Hi Everybody! Max here, Iam soo it excited about coming to the
beach! I
just got through looking at the Crown Reef Resort pages Wow it's a
neat
place. In 3 days my sister and I will be there. I won't be bringing
the
california tan look though. I don't tan I burn because of my fair skin.
Iam
just started packing.
Welcome to the family Paul. My name is Maxine. My friends here and at
home
call me Max. Iam 45 years old( Yes everybody I turned 45!! years young
this
last Thruday!) and I have Aperts. Iam happily married and have a normal
15
year old whose going to give me gray hair before I should or I'll go
bald
because I feel like pulling it out at times. This is a great place
to meet
friends, and find answers to your questions. It's helped me alot! If
you
want to ask me question just E-mail me here or privately I'll be happy
to
answers any questions that you have.
Ruth what a proud day it must have been for you and for Kris on
her
Quinceanera, I think that everytime a person with Aperts goes through
a
special time in their life and they do it in front of friends and family,
it
is a great accomplishment. Because it's letting this world know that
we(Aperts) or a group to be heard! Way to go Kris!! I'll be praying
for you
on your up comming surgery!
Lisa, I'll be praying for little Samatha and for you! I am sure Samatha
will
be back to herself with that big smile and all the love she can give
you
before you know it. We're a tuff group. You just get plenty of rest
and when
it's all over(the surgery) take a day off and do something for yourself.
Joanne, Iam glad that things are working out for you. I hope you'll
be back
to yourself in know time.
Andrea, So glad to hear that your surgery went so well, I am sure you;ll
like the results when you get your stiches out. See your cat wasn't
sure it
was you, so there must of been a big change!
Raquel I got your pictures of Nicole she's a cutie. Thank you so much.
I'll
try and get some pictures made. I had some put on a disk but when I
went to
print them out, my face turn red along with my daughters. I am bringing
the
pictures to the get togather and maybe Don can print them up for me(which
I'll pay for) then when I'll get them out I'll send them to everybody!
My
picture album for Aperts is looking great. It's so neat to see how
we all
look alike and how all the babys look like me when I was at that age!
I also
want you to let those new familys know that they can write me at my
home
address at: 1404 DelMar Ave. Modesto, Calif. 95350 or E-mail me at:
rreed@cableone.net. I'll be happy to answer any questions that they
have. or
they can call me at (209)524-2141 any time pacific time. That also
goes for
everybody how wants to ask me questions. I;ll be happy to ask your
questions.
Way to go Tim on getting your drivers permit and for being in the play;
Amazing Technicolor Dreamcoat. Thats so great! Thanks Beth for sharing
your
joys.
A big belated Happy birthday to Carlee and to Courtney!
I hope Zoey is feeling better?
Well I hope this finds everybody is doing well!!I'll see you
beach bunnies
SOON CAN'T WAIT in sunny Calif. Max
=========================================================================
Date: Mon, 7 Jun 1999
22:38:01 -0700
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From: rreed <rreed@CABLEONE.NET>
Subject: Hi Patty and Denise
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Hi Patty, Max here from the same place your from, Where abouts in Calif.
are
you? or did I ask you that before? So glad to hear that Jasmyn did
so well
through the surgery. I'll be praying that she has a speedy recovery
and that
you get some rest.
Denise, Glad to hear that Daryl tendon transplant went so well and he's
healing great too!
=========================================================================
Date: Tue, 8 Jun 1999
21:01:23 +1200
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From: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: New births - You asked for it!
Mime-Version: 1.0
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Hi Brenda
>Where did you get the info re US births at 1 in 60,000?
We originally got that figure of 1:60,000 from a booklet by Jeffrey Fearon "A Guide to Understanding Apert Syndrome", published by the Children's Craniofacial Association, Dallas Texas - it goes back a few years. As a matter of interest, and to demonstrate the difficulty in getting accurate figures, a flip through our files brings out these figures (I have put the ratio at the end of each sector):
Clinics in Plastic Surgery 1991 - Joseph Upton ("Classification and Pathologic Anatomy of Limb Anomalies" p321) states acrocephalosyndactyly is estimated to occur once in every 160,000 to 200,000 live births.
However -
"Birth prevalence study of the Apert Syndrome"
MM Cohen jr et al
Am-J-Med-Genet.1992 Mar 1; 42(5): 655-0
Birth prevalence of the Apert syndrome was calculated to be approximately
15.5/1,000,000 births, which is twice the rate determined in earlier studies.
The major reason appears to be incomplete ascertainment in the earlier
studies. ... Apert syndrome accounts for about 4.5% of all cases of craniosynostosis.
15.5/1,000,000 works out at 1:64,516
but the same year he published this information -
"New indirect method for estimating the birth prevalence of the Apert
Syndrome:
MM Cohen jr and S Kreiborg
Int-J-Oral-Maxillofac-Surg. 1992 Apr; 21(2):107-9
Apert syndrome makes up approximately 4% of all cases of craniosynostosis.
Using a weighted average estimate, birth prevalence was calculated to be
13.7/1,000,000.
which works out at 1:72,993
and more recently the papers report -
"Exclusive paternal origin of new mutations in Apert syndrome
DM Moloney et al
Nat-Genet.1996 May; 13(1):48-53
The frequency of new mutations, estimated as 1 per 65,000 live births.....
"Birth Prevalence, Mutation Rate, Sex Ratio, parents' Age, and Ethnicity
in Apert Syndrome"
Marie M. Tolarova et al
American Journal of Medical Genetics 72:394-398 (1997)
Birth prevalence ... was 12.4 cases per million live births...
which works out at 1:80,645
So you can see there is no clear-cut answer. But these figures are widely different from the 1:160,00 we were originally told, which appears to still be used in publications from the UK.
Hope this helps.
Regards
Ann
NZ
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Date: Tue, 8 Jun 1999
21:01:31 +1200
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From: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: Re: APERT Digest - 3 Jun 1999
to 4 Jun 1999 (#1999-154)
Mime-Version: 1.0
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Hi Patti, Jasmyn and family
Great to hear Jasmyn's surgery went well.
All the best
Ann,Howard and Amy
NZ
=========================================================================
Date: Tue, 8 Jun 1999
21:01:29 +1200
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From: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: Re: I'M HOME
Mime-Version: 1.0
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Welcome Home Andrea
Great to hear you are home and generally in good spirits. This is where all those hand mirrors will come in handy to try and get a clear image of the results! All the best for the stitch removal tomorrow.
And I suppose the moment you sit down Bear is there for a cuddle.
Take care
Ann, Howard and Amy
NZ
=========================================================================
Date: Tue, 8 Jun 1999
12:54:24 -0400
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Comments: RFC822 error: <W> Incorrect or
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ignored.
From: Andrea Gartner
<agartner@PEGANET.NET>
Subject: Re: Daryl's tendon transplant
MIME-Version: 1.0
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Way to go Daryl!
I'm glad to hear things are going well :>)
I hope the left thumb is a great success too.
-Andrea
=========================================================================
Date: Tue, 8 Jun 1999
14:51:03 -0400
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From: Andrea Gartner
<agartner@PEGANET.NET>
Subject: Re: APERT Digest - 3 Jun 1999
to 4 Jun 1999 (#1999-154)
MIME-Version: 1.0
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Hi Patti,
I'm glad to hear that Jasmyn had a successful midface. She sounds
like
she's getting better quickly. :>) I was in ICU for 3 days
too. However, I
need 7 pints during surgery and 2 after.
She'll be in my thoughts and prayers. I hope she recovers as
quickly as I
am.
-Andrea
=========================================================================
Date: Tue, 8 Jun 1999
16:44:55 -0400
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From: Don Sears <dsears@SCRS.STATE.SC.US>
Subject: Maxine's page is out!!!
MIME-Version: 1.0
Content-Type: text/plain
At long last (sorry about the delay Max!) you can read maxine's story
-
please check it out, it is really inspiring.
http://www.apert.org/reed
=========================================================================
Date: Tue, 8 Jun 1999
19:09:24 EDT
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From: BBarn60368@AOL.COM
Subject: Misc.
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Hello all:
So glad you are home, Andrea and doing so well. Can't wait to see the
"new
you"!
To all those bound for Myrtle...Have fun and please do plan to make
it an
annual event. We came so close to going this year, and would
love another
chance to go in the future. We will be thinking of all of you,....
with
envy, of course.
Does anyone know if the Clubhouse still exists? Don?? I
have not been able
to access any pictures there since about March. Am I doing something
wrong
or have the pictures been removed?
