Subject: Re: Picture Exchange
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
Marjorie-
It's so good to hear from you. We hope things are getting easier
for you
these days. We would be delighted to send a photo of our Jonathan
to you. We
would also like a photo of BJ if you have one to spare. Ceci's
photo and the
articles you wrote about BJ head up our scrapbook of our Apert friends
and we
would love to have a photo of BJ to add to your articles. Even
though we
never knew him personally he became a part of our family on a daily
basis.
You will never know how much courage I got from you when we were just
starting
out. You and your family will remain in our hearts forever.
Brenda
Houston
5226 Walnut Peak Court
Kingwood, TX 77345
=========================================================================
Date: Fri, 19 Mar 1999
20:32:05 EST
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: GSieb91515@AOL.COM
Subject: Re: Surgery is a success!
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
April,
It's wonderful to hear that Saige's surgery went well and that you are
all
home together again. You certainly have had your share of time
away in
Saige's short 4 months. We will continue to pray that her recovery
goes well
and hope to meet up with you again some time in the future. We
have 2-3 years
(hopefully no unexpected surgeries) to go before we have to deal with
the
midface stuff so we aren't spending a lot of time in Dallas these days.
Best wishes,
Brenda
Houston (looking forward to a photo)
=========================================================================
Date: Fri, 19 Mar 1999
20:56:49 EST
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: GSieb91515@AOL.COM
Subject: Re: Re : Photo exchange
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
Stephanie,
Jonathan had tubes put in last November and we have not had any problems
since
then. What does your ENT say. We were told that infections
could still incur
but would be less frequent. Jonathan started speech therapy at
18 months and
we just increased our sessions after 2 years old. He is started
to say more
now but still very delayed.
Brenda
Houston
=========================================================================
Date: Fri, 19 Mar 1999
20:57:39 EST
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: GSieb91515@AOL.COM
Subject: Re: Photo Exchange
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
Great idea Ann--Unfortunately we will have to work on that one.
It seems
we're never all available at the same time for a GOOD family photo.
I was
waiting until Jonathan's last hand surgery and all the bandages are
off before
we do the professional thing. We have another week to do after
today's visit.
But we will do an amateur shot anyway and get it out as soon as we can.
We would love to be included on everyone's list to add to the scrapbook
we
have already started from the last round. We cherish this book
and are
excited to see how our kids have changed in the last year and also
to see all
the new faces.
George, Brenda, Melissa and Jonathan Siebert
5226 Walnut Peak Court
Kingwood, TX 77345
=========================================================================
Date: Fri, 19 Mar 1999
21:03:03 EST
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: GSieb91515@AOL.COM
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
Chris, Reggie and Blair,
As I was cleaning up my office the other day Ceci just popped into my
mind.
Now I know why. I can't believe a whole year has gone by already.
We think
of her often and will continue to keep all of you in our prayers.
Congratulations on the news of your new baby. Hope things went
well for you
with the bar exams. My sister has moved to South Riding, VA and
we plan to
spend a great deal of time there this summer. I think it's about
20 minutes
from you. Our thoughts are with you as you face this difficult
day. We will
always remember your precious Ceci and you all will remain in our hearts.
Our love and prayers--
Brenda Siebert
Houston
=========================================================================
Date: Fri, 19 Mar 1999
22:36:47 -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: Trevor &
April Blotske <tblotske@ROF.NET>
Subject: Hi Pittmans!
MIME-Version: 1.0
Content-Type: multipart/alternative;
boundary="----=_NextPart_000_0038_01BE7258.F96CD3E0"
This is a multi-part message in MIME format.
------=_NextPart_000_0038_01BE7258.F96CD3E0
Content-Type: text/plain;
charset="iso-8859-1"
Content-Transfer-Encoding: quoted-printable
Karin,
Hi there! Yes, we are from Carbondale
(10 minutes from Glenwood =
Springs) and spent the first two months of Saige's life at Presbytarian
=
St. Luke's Hospital in Denver! She was almost 9 weeks premature
and =
they were great in that area, but the Aperts thing was all pretty new
to =
them. Even if they had worked with Aperts before, they were not
=
familiar with all of the various symptoms. That's when we found
Dr. =
Jeffrey Fearon at Medical City, Dallas. They currently have somewhere
=
between 24-27 Apert patients and are very knowledgable in the syndrome.
=
We began calling him while we were at PSL in Denver and within the
hour =
he was returning our phone calls and answering all of our questions.
=
We've had two surgeries with him already and are extremely pleased!
=
(The first was for a tracheostomy and eye sutures and the second her
=
cranio-facial). =20
Have you met the other Apert children in Denver
yet? Erik is 5 =
years old (I've met his mother Sandy, but not him yet) and Georgie
Mae =
is 3 years old and was recently adopted by a wonderful family!
Anyways, =
I'd love to talk with you and meet up when we are in Denver.
I'd like =
to hear more about your story!
April Blotske
970-704-9506
-----Original Message-----
From: Karin Pittman <KMea854818@AOL.COM>
To: APERT@LISTSERV.AOL.COM <APERT@LISTSERV.AOL.COM>
Date: Friday, March 19, 1999 10:40 AM
Subject: Re: Surgery is a success!
April,
My husband & I have a 5 week old son (Mason)with Aperts.
