Hi Lynn,
Yes we do go to Childrens in Boston. There are a fair number of families
in
the Boston area whose children have Apert's besides you, me and the
Tolsens.
We host a summer gathering of craniofacial families at our house, usually
in
July. Hope you can come! Best, Jeanne
=========================================================================
Date: Fri, 22 Jan 1999
07:58:54 EST
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From: Mary Bresnahan
<Munch35738@AOL.COM>
Subject: Re: Reseach
Mime-Version: 1.0
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Hello, my name is Mary and I am doing research on Apert syndrome. I
am a
senior in college and I am looking for information on Apert.
I am looking for
genetic causes of the syndrome and others like it. If you have
any ideas
please share them with me. Thanks Mary.
=========================================================================
Date: Fri, 22 Jan 1999
11:07:54 -0500
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From: Don Sears <dsears@SCRS.STATE.SC.US>
Subject: Re: Lafort Procedure
Comments: To: "megan2@ix.netcom.com" <megan2@ix.netcom.com>
MIME-Version: 1.0
Content-Type: text/plain
There's quite a few. I'm posting your letter to the listserv with
instructions to reply directly to you.
You can always sign on to the listserv and set your options to receive
one daily digest rather than individual messages. Messages average
about 30-40/week.
Good luck!!!!
Don
> -----Original Message-----
> From: megan2@ix.netcom.com [SMTP:megan2@ix.netcom.com]
> Sent: Friday, January 22, 1999 10:18 AM
> To: catndon@apert.org
> Subject: Lafort Procedure
>
> Hello Im Megan, a phd student at Med. Coll. VA and have a twin sister
> underoging Lafort procedure for her cranio/maxo anomalies March 5
and
> I
> wanted to see if there is anyone on ur listerve list whose chld has
> had
> undergone this operation? This surgery wud be done at Childrens
> Hospital of Boston.
>
> Im familiar with Apoert Synd as its a genetic condition and kids
> (including your son, Teeter) are all adorable, no matter what
> differences they have. :) The main reason Mara, my sis. is
havinf the
>
> operation is that to impriove her speaking and breathing, she has
> hypoplastic maxilla
> high palate
> underdeveloped nostrils
> thick gum line
>
> The lafort is to reduce the gum line length by several milliliters
and
>
> to widen her nostrils. Yet she wud have cheek implants to make
her
> maxilla look fuller.
>
> Any suggestions of how to tolerate in the ICU and at home recovery
wud
>
> be helpful :)
>
> Im afraid to sign on the listserv list as I dont have time to read
all
>
> these nots (although I wud love to) so let me know if you feel I
can
> handle mail that much if its under 50 messeages weekly. :)
>
> Megan
=========================================================================
Date: Fri, 22 Jan 1999
11:43:59 +0000
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From: "J. G. Lindamood"
<chanan8@JUNO.COM>
Hello out there!
I've had an interesting week, thought I would share since I need your
help...
I tried to install a internet program on my computer (all I have now
is a
free e-mail only program). Well, being the computer idiot that
I am, I
botched something up and in my recovery process I blew up the free
e-mail
program. gggggrrrrrrr! So, I am starting from scratch.
my address is
the same. I have lost all of the personal addresses I had.
This is
where I need your help! Please e-mail me privately if you want
me to
have your address. I will print a hard copy of this list this
time!!!
Nothing like learning by trial and ERROR!
On top of it all I am home with a sinus infection and what might be
pink
eye! Oh the fun of it all!
hope you are well!
Joanne
=========================================================================
Date: Fri, 22 Jan 1999
20:40:09 -0800
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From: rreed <rreed@CABLEONE.NET>
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Hi everybody, just wanted to check and see how you all are?
Andrea what kind of surgery are you having?
Joanne so sorry you're not feeling good, I know how you feel
about your
computer, awhile back we had some problems with ours, all because I
wanted
to try another enternet sever and the one we had all ready didn't like
that.
These computers are to much for me, I like working on them, but I hate
all
the other problems that come with them. hope this note finds you feeling
better.
To Mary who's
doing research on Aperts my name is Maxine Reed and
Im 44 years old. Before I was born my mom was working as a x-ray tech.
at a
dentest office and she was exsposed to some measles. But my mom still
not
sure if that caused my handicapped or if it just was an act of God.
Which I
think it was I hoped that help.
To Megan, There's really know way to
tolerate being in I.C.U then
having your family around you. Having family around to me is the best
recovery I ever got when I had my surgery. I think that you can handle
listserver mail. I don't think there's that much to read, and what
there is
you can always copy it and read it later there's always alot of helpful
infor.
Hi Beth How you doing? Any new
news out your way?
Are there any Aperts friends that are older than 44 out there
that would
like to be E-mail pals and I was looking on the Teeter web page. And
saw a
couple thats last name is Starr I would like to hear from you if I
can. If
you want to write to me privately my E-mail is rreed@cableone.net.
If anyone
wants to write to me privately they can too. I also wante to know if
any one
knows Phyllis Deem? Who lives back east Pittsburgh,Pa. I would like
to talk
to her too.
Hi to Christine Clark.
It was good to hear from you.Take care. And
hang in there with kemo and radition.
To Raquel Miller in sunny south Florida. Is it really sunny
there? If it
is I'll be coming soon. Just kidding.I said that I was from sunny Calif.
Well right now where Iam at. It's not sunny Calif. It's been raining
off and
on this last week. and it's driving me crazy. I can't wait tell summer.
Please don;t be afraid to ask me anything. That goes for Everybody
on the
list. I'll try and answer all your question the best I can. Well Take
care
to you all and hope all is well with you all? Happness always Maxine
or you
can call me Max for short.
=========================================================================
Date: Fri, 22 Jan 1999
20:44:04 -0800
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From: rreed <rreed@CABLEONE.NET>
Subject: Fw:
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-----Original Message-----
From: rreed <rreed@cableone.net>
To: Aperts <APERT@LISTSERV.AOL.COM>
Date: Friday, January 22, 1999 8:40 PM
>Hi everybody, just wanted to check and see how you all are?
> Andrea what kind of surgery are you having?
> Joanne so sorry you're not feeling good, I know how you feel about
your
>computer, awhile back we had some problems with ours, all because
I wanted
>to try another enternet sever and the one we had all ready didn't
like
that.
>These computers are to much for me, I like working on them, but I
hate all
>the other problems that come with them. hope this note finds you feeling
>better.
> To Mary who's
doing research on Aperts my name is Maxine Reed and
>Im 44 years old. Before I was born my mom was working as a x-ray tech.
at a
>dentest office and she was exsposed to some measles. But my mom still
not
>sure if that caused my handicapped or if it just was an act of God.
Which I
>think it was I hoped that help.
> To Megan, There's really know way to
tolerate being in I.C.U then
>having your family around you. Having family around to me is the best
>recovery I ever got when I had my surgery. I think that you can handle
>listserver mail. I don't think there's that much to read, and what
there is
>you can always copy it and read it later there's always alot of helpful
>infor.
> Hi Beth How you doing? Any new
news out your way?
> Are there any Aperts friends that are older than 44 out there
that would
>like to be E-mail pals and I was looking on the Teeter web page. And
saw a
>couple thats last name is Starr I would like to hear from you if I
can. If
>you want to write to me privately my E-mail is rreed@cableone.net.
If
anyone
>wants to write to me privately they can too. I also wante to know
if any
one
>knows Phyllis Deem? Who lives back east Pittsburgh,Pa. I would like
to talk
>to her too.
> Hi to Christine Clark.
It was good to hear from you.Take care. And
>hang in there with kemo and radition.
> To Raquel Miller in sunny south Florida. Is it really sunny
there? If it
>is I'll be coming soon. Just kidding.I said that I was from sunny
Calif.
>Well right now where Iam at. It's not sunny Calif. It's been raining
off
and
>on this last week. and it's driving me crazy. I can't wait tell summer.
