Dear Marjorie,
We are always Thinking of
you and wishing BJ a quick return to the very
best of health.
The Ize Family.
=========================================================================
Date: Sun, 15 Feb 1998
09:59:13 -0800
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From: Robin MacDonald
<macdonal@GOLDEN.NET>
Subject: recognition of differences
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I am wondering, on average, at what age children have begun to notice
the physical differences that they have? Our daughter if 5 and a half
and has really taken notice of the differences in fingers and toes.
=========================================================================
Date: Sun, 15 Feb 1998
10:20:31 -0800
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From: Robyn Johnston
<robyn@ORDATA.COM>
Subject: gagging question
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Hi everyone,
I have got a question that I hope maybe someone has some insight into...
Recently - between 2 and 3 weeks ago, Brenna has started gagging on
everything. We have had to stop using bibs because she just gaggs
uncontrollably until she has herself in tears. It even happens
when we
change her shirts. When we pull anything over her head and neck,
the
sensation of something touching her neck causes her to choke.
Also when
she gets upset, and cries - not very often - usually only when she
gets
hurt, she starts to gagg in the worst way. It starts immediately
as she
starts to cry. The gagging is a little more invoved when she
is crying.
When we went to the ENT last week, he said that her tonsils are starting
to
grow, and that we will have to have her tonsils and adenoids removed
in the
near future. He wants to wait though until they absolutely have
to come
out. I am wondering if there is a conection??? I asked
him about it, but
he had never had this association before.
Anyways, I am baffled!!! ;-/ Brenna woke up real early this
morning (from
an apnea spell, or tummy ache or bad dream???) crying real hard and
gagging
for almost 20 minutes until I got her to settle down again. She
never
actually throws up anything, but I am beginning to get concerned.
She does
have some sleep apnea that seems to be getting worst lately.
I probably
wouldn't be as concerned if this gagging were "normal" behavior for
her.
But, it just started up a few weeks ago???
Has anyone had, or heard of other children who do this? Any insight
or
opinions would be really appreciated!!!
Hope you all had a nice Valentines day- hopefully with lots of Chocolate!!!!
Hugs, Robyn Jonhston
=========================================================================
Date: Sun, 15 Feb 1998
11:39:41 -0800
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From: Scott Pengelly
<scottp@EUGENE.COM>
Subject: Good wishes for the Harmons:
Scott
Comments: To: AOL User <MHTeach102@AOL.COM>
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Good morning, all:
Marjorie, David, BJ, Joshual,Jacob and Katie:
You remain in my prayers and in my heart. Please rest
when you can.
All the best,
Love, Scott
=========================================================================
Date: Sun, 15 Feb 1998
16:32:34 EST
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From: Lynn Thornquist
<Thornq@AOL.COM>
Subject: Re: gagging question
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Robyn,
My son Andrew has just started the same thing whenever he eats or drinks
anything. He will even gag when he is drinking from his bottle.
It isn't
just juice liquid, but milk as well. Its not a choking thing,
its an
exaggerated cough or gag. Our hand and foot surgeon, said that
sleep apnea is
very common in Apert. Also, our craniofacial surgeon said that
it is very
typical that Apert children need to have their tonsils and adenoids
removed.
He said that it is usually done when the child is around three years
old. Our
ENT has told us that he will also wait until necessary to do it, but
I feel
that it is time. I will be calling his ENT on Monday to discuss
this and make
an app.
Now I have a question. I was reading Dr. Upton's book and it says
that Reflux
is very rare in Apert. Is this true? Does anyone out there
experience Reflux
with their children or has an older Apert adult out there still experience
this? I am real curious, because the book says that the spitting
up and
coughing are due to the inflamed tonsils and adenoids. Does anyone
out there
have any information to share with me?
I hope that BJ and Jordon are doing well and I am looking forward to
their
updates. Both are in our prayers.
Love to all,
Lynn
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Date: Sun, 15 Feb 1998
17:21:52 EST
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From: Janine Krebs
<Yonstein@AOL.COM>
Subject: Best Wishes
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Dear Harmon family:
I just wanted to wish you all well and let you know you are in our prayers.
We're hoping that BJ improves daily and is not in too much pain.
Thanks for the update.
Jenn, Joe and Jordan:
Hope Jordan is recovering nicely from his surgery, and Mom and Dad, too.
Anyone else having surgery best wishes to you also.
Janine Krebs
=========================================================================
Date: Sun, 15 Feb 1998
20:46:48 -0500
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From: foster <foster@ICONTECH.COM>
Subject: gagging question
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Lynn,
I have some knowledge of reflux. When Billy was two months old and had
his
bowel repaired the doctors put in a g tube for feeding and insisted
that
they do a Nissen fundoplication, which is basically rapping them stomache
around the esophagus to prevent reflux. We did not want them to do
this but
were told that reflux is sometimes a problem with aperts. They felt
that
this whould help him from having a problem gaining weight. WE agreed
and let
them do it. Because our four year old who was three months premature
had
relux for the first 10 month of her life and it was very un plesant
and she
did gain weight but not as fast as she could have. We felt this was
a good
move.It has proven to be a good move although he can eat all of his
food by
mouth and not have a problem but when given any liquid by his tube
once he
takes 3 1/2 ozs. he will start to gag. So we have to wait and give
him
atleast 45 minutes be fore he can tolerate any more. When he starts
to gag
we hold him upright and rub his back and that seems to help. The doctor
do
not seemed concerned and is weight gain has been pretty good so far.
There are medicines that the doctor can give for reflux and sometimes
that
helps but ussually the child will out grow relux in most cases by the
time
they reach 1 year old. Holding them upright ussually work best if it
is just
relux. However if the problem is the tonsils I dont think that
is reflux.
We are sending our prayers to BJ and his wonderful family and pray he
will
be stronger everyday.
Also thinking of Blake and Jordon and hopping their recovery is going
well.
Billy is off to get his sitches out tomorrow. I have to say he is a
much
happier boy these days and doing better everyday.
Karen
=========================================================================
Date: Sun, 15 Feb 1998
19:50:24 -0800
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From: Laurie Ann Bailey
<jkb@ELPASO.NET>
Subject: Re: recognition of differences
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My name is Laurie Bailey. My son, Jacob, is 21 months old and is
currently undergoing his finger separations. He has already taken an
interest in how his hands are different from mommy's and daddy's.
Laurie Bailey
jkb@elpaso.net
=========================================================================
Date: Sun, 15 Feb 1998
21:23:16 EST
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From: "<George Siebert>"
<GSieb91515@AOL.COM>
Subject: Re: Response to Brenda
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Sonya,
So glad to hear how well everything went for you guys. I hope
we have as good
of luck. We did find out that the reason George's blood didn't
work was
because his was CVS positive. Which means he had the antibodies
for
Chickenpox, etc. Because Jonathan was so young with his first
cranial surgery
the order was for CVS negative. However, they didn't do any lab
work before
surgery which I consistently asked about since I've had a number of
surgeries
myself and have always had preop stuff. They couldn't get a vein
the morning
of surgery on Jonathan so they decided to wait until he was under to
do the
blood match. We had no idea there would be a problem with George's
blood not
working. It was never mentioned as a potential possibility.
Anyway, I don't know anything about the neuro surgeon that Dr. Salyer
works
with. Have you heard anything about him since you selected the
other NS. We
love our NS here in Houston and hate the thought of using someone else.
He
actually left his practice here for a year to go study with the guys
in Dallas
awhile back. I feel I should call him and let him know what we
are going to
do and see what his reaction is to this other neurosugeon.
Was Blake's surgery at Columbia? We had a bad experience at the
Columbia
hospital here when Jonathan was born. I hope they're not all
run the same
way. I think Columbia owns just about all the hospitals now.
Did you guys
stay in a hotel or camp out at the hospital? This may sound silly,
but was
there a shower in Blake's room when he was moved from ICU? The
last time
Jonathan was at Texas Children's I stayed with him the entire time
and it was
a battle trying to find an unoccupied shower in the hospital.
