Maxine,
Thank you for your answer. It was really nice to find that today,
especially
since I've been thinking about you a lot these past few days.
I looked at
your picture on Teeter's Page. Your beautiful face with that
of your
daughters and I think husband was so special. That is the
picture I want my
daughter to see. Along with the love you can see in all of your
faces, I
also can see a lot of sense of humor. I will be sending
you a picture
shortly of Samantha, I would really love one of you and your family
for her
book. I thought that you were born with Aperts to help people
like us days
before you wrote you say that to people. I believe that.
If my daughter
chooses to have kids she can see that there is a 50/50 chance that
they won't
have Aperts, and if they do will then they'll be as beautiful as you,
her and
the others on this listserv.
I also wanted to ask you if maybe you knew my cousin Roberta Lucero
who just
moved from Modesto. I know it's big now, but she lived there
for over 20
years. She worked in a beauty salon called Gary's and then I
think the
Meridian. Just curious.
Love, Lisa Guyette
P,S, All my toes are long and exactly the same size except my
little toe
which is really small`, so I never wear sandles and I always have a
pair of
socks on. I bet Samantha will be less neurotic than I was as
a teenager.
Love, Lisa Guyette
=========================================================================
Date: Wed, 7 Apr 1999
23:11:59 -0500
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From: "Niemi, Liz"
<Liz.Niemi@NMB.NORWEST.COM>
Subject: Re: Myrtle Beach
MIME-Version: 1.0
Content-Type: text/plain
Thanks Marilyn!! We appreciate it!!
Liz Niemi
-----Original Message-----
From: Marilyn
Williams [SMTP:Mbwill43@AOL.COM]
Sent: Wednesday,
April 07, 1999 9:25 PM
To:
APERT@LISTSERV.AOL.COM
Subject:
Re: Myrtle Beach
OUR FINGERS ARE CROSSED AND
OUR PRAYERS WILL BE SAID GO JAKEAND GOOD
LUCK.MARILYN
=========================================================================
Date: Wed, 7 Apr 1999
23:16:26 -0500
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From: "Niemi, Liz"
<Liz.Niemi@NMB.NORWEST.COM>
Subject: Re: Just a add note
MIME-Version: 1.0
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Max,
Just curious since I'm new to the Apert Family, when did you have your
facial surgery?? We're really contemplating on when (or if) Jake
should
have a mid-face advancement. He's having his first sleep study
this Friday,
and I guess we'll know more then. But I've been told so many
different
things. I know it's ultimately parents choice, but as always,
we want to do
what's in the best interest of Jake.
Thanks!
Liz Niemi
-----Original Message-----
From: rreed
[SMTP:rreed@CABLEONE.NET]
Sent: Wednesday,
April 07, 1999 10:03 PM
To:
APERT@LISTSERV.AOL.COM
Subject:
Just a add note
Hi it's me again Max, I forgot
to wish a belated Happy Birthday to
all the
April birthdays to Teeter,
Sarah, Andrew, and Collin. I hope they
were a
great day for all of you.
Also I wanted to mention to Amy, Liz and
Judy. I
had my tonsillectomy-Adenoidectomy
before my facial surgery and
didn't have
any problems when I had
my facial surgery. But then again I was
older (21)
that could make a differents.
I don't have any breathing problems
and I
didn't have any at the time
of my tonsillectomy it's just that my
mom felt I
was getting to many sore
throats and wanted to take them out. I just
wanted
to add my two cents, I hoped
it helped. Cristy, I really feel for
little
Carlee. I don't blame you
for stopping them sticking Carlee so many
times. I
have the same problems with
my vaines too. When ever I get blood
test I tell
them to get someone who
knows how to find vains real good and to use
the
butterfly needle because
my vains roll and hide. A butterfly needle
is
smaller and it takes longer
to get the blood but it isn't as pain
full going
in. You might want to ask
them about that.I hope I helped. Take Care
all.
You are all in my prayers.
=========================================================================
Date: Wed, 7 Apr 1999
23:32:05 -0500
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From: "Niemi, Liz"
<Liz.Niemi@NMB.NORWEST.COM>
Subject: Re: question
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
Kelly,
As far as I know, they're pretty much one in the same. The Leforte
III is
the actual name of the procedure - advancing the bones of the mid-face.
It
is named after the man who developed the procedure (the actual cutting
of
the bone and advancing them). There is also the new distraction
device
procedure in conjunction with the Leforte III, which is now being used
to
advance the bones of the mid-face at a slower rate. Apparently,
the
distraction device allows a slower advancement of the bones so there
is a
less likely chance of the bones fracturing during the procedure.
This
allows the procedure to be done on children at a younger age.
The youngest
I've heard allowed is 4-5 years of age.
I've corresponded with a Dr. Bryant Toth in San Francisco who is very
knowledgeable in advancing the bones of the mid-face with distraction.
He
indicated to me that they've measured approximately 22 pounds of force
put
on the mid-face during this procedure. The facial bones have
to be strong
enough to withhold that force, and he finds the earliest this can be
done
successfully is around the age of four.
If you would like his name and address for further correspondence, let
me
know. I also have several articles and papersfrom him about the
subject.
Let me know if there's anything else I can do for you.
Liz Niemi
-----Original Message-----
From: Brent
E. Young [SMTP:beyoung@IX.NETCOM.COM]
Sent: Wednesday,
April 07, 1999 7:29 PM
To:
APERT@LISTSERV.AOL.COM
Subject:
question
Hi everyone,
I had one question for all
of you. I went to my orthodontist today
and
he gave me some information
on the Leforte III. What is the
difference
between that and the midface
advancement?
Kelly
=========================================================================
Date: Wed, 7 Apr 1999
23:01:57 -0700
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From: rreed <rreed@CABLEONE.NET>
Subject: Hi Liz and Lisa
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
Content-Transfer-Encoding: 7bit
Hi all I thought I would write back while I can. Liz I had my
surgery when
I was 21 which was 23 years ago. Iam now 44 years old!! At the time
my mom
had read an artical about this french doctor who did facial surgery
on
disfigured patiences. He had trained a doctor in San Franisco to do
the same
surgery here in the states. He's name is Dr. Osterhoute. ( I think
that how
it's spelled.) Mom talked to me about it. Then with some long thoughts
and
alot of prayers and support from friends and family I had it done.
I haven't
regreated it since. I wouldn't know what to tell you. Alot of the parents
here have had the face surgerys on their children early which at first
I
thought was to young but as I thought about it, I agreed with them
in having
it done early because first for medical reasons and second so the child
doesn't have to go through the pain of being teased. There still are
some
mean people out there. What ever you decide. It will be the right choice.
Because parents knows what best for their children. I'll be praying
for you.
I know what you're going through because I went through it 23 years
ago.
Lisa thanks for the complement on our pictures as soon as I have some
new
family pictures made I'll send you one and everyone else on the picture
exchange. I love to have one of Samatha too. This group is so much
fun. Yes,
we do have a since of humor. Thats what keep us going, and sane in
this
insane world. No I didn't know your cousin Roberta Lucero. Was she
handicapped? Just curious, because I think I knew a girl in high school
with
that last name. Did she go to Beyer High School? Any time Lisa and
Liz or
anybody else for that matter have any questions just ask. I'll try
and
answer them. I'd love to help if I can. That's why the Lord put me
here I
think, to help you all. Well I gota close. Take care all. Max or Maxine
in
cold Modesto, Calif. Where's the sun?
=========================================================================
Date: Thu, 8 Apr 1999
04:31:25 -0500
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From: "MARK E. DUBAS"
<Murphy@PLATTEVALLEY.NET>
Subject: Re: Obstructive sleep apnea
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: quoted-printable
Hi Amy...
