> Finally recieved the "denial" letter from the insurance co. today....Get
a
> load of these weisenheimers! They go on to say....
> Holy cow! Where did these people get their degrees? KMART?
Degree? What degree? The last time I had to talk to someone
from
the insurance company, I wasn't convinced she was a HS grad.
BTW, if
nobody else has said it yet, ask your insurance company for a case
manager. They'd better get a clue that this will save them time
and
money -- and you lots of headaches.
Judy Gibson
jgibson2@erols.com
=========================================================================
Date: Mon, 8 Mar 1999
02:08:38 EST
Reply-To: Information exchange and Internet
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From: Mary Bresnahan
<Munch35738@AOL.COM>
Subject: Re: What a joke!
Mime-Version: 1.0
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Good luck it took me over two years to have them pay. Mary
=========================================================================
Date: Mon, 8 Mar 1999
21:17:36 +1300
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From: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: Re: Shawn's Mid-Face
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Good luck to you all Mike. One of our families has recently got out of hospital (first one done in NZ) with the device and the child is looking great and apparently the turning doesn't hurt at all. They are videoing the results regularly.
Regards
Ann
NZ
At 09:17 PM 7/03/99 -0600, you wrote:
>Hi All,
>
>Shawn made it through his first midface surgery, and now has the device
>inside. We start turning the device at mid week. It has
been a long 4
>days. Shawn is doing fine, although tired and frustrated.
>
>Have a nice week,
>
>Mike Allison
>
>
=========================================================================
Date: Mon, 8 Mar 1999
07:07:41 -0600
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From: "Horning, Bob
D (MN14)" <Horning_Bob@HTC.HONEYWELL.COM>
Subject: Re: What a joke!
MIME-Version: 1.0
Content-Type: text/plain
Michael,
The rejection letter you got sounds a lot like the ones we've seen that
relate to oral surgery and related procedures (you'll get to that in
a few
years). Insurance companies think oral surgery is a dental expense,
and
dental insurance thinks it's not something they should pay very much
for.
After some fighting they usually split up the various costs.
It ends up
being a mess. Anyway, it sounds like your opponent is viewing
this as a
dental/oral procedure. Tell them this is not dental, it is a
medical
procedure due to skull deformities. Can't guarantee success,
but at least
it will put them on the right page.
Bob Horning
=========================================================================
Date: Mon, 8 Mar 1999
08:15:47 -0600
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From: Carol Graves
<tcgraves@BELLSOUTH.NET>
Subject: Re: What A Joke
MIME-Version: 1.0
Content-Type: multipart/alternative;
boundary="----=_NextPart_000_0016_01BE693B.DEC211C0"
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It may also help to send in photos to the pre-auth dept.
Our Dr. =
submitted close up of the mouth, profiles, straight on and from the
=
skull looking downward at the face. Just a suggestion,
and we also =
found that getting a case manager helped as others have suggested.
------=_NextPart_000_0016_01BE693B.DEC211C0
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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>It may also help to send
in =
photos to the=20
pre-auth dept. Our Dr. submitted close up of the mouth, profiles,
=
straight=20
on and from the skull looking downward at the face. Just
a=20
suggestion, and we also found that getting a case manager
helped =
as others=20
have suggested.</FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2></FONT> </DIV></BODY></HTML>
------=_NextPart_000_0016_01BE693B.DEC211C0--
=========================================================================
Date: Mon, 8 Mar 1999
11:57:29 -0500
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From: Don Sears <dsears@SCRS.STATE.SC.US>
Subject: Re: Questions about your page.
Comments: To: "RBHYahn@aol.com" <RBHYahn@aol.com>
MIME-Version: 1.0
Content-Type: text/plain
Hi Becky, thanks for writing to us. I don't have any direct links
to a
Pfeiffer site. I assume you've tried the usual search engines
on the
net. I will put this out for our listserv folks who are very
knowledgable about other sites - folks, please if you find something
send it directly to Becky and send a cc to me. Thanks!
Don
> -----Original Message-----
> From: RBHYahn@aol.com [SMTP:RBHYahn@aol.com]
> Sent: Tuesday, March 02, 1999 6:37 PM
> To: catndon@apert.org
> Subject: Questions about your page.
>
> Hi!! My name is Becky. I recently found your web site and I
was
> wondering if
> you had any info on a Pfeiffer's Syndrome site similar to yours?
We
> have a
> three year old that was born with Pfeiffer's Syndrom Type II with
> Cloverleaf
> skull . I have contacted some parents of children with this
syndrome
> but I
> have been unable to find a decent web site.
> Your help is greatly appreciated . Oh yes, Your daughter
is
> beautiful!!!!:O)
> Thanks for your time
> Becky Yahn
=========================================================================
Date: Mon, 8 Mar 1999
14:07:30 EST
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From: Marilyn Williams
<Mbwill43@AOL.COM>
Subject: Re: Shawn's Mid-Face
Mime-Version: 1.0
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hi so glad Shawn is doing great keep up the good work we'll be praying
for you
all Marilyn
=========================================================================
Date: Mon, 8 Mar 1999
23:49:44 EST
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From: Lisa Guyette
<LAM1126@AOL.COM>
Subject: Re: AOL and other stuff
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It is so great to hear that Carlee and Shawn's procedures last week
went well.