I think they
had a total of 3. It sounds like everything was positive for
you all. I'm so
glad. The surgery is scheduled for March 24th but we will make
a trip up
there before with new CT scans and a general visit. This will
have to be in
between his hand surgery on 2/23 and the healing. Also
I think George and a
friend are going to fly to Dallas and donate within the 2 week timeframe
before surgery. It's going to be a hectic next few weeks.
Maybe we will be
in Dallas at the same time. Let me know when Blake's followup
appt. is.
Thanks for the info.
Continued best wishes for Blake's full recovery,
Brenda
Houston
=========================================================================
Date: Sun, 15 Feb 1998
21:08:01 -0500
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From: Elizabeth de
Silva <lizsilva@SRV1.TELCONET.NET>
Subject: Re: An Update
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Dear Marjorie: you, BJ and your family have proven to have a great
strength and lots of patience! You are our inspiration! Keep up!! (I
know it is easier to say than to do). You are in our prays.
To all the list friends: Just to share a little good new,
the American
Consulate gave us the Visa... so hopefully we will be travelling to
PA
by this weekend or the next.
I will let you know the exact day of our travelling,
Best regards,
Elizabeth
=========================================================================
Date: Mon, 16 Feb 1998
08:24:54 -0800
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From: Scott Pengelly
<scottp@EUGENE.COM>
Subject: Good luck, Elizabeth: Scott
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Good morning all:
Elizabeth de Silva, you and
your family are in
my thoughts and prayers as you prepare for your journey.
All the best,
love, Scott
=========================================================================
Date: Mon, 16 Feb 1998
15:21:05 -0500
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From: Jim and Kelly
Younkin <JimandKelly@YOUNKIN.COM>
Subject: Trip to PA
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Elizabeth, Best wishes for your trip here! I'm sure you
have a lot to do
right now to get ready! How long do you plan to be here?
As I said
before, we only live a very short distance from where you'll be.
Where
exactly will you be staying? Let us know if you know the name
of the place
or have a phone # so that we can reach you. Our # is (717)524-0865
if
you'd like to call us when you get a chance. We'd love to be
able to meet
you! Take care! Kelly
=========================================================================
Date: Mon, 16 Feb 1998
15:47:03 EST
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From: Gaylann Hicks
<Gaylann1@AOL.COM>
Subject: Response to Brenda
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Hi Brenda, Hope your day is going well. Sonya has all three
boys home today
and working on a painting order. Glad I'm a grandmother!
I read your email to her. There are four neurosurgeon at the
clinic and not
sure which one works with Dr. Salyer. Blake was down there for
two days of
preop: specialists, sleep study, blood work up, MRI, etc.
Sonya recommends
you call Angie Buckmeyer, clinic coordinator, @972-566-6760 or 1-800-227-2424.
(The 800 number is hard to reach.) Angie worked on the floor
for several
years and has good experience.
Sonya and family stayed at the Ronald McDonald House 214-631-7354.
They found
this very satisfactory. When we were there we stayed at the AmeriSuites
since
we had so many people there. There is a tub/shower available
in the room and
another shower on the floor. Don't think you will have a problem.
We were as
pleased with Medical City Dallas as any other hospital, I guess.
Personally
I'm not crazy about any of them. We really can't complain.
Have you met with a team? Blake's follow-up is in April.
If you would like
Sonya to call you, let us know your phone number and she will be glad
to do
so.
Good Luck
Gaylann
=========================================================================
Date: Mon, 16 Feb 1998
15:50:24 EST
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From: Gaylann Hicks
<Gaylann1@AOL.COM>
Subject: To Resa and Mark
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Dear Resa and Mark,
Hope you have been reading the messages back and forth from Sonya and
Brenda.
There is info about Dallas that you will probably be interested.
Let us know
if we can be of further help.
Take Care,
Gaylann
=========================================================================
Date: Mon, 16 Feb 1998
05:28:22 -0500
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From: Elizabeth de
Silva <lizsilva@SRV1.TELCONET.NET>
Subject: Re: Trip to PA
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Dear Kelly:
> Elizabeth, Best wishes for your trip here!
Thank you! I do not know yet when our trip is going to be or where
are
we going to stay. I will have to phone tomorrow Dr. Perlmutter
in order
to let him know that we are all set, so he can let us know when to
go
and where in PA.
We will be so happy to meet you and have some friendship support over
there. If I know in advance phone numbers I will let you know,
if I do
not get them in advance I will call you from there. Thank you
again for
your support.
Is it still very cold there?
Warm regards,
Elizabeth
=========================================================================
Date: Mon, 16 Feb 1998
18:45:01 +0000
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From: "J. G. Lindamood"
<chanan8@JUNO.COM>
Hello!
I have been reading about parents donating blood prior to your children's
surgeries. I donate blood on a regular basis as my "Good Samaritan"
gesture. When I went to donate today, I asked the nurse if I could
donate
on behalf of one of you. She told me that if your local blood
center
charges for the blood you might receive, it would benefit you for me
to
do so. You would not be charged for that pint. The blood
center here
would send a credit voucher to your local center. So, what I
am getting
at is if your child is scheduled to have surgery and you know that
your
local blood center charges for the pints of blood, NOT the services
the
hospital charges for to receive the blood, I cannot alleviate those
bills-sorry! Let me know and the next time I go, in April,
I will let
them know it's for you and ask them to send a credit voucher.
Joanne in Ohio
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Date: Mon, 16 Feb 1998
19:15:59 +0000
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From: "J. G. Lindamood"
<chanan8@JUNO.COM>
Subject: Safe Trip!
Elizabeth!
I had been wondering about you and your daughter! I hope your
trip to
the states is a safe one and that your daughter's surgery goes well.
You
will be in my prayers. I don't know what the weather is like
in
Pennsylvania, but it has been unseasonably warm this winter.
30-40
degrees.
The same goes to BJ, Jordan, Blake and Billy. You are all constantly
prayed for!
The job search saga continues. God is picking this time to teach
me many
things (or perhaps I am picking this time to learn many things from
Him?)
I am at peace.
Warm wishes to all
Joanne, in Ohio
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Date: Mon, 16 Feb 1998
23:14:43 GMT
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From: John Brumfitt
<john@BRUMFITT.DEMON.CO.UK>
Subject: New Subscribers,England
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First of all, we would like to thank Cath and Don Sears for all their
efforts re: Teeters Page and everything they have done to inform
Aperts' families that they are not alone and support is at hand.
As
new members to the Listserve, we would like to introduce ourselves
-
Angela and John Brumfitt from Rainhill near Liverpool, England.
We
have four children, Anna 18, John 11, James 9 and Helen 8.
James has Aperts syndrome. We have been following some of the
most
recent news from the members, with great interest, espesially that
of
B J Harmon, our thoughts and prayers go out to them all at this very
worrying time, ( may God bless them). We have followed the amount
and
types of surgery done in America, it seems to differ somewhat from
our
English system. James has had only one major surgery to the skull
and
the debate is on as to the best time to do something for his mid-face.
Our surgeons like to wait until children are 16, so the mid-face op.
possibly only needs to be done once and yet some of us as parents feel
the children would be better served cosmetically if a mid-face
correction was performed prior to the puberty years. Thus possibly
easing stresses from teasing and staring from other people.
James has had numerous amounts of surgery done to his hands and it
is
still ongoing. His hands were very severe, he has three fingers
and a
thumb on each hand.
We would like to thank Joanne in Ohio, for her lovely personal
thoughts and views of her life, which we would like to print in our
local newsletter for the Craniofacial Support Group, of which
I ,
Angela am on the Executive Committee, if Joanne consents.
We feel this is long enough for our opening letter, however I would
like to say that coincidentally, my maiden name is Harmon and my mum's
christian name was Marjorie .
Best Wishes to all - Angela, John and family.
