Don, glad to hear Tetter's surgery went well. Wow! only
1 night at the
hospital. I hope we get as lucky. Brenna will be having
her T & A's out
on Aug 21st. Our ENT told us that these kids can be in the hospital
several days to several weeks depending on the amount of swelling.
He has
got me a little nervous to be quite honest. I hope our surgery
goes as
smoothly as Teeters. Glad to here she is back to her self again.
Hugs, RObyn J.
At 08:50 AM 7/21/98 -0400, you wrote:
>Good morning everyone -
>
>Just a quick note to let you all know Teeter's surgery went well.
>During surgery, the doctor decided not to remove her adenoids due
to the
>difficulty of the procedure and the small benefit likely from their
>removal due to their position. We spent one night in the hospital.
>
>She's been a little cranky, and not eating and drinking very well,
and
>was running a low grade fever. Last night we called the ENT
and he
>recommended we take her to the pediatric emergency room as a precaution
>to have her checked. While we were getting ready to go she perked
up
>and began to be like her old self. On the way to the hospital
Teeter
>announced that she would like a hot dog from a particular local fast
>food place, so we reversed direction and took her there. We
never did
>make it to the hospital!!!
>
>Don
>
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Date: Wed, 22 Jul 1998
07:59:56 EDT
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From: Jennifer Graham
<Jenngram@AOL.COM>
Subject: Re: First Op. Andrew born 4/30/98
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Well...ditto what Robin said....one thing I told Raquel and Jack was
to not
only expect swelling of the head, but of the ENTIRE body due to the
amount of
fluids given during surgery. That one really shocked me..Jordan looked
like
Stay-Puff the marshmellow man...And although I knew he would get the
fluid
support, I just was so focused on preparing for what his head would
look like,
that I neglected to think about the rest of him...it was quite a shocker.....
Jordans personality was terrific...little grumpy, esp. for me.....whenever
Joe
would come in he would give him big smiles...he'd hear me and burst
into
tears. Jordans swelling went down after about 24 hrs...at least enough
he
could see....He did really well...and improved a lot each day
Best of luck w/ Andrews surgery.....I know it will be a huge relief
to have it
done and over...If you have any questions feel free to e-mail me privetly
or
here on the list
Jenn(TAmpa/St. Pete)
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Date: Wed, 22 Jul 1998
13:32:06 EDT
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From: Jennifer Graham
<Jenngram@AOL.COM>
Subject: Re: Delta Society
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I saw the show and it was VERY good. Down here in Fla. we od have some
pet
therapy..primarily using horses for neurolgically based situations.
The kids
as well as therapist (humans and animals) love it and its fun to watch.
I also know we have a few places that allow families to give homes to
dogs
fort heir first year of life...so I guess puppies is a better word.....but
theses families just give them a lot of love and basic potty training...then
after a year they go away to a school where they are taught to help
the deaf
and blind..then they are paired up with a handicapped individual based
on
personality (of the person and dog). Its really carefully done b/c
if the two
don't mesh then more harm than good is done. I imagine its really hard
for a
family to give up the puppy they have come to love after a year.....but
its
for a good cause.
There are also several families here who have a dog that can somehow
detect
when a seizure is about to occur and warn the individual or the parenmts
of a
small child...by either acting strange...people eventaully pick up
on the dogs
behavior and learn what hes doing and trying to communicate...or the
dog may
just lay across the person about to have a seizure so they don't hurt
themselves by getting up before the attack occurs. The affected person
knows
not to move until the dog willingly allows them to do so....
Its all quite interesting and beneficial. Theses places/schools can
be found
usually through a veterinarian or the local human society if anyone
wants more
info.
Jenn (Tampa/St. Pete)
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Date: Wed, 22 Jul 1998
22:04:30 EDT
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From: Janine Krebs
<Yonstein@AOL.COM>
Subject: Re: First Op. Andrew born 4/30/98
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Hi Rich and Karen:
Emily had her surgery at 3 months old also. She was in PICU for
5 days and
intubated for 2 days. Her eyes were swollen shut for
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22:09:21 EDT
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From: Janine Krebs
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Subject: Re: First Op. Andrew born 4/30/98
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SORRY. I hit send.
Anyway, her eyes were swollen shut for 2 days. They told me she would
have
tubes coming out of every part of her body, and she did. She
started to take
her bottle on the third day, and she came home on the 5th. One
thing I do
remember is that the first 2 nights were difficult at home. And
for approx. 2
weeks she had very loose bowel movements, I guess as a result of the
anesthesia, the paid meds.and the sterroids they had given her for
swelling.
I will say that it is truly amazing to see the recovery process.
She had
stitches inside that dissolved and a layer outside that had to be taken
out by
the plastic surgeon about 2 weeks later. Now 9 months later I
have a hard
time finding the scar on her head unless her hair is very wet.
The plastic
surgeon did a zig-zag cut also so that if her hair parts naturally
it will be
harder to detect.
It's very difficult to see your cutie-pie like that. But it does
go away
quickly. Oh, yeah, she was a little black and blue around her
ears, so don't
be surprised about that either.
Hope I helped you guys. We'll be saying a special prayer
for Andrew and both
of you also. Good luck.
Janine Krebs
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Date: Wed, 22 Jul 1998
22:10:18 EDT
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From: Janine Krebs
<Yonstein@AOL.COM>
Subject: Re: Teeter tonsils
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Way to go Teeter. Enjoy being able to eat so well. I thought
all you could
eat after Tonsils was Jello.
Janine
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Date: Wed, 22 Jul 1998
23:10:32 EDT
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From: Resa and Mark
Pace <Copperhd87@AOL.COM>
Subject: Animal therapy
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A couple of weeks after Mitchell's cranial
surgery in May, we got a new
kitten, Daisy. It has been so wonderful for Mitchell. He
has always been a
bit on the quiet side, but the kitten really brings him out.
He has laughed
so much--it has just been wonderful. I too really think that
the cranial
surgery brought out his personality a bit, but this kitten has really
been
great therapy for him. He chases her, bats at her, squeezes her--he
uses all
his large and small muscles and all his mental and emotional energy
when he
plays with her. His first real word was "DAY". He started
using it the day
after we got the cat. He now calls her Days, but it is still
one of just a
few words he regularly uses. It has just been wonderful for all
of us to see
the joy he has had with this cat.
Daisy is very gentle with Mitchell, and although
he can get a bit rough,
she has never, ever tried to bite or scratch him. I was very
particular to
get a cat that was born into a family with small children so it would
be used
to being handled alot. I really think getting a kitten is one
of the best
things we have ever done for Mitchell. I think it would be great
therapy for
any child that needs that extra encouragement to really get up and
go. BTW
Mitchell is now 18 months old and rarely pays any attention to our
Collie.
Resa
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Date: Wed, 22 Jul 1998
23:24:41 EDT
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From: Andrea Gartner
<LUVS2WRTE@AOL.COM>
Subject: Re: Animal therapy
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I too agree that animals are great therapy for people with disabilities.
My cat, Bear, loves when I massage his head, and back with my toes.
He
doesn't go to others toes just mine. I'm not sure it does anything,
but it
helps me move my toes a bit, especially the right foot. He also
likes to
sleep in my bed. It seems he comes when I'm already sleeping
and gets up when
I do.
(We call him Bear because of his appearance and extremely friendly
personality.
Im glad to hear Teeter's home. :>)
-Andrea
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Date: Thu, 23 Jul 1998
12:15:27 -0400
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From: Jack and Raquel
<jara1@BELLSOUTH.NET>
Subject: Nicole's home....
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I just want to let all of you know that Nicole is home....She is doing
just great and looks great. Actually she looks a bit shorter
according
to Grandma (willow) her head is a lot shorter and she looks wonderful.
It's true what you all said it's incredible how these babies bounce
back. If it wasn't for the scare she has from ear to ear you
would have
no idea she had major surgery just one week ago.....Anyway we now have
to catch up with all our e-mail, I have not read any yet, I just wanted
to let you all know we are home and doing fine....
