Diana,
We will pray for Derek and your family. I hope all goes smooth
and look
forward to hear how things went.
Good luck
Robyn J.
>
=========================================================================
Date: Wed, 29 Jul 1998
01:22:03 -0700
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From: Robyn Johnston
<robyn@ORDATA.COM>
Subject: Re: Pictures
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
I am also guilty!!! I have a few more pictures to get out to the
last 10
or so people on the list. My pile is almost ready, I just need
to address
and get a few more photos remade but I have been absolutely swamped.
I
have not forgotten but I am just slow. we are in the final stages
of
remodeling the house we bought and moving next week, even though it
is not
completely done. WE want to be moved before Brenna goes to surgery
(in 3
weeks) so I am scrambling! Arrggghh! I will do this in
the (hopefully
near) future - and the new people too!
Hugs
Robyn J
=========================================================================
Date: Wed, 29 Jul 1998
01:22:05 -0700
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From: Robyn Johnston
<robyn@ORDATA.COM>
Subject: Re: A Little Boy who Needs a
Family
Mime-Version: 1.0
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I agree, what a doll!
Robyn
=========================================================================
Date: Wed, 29 Jul 1998
08:30:38 EDT
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From: Jenny Brown <Firefli007@AOL.COM>
Subject: Re: Pictures
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hello
yes i too have not sent out pics. OOOOOPs
But i do really love the ones sent to me. Please be patient
with me!!! i
am getting copies done soon and should have them in the mail in a couple
o
weeks...
Thank you for sending out the complete address list...
Congrats on everybodys sucessful surgeries!!!
you all continue to be in my thoughts and prayers.
PS I am now the proud owner of a 1995 Honda accord with
no scrapes bruises
or bumps... now that all is settled with the car I can concentrate
on more
important things! (My little civic met a most untimely demise
on a wet
slippery road in the country a couple of weeks ago. No injuries,
just more
car insurance Yikes)
Peace & Luv!
Jenny in Georgia!
=========================================================================
Date: Wed, 29 Jul 1998
09:42:06 -0400
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From: ROBIN L HILL
<CARMENRAE@PRODIGY.NET>
Subject: Re: Sarah V.'s surgery
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Glad to hear Sarah is home from her hand surgery. She didn't have
to stay
in the hospital???? Is this common for hand surgeries?????
Just wondering
as we are getting geared up for Carmen's first soon! Take care
and hope
Sarah is doing well.
Robin
----------
> From: Belinda Vicars <NephiRose@AOL.COM>
> To: APERT@LISTSERV.AOL.COM
> Subject: Sarah V.'s surgery
> Date: Tuesday, July 28, 1998 11:27 PM
>
> 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
=========================================================================
Date: Wed, 29 Jul 1998
09:13:36 -0500
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From: "D. Jefferson"
<djeff@MIDWEST.NET>
Subject: Re: Great Vacation:
MIME-Version: 1.0
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Dear Friends:
Seth and I enjoyed getting to know the Amerman's, Bailey's and Tingley's.
Judy and Laurie have already given you the details, so I'll just add
that I
look forward to doing it again next year. Watching the children
interact
was fun. Taylor, Nick and Seth seemed to really enjoy each
others
company. They played hard and late. Seth came home exhausted.
Jacob had
a great time trying to keep up with the older children. Caroline
and
Jordan were the best natured babies, they didn't cry or fuss.
However,
they did get plenty of attention, so that may have been why they were
so
happy.
Thank you Judy and Laurie for making it happen. You couldn't have
picked a
more child friendly spot. The feel of camping out with all the
comforts of
home. A great time was had by all.
Hope more families can join us next year.
Warmly, Dori
Dori A. Jefferson
djeff@midwest.net
=========================================================================
Date: Wed, 29 Jul 1998
08:26:54 -0600
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From: baconsmith <bluenose@TELUSPLANET.NET>
Subject: school age kids -- taking meds
Mime-Version: 1.0
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Hello everyone. We've encountered a problem here that had me in
tears the
other night. EvaJessie's suture line (where the port for the
tissue
expander was put in) still hasn't healed from her June 10 surgery.