>Please don;t be afraid to ask me anything. That goes for Everybody
on the
>list. I'll try and answer all your question the best I can. Well Take
care
>to you all and hope all is well with you all? Happness always Maxine
or you
>can call me Max for short.
>
>
>
>
=========================================================================
Date: Sat, 23 Jan 1999
12:39:39 -0600
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From: sbc <sbc@COMWARES.NET>
Subject: apert show
MIME-Version: 1.0
Content-Type: multipart/alternative;
boundary="----=_NextPart_000_0004_01BE46CD.71954300"
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charset="iso-8859-1"
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Hi everybody just wanted to let you all know that on Sunday January24,
=
their is going to be a show on our PBS station about a family from
=
minnesota who's son has Apert Syndrome the mother's name is Liz and
the =
little boys name is Jake. I talked to her on the phone last week
and i =
don't think she is on the listserv. It is on at 4:00 Central
time it's =
called Health Week I hope it is the same every where. So everybody
=
check your local PBS stations also called the Learning Station.
My =
E-Mail is working again.
God Bless
Stephanie &Carroline Tingley
217-269-3264
sbc@comwares.net
------=_NextPart_000_0004_01BE46CD.71954300
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 size=3D2>Hi everybody just wanted
to let you =
all know=20
that on Sunday January24, their is going to be a show on our PBS station
=
about a=20
family from minnesota who's son has Apert Syndrome the mother's name
is =
Liz and=20
the little boys name is Jake. I talked to her on the phone
last =
week and i=20
don't think she is on the listserv. It is on at 4:00 Central
time =
it's=20
called Health Week I hope it is the same every where. So
everybody =
check=20
your local PBS stations also called the Learning Station.
My =
E-Mail is=20
working again.</FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2></FONT> </DIV>
<DIV><FONT color=3D#000000 size=3D2>God Bless</FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2>Stephanie &Carroline
=
Tingley</FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2>217-269-3264</FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2><A=20
href=3D"mailto:sbc@comwares.net">sbc@comwares.net</A></FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2></FONT> </DIV></BODY></HTML>
------=_NextPart_000_0004_01BE46CD.71954300--
=========================================================================
Date: Sat, 23 Jan 1999
16:36:07 EST
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From: Yonstein@AOL.COM
Subject: Re: Picture of Maxine in APERT
NEWS
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Dear Max:
I just looked at the back issues of Apert News. You are a beautiful
woman
with a lovely family. Thank you so much for all of your insight
and
willingness to share it with us.
By the way, I am Janine Krebs. My daughter Emily is 18 months
old. She, too,
is a beautiful girl with a great dispostion. Her page is on Teeter's
Page if
you would like to meet us.
Best wishes,
Janine Krebs
(Rainy New York)
=========================================================================
Date: Sat, 23 Jan 1999
16:36:45 EST
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From: Yonstein@AOL.COM
Subject: Re: apert show
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Thanks for the info. I am going to go look it up right away.
Janine Krebs
=========================================================================
Date: Sat, 23 Jan 1999
14:36:50 -0800
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From: rreed <rreed@CABLEONE.NET>
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Hi Janine, Thank you,You have a beautiful baby girl too and a nice family.
If you want more info about me just let me know.
For all you people out Calif. way the Health news show
on P.B.S is on
today at 5:00, But Iam not sure if it has the Aperts program on it,
It maybe
next Saturday at 5:00 that it's on. Thanks for the infor Stephanie.
I also so want to apologize for
sending a blank page. I meant to save
it for later but it must of got sent by mistake. Sorry about that.
I hope everyone is
doing well? Take care.
Happiness Maxine, (in raining and soggy Modesto,
Calif.
=========================================================================
Date: Sat, 23 Jan 1999
16:52:08 -0600
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From: Ize <ize@MASTER.CEAT.OKSTATE.EDU>
Subject: PBS Apert Program
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Hello everybody. I hope everybody is doing well.
I just check the listing
on our PBS station here in Oklahoma, and found
out that they do not carry the Health Week program. I would like to
ask
anyone if you could tape the program for us and send it to us. I will
pay for the tape and the shipping&handling.
I found the address where
you can check the Health Week program on all
PBS stations the carry it. Here it is:
http://www.pbs.org/healthweek/carriage.htm
I hope it helps.
Thank you.
Carlos Ize, Felipe's father.
=========================================================================
Date: Sat, 23 Jan 1999
19:30:36 -0800
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From: claudia salazar
<pcbaas@HOME.COM>
Organization: @Home Network
Subject: Back Issues of Aperts
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Hi Everyone,
Just wondering how do you access back issues of Apert News? Let
me know
thanks!
Claudia
=========================================================================
Date: Sat, 24 Jan 2099
23:06:19 +1100
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From: Chris Wood <cwsjw@SMART.NET.AU>
Subject: Proposed surgery
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Hello, Sylvia here in Australia.
Our Apert daughter Emma, who is 5 years old, is due to have surgery
on =
February 2nd. She has sleep apnea and does not as yet walk =
independently and occasionally her legs go into spasm.
Emma had two MRI scans done of her head last year, some slight changes
=
were detected in the second one. The neurosurgeon believes that
Emma's =
problems with sleep apnea and the spasms could possibly be alleviated
=
with surgery. This surgery would involve making a larger space
at the =
back of her skull to take any pressure off the brain stem area.
Has anyone on the listserv heard of this sort of surgery for Apert
=
kids?? =20
Like any other parent I don't want to subject my child to major surgery
=
without being certain that it is the best path to take. I would
really =
appreciate hearing from someone about this.
=20
Thankyou in anticipation,
=20
Sylvia Wood
------=_NextPart_000_000F_022E6566.791F25A0
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><!DOCTYPE HTML PUBLIC "-//W3C//DTD W3
=
HTML//EN"><!DOCTYPE HTML PUBLIC "-//W3C//DTD W3 HTML//EN">
<META content=3D'"MSHTML 4.72.3110.7"' name=3DGENERATOR>
</HEAD>
<BODY bgColor=3D#ffffff>
<DIV><FONT color=3D#000000 size=3D2>Hello, Sylvia here in =
Australia.</FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2>Our Apert daughter Emma,
who is 5 =
years old, is=20
due to have surgery on February 2nd. She has sleep apnea
and does =
not as=20
yet walk independently and occasionally her legs go into =
spasm.</FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2>Emma had two MRI scans done
of her =
head last=20
year, some slight changes were detected in the second one.
The=20
neurosurgeon believes that Emma's problems with sleep apnea and the
=
spasms could=20
possibly be alleviated with surgery. This surgery would involve
=
making a=20
larger space at the back of her skull to take any pressure off the
brain =
stem=20
area.</FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2>Has anyone on the listserv
heard of =
this sort of=20
surgery for Apert kids?? </FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2>Like any other parent I don't
want =
to subject my=20
child to major surgery without being certain that it is the best path
to =
take. I would really appreciate hearing from someone about=20
this.</FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2></FONT> </DIV>
<DIV><FONT color=3D#000000 size=3D2>Thankyou in =
anticipation,</FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2></FONT> </DIV>
<DIV><FONT color=3D#000000 size=3D2>Sylvia =
Wood</FONT></DIV></BODY></HTML>
------=_NextPart_000_000F_022E6566.791F25A0--
=========================================================================
Date: Mon, 25 Jan 1999
10:40:23 -0500
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From: Andrea Gartner
<agartner@PEGANET.NET>
Subject: Education
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Hi Alice, and anyone else who will be going through this.
You mentioned that people tend to expect a lot less of Shirley, and
want to
hold her back. First of all, I know that is not uncommon with
Aperts
children. My parent's and I believe a few other parents, went
through the
same thing.
Personally, from my experiance, all I can say is you should listen to
yourself. Don't let the school or administration make the decision.