Talk to you later...
Raquel Miller.......
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Date: Thu, 23 Jul 1998
15:39:20 -0400
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From: ROBIN L HILL
<CARMENRAE@PRODIGY.NET>
Subject: Re: Nicole's home....
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Good Going!!! So glad to hear Nicole is home and doing well.
I know you
guys are soooooo relieved to have this surgery over! Take care
and keep us
updated.
Robin Hill
----------
> From: Jack and Raquel <jara1@BELLSOUTH.NET>
> To: APERT@LISTSERV.AOL.COM
> Subject: Nicole's home....
> Date: Thursday, July 23, 1998 12:15 PM
>
> I just want to let all of you know that Nicole is home....She is
doing
> just great and looks great. Actually she looks a bit shorter
according
> to Grandma (willow) her head is a lot shorter and she looks wonderful.
> It's true what you all said it's incredible how these babies bounce
> back. If it wasn't for the scare she has from ear to ear you
would have
> no idea she had major surgery just one week ago.....Anyway we now
have
> to catch up with all our e-mail, I have not read any yet, I just
wanted
> to let you all know we are home and doing fine....
>
> Talk to you later...
>
> Raquel Miller.......
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Date: Thu, 23 Jul 1998
20:55:29 -0400
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From: foster <foster@ICONTECH.COM>
Subject: Nicole's Home
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Jack and Raquel,
Great news to hear that Nicole is home.It is amazing how one week can
make
such a big difference. Try to relax now and enjoy your little girl.
Karen(PA)
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Date: Thu, 23 Jul 1998
22:04:24 -0700
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From: lisa mcgahan
<wmcgahan@IX.NETCOM.COM>
Subject: sleeping on stomach
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ever since morgan's posterior release last month i have been placing
her on
her stomach to sleep. her breathing is labored but no more than
when she
is on her back.does anyone else have their baby sleep on the stomach?
thank
- lisa
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Date: Fri, 24 Jul 1998
08:40:02 EDT
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From: Jenny Brown <Firefli007@AOL.COM>
Subject: Re: Nicole's home....
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Congratulations Nicole!!!! I am praying for your continued recovery
and good
health...
And for the rest of our little ones who are going through soi much!!
Hang in
there.
Love ya,
Jenny (Savh, ga)
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Date: Fri, 24 Jul 1998
08:00:11 -0700
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From: Penny Halverson
<phalvers@U.WASHINGTON.EDU>
Subject: Re: Teeter's surgery
In-Reply-To: <199807220404.VAA23162@mxu3.u.washington.edu>
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Hi Don
Glad to hear Teeter's surgery went really well. I had my tonsil
taken out when I was 6 yrs old. I know Teeter is a strong
and
happy kid. My thoughts and prayers are with Teeter's
recovery.
Take care.
Hugs, Penny :-)
mailto:phalvers@u.washington.edu
mailto:hwy2heaven@kendra.com
mailto:penny@crouzon.org
http://www.crouzon.org/
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Date: Fri, 24 Jul 1998
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From: Jennifer Graham
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Subject: Re: Nicole's home....
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Glad to hear Nicole is home and doing well...Enjoy your recovery period,
all
too soon it will be time to think about the pesky finger business!!!!!
Jenn(Tampa/St. Pete)
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Date: Fri, 24 Jul 1998
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From: Jennifer Graham
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Subject: Re: Teeter's surgery
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Glad all went well w/ Teeters surgery..nie to now how quickly she bounced
back, sine we too may be doing this in the future...hopefully DISTANT
future!!!!
Jenn(Tampa/St. Pete)
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Date: Fri, 24 Jul 1998
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From: baconsmith <bluenose@TELUSPLANET.NET>
Subject: Nicole's home
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jack and Raquel, that's great news.! Isn't it great to be home!
Keep us
posted on that angel of yours!
Pat and EvaJessie in Calgary
email to: bluenose@telusplanet.net
IM: onlypeach
It's never too late to have a happy childhood. Tom Robbins (Still
Life With
Woodpecker)
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Date: Fri, 24 Jul 1998
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From: Janine Krebs
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Glad to hear that Nicole is home and doing so well. I too remember
that
feeling of relief when you get her home. I must say that I was
amazed at how
quickly the scar seems to disappear also. We can hardly find
Emily's now
unless her hair is wet.
Take care,
Janine
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Date: Fri, 24 Jul 1998
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From: Janine Krebs
<Yonstein@AOL.COM>
Subject: Thank you to All!!
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I am going to try to write this letter without getting too emotional,
but I
don't know if I can.
Emily is having her lst birthday on Sunday, the 26th, and I find myself
soooo
emotional about it. It's amazing to me to think back a year ago.
I never
would have imagined that I could be sitting here feeling as happy and
content
with my life as I do. When she was born I couldn't see past a
minute at a
time, then an hour and eventually we went to day by day. Now
I can actually
see the future for all of us.
The first year of her life is so momentous for me, having been through
so much
in such a short time. I feel that we have gotten through that,
but yet we
have so much more to go. But at least I know now that it will
all be ok. Not
only is it ok, it's great. She is truly a special girl and a
blessing to all
of us. She is such a happy, loveable girl. And we survived
a whole year and
are all still together and happy, most of the time.
Anyway, the thank you is first to Don and Cathie for this listserv.
I must
say that without it I would be lost. Secondly to all of you who
have sat and
read my letters and tales of woe and had nothing but encouragement
and
friendship and good advice to offer, I thank you from my heart.
You are all
like a second family to me. I feel such a strong connection to
each and every
one of you here. We have something that links all of us together.
I know
that whenever I am having a difficult time I need to just turn on my
computer
and type away and someone here will know exactly how I feel.
That's a very
comforting thought.
So, thank you once again to all.
Janine Krebs
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Date: Fri, 24 Jul 1998
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From: foster <foster@ICONTECH.COM>
Subject: Thank you to all
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Janine
Birthdays around here are always a big time and when Billy had his
first
birthday it was great. I understand every thing you are saying and
it
something to be emotional about.It even warrents a few tears but only
tears
of joy.This has probably been the hardest year of your life so just
go with
it and enjoy every minute of Emily's special day. Wishing nothing but
the
best for her and all of her wonderful family on this special day.
Karen(PA)
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Date: Fri, 24 Jul 1998
15:36:45 -0400
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From: foster <foster@ICONTECH.COM>
Subject: Pictures
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According to the picture exchange list we are missing twenty-five pictures.
I am a littl disappointed and am wondering if this is the case
for anyone
else? I would really like Billy's book to be of everyone.
Karen(PA)
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Date: Fri, 24 Jul 1998
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From: Jack and Raquel
<jara1@BELLSOUTH.NET>
Subject: Thank you All
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Janine,
I cannot agree with you more. We too felt the same way you felt
when
our Nicole was born. A minute couldn't go by without me getting
butterflies in my stomach just to think about our situation.
But now it's like we found the pot on the other side of the rainbow,
like we saw the light at the end of the tunnel. With our good
Lords
precious love we have learned to realize that our child is a gift from
him to love and cherrish as are our other three children. At
first all
we saw was Aperts today all we see is Nicole, I cannot imagine our
lives
without her.
Without even realizing it Nicole has touched so many lives, just our
family alone has gotton closer more than we ever have been before.
I
want to share this small story with you all of what happend in the
hospital.
A couple of days after Nicki's surgery we were sitting in the waiting
area waiting for shift change. When a large family walked in
all crying
and some a little bit out of control, I realized something really bad
must have happened. Well, a mother was in a car accident with
her two
little daughters her three year old and her three month old.
It seems
that the baby had internal bleeding in her head and wasn't doing well.
After a couple of days the baby was better and according to the doctors
will need physical therapy and hopefully won't have any more
complications in the future years. So needless to say the parents
were
very relieved. We would stroll Nicole around in her stroller
and one
afternoon we took Nicole over to see them in the waiting area.
Well
they were all amazed at the surgery she had and how great she was doing,
they already new all the more surgeries she was going to have to indure
and were pretty shocked at that.