We are trying =
to
figure out where to go for the surgery, since we want the best for
our =
son.
We are considering going to Medical City in Dallas to have his =
cranio-facial
surgery done. What doctors did you have? What did you think
of them? =
Did
they have experience with other Aperts kids?
We live in Denver. Are you also in Colorado?
Congratulations on the successful surgery!
Sincerely,
Michael & Karin Pittman
------=_NextPart_000_0038_01BE7258.F96CD3E0
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 4.72.3110.7"' name=3DGENERATOR>
</HEAD>
<BODY bgColor=3D#ffffff>
<DIV><FONT color=3D#000000 face=3DGaramond size=3D4>Karin,</FONT></DIV>
<DIV><FONT color=3D#000000 face=3DGaramond size=3D4></FONT><FONT
=
face=3DGaramond=20
size=3D4> Hi there!
Yes, we are from =
Carbondale (10=20
minutes from Glenwood Springs) and spent the first two months of Saige's
=
life at=20
Presbytarian St. Luke's Hospital in Denver! She was almost
9 weeks =
premature and they were great in that area, but the Aperts thing was
all =
pretty=20
new to them. Even if they had worked with Aperts before,
they were =
not=20
familiar with all of the various symptoms. That's when we
found =
Dr.=20
Jeffrey Fearon at Medical City, Dallas. They currently have
=
somewhere=20
between 24-27 Apert patients and are very knowledgable in the =
syndrome. We=20
began calling him while we were at PSL in Denver and within the hour
he =
was=20
returning our phone calls and answering all of our questions.
=
We've had=20
two surgeries with him already and are extremely pleased!
(The =
first was=20
for a tracheostomy and eye sutures and the second her =
cranio-facial). =20
</FONT></DIV>
<DIV><FONT face=3DGaramond size=3D4>
Have you =
met the other=20
Apert children in Denver yet? Erik is 5 years old (I've met
his =
mother=20
Sandy, but not him yet) and Georgie Mae is 3 years old and was recently
=
adopted=20
by a wonderful family! Anyways, I'd love to talk with you
and meet =
up when=20
we are in Denver. I'd like to hear more about your =
story!</FONT></DIV>
<DIV><FONT face=3DGaramond size=3D4></FONT> </DIV>
<DIV><FONT face=3DGaramond size=3D4>
April=20
Blotske</FONT></DIV>
<DIV><FONT face=3DGaramond size=3D4>970-704-9506</FONT></DIV>
<DIV><FONT face=3DArial size=3D2><B>-----Original =
Message-----</B><BR><B>From:=20
</B>Karin Pittman <<A=20
href=3D"mailto:KMea854818@AOL.COM">KMea854818@AOL.COM</A>><BR><B>To:
=
</B><A=20
href=3D"mailto:APERT@LISTSERV.AOL.COM">APERT@LISTSERV.AOL.COM</A>
<<A =
href=3D"mailto:APERT@LISTSERV.AOL.COM">APERT@LISTSERV.AOL.COM</A>><BR>=
<B>Date:=20
</B>Friday, March 19, 1999 10:40 AM<BR><B>Subject: </B>Re:
Surgery is a=20
success!<BR><BR></DIV></FONT>April,<BR>My husband &
I have a 5 week =
old son=20
(Mason)with Aperts. We are trying to<BR>figure out where
to go for =
the=20
surgery, since we want the best for our son.<BR>We are considering
going =
to=20
Medical City in Dallas to have his cranio-facial<BR>surgery done.
=
What=20
doctors did you have? What did you think of them?
=
Did<BR>they have=20
experience with other Aperts kids?<BR>We live in Denver.
Are you =
also in=20
Colorado?<BR><BR>Congratulations on the successful=20
surgery!<BR><BR>Sincerely,<BR>Michael & Karin =
Pittman<BR></BODY></HTML>
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Date: Fri, 19 Mar 1999
22:30:37 -0800
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From: Richard Tait
<rjrtait@MARS.ARK.COM>
Subject: movie
Mime-Version: 1.0
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My husband and I went to the best movie the other night. It was
called,
"The Other sister". You should all see it!
Rene
=========================================================================
Date: Sat, 20 Mar 1999
08:04:56 -0500
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From: Rich Thornquist
<rlthorn@EARTHLINK.NET>
Subject: Re: Surgery is a success!
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We are so glad to hear that Saiges's surgery went so well. Seeing
your
child like that after surgery is always a shock, even if it isn't the
first time. Both of Andrew's eyes were swollen shut, never swollen
open. That is a first for me. The swelling took about 2
weeks to
completely go down. Andrew also had bruising, which took a little
longer than that. Soon everything will be back to normal.
Congratulations again on a terrific surgery.
Keep us posted.
Lynn Thornquist
=========================================================================
Date: Fri, 19 Mar 1999
21:52:52 -0500
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Comments: RFC822 error: <W> Incorrect or
incomplete address field found and
ignored.
From: Andrea Gartner
<agartner@PEGANET.NET>
Subject: NEW LAW !
MIME-Version: 1.0
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Hi everyone -
Did anyone else hear about this? I got this from the Jan-Feb newsletter
of
the Association of Birth Defect Children. If you want a copy
of it, let me
know.