I've had sleep apnia all my life, just 10 years ago waking
up to the =
fact that something wasn't right, so I went in for the test. =
Unfortuneately, I don't remember what all was found out, only that
I had =
it, and something needed to be done very soon...either surgery...or
=
purchaseing a C.P.A.P (Controlled Positive Air Pressure) machine....I
=
opted to buy the CPAP..mainly because I didn't want the time or expense
=
of surgery.I was 25 years old when we discovered this. I sleep
with a =
mask over my nose..the machine sits beside my bed, and literally blows
=
air into my nose, forcing me to breathe. The main draw back of this..is
=
having a stuffy nose..then of course..it doesn't work...so..even tho
=
it's not wise of me to do so...I go without, and most of the time,
I =
will wake up in the middle of the night..and my nose will have cleared,
=
so I'll use the machine. In MY case, my throat passage is small. I
was =
advsed by the Doctors to lose wieght, and to have regular check
ups of =
both me and the machine...checking it to make sure the calibration
was =
consistant.
The mask and harness that goes around the head was a pest at
=
first..but it didn't take me long to get used to it.
The difference in myself before the CPAP and after..was like
night and =
day. Before I got it, I would wake up with a headache 90% of the time,
=
and was always tired. After...I felt like a new person.=20
If you have any other questions...Please don't hesitate
to ask...
Take Care..
Mark
----------
From: Amy
Sent: Wednesday, April 07, 1999 3:31 PM
To: APERT@LISTSERV.AOL.COM
Subject: Obstructive sleep
apnea
<<File: ATT00000.htm>>
Hi everyone,
I just talked to Judy Amerman for quite awhile today
about Alex just =
being diagnosed with"moderate-severe obstructive sleep apnea" and =
"periodic limb movement disorder". He had a sleep study 5 years ago
that =
showed nothing, and then this one from 4 weeks ago. I am glad that
=
something showed up because I have known this for a long time. The
next =
step is to find out what to do about it. Judy expressed concerns about
=
the Tonsillectomy-Adenoidectomy route and said that there could be
=
difficulties later when we are faced with facial surgery. I would =
appreciate any other opinions/experiences. We see the ENT doctor =
tomorrow and will hopefully find out more. Alex is having a hand surgery
=
next Friday also. I have finally decided to try to make it to
South =
Carolina in June with my boys! Hope to see ya'll there.
Amy Irvin
=========================================================================
Date: Thu, 8 Apr 1999
04:39:52 -0500
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From: "MARK E. DUBAS"
<Murphy@PLATTEVALLEY.NET>
Subject: Re: Myrtle Beach
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit
Cristy..
Your family will be remembered in my thoughts and prayers..as
are all families going thru surgeries/illness.
Good Luck..
Mark
----------
From: Cristy Williams
Sent: Wednesday, April 07, 1999 5:19 PM
To: APERT@LISTSERV.AOL.COM
Subject: Myrtle Beach
Just a quick note to everyone to say we got our reservsations at the
Crown
Reef for June 12, 13, 14, and will be coming home on the 15th Tuesday.
Carlee's cranial surgery is this coming Monday. We went for pre-op
yesterday.
Marilyn went with us. They had to stick Carlee twice to get blood.
Well keep
us in your thoughts and prayers.
The Williams Family
Cristy, Slick and Carlee
=========================================================================
Date: Thu, 8 Apr 1999
10:16:51 -0400
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From: Don Sears <dsears@SCRS.STATE.SC.US>
Subject: Re: question
MIME-Version: 1.0
Content-Type: text/plain
LeForte III is the "brand name" of the generic term "midface
advancement", like Coke is a brand of soft drink.
> -----Original Message-----
> From: Brent E. Young [SMTP:beyoung@IX.NETCOM.COM]
> Sent: Wednesday, April 07, 1999 8:29 PM
> To: APERT@LISTSERV.AOL.COM
> Subject: question
>
> Hi everyone,
>
> I had one question for all of you. I went to my orthodontist today
and
> he gave me some information on the Leforte III. What is the difference
> between that and the midface advancement?
>
> Kelly
=========================================================================
Date: Thu, 8 Apr 1999
11:00:04 EDT
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From: Gail Montes <Gailsvm@AOL.COM>
Subject: Midface advancement
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Dear Liz,
Just my two cents...my daughter, Rachel, age 4 had her tonsils and adenoids
removed when she was two years old because of her obstructive apnea.
Currently, her physicians are saying that they would like to do her
midface
advancement with distraction soon because of her obstructive apnea.
Just more information to gather!
Take care. Gail
=========================================================================
Date: Thu, 8 Apr 1999
08:44:25 -0700
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From: Apert Mail <apertmail@USWEST.NET>
Subject: Re: picture exchange info for
newcomers
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
Hi
this may sound silly or it may sound as if I am lost, (wish doesn't
suprise
me I am from time to time) but I can not find where the picture exchange
list is... if it is in the club house area, I am not getting that to
come up
right now so that might be it. But if it is somewhere else I hope someone
could help me... LOL
thank-you
Dawn
=========================================================================
Date: Thu, 8 Apr 1999
11:59:49 -0400
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From: Don Sears <dsears@SCRS.STATE.SC.US>
Subject: Re: picture exchange info for
newcomers
MIME-Version: 1.0
Content-Type: text/plain
The picture exchange page is not linked to anything for security
purposes. You have to go there directly. Here's the address:
http://www.apert.org/pictures/addresses/index.htm
---Don
"The only dumb question is the unspoken one"
> -----Original Message-----
> From: Apert Mail [SMTP:apertmail@USWEST.NET]
> Sent: Thursday, April 08, 1999 11:44 AM
> To: APERT@LISTSERV.AOL.COM
> Subject: Re: picture exchange info
for newcomers
>
> Hi
> this may sound silly or it may sound as if I am lost, (wish doesn't
> suprise
> me I am from time to time) but I can not find where the picture
> exchange
> list is... if it is in the club house area, I am not getting that
to
> come up
> right now so that might be it. But if it is somewhere else I hope
> someone
> could help me... LOL
> thank-you
>
Dawn
=========================================================================
Date: Thu, 8 Apr 1999
11:57:51 EDT
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From: Sheila MacDonald
<SMacdo1030@AOL.COM>
Subject: Surgery for Paige
MIME-Version: 1.0
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Hi everyone,
Just letting you know that Paige's hand surgery which was scheduled
for April
26 has been bumped up to tomorrow with Dr. Upton. If everyone
could say a
prayer for her we would really appreciate it.
Thanks,
Sheila
=========================================================================
Date: Thu, 8 Apr 1999
12:16:41 EDT
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From: Gail Montes <Gailsvm@AOL.COM>
Subject: Re: Surgery for Paige
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Sheila,
Thinking about you today and tomorrow!! Is it being done at Children's?
How
long will she be in? Rachel has an appt there on Tuesday.
Sending comforting thoughts your way. Take care. Gail
=========================================================================
Date: Thu, 8 Apr 1999
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From: Marilyn Williams
<Mbwill43@AOL.COM>
Subject: Re: Surgery for Paige
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SHEILA,PAIGE WILL BE IN OUR PRAYERS AND SO WILL THE EAST OF THE FAMILY.GOOD
LUCK AND GOD BE WITH YOU. MARILYN
=========================================================================
Date: Thu, 8 Apr 1999
16:28:12 EDT
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From: Susie Lower <Slower4000@AOL.COM>
Subject: Re: Surgery for Paige
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Sheila & Paige,
I will
be praying for you, and wish for
a speedy
recovery from your surgery. Best of
luck to you . Take Care,
Susie
=========================================================================
Date: Thu, 8 Apr 1999
13:49:23 -0700
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From: "Brent E. Young"
<beyoung@IX.NETCOM.COM>
Subject: Re: question
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Niemi, Liz wrote:
> Kelly,
>
> As far as I know, they're pretty much one in the same. The
Leforte
> III is
> the actual name of the procedure - advancing the bones of the
> mid-face. It
> is named after the man who developed the procedure (the actual cutting
> of
> the bone and advancing them). There is also the new distraction
> device
> procedure in conjunction with the Leforte III, which is now being
used
> to
> advance the bones of the mid-face at a slower rate. Apparently,
the
> distraction device allows a slower advancement of the bones so there
> is a
> less likely chance of the bones fracturing during the procedure.
