To the Harmons,
We are so sorry to hear about B.J., may the Lord give you the strenghth
and faith that you need at this time. Our thoughts and prayers
are with
your family...
The Millers...
=========================================================================
Date: Sun, 1 Nov 1998
08:04:14 EST
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From: Jenngram@AOL.COM
Subject: Re: secundum atrial septal defect
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Mitral regurg is a fairly common condition and is not in and of itself
a big
problem...of course the severity of it can vary as can treatments.
Basically
its when blood is flowing through the heart (which is suppose to be
a one way
path w/ either oxygenated blood or nonoxygenated blood depending on
the route)
there is a point where a little bit of blood kinnda goes in hte wrong
dircetion. Sorta like GI reflux...only in the heart. Most of the time
it is
bengin and many people have it and its never been detected, or caused
problems. BUT, like anything else I imagine you would a) want
to know about
it abd b) have it followed...esp w/ surgeries.....a follow up is a
s simple as
the echo that had it diagnosed.
Of course some people do have severe cases and end up with valve replacement
surgery, but again...thats the more severe cases.....and when you go
for a Dr.
visit they can probablly tell you all the possibilities, and even show
you
some pictures of whats going on so you can better understand it.
Hope it helps some
Jenn(Tampa/St. Pete)
=========================================================================
Date: Sun, 1 Nov 1998
06:02:21 -1000
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From: "Joana H. Magno,
M.D." <magnomd@ALOHA.NET>
Subject: Re: secundum atrial septal defect
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The best advice is to go to your physician and discuss your concerns.
A
follow-up echocardiogram to re-evaluate Nick's heart should be
considered, and will help the doctors advise you further.
Nothing on
the original echocardiogram should have pushed you or your doctors
into
immediate action.
Judy Amerman wrote:
> when the cardiologist seen Nick this is the echocardiograpic diagnosis
that
> was given.
> Essentially normal echocardiogram with probable secundum atrial septal
> defect, Small, present and tricuspid valve appears somewhat thickened
with
> a mild amount of tricusped regurgitaion detected.
>
> The doctor told us at that time this happened frequently and said
it would
> more than likely clear itself up. He gave us no reason to really
concern
> ourselves.
>
> I would like all the feedback that I can possibly get on this.
I am
> calling Children's on Monday to get him scheduled for more tests.
Although
> the dr. did not seem concerned, after reviewing this after
this period of
> time, I am getting just a little nervous. I just want to make
sure
> everthing is okay.
>
> I got on the internet and was reading about this but I still do not
totally
> understand.
>
> All of a sudden, I feel like a bad parent for not following up on
this
> sooner.
=========================================================================
Date: Sun, 1 Nov 1998
10:55:26 -0800
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From: Robyn Johnston
<robyn@ORDATA.COM>
Subject: Re: genes
Mime-Version: 1.0
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Hi Denise, I will write you privatley. I have a few more specific
questions. :-) It is good that you will have the results
retested. You
need to be 100% confident with these kind of things.
Hugs, RObyn
At 04:07 PM 10/31/98 -0600, you wrote:
>Robyn,
>
> Yes, that was Dr. Michael
Cunningham. I am having the lab in
>Oregon test again to see if their results were wrong. I would
like to know
>who made the mistake. I am pretty sure Oregon is, but I want
proof.
>
>
>
Denise Graham
>
>
=========================================================================
Date: Sun, 1 Nov 1998
15:39:26 +0000
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Comments: Authenticated sender is <jgibson2@POP.erols.com>
From: jgibson2@EROLS.COM
Subject: Re: secundum atrial septal defect
In-Reply-To: <199811010553.XAA23222@matrix.uti.com>
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> when the cardiologist seen Nick this is the echocardiograpic diagnosis
that
> was given. Essentially normal echocardiogram with probable secundum
atrial
> septal defect, Small, present and tricuspid valve appears somewhat
thickened
> with a mild amount of tricusped regurgitaion detected.
Mild tricuspid regurgitation isn't a big deal.
Most people with
that don't know it. Small atrial septal defects (and ventricular
septal defects, for that matter) often close on their own -- that's
why the doctor told you not to worry about that. It isn't a bad
idea
to have the echocardiogram repeated - making sure that the
cardiologist who reads it sees lots of kids. The biggest
concern is
generally the slight possibility of bacterial endocarditis. This
is
something that can happen following dental work (even cleaning teeth)
if there are irregularities in the heart of any kind. Generally
prophylactic antibiotics are given to anyone with any sort of cardiac
lesion, no matter how small, when they see the dentist. So his
dentist should be aware of the diagnosis.
These days, that's as simple as transmitting the
result
electronically to a pediatric cardiologist. We used to have the
doc
come to our NICU in the middle of the night to read emergency echos
-- no more! Now the tech comes in, does the echo, transmits it
to
the doc who gives us a result in a fairly short time. It's
a big
improvement over the old system. In fact, you could have Nick's
echo
read by a cardiologist in another state if your local doc wanted a
consult - no big deal anymore.
Judy Gibson
Judy Gibson
jgibson2@erols.com
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Date: Sun, 1 Nov 1998
16:05:09 EST
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From: GSieb91515@AOL.COM
Subject: Re: Fw:
BIRTH ANNOUNCEMENT
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Congratulations Carol and family! What a short labor. How
wonderful for you.
Hope everyone is getting some rest. Hope to see pics of Aaron
sometime in the
future.
Brenda
=========================================================================
Date: Sun, 1 Nov 1998
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From: GSieb91515@AOL.COM
Subject: Re: working at home
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Christina-
I am a licensed interior designer by trade and have worked from home
when my
daughter was little (she is now 9). However, I went to work for
a firm after
much deliberation and have been there since. The past 2 years
with Jonathan's
therapies and doctors appt. and surgeries have made working a real
challenge.
I just can't do it all anymore. My daughter in a dance company
and her school
work is very demanding as well. The time as come for me to make
some changes.
This arrangement will not be easy because it is very hard to stay focused
when
you work from home. But I'm going to give it my best shot.
Have you ever considered doing medical transcriptions. I thought
if I
couldn't make enough with my design business I might take some med.
terminology classes and try to get into the transcribing business.
It would
be perfect for us. We could type at night and be with the kids
all day. What
is your background. Are there any areas that particularly interest
you?
Brenda
=========================================================================
Date: Sun, 1 Nov 1998
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From: GSieb91515@AOL.COM
Subject: Keeping Up
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Hello everyone-
There sure has been a lot of topics to stay tuned into lately.
Very
interesting stuff.
Karen--Sorry to hear that Billy is still having some problems and that
the
surgery was cancelled. We hope that he is doing better soon.
Your inspiring
message about your cousin brought tears to my eyes. Thanks.
Beth--We are deeply sorry for the loss of your brother and appreciate
you
sharing the poem with us. It was beautiful and I will include
it in a book
I'm doing for Jonathan when he is much older.
Stephanie (via) Dori--So glad to hear that Caroline did well and that
post op
is going smoothly.
Lynn--You certainly have been busy since we heard from you last.
Congratulations!!!! I will email you privately regarding the
play group that
Andrew is attending. Jonathan will be 2 in Dec. and is speech
delayed. He
doesn't say anything other than sounds except for Dada. Talk
to you later.
Would you please forward me a copy of the post from Don notifying us
of BJ's
passing. I accidentally deleted it before I could print it out
for Jonathan's
book. So glad to hear from you again.
Ann--Thanks for sharing with us. You had a really rough time.
Janine--Best of luck with Emily's surgery on the 4th. She will
remain in our
prayers.
Jenn--We will also have Jordan in our prayers for the 9th.
I have elected to have my tubes tied on the 6th. I am 41 and have
two
beautiful children that have blessed our home so I feel that it's time.
Has
anyone else been there and have anything to share?
Brenda
Houston
=========================================================================
Date: Sun, 1 Nov 1998
20:23:38 EST
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From: NephiRose@AOL.COM
Subject: Re: Keeping Up
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Brenda,
I've had my tubes tied and I've not regretted it for a second.
Four kids
later and the last one being Sarah V. with aperts, I decided it was
time so I
could devote my time with the ones that I have. The surgery itself
was a
piece of cake. Good luck.
Belinda Vicars
(Utah)
=========================================================================
Date: Mon, 2 Nov 1998
14:39:01 +1300
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From: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: Re: Mid face advancement
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Thanks Rose for sharing your experience, I have found it very reassuring to read. Also your tip about waiting a year after her menstrual cycle begins is very helpful, I was wondering how we were meant to decide "when she had stopped growing", which is all the guideline we have been given so far!
Recently we were advised that Amy’s Plastic Surgeon wants to do more surgery on her face. Having been originally told this would not be until she stopped growing it did send us into a spin - okay, it sent me (Ann) into a spin, Howard accepts everything!. It also sent me back to Campis’ paper entitled "Children with Apert Syndrome: Developmental and Psychologic Considerations". I haven’t looked at this since Amy was a pre-schooler and was interested to read the sections about "The School-Age Period" and "Adolescence".
Basically it says that most children with Apert cope okay during the
early school years, but when they reach adolescence there is a "...developmental
shift from the parent-child relationship to the peer group, as well as
the preoccupation with appearance and acceptance (which) converge to create
a particularly sensitive and vulnerable period for the adolescent with
Apert syndrome. Furthermore, their capacity for abstract and hypothetic
thought may give rise to anguish over their condition and its effect on
their life.