Also, I have another question: Does anyone else have trouble with
Impetigo?
Shirley has had reoccurrence of impetigo on her face since she was
about a
year old. (She will be 6 tomorrow.) I always thought it
might have
something to do with the fact that her nose ran constantly the first
3-4
years of her life, but she still gets it from time to time even though
her
nose doesn't run any more.
Much love to you all and may you recognize that God is with you always,
Alice in Orlando, Fl.
=========================================================================
Date: Tue, 8 Jun 1999
20:11:37 EDT
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From: Marilyn Williams
<Mbwill43@AOL.COM>
Subject: Re: I'M HOME
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DEAR ANDREA, GIRL IT SURE IS NICE TO SEE YOU BACK, WE ALL MISSED YOU.
I'M SO
GLAD YOU'RE DOING SO GOOD. WISH YOU COULD GO TO MYRTLE BEACH BUT KNOW
IT'S
OUT OF THE QUESTION THIS YEAR. PLEASE SEND ME A PICTURE OF YOUR
SELF WHEN
YOU GET ALL HEALED UP I CAN'T WAIT TO SEE YOUR PRETTY FACE. YOU TAKE
CARE AND
KEEP US UP TO DATE. YOUR FRIEND MARILYN
=========================================================================
Date: Tue, 8 Jun 1999
20:22:34 EDT
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From: Marilyn Williams
<Mbwill43@AOL.COM>
Subject: Re: (no subject)
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HI SANDRA, MY NAME'S MARILYN AND I HAVE A 1 YEAR OLD GRANDDAUGHTER WITH
APERTS,SHE WILL HAVE MID FACE DONE ACCORDING TO HER DR. AT BETWEEN
3YRS OLD
AND 5 YRS OLD UNLESS SHE NEEDS IT SOONER, SO WHO CAN SAY. I GUESS EVERY
CHILD
IS DIFFERENT. DON'T LURK SO MUCH AND WRITE MORE AND LET US KNOW HOW
YOUR SON
IS DOING. MARILYN (GRANNY TO CARLEE)
=========================================================================
Date: Tue, 8 Jun 1999
20:27:00 EDT
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From: GSieb91515@AOL.COM
Subject: Re: Count Down
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Judy,
Thanks for the forecast. I'm working on the laundry to get ready
for packing
on Thurs. We will be getting in sometime around 4 or 5 on Fri.
We will be
looking for you and the rest of the gang. I'm really getting
excited now and
know that we are all going to have a great time. Wish we could
stay longer
than our 4 days but we'll be grateful for the time we do have.
See ya there.
Brenda
=========================================================================
Date: Tue, 8 Jun 1999
20:48:14 EDT
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From: GSieb91515@AOL.COM
Subject: Re: Misc.
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HAPPY 6TH BIRTHDAY TO SHIRLEY! Hope you have a fantastic day.
We will be
thinking of you.
Also, a belated happy birthday to Max. We will be able to have
a belated
celebration in person at the beach.
Brenda
P.S. I hope I haven't missed any recent birthdays. But if
so, please know
that we wish you the best also.
=========================================================================
Date: Wed, 9 Jun 1999
10:01:15 EDT
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From: Marilyn Williams
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Subject: Re: Daryl's tendon transplant
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SO HAPPY EVERY THING IS GOING WELL !!!!!!MARILYN
=========================================================================
Date: Wed, 9 Jun 1999
10:02:14 EDT
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From: Marilyn Williams
<Mbwill43@AOL.COM>
Subject: Re: APERT Digest - 3 Jun 1999
to 4 Jun 1999 (#1999-154)
MIME-Version: 1.0
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HI PATTIE SO GLAD THINGS ARE GOING WELL. MARILYN
=========================================================================
Date: Wed, 9 Jun 1999
10:20:44 EDT
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From: Marilyn Williams
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Subject: Re: Misc.
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DEAR ALICE, MY OLDEST DAUGHTER GOT IT A COUPLE YRS. IN A ROW WHEN WE
LIVED IN
MELBOURNE,FL AND THE DR. SAID CUT HER NAILS SHORT, AND BATHHER IN DIAL
SOAP,
PLUS HE GAVE HER MED. FOR INFECTION. BUT WE USED DIAL THEN ALL THE
TIME UNTIL
THE KIDS GOT GROWN AND WE STILL DO SOME TIMES. MARILYN IN BOSTWICK,FL
=========================================================================
Date: Wed, 9 Jun 1999
09:42:49 -0700
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From: rreed <rreed@CABLEONE.NET>
Subject: A VERY HAPPY BIRTHDAY TO SHIRLEY
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Hi Alice and Shirley, A very Happy Happy Birthday to Shirley. Hope you
have
a great Birthday. Wishing you many more. Love Max from Sunny Calif.
Alice
you have a stress free day too!
=========================================================================
Date: Wed, 9 Jun 1999
12:56:40 -0400
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From: ROBIN L HILL
<CARMENRAE@PRODIGY.NET>
Subject: 1st Impressions - Minnie
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Hi everyone, this Mike
I have a funny story that has kept me laughing all morning. Robin,
Carmen
Rae and I met the Amermanns at the Atlanta airport today. Liz
was there
also. The Amermanns were enroute to Myrtle Beach.
This was our first time meeting in person and you always want to make
a
good impression. Of course, I personally was not concerned as
I have been
marked as a "character" by Judy and Cathie Sears. Of course this
is a
conspiracy as I am the most polite person you could meet (right Cat).
Anyway, the Amermanns arrived and we all extended our greetings.
Judy was
dressed in her fancy dancy Tommy Hilfiger bib overall shorts.
As we walked
down the terminal I looked toward Judy and noticed some sort of tag
hanging
off her shorts. I mentioned it to her and we came to realize
that the tag
was the price tag. Poor Judy, of all the people to notice.
She will never
live it down and from this day forward be known as Minnie (Minnie Pearl
Wanna Be). Those of you going to the beach, when you meet Judy,
don't
mention the tag, just say hi Minnie, she will know what you mean.
We had a great time and Nick is a great young man. He is Mr. Personality.
See those of you going to Myrtle, this weekend
=========================================================================
Date: Wed, 9 Jun 1999
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From: Liz Saylan <LSaylan@AOL.COM>
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Hello everyone!
To those of you going to
Myrtle Beach Have Fun! I wish I was coming,
but I promise I will be there next year. I just wanted to add my two
cents to
what Mike had to say about Judy call her Minnie when u meet her!!!
I really
enjoyed spending time with The Amermanns, The Hills. We took pictures
so as
soon as I get mine developed I will send them to Don so he can share
them
with all of you.
I am leaving tomorrow for
Toronto, so I wont be back in touch with
any of you until I get back. I will be gone 10 days, will come into
chat that
Sunday night that I get in. Have a Great Weekend!!!!!
Liz Saylan
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Date: Wed, 9 Jun 1999
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From: Irmocat2@AOL.COM
Subject: Re: 1st Impressions - Minnie
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Hi Mike, I just loved that story and it couldn't have happened to a
nicer
woman!!! When I talked to her last week, she was so proud of
those Tommy
Overalls and couldn't wait to wear them. I am planning on calling
"Minnie"
tonight to make sure she made it to the beach and you know I am going
to kid
her about that! I can't wait to meet everyone, too. Why
don't you all just
come on Saturday instead of Sunday?? Well, it will just give
me one more day
without you to think of some good comebacks to your strange sense of
humor!!
Liz, I hope you have fun in Toronto and maybe you can make it to the
beach
with us next year along with everyone else. I am glad you got
a chance to
meet the Amermans. Judy is a great girl, even though I give her
heck most of
the time.
I can hardly wait till tomorrow, I am just like a kid. I think
I am more
excited than Teeter. All she knows is that we are going to the
pool and the
beach, but she is not all hyper like me. I told Teeter that she
is going to
have to give Nick a kiss when we get to the beach and she is OK with
that,
but poor ol' Nick keeps saying no way and yuck!!
See you all at the beach.........
Love,
Cathie
=========================================================================
Date: Wed, 9 Jun 1999
15:56:31 -0400
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From: Don Sears <dsears@SCRS.STATE.SC.US>
Subject: Re: clubhouse help
Comments: To: Apert Mail <apertmail@uswest.net>
MIME-Version: 1.0
Content-Type: text/plain
The clubhouse address is still valid, there's just nothing there right
now. I was in the process of moving everyone's clubhouse pictures
to
their own individual pages and got sidetracked. We will post
vacation
pictures to there this coming week as they happen.