This
>
> allows the procedure to be done on children at a younger age.
The
> youngest
> I've heard allowed is 4-5 years of age.
>
> I've corresponded with a Dr. Bryant Toth in San Francisco who is
very
> knowledgeable in advancing the bones of the mid-face with
> distraction. He
> indicated to me that they've measured approximately 22 pounds of
force
> put
> on the mid-face during this procedure. The facial bones have
to be
> strong
> enough to withhold that force, and he finds the earliest this can
be
> done
> successfully is around the age of four.
>
> If you would like his name and address for further correspondence,
let
> me
> know. I also have several articles and papersfrom him about
the
> subject.
> Let me know if there's anything else I can do for you.
>
> Liz Niemi
>
> -----Original Message-----
> From:
Brent E. Young [SMTP:beyoung@IX.NETCOM.COM]
> Sent:
Wednesday, April 07, 1999 7:29 PM
> To:
APERT@LISTSERV.AOL.COM
> Subject:
question
>
> Hi everyone,
>
> I had one question
for all of you. I went to my orthodontist
> today
> and
> he gave me some information
on the Leforte III. What is the
> difference
> between that and
the midface advancement?
>
> Kelly
Liz,
Thanks for the input. I would like to contact him. Please send me his
address, phone number and e-mail address if he has one. I would
really
appreciate it. My surgeon is in Stanford University and I would like
to
get another opinion.
Kelly
=========================================================================
Date: Thu, 8 Apr 1999
15:56:39 -0500
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From: Michael Sharrow
<msharrow@CAMALOTT.COM>
Subject: Re: Surgery for Paige
MIME-Version: 1.0
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Sheila and Page,
Our hearts are with you....warm wishes and much hope are sent
to you.
Michael (Talitha's dad)
=========================================================================
Date: Thu, 8 Apr 1999
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From: Cristy Williams
<CARLEE0604@AOL.COM>
Subject: Re: Surgery for Paige
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You got our prayers Sheila and Paige.
Cristy and Carlee
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Date: Thu, 8 Apr 1999
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From: rreed <rreed@CABLEONE.NET>
Subject: Praying for Paige and for little
Carlee
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
Content-Transfer-Encoding: 7bit
Hi Shelia, Just wanted you to know I'll be praying for you and for little
Paige. I hope all goes well. And prayers to little Carlee and her Mom.
Surgerys are a hard time for all concern. So heres a alot of prayers
for you
all that are having up and coming surgerys. Love to all Max or Maxine
=========================================================================
Date: Thu, 8 Apr 1999
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From: Nodrmat26@AOL.COM
Subject: Re: question
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<< knowledgeable in advancing the bones of the mid-face with distraction.
He
indicated to me that they've measured approximately 22 pounds
of force put
on the mid-face during this procedure. The facial bones
have to be strong
enough to withhold that force, and he finds the earliest this
can be done
successfully is around the age of four. >>
Zoey's Mom here, just wanted to add my 2 cents! Zoey is two and
had her
LafortIII in February. So far, so good. They said they
will likely have to
do some "fine tuning" later on in her life, but she has a trach and
we want
the trach out!
Later!
Christina (San Antonio)
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Date: Thu, 8 Apr 1999
21:12:57 -0400
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From: The Stroupes
<stroupes@MINDSPRING.COM>
Subject: Emotions after surgery
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Hi All!
Judy Stroupe here(Zach's mom 9 yrs). As usual, I lurk rather than =
communicate. Zach had hand surgery on Tuesday to release digits and
=
loosen tendons. Surgery went well but much longer than expected--6
=
hours. The past few days,=20
Zach seems to be somewhat depressed. He is not talking nearly
as much, =
does not want to play any of his favorite games and won't even attempt
=
Playstation even though we have adapted it so he can play with one
hand. =
After past surgeries, he has bounced back the next day with no
problem. =
Was wondering if anyone else has experienced this and would love
some =
suggestions.
Thanks,
Judy
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<BODY bgColor=3D#ffffff>
<DIV><FONT color=3D#000000 size=3D2>Hi All!</FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2>Judy Stroupe here(Zach's
mom 9 yrs). =
As usual, I=20
lurk rather than communicate. Zach had hand surgery on Tuesday to =
release digits=20
and loosen tendons. Surgery went well but much longer than expected--6=20
hours. The past few days, </FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2> Zach seems to be
somewhat =
depressed. He is=20
not talking nearly as much, does not want to play any of his favorite
=
games and=20
won't even attempt Playstation even though we have adapted it so he
can =
play=20
with one hand. After past surgeries, he has bounced back
the next =
day with=20
no problem. Was wondering if anyone else has experienced
this and =
would=20
love some suggestions.</FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2>Thanks,</FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2>Judy</FONT></DIV></BODY></HTML>
------=_NextPart_000_000C_01BE8204.9355B3E0--
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Date: Thu, 8 Apr 1999
21:48:15 -0400
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From: betsy bathrick
<bab@MHONLINE.NET>
Subject: bone distractors
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Hi everyone. Betsy Bathrick here. My son Griffin(22 months) had the
bone
distractors put in for his mid-face when he was 13 months old. I was
told the difference between the bone distractors and the laforte III
is
that with the bone distractors they break the upper jaw and as the
distractor is pushing the mid-face forward new bone is being made.
With
the Laforte III the upper jaw is broke and moved forwards. They're
planning on doing the distractors again when Griffin is a little older.
Probably at about 4 or 5.
Betsy Bathrick
Livingston,N.Y.
=========================================================================
Date: Thu, 8 Apr 1999
21:04:45 -0500
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From: Michael Sharrow
<msharrow@CAMALOTT.COM>
Subject: Re-Post
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Hi all...Just thought I'd re-post this information for LeForte III questions
and for those who missed it in the first post:
Here is an explanation for the RED System (Rigid External Distraction):
This information was sent to me by Dr. Jeffrey Fearon, The Craniofacial
Center, Dallas, Texas
RIGID EXTERNAL DISTRACTION SYSTEM (RED SYSTEM)
The use of a halo-distractor is very new in craniofacial surgery.
As of
February 1, 1999, I have treated ten patients with this system over
the past
year, and I know of two or three other cases which have been done around
the
country aside from my ten. In my opinion, it represents one of
the greatest
advances in craniofacial surgery since I have been in practice.
This system
consists of a frame which is affixed to the skull through screws on
either
side of the head. From a perpendicular bar is attached two screws
which I
ask the parents to tighten twice a day. These screws are attached
to wires
which are in turn attached to a dental splint which is secured to the
upper
teeth. When I first saw this device I was quite hesitant to place
it on a
child, however, in my experience they are very easily tolerated by
children
and many children have not wanted the device removed because of the
extra
attention they received while wearing one. This device is used
to bring the
mid-face forward in an operation called a LeFort III. With a
traditional
LeFort III, cuts are made across the nose, underneath the eyes, and
down the
sides of the cheekbones so that the upper jaw can be slid forward.
The
upper jaw is then held forward by wiring the teeth closed and bone
grafts
are then taken to fill in the spaces left by the advancement.