Following reconstructive surgery, adolescents with Apert syndrome have
reported many psychologic benefits. Particularly they seem to acquire
improved feelings of self-confidence and almost universally report lessened
self-consciousness and anticipation of social rejection. Thus, they
seem to feel less awkward and shy in social situations and actually seek
out more social interaction, as opposed to avoiding it. Interestingly,
many individuals report that they do not perceive others to treat them
differently, rather, they attribute their increased confidence and self-esteem
to internal changes in their self-concept and body image."
Amy turns 8 in February and I also found it interesting to read that "... school-age children (approximately 8 years old) undergo cognitive changes that foster healthy coping. They are capable of utilizing strategies to help them cope with painful medical procedures, and they can seek information to help understand their treatment and ameliorate their anxiety."
A friend of our who has experience with mental disorders advises that if it is going to help Amy's self image then we should go for it, because so many teenagers find it really tough during this time.
Regards
Ann
NZ
=========================================================================
Date: Mon, 2 Nov 1998
14:39:03 +1300
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From: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: Re: working at home
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>Have you ever considered doing medical transcriptions. I thought
if I
>couldn't make enough with my design business I might take some med.
>terminology classes and try to get into the transcribing business.
It would
>be perfect for us. We could type at night and be with the kids
all day.
After 10+ years as a pharmaceutical rep I went back to part-time secretarial work when I was pregnant with Amy and during her first year or so, going out to the office - my old company's medical department found me very useful because I knew the terminology and could pick up mistakes in the work I was given! After that I went onto transcribing for a research company, working from home. Following a particularly big transcribing rush-job I developed OOS which progressed to the stage where I couldn't work - fortunately I found a wonderful massage lady who got me back into the seat (at $50 an hour, which was $35 an hour more than I had been earning!) but I still have to be careful. Obviously I can't go back to secretarial work or transcribing.
I was a secretary (shorthand-typist) for 10+ years before I went on the road and never had any problem with RSI/OOS. It is the development of the computer and working nonstop from a transcribing machine that has created the problem. So a word of warning if you take on transcribing - take lots of breaks. I also believe the stress of Amy's operations affected my body and made me prone to this.
Good luck
Ann
NZ
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Date: Mon, 2 Nov 1998
17:34:01 -0500
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From: Richard Thornquist
<rlthorn@EARTHLINK.NET>
Subject: Re: working at home
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GSieb91515@AOL.COM wrote:
>
> Christina-
>
> I am a licensed interior designer by trade and have worked from home
when my
> daughter was little (she is now 9). However, I went to work
for a firm after
> much deliberation and have been there since. The past 2 years
with Jonathan's
> therapies and doctors appt. and surgeries have made working a real
challenge.
> I just can't do it all anymore. My daughter in a dance company
and her school
> work is very demanding as well. The time as come for me to
make some changes.
> This arrangement will not be easy because it is very hard to stay
focused when
> you work from home. But I'm going to give it my best shot.
>
> Have you ever considered doing medical transcriptions. I thought
if I
> couldn't make enough with my design business I might take some med.
> terminology classes and try to get into the transcribing business.
It would
> be perfect for us. We could type at night and be with the kids
all day. What
> is your background. Are there any areas that particularly interest
you?
>
> Brenda
Brenda,
I would love to know about the medical transcription jobs. All
the ones
I have called have had a fee to get started. That way they can
send you
information. I go to work Friday's and Saturday's right now,
but I
would like to stay home and just work at nights, typing on the computer.
Do you have any information you could give me. I have some medical
technology background and a whole lot of legal background. Please
let
me know of any information you have. Thank you.
Lynn Thornquist
rlthorn@earthlink.net
=========================================================================
Date: Tue, 3 Nov 1998
20:20:39 -0500
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From: Alice Lynch <goddess@CAPITAL.NET>
Subject: Re: Keeping Up
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Dear Brenda:
Hi! It's Alice from Lake George. I had it done after my second
child also.
Colin, my first was born with Apert Syndrom. Shannon, my
second, doesn't
have Apert Syndrom. Two was plenty and Colin was a handful.
I told the
doctor I wanted to have my tubes tied before I gave birth. I
reminded him
the day I had Shannon and I had to tell him I wouldn't leave the hospital
until it was done. He had forgotten. I finally got put
on the surgery
schedule a day later and I've never regretted it. I was very
sure it was
the right step for me.
Just check your heart very carefully. If your sure, then it's
a great
thing.
Good luck. Alice
----------
> From: GSieb91515@AOL.COM
> To: APERT@LISTSERV.AOL.COM
> Subject: Keeping Up
> Date: Sunday, November 01, 1998 4:54 PM
>
> Hello everyone-
>
> There sure has been a lot of topics to stay tuned into lately.
Very
> interesting stuff.
>
> Karen--Sorry to hear that Billy is still having some problems and
that
the
> surgery was cancelled. We hope that he is doing better soon.
Your
inspiring
> message about your cousin brought tears to my eyes. Thanks.
>
> Beth--We are deeply sorry for the loss of your brother and appreciate
you
> sharing the poem with us. It was beautiful and I will include
it in a
book
> I'm doing for Jonathan when he is much older.
>
> Stephanie (via) Dori--So glad to hear that Caroline did well and
that
post op
> is going smoothly.
>
> Lynn--You certainly have been busy since we heard from you last.
> Congratulations!!!! I will email you privately regarding the
play group
that
> Andrew is attending. Jonathan will be 2 in Dec. and is speech
delayed.
He
> doesn't say anything other than sounds except for Dada. Talk
to you
later.
> Would you please forward me a copy of the post from Don notifying
us of
BJ's
> passing. I accidentally deleted it before I could print it
out for
Jonathan's
> book. So glad to hear from you again.
>
> Ann--Thanks for sharing with us. You had a really rough time.
>
> Janine--Best of luck with Emily's surgery on the 4th. She will
remain in
our
> prayers.
> Jenn--We will also have Jordan in our prayers for the 9th.
>
> I have elected to have my tubes tied on the 6th. I am 41 and
have two
> beautiful children that have blessed our home so I feel that it's
time.
Has
> anyone else been there and have anything to share?
>
> Brenda
> Houston
=========================================================================
Date: Mon, 2 Nov 1998
22:12:17 -0800
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From: Robin MacDonald
<macdonal@GOLDEN.NET>
Subject: tubes tied
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Not sure how many dads actively read this material..but here goes.
Instead of women getting their "tubes tied" why don't the men go in
for
their procedure? I think it's faster and much easier from a recovery
perspective for men to have a vasectomy than a woman to have a
tubaligation?
Signed ...just wondering...and yes I had a vasectomy after our daughter
with aperts was born...and was likely going to have one anyways..it
was
easy and relatively painless...oh yea,,,I couldn't ride a bike that
weekend!
t
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Date: Tue, 3 Nov 1998
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From: Yonstein@AOL.COM
Subject: Emily's surgery
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First of all I want to thank everyone who sent me Dr. Upton's address
and
telephone number. We had a little misunderstanding with our new
hand surgeon
and weren't sure if the surgery was going to go as planned. Thankfully,
we
have cleared up the miscommunication between him and us (hopefully
for good)
and Emily is going in tomorrow morning, 11-4. Please say your
prayers for us
as she had an ear infection last week. Her pediatrician saw her
today and
says it's cleared up. Hopefully nothing will change between tonight
and
tomorrow morning.
Hope all is well with everyone.
Best wishes,
Janine
=========================================================================
Date: Thu, 3 Sep 1998
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From: Andrea Gartner
<agartner@PEGANET.NET>
Subject: Re: Emily's surgery
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Emily will be in my thoughts and prayers tonight and tomarrow.
I'm glad to
hear she recovered from her ear infection. I know those can be
real
annoyers.
I also wanna make a note that whenever an announcement is made about
anyone
having surgery, they are on my mind and prayers even though I may not
post
it.
I hope everyone had a Safe and Happy Halloween..
-Andrea
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Date: Tue, 3 Nov 1998
21:17:04 -0600
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From: "R. Fletcher"
<darwin1@CONCENTRIC.NET>
Subject: Re: Concerns/Various
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Hello to all,
First welcome to all the new families. My name is
Rachel. I am 25 with Apert's Syndrome. I went through 4 years of
braces and then my first facial surgery in 93. I went through 8 weeks of
my mouth being wired shut. They broke my jaw to align it right. And my
mid face advancement.
There are times for me when I don't think
I will make it to the next day of my life. When my mouth was wired
I didn't think I would be able to breath without a trachea, when my tonsils
were taken out the doctor hit a blood vessel and didn't think they would
get it stopped. I am not trying to scare anybody just telling them what
I have been through. Even when I was younger I was scared to die.
Now I believe we were put here for a reason. To show that different people
can get along. To expose people to different things. To make people think
more about certain things. I hope this is making sense, I hope I am using
the right words and not offending anyone. I am trying but don't know if
I will be successful or not, in getting my surgery history. For anyone
who is interested in it let me know and you are welcome to it.
I had skin graphs and I didn't even know they were there before and after.
BJ is always in my thoughts and prayers.
If anyone has any questions please feel free to email me.
Hope all is well.