I
discovered this under a mass of matted hair and scab the other day.
All the
plastic surgeons associated witht he Children's hosp here are away
on
vacation, and the only person available is a doc who just wrote his
exams.
He put her on 10 days of keflex and that is when the trouble began.
you'd
think that a kid who can sit still and be so cooperative for an injection
would take meds no problem. But we had a right royal battle over
the first
dose; I ended up getting so bent that I finally held her down while
she was
screaming and crying and administered it by oral syringe. Then
I sent her
off to bed and went out for a drive. I didn't get far because
I was crying
so hard I had to stop the car.
It is still a battle over taking this stuff. I swear I would
stand on my
head and spit nickles if I could to get her to take these. i
am just about
worn out over this.
Any tricks of the trade would be welcomed.
Exasperated and tired in Calgary
pat and EvaJessie
email to: bluenose@telusplanet.net
IM: onlypeach
It's never too late to have a happy childhood. Tom Robbins (Still
Life With
Woodpecker)
=========================================================================
Date: Wed, 29 Jul 1998
10:41:01 +0000
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Comments: Authenticated sender is <jgibson2@POP.erols.com>
From: Judy Gibson <jgibson2@EROLS.COM>
Subject: Re: school age kids -- taking
meds
In-Reply-To: <98Jul29.082654-0600_mdt.268013-464+48@mail.telusplanet.net>
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Getting meds into kids can be a royal pain. My oldest
was
constantly on some antibiotic or other. First, I'd suggest that
you
taste the stuff yourself. If it's nasty, call the doc for a new
scrip -- no point fighting when there are so many different
antibiotics out there. Second, find out if it comes in a chewable
form (get the pharmacist to let you taste THAT before you fill the
scrip) and negotiate. I found that once Rob was old enough for
chewables, I got lots less resistance. Third possibility, can
she
swallow a relatively small capsule (keflex isn't very big in capsule
form). If she can, you may get past this problem altogether.
It's
worth paying a few dollars for a new scrip if it will avoid the
fight -- and Keflex isn't one of the more expensive antibiotics any
more.
Judy
> He put her on 10 days of keflex and that is when the trouble began.
you'd
> think that a kid who can sit still and be so cooperative for an injection
> would take meds no problem. But we had a right royal battle
over the first
> dose; I ended up getting so bent that I finally held her down while
she was
> screaming and crying and administered it by oral syringe. Then
I sent her
> off to bed and went out for a drive. I didn't get far because
I was crying
> so hard I had to stop the car.
>
> It is still a battle over taking this stuff. I swear
I would stand on my
> head and spit nickles if I could to get her to take these.
i am just about
> worn out over this.
=========================================================================
Date: Wed, 29 Jul 1998
10:51:15 +0000
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Comments: Authenticated sender is <jgibson2@POP.erols.com>
From: Judy Gibson <jgibson2@EROLS.COM>
Subject: Re: T&As
In-Reply-To: <199807290207.OAA12960@smtp1.ihug.co.nz>
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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.
>
This is true, but the effect isn't all that great (only
lasts for
a few minutes anyway). It's really more important to keep the back
of the throat moist than to keep it cold. HOT drinks are a very bad
idea, since they'd increase circulation -- and probably hurt.
Rob's
doc didn't have a problem with lukewarm drinks instead of cold -- of
course the other alternative was to wrestle with him (also a bad
idea post-op)
Judy
=========================================================================
Date: Wed, 29 Jul 1998
21:11:11 EDT
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From: Resa and Mark
Pace <Copperhd87@AOL.COM>
Subject: Re: school age kids -- taking
meds
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Pat--
I'm so sorry you had such a problem.
We've never had to take Keflex, so
I don't know if maybe it's some horrible, awful stuff that no one would
want
to take. Have you possibly tasted just a little of it to see
what the problem
might be.
EvaJessie is old enough that possibly trickery
or bribery might work.
Could you promise her that you really would stand on your head and
spit
nickles for her or some other ridiculous stunt that a 5 year old would
like to
see? Could she stay up late, eat ice cream in bed, etc. if she
took her meds?