With the RED
system, the same cuts are made for a LeFort III, however, the mid-face
is
not immediately brought forward; therefore, the teeth never need to
be wired
closed. More importantly, it is not necessary to take bone grafts
to fill
in the gaps left by the typical LeFort III advancement so the operation
is
shorter. Instead, as the face is slowly brought forward by turning
the
screws twice a day the body fills in the bone by itself. After
distracting
twice a day over a three to four week period, the device is left on
for an
additional three to four weeks to make sure all the bone is well healed;
then it is removed with a five minute brief anesthetic. Almost
all the
children report absolutely no discomfort when the screws are turned
to
slowly bring the mid-face forward. Perhaps this is because each
complete
turn of the screw brings the mid-face forward only one-half (0.5) millimeter
(by comparison there are approximately twenty-five millimeters to one
inch).
Perhaps the best thing about the RED system is that the mid-face can
be
brought forward much further than with a traditional LeFort III, and
it is
my hope that by using this device I may avoid ever having to repeat
this
operation in teenage years (which is the standard). Patients
who have had
both operations say the procedure with the RED system is easier.
The patient will be in the hospital for approximately six days and would
need to stay in Dallas for several days after discharge. Postoperative
care
instructions and a tracking sheet will be given at this time.
The patient
would then return seven to eight weeks later for removal of the splint
and
RED system under anesthesia.
=========================================================================
Date: Thu, 8 Apr 1999
23:04:22 EDT
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From: Sheila MacDonald
<SMacdo1030@AOL.COM>
Subject: Re: Surgery for Paige
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Our prayers are with you also during Carlee's surgery.
Love,
Sheila
=========================================================================
Date: Thu, 8 Apr 1999
22:59:58 EDT
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From: Liz Saylan <LSaylan@AOL.COM>
Subject: Re: Surgery for Paige
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Will say some prayers for Paige and hope the surgery goes well.
Liz Saylan
=========================================================================
Date: Fri, 9 Apr 1999
16:31:27 +1200
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From: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: Re: Emotions after surgery
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Hi Judy
We found that Amy took longer to bounce back after each operation.
I've been away, so am a bit behind with things - Best wishes to all those going in for more surgery - and congratulations to those coming out.
Regards
Ann
=========================================================================
Date: Fri, 9 Apr 1999
05:29:13 -0500
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From: Dora Jefferson
<dajeff@SIU.EDU>
Organization: Southern Illinois University at Carbondale
Subject: Re: Seth had a big night!!
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Dear Friends,
I just wanted to share a joy. Seth and a friend, Joel, joined
Cub
Scouts a few months ago and have recently been working on their cars
for
the pine box derby. Joel is nine and had to have as much help
on his
car as Seth did. That was an interesting comparison for us.
Last night was the big race. There were 16 cars in the heat, double
eliminations. It was really exciting. Seth had a grat time
and was
really enthusiastic. Every time his car raced the crowd went
wild.
When his car came in 2nd, he beamed all over. It was a great
night.
When we got home he said, "Everybody cheered the most for me."
It was
true, they had, not just the parents but the boys shouted out "you
can
do it" and "go Seth".
I couldn't help but remember how concerned I felt when he was born,
not
knowing a thing about his condition and worrying about his future,
and
what he would be able to do. Eight years later his future looks pretty
bright and I'd say that he can do pretty much anything he puts his
mind
to.
Peace, Dori
=========================================================================
Date: Fri, 9 Apr 1999
08:37:36 -0400
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From: Amy <AIRVIN@COLUMBUS.RR.COM>
Subject: Re: Emotions after surgery
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Judy,
Alex (9 years) is having surgery on his right hand on Friday to release
=
the ring and middle fingers. I am interested in how to adapt
=
playstation for one handed play for Alex. Please advise! I hope Zach's
=
spirits start picking up. I can't help you here because Alex hasn't
had =
a hand surgery since he was 2 1/2 and any other surgery since he was
=
six(and that was eye muscles!). Maybe he is worried about what is under
=
the bandages and how it will look. Keep us posted on his recovery!
Take =
care. Amy Irvin, Ohio
-----Original Message-----
From: The Stroupes <stroupes@MINDSPRING.COM>
To: APERT@LISTSERV.AOL.COM <APERT@LISTSERV.AOL.COM>
Date: Thursday, April 08, 1999 9:12 PM
Subject: Emotions after surgery
=20
=20
Hi All!
Judy Stroupe here(Zach's mom 9 yrs). As usual, I
lurk rather than =
communicate. Zach had hand surgery on Tuesday to release digits and
=
loosen tendons. Surgery went well but much longer than expected--6
=
hours. The past few days,=20
Zach seems to be somewhat depressed. He is
not talking nearly as =
much, does not want to play any of his favorite games and won't even
=
attempt Playstation even though we have adapted it so he can play with
=
one hand. After past surgeries, he has bounced back the next
day with =
no problem. Was wondering if anyone else has experienced this
and would =
love some suggestions.
Thanks,
Judy
------=_NextPart_000_000B_01BE8264.38753B20
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=
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</HEAD>
<BODY bgColor=3D#ffffff>
<DIV><FONT color=3D#000000 size=3D2>Judy,</FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2>Alex (9 years) is having
surgery on =
his right=20
hand on Friday to release the ring and middle fingers. I
am =
interested in=20
how to adapt playstation for one handed play for Alex. Please advise!
I =
hope=20
Zach's spirits start picking up. I can't help you here because Alex
=
hasn't had a=20
hand surgery since he was 2 1/2 and any other surgery since he was
=
six(and that=20
was eye muscles!). Maybe he is worried about what is under the bandages
=
and how=20
it will look. Keep us posted on his recovery! Take care. Amy Irvin,=20
Ohio</FONT></DIV>
<BLOCKQUOTE=20
style=3D"BORDER-LEFT: #000000 solid 2px; MARGIN-LEFT: 5px; PADDING-LEFT:
=
5px">
<DIV><FONT face=3DArial size=3D2><B>-----Original
=
Message-----</B><BR><B>From:=20
</B>The Stroupes <<A=20
=
href=3D"mailto:stroupes@MINDSPRING.COM">stroupes@MINDSPRING.COM</A>><B=
R><B>To:=20
</B><A =
href=3D"mailto:APERT@LISTSERV.AOL.COM">APERT@LISTSERV.AOL.COM</A>=20
<<A=20
=
href=3D"mailto:APERT@LISTSERV.AOL.COM">APERT@LISTSERV.AOL.COM</A>><BR>=
<B>Date:=20
</B>Thursday, April 08, 1999 9:12 PM<BR><B>Subject:
</B>Emotions =
after=20
surgery<BR><BR></DIV></FONT>
<DIV><FONT color=3D#000000 size=3D2>Hi All!</FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2>Judy Stroupe
here(Zach's mom 9 =
yrs). As=20
usual, I lurk rather than communicate. Zach had
hand surgery on =
Tuesday to=20
release digits and loosen tendons. Surgery went
well but much longer =
than=20
expected--6 hours. The past few days, </FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2> Zach
seems to be somewhat =
depressed.=20
He is not talking nearly as much, does not want
to play any of his =
favorite=20
games and won't even attempt Playstation even though
we have adapted =
it so=20
he can play with one hand. After past
surgeries, he has =
bounced back=20
the next day with no problem. Was wondering
if anyone else has =
experienced this and would love some suggestions.</FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2>Thanks,</FONT></DIV>
<DIV><FONT color=3D#000000 =
size=3D2>Judy</FONT></DIV></BLOCKQUOTE></BODY></HTML>
------=_NextPart_000_000B_01BE8264.38753B20--
=========================================================================
Date: Fri, 9 Apr 1999
23:59:34 -0400
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From: tony zieth <zieth@HOTNET.COM.AU>
Subject: Re: Just wondering.
MIME-Version: 1.0
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Pat,
Thanks for replying to my post on Breastfeeding,
It was very intresting.
My Address is
Nicki Zieth
4 wargon Crt
Petrie
QLD AUSTRALIA
I would be very intrested in any booklets of info you have, i can always
send you to post cost if you like.