Rachel
Darwin1@concentric.net
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Date: Tue, 3 Nov 1998
21:45:28 -0600
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From: Laurie Bailey
<jkb@ELPASO.NET>
Subject: Jacob's hand surgery
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Just a note to let all know Jacob is going in on Thursday, November
5 for
his index finger release. Just went to pediatrician today and all is
good.
Give you guys an update as soon as I can.
Laurie Bailey
jkb@elpaso.net
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Date: Tue, 3 Nov 1998
23:00:35 EST
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From: Liz Saylan <LSaylan@AOL.COM>
Subject: Re: Emily's surgery
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To Janine & Emily & FaMILY,
I will be thinking of you
both tomorrow and hope all goes well! I also hope
Emily has a speedy recovery from the surgery. My thoughts and prayers
are
always with you.
Liz
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Date: Thu, 3 Sep 1998
11:06:28 -0400
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From: Andrea Gartner
<agartner@PEGANET.NET>
Subject: All Children's Hospital Question
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Hi everyone,
Does anyone go to All Children's Hospital? How is it? I'm
curious because
there's a job description they have called a child life therapist.
From
what I understand they help children emotionally, psychosocially and
cognitively deal with their condition. That is exactly the job
I would
like to have. (of course I still need to finish college)
Has anyone had
experiance with them. Any info would be appreciated.
Thanks-
Andrea
agartner@peganet.com
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Date: Tue, 3 Nov 1998
23:36:00 -0500
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From: foster <foster@ICONTECH.COM>
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Good luck to Emily and to Jacob. May god bless you both. Hope you will
be
home soon .Our prayers will be with you both and your families. Hope
all is
well with all of our other families.
Fosters
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Date: Wed, 4 Nov 1998
08:19:12 EST
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From: Jenngram@AOL.COM
Subject: Re: All Children's Hospital
Question
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Andrea,
This is where Jordan has all of his surgeries, as well as his OT. Joe
also
rotated through Pediatric Surgery and by far it has been one of his
favorite
places to work. I think you'd really like it there, anyone would.
Jordan is too young to have any experiences w/ the Child Life department,
but
the recreation and educational rooms are very nice.
Let me know if I can be of any further help
Good Luck
Jenn(Tampa/St. Pete)
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Date: Wed, 4 Nov 1998
10:32:35 EST
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From: Jenngram@AOL.COM
Subject: Re: Emily's surgery
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Emily is in our thoughts today for a speedy recovery
Jenn(Tampa/St. Pete)
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From: Jenngram@AOL.COM
Subject: Re: Jacob's hand surgery
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Best wishes to Jacob for a speedy surgery and recovery
Jenn
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Date: Wed, 4 Nov 1998
10:39:20 -0500
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From: Don Sears <dsears@SCRS.STATE.SC.US>
Subject: Re: working at home
Comments: To: "hotflash49@hotmail.com" <hotflash49@hotmail.com>
MIME-Version: 1.0
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My sister does medical transcriptions out of her home, and has been
very
successful at it. I'm sure she could share some insights.
Her address
is hotflash49@hotmail.com and her name is Sandra Coleman.
> -----Original Message-----
> From: Richard Thornquist [SMTP:rlthorn@EARTHLINK.NET]
> Sent: Monday, November 02, 1998 5:34 PM
> To: APERT@LISTSERV.AOL.COM
> Subject: Re: working at home
>
> GSieb91515@AOL.COM wrote:
> >
> > Christina-
> >
> > I am a licensed interior designer by trade and have worked from
home
> when my
> > daughter was little (she is now 9). However, I went to work
for a
> firm after
> > much deliberation and have been there since. The past 2 years
with
> Jonathan's
> > therapies and doctors appt. and surgeries have made working a real
> challenge.
> > I just can't do it all anymore. My daughter in a dance company
and
> her school
> > work is very demanding as well. The time as come for me to
make
> some changes.
> > This arrangement will not be easy because it is very hard to stay
> focused when
> > you work from home. But I'm going to give it my best shot.
> >
> > Have you ever considered doing medical transcriptions. I
thought if
> I
> > couldn't make enough with my design business I might take some
med.
> > terminology classes and try to get into the transcribing business.
> It would
> > be perfect for us. We could type at night and be with the
kids all
> day. What
> > is your background. Are there any areas that particularly
interest
> you?
> >
> > Brenda
>
>
> Brenda,
>
> I would love to know about the medical transcription jobs.
All the
> ones
> I have called have had a fee to get started. That way they
can send
> you
> information. I go to work Friday's and Saturday's right now,
but I
> would like to stay home and just work at nights, typing on the
> computer.
> Do you have any information you could give me. I have some
medical
> technology background and a whole lot of legal background.
Please let
> me know of any information you have. Thank you.
>
> Lynn Thornquist
> rlthorn@earthlink.net
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From: ROBIN L HILL
<CARMENRAE@PRODIGY.NET>
Subject: Re: Jacob's hand surgery
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Good luck! Ditto on the casts/bandages message I sent Emily.
We will be
thinking of Jacob (and family) and praying for a speedy recovery.
The Hills
Newnan, GA
----------
> From: Laurie Bailey <jkb@ELPASO.NET>
> To: APERT@LISTSERV.AOL.COM
> Subject: Jacob's hand surgery
> Date: Tuesday, November 03, 1998 10:45 PM
>
> Just a note to let all know Jacob is going in on Thursday, November
5 for
> his index finger release. Just went to pediatrician today and all
is
good.
>
> Give you guys an update as soon as I can.
>
> Laurie Bailey
> jkb@elpaso.net
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From: ROBIN L HILL
<CARMENRAE@PRODIGY.NET>
Subject: Re: Emily's surgery
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Good luck! I hope Emily has better luck with her casts/bandages
than
Carmen did! We will be praying for a speedy and NON-EVENTFUL
recovery.
The Hills
Newnan, GA
----------
> From: Yonstein@AOL.COM
> To: APERT@LISTSERV.AOL.COM
> Subject: Emily's surgery
> Date: Tuesday, November 03, 1998 9:12 PM
>
> First of all I want to thank everyone who sent me Dr. Upton's address
and
> telephone number. We had a little misunderstanding with our
new hand
surgeon
> and weren't sure if the surgery was going to go as planned.
Thankfully,
we
> have cleared up the miscommunication between him and us (hopefully
for
good)
> and Emily is going in tomorrow morning, 11-4. Please say your
prayers
for us
> as she had an ear infection last week. Her pediatrician saw
her today
and
> says it's cleared up. Hopefully nothing will change between tonight
and
> tomorrow morning.
>
> Hope all is well with everyone.
>
> Best wishes,
>
> Janine
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Date: Wed, 4 Nov 1998
13:29:38 -0500
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From: ROBIN L HILL
<CARMENRAE@PRODIGY.NET>
Subject: Re: All Children's Hospital
Question
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Hi Andrea. We are not familiar with the hospital you are referring
to;
however, Egleston Children's Hospital (Atlanta, GA) has Child Life
Specialists. Carmen is a bit young for the discussion aspect;
however, we
love the services they offer regarding sitting with your child while
we get
a break; toys provided in the rooms as well as in the play rooms, etc.
Sounds like it would be a wonderful job for you. I know you would
do well
at helping children feel better about their situation, etc. Good
luck; you
are so encouraging. I hope Carmen grows up with the same enthusiasm
and
determination that you seem to have.
Robin Hill
----------
> From: Andrea Gartner <agartner@PEGANET.NET>
> To: APERT@LISTSERV.AOL.COM
> Subject: All Children's Hospital Question
> Date: Thursday, September 03, 1998 10:06 AM
>
> Hi everyone,
>
> Does anyone go to All Children's Hospital? How is it?
I'm curious
because
> there's a job description they have called a child life therapist.
From
> what I understand they help children emotionally, psychosocially
and
> cognitively deal with their condition. That is exactly the
job I would
> like to have. (of course I still need to finish college)
Has anyone had
> experiance with them. Any info would be appreciated.
>
> Thanks-
> Andrea
> agartner@peganet.com
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Date: Wed, 4 Nov 1998
15:21:57 -0500
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From: Ryan Bradley
<Bradleys_r@COMPUSERVE.COM>
Subject: Miscellaneous
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Hi Lynn;
We are the Bradley's and we live in Algonquin, IL. Michelle is
almost 8
years old and we too are expecting our second child due in May.
Ryan and I are not worried about our second child and have decided
that we
are not doing any testing. God has given us this child and He
will take
care of us. Michelle is very excited on being a Big Sister.
I hope you are feeling good, when are you due?
Take care,
Martha
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Date: Wed, 4 Nov 1998
15:21:56 -0500
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From: Ryan Bradley
<Bradleys_r@COMPUSERVE.COM>
Subject: Re: A BJ update
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Dear Harmons:
We are so sorry to hear about BJ, our prayers are with you. We
know that
he is in a better place and will be missed.
Sincerely,
Ryan & Martha Bradley
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Date: Wed, 4 Nov 1998
15:29:21 -0500
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From: rhartley@DZIS.COM
Subject: Hand questions/Update Rich Hartley
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Hi all.! (Rich & Karen Hartley. Andrew 6mo old)
Thank you for all the answers to my previous questions
about hands etc..Our Andrew was lucky enough to pass
his pre-op test and had his hands done on 10/23 Friday.
He had his casts taken off today. I'll see when I get home.