=========================================================================
Date: Mon, 16 Feb 1998
19:42:24 EST
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From: AOL User <MHTeach102@AOL.COM>
Subject: An Update
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Wanted to drop a short note to let everyone know how we are doing. BJ's
condition is the same as last report. The dialysis they are using to
clean his
blood is doing about the same. He has a recurrent fever that the doctors
are
trying to stay on top of. They have done a good job of that. The doctors
have
changed the G-Tube and gone to more frequent but smaller feedings.
We are
hoping to eliminate some of the nausea and vomiting this way. BJ seems
to be
in a considerable amount of pain and the pain meds are not alway effective
in
controling it.
About the only good news is that BJ has been consious for several hours
at a
time. The doctors are wanting us to meet with the hospice team in the
morning
before we make anymore long term decisions.
JOANNE, as far as the blood goes for BJ our blood bank does not charge
for
Blood, This is a great thing as much blood as BJ has needed over the
past six
months. The fellow fire fighters and EMT's fDavid's station have been
more
than generous to donate bllod as often as possible. David and I have
also
given blood 3 times. I would like to encourage those that can to go
ahead and
give blood. I know that our blood bank has run very low on several
occasions.
Enough preaching from me. I again want to thank everyone for all they
have
done for our family. I will always pray for God to bless each of you.
Marjorie Harmon
=========================================================================
Date: Mon, 16 Feb 1998
21:02:52 -0400
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From: Kerri Hedinger
<khedinger@NS.GEMLINK.COM>
Subject: Re: New Subscribers,England
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Welcome to the Brumfitt Family!
I have three children, Tyler 9, Erin 8, and Devin 10 months. Devin
has
Aperts. I am sure that you are more experienced than I re: Aperts
but I
have found that just being connected to the ListServe is quite a relief.
To
know that their are more people out there who can answer your questions
(of
which we have many) from their experiences is a blessing. Good
Luck with
your upcoming hand surgeries and God Bless.
Kerri Hedinger
-----Original Message-----
From: John Brumfitt <john@BRUMFITT.DEMON.CO.UK>
To: APERT@LISTSERV.AOL.COM <APERT@LISTSERV.AOL.COM>
Date: Monday, February 16, 1998 3:31 PM
Subject: New Subscribers,England
>First of all, we would like to thank Cath and Don Sears for all their
>efforts re: Teeters Page and everything they have done to inform
>Aperts' families that they are not alone and support is at hand.
As
>new members to the Listserve, we would like to introduce ourselves
-
>Angela and John Brumfitt from Rainhill near Liverpool, England.
We
>have four children, Anna 18, John 11, James 9 and Helen 8.
>James has Aperts syndrome. We have been following some of the
most
>recent news from the members, with great interest, espesially that
of
>B J Harmon, our thoughts and prayers go out to them all at this very
>worrying time, ( may God bless them). We have followed the amount
and
>types of surgery done in America, it seems to differ somewhat from
our
>English system. James has had only one major surgery to the
skull and
>the debate is on as to the best time to do something for his mid-face.
>Our surgeons like to wait until children are 16, so the mid-face op.
>possibly only needs to be done once and yet some of us as parents
feel
>the children would be better served cosmetically if a mid-face
>correction was performed prior to the puberty years. Thus possibly
>easing stresses from teasing and staring from other people.
>James has had numerous amounts of surgery done to his hands and it
is
>still ongoing. His hands were very severe, he has three fingers
and a
>thumb on each hand.
>We would like to thank Joanne in Ohio, for her lovely personal
>thoughts and views of her life, which we would like to print in our
>local newsletter for the Craniofacial Support Group, of which
I ,
>Angela am on the Executive Committee, if Joanne consents.
>We feel this is long enough for our opening letter, however I would
>like to say that coincidentally, my maiden name is Harmon and my mum's
>christian name was Marjorie .
>Best Wishes to all - Angela, John and family.
>
=========================================================================
Date: Mon, 16 Feb 1998
21:23:47 EST
Reply-To: Information exchange and Internet
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and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
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From: Lynn Thornquist
<Thornq@AOL.COM>
Subject: Painful Teeth
Mime-Version: 1.0
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Hello,
It's me again with another question. I started brushing Andrew's
teeth many
months ago, but just recently (past week or two) Andrew has started
to cry
everytime I go to brush his teeth. I have read somewhere that
Apert teeth are
so jam packed in their mouths sometimes, that is can be painful to
brush their
teeth. Andrew's teeth have been coming in straight so far with
no signs of
lack of space. Has anyone else had this problem, or could it
just be that
Andrew is 18 months old and has quite a temper?
Marjorie,
I'm glad to hear that BJ is doing a little better than before.
He is a true
fighter and an inspiration to all Apert out there. We will keep
you in our
prayers and sending lots of love your way. Keep your chin up!
Lynn Thornquist
=========================================================================
Date: Mon, 16 Feb 1998
20:59:34 -0800
Reply-To: Information exchange and Internet
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From: Laurie Ann Bailey
<jkb@ELPASO.NET>
Subject: Re: An Update
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
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This message is from Laurie Bailey. I have a 21 month old son with
Apert's. His name is Jacob. I have been keeping up with your story
for
some time now. I want to wish you all well and to remind you: any little
improvement is a huge step toward BJ getting well. I know you probably
already know that, but sometimes it's nice when others realize it too.
Laurie Bailey
El Paso, Illinois
jkb@elpaso.net
1-309-527-4496
=========================================================================
Date: Mon, 16 Feb 1998
22:39:49 +0000
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From: "J. G. Lindamood"
<chanan8@JUNO.COM>
Subject: Hello England!
Angela, John and family,
First of all, Welcome to the Family! I hope you can find all of the
love,
acceptance and understanding I have found within these messages.
I hope
you are prepared to be blown away with all of the energy the people
on
this list will give you! It is astronomical!
YES! Please! If my words can be echoed in other forms, and
help someone
else, Please do so. I only ask that my name is attached and if
possible,
if I could receive a copy of the newsletter my information is printed
in?
I can send my personal snail mail to you. Thank you!
I want to send my thoughts to James. It is my hope that he knows
he is
not alone and that deep within himself is everything he needs to find
the
stamina to ignore the stares and teasing. I only wish I knew
this when I
was his age.
MARJORIE: I am glad to hear David's colleagues are helping you
out! You
are all in my prayers, especailly tomorrow morning. Hope all
goes well.
Joanne, in Ohio
_____________________________________________________________________
You don't need to buy Internet access to use free Internet e-mail.
Get completely free e-mail from Juno at http://www.juno.com
Or call Juno at (800) 654-JUNO [654-5866]
=========================================================================
Date: Tue, 17 Feb 1998
06:33:05 -0500
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From: Mark Smith <dsprado@PENN.COM>
Subject: just a note
MIME-Version: 1.0
Content-Type: multipart/alternative;
boundary="----=_NextPart_000_0075_01BD3B6D.E75F52E0"
This is a multi-part message in MIME format.
------=_NextPart_000_0075_01BD3B6D.E75F52E0
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charset="iso-8859-1"
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Good Morning to all,
Just to let you all know that this will be a hectic
week for me =
(Mark). Michele and Kayla are in Pittsburgh all week for evaluations
=
and testing. Which, since I cant be there this time, makes me
a single =
dad again this week. No surgeries, just testing. Since
I used all of =
my vacation from work last year when Kayla had surgery I have to be
at =
work. My employer is allowing me to work around having
to be here for =
Megan. I usually start about 2-3 am. But this week it is
more like =
8-8:30. So I am not getting home till late, like last night was
9 pm.
So I still have one here at home to try and take
care of. I am =
amazed at all the stuff Michele does that I don't do around here.
I =
dont know where she finds all the time. So I am doing my best
to stay =
on track here. I apologize in advance if I dont mention everyone.
Elizabeth, the weather here this week is scheduled
for rain most of =
the time, off and on for the entire week. I hope that your trip
here is =
educational and profitable, please let us know when you will be here
and =
if possible a number where you can be reached at. Michele would
like to =
call you, and possibly meet you when she is down there.
The Harmons, keep your chin's up. Long
road with many turns as you =
weel know. Our prayers are with you.
