Hi Karen,
My son Derek is four years old and has been followed
by an opthmologist
since birth. We get him checked every 3-4 months. Our doctor
has been very
concerned with the pressure upon the optic nerve and keeps a close
watch on
Derek's vision. This summer, Derek's vision decreased to 20\60
in both
eyes. She immediatley wanted a ct scan which showed the pressure
was
increased in Derek's brain. He had a cranial facial surgery in
Aug. and
since then his vision has improved to 20\20. I think that it
is very
important to keep up to date on vision checks due to a high risk of
blindness in our kiddos(according our opthamologist). Just another
thing to
worry about at night when your trying to sleep.
=========================================================================
Date: Wed, 9 Dec 1998
09:21:37 EST
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From: Liz Saylan <LSaylan@AOL.COM>
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Hi!
I thought I would pop in
and say Hello and Wish Everyone a Happy Holiday! I
have been so busy and I am sorry I haven't written many emails lately.
Will
try to keep better in touch with everyone, hope all is well.
Take Care!
Liz
=========================================================================
Date: Wed, 9 Dec 1998
10:50:49 EST
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From: NephiRose@AOL.COM
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Anybody out there? It's been a while. Miss you all.
Hope you are having a
wonderful holiday.
Belinda
=========================================================================
Date: Wed, 9 Dec 1998
23:02:10 -0500
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From: foster <foster@ICONTECH.COM>
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Wow what a weird feeling to see so few E-mails in one week. Sure hope
that
it means everyone is doing so well that there is nothing to say or
everyone
is busy geting ready for the big 25th.
Things in our house have been anything but quiet. We have had
a really bad
stomache virus that has hit 8 out of the 9 of us so far. It only lasts
two
or three days but it hits hard and knocks you off your feet. Billy
has
another ear infection so it is taking him a little longer to bounce
back.
Friday is the early intervention Christmas party and I hope Billy will
be
well enough to go. They have a nice dinner, a magic show and Santa
is there
to have pictures taken. All of the kids get a present from Santa and
there
is lots of stories and music. I hope the programs in all of your towns
have
as great a party as ours.
Well, since things are so slow on the server maybe some of you guys
have
some good ideas on Christmas toys or other gifts for different age
groups.
There are so many things out there that it is hard to pick and sometimes
we
miss out on something that would be good fun and benifical to our kids.I
am
not saying write lists and lists of toys we all know about
but, maybe one
or two things that you may have found that someone else may not have
thought
of or that you think enough of to suggest to others. This is just a
suggestion so.
Thinking of everyone and hope all is well.
Karen (PA)
=========================================================================
Date: Thu, 10 Dec 1998
02:21:12 EST
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From: Lisa Guyette
<LAM1126@AOL.COM>
Subject: Samantha Guyette
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My name is Lisa Guyette and my husband Richard and I had a daugher on
November
11, 1998 named Samantha who has Apert Syndrome. We live in Oxnard
California.
We are currently having consults at Children's Hospital in Los Angeles
and
then will go for a second oppinion to UCLA.
While I'll have a lot of questions the one I'm concern with today is
her eyes.
She doesn't close them all the way. I read that this will cause
them to dry
out and bring vision problems. I asked her pedetrician today
and he said that
I might want to put saline drops at night. Samantha is his first
Apert child.
I read that these children should have special drops. Is
there a special eye
drop that many apert children use?
Thanks for your help and I look forward to speaking and learning from
you.
Something that I will pass on to other newer parents.
Lisa Guyette
PS Also to any of my family and friends that took the time to subscribe
here
to learn for us and themselves, thank you so much it means so much
to us.
=========================================================================
Date: Thu, 10 Dec 1998
07:40:33 -0500
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From: Colleen Jones
<coljones@PTDPROLOG.NET>
Subject: eyedrops
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Lisa,
We use Lacrilube or Refresh P.M. for Jacob's eyes at night (Jacob is
2).
We prefer the ointment and it does seem to help. Both had been
recommended
by his Eye doc. Hope this helps.
Colleen Jones
PA
coljones@ptdprolog.net
=========================================================================
Date: Thu, 10 Dec 1998
09:15:36 EST
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From: Jenngram@AOL.COM
Subject: Santas wish
Comments: To: t_darbonne@hotmail.com, PMTOMAS@aol.com, nolph@computerland.net
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Thought this one was a good one to pass along
Merry Christmas
Jenn
Santa's Secret Wish
by Betty Werth
On Christmas Eve, a young boy with light in his eyes
Looked deep into Santa's, to Santa's surprise
And said as he sat on Santa's broad knee,
I want your secret. Tell it to me."
He leaped up and whispered in Santa's good ear
How do you do it, year after year?"
"I want to know how, as you travel about,
Giving gifts here and there, you never run out.
How is it, Dear Santa, that in your pack of toys
You have plenty for all of the world's girls and boys?