Well we went up to our room and not twenty minutes had gone by when
in
came the mother with a toy attached with a balloon for Nicki, the mother
was crying and all she told us was that Nicki had touched her so much.
She cried and cried I had to hug her to cosole her. All she said
was
she was such a precious baby and look what she has to go through and
what we have to go through and it somehow made her problems seem very
small and said that she didn't think she could handle it if it would
have happend to her. Of course that is where I stepped in and
said, yes
you could handle it. No one ever thinks they could handle something
like this until it happens to you and then somehow courage comes out
that you never thougt you had and it takes over. But you should
have
seen her she was very emotional but I think somehow by them meeting
us
it will help her handle her baby a little better. So I am glad
we met.
Well, I'm sure you guys were kind of glad I was not writing for a while,
cause I've already started with my long chapters....
Talk soon....
Raquel.....
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Date: Fri, 24 Jul 1998
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From: Jennifer Graham
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Subject: Re: Thank you All
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Well, I guess with these first b-days things really make us sit and think.....
I was at the Pediatricians yesterday and while Jordan was cruising along
the
furnature the doctor came in and did his thing then told me how amazed
he
was...that he never thought Jordan would be where he is...I told him
that Joe
and I always knew it, but probablly b/c we were to ignorant or stubborn
to
believe otherwise.
what really made this hit home was that I was starting our Christmas
letter,
and was describing what Jordan has been through this year (and we still
ahev 2
surgeries before the letters go out!!!!!!!!!)...I couldn't believe
what I was
reading...AND making it soundlike such a NORMAL everyday thing....Its
actually sorta funny...
But Jordans 1st b-day on 9-18 will be a special one for all that have
met
him...from grandparents flying in for the weekend...to the neighbors
nephews
(2 and 3 yrs) that have had a small lesson in differences and love
Jordan like
he was their little brother, always coming to see if he can play...always
bringing a tear to my eye, as I realize thet maybe the world won't
be quite as
mean...and that there are a few good people left!!!!
So Happy Birthday to Emily...she deserves a big ole party....as do her
parents....for making it through the first year...which is hard enough
without
all the "extras" we all endure. heres hoping subsequent years aren't
quite as
"busy"
Jenn(Tampa/St. Pete)
=========================================================================
Date: Fri, 24 Jul 1998
21:02:19 -0400
Reply-To: Information exchange and Internet
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From: ROBIN L HILL
<CARMENRAE@PRODIGY.NET>
Subject: Re: Pictures
MIME-Version: 1.0
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We're missing about the same! I still hope we'll get another picture
every
time I go to the mailbox. I have finally gotten Carmen Rae's
book up to
date with all the pictures we have gotten so far. Well, I haven't
gotten
Ashleigh Hamzsak's put together yet because we got it today.
She sure is a
cutie! Also, I think I lost track of telling who we had received
because
for awhile they came every day, but these kids are all such dolls.
I wish
I could get together with all the parents and kids in Carmen Rae's
book. I
made her a Creative Memories book and it has turned out so well!
Anyway,
hope to be receiving some more cuties soon!!!!!!
Robin Hill
----------
> From: foster <foster@ICONTECH.COM>
> To: APERT@LISTSERV.AOL.COM
> Subject: Pictures
> Date: Friday, July 24, 1998 3:36 PM
>
> According to the picture exchange list we are missing twenty-five
pictures.
> I am a littl disappointed and am wondering if this is the case
for
anyone
> else? I would really like Billy's book to be of everyone.
> Karen(PA)
=========================================================================
Date: Fri, 24 Jul 1998
21:47:53 EDT
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From: Lynn Thornquist
<Thornq@AOL.COM>
Subject: Re: Pictures
Mime-Version: 1.0
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Karen,
I too only have about 20. I was wondering the same thing.
I guess I can't
say much, because I have not yet finished mine, but I did send out
half of
them. Please let me know if anyone received Andrew Thornquist
in the mail.
Thank you.
Lynn
=========================================================================
Date: Fri, 24 Jul 1998
21:31:09 -0500
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From: Ize <ize@TACOMA.CEATLABS.OKSTATE.EDU>
Subject: Best Wishes
MIME-Version: 1.0
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We wish a speedy recovery for those of you that had surgeries recently.
Glad all went well with everyone.
We also want to welcome the
new members!!!!
The Ize's
=========================================================================
Date: Fri, 24 Jul 1998
21:31:14 -0500
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From: Ize <ize@TACOMA.CEATLABS.OKSTATE.EDU>
Subject: Re: Pictures
MIME-Version: 1.0
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foster wrote:
>
> According to the picture exchange list we are missing twenty-five
pictures.
> I am a littl disappointed and am wondering if this is the case
for anyone
> else? I would really like Billy's book to be of everyone.
> Karen(PA)
Hi Karen,
I am also wondering what
is going on!!!!! We are missing
seventeen pictures.
I hope that everybody received
Felipe's picture, excepted the last
three people that joined the list late.
The Ize's.
=========================================================================
Date: Sat, 25 Jul 1998
06:38:05 -0400
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From: Mark Smith <dsprado@PENN.COM>
Subject: Pictures
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We too have not gotten everyone's picture.
Although I can't say for
sure that we have sent out one to everyone, but I believe that
we have. But
don't hold me to that, I have been know to be wrong a time or two.
I will
have to take a look see this weekend. If you have not received
one yet
please email me ASAP at anyone of the following email addresses:
dsprado@penn.com
msmith@penn.com
mlsmith@penn.com
Michele is now trying to read this book "Women are from Venus, Men are
from
Mars" and sometimes it has been driving me crazy. Anyone else
have the
opportunity to read this and understand it, let me know.
We have just been lurking for the past month or so. Really busy
around
here. Work, extended school year, extra time for the girls at
the
babysitters, family, etc. etc. etc.....it never seems to end when summer
is
here. Been so busy that we have not even had the time to take
the boat up
to the lake at all!!! Bad part is the girls love that.
I have had it
cleaned since spring!! Oh well, priorities change.
But, we are still here. We have been reading all the mail daily.
Congratulations to all who have had successful surgeries, and best
of luck
on the ones that are coming up. Again, we will check this weekend
on the
photos and I will post a list of the ones that we have received.
You all
have a great weekend.
Mark
=========================================================================
Date: Sat, 25 Jul 1998
07:43:13 -0700
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From: Thomas Troudt
<ttroudt@SPRYNET.COM>
Subject: Derek's surgery
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Goodmorning to all,
I know that I have been more than a lurker than
an active participant
since joining but let me introduce my family to all the new people
that have
joined. My name is Diana Troudt. My husband, Tom and I
have two children,
Derek 3 with aperts and Darren 15 months. Derek has had 9 surgeries
up to
date. He was born with an unusual symptom that we haven't run
across with
anyone else on this list. Derek's diaphram wasn't conected at
birth. This
allowed the left lung to collapse and all of his abdominal organs to
be
where his lung should have been. His heart was pushed over to
the right
side but was developed correctly. He was 2 days old when he had
his first
"biggie" surgery and the surgeons were able to correct every internal
problem by stiching down the diaphram where it belonged. Since
then, he has
had many hand surgeries, one cranialfacial surgery, and tubes put in
his
ears twice. Derek to this day is developmentally appropriate
is all areas
and is only lacking in fine motor activies. He is going to be
attending
preschool this fall and we were extremely happy that he is able to
go to a
"normal" preschool and recieve OT while there. He is an incredibly
gifted
child who loves music and has an extremely outgoing and kind personallity.
He wants to be a choo,choo train when he grows up. Not a conductor
or
someone who drives it, but the actual train. He is by far the
most caring
and loving child that I have come across that is his age(of course
I'm just
a little bias).