TREATMENT OF CHILDREN'S DEFORMITIES ACT -
"The American Society of
Plastic and Reconstructive Surgeons (ASPRS) gave
it's full support to the Treatment of Children's Deformities Act introduced
to the U.S. House of Representatives late last year. The bill,
if passed,
would require insurance companies to pay for reconstructive procedures
for
children born with deformities.
Procedures that are most
often denied insurance coverage are associated
with cleft lip repair and nose reshaping for deformities as a result
of
cleft lip and other craniofacial abnormaltities. Surgeries to
improve the
appearance and function of abnormal body structures would be covered
under
the new law.
The hope is that the current
Congress will further address insurance
denials of treatment for children born with defects continuing the
discussion of this important issue and ultimately, passing the bill.
ASPRS
President Paul L. Schnur M.D. notes that this legislation puts the
focus
back on the needs of the patient, where it should be.
Since this has become a
national issue, many states have begun to examine
their legislation. Currently only 13 states have laws that address
insurance coverage for children with birth defects."
Statement - http://thomas.loc.gov/cgi-bin/query/z?r105:E09OC8-510:
PERSONAL NOTE-
I find it interesting, we live in a society that emphasizes beauty.
So, a
person born with a deformity decides to have surgery to fit in to society.
Yet, they get denied.
???
Is this for real!
=========================================================================
Date: Sat, 20 Mar 1999
11:22:24 -0600
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From: Michael Sharrow
<msharrow@CAMALOTT.COM>
Subject: April and Trevor
MIME-Version: 1.0
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boundary="----=_NextPart_000_009D_01BE72C3.EDAED600"
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charset="iso-8859-1"
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April and Trevor,
Melanie had told us that you were at Medical City while
we were =
there. I was going to go up to PICU to meet you, but when my
lil one =
woke up from surgery I just forgot about anything else except making
her =
comfy. I'm so glad to hear everything went well with Saige...we
think =
highly of Dr. Fearon, too, and of course, Joanne Heard in the office
is =
one of the nicest people we've ever met. She always takes great
care in =
making us stay at ease while handling all of the appointments, etc.
=
Take care...maybe we'll meet somewhere down the road.
Your friend, Michael (Talitha's dad)
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charset="iso-8859-1"
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<!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 4.72.3110.7"' name=3DGENERATOR>
</HEAD>
<BODY bgColor=3D#ffffff>
<DIV><FONT color=3D#000000 size=3D2>April and Trevor,</FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2> Melanie
had told us =
that you were=20
at Medical City while we were there. I was going to go up
to PICU =
to meet=20
you, but when my lil one woke up from surgery I just forgot about =
anything else=20
except making her comfy. I'm so glad to hear everything went
well =
with=20
Saige...we think highly of Dr. Fearon, too, and of course, Joanne Heard
=
in the=20
office is one of the nicest people we've ever met. She always
=
takes great=20
care in making us stay at ease while handling all of the appointments,=20
etc. Take care...maybe we'll meet somewhere down the =
road.</FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2>Your friend, Michael (Talitha's=20
dad)</FONT></DIV></BODY></HTML>
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Date: Sat, 20 Mar 1999
15:15:08 -0600
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From: Tingley <tstctingley@COMWARES.NET>
Subject: Myrtle Beach
MIME-Version: 1.0
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Hi everybody. Just wanted to let the one's going to Myrtle Beach
know that
we are going to. We will get to Myrtle Beach on saturday June
12th early
in the morning and leaving on June 15th. The Crown Reef said
if you have
made your reservations, call them back if you want to try to
all be on the
same floor and tell them that you would like to be on the same floor
as
Stephanie Tingley and they will try to put us all together. Cristy
&
Carlee please come and have fun with us!!!!! I checked
out the new Excite
I really like it. I will try to get on and chat tomorrow night.
Is that
9:00 Eastern time?
Stephanie & Carroline
=========================================================================
Date: Sat, 20 Mar 1999
16:39:56 -0500
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From: Ryan Bradley
<Bradleys_r@COMPUSERVE.COM>
Subject: Re: teeth
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Hi Deb:
Our daughter MIchelle had 9 teeth pulled this past summer she is 8.
She had
them done in the morning, sleep all day and woke up feeling just fine
and
ready to drink some liquids, stiches came out a week later, she is
doing
fine. We are waiting for the other teeth to come in now.
Hope surgery goes well.
Martha
Algonquin, IL
=========================================================================
Date: Sat, 20 Mar 1999
15:50:25 -0600
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From: Judy Amerman
<jamerman@UTI.COM>
Subject: Re: Myrtle Beach
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Way to go girlfriend. See you again soon!
----------
> From: Tingley <tstctingley@COMWARES.NET>
> To: APERT@LISTSERV.AOL.COM
> Subject: Myrtle Beach
> Date: Saturday, March 20, 1999 3:15 PM
>
> Hi everybody. Just wanted to let the one's going to Myrtle
Beach know
that
> we are going to. We will get to Myrtle Beach on saturday June
12th early
> in the morning and leaving on June 15th. The Crown Reef said
if you have
> made your reservations, call them back if you want to try to
all be on
the
> same floor and tell them that you would like to be on the same floor
as
> Stephanie Tingley and they will try to put us all together.
Cristy &
> Carlee please come and have fun with us!!!!! I checked
out the new
Excite
> I really like it. I will try to get on and chat tomorrow night.