Apart from my training to become a lactation consultant, I have looked
into
inducing lactation for our adopted daughter, being a failure to thrive
and
a reflux baby I think even a little amount of breast milk will help
her. I
have decided to wait and see what she's like first, but this is a very
intresting topic for me,
so thank you very much
Nicki @@@@ Australia@@@@@@
=========================================================================
Date: Fri, 9 Apr 1999
11:06:38 -0600
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From: baconsmith <bluenose@TELUSPLANET.NET>
Subject: Re: Just wondering.
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Hi Nicki, It is in the envelope and being posted today. Expect
it in about
two weeks.
Also try contacting my friend Jackie Miller who wrote
the book. She is
very knowledgable and would love to hear from you.
her e address is jgmiller@telusplanet.net
Also, I have a very old atlas. Where is Petrie close to?
I travelled
Queensland for six months several years ago, and am interested in finding
you on my map.
Thanks. Pat in Canada
Pat,
>Thanks for replying to my post on Breastfeeding,
>It was very intresting.
>My Address is
>Nicki Zieth
>4 wargon Crt
>Petrie
>QLD AUSTRALIA
>I would be very intrested in any booklets of info you have, i can
always
>send you to post cost if you like.
>Apart from my training to become a lactation consultant, I have looked
into
>inducing lactation for our adopted daughter, being a failure to thrive
and
>a reflux baby I think even a little amount of breast milk will help
her. I
>have decided to wait and see what she's like first, but this is a
very
>intresting topic for me,
>so thank you very much
>Nicki @@@@ Australia@@@@@@
>
=========================================================================
Date: Fri, 9 Apr 1999
14:22:36 EDT
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From: Yonstein@AOL.COM
Subject: Re: Seth had a big night!!
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Way to go Seth. Boy is it so nice to hear that, Dori.
That's exactly the
same thoughts I had when Emily was born.
Along the same lines we were at my mom's house with my neices and nephews
and
Emily was playing with them in the backyard and they were taking here
down
the slide. I got a tear in my eye because when she was born I
said to my
mom, all I want is for her to be able to run around the backyard and
play
with her cousins. I didn't think she would at that time.
Well, she can't
run yet, but she is right there in them, part of whatever they are
doing.
Take care,
Janine
=========================================================================
Date: Fri, 9 Apr 1999
11:37:01 -0700
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From: rreed <rreed@CABLEONE.NET>
Subject: ALRIGHT SETH !!!WHAT AWAY TO
GO!!!!
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ALRIGHT SETH!!! WHAT AWAY TO GO!!!!! I have always said that
we Aperts can
do anything once we set our minds to it! Along with the Lords help.
Look at
me now. I set my mind to something and I can do it, with the Lords
help. The
doctors said I wouldn't be able to do anything when I was born back
in 1954,
Boy were they wrong. The Reeds are proud of you Seth along with your
Mom and
Dad Iam sure. Keep up the great work and show those people back East
we
Aperts are a force to be reckon with.Take some pictures of Seth with
his car
I would love to see it. I'll send you one of me as soon as I get some
made.
Take Care. Again what a way to go Seth. Max or Maxine
=========================================================================
Date: Fri, 9 Apr 1999
11:43:17 -0700
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From: rreed <rreed@CABLEONE.NET>
Subject: Thanks Dori
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Thanks Dori for sharing Seth great race. I loved it . Max or Maxine
in
Modesto, the Sun is out Calif.
=========================================================================
Date: Fri, 9 Apr 1999
13:58:54 -0500
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From: "Allison's: GO
USA, Inc" <gousa@GOUSAINC.COM>
Subject: Re: Seth had a big night!!
In-Reply-To: <370DD679.E4EF2AFE@siu.edu>
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Good Job Seth!
Shawn was excited to hear you were a race car driver.
I wish we could have been there in the crowd to cheer you on.
We hope to see you again soon. Shawn says "Hi".
Mike Allison
=========================================================================
Date: Fri, 9 Apr 1999
14:05:54 -0500
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From: "MARK E. DUBAS"
<Murphy@PLATTEVALLEY.NET>
Subject: Re: Seth had a big night!!
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Hi Dori...
=20
Please give my congratulations to Seth...=20
You couldn't have said it any better...He can and will
do ANYTHING he =
sets his mind to, and I know Seth has a bright future.Haveing Aperts
=
hasn't slowed me up one bit.
Take care,
Mark
----------
From: Dora Jefferson
Sent: Friday, April 09, 1999 5:29 AM
To: APERT@LISTSERV.AOL.COM
Subject: Re: Seth had a big
night!!
Dear Friends,
I just wanted to share a joy. Seth and a friend, Joel, joined
Cub
Scouts a few months ago and have recently been working on their cars
for
the pine box derby. Joel is nine and had to have as much help
on his
car as Seth did. That was an interesting comparison for us.
Last night was the big race. There were 16 cars in the heat, double
eliminations. It was really exciting. Seth had a grat time
and was
really enthusiastic. Every time his car raced the crowd went
wild.
When his car came in 2nd, he beamed all over. It was a great
night.
When we got home he said, "Everybody cheered the most for me."
It was
true, they had, not just the parents but the boys shouted out "you
can
do it" and "go Seth".
I couldn't help but remember how concerned I felt when he was born,
not
knowing a thing about his condition and worrying about his future,
and
what he would be able to do. Eight years later his future looks pretty
bright and I'd say that he can do pretty much anything he puts his
mind
to.
Peace, Dori
=========================================================================
Date: Fri, 9 Apr 1999
16:00:19 -0400
Reply-To: Information exchange and Internet
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From: betsy bathrick
<bab@MHONLINE.NET>
Subject: hello
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Hi Janine. We live aboeut 45 miles south of Albany. Griffin was the
youngest child our plastic surgeon had used it on. We would ask him
questions like if it would effect Griffin's eating ( which it did) and
he would say he really didn't know. The neurosurgeon he worked with
had
never seen them before and none of the nurses or doctors at the hospital
either. I think the reason they used them on Griffin when he was so
young was because he had his first cranial operation when he was 5
months old(11/97) and in March of '99 his head was already fused
together again. When they did the bone distractors it pushed his
forehead as well as his mid-face forward. The operation took about
10-11
hours. The operation was in July and in October he had another surgery
to take out all the apparatus in his head. He only had 2 metal wire
things sticking out behind his ears everything else was under his skin.
Well I've been rambling on long enough if you have any other questions
please feel free to ask. My family and I have gotten so much help from
the listserv. Thank you
Betsy Bathrick
=========================================================================
Date: Fri, 9 Apr 1999
16:51:25 EDT
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From: Mary Bresnahan
<Munch35738@AOL.COM>
Subject: Re: Surgery for Paige
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Gail, hi I know it has been a long time. I am planning to go back
north to
New Hampshire at the end of may. I plan on attempting to see
my old docs. I
has been several long years. Mary in Florida.
PS still let me know when you are coming to florida.
=========================================================================
Date: Fri, 9 Apr 1999
15:08:06 -0700
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From: "Christine L.
Clark" <apertnet@IX.NETCOM.COM>
Organization: APERT SUPPORT & INFORMATION NETWORK
Subject: Respose to Joanne
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>
> gorgeous weather here for four straight days!!! We are on a roll!
> Joanne
Your roll turned into a tornado I hear. Hope no one we know was
near it
and all are OK!!
Christine (in rainy California)
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Date: Fri, 9 Apr 1999
22:14:24 -0400
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From: "cynthia f. blodgett"
<blodgett@PENN.COM>
Subject: SIGNOFF APERT
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I wish to sign off the listserv. Thank you. C. Blodgett
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Date: Fri, 9 Apr 1999
21:24:49 -0500
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From: "Niemi, Liz"
<Liz.Niemi@NMB.NORWEST.COM>
Subject: Re: Midface advancement
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Gail,
I spoke to Jake's ENT today after his bronchoscopy, and he stated that
Jake
will definitely need a mid-face advancement around the age of 4-5.