Stays so full, never empties, as you make your way
From rooftop to rooftop, to homes large and small,
From nation to nation, reaching them all?"
And Santa smiled kindly and said to the boy,
"Don't ask me hard questions. Don't you want a toy?"
But the child shook his head, and Santa could see
That he needed the answer. "Now listen to me,"
He told that small boy with the light in his eyes,
"My secret will make you sadder and wise.
"The truth is that my sack is magic. Inside
It holds millions of toys for my Christmas Eve ride.
But although I do visit each girl and each boy
I don't always leave them a gaily wrapped toy.
Some homes are hungry, some homes are sad,
Some homes are desperate, some homes are bad.
Some homes are broken, and the children there grieve.
Those homes I visit, but what should I leave?
"My sleigh is filled with the happiest stuff,
But for homes where despair lives toys aren't enough.
So I tiptoe in, kiss each girl and boy,
And I pray with them that they'll be given the joy
Of the spirit of Christmas, the spirit that lives
In the heart of the dear child who gets not, but gives.
"If only God hears me and answers my prayer,
When I visit next year, what I will find there
Are homes filled with peace, and with giving, and love
And boys and girls gifted with light from above.
It's a very hard task, my smart little brother,
To give toys to some, and to give prayers to others.
But the prayers are the best gifts, the best gifts indeed,
For God has a way of meeting each need.
"That's part of the answer. The rest, my dear youth,
Is that my sack is magic. And that is the truth.
In my sack I carry on Christmas Eve day
More love than a Santa could e`er give away.
The sack never empties of love, or of joys
`Cause inside it are prayers, and hope. Not just toys.
The more that I give, the fuller it seems,
Because giving is my way of fulfilling dreams.
"And do you know something? You've got a sack, too.
It's as magic as mine, and it's inside of you.
It never gets empty, it's full from the start.
It's the center of lights, and love. It's your heart.
And if on this Christmas you want to help me,
Don't be so concerned with the gifts `neath your tree.
Open that sack called your heart, and share
Your joy, your friendship, your wealth, your care."
The light in the small boy's eyes was glowing.
"Thanks for your secret. I've got to be going."
"Wait, little boy," Said Santa, "don't go.
Will you share? Will you help? Will you use what you know?"
And just for a moment the small boy stood still,
Touched his heart with his small hand and whispered, "I will."
=========================================================================
Date: Fri, 11 Dec 1998
07:21:56 -0800
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From: Thomas Troudt
<ttroudt@SPRYNET.COM>
Subject: Re: Samantha Guyette
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Hi Lisa,
We are the Troudt family from Greeley Colorado.
Our oldest child Derek,
4 yrs. was born with Aperts. We also have a 1 1\2 yr old , Darren.
I hope
that you find this site as helpful and supportive as we have.
Derek doesn't
have the eyelid problem that you described. His close all the
way. I'm
sure that you will recieve many helpful opions on this from other families.
I just wanted to welcome you and hope to hear alot about your kiddo
in the
future. Diana Troudt
=========================================================================
Date: Thu, 10 Dec 1998
09:41:47 -0500
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From: baconsmith <bluenose@TELUSPLANET.NET>
Subject: Re: Samantha Guyette
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Hi Lisa, my daughter was born with an extensive facial cleft and couldn't
close her left eye at all. Until her surgery, we used a product
called
Duratears. It is a gel like substance that we put in her eye
several times
a day to keep it lubricated. You csn probably find it at your pharmacy.
Then at night, we taped little windows of saran wrap over her eye to
protect
it . Hope this helps you
congratulations on Samantha. What a pretty name. Take good
care and let us
know how you get along.
Pat in Calgary
email to: bluenose@telusplanet.net
IM: onlypeach
www.widesmiles.org/gallery/peach/
One cannot kill time without injuring eternity. HD Thoreau
Civil Disobedience
=========================================================================
Date: Thu, 10 Dec 1998
10:28:28 -0500
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From: rhartley@DZIS.COM
Subject: Dry Eyes
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Dear Lisa and Richard,
Welcome. I bet you don't have any problems with dry eyes.
When we had our Andrew (Born 4/30/98) evaluated we had
the same concern as his eyes also did not close completely.
We were told that in some cases they put a stitch on the side
of the eyes to assist the lids in closing completely. Has anyone
else heard this.?
On a different topic. Our Andrew has his first bilateral finger op
done about 6 weeks ago. He has 4 fingers on both hands. Was
anyone else very disappointed with the results.??
Take care, You have friends here.
Regards
Rich & Karen in PA.
=========================================================================
Date: Thu, 10 Dec 1998
12:17:45 -0500
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From: Richard Thornquist
<rlthorn@EARTHLINK.NET>
Subject: Re: Samantha Guyette
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Welcome Lisa,
My name is Lynn and my son Andrew is 2 years old, also born with Apert.
I'm
sure you will get all your questions answered and then some.
You have found
a wonderful family and a wealth of experienced knowledge.