Is that
> 9:00 Eastern time?
>
> Stephanie & Carroline
=========================================================================
Date: Sat, 20 Mar 1999
17:29:49 EST
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From: GSieb91515@AOL.COM
Subject: Re: NEW LAW !
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Andrea-
You are so right on! Thanks for the info.
Brenda
Houston
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Date: Sat, 20 Mar 1999
17:05:41 -0600
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From: Tingley <tstctingley@COMWARES.NET>
Subject: Re: teeth
MIME-Version: 1.0
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Martha where is Algonquin IL? I live in Chrisman IL. It
is east central
IL about 3
hours south of Chicago.
Stephanie & Carroline Tingley 10 Months Apert syndrome
Bradley <Bradleys_r@COMPUSERVE.COM>
> To: APERT@LISTSERV.AOL.COM
> Subject: Re: teeth
> Date: Saturday, March 20, 1999 3:39 PM
>
> Hi Deb:
>
> Our daughter MIchelle had 9 teeth pulled this past summer she is
8. She
had
> them done in the morning, sleep all day and woke up feeling just
fine and
> ready to drink some liquids, stiches came out a week later, she is
doing
> fine. We are waiting for the other teeth to come in now.
>
> Hope surgery goes well.
>
> Martha
> Algonquin, IL
=========================================================================
Date: Sat, 20 Mar 1999
19:05:11 -0600
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From: "Allison's: GO
USA, Inc" <gousa@GOUSAINC.COM>
Subject: Re: NEW LAW !
In-Reply-To: <199903201713.MAA20019@mercury.peganet.net>
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Hi!
If you have Adobe Acrobat, the full text of the bill in it's current
form
can be seen at
<http://frwebgate.access.gpo.gov/cgi-bin/getdoc.cgi?dbname=106_cong_bills&do
cid=f:h49ih.txt.pdf>
Mike Allison
=========================================================================
Date: Sat, 20 Mar 1999
20:31:56 EST
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From: Irmocat2@AOL.COM
Subject: Re: Myrtle Beach
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Stephanie, I am so glad you decided to come on down to Myrtle Beach
and stay
at the Crown Reef. When I called them, I requested 10th floor
(which I like
better than the 9th) and they told me I would have to wait until I
checked in
to get my room changed. Well, we are taking Teeter there on April
3rd for her
birthday for a week and I will talk to the front desk when I get there.
I
will tell them who all is coming and that we all want the same floor
and same
north tower. They have 2 towers and are working on a third.
I can't wait to
meet everyone!!!! Hopefully we will get more families to come
on down to good
ol' South Carolina!!
Much Love,
Cathie
Yes, Judy I wrote to the list again, so don't have a cow!!!! :
- )
(It suprises her everytime I write)
=========================================================================
Date: Sat, 20 Mar 1999
21:31:55 EST
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From: Sheila MacDonald
<SMacdo1030@AOL.COM>
Subject: Re: Me again
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Hi Don,
I've joined the excite web site but, I've been unable to find the Apert
chat
room....HELP. Can you give me some advise?
Thanks,
Sheila
=========================================================================
Date: Sat, 20 Mar 1999
21:44:43 EST
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From: Cristy Williams
<CARLEE0604@AOL.COM>
Subject: Re: Me again
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Hey Don,
i also have joined the excite website. But I am unable to get to Apert
chat.
What steps do I take to get there? I tried looking for it but I didn't
find
anything.
Thanks,
Cristy
In Fl
=========================================================================
Date: Sat, 20 Mar 1999
22:17:19 -0500
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From: Jack and Raquel
<jara1@BELLSOUTH.NET>
Subject: Myrtle Beach
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Hi everyone,
All this talk about Myrtle Beach is making me crazy. We weren't
planning on going since we are planning our family vacation for October
we are heading up north towards Pennsylvania and then on to Canada
for
two weeks and for a family of six it gets a little bit expensive.
So, I was wondering do any of you guys have any information on any
hotels in the not too far area in Myrtle Beach that we might stay in
for
two or three days that is less expensive?? We would love to go
up and
meet all of you, I mean it would be wonderful. I'll look up Myrtle
Beach on the Web to see if it brings up the hotels and prices.
Oh, I
almost forgot to ask, what are the dates again???
Thanks all....
Raquel Miller...
=========================================================================
Date: Sat, 20 Mar 1999
21:21:28 -0600
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From: Tingley <tstctingley@COMWARES.NET>
Subject: Re: Myrtle Beach
MIME-Version: 1.0
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Raquel I hope you can make it to Myrtle Beach! You might check
on the
internet for Myrtlebeachlive.com it has some info. Judy Amermon
is
arriving on June 9th and the Sears's are coming in on June 11th and
I will
arrive on June 12th and I am not sure when they other's will arrive.
Stephanie & Carroline Tingley IL.
----------
> From: Jack and Raquel <jara1@BELLSOUTH.NET>
> To: APERT@LISTSERV.AOL.COM
> Subject: Myrtle Beach
> Date: Saturday, March 20, 1999 9:17 PM
>
> Hi everyone,
>
> All this talk about Myrtle Beach is making me crazy. We weren't
> planning on going since we are planning our family vacation for October
> we are heading up north towards Pennsylvania and then on to Canada
for
> two weeks and for a family of six it gets a little bit expensive.