Would
you recommend that his tonsils and adenoids be taken out before then??
Did
taking them out help her obstructive sleep apnea at all??
Liz
-----Original Message-----
From: Gail Montes
[SMTP:Gailsvm@AOL.COM]
Sent: Thursday,
April 08, 1999 10:00 AM
To:
APERT@LISTSERV.AOL.COM
Subject:
Midface advancement
Dear Liz,
Just my two cents...my daughter,
Rachel, age 4 had her tonsils and
adenoids
removed when she was two
years old because of her obstructive apnea.
Currently, her physicians
are saying that they would like to do her
midface
advancement with distraction
soon because of her obstructive apnea.
Just more information to
gather!
Take care. Gail
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Date: Fri, 9 Apr 1999
21:31:40 -0500
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From: "Niemi, Liz"
<Liz.Niemi@NMB.NORWEST.COM>
Subject: Re: Respose to Joanne
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Christine,
Are you still producing the Apert Networking List and Newsletter?
Just
wondering. I must tell youAfter Jake was born, I called and talked
with you
for quite awhile. You sent me back copies of the newsletters,
and they were
the best things we've could've gotten our hands on at the time.
We learned
more about Apert Syndrome from those newsletters, than any paper, article,
or formal newsletter we had received. How is your health?
I hope things
are going well for you and your family.
Liz, Steve, Taylor & Jake Niemi
-----Original Message-----
From: Christine
L. Clark [SMTP:apertnet@IX.NETCOM.COM]
Sent: Friday,
April 09, 1999 5:08 PM
To:
APERT@LISTSERV.AOL.COM
Subject:
Respose to Joanne
>
> gorgeous weather here
for four straight days!!! We are on a roll!
> Joanne
Your roll turned into a tornado
I hear. Hope no one we know was
near it
and all are OK!!
Christine (in rainy California)
=========================================================================
Date: Fri, 9 Apr 1999
22:41:02 EDT
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From: Dana White <Danabrger@AOL.COM>
Subject: Howdy from KY
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Howdy! My name is Dana
White. I live in Louisville, Kentucky. I am
30 years old (ugghh!) and I too was born with Apert's syndrome.
I found this
web site a few months ago while researching information regarding Apert's
syndrome and genetics. I have been "lurking" ever since.
I informed my
mother about this site and she marvels at the thought of other parents
having
someone to talk to regarding all the difficult decisions she and my
father
were forced to make without having anybody with whom they could share
fears,
concerns, and doubts.
I have had multiple surgeries.
I realize after reading your stories
that I was fortunate to have been born with all five fingers.
My pinky and
ring fingers on both hands are "normal". My middle fingers each
have only
the distal knuckles. My index fingers have no knuckles.
My thumbs are
abducted and about 1" wide. The only surgery I have had on my
hands is an
attempt to straighten and lengthen my left thumb. I had always
been told to
wait until I was older to have surgery on my hands. I proceeded
with the
initial surgery at age 19. After the torture of the surgery with
the post op
external fixator, in conjunction with the limited cosmetic and functional
difference, I opted to leave my right thumb ( I am right-hand dominant)
alone. I write, type and essentially do anything I desire with
my hands.
My feet are considered "webbed".
I have the tips of all five toes.
I had surgery as an infant to remove excessive bone from each big toe
and
wore casts in an attempt to align my feet, which are still slightly
turned
outward. At age 19 (the same time I had my left thumb operated
on), I had
surgery on my left foot. (I was certainly a sight with my crutches
and
external fixator while attending college, but I hated surgery and wanted
to
get as much done at one time as the doctors would allow!). The
surgery
"lifted" the ball of my foot and shaved some excess bone off of my
big toe.
I did not do this for cosmetic reasons, but simply to allow myself
to wear
typical shoes. I later returned to have the right foot done as
well and am
very pleased that both feet fit reasonably well into "cute" shoes.
I reached
all the developmental milestones (walking, etc.) within the "normal"
range of
time. My orthopedic surgeon was Dr. Harold Kleinert. (This
group just
transplanted the first human hand here in Louisville!!!)
I had cranial suture release
surgery at about 6 weeks. At the age of
10, I had the mid-face advancement surgery. I later had additional
surgeries, one to re-break my lower jaw and re-align (age 15) and another
to
build up the bridge of my nose and to move my eyes closer together
(age 17).
The leader of my craniofacial team, Dr. Gerald D. Verdi had more surgeries
planned but I had had enough disruption of my life (missing school,
etc.).
I am the middle child of
two great parents. My parents raised me no
different than my brother or sister. Mom did tend to be overprotective
and
still is to this date. I played basketball, softball and was
a cheerleader.
I worked my way through college at Sears--sold sporting goods equipment.
I
obtained a Bachelor degree in Psychology and Master degree in Social
Work
from the University of Louisville. I worked 4 years as a social
worker in
the Trauma Unit of our regional trauma hospital. I now work as
a case
manager for the Pediatric/Brain/Spinal Cord Injury teams at Frazier
Rehab
Hospital. I have always wanted to help families in crisis to
navigate the
nightmare we now call healthcare administration. I love what
I do and have
found my niche. It is amazing what people of all ages can do
to accomodate
to life.
I have been married for
almost six years to the greatest man who was
truly made for me. We are considering our options for starting
a family
given my genetic predisposition. I have read multiple articles
which state I
have a 50% chance of having offspring with Apert's. Has
anyone heard
differently?
I better end here as this
note has become extensive. Please feel
free to ask me any questions you may have and I will be honest with
you. You
can email me directly if you prefer. Danabrger@AOL.com
Sincerely, Dana
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Date: Fri, 9 Apr 1999
11:31:54 -0400
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Comments: RFC822 error: <W> Incorrect or
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ignored.
From: Andrea Gartner
<agartner@PEGANET.NET>
Subject: Re: Seth had a big night!!
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WAY TO GO SETH!!!
KEEP IT UP!
I agree totally, we with Apert can do just about anything we put our
mind
too.
I love hearing about things like this.
-Andrea
=========================================================================
Date: Fri, 9 Apr 1999
20:49:24 -0700
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From: rreed <rreed@CABLEONE.NET>
Subject: Welcome to the family Dana
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Hi Dana, Welcome to this great family. My name is Maxine Reed and I
too have
Aperts. But unlike you I have the web hands part of the Aperts. your
a
youngonpared to me who is 44 and will be 45!!! in 2 months! I still
can't
beileve that I will be 45 on June 3. I too Iam married and have a healthy
very normal 15 going on 20 year old daughter named Sarah. Like you
I too was
told that I would have a 50/50 chance of having a normal child but
I new
that if the Lord wanted me to have a child who cared what it looked
like. So
the Lord bless me with a healthy girl and like you the greatest and
loving
man who was truely made for me. I too was raised in a loving family
but Iam
the baby of the family, and like you my Mom too still is overly protects
me
but I guess thats good too. I too Iam able to do everything. I think
you and
I grew up alot a like, and like your parents, when I was born which
was in
1954 they were told to put me in instution. But my parent said no and
besides they were all full. I didn't have quite all the college education
like you because I was able to get a job right out of high school,
and
worked there until I had my baby girl. So Iam a stay at home mom and
I do
babysitting on the side. Well this is quite long for a welcome but
I thought
I would let you know that you're not the only one at 30 there's a couple
more out there. Iam just the oldest one. So if you want someone to
talk to
who's had some experienced with life as a Apert's person just E-mail
me here
or at rreed@cableone.net or you can call me at(209) 524-2141 best time
to
get a hold of me is after 4 Iam in Calif. so I think you are about
3 hours
ahead. Hows Ky.? It sounds like you have a great job. That'ss great.