We only used the Codeine for pain for 3 days then just
Tylenol after that.
I'll answer the "How did we know he would only have 4-
fingers" question, tomorrow.
I had my first taste of how cruel children can be, at halloween
when a number of kids made comments about Andrews
appearance.
Good luck to the Yonstein's "Emily" and the Bailey's
"Jacob" and others on upcoming surgeries.
Your friends,
Rich & Karen in PA
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Date: Wed, 4 Nov 1998
16:39:47 -0500
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From: Richard Thornquist
<rlthorn@EARTHLINK.NET>
Subject: Re: Jacob's hand surgery
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Laurie Bailey wrote:
>
> Just a note to let all know Jacob is going in on Thursday, November
5 for
> his index finger release. Just went to pediatrician today and all
is good.
>
> Give you guys an update as soon as I can.
>
> Laurie Bailey
> jkb@elpaso.net
Good luck to Jacob with his surgery. I will be praying for a speedy
recovery.
Lynn Thornquist
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Date: Wed, 4 Nov 1998
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From: Nodrmat26@AOL.COM
Subject: Jacob & Emily
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Zoey's Mom here. Just wanted to say good luck on Jacob's surgery
and I hope
that Emily's surgery went well today.
Christina
San Antonio
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Date: Wed, 4 Nov 1998
20:50:18 +0000
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From: "J. G. Lindamood"
<chanan8@JUNO.COM>
Hello Everyone!
Guess who's back?
I has been a wild and crazy summer, one I was not prepared for when
I
departed from your company back in June. I'm wondering if I wasn't
experiencing a premonition and "knew" I would need all of me to deal
with
my life for the past few months? None the less, I'm back and
gaining
strength even as I write this.
For those whom I have not met, my name is Joanne. I am 33 and
I was
brought into this world with Apert's. I used to say I was born before
the
technology the children are experiencing today that allows them more
options in surgeries. However, I learned recently, there were
other
surgeries my parents could have agreed to, but didn't. I haven't
asked
enough questions as to what surgeries, but will let you know when I
do.
My thumbs are the only separated digit I have on my hands, the rest
are
fused. There is not much I cannot do. I live alone with
the company of
my Nanday Conure, Coal. He is my pride and happiness. For those
of you
who are familiar with us, Coal's vocabulary has increased over the
summer, to include "hello" "huh" "Hi" and he laughs (at me!) We have
the
best fun!
I have a pumpkin pie in the oven, my cure for a dreary day and I'm
looking forward to waking up with the lingering smell of pumpkin! This
needs to be short. I want to share my summer journey with
you all soon.
I just couldn't wait to say hello! I've missed you.
Hope all is well where you are.
Joanne
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Date: Wed, 4 Nov 1998
21:41:58 EST
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From: Liz Saylan <LSaylan@AOL.COM>
Subject: Re: memo from Liz
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It's been ahile since I sent
an email to everyone, for that I am sorry!
I hope both Jacob &
Emily are recovering from their surgeries, and that they
heal fast. I have been reading all the emails and have not had a chance
to
respond back. I am in the process of looking over my medical records
from 30
years ago, to see what I had done when I was smaller and how old I
was. I am
hoping to be able to give some insights as to the ages I was when I
had my jaw
reset and wired, craniofacial surgery etc.
I have been busy helping
my best friend who recently broke her ankle, had to
have surgery which went well, of course work at the same time. So I
am sorry
for not writing sooner and I still have not emailed responses back
to a number
of you, I will be getting back to you within the next couple days.
Hope everyone had a happy
halloween and is getting ready for Thanksgiving! I
will write again soo!
Liz
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Date: Wed, 4 Nov 1998
19:32:51 -00800
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From: Liz <LSAYLAN@AOL.COM>
Subject: A Long Overdue Note to All My
New Friends - from Liz
Guess what!! You have just received an animated greeting card from Liz
You can pick up your personal greeting by connecting to the following
WWW Address
<A HREF="http://www.bluemountain.com/cards/box3744s/ava5ymdpvrvniv.htm">http://www.bluemountain.com/cards/box3744s/ava5ymdpvrvniv.htm</A>
(Your greeting card will be available for the next 60 days)
This service is FREE! :) HAVE a good day and have fun!
____________________________________________________________
Accessing your card indicates your agreement with our Website Rules
posted at the bottom of the following Web location: (You're welcome
to send a
free card to someone at this location) http://www.bluemountain.com
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Date: Thu, 5 Nov 1998
08:20:08 EST
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JOANNE,
Welcome back...we have missed you, and your weather reports from up
north!!!!
Hope all is well, and do you think Coal would fly south and teach Jordan
a few
words??? He seems to enjoy caveman speak (ie.. grunting and pointing)
far too
much!!!
Gald you have returned!
Jenn(Tampa/St. Pete)
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Date: Thu, 5 Nov 1998
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Just a quick note on speech...
Sarah V. also uses "caveman speek" verbally...but it is
getting better.
Because we use sign language a lot in our home, would you believe that
Sarah
has picked up on it? Her vocabulary (this month) has skyrocketed
to beyond 20
words. She really exceeded our expectations. Let me tell you
how...
We were all gathered around the dinner table eating our supper. This
usually
is an uncomfortable time for me because Sarah usually spends the entire
dinner
time screeching and grunting and jabbing her hand in the air towards
something
she wants. We spend most of the time guessing...fun. Well
on this particular
day, instead of jabbing in the air and emitting that delightful screech...she
signed the word "milk". We were flabbergasted...why? Because
the word milk
involves making a fist repeatedly as if you are squeezing a cow's teat.
(you
have to bend some fingers) Of course she could not bend her digits,
but she
wiggled her thumb back and forth and bend all of her digits forward
at the
same time. We recognized it as milk. Obviously, she could
get the word
across if she wants to. (grin) A proud mama here.
I, however, agree with Joanne's upbeat attitude. Joanne says she
can do just
about anything. Ditto for our kids, if they set their mind to
it. Now if we
could just synchronize our agenda with our kids'........(smile).
Belinda Vicars
(Utah)
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Date: Thu, 5 Nov 1998
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From: baconsmith <bluenose@TELUSPLANET.NET>
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Dear friends. It has been a long while since I have posted to
the list.
I've kept you all in my thoughts daily as I read the posts. Especially,
I
was saddened about BJ and Lizzie Dixon.
One day last sping our family went on a little walk to a conservation
area
near our home. As I walked with them and enjoyed everything I
could see and
hear and smell out there in the spring air, I thought about BJ often.
We
took some pictures of the view from the top of the hill, and every
time I
see those pictures I think of BJ. Every time I think of walking
in that
park again, I think of BJ. Experiencing his struggle and courage
through
this list, through Marjorie's posts, touched me a great deal.
And so that
park and that hill, I think now will always be BJ's park and BJ's hill.
The
view from the top is spectacular, isn't it BJ?
Ceci also slips into my mind from time to time.
I thought of Ashleigh and Carol in Australia, too. And was happy
to hear
that all turned out well and welcome to Aaron.
I've thought of Zoey in and out of hospital, and Seth gave me a fright.
Thank goodness they are both okay, now.
Emily and Jordan, hope to see good news about you too soon.
Will post an update about EvaJessie soon. In a nutshell, she
is doing just
great.
Take good care all.
Welcome back Joanne.
Andrea, both our children's hospitals have Child Life staff.
The program
seems to be great. EvaJessie especially enjoys the playroom where
the staff
and volunteers spend time with the kids doing various crafts and games.
And
I appreciate the staff who can give me a wee break while we are in
hospital.
It means a great deal to me as a parent. What a wonderful
choice for work.
I hope it works out for you.
Pat in Calgary, Canada
email to: bluenose@telusplanet.net
IM: onlypeach
One doesn't discover new lands without consenting to lose sight of
the shore
for a very long time. Andre Gide
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Date: Thu, 5 Nov 1998
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From: Scott Pengelly
<scottp@EUGENE.COM>
Subject: Welcome back, Joanne: Scott
Comments: To: AOL User <MHTeach102@AOL.COM>
Mime-Version: 1.0
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Good morning:
Hope the punkin pie is delicious.
Good to read you here again.
Welcome back.
All the best,
Scott
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Date: Thu, 5 Nov 1998
14:18:32 -0500
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From: Richard Thornquist
<rlthorn@EARTHLINK.NET>
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Joanne,
It is wonderful to hear from you again!!!!! I'm sure I speak for
everyone when I say we missed your sense of humor and your strength.
Hope everything is going well with you. And you better be careful,
those Conure's can be real fiesty. But I'm sure you already know
that.
Hope to hear more from you real soon.
Lynn Thornquist
rlthorn@earthlink.net
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Date: Fri, 6 Nov 1998
13:40:11 +1300
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From: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: Re: Caveman Speek
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>Sarah V. also uses "caveman speek" verbally...but it is getting better.
A friend of ours with a very physical male child who has no syndrome used "caveman speek" for a long time, well beyond the time his sister learned to talk, and he has subsequently proven to be very intelligent. He is now nearly 6 and shows no sign of this slow start being a problem.
>I, however, agree with Joanne's upbeat attitude. Joanne says
she can do just
>about anything. Ditto for our kids, if they set their mind to
it. Now if we
>could just synchronize our agenda with our kids'........(smile).
AND the agenda of our/their therapists!!