Please keep us posted on the results.
Four of us met on AOL Sunday night for a private chat. It was
really nice.
We are going to try it again next Sunday at 6:00 pacific, 9:00 eastern.
The
8:00 p.m. was too early. Hope to see others there.
Love, Lisa Guyette
=========================================================================
Date: Tue, 9 Mar 1999
22:20:34 -0500
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From: tony zieth <zieth@HOTNET.COM.AU>
Subject: Apert Syndrome for the novice.
MIME-Version: 1.0
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Hi, My name is Nicki, my hubby and I are looking at adopting a little
girl
with Apert syndrome. I would like to read all of your posts for a while,
so
we can get an idea what we are in for.
I am having some trouble with all the medical mubo jumbo, on some of
the
medical sites, could someone give me a basic run down of the syndrome,
and
the "common problems" that go along with it.
I do have some experience with medically challenged kids and presently
have
a little girl living with us that has another rare Genetic syndrome.
thanks for your help, isn't the WWW great!!!
Nicki, Australia.
=========================================================================
Date: Tue, 9 Mar 1999
14:27:23 -0600
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From: Carbide Tech
<ruth@CARBIDETECH.COM>
Subject: Re: Discovery Channel Show
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Sheila,
Hi, this is Ruth Contreras (Kris' Mom) please, please, pretty
please,
would you mail us a copy of the program?
Ruth V. Contreras 1422 N. Park Ridge, Deer Park, Tx. 77536
Muchas Gracias Mi amiga!!!!
----------
> From: Sheila MacDonald <SMacdo1030@AOL.COM>
> To: APERT@LISTSERV.AOL.COM
> Subject: Re: Discovery Channel Show
> Date: Tuesday, March 02, 1999 9:43 PM
>
> Hello Deb,
>
> My name is Sheila and I have taped the show on the Discovery Channel.
I
have
> been getting alot of request to send out the tapes. I would
be happy to
send
> a copy your way just give me your mailing address.
>
> Sheila
=========================================================================
Date: Tue, 9 Mar 1999
14:44:47 -0800
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From: Christine Clark
<apertnet@IX.NETCOM.COM>
Organization: Apert Support & Information Network
Subject: Re: Questions
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
Mechelle,
I'm just now trying to catch up on e-mails so I'm sorry if this is too
late.
There are some children with Apert that do experience seizures for one
reason or another but the first thing to look for is possible
hydrocephalus. When was the last MRI to check the ventricles?
Hope all goes well.
Christine
=========================================================================
Date: Tue, 9 Mar 1999
19:43:47 EST
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From: Cristy Williams
<CARLEE0604@AOL.COM>
Subject: Re: Shawn's Mid-Face
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Glad to hear Shawn did fine with his mid-face surgery. Hope recovery
will be a
speedy one.
Cristy and Carlee
=========================================================================
Date: Tue, 9 Mar 1999
22:05:06 EST
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From: KTGrace1@AOL.COM
Subject: Fwd: it has been a long time
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From: KTGrace1@aol.com
Return-path: <KTGrace1@aol.com>
To: rlthorn@earthlink.net
Subject: Re: it has been a long time
Date: Tue, 9 Mar 1999 22:03:04 EST
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Sorry it took so long to respond, I work a very changeable schedule
and don't
often have time thru the week.. Katey has had 2 surgeries on
her feet. The
first was to remove a second pair of bones in her big toe, she actually
had 2
in each big toe. They kept the top of one set and bottom of the other.
They
did separate the big toe alittle, but it curls alot to the outside.
there is
a fancy medical term for that but I'm just not up on all the
medical jargin.
On the second surgery, they only darted tops of her toes. Her
plastic sur.
says that she would need many grafts and they do not do well on the
feet. As
far as he could determine at the time it would not be advised.
We too are
concerned with her little feet and having them appear as average
as the next
foot but sometimes we have to settle for the fact that she just isn't
average,
but very special. My daughter has begun telling Katey about
her hands and
feet as since the baby came she has noticed that her toes aren't "stuck"
together and wondered why not. What a beautiful opportunity to
begin sharing
with her. My daughter, Jennifer has shown her pictures of her
as an infant
and shown her what her hands and feet were like when the angels gave
her to
them. We have explained that sometimes God gets so busy making
all those
babies that he just can't get all of the work done and so he gives
some very
special parents the job of helping him get all finished. At 3
1/2 this is
very easy for Katey to understand. As she grows older and can
understand more
it will be explained to her as she is able to grasp it on her
level NOT ours.
Sometimes we tend to forget we are the grown-ups and they are the children
and
their understanding at their level is what counts, not our need to
explain
everything. All will come in time. It is amazing just how
much she remembers
from one doctor visit to another and how gentle her surgeon is with
her. He
tells her how beautiful she is and her intelligence is just amazing.
It's
hard for we adults not to let our own insecurities become our childrens
insecurities when they are perfectly healthy, much less when their
health is
affected in some way or another. Take it a
day at a time. They will too.