>
> So, I was wondering do any of you guys have any information on any
> hotels in the not too far area in Myrtle Beach that we might stay
in for
> two or three days that is less expensive?? We would love to
go up and
> meet all of you, I mean it would be wonderful. I'll look up
Myrtle
> Beach on the Web to see if it brings up the hotels and prices.
Oh, I
> almost forgot to ask, what are the dates again???
>
> Thanks all....
>
> Raquel Miller...
=========================================================================
Date: Sat, 20 Mar 1999
22:24:01 -0800
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From: Robin MacDonald
<macdonal@GOLDEN.NET>
Subject: Re: Myrtle Beach
MIME-Version: 1.0
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Jack and Raquel wrote:
>
> Hi everyone,
>
> All this talk about Myrtle Beach is making me crazy. We weren't
> planning on going since we are planning our family vacation for October
> we are heading up north towards Pennsylvania and then on to Canada
for
> two weeks and for a family of six it gets a little bit expensive.
>
> So, I was wondering do any of you guys have any information on any
> hotels in the not too far area in Myrtle Beach that we might stay
in for
> two or three days that is less expensive?? We would love to
go up and
> meet all of you, I mean it would be wonderful. I'll look up
Myrtle
> Beach on the Web to see if it brings up the hotels and prices.
Oh, I
> almost forgot to ask, what are the dates again???
>
> Thanks all....
>
> Raquel Miller...
Where abouts in Canada are you going/staying..and do you need any info
about hotels...attractions up here???
=========================================================================
Date: Sat, 20 Mar 1999
23:25:26 -0500
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From: Jack and Raquel
<jara1@BELLSOUTH.NET>
Subject: Re: Myrtle Beach
MIME-Version: 1.0
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We will be going to Niagara Falls which we love and do not get tired
of
seeing.. Are you guys close by? I know Canada is huge, what are
the chances
huh???
Raquel..
Robin MacDonald wrote:
> Jack and Raquel wrote:
> >
> > Hi everyone,
> >
> > All this talk about Myrtle Beach is making me crazy. We weren't
> > planning on going since we are planning our family vacation for
October
> > we are heading up north towards Pennsylvania and then on to Canada
for
> > two weeks and for a family of six it gets a little bit expensive.
> >
> > So, I was wondering do any of you guys have any information on
any
> > hotels in the not too far area in Myrtle Beach that we might stay
in for
> > two or three days that is less expensive?? We would love
to go up and
> > meet all of you, I mean it would be wonderful. I'll look
up Myrtle
> > Beach on the Web to see if it brings up the hotels and prices.
Oh, I
> > almost forgot to ask, what are the dates again???
> >
> > Thanks all....
> >
> > Raquel Miller...
> Where abouts in Canada are you going/staying..and do you need any
info
> about hotels...attractions up here???
=========================================================================
Date: Sat, 20 Mar 1999
23:41:50 -0600
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From: Judy Amerman
<jamerman@UTI.COM>
Subject: Re: Myrtle Beach
MIME-Version: 1.0
Content-Type: text/plain; charset=ISO-8859-1
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Rachel,
I will be the first to arrive with more coming on all days of the weekend.
I am coming in onJune9. As far as I can guess, most people will
arriving
Saturday and Sunday June 12-13 and staying three days to one week,
except
for me. I just couldn't get enough of that sunshine last summer
so I am
making the best of it this year.
As of now, I believe if you all come that you will be family number
nine or
ten. Nice fun party.
Hope to see you in June
Stephanie,
Let Taylor know that Nick is excited to be seeing her again. They
had such
fun at the campground last year. He is ready for round two.
Goodnight,
Judy
----------
> From: Jack and Raquel <jara1@BELLSOUTH.NET>
> To: APERT@LISTSERV.AOL.COM
> Subject: Myrtle Beach
> Date: Saturday, March 20, 1999 9:17 PM
>
> Hi everyone,
>
> All this talk about Myrtle Beach is making me crazy. We weren't
> planning on going since we are planning our family vacation for October
> we are heading up north towards Pennsylvania and then on to Canada
for
> two weeks and for a family of six it gets a little bit expensive.
>
> So, I was wondering do any of you guys have any information on any
> hotels in the not too far area in Myrtle Beach that we might stay
in for
> two or three days that is less expensive?? We would love to
go up and
> meet all of you, I mean it would be wonderful. I'll look up
Myrtle
> Beach on the Web to see if it brings up the hotels and prices.
Oh, I
> almost forgot to ask, what are the dates again???
>
> Thanks all....
>
> Raquel Miller...
=========================================================================
Date: Sun, 21 Mar 1999
09:12:44 -0700
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From: baconsmith <bluenose@TELUSPLANET.NET>
Subject: Re: Myrtle Beach
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Raquel, you are not the only one going crazy. It sounds like such
a
wonderful get together but we're definitely out of the loop.
Anyway, now
I'm curious: where in Canada are you headed --- probably Quebec
and
Ontario, right? Well, if by any small chance you happen to be
headed for
the Rockies, please do let me know. I would love to meet anyone
who heads
up in our little corner of the world.
Bye for now
Pat and the Peach
>Hi everyone,
>
>All this talk about Myrtle Beach is making me crazy. We weren't
>planning on going since we are planning our family vacation for October
>we are heading up north towards Pennsylvania and then on to Canada
for
>two weeks and for a family of six it gets a little bit expensive.