You
know Shirley better than they do! It really frustrates me when
I hear they
want to do that (which is why I may sound a little pushy)
I have been in mainstream classes throughout my education, and am now
in a
community college. I have never taken any special education
classes. I
was at the lowest mainstream level there was (each school has a different
name for it) Personally, that was the best thing. Once
I tried a class in
the level above, but it was a little too fast. I didn't have
any major
problems with the school load. I feel I managed it well.
Maybe just had
to work a little hard then others. The biggest problems were
dealing with
some rude students. I also took advantage of any extra services
that are
provided for people with disabilities, like tutoring, extra time on
tests,
whatever. Check out what's available.
Just thought I'd share my experiance. If you have any questions,
please
ask! :>)
Good Luck,
Andrea
=========================================================================
Date: Sun, 24 Jan 1999
21:31:18 -0800
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From: claudia salazar
<pcbaas@HOME.COM>
Organization: @Home Network
Subject: Ear Candles
MIME-Version: 1.0
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Hi Everyone,
Allie had a check up with her ENT and audiologist this past week and
I
asked her about the ear candles. Any thing to make our kids life
easier, I thought was worth asking about... The audiologist made this
statement...She thought it was okay if you do not have tubes, but if
you
have tubes to definitly avoid using the ear candles because the pressure
that is created may pull the tubes out of place. According to
her, they
work on the premise of creating a vacuum with the fire utilizing all
the
oxygen...she said it is much safer to have the wax removed in the office
because the pressure is controlled. Just thought I would pass
it along.
Claudia
Sunny San Diego
=========================================================================
Date: Sun, 24 Jan 1999
23:30:28 -0800
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From: rreed <rreed@CABLEONE.NET>
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Hi, Andrea, I whole hardly agree with you on the school issue. Alice
you
really should do what your heart feels and how you feel Shirley would
feel.
You certianly do know Shirley more then anyboby. My mom felt that I
would do
better in a special ed class and I did. It just depends on how you
feel
Shirley would do. Don't let the teachers decide for you, go by your
own
instincts. My parents did and so did Andrea's and look where we'er
at now.
Andrea, it sounds like you are
having the same kind of surgery that I
had when I was 21 ( which was ages ago.Ha Ha) Anyway I know how you
must be
feeling. I felt that same way. I felt very comfortable with the way
I looked
back then too and I was going through the same rude and ignorant
people
too. Sometimes I felt like saying you people are really ignoramus,
but I
didn't. I just looked at your picture on Teeter's page and it was like
looking at my twin sister. You look just like me when I was at that
age we
both looked great. Besides it's what the inside that counts and you
sound
like a great person. Anyway back to the surgery thing; After I had
the
surgery and when I saw myself in the mirror ( I waited a while after
the
swelling and bruises went away). I didn't think I looked any different
until
my little cousion came to visit me and said that I wasn't her cousion
Maxie
that I looked different and I also had other people time me how great
I
looked after I showed them my before and after pictures. I'll send
Don my
high school gradutation picture if I can find it or if I can't a picture
that was taken before (what I call my face lift). Then you can
compare it
with the picture that Don has of my daughter and I. If you still would
like
to talk to someone who's been there and done that or you just want
to talk
to someone who knows what your going through you can give me a call,
my
phone no. is (209) 524-2141 or you can E-mail me privately at:
rreed@cableone.net. I think there is a three hour time differents.
I think
your three hours ahead of me. If you call me call me in the evenings
Iam
trying to stay off the computer in the evenings so that family and
friends
can call us. They have been conplaining about trying to call me and
never
getting trough because Iam on the computer, so Iam trying to staying
off the
computer for my familys sake. That goes for anybody you would like
to talk
to me in person or E-mail me. I would be glad to help in anyway I can.
Well
I gota go. Here it is in the evening and Iam on the computer.But I
felt I
needed to get this out before I forgot what I wanted to say. Take Care
all.
We'er all well for now. But it's so cold and raining here. Where's
the sun?
I guess it's in San Diego my favorite place. I really like The Pacific
beach
area the best.Happiness to all. Max (Maxine) Oh I forgot to tell you
Andrea
Iam really glad that I had that surgery, I really feel great about
myself
and it made me feel better how I looked through others eyes. Oh there's
still the stares and the comments but at least I know how I like myself.
=========================================================================
Date: Sun, 25 Jan 2099
23:09:43 +1100
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From: Chris Wood <cwsjw@SMART.NET.AU>
Subject: Re: PROPOSED SURGERY
MIME-Version: 1.0
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Thankyou to Mike and Shirley for replying so promptly. I spoke
to the =
neurosurgery registrar today, he said that Emma's sleep apnea will
=
probably not be altered by this surgery but the function in her legs
=
should be improved. Emma had a forehead advancement at 6 months
and the =
mid face advancement is planned when she is about 10 or 12 years old.
The surgery on Feb. 2nd involves removing a bone (the posterior
fossar =
-I'm not sure if this is the correct spelling)from the base of her
skull =
to allow more room for the brain stem and also allow the
fluid from =
her brain to flow easily down her spine.
=20
Sylvia
------=_NextPart_000_002C_022E6630.1CFDBB40
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http-equiv=3DContent-Type><!DOCTYPE HTML PUBLIC "-//W3C//DTD W3
=
HTML//EN">
<META content=3D'"MSHTML 4.72.3110.7"' name=3DGENERATOR>
</HEAD>
<BODY bgColor=3D#ffffff>
<DIV> </DIV>
<DIV><FONT color=3D#000000 size=3D2>Thankyou to Mike and Shirley
for =
replying so=20
promptly. I spoke to the neurosurgery registrar today, he
said =
that Emma's=20
sleep apnea will probably not be altered by this surgery but the =
function in her=20
legs should be improved. Emma had a forehead advancement
at 6 =
months and=20
the mid face advancement is planned when she is about 10 or 12 years=20
old.</FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2>The surgery on Feb. 2nd
=
involves removing=20
a bone (the posterior fossar -I'm not sure if this is the correct =
spelling)from=20
the base of her skull to allow more room for the brain stem
=
and also=20
allow the fluid from her brain to flow easily down her =
spine.</FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2></FONT> </DIV>
<DIV><FONT color=3D#000000 size=3D2>Sylvia</FONT></DIV></BODY></HTML>
------=_NextPart_000_002C_022E6630.1CFDBB40--
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Date: Sun, 25 Jan 2099
22:58:05 +1100
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From: Chris Wood <cwsjw@SMART.NET.AU>
Subject: Re: PROPOSED SURGERY
MIME-Version: 1.0
Content-Type: multipart/alternative;
boundary="----=_NextPart_000_0019_022E662E.7D1E1BC0"
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charset="iso-8859-1"
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Thankyou to Mike and for replying so promptly.
I spoke to the =
neurosurgery registrar today, he said that Emma's sleep apnea will
=
probably not be altered by this surgery but the function in her legs
=
should be improved. Emma had a forehead advancement at 6 months
and the =
mid face advancement is planned when she is about 10 or 12 years old.
This surgery involves removing a bone (the posterior fossar -I'm not
=
sure if this is the correct spelling)from the base of her skull to
allow =
more room for the brain stem and also allow the fluid from
her brain =
to flow easily down her spine.
Sylvia
------=_NextPart_000_0019_022E662E.7D1E1BC0
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 size=3D2>Thankyou to Mike =
and for=20
replying so promptly. I spoke to the neurosurgery registrar
today, =
he said=20
that Emma's sleep apnea will probably not be altered by this surgery
but =
the=20
function in her legs should be improved. Emma had a forehead
=
advancement=20
at 6 months and the mid face advancement is planned when she is about
10 =
or 12=20
years old.</FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2>This surgery involves removing
a =
bone (the=20
posterior fossar -I'm not sure if this is the correct spelling)from
the =
base of=20
her skull to allow more room for the brain stem and
also =
allow the=20
fluid from her brain to flow easily down her spine.</FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2></FONT> </DIV>
<DIV><FONT color=3D#000000 size=3D2>Sylvia</FONT></DIV></BODY></HTML>
------=_NextPart_000_0019_022E662E.7D1E1BC0--
=========================================================================
Date: Mon, 25 Jan 1999
09:43:55 -0500
Reply-To: Information exchange and Internet
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From: Don Sears <dsears@SCRS.STATE.SC.US>
Subject: Re: apert show
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
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This is Jake Niemi. The family is not on the listserv (no email)
but
you can see jake at http://www.apert.org/niemi.