Angela, John, Anna, John, James, and Helen,
welcome to the list. =
Spent a lot of time in Europe in the service, 9 1/2 years, but never
got =
over to England. Wish I would have traveled more. Oh well,
to late now =
I guess, again welcome to our Family.
Lynn, we have never had any problems with Kayla
brushing her teeth. =
She enjoyes it and loves to brush when her big sister is also.
Best of =
Luck.
Well my friends, it is time to get ready for work
again. I hope =
that I have not missed anyone in my ramblings. I know it is with
great =
jpride that we all talk about our little ones. May you all have
a great =
day and the sun be shining in your part of the world
Sincerely, Mark
------=_NextPart_000_0075_01BD3B6D.E75F52E0
Content-Type: text/html;
charset="iso-8859-1"
Content-Transfer-Encoding: quoted-printable
<!DOCTYPE HTML PUBLIC "-//W3C//DTD W3 HTML//EN">
<HTML>
<HEAD>
<META content=3Dtext/html;charset=3Diso-8859-1 =
http-equiv=3DContent-Type>
<META content=3D'"MSHTML 4.72.2106.6"' name=3DGENERATOR>
</HEAD>
<BODY bgColor=3D#ffffff>
<DIV><FONT color=3D#000000>Good Morning to all,</FONT></DIV>
<DIV><FONT color=3D#000000> Just
to let you all know =
that this=20
will be a hectic week for me (Mark). Michele and Kayla are
in =
Pittsburgh=20
all week for evaluations and testing. Which, since I cant
be there =
this=20
time, makes me a single dad again this week. No surgeries,
just=20
testing. Since I used all of my vacation from work last year
when =
Kayla=20
had surgery I have to be at work. My employer is allowing
me to =
work =20
around having to be here for Megan. I usually start about
2-3 =
am. =20
But this week it is more like 8-8:30. So I am not getting
home =
till late,=20
like last night was 9 pm.</FONT></DIV>
<DIV><FONT color=3D#000000> So
I still have one here =
at home to=20
try and take care of. I am amazed at all the stuff Michele
does =
that I=20
don't do around here. I dont know where she finds all the
=
time. So I=20
am doing my best to stay on track here. I apologize in advance
if =
I dont=20
mention everyone.</FONT></DIV>
<DIV><FONT color=3D#000000> Elizabeth,
the weather =
here this=20
week is scheduled for rain most of the time, off and on for the entire=20
week. I hope that your trip here is educational and profitable,
=
please let=20
us know when you will be here and if possible a number where you can
be =
reached=20
at. Michele would like to call you, and possibly meet you
when she =
is down=20
there.</FONT></DIV>
<DIV><FONT color=3D#000000> The
Harmons, keep =
your chin's=20
up. Long road with many turns as you weel know.
Our prayers =
are with=20
you.</FONT></DIV>
<DIV><FONT color=3D#000000> Angela,
John, Anna, John, =
James, and=20
Helen, welcome to the list. Spent a lot of time
in Europe in =
the=20
service, 9 1/2 years, but never got over to England. Wish
I would =
have=20
traveled more. Oh well, to late now I guess, again
welcome =
to our=20
Family.</FONT></DIV>
<DIV><FONT color=3D#000000> Lynn,
we have never had =
any problems=20
with Kayla brushing her teeth. She enjoyes it and loves to
brush =
when her=20
big sister is also. Best of Luck.</FONT></DIV>
<DIV><FONT color=3D#000000> Well
my friends, it is =
time to get=20
ready for work again. I hope that I have not missed anyone
in my=20
ramblings. I know it is with great jpride that we all talk
about =
our=20
little ones. May you all have a great day and the sun be
shining =
in your=20
part of the world</FONT></DIV>
<DIV><FONT color=3D#000000> Sincerely, =20
Mark</FONT></DIV></BODY></HTML>
------=_NextPart_000_0075_01BD3B6D.E75F52E0--
=========================================================================
Date: Mon, 16 Feb 1998
23:49:42 -0800
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From: Robyn Johnston
<robyn@ORDATA.COM>
Subject: Re: Painful Teeth
Mime-Version: 1.0
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Hi Lynn,
Brenna has always had a tough time with Brushing her teeth also.
It has
been a struggle for my husband and I to say the least. It is
one area we
try not to slack on though because we have been told by so many of
her Dr's
that good hygeine in the teeth is important. On the average,
these kiddo's
are going to have lots of other dental problems to worry about.
There are
nights where she is obviously in pain from teething. Her teeth,
which are
very crowded, have come in very sporadically and sometimes several
at a
time. We try to be gentler during those times. The top
teeth seem to be
more sensitive than the bottom ones. Basically we all brush our
teeth
together and try to have fun. We sing songs and goof off together
with the
toothbrushes and it seems to work. We also give her 2 toothbrushes
so she
can handle one while we actually brush. We have found one that
has softer
bristles, a long handle and a small head which works well. It
is made by
OralB and it has Elmo on it. I believe we got it at Toys R Us.
Even
though it is not the funnest thing in the world, Brenna doesn't seem
to
mind to much. It has become part of her nightly ritual.
Does Andrew have
a favorite toy or stuffed animal that could have it's teeth brushed
at the
same time?
Good luck, and don't give up! It has taken us many months and
lots of
persistance to get her in this routine.
Hugs, Robyn & the Plum
At 09:23 PM 2/16/98 EST, you wrote:
>Hello,
>
>It's me again with another question. I started brushing Andrew's
teeth many
>months ago, but just recently (past week or two) Andrew has started
to cry
>everytime I go to brush his teeth. I have read somewhere that
Apert teeth
are
>so jam packed in their mouths sometimes, that is can be painful to
brush
their
>teeth. Andrew's teeth have been coming in straight so far with
no signs of
>lack of space. Has anyone else had this problem, or could it
just be that
>Andrew is 18 months old and has quite a temper?
>
>
>Marjorie,
>
>I'm glad to hear that BJ is doing a little better than before.
He is a true
>fighter and an inspiration to all Apert out there. We will keep
you in our
>prayers and sending lots of love your way. Keep your chin up!
>
>Lynn Thornquist
>
=========================================================================
Date: Tue, 17 Feb 1998
09:09:06 EST
Reply-To: Information exchange and Internet
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From: Jennifer Graham
<Jenngram@AOL.COM>
Subject: Re: An Update
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Hello to everyone..no didn't get kidnapped in cyber space..although
I wish I
had at different points this past week..my abducters at least would
have let
me sleep!!!!!!
Well, Jordan is finally home..YEAH!!! Last night was our first night
back..I
really had to harrass our overprotective doctors to let us go. It was
at the
point where I think they were thinking about restraining orders against
me.
bUt they agreed if the labs were good we could go..and they were, so
we did!!
He has done wonderfully. Our biggest problem were his skewed labs. For
no
reason 2 days post op his PT and PTT (these have to do w/ bleeding
& clotting
time) skyrocketed, then returned to normal?????? then his White count
jumped,
w/ no real fever..then went back to normal????? Some odd events to
keep in
mind for his future surgeries. They extubated him on his first day
post-op,
and I was paronoid he would decide he was to lazy to breath..but he
didn't and
what a happy mom I was to see his sats at 100% all the time!!! That
will make
me sleep better a night, and get me off Joes back about Jordan not
"breathing
right"
He went to the floor on his 3rd day, monitor free, and has been doing
well. He
threw up a few times, which concerned us b/c it was after his 2nd day..and
it
was projectile big-time w/ everything he had eaten his enire
life going all
over me..hey..I neded a shower anyway...luckily the hospital always
has
clothing on hand, so I was given a complimentary pair of scrubs. Then
other
parents kept asking me where stuff was..like I worked there!! Anyway,
I think
his vomiting was a result of his tummy being tiny and Jordan eating
too much
too fast..and the last episode from a coughing fit..he caught a URI
there..LOVELY!!!