Now for the tough stuff. Derek is going in
for his second cranial
facial surgery on July 30. We weren't expecting this surgery
until he was
about six. We were alerted to a possible problem when our eye
doctor had a
concern that she couldn't correct Derek's vision and that could possibly
mean pressure on his optic nerve. We had a ct scan done and it
did show
that Derek's intercranial pressure was too high and meant that surgery
was
needed. Derek has never had a shunt put in. He does have
slightly inlarged
ventricles in his brain but it was never felt that a shunt would be
benificial. We will be going to the Children's hospital in Denver
for the
surgery and anticipate a 4-5 day stay. When I asked Derek last
night if he
knew why he was going to have to go to the hospital, he replied,"they
are
going to put a helmet on me"
I ask for all your prayers during this difficult
time. I believe in the
power of prayer. God gave us this wonderful child and we have
benifited
more than words can say. The strength and love that our child
has brought
into our lives has taught us lessons that otherwise might have gone
unlearned. I thank God for Derek everyday and I wouldn't change
him for
anything. Sorry this letter is so long winded. I will let
everyone know
how surgery went sometime after we get home.
God bless the little children, Diana Troudt
in Greeley, Colorado
=========================================================================
Date: Sat, 25 Jul 1998
09:39:41 -0400
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From: ROBIN L HILL
<CARMENRAE@PRODIGY.NET>
Subject: Re: Pictures
MIME-Version: 1.0
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Lynn,
Carmen Rae received Andrew's pictures. He is such a cutie!
We used your
letter to outline his picture page! In fact, he has a two page
spread
because I already had a picture of your whole family! Thanks!!!!!!
Robin
----------
> From: Lynn Thornquist <Thornq@AOL.COM>
> To: APERT@LISTSERV.AOL.COM
> Subject: Re: Pictures
> Date: Friday, July 24, 1998 9:47 PM
>
> Karen,
>
> I too only have about 20. I was wondering the same thing.
I guess I
can't
> say much, because I have not yet finished mine, but I did send out
half
of
> them. Please let me know if anyone received Andrew Thornquist
in the
mail.
> Thank you.
>
> Lynn
=========================================================================
Date: Sat, 25 Jul 1998
09:56:23 -0400
Reply-To: Information exchange and Internet
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Sender: Information exchange and
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From: ROBIN L HILL
<CARMENRAE@PRODIGY.NET>
Subject: Pictures Carmen Rae has received!
MIME-Version: 1.0
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Content-Transfer-Encoding: 7bit
Thought I would post a list of the pictures Carmen Rae HAS received.
Here
goes:
Morgan McGahan
Vivi Zhang
Emily Krebs
Martha Palacio
Jacob Jones
Nicole Miller
Jordan Graham
Jonathan Siebert
Sarah LeCara
Quentin Zaengle
Rachel Fletcher
Michelle Clark
Andrew Thornquist
Vivi Mastellone
Billy Foster
Roxy Chan
Sarah Vicars
Zoey Mathis
Ceci Kilner
Felipe Ize
Nick Amerman
Courtney Jennerjohn
Jacob Bailey
Amy Esler
Sarah Yenney
Margaret Iucker
Seth Jefferson
Jasmyn Boczkowski
Amy Maclean
Kayla Smith
Colin Lynch
Andrea Gartner
Nate Finch
Brenna Johnston
EvaJessie
Ashleigh Hamszak
We are still anxiously awaiting the following:
Daryl Graham
Nicholas Graves
Joanne Lindamood
Holly Kelley
Kris Contreras
Mallory Youngblood
Nicole Contrinos
Evan Milburn
Julia Tait (I know about your situation)
Sara Younkin
Brooke Bell
Alex Irvin
Jenny Brown
Levi Parks
Andrew Hartley
I also have not received the following; however, I also have not sent
one
of Carmen Rae to:
Jaclynn Samhammer
Elizabeth deSilva
Hope to get some more pictures real soon! If you can't get them
out
though, we understand!!!!!!!!
Robin Hill
=========================================================================
Date: Sat, 25 Jul 1998
10:20:28 EDT
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From: Jennifer Graham
<Jenngram@AOL.COM>
Subject: Re: Derek's surgery
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We will keep Derek and his family in ouur thoughts and prayers...best
wishes
for a successful surgery and speedy recovery.
Jenn(Tampa/St. Pete)
=========================================================================
Date: Sat, 25 Jul 1998
10:44:49 -0400
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From: foster <foster@ICONTECH.COM>
Subject: Derek's Surgery
Mime-Version: 1.0
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Diane and Tom,
We will certainly be saying extra prayers for Derek and all of your
family.
Hope this surgery is a great success and Derek is home soon. All of
us have
learned the power of prayer and the mixture of prayer,patiences and
the
skills of some wonderful Doctors. Please let us know how everything
goes.
Karen(PA)
=========================================================================
Date: Sat, 25 Jul 1998
10:08:14 -0500
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From: Ize <ize@TACOMA.CEATLABS.OKSTATE.EDU>
Subject: Re: Pictures
MIME-Version: 1.0
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I also thought that would be a good idea to post a list of the pictures
that we did not receive yet. Just in case you are lost and not
sure if
you sent it to us or not.
1-Rachel Fletcher
2-Carol Graves
3-Joanne Lindamood
4-Lynn Thornquist
5-Eleen Kelley
6-Kris Contreras
7-Diane Youngblood
8-Belinda Vicars
9-Shannon & Lori Parks ( Levi)
10-The Contrinos
11-Marianne Camous & David Milburn
12-Rene Tait
13-Sara Younkin
14-Steve & Stacy Bell
15-The Irvins ( Alex)
16-Jenny Brown
17-Elizabeth da Silva
18-Jaclynn Samhammer
Jenny, Elizabeth and Jaclynn will receive Felipe's picture next week.
Hope to see your picture
real soon!
The Ize's.
=========================================================================
Date: Sat, 25 Jul 1998
10:13:51 -0500
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From: Ize <ize@TACOMA.CEATLABS.OKSTATE.EDU>
Subject: Re: Derek's surgery
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Diane and Tom,
You will be in our prayers. Good luck with the surgery.
God Bless,
The Ize's.
=========================================================================
Date: Sat, 25 Jul 1998
12:52:54 -0400
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From: Colleen Jones
<coljones@PTDPROLOG.NET>
Subject: pictures
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Does anyone have a complete list of people for the picture exchange?
I
know I sent most of Jacob's pictures but I am missing some names.
I still
need to get a few more copies made also. If someone could post the
list
with all the names that would be great. Enjoy the weekend.
Colleen and gang
=========================================================================
Date: Sat, 25 Jul 1998
11:08:37 -0600
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From: baconsmith <bluenose@TELUSPLANET.NET>
Subject: Pictures, Derek's mom
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
We also have received about 20 pictures. Now, I am saving return
addresses
so that I can send EvaJessie's pictures to those that I receive.
I lost the
list somewhere along the line and am pretty computer confused so haven't
tried those worksheets ... anyone anxiously awaiting can
let me know
privately and I'll get one off to you tout suite!
Best wishes to Derek. Is he a Thomas the Tank Engine fan, by any
chance? I
laughed out loud when I read about him and the train. What a
sweetie! I
see you are in Colorado. We are in Denver's twin city to the
north: Calgary.
Diana, it sounds like this took you by surprise. It's hard, isn't
it,
having it dropped on you when you least expect it. Well, there's
an upside
on the other side of the surgery. All we can do it go with it
-- don't push
the river; it flows by itself --
We also just learned of the extent of the surgery facing (5yo) EvaJessie
(although I should have figured it all out earlier -- I feel pretty
fragmented about this one). But we have until September to get
organized.
Anyway, we'll be thinking of you there on Thursday. Best of luck
and stay
healthy!
Pat and EvaJessie in Calgary
email to: bluenose@telusplanet.net
IM: onlypeach
It's never too late to have a happy childhood. Tom Robbins (Still
Life With
Woodpecker)
=========================================================================
Date: Sat, 25 Jul 1998
16:05:17 EDT
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From: Christina Mathis
<Nodrmat26@AOL.COM>
Subject: Things
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Hello, Zoey's Mom here~
I wanted to say that I'm glad that Teeter and Nicole's surgery went
well. For
all that have 1st b'day's coming up, congradulations. Zoey's
first birthday
party was a very big deal for our family also. I went all out,
invited
absolutely everyone that knew her, and she had a blast. I overlooked
the fact
that she developed a cold a few days later and spent the night in the
hospital, because the joy overshadowed that.