As far as the eyes go, Andrew was not able to close his eyes all the
way
when he was born either. I was given saline drops by my pediatrician
as
well to be put in his eyes twice a day (morning and night). Andrew
is also
his pediatrician's first Apert. I bet that is the same with most
of these
doctors, since Apert is so rare.
What have the doctors said as to the way their going to handle surgeries
and
when?
Please feel free to ask as many questions as you want.
Again, welcome to the listserv, and I'm really glad your here.
Lynn Thornquist
rlthorn@earthlink.net
=========================================================================
Date: Thu, 10 Dec 1998
17:34:31 -0500
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From: ROBIN L HILL
<CARMENRAE@PRODIGY.NET>
Subject: Re: Samantha Guyette
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Congratulations on the birth of your daughter and welcome to the list.
We
are Mike and Robin Hill in Newnan, Georgia. Our daughter, Carmen
Rae, was
born on January 18, 1998 with Aperts. We have not had any problems
with
her eyes; however, I am sure you will get many suggestions from the
other
members of the group. I know you will love it here; everyone
is very
supportive and helpful!!
Robin Hill
----------
> From: Lisa Guyette <LAM1126@AOL.COM>
> To: APERT@LISTSERV.AOL.COM
> Subject: Samantha Guyette
> Date: Thursday, December 10, 1998 2:21 AM
>
> My name is Lisa Guyette and my husband Richard and I had a daugher
on
November
> 11, 1998 named Samantha who has Apert Syndrome. We live in
Oxnard
California.
>
> We are currently having consults at Children's Hospital in Los Angeles
and
> then will go for a second oppinion to UCLA.
>
> While I'll have a lot of questions the one I'm concern with today
is her
eyes.
> She doesn't close them all the way. I read that this will cause
them to
dry
> out and bring vision problems. I asked her pedetrician today
and he said
that
> I might want to put saline drops at night. Samantha is his
first Apert
child.
> I read that these children should have special drops.
Is there a
special eye
> drop that many apert children use?
>
> Thanks for your help and I look forward to speaking and learning
from
you.
> Something that I will pass on to other newer parents.
>
> Lisa Guyette
>
> PS Also to any of my family and friends that took the time to subscribe
here
> to learn for us and themselves, thank you so much it means so much
to us.
=========================================================================
Date: Thu, 10 Dec 1998
18:28:41 EST
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From: BBarn60368@AOL.COM
Subject: Re: Samantha Guyette
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Lisa,
Congratulations! I'm sure you are shocked, scared, and probably
disappointed,
but all of that will pass and you will just love your little girl so
very
deeply. These kids are such a joy and such an inspiration.
You will learn so
much from her and from people, as well. Some of it will be good
and some bad,
but all of it so worth it.
Anyway I wanted to comment on the saline drop recommendation.
Isn't that
salt? And isn't it used in the nose to dry it up? Are you
sure he/she said
saline drops? My daughter, Shirley slept with her eyes half open
all the time
and we never used anything. But, I have also heard of Dr.s who
have sewn
these kids eyes closed. I think that may have been to keep the
eyes in the
sockets, though. The sockets are usually small, and in severe
cases, I have
heard of them being sewn shut.
Welcome to the group. It is such a wonderful one.
=========================================================================
Date: Thu, 10 Dec 1998
18:54:00 -0600
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From: Judy Amerman
<jamerman@UTI.COM>
Subject: Re: Dry Eyes
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Nick still sleeps with one eye partially open and has never caused any
problems.
As far as the four fingers that he has, sure there was a time we were
a
little disappointed but I am just so grateful that he has the four
that he
has. I guess one of the the things that has made
me feel that way is
going to Children's Memorial and seeing those crippled up children
that
will always be in a wheelchair and cannot walk or feed themselves.
I
really count my blessings for Nick and the things that he can do.
Judy
--------
> From: rhartley@DZIS.COM
> To: APERT@LISTSERV.AOL.COM
> Subject: Dry Eyes
> Date: Thursday, December 10, 1998 9:28 AM
>
> Dear Lisa and Richard,
> Welcome. I bet you don't have any problems with dry eyes.
> When we had our Andrew (Born 4/30/98) evaluated we had
> the same concern as his eyes also did not close completely.
> We were told that in some cases they put a stitch on the side
> of the eyes to assist the lids in closing completely. Has anyone
> else heard this.?
>
> On a different topic. Our Andrew has his first bilateral finger op
> done about 6 weeks ago. He has 4 fingers on both hands. Was
> anyone else very disappointed with the results.??
>
> Take care, You have friends here.
> Regards
> Rich & Karen in PA.
=========================================================================
Date: Thu, 10 Dec 1998
21:09:11 EST
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From: Lisa Guyette
<LAM1126@AOL.COM>
Subject: Re: Dry Eyes
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Thanks for answering. Our kids are pretty close in age.