Regards
Ann
NZ
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Date: Fri, 6 Nov 1998
13:40:13 +1300
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From: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: Self Image
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Amy told Howard the other night that noone would make a doll like her because her fingers and feet were different. Howard (wonderful man!) just pointed out that Barbie's toes were fused together as well.
What else needs to be said?!
Regards
Ann
NZ
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Date: Thu, 5 Nov 1998
20:17:59 -0500
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From: Richard Thornquist
<rlthorn@EARTHLINK.NET>
Subject: Re: Self Image
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Howard & Ann wrote:
>
> Amy told Howard the other night that noone would make a doll like
her because her fingers and feet were different. Howard (wonderful
man!) just pointed out that Barbie's toes were fused together as well.
>
> What else needs to be said?!
>
> Regards
> Ann
> NZ
Ann,
Please tell Howard that he is a very observant man. I completely
applaud his response to Amy's statement. It is funny though....people
say we live in a society where we are constantly being compared to
"Barbie" (who has been said to be perfect, at least that's what you
hear
on talk shows). And after all this time Barbie has an imperfection.
I
ofcourse think that there is no such thing as perfect in one specific
way, we are all perfect in our own way. Don't we all think that
our
kids are perfect?
I hope you all understood what I was trying to say. Sometimes
I have a
hard time expressing my thoughts.
Lynn
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Date: Thu, 5 Nov 1998
20:55:10 EST
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From: GSieb91515@AOL.COM
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Best wishes to Emily and Jacob. Wishing them a speedy recovery.
Joanne-Welcome back! We missed you and your wisdom. Can't
wait to hear all
about your summer.
Christina-I sent your response to the listserv by accident. But glad
to hear
Don's response. Maybe his sister can give us (Lynn too) some
leads in that
direction.
Belinda--How exciting! Jonathan throws his arms up to his head
whenever he is
finished eating but that's the only signs we've encountered to date,
other
than the basic caveman stuff (pointing, grunting, etc.)
Ann--I loved the Barbie diagnosis. How clever of Howard to point
this out. I
will definately remember this one down the road.
Well I'm off to bed before surgery tomorrow since I can't eat or drink
anything. Surgery isn't until 11:30. I will be starving
by then not to
mention nauscious (sp). I'm getting a small taste of what our
children go
through all the time. It really is scary stuff.
Christine--How are you doing? Hope things are looking up since
your break
out.
Best wishes to all,
Brenda
Houston
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Date: Thu, 5 Nov 1998
21:07:52 -0500
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From: foster <foster@ICONTECH.COM>
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Joanne- Its nice to have you back with us.
Hope Emily and Jacob are on their way to a speedy recovery.
Billy's sleep study shows no apnea so we don't have to do anything with
his
adenoids after all. He has shaken off his cold and is eating like a
horse
again(or a least a big pony).This will also mean no more talk about
a trache
at least for now. He will be having a CT scan in Jan. and we are praying
that there will be no need for a shunt. It is so great to see
him being his
old self again. He has also been able to catch up on his shots.
Our dog Casey has given birth to 10 beautiful puppies and the kids are
crazy
over them. One good thing is we have homes waiting for each and everyone
of
them. But Casey will be getting fixed as soon as the vet gives the
ok. She
is a wonderful mother and deserves a brake .
Hope today finds everyone doing well. Also thinking about Jacob and
Emily
and praying for the best for both of them.
One question.. Has anyone else had trouble finding hats for their children?
Billy's ears are low set and he doesn't do very well with hoods. I
have had
a hard time finding a hat that will fit his head well and cover both
of his
ears at the same time. Anyone had this trouble?
Karen(PA)
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Date: Thu, 5 Nov 1998
22:00:42 +0000
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From: "J. G. Lindamood"
<chanan8@JUNO.COM>
Hello all!
I just put Feisty One :-) to bed and before I crash myself, I thought
I
would give you a snap shot of my summer. Some of you know what
all
happened, as I leaned on a few shoulders during this event or that.
I
will try not to bore you to tears.
When my family and I took a count, we came up with eight major events
in
my life this year. One was planned, my brother's wedding.
The other
seven were surprises. My Grandmother's death started it all.
Even
though she was frail and declining fast, her passing still took a lot
out
of me. Early this summer Clarence, my beloved Cockatiel, suffered
a
heart attack and few on to heaven. Tears still trickle every
now and
then about that. Coal seems to know when to fill in the gap though.
I
quit a >very low paying< job when I found a great opportunity to
work as
an Activity Coordinator in a retirement community. I am happy
to let you
know I found another, >even better< opportunity to work in a hospital
doing the same thing. I called the hospital to talk to the Therapeutic
Recreation Coordinator, a suggestion from Marianne, about the educational
requirements for the job and found out their coordinator was leaving.
With in a week I had promises of a new job. Meanwhile, my dad
was
involved in a serious car accident that could have taken his life.
Thankfully, all he suffered was a few serious bumps and bruises, and
mental anguish over the loss of the truck (why?) During that same week,
I
was sick as all get out and didn't know why. I went to the hospital
where I am now working and they couldn't help me. A week later I was
in
another hospital having my gall bladder taken out. Surgery #12
for me!
If that wasn't enough, during the preliminary tests, the doctors found
a
"spot" on my lung that looked suspicious. Three series of x-rays
have
proven the suspicions wrong and the spot is decreasing in size.
I go
back next week for another, hopefully the last, CT Scan. I'm
believing
the thing is completely gone! My step brother announced his engagement
two months before the wedding, sending this family in to a dizzying
spin!
And then, most recently, my (biological) brother was married. Whew!
Going back to my new job, I could not be happier. My peers think
I am
the next best thing to sliced bread, in comparison to the coordinators
I
am following. I love what I am doing and it shows. There
is more money
coming in, the benefits are great, including an opportunity to get
the
education I was seeking in the first place. And the best part...
I am
helping people get BETTER. It's a bittersweet moment when patients
with
whom I have developed a relationship leave to go home. I told
my family
the one thing I really like about this job, I hate. I took my
pumpkin
pie to work today just to say "thanks" to my peers. I've only
been there
for two months. But I already feel like family.
Well, that about sums it all up. I wears me out to remember everything
again. Through out almost everything that happened, something
good came
about. My Grandmother's passing taught me to live a simpler life.
Materialistically, all she had at the end was a borrowed bed and the
clothes on her back. My health problems drove me to begin working out
three times a week. I have more muscles (sore) than I ever imagined!
:-)
One more thing.. I went to a dermatologist, (taking advantage of the
great health insurance) to see about my face. It's red, oily
and I have
a lot of acne. I have Rosacea, a common problem. I am putting
a gel on
my face nightly. Go back in a few weeks to check in. I
thought I had
something unique to those with Apert's. Come to find out, my
dad has it
too!! Hum.
Hope all is well where you are!
joanne, in COLD, Northern U.S.
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Date: Thu, 5 Nov 1998
22:40:22 EST
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From: Liz Saylan <LSaylan@AOL.COM>
Subject: Re: LSAYLAN@AOL.COM
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Hey !
I'm sorry it has taken me
soo long to write back. I am curious to know what
mid-face advancement is, I had craniofacial surgery done at 9 years
of age. I
also had reset and realigned. My jaw was wired for 6 weeks, when it
was over I
had lost a tremendous amount of weight from the liquid diet I was on.
I had
and a learning disability in school which started in elementary school
in the
5th grade. I also went through speech therapy to help correct tongue
thrusting.
I was put in a handicap
class from 1 through 3rd grade, my mother tried
unsuccess-fully not to have me put in the class, we later learned that
the
school system is funded for these special classes and needed to fill
it's
quota to justify the funds. So had my mother been able to fight the
school
system, we feel I would have managed just fine in the normal class
room. When
my mother and I moved away to a different school system my handicap
teacher
did what she could to get me in a normal class, the only down fall
was that I
had to be held back in order to do so.
Looking back I can't help
but be a little thankful that I had to be held
back, but at the same time I wish that I could have advanced to the
next grade
like the other kids my age. I took learning disability classes in elementary
through to highschool. When I was in the 10th grade I had over come
my
learning disability and finally able to complete highschool on my own
with out
help from a special class. I would suggest that you fight the system
if you
feel your daughter is capable of advancing at a normal pace.
One of my many challenges
in school was learning how to deal with the other
children who did not understand why I was different, but I soon learned
early
on how to ignore the poor judgements of others. I realize she is only
5, and
has a long road ahead of her, I will always be glad to share with you
and her
what it was like for me growing up. In the meantime I hope I have been
of some
help to you, look forward to continuing a lasting friendship.
Liz
=========================================================================
Date: Fri, 6 Nov 1998
21:56:30 +1300
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From: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: Re: tubes tied
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At 10:12 PM 2/11/98 -0800, you wrote:
>Not sure how many dads actively read this material..but here goes.
>Instead of women getting their "tubes tied" why don't the men go in
for
>their procedure? I think it's faster and much easier from a recovery
>perspective for men to have a vasectomy than a woman to have a
>tubaligation?
Some Dads do although I have to say that a lot of messages are very much a womans perspective.