He looks ok..a little like ET..his temporal egion on the right side
is still
puffy, b/c he lays on that side so I think the swelling pooled a bit..his
eyes
have been open since day 2, but really opened day 3..to never shut
again might
I add. No, really last night was a good night..he went to sleep around
8 and
woke at 5..ate played a bit then slept for another 21/2 hrs..So I can't
complain b/c I passed out cold the moment his head hit the bed. He
got ZERO
sleep in the hospital..too much activity going on..so he was tired
as well.
His disposition is ok..today should be better b/c he had some rest.
He's
smiley and happy..but I must say I think he looks a little funny. All
the docs
and nurses keep telling me he will "grow into" his face. I know they
advanced
him 18 mm..which is a lot, but they didn't want to have to it again
in a few
yrs. But that smile is a great sight to see..I must say, I didn't think
I'd be
sitting here one week post-op w/ a happy baby!! They are all amazing
little
creatures. I'd still have my PAC pump going!!
Anyway..AS I ran out of the hospital before our doctors could change
their
mind, I was not given one important piece of ingo...when do the stiches
come
out?????? I am sure Jordan would appreciate me finding out !!!
Again, thank you all so much for your ongoing support and guidance
through all of this. I feel like I went into it w/ my eyes wide open,
thanks
to ya'll, and that really helped when we went to see him for the first
time,
and through the healing process.
Now its off to do laundry, pay bills, bathe neglected Alex (gee..has
he even
been outside to potty all week???) and try to get back to some level
of
normalacy.
Thanks again, and its good to be back
Jenn (Tampa/St. Pete)
=========================================================================
Date: Tue, 17 Feb 1998
09:42:43 EST
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From: Lynn Thornquist
<Thornq@AOL.COM>
Subject: Re: Painful Teeth
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Robyn,
Thank you for the information. Andrew has the same toothbrush,
but his has
cookie monster on it. As for a favorite stuffed animal or such,
he has never
bonded to anything. Unfortunately, he is not a self pacifier.
But I will try
getting another toothbrush for him to hold while I brush his teeth.
The top
teeth are also more sensitive than the bottom ones.
So far, Andrew's teeth are not crowded, although they do come in sporadically.
He got his top two teeth first, then the bottom two, then one on the
top left
and now finally one on the bottom right. I never know where they
are going to
come in next.
Thank you again for the info. Talk to you soon.
Lynn
=========================================================================
Date: Tue, 17 Feb 1998
09:48:53 EST
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From: Lynn Thornquist
<Thornq@AOL.COM>
Subject: Re: An Update
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Jenn,
Glad to hear that Jordon is doing great. Andrew had a tough time
sleeping his
first nights home, but not as bad as in the hospital. I believ
that the
sutures should come out 10-14 days post-op. With Andrew's first
surgery he
had to have his in longer because of his necrosis, but his other surgeries,
the sutures were out sooner. I'm so glad your back with us and
it is really
nice to hear from you.
Give Jordon a big hug for me, and I'm happy everyone is home and well.
Lynn
=========================================================================
Date: Mon, 16 Feb 1998
12:55:16 -0500
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From: Christopher Kilner
<Christopher.Kilner@USPTO.GOV>
Subject: Re: gagging question and differences
MIME-Version: 1.0
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Our 3 year old daughter Ceci has had a slightly different gagging
problem. Since she was born, if she gets very upset while crying
she
gags and throws up. Also, small, hard foods like nuts and carrots
cause
her to gag sometimes, and of course, throw up. The doctors explained
it
as being related to the physical differences in Aperts that require
some
children to need feeding tubes. Ceci doesn't have sleep apnea or any
airway problems - just a very sensitive gag reflex.
Ceci seems to have realized that her hands are different, but rarely
focuses on it since she always seems to figure out a way to do what
she
wants with them. She understands that her hands are different
enough to
prevent her from wearing her brother's gloves ("my hands not fit -
I
need mittens") or putting her fingers into small holes, such as the
lollipop holes on her Valentine cards, like her brother does ("my
fingers too fat").
Chris Kilner, Alexandria VA
>
=========================================================================
Date: Tue, 17 Feb 1998
11:11:50 -0500
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From: Leanne Maclean
<lmaclean@NETCOM.CA>
Subject: Robin: noticing differences
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Hi Robin,
I have been meaning to say hello - thought it would be nice to hear
from
another Albertan! We live 45 minutes west of Edmonton and our
daughter,
Amy, is 2 1/2 months younger than Lindsay.
Amy started making comments on her hands just before she turned five.
She has three fingers and a thumb and can count consistently up to
39 but would skip numbers when she counted her fingers to get 10!
I think as her fifth birthday approached she wanted to show people
five fingers when they inquired how old she was going to be.
It was
on the way to the airport for her midface surgery that she finally
asked us why she only had four fingers! Since then she hasn't
really
dwelt on it - although she loves to play with our hands, opening them
up and folding the fingers shut in a way that she can't do herself.
Amy has never commented on her feet and hasn't really noticed others
when
they take a second or third look at her. She is in an incredible
early
intervention program and we are now making decisions regarding her
grade
one placement.
Hope to hear from you,
Leanne
=========================================================================
Date: Tue, 17 Feb 1998
10:37:28 -0600
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From: Bob Horning <Bob.Horning@CORP.HONEYWELL.COM>
Subject: Gagging
From: Horning Bob on Tue, Feb 17, 1998 12:10 PM
Subject: Gagging
To: Apert Listserver
When I started seeing the posts on gagging I breathed a sigh of relief....I don't remember that Krista had any trouble with that. But after a couple days it's finally struck me that she does have a little trouble swallowing certain foods (she's 10 now). It's not serious, and it helps for her to eat a bite of the difficult food, then a bite of another food, etc. to get it down. I wonder if it is a response to the same basic problem of small passages. The foods that are the worst are those that are tough or stringy. Some examples: steak, green beans (if they are a little over-ripe), carrots some times, apples with the skin left on (especially if the skin is a little tough), etc. I'm not sure if this is related to the gagging that many of you are reporting, but perhaps...
Bob Horning
=========================================================================
Date: Tue, 17 Feb 1998
12:08:13 EST
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From: Jennifer Graham
<Jenngram@AOL.COM>
Subject: Re: gagging question and differences
Mime-Version: 1.0
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Well..since Jordans surgery he too has been gagging and throwing up
whenever
he gets upset. I don't know if this is permanent and new..or just because
he
has a cough and now when he gets upset..he REALLY gets upset, gags
between
coughing and crying and then the inevitable. Not too often though.
Strange,
when he was first born they tried to tell us he had no gag reflex..If
they
only saw him now!!
Jenn (Tampa/St. Pete)
=========================================================================
Date: Tue, 17 Feb 1998
13:12:49 EST
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From: Lynn Thornquist
<Thornq@AOL.COM>
Subject: Gagging
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Just wanted to let everyone know that I have spoken to Andrew's ENT
and they
said that it sounds like he is going to need to have his tonsils and
adenoids
removed pretty soon. They also asked me if he was snoring, and
I told them
that its not horendous (sp.), but has progressivley gotten worse over
time. I
will be seeing Andrew's pediatrician today, to have Andrew's legs looked
at
because I believe he got an allergic reaction to the tape that had
been around
his legs from his toenail surgery. I intend to have his pediatrician
take a
look down his throat and see if Andrew's tonsils are enlarged.
I will let you
all know.
I guess we're not done for a year afterall. Isn't that always the way!!
Something we never mention is how wonderful how pediatricians are.
We talk
about all the other doctors and what great things they do and have
done for
our kids, but what about those wonderful pediatricians. If it
weren't for our
pediatrician, we may not have ever met Dr. Upton. He had an app.
for us to
see Dr. Upton two hours after Andrew was born, and we had a geneticist,
Dr.
Nowak, who works with Dr. Murray Feingold @ the National Birth Defects
Center,
in to see Andrew the morning after he was born. So hats off to
all those
wonderful pediatricians.
Talk to everyone later.