The picture exchange address is:
http://www.apert.org/pictures/addresses
Don
-----Original Message-----
From: Apert Mail [mailto:apertmail@uswest.net]
Sent: Sunday, June 06, 1999 1:05 AM
To: catndon@apert.org
Subject: clubhouse help
Hi ya Don, Dawn here.....
when I click on the link for the clubhouse, it never comes up I get
a
pink page, I think thats the color... anyway I have never seen
it.
and where is the list of names for the picture exchange??
just need a little help... =)
thanks...
How are you guys doing?
well for the most part we are all doing good here. The kids are great,
getting so big!!
It is kind of hard with John not being here, but I am trying my best
:) I can't wait for him to get home.
I sure miss talking with you guys, Thank you so much for the
pictures
of Teeter she is sooo big!
Courtney's are coming soon!
Hugs to all
Dawn
=========================================================================
Date: Wed, 9 Jun 1999
18:36:26 EDT
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From: Patbrat718@AOL.COM
Subject: Re: APERT Digest - 6 Jun 1999
to 7 Jun 1999 (#1999-157)
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Thanks all for the good wishes. Jasmyn is home now. She has picked
up quite
a wheeze from the respirator, very surprised they let her go.
She is still
very weak, but very glad to be in her own bed :). We begin turning
the
screws on her device next week, but already there is a diffrence due
to some
bone removal they had to do. When we get the distractor device
off, I will
have Don update her page with before, during and after photos.
Andrea, glad to hear your home, you sound like your feeling pretty good!
JoAnne, been keeping on eye on your e-mails, give yourself a big hug
from us
(Jasmyn gives the best hugs :) )
Patti
=========================================================================
Date: Wed, 9 Jun 1999
20:19:19 EDT
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LIZ HAVE A SAFE TRIP TALK TO YOU IN A FEW DAYS. MARILYN
=========================================================================
Date: Wed, 9 Jun 1999
21:27:53 EDT
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From: Cristy Williams
<CARLEE0604@AOL.COM>
Subject: Re: I'M HOME
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Andrea,
So glad to hear that you are home and recovering. I can't wait to get
your
pictures. We are leaving for Myrtle Beach this Friday. I hope
the rest of
your recovery is speedy. You are and have been in my thoughts and prayers.
Cristy
in Florida
=========================================================================
Date: Wed, 9 Jun 1999
21:36:05 EDT
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From: Cristy Williams
<CARLEE0604@AOL.COM>
Subject: Re: APERT Digest - 3 Jun 1999
to 4 Jun 1999 (#1999-154)
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Patty,
So glad to hear Jasmyn is doing great after surgery. Keep us informed.
We
will keep her in our prayers.
Cristy and Carlee
in Florida
=========================================================================
Date: Wed, 9 Jun 1999
21:49:25 EDT
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From: Cristy Williams
<CARLEE0604@AOL.COM>
Subject: Re: Misc.
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HAPPY 6TH BIRTDAY SHIRLEY!!!!!!!!!!
Cristy
in Florida (Orange Park)
=========================================================================
Date: Wed, 9 Jun 1999
22:35:20 EDT
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From: Sheila MacDonald
<SMacdo1030@AOL.COM>
Subject: Re: Upcoming Boston area get-together
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Hi Jeanne,
Sorry I have not been able to write sooner but, I've been so busy with
doctor's appointments....I'm sure you can understand that. I
would love to
attend you Boston get-together....I will be at the Cape that weekend
but, I'm
hoping that I will be back in time to join the fun. Could you
write back and
let me know what I can bring? Thank you for carrying on this
tradition.
Sheila
=========================================================================
Date: Wed, 9 Jun 1999
22:50:55 -0400
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From: Greg and Sherry
Roehl <gnsroehl@FLASH.NET>
Subject: Hello
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Hi. We've been lurking for some time now, and finally have a moment
to
introduce ourselves. We're Sherry and Greg Roehl. Our son,
Kieran
Patrick, was born 3/17/99 with Apert's. He has two big sisters
that
adore him, Bailey (7) and Laney (4). We live in Mt. Clemens,
Michigan -
about 20 miles from Detroit. We currently see doctors in the
Henry Ford
System, but do have a 2nd opinion scheduled for the 14th with Dr. Ian
Jackson, and a third opinion with Dr. Steven Buchman at the University
of Michigan's Craniofacial Center on June 17th.
We had hoped to introduce ourselves sooner, but hospital stays made
it
impossible. After birth, Kieran was in the NICU for 12 days.
Then, he
had RSV and was in the PICU for 10 days. This was followed by
3
additional PICU stays (5 days, 4 days, 6 days) for apnea/cyanotic
episodes. While in for the RSV, he was diagnosed with reflux,
which the
doctors originally thought to be the culprit for the cyanosis.
We
didn't agree, but had no way to prove it. However, during our
last stay
they finally captured an episode on an EEG, and he was diagnosed with
a
seizure disorder.
We haven't previously read anything indicating that seizures were common
with Apert's. Are they? He started taking Phenobarbital
two weeks ago,
and hopefully we'll be able to spend some time at home. We knew
that we
faced many hospital visits, but we had thought we would have more time
before they began.
We've scheduled Kieran's first surgery for June 30th to release the
coronal sutures. His Neurosurgeon, Dr. Henry Bartkowski, is planning
on
removing his entire forehead, leaving a large soft spot which will
apparently fill in with new bone in about 3-4 months. He is also
going
to use some of the bone he removes to advance Kieran's orbits.
We may
also have the pinkie fingers released at the same time to reduce the
number of times he has to be put under. We meet with the plastic
surgeon on the 21st to finalize the hand surgery. (Of course,
all this
depends on the information we get from our second and third opinions;
we
may be canceling the surgery and going a completely different route.)
Are there any other families in our area that can recommend doctors
and
share their experiences with them? It's so hard to trust that
we're
getting the best possible care for our son when we have to take the
doctor's word for things.
Any advice for dealing with HMO's would be appreciated. Has anyone
had
experience getting care at facilities outside of their designated health
care system? If so, how did you go about it?
Also, we've never had anyone sit down and tell us what to expect for
the
future as far as how many surgeries we can expect and when. We're
not
very happy about that, but we're not sure who we should look to for
this
information. Any advice?
I'm sure we'll have many more questions in the future. Thank goodness
we
found this list serve! It seems to be a very helpful and supportive
resource, and we look forward to getting to know all of you better.
Thanks for any help and experience you can share!
Sherry, Greg, Bailey, Laney & Kieran (12 weeks w/Apert's)
=========================================================================
Date: Thu, 10 Jun 1999
03:37:27 -0500
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From: PAUL UHRIG <p.uhrig@WORLDNET.ATT.NET>
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hopeto see you when you come up from houston how is everybody
-----Original Message-----
From: GSieb91515@AOL.COM <GSieb91515@AOL.COM>
To: APERT@LISTSERV.AOL.COM <APERT@LISTSERV.AOL.COM>
Date: Friday, June 04, 1999 8:05 PM
>Paul-
>
>Hi! This is Brenda Siebert in Houston. We met you in medical
city when
our
>son Jonathan had his cranial vault surgery with Dr. Salyer.
We are so glad
>you finally decided to join our listserver. We think of you
often and hope
>that you are still doing great. Are you still working in the
ICU? Let us
>know what's new in your life. We will be in Dallas for an MRI
and visit
with
>Dr. S. on June 21 and 22nd.
>
>Take Care--
>Brenda (Hi from the rest of the gang)
=========================================================================
Date: Thu, 10 Jun 1999
03:39:25 -0500
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From: PAUL UHRIG <p.uhrig@WORLDNET.ATT.NET>
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hpoe to see you when you come up from houston
-----Original Message-----
From: GSieb91515@AOL.COM <GSieb91515@AOL.COM>
To: APERT@LISTSERV.AOL.COM <APERT@LISTSERV.AOL.COM>
Date: Friday, June 04, 1999 8:05 PM
>Paul-
>
>Hi! This is Brenda Siebert in Houston. We met you in medical
city when
our
>son Jonathan had his cranial vault surgery with Dr. Salyer.
We are so glad
>you finally decided to join our listserver. We think of you
often and hope
>that you are still doing great. Are you still working in the
ICU? Let us
>know what's new in your life. We will be in Dallas for an MRI
and visit
with
>Dr. S. on June 21 and 22nd.