No we don't have
any problem with dry eyes ourselves. How are you guys holding
up? Was the
fingers the first surgery? We are having her MRI of the
head next week and
then I guess things will move along after that. I'm sure
this listserv will
be helpful but also sad at times as reality hits. Look
forward to
communicating with you.
Lisa Guyette
Mother of Samantha one month
=========================================================================
Date: Thu, 10 Dec 1998
22:32:43 -0800
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From: Joseph Chan <jchan7@PACBELL.NET>
Subject: Re: Samantha Guyette
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Dear Lisa,
Welcome! Our daughter Roxanne (born
11-9-88) is 10 years old and we
also go to UCLA and Children's Hospital in Los Angeles. We have
5 kids and
live in La Mirada, CA.
Roxy's eyes did not close either. Since
her eyes naturally teared
quite often, we simply left them alone. When Roxy had her midface
(at 6
years old), the situation with her eyes were corrected. Have
you met Dr.
Kawamoto at UCLA yet?
Rose (and Joseph)
La Mirada, CA
=========================================================================
Date: Thu, 10 Dec 1998
23:01:35 -0800
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From: claudia salazar
<pcbaas@HOME.COM>
Organization: @Home Network
Subject: Welcome Samantha and family!
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Hi Lisa, Richard and Samantha,
We are the Salazars, Pye, Claudia, Ben, Andy and Allie Salazar from
San
Diego. My daughter 8 (soon to be nine, Dec. 22) has Pfeiffers
Syndrome
which is similiar to Aperts. She had severe eye proptosis when she
was
born and her eyes DID come out of the sockets several times. The
surgeons had to sew her eyelids together to protect her eyes when she
was 11 days old. We also used Lacrilube daily until she had her
midface
advancement summer before last. The lacrilube is to make sure the
corneas are not abraised. We have also used real tears.
It depends on
the severity of Samanthas eye proptosis as to her needs.
Allie has had 25+ surgeries to date, and is a remarkable trooper. She
is
in regular school and well adjusted! Allie's plastic surgeon
is from
Santa Monica, (Dr Henry Kawamoto) and Allie also sees a craniofacial
team in LA and San Diego. Its really a small world in the craniofacial
world. Lisa, try to learn as much as you can. Many hospitals
have
medical libraries that are open to the public. I know Kaiser
does.
We have only been on the list about 2mos and it is a good place to share
info. My computer crashed this week and I lost all my bookmarks and
email info. It has not been fun....Please let me know the website with
past emails and the photo page link and who to send the photos to.
pful
Think Ive finally figured out how my scanner works and now Ive lost
all
my email addresses and have no one to send them to....lol...such is
life.
I hope everyone is having a delightful holiday season and my prayers
and
thoughts are with you and your family Lisa. It is very scary
at first,
then you realize how blessed you are.
Warmest regards,
Claudia
=========================================================================
Date: Fri, 11 Dec 1998
07:39:26 EST
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From: Jenngram@AOL.COM
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I am not sure about eyes, but we use saline drops to keep Jordans nose
(and
ours as well...when we have a winter...) moist and to help clear out
secretions.
Jenn(Tampa/St. Pete)
=========================================================================
Date: Fri, 11 Dec 1998
07:56:18 -0600
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From: Ize <ize@MASTER.CEAT.OKSTATE.EDU>
Subject: Re: Samantha Guyette
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Welcome Lisa and congratulations on the birth of your little girl! We
are the Ize's from Stillwater, Oklahoma. We have twin boys, Felipe
and
Rafael. Felipe was born with Apert's Syndrome. He is now 3 years old.
We
have not had problems with his eyes, but I remember that I used saline
drops in his nose. Hope to hear more from you soon!!!
Good luck on your journey...
Claudia Ize.
=========================================================================
Date: Thu, 10 Dec 1998
15:11:50 -0500
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From: Don Sears <dsears@SCRS.STATE.SC.US>
Subject: Listserv Welcome message
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Content-Type: text/plain
Hi everyone -
I finally got around to writing a custom listserv welcome message.
All
new subscribers will get a copy of this automatically. I want
you all
to take a look at it and let me know if you have any suggestions for
changes. Thanks! Here goes:
Hi! Welcome to the Apert Syndrome Listserv. My name is Don
Sears, your
list owner and manager. My wife Cathie and I created this listserv
to
provide a way for everyone who has an interest in Apert Syndrome to
communicate with each other and share experiences. Our daughter,
Elizabeth ("Teeter") was born with Apert in 1992 and for several years
we had no contact with anyone else who had any direct knowledge about
it. What a relief it was when we finally made contact with our
first
families and began Teeter's Page (http://www.apert.org).
The listserv belongs to its subscribers. We've established just
a few
ground rules, because we are truly like a large family.
* No harassment of any member will
be tolerated. No member's
opinion is any more or less valued than any other's. Please report
any
abuse directly to me at CatNDon@apert.org.