Thanks for your inquiry.
you can write me directly at
anytime....slc121950@aol.com
Sherri Colbert
--part0_921035107_boundary--
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Date: Tue, 9 Mar 1999
22:12:26 EST
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From: KTGrace1@AOL.COM
Subject: Re: it has been a long time
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Hello to the Bradley's.
You must sit in the Amen corner at church.... thanks for the Amen to
my
letter.
Granny Sherri, (Katey's Granny)
Sherri Colbert slc121950@aol.com
=========================================================================
Date: Tue, 9 Mar 1999
22:45:51 EST
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From: Irmocat2@AOL.COM
Subject: Myrtle Beach Vacation
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Hi everyone!! I am resending this message out to those of you
who may have
missed it the first time around and to all the new friends who have
just
signed on with us. Judy Amerman has been bugging me to send this
out, so Judy
here it is :)
Here's the details of our upcoming summer plans, for those of you who
> may have missed it:
> >
> > Hi everyone, this is Cathie (Teeter's mom). I know I never
write to
> > the list, but I always read every letter that comes through.
Judy Amerman
> > (Nick's mom) keeps telling me to write, get involved, etc., but
I just
like
> > lurking. I'm not much on writing, but I can sure talk your
ear off on the
phone or
> > face to face. Well, I'm finally writing, because we (Amerman's
and
Sears')
> > are going back to Myrtle Beach again this summer and we would love
to have
each
> > and everyone of you to join us. We are going to be there
from June 9th -
> > 18th. We will be staying at the Crown Reef Resort, which I think
is the
best
> > hotel in Myrtle Beach. (I have been going to Myrtle Beach
since 1976 and
> > Don has been going since 1960.) There is sooo much to see
and do at the
> > beach. There are amusment parks, water parks, shopping, shopping
and more
shopping,
> > dinner theatres, miles of beach, fishing piers, and hundreds of
wonderful
> > restaurants from dressy to all you can eat seafood. Plus
if you like
golf, Myrtle
> > Beach has some of the best courses on the east coast. Can't
you tell I
LOVE
> > Myrtle Beach. The hotel has 20+ swimming pools, full kitchens,
and
wonderful
> > oceanfront views off the private balcony. The rates run $130-$155
per
night
> > plus tax. There are times that Don, Teeter and I never move
our truck
from
> > the parking lot all week. I cook in the room and sometimes
go to
> > the downstairs restaurant and get a $1.30 meal of 2 hotdogs, drink
and ice
> > cream. Teeter calls it her hotel. Please visit Crown Reef's
website at
> > www.crownreef.com to see more about it. Myrtle Beach also
has a web
> > site at www.myrtlebeachlive.com Myrtle Beach
has an airport within 2
miles
> > of the hotel. Please consider joining us this summer and
starting our own
> > "family reunion".
> > Much love to all and happy holidays,
>
> > Cathie
>
> Hi all, it feels good to write to the list again and I am doing this
> on my own, because Don is at work. I know a lot of you expressed
interest
> in the Myrtle Beach vacation, but mentioned that the hotel rates
were too
> high. You can go to the Myrtle Beach website www.myrtlebeachlive.com
or
call
> 1-800-356-3016 and request the Stay and Play in the Myrtle Beach
Area guide
> free. It is a 370 page guide to all the hotels, motels, condos,
etc. in the
> Myrtle Beach area. Maybe you can find a more reasonable hotel
rate
> from that book. Even if you don't stay at the Crown Reef, you
can always
come
> and bring the kids to the 20 something pools and go out on the beach
with
us.
> The hotels across the street from the ocean are more reasonable and
so are
> the ones further inland. I hope this information helps and
maybe we can
> get more of our family to come to the beach. Well got
to go, Teeter's
home
> with a headache and I just have to go and watch Jerry Springer (that's
what
> stay at home mom's are supposed to do :). I just love my job!!
> Love to all, Cathie (Teeter's mom)
=========================================================================
Date: Wed, 10 Mar 1999
00:58:29 -0500
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From: Timothy Holt
<tholt@WEBTV.NET>
Subject: Fwd: babies
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From: tholt@webtv.net (Timothy Holt)
Date: Wed, 10 Mar 1999 00:52:13 -0500 (EST)
To: LISTSERV@LISTSERV.AOL.COM
Subject: babies
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Hi! My name is Mechelle, our daughter Courtney has Apert. She
is 9 mo.
old. Her older sister is 5 and at the time of Courtney's birth,
she was
only 4 yrs old. We told Chelsea that God gave courtney a special
set of
hands to do what she needed to do, and God gave Chelsea her own special
set of hands to do what she needed to do in her life. This has
pacified
her for now. I love your story about the parents job! It
is so cute!
Chelsea also thought that her hands were stuck together like Courtney's
when she was born. She also thought someone had glued Courtney's
fingers together, so she could pick stuff up. Then she
later said it
wasn't fair for Courtney's hands to be the way that they were.
I once
again explained about God giving both of them special sets of hands!
Kids are so intelligent!