> -----Original Message-----
> From: sbc [SMTP:sbc@COMWARES.NET]
> Sent: Saturday, January 23, 1999 1:40 PM
> To: APERT@LISTSERV.AOL.COM
> Subject: apert show
>
> Hi everybody just wanted to let you all know that on Sunday January24,
> their is going to be a show on our PBS station about a family from
> minnesota who's son has Apert Syndrome the mother's name is Liz and
> the little boys name is Jake. I talked to her on the phone
last week
> and i don't think she is on the listserv. It is on at 4:00
Central
> time it's called Health Week I hope it is the same every where.
So
> everybody check your local PBS stations also called the Learning
> Station. My E-Mail is working again.
>
> God Bless
> Stephanie &Carroline Tingley
> 217-269-3264
> sbc@comwares.net <mailto:sbc@comwares.net>
>
=========================================================================
Date: Mon, 25 Jan 1999
10:44:50 EST
Reply-To: Information exchange and Internet
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From: Mary Bresnahan
<Munch35738@AOL.COM>
Subject: Re: Education
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Yes, reference to education I know how it feels from the child stand
point. I
was born with a cleft palate, and my parents went through the same
problem.
My advice is to stand your ground and don't let the school system tell
you
anything different. This can be hard for you and the child, but
I found that
my parents decision was the right one and I progressed through school
and made
the honor roll all the way through high school. I find that I
am a better
person and can deal with the main stream society better. Just
remind the
child that other children may be cruel, but just ignore them they do
not know
any better. What other children don't know scares them and that
how they deal
with unknown. If you have any question please e-mail at Munch35738@aol.com.
Mary
=========================================================================
Date: Mon, 25 Jan 1999
12:33:55 -0500
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From: Ryan Bradley
<Bradleys_r@COMPUSERVE.COM>
Subject: Various
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Hi Brenda:
Thanks you for the birthday wishes for Michelle. She is a beautifull
8 year
old, she is doing great and no surgeries plan for a while.
We just got back from Mexico, my Dad lives in Oaxaca so we went
to visit
before baby number 2 arrives at the end of May.
We are trying to catch up with our E-Mail.
Welcome Maxine & Mark, good to hear Zoey is home, and due to our
baby being
too little we will not make it to Myrtle Beach this year.
God Bless Everyone on the Listserv.
Ryan & Martha Bradley
Algonquin, IL
=========================================================================
Date: Mon, 25 Jan 1999
11:55:33 -0800
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From: christina stile
<cmstile@YAHOO.COM>
Subject: greetings
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
hello all. my name is christina stile and i recently joined the
apert
listserv. i am a graduate student at carnegie mellon univeristy
in
pittsburgh, PA in a professional writing program.
my experience with apert is not first-hand, or even second or third.
i have a cousin who has the syndrome and she is a joy to behold.
her
smile melts my heart.
i am currently in a medical communications program and would like to
create and design some informational materials about apert geared
toward parents of children with the condition. I'm hoping that
some
of you will share your experiences with me about how you were told
about apert, where you went to get more information, and what you
would have liked to know but couldn't find. as i learn more about
apert's characteristics, i will undoubtedly have questions and such
to
ask you, the experts. i would appreciate any help you'd care
to give
me.
thanks--christina
==
toodles.
christina stile
cmstile@yahoo.com
_________________________________________________________
DO YOU YAHOO!?
Get your free @yahoo.com address at http://mail.yahoo.com
=========================================================================
Date: Mon, 25 Jan 1999
14:26:51 -0600
Reply-To: Information exchange and Internet
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From: Judy Amerman
<jamerman@UTI.COM>
Subject: For Beth
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Hi gang,
I just received a phone call from my friend Beth Oppelt. I am
sure you are
remember her. She lives in Iowa and is 34 years old with aperts.
Beth visited my home this past summer and we got along just great.
While
beth was here this summer, she shared a secret with me. And now
is the
time to share it with you.
I am writing this letter on behalf of Beth becauses sometimes she has
a
hard time expressing herself on the keyboard.
At the end of March, Beth is going to have twins. At this
time, it
appears the babies are non-apert and healthy.
Mother is tired of carrying around the excess pounds and is anxious
for
their arrival.
Daddy Steve is excited too and has been very supportive and helpful
to
Beth, as well as her family.
Thank you Beth for trusting me to share your news.
Congratulations Beth and Steve and Good Luck.
Personally, I can hardly wait too!
Judy Amerman
=========================================================================
Date: Mon, 25 Jan 1999
12:34:54 -0800
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From: Apert Mail <apertmail@USWEST.NET>
Subject: Re: June Vacation
MIME-Version: 1.0
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Hi everyone~
We Jennerjohns also were talking about going, and then Boom my husband
found out
work needs him to go to Korea for 6 months, he leaves the 3rd week
in Feb.
so I guess we will have to try and go next time something is planned.
hope we get to see pictures though =)
Dawn
=========================================================================
Date: Mon, 25 Jan 1999
12:48:57 -0800
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From: "Christine L.
Clark" <apertnet@IX.NETCOM.COM>
Organization: APERT SUPPORT & INFORMATION NETWORK
Subject: Re: Back Issues of Aperts
MIME-Version: 1.0
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> Just wondering how do you access back issues of Apert News?
Let me know
> thanks!
> Claudia
Send your request with a
check for $10.00 to cover costs made out
to:
Apert Support & Information Network.
Send it to:
P. O. Box 1184, Fair Oaks, CA 95628
If you would like to be added to the mailing list and/or networking
list
just let me know all of your information. There is NO cost to
receive
the newsleter, but I do ask for a donation, if you can afford it.
I
don't want anyone to miss out because of finances.
This is now a NONPROFIT organization so your donations are TAX DEDUCTIBLE
to help keep the organization (and newsletters, etc.) going.
I have
about 300 on my mailing list now!
I will send the back issues when I get energy spurts, hah!
Christine Clark
Director
=========================================================================
Date: Mon, 25 Jan 1999
13:03:14 -0800
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From: "Christine L.
Clark" <apertnet@IX.NETCOM.COM>
Organization: APERT SUPPORT & INFORMATION NETWORK
Subject: Re: Proposed surgery
MIME-Version: 1.0
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Sylvia,
This is a new one. Haven't heard of this procedure yet.
What kind of treatment is she receiving for sleep apnea now or in the
past? Was it Bi-PAP, CPAP or oxygen? Did any of them relieve
any of the
problems?
Did her MRI's show any enlargement in the ventricles that could suggest
hydrocephalus?
Has she been evaluated or received services in OT? Could her walking
trouble be attributed to "failure to thrive" from hydrocephalus, low
muscle tone or underdeveloped nervous system?
Just some thoughts.
Christine
=========================================================================
Date: Mon, 25 Jan 1999
17:18:53 EST
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From: BBarn60368@AOL.COM
Subject: Re: Education
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Thanks to Andrea, Max, and Mary for your advice regarding Shirley and
school.
I believe you are all right and I agree. It helps to get the
backing and
support though, because I can't help but get doubtful when going up
against
the "experts."
Alice
=========================================================================
Date: Mon, 25 Jan 1999
17:34:41 EST
Reply-To: Information exchange and Internet
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From: Liz Saylan <LSaylan@AOL.COM>
Subject: Re: Education
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hey there !
I just wanted to make a comment
about the school system. When I was ready to
start school they insisted i be put in a handicap class my mom tried
her best
to fight. But she lost. I dont regret being held back, but i don't
think a
child with apert's should have to go through what i did. I was not
only put in
a class with handicap children i was forced to be held back in order
to get
into a regular class when we moved away to another school district.