* Please do not attach large files
such as pictures to listserv
mail. Any pictures you wish to share should be attached to an
email to
CatNDon@apert.org and I will then post them to the Clubhouse at
http://www.apert.org/clubhouse. You may then send out a message
which
lets subscribers know your pictures are there.
* When replying, please try to avoid
quoting the original message.
Quoting relevant parts is fine, just be aware that some mail programs
automatically quote the entire original message, and when everyone
who
subscribes has already gotten this message, on about the fourth reply
the message becomes very long and very redundant.
* Please do not send any "chain
letters" through the listserv. If
you are not sure whether something would fall into this category, send
it to me first and I'll let you know.
* These rules may change from time
to time, and any changes will
be posted to the listserv.
We hope you enjoy using this great tool, and find it as helpful as we
have.
Sincerely,
Don and Cathie Sears
=========================================================================
Date: Fri, 11 Dec 1998
10:55:18 EST
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From: Cristy Williams
<CARLEE0604@AOL.COM>
Subject: Re: Samantha Guyette
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
Hello Lisa,
Congradulations on your new baby girl. I am Cristy. My baby is
Carlee. She is
6 months old. We haven't had any problems with the eyes so I copuldn't
help
you there. Just wanted to Welcome you and Samantha. Look forward
to talking
with you.
Sincerely,
Cristy and Carlee
in Florida
=========================================================================
Date: Fri, 11 Dec 1998
10:58:55 -0500
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From: Don Sears <dsears@SCRS.STATE.SC.US>
Subject: Re: Welcome Samantha and family!
MIME-Version: 1.0
Content-Type: text/plain
The listserv archives are at http://www.apert.org/archive.htm
Send pictures to CatNDon@apert.org
The Clubhouse photos are at http://www.apert.org/clubhouse
-----Don
> -----Original Message-----
> From: claudia salazar [SMTP:pcbaas@HOME.COM]
> Sent: Friday, December 11, 1998 2:02 AM
> To: APERT@LISTSERV.AOL.COM
> Subject: Welcome Samantha and family!
>
> email info. It has not been fun....Please let me know the website
with
> past emails and the photo page link and who to send the photos to.
> pful
>
=========================================================================
Date: Fri, 11 Dec 1998
17:40:03 EST
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From: Shirley Tanner
<TANRANCH@AOL.COM>
Subject: Re: Samantha Guyette
Mime-Version: 1.0
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Rose,
What exactly did they do
with Roxy's eyes when they did her cranial to stop
them from tearing? Collin's eyes pour tears all the time & his
cranial surgery
is coming up in the spring. Thanks for your help.
Shirley Tanner
=========================================================================
Date: Fri, 11 Dec 1998
17:38:26 EST
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From: Shirley Tanner
<TANRANCH@AOL.COM>
Subject: Re: Open eyes
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Hi Lisa,
Congratulations on the birth of Samantha.
I have always liked that name.
Our son, Collin, is 6-1/2
yrs old w/Aperts and has always slept with his eyes
partially open. We were also given Lacrilube to put in/on his eye lids
while
sleeping to keep his eyes from being injured. We did this for a while
but have
not in years. So far there haven't been any complications. His vision
is good
& doesn't wear glasses (yet) anyway.
I have not been on this
listserv very long but have really enjoyed it. It is
a pot of gold!
I have a question for everyone
out there... does anyone know anything about
communication devices such as SAY-IT-ALL? Collin is pretty much non-verbal
so
we are checking into purchasing one for him. We are trying to get our
insurance to cover the expense. They said if he had CP that it would
be
covered but I guess since they don't know much about Apert is has to
go before
a Medical Review board. Any ideas from anyone on this?
Shirley Tanner
Hartford, AL
=========================================================================
Date: Sat, 12 Dec 1998
08:01:24 -0600
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From: "D. Jefferson"
<djeff@MIDWEST.NET>
Subject: Re: Seth's surgery update:
MIME-Version: 1.0
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Dear Friends,
Just a quick note to let you know that Seth had the distracters removed
and
forehead
revised on Thursday. Seth is swollen but in great spirits.
He is really
pleased to have
the distracters and tubes out (in hopes of going swimming next summer
with
Judy and Nick Amerman).
Things went well except he had a scary reaction to the combination of
the
anesthesia and morphine given for pain afterwards. He had seven
episodes
where he stopped breathing. He was finally transferred to ICU
and was
giving a drug
to counter act the effects of opiates. After that he was fine,
we, on the
other hand, were
quite shaken and spent the next 12 hours just watching him breath.
However, it is over,
we know what caused the problem and all is well. It is just another
thing
to remember to tell
anesthesiologist next time he has surgery.
Thank you all for your warm support and well wishes during the past
four
months. I am so
glad that I have people to communicate with that understand the many
emotions that
go along with cranial and hand surgeries; the high hopes, the
fears, the
disappointments and joys.