I must confess we have at times resorted to some pretty odd things
to get our
older children to cooperate. Be sure to clap and jump up and
down and yell
"Hurrah!" when she does take her medicine.
Good luck!
Resa
=========================================================================
Date: Wed, 29 Jul 1998
22:34:39 -0700
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From: lisa mcgahan
<wmcgahan@IX.NETCOM.COM>
Subject: derek
MIME-Version: 1.0
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our thoughts and prayers are definitely with you. i wish we could
offer
you more than that. god will take care of derek. the mcgahans
=========================================================================
Date: Wed, 29 Jul 1998
22:56:56 EDT
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From: Belinda Vicars
<NephiRose@AOL.COM>
Subject: Re: Sarah V.'s surgery
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Robin, I'm not sure if it is common for kids to go home the same day
of hand
surgeries. This is only Sarah's second surgery. Sarah's
first hand surgery
was combined with some expansion surgery on her head. This time
around no
other surgery was needed, just the hand. Sarah is doing okay,
although she is
running a fever and doesn't have much of an appetite. That does
concern me.
However, I much prefer caring for her in my own home rather than
the
hospital.
Belinda
=========================================================================
Date: Wed, 29 Jul 1998
22:58:33 -0500
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From: "Allison's :
GO USA, Inc" <gousa@KC.NET>
Subject: A little boy who HAS a family
Mime-Version: 1.0
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Hi Everyone!
In regards to the sweetie-pie orphan boy in New Mexico with Apert syndrome:
Upon calling New Mexico to see how to start proceedings to bring Cesar
home
to a loving family, I found out he has already been placed in a home.
I do not know about you, but I will sleep better tonight knowing that
little Cesar has a family that will love him. (No pun intended on the
"Little Cesar")
This morning I showed a picture of Cesar to my son Shawn, and Shawn
recognized him. He shouted, "It's Shawn". They look so
much alike!
Best Wishes for everyone!
Mike Allison and Family
=========================================================================
Date: Thu, 30 Jul 1998
07:54:03 EDT
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From: Jennifer Graham
<Jenngram@AOL.COM>
Subject: Re: hand surgery
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I know wiht Jordans first surgery, which was the thumb and oinky releasal
of
the right hand we stayed overnight.....but there was some concern about
the
blood flow to the pinky...which was fine after a few hrs....but the
real
kicker was he was throwing up all over the place form the anesthesia.
I just
wasn't comfortable taking him home.
Second time around, the releasal of the thumb and pinky of the left
hand, we
stayed for about 4 hrs......again some concern about blood flow..which
was
fine.....Jordans doctor is a bit of a worrier (which is FINE by me),
but I
made sure they gave him some zofaran (anti-medic) BEFORE they woke
him up so
his nausea wasn't an issue. we took him home, but could have stayed
if we
wanted. As soon as we stepped foot out of the hospital he was ready
to
play...ALL SMILES!!!!! Even slept through the night w/ nothing more
than a
little advil.
After his first surgery he ran a slight fever about 48 hrs out..turned
out to
be nothing...gave him some Advil and it was gone by morning. This time,
I have
no idea what we'll do, but he is much happier at home in his own bed.The
docs
leave it up to us.Our real problem occurs about 5 days out when hes
feeling
better and works day and night ot get the bandages off..which he always
does....YUCK!!!!!!!!! ANd we end up ahving to change his dressing...or
rather
redress it period in the middle of the night. More than once I have
found him
sitting up in bed w/ his surgical hand in his mouth...bandages and
splint all
over his bed!!!! FUN STUFF!!!!!
Hope everyone is doing well..I have beeen bit of a lurker as Joe is
away for 2
mos. and I am the only on here....needless to say, I am exhausted...Jordan
is
quite the Mr. busybody......and w/ the dog I ffel like I have a toddler
and a
baby that I keep having to put in time-out...BOTH of them!!!!!