Also, wanted to let everyone know that Zoey will be having another
hand
surgery on just one hand this time (I'm not complaining) and it will
be on
Friday, July 31st. It hasn't really sunk in yet that she will
again be under
the knife, because I'm still getting plenty of sleep at night, but
soon it
will and I will be a mess.
Everyone else who has surgeries coming up, God Bless your children and mine.
Christina
San Antonio
=========================================================================
Date: Sat, 25 Jul 1998
14:41:08 -0600
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From: Chad & Denise
Graham <cgraham@INFOAVE.NET>
Subject: PICTURES
MIME-version: 1.0
Content-type: text/plain; charset="us-ascii"
I have received Andrew's picture. He looks like he provides a
lot of
entertainment!! Daryl is always suprising me with things that
he decides
to try and things that he mimicks.
Robin - I am sorry you didn't get Daryl's picture. I looked on
my adresses
sent out and I sent one to you. Probably a mix up in the mail.
I will get
one out to you soon!!
If any of you have not received Daryl Graham's pictures yet, please
let me
know and I will get it out to you soon!!
I also would love to have an updated list of the pic. exchange.
I know I
have missed the last few that have joined late.
God bless all of you that are facing surgery soon! Isn't it funny
how we
all talk about surgeries as others talk about what has happened in
their
(normal) day!
Denise Graham
=========================================================================
Date: Sat, 25 Jul 1998
16:43:47 -0500
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From: Ize <ize@TACOMA.CEATLABS.OKSTATE.EDU>
Subject: Re: pictures
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Colleen Jones wrote:
>
> Does anyone have a complete list of people for the picture exchange?
I
> know I sent most of Jacob's pictures but I am missing some names.
I still
> need to get a few more copies made also. If someone could post the
list
> with all the names that would be great. Enjoy the weekend.
> Colleen and gang
Pictures exchange addresses:
1. Rachel Fletcher
3900 Vernon
Memphis, Tn 38122
2. Janine Krebs
(Emily)
187 Rhode Island Avenue
Massapequa, New York 11758
3. Andrea Gartner
11394 Royal Tee Cir.
Cape Coral, FL 33991
4. Denise Graham
(Daryl)
1030 Fairfield Pike
Shelbyville, TN 37160
5. Ann Luxton and Howard and Amy Esler
6 Peter Mulgrew Street
Avondale, Auckland 7
New Zealand
6. Jennifer Graham
6220 7th Ave North
St. Petersburg, FL 33710
7. Carmen Rae Hill (Mike and Robin Hill)
70 Woodmoor
Newnan, Georgia 30263
8. The Bacon Smith Family
100 Clarendon Road, NW
Calgary, Alberta, Canada
T2L 0P3
9. Carol Graves
(Nicholas)
370 Oakland Rd
Madison, AL 35758
10. Joanne Lindamood
1533 Regent Avenue
Springfield, OH 45503
11. Raquel Miller
(Nicole)
16703 Redwood Way
Weston, Fl. 33326
12. Judy or Nick Amerman
1035 E. Fairview Ave.
Morris, Il. 60450
13. The Sieberts
5226 Walnut Peak Ct.
Kingwood, TX 77345
14. Felipe Ize
124 Brumley # 10
Stillwater, OK 74074
15. The Jennerjohns
6987 Ridgetop Dr. N E
Kiezer, Oregon 97303
16. The Smith's (Patti, Daniel & Jasmyn)
1538 Morgan Road
San Bernardino, CA 92407
17. Dori Jefferson
83 Pine Lane
Murphysboro, IL 62901
18. The Lynch Family
P.O. Box 609
Lake George, NY 12845
19. Quentin Zaengle
119 Tudor Drive
North Wales, PA 19454
20. The Bailey Family
RR 1, Box 74
El Paso, IL 61738
21. Lynn Thornquist
4 Taylor Road
Holliston, MA 01746
22. Leann Maclean
RR 2 Site 4 Box 35
Onoway, Alberta, Canada
TOE 1VO
23. Roxanne Chan
16240 East McGill Road
La Mirada, CA 90638
24. Vivi Zhang
2279 Pinehaven Dr.
Niskayuna, NY 12309
25. Ellen Kelley
(Holly)
411 Spring Mill Rd
Anderson, IN 46013
26. Jennie Muggli
Rt 1 Box 105C
Weimar, TX 78962-9530
27. Kris Contreras
1422 N. Park Ridge
Deer Park, TX 77536
28. Mark and Michele Smith
208 Connecticut Avenue
Warren, PA 16365
29. Morgan Kaye McGahan
11 Elsway Road
Short Hills, New Jersey 07078
30. Jones Family
RR 3 Box 275
Middleburg, PA 17842
31. LeCara Family
8907 Gayguin
Houston Texas 77088
32. Foster Family
1335 Sanderson Ave
Scranton, PA 18509
33. Diane Youngblood
445 Horne Hollow Rd
Culleoka, TN 38451
34. Robyn Jonston
PO Box 25633
Eugene, OR 97402
35. The Contrinos
7310 Norman Road
North Tonawanda, NY 14120
36. Marianne Camous & David Milburn
Sarah Kate and Evan Milburn
412 Sycamore Street
San Carlos, CA 94070
37. Margaret Iucker
C/O Joana Magno
811 Moaniala St.
Honolulu, HI 96821
38. Rene Tait
1909 Marten Avenue
Comox, B.C.
V9M 2J9
Canada
39. Nate Finch
10 Field Rd.
Lexington, Ma
02173
40. Christina (Zoey) Mathis
7735 Branston
San Antonio, TX 78250
41. The Kilner Family
6571 Sand Wedge CT
Alexandria, VA 22312
42. Sara Younkin
PO Box 534
Lewisburg, PA 17837
43. Steve and Stacy Bell
(Brooke Leann)
8122 New Cut Rd.
Severn, MD 21144
44. The Irvins (Alex)
47 South Hempstead Road
Westerville, Ohio 43081
45. Claudia Mastellone
1310 40th Ave # A
S.F CA 94122
46. Laura Pulido
392 S. Woods Avenue
Los Angeles, CA 90022
47. Christine Clark
Apert Support & Information Network
PO Box 1184
Fair Oaks, CA 95628
48. Sarah, Tim & Bea Yenney
C/O Magno
6616 24th Ave. S.
Seattle, WA 98108
49. Belinda Vicars
993 North Aspen Way
Layton, UT 84040
50. Carol Hamzsak
2 Woomera Street
RYE SIC 3941
Australia
51. Shannon & Lori Parks (Levi)
19270 Coal Valley St.
Marion, Il 63959
52- Jenny Brown
230 East 52nd Street
Savannah, Georgia 31405
53- Elizabeth da Silva
Av. Quito Y P. Solano
Edif. Mag, Piso 19
Guayaquil- Ecuador
54- Jaclynn Samhammer
90 Martha Drive
Fallsington, PA 19054
We have a total of 54 addresses. If we missed someone, please let us
know.
Thanks,
The Ize Family.
=========================================================================
Date: Sat, 25 Jul 1998
17:45:13 -0400
Reply-To: Information exchange and Internet
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and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
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From: foster <foster@ICONTECH.COM>
Subject: Zoey
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Happy to hear that Zoey enjoyed her birthday party.We will be praying
for
Zoey as well as everyone else.