Lynn
(Holliston, MA)
=========================================================================
Date: Tue, 17 Feb 1998
13:27:52 +0000
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Comments: Authenticated sender is <jgibson2@POP.erols.com>
From: Judy Gibson <jgibson2@EROLS.COM>
Subject: Re: Painful Teeth
In-Reply-To: <5924019f.34e8f4b5@aol.com>
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Lyn,
> Andrew's teeth have been coming in straight so far with no
signs of
> lack of space. Has anyone else had this problem, or could it
just be that
> Andrew is 18 months old and has quite a temper?
It's probably just the age. My 2.5 year old
sometimes gives me a
fit about brushing his teeth. Matthew doesn't have Apert syndrome.
One good thing about toddlers crying when you brush
their teeth
-- the mouth is generally wide open and it's easier to brush them.
Commenting on how much easier it is to brush with the mouth wide open
like that seems to calm Matthew. It also helps if I let him "brush"
his teeth before I brush them. Then I just "check" them with
the
toothbrush to get rid of the "cavity creeps". He usually opens
wide
once I mention the cavity creeps.
Judy
=========================================================================
Date: Mon, 16 Feb 1998
22:05:47 -0500
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From: Elizabeth de
Silva <lizsilva@SRV1.TELCONET.NET>
Subject: Re: just a note
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Dear Mark, I think this is going to be a good experience.
I am sure
you will do a great job taking care of Megan.
I will let you now phone numbers (as soon as I get them) and date of
my
staying at PA. I hope I can meet you there.
Good luck as a "single father". : )
Elizabeth
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Date: Tue, 17 Feb 1998
11:38:18 -0500
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From: Jim and Kelly
Younkin <JimandKelly@YOUNKIN.COM>
Subject: Re: Trip to PA
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Elizabeth, Glad to hear you'll be coming soon! Anything we can
do to help,
we will. It isn't very cold today, but usually in PA it is still
very cold
this time of year. Be prepared for weather in the 30's and we've
had a lot
of rain this year. Take care! Kelly
=========================================================================
Date: Tue, 17 Feb 1998
11:41:03 -0500
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From: Jim and Kelly
Younkin <JimandKelly@YOUNKIN.COM>
Subject: Where do you live?
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Mark, It's hard to keep track of everyone sometimes. I know
that your
wife and daughter are in Pitt right now, but where do you all live?
We
just moved back to central PA and we're still trying to get our bearings
as
to who lives close to us now. Thanks in advance--I'm sure you
posted this
info once before but I couldn't find it when I looked back! Kelly
Younkin
and family
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Date: Tue, 17 Feb 1998
13:37:12 EST
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From: Beth Tolson <ETolson643@AOL.COM>
Subject: Re: Gagging
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Tim has had difficulty with certain foods and tends to stay away from
them by
choice. Steak is difficult for him, even when cut into small
pieces. I think
that the eating issues are caused by a variety of things including,
the
misalignment of his upper and lower teeth, his small mouth and arched
palate,
and his tendency to be a mouth breather . Tim also doesn't like
certain
consistencies; for example, he really dislikes jello and grapes.
Overall, he
has a great appetite and is a good sized sixteen year old; so, I don't
worry
too much anymore about his food intake. When he was a baby that
was a totally
different story. Feeding was a major issue (cleft palate and
all) and weight
gain during the first year was sporadic at best. So, to all of
you with
little ones, this too shall pass.
Beth Tolson
Boston
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Date: Tue, 17 Feb 1998
16:28:40 EST
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From: Gaylann Hicks
<Gaylann1@AOL.COM>
Subject: Hello
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Hello to the the family in England. It's good to have you with
us. There is
so much info on this list serv. Welcome!
Joanne in Ohio....that is a great idea on donating blood for others.
If
anyone out there needs help, I'm sure they can find it here.
To the Harmon Family... my prayers are with your family. This
is such a
difficult time you are going through. Keep up the good work.
dsprado@PENN.com...for some reason my screen is colored and cannot read
your
messages. Do anyone out there know why this happens?
Jenn...so glad Jordan is getting along. Sounds just like Blake.
Gaylann in Tennessee
Blake's grandmother
=========================================================================
Date: Tue, 17 Feb 1998
16:53:17 EST
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From: Janine Krebs
<Yonstein@AOL.COM>
Subject: Re: An Update
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Dear Jenn:
Glad to hear Jordan is home and doing well, also you and Joe.
I know for us
it was a really tough week, and the week afterward also. Emily
got her
stitches out the week after at the plastic surgeon's office.
One layer was
dissolving stitches inside and the top layer he took out a week later.
Believe it or not, there was one stitch that was a dissolvable one
that was
supposed to dissapear that didn't and stuck out the top and needed
to be "dug"
out later on.
I have to say that 4 months later and she has healed beautifully.
I also thought she looked funny. Her doctors said the same thing,
she will
grow into her face. You know what, she looks totally different
than she did
right after surgery. The bone is not protruding out so much already.
Anyway, glad to hear things went so well for you guys. Now you
can rest a
little bit, anyway.
Take care,
Janine
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Date: Tue, 17 Feb 1998
16:55:05 EST
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From: Janine Krebs
<Yonstein@AOL.COM>
Subject: Re: An Update
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Marjorie:
Thank you for the update on BJ. I'm sorry that he is in so much
pain. It
must be very difficult for you to see him suffer like that.
You are a strong, amazing woman, and I say a prayer for your family
every day.
My thoughts continue to be with you all.
Janine Krebs
=========================================================================
Date: Tue, 17 Feb 1998
14:15:56 -0500
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From: Christopher Kilner
<Christopher.Kilner@USPTO.GOV>
Subject: Re: Pediatricians
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In the first days after Ceci's birth, the most comforting news we
received was from our pediatrician, Dr. Trabert. While all the
other
doctors were throwing around terms like "mentally retarded" that they
had read in 1970s-era textbooks and telling us about all of the possible
problems Ceci might have, he told us about a boy with Apert's that
he
knew who was enrolled at the University of Colorado - and after checking
in on Ceci, his advice was to start saving for college! It was exactly
what we needed to hear at that point in time.
He has been wonderful with Ceci ever since and we've been fortunate
enough to only have to see him a few times other than check-ups.
Chris Kilner
>Something we never mention is how wonderful how pediatricians are.
We talk
>about all the other doctors and what great things they do and have
done for
>our kids, but what about those wonderful pediatricians.
=========================================================================
Date: Tue, 17 Feb 1998
18:53:13 EST
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From: Janine Krebs
<Yonstein@AOL.COM>
Subject: Re: New Subscribers,England
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Welcome Brumfitt family from England. My name is Janine
Krebs and I have two
children, Nicholas and Emily, who has Aperts. She is almost 7
months old, so
I am still getting used to this syndrome.
I am sure you will find this listserve as supportive and helpful as I have.
Best wishes,
Janine Krebs (NY)
=========================================================================
Date: Tue, 17 Feb 1998
19:00:03 EST
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From: Janine Krebs
<Yonstein@AOL.COM>
Subject: Re: An Update
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Jenn:
Lynn's letter reminded me that it was 2 weeks and not 1 week when Emily's
sutures came out. See, I told you it was all like a dream.
I think somebody
else actually lived through that period of time.
Janine
=========================================================================
Date: Tue, 17 Feb 1998
19:11:31 -0800
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From: Laurie Ann Bailey
<jkb@ELPASO.NET>
Subject: Re: An Update
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Hey! Laurie Bailey here.
I'm glad to hear that you are home with a happy baby. Sometimes when
our
kids have surgery, we wonder, "Are we doing the right thing?" And when
they come out smiling, we know that we are.
Just a warning, RSV (respiratory virus) is going around in my neck of
the
woods. Jacob contracted it sometime last Thursday or Friday. Lots of
nebulizer treatments and TLC going on here.
As always,
Laurie Bailey (El Paso, IL)
=========================================================================
Date: Tue, 17 Feb 1998
19:47:04 -0500
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From: Jack and Raquel
<jara1@BELLSOUTH.NET>
Subject: Nicole
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Hello everybody,
We are Jack and Raquel Miller from Weston/Ft. Lauderdale, Florida.