The above may well be generally true but mine wasn't much fun. I passed out on the couch (I think it was supposed to be a local anaesthetic) and woke up when it was all over. Quite pleased about that I guess as I didn't really want to watch. Not that I have a weak stomach. (I once made haggis in the Sahara Desert with the bits of a Muslim ritual slaughtered goat and my swiss army knife. Not a pretty sight at all but good haggis). Ann drove me home but while sitting in the living room in an easy chair I passed out again giving her a big fright. A few weeks later I had to go back to get some stitches out (they were supposed to have dissolved but didn't). The pain was the most exquisite I have ever experienced.
Not that I want to put anyone off! I could have ridden a bike the next day though.
Farewell , Howard
>
>Signed ...just wondering...and yes I had a vasectomy after our daughter
>with aperts was born...and was likely going to have one anyways..it
was
>easy and relatively painless...oh yea,,,I couldn't ride a bike that
>weekend!
>t
>
>
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Date: Fri, 6 Nov 1998
07:39:34 EST
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From: Jenngram@AOL.COM
Subject: Re: Self Image
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Our plastic surgeon...a wonderful, wonderful man, often points out to
some of
the older children, that have only have 4 digits(due to various different
syndromes) that Mickey Mouse only has 4 digits as well. Now, I am sure
this
may not be as helpful to a pre-teen and /or teen, but for the little
ones it
sure helps!
Jordan goes in Monday to release the left index finger. He is finally
walking,
rather running (its much easier to destroy things the faster you get
there),
so I am a bit bummed that he will tossed abck on his behind for a couple
of
weeks!!! Oh Well, what can you do!!!
Hope everyone is recovering nicely
Jenn(Tampa/St. Pete)
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Date: Fri, 6 Nov 1998
10:57:18 EST
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From: Yonstein@AOL.COM
Subject: Re: Emily update
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Hello all:
Thank you all for you well-wishes to Emily. She had her surgery
and is doing
fine. She is sitting here on my lap with an extra couple of pounds
due to a
cast that goes up to her shoulder. We had some great news, though.
I think I
told you all that this doctor we used does a different procedure.
He
separates the bones at the tips first and skin grafts and then will
go and do
individual separations . He told us that he "WILL" be able to
get all five
fingers on her left hand, which is a little bit worse than her right
hand.
That was great news. She is a little cranky, which is very unusual
for her,
but it should pass in a couple of days.
Hope Jacob is recovering as nicely, also.
Glad to hear Billy is finally feeling better.
Good luck to Jordan on Monday, and anyone else who is having surgery
or is
under the weather.
Brenda, hope you are doing ok after your surgery. Don't want to
forget about
the parents here either.
Glad to have you back Joanne. Can you e-mail me some of your pie?
Best wishes to all,
Janine Krebs
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Date: Fri, 6 Nov 1998
11:53:28 EST
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From: Jenngram@AOL.COM
Subject: Re: Emily update
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Glad to hear that Emily will get all of her little fingers...we still
don't
have that guarantee, but we are hopeful...so far so good, keeping our
fingers
crossed (ha!!)
Brenda, good luck to you as well...that whole starvation prior to surgery
is
the worst....mainly b/c when my stress level goes up, so does my intake
of
food!!!
Jenn(Tampa/St. Pete)
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Date: Fri, 6 Nov 1998
14:39:34 -0500
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From: Richard Thornquist
<rlthorn@EARTHLINK.NET>
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foster wrote:
> One question.. Has anyone else had trouble finding hats for their
children?
> Billy's ears are low set and he doesn't do very well with hoods.
I have had
> a hard time finding a hat that will fit his head well and cover both
of his
> ears at the same time. Anyone had this trouble?
>
> Karen(PA)
Karen,
Have you tried those flap hats? Andrew had one last year that
snapped
under his chin. It was great because it kept his head warm and
the
little flaps came down and covered his ears. And I like the fact
that
it snapped instead of tied. I think I purchased mine at Walmart.
Lynn
=========================================================================
Date: Fri, 6 Nov 1998
14:33:06 -0800
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From: Bonnie Zimmerman
<bonnie@FRANCISCAN.COM>
Organization: Franciscan Estates
Subject: 11/4 Newborn diagnosed with
apert - help
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We are family in shock and very scared. My stepdaughter who is
20 years
old, a single mother and living with us delivered a son on Wednesday
with what appears to be a very serious case of apert.
I read through the website and printed it out to bring to her at the
hopsital tonight. I'm not sure she is capable of handling this
situation.
They are planning to do the skull surgery in about a week. We
will
bringing the boy home on Monday. Can you offer any advice on
what to
do, or tips on care?
Are there any support groups or help in the Northern California area?
We are in the Napa Valley.
Thank you.
Bonnie Zimmermann
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Date: Fri, 6 Nov 1998
18:39:41 EST
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From: Nodrmat26@AOL.COM
Subject: Re: Self Image
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In a message dated 11/5/98 6:40:26 PM Central Standard Time,
howrdnan@IHUG.CO.NZ writes:
<< Amy told Howard the other night that noone would make a doll
like her
because her fingers and feet were different. Howard (wonderful
man!) just
pointed out that Barbie's toes were fused together as well. >>
Zoey's Mom here, just wanted to point out how many shows and cartoons
have
characters in them with 3 or 4 fingers. Has anyone seen "Lost
In Space"? The
cute little alien in the movie had cute little hands with 3 or 4 fingers
and I
told Zoey how beautful their hands were. She clapped and smiled.
Barbie's
fingers are pretty much fused too, aren't they? (smile)
Christina
San Antonio
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Date: Fri, 6 Nov 1998
18:41:48 -0500
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From: ROBIN L HILL
<CARMENRAE@PRODIGY.NET>
Subject: Presenting...Carmen Rae Hill
MIME-Version: 1.0
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This is a multi-part message in MIME format.
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We got Carmen's pictures done at Walmart today and they gave us a disk
with
all the poses on it. Needless to say, I am sooooooo excited.
Just wanted
to share our little cutie with all of you.
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Date: Fri, 6 Nov 1998
19:09:24 EST
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From: Nodrmat26@AOL.COM
Subject: Re: 11/4 Newborn diagnosed with
apert - help
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Your situation sounds very familiar to me. I was a single parent
and living
with my parents when I had my daugther, Zoey, and her birth was quite
a shock
and sent me into a temporary depression. Your daughter will need
ALOT of
support. I didn't hear you mention the baby coming home with
a trach, so
that's something very positive. The biggest problem I had when
I brought Zoey
home was her trach falling out or getting plugged and if I could respond
in
time and not let her die. Trach aside, I could have handled the
situation
much better. There's alot of information on Teeter's Page, if
you haven't
seen that yet. it's at www.apert.org. I don't know what
else to say except
that your daughter will need alot of support and once the initial shock
and
being a little scared is over, there will be joy. Except for
my Zoey not
talking yet, she's a completely normal baby to me and everyone who
knows
her...and she brings us alot of joy and happiness.
I'll be praying for you and your family.
Christina
San Antonio
Nodrmat26@aol.com
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Date: Fri, 6 Nov 1998
19:11:46 EST
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From: Nodrmat26@AOL.COM
Subject: HOORAY! JOANNE'S BACK!
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Zoey's Mom, Christina here and I just wanted to welcome you back Joanne.
You
took a break shortly after I signed on the listserv, so I didn't know
you too
well, but I do remember your sense of humor and how you made me smile
and make
me feel that Zoey's future is so very bright. I'm glad you're
here.
Take care!
Christina
San Antonio
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Date: Fri, 6 Nov 1998
20:19:43 -0500
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From: ROBIN L HILL
<CARMENRAE@PRODIGY.NET>
Subject: Re: Presenting...Carmen Rae
Hill
MIME-Version: 1.0
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Well, it appears I did not do something correct. Can anyone help
me attach
the file in EMAIL? I have never done this and I must not have
guessed
correctly.
Robin
----------
> From: ROBIN L HILL <CARMENRAE@PRODIGY.NET>
> To: APERT@LISTSERV.AOL.COM
> Subject: Presenting...Carmen Rae Hill
> Date: Friday, November 06, 1998 6:41 PM
>
> We got Carmen's pictures done at Walmart today and they gave us a
disk
with
> all the poses on it. Needless to say, I am sooooooo excited.
Just
wanted
> to share our little cutie with all of you.
>
> Robin Hill (and Carmen Rae)
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Date: Fri, 6 Nov 1998
20:24:14 -0500
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From: baconsmith <bluenose@TELUSPLANET.NET>
Subject: Re: Presenting...Carmen Rae
Hill
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Robin, can you send it jpg? I can open those. The
exe file gave my system
heartburn.
pat in calgary
>Well, it appears I did not do something correct. Can anyone help
me attach
p>the file in EMAIL? I have never done this and I must not have
guessed
>acorrectly.
>
>tRobin
>
>----------
>> From: ROBIN L HILL <CARMENRAE@PRODIGY.NET>
>> To: APERT@LISTSERV.AOL.COM
>> Subject: Presenting...Carmen Rae Hill
>> Date: Friday, November 06, 1998 6:41 PM
>>
>> We got Carmen's pictures done at Walmart today and they gave us
a disk
>with
>> all the poses on it. Needless to say, I am sooooooo excited.
Just
>wanted
>> to share our little cutie with all of you.
