Liz: I'm so sorry to hear about your father in law. My thoughts
and prayers
are with you.
Andrea: I'm so excited for you. I can't wait to read about how
you like the
results.
This has been a hard week. It started with problems I'm having
with
disability which I will go into at another time, because I really want
to
make this a crucade of mine. But we moved this week and while
the movers
were moving our things, I had to take Samantha for her six month followup.
Her peditrician said that he is really happy with how she's doing.
Just with
her cleft palate alone that she has never been sick is great.
He cleaned her
ears and it was tramatic for her and then she got a shot for hep b.
He then
said he was concerned with her head size (my hat therory might not
be so
stupid after all). He said he was going to tell her neurosurgeon.
I said we
were scheduled for a MRI of brain on 9th a week before her finger surgery.
He said ok.
That next day I got pictures from Christy Williams of Carlee a week
after her
cranial surgery. I also got to see the zig zag incision.
It was good to see
how she looks happy and fine one week later. Well a few hours
later her
neurosurgeon's office called and said that they had schduled her for
a MRI
the next morning. I called her case manager to see if we needed
to also see
plastic surgeon like was scheduled for the 9th. If there was
a need for her
first cranial then I wanted to be prepared. Thank God for her
because since
my birth I do not want anymore surprises. She said no because
this is to see
if she has hydracepalus(spelling?) and he wouldn't be involved with
a shunt
operation. Her doctor never indicated that he thought this.
I called him
and he said yes he was very concerned.
My father came with me and Samantha again fought being put under.
She was
hungry and hysterical and wouldn't go under for a hour. Then
the minute she
was done she woke up and screamed and screamed. Her doctor kept
going into
other surgeries so we didn't get to see him for six hours.
I was a wreck
dropping cokes and realizing that I'm the momma. Something that
at 38 years
old is new. I've got to be strong for her.
Finally we found out that he doesnt think she has fluid of brain, but
that
her brain did grow much quicker than anticipated and she has to have
the
cranial surgery within ten days. So we are schduled for June
9th. Her
fingers are postponed.
This is something we've known since the day she was born, but you all
know
it's so hard. I'm scared that they well screw up. I'm not
really big right
now on doctors. This week is now a worldwind of giving blood, getting
her
therapies in, trying to just go ten more days of her never being sick,
get
her preops etc. But my main goal is that we moved Wed into a
new house and
it's been crazy. I want to get her in a comfortable routine so
she has it to
come home to.
I'd be grateful for any tips about our hospital stay also if you can.
Especially things no one thinks about to take for the baby and myself.
We
live over a hour away but both our parents live close to hospital.
I plan to
stay with her.
I worry that her spirit will be hurt. She didn't smile for two
days after
the doc and MRI. It's like I'm watching her trust go away.
I feel like these past six months we've just been dabbling with the
Apert
Syndrome and now will be going full fledge so to say.
Thanks all for listening.
Love, Lisa Guyette
=========================================================================
Date: Tue, 1 Jun 1999
07:36:56 EDT
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From: Jenngram@AOL.COM
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Sorry to hear about the rushed procedure.....I hate it when that happens.....
BUT.....just to reassure you, everytime Joedan goes in for a CT, x-ray,
or
some test where he has to remain still he is madder than all get out
for a
few days (talk about holding a grudge!!!!!!)...after his cranial, and
all 6
hand surgeries he was back to his old self within the same time period
(at
least hes consistant). With his last hand surgery, it actually only
took a
few hrs and you never would have known he had a big surgery!!
Good Luck
Jenn
=========================================================================
Date: Tue, 1 Jun 1999
09:10:48 EDT
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From: Yonstein@AOL.COM
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Hello Everyone:
Since I have been away from my computer, I have too many e-mails to
catch up
on so there will be individual messages from me.
Jenn, Joe and Jordan, congratulations on your move. I am sure
Jenn it's very
stressful with everything else going on. Glad you are finally
taking time
out for yourself. Get settled and try to relax and enjoy your
new
surroundings.
Resa: Sorry to hear about the news of Mitchell's MRI. I,
too, would
continue to search and look for answers. I wouldn't be comfortable
waiting 3
months to find out what is going on. Perhaps another doctor to
interpret the
scans? Will be praying for good news.
Liz and family: Sorry to hear about your loss. It's a tought
time to be
going through, but at least it was peaceful for him.
Janine Krebs
=========================================================================
Date: Tue, 1 Jun 1999
09:29:41 EDT
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From: Yonstein@AOL.COM
Subject: Re: WOW!!! and Andrea
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CONGRATULATIONS Dori on a beautiful wedding. Sounds like it was
wonderful
and everyone had a great time. Thanks for sharing.
ANDREA; by now your surgery is over but my thoughts and prayers
were and are
with you. Let us know how it went.
Best wishes,
Janine
=========================================================================
Date: Tue, 1 Jun 1999
18:35:15 -0400
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From: Jack and Raquel
<jara1@BELLSOUTH.NET>
Subject: New births
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Hi all,
Just a few words to let you all know that our Aperts lists of birth
that
we know of are growing here in Florida. Just this past weekend
we
received two calls from two moms one was referred to us by our
neurosurgeon and she called me for comfort and I feel so good that
I was
able to give it to her. Her daughters name is Jena she is 2 months
old. She thanked me for helping her she will be getting internet
access
soon so hopefully she will be joining our list serv. That same
afternoon she was contacted by another Aperts mom whom was given her
number by the nurses at the hospital where her baby was born.
She then
called me that same afternoon I spoke to her for a while and she soon
will be joining our listserv her baby Lauren is 2 weeks old.
It's
amazing they both live about 2 hours from us and they live about 1/2
hour from each other. Babies born within a couple of months from
each
other. Sometimes I wonder if Aperts is still considered to be
1 in
160,000.00 births...They are going through right now what the majority
of us have already gone through, that uncertanty of not knowing what
to
do next and the feeling of are we doing enough. I know that until
the
surgeries start kicking in that is when you feel you are doing
something, I know that is how I felt. They will probably be going
to
Nicki's doctors so that will be good, we can visit etc..
Anyway their names are Tanya Tyson and Jill Brickman we will hopefully
soon see them joining our family...
Take care
Raquel Miller...
=========================================================================
Date: Tue, 1 Jun 1999
19:32:29 EDT
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From: Marilyn Williams
<Mbwill43@AOL.COM>
Subject: Re: BIRTHDAY
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HAPPY BIRTHDAY TO COURTNEY!!!!!!!!! IT DOESNT SEEM POSSIBLE THAT THEY
ARE
BOTH ONE ALREADY. WE'RE GOING TO CARLEE'S PARTY ON SAT. BYE FOR
NOW. MARILYN
=========================================================================
Date: Tue, 1 Jun 1999
19:41:26 EDT
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From: Marilyn Williams
<Mbwill43@AOL.COM>
Subject: Re: From Guyette Family
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DEAR LISA, I KNOW HOW SCARED YOU ARE, BUT WE WILL BE PRAYING FOR YOU
AND GOD
WILL BE WITH SAMATHA, IT'S WORSE ON THE PARENTS AND GRANDPARENTS THEN
THE
BABY, BELIEVE ME. WE WERE ALL A WRECK, BUT IT'S SUCH A RELIEF TO GET
IT
BEHIND YOU, TAKE CARE AND GOD BLESS YOU. MARILYN
=========================================================================
Date: Tue, 1 Jun 1999
20:28:39 -0400
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From: Mechelle Holt
<MOM-POOH-of-2@WEBTV.NET>
Subject: Re: New births
In-Reply-To: Jack and Raquel <jara1@BELLSOUTH.NET>'s message
of Tue, 1 Jun
1999 18:35:15 -0400
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Hi Raquel!
Courtney, and Carlee were born less than 24 hours apart last
year!
The most bizarre thing is that Cristy ( Carlee's mom) and I dressed
them
alike for Halloween, and I didn't get internet access until December!
What a coincidence! I was shocked! Maxine and Courtney
share the same
birthday date! :) We will be celebrating Courtney's birthday on Saturday
as well!:)
Mechelle
=========================================================================
Date: Tue, 1 Jun 1999
20:35:51 -0400
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From: Mechelle Holt
<MOM-POOH-of-2@WEBTV.NET>
Subject: Surgery
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GOOD LUCK to Andrea! I hope all went well! I wish you a
speedy
recovery!
Mechelle
=========================================================================
Date: Tue, 1 Jun 1999
20:50:08 -0400
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From: Richard Thornquist
<rlthorn@EARTHLINK.NET>
Subject: Been a long time!
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Hello everyone!
It has been a long time since I have written, not to mention read any
e-mails. I am finally catching up with everything and everyone.
I have
been so busy with now having two children to deal with. Going
from one
to two children is definately a challenge.....I don't know how other
mothers do it. It seems that everytime I think I have a moment
to spend
with Andrew alone, Meghan wakes up. I feel so bad for Andrew.
His
nighttime routine is always interrupted. Does anyone have any
ideas?
I want to let everyone know that I will be picking up Andrew's pictures
this week sometime and will send them out shortly there after.
I will
try and get a good picture of little Meghan to send as well.
I have a
picture of Andrew holding Meghan, but it isn't the best shot of Andrew.
I will have to see if I will send that one.
I will be praying for both Andrea and Joanne, as well as anyone else
having surgery soon.
Just a little update with Andrew. Well, we saw Andrew's
neurosurgeon
last week and he said that Andrew is doing very well. He doesn't
see
any need to do another CT scan on Andrew until his next surgery, which
is when he is 7 years old (they will be fixing his eye sockets at that
time). We discussed mid-face advancement and the Red System,
but he
told me that Andrew will NEVER need a mid-face advancement. That
was
such a relief!!!!! Then more good news when we went to see Dr.
Upton.
It looks like Andrew WILL be having his toes separated when he is 5
years old. I can't wait to see his separate little toes.
The
separation will not be as long as yours and mine, but still separate
all
the same. Andrew's metatarsals (sp.) are good length. It
seems that in
Apert children the metatarsal in the big toe is normally just a piece
of
bone, but with Andrew it is the whole bone. There will be no
deviation. We are very happy around here. Dr. Upton is
our savior.
Andrew will be starting his hand surgeries again in October.
Dr. Upton
will be thinning down his fingers, making the grafts disappear,
straightening his index fingers, and then straightening his thumbs
as
well as adding bone to them to make them longer. I tell you,
he is a
miracle worker. He was thrilled with the manipulation Andrew
has in his
fingers. It seems all doctors are thrilled with Andrew's progress.
Andrew will be leaving EI and strarting preschool in 3 short months.
I
can't wait. I am so exciting for Andrew and starting school.
I, unlike
some, have no problems with separating and sending Andrew to school.
It
is the best thing for him and it gives me some sanity time. As
it is,
Andrew loves his playgroup Monday and Wednesday mornings.
Speaking of Dr. Upton.....when I went to see him last week, he mentioned
that he has now seen his 98th, 99th, and 100th Apert patient.
The funny
thing is, he said they all knew me. I would love to know who
is
visiting him. I know you are Sheila and he told me how pleased
he was
with Paige's surgery.
Well, I better get going and take advantage of having both children
asleep. I have to mop the floors (how is that for relaxation).
My
sister and her family are coming up from Florida and staying with us
for
5 days. Boy is going to be crowded. I will try and not
be such a
stranger. Talk to you all later.
Lynn Thornquist
=========================================================================
Date: Tue, 1 Jun 1999
20:51:09 -0400
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From: Mechelle Holt
<MOM-POOH-of-2@WEBTV.NET>
Subject: Hi! :+)
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Hi lisa!
For Courtney's surgeries I always pack her pajamas of her own,
so she
has her home scents. I choose the ones that button up the back,
sine
they almost always put the iv in her head. Plus, she might still
have a
drain. Our hospital doesn't have infant cereal, so I pack a box.
I
would also take clothes u r going to "bum" around in. I normally
take a
pair of bedroom shoes for myself. Courtney has the Mead Jonson
cleft
bottles, and I take them, since I have the nipples ready to feed her
cereal. Don't forget her pacifier (if she takes one)!!!!!
I usually
take Court's mommy bear with us, since she sleeps with it at home.
We
also take some snacks for us, so we don't have to leave her. Hope this
helps!
Mechelle
=========================================================================
Date: Tue, 1 Jun 1999
21:05:31 -0500
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From: Randy & Deb
Picht <rldpicht@INFO.STARPOINT.NET>
Subject: Re: From Guyette Family
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Lisa,
We have gone through 2 cranialfacial surgeries. Bring alot of
books, word
search puzzles, crossword puzzles. You can only do so much to
get prepared
but from experience it is not easy on the parents. They have
such wonderful
drugs now for kids.
When Lisa (age 8 at the time) had her last cranialfacial they had a
medicine
that they gave her and I do not remember what it was but they told
us that
she will never remember the pain she went through.
It was harder on us. Don't ask how long it is going to take.
If they tell
you 6 hours and it ends up being 10 then you worry. If it is
like our
experience they will have a messenger come and give you updates every
2
hours. (Ask if they do that) That really helped.
They reassured us that
everything was going fine.
Lisa, remember you have to be strong for Samantha. Just
trust the doctors.
When surgery starts they are in God's hands. Samantha will
do just fine.
Been there done that.
Also ask the doctor when you go for preop if you can go all the way
into OR.