I think and believe society
needs to give us a break! Give a child a chance
to make it in a regular class and they might be amazed at how smart
we really
are. I hope I can be of some help. By the way for those who don't know
me my
name is Liz and I am 30 years old. I have apert's syndrome and unfortunately
have not been able to respond to alot of the emails, I have read them
all
though. I will do my best to catch up to date with all of you this
week. You
can see my pictures in the clubhouse and I believe u can read my story
back in
Octobers listserv archive I can't remember the date but it was after
October 8
I know that much.
Hope all is well with everyone,
look forward to getting to know the new
members. Again I am sorry for not keeping in better touch with all
of you
please forgive me!
Sincerly,
Liz Saylan
P.S. You can email me direct at LSAYLAN@AOL.COM
=========================================================================
Date: Mon, 25 Jan 1999
15:24:46 -0800
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From: rreed <rreed@CABLEONE.NET>
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Content-Transfer-Encoding: 7bit
Hi Beth, I just read your friends letter that she wrote. Congradulations
on
having TWINS! Thats so great! Iam so happy for you. I hope and pray
that all
goes well for you during delivery. I'll be thinking of you on the last
day
of March. Boy what a surprise. You sure do know how to keep secrets.
CONGRADULATIONS to you and Steve both. Take Care. Your friend with
lots and
lots of Happiness Max.Let us know what there are? Girls or Boys or
Both
And thanks to Judy Amerman for sharing your friend secret!
=========================================================================
Date: Mon, 26 Jan 2099
10:37:51 +1100
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From: Chris Wood <cwsjw@SMART.NET.AU>
Subject: REPLY TO CLAUDIA & CHRISTINE
MIME-Version: 1.0
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Claudia and Christine thankyou so much for all your information, =
thoughts and good wishes. Emma's surgery is not going to be as
long and =
as involved as Allie's, her op is supposed to take 2-3 hours and =
involves removing bone.=20
Emma has been on BIPAP for the past 6 months primarily because her
=
oxygen saturation levels were very low at night but also because her
=
attempts at walking seemed to regress last year. It was felt
that due =
to low oxygen levels she had little stamina and thus low muscle tone.
I =
suppose its a vicious circle. Over the past 6 months her speech
and =
understanding have improved but not her walking.
Emma does have a VP shunt since 9 months old.
She has seen an OT as well as a Physio. She wears AFO's - splints
to =
keep her feet and legs in the correct position. She prefers to
sit =
around or crawl most of the time. =20
Whether she has an underdeveloped nervous system, I can't say no one
has =
ever mentioned this possibility.
Thanks again it's great to talk these issues through.
Regards Sylvia
------=_NextPart_000_0049_022E6690.3E624F20
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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>
<META content=3D'"MSHTML 4.72.3110.7"' name=3DGENERATOR>
</HEAD>
<BODY bgColor=3D#ffffff>
<DIV><FONT color=3D#000000 size=3D2>Claudia and Christine thankyou
so =
much for all=20
your information, thoughts and good wishes. Emma's surgery
is not =
going to=20
be as long and as involved as Allie's, her op is supposed to take 2-3
=
hours and=20
involves removing bone. </FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2>Emma has been on BIPAP for
the past =
6 months=20
primarily because her oxygen saturation levels were very low at night
=
but also=20
because her attempts at walking seemed to regress last year.
It =
was felt=20
that due to low oxygen levels she had little stamina and thus low muscle
=
tone. I=20
suppose its a vicious circle. Over the past 6 months her
speech =
and=20
understanding have improved but not her walking.</FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2>Emma does have a VP shunt
since 9 =
months=20
old.</FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2>She has seen an OT as well
as a =
Physio. =20
She wears AFO's - splints to keep her feet and legs in the correct=20
position. She prefers to sit around or crawl most of the
=
time. =20
</FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2>Whether she has an underdeveloped
=
nervous=20
system, I can't say no one has ever mentioned this =
possibility.</FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2></FONT> </DIV>
<DIV><FONT color=3D#000000 size=3D2>Thanks again it's great to
talk =
these issues=20
through.</FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2></FONT> </DIV>
<DIV><FONT color=3D#000000 size=3D2>Regards =
Sylvia</FONT></DIV></BODY></HTML>
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=========================================================================
Date: Tue, 26 Jan 1999
08:54:17 -0500
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From: Andrea Gartner
<agartner@PEGANET.NET>
Subject: Re: Education
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I asked my mom about how I got mainstream.
I was evaluated by a psychologist who did various tests. The
results were
then sent to the superintendent of the school.
Just thought I share -
-Andrea
=========================================================================
Date: Tue, 26 Jan 1999
01:12:05 EST
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From: Lisa Guyette
<LAM1126@AOL.COM>
Subject: Hi Again
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I haven't writeen in weeks, but I have been reading the mail.
My daughter
Samantha was born 11 weeks ago with Aperts. The first month
was spent seeing
specialists and trying to deal with everything. The last
7 besides financial
organizations I've just been enjoying the arrival of my beautfiul daughter.
Basically I've been going on as planned. Pictures, stroller
rides, the Mall
trips etc. This is my first child so I don't really know if she's slower
than
most her age, but to me she's very smart. She has always
smiled and has made
a sound that sounds exactlly like "hi" that makes everyone say hi back.
She
has trouble getting her head up if on stomach, but is keeping it up
for a long
time if upright.
We had a MRI last month and her brain looks good. We get to wait
until next
month for another one to see if they should start sugery. I'm
trying to have
a normal mom/child relationship before we start the endless trips to
the
hospital.
I really enjoy having this board to hear what other parents are going
through.
I realized that the actual people with Aperts and similar Cranial facial
syndromes well teach me about what my daughter will need and want,
instead of
what will make me more comfortable.
I don't know if others have this problem. But Samantha fights
sleep all day
long, she'll cry if we put her down, and if she starts to fall asleep
she'll
jolt herself awake. Yet at 7 she will always go to sleep or lay
quietly. Is
this that Sleep Aphea? She fought the mediction at the
MRI too. They
couldn't knock her out for a long time and she woke right up after
the test.
This to me is ok she's a fighter.
I know she can see, but I'm not sure if she can hear normal and soft
sounds.
They are waiting on hearing tests.
I love my daughter so much in just a short period of time.
I don't
understand why or how this happened, but if it meant I wouldn't of
had Sam
then I wouldn't change a thing.
I'm getting so much better too about not falling apart. Everyweek
I would get
a form for Gerbers life insurance. All the baby mags had it too.
So I sent
it in. Tonight I got a personalized letter that said because
of her Aperts
Syndrome they could not except her. But I can try again when
she's five years
old. A month ago I would of fallen apart.
My husband and I have gone from last year complaining about how much
taxes our
country and state takes out, to now saying what a wonderful country
we live
in. Very strange. But a group called tri regional
Center is going to start
exercising her and give me mommy hours to get a way a few hours each
week.
We're being evaluated by childrens services, medical and social security
to
help us with bills and expenses.
I've learned in the last couple weeks that I'm my daughters avocate.
Someone
decribed it that it's similar to mom's with kids who are training for
olympics. Instead of taking her to gyms and meets I'll
be going to hospitals
and stuff. I was taught how to make a notebook to keep
all her stuff
organized. But I'm also making sure that I keep up
her baby scrapbook. I
have two journals going one written for her explain things, fun and
medical,
and one for myself to express things that I can't every where else.
Like the
medi-call woman who told me that I've got to be prepared that while
now I have
a lot of friend support, some well one day not want to be seen with
her.
Thank you all for your honesty and love. Your kids are very lucky.
And those
with Aperts your parents must of been wonderful you all are so inspiring.
Love, Lisa Guyette
Mother of Samantha Guyette born 11/11/98
Ventura area in California.
=========================================================================
Date: Tue, 26 Jan 1999
08:46:48 -0500
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From: Don Sears <dsears@SCRS.STATE.SC.US>
Subject: Re: For Beth
MIME-Version: 1.0
Content-Type: text/plain
Congratulations Beth!!!!!!!