>>
>> Robin Hill (and Carmen Rae)
>
email to: bluenose@telusplanet.net
IM: onlypeach
One doesn't discover new lands without consenting to lose sight of
the shore
for a very long time. Andre Gide
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Date: Fri, 6 Nov 1998
20:36:06 -0500
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From: ROBIN L HILL
<CARMENRAE@PRODIGY.NET>
Subject: Re: Presenting...Carmen Rae
Hill
MIME-Version: 1.0
Content-Type: text/plain; charset=ISO-8859-1
Content-Transfer-Encoding: 7bit
Hi Pat!
Apparently I don't know what I am doing. Can you tell me how to
put it in
jpg?????????????
Robin
----------
> From: baconsmith <bluenose@TELUSPLANET.NET>
> To: APERT@LISTSERV.AOL.COM
> Subject: Re: Presenting...Carmen Rae Hill
> Date: Friday, November 06, 1998 8:24 PM
>
> Robin, can you send it jpg? I can open those. The
exe file gave my
system
> heartburn.
>
> pat in calgary
>
>
>
>
> >Well, it appears I did not do something correct. Can anyone
help me
attach
> p>the file in EMAIL? I have never done this and I must not
have guessed
> >acorrectly.
> >
> >tRobin
> >
> >----------
> >> From: ROBIN L HILL <CARMENRAE@PRODIGY.NET>
> >> To: APERT@LISTSERV.AOL.COM
> >> Subject: Presenting...Carmen Rae Hill
> >> Date: Friday, November 06, 1998 6:41 PM
> >>
> >> We got Carmen's pictures done at Walmart today and they gave us
a disk
> >with
> >> all the poses on it. Needless to say, I am sooooooo excited.
Just
> >wanted
> >> to share our little cutie with all of you.
> >>
> >> Robin Hill (and Carmen Rae)
> >
> email to: bluenose@telusplanet.net
> IM: onlypeach
> One doesn't discover new lands without consenting to lose sight of
the
shore
> for a very long time. Andre Gide
=========================================================================
Date: Fri, 6 Nov 1998
20:37:48 -0500
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From: ROBIN L HILL
<CARMENRAE@PRODIGY.NET>
Subject: Re: Presenting...Carmen Rae
Hill
MIME-Version: 1.0
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Hi Pat. Apparently I don't know what I am doing. Can you
tell me how to
put it in jpg????? I have a 3.5 disk with the pictures on it
and I put it
on my c drive, but I must not have done it correctly.
??????
Robin
----------
> From: baconsmith <bluenose@TELUSPLANET.NET>
> To: APERT@LISTSERV.AOL.COM
> Subject: Re: Presenting...Carmen Rae Hill
> Date: Friday, November 06, 1998 8:24 PM
>
> Robin, can you send it jpg? I can open those. The
exe file gave my
system
> heartburn.
>
> pat in calgary
>
>
>
>
> >Well, it appears I did not do something correct. Can anyone
help me
attach
> p>the file in EMAIL? I have never done this and I must not
have guessed
> >acorrectly.
> >
> >tRobin
> >
> >----------
> >> From: ROBIN L HILL <CARMENRAE@PRODIGY.NET>
> >> To: APERT@LISTSERV.AOL.COM
> >> Subject: Presenting...Carmen Rae Hill
> >> Date: Friday, November 06, 1998 6:41 PM
> >>
> >> We got Carmen's pictures done at Walmart today and they gave us
a disk
> >with
> >> all the poses on it. Needless to say, I am sooooooo excited.
Just
> >wanted
> >> to share our little cutie with all of you.
> >>
> >> Robin Hill (and Carmen Rae)
> >
> email to: bluenose@telusplanet.net
> IM: onlypeach
> One doesn't discover new lands without consenting to lose sight of
the
shore
> for a very long time. Andre Gide
=========================================================================
Date: Fri, 6 Nov 1998
20:48:37 -0500
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From: ROBIN L HILL
<CARMENRAE@PRODIGY.NET>
Subject: Carmen Rae...Take 2
MIME-Version: 1.0
Content-Type: multipart/mixed; boundary="----=_NextPart_000_01BE09C6.D3F3D6E0"
Content-Transfer-Encoding: 7bit
This is a multi-part message in MIME format.
------=_NextPart_000_01BE09C6.D3F3D6E0
Content-Type: text/plain; charset=ISO-8859-1
Content-Transfer-Encoding: 7bit
Sorry for sending so many messages. I guess it is obvious that
I have
never attached a file to EMAIL before. Can you open these??????????
Robin
=========================================================================
Date: Fri, 6 Nov 1998
21:57:38 -0500
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From: baconsmith <bluenose@TELUSPLANET.NET>
Subject: Re: Presenting...Carmen Rae
Hill
Mime-Version: 1.0
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Hi Robin, I have no idea what I'm talking about. I only
know that is what
I usually get and they most always convert okay.
And yours did too. Carmen Rae is adorable! The pictures
are excellent.
You must be so pleased. Thanks.
EvaJessie loved seeing them. She kept saying, aw she's dorable.
Pat
email to: bluenose@telusplanet.net
IM: onlypeach
One doesn't discover new lands without consenting to lose sight of
the shore
for a very long time. Andre Gide
=========================================================================
Date: Fri, 6 Nov 1998
21:08:57 -0800
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From: "Brent E. Young"
<beyoung@IX.NETCOM.COM>
Subject: Re: Presenting...Carmen Rae
Hill
MIME-Version: 1.0
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ROBIN L HILL wrote:
> We got Carmen's pictures done at Walmart today and they gave us a
disk
> with
> all the poses on it. Needless to say, I am sooooooo excited.
Just
> wanted
> to share our little cutie with all of you.
>
> Robin Hill (and Carmen Rae)
>
>
Hi9 everyone,
It has been a long time since I have written anything. I loved Carmen
Rae's pictures. You're right she is a cutie.
I hope all the surgeries have been successful and I wish for a speedy
recovery to anyone who has had a surgery recently.
Congratulations Carol and family on the birth of your little boy. I
am
expecting a baby brother myself in two weeks and I can't wait.
Talk to You again soon.
Kelly
>
> -------------------------------------------------------------------------------------------------------------
>
>
>
>
>
=========================================================================
Date: Sat, 7 Nov 1998
08:37:59 -0500
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From: Jack and Raquel
<jara1@BELLSOUTH.NET>
Subject: Nicole
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Hello everyone,
Sorry that we haven't been in tune lately but we've had a lot of things
going on around here that frankly I have not had much time to even
turn
on my computer.
Just want to let everyone know that Nicole just had her first hand
surgery on Thursday (the releasing of her index and pinkie) along with
eye muscle surgery, cleaning of the ears and she even had her ears
pierced. She had the works and she looks adorable with her little
earrings. She has a nice set of casts all the way up to her shoulders
folded at the elbows. Her doctor says she hopes Nicki doesn't
slip out
of them so far so good. I hope she keeps them on. We slipped
a pair of
socks over the casts to keep them as clean as possible, thank goodness
we did because first day home from the hospital yesterday she already
had a chunk of brownie on the bottom of one of the socks that her older
sister gave her, of course she can't pick up the piece of brownie so
instead she smashed it against her walkers tray. Oh well it'll
be a
long 10 days with those casts only to look forward to even longer days
with splints. But I know most of you know what I'm talking about.
Well
I'll let you all go for now. I hope all is well...
Raquel Miller.....
=========================================================================
Date: Sat, 7 Nov 1998
09:17:57 -0500
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From: ROBIN L HILL
<CARMENRAE@PRODIGY.NET>
Subject: Re: Nicole
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Glad to hear Nicole is doing well. Good luck with the casts; as
you
probably already know they were a nightmare for us. We'll be
thinking of
you the next 10 days!!!!!
Robin Hill
----------
> From: Jack and Raquel <jara1@BELLSOUTH.NET>
> To: APERT@LISTSERV.AOL.COM
> Subject: Nicole
> Date: Saturday, November 07, 1998 8:37 AM
>
> Hello everyone,
>
> Sorry that we haven't been in tune lately but we've had a lot of
things
> going on around here that frankly I have not had much time to even
turn
> on my computer.
> Just want to let everyone know that Nicole just had her first hand
> surgery on Thursday (the releasing of her index and pinkie) along
with
> eye muscle surgery, cleaning of the ears and she even had her ears
> pierced. She had the works and she looks adorable with her
little
> earrings. She has a nice set of casts all the way up to her
shoulders
> folded at the elbows. Her doctor says she hopes Nicki doesn't
slip out
> of them so far so good. I hope she keeps them on. We
slipped a pair of
> socks over the casts to keep them as clean as possible, thank goodness
> we did because first day home from the hospital yesterday she already
> had a chunk of brownie on the bottom of one of the socks that her
older
> sister gave her, of course she can't pick up the piece of brownie
so
> instead she smashed it against her walkers tray. Oh well it'll
be a
> long 10 days with those casts only to look forward to even longer
days
> with splints. But I know most of you know what I'm talking
about. Well
> I'll let you all go for now. I hope all is well...
>
> Raquel Miller.....
=========================================================================
Date: Sat, 7 Nov 1998
09:48:58 -0600
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From: "Allison's :
GO USA, Inc" <gousa@KC.NET>
Subject: New Baby in Shawn Allison's
Family
In-Reply-To: <199811071415.JAA33758@pimout3-int.prodigy.net>
Mime-Version: 1.0
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Hi All!
Shawn Allison is a big brother as of yesterday.
He has a new little brother born to his mom and dad yesterday, 11-6-98.