Love to all.......Mechelle
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=========================================================================
Date: Wed, 10 Mar 1999
12:29:58 EST
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From: Sheila MacDonald
<SMacdo1030@AOL.COM>
Subject: Re: Apert Syndrome for the novice.
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Congratulations Nikki,
It's nice to know that there are people out there that notice how special
children like ours are. Our children are one in a million, they
have a great
way about them that mekes you feel so luck just to have been a part
of their
lives. If there is anything question that I can answer for you
please do not
hesitate to write. My name is Sheila and I have a 4 year old
daughter with
aperts who name is Paige.
Best wishes,
Sheila
=========================================================================
Date: Wed, 10 Mar 1999
12:34:08 EST
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From: Sheila MacDonald
<SMacdo1030@AOL.COM>
Subject: Re: Discovery Channel Up date
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Hello everyone.....
I just wanted to let you know that you should be looking in you mail
boxes for
the tapes...If you have'nt gotten them yet.....As for Ruth, I
will try and
tape the program again soon, but, I just gave my son back his VCR and
I want
to wait a while before I take it away from him. Hope everyone
else enjoyeds
the progam.
Sheila
=========================================================================
Date: Wed, 10 Mar 1999
15:38:37 -0600
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From: "Allison's: GO
USA, Inc" <gousa@GOUSAINC.COM>
Subject: Mid-Face Question
In-Reply-To: <d7464eba.36e6ad10@aol.com>
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Hi All!
We starting turning Shawn's distraction device this morning.
To anyone who has been through the mid-face distraction procedure where
the
mid-face is moved out gradually over a two or three week period, with
your
experience, was there much pain involved, and did the pain lessen after
doing it for a few days, or is it pretty constant from now until when
we
quit expanding the device.
If I could also ask what pain medication was prescribed during the
distraction time.
Thank You,
Mike Allison
mike@gousainc.com
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Date: Thu, 11 Mar 1999
13:36:47 +1300
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From: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: Re: Mid-Face Question
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Hi Mike
Our NZ family reports there has been no pain and it has been an "easy" procedure. What they are now getting, however, is tension on the muscles (or is it tendons there) which means the screws are now turning against tension. If you can make sense of that. (my interpretation of what they said) apparently still not painful.
Good luck.
Ann
NZ
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Date: Wed, 10 Mar 1999
21:29:06 EST
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From: Sheila MacDonald
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Hi guys,
I was just wondering if anyone went into the Chat room on Sunday?
I got held
up at a family parties and never got to go in. If you plan on
going in again
let me know...I would love to join you.
Sheila
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Date: Wed, 10 Mar 1999
22:09:52 EST
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From: Gail Montes <Gailsvm@AOL.COM>
Subject: Re: Mid-Face Question
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Dear Mike,
I'm new to this list. My daughter, Rachel, is 4 and we are probably
going to
have midface distraction done within a year. May I ask you where
Shawn had
this procedure done? I know of someone else that had midface
distraction just
recently in Dallas, and is very pleased with the results. I can't
really
speak for them, but they told me that there really wasn't any pain.
Good luck with this distraction. How old is Shawn?
Take care. Gail (from Boston area)
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Date: Wed, 10 Mar 1999
21:31:11 -0600
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From: "Allison's: GO
USA, Inc" <gousa@GOUSAINC.COM>
Subject: Re: Mid-Face II
In-Reply-To: <4d206143.36e73400@aol.com>
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Dear Gail:
Shawn is 4 1/2 years old.
We had the procedure done in St. Louis, MO, with Dr. Marsh and his
craniofacial team.
Mike Allison
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Date: Wed, 10 Mar 1999
22:29:16 EST
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From: Lisa Guyette
<LAM1126@AOL.COM>
Subject: Re: Apert Syndrome for the novice.
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That someone would adopt an Apert child is so wonderful. I would
think as
overwhelming as it was to hear all of the surgeries and problems a
child that
I gave birth to would bring, that someone who has a choice would find
it
insane. But because you have a choice and can calmly sit down
and read it all
first, it probably will just seem like there is a child out there
who will be
loving and wonderful and needs support and love through medical procedures.
If all of the kids are like my Samantha which it sounds like they are,
then
you are in for a big treat. It's too bad that some one else didn't
get that
chance, but in turn that child will get someone who is up for the challenge
and rewards. Keep in mind I've only got four months experience
with all
this, but I wouldn't trade it for all the world, because then I wouldn't
have
my Samantha.
You sound like a wonderful person.
Love, Lisa Guyette
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Date: Wed, 10 Mar 1999
22:42:51 EST
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From: Gail Montes <Gailsvm@AOL.COM>
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Thanks for the quick reply! I guess this is the new technology!!!
It sounds
pretty good so far. I believe there is another person on this
list that had a
distractor put on by the same craniofacial team that you have.
I know it was
St. Louis!
I was just in Missouri a month ago. My uncle lives in Sedalia
(where the
state fairgrounds are)!
Nice talking with you. Hope all goes well.