Warmly, Dori
Dori A. Jefferson
djeff@midwest.net
=========================================================================
Date: Sun, 13 Dec 1998
14:38:42 -0500
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From: Alice Lynch <goddess@CAPITAL.NET>
Subject: Re: Seth's surgery update:
MIME-Version: 1.0
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Dear Dori:
Great news about Seth. Please send a picture once Seth is not
swollen.
Jack and I are very interested in the type of surgery Dr. Marsh did
on Seth
and would love to see some first hand results. Colin is doing
fine. He's
nearing 10 and as parents we're counting the years until his mid-face.
We
hope to get to Colin's teens before we reach that stage, though anything
can happen and we'd like to be prepared.
Again, great news. Give Seth a big hug from us and tell him way to go.
Love, Alice in Lake George
----------
> From: D. Jefferson <djeff@MIDWEST.NET>
> To: APERT@LISTSERV.AOL.COM
> Subject: Re: Seth's surgery update:
> Date: Saturday, December 12, 1998 9:01 AM
>
> Dear Friends,
>
> Just a quick note to let you know that Seth had the distracters removed
and
> forehead
> revised on Thursday. Seth is swollen but in great spirits.
He is really
> pleased to have
> the distracters and tubes out (in hopes of going swimming next summer
with
> Judy and Nick Amerman).
>
> Things went well except he had a scary reaction to the combination
of the
> anesthesia and morphine given for pain afterwards. He had seven
episodes
> where he stopped breathing. He was finally transferred to ICU
and was
> giving a drug
> to counter act the effects of opiates. After that he was fine,
we, on
the
> other hand, were
> quite shaken and spent the next 12 hours just watching him breath.
> However, it is over,
> we know what caused the problem and all is well. It is just
another
thing
> to remember to tell
> anesthesiologist next time he has surgery.
>
> Thank you all for your warm support and well wishes during the past
four
> months. I am so
> glad that I have people to communicate with that understand the many
> emotions that
> go along with cranial and hand surgeries; the high hopes, the
fears, the
> disappointments and joys.
>
> Warmly, Dori
> Dori A. Jefferson
> djeff@midwest.net
=========================================================================
Date: Sat, 12 Dec 1998
18:11:22 -0500
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From: "Dudley R. Irvin"
<76121.202@COMPUSERVE.COM>
Subject: Tearing
MIME-Version: 1.0
Content-Transfer-Encoding: 7bit
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Hi! When my son Alex (8y) was a baby he had tears running down his face
all
the time, when he was not crying. At 7 months of age, he had a tear
duct
probing to open his tear ducts, which had not been working. Ever since,
things have been fine. Also when Alex is asleep his eyes are sometimes
half
open, but this has not hurt him in any way. Amy Irvin
=========================================================================
Date: Sat, 12 Dec 1998
15:27:21 -0800
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From: Joseph Chan <jchan7@PACBELL.NET>
Subject: Tearing
MIME-Version: 1.0
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Content-Transfer-Encoding: 7bit
> What exactly did they do
with Roxy's eyes when they did her cranial
to stop
>them from tearing?
Dear Shirley,
I am not sure of the technical aspects of
the mid-face advancement. I
don't think
Dr. Kawamoto (Los Angeles) worked specifically on her eyes. Perhaps
it was
the shift in general that helped. All I know is that Roxy did
gain several
positive outcomes as a result of the surgery. Besides the tearing
subsiding, she no longer snores as loud while sleeping and breathes
easier,
and her speech has improved tremendously (according to our friends).
Best wishes for next year.
Rose
La Mirada, CA
=========================================================================
Date: Sat, 12 Dec 1998
22:04:45 -0800
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From: claudia salazar
<pcbaas@HOME.COM>
Organization: @Home Network
Subject: Seth's Surgery
MIME-Version: 1.0
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Dori,
Glad to hear Seth is in good spirits, it is such a relief when tube
by
tube is taken out. Sorry you had such a scary experience with
the
breathing problem. I hope the rest of your recovery is good.
Have a
delightful holiday.
Allie had her super spy birthday party today....at AIA (Allie
Interpol
Agency) The 18 kids had a great time, cant say much for my yard and
house. What a blessing that she is able to have friends over
and
celebrate life.
With prayers to everyone recovering from surgery.
Warmest regards,
Claudia
=========================================================================
Date: Sun, 13 Dec 1998
09:44:50 -0800
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From: Robyn Johnston
<robyn@ORDATA.COM>
Subject: Re: Seth's surgery update:
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Dori, i am glad to hear that Seths Distraction was successful.
And that he
had his tubes removed too. Brenna also had a scarey episode with
morphine
after her cranial surgery. I didn't let my eyes off of her either
after
that!
Glad to hear that all is well,
Happy holidays and Take care, Robyn J
=========================================================================
Date: Sun, 13 Dec 1998
15:11:12 EST
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From: Lisa Guyette
<LAM1126@AOL.COM>
Subject: Hand Specialist
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Wed our then five week old daughter will meet at LA's Children hospital
for
hands consult. She has all four fingers ans thumb. Thumb
is detached. Pinky
is webbed at the middle. Other three are fused together.