>
>Take Care--
>Brenda (Hi from the rest of the gang)
=========================================================================
Date: Thu, 10 Jun 1999
10:27:25 -0500
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From: Carbide Tech
<ruth@CARBIDETECH.COM>
Subject: Kris' Big Day!
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Hello Everyone!
Ruth Contreras here, Mom to Kris....Guys, Let me just tell you
that you
should have been there!!!
Kris' Quinceanera was awesome!!! Kris looked absoulutely beautiful!!!
I
was so proud of her!!! She was abundle of nerves and during a
video of her
life...she just could not stop crying!!!!.......I kept telling her..."kris,
stop crying...your'e messing up your make-up!!...she would answer
"Mom, I
can't stop crying!!!" Anyway, the Minister told the congregation
that now
we all looked like raccoons..with all of our mascara running..ha!
After all of her "Padrinos" (sponsors of ring, bible, last doll,
etc.)
came in...her 14 attendants walked in (14..to represent 14 yrs.
of her
life) and then she came down this lighted up elevator...everyone said
she
looked like an Angel coming down!
My nephew who is a singing sensation (Brenda Siebert can testify
to that)
sang "You are so beautiful" to Kris and then read a poem that my sister
and
him had come up with for the ocassion...everything was just beautiful...The
minister was right..we did look like racoons!!
My greatest compliment came from my friends and family who all told
us that
everything was so beautiful...
To make things extra special..our friends...Jonathan Siebert,
Sarah LeCara
and Kimberly Belsley and parents were there with Kris to celebrate
..(And
Kimberly's grandparents, too!) That meant alot to us!!
Thanks, guys...we
love you!!!!
I promise...I promise....that I will send pictures so that you guys
can
see!!!
Adios, Mis amigos!1
Ruth Contreras
=========================================================================
Date: Thu, 10 Jun 1999
08:52:52 -0700
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From: "Wittenburg,
Mark" <Mark_Wittenburg@TEMPE.GOV>
Subject: Hello
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
Hello Greg and Sherry Roehl,
We are Mark and Kathy of Phoenix Arizona. Reading your post brought
back
memories of Jackie Lynn's birth (she is now 3 1/2). She also
had
apnea/cyanotic episodes during her ICU stay. We were in the process
of
checking out of the hospital when she just looked into my wife's eyes
and
stopped breathing. The doctors also diagnosed her with seizures
and put her
on Phenobarbital, however, to this day we think they were guessing.
Needless to say, we didn't get much sleep when we did take her home
since
she was on a heart monitor. First time at two AM that thing went
off
because of a loose lead the entire family couldn't sleep!
She never had another episode after she was place on Phenobarb.
The dosage
was kept the same, weaning her slowly off by age two because of her
weight
gain.
=============================================
Mark Wittenburg Technical
Services Supervisor
City of Tempe
http://www.tempe.gov
602-350-8237
markwi@tempe.gov
=========================================================================
Date: Thu, 10 Jun 1999
12:38:36 -0400
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From: Joni Stephens
<athsteph@ACS.EKU.EDU>
Organization: Eastern Kentucky University
Subject: Re: Hello
MIME-version: 1.0
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Content-transfer-encoding: 7bit
Hi!
Just wanted to introduce
myself. I am Joni Stephens and am the mother
of Joseph, my six-year-old son with Aperts. Unfortunately, I
am not
from the Michigan area, so I don't have any advice about doctors around
there. But I do urge you to find a pediatrician that can facilitate
Kieran's appointments and interventions. We have been very fortunate
to
have our plastic surgeon do a lot of that for us when Joseph was born;
he was the one who made sure we saw the right doctors and had the right
tests and procedures done. Our pediatrician does that now.
If you
don't, it can be very frustrating, because specialists have a tendency
to only see the problems concerning their medical area and often don't
look at the child as the "whole" child.
Joseph had his forehead
rebuilt and eye sockets formed when he was 6
months old. The skull does indeed grow back; our neurosurgeon
told us
that in infants, they could remove the entire skull and it would grow
back!! Pretty amazing. He also was in the NICU because of breathing
difficulties (sleep apnea/collapsed lung), and has had his share of
respiratory illnesses, including RSV.
He is doing great now.
Next year he starts first grade, and has done
very well in pre-school and kindergarten. I encourage you to
find an
early intervention program for Kieran where he can get OT, PT, and
speech therapy from 1-3 years of age. What a difference that
made in my
Joseph. He went from not being able to sit up by himself at 1
year of
age to walking by 2 years of age.
I would also be interested
in finding out how people get medical help
outside their registered area. We have been for a second opinion
twice,
but the insurance wouldn't pay for much of the second visit (to a
completely different doctor for a different problem). Let me
know what
you find out.
Good luck with Kieran's
first surgery. We will be thinking about and
praying for him and your family. Just remember, as difficult
as these
surgeries are, they are for the best and the children get over them
faster than we do. (They are courageous and strong kids.)
Joni and Pat Stephens
Parents of Joseph, 6; Ben, 15; Daniel,17
=========================================================================
Date: Thu, 10 Jun 1999
17:06:10 EDT
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From: Marilyn Williams
<Mbwill43@AOL.COM>
Subject: Re: Hello
MIME-Version: 1.0
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Dear SHERRY, WELCOME TO THE FAMILY HOPE ALL GOES WELL WITH THE DR.
APPOINTMENTS. I'M JUST CARLEE'S GRANDMA, BUT I'M SURE HER MOM WILL
BE WRITING
TO YOU AS SOON AS WE GET BACK FOR AMEETING IN MYRTLE BEACH THIS WK.
WITH SOME
OF THE PEOPLE THAT ARE ON THE ListServ, INCLUDING THE COUPLE THAT STARTED
IT,
CATHIE AND DON SEARS. TALK TO YOU LATER. MARILYN
=========================================================================
Date: Thu, 10 Jun 1999
17:10:24 EDT
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From: Marilyn Williams
<Mbwill43@AOL.COM>
Subject: Re: Kris' Big Day!
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SO GLAD KRIS HAD A WONDERFUL DAY IT SOUNDS LIKE WE ALL MISSED A REAL
TREAT.
PLEASE SEND PICTURES THAT WE CAN SEE. THANKS MARILYN
=========================================================================
Date: Thu, 10 Jun 1999
19:05:42 -0400
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From: Jack and Raquel
<jara1@BELLSOUTH.NET>
Subject: Re: Would you like to meet in
July?
MIME-Version: 1.0
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boundary="------------72534D6C780C24072F8FB7AC"
--------------72534D6C780C24072F8FB7AC
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Andrea,
I think that sounds like a great idea.....do me a favor as the time
aproaches send us a quick e-mail to remind us, so that way I can take
off early that day from work and meet you over at Miami Childrens if
that would still be the meeting place.
Is your neurosurgeon Dr. Ragheb?? Or is it Dr. Morrison or none
of the
above?? Nicole's neurosurgeon is Dr. Ragheb and we love him....Any
way
we are getting ready for our drive down to Myrtle Beach, so I will
let
you go for now....But remember give us a reminder as the time approaches
and of course if it gets cancelled let us know also...
Take Care
Raquel...
Sorry everyone I had to send this e-mail to the listserv somehow
my
e-mail wouldn't go through to Andrea's...
Andrea Gartner wrote:
> Hi Jack & Raquel, I had a appointment with the neurosurgeon
on June
> 16th. But it has been canceled.The new date is for July 7th
at
> 12:15. I was glad this happened because it might give us a
better
> chance of meeting.If your available maybe at 2, I'd love to meet
you
> guys. Much Love,Andrea
>
>
>
--------------72534D6C780C24072F8FB7AC
Content-Type: text/html; charset=us-ascii
Content-Transfer-Encoding: 7bit
<HTML>
<BODY BGCOLOR="#FFFFFF">
Andrea,
<BR>I think that sounds like a great idea.....do me a favor as the
time
aproaches send us a quick e-mail to remind us, so that way I can take
off
early that day from work and meet you over at Miami Childrens if that
would
still be the meeting place.
<P>Is your neurosurgeon Dr. Ragheb?? Or is it Dr. Morrison
or none
of the above?? Nicole's neurosurgeon is Dr. Ragheb and we
love him....Any
way we are getting ready for our drive down to Myrtle Beach, so I will
let you go for now....But remember give us a reminder as the time approaches
and of course if it gets cancelled let us know also...
<P>Take Care
<P>Raquel...