Gail
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From: Shirley Tanner
<TANRANCH@AOL.COM>
Subject: Re: Mid-Face Question
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Dear Mike,
Sorry I can't help you with your questions
but I am very interested to
know what you have been through. Our son Collin is scheduled for the
RED
system June 2nd in Dallas with Dr Fearon. Who is Shawns doctor? Is
the
distraction device on the outside attached to the head? I know there
are two
types of distraction-an internal and an external. But that is
about all I
know. I am trying to find out as much as I can about this surgery before
hand.
If you don't mind my asking, how long was the surgery? Was there
much
swelling? How long was Shawn in ICU? Did he have a breathing
tube & feeding
tube in ICU? Do they have to keep the child sedated pretty much
during that
period? I am a bit anxious & have lots of questions. I will hold
it to these
for now. Thanks for you help and I hope Shawn is doing well.
Anxious in Hartford, AL
Shirley Tanner
ps. How old is Shawn?
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Date: Thu, 11 Mar 1999
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From: "Allison's: GO
USA, Inc" <gousa@GOUSAINC.COM>
Subject: Response Shirley
In-Reply-To: <766331c7.36e7404b@aol.com>
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Hi Shirley,
Shawn is 4 1/2 years old.
Shawn's Dr. is Dr. Jeffrey Marsh in St. Louis.
Shawn has the internal device. The surgery lasted 5 to 6 hours.
There was
some swelling, but Shawn usually does pretty good on swelling.
His eyes
never completely swelled shut as predicted.
Shawn did not go to ICU, but to the floor after his surgery. He
had a low
nurse to patient ratio however.
No breathing or feeding tube on the floor after recovery. He was
on an
oxygen mask for a day. He did have the I.V. left in until we
left on
Sunday. (His surgery was on Thursday)
We had Shawn on Morphine for a day, then backed off to something a little
less strong.
Some kids have reported no pain during expansion of the device, others
have
some. I guess it depends on exactly what they need to move, and
in what
direction.
I hope Collin is doing well.
Cheers,
Mike Allison
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Date: Thu, 11 Mar 1999
20:58:23 EST
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From: Cristy Williams
<CARLEE0604@AOL.COM>
Subject: Re: AOL CHATROOM
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Sheila,
There were 4 of us in the chatroom on Sunday. Lisa Guyette suggested
doing it
again this Sunday at 6pm Central Time and 9pm Eastern Time. I
hope to be
there. Hope you can make it as well.
Cristy and Carlee
in Florida
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Date: Thu, 11 Mar 1999
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From: Shirley Tanner
<TANRANCH@AOL.COM>
Subject: Re: Midface Surgery
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Dear Mike,
Thanks for the info. You guys must be using the same doctor that Dori
Jefferson used with Seth. Sounds like the same device. There is such
a big
difference in the two types of surgery. I have no idea why one doctor
uses one
technique over the other. I just know that ours does the external so
that is
what Collin will be having. I trust Dr Fearon completely. He has been
Collins
doctor since he was 4 months old. Actually he assisted Dr Munro with
the
cranial surgery & then did the releases of his fingers & toes
on his own. He
is a wonderful & compassionate surgeon-very talented.
Why did Shawn have to have this midface done so early? I have
always heard
between 6-7 yrs old. I hope is doing well. Collin is great!
Best Wishes,
Shirley Tanner
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Date: Thu, 11 Mar 1999
21:19:08 EST
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From: Shirley Tanner
<TANRANCH@AOL.COM>
Subject: Re: AOL CHATROOM
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Christy,
Please tell me how to get to the Chat room for Aperts. I would love
to join
the conversation Sunday if I am home. Thanks.
Shirley Tanner in
Hartford, Alabama (LA)
(Mom of Collin)
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Date: Thu, 11 Mar 1999
21:25:30 EST
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From: Cristy Williams
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Shirley,
To get to the chatroom you
- Go to people connection on the main menu
- Then go to chatroom
-Then go to private member chat
- Type in Apert
That's the directions Lisa gave and it worked. Well I hope to talk with
you
Sunday.
Take Care,
Cristy
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Date: Thu, 11 Mar 1999
23:57:40 -0600
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From: "Allison's: GO
USA, Inc" <gousa@GOUSAINC.COM>
Subject: Shirley response
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Hi Shirley:
>Why did Shawn have to have this midface done so early? I have
always heard
>between 6-7 yrs old.
1. It is a safe surgery at this age.
2. With growth can come difficulty with breathing.
3. This gets this major surgery out of the way before Shawn is attending
regular school.
4. This is the age our Dr. suggested having this surgery.
If you have good Dr's, and they use different timing, I am not trying
to
suggest they are doing something bad. This is just the time schedule
we
are on, and the reasons we used to make the decision.
It also seemed like Shawn was starting to have difficulty breathing
at
night, like he did before he got his tonsils and adenoids out.
Cheers,
Mike
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Date: Fri, 12 Mar 1999
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From: Edelman Member
<CoH1862@AOL.COM>
Subject: Re: AOL CHATROOM
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My computer crashed last nite and I can't get Teeter's Page back. Can
someone
help please?