All are formed
separate. Bones there, knuckles and nails. I was wondering
if anyone can
offer key questions to ask that they learned at their consults or wish
now
they had known and ask.
Samantha will also have her first MRI on head then too.
I'm so happy to find this board. My husband and I went to plastic
surgeron
and neurosurgeon when she was a week old, and we could only listen
to wat they
had to say. You feel like you have no control of what to do best
to help your
child.
You're all such an inspiration. Thanks
Lisa Guyette
Oxnard, CA
=========================================================================
Date: Sun, 13 Dec 1998
20:51:39 EST
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From: Frank & Annette
Contrino <contrino@BUFFNET.NET>
Subject: Re: Dry Eyes
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
>
>On a different topic. Our Andrew has his first bilateral finger op
>done about 6 weeks ago. He has 4 fingers on both hands. Was
>anyone else very disappointed with the results.??
>
Sure. We had hoped that Nicole would end up with four fingers
and a thumb
on each hand and she did not (3 fingers and thumb on both). It's
definitely
disappointing, but hey... life goes on. Things, as you know,
could be much
worse. Spending time in the waiting rooms during doctor visits
and
surgeries usually helps to put things in perspective. Might as
well get
something out of those long tortuous waits. It'll be a tough
road ahead for
our little. I just hope we can keep her heading down the right
path and
provide her the support and guidance she needs to make it. Only
time will tell.
Frank Contrino
=========================================================================
Date: Sun, 13 Dec 1998
23:31:12 EST
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From: NephiRose@AOL.COM
Subject: Mothers
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Hello all,
A mother of two children
with special needs e-mailed this to me this morning.
It made me smile and even a bit teary. I think this could also
apply to the
Dads out there :). Merry Christmas to everyone. Always
thinking of you all.
Belinda
Special Mothers Sought
Most women become mothers by accident, some by choice,
a few by social
pressures, and a couple by habit.
This year, nearly 100,000 women will become mothers
of handicapped
children. Did you ever wonder how mothers of handicapped children were
chosen?
Somehow I visualize God hovering over the earth selecting
his
instruments for propagation with great care and deliberation. As he
observes, he instructs his angels to make notes in a giant ledger.
"Armstrong, Beth, son. Patron Saint, Matthew"
"Forrest, Marjorie, daughter. Patron Saint, Cecelia"
"Rutledge, Carrie, Twins. Patron Saint...Give her
Gerard. He's used to
profanity"
Finally he passed a name to the Angel and smiles,
"Give her a
handicapped child."
The Angel is curious. "Why this one, God? She is so happy."
"Exactly," smiles God. "Could I give a handicapped
child to a mother
that does not know laughter? That would be cruel."
"But has she patience?" asks the Angel.
"I don't want her to have too much patience or she
will drown in a sea
of selfpity and despair. Once the shock wears off, she'll handle it."
"But, Lord, I don't think she even believes in you."
God just smiled. "No matter, I can fix that. This
one is perfect. She
has just enough selfishness."
The Angel gasps. "Selfishness? Is that a virtue?"
God nods. "If she can't separate herself from the
child occasionally,
she'll never survive. Yes, here is a woman whom I will bless with a
child
less than perfect. She doesn't realize it yet, but she is to be envied.
She
will never take for granted a 'spoken word'. She will never consider
a step
ordinary. When her shild says 'momma' for the first time, she will
be
present at a miracle and know it! When she describes a tree or a sunset
to
her blind child, she will see it as few people ever see my creations."
"I will permit her to see clearly the things I see...Ignorance,
cruelty, predjudice...and allow her to rise above them. She will never
be
alone. I
will be at her side every day of her life because she is doing my work
as
surely as she is here by my side."
"And what about her Patron Saint?" asks the Angel,
his pen poised in
mid-air.
God just smiles and says, "A mirror will suffice."
=========================================================================
Date: Mon, 14 Dec 1998
09:43:31 -0500
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From: baconsmith <bluenose@TELUSPLANET.NET>
Subject: Re: Seth's surgery update:
Mime-Version: 1.0
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Dear Dori, thanks for the update on Seth. The non breathing episodes
must
have been so frightening. I would be a basket case. I am
so glad all is
well now.
It's great that Seth is handling this with good spirits. Boy,
what we ask
of these kids and how they respond for us. I hope all of his
convalescence
will smooth from here out.
I didn't realize they had to do a forehead revision ... what a huge
surgery
he gone through and what a process for the past four months.
Tell him
Peach and I think he's a tough guy with much strength and we too hope
he is
back in the swim of things soon.
Have a wonderful holiday.
Best wishes
Pat and EvaJessie in Calgary
=========================================================================
Date: Mon, 14 Dec 1998
09:47:15 -0800
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From: claudia salazar
<pcbaas@HOME.COM>
Organization: @Home Network
Subject: Re: Hand Specialist
MIME-Version: 1.0
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Lisa Guyette wrote:
> I'm so happy to find this board. My husband and I went to plastic
surgeron
> and neurosurgeon when she was a week old, and we could only listen
to wat they
> had to say. You feel like you have no control of what to do
best to help your
> child.