<P>Sorry everyone I had to send this e-mail to the listserv
somehow
my e-mail wouldn't go through to Andrea's...
<P>Andrea Gartner wrote:
<BLOCKQUOTE TYPE=CITE> <FONT COLOR="#000000"><FONT
SIZE=-1>Hi Jack
& Raquel,</FONT></FONT> <FONT SIZE=-1>I had a appointment
with the
neurosurgeon on June 16th. But it has been canceled.The new
date
is for July 7th at 12:15. I was glad this happened because
it might
give us a better chance of meeting.If your available maybe at 2, I'd
love
to meet you guys.</FONT> <FONT SIZE=-1><FONT COLOR="#000000">Much
Love,</FONT>Andrea</FONT>
<BLOCKQUOTE
style="BORDER-LEFT: #000000 solid 2px; MARGIN-LEFT: 5px; PADDING-LEFT:
5px"> </BLOCKQUOTE>
</BLOCKQUOTE>
</BODY>
</HTML>
--------------72534D6C780C24072F8FB7AC--
=========================================================================
Date: Thu, 10 Jun 1999
20:20:12 -0500
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From: "Allison's: GO
USA, Inc" <gousa@GOUSAINC.COM>
Subject: Re: Kris' Big Day!
In-Reply-To: <19990610152830850.AAA193@208.128.2.1.nww.net>
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Congratulations Kris!
That is the most incredible Quinceanera I have ever heard about.
It must
have been a spectacular event.
Good Job!
Mike Allison and family
=========================================================================
Date: Thu, 10 Jun 1999
23:01:17 -0400
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From: Greg and Sherry
Roehl <gnsroehl@FLASH.NET>
Subject: Re: Hello
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Mark,
Thanks for sharing your experience with seizures. So far the Phenobarbital
is
working. Hooray!! We were able to get the okay to get rid
of the apnea monitor
today, but will keep the pulse oximeter for a while longer. The
apnea monitor
never went off anyway, so it will be nice to have one less piece of
equipment to
lug around!
The loose lead alarms never really bother us because we became so accustomed
to
them in the ICU that we know not to panic when the alarm goes off.
It can jolt
us, but it's not too bad.
Sherry Roehl - mom to Kieran, 12 weeks
"Wittenburg, Mark" wrote:
> Hello Greg and Sherry Roehl,
>
> We are Mark and Kathy of Phoenix Arizona. Reading your post
brought back
> memories of Jackie Lynn's birth (she is now 3 1/2). She also
had
> apnea/cyanotic episodes during her ICU stay. We were in the
process of
> checking out of the hospital when she just looked into my wife's
eyes and
> stopped breathing. The doctors also diagnosed her with seizures
and put her
> on Phenobarbital, however, to this day we think they were guessing.
> Needless to say, we didn't get much sleep when we did take her home
since
> she was on a heart monitor. First time at two AM that thing
went off
> because of a loose lead the entire family couldn't sleep!
>
> She never had another episode after she was place on Phenobarb.
The dosage
> was kept the same, weaning her slowly off by age two because of her
weight
> gain.
>
> =============================================
> Mark Wittenburg Technical
Services Supervisor
> City of Tempe
http://www.tempe.gov
> 602-350-8237
markwi@tempe.gov
=========================================================================
Date: Fri, 11 Jun 1999
01:08:33 -0400
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From: Greg and Sherry
Roehl <gnsroehl@FLASH.NET>
Subject: Referrals & Early Intervention
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Hi Joni,
We do have a wonderful pediatrician that is willing to write referrals
for anyone
we wish to see. Unfortunately, they aren't always approved by
the managed care
dept. of our health care system. Also, she has offered to be
our care
coordinator, but I don't think she's familiar enough with Apert's to
always know
who we need to see when. But, she seems very willing to learn!
:-)
We have applied and been approved for early intervention services
through our
school district. Since it's the end of the school year, he'll
only get one or two
visits until fall, when he'll get them more regularly. However,
he was
recommended for our hospital's Multidisciplinary Care Clinic today.
It is also an
early intervention program and they claim to help facilitate &
coordinate care
between specialists as well. So, between the 2 programs, Kieran
should get all
the therapy he needs even over the summer. I wish getting all
of his care were
that simple!
I know exactly what you mean about specialists seeing Kieran as an individual
body
part, instead of a whole. Right now we're having a really hard
time with that.
The lack of communication and cooperation between specialists has been
awful so
far.
As soon as we get any helpful information about getting care outside
of a
designated health care system covered by our HMO, we'll be sure to
share.
Sherry Roehl - mom to Kieran-12 wks w/Apert's, Laney-4 w/CVS & Bailey-7
Joni Stephens wrote:
> Hi!
> Just wanted to introduce
myself. I am Joni Stephens and am the mother
> of Joseph, my six-year-old son with Aperts. Unfortunately,
I am not
> from the Michigan area, so I don't have any advice about doctors
around
> there. But I do urge you to find a pediatrician that can facilitate
> Kieran's appointments and interventions. We have been very
fortunate to
> have our plastic surgeon do a lot of that for us when Joseph was
born;
> he was the one who made sure we saw the right doctors and had the
right
> tests and procedures done. Our pediatrician does that now.
If you
> don't, it can be very frustrating, because specialists have a tendency
> to only see the problems concerning their medical area and often
don't
> look at the child as the "whole" child.
> Joseph had his forehead
rebuilt and eye sockets formed when he was 6
> months old. The skull does indeed grow back; our neurosurgeon
told us
> that in infants, they could remove the entire skull and it would
grow
> back!! Pretty amazing. He also was in the NICU because of breathing
> difficulties (sleep apnea/collapsed lung), and has had his share
of
> respiratory illnesses, including RSV.
> He is doing great
now. Next year he starts first grade, and has done
> very well in pre-school and kindergarten. I encourage you to
find an
> early intervention program for Kieran where he can get OT, PT, and
> speech therapy from 1-3 years of age. What a difference that
made in my
> Joseph. He went from not being able to sit up by himself at
1 year of
> age to walking by 2 years of age.
> I would also be interested
in finding out how people get medical help
> outside their registered area. We have been for a second opinion
twice,
> but the insurance wouldn't pay for much of the second visit (to a
> completely different doctor for a different problem). Let me
know what
> you find out.
> Good luck with Kieran's
first surgery. We will be thinking about and
> praying for him and your family. Just remember, as difficult
as these
> surgeries are, they are for the best and the children get over them
> faster than we do. (They are courageous and strong kids.)
>
>
Joni and Pat Stephens
>
Parents of Joseph, 6; Ben, 15; Daniel,17
=========================================================================
Date: Fri, 11 Jun 1999
01:18:49 -0400
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From: Greg and Sherry
Roehl <gnsroehl@FLASH.NET>
Subject: Grandmas
MIME-Version: 1.0
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Dear Marilyn,
Thanks for your well wishes. Please remember that there's no such
thing as "just
a grandma!" The love and support of grandparents is an important
and wonderful
thing!
Sherry Roehl - mom to Kieran-12 wks w/Apert's, Laney-4 w/CVS & Bailey-7
Marilyn Williams wrote:
> Dear SHERRY, WELCOME TO THE FAMILY HOPE ALL GOES WELL WITH THE DR.
> APPOINTMENTS. I'M JUST CARLEE'S GRANDMA, BUT I'M SURE HER MOM WILL
BE WRITING
> TO YOU AS SOON AS WE GET BACK FOR AMEETING IN MYRTLE BEACH THIS WK.
WITH SOME
> OF THE PEOPLE THAT ARE ON THE ListServ, INCLUDING THE COUPLE THAT
STARTED IT,
> CATHIE AND DON SEARS. TALK TO YOU LATER. MARILYN
=========================================================================
Date: Fri, 11 Jun 1999
02:10:04 -0400
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From: Greg and Sherry
Roehl <gnsroehl@FLASH.NET>
Subject: prenatal diagnosis
MIME-Version: 1.0
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A couple of people asked me if we knew that Kieran would have problems
before birth, and I forgot to answer them. I did have polyhydramnios
(excessive amniotic fluid), so we expected him to have swallowing or
other GI problems, which he doesn't. I did have 4 ultrasounds,
none of
which indicated the Apert's. I'm curious, do they ever pick up
Apert's
through prenatal testing?
Also, since many people are unsure of the pronunciation of our
children's names, I'll try to sound them out for everyone. [it
always
bothers me when I'm unsure of how to pronounce a name I read :-) ]
Kieran (k ear in) 12 week old son with Apert's
Laney (lay knee) 4 yo daughter with Cyclic Vomiting Syndrome
Bailey (bay lee) 7 yo daughter
Sherry Roehl - proud mom of the above!