Jenn(Tampa/St. Pete)
=========================================================================
Date: Thu, 30 Jul 1998
13:12:17 +0000
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From: Information Services
<info_serv@CHILDRENCENTRE1.DEMON.CO.UK>
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
HELLO My name is Sobia Rana. I am 16 years old and I live in Nottingham
which is in England. I recently left Manning School for girls which
is in
Aspley Nottingham.In September I am going to college to study an Information
Technology course.In my free time I like reading, swimming and listening
to
music.i have a big house which is in Rise Park and I live with my Mum,
my
Dad,my three brothers and one sister.I am a Muslim which means I follow
the
religion of Islam and I am Asian but was born in England.
I am very pleased to be joining this website and I would very
much be
happy to speak to anyone on it.
=========================================================================
Date: Thu, 30 Jul 1998
07:44:51 -0700
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From: "Pulido, Laura"
<PulidoL@OR.CSMC.EDU>
Subject: Hello Sobia
MIME-Version: 1.0
Content-Type: text/plain
Hello Sobia,
Welcome to the group!
Do you have Apert Syndrome or a
craniofacial difference? I have a 2 1/2 year old daughter with
Apert
Syndrome. Her name is Martha Deanna Palacio. She is such
a smart
beautiful girl. Martha has a little brother, Eddie who is 1 year
and 4
months old and an older half-sister, 12 years old. Martha has
had four
surgeries total. Three on her hands, and one craniofacial.
There are
two other young ladies on this list who are about your age, Andrea
(20
years old) and Amanda (16 years old).
Again welcome!
Laura Pulido
Los Angeles, California
USA
=========================================================================
Date: Thu, 30 Jul 1998
10:12:07 -0600
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From: baconsmith <bluenose@TELUSPLANET.NET>
Subject: taking meds - update
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Thanks everyone for your notes, Judy and Resa and Dori and Robyn.
I know
better to choose the timing for introducing meds. My row with
EvaJessie was
in fact past her bedtime. We were both tired. I think
the stress is
getting to me. I hate to wish the summer away (it's so
short here), but i
can hardly wait for September and this final surgery. It seems
all along
the way, I've been playing catch up on this tissue expansion. Thought
I knew
what we were in for, and I did know, but I think I chose to ignore
it. Then
I am confronted with it and I fall apart all over again.
I was feeling pretty smug at how well things had gone -- I knew we had
to
hit the ground running with the injections, and we certainly did up
to a
couple of weeks ago. Then all the planning went haywire -- all
the doctors
went on holidays, so we lost the momentum of the injections, and to
top it
off I found this horrible-looking incision not healed.
I think I just hit a really low spot. Bad time to argue medicine
with a
5yo. (but then, anytime is a bad time to try and argue with a 5 yo,
cuz as
soon as you begin you've already lost!)
I want to also let you know tho, that your notes brought me back to
the
tried and true things that work with EvaJessie. Thank you.
This group is full of experience.
I did taste it -- it's cloyingly sweet. She says it smells bad
so she tries
to hold her nose. We talked about the NO OPTION situation, and
then allowed
her to choose how she wants it. I think she is convinced after
the other
night (I still feel just awful about that -- I lost my temper with
her when
I am supposed to be supporting her in this) that she can come
up with a
better way to take the meds than having it forced down her throat by
mommy.
So, we have over the past two days established a working truce.
And last
night she was so proud of herself because she took it and as she says
"didn't even have a problem!" I was proud too (but mostly
felt relief).
Doc says the incision is looking okay and we are cleared to swim next
week!
The thought of losing this tissue expander almost nauseates me.
But that
isn't gonna happen.
Well, thank you again for responding to my panic.
Pat and EvaJessie
email to: bluenose@telusplanet.net
IM: onlypeach
It's never too late to have a happy childhood. Tom Robbins (Still
Life With
Woodpecker)
=========================================================================
Date: Thu, 30 Jul 1998
11:45:21 -0700
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From: Amanda / Cathy
Curtis <cam@CNW.COM>
Subject: Greetings!
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
Content-Transfer-Encoding: 7bit
Hello-
My name is Amanda! It is good to see more people
joining the list serve.
To All Of You!!!!!!
Tomorrow- July 31st is my Birthday!
I wil Be 17!!!!!!!!!!
Bye!
