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>
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=========================================================================
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
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: TFinch10@AOL.COM
Subject: Re: Incidence of Apert syndrome
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit
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