=========================================================================
Date: Fri, 11 Jun 1999
22:16:07 +1200
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From: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: Re: Kris' Big Day!
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
It sounds just wonderful Ruth. What an amazing day and what beautiful memories you will all have.
Hugs
Ann
NZ
=========================================================================
Date: Fri, 11 Jun 1999
22:16:04 +1200
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From: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: Re: APERT Digest - 6 Jun 1999
to 7 Jun 1999 (#1999-157)
Mime-Version: 1.0
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Hi Pattie
All the best to you and Jasmyn. "Our" local family are very pleased with the distraction procedure on their son and he is breathing and sleeping much better.
Hugs
Ann
NZ
=========================================================================
Date: Fri, 11 Jun 1999
08:40:21 -0400
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From: Amy <AIRVIN@COLUMBUS.RR.COM>
Subject: Dr. Bartkowski/ Greg and Sherry
MIME-Version: 1.0
Content-Type: multipart/alternative;
boundary="----=_NextPart_000_0004_01BEB3E6.0A8FD180"
This is a multi-part message in MIME format.
------=_NextPart_000_0004_01BEB3E6.0A8FD180
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charset="iso-8859-1"
Content-Transfer-Encoding: quoted-printable
Dear Greg and Sherry,
I am Amy Irvin from Columbus, Ohio. I have a 9 year old =
son named Alex with Apert. Dr. Bartkowski was here in Columbus at our
=
Children's Hospital until fairly recently (it may be a couple of years
=
now). Our neurosurgeon was a partner of his and I know that both of
them =
trained with some of the best neurosurgeons in the world. He had a
=
wonderful reputation around here and from what I hear is missed terribly
=
by patients and staff. He has alot of experience with kids with =
craniofacial anomalies and had a good bedside manner from what I hear.As
=
neurosurgeons go you can rest assured that you will be in good hands.
=
Good Luck with your decisions. They are not easy.
Amy Irvin
------=_NextPart_000_0004_01BEB3E6.0A8FD180
Content-Type: text/html;
charset="iso-8859-1"
Content-Transfer-Encoding: quoted-printable
<!DOCTYPE HTML PUBLIC "-//W3C//DTD W3 HTML//EN">
<HTML>
<HEAD>
<META content=3Dtext/html;charset=3Diso-8859-1 =
http-equiv=3DContent-Type>
<META content=3D'"MSHTML 4.72.3110.7"' name=3DGENERATOR>
</HEAD>
<BODY bgColor=3D#ffffff>
<DIV><FONT color=3D#000000 size=3D2>Dear Greg and Sherry,</FONT></DIV>
<DIV><FONT color=3D#000000=20
size=3D2> &nbs=
p; =20
I am Amy Irvin from Columbus, Ohio. I have a 9 year old son named Alex
=
with=20
Apert. Dr. Bartkowski was here in Columbus at our Children's Hospital
=
until=20
fairly recently (it may be a couple of years now). Our neurosurgeon
was =
a=20
partner of his and I know that both of them trained with some of the
=
best=20
neurosurgeons in the world. He had a wonderful reputation around here
=
and from=20
what I hear is missed terribly by patients and staff. He has alot of
=
experience=20
with kids with craniofacial anomalies and had a good bedside manner
from =
what I=20
hear.As neurosurgeons go you can rest assured that you will be in good
=
hands.=20
Good Luck with your decisions. They are not easy.</FONT></DIV>
<DIV><FONT color=3D#000000=20
size=3D2> &nbs=
p;  =
; =
&=
nbsp; =20
Amy Irvin</FONT></DIV></BODY></HTML>
------=_NextPart_000_0004_01BEB3E6.0A8FD180--
=========================================================================
Date: Fri, 11 Jun 1999
13:20:32 EDT
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From: AOL User <Munch35738@AOL.COM>
Subject: Re: Welcome Home Andrea
MIME-Version: 1.0
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Raquel, send some of your rain to the north end of Florida. Mary
=========================================================================
Date: Fri, 11 Jun 1999
14:54:45 EDT
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From: "(Marianne Camous)"
<Camous@AOL.COM>
Subject: Re: prenatal diagnosis
Comments: To: Greg and Sherry Roehl <gnsroehl@flash.net>
MIME-Version: 1.0
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We had prenatal DNA diagnosis. There is an article in a genetics journal-
As
far as we know it was the first prenatal dx coinfirmed by DNA probe.
I also
had polyhydramnios and on ultrasound at about 30 weeks, they picked
up
abnmormal finger motion due to syndactyly. After an exhaustive US study,
the6y also noted skull anomalies and Apert was the presumptive dx,
later
confirmed by amnio.
Marianne Camous
Evan Milburn's mom- age 2 1/2
San Carlos, CA
=========================================================================
Date: Fri, 11 Jun 1999
16:00:50 -0400
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From: Ryan Bradley
<Bradleys_r@COMPUSERVE.COM>
Subject: Hello
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Welcome to the listserv Roehl family.
There is a lot going through your minds right now and it will be busy
for a
while with surgeries, but our advice is take it one day at a time and
trust
that God will take it of Kieran.
Our daughter Michelle is 8 years old and doing great, we are a little
busy
now since we just had twin girls on April 29 so will try to give advice
as
often as we can.
God bless you and your little one.
The Bradley's
=========================================================================
Date: Fri, 11 Jun 1999
17:25:38 -0400
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Comments: RFC822 error: <W> Incorrect or
incomplete address field found and
ignored.
From: Andrea Gartner
<agartner@PEGANET.NET>
Subject: Re: Grandmas
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
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"The love and support of grandparents is an important and wonderful
thing!"
I agree. I hope other Apert kids have wonderful grandmas like
Marilyn
Williams, who get involved in their grandkids life.
Mine were there, but not like she is.
Andrea
-----Original Message-----
From: Greg and Sherry Roehl <gnsroehl@FLASH.NET>
To: APERT@LISTSERV.AOL.COM <APERT@LISTSERV.AOL.COM>
Date: Friday, June 11, 1999 1:22 AM
Subject: Grandmas
>Dear Marilyn,
>
>Thanks for your well wishes. Please remember that there's no
such thing as
"just
>a grandma!" The love and support of grandparents is an important
and
wonderful
>thing!
>
>Sherry Roehl - mom to Kieran-12 wks w/Apert's, Laney-4 w/CVS &
Bailey-7
>
>Marilyn Williams wrote:
>
>> Dear SHERRY, WELCOME TO THE FAMILY HOPE ALL GOES WELL WITH THE DR.
>> APPOINTMENTS. I'M JUST CARLEE'S GRANDMA, BUT I'M SURE HER MOM WILL
BE
WRITING
>> TO YOU AS SOON AS WE GET BACK FOR AMEETING IN MYRTLE BEACH THIS
WK. WITH
SOME
>> OF THE PEOPLE THAT ARE ON THE ListServ, INCLUDING THE COUPLE THAT
STARTED
IT,
>> CATHIE AND DON SEARS. TALK TO YOU LATER. MARILYN
>
=========================================================================
Date: Fri, 11 Jun 1999
19:32:02 -0400
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From: ROBIN L HILL
<CARMENRAE@PRODIGY.NET>
Subject: Seth's pictures
MIME-Version: 1.0
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Hi Dori. Just wanted to let you know we got Seth's pictures yesterday
and
all I can say is, "WOW!" He looks great! I can't believe
how different
the before and after shots are. Can you tell me again the procedure
Seth
had. It will be awhile before Carmen needs any mid-face procedures,
but I
am definitely curious about Seth's procedure. Take care.
Robin Hill
=========================================================================
Date: Fri, 11 Jun 1999
21:33:56 -0500
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From: "Allison's: GO
USA, Inc" <gousa@GOUSAINC.COM>
Subject: Re: Seth's pictures - Robin
In-Reply-To: <199906112331.TAA225434@vm4-ext.prodigy.net>
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Hi Robin!
We saw Seth in person not long ago. He does look Great!
Mike Allison
=========================================================================
Date: Sat, 12 Jun 1999
00:27:33 -0400
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From: Greg and Sherry
Roehl <gnsroehl@FLASH.NET>
Subject: Congratulations!
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Congratulations on the new additions to your family!