We got to do that and once Lisa was asleep then we left. They
were very
good about that. It is tramatic on the kids and if separation
is not going
to be easy they may allow you to do that. Ask about it.
Lisa hates to have the mask put over her nose. She fights that
to the point
where it takes 2 people to hold her down. So it did work out
well to go as
far as we possibly could.
-----Original Message-----
From: Lisa Guyette <LAM1126@AOL.COM>
To: APERT@LISTSERV.AOL.COM <APERT@LISTSERV.AOL.COM>
Date: Tuesday, June 01, 1999 2:35 AM
Subject: From Guyette Family
>Liz: I'm so sorry to hear about your father in law. My thoughts
and
prayers
>are with you.
>
>Andrea: I'm so excited for you. I can't wait to read about how
you like
the
>results.
>
>This has been a hard week. It started with problems I'm having
with
>disability which I will go into at another time, because I really
want to
>make this a crucade of mine. But we moved this week and while
the movers
>were moving our things, I had to take Samantha for her six month followup.
>Her peditrician said that he is really happy with how she's doing.
Just
with
>her cleft palate alone that she has never been sick is great.
He cleaned
her
>ears and it was tramatic for her and then she got a shot for hep b.
He
then
>said he was concerned with her head size (my hat therory might not
be so
>stupid after all). He said he was going to tell her neurosurgeon.
I said
we
>were scheduled for a MRI of brain on 9th a week before her finger
surgery.
>He said ok.
>
>That next day I got pictures from Christy Williams of Carlee a week
after
her
>cranial surgery. I also got to see the zig zag incision.
It was good to
see
>how she looks happy and fine one week later. Well a few hours
later her
>neurosurgeon's office called and said that they had schduled her for
a MRI
>the next morning. I called her case manager to see if we needed
to also
see
>plastic surgeon like was scheduled for the 9th. If there was
a need for
her
>first cranial then I wanted to be prepared. Thank God for her
because
since
>my birth I do not want anymore surprises. She said no because
this is to
see
>if she has hydracepalus(spelling?) and he wouldn't be involved with
a shunt
>operation. Her doctor never indicated that he thought this.
I called him
>and he said yes he was very concerned.
>
>My father came with me and Samantha again fought being put under.
She was
>hungry and hysterical and wouldn't go under for a hour. Then
the minute
she
>was done she woke up and screamed and screamed. Her doctor kept
going into
>other surgeries so we didn't get to see him for six hours.
I was a wreck
>dropping cokes and realizing that I'm the momma. Something that
at 38
years
>old is new. I've got to be strong for her.
>
>Finally we found out that he doesnt think she has fluid of brain,
but that
>her brain did grow much quicker than anticipated and she has to have
the
>cranial surgery within ten days. So we are schduled for June
9th. Her
>fingers are postponed.
>
>This is something we've known since the day she was born, but you
all know
>it's so hard. I'm scared that they well screw up. I'm
not really big
right
>now on doctors. This week is now a worldwind of giving blood, getting
her
>therapies in, trying to just go ten more days of her never being sick,
get
>her preops etc. But my main goal is that we moved Wed into a
new house and
>it's been crazy. I want to get her in a comfortable routine
so she has it
to
>come home to.
>
>I'd be grateful for any tips about our hospital stay also if you can.
>Especially things no one thinks about to take for the baby and myself.
We
>live over a hour away but both our parents live close to hospital.
I plan
to
>stay with her.
>
>I worry that her spirit will be hurt. She didn't smile for two
days after
>the doc and MRI. It's like I'm watching her trust go away.
>
>I feel like these past six months we've just been dabbling with the
Apert
>Syndrome and now will be going full fledge so to say.
>
>Thanks all for listening.
>
>Love, Lisa Guyette
>
=========================================================================
Date: Wed, 2 Jun 1999
14:11:31 +1200
Reply-To: Information exchange and Internet
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From: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: Re: Photo exchange
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Hi Raquel
Sorry, can't help as the rates from your country to ours are set by your postal service and vice versa. Can't you just phone them and ask?
Looking forward to seeing your photos. I'm still thinking about
ours because our latest family one is not flattering of me and I do want
to look my best for y'all! ("vanity, vanity, all is vanity")
:-)
Cheers
Ann
NZ
=========================================================================
Date: Wed, 2 Jun 1999
14:11:36 +1200
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From: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: Re: From Guyette Family
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Lisa, have faith in yourself and Samantha. Most of us have gone through this and we know it is tough, but try to remember that being there for her is all you can do, and all that is necessary for her. Trust doesn't get lost just like that, she will know you're in there batting for her.
No.1 recommendation is EMLA, the local anaesthetic cream. Great Globs of it onto any spot they may be sticking in a needle while she is awake. Take away the pain and you take away a lot of the fear. It may be okay for those kids who only have one session in hospital in their whole life (but I still think they should have it!) but our kids are in and out and should have anything that will make it less painful and scarey for them.
No.2 recommendation. (this may not apply to this op as she will probably be in special care for the first day or so - Amy was anyway) Don't let her drink too soon post op despite her entreaties. I made that mistake with Amy after one of her early ops and she very shortly afterwards threw up!! Believe the nurses if they tell you to give little sips!
Suggestions
- Tapes of her favourite music - with earplug if you're sharing
a room.
- Tapes of you reading her stories or singing - I always had
trouble reading without crying, so the tapes dealt with that issue, and
if she has an earplug no-one else has to hear you singing! Hearing
your voice is the important thing.
- Preferably peaceful, relaxing music.
- Little treats as pick-me-ups - for both of you.
- Favourite books to share (yours as well).
- Favourite toy or two.
- Colourful balloons hanging where she can see them. Another
child that was in at the same time as Amy (can't remember which time tho)
had a heart-shaped balloon with a face and with long paper legs attached
at the bottom, and it was filled with helium, so "walked" along the ward
when the breeze blew.
- Colourful windmills you can attach to her pram so when you
go for walks they spin around and amuse her.
- If you are sharing a ward you may well find she is so interested
in everyone else you won't need to do much entertaining, just hugging/holding.
- She will probably be pretty quiet for the first couple of days
and not want much stimulation or entertainment anyway.
- Someone to give you a break.
- Knitting, cross-stitch, whatever you like to do.
- Check out supplies of tea, coffee, etc, and what you have to
pay for. Take your own supply of your favourite sustenance, you deserve
it. My sister smuggled in a wee bottle of brandy for me and that
nightcap was so civilised! Another friend brought in a delicious
dinner complete with wine (the nurses turned a blind eye again), napkins
and all.
- And don't forget your physical comfort - what are the sleeping,
washing, etc, facilities. What are the mattresses and pillows like?
Do you need to take a sheepskin or blanket to put under you to make the
mattress comfortable?
And "relax" and go with the flow.
Thinking of you
Hugs
Ann
NZ
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Date: Wed, 2 Jun 1999
14:23:44 +1200
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From: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: Re: New births
Mime-Version: 1.0
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>Sometimes I wonder if Aperts is still considered to be 1 in
>160,000 births...
Hi Raquel
UK data is 1:160,000 but US data is 1:60,000 which is certainly more in line with the New Zealand births we know of - we are due for another any time now on that basis.
Great that you have been able to be in touch with these families. Please pass on our very best wishes from New Zealand, we look forward to "meeting" them soon.
Regards
Ann
NZ
=========================================================================
Date: Tue, 1 Jun 1999
19:28:34 -0700
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Sender: Information exchange and
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From: Richard Tait
<rjrtait@MARS.ARK.COM>
Subject: Re: Needing a Friend
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Hi, Patti my name is Jenn Tait my mom does all the e-mailing on the
list but
I was just reading through and I thought that I would like to talk
to you.
MY sister Julia has Aprerts she is turning three soon. I want
to let you
know that you are not alone I'm a 17 year old girl(I guess you could
figure
that out) in grade 11 and I've never dated and I'm lonely for a boyfriend
also. I have some advice about finding friends I've never been
really good
with friends all through elementary school I was made fun of I used
to come
home crying. But Last year God blessed me with the bestest best
friend that
I could never trade her in for the world. I was not doing very
well
ajusting to my new high school and I didn't have many friends but just
out
of no where I met her. I guess the whole point of this is to
say that there
is someone just waiting for you. I would like to be your friend
over e-mail
if that's okay. I have another e-mail that is my own it is
lilyflower2000@hotmail.com so you can write if you like. Don't
give up
hope, I know that there is someone out there not to far away waiting
for you!
Jenn:)
=========================================================================
Date: Tue, 1 Jun 1999
20:56:51 -0700
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Sender: Information exchange and
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From: "Brent E. Young"
<beyoung@IX.NETCOM.COM>
Subject: Re: Needing a Friend
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
Richard Tait wrote:
> Hi, Patti my name is Jenn Tait my mom does all the e-mailing on the
> list but
> I was just reading through and I thought that I would like to talk
to
> you.
> MY sister Julia has Aprerts she is turning three soon. I want
to let
> you
> know that you are not alone I'm a 17 year old girl(I guess you could
> figure
> that out) in grade 11 and I've never dated and I'm lonely for a
> boyfriend
> also. I have some advice about finding friends I've never been
really
> good
> with friends all through elementary school I was made fun of I used
to
> come
> home crying. But Last year God blessed me with the bestest
best
> friend that
> I could never trade her in for the world. I was not doing very
well
> ajusting to my new high school and I didn't have many friends but
just
> out
> of no where I met her. I guess the whole point of this is to
say that
> there
> is someone just waiting for you. I would like to be your friend
over
> e-mail
> if that's okay. I have another e-mail that is my own it is
> lilyflower2000@hotmail.com so you can write if you like. Don't
give
> up
> hope, I know that there is someone out there not to far away waiting
> for you!
>
> Jenn:)
Hi Jenn,
My name is Kelly Spadini. I have Aperts Syndrome. I happened to come
across your e-mail and I thought it would be cool to e-mail you. Like
you, I am 17 years old. I have never dated anyone unless you count
when
I went to Sadie Hawkins with someone I have known since preschool.
So I
consider that more as us going as "friends". I have never had a
boyfriend. I have pretty good luck as far as friends are concerned.
I
met my best friend last year. She is 4 months and 5 days older than
me.
We have become very close and can't be without each other for very
long.
We are often referred to as "partners in crime".=).
If you don't mind, I would love to get to know you over e-mail, and
Patti too if she wants.
I have my own e-mail address. It is libragirl18@hotmail.com. If you
want
to know more about me, you can see my page on Teeter's page.
I hope to hear from you soon.
Bye for now,
Kelly
=========================================================================
Date: Wed, 2 Jun 1999
02:05:41 EDT
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From: Lisa Guyette
<LAM1126@AOL.COM>
Subject: Thanks
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit
Thanks to everyone who responded to my note about Samantha's upcoming
surgery
on June 9th. I've written everything down and am so happy to
have tips of
what to bring. It helped alot.
Love, Lisa Guyette
=========================================================================
Date: Wed, 2 Jun 1999
10:23:01 -0500
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From: Carbide Tech
<ruth@CARBIDETECH.COM>
Subject: Re: WOW!!!
MIME-Version: 1.0
Content-Type: text/plain; charset=ISO-8859-1
Content-Transfer-Encoding: 7bit
Hi There!
I was just wondering if anyone got my e-mail from last week..about Kris
having her Quinceanera and her surgery date...no one seemed to talk
about
it...this has happened three times already and I am just wondering
if,...maybe you all didn't get them???
Can someone remember??
Thanks,
Ruth Contreras (mother of Kris 15 y/o w/ Apert)
----------
> From: Howard & Ann <howrdnan@IHUG.CO.NZ>
> To: APERT@LISTSERV.AOL.COM
> Subject: Re: WOW!!!
> Date: Monday, May 31, 1999 3:13 AM
>
> What a wonderful experience that all must have been for you and your
family, Dori. You have every right to be proud of them.
>
> Congratulations to Delaney and her husband on their Special Day.
>
> And please continue sharing your good times.
>
> Hugs
> Ann
> NZ
=========================================================================
Date: Wed, 2 Jun 1999
16:34:33 -0500
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From: "Niemi, Liz"
<Liz.Niemi@NMB.NORWEST.COM>
MIME-Version: 1.0
Content-Type: text/plain
You bet!! I love the pictures of everyone. We look forward
to seeing more
come in!
Liz
-----Original Message-----
From: Marilyn
Williams [SMTP:Mbwill43@AOL.COM]
Sent: Wednesday,
May 26, 1999 7:28 PM
To:
APERT@LISTSERV.AOL.COM
Subject:
HI LIZ, THANKS SO MUCH FOR
THE PICTURE OF JAKE AND IS DAD. HE SURE
HAS GROWN
SINCE THE SHOW. CRISTY SHOWED
IT TO ME WHEN SHE GOT IT . TAKE CARE
AND THANKS
AGAIN. MARILYN
=========================================================================
Date: Wed, 2 Jun 1999
16:39:24 -0500
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From: "Niemi, Liz"
<Liz.Niemi@NMB.NORWEST.COM>
Subject: Re: Father-In-Law
MIME-Version: 1.0
Content-Type: text/plain
Thanks Sheila! It is a very difficult time for us. He was
a very special
man. A real family man and a devoted husband who loved his grand
kids. He
will be dearly missed.