Amanda
S-W, Washington
-----Original Message-----
From: Information Services <info_serv@CHILDRENCENTRE1.DEMON.CO.UK>
To: APERT@LISTSERV.AOL.COM <APERT@LISTSERV.AOL.COM>
Date: Thursday, July 30, 1998 6:24 AM
>HELLO My name is Sobia Rana. I am 16 years old and I live in Nottingham
>which is in England. I recently left Manning School for girls which
is in
>Aspley Nottingham.In September I am going to college to study an
Information
>Technology course.In my free time I like reading, swimming and listening
to
>music.i have a big house which is in Rise Park and I live with my
Mum, my
>Dad,my three brothers and one sister.I am a Muslim which means I follow
the
>religion of Islam and I am Asian but was born in England.
> I am very pleased to be joining this website and I would very
much be
>happy to speak to anyone on it.
>
=========================================================================
Date: Thu, 30 Jul 1998
16:48:56 EDT
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From: Janine Krebs
<Yonstein@AOL.COM>
Subject: Re: taking meds - update
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Glad to hear that things are getting better, the incision healing and
the meds
being taken much better. By the time I got to write back to you,
you have
things well under control.
Of course the thought of losing the tissue expanders would make you
sick.
It's been a very long process for all of you, with more time to go.
Wishing you both a speedy September.
Janine
=========================================================================
Date: Thu, 30 Jul 1998
16:49:50 EDT
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From: Janine Krebs
<Yonstein@AOL.COM>
Subject: Re: Greetings!
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HAPPY BIRTHDAY AMANDA.
HAPPY BIRTHDAY TO YOU
HAPPY BIRTHDAY TO YOU
HAPPY BIRTHDAY AMANDA
HAPPY BIRTHDAY TO YOU
ENJOY YOUR DAY
Janine Krebs
=========================================================================
Date: Thu, 30 Jul 1998
18:15:45 EDT
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From: Jennifer Graham
<Jenngram@AOL.COM>
Subject: Re: Greetings!
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HAPPY #17 Amanda........enjoy your day...man time flies, I can remeber
my 17th
b-day like it was yesterday!!!!!
Jenn(Tampa/St. Pete)
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Date: Thu, 30 Jul 1998
19:04:27 +0000
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safe haven for Apert Syndrome
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Comments: Authenticated sender is <jgibson2@POP.erols.com>
From: Judy Gibson <jgibson2@EROLS.COM>
Subject: Re: taking meds - update
In-Reply-To: <98Jul30.101216-0600_mdt.268094-9950+46@mail.telusplanet.net>
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I'm so glad that things are looking better. You're so right about
not battling with tired kiddos -- becomes a no-win, especially if
you're tired. One other thing that helped Rob until he learned
to
swallow pills -- saying YUCK!! as loud as possible after taking the
nasty stuff.
Judy
> Doc says the incision is looking okay and we are cleared to swim next
week!
> The thought of losing this tissue expander almost nauseates me.
But that
> isn't gonna happen.
>
>
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Date: Thu, 30 Jul 1998
18:05:44 -0700
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From: Thomas Troudt
<ttroudt@SPRYNET.COM>
Subject: Derek's surgery cancelled
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Wouldn't you know it?? The night before Derek's Craniofacial reconstruction
surgery he spikes a temperature of 102. Took him down to the
hospital in
Denver anyways and they said it was a no go. We don't have it
rescheduled
yet but will let everyone know when it is. I hope it is soon.
It is hard
to psych yourself up for it and then to have it postponed is a killer.
Talk
to you all again soon.
Diana Troudt in Greeley Colorado
=========================================================================
Date: Thu, 30 Jul 1998
20:58:44 -0500
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From: Laurie Bailey
<jkb@ELPASO.NET>
Subject: Re: taking meds - update
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----------
> From: baconsmith <bluenose@TELUSPLANET.NET>
> To: APERT@LISTSERV.AOL.COM
> Subject: taking meds - update
> Date: Thursday, July 30, 1998 11:12 AM
>>
> Doc says the incision is looking okay and we are cleared to swim
next
week!
> The thought of losing this tissue expander almost nauseates me.