Karen(PA)
=========================================================================
Date: Sat, 25 Jul 1998
18:43:10 EDT
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----- The following addresses had permanent fatal errors
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----- Transcript of session follows -----
... while talking to mail.listserv.com.:
>>> RCPT To:<apert@listserv.com>
<<< 550 <apert@listserv.com>... User unknown
550 <apert@listserv.com>... User unknown
--------------------
Final-Recipient: RFC822; apert@listserv.com
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Message-ID: <40711ef9.35ba1d7d@aol.com>
Date: Sat, 25 Jul 1998 14:01:31 EDT
To: apert@listserv.com
Mime-Version: 1.0
Subject: picture exchange
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
X-Mailer: AOL 3.0 for Windows 95 sub 58
Hi everyone, Jasmyn's mom, Patti here. I believe I have sent out
pictures to
everyone that I have rec'd one from. I kinda lost track of the
list, but had
everyone's envelopes. If there is anyone that has not rec'd a
photo of Jazz,I
have plenty left and would be happy to send them. Howard and
Ann, I just put
yours in the mail today, I wanted to check on the postage required,
and I'm
sorry, with Jasmyn's surgery coming up, I put it off too long.
You should be
getting it this week. But please, anyone who has not rec'd one,
just let me
know.
Best to All :)
--part0_901406590_boundary--
=========================================================================
Date: Sat, 25 Jul 1998
15:16:52 -0700
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
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and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: "Brent E. Young"
<beyoung@IX.NETCOM.COM>
Subject: pictures
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
Hi From Kelly Spadini
I haven't really written much of anything since I joined but I saw the
letters about the pictures and I thought it would be really neat if
I
could join the picture exchange thing. I would like pictures to show
my
family and friends (who seem very interested). I will try to send some
to all the people who's addresses I have and I hope I can get some
too.
I also wanted to wish everyone who is having surgery luck and I will
be
thinking about them.
My address is: 909 Woodlake Lane
Roseville, Ca 95661
=========================================================================
Date: Sun, 26 Jul 1998
22:11:17 +1200
Reply-To: Information exchange and Internet
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From: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: Re: Pictures
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
We have received 34, so there are certainly some (hopefully) still in the mail!
If anyone on the list has not received a photo of our Amy, please let me know.
Ann
NZ
At 03:36 PM 24/07/98 -0400, you wrote:
>According to the picture exchange list we are missing twenty-five
pictures.
>I am a littl disappointed and am wondering if this is the case
for anyone
>else? I would really like Billy's book to be of everyone.
>Karen(PA)
>
>
=========================================================================
Date: Sun, 26 Jul 1998
07:54:01 EDT
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From: Jennifer Graham
<Jenngram@AOL.COM>
Subject: Re: Things
Mime-Version: 1.0
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Christina,
Wanted to wish you and of course Zoey good luck on the next surgery...is
this
her second hand surgery? I know Jordans second one (alos only one hand
) went
MUCH MUCH smoother than the first...no lost sleep, no pain meds...it
was
almost like he knew what was going on....like he was prepared and is
wasn't
such a shock....it makes it easier for us to get ready for hand surgery
#3 on
Sept. 14..hopefully Zoey will fair as well...and you will get the much
needed
rest so you can entertain a little one that can't do it herself for
a few
weeks!!!!
Good Luck
Jenn(Tampa/St. Pete)
=========================================================================
Date: Sun, 26 Jul 1998
10:29:59 EDT
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From: Janine Krebs
<Yonstein@AOL.COM>
Subject: Re: Things
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
First of all, I wanted to thank everyone for wishing Emily a Happy Birthday.
We had a great party last night and she was a real trouper and enjoyed
herself
very much. She really loved the ice cream cake.
Best wishes to Derek on his upcoming surgery. Its' true, when
you aren't
expecting it for a while, I think it is harder to handle. We
are sending our
prayers out to you.
And to Zoey, best wishes to you on your hand surgery.
Janine
=========================================================================
Date: Sun, 26 Jul 1998
11:12:28 -0400
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Sender: Information exchange and
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From: ROBIN L HILL
<CARMENRAE@PRODIGY.NET>
Subject: Upcoming surgeries
MIME-Version: 1.0
Content-Type: text/plain; charset=ISO-8859-1
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We wanted to wish Zoey and Daryl good luck with their upcoming surgeries.
We'll be praying for a smooth surgery and speedy recovery for both
of you.
We are trying to get ourselves prepared for Carmen Rae's first hand
surgery. We see the hand surgeon on August 10th and will probably
be in
for surgery sometime in September. I seem to be having a hard
time
accepting that we still have more surgeries to come. It seems
like after
the last one it should be over!!!!!!! Anyone else know
what I am talking
about?????? Well, anyway good luck to Zoey and Daryl and anyone
else I may
have missed with upcoming surgeries. We'll be thinking of you!
Robin Hill
=========================================================================
Date: Sun, 26 Jul 1998
14:41:29 EDT
Reply-To: Information exchange and Internet
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Sender: Information exchange and
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From: BO p 1912 <BOp1912@AOL.COM>
Subject: Hi
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
Hi all
I also join the listserve but did not write much , I would like
to get on
the picture exchange I am 34 years old and also have Aperts Syndrome
, So if
someone can help me with it I will be happy to send me picture to them
also
Here is my address
Beth Oppelt
2680 Brunswick
Dubuque Iowa
52001
Thank you and good luck to everone who is having surgerys
And Happy Birthday
to you Emily
=========================================================================
Date: Mon, 27 Jul 1998
13:08:58 +1200
Reply-To: Information exchange and Internet
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and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
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From: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: Re: Upcoming surgeries
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
It seems like after
>the last one it should be over!!!!!!! Anyone else know
what I am talking
>about??????
Only too well!
All the best for the 10th
Ann
NZ
=========================================================================
Date: Sun, 26 Jul 1998
22:02:30 EDT
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From: Marianne Camous
<Camous@AOL.COM>
Subject: Re: sleeping on stomach
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
Evan's always been a tummy sleeper but with a trach and mist mask he
has a
protected airway as well as a monitor(in past) and pulse oximeter.
His
favorite position is face down- (Yup- smack nose down) Hospital personnel
and
new home nurses would be really shocked until i pointed out that we
might like
it too if our foreheads protruded farther than our noses!!
Marianne
=========================================================================
Date: Sun, 26 Jul 1998
22:08:24 EDT
Reply-To: Information exchange and Internet
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Sender: Information exchange and
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From: Marianne Camous
<Camous@AOL.COM>
Subject: Re: Pictures
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
OOPS we're guilty parties. I have everything done but ran out of labels
for
the back of the pictures....have 2 more days off and it's at the top
of my
list. Summer is killing me between work, swimming lessons, and a plethora
of
family birthdays to celebrate (last week was 10 little girls to the
Madeline
movie and pizza) My apologies....better late than never!
Marianne
PS I haven't even had time to get to my email; for about 2 weeks- My
thoughts
are with y'all just sometimes not in writing.
=========================================================================
Date: Mon, 27 Jul 1998
00:12:42 EDT
Reply-To: Information exchange and Internet
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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: Christina Mathis
<Nodrmat26@AOL.COM>
Subject: Re: Things
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
Jenn~
Thanks for wishing Zoey well. Yes, this is her 2nd surgery.
I'm relieved
that it's only one hand and I sure hope it does go more smoothly this
time.
Zoey is a true fighter as all our children seem to be.
Take care,
Christina
San Antonio
=========================================================================
Date: Mon, 27 Jul 1998
10:33:20 -0700
Reply-To: Information exchange and Internet
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Sender: Information exchange and
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From: Mary cox <landmcox@WEBTV.NET>
Subject: Apert Syndrome
Content-Type: Multipart/Mixed; Boundary=WebTV-Mail-598847796-1093
Content-Transfer-Encoding: 7Bit
MIME-Version: 1.0 (WebTV)
--WebTV-Mail-598847796-1093
Content-Type: Text/Plain; Charset=US-ASCII
Content-Transfer-Encoding: 7Bit
Hello,
My name is Mary Cox. I to have a Aperts Syndrome
child. he is 23
years old. We live in Reno Nevada. I have just found your information.
When Timmy was born in 1975 there was little info on his condition.
he
to has had the surgery on his skull, and fingers, but not the feet.Also
he has had other problums as you know.Please advise me of any other
info
i might need to join.