Liz
-----Original Message-----
From: Sheila
MacDonald [SMTP:SMacdo1030@AOL.COM]
Sent: Wednesday,
May 26, 1999 10:07 PM
To:
APERT@LISTSERV.AOL.COM
Subject:
Re: Father-In-Law
Dear Liz,
Our sincere thoughts and
prayers are with you at this time. It is
one of the
hardest things to go through
in losing a parent. I am sure that you
felt he
was as close as a father
the same way I feel about my father-in-law.
Wish
your family well for us.
God Bless,
Sheila MacDonald (Paige's
Mom)
=========================================================================
Date: Wed, 2 Jun 1999
16:41:02 -0500
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From: "Niemi, Liz"
<Liz.Niemi@NMB.NORWEST.COM>
Subject: Re: On my way
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
Content-Transfer-Encoding: 8bit
Good luck Andrea! We'll all be thinking of you!!!
Liz Niemi & Family
-----Original Message-----
From: Andrea
Gartner [SMTP:agartner@PEGANET.NET]
Sent: Wednesday,
May 26, 1999 11:57 PM
To:
APERT@LISTSERV.AOL.COM
Subject:
On my way
Hi everyone,
Well, the time has come.
In 2 hours I'll be on my way to Miami.
The surgery will start at 7:30. They are going to make the eyes
look
average and move them closer together, and heighten my nose, and round
off
the upper side of my face.
Thank you all for keeping
me in your prayers. Joanne, I hope things
get better for you. I agree with what you said Jenn!
I hope Mitchell's
spot on the brain isn't serious. Liz, sorry to hear about your
father in
law.
I'll be looking forward to reading e-mails when I get back! :>)
Take care,
Andrea
=========================================================================
Date: Wed, 2 Jun 1999
16:42:51 -0500
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From: "Niemi, Liz"
<Liz.Niemi@NMB.NORWEST.COM>
Subject: Re: Father-In-Law
MIME-Version: 1.0
Content-Type: text/plain
Thanks Joni! My in-laws would have been married 40 years this
August. He
was a real gem!
Liz
-----Original Message-----
From: Joni Stephens
[SMTP:athsteph@ACS.EKU.EDU]
Sent: Thursday,
May 27, 1999 7:21 AM
To:
APERT@LISTSERV.AOL.COM
Subject:
Re: Father-In-Law
Liz:
Thinking about you and your family. I am praying that the
Lord will
give you strength and comfort
in this time of sorrow and loss.
Joni
=========================================================================
Date: Wed, 2 Jun 1999
18:32:29 +0000
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From: "J. G. Lindamood"
<chanan8@JUNO.COM>
MIME-Version: 1.0
Content-Type: text/plain
Content-Transfer-Encoding: 7bit
hello
my doctor said if I felt as good as I looked on paper, I'd be feeling
like a million bucks. No adverse results from all of the tests,
with the
exception of the mammogram which isn't in yet. I have doctors
orders to
seek counseling. I went to a bookstore to find a "pick me up"
without
all the strings.. marriage, children, serious relationships.
I'm a
single 34 year old and there isn't much out there for people in my
predicament. I don't need to know how to cope with life as a
married
person with or without kids. I told my friend I was going to
look for a
church that caters to the singles. "Ha!" was her response.
We both know
it don't exist.
Joanne
=========================================================================
Date: Wed, 2 Jun 1999
17:47:53 -0500
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From: "Niemi, Liz"
<Liz.Niemi@NMB.NORWEST.COM>
Subject: Re: New births
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
Raquel,
I would be more than happy to talk with either of these families if
they
wish. The thing that helped me the most after Jake was born,
was talking
with other parents with Apert kids. Please e-mail me off-line
at
Liz.Niemi@nmb.norwest.com <mailto:Liz.Niemi@nmb.norwest.com>
and I will
give you my phone number to give to them. It's important to give
them
CORRECT information at this critical time.
Liz Niemi and Family (mom of Jake 18 mos. w/Aperts)
-----Original Message-----
From: Jack and
Raquel [SMTP:jara1@BELLSOUTH.NET]
Sent: Tuesday,
June 01, 1999 5:35 PM
To:
APERT@LISTSERV.AOL.COM
Subject:
New births
Hi all,
Just a few words to let you
all know that our Aperts lists of birth
that
we know of are growing here
in Florida. Just this past weekend we
received two calls from
two moms one was referred to us by our
neurosurgeon and she called
me for comfort and I feel so good that I
was
able to give it to her.
Her daughters name is Jena she is 2 months
old. She thanked me
for helping her she will be getting internet
access
soon so hopefully she will
be joining our list serv. That same
afternoon she was contacted
by another Aperts mom whom was given her
number by the nurses at
the hospital where her baby was born. She
then
called me that same afternoon
I spoke to her for a while and she
soon
will be joining our listserv
her baby Lauren is 2 weeks old. It's
amazing they both live about
2 hours from us and they live about 1/2
hour from each other.
Babies born within a couple of months from
each
other. Sometimes I
wonder if Aperts is still considered to be 1 in
160,000.00 births...They
are going through right now what the
majority
of us have already gone
through, that uncertanty of not knowing what
to
do next and the feeling
of are we doing enough. I know that until
the
surgeries start kicking
in that is when you feel you are doing
something, I know that is
how I felt. They will probably be going
to
Nicki's doctors so that
will be good, we can visit etc..
Anyway their names are Tanya
Tyson and Jill Brickman we will
hopefully
soon see them joining our
family...
Take care
Raquel Miller...
=========================================================================
Date: Wed, 2 Jun 1999
20:12:08 EDT
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From: Marilyn Williams
<Mbwill43@AOL.COM>
Subject: Re: WOW!!!
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit
RUTH, DON'T REMEMBER SEEING An E-MAIL FROM YOU, PLEASE GIVE US THE DETAILS
ABOUT THE SURGERY ETC., THANKS MARILYN
=========================================================================
Date: Wed, 2 Jun 1999
20:34:11 EDT
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From: BBarn60368@AOL.COM
Subject: Re: New births
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit
Raquel:
Where in Fl. are Tanya and Jill? We are in Lake Mary, Fl....
just north of
Orlando. I would love to offer comfort and conversation, particularly
if
they are close by.
Thanks in advance,
Alice in Orlando, Fl.
=========================================================================
Date: Wed, 2 Jun 1999
20:38:10 EDT
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From: Jenngram@AOL.COM
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Joanne,
I have heard those same words from my doctors for years...fortunately
the
ones I pay are nicer about it than the one I live with, who says I
am merely
a hypocondriac......which I probablly am, but still I don't agree wiht
his
version of my diagnosis.
Regardless, glad to hear you are fine from a physical standpoint...at
least
now you can concentrate on the spiritual/mental part. One less thing
to worry
about
Jenn
=========================================================================
Date: Thu, 3 Jun 1999
19:00:32 +1200
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From: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: Kris's Quinceanera
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Hi Ruth
Your message certainly came through and the Quinceanera sounds a wonderful celebration for a young lady. It must be a very exciting time for Kris leading up to this special day, and something for her to look forward to following her surgery last year. Do we get some photos?
Hope it all goes fantastically.
Regards
Ann
NZ
=========================================================================
Date: Thu, 3 Jun 1999
07:54:04 EDT
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From: TFinch10@AOL.COM
Subject: Re: Upcoming Boston area get-together
MIME-Version: 1.0
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Hi all--
We're hosting a Boston-area get-together, as we do every year, for
families
whose children have craniofacial conditions and for affected adults.
Sheila,
Beth and Lynn--you three pop to mind as being Boston-area but I'm sure
that
in my brain-overloaded state, I've missed some Listserv folks. The
date is
Sunday, July 11th from 1 to 5 pm at our house in Lexington. Bring a
bathing
suit. We'll swim and picnic and chat and play baseball. RSVP please
to my
email (TFinch10@aol.com). Congrats Lynn on the new baby. Hope you can
come!
Jeanne McD
=========================================================================
Date: Thu, 3 Jun 1999
09:31:40 -0500
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From: Dora Jefferson
<dajeff@SIU.EDU>
Organization: Southern Illinois University at Carbondale
Subject: Re: Quinceanera and Mid face
MIME-Version: 1.0
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Dear Ruth,
I checked my e-mail again the this is the only one I have in regards
to
Kris's Quinceanera. I do not have one that give details of the
event or
the date. I would love to hear about it.
<Sorry I had not written in awhile, but I have been reading all of
your
e-mails...I have been so busy ...as most of you know ...we are getting
ready to celebrate Kris Quinceanera...for those of you who don't know
what
it is..It is BIG deal...A traditional Spanish Custom to celebrate
a
young
womans life...Actually Kris will be 16 in July...but since she had
a
surgery last year we postponed it for this year. It is on Saturday
,
June
5...She is sooooo excited!!!!>
As far as the mid face, I can understand Kris' hesitation. We
certainly
felt that way last year. However, it is behind us now and we
are really
glad that we did. The RED System sounds scarier than it must
be. We
were first offered that technique and turned it down because we couldn't
imagine Seth wearing it, although others have done so and had good
results. We went with the internal distracter. It worked
well and Seth
looks great. The Apert look is gone.
Ask Kris if it would help to see before and after pictures of Seth.
I
sent a set to Andrea and Kelly. The set that Rachel Fletcher
sent us
really gave us courage and helped to calm our fears.
Warmly, Dori
=========================================================================
Date: Thu, 3 Jun 1999
10:42:47 -0500
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From: Carbide Tech
<ruth@CARBIDETECH.COM>
Subject: Re: Quinceanera and Mid face
MIME-Version: 1.0
Content-Type: text/plain; charset=ISO-8859-1
Content-Transfer-Encoding: 7bit
Dear Dora,
Thank you for responding to my e-mail...Yes, Kris is super excited about
this Saturdays great event..she can not wait!
I told Laura Pulido (MArtha Palacio) Mom that I would put her
pictures in
the club as soon as I could....
Also, to Ann in NZ,, thanks for writing...It is promising to be the
event
of her lifetime!!!! Besides meeting Hakeem Olujowan (basketball
great)
and a favorite reporter that she absolutely loves....She is so excited!!!!
Pictures will be splashed around all over over the "club"...and of course,
I will be walking around like a "peacock"...
See YA!! I STILL don't have my dress...actually it has been narrowed
down
to 3...after trying on 30 million ( or so it seems)
I have to get it today or else I will not have time tomorrow!!!
Hasta la vista mis amigos!!!!
Ruth "Proud Peacock" Contreras
----------
> From: Dora Jefferson <dajeff@SIU.EDU>
> To: APERT@LISTSERV.AOL.COM
> Subject: Re: Quinceanera and Mid face
> Date: Thursday, June 03, 1999 9:31 AM
>
> Dear Ruth,
>
> I checked my e-mail again the this is the only one I have in regards
to
> Kris's Quinceanera. I do not have one that give details of
the event or
> the date. I would love to hear about it.
>
> <Sorry I had not written in awhile, but I have been reading all
of your
> e-mails...I have been so busy ...as most of you know ...we are getting
> ready to celebrate Kris Quinceanera...for those of you who don't
know
> what
> it is..It is BIG deal...A traditional Spanish Custom to celebrate
a
> young
> womans life...Actually Kris will be 16 in July...but since she had
a
> surgery last year we postponed it for this year. It is on Saturday
,
> June
> 5...She is sooooo excited!!!!>
>
> As far as the mid face, I can understand Kris' hesitation.
We certainly
> felt that way last year. However, it is behind us now and we
are really
> glad that we did. The RED System sounds scarier than it must
be. We
> were first offered that technique and turned it down because we couldn't
> imagine Seth wearing it, although others have done so and had good
> results. We went with the internal distracter. It worked
well and Seth
> looks great. The Apert look is gone.
>
> Ask Kris if it would help to see before and after pictures of Seth.
I
> sent a set to Andrea and Kelly. The set that Rachel Fletcher
sent us
> really gave us courage and helped to calm our fears.
>
> Warmly, Dori
=========================================================================
Date: Thu, 3 Jun 1999
17:32:53 -0500
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and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
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and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: "Niemi, Liz"
<Liz.Niemi@NMB.NORWEST.COM>
Subject: Re: Quinceanera and Mid face
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
I didn't realize that there is also an internal distracter! Who
did the
surgery on Seth again?? Also, who is the doctor in Texas that
has been
performing the majority of the mid-face advancements on Apert kids??
If
this was told before, I missed it.
Thanks,
Liz Niemi and Family
-----Original Message-----
From: Dora Jefferson
[SMTP:dajeff@SIU.EDU]
Sent: Thursday,
June 03, 1999 9:32 AM
To:
APERT@LISTSERV.AOL.COM
Subject:
Re: Quinceanera and Mid face
Dear Ruth,
I checked my e-mail again
the this is the only one I have in regards
to
Kris's Quinceanera.
I do not have one that give details of the
event or
the date. I would
love to hear about it.
<Sorry I had not written
in awhile, but I have been reading all of
your
e-mails...I have been so
busy ...as most of you know ...we are
getting
ready to celebrate Kris
Quinceanera...for those of you who don't
know
what
it is..It is BIG deal...A
traditional Spanish Custom to celebrate a
young
womans life...Actually Kris
will be 16 in July...but since she had a
surgery last year we postponed
it for this year. It is on Saturday
,
June
5...She is sooooo excited!!!!>
As far as the mid face, I
can understand Kris' hesitation. We
certainly
felt that way last year.
However, it is behind us now and we are
really
glad that we did.