=========================================================================
Date: Sun, 21 Mar 1999
13:14:58 -0600
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From: Randy & Deb
Picht <rldpicht@INFO.STARPOINT.NET>
Subject: Re: teeth
MIME-Version: 1.0
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Martha,
Thanks for your response. We got back from Rochester yesterday
and Lisa had
10 teeth pulled. 2 on the bottom and the rest on top.
On top they pulled 6 teeth and then there were 2 more that were formed
like
teeth but they did not have roots. They described it as just
build up of
enamel. They considered it 10 total teeth. (They were shapped
like teeth)
She has 5 stitches but they will dissolve in 5 to 7 days.
We do not have to go back for follow up either. It is 4 hours
1 way and
they told us to call with any questions. He was not going
to make us drive
all that way for a 10 min appt.
She is doing good now. We have to work with the Salt water.
She is
drinking pediasure (It's like ensure for adults but this is for kids).
I
did get her to eat some tomatoe soup for dinner. That went fine.
Thanks for responding
Deb Picht
Marshall, MN
-----Original Message-----
From: Ryan Bradley <Bradleys_r@COMPUSERVE.COM>
To: APERT@LISTSERV.AOL.COM <APERT@LISTSERV.AOL.COM>
Date: Saturday, March 20, 1999 3:40 PM
Subject: Re: teeth
>Hi Deb:
>
>Our daughter MIchelle had 9 teeth pulled this past summer she is 8.
She had
>them done in the morning, sleep all day and woke up feeling just fine
and
>ready to drink some liquids, stiches came out a week later, she is
doing
>fine. We are waiting for the other teeth to come in now.
>
>Hope surgery goes well.
>
>Martha
>Algonquin, IL
>
=========================================================================
Date: Sun, 21 Mar 1999
14:22:39 EST
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From: BBarn60368@AOL.COM
Subject: Re: Myrtle Beach
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Cathie and other Myrtle Beach vacationers:
I believe we finely made up our minds to join the fun for about 3 days.
Probably will come Sat. and leave Tues. And you are right, Cathie,
South
Carolina is great! Both of my parents were born in Calhoun Falls,
S.C., and I
went to Clemson (yes, I know, your rival, if you went to Carolina).
Anyway, I
spent childhood vacations in S.C. and at Myrtle Beach. I have
cousins in
Columbia: the Pattersons: Leck, Steve, Lynne, Laura, Beth and Amy.
They went
to Flora. Their father is Grady Lesley, the state treasurer,
again. Do you
know them? I know others, that I met in school, but I won't list
them. I'll
save it for Myrtle "chat time".
Looking forward to meeting you,
Alice and Bill, (the Barnetts in Orlando), Shirley, with Apert, will
be 6 by
then, and her brother, Will, is 7.
=========================================================================
Date: Sun, 21 Mar 1999
19:01:41 EST
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From: Karin Pittman
<KMea854818@AOL.COM>
Subject: Re: Hi Pittmans!--Our Story
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Hi April,
Here's our story. Mason arrived 3 weeks early and it was a good
thing,
because with the size of his head, he wouldn't have made it out any
later! It
was a hard delivery. They prepped me for a c-section, but I was
determined to
deliver him the regular way. Afer 19 total hours of labor, finally
Mason
arrived. His head was very long. The doctor said he had
a "cone head." We
didn't think anything of it because we were warned in advance by our
Lamaze
teacher that some babies have coneheads when they are born vaginally.
So,
after the nurses sucked him out & whisked him away to the nursery,
the doctor
returned and told us that she thought our son had Downs Syndrome.
She said
that it was because of the enlarged head and the slanty eyes.
We didn't
believe her. We spent the following night trying to cope with
what had just
happened--a very hard delivery and the news that our first child would
probably be mentally retarded.
The next morning (after almost no sleep), Mason was diagnosed with Aperts
Syndrome. I had looked forward to breastfeeding or at least holding
my baby
after he was delivered. I went to the nursery to see him and
the doctor there
stuck a small catheter up his nostrils to see if he could breathe through
both
nostrils. It was hard to see myt newborn scream like that.
He then had a
bloody nose and I just hoped the doctor knew what he was doing.
I don't trust
doctors in the first place, so this started out hard. It turned
out that the
openings were very small. The doctor recommended that we transfer
Mason to
Rose hospital because they had a Neonatal ICU there. So, we went
there noon
that day. During Mason's 5 day stay, we met with a geneticist
who told us
what Aperts was, and a cranio-facial guy who nobody knows, Dr Chowdhury.
Dr
Scott, a hand doctor stopped by when we weren't there and said his
hands would
be fine and call in a year.
We took mason home. He never was seen by an ENT. He snored
every night so
loud, he woke himself up, so none of us got any sleep and we were afraid
he
couldn't breathe. We took him to his pediatrician and he was
very concerned
about his nose, so he told us about Dr Kenny Chan at Denver Childrens
hospital. We saw him and he scheduled surgery for the next day
to put stints
in his nose to increase the size of his nose openings. That was
3 weeks ago
and he will remove the stints in 4 weeks. That surgery was horrifying.