But that
> isn't gonna happen.
>
> Well, thank you again for responding to my panic.
> Pat and EvaJessie
> email to: bluenose@telusplanet.net
> IM: onlypeach
> It's never too late to have a happy childhood. Tom Robbins
(Still Life
With
> Woodpecker)
Hey!
I know the feeling of not wanting to lose an expander. After Jacob's
first
set, we really had to baby his hands because they were really bruised
and
had large blood blisters on them. But, everything came out fine and
his
third set looks wonderful. We are taking things slowly with this set
because he has scarring from the previous pinky release that we didn't
have
to deal with before. I'll keep you guys posted.
Laurie Bailey
jkb@elpaso.net
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Date: Fri, 31 Jul 1998
00:46:41 -0700
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From: Robyn Johnston
<robyn@ORDATA.COM>
Subject: Re: taking meds - update
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PAt,
Glad to hear things are going better. Stress and lack of sleep
can reak
havok on one! Glad to hear EvaJessie is doing so well with her
meds now!
Have fun at the 'water hole' next week!
Hugs to you both,
Robyn J
=========================================================================
Date: Fri, 31 Jul 1998
08:35:03 EDT
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From: Jenny Brown <Firefli007@AOL.COM>
Subject: Welcome sobia
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HelloSobia!
Welcome to the family. I was in England in June on Holiday!
My Mom is from
somerset, near Glastonbury and we visited some of her relatives there!
Jenny in Savannah
PS This weekend i'm doing my pictures to get out to everybody.
Wishing
everyone continued speedy recoveries from all the surgeries.
=========================================================================
Date: Fri, 31 Jul 1998
08:05:50 -0600
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From: baconsmith <bluenose@TELUSPLANET.NET>
Subject: Re: Derek's surgery cancelled
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Wow, Diana, that's hard to hear isn't it? We get all psyched up
and boom,
the rug is pulled from beneath us. It really gives a person that
surreal
feeling -- this can't really be happening, can it?
We had EvaJessie's orbital surgery cancelled on us last July.
The hopsital
didn't have any ICU beds available to recover her in. We showed
up at the
hosp at 6 a m and by 7:30 we were leaving because surgery was
cancelled. I
couldn't believe it happened.
Hope you get a new surgery date soon. I can just imagine that you are
anxious to have this done.
Keep us posted.
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, 31 Jul 1998
10:56:08 EDT
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From: Jenny Brown <Firefli007@AOL.COM>
Subject: Re: Greetings!
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Happy 17 Amanda.... Hope your day is full of good things and eat some
cake for
me!!!!
jenny (Georgia)
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Date: Fri, 31 Jul 1998
10:02:26 -0500
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From: Judy Amerman
<jamerman@UTI.COM>
Subject: Fw: introducing Nick
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Hello and good morning,
After the Lake Shelbyville weekend and meeting the Tingldys with their
suspicions that baby Caroline may be hydro. I decided to get on the
internet and pull up hydrocephalus. And what a surprise a got.
Nick has had a shunt now for 8 years and no problems and I guess I
have
really taken the hydro for granted. I decided to sign on to a hydro
listserv and am really getting my eyes open to "Nick's secondary birth
defect"
I introduced Nick and asked if at anytime shunts are no longer necessary.
Below is just one of the responses that I got back. I am sending this
out
with the permission of Liz.
I am also going to send out a copy of a letter about a man who designed
a
shunt valve for his son.
If anyone else feels the need to investigate this further like me.
Just go
to http://www.neurosurgery.mgh.harvard.edu/hyceph-l.htm
Good luck,
Judy
jamerman@uti.com
----------
> From: Liz Welker <ahead@riconnect.com>
> To: Judy Amermanowner-hyceph-l@listserv.utoronto.ca
<jamerman@UTI.COMowner-hyceph-l@listserv.utoronto.ca>
> Subject: Re: introducing Nick
> Date: Thursday, July 30, 1998 6:27 AM
>
> Welcome, Judy and Nick! I know you will find this list to be of
> support and comfort to you. I have been here nearly three years and
> consider members to be family.