On
October 3, 1997 our daughter was born with Apert Syndrome.
We have already been to several doctors who will be treating Nicki.
As
a matter of fact, today we were at the Neurosurgeons office.
Nicole is
tentatively scheduled for her first cranial expansion when she is 6
months old (in or about April 98). The neurosurgeon explained
what he
and the plastic surgeon are going to do. However, as parents
we would
appreciate any advice/input that you can give us. Since most
of you
have already been through this, your advice is very valuable.
We have
total faith in Nicki's doctors, but only the parent(s) can really
appreciate what it is like to have a child go through what our children
must go through.
We are very glad we registered and we hope to hear from all of you soon.
Jack & Raquel Miller
=========================================================================
Date: Tue, 17 Feb 1998
22:05:32 +0000
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From: "J. G. Lindamood"
<chanan8@JUNO.COM>
Hello all!
Mark, my thoughts are with you this week. I hope you will be able
to
find a moment of peace here and there to get you through! It's
nice to
hear a husband recognizing the hard work their wives do when taking
care
of the children!
Welcome home Jordan! I was ready to contact all of my alien friends
(I
do have some personal contacts!) to see if they have seen your mother!
Thrilled to hear you are home and basking in your parent's love!
That's
the best medication!
I was talking to a friend last week about the lottery, $35 million here
this week. He asked me if I played and I said no. I would
rather be
poor than have the problems money can't fix. Thanks to my family,
I'm
not poor, nor am I finacially independent at this time, but I do have
my
blessings and you all are on that list! We are all wealthy with
blessings!
Hope all is dry, warm and well.
Joanne, if I didn't know better, it's typhoon season, in Ohio!
_____________________________________________________________________
You don't need to buy Internet access to use free Internet e-mail.
Get completely free e-mail from Juno at http://www.juno.com
Or call Juno at (800) 654-JUNO [654-5866]
=========================================================================
Date: Tue, 17 Feb 1998
22:37:16 -0400
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From: Kerri Hedinger
<khedinger@NS.GEMLINK.COM>
Subject: Re: An Update
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Laurie,
RSV is running rampid here in Va. also. Devin, my 10 month old
who has
Aperts was hospitalized this past week. He was put in isolation
because
they said that it is so contagious. Boy it really knocked him
for a loop.
He didn't need the nebulizer treatments but he sure was a sick little
boy.
I got it from him but it reacted on me like a cold. The doctors
said that
in children younger than 2 it will go directly to the lungs but in
adults it
will only be like having a cold.
Devin was dehydrated on top of that.
We had 5 other children on the Ped's floor with RSV.
Devin is feeling much better now. It took almost 2 weeks for
him to get
over it and he still has some wheezing in his lungs. They said
the wheezing
could last up to 5-6 weeks.
Hope that Jacob feels better real soon!
Kerri
-----Original Message-----
From: Laurie Ann Bailey <jkb@ELPASO.NET>
To: APERT@LISTSERV.AOL.COM <APERT@LISTSERV.AOL.COM>
Date: Tuesday, February 17, 1998 4:13 PM
Subject: Re: An Update
>Hey! Laurie Bailey here.
>I'm glad to hear that you are home with a happy baby. Sometimes when
our
>kids have surgery, we wonder, "Are we doing the right thing?" And
when
>they come out smiling, we know that we are.
>
>Just a warning, RSV (respiratory virus) is going around in my neck
of the
>woods. Jacob contracted it sometime last Thursday or Friday. Lots
of
>nebulizer treatments and TLC going on here.
>
>As always,
>Laurie Bailey (El Paso, IL)
>
=========================================================================
Date: Wed, 18 Feb 1998
14:39:55 +1300
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From: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: Re: Robin: noticing differences
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Kia Ora Robin
Hard to remember exactly but I think Amy REALLY became aware of her differences around 4-5 years old. Like Leanne's Amy she enjoys playing with my hands (they are her "babies") and often after a long play session with them she will say "I wish I had hands like yours" which is really heart-rending.
For a long time she just stared back at children - probably because "everyone" stared at her she thought that was the right thing to do. Now, at nearly 7 years these stares and comments are becoming painful to her and I think this year is going to be our toughest (so far!). She has figured out that if she wears shoes people will notice her hands, and if she wore gloves they would just concentrate on her face. I feel so sad for her, but apart from acknowledging her inner wish to be the same as others I try not to let her dwell on it, otherwise she will not learn to accept herself for the very special person that she is.
One thing to keep in mind was a piece of research that reported that children with facial differences were less affected by teasing than children who were overweight.
And she certainly has a happier smile, bigger brown eyes (and that is saying something with our high Polynesian population!) and more open nature than a lot of children in her school. We will work on keeping it that way.
All the best
Ann
NZ
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Date: Wed, 18 Feb 1998
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From: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: Dissolving Stitches (was An
Update)
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Hi Janine
>Believe it or not, there was one stitch that was a dissolvable one
that was
>supposed to dissapear that didn't and stuck out the top and needed
to be "dug"
>out later on.
We have had experiences like this. I just love the nurses that stand there and firmly state "No, it can't be, it is a dissolving stitch!" when you know darn well it is a stitch that just ain't gonna dissolve. And then they don't apologise when they investigate and find it is one.
But oh dear, I am just a mother, so how should I know!
I don't think they realise just how many times some of us go through this process. Maybe one thing they need to teach in nurse and doctor training is to read the notes and keep a mental note of the number of operations the child has gone though that the PARENTS have also gone through, and give us credit for some experience.
Great to hear of the successful surgeries - well done guys and gals. And good luck to those who are about to "front up".
Ann
NZ
>
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Date: Tue, 17 Feb 1998
22:46:22 -0400
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From: Kerri Hedinger
<khedinger@NS.GEMLINK.COM>
Subject: Re: Nicole
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Welcome to the Miller Family!!
It really sounds like you are on top of everything. At some point
and time
all of us need this family to help us learn and understand our
children and what they must go through. You came to the right
place to get
answers!!!!
I have a 10 month old son, Devin, who is scheduled for his first cranial
on
March 5th. We have had to postpone the surgery twice because
of illness.
It's quite frustrating but the support here really helps you.
Good Luck and God Bless,
Kerri
-----Original Message-----
From: Jack and Raquel <jara1@BELLSOUTH.NET>
To: APERT@LISTSERV.AOL.COM <APERT@LISTSERV.AOL.COM>
Date: Tuesday, February 17, 1998 6:13 PM
Subject: Nicole
>Hello everybody,
>
>We are Jack and Raquel Miller from Weston/Ft. Lauderdale, Florida.
On
>October 3, 1997 our daughter was born with Apert Syndrome.
>
>We have already been to several doctors who will be treating Nicki.
As
>a matter of fact, today we were at the Neurosurgeons office.
Nicole is
>tentatively scheduled for her first cranial expansion when she is
6
>months old (in or about April 98). The neurosurgeon explained
what he
>and the plastic surgeon are going to do. However, as parents
we would
>appreciate any advice/input that you can give us. Since most
of you
>have already been through this, your advice is very valuable.
We have
>total faith in Nicki's doctors, but only the parent(s) can really
>appreciate what it is like to have a child go through what our children
>must go through.
>
>We are very glad we registered and we hope to hear from all of you
soon.
>
>Jack & Raquel Miller
>
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Date: Tue, 17 Feb 1998
23:05:29 EST
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From: AOL User <MHTeach102@AOL.COM>
Subject: An Update
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This will have to be short because I need to get to the hospital again.
Well David and I met with the hospice team this morning. They advised
us not
to attempt to take BJ home again. They feel that BJ's pain level is
increasing
so much that the hospital is the only place we can even attempt to
keep him
comfortable. The doctors, hospice team and medical ethics board sat
down with
us this morning and gave us the latest set of bad news. It seems that
BJ is
going through Kidney failure, the dialysis will work for a while, but
the
doctors don't know rather or not they can fix it. His liver is still
functioning and that is good news, but that too is unpredictable. His
breathing is being sustained by the ventalator but is stable.