The RED System sounds scarier than it must be.
We
were first offered that
technique and turned it down because we
couldn't
imagine Seth wearing it,
although others have done so and had good
results. We went with
the internal distracter. It worked well and
Seth
looks great. The Apert
look is gone.
Ask Kris if it would help
to see before and after pictures of Seth.
I
sent a set to Andrea and
Kelly. The set that Rachel Fletcher sent
us
really gave us courage and
helped to calm our fears.
Warmly, Dori
=========================================================================
Date: Thu, 3 Jun 1999
17:57:57 -0500
Reply-To: Information exchange and Internet
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From: "Niemi, Liz"
<Liz.Niemi@NMB.NORWEST.COM>
Subject: Re: From Guyette Family
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
Lisa,
Thanks so much for the well wishes regarding my father-in-law.
I totally relate to how you're feeling about surgeries and doctor's
appointments, etc. After Jake was born, I never realized how
deeply
involved we were going to be in working with health care professionals.
After awhile, I realized that if you are not getting the answers to
your
questions, move on!! Don't let the red tape get in the way.
These people
are here to work for you and your daughter. If they are not interested
in
what is best for her, get someone who is! We've run into a couple
of
situations with surgeons, which today, still chaps my hide. Don't
let them
treat you like CRAP! I usually take Jake to most of his appointments.
One
ENT surgeon we had, continually blew me off while in his clinic.
When my
husband would come with me, things were TOTALLY different. He
was polite,
answered all MY HUSBHAND'S questions, and never once looked at me!
That
didn't last long!! Be your child's advocate, and don't let the
system or
anyone else get in your way of what YOU feel is best for your daughter.
Like you, I also felt I was doing Jake an injustice by making him go
through
all these surgeries. I knew he'd never remember them, and he
ALWAYS
recovered right away, with a smile of course. But handing him
over to the
doctors before surgery made me feel like a failure. Like he's
supposed to
trust me, and here I am, inflicting all this physical pain on him.
I know
it's for his own good, and hopefully, someday he'll say "Thanks Mom."
Believe me, the doctor's appointments become less, the surgeries less
and
the illnesses less. Pretty soon, you'll be saying "she can be
a kid now",
like I did only one month ago about Jake.
You're doing a great job for her...don't forget it!!
Take care,
Liz Niemi and Family
-----Original Message-----
From: Lisa Guyette
[SMTP:LAM1126@AOL.COM]
Sent: Tuesday,
June 01, 1999 2:35 AM
To:
APERT@LISTSERV.AOL.COM
Subject:
From Guyette Family
Liz: I'm so sorry to hear
about your father in law. My thoughts and
prayers
are with you.
Andrea: I'm so excited for
you. I can't wait to read about how you
like the
results.
This has been a hard week.
It started with problems I'm having with
disability which I will
go into at another time, because I really
want to
make this a crucade of mine.
But we moved this week and while the
movers
were moving our things,
I had to take Samantha for her six month
followup.
Her peditrician said that
he is really happy with how she's doing.
Just with
her cleft palate alone that
she has never been sick is great. He
cleaned her
ears and it was tramatic
for her and then she got a shot for hep b.
He then
said he was concerned with
her head size (my hat therory might not
be so
stupid after all).
He said he was going to tell her neurosurgeon.
I said we
were scheduled for a MRI
of brain on 9th a week before her finger
surgery.
He said ok.
That next day I got pictures
from Christy Williams of Carlee a week
after her
cranial surgery. I
also got to see the zig zag incision. It was
good to see
how she looks happy and
fine one week later. Well a few hours later
her
neurosurgeon's office called
and said that they had schduled her for
a MRI
the next morning.
I called her case manager to see if we needed to
also see
plastic surgeon like was
scheduled for the 9th. If there was a need
for her
first cranial then I wanted
to be prepared. Thank God for her
because since
my birth I do not want anymore
surprises. She said no because this
is to see
if she has hydracepalus(spelling?)
and he wouldn't be involved with
a shunt
operation. Her doctor
never indicated that he thought this. I
called him
and he said yes he was very
concerned.
My father came with me and
Samantha again fought being put under.
She was
hungry and hysterical and
wouldn't go under for a hour. Then the
minute she
was done she woke up and
screamed and screamed. Her doctor kept
going into
other surgeries so we didn't
get to see him for six hours. I was a
wreck
dropping cokes and realizing
that I'm the momma. Something that at
38 years
old is new. I've got
to be strong for her.
Finally we found out that
he doesnt think she has fluid of brain,
but that
her brain did grow much
quicker than anticipated and she has to have
the
cranial surgery within ten
days. So we are schduled for June 9th.
Her
fingers are postponed.
This is something we've known
since the day she was born, but you
all know
it's so hard. I'm
scared that they well screw up. I'm not really
big right
now on doctors. This week
is now a worldwind of giving blood,
getting her
therapies in, trying to
just go ten more days of her never being
sick, get
her preops etc. But
my main goal is that we moved Wed into a new
house and
it's been crazy. I
want to get her in a comfortable routine so she
has it to
come home to.
I'd be grateful for any tips
about our hospital stay also if you
can.
Especially things no one
thinks about to take for the baby and
myself. We
live over a hour away but
both our parents live close to hospital.
I plan to
stay with her.
I worry that her spirit will
be hurt. She didn't smile for two days
after
the doc and MRI. It's
like I'm watching her trust go away.
I feel like these past six
months we've just been dabbling with the
Apert
Syndrome and now will be
going full fledge so to say.
Thanks all for listening.
Love, Lisa Guyette
=========================================================================
Date: Thu, 3 Jun 1999
21:16:45 -0400
Reply-To: Information exchange and Internet
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From: Jack and Raquel
<jara1@BELLSOUTH.NET>
Subject: New Births
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
Hi, Alice and Cristy,
To answer your questions about where the new families I spoke to are
from, Tanya Tyson is from Okeechobee in the Palm Beach area and Jill
Brickman is from Hobe Sound just north of Jupiter both in the Palm
Beach
area. So they are approximately anywhere between 1-2 hours from
us
(depending on traffic).
Cristy, we are not from Orlando we are from the Ft. Lauderdale area..Our
city is called Weston we are west of Ft. Lauderdale a couple of miles
from the everglades. And yes we are going to Myrtle Beach....We
are
very excited...and very much looking forward to meeting everyone....See
you there.....
Raquel Miller....
=========================================================================
Date: Fri, 4 Jun 1999
01:40:34 EDT
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From: Lisa Guyette
<LAM1126@AOL.COM>
Subject: Re: From Guyette Family
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit
Thanks so much for a wonderful letter. I can see the light at
the end of the
tunnel when I hear that Jake is living a regular life now. Thank
God huh for
this network.
Love Lisa
=========================================================================
Date: Fri, 4 Jun 1999
03:29:32 -0500
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From: PAUL UHRIG <p.uhrig@WORLDNET.ATT.NET>
MIME-Version: 1.0
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boundary="----=_NextPart_000_0010_01BEAE3A.760F4140"
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------=_NextPart_000_0010_01BEAE3A.760F4140
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HELLOI EVEYBODYmy name is paul uhrig and i have aperts and just want
to =
say welcome to my e-mail address is p-uhrig@excite .com so send
me a =
e-mail if you like i wuold like to talk to any body out there
------=_NextPart_000_0010_01BEAE3A.760F4140
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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>HELLOI EVEYBODYmy name is
paul uhrig =
and i have=20
aperts and just want to say welcome to my e-mail address
is =
p-uhrig@excite=20
.com so send me a e-mail if you like i wuold like to talk to any body
=
out=20
there</FONT></DIV></BODY></HTML>
------=_NextPart_000_0010_01BEAE3A.760F4140--
=========================================================================
Date: Fri, 4 Jun 1999
17:18:48 EDT
Reply-To: Information exchange and Internet
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From: BBarn60368@AOL.COM
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Content-Transfer-Encoding: 7bit
Hello Paul:
Welcome to the listserv! Tell us about yourself. Where
do you live? How
old are you?..... Anything you would like to share. This is a
wonderful
place to be and we are glad you have joined us. I have a daughter,
Shirley,
who has Apert. She will be 6 years old on the 9th.
Hope to hear from you again soon,
Alice in Orlando, Fl.
=========================================================================
Date: Fri, 4 Jun 1999
18:34:19 EDT
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From: Marilyn Williams
<Mbwill43@AOL.COM>
Subject: Re: New Births
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit
HI RACQUEL, GOT NICKI'S PICTURE TODAY AND WANT TO THANK YOU FOR THEM,
SHE IS
A DOLL CAN'T WAIT TO MEET YOU GUYS IN MYRTLEBCH. SEE YOU THERE. MARILYN
CARLEE'S GRANNY
=========================================================================
Date: Fri, 4 Jun 1999
15:35:56 -0500
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From: Tingley <tstctingley@COMWARES.NET>
Subject: Paul Uhrig
MIME-Version: 1.0
Content-Type: text/plain; charset=ISO-8859-1
Content-Transfer-Encoding: 7bit
Hi Paul.
Welcome to the family. My name is Stephanie Tingley and
I have a daughter
with Apert. Her name is Carroline we live in Illinois.
Where are you
from? This Listserv is a wonderful group of people.
Cristy give Carlee a big Birthday hug and kiss from me. See you
all at
Myrtle Beach in one week. I can't wait I feel like a little kid.
Stephanie and Carroline
=========================================================================
Date: Fri, 4 Jun 1999
20:58:38 EDT
Reply-To: Information exchange and Internet
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From: GSieb91515@AOL.COM
Subject: Re: Quinceanera and Mid face
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
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Liz--
I believe you are referring to Dr. Fearon in Dallas. Also,
Dr. Salyer's
group is doing them.
Brenda
Houston
=========================================================================
Date: Fri, 4 Jun 1999
21:04:39 EDT
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From: GSieb91515@AOL.COM
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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: Fri, 4 Jun 1999
21:08:39 EDT
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From: GSieb91515@AOL.COM
Subject: Re: New births
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit
Ann--
Where did you get the info re US births at 1 in 60,000? Everything
that I
have ever received and read always said 1 in 160,000. I would
love to know
if there is new data out there especially since when Jonathan was born
we
were given a very negative and dismal forecast from the medical text
that we
received in the hospital. What a great victory if someone is
actually
updating this stuff and getting it to new parents.
Just courious--
Brenda
Houston
=========================================================================
Date: Fri, 4 Jun 1999
21:09:49 EDT
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From: Yonstein@AOL.COM
Subject: Re: From Guyette Family
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
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Dear Lisa:
=========================================================================
Date: Fri, 4 Jun 1999
21:15:53 EDT
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From: Yonstein@AOL.COM
Subject: Re: From Guyette Family
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OOPS, sorry.
I am kind of late sending this, but hopefully it will help. One
of the
things we have learned with Emily, (almost 2) is that instead of putting
the
mask over her nose and mouth, if they put it off to the side and she
can
breathe in, she will go out and they can then put it over her.
It's less
traumatic for the kids. That's what we have them do with Emily
now. Also,
one of us always goes in with her (usually my husband) so that it's
our face
she sees last and not a stranger. It's never easy, though.
As far as the hospital and the cranial surgery, in case nobody told
you yet,
expect her to be swollen and eyes shut for a day or so, possible a
little
black and blue. She will be on IV and not eating or drinking
until possible
the 2nd day or so, although everyone is different. Even though
everyone told
me Emily would have tubes coming out of every part of her body, it
was still
a shock to see. I guess I didn't realize that the ventilator
would be
breathing for her as well. That was also for approx. 2 days because
she had
some congestion in her lungs from it and they wanted to make sure there
was
no infection.
We put some pictures up of her brother and us in the crib area and you
might
want to bring anything familiar to her for when she wakes up.
We didn't
bother with pajamas, just left her in the hosp. gown. Emily was
2 and a half
months when she had her cranial surgery. I didn't want to move
her the first
couple of days.
For yourself, try to get as much rest over the next couple of days.
It's a
very stressful and emotional time. If I can answer anything else,
please
e-mail me directly Yonstein@aol.com.
Best wishes,
Janine Krebs
=========================================================================
Date: Fri, 4 Jun 1999
21:28:17 EDT
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From: Yonstein@AOL.COM
Subject: Re: Welcom Paul
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WELCOME PAUL
We are the Krebs family from New York. Emily, my daughter, is
almost 2 with
Apert syndrome. Where are you from? How old are you?
Would love to hear
more about you.
Best wishes,
Janine Krebs
=========================================================================
Date: Fri, 4 Jun 1999
21:31:50 EDT
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From: Yonstein@AOL.COM
Subject: Re: Quinceanera and Mid face
MIME-Version: 1.0
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Good luck to Kris tomorrow, enjoy your day and Mom, too. Sounds
like a great
time.
Hope you got your dress, Ruth.
Enjoy, can't wait to see the pictures.
Janine Krebs
=========================================================================
Date: Fri, 4 Jun 1999
21:49:03 EDT
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From: Yonstein@AOL.COM
Subject: Re: Apert chat
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Hello all:
I was just in the apert chat discussions and there is a post from April
23rd
from someone looking for Emily's family. I thought it was my
Emily since I
don't know of another one.
Anyway, it's not. They are looking for a family from Central Wisconsin
with
a daughter Emily about 4 years old. They met in Cincinnati Children's
Hosp.
last fall.