He
weighed 9 lb 11oz., and was 21 inches long. A very big and healthy
boy.
We are naming him Brandon Scott.
Since Laura had a c-section, I am going back to the hospital to take
care
of mom, and the baby.
Bye for now,
Mike Allison and family
=========================================================================
Date: Sat, 7 Nov 1998
13:17:50 EST
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From: Liz Saylan <LSaylan@AOL.COM>
Subject: Re: New Baby in Shawn Allison's
Family
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To The Allison Family Congratulations!!!
THat is great news and now
Shawn is going to be a big brother wow! Hope all
is well with Mom and the new baby Brandon.
Liz
=========================================================================
Date: Sat, 7 Nov 1998
13:21:59 EST
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From: Liz Saylan <LSaylan@AOL.COM>
Subject: Re: Presenting...Carmen Rae
Hill
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Robin can you re send me CarmenRae's picture for some reason I was not
able to
see it but I was able to down load. So email me at LSAYLAN@AOL. COM
I hope I
can be able to see her pictures or figure out why I couldn't here on
the
listserv.
Hope all is Well!
LIz
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Date: Sat, 7 Nov 1998
13:31:05 -0500
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From: Richard Thornquist
<rlthorn@EARTHLINK.NET>
Subject: Re: New Baby in Shawn Allison's
Family
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Allison's : GO USA, Inc wrote:
>
> Hi All!
>
> Shawn Allison is a big brother as of yesterday.
>
> He has a new little brother born to his mom and dad yesterday, 11-6-98.
He
> weighed 9 lb 11oz., and was 21 inches long. A very big and
healthy boy.
> We are naming him Brandon Scott.
>
> Since Laura had a c-section, I am going back to the hospital to take
care
> of mom, and the baby.
>
> Bye for now,
>
> Mike Allison and family
CONGRATULATIONS TO THE ALLISON FAMILY!!!!!!! I'm sure that Shawn
is
thrilled with a new little brother to play with.
Lynn Thornquist
=========================================================================
Date: Sat, 7 Nov 1998
16:14:36 +0000
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Comments: Authenticated sender is <jgibson2@POP.erols.com>
From: jgibson2@EROLS.COM
In-Reply-To: <36435076.2C4D@earthlink.net>
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> Have you tried those flap hats? Andrew had one last year that
snapped
> under his chin. It was great because it kept his head warm
and the
> little flaps came down and covered his ears. And I like the
fact that
> it snapped instead of tied. I think I purchased mine at Walmart.
Land's End has another style of hat that is
great for any little
kid. I got one because my 3 year old rips hats off and just freezes.
It's more like a hood than a hat -- goes on over the head and
is
hard for him to take off. It's a nice warm polarfleece and covers
everything from the neck up except his face. I can't remember
what
they call it, but you can find it on their web site if you aren't
already on their mailing list.
Judy
Judy Gibson
jgibson2@erols.com
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Date: Sat, 7 Nov 1998
18:44:34 EST
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From: Liz Saylan <LSaylan@AOL.COM>
Subject: Re: HELP!
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This is Liz,
I am having difficulties
getting Carmens picture to show up on my screen I am
able to down load but unable to see anything if anyone can help me
please
email me at LSAYLAN@AOL.COM Thanks
Liz
=========================================================================
Date: Sat, 7 Nov 1998
20:58:17 -0500
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From: foster <foster@ICONTECH.COM>
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Congratulations to the Allison family. SO happy to hear everything is
going
well for Mom and family.
Great to hear Nicole is on the mend. I can only imagine how hard it
must be
with casts because Billy did not have casts after his surgery.
Thanks Lynn and Judy for your help with the hats.
Thinking of Emily and Jacob and their families.
Karen (PA)
=========================================================================
Date: Mon, 7 Sep 1998
09:32:40 -0400
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From: Andrea Gartner
<agartner@PEGANET.NET>
Subject: Re: 11/4 Newborn diagnosed with
apert - help
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Hi Bonnie,
My name is Andrea Gartner. I am a 20 yr old with Apert.
I don't know how
series the Apert is, or anything about raising a child with it.
In my
case, I wasn't severe. I was born with webbed fingers, toes,
and the
typical Apert face. You can find my picture on Teeter's
Page
(www.apert.org). All I can say is that he can have a pretty "normal"
life.
The best advice I can give is to support and love him just like
an average
child.
The best support group I know is this listserv. I think there's
even
families in California on it. There's also Christine Clarks organization
If you or your daughter have any questions, please ask. I'll be
more than
happy to answer them. My e-mail address is agartner@peganet.com.
If you
wish to contact me via snail mail. please let me know privately and
I give
you my address.
I wish the very best for your stepgrandson.
Andrea Gartner
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Date: Sat, 7 Nov 1998
22:00:08 EST
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From: Yonstein@AOL.COM
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HELP. what did I do wrong? I cannot open the files for Carmen Rae either.
HAPPY BELATED BIRTHDAY to MAR MAR IUCKER on November 1st and Happy birthday
to
Roxy Chan on November 9th. Hope they were/are great days for
you both.
Emily is doing great, crawling all around with her cast on. She
has already
hit me in the head when lifting her arm up. Boy, that thing weighs
a ton.
Glad to hear Nicole is doing well. I can't imagine two casts
at the same
time, though.
Hope everyone else is well.
Best wishes,
Janine Krebs
=========================================================================
Date: Sat, 7 Nov 1998
22:07:46 EST
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From: Nodrmat26@AOL.COM
Subject: A Few Things
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Zoey's Mom here. I cannot for the life of me pull up the pics
of Carmen Rae,
I believe I can only pull up JPG or GIF formats. Does anyone
have tips on how
to convert to these formats?
Congratulations to the Allison family on the birth of their new baby!
Zoey woke up from her nap on Friday with the sniffles. Her surgery
is
sceduled for the 24th. I'm a little worried, because she almost
always spends
a few days in the hospital when she gets sick and I really want this
hand
surgery over with before the holidays. If everyone wouldn't mind
willing
Zoey's cold to go away. (smile)
Christina
San Antonio
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Date: Sat, 7 Nov 1998
22:14:52 -0500
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From: ROBIN L HILL
<CARMENRAE@PRODIGY.NET>
MIME-Version: 1.0
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I don't know what is wrong. It seems as though the AOL users can't
open
the files with Carmen's pictures. Something to do with MIME (Microsoft
Internet Mail...) Do we have any computer experts out there that
might be
able to help?????? I am really amazed I was able to send them
at all;
sorry I am not much help. If I need to send them different I
would be
happy to; however, I don't know what to do!!!!
Robin Hill
----------
> From: Yonstein@AOL.COM
> To: APERT@LISTSERV.AOL.COM
> Subject:
> Date: Saturday, November 07, 1998 10:00 PM
>
> HELP. what did I do wrong? I cannot open the files for
Carmen Rae
either.
>
> HAPPY BELATED BIRTHDAY to MAR MAR IUCKER on November 1st and Happy
birthday to
> Roxy Chan on November 9th. Hope they were/are great days for
you both.
>
> Emily is doing great, crawling all around with her cast on.
She has
already
> hit me in the head when lifting her arm up. Boy, that thing
weighs a
ton.
>
> Glad to hear Nicole is doing well. I can't imagine two
casts at the
same
> time, though.
>
> Hope everyone else is well.
>
> Best wishes,
>
> Janine Krebs
=========================================================================
Date: Sat, 7 Nov 1998
22:18:39 -0500
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From: ROBIN L HILL
<CARMENRAE@PRODIGY.NET>
Subject: Re: A Few Things
MIME-Version: 1.0
Content-Type: text/plain; charset=ISO-8859-1
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It seems everyone having trouble are on AOL. When I received the
EMAIL on
the listserver the files were in jpg. What are you getting??????
I don't
have a clue. I guess this is what happens when a computer-illiterate
tries
to do fancy things on her computer.
Robin
----------
> From: Nodrmat26@AOL.COM
> To: APERT@LISTSERV.AOL.COM
> Subject: A Few Things
> Date: Saturday, November 07, 1998 10:07 PM
>
> Zoey's Mom here. I cannot for the life of me pull up the pics
of Carmen
Rae,
> I believe I can only pull up JPG or GIF formats. Does anyone
have tips
on how
> to convert to these formats?
>
> Congratulations to the Allison family on the birth of their new baby!
>
> Zoey woke up from her nap on Friday with the sniffles. Her
surgery is
> sceduled for the 24th. I'm a little worried, because she almost
always
spends
> a few days in the hospital when she gets sick and I really want this
hand
> surgery over with before the holidays. If everyone wouldn't
mind willing
> Zoey's cold to go away. (smile)
>
> Christina
> San Antonio
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Date: Sun, 8 Nov 1998
17:39:33 +1300
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From: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: Re: Self Image
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
>It is funny though....people
>say we live in a society where we are constantly being compared to
>"Barbie" (who has been said to be perfect, at least that's what you
hear
>on talk shows). And after all this time Barbie has an imperfection.
Personally I think Barbie IS an imperfection, but if you think of it from the point of view of the children - literally their point of view, some of us, okay, some of YOU may in fact look like that. When you're that size, from the floor the legs probably look longer and the upper bits that much bigger than reality, and at that age they are pretty important bits!
I have no explanation for why some grown men prefer that shape though!
:-)
Cheers
Ann
NZ