> -----Original Message-----
> From: Judy Amerman [SMTP:jamerman@UTI.COM]
> Sent: Monday, January 25, 1999 3:27 PM
> To: APERT@LISTSERV.AOL.COM
> Subject: For Beth
>
>
=========================================================================
Date: Tue, 26 Jan 1999
09:01:04 -0500
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From: ROBIN L HILL
<CARMENRAE@PRODIGY.NET>
Subject: Re: Hi Again
MIME-Version: 1.0
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Hi Lisa! My name is Robin Hill. My daughter, Carmen Rae,
was born January
18, 1998 with Aperts. Your Samantha sounds SOOOOO much like my
little
Carmen Rae. Carmen also said what sounded like "Hi" when she
was younger.
We thought it was so cute. She also fought sleep during the day.
I
couldn't believe that she woke up at 8 am and didn't sleep again until
8
pm. However, I learned to be thankful that she slept through
the night (8
pm until 8 am) most of the time. I figured if she was going to
stay awake
for long periods of time at least it was when I was up. I will
tell you,
though, Carmen now sleeps through the night and takes a 2 hour nap
most
days. Hang in there; things will change. Carmen also had
trouble holding
her head up for long periods until her cranial surgery. Has Samantha
had
her cranial surgery yet? (Forgive me if you already gave this
info)
Anyway, I guess what I am trying to say is that what Samantha is doing
sounds very "normal" for a child with Apert Syndrome. Don't worry
too much
if she seems a little behind. Carmen Rae is doing so well now
and she went
through all the things you are describing. Carmen just turned
one and she
isn't crawling or walking. However, she gets around! She
scoots on her
bottom, she rolls, she sits up on her own, etc. I have finally
learned
(after a year) that our children will do what they need to do in their
own
time. Just try to enjoy your precious girl and accept that her
being
different is a blessing. I read something about parents with
handicapped
children being envied by others because they don't take anything for
granted. I believe this to be true. We used to joke about
being excited
when Carmen sneezed!!!! HAHA Take care.
Robin
----------
> From: Lisa Guyette <LAM1126@AOL.COM>
> To: APERT@LISTSERV.AOL.COM
> Subject: Hi Again
> Date: Tuesday, January 26, 1999 1:12 AM
>
> I haven't writeen in weeks, but I have been reading the mail.
My
daughter
> Samantha was born 11 weeks ago with Aperts. The first
month was spent
seeing
> specialists and trying to deal with everything. The last
7 besides
financial
> organizations I've just been enjoying the arrival of my beautfiul
daughter.
> Basically I've been going on as planned. Pictures, stroller
rides, the
Mall
> trips etc. This is my first child so I don't really know if she's
slower
than
> most her age, but to me she's very smart. She has always
smiled and has
made
> a sound that sounds exactlly like "hi" that makes everyone say hi
back.
She
> has trouble getting her head up if on stomach, but is keeping it
up for a
long
> time if upright.
>
> We had a MRI last month and her brain looks good. We get to
wait until
next
> month for another one to see if they should start sugery. I'm
trying to
have
> a normal mom/child relationship before we start the endless trips
to the
> hospital.
>
> I really enjoy having this board to hear what other parents are going
through.
> I realized that the actual people with Aperts and similar Cranial
facial
> syndromes well teach me about what my daughter will need and want,
instead of
> what will make me more comfortable.
>
> I don't know if others have this problem. But Samantha fights
sleep all
day
> long, she'll cry if we put her down, and if she starts to fall asleep
she'll
> jolt herself awake. Yet at 7 she will always go to sleep or
lay quietly.
Is
> this that Sleep Aphea? She fought the mediction at the
MRI too. They
> couldn't knock her out for a long time and she woke right up after
the
test.
> This to me is ok she's a fighter.
>
> I know she can see, but I'm not sure if she can hear normal and soft
sounds.
> They are waiting on hearing tests.
>
> I love my daughter so much in just a short period of time.
I don't
> understand why or how this happened, but if it meant I wouldn't of
had
Sam
> then I wouldn't change a thing.
>
> I'm getting so much better too about not falling apart. Everyweek
I
would get
> a form for Gerbers life insurance. All the baby mags had it
too. So I
sent
> it in. Tonight I got a personalized letter that said because
of her
Aperts
> Syndrome they could not except her. But I can try again when
she's five
years
> old. A month ago I would of fallen apart.
>
> My husband and I have gone from last year complaining about how much
taxes our
> country and state takes out, to now saying what a wonderful country
we
live
> in. Very strange. But a group called tri
regional Center is going to
start
> exercising her and give me mommy hours to get a way a few hours each
week.
> We're being evaluated by childrens services, medical and social security
to
> help us with bills and expenses.
>
> I've learned in the last couple weeks that I'm my daughters avocate.
Someone
> decribed it that it's similar to mom's with kids who are training
for
> olympics. Instead of taking her to gyms and meets I'll
be going to
hospitals
> and stuff. I was taught how to make a notebook to keep
all her stuff
> organized. But I'm also making sure that I keep
up her baby scrapbook.
I
> have two journals going one written for her explain things, fun and
medical,
> and one for myself to express things that I can't every where else.
Like the
> medi-call woman who told me that I've got to be prepared that while
now I
have
> a lot of friend support, some well one day not want to be seen with
her.
>
> Thank you all for your honesty and love. Your kids are very
lucky. And
those
> with Aperts your parents must of been wonderful you all are so inspiring.
>
> Love, Lisa Guyette
> Mother of Samantha Guyette born 11/11/98
> Ventura area in California.
=========================================================================
Date: Tue, 26 Jan 1999
10:39:26 -0600
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From: "Allison's :
GO USA, Inc" <gousa@KC.NET>
Subject: Re: Hi Again: Sleep Apnea
In-Reply-To: <261e0f02.36ad5cb5@aol.com>
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Hi Lisa Guyette:
The sleep apnea you hear about with children with Apert Syndrome usually
comes from obstructed airways. You might hear the term obstructive
sleep
apnea.
While my son Shawn was sleeping, he would quit breathing for periods
of 30+
seconds, then would have to practically wake up, to gasp for a breath,
then
after a few normal breaths it would happen again. This is not
a good
situation.
We found relief from this problem through removing his tonsils and
adenoids. (Age 1.5?) This is a common surgery to fix the problem
with
these children. Some Dr.'s not familiar with the syndrome sometimes
are
not as helpful or willing to give assistance in this area. As
you said,
you need to be her advocate.
After around 4+ years of age, this obstructive apnea can resurface due
to
changes in structures, which can increase the need for a mid face advancement.
Not medical advice, just my experience.
It was nice to hear about your relationship with your daughter!
You wrote:
>I don't know if others have this problem. But Samantha fights
sleep all day
>long, she'll cry if we put her down, and if she starts to fall asleep
she'll
>jolt herself awake. Yet at 7 she will always go to sleep or
lay quietly.
Is
>this that Sleep Aphea?
Mike Allison
mike@gousainc.com
=========================================================================
Date: Tue, 26 Jan 1999
12:30:58 -0500
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From: Rich Thornquist
<rlthorn@EARTHLINK.NET>
Subject: Re: Hi Again
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Lisa,
I'm glad to hear that everything is going well for you and Samantha.
It sounds
like you are definately taking this all in stride and that is what
you need to
do. If we didn't we would all end up in the insane asylum.
Everything and all
the information can get very overwhelming at times.
Just to let you know, I applied for Gerber Life Insurance as well.
They turned us
down too. I think their problem is, is that they do not know
about the Syndrome
itself. They just hear surgery and get scared. They did
not tell me that I could
try to apply in 5 years, but even if they did, I will never give them
a cent of
mine. I feel it is discrimination. Needless to say, no
more Gerber baby food in
this family. We are trying to get Andrew life insurance through
John Hancock in
Boston, MA. They seem pretty receptive. The reason I want
life insurance for
Andrew is because I want to make sure that he will never have a problem
when he is
older.