Anyway, if anyone knows of this family, please e-mail Leah at
Noah1@mn.tds.net.
Janine
PS. If you want to read the letter to to the excite community
at apert chat
and it's in the discussions.
=========================================================================
Date: Fri, 4 Jun 1999
21:19:02 -0500
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From: "Niemi, Liz"
<Liz.Niemi@NMB.NORWEST.COM>
Subject: Re: Quinceanera and Mid face
MIME-Version: 1.0
Content-Type: text/plain
Thanks Brenda!
Liz
-----Original Message-----
From: GSieb91515@AOL.COM
[SMTP:GSieb91515@AOL.COM]
Sent: Friday,
June 04, 1999 7:59 PM
To:
APERT@LISTSERV.AOL.COM
Subject:
Re: Quinceanera and Mid face
Liz--
I believe you are referring
to Dr. Fearon in Dallas. Also, Dr.
Salyer's
group is doing them.
Brenda
Houston
=========================================================================
Date: Fri, 4 Jun 1999
21:21:24 -0500
Reply-To: Information exchange and Internet
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From: "Niemi, Liz"
<Liz.Niemi@NMB.NORWEST.COM>
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Content-Type: text/plain; charset="iso-8859-1"
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Hi Paul!
Welcome to the group!! We're excited to have you with us.
My name is Liz
Niemi, and I have a son named Jake with Apert Syndrome. He will
be 19
months old next week. Hope all is going well with you.
Please write and
tell us more about yourself when you get a minute.
Liz Niemi and Family
-----Original Message-----
From: PAUL UHRIG
[SMTP:p.uhrig@WORLDNET.ATT.NET]
Sent: Friday,
June 04, 1999 3:30 AM
To:
APERT@LISTSERV.AOL.COM
Subject:
HELLOI EVEYBODYmy name is
paul uhrig and i have aperts and just want
to say welcome to my e-mail address is p-uhrig@excite .com so
send me a
e-mail if you like i wuold like to talk to any body out there
=========================================================================
Date: Fri, 4 Jun 1999
21:22:59 -0500
Reply-To: Information exchange and Internet
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Sender: Information exchange and
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From: "Niemi, Liz"
<Liz.Niemi@NMB.NORWEST.COM>
Subject: Re: Quinceanera and Mid face
MIME-Version: 1.0
Content-Type: text/plain
Brenda,
Is Dr. Sayler also in Dallas??
Liz
-----Original Message-----
From: GSieb91515@AOL.COM
[SMTP:GSieb91515@AOL.COM]
Sent: Friday,
June 04, 1999 7:59 PM
To:
APERT@LISTSERV.AOL.COM
Subject:
Re: Quinceanera and Mid face
Liz--
I believe you are referring
to Dr. Fearon in Dallas. Also, Dr.
Salyer's
group is doing them.
Brenda
Houston
=========================================================================
Date: Fri, 4 Jun 1999
22:36:24 -0500
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From: Bart & Karla
Kenton <kenton@MAILHOST.DAILYNEWS.NET>
Subject: Re: Paul
MIME-Version: 1.0
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boundary="----=_NextPart_000_0026_01BEAEDA.AD416440"
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Hi Paul,
We are Bart & Karla Kenton from Hays, Kansas. We have
a 15 month old =
son Riley who has Aperts. Are you by chance the Paul we met in
Dallas a =
few months back? Welcome to the list serve. We mainly lurk,
but the =
information is nice.
Bart
-----Original Message-----
From: PAUL UHRIG <p.uhrig@WORLDNET.ATT.NET>
To: APERT@LISTSERV.AOL.COM <APERT@LISTSERV.AOL.COM>
Date: Friday, June 04, 1999 4:42 AM
=20
=20
HELLOI EVEYBODYmy name is paul uhrig and i have
aperts and just want =
to say welcome to my e-mail address is p-uhrig@excite .com so
send me a =
e-mail if you like i wuold like to talk to any body out there
------=_NextPart_000_0026_01BEAEDA.AD416440
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><!DOCTYPE HTML PUBLIC "-//W3C//DTD W3
=
HTML//EN">
<META content=3D'"MSHTML 4.72.2106.6"' name=3DGENERATOR>
</HEAD>
<BODY bgColor=3D#ffffff>
<DIV><FONT color=3D#000000 size=3D2>Hi Paul,</FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2></FONT><FONT size=3D2>
We are =
Bart &=20
Karla Kenton from Hays, Kansas. We have a 15 month old son
Riley =
who has=20
Aperts. Are you by chance the Paul we met in Dallas a few
months=20
back? Welcome to the list serve. We mainly lurk,
but the =
information=20
is nice.</FONT></DIV>
<DIV><FONT size=3D2></FONT> </DIV>
<DIV><FONT size=3D2>Bart</FONT></DIV>
<BLOCKQUOTE=20
style=3D"BORDER-LEFT: #000000 solid 2px; MARGIN-LEFT: 5px; PADDING-LEFT:
=
5px">
<DIV><FONT face=3DArial size=3D2><B>-----Original
=
Message-----</B><BR><B>From:=20
</B>PAUL UHRIG <<A=20
=
href=3D"mailto:p.uhrig@WORLDNET.ATT.NET">p.uhrig@WORLDNET.ATT.NET</A>>=
<BR><B>To:=20
</B><A =
href=3D"mailto:APERT@LISTSERV.AOL.COM">APERT@LISTSERV.AOL.COM</A>=20
<<A=20
=
href=3D"mailto:APERT@LISTSERV.AOL.COM">APERT@LISTSERV.AOL.COM</A>><BR>=
<B>Date:=20
</B>Friday, June 04, 1999 4:42 AM<BR><BR></DIV></FONT>
<DIV><FONT color=3D#000000 size=3D2>HELLOI
EVEYBODYmy name is paul =
uhrig and i=20
have aperts and just want to say welcome to my e-mail
address =
is=20
p-uhrig@excite .com so send me a e-mail if you like
i wuold like to =
talk to=20
any body out there</FONT></DIV></BLOCKQUOTE></BODY></HTML>
------=_NextPart_000_0026_01BEAEDA.AD416440--
=========================================================================
Date: Sat, 5 Jun 1999
02:34:14 EDT
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Lisa Guyette
<LAM1126@AOL.COM>
Subject: TO: Janine, Paul, Ruth plus
a question
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit
Janine,
Thank you for all of the information. If Samantha has trouble
with the mask
over her face, I won't feel so helpless with your advise about putting
it to
the side. Regarding the swellling. I saw a documentary
of a child with Down
Syndrome whose parents had plastic surgery done on him. This
has somewhat
prepared me for the swelling, bruising and eyes shut. But I'm
sure I won't
be prepared enough. I was watching Samantha happily playing on
her playmat
today and felt so bad that she doesn't know what is coming.
I'm really
grateful to be getting somewhat prepared with your help and everyone
else
that has responded to my email.
Ruth: Can't wait to hear about your daughter's big day.
Paul: Welcome to the network. My daughter Samantha has Apert
Syndrome. She
will be seven months next week. She will also be having her first
cranial
and first surgery next week. Look forward to hearing more about
and from you.
Samantha's neurosurgeon said that this surgery will not help her forehead.
Her plastic surgeon said it could. Has anyone else noticed if
any changes
came of the protruding forheard after the surgery to the back of the
head.
The reason why I'm asking is that Samantha is having such trouble doing
things because of the weight of the forhead. She can't keep her
head up very
long on tummy, in highchair, while I hold her, etc. I've had
to stop putting
her on her swing because she was only comfortable if she laid her head
to
side and was getting close to banging her head on back legs of her
swing.
We just feel that there might be hope of some balance if her brain
is able to
grow out the back to balance the front. I understand (finally)
that the size
of her forhead is an illusion due to the underdevelop midface.
Everyone have a good weekend.
Love, Lisa Guyette
=========================================================================
Date: Sat, 5 Jun 1999
06:37:22 EDT
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: BBarn60368@AOL.COM
Subject: Re: TO: Janine, Paul, Ruth plus
a question
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit
Lisa:
In response to your question regarding Samantha's forehead: I
remember my
Shirley could not hold her head up for a long time. I don't remember
how old
she was, but it was much longer than kids without Apert. It was
the large
size of her head and not her forehead, however. Her body eventually
grew to
"catch up" with her head and she started being able to hold her head
up.
Also, as Shirley grew, her head improved with maturity, as did her
breathing,
etc. Shirley's nose constantly ran for about the first 3 years
of her life.
Around 3 years, it stopped running.
We and our children go through so much the first 2 years of their
life, but
there is light at the end of the 2 year tunnel. So many things
simmer down
around this time; mainly the need for a surgery every two months.
Always love to you all,
Alice in Orlando, Fl.
=========================================================================
Date: Sat, 5 Jun 1999
07:11:04 EDT
Reply-To: Information exchange and Internet
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and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
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From: TFinch10@AOL.COM
Subject: Re: Incidence of Apert syndrome
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
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Hi all,
I just finished a project on the mutation that causes Apert syndrome
for a
biology class that I took last semester (I'm getting a master's to
teach high
school science). Very interesting stuff, at least for me. Most
researchers
put the incidence at 1/65,000 but as you guys have noticed the "official"
numbers vary. There are a couple of reasons, as I understand it...There
is no
national office that collects the data on those born with Apert syndrome.
Another reason is that a fetus may have the syndrome but not progress
to
birth. Sometimes incidence rates try to get at the total numbers of
conceptions with the syndrome, not simply babies born. One researcher
(Michael Cohen in Nova Scotia, I think) came up with the 1 in 65,000
by
analyzing birth records from one state. But for a condition as rare
as Apert,
the numbers from one large group may not generalize to the entire population.
Anyway, I like to think that these numbers tell us what we already
know--the
syndrome is rare and that there is uncertainty. Best--Jeanne, Nate's
mom in
Boston
=========================================================================
Date: Sat, 5 Jun 1999
08:26:35 EDT
Reply-To: Information exchange and Internet
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and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
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From: Jenngram@AOL.COM
Subject: Re: TO: Janine, Paul, Ruth plus
a question
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
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I don't know what your docs have told you to expect, but this first
surgery
dramatically changed Jordans forhead....it basically gave him one,
and also
an orbital bandeau (a place for the eyebrows to sit), an his plastic
surgeon
also built him a bridge for his nose, so there wouldn't be a gap. While
he
has recessed some, not nearly as bad as everyone predicted....no thay
may be
b/c his Dr. REALLY advanced his forhead to allow for future growth.
I can't
remember the amount, I think 3-5mm......Its been almost 1 1/2 yrs...and
8
surgeries ago, so my mind is fuzzy.
Also, as far as the surgery goes...NOTHING can prepare you for immediate
post-op...for me it was the swelling, not of the head, but of the
limbs....hands, feet, arms, and legs. I also put up a picture of Jordan
at
his bedside, so everyone would know what the "real " unswollen, no
black and
blue , no ventilator, IVs, etc...looked like.
He was a trooper....besides being a little fussy, he was only 5 months
though, we came home in 6 days, and he even continued to sleep through
the
night. Our worst problem was w/ reflux, and hopefully you don't have
that to
contend with...if so, I reccomnmend Zofran (keeps nausea and vomiting
at bay)
and lots of it!!! Although, even when Jordan outgrew his reflex, we
continued
w/ the Zofran. It really made the difference between him being alert,
happy
and ready to head home.....or miserable, not wanting to eat/drink,
or even
sit up. Within 3 minutes of putting it in his IV hes like a new person.
So I
reccommend it be given as they come out of anesthesia, like I said
when its
given this way, at least for Jordan, its like night and day.
God Luck to you...it'll be a long day, and a long 2-3 days in ICU, but
each
day things get a little better...and soon you'll be home and won't
believe
what happened a week ago!!
Jenn (Columbus, Ohio)
=========================================================================
Date: Sat, 5 Jun 1999
09:01:49 -0400
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Mechelle Holt
<MOM-POOH-of-2@WEBTV.NET>
Subject: Re: TO: Janine, Paul, Ruth plus
a question
In-Reply-To: Lisa Guyette <LAM1126@AOL.COM>'s message of Sat,
5 Jun 1999
02:34:14 EDT
Content-Type: Text/Plain; Charset=US-ASCII
Content-Transfer-Encoding: 7Bit
MIME-Version: 1.0 (WebTV)
Hi lisa,
When Courtney was in her swing, she done the same thing.
We rolled up
receiving blankets, and put one on each side of her, so she couldn't
bang her head. This worked for us!
Mechelle
=========================================================================
Date: Sat, 5 Jun 1999
20:49:07 EDT
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: ETolson643@AOL.COM
Subject: Re: Swimming
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit
Hello to all
Tim has certainly been keeping me busy these days...as are my other
two
children. Today Tim swim in a competition at Wheaton College
for the New
England WheelChair Champions. Although Tim is not in a wheelchair,
this
competition is open to anyone with a physical disability. Tim
qualified for
the nationals in freestyle and breaststroke. We are very proud of him.
I
don't have the details on when and where the nationals are...Tim said
it's in
New Mexico! Now that's a looong commute :) !!
My youngest son was in his first play last night and my daughter, who
is a
sophomore at Suffolk University, just completed a great season as starting
shortstop on the softball team. This spring has been busy but
fun for us.
After our recent losses of my Dad and my brother, this stuff keeps
me going.