Take
Care . You can call me Max or Maxine. I go by both. Max or Maxine in
Sunny
Modesto, Calif. Where George Lucus is from. The man who made Star Wars
P.S
Excuse the mistakes Iam still learning the computer. Sometimes I can't
seen
to fix my mistakes.
=========================================================================
Date: Sat, 10 Apr 1999
09:16:03 -0400
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From: tony zieth <zieth@HOTNET.COM.AU>
Subject: Re: Just wondering.
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Pat,
thankyou so much, Petrie in in Brisbane, because of postcodes or zipcodes
as you call them, we don't have to put the city we live in, its on
the
north side of Brisbane (cairns side)
Thanks again,
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: Fri, 9 Apr 1999
21:03:02 +0000
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From: "J. G. Lindamood"
<chanan8@JUNO.COM>
Subject: Seth
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When Seth accomplishes his greatest dream, and the whole world is looking
to him, I will be able to say "I met him when he was a young boy"!
Way
to go Seth!!! I want to see the winning car too!
As for the tornado, I heard bits and pieces about it on the tvs in the
patients room. (It's hard to keep up with something going in
and out of
rooms and sometimes each patient is watching a different channel.)
I
didn't get home in time for the news, but will try to stay up for the
late broadcast. My phone hasn't rung with news. Hopefully
the saying
"no news is good news" will be true in this case. We did lose
the warm
temperatures too.
It has been a rough week for me. One of my "favorite" patients
passed
away suddenly. Yes, I'm not supposed to have favorites, I guess
I really
appreciate the ones who respond to my attempts to help them.
Most of our
patients are really sick and can't respond. Nonetheless, I was
in shock
to hear of her passing. I had provided videos for her and her
son to
watch and tried to help create some tender memories for him.
Tonight
was the viewing and I had a hard time deciding if I should go.
I now
know I want to take a class in "What to say to the family at a Viewing"
I kept pinching myself for every stupid thing that came out of my mouth.
Then I twisted my ankle trying to retrieve a wayward helium balloon
in a
patient's room. I limped for a day and walked gingerly today.
Thank goodness it's Friday. Basket making plans are in the works
for
tomorrow. Hope all is well!
Joanne
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Date: Sat, 10 Apr 1999
07:50:14 EDT
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From: BBarn60368@AOL.COM
Subject: Re: Howdy from KY
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Dear Dana:
WOW! What an inspiration you are to us and our children!
Thanks so much for
speaking up and stick around, please!
Much love,
Alice in Orlando, Fl.
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Date: Sat, 10 Apr 1999
08:14:48 EDT
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From: BBarn60368@AOL.COM
Subject: Re: Loosing your patient
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Joanne:
It's only human to have favorites and "take it tough" when you loose
them. I
believe the best thing to say to the family is what you loved about
their
loved one and what their loved one did for you. It is comforting
to the
family to be told about their loved one's attributes and how these
attributes
were able to help people. This might also be the most helpful
in a personal
note mailed to the family rather than at the wake when they are so
upset.
Hope I've helped,
Alice in Orlando, Fl.
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Date: Sat, 10 Apr 1999
08:50:56 EDT
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From: Gail Montes <Gailsvm@AOL.COM>
Subject: Re: Midface advancement
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Hi Liz,
It's difficult to give a recommendation whether or not to do a T &
A; each
child is different. Even though there are so many similarities
and
procedures are the same, each bone structure can be minutely different.
From my personal view, I was willing to give Rachel the most room for
breathing. The tonsillectomy/adenoidectomy appeared to help initially
(she
was two at the time), but then she other other issues crop up which
affected
her breathing too. Last summer/fall she had a decompression
of her spinal
cord at the level of C1 and base of the skull. Her breathing
was
dramatically better after that. Now hearing her, I can hear some
obstruction
and during REM sleep she has moderately severe obstructive sleep apnea.
We
are now looking at the midface advancement via distraction, possibly
this
summer.
I hope this helps you with your decision-making. It is never easy
to make
these decisions. I am still struggling with the midface advancements
via
distraction for the summer. Faith helps us to make these difficult
decisions
and keep us going forward.
Enjoy your weekend. Spring has arrived here, finally! What
part of the
country are you from?
Take care. Gail
=========================================================================
Date: Sat, 10 Apr 1999
09:20:43 -0400
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From: Jim and Kelly
Younkin <JimandKelly@YOUNKIN.COM>
Subject: Best wishes
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Hi everyone! Was away from the computer all week so I'm now wading
through
80 messages. Our thoughts and prayers are with everyone who went
through
surgeries and tests this week. Hope all are doing fine.
How is Teeter
doing? Congratulations to Seth!! Just a quick comment on
the obstructive
apnea--our Sara had her tonsils/adenoids removed at 15 months and it
made a
huge difference when she slept. In the last 6 months or so, she's
really
starting to obstruct again when she sleeps (she just turned 3)
We're
scheduled for a sleep study on 4/13, but we're pretty much out of surgical
options for the apnea until her midface. Take care! Kelly
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Date: Sat, 10 Apr 1999
09:38:40 EDT
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From: Shirley Tanner
<TANRANCH@AOL.COM>
Subject: Re: Seth had a big night!!
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CONGRATULATIONS SETH!! Way to go!!!
Love,
Shirley
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Date: Sat, 10 Apr 1999
09:49:56 EDT
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From: Shirley Tanner
<TANRANCH@AOL.COM>
Subject: Re: Howdy from KY
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Dear Dana,
You are truly another inspiration to all of
us with children with
Aperts. Sounds like you have done very well for yourself.
After reading
letters like yours I know that Collin will be able to do whatever he
wants in
life! Thanks for sharing.
Love,
Shirley Tanner
Mom of Collin - 7 years
Hartford, Alabama
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Date: Sat, 10 Apr 1999
19:31:40 EDT
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From: Edelman Member
<CoH1862@AOL.COM>
Subject: Re: Howdy from KY
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Welcome Dana. We have been to the Klienert (sp) Group also. They
are
wonderful Drs. I also lurk more than respond. We just returned from
Lexington, Ky. Thursday. Again welcome to the group.
Diane in Tn.
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Date: Sat, 10 Apr 1999
19:41:41 EDT
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From: Gail Montes <Gailsvm@AOL.COM>
Subject: Re: Surgery for Paige
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Hi Mary,
Have fun in New Hampshire in May; hopefully it won't be too chilly!
We'll
let you know when we'll be in Florida!
Gail
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Date: Sat, 10 Apr 1999
20:24:40 EDT
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From: Sheila MacDonald
<SMacdo1030@AOL.COM>
Subject: Thank you for all the prayers
for Paige
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All the prayers that was sent to Paige came true. Paige had a
very good
surgery and came home today. Still a little groggy but, adjusting
very well
to the cast already. I want to wish everyone who is going through
surgery
the best. And I would also like to congratulate Seth on winning second
place
in the Car race. What a great accomplishment. I would also
like to welcome
Dana to our family...your story brought a tear to my eye..you are truly
an
inspiration to us all...thank you!!!
That's all for now,
Sheila
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Date: Sun, 11 Apr 1999
00:11:37 -0400
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From: Rich Thornquist
<rlthorn@EARTHLINK.NET>
Subject: Re: Howdy from KY
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Dana,
Welcome to this wonderful family. I have been on the listserv
since 1/98 and
have enjoyed it ever since. It sounds like you have had a wonderful
life so far
and extremely full. You are an inspiration to all of us parents.
My name is Lynn Thornquist, and my son, Andrew, was also born with Apert.