I
cried all day. Nothing made sense. I thought Mason was
going to come out
"normal" and to me he was. I was in denial that anything was
wrong. After
talking with a social worker there, I began to come to grips with what
was
going on.
Now, we are taking one day at a time. Things are getting better.
We took
Mason off of cow's milk formula and are giving him an Enfamil hypoallergenic
formula and we are finally getting some sleep. He was crying
whenever he was
awake. His nose was so congested and he had gas all the time.
Now he is
sleeping 4 hours at a time and he's a happy baby!
Our next step is trying to figure out how to afford flying to Medical
City and
the expenses of staying there while he is having his first head surgury.
We
still need to do the first consultation with a doctor there.
Whew! It's been
a difficult 5 weeks.
So that's our story. Thank you for responding. It means so much to us.
I've met Erik and Sandy. I haven't talked to Georie Mae's parents
yet. And
yes, we would love to meet with you all when you are in town!
Here's our
phone # 303.306.6531.
Sincerely,
Michael and Karin Pittman
=========================================================================
Date: Sun, 21 Mar 1999
17:24:37 -0800
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From: Thomas Troudt
<ttroudt@SPRYNET.COM>
Subject: Hi to the Littmans
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Hi Michael, Karin, and Mason,
We briefly met at Dr. Chan's office at Children's
hospital. I am so
glad to hear that you have found the listserve family and hope that
you
enjoy it as much as we do. It is so wonderful to have so much
information
that others can share. How is your little guy doing? I
have thought of him
often and have wondered how you were. My best wishes and keep
us informed
on how Mason is! Diana Troudt in Greeley, Co.
=========================================================================
Date: Sun, 21 Mar 1999
19:34:41 EST
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From: Yonstein@AOL.COM
Subject: Re: Hi Pittmans!--Our Story
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Welcome to the Pittmans and Mason. We are the Krebs family Brian,
Janine
Nicholas and Emily (19 months with Apert) from New York.
The beginning is very hard and difficult, but eventually it all comes
together
and you can just enjoy having a baby. I sound like it's been
so long and Em
is not even two, but it does seem so long ago.
I am sure you will find this list as helpful and supportive as I have.
It's
like a second family.
Bes
=========================================================================
Date: Sun, 21 Mar 1999
19:36:55 EST
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From: Yonstein@AOL.COM
Subject: Re: Apert Chat Community
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Hello to all:
I did the same thing and couldn't find it either. You have to
go to
excite.com/join.cgi?auth+C107319S804904. That get's you into
the Apert Chat
community.
Good luck,
Janine
=========================================================================
Date: Sun, 21 Mar 1999
19:39:09 EST
Reply-To: Information exchange and Internet
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Sender: Information exchange and
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From: Gail Montes <Gailsvm@AOL.COM>
Subject: Re: Hi Pittmans!--Our Story
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Hi Michael and Karin,
I was touched by your story. I remember when my daughter, Rachel,
was born
and all that we went through for the first year (she is now 4).
She doesn't
have Aperts, but has a craniofacial syndrome that they have not been
able to
put a name to. We were on an emotional rollercoaster for that
first year. I
have been on the crouzon support listserve and that was extremely helpful
to
me, although I did not find that one until Rachel was three.
Thankfully, one
of Rachel's doctors was very upfront and helpful, always telling us
to take
one step at a time (and he still tells us, and I'm sure countless others,
that).
Although, I have only just subscribed to this listserve, it seems like
a very
supportive group of people and I'm sure it will be of help to you.
It seems
to me that there are many people that go to Medical Cities (is that
the name?)
for their child's care and I've heard nothing but good things about
it. We
live in the Boston area, and that is where Rachel receives her care.
Good luck with Mason. If he is anything like the rest of the kiddos
I hear
about, he will amaze you with his resiliency!
Take care. Gail Montes
=========================================================================
Date: Sun, 21 Mar 1999
20:37:57 EST
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From: Cristy Williams
<CARLEE0604@AOL.COM>
Subject: Re: Myrtle Beach
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Raquel,
Hey we hope to get to go to Myrtle Beach too. I think it would be great
for us
all to get together. You guys also live in Florida. We live in Orange
Park,
Fl. Close to Jacksonville. I think Carlee and Nicole look a lot alike.
Well I
sure hope to see you all in June.
Take Care,
Cristy and Carlee (9 mos. old)
=========================================================================
Date: Sun, 21 Mar 1999
20:45:11 EST
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From: Nodrmat26@AOL.COM
Subject: Zoey
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Hello everyone~
I should take notes as I read all my mail; I'm bad with names.
To those
children who had surgeries and are OK and either home or on their way
home....congratulations!
There's no date set, but Zoey will be having her second "head" surgery
in May.
and...I've waited a loooong time to post this.....ZOEY'S WALKING!!!!!
She's 2
yrs and 2 mos and she's still just experimenting, but hey...that's
a start!!!
I'm so excited, I've waited so long. Praise the Lord.
I don't have time tonight, but will try the Excite thing hopefully sometime
this week.
That's all I have.
Goodnight,
Christina (San Antonio)
=========================================================================
Date: Sun, 21 Mar 1999
21:23:46 -0800
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From: Robin MacDonald
<macdonal@GOLDEN.NET>
Subject: Niag. Falls.
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Raquel..sorry tried to send a private e-mail..didn't work..we live only
an hour or so from the falls..when are you coming?