Wish me luck on June 23rd; I am taking my comprehensive exams for my
Master's
Degree in School Administration!!! (This is in my spare time.)
Beth Tolson
=========================================================================
Date: Sat, 5 Jun 1999
22:03:50 +0000
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: "J. G. Lindamood"
<chanan8@JUNO.COM>
Subject: Scavenger Hunt
MIME-Version: 1.0
Content-Type: text/plain
Content-Transfer-Encoding: 7bit
Hi!
I have a huge favor to ask of you all. Here's the scoop:
My mom has been feeling guilty because she doesn't have a "magic wand"
to
wave over me to make me feel better. I have heard this every
time I talk
with her. The other day I told her I would find a "magic wand"
for her
so she would feel better and blame the "magic wand" if it doesn't work.
Well, I am also good at "redirecting". When my niece or nephews
are
interested in something they shouldn't be, I can redirect really well.
I
have applied the redirect theory to my predicament, taking my mind
off my
"down and out mood" with something else. This magic wand has
so far done
the trick. Pardon the pun.
Here's where my favor comes in. I am looking for one of those
tubes,
that looks like a science lab test tube. It has glitter and little
sparkle stuff floating in it. Some have had "Where's Waldo?"
(I don't
want that one). I cannot find any in a fifteen mile radius of
my home.
If any of you come across one of these things, I would be forever
grateful if you would get it to me. I will pay for it and the
shipping
plus some for the effort. Talk to me before you buy it though,
I have
seen some "look alikes" but not exactly what I want. Yes, I'm
the picky
one in my family. Thank you!
Joanne, on a mission in humid Ohio.
chanan8@juno.com
=========================================================================
Date: Sat, 5 Jun 1999
21:30:40 -0500
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Judy Amerman
<jamerman@UTI.COM>
Subject: apert chat
MIME-Version: 1.0
Content-Type: multipart/alternative;
boundary="----=_NextPart_000_0007_01BEAF9A.A9769D60"
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charset="iso-8859-1"
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this is just a reminder that tomorrow is chat night if anyone needs
to =
know. It starts at 8: central. See you there.
to all the beachbunnies. Just four more days for us. I am
packing =
tomorrow! guess I am excited, to be packing this far in advance.
i =
will see you all real soon.
i am going to be meeting with the Hill's and Liz at the airport in
=
Atlanta Wed. Just so you know, I am planning on kidnapping
Liz so we =
will be there with us. Ha!
I would like to extend a big welcome to Paul! so hello Paul,
you can =
always find a friend here! but please tell us more about you.
We =
don't know your age or anything but we do have Mark out there.
He is at =
the ripe old age of 35, so hopefully yu will hear from him. If
it rains =
where he lives, he may be on apert chat tomorrow. (Hey Mark,
Had to =
put my little dig in tonight, I have missed our little im's back
and =
forth)
Judy
jamerman@uti.com
------=_NextPart_000_0007_01BEAF9A.A9769D60
Content-Type: text/html;
charset="iso-8859-1"
Content-Transfer-Encoding: quoted-printable
<!DOCTYPE HTML PUBLIC "-//W3C//DTD HTML 4.0 Transitional//EN">
<HTML><HEAD>
<META content=3D"text/html; charset=3Diso-8859-1" =
http-equiv=3DContent-Type>
<META content=3D"MSHTML 5.00.2014.210" name=3DGENERATOR>
<STYLE></STYLE>
</HEAD>
<BODY bgColor=3D#ffffff>
<DIV><FONT face=3DArial size=3D2>this is just a reminder that
tomorrow =
is chat night=20
if anyone needs to know. It starts at 8: central.
See you=20
there.</FONT></DIV>
<DIV> </DIV>
<DIV><FONT face=3DArial size=3D2>to all the beachbunnies.
Just =
four more days=20
for us. I am packing tomorrow! guess I am excited,
to be =
packing=20
this far in advance. i will see you all real soon.</FONT></DIV>
<DIV><FONT face=3DArial size=3D2>i am going to be meeting with
the =
Hill's and Liz at=20
the airport in Atlanta Wed. Just so you know, I
am planning =
on=20
kidnapping Liz so we will be there with us. Ha!</FONT></DIV>
<DIV> </DIV>
<DIV><FONT face=3DArial size=3D2>I would like to extend a big
welcome to =
Paul! =20
so hello Paul, you can always find a friend here!
but please =
tell us=20
more about you. We don't know your age or anything
but we do =
have=20
Mark out there. He is at the ripe old age of 35, so hopefully
yu =
will hear=20
from him. If it rains where he lives, he may be on apert
chat=20
tomorrow. (Hey Mark, Had to put my little
dig in =
tonight, =20
I have missed our little im's back and forth)</FONT></DIV>
<DIV> </DIV>
<DIV><FONT face=3DArial size=3D2>Judy</FONT></DIV>
<DIV><FONT face=3DArial size=3D2><A=20
href=3D"mailto:jamerman@uti.com">jamerman@uti.com</A></FONT></DIV></BODY>=
</HTML>
------=_NextPart_000_0007_01BEAF9A.A9769D60--
=========================================================================
Date: Sun, 6 Jun 1999
01:48:49 EDT
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Lisa Guyette
<LAM1126@AOL.COM>
Subject: Thanks some more
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit
Beth: Good luck on your exams. That's so inspiring.
Alice: Thanks for the information. Samantha's problem is probably
with her
whole head too. It just seems like it's the forheard.
I'm glad to hear
that they grow into them. I feel so bad for her. Her mind
is telling her to
do these things like get head up from tummy and she gets so frusterated.
I
also never had a time period for most of these surgery. Now that
she's seven
months, two years doesn't seem so long anymore.
Jenn: Was this first surgery for Jordan to the back of the head?
That would
be wonderful if it helped her forhead. Regarding the bridge of
the nose, how
many times have you all heard "Hey, who's nose is that?"
Thanks for the tip
on the Zofran also.
Mechelle: Thanks I will do that with the receiving blankets.
She loves the
swing so much I really hated to stop her using it.
I can't tell you how wonderful it is to be able to come on the internet
and
have answers to things that worry me. We have a wonderful
family and friend
support, but with this rare syndrome and all it entails we are alone
yet
surrounded by so many. Even our doctors and therapists don't
have the
answers. But the experience of those who have been through it
are where we
get our answers. And I will do the same to those who come after
my
experiences. I cannot imagine what this must of be like
to the Sears and
all the others who didn't have this network when their children were
born.
While I was just writing, in the back of my mind is the worry of Samantha's
surgery, and I think I just got a sign from God. Her surgeon
was just
speaking on a telethon for Children's Hospitals. They showed
a little girl
he gave brain surgery to and she is doing great.
If I don't speak to you all before Samantha's surgery Wednesday am,
I just
want to wish all of those who are getting together next weekend a wonderful
time. And we look forward to joining you next year. I can't
wait to hear
all about it.
Love, Lisa Guyette
=========================================================================
Date: Sun, 6 Jun 1999
09:21:36 EDT
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Jenngram@AOL.COM
Subject: Re: Thanks some more
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
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No, Jordan didn't have any suture fusion beyond his bicoronal
(front).....now, I guess if the 1st surgery is the posterior release
there
would be no forhead changes!!
Jenn
=========================================================================
Date: Sun, 6 Jun 1999
18:47:55 -0500
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Randy & Deb
Picht <rldpicht@INFO.STARPOINT.NET>
Subject: picture exchange & reunion
we attended
MIME-Version: 1.0
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Hello Everyone,
Today we went back to the ICN (Intensive Care Nursery) reunion in Sioux
=
Falls, SD. I took along the pictures that I have gotten from
the =
picture exchange. The nurses and doctors thought this was just
=
wonderful. This reunion is always the same weekend as the CMN
Telethon. =
They did broadcast live from the reunion but Lisa did not want
to be on =
TV this year. She was too busy with her 1st mom (This is a nurse
who =
had Lisa alot when she was born and they have a special bond)
The doctors and nurses were so amazed at how all of these kids have
=
similarities. We just got Nicole Miller's picture on Friday and
I want =
to tell Jack and Raquel that Nicole and Lisa could pass as twins.
When =
Lisa was that age she looked just like Nicole. (Jack & Raquel
did you =
get a picture of Lisa?)
I told them that we are on a listserv and that there are alot of E-Mails
=
that come our way from other parents. They were just so happy
for us =
because Lisa is the only Aperts child they have ever had in that =
hospital. (They are well known also)
They said that the listserv must be somewhat of a support group and
I =
said it is. They could not believe that Lisa is going
to be 10 years =
old next month. (She is so tiny for her age). They told
us how =
wonderful she looked and that really made us feel good. There
were a =
couple of nurses that asked where Lisa was and she was standing right
=
next to us and they could not believe it was her. (Some of the
nurses =
had not seen her for a few years because they always have to work this
=
weekend and rarely get out to the reunion ) They did not recognize
her. =
Her appearance had changed so much since her last Cranialfacial
that =
she had done in 1997. =20
In Minnesota we are having an Aperts picnic and we are looking so =
forward to that. I have talked on the phone to 3 different families
=
(Niemi's, Thomas' and Hornings) and told them today that we are just
=
excited about the picnic. It will be fun to meet these people
in =
person.
They were surprised today to hear that we have come in contact with
so =
many different families through this listserv. (Thanks to you Don for
=
getting this set up) The doctors and nurses thought that all
of the =
kids were very cute. They all looked happy and I said this seems
to be =
a trend with these kids. I said also that I thought the majority
of =
them were thin like Lisa is too.
I will let you go but I thought I would share the comments today with
=
you all on the listserv. =20
Keep the pictures coming. They are wonderful.
Deb Picht
Marshall, MN =20
rldpicht@starpoint.net
=20
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<HTML>
<HEAD>
<META content=3Dtext/html;charset=3Diso-8859-1 =
http-equiv=3DContent-Type>
<META content=3D'"MSHTML 4.72.3510.1400"' name=3DGENERATOR>
</HEAD>
<BODY bgColor=3D#ffffff>
<DIV><FONT color=3D#000000 size=3D2>Hello Everyone,</FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2></FONT> </DIV>
<DIV><FONT color=3D#000000 size=3D2>Today we went back to the
ICN =
(Intensive Care=20
Nursery) reunion in Sioux Falls, SD. I took along the pictures
=
that I have=20
gotten from the picture exchange. The nurses and doctors
thought =
this was=20
just wonderful. This reunion is always the same weekend as
the CMN =
Telethon. They did broadcast live from the reunion but Lisa
did =
not want=20
to be on TV this year. She was too busy with her 1st mom
(This is =
a nurse=20
who had Lisa alot when she was born and they have a special =
bond)</FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2></FONT> </DIV>
<DIV><FONT size=3D2>The doctors and nurses were so amazed at
how all of =
these kids=20
have similarities. We just got Nicole Miller's picture on
Friday =
and I=20
want to tell Jack and Raquel that Nicole and Lisa could pass as =
twins. =20
When Lisa was that age she looked just like Nicole. (Jack
& =
Raquel did=20
you get a picture of Lisa?)</FONT></DIV>
<DIV><FONT size=3D2></FONT> </DIV>
<DIV><FONT size=3D2>I told them that we are on a listserv and
that there =
are alot=20
of E-Mails that come our way from other parents. They were
just so =
happy=20
for us because Lisa is the only Aperts child they have ever had in
that=20
hospital. (They are well known also)</FONT></DIV>
<DIV><FONT size=3D2></FONT> </DIV>
<DIV><FONT size=3D2>They said that the listserv must be somewhat
of a =
support=20
group and I said it is. They could not
believe that =
Lisa is=20
going to be 10 years old next month. (She is so tiny for
her =
age). =20
They told us how wonderful she looked and that really made us feel
=
good. =20
There were a couple of nurses that asked where Lisa was and she was
=
standing=20
right next to us and they could not believe it was her. (Some
of =
the=20
nurses had not seen her for a few years because they always have to
work =
this=20
weekend and rarely get out to the reunion ) They did not
recognize =
her. Her appearance had changed so much since her last =
Cranialfacial that=20
she had done in 1997. </FONT></DIV>
<DIV><FONT size=3D2></FONT> </DIV>
<DIV><FONT size=3D2>In Minnesota we are having an Aperts picnic
and we =
are looking=20
so forward to that. I have talked on the phone to 3 different
=
families=20
(Niemi's, Thomas' and Hornings) and told them today that we are just
=
excited=20
about the picnic. It will be fun to meet these people in=20
person.</FONT></DIV>
<DIV><FONT size=3D2></FONT> </DIV>
<DIV><FONT size=3D2>They were surprised today to hear that we
have come =
in contact=20
with so many different families through this listserv. (Thanks to you
=
Don for=20
getting this set up) The doctors and nurses thought that
all of =
the kids=20
were very cute. They all looked happy and I said this seems
to be =
a trend=20
with these kids. I said also that I thought the majority
of them =
were thin=20
like Lisa is too.</FONT></DIV>
<DIV><FONT size=3D2></FONT> </DIV>
<DIV><FONT size=3D2>I will let you go but I thought I would share
the =
comments=20
today with you all on the listserv. </FONT></DIV>
<DIV><FONT size=3D2></FONT> </DIV>
<DIV><FONT size=3D2>Keep the pictures coming. They
are=20
wonderful.</FONT></DIV>
<DIV><FONT size=3D2></FONT> </DIV>
<DIV><FONT size=3D2>Deb Picht</FONT></DIV>
<DIV><FONT size=3D2>Marshall, MN </FONT></DIV>
<DIV><FONT size=3D2><A=20
href=3D"mailto:rldpicht@starpoint.net">rldpicht@starpoint.net</A></FONT><=
/DIV>
<DIV><FONT size=3D2></FONT> </DIV>
<DIV><FONT size=3D2></FONT> </DIV>
<DIV> </DIV>
<DIV><FONT size=3D2></FONT> </DIV>
<DIV><FONT size=3D2> </FONT></DIV></BODY></HTML>
------=_NextPart_000_0010_01BEB04D.16AC17E0--
=========================================================================
Date: Sun, 6 Jun 1999
22:55:30 EDT
Reply-To: Information exchange and Internet
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Sender: Information exchange and
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From: GSieb91515@AOL.COM
Subject: Re: Thanks some more
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit
Lisa--
Jonathan's first surgery at 5 months was to release the coronal sutures
and
do a forehead and orbital advancement. They too built a bridge
for his nose.