> I'm very happy to hear Nick has not had any problems with hydro
> since infancy! Awesome! He could do better than I have, which, I'll
> admit, is quite good.
> I'm LIZ. I'm 31 and was dx'ed with hydro in infancy. I've had
six
> shunt surgeries, but 5 were during my first four years (along with
a
> shunt infection), and I've had *no* shunt problems for nearly 18
> years! This shunt has even survived my two pregnancies and a fall
on
> the valve in college. I'm a college grad, wife, and mom of two
> awesome kids. In spite of some occasional setbacks (a few seizures,
> some learning disabilities, the shunt infection, minor motor issues),
> my life is normal. I'm also learning about special needs parenting
> since my son was dx'ed with mild autism last year.
> I want to caution you about hydro. It has a way of very suddenly
> causing problems. After almost ten years of no problems at all, I
> needed an emergency revision. Hydro is a chronic condition that
> requires coping throughout life, and at 8, I was doing wonderfully
in
> school. My learning disabilities were not discovered until I was
> 20. I'm sure Nick will continue to do well, but report *anything*
> unusual to the n-surg, especially since you have not experienced
a
> revision of the shunt. Classic signs include nausea, vomitting,
> lethargy, vision disturbance, severe headache, and incoherence.
> As far as arrest, yes, it does happen, but it is very rare,
and
> there is no way of determining whether it will be permanent or not.
> We have members who arrested, and then the hydro re-activated and
was
> even worse than before. I would rather have a shunt with no problems
> for nearly twenty years than arrest, frankly.
> Please let us know if we can help you with any other questions.
> That's why we're here!
>
>
LIZ in RI
> LIZ in RI, 31 yo mom and educated layman with
> hydrocephalus since birth, shunted at 4 weeks
> old, five subsequent surgeries, and NONE in
> 17 3/4 years!! Also Mommy to Caren, 7,
> going on 40; and Drew, 4, a beautiful
> little boy with PDD (mild autism); and wife
> to Don, my "other kid."
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Date: Fri, 31 Jul 1998
10:08:49 -0500
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From: Judy Amerman
<jamerman@UTI.COM>
Subject: Fw: John Holter Story
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Here is the story I said I would send.
Just click on below a and read about something pretty incredible
Judy
----------
> From: Chris Riccio <CARiccio@AOL.COM>
> To: Multiple recipients of list HYCEPH-L <HYCEPH-L@listserv.utoronto.ca>
> Subject: John Holter Story
> Date: Tuesday, July 28, 1998 9:01 PM
>
> http://www.net-ez.com/biomedical/hltrstry.htm
>
> I am posting this story many of us are already familiar with for
the
benefit
> of the newer members and also to reinforce how far treatment for
hydrocephalus
> has come in just over 40 years.
>
> Imagine how hopeless the Holter family must have felt- and we think
we
feel
> alone!
>
> This truly is an amazing story of strength, courage, and determination.
>
> Chris Riccio
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Date: Fri, 31 Jul 1998
12:29:28 -0600
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From: baconsmith <bluenose@TELUSPLANET.NET>
Subject: Laurie Bailey
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Laurie, glad to hear Jacob's tissue expanders are looking good.
Keep us
posted. How long is this for you? Until September?
Pat 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, 31 Jul 1998
20:24:45 -0400
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From: Jack and Raquel
<jara1@BELLSOUTH.NET>
Subject: Derek's surgery cancelled
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Oh boy Diana.....Do we know how you feel. Our daughter Nicole's
cranial
surgery (first surgery at that) was cancelled four times, yes you heard
it right four times. All I can tell you is hang in there and
stay
focused. We found that after all those cancellations it only
made us
stronger. When the day finally came and believe me it will, we
were so
tired and so used to having it cancelled that we were basically taken
by
surprise when it was actually a go. The surgery is now behind
us and
all went well and she is doing just great. Now we have to get
ready to
start her hand surgeries (somehow those don't make me as nervous)
although surgery is surgery and we still must have our concerns.
Hang in there we will be praying for you and you'll see soon it will
happen it will be over and you can then relax a bit.....
Take care...
Raquel Miller.....