Lisa,
I understand exactly how you feel. It is overwhelming at times.
I felt
the same way when Allie was born, all the different doctors offering
their opinion, it is confusing and scary. The most you can do
is learn
as much as you can and make your decisions. You DO have a voice
in her
care plan, thats why it is so important to learn as much as you can.
Many times you have to go with your heart and intuition. Ask
questions
about previous cases and outcomes, make sure you know the risks
involved. If at all possible when your daughter is in the hospital
do
not leave her alone. I say this because I work in a hospital.
The
nurses are usually fabulous, but they are not able to give your baby
the
care that you would as a mom. And there is that occasional nurse
that
you would not want taking care of your baby and you need to be there
so
you know that. Its not just a certain hospital, it is all...We
have
been in many different hospitals and in different cities. Same
everywhere. Spending quite a bit of Allies first year in the
hospital
with various problems, we have seen what happens when a parent isnt
there. Also because she had a trach, therefore no audible cry,
we were
afraid she would be crying and no one to respond.
Was Dr Kawamoto your plastic surgeon? If so, youre in good hands.
Good
luck on your visit this week and MRI. Take care.
Thinking of you.
Claudia
=========================================================================
Date: Mon, 14 Dec 1998
09:52:23 -00800
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From: Liz <LSAYLAN@AOL.COM>
Subject: A Friendship Tree - from Liz
Guess what!! You have just received an animated greeting card from Liz
You can pick up your personal greeting by connecting to the following
WWW Address
<A HREF="http://www2.bluemountain.com/cards/box7799h/guw5zhsikzdxyu.htm">http://www2.bluemountain.com/cards/box7799h/guw5zhsikzdxyu.htm</A>
(Your greeting card will be available for the next 60 days)
This service is FREE! :) HAVE a good day and have fun!
____________________________________________________________
Accessing your card indicates your agreement with our Website Rules
posted at the bottom of the following Web location: (You're welcome
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free card to someone at this location) http://www2.bluemountain.com
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Date: Mon, 14 Dec 1998
21:38:02 EST
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From: CatnDon@AOL.COM
Subject: Myrtle Beach Vacation
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Hi everyone, this is Cathie (Teeter's mom). I know I never write
to the list,
but I always read every letter that comes through. Judy Amerman
(Nick's mom)
keeps telling me to write, get involved, etc., but I just like lurking.
I'm
not much on writing, but I can sure talk your ear off on the phone
or face to
face. Well, I'm finally writing, because we (Amerman's and Sears')
are going
back to Myrtle Beach again this summer and we would love to have each
and
everyone of you to join us. We are going to be there from June
9th - 18th.
We will be staying at the Crown Reef Resort, which I think is the best
hotel
in Myrtle Beach. (I have been going to Myrtle Beach since 1976
and Don has
been going since 1960.) There is sooo much to see and do at the
beach. There
are amusment parks, water parks, shopping, shopping and more shopping,
dinner
theatres, miles of beach, fishing piers, and hundreds of wonderful
restaurants
from dressy to all you can eat seafood. Plus if you like golf,
Myrtle Beach
has some of the best courses on the east coast. Can't you tell
I LOVE Myrtle
Beach. The hotel has 20+ swimming pools, full kitchens, and wonderful
oceanfront views off the private balcony. The rates run $130-$155
per night
plus tax. There are times that Don, Teeter and I never move our
truck from
the parking lot all week. I cook in the room and sometimes go
to the
downstairs restaurant and get a $1.30 meal of 2 hotdogs, drink and
ice cream.
Teeter calls it her hotel. Please visit Crown Reef's website
at
www.crownreef.com to see more about it. Myrtle Beach also has
a web site at
www.myrtlebeachlive.com Myrtle Beach has an airport
within 2 miles of the
hotel. Please consider joining us this summer and starting our
own "family
reunion".
Much love to all and happy holidays,
Cathie
=========================================================================
Date: Mon, 14 Dec 1998
21:37:52 EST
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From: Shirley Tanner
<TANRANCH@AOL.COM>
Subject: Re: Seth's surgery update:
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Dear Dori,
Glad to hear Seth is on the road to
recovery. I am sure you guys are
exhausted from the stress of everything you've all been through. I
hope you
all can breath easier now and have a Happy Holiday! I am
looking forward to
seeing the results of Seth's surgeries. I am to send pictures
of Collin to Dr
Fearon (cranial surgeon) so he can give us an idea of what surgery/surgeries
we should plan for next. I believe he does the distraction device now
also. I
am trying to put together all the questions I can think of for him
to answer
before we schedule the next surgery.
Merry Christmas to everyone!
From the Tanners-Larry, Shirley & Collin