Jonathan's 1st forehead advancement was 11 mil. The second
surgery (total
cranial vault--they put the back of his skull on the front and the
front on
the back) they advanced the forehead 20 ml. They also lowered the heigth
of
his head about 1 1/2 inches. Sam's balance will improve with
time. I know
Jonathan seemed top heavy before he started walking but all of a sudden
he
become more poised and in better control of his head at around 6-9
months.
We will be praying for you on Wed.
Brenda
=========================================================================
Date: Sun, 6 Jun 1999
22:55:26 EDT
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Sender: Information exchange and
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From: GSieb91515@AOL.COM
Subject: Re: Incidence of Apert syndrome
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit
Jeanne--
Thanks for the info. What other interesting things regarding causes
of the
mutation did you learn that might be of interest to us? I'm always
seeking
more info. in this area even though I know I should just accept what
all the
professionals have told me "they don't know what causes the mutation"
and put
it to rest. The analytical part of me craves more info.
Feel free to email
me directly if you prefer.
Brenda
=========================================================================
Date: Sun, 6 Jun 1999
22:55:27 EDT
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From: GSieb91515@AOL.COM
Subject: Re: Swimming
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit
Beth--
It sounds like you have alot to be happy about these days. There's
nothing
like those proud moments when our kids are shining. Best of luck
to you on
your exams. I keep thinking I'd like to go back to school in
my spare time
but I think I'll wait until Jonathan is at least in first grade.
I'll be 45
then, is that crazy of what?
Brenda
=========================================================================
Date: Sun, 6 Jun 1999
22:55:25 EDT
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From: GSieb91515@AOL.COM
Subject: Re: Quinceanera and Mid face
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit
Liz,
Dr. Salyer is a world reknown cranialfacial plastic surgeon in Medical
City,
Dallas. It is the same cranialfacial foundation as Dr. Fearon.
Their
offices are just a few doors from each other but they are separate
practices.
Dr. Fearon took over for Dr. Monroe when he retired and Dr. Salyer
and Dr.
Monroe were partners many years ago. Dr. Salyer trained with
Dr. Tessier
from France as well. I can't say enough about Dr. Salyer's experience
and
knowledge in the cranialfacial dept. Let me know if you need
any specific
information.
Brenda
=========================================================================
Date: Sun, 6 Jun 1999
23:00:08 EDT
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From: GSieb91515@AOL.COM
Subject: Re: picture exchange & reunion
we attended
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit
Thanks for sharing your special day. It sounds like a very rewarding
experience.
Brenda
Houston
=========================================================================
Date: Sun, 6 Jun 1999
23:11:15 EDT
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From: GSieb91515@AOL.COM
Subject: Kris' Quinceanera
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit
We were honored to be a quest at Kris' special day and I have to tell
everyone how absolutely beautiful she looked. The entire ceremony
and
reception was as lovely as a wedding and I can't imagine having to
top this.
A video was shown of Kris' past 15 years and I cried so much you would
have
thought it was my daughter.
Kris was given a wonderful surprise trip to Disneyworld by her parents
and
was very excited.
Just wanted to share a very special day with a very special family.
Brenda
Ruth--Thank you so much and get some much deserved R and R on your trip.
Hope to see photos later.
=========================================================================
Date: Mon, 7 Jun 1999
08:03:55 EDT
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From: Jenngram@AOL.COM
Subject: Re: Thanks some more
MIME-Version: 1.0
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Lisa,
Just to let you know, I looked up Jordans records and his orbital advancement
was 13mm. One of those thngs that was bugging me that I couldn't remember.
Good Luck...we'll be thinking of ya'll
Jenn
=========================================================================
Date: Mon, 7 Jun 1999
12:18:04 -0400
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Comments: RFC822 error: <W> Incorrect or
incomplete address field found and
ignored.
From: Andrea Gartner
<agartner@PEGANET.NET>
Subject: I'M HOME
MIME-Version: 1.0
Content-Type: multipart/alternative;
boundary="----=_NextPart_000_000A_01BEB0DF.CB59AD00"
This is a multi-part message in MIME format.
------=_NextPart_000_000A_01BEB0DF.CB59AD00
Content-Type: text/plain;
charset="iso-8859-1"
Content-Transfer-Encoding: quoted-printable
Hi everyone,
I'm finally home! I came back from the hospital Saturday night
=
actually. I am doing pretty good. I am very shocked with
the results. =
In fact Dr. Wolfe did more then we thought he would. I still
have =
stitches in the corner of my eyes so I can't really see the actual
=
result there. Hopefully, Im going to have them removed Wednsday.
=20
My cat Bear, was giving me the longest stare today. I think he's
=
realizing somethings different about me.
I hope everyone is doing well. I got 116+ messages that I'm looking
=
forward to reading. Thank you all for keeping me in your prayers.
It =
helped a lot!
HAVE FUN IN MYRTLE BEACH!=20
-Andrea
=20
------=_NextPart_000_000A_01BEB0DF.CB59AD00
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 size=3D2>Hi everyone,</FONT></DIV>
<DIV><FONT size=3D2></FONT> </DIV>
<DIV><FONT size=3D2>I'm finally home! I came back from
the =
hospital Saturday=20
night actually. I am doing pretty good. I am very
shocked =
with the=20
results. In fact Dr. Wolfe did more then we thought he =
would. I=20
still have stitches in the corner of my eyes so I can't really see
the =
actual=20
result there. Hopefully, Im going to have them removed=20
Wednsday. </FONT></DIV>
<DIV> </DIV>
<DIV><FONT color=3D#000000 size=3D2>My cat Bear, was giving me
the =
longest stare=20
today. I think he's realizing somethings different about
=
me.</FONT></DIV>
<DIV><FONT size=3D2>I hope everyone is doing well.
I got 116+ =
messages that=20
I'm looking forward to reading. Thank you all for keeping
me in =
your=20
prayers. It helped a lot!</FONT></DIV>
<DIV><FONT size=3D2></FONT> </DIV>
<DIV><FONT size=3D2>HAVE FUN IN MYRTLE BEACH! </FONT></DIV>
<DIV><FONT size=3D2></FONT> </DIV>
<DIV><FONT size=3D2>-Andrea</FONT></DIV>
<DIV> </DIV>
<DIV><FONT size=3D2> </FONT></DIV></BODY></HTML>
------=_NextPart_000_000A_01BEB0DF.CB59AD00--
=========================================================================
Date: Mon, 7 Jun 1999
13:49:47 EDT
Reply-To: Information exchange and Internet
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Sender: Information exchange and
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From: Sandra Jones
<AJones7692@AOL.COM>
Subject: Fwd: (no subject)
MIME-Version: 1.0
Content-Type: multipart/mixed; boundary="part1_749951e5.248d603b_boundary"
--part1_749951e5.248d603b_boundary
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit
--part1_749951e5.248d603b_boundary
Content-Type: message/rfc822
Content-Disposition: inline
Return-path: AJones7692@aol.com
From: AJones7692@aol.com
Full-name: AJones7692
Message-ID: <749951e5.248d5e8d@aol.com>
Date: Mon, 7 Jun 1999 13:42:37 EDT
Subject: (no subject)
To: listserv@listserv.aol.com
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit
X-Mailer: AOL 4.0.i for Windows 95 sub 134
Hi,
I've been lurking in the background, reading all the e mails, my son
Richard
has aperts, he is due for more surgery on his mid face . Which the
doctors
now tell will be carried out when he is 12yrs old , do they have different
time scales from where you are from? We are from Wales in the United
Kingdom.
He also has to have an operation on his knee this year , due to his
joint not
supporting his knee cap , Would anyone have a similar problem .
Thanks for a great Web Site , Thanks for all the replys I have had,
i mainly
just hang around reading all the mail. Its great to hear from other
family's.
Sandra , Andrew, Boys.
--part1_749951e5.248d603b_boundary--
=========================================================================
Date: Mon, 7 Jun 1999
15:01:30 -0500
Reply-To: Information exchange and Internet
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Sender: Information exchange and
Internet safe haven for Apert Syndrome
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From: Judy Amerman
<jamerman@UTI.COM>
MIME-Version: 1.0
Content-Type: multipart/alternative;
boundary="----=_NextPart_000_001F_01BEB0F6.A05AC820"
This is a multi-part message in MIME format.
------=_NextPart_000_001F_01BEB0F6.A05AC820
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charset="iso-8859-1"
Content-Transfer-Encoding: quoted-printable
Andrea,
It's great to hear your're home and doing fine. Have a speedy recovery!
Judy
jamerman@uti.com
------=_NextPart_000_001F_01BEB0F6.A05AC820
Content-Type: text/html;
charset="iso-8859-1"
Content-Transfer-Encoding: quoted-printable
<!DOCTYPE HTML PUBLIC "-//W3C//DTD HTML 4.0 Transitional//EN">
<HTML><HEAD>
<META content=3D"text/html; charset=3Diso-8859-1" =
http-equiv=3DContent-Type>
<META content=3D"MSHTML 5.00.2014.210" name=3DGENERATOR>
<STYLE></STYLE>
</HEAD>
<BODY bgColor=3D#ffffff>
<DIV><FONT face=3DArial size=3D2>Andrea,</FONT></DIV>
<DIV> </DIV>
<DIV><FONT face=3DArial size=3D2>It's great to hear your're home
and =
doing=20
fine. Have a speedy recovery!</FONT></DIV>
<DIV> </DIV>
<DIV><FONT face=3DArial size=3D2>Judy</FONT></DIV>
<DIV><FONT face=3DArial size=3D2><A=20
href=3D"mailto:jamerman@uti.com">jamerman@uti.com</A></FONT></DIV></BODY>=
</HTML>
------=_NextPart_000_001F_01BEB0F6.A05AC820--
=========================================================================
Date: Mon, 7 Jun 1999
17:56:17 EDT
Reply-To: Information exchange and Internet
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Sender: Information exchange and
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From: Edelman Member
<CoH1862@AOL.COM>
Subject: Re: Welcom Paul
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit
Welcome Paul,
My daughter Mallory is 12. We live in Tennessee.
Diane in hot and muggy Tn.
=========================================================================
Date: Mon, 7 Jun 1999
18:15:03 +0000
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From: "J. G. Lindamood"
<chanan8@JUNO.COM>
Subject: Scavenger Hunt - Success!
MIME-Version: 1.0
Content-Type: text/plain
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Hello Everybody!
Welcome Home Andrea! And congratulations to Kris! cant wait to
see the
pictures!
It's amazing what a little toy can do for your soul. Even though
I don't
actually have the coveted "magic wand" I am getting close and my morale
is boosted. I have located two places that carries the
wands. Amy in
Columbus directed me to a toy store that carries the wands with a
kaleidoscope to boot. Thanks Amy! Plus there's a small
toy store near
here that carries them, but are currently out of stock. So, before
I get
swamped with info, I'm calling the hunt a success and will let you
know
when I get the silly thing! You all out there in Columbus, want
to meet
at The Continent any time soon????
I had my first appointment with my counselor today, there's another
place
to go to feel better. I don't know what it is about people with
degrees
in psychology, but they do know what buttons to push to help you feel
better! I have been challenged, which is what I needed, and there
is a
faint light at the end of the tunnel!
Joanne in, where did this humidity come from?, Ohio.
=========================================================================
Date: Mon, 7 Jun 1999
17:25:16 -0500
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From: "Niemi, Liz"
<Liz.Niemi@NMB.NORWEST.COM>
Subject: Re: I'M HOME
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
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Andrea,
We would love to see the results!! Anytime you can send us pictures,
or
have Don post them on Teeter's page would be wonderful. Take
care of
yourself, and recover quickly. Glad to hear you're doing well.
Liz Niemi and Family (son Jake 19 mos. w/Aperts)
-----Original Message-----
From: Andrea
Gartner [SMTP:agartner@PEGANET.NET]
Sent: Monday,
June 07, 1999 11:18 AM
To:
APERT@LISTSERV.AOL.COM
Subject:
I'M HOME
Hi everyone,
I'm finally home! I
came back from the hospital Saturday night
actually. I am doing pretty good. I am very shocked with
the results. In
fact Dr. Wolfe did more then we thought he would. I still have
stitches in
the corner of my eyes so I can't really see the actual result there.
Hopefully, Im going to have them removed Wednsday.