Thank You,
Mary Cox
--WebTV-Mail-598847796-1093
Content-Description: signature
Content-Disposition: Inline
Content-Type: Text/HTML; Charset=US-ASCII
Content-Transfer-Encoding: 7Bit
<html>
<body bgcolor="black"><body text="gold"></body>
<img src=
"http://members.tripod.com/~gifs123/babydance.gif">
<img src=
"http://members.tripod.com/~webtv23/juke100.gif">
<bgsound src=
"http://members.tripod.com/~webtv18/rocknroll.mid">
</html>
--WebTV-Mail-598847796-1093--
=========================================================================
Date: Mon, 27 Jul 1998
16:13:33 -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: foster <foster@ICONTECH.COM>
Subject: Re: Apert Syndrome
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
>Hello,
> My name is Mary Cox. I to have a Aperts Syndrome
child. he is 23
>years old. We live in Reno Nevada. I have just found your information.
>When Timmy was born in 1975 there was little info on his condition.
he
>to has had the surgery on his skull, and fingers, but not the feet.Also
>he has had other problums as you know.Please advise me of any other
info
>i might need to join.
>
Thank You,
>
Mary Cox
>
>Content-Description: signature
>Content-Disposition: Inline
>Content-Type: Text/HTML; Charset=US-ASCII
>Content-Transfer-Encoding: 7Bit
>
><html>
><body bgcolor="black"><body text="gold"></body>
><img src=
>"http://members.tripod.com/~gifs123/babydance.gif">
><img src=
>"http://members.tripod.com/~webtv23/juke100.gif">
><bgsound src=
>"http://members.tripod.com/~webtv18/rocknroll.mid">
></html>
>
Mary,
I guess since your message came over the list server today that you
have
already done whatever needed to be done to join. Anyway welcome to
our
family of some of the best people you will ever find. My son Billy
who was
born with Apert Syndrome is almost 17 months old and seems to be doing
pretty well.He will be having his second hand surgery on Augt.13th.
This
will be his sixth surgery so far and he has been wonderful trough them
all.
Billy has six sisters and knows how to get what he wants from all of
them.
It is to bad that Timmy and you were not able to have this group around
when
he was born, still I am glad you found us now. I would love to hear
some
more about Timmy and how he is doing . I don't know what we could do
to help
you but if there is something please let us know. I am sure you will
be a
big help to us.
Reading your letter I am reminded how lucky we are to have someone like
Don
and Cathie Sears and Cristine Clark out there making it possible for
us to
have this lifeline to others. Thanks again for these great people.
Karen(PA)
=========================================================================
Date: Mon, 27 Jul 1998
16:51:34 -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: foster <foster@ICONTECH.COM>
Subject: Siblings
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
I was wondering if anyone who has older or younger kids who have a brother
or sister with Aperts would be interested in having a penpal or e-mail
pal
to talk to about anything really but maybe to be able to talk to someone
else who is or has been going trough some of the same things. I am
asking
this because I have been thinking alot about some of the things my
daughters
have said and asked about. My daughter Lacey who is ten is always having
bad
dreams when ever Billy has a new surgery even though she goes to see
him and
does ask the doctors questions. Example- A week ago Billy's forehead
had a
little red bump on it and she saw it and got worried and I told her
the bump
has always been there it is just that the red mark was there because
he was
rubing he head in the rug. The next day she told me that she had a
dream
that her and Billy were in a boat with their Dad and that Billy fell
out and
bumped his head and he drowned. I told her that the dream was only
because
she was worring about the mark on his head and that I understand how
scared
she must have been and after a while she seemed ok about it. So, I
started
to thinking about how hard it must be for some of these siblings
not to
have someone to talk to. After all we have the server and many people
to
talk to and they only have their family and friends to talk to.
This lead
me to the idea of them being able to talk to someone who may know exactly
how they feel.Now I have lacey who is ten, and her sisters are 14,
15, and
13. If anyone is interested please let me know and I am sure they would
be
happy to write to someone. Billy also has a 4 and 20 year old sister
but one
can't read and the other only has time for school right now.
Thanks Karen(PA)
=========================================================================
Date: Tue, 28 Jul 1998
09:03:09 -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: Don Sears <dsears@SCRS.STATE.SC.US>
Subject: Re: A Little Boy who Needs a
Family
Comments: To: "LJDWS@aol.com" <LJDWS@aol.com>
MIME-Version: 1.0
Content-Type: text/plain
Thanks for the info - I am posting this entire message to the listserv.
Folks, Jo is not a listserv subscriber so you'll need to reply directly
to her if you wish to respond. ---Don
> -----Original Message-----
> From: LJDWS@aol.com [SMTP:LJDWS@aol.com]
> Sent: Sunday, July 26, 1998 2:42 PM
> To: CatNDon@apert.org
> Subject: A Little Boy who Needs a Family
>
> Hi!
> My name is Jo Simon. I live in No. Calif. A few days
ago I was
> browsing on-
> line Adoption Photolistings and came across this sweetie-pie.
(We
> have two
> adopted sons with Down syndrome. I am always thinking of adopting
> another
> child but with our two birth children and the two little boys my
head
> says our
> home is full. My heart is another matter...)
>
> ANYWAY... There is a 2yr. old boy with Apert syndrome in New Mexico
> who is
> waiting to be adopted. We were Foster Parents of a little girl
with
> Fraser
> syndrome for two and a half years and I developed a special place
in
> my heart
> for kids with cranio-facial challenges. Then, recently my
> brother-in-law
> married a lovely woman with Crouzon's. I was curious about
Apert syn
> and
> whipped out my Except Parent Resource Guide. There you were!!!
>
> It occured to me that you might be able to help this munchkin out.
> Perhaps
> you may know of someone who is looking for exactly this child to
join
> their
> family. Even if you are not able to help in his adoption, I
think it
> would be
> great for everyone involved in caring for him to know about you!
(As
> I write
> this, I am thinking of how I might convince my husband... Noooo.)
>
> In any case, I thought it was a good idea to let you know about Cesar
> M.
> Incidentally, I believe that whoever adopts him would recieve a
> monthly
> subsidy to help with his care, and also probably he would have
> whatever the
> equivalent is to Medi Cal (Medicaid?). We never had to pay
a penny
> for all
> the care and surgeries our foster daughter needed. ( We took her
to
> UCSF
> Cranio-facial Clinic and they were great!)
>
> If you have any questions about Special Needs adoptions, please feel
> free to
> ask me!
>
> O.K. I will send you the page for Cesar M. In case
that doesn't
> work, he
> can be found in the Los Ninos, New Mexico On-line Adoption Magazine
>
http:/cyf_abq.state.nm.us/adopt/ninos.html
>
> <A HREF="http://cyf_abq.state.nm.us/adopt/cesar_m.html">cesar_m</A>
>
> <A HREF="http://cyf_abq.state.nm.us/adopt/indchild.html">Listing
of
> Children
> </A>
>
> Your website is WONDERFUL!!!
> Thank you for being there! Sincerely, Jo Simon
(LJDWS@aol.com)
=========================================================================
Date: Tue, 28 Jul 1998
10:01:46 -0500
Reply-To: Information exchange and Internet
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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: Laurie Bailey
<jkb@ELPASO.NET>
Subject: Fabulous weekend!!!
MIME-Version: 1.0
Content-Type: text/plain; charset=ISO-8859-1
Content-Transfer-Encoding: 7bit
Hey gang!
Let me just tell you about the fabulous weekend my kids and I just had.
Myself, Jacob and Jordan went to Lake Shelbyville, Illinois to meet
up with
the Amermans, Jeffersons, and Tingleys. It was great!
We had wonderful weather and a great time. It was so good to finally
meet
Seth. He is a very polite young man. He and Nick had a great time playing
together with Carroline Tingley's older sister, Taylor. All three are
around the same age (6-8). Jacob had a heck of a time trying to imitate
everything they did.
Jacob went swimming for the first time. Didn't quite like it at first
but,
mom held on tight and he finally started splashing the water with his
hands.