=========================================================================
Date: Sun, 21 Mar 1999
21:55:45 -0600
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From: Randy & Deb
Picht <rldpicht@INFO.STARPOINT.NET>
Subject: Re: Hi Pittmans!--Our Story
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Karen,
I have been there and I know it is not easy. My daughter Lisa
is now 9
years old and gone through many surgeries. I think we all go
through denial
at first but we all had to take 1 day at a time. Lisa was hospitalized
for
6 1/2 months. She never did bottle because her airways were very
small.
Lisa was on a G-Tube for years because she could not breathe, suck
or
swallow all at once. She is still a mouth breather. She
was 8 weeks
premature.
As far a helping you with medical bills we were fortunate. Minnesota
has
Medical Assistance. What our insurance did not pay MA picked
up. Believe
me she is already well over 1 Million dollars. Our social worker at
the
hospital were Lisa was born (that was South Dakota) got everything
set up
for us. The social worker called our local agency here.
All I had to do is
sign papers. See if your state has something like that.
We were always
told not to feel bad about Lisa being on MA because we have always
worked
and we in a roundabout way were paying for it and that is what MA is
supposed to be for. But being in the hospital that long you can
about
imagine what the total dollar amount was on her care.
Also try the March of Dimes. Children's Miracle Network in your
area.
Check out these resourses. (Just a suggestion)
Lisa was our 1st child also and she is our only child. Hang in
there it
does get easier. The initial shock is hard.
This listserv is wonderful. There are alot of good people on it.
I don't
always reply but it is good to know that people really do care.
Deb Picht
rldpicht@starpoint.net
-----Original Message-----
From: Karin Pittman <KMea854818@AOL.COM>
To: APERT@LISTSERV.AOL.COM <APERT@LISTSERV.AOL.COM>
Date: Sunday, March 21, 1999 6:02 PM
Subject: Re: Hi Pittmans!--Our Story
>Hi April,
>Here's our story. Mason arrived 3 weeks early and it was a good
thing,
>because with the size of his head, he wouldn't have made it out any
later!
It
>was a hard delivery. They prepped me for a c-section, but I
was determined
to
>deliver him the regular way. Afer 19 total hours of labor, finally
Mason
>arrived. His head was very long. The doctor said he had
a "cone head."
We
>didn't think anything of it because we were warned in advance by our
Lamaze
>teacher that some babies have coneheads when they are born vaginally.
So,
>after the nurses sucked him out & whisked him away to the nursery,
the
doctor
>returned and told us that she thought our son had Downs Syndrome.
She said
>that it was because of the enlarged head and the slanty eyes.
We didn't
>believe her. We spent the following night trying to cope with
what had
just
>happened--a very hard delivery and the news that our first child would
>probably be mentally retarded.
>
>The next morning (after almost no sleep), Mason was diagnosed with
Aperts
>Syndrome. I had looked forward to breastfeeding or at least
holding my
baby
>after he was delivered. I went to the nursery to see him and
the doctor
there
>stuck a small catheter up his nostrils to see if he could breathe
through
both
>nostrils. It was hard to see myt newborn scream like that.
He then had a
>bloody nose and I just hoped the doctor knew what he was doing.
I don't
trust
>doctors in the first place, so this started out hard. It turned
out that
the
>openings were very small. The doctor recommended that we transfer
Mason to
>Rose hospital because they had a Neonatal ICU there. So, we
went there
noon
>that day. During Mason's 5 day stay, we met with a geneticist
who told us
>what Aperts was, and a cranio-facial guy who nobody knows, Dr Chowdhury.
Dr
>Scott, a hand doctor stopped by when we weren't there and said his
hands
would
>be fine and call in a year.
>
>We took mason home. He never was seen by an ENT. He snored
every night so
>loud, he woke himself up, so none of us got any sleep and we were
afraid he
>couldn't breathe. We took him to his pediatrician and he was
very
concerned
>about his nose, so he told us about Dr Kenny Chan at Denver Childrens
>hospital. We saw him and he scheduled surgery for the next day
to put
stints
>in his nose to increase the size of his nose openings. That
was 3 weeks
ago
>and he will remove the stints in 4 weeks. That surgery was horrifying.
I
>cried all day. Nothing made sense. I thought Mason was
going to come out
>"normal" and to me he was. I was in denial that anything was
wrong. After
>talking with a social worker there, I began to come to grips with
what was
>going on.
>
>Now, we are taking one day at a time. Things are getting better.
We took
>Mason off of cow's milk formula and are giving him an Enfamil
hypoallergenic
>formula and we are finally getting some sleep. He was crying
whenever he
was
>awake. His nose was so congested and he had gas all the time.
Now he is
>sleeping 4 hours at a time and he's a happy baby!
>
>Our next step is trying to figure out how to afford flying to Medical
City
and
>the expenses of staying there while he is having his first head surgury.
We
>still need to do the first consultation with a doctor there.
Whew! It's
been
>a difficult 5 weeks.
>
>So that's our story. Thank you for responding. It means
so much to us.
>
>I've met Erik and Sandy. I haven't talked to Georie Mae's parents
yet.
And
>yes, we would love to meet with you all when you are in town!
Here's our
>phone # 303.306.6531.
>
>Sincerely,
>Michael and Karin Pittman
>