He is
2 1/2 years old and had his first surgery when he was 3 months old
to release
almost all sutures except for the one of the top of skull, which they
closed. He
had a Frontal Advancement when he was 9 months old, with plate removal
at 14
months old. Two hand surgeries to release fingers and open web
space between
thumb and first finger. One surgery on the feet to remove ingrown
toenails
(which have grown back) and two eartube surgeries. Andrew is
an active, vibrant
little boy. You would never know that he even has a disability.
In just 10 or
so days, he will become a big brother. Let's see how he likes
sharing Daddy.
All of Andrew's surgeries have been done at Children's Hospital of Boston.
I
have to say that his doctors have given him a chance at a better life.
That is our story in a nutshell. Glad to have you with us.
Thank you for your
inspirational story and to "yes" is the answer to your question.
I have been
told the same thing when Andrew decides to have children. He
has a 50% chance of
having a child with Apert. Although Andrew's doctor is trying
to change that for
when Andrew and others his age want children. But that is for
another day.
Hope to hear from you alot.
Lynn
rlthorn@earthlink.net
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Date: Sun, 11 Apr 1999
08:37:05 EDT
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From: GSieb91515@AOL.COM
Subject: Re: Myrtle Beach
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Alice,
I did the same exact thing as you. After the second stick I said,
"you have
one more chance and that's it!" Fortunately, they got it that
time. I have
noticed too, that it does get better with age. We are now re-evaluating
whether we can maybe make it in June. We would have to fly in
to Raleigh and
then rent a car and drive 2 hours. I will check out the logistics
and
hopefully make a decision shortly. I'm sure the hotel is getting
close to
full by now.
Brenda
Houston
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Date: Sun, 11 Apr 1999
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Internet safe haven for Apert Syndrome
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From: GSieb91515@AOL.COM
Subject: Re: Hi everybody !
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Thanks Max for your input on the toes. I'm compiling as much feedback
as
possible and for now we are not going to do anymore surgeries that
aren't
necessary. We will probably have an eye muscle surgery some time
in the next
year. At this point we are using drops to force the bad eye to
function
(same concept as the patch). After several months of that we
will go back
and talk about that surgery. You are a great inspiration to us
and we thank
God that he made you available to us.
Brenda
Houston
=========================================================================
Date: Sun, 11 Apr 1999
08:37:06 EDT
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: GSieb91515@AOL.COM
Subject: Re: Myrtle Beach
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Cristy,
We will definately have Carlee and your family in our prayers.
We have been
through 2 cranial surgeries and the last one was 8 hrs. long.
I know how
scary and anxious this time is and there is nothing that can change
those
feelings. However, knowing that there are others who have been
there is
comforting. Let us know how it goes when you get a moment.
Brenda
Houston
=========================================================================
Date: Sun, 11 Apr 1999
08:37:03 EDT
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: GSieb91515@AOL.COM
Subject: Re: Seth had a big night!!
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Way to go Seth! Congratulations on your big night.
I'm sure you will have
many more like that. We hope that when Jonathan is that age he
is able to
share such joy.
The Sieberts
Houston
=========================================================================
Date: Sun, 11 Apr 1999
11:09:37 EDT
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Debbie Shepherd
<Dshep9141@AOL.COM>
Subject: welcome Dana
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Dear Dana what a wonderful letter! It is an inspiration to all of us.
Knowing
that you, and Maxine and others in the same situation as our children
have
done so well. It gives me great hope for Jillian's future.My
daughter
Jillian is almost 2 1/2. She is currently undiagnosed. However her
characteristics are very similar to aperts. this listserver has been
a God
send. So much information. And best of all hands on expierience from
people
that are actually going thru what my daughter and the rest of the family
are
going thru. The emotions come out with each and every letter. I can
reallly
relate to alot what everyone is saying. I look forward every day to
reading
my mail. I know once Jillian is older connecting with the people in
this
loving caring group will be invaluable to her. God bless all those
facing or
coming out of surgery. My thoughts and prayers are with all of you.
Congrats
to all the achievers!
Love Debbie and Jillian
=========================================================================
Date: Sun, 11 Apr 1999
14:03:49 -0400
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: betsy bathrick
<bab@MHONLINE.NET>
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Hi Ann. My husband David and I have 6 children all boys. They are
Brendan(almost 13), Ryan(11), Garry(9), Reilly(almost 4), Griffin(22
months, aperts), and Hunter(5 months). Griffin has aperts and
hypotonia(low muscle tone). Griffin has had 2 hand surgeries(he has 4
fingers on each hand), 1 cranial, 1 cranial mid-face(bone distracters),
and 1 surgery to take out the apparatus in his head from the bone
distracters. He is scheduled for a catscan on 5/6 to see if his head has
fused together again. We were hoping this year would be surgery free but
it doesn't look that way. Griffin is behind in alot of areas because of
his low muscle tone. He gets pt 3 times a week, ot twice a week, speech
twice a week, special ed twice a week, and a nutritionist 1 a week. He
scoots around on his back instead of crawling. The doctors said he would
probably walk when he was 2 and a half then they said probably 3. It
looks like he'll be a little older than that. He's really come a long
way in the last 6 months. He's such a great kid. He doesn't let anything
bother him, he's always happy.
Sincerely,
Betsy
=========================================================================
Date: Sun, 11 Apr 1999
16:58:42 -0500
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: "Niemi, Liz"
<Liz.Niemi@NMB.NORWEST.COM>
Subject: Re: Midface advancement
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Hi Gail!
Thanks, you're right, it is a very difficult decision. I just
hope that one
day, Jake says something nice about his parents....especially that
we've
loved him from day one, and never treated him any differently than
his big
sister. I am inspired by the adults with Apert's here, for not
only for
their drive and love of life, but for their willingness to share with
the
rest of us, so that we may give our children the best. Isn't
that what we
all want for them anyway?? THANK YOU!
I'm from Minnesota!! I was born and raised here. My husband
and I
transferred around with his job for about 5 years before having our
children. We lived in Texas, Florida and Arizona. Somehow
(call me crazy)
I missed the cooler weather and change of seasons. I think it's
better for
Jake anyway, he always seems to be so hot all the time.
Jake had his bronchoscopy this last Friday. They laser opened
his airway to
make it a little larger, and said we can come back on May 3rd to remove
his
trach. They will put him through a sleep study (in-home) first
with the
trach, then a sleep study at the hospital with the trach out.
If he does
well on both, we can bring him home without it. It seems unreal
to us, so
we are cautiously optimistic at this point. The ENT did pull
his trach out
and taped the hole shut in pre-op. Jake's breathing great!!
His oxygen
sats stayed the same. Again, we'll wait and see.
Thanks for writing back...take care!
Liz
-----Original Message-----
From: Gail Montes
[SMTP:Gailsvm@AOL.COM]
Sent: Saturday,
April 10, 1999 7:51 AM
To:
APERT@LISTSERV.AOL.COM
Subject:
Re: Midface advancement
Hi Liz,
It's difficult to give a
recommendation whether or not to do a T &
A; each
child is different.
Even though there are so many similarities and
procedures are the same,
each bone structure can be minutely
different.
From my personal view, I
was willing to give Rachel the most room
for
breathing. The tonsillectomy/adenoidectomy
appeared to help
initially (she
was two at the time), but
then she other other issues crop up which
affected
her breathing too.
Last summer/fall she had a decompression of her
spinal
cord at the level of C1
and base of the skull. Her breathing was
dramatically better after
that. Now hearing her, I can hear some
obstruction
and during REM sleep she
has moderately severe obstructive sleep
apnea. We
are now looking at the midface
advancement via distraction, possibly
this
summer.
I hope this helps you with
your decision-making. It is never easy
to make
these decisions. I
am still struggling with the midface
advancements via
distraction for the summer.
Faith helps us to make these difficult
decisions
and keep us going forward.
&n