Sherry Roehl - mom to Kieran-12wks w/Apert's, Laney-4 w/CVS & Bailey-7
Ryan Bradley wrote:
> Welcome to the listserv Roehl family.
>
> There is a lot going through your minds right now and it will be
busy for a
> while with surgeries, but our advice is take it one day at a time
and trust
> that God will take it of Kieran.
> Our daughter Michelle is 8 years old and doing great, we are a little
busy
> now since we just had twin girls on April 29 so will try to give
advice as
> often as we can.
>
> God bless you and your little one.
>
> The Bradley's
=========================================================================
Date: Sat, 12 Jun 1999
10:33:18 EDT
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From: Dana White <Danabrger@AOL.COM>
Subject: Managed care
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Hi everybody,
Sorry I have not wrote in a while--I've been lurking!!!
I wanted to offer a possibility regarding managed care and getting things
covered. Through my work at Frazier, I have received referrals
on two
occassions from special needs case managers who were following children
for
their complete medical care. Both of these case managers worked
for HMO's
and had the capacity to authorize referrals (even outside of the HMO
network)
and treatment. The good part about that is, each time you need
a referral
made or an authorization, there was just one person to call.
This person is
someone that knows your child and their past medical history so you
don't
have to start from scratch each time. Both of these case managers
had met
the families and even went to some doctor's appointments with them.
I
believe this type of case management is rare but would be worth looking
into.
The plans that I worked with were Humana and Passport (Kentucky
Medicaid
HMO). I guess the flipside to that is (there is always a flipside!!)
if you
were assigned a special needs case manager, they would need to be a
"yes"
person and not a "no" person.
I wanted to thank Ruth Contreras (hope I spelled that right) regarding
some
updated information regarding genetics and pre-implantation testing.
I
called the office of Dr. Carlos Bacino in Galveston, TX. I spoke
with a
genetics counselor, Noel Eggen--she was very nice. I told her
my situation
and interest in pre-implantation testing. She spoke with Dr.
Bacino and
called me back. She says they have been able to identify where
the apert
mutation occurs in some people by doing blood work. (Apparently
they cannot
always identify when the mutation occurs.) Using the blood work,
they can
determine if they will be able to identify affected vs. non-affected
eggs to
separate. Dr. Bacino reportedly does not know of any Apert's
cases involved
in pre-implantation testing but felt that was related to the rarity
of the
request. According to Noel, he encouraged me to contact the Reproductive
Genetics Institute in Chicago, IL (713) 296-7095 as they advertise
willingness to develop testing procedures. Noel guessed the cost
would be
about $2,000 for the testing. I have not contacted them yet,
but did discuss
with my PCP who is going to call me with a name of a local geneticist
who
could give me some updated info and maybe get the blood work done locally.
Well, that is where I am at with my quest. Thanks to the info
from Ruth I
have hope that I could have my own children. John and I are likely
going to
try this next summer. I am a very practical person (my husband
calls me a
pessimist) and did not set my hopes too high. We will be blessed
with
children however they come into our lives. I'll keep you updated
as I learn
more.
To all of the families in Myrtle Beach or on their way, have a safe
and fun
trip!!
As always, the Apert's families are in my thoughts and prayers.
Dana White
Louisville, KY
=========================================================================
Date: Sun, 13 Jun 1999
06:06:12 EDT
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From: Sandra Jones
<AJones7692@AOL.COM>
Subject: (no subject)
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Hi All
Thanks for all the replys , Richard is 10yrs old, he is well adjusted
little
boy , he attends normal mainstream school, which is a small village
school
there are only 75 pupils.
Our only worry at the moment is that next year he gets to go to the
big
school , if he will be happy there. Richard is due to have his midface
surgery when he is 11yr-12yrs old. To date he has had 2 head surgerys
and 2
hand operations.
Aperts is not very well know about over here, I only now off 2 in Wales,
Richard was originally diagnosed as having Crouzons (it was the only
condition the local doctors knew about ) . They sent us to the children
hospitail who then said it was Aperts/ Phieffiers.
Sorry I have'nt replyed to all the Emails seperatly , I had 800 email
on file
so i tried to erase some and delated all . (i'm new to computors).
Well better be of for now , lokk forward to hearing for you all,
Sandra <Andrew and Boys.
=========================================================================
Date: Sun, 13 Jun 1999
06:07:48 EDT
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From: Sandra Jones
<AJones7692@AOL.COM>
Subject: Re: (no subject)
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Please excuse all my mistakes.
sandra
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Date: Sun, 13 Jun 1999
12:23:36 -0400
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From: Greg and Sherry
Roehl <gnsroehl@FLASH.NET>
Subject: Welcome
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Please don't worry about any mistakes. We all make them. :-)
I hope this list serve will help to answer some of the questions you
might have.
Sherry Roehl - mom to Kieran-12 wks w/Apert's, Laney-4 w/CVS & Bailey-7
Sandra Jones wrote:
> Please excuse all my mistakes.
> sandra
=========================================================================
Date: Sun, 13 Jun 1999
17:34:54 -0500
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From: "R. Fletcher"
<taz26@CONCENTRIC.NET>
Subject: Various
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Hello all,
I hope everyone
at Myrtle Beach is having a great time.
Hopefully next year I will be able to join you.
Brenda: I believe
you asked about getting the toes separated.
Mine haven't been and I have no problems. I do have the problems
everyone else has with finding shoes that fit perfectly. I usually
have
to go with a wide width. But they do seem to fit better than most.
Usually I have to go with slip on tennis shoes instead of ones that
tie.
I found those to fit better, too.
Beth: Congratulations
on Tim going to the prom. Also don't
worry about him driving. I have been driving for 9 years and I have
had
no problems. It wasn't hard at all for me to learn.
Bob:
I have had problems to with Acne on my scalp, but
haven't yet found anything to help it. For the face I have found most
Nuetraguea(sp?) products are great.
Especially the soap.
To everyone else good
luck with surgeries that are coming up
and to those who are recovering. You are in my prayers.
To new families, my
name is Rachel. I am 25 with Apert's. I
have already been through what some of you are just starting to go
through. If you have any questions,
please feel free to email me. I am not on the picture exchange this
year, but as soon as things get settled here, I am going to send out
before and after pictures.
Everyone take care.
Rachel
=========================================================================
Date: Sun, 13 Jun 1999
19:47:40 -0600
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From: cgraham <cgraham@INFOAVE.NET>
Subject: FACES IN THE FOREST
MIME-version: 1.0
Content-type: text/plain; charset="us-ascii"
Hi all...I hope everyone is having a ball in Myrtle Beach! I wish
we were
there! I just got home from the screening of Dr. Larry Sargent's
Documentary. It is AWSOME!!!!!!! I cried the whole time!
It is called
"Faces in the Forest" and is up for 2 film festival awards here in
Tennessee! It has been bought by National Geographic here in
America and
someone else in Europe! We hope to see it airing in Sept or Oct.
You will
love it, of course I am prejudice because he is Daryl's doctor!
As soon as
I know more details of it coming on TV I will let you know! Take
care!
Denise Graham
=========================================================================
Date: Mon, 14 Jun 1999
01:23:48 EDT
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From: AOL User <Munch35738@AOL.COM>
Subject: Re: prenatal diagnosis
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Sherry, in answer to your question of prenatal diagnosing of Aperts
via
ultrasound it is not seen very well and almost never picked up.
Hi my name
is Mary and I did my senior thesis on Aperts. I do not have Aperts
per se,
but I do have a cranial facial deformity. I hope that this answer
the
question, and what is cyclic vomiting? Mary
=========================================================================
Date: Mon, 14 Jun 1999
06:13:12 -0400
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From: Greg and Sherry
Roehl <gnsroehl@FLASH.NET>
Subject: Re: prenatal diagnosis
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Mary,
I was just curious about the prenatal diagnosis. I thought perhaps
they would
be able to pick up the suture fusion, if nothing else.
Regarding Cyclic Vomiting Syndrome - it's rather hard to explain, so
I'll paste
a paragraph from NORD's web site:
"Cyclic vomiting syndrome is a rare digestive disorder that, for the
most part,
affects children. This disorder is characterized by
chronic nausea, vomiting, extreme fatigue, motion-sickness, abdominal
pain and,
in some cases, dizziness (vertigo) that may last
for hours to days. These episodes of symptoms seem to be similar in
onset and
duration for each affected individual. The exact
cause of cyclic vomiting syndrome is not known."