Thanks,
Diane Youngblood
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Date: Fri, 12 Mar 1999
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From: GSieb91515@AOL.COM
Subject: Re: Shawn's Mid-Face
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Glad to hear that Shawn is doing well. Maybe everyone can get
some much
deserved rest now. Let us know how it goes.
Brenda
Houston
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Date: Fri, 12 Mar 1999
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From: Judy Amerman
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Here's the link Diane
http://www.apert.org
----------
> From: Edelman Member <CoH1862@AOL.COM>
> To: APERT@LISTSERV.AOL.COM
> Subject: Re: AOL CHATROOM
> Date: Friday, March 12, 1999 4:51 PM
>
> My computer crashed last nite and I can't get Teeter's Page back.
Can
someone
> help please?
> Thanks,
> Diane Youngblood
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Date: Fri, 12 Mar 1999
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From: Nodrmat26@AOL.COM
Subject: Re: Mid-Face Question
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Mike~
Zoey's Mom here...just checking my mail after a whole week (104 message!),
so
this might be too late, but Zoey had surgery where they put in "pins"
that
need to be turned twice a day for two weeks. She hates anyone
touching her
hair, so I think the screaming and kicking and fighting is because
of that,
but after a few days of turning her pins, she finally just laid there
a looked
at my impatiently. I don't think she was in any pain at all.
They sent her
home with Tylenol with codeine, and we usually gave her some right
before we
turned her pins, just in case, but stopped that after the 1st week,
because it
seemed not to bother her. Hope this helps.
Christina - San Antonio
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Date: Fri, 12 Mar 1999
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From: Nodrmat26@AOL.COM
Subject: Re: Mid-Face Question
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In a message dated 3/10/99 10:09:38 PM Central Standard Time, TANRANCH@AOL.COM
writes:
<< how long was the surgery? Was there much
swelling? How long was Shawn in ICU? Did he have a breathing
tube & feeding
tube in ICU? Do they have to keep the child sedated pretty
much during that
period? >>
Shirley~
Zoey's Mom here. I read your questions and thought I could tell
you what my
Zoey has just been through, because it sounds about the same.
Zoey's surgery
took almost 8 hours, she spent 7 days in the hospital (ICU the whole
time -
she has a trach), she was only heavily sedated for the day of the surgery
and
maybe two days afterwards. It wasn't too bad, the worst part
for me was her
swollen eyes. I suggest bringing your child's favorite music
and books. Zoey
was content when I was playing the Barney Movie soundtrack and rocking
her.
Hope this helps!!
Christina
San Antonio
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Date: Fri, 12 Mar 1999
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From: Nodrmat26@AOL.COM
Subject: My Precious Zoey
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Hello all~
I just wanted to update everyone on how Zoey is doing. It's been
three weeks
since Zoey's surgery. She finally was able to see on the 7th
day after
surgery and she was so happy. To those who remember me being
afraid that Zoey
will end up not trusting me for bringing her to the hospital for all
her
"owies", I am happy to report that so far, so good. In fact,
Zoey prefers me
to anybody, she hasn't let too many people get close to her since the
surgery.
She is getting better everyday and I hope the mistrust of "everybody
except
Mommy" subsides.
Our "fun" with this distraction device started that weekend she came
home.
Since the day I brought her home, she wanted to be outside, so I took
her and
her sister to the zoo. When we got there, I noticed bright red
blood dripping
down her neck, and the ring around where the pin was was more saturated
by
blood. I used some gauze pads to clean it up and when I brought
her home and
picked her up out of her car seat, there was a saturated circle of
blood on
her carseat, bigger than a quarter. I wrapped her head up with
some leftover
"fixins" from when her hands were operated on, and waited until that
night,
when I couldn't stand it anymore, and took her to the hospital.
They patched
her little head up better than I could have done it and checked her
blood
count...which was fine. My poor, weak heart. THEN, it seemed
as if one of
her pins was becoming shorter and shorter, like her head was swallowing
up her
pin, so I called the surgeon and he said..."it's fine", and now, it
looks as
if a part of the device is trying to come through her skin right next
to her
right eye. I again called the surgeon and he said...you guessed
it..."it's
fine". If anyone can learn a lesson from all this: call
the Dr just to make
sure, but don't panic. I just can't wait until her pins are out
and we've got
this behind us. Gotta Run!
Christina
San Antonio
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Date: Sat, 13 Mar 1999
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From: Shannon Waldhauer
<losmar@BELLSOUTH.NET>
Subject: Re: Mid-Face Question
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Hi Allison
When my son Nickie went through his mid system he really
disliked having
anything touch his pins, I don't know if it was the fact that it caused
pain or
if he was just being overly cautious because he accidentally hit them
several
times ( boys being boys).
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Date: Sat, 13 Mar 1999
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From: cal <cal@PHOENIX.NET>
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What kind of problem do you need help with ?
Cal@phoenix.net
-----Original Message-----
From: Edelman Member [SMTP:CoH1862@AOL.COM]
Sent: Friday, March 12, 1999 4:52 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
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Date: Sat, 13 Mar 1999
00:58:13 -0600
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From: cal <cal@PHOENIX.NET>
Subject: Re: Mid-Face Question
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Our Sarah did not like anyone or anything to go near her pins .We think she was very uncomfortable with them. And very painful. Good luck.