Well, that is my 2 cents.
Lynn
rlthorn@earthlink.net
=========================================================================
Date: Tue, 26 Jan 1999
13:30:31 -0800
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From: "Brent E. Young"
<beyoung@IX.NETCOM.COM>
Subject: Re: Hi Again
MIME-Version: 1.0
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Hi Lisa,
Wow! It seems like you're doing so well. I hope Samantha is doing well
too. I bet she is getting cuter and cuter every day. I have a new baby
brother who was born on 11/25/98 and I just love him like you love
Samantha. I hope you can send me a picture of her someday. I would
love
to have one for me album of my Aperts friends.
Kelly Spadini
=========================================================================
Date: Tue, 26 Jan 1999
20:44:44 EST
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From: Marilyn Williams
<Mbwill43@AOL.COM>
Subject: (no subject)
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hi all hope this finds all well to the new mom who's baby is only 11
wks old
I'm glad you found this site it is a GOD send and you can find out
so much see
ya later Marilyn{ Carlee's gam}
=========================================================================
Date: Tue, 26 Jan 1999
20:37:20 -0600
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From: Chad & Denise
Graham <cgraham@INFOAVE.NET>
Subject: DARYL'S SURGERY
MIME-version: 1.0
Content-type: text/plain; charset="us-ascii"
Hello everyone! Daryl had his forhead and orbital advancement
on Jan. 21.
He is doing great, but during the surgery his brain was nicked in 3
spots.
We or the surgeons didn't realize that Daryl's brain was really tight
in
there. His brain had rubbed against the brow bone and caused
it to become
very thin. His brain also or(the dura) grew into the 3 screws
so when they
removed the front it caused a disruption of the Dura. At this
point that
means nothing. We are on Dilantin for precautions for the next
year. This
is to keep him from having seizures if it did disrupt the brain.
At this
point, Daryl remembers everything and is back to his old self(except
for
being a little more cranky). We are happy with the results.
I hope
everyone is doing well and I will write again soon! Thanks to
all of you
for praying for us and remembering us on that Day. What a great
family we
all have together!!!
Denise Graham
=========================================================================
Date: Tue, 26 Jan 1999
22:02:14 EST
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From: Cristy Williams
<CARLEE0604@AOL.COM>
Subject: Re: DARYL'S SURGERY
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Hello Everyone.
Glad to hear Daryl's surgery went well. Carlee's mom here Cristy. She
has an
Appt. this Thursday to have a CT scan. We go back to her cranial surgeon
on
Feb 16th. They will schedule Carlee's first cranial surgery at that
time. Her
hands are still healing from Dec. 31st hand surgery to release
pinkys. We
also see the hand surgeon this Thursday. We could use all the encouragement
we
can get on head surgeries. Mechelle Holt and Stephanie Tingley have
been a
great help to me. Because their babies have already had a cranial surgery
done. This sugery will be to advance the forehead area and also I believe
the
eyebrow area. Will know more on feb. 16th. We will let everyone know.
I was
told today that we cannot stay at the hospital during the night or
nights
Carlee will be in ICU. Then she will go to a pediatric floor and we
may stay
at nights. We would appreciate any feedback on cranial surgeries. What
to
expect etc. Thanks for your help.
Sincerely,
Cristy, Clyde, and Carlee
in Florida
=========================================================================
Date: Tue, 26 Jan 1999
20:20:49 -0800
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From: rreed <rreed@CABLEONE.NET>
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Hi Cristy, Max here, I thought since I just read your letter that I
would
write you back about cranial surgerys, When I had mine I had a lot
of
bruiseing. I looked like two Mac trucks hit me but other than that
I had no
pain, but I was alot older than little Carlee (I was 21). The only
real pain
I had was around my rib cage right under my breast. They took a rib
bone
from my rib and put it around my cheeks to bring them out alittle.
The only
reason it hurt under there is my bra rub against the bandage, then
when they
took that off, it rubed against the scar. It still does sometimes.
But thats
usually when its been along day and Iam irritable. So then I just take
it
off.But I just want you to remember that was a long time ago(23 years)
and
things have changed but I do hope it helped.Take Care and we'll be
praying
for you all.
Iam also glad to hear that little Daryl's surgery
went so well. We'll
still keep him in our prayers and hope he makes a speedy recovery.
Take Care you all, Happiness always Max
=========================================================================
Date: Tue, 26 Jan 1999
22:05:31 -0800
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From: rreed <rreed@CABLEONE.NET>
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Hi Denise, Max here, I just read Kelly letter on listserv and didn't
realize
until I read her last name that is was little Kelly, and then when
I read
her birth date in the address book that Christine Clark sent to me,
I
realized that little Kelly isn't little no more She a TEENAGER oh boy
I am
getting old. It just doesn't seem that long since I last saw her. Boy
how
time flys by. So how is everybody?. I didn't know that you were on
the
listserv too. That's great. How you doing Kelly? Well gota go. I need
to get
some sleep. Take Care. Happiness Max
=========================================================================
Date: Tue, 26 Jan 1999
22:17:16 -0800
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From: rreed <rreed@CABLEONE.NET>
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Hi again Denise, Just wanted to say Congradulation on a new little boy.
That's great. Take care.Max
=========================================================================
Date: Tue, 26 Jan 1999
23:42:34 -0800
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From: Robyn Johnston
<robyn@ORDATA.COM>
Subject: Re: DARYL'S SURGERY
In-Reply-To: <v01550100b2d42ab3ed45@[204.116.102.50]>
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Hi Denise,
Glad to hear that Daryl's surgery was successful. Hopefully releiving
some
pressure will make him feel better. I can't even begin to imagine
the
difference. It must be incredible. I will keep you in our
prayers that
those little 'nicks' will be ok. It is good to be a little on
the cautious
side.
Robyn J
=========================================================================
Date: Wed, 27 Jan 1999
08:39:43 EST
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From: Jenngram@AOL.COM
Subject: Re: DARYL'S SURGERY
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I am so glad Daryl's surgery
went well......I havea quick question, for my
own future reference....Did Daryl's CT's show how tight things were
in there?
Just curious....Glad they got in when they did adn corrected wht could
hvae
been a really bad chronic headache!
Also, we were not allowed
to stay in ICU w/ Jordan during his cranial last
year either....which ended up being a good thing for us. Since we have
no
family here, I would have been exhausted, so for the 2 nights he was
in MICU,
they kicked me out and I got to go on home to get some much needed
rest....aside from calling the unit whenever I woke up in the night.
Good Luck....we too are heading in Monday for the final finger separation
on
the left hand...keep ya'lls fngers crossed (no pun intended) that we,
or
rather Jordan, get this final separation!!
Jenn(Tampa/St. Pete)
=========================================================================
Date: Wed, 27 Jan 1999
13:44:15 -0500
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From: Ryan Bradley
<Bradleys_r@COMPUSERVE.COM>
Subject: For Beth
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Congratulaions Beth & Steve!!
The Bradley's
Algonquin, IL
=========================================================================
Date: Wed, 27 Jan 1999
17:02:54 EST
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From: BBarn60368@AOL.COM
Subject: Re: DARYL'S SURGERY
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Cristy:
The main thing I remember with Shirley's cranial surgeries was the swelling.
Her little face swelled up so much it closed her eyes. Her little
eye lashes
looked like pins sticking out of a balloon. This was when she
was only 5 mos.
old and they were creating her soft spots, so I don't know if the advancement
will be the same.
Alice in Orlando, Fl.
=========================================================================
Date: Wed, 27 Jan 1999
20:16:11 +0000
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From: "J. G. Lindamood"
<chanan8@JUNO.COM>
Subject: one more time!
Hello!
I stopped by my local AAA office and picked up a tour book for Myrtle
Beach. My dreams of joining you in June have re-entered
the realistic
realm! There are less expensive hotels in the area. could
someone - one
more time - send the info about the trip. I want to get a hotel
within
walking range of you all.