Luckily, Laney only tends to cycle every few months, but it's awful
when she
does. I feel so helpless. We did have some success with
aborting an episode
early last Wednesday. I gave her a suppository of Tigan (often
used to control
nausea for cancer patients undergoing chemo), and she only vomited
3 times.
That's really good. Usually, she has to be rehydrated with an
iv to stop a
cycle. Her last one was the day before Kieran was born, and she
was admitted
overnight. As a matter of fact, she was discharged from pediatrics
the same
day I was admitted to maternity. My husband had to leave me to
sign her
discharge papers, and her grandma took her home.
Does anyone else have another child with health problems in addition
to a child
with Apert's?
Sherry - mom to Kieran - 12wks w/Apert's, Laney-4 w/CVS & Bailey-7
AOL User wrote:
> Sherry, in answer to your question of prenatal diagnosing of Aperts
via
> ultrasound it is not seen very well and almost never picked up.
Hi my name
> is Mary and I did my senior thesis on Aperts. I do not have
Aperts per se,
> but I do have a cranial facial deformity. I hope that this
answer the
> question, and what is cyclic vomiting? Mary
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Date: Mon, 14 Jun 1999
08:56:38 -0400
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From: George Starr
<daystar@IGLOU.COM>
Subject: Butterfly Story
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Someone keeps sending these type of things to my work, they have the
wrong
address so I get them (I run our mail account so I get any problem
mail sent
to me) This one was interesting.
George
BUTTERFLY STORY
A man found a cocoon of a butterfly. One day a small opening appeared,
he
sat and watched the butterfly for several hours as it struggled to
force
it's body through that little hole.
Then it seemed to stop making any progress. It appeared as if it had
gotten as far as it could and it could go no farther.
So the man decided to help the butterfly, he took a pair of scissors
and
snipped off the remaining bit of the cocoon. The
butterfly then emerged easily. But it had a swollen body and small,
shriveled wings.
The man continued to watch the butterfly because he expected that,
at
any moment, the wings would enlarge and expand to be able to support
the
body, which would contract in time.
Neither happened! In fact, the butterfly spent the rest of its life
crawling around with a swollen body and shriveled wings.
It never was able to fly.
What the man in his kindness and haste did not understand was that the
restricting cocoon and the struggle required for the butterfly to to
get
through the tiny opening were God's way of forcing fluid from the body
of the butterfly into its wings so that it would be ready for flight
once it achieved it's freedom from the cocoon.
Sometimes struggles are exactly what we
need in our life. If God allowed us to go through our life without
any
obstacles, it would cripple us. We would not be as strong as what we
could have been. And we could never fly.
So have a nice day and struggle a little.
=========================================================================
Date: Mon, 14 Jun 1999
15:56:13 EDT
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From: Edelman Member
<CoH1862@AOL.COM>
Subject: Re: FACES IN THE FOREST
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Denise,
Iam glad you got to see to documentary. I would love to have
been there but
I am working full time now on 11-7. Hope to get together with you sometime.
Darryl's pictures are fabulous.
Diane in Tn.
=========================================================================
Date: Mon, 14 Jun 1999
17:17:12 -0400
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From: Richard Thornquist
<rlthorn@EARTHLINK.NET>
Subject: Re: prenatal diagnosis
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Sherry,
Here is my input on the prenatal diagnosis. When I was pregnant
with Andrew,
we had a specialist look at the ultrasound (Level II) and he did indeed
see a
problem with the hands, but said the feet were alright (they aren't).
Andrew's
head was engaged at the time and he mentioned that he could not get
a good
picture of the head, so there were no comments made about that.
I did have
excess amniotic fluid, which is an indication of something wrong with
the
pregnancy.
With my pregnancy with Meghan (now 5 weeks, can you believe it) we had
a Level
III ultrasound done. This type of ultrasound is 3-D, it was really,
really
cool. You actually saw the face....lips, eyes, nose and everthing.
3-D
ultrasounds are still farely new, but exceptional. There are
only 2 doctors in
MA who owns a 3-D machine (I think). I got this woman's name
from my
Pediatrician and Dr. Upton knows of her as well. She can diagnose
just about
anything. She said that Meghan was "typical", with no problems.
She was
right. Although I think Andrew is just as perfect.
If you want any more information about the 3-D ultrasounds, let me know.
Lynn Thornquist
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Date: Mon, 14 Jun 1999
17:22:02 -0400
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From: Richard Thornquist
<rlthorn@EARTHLINK.NET>
Subject: New Career!
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Hello All!
I have a small favor to ask of all of you. I would like your opinions.
I have been trying to find at-home jobs, so I will not have to return
to
my part-time job in Boston, MA. I have some real things lined
up
already, but was kind of hoping to start my own business. I have
decided to start selling Discovery Toys. You know, its like selling
tupperware, just exceptional children's toys. Would any of you
be
interested in being clients of mine, or maybe having a book party for
me. I could send all the stuff you would need and all you would
have to
do is mail the money to me, or e-mail me orders with credit card
numbers. I thought with such a large family, but someone would
be
interested.
Now, in order to not irritate with e-mails about this, please e-mail
me
personally at rlthorn@earthlink.net.
Thanks in advance.
Lynn Thornquist
=========================================================================
Date: Mon, 14 Jun 1999
22:11:20 +0000
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From: "J. G. Lindamood"
<chanan8@JUNO.COM>
Subject: what's up
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Hello out there!
It looks like everyone is at the beach. I usually get 6-15 messages
from
you all on a daily basis. Now I'm getting 1-5. Oh well.
I don't remember who I told what to, but just to cover my bases, I wanted
to tell you what's going on here.
My blood work all came back clean. No problems. My mammogram
however
was a little more complicated. Something about the density being
thick
and I need to be checked again in 6 months. My doctor doesn't
seemed to
be concerned, so I won't be either. However, I am no where near
feeling
normal yet. I have had two counseling sessions and am trying
with all of
my heart to perk up, but it just isn't happening.
A few nights ago I sat here and wrote a pathetic message, telling you
all
how bad it is. It was dripping with self pity and if letters
had audio,
you could hear the moans. The letter ended up in my personal
journal.
My counselor has challenged me to get involved somewhere. Like
volunteering for a non profit organization. I've considered it
and will
look into some possibilities this week.
My biggest downfall is sleeping. I cannot get myself out of bed
in the
morning. Thank God for a understanding supervisor. She is aware
of my
situation, but I can't abuse the system!!
Please keep me in your thoughts. I always sold my step dad short
when he
went through this same thing. I thought it was a matter of getting
up
and making yourself better. Now I know it's a little harder than
that.
Joanne
=========================================================================
Date: Mon, 14 Jun 1999
21:41:15 -0500
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From: "Niemi, Liz"
<Liz.Niemi@NMB.NORWEST.COM>
Subject: Re: prenatal diagnosis
MIME-Version: 1.0
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Lynn,
I'm interested in getting more information about the 3D ultrasounds.
I have
a friend (no, not me) who is pregnant here in Minneapolis, and is looking
for info on this new type of ultrasound.
Thanks a lot,
Liz Niemi (mom of Jake - 19 months w/Aperts)
-----Original Message-----
From: Richard
Thornquist [SMTP:rlthorn@EARTHLINK.NET]
Sent: Monday,
June 14, 1999 4:17 PM
To:
APERT@LISTSERV.AOL.COM
Subject:
Re: prenatal diagnosis
Sherry,
Here is my input on the prenatal
diagnosis. When I was pregnant
with Andrew,
we had a specialist look
at the ultrasound (Level II) and he did
indeed see a
problem with the hands,
but said the feet were alright (they
aren't). Andrew's
head was engaged at the
time and he mentioned that he could not get
a good
picture of the head, so
there were no comments made about that. I
did have
excess amniotic fluid, which
is an indication of something wrong
with the
pregnancy.
With my pregnancy with Meghan
(now 5 weeks, can you believe it) we
had a Level
III ultrasound done.
This type of ultrasound is 3-D, it was really,
really
cool. You actually
saw the face....lips, eyes, nose and everthing.
3-D
ultrasounds are still farely
new, but exceptional. There are only 2
doctors in
MA who owns a 3-D machine
(I think). I got this woman's name from
my
Pediatrician and Dr. Upton
knows of her as well. She can diagnose
just about
anything. She said
that Meghan was "typical", with no problems.
She was
right. Although I
think Andrew is just as perfect.
If you want any more information
about the 3-D ultrasounds, let me
know.
Lynn Thornquist
=========================================================================
Date: Mon, 14 Jun 1999
20:39:07 -0700
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&