It was really great for all of us adults to get together and chat about
similarities and differences between our children. I also think it
really
helped the Tingley's. Remember their daughter, Carroline, is only 9
weeks
old. So, everything is brand new to them. Dori and Judy brought lots
of
pictures of their kids growing up.
We are talking about doing it again next year. We will probably be making
reservations in advance this time so more people can get involved without
worrying about a room or cabin.
I really recommend anyone interested get in touch with myself or Judy
Amerman.
Talk to you soon!!!
Laurie Bailey
jkb@elpaso.net
=========================================================================
Date: Tue, 28 Jul 1998
12:57:47 -0500
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
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From: Judy Amerman
<jamerman@UTI.COM>
Subject: Re: fabulous vacation
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Ditto to Laurie!
Yes, we all had a great time. Everyone got along real well and the
campground atmosphere was just what we all needed. Not only that, the
weather was definely on our side. (Just like Myrtle Beach was when
I hooked
up with Don, Cat and TeeHo)
Right before Laurie got to the campground, we took the kids fishing.
The
pond was stocked so well that the longest it took to get a nibble on
the
fishing line was probably 30 seconds max. The kids all get a fish but
the
moment to remember was when Seth caught his. When he realized
his fish was
about to be thrown back in, he got upset. He just couln't understand
that
theory. He wanted to keep it and eat it so that is what happened. Dori
was
holding on to the little thing and it was just flopping everwhere and
it
just about landed in the big pocket on her dress. We were all laughing
really hard. She and Seth took it back to the cottage where she got
it
ready for Seth to eat the following day. And ya know what. He ate the
whole
thing.
Nick and Seth have the same color of hair and several times when I thought
I was talking to Nick, it was really Seth. He must have wondered what
was
wrong with me.
It was a pleasure to see my little buddy Jacob again. He is sooooo cute.
He
knows Nick now after meeting him before and he kept saying Nii, Nii,
Nick
without the ck He is just too cute! And that baby sister of his is
just
adorable too. It won't be long before she is out of that punkin seat.
I met the Tingleys for the first time. Very nice people. I know
that they
are very concerned of the future for baby Caroline and I just hope
that
this eased alot of their concerns. Their daughter Taylor had the time
of
her life. I guess she cried after they left because she didn't want
her fun
weekend to end.
Needless to say, I was pretty beat by the time I got home. A weekend
of
fresh air just wiped me out.
I do agree with Laurie that this is a plan for next year. Maybe
though, we
can get a few more takers.
Judy
jamerman@uti.com
=========================================================================
Date: Tue, 28 Jul 1998
16:03:00 EDT
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
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Sender: Information exchange and
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From: Jennifer Graham
<Jenngram@AOL.COM>
Subject: Re: A Little Boy who Needs a
Family
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Wow..that Cesar is one Cutie Pie..dontcha think???
Jenn(Tampa/St. Pete)
=========================================================================
Date: Tue, 28 Jul 1998
16:54:12 -0400
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
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From: ROBIN L HILL
<CARMENRAE@PRODIGY.NET>
Subject: Re: A Little Boy who Needs a
Family
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Yes!!!!! My step-daughter (Amanda-10yrs) has been trying to talk
me into
adopting him all day! She said, "I know you could talk my dad
into it!!!"
OH MY!!!!!!
Robin Hill
----------
> From: Jennifer Graham <Jenngram@AOL.COM>
> To: APERT@LISTSERV.AOL.COM
> Subject: Re: A Little Boy who Needs a Family
> Date: Tuesday, July 28, 1998 4:03 PM
>
> Wow..that Cesar is one Cutie Pie..dontcha think???
>
> Jenn(Tampa/St. Pete)
=========================================================================
Date: Tue, 28 Jul 1998
16:52:53 -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: ROBIN L HILL
<CARMENRAE@PRODIGY.NET>
Subject: Re: fabulous vacation
MIME-Version: 1.0
Content-Type: text/plain; charset=ISO-8859-1
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I am JEALOUS!!!!!! Sure wish we could have made it to your Fabulous
Weekend! Maybe we could swing it next year! Glad to hear
you guys enjoyed
yourselves!
Robin
----------
> From: Judy Amerman <jamerman@UTI.COM>
> To: APERT@LISTSERV.AOL.COM
> Subject: Re: fabulous vacation
> Date: Tuesday, July 28, 1998 1:57 PM
>
> Ditto to Laurie!
>
> Yes, we all had a great time. Everyone got along real well and the
> campground atmosphere was just what we all needed. Not only that,
the
> weather was definely on our side. (Just like Myrtle Beach was when
I
hooked
> up with Don, Cat and TeeHo)
>
> Right before Laurie got to the campground, we took the kids fishing.
The
> pond was stocked so well that the longest it took to get a nibble
on the
> fishing line was probably 30 seconds max. The kids all get a fish
but the
> moment to remember was when Seth caught his. When he realized
his fish
was
> about to be thrown back in, he got upset. He just couln't understand
that
> theory. He wanted to keep it and eat it so that is what happened.
Dori
was
> holding on to the little thing and it was just flopping everwhere
and it
> just about landed in the big pocket on her dress. We were all laughing
> really hard. She and Seth took it back to the cottage where she got
it
> ready for Seth to eat the following day. And ya know what. He ate
the
whole
> thing.
>
> Nick and Seth have the same color of hair and several times when
I
thought
> I was talking to Nick, it was really Seth. He must have wondered
what was
> wrong with me.
>
> It was a pleasure to see my little buddy Jacob again. He is sooooo
cute.
He
> knows Nick now after meeting him before and he kept saying Nii, Nii,
Nick
> without the ck He is just too cute! And that baby sister of his is
just
> adorable too. It won't be long before she is out of that punkin seat.
>
> I met the Tingleys for the first time. Very nice people. I
know that
they
> are very concerned of the future for baby Caroline and I just hope
that
> this eased alot of their concerns. Their daughter Taylor had the
time of
> her life. I guess she cried after they left because she didn't want
her
fun
> weekend to end.
>
> Needless to say, I was pretty beat by the time I got home. A weekend
of
> fresh air just wiped me out.
> I do agree with Laurie that this is a plan for next year. Maybe
though,
we
> can get a few more takers.
>
> Judy
> jamerman@uti.com
=========================================================================
Date: Wed, 29 Jul 1998
14:07:27 +1200
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
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From: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: T&As
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The son of one of my workmates is going in for a tonsillectomy tomorrow and I mentioned the suggestion re using warm drinks instead of cold drinks and iceblocks. Apparently the reason they use cold fluids is to constrict the blood vessels and reduce the risk of bleeding, which apparently is a significant risk for some days postop.
Ann
NZ
=========================================================================
Date: Tue, 28 Jul 1998
23:27:36 EDT
Reply-To: Information exchange and Internet
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From: Belinda Vicars
<NephiRose@AOL.COM>
Subject: Sarah V.'s surgery
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Sarah V. and I just got back from Primary Children's (Utah) outpatient
surgery. She had her pinkie and index finger released on her
right hand. Her
left hand was already done when she was about four months old.
This time I
went to a different doctor and I am pleased with him. He wanted
to do
bilateral release but ran out of time and worried about Sarah being
under
anethesia too long so he settled for one hand this time. We were
there from
7am till 7pm. Whew...long recovery because Sarah kept vomiting
from the
anethesia. Glad to be home. (Smile) Glad she could have
the surgery even
though she had ear infection. Glad it's over with.
Cesar is such a cutie. I would LOVE to adopt him as he and Sarah
would only
be 2 days apart in age. Alas, our resourses are woefully scarce
now. I hope
a family will adopt him soon.
I saw on the list that I neglected to send the Ize family a picture
of Sarah
V. Sorry about that, I will get one out as soon as I can.
If there are any
other families that have not received a picture of my girl, let me
know. I'll
send you one.
Thanks, you-all, for sharing a part of yourself on this list serv.
On some
days, this is bout all that gets me through sane, heh. Goodnight.
Belinda