Thanks!
Joanne
=========================================================================
Date: Mon, 25 Jan 1999
22:26:29 +0000
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From: "J. G. Lindamood"
<chanan8@JUNO.COM>
hello everyone!
Life sure is interesting here... never a dull moment!
I spent Wednesday night in the ER with a negative drug reaction to
sudafed. My co-workers and I thought I was having a heart attack.
Red
face, beating heart, numb arms and hands, sweaty etc... Thanks
God I
work at a hospital. Unfortunately, that does not give me speedy
treatment in the ER. I waited for two and a half hours before
I was
seen! Then the tests took forever to come back. I'm okay
now, on
antibiotics. I am scared to take anything for the sinus pressure
and
other symptoms though. Will consult a pharmacist tomorrow for
alternative suggestions.
I wanted to put my two cents in on schooling. I don't recollect
any
discussion on what class I would be in, special ed versus mainstream.
I
was main streamed from kindergarten on. There were rough times,
as I am
not your exceptional scholar. But I made it. I give a lot
of credit to
my second grade teacher for teaching me to write, not print.
She had the
patience of Job and we both celebrated when I finally got the hang
of it.
My mom was very active in our schooling, she was the president
of PTA
and was in our rooms for special occasions. So, I guess what
I'm getting
at is schooling is a team effort. The student being the star
player.
If it's any consolation, there are adults out there who want to "hold
me
back" from life. Most of these adults share holiday dinners with
me.
You (I) just have to prove them wrong.
Ok, off the soap box. Hope all is well where you are!
Joanne, it took 48 hours, for all the ice and snow that accumulated
in
TWO WEEKS to melt!
=========================================================================
Date: Wed, 27 Jan 1999
21:14:44 -0600
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From: Chad & Denise
Graham <cgraham@INFOAVE.NET>
Subject: CT scan
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Jenn,
No, the CT did not show how
tight the brain was. It does show if
the ventricles are enlarged, but there was no way to tell that the
front of
the brain was pushing on the brow bone. Good luck on Jordan's
final finger
release. I know all will go well.
Denise Graham
=========================================================================
Date: Wed, 27 Jan 1999
19:53:56 -0800
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From: "Brent E. Young"
<beyoung@IX.NETCOM.COM>
Subject: Various
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Hi Max,
Thank you for writing to me. You're right, it has been a long time since
we have seen each other. I think the last time was a couple years ago
at
Marine World. I am glad you joined the listserv. I have been on for
awhile and I really enjoy reading the messages.
I am doing really well. I am in 11th grade
now and having a good
year. I am in the Health Academy, which is a program that puts an
emphasis on the medical field. I AM really enjoying it and wish I
would've joined last year. I got straight A's for the first time this
year, too. I have a new baby brother, as you know, but to clear up
any
confusion, it was my step-mom, not my mom. It's not your fault
so don't
worry about it. I hope you and your family are doing well, too.
=========================================================================
Date: Wed, 27 Jan 1999
23:27:41 EST
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From: Lisa Guyette
<LAM1126@AOL.COM>
Subject: Hello
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Thanks to everyone who e-mailed me about Samantha.
I keep reading about past surgeries and future surgeries of your children
with
Aperts and I think how wonderfully brave you all are. I
hope I'm as strong
when Samantha starts her surgeries. I also could feel that
all of this must
bond you with your child and they with you so strongly.
I'll be praying for all of you and your upcoming surgeries.
Lisa Guyette
=========================================================================
Date: Wed, 27 Jan 1999
20:25:37 -0800
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From: "Brent E. Young"
<beyoung@IX.NETCOM.COM>
Subject: Hi Maxine from Denise
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Dear Max & Other Readers:
It was great seeing your 1st letter on the listserver. Isn't is
great?
Thanks Don Sears! I wish we would have had that available when
Kelly
was a baby and toddler. We didn't talk or meet another Apert's
family
until Kelly was 6 years old. We had the phone # of a family that
lived
about 3 hrs. away, but I was afraid to contact them. I was fearful
that
if their child was older, that maybe the things they had to tell me
would be negative and that if we met, that it might be a sad occasion.
I couldn't have been more mistaken. When we first met some other
families at the Nut Tree in Vacaville, it was an immediate bond and
such
a positive meeting. They were all familes just like ours, I left
there
with such a great feeling and so positive in my thoughts of Kelly's
future. AND then when we met you and Bob and your daughter Sarah
that
was the icing on the cake. You were such a positive, warm person.
And
I will never forget when you played the piano for us. I really
knew
then that everything would be fine for Kelly. And yes it is hard
to
believe that "little" Kelly is a teenager of 17. I feel so fortunate
with the school district we have been in. She has had a great
school
experience. I credit the Teachers, Other Parents and The Students.
And
I also think it was a positive thing that Kelly has remained in the
same
school district since Kindergarten. And of course I think a lot of
her
positive school experience has to do with her personality. She
has
always been confident in making friends and joining in and is a very
social person, so that has been easy for her.
Well I've been rambling. This is my 1st actual letter on the
listserve. Kelly's been doing all the corresponding, which is
great, I
think she really loves this. (What a positive thing for her!)
I look
over her shoulder now and then and read peoples entries when I have
time. It's great how the internet can be so positive and helpful
to all
the Apert's families.
Take care Max, say Hi to Bob and Sarah. You'll have to e-mail
me and
tell me about "little" Sarah who also is all grown up.
Bye to all, Denise (Kelly Spadini's Mom)
=========================================================================
Date: Thu, 28 Jan 1999
08:57:05 EST
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From: Jenngram@AOL.COM
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Joanne,
Be sure you are not mixing antibiotics with sudafed......espically anti-fungal
antibiotics...the combination can cause dangerous heart arrhythimias....
Also, most sinue meds can increase your BP.....they makes an over the
counter
med for people who have high BP or have reactions to cold meds....I
believe
its called Coracedin....ask the pharamacist they will know...
Glad your are better...reactions like that are too scarey to repeat!!!
Jenn(Tampa/St. Pete)
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Date: Thu, 28 Jan 1999
09:00:18 EST
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From: Jenngram@AOL.COM
Subject: Re: CT scan
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Ok, so there is no way to determine about the proper "fit" of the brain
inside
the skull, aside form opening them up...
Second question......had Daryl's soft spots/defects (whatever the Dr's
termn
of choice is) filled in form his first cranial surgery?
Just curious.....Good Luck on a continued speedy recovery
Jenn
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Date: Thu, 28 Jan 1999
09:41:38 -0500
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From: Rich Thornquist
<rlthorn@EARTHLINK.NET>
Subject: Re: DARYL'S SURGERY
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Cristy,
First, let me say how upset I am to hear that they will not let you
stay overnight
at ICU. I think that is definately horrible. If I were
you, I would insist on
staying by my child's bedside and tell them that they will have to
get security to
remove me. I believe there is a chair by most beds, and you should
have no
problem (it will be uncomfortable) sleeping there. At Children's
Hospital in
Boston, they have a special sleeping area for parents of children in
ICU as well
as chairs at each bedside if you feel you want to sleep there.
Is your hospital a
Children's Hospital? I think that makes a difference.
As far as what to expect, I can only tell you what it was like with
Andrew. He
was extremely swollen around his eyes and face. There was bruising
around both
eyes, one more than the other, but no real reason for that. The
bandage was like
a large turbin. It is difficult seeing your child lieing there
with a swollen
head and tubes coming out of everywhere. But in the long run,
it will be all
worth it. Andrew looks so much better these days, and I do not
have to worry
about his eyes because they now have some protection.
Good luck with the surgery and I will be thinking of you and praying
for
everything to turn out just fine (and I'm sure it will). Again,
I would be an
advocate and insist that you stay by your child.
Keep us posted.
Lynn Thornquist
rlthorn@earthlink.net
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Date: Thu, 28 Jan 1999
09:58:48 EST
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