My cat Bear, was giving me
the longest stare today. I think he's
realizing somethings different about me.
I hope everyone is doing
well. I got 116+ messages that I'm looking
forward to reading. Thank you all for keeping me in your prayers.
It
helped a lot!
HAVE FUN IN MYRTLE BEACH!
-Andrea
=========================================================================
Date: Mon, 7 Jun 1999
17:33:40 -0500
Reply-To: Information exchange and Internet
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Sender: Information exchange and
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From: "Niemi, Liz"
<Liz.Niemi@NMB.NORWEST.COM>
Subject: To the Hornings - Ortho Doctor
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
Mary and Bob Horning:
Just wanted to say thank you for the nice card regarding my father-in-law.
We're really excited to see you guys at the picnic next month.
By the way,
we just took Jake to see Dr. Sundberg today. He's really a nice
guy. He
told me Krista is one of his patients (well, actually I guessed).
Seems
like we won't be needing to do anything with Jake's feet, at least
not for
awhile. Where do you buy shoes for Krista? Dr. Sundberg
suggested
Nordstroms at the Mall of America.
Again, thanks for the very nice card. I liked Andrew's signature:-) !!
Liz Niemi and Family
=========================================================================
Date: Mon, 7 Jun 1999
19:20:05 -0400
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From: Jack and Raquel
<jara1@BELLSOUTH.NET>
Subject: Re: picture exchange & reunion
we attended
MIME-Version: 1.0
Content-Type: multipart/alternative;
boundary="------------3482627D1411555946B0A1A5"
--------------3482627D1411555946B0A1A5
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
Yes, Deb we received Lisa's picture and she is a lovely girl.
It is
amazing how alike our kids look. Obviously the kids in the picture
exchange look more like they would be Nicole's brothers or sisters
than
her true siblings. Every time we get a new picture my husband
and I
comment on how much that child resembles Nicki.
Take care,
Raquel.....
Randy & Deb Picht wrote:
> Hello Everyone, The doctors and nurses were so amazed
at how all of
> these kids have similarities. We just got Nicole Miller's picture
on
> Friday and I want to tell Jack and Raquel that Nicole and Lisa could
> pass as twins. When Lisa was that age she looked just like
Nicole.
> (Jack & Raquel did you get a picture of Lisa?)
--------------3482627D1411555946B0A1A5
Content-Type: text/html; charset=us-ascii
Content-Transfer-Encoding: 7bit
<HTML>
<BODY BGCOLOR="#FFFFFF">
Yes, Deb we received Lisa's picture and she is a lovely girl.
It
is amazing how alike our kids look. Obviously the kids in
the picture
exchange look more like they would be Nicole's brothers or sisters
than
her true siblings. Every time we get a new picture my husband
and
I comment on how much that child resembles Nicki.
<P>Take care,
<P>Raquel.....
<P>Randy & Deb Picht wrote:
<BLOCKQUOTE TYPE=CITE> <FONT COLOR="#000000"><FONT
SIZE=-1>Hello Everyone,</FONT></FONT> <FONT COLOR="#000000"><FONT
SIZE=-1></FONT></FONT> <FONT SIZE=-1>The
doctors and nurses were so amazed at how all of these kids have similarities.
We just got Nicole Miller's picture on Friday and I want to tell Jack
and
Raquel that Nicole and Lisa could pass as twins. When Lisa
was that
age she looked just like Nicole. (Jack & Raquel did
you get a
picture of Lisa?)</FONT> <FONT SIZE=-1> </FONT></BLOCKQUOTE>
</BODY>
</HTML>
--------------3482627D1411555946B0A1A5--
=========================================================================
Date: Mon, 7 Jun 1999
19:31:43 -0400
Reply-To: Information exchange and Internet
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From: Jack and Raquel
<jara1@BELLSOUTH.NET>
Subject: Welcome Home Andrea
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
Andrea,
So glad to hear that you are home and doing well. I'm glad everything
turned out and that Dr. Wolfe was able to do more than expected.
Maybe
next time you come down to Miami for a follow up visit or something
we
can get together and meet. Anyway a wish for a speedy recovery
is
coming your way from the Miller family.
GET WELL SOON....
Raquel in rainy south Florida...
=========================================================================
Date: Mon, 7 Jun 1999
19:36:42 -0400
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From: Jack and Raquel
<jara1@BELLSOUTH.NET>
Subject: Count Down
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
Count down for Myrtle Beach.....we are soooo excited....Just a quick
question for the South Carolinians out there (Cat/Don) how's the weather
up there??? Do you guys have any idea if funky weather might be
developing.....We are really rainy down here in South FLA.......I hope
we get a lot of that South Carolina sun...If not Judy will have us
all
beat with her I got a sun tan a few days in advance....(cheater).....
See you all there...
Raquel Miller...
=========================================================================
Date: Mon, 7 Jun 1999
19:55:09 EDT
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From: Irmocat2@AOL.COM
Subject: Re: Count Down
MIME-Version: 1.0
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We are all sooo excited, too!! So far the weather here has been
good. It's
not really that hot - around 90-95 here in Columbia. Myrtle Beach
is usually
a bit cooler. I have not watched the news lately since I had
to work all
weekend, but on Friday, they were still calling for 90+ weather through
Tuesday. We are under a pre-drought situation in our state, so
they are
asking everyone to conserve water. It hasn't rained here in a
long time.
When it does rain at the beach, it is usually just a late afternoon
thunderstorm which passes quickly. I will check my local forecast
tonight
and let you know what to expect for the next 5 days anyway. I
can't wait to
meet you and everyone else!!! I will make this an annual event,
even if it's
just a few people. So anyone not going, make your plans now for
next year!!!
Can't wait, can't wait, can't wait......
Love,
Cathie
=========================================================================
Date: Mon, 7 Jun 1999
20:17:15 EDT
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From: Irmocat2@AOL.COM
Subject: Re: Count Down
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit
Hi Raquel, it's me again. I just checked my local forecast and it will
be in
the mid 90's through Friday with a chance of an isolated thundershower
on
Friday. This forecast is for Columbia of course, but we are only
2 hrs and
45 mins. from Myrtle Beach, so the weather will be about the same.
I will
say it again......
I can't wait, I can't wait, I can't wait.....
=========================================================================
Date: Mon, 7 Jun 1999
21:38:25 EDT
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Patbrat718@AOL.COM
Subject: Re: APERT Digest - 3 Jun 1999
to 4 Jun 1999 (#1999-154)
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit
Hi All, Patti from California here......
It's been a long time, lately just been lurking. I wanted to
let you all
know that Jasmyn has had her mid-face, using the distractor device
design by
Dr, Steve Cohen.
We had a nice blessing in that he came into town to do the surgery
himself.
She is three days out of surgery now, and getting ready to be released
from
ICU. She did have to have a transfusion for 2 pints during surgery,
but so
far all else is fine. Please keep her in your prayers.
I haven't said
anything prior because I was afraid of jinxing the whole thing.
This surgery
was cancelled 5 times prior to getting it done!! Back to the
hospital I
go...... :)
=========================================================================
Date: Mon, 7 Jun 1999
21:50:07 EDT
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: GSieb91515@AOL.COM
Subject: Re: I'M HOME
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit
Andrea--
Way to go girl! We're so happy for you. It sounds like everything
went well
and that you are feeling okay. Best wishes for your continued
recovery.
Brenda
Houston
=========================================================================
Date: Mon, 7 Jun 1999
21:58:23 EDT
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: GSieb91515@AOL.COM
Subject: Re: APERT Digest - 3 Jun 1999
to 4 Jun 1999 (#1999-154)
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit
Patti--
Wishing you some rest and glad you were able to share the news with
us.
Jasmyn looked so wonderful in the photos from last year I didn't even
realize
she was due for a midface. Sorry you had to go through all those
cancellations. That is very frustrating for all concerned.
It sounds like
all went well and we will be anxious for an update.
Brenda
Houston
=========================================================================
Date: Mon, 7 Jun 1999
21:37:49 -0500
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Judy Amerman
<jamerman@UTI.COM>
Subject: Re: Count Down
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
Content-Transfer-Encoding: 7bit
For the beach crew, You can go to www.accuweather.com and get
the five day
forcast. I checked it earlier today and it looks real good.
Mid 80's for
the five day I seen tody with no major rain.
Yes everyone, I HAVE cheated on my tan, I had to,
I can tan here but the
sun works much better with me in the south. My bags are pretty
much packed
and I am ready!!!!! See yu soon 'my family"
Judy
----- Original Message -----
From: Jack and Raquel <jara1@BELLSOUTH.NET>
To: <APERT@LISTSERV.AOL.COM>
Sent: Monday, June 07, 1999 6:36 PM
Subject: Count Down
> Count down for Myrtle Beach.....we are soooo excited....Just a quick
> question for the South Carolinians out there (Cat/Don) how's the
weather
> up there??? Do you guys have any idea if funky weather might be
> developing.....We are really rainy down here in South FLA.......I
hope
> we get a lot of that South Carolina sun...If not Judy will have us
all
> beat with her I got a sun tan a few days in advance....(cheater).....
>
> See you all there...
>
> Raquel Miller...
>
=========================================================================
Date: Mon, 7 Jun 1999
21:41:46 -0500
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Judy Amerman
<jamerman@UTI.COM>
Subject: Jasmyn
MIME-Version: 1.0
Content-Type: multipart/alternative;
boundary="----=_NextPart_000_0028_01BEB12E.8AC79460"
This is a multi-part message in MIME format.
------=_NextPart_000_0028_01BEB12E.8AC79460
Content-Type: text/plain;
charset="iso-8859-1"
Content-Transfer-Encoding: quoted-printable
Patti,
Tell that beautiful little girl that we are rooting for her in Illinois!
=
Have a speedy recovery!
Judy
jamerman@uti.com
------=_NextPart_000_0028_01BEB12E.8AC79460
Content-Type: text/html;
charset="iso-8859-1"
Content-Transfer-Encoding: quoted-printable
<!DOCTYPE HTML PUBLIC "-//W3C//DTD HTML 4.0 Transitional//EN">
<HTML><HEAD>
<META content=3D"text/html; charset=3Diso-8859-1" =
http-equiv=3DContent-Type>
<META content=3D"MSHTML 5.00.2014.210" name=3DGENERATOR>
<STYLE></STYLE>
</HEAD>
<BODY bgColor=3D#ffffff>
<DIV><FONT face=3DArial size=3D2>Patti,</FONT></DIV>
<DIV> </DIV>
<DIV><FONT face=3DArial size=3D2>Tell that beautiful little girl
that we =
are rooting=20
for her in Illinois! Have a speedy recovery!</FONT></DIV>
<DIV> </DIV>
<DIV><FONT face=3DArial size=3D2>Judy</FONT></DIV>
<DIV><FONT face=3DArial size=3D2><A=20
href=3D"mailto:jamerman@uti.com">jamerman@uti.com</A></FONT></DIV></BODY>=
</HTML>
------=_NextPart_000_0028_01BEB12E.8AC79460--
=========================================================================
Date: Mon, 7 Jun 1999
23:00:04 -0600
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: cgraham <cgraham@INFOAVE.NET>
Subject: Daryl's tendon transplant
MIME-version: 1.0
Content-type: text/plain; charset="us-ascii"
Hello everyone! Sorry I have not responded lately, but we have
been
swamped here with vacation bible school, ballgames, and etc.
Daryl is doing great!
The tendon transplant took about 2 hrs and
it worked!!!! This is the first time his thumbs have healed apart
from the
fingers. We did the right thumb first. I was always agressive
in his
wrapping of his hands, but his web space was so tight and would almost
immediatley adhere together. His thumb would not move away from
the other
fingers and eventually the grafts would grow together. His thumb
looks
great and has a deep web space! I am so excited, and can't wait
to do his
left thumb in the fall! We are wanting to have a normal summer
this year.
Thanks to everyone for keeping us in your thoughts!
Denise Graham
=========================================================================
Date: Mon, 7 Jun 1999
22:56:50 -0500
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: "Niemi, Liz"
<Liz.Niemi@NMB.NORWEST.COM>
Subject: Re: APERT Digest - 3 Jun 1999
to 4 Jun 1999 (#1999-154)
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
Hi Patti!
Glad to hear surgery was able to take place. It's so hard when
things get
cancelled like that. Take care of yourself and Jasmyn too.
We all know
how exhausting hospital stays can be. We'll be thinking and praying
for you
both.
Liz Niemi and Family
-----Original Message-----
From: Patbrat718@AOL.COM
[SMTP:Patbrat718@AOL.COM]
Sent: Monday,
June 07, 1999 8:38 PM
To:
APERT@LISTSERV.AOL.COM
Subject:
Re: APERT Digest - 3 Jun 1999 to 4 Jun 1999
(#1999-154)
Hi All, Patti from California
here......
It's been a long time, lately
just been lurking. I wanted to let
you all
know that Jasmyn has had
her mid-face, using the distractor device
design by
Dr, Steve Cohen.
We had a nice blessing in
that he came into town to do the surgery
himself.
She is three days out of
surgery now, and getting ready to be
released from
ICU. She did have
to have a transfusion for 2 pints during surgery,
but so
far all else is fine.
Please keep her in your prayers. I haven't
said
anything prior because I
was afraid of jinxing the whole thing.
This surgery
was cancelled 5 times prior
to getting it done!! Back to the
hospital I
go...... :)