-----Original Message-----
From: Shannon Waldhauer [SMTP:losmar@BELLSOUTH.NET]
Sent: Friday, March 12, 1999 7:41 PM
To: APERT@LISTSERV.AOL.COM
Subject: Re: Mid-Face Question
Hi Allison
When my son Nickie went through his mid system he really
disliked having
anything touch his pins, I don't know if it was the fact that it caused
pain or
if he was just being overly cautious because he accidentally hit them
several
times ( boys being boys).
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From: Michael Sharrow
<msharrow@CAMALOTT.COM>
Subject: Re: My Precious Zoey
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Christina,
Yes....a lesson was learned from your email. We
don't have the
distractor on yet, but looks like it'll be next month. But knowing
every
little thing that "could" happen DOES help. Thank you for sharing
it with
us.
Your friend,
Michael (Talitha's dad) in Abilene
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From: Yonstein@AOL.COM
Subject: Re: Shawn's Mid-Face/Zoey
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Glad to hear that Shawn and Zoey are doing so well.
Boy, it sounds very overwhelming to me. That's why I just take
things one day
at a time, step by step. First, we have a lot more surgeries
to finish the
hands. Then I guess we will start to research mid face.
Hope all is well with everyone.
Janine Krebs
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Judy,
Thank you so much>
diane
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Date: Sat, 13 Mar 1999
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From: Rich Thornquist
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Subject: Re: My Precious Zoey
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Hello to all!
I am not sure what we are doing as far as mid face advancement yet,
but I do
have one questions about this distraction thing. I saw it on
the Discovery
video (or something like it) and I was wondering.....how do the kids
sleep
with it. Being on both sides of the face and all. If they
are in school or
preschool when it is done, do you let them go to school, or keep them
home for
the time being?
Well, I guess that is two questions. Talk to you all later.
Lynn
=========================================================================
Date: Sat, 13 Mar 1999
18:50:45 -0500
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From: Jack and Raquel
<jara1@BELLSOUTH.NET>
Subject: Nicole's Surgery
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Hi everyone,
It's been a while since I've written in. Glad to hear that Zoey
is
doing well, it's going to be a few years before Nicole's mid face,
we
like Janine still have the hands to conquer first.
Well just want to give an update on Nicki she is now walking or lets
say
trying to run. It's incredible they just learn how to walk and
don't
give walking a chance because they take off running. Anyway we
are
really happy that she is now a walker. She started at 16 months
of age
she is now 17 months.
On Monday the 15th she is scheduled for surgery. The releasing
of her
middle and ring fingers on both hands. But of course she has
had a
runny nose for about two weeks now. The doctor put her on antibiotics
two weeks ago since her history of cancellations due to high white
count
he is treating her for sinus. Now it has not gone away and she
is still
on antibiotics because her hand surgeon that saw her last week extended
it for another 10 days up to surgery (because of her history) Now she
does not have a chest cold or any other symptoms just stuffy/runny
nose. She is salivating to no end. I have to change her
shirts four to
five times a day or try and get her to wear a bib (not too much luck)
I
don't know if all of this could be a symptom of teething (because she
has none yet) and this salivating started just about the same time
as
the runny nose.
Well any way again as always we have left her surgery in Gods hands,
if
it's meant to be it will be on Monday, if not the almighty will
re-schedule. Please keep Nicole in your prayers...
Have a great weekend....
Raquel Miller
=========================================================================
Date: Sat, 13 Mar 1999
22:23:57 -0500
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From: Rich Thornquist
<rlthorn@EARTHLINK.NET>
Subject: Re: Nicole's Surgery
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Raquel,
Just a thought......if you think Nikki is teething because of the drooling,
then maybe the runny nose is because of it as well.
Andrew used to drool a ton when he was getting teeth. We went
through
shirts like crazy as well. Bibs helped a little, but I went through
a ton
of those as well. Andrew also had a runny nose everytime a tooth
was coming
in. My feeling is, if the runny nose is clear, then I wouldn't
worry too
much about it. Andrew has gone into surgery with a runny nose
before. It
is the lungs they worry about. As long as those are clear and
no gurgling,
then you should be good to go.
Just a little food for thought.
Lynn
=========================================================================
Date: Sun, 14 Mar 1999
19:18:02 +1100
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From: Carol <carolh@HOTKEY.NET.AU>
Subject: Re: CHAT
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Hi Carol here from Australia. Would love to chat with you if time
allows on that night but how do I get there. Could someone please
let
me know.
Carol
=========================================================================
Date: Sun, 14 Mar 1999
23:08:01 +1300
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From: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: Re: Nicole's Surgery
Mime-Version: 1.0
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Hi Raquel
>nose. She is salivating to no end. I have to change her
shirts four to
>five times a day or try and get her to wear a bib (not too much luck)
A suggestion that might work - I tried to make Amy's bibs look like collars.
Regards
Ann
NZ
=========================================================================
Date: Sun, 14 Mar 1999
21:20:18 -0500
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From: tony zieth <zieth@HOTNET.COM.AU>
Subject: Re: CHAT
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Dear Carol,
I would also love to chat in the chat room, if you find out the time
difference, let me know will you, I live in Queensland, and we are
looking
at adopting a little baby with Apert.
Nicki, mum and fostermum to 3 great kids,Lachlan 4, jamie 3, (heart
healthy) and Katie 14 months, post fontan for tricuspid atresia, completion
due following Cath sometime after June 1999. Newly diagnosed CDLS,
Reflux,
peg fed, Nissen fundo op end of March.~~~~crawling at last~~~~~~watch
out
pussy cat!!!!!!!
=========================================================================
Date: Sun, 14 Mar 1999
12:02:23 EST
Reply-To: Information exchange and Internet
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From: Sheila MacDonald
<SMacdo1030@AOL.COM>
Subject: Re: CHAT
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Hi,
We will be meeting in the chat room at 6:00pm EST. It's easy
to get
there....first go to people connection, then press "chat now" , then
press
"private chat', and last type in "Apert".
How this works for you . Good luck and I hope to be talking with
you
tonight!!!
Sheila [Paige's mom]
=========================================================================
Date: Sun, 14 Mar 1999
12:14:01 -0600
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From: Michael Sharrow
<msharrow@CAMALOTT.COM>
Subject: Off to Dallas
Comments: To: Crouzon Discussion List <crouzon@u.washington.edu>
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Hi all...we're off to Dallas for Ear Reconstruction...keep Talitha in
your
prayers.....we'll be back Monday nite if all goes well. Thanks
everybody....your friend, Michael (Talitha's dad)
=========================================================================
Date: Sun, 14 Mar 1999
20:04:29 EST
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From: Shirley Tanner
<TANRANCH@AOL.COM>
Subject: Re: Mid-Face Question
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Dear Christina,
Thanks for the input. Yeah, it does help. 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? I remember with Collin's first cranial his eyes
swelled
shut for two days and were black & blue. But he seemed to heal
so quickly
then. I hope this time is the same.
Love,
Shirley
=========================================================================
Date: Sun, 14 Mar 1999
20:07:22 EST
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From: Shirley Tanner
<TANRANCH@AOL.COM>
Subject: Re: My Precious Zoey
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Hi Christina,
Read your update after sending that first message sooo..Hope she is
doing
well. How old is Zoey?
Shirley Tanner
Hartford, AL
=========================================================================
Date: Sun, 14 Mar 1999
19:24:34 -0600
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From: Randy & Deb
Picht <rldpicht@INFO.STARPOINT.NET>
Subject: Chatroom
MIME-Version: 1.0
Content-Type: multipart/alternative;
boundary="----=_NextPart_000_0014_01BE6E50.4AADDD60"
This is a multi-part message in MIME format.
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charset="iso-8859-1"
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This is Deb P from Minnesota. I downloaded ICQ last night but
cannot =
find People Connection on the Main Menu. I do not have that option.
Am I doing something wrong? Please help. Maybe I'm not in
the right =
place. I do not know.
Please let me know.
Thank you
------=_NextPart_000_0014_01BE6E50.4AADDD60
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 P from Minnesota.
=
I downloaded=20
ICQ last night but cannot find People Connection on the Main Menu.
=
I do=20
not have that option.</FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2></FONT> </DIV>
<DIV><FONT color=3D#000000 size=3D2>Am I doing something wrong?
=
Please=20
help. Maybe I'm not in the right place. I do not
=
know.</FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2></FONT> </DIV>
<DIV><FONT color=3D#000000 size=3D2>Please let me know.</FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2></FONT> </DIV>
<DIV><FONT color=3D#000000 size=3D2>Thank you</FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2></FONT> </DIV></BODY></HTML>
------=_NextPart_000_0014_01BE6E50.4AADDD60--
=========================================================================
Date: Sun, 14 Mar 1999
20:21:21 EST
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From: Shirley Tanner
<TANRANCH@AOL.COM>
Subject: Re: Prayers
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Just a note to say our prayers are with the little ones with upcoming
surgery,
Talitha & Nikkie & to the ones who are recovering..
Shirley Tanner
Hartford, AL
=========================================================================
Date: Sun, 14 Mar 1999
20:34:10 EST
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From: Cristy Williams
<CARLEE0604@AOL.COM>
Subject: Re: Nicole's Surgery
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Raquel,
Good luck on Nicole's upcoming surgery. I hope her cold is cleared up
by
surgery date. I know it is hard for surgeries to be delayed because
you are
ready to get them behind you. Carlee's cranial had been delayed due
to an
infected ingrown fingernail. Her hand Dr. had to remove it. Now we
are just
waiting for a date on her first cranial. I noticed you said Nicole
is 17 mos.
and no teeth yet. Well Carlee is 9 mos. and no teeth yet. I think someone
on
the list serv had said before that some of this kids are slow getting
their
teeth. I was told not to worry about it until Carlee was 12 mos.
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. I would appreciate
it.
Thanks,
Cristy and Carlee
in Florida