Where we go next is hard to say. The doctors are only giving him miniscule
odds of a recovery. I guess I knew this was coming but it is still
hard to
beleive. The doctors have asked us to begin thinking about how we want
this to
end. I don't know what to do next so I guess I will leave that up to
God.
David has asked for a second opioinion and we are trying to see if
BJ is
stable enough to be flown to Dallas Children's Hospital, If not we
have to fly
in a team of doctors from either Pittsburgh or Miami. I know it is
a long
shot, but David says he wants to do it.
I better get going now. I am sorry if this update offends anyone, I
have tried
to put this update in the most upbeat terms possible. It may be a couple
days
before I can post another update but will try to do so as soon as we
have some
better news to report
Marjorie Clare Harmon
Proud mother of Benjamin Joel Harmon 1-16-87
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Date: Tue, 17 Feb 1998
23:57:06 -0500
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From: foster <foster@ICONTECH.COM>
Subject: Jordans Home
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Welcome home to Jordan.Glad to hear you and yours are doindg well!
Also welcome to the Brumfittsand the Millers. We are the Fosters from
Pa.
and we have seven children, our youngest Billy who will be 1 year old
on
March 4th has Aperts. He just had his first cranial surgery on Feb
3rd. and
is doing very well.
You have found a wonderful place here filled with warm loving people
who
truley care and support each other.
Hope BJ is feeling better and hope everyday gets better for him and his family.
I wanted to sound off to anyone who is listening. It has nothing to
do with
Billy or Aperts but it is something I am fumming about. One Friday
my 14
year old daughter Shawna came home from school, she is a freshman in
high
school and she showed us her coat. It was burned all up the back. A
boy who
sits in back of her had been playing around with a lighter and caught
her
coat on fire. ThankGod she has only a small burn on her back. But the
school
felt there was no need to call me and tell me about this. Well I was
on the
phone early this morning and her principal said that because the boy
has
been in alot of trouble this year and has really been making an effort
to do
better they decided not to inform the police or me and NO susension
. He
will however replace the coat and have to tell his parents about what
happened. I can not beleive how they handeld this incident.
I don't feel this should be the end of it but my husband thinks we should
just drop it. Anyone out there who agrees with him? The things that
go on in
schools today are really sad. And I for one have a hard time accepting
it.
Billy got his stiches out yesterday and things look very well. He was
watching me on the phone today and was looking at me as if to say hay
mom
remember me. Of course I felt for the first time in along time that
things
were going good for him and I could concintrate on other problems and
that
felt good..
Karen
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Date: Tue, 17 Feb 1998
21:08:24 -0800
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From: Robyn Johnston
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Subject: Re: An Update
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Marjorie, God give you the strength to carry you through this.
We are
praying for you, David, BJ and your family. I hope and pray that
the new
team of doctors may shed some answers for you.
Best of wishes to you all,
Robyn Johnston
At 11:05 PM 2/17/98 EST, you wrote:
>This will have to be short because I need to get to the hospital again.
>
>
>Well David and I met with the hospice team this morning. They advised
us not
>to attempt to take BJ home again. They feel that BJ's pain level is
increasing
>so much that the hospital is the only place we can even attempt to
keep him
>comfortable. The doctors, hospice team and medical ethics board sat
down with
>us this morning and gave us the latest set of bad news. It seems that
BJ is
>going through Kidney failure, the dialysis will work for a while,
but the
>doctors don't know rather or not they can fix it. His liver is still
>functioning and that is good news, but that too is unpredictable.
His
>breathing is being sustained by the ventalator but is stable.
>
>Where we go next is hard to say. The doctors are only giving him miniscule
>odds of a recovery. I guess I knew this was coming but it is still
hard to
>beleive. The doctors have asked us to begin thinking about how we
want
this to
>end. I don't know what to do next so I guess I will leave that up
to God.
>David has asked for a second opioinion and we are trying to see if
BJ is
>stable enough to be flown to Dallas Children's Hospital, If not we
have to
fly
>in a team of doctors from either Pittsburgh or Miami. I know it is
a long
>shot, but David says he wants to do it.
>
>I better get going now. I am sorry if this update offends anyone,
I have
tried
>to put this update in the most upbeat terms possible. It may be a
couple days
>before I can post another update but will try to do so as soon as
we have
some
>better news to report
>
>Marjorie Clare Harmon
>Proud mother of Benjamin Joel Harmon 1-16-87
>
=========================================================================
Date: Tue, 17 Feb 1998
21:19:37 -0800
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From: Robyn Johnston
<robyn@ORDATA.COM>
Subject: Re: Jordans Home
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First of all, Jenn and Joe, I am glad to hear that Jordan is doing well.
He is a little trooper. I always swear that the kiddo's fare
better than
the parents in these surgeries! :-) Glad you all made it
through!
Karen, glad to hear Billy is doing well after his stiches removal.
Brenna's stiches were all dissolvable. Eventually they all worked
their
way out.
I am with you Karen on the coat burning incident. I would be pretty
upset
at the way school handled it too. Unfortunately, I do not have
much
experience in this area yet, so I'm not sure the proper channels to
take.
I feel that child should not be in a classroom though, if he is endangering
other childrens lifes, not to mention the whole school! I can
not believe
they did not reprimand him at all. Isn't it amazing some school
districts
will suspend kids for passing out asprin, but stuff like this is
overlooked! Good luck on handling this.
Welcome to all the new people on the list!
Hugs, Robyn Johnston
At 11:57 PM 2/17/98 -0500, you wrote:
>Welcome home to Jordan.Glad to hear you and yours are doindg well!
>
>Also welcome to the Brumfittsand the Millers. We are the Fosters from
Pa.
>and we have seven children, our youngest Billy who will be 1 year
old on
>March 4th has Aperts. He just had his first cranial surgery on Feb
3rd. and
>is doing very well.
>You have found a wonderful place here filled with warm loving people
who
>truley care and support each other.
>
>Hope BJ is feeling better and hope everyday gets better for him and
his
family.
>
>I wanted to sound off to anyone who is listening. It has nothing to
do with
>Billy or Aperts but it is something I am fumming about. One Friday
my 14
>year old daughter Shawna came home from school, she is a freshman
in high
>school and she showed us her coat. It was burned all up the back.
A boy who
>sits in back of her had been playing around with a lighter and caught
her
>coat on fire. ThankGod she has only a small burn on her back. But
the school
>felt there was no need to call me and tell me about this. Well I was
on the
>phone early this morning and her principal said that because the boy
has
>been in alot of trouble this year and has really been making an effort
to do
>better they decided not to inform the police or me and NO susension
. He
>will however replace the coat and have to tell his parents about what
>happened. I can not beleive how they handeld this incident.
>
>I don't feel this should be the end of it but my husband thinks we
should
>just drop it. Anyone out there who agrees with him? The things that
go on in
>schools today are really sad. And I for one have a hard time accepting
it.
>
>Billy got his stiches out yesterday and things look very well. He
was
>watching me on the phone today and was looking at me as if to say
hay mom
>remember me. Of course I felt for the first time in along time that
things
>were going good for him and I could concintrate on other problems
and that
>felt good..
>
>Karen
>
=========================================================================
Date: Wed, 18 Feb 1998
08:50:25 EST
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From: Beth Tolson <ETolson643@AOL.COM>
Subject: Re: coat incident
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Karen
I am a teacher outside of Boston and am in the process of getting my
master's
degree in administration so I have lots of thoughts about schools and
how they
are run. I am also a parent of three and have never been hesitant
to confront
issues which raise red flags...and this is a red flag issue!!
I was outraged
when I read of your daughter's incident in school. I would definitely
press
charges against the boy and would consider pressing charges against
the school
for not enforcing some kind of safety code for their students.
Use of fire in
school is nothing short of dangerous and grounds for expulsion, especially
if
this is not a first time incident for the boy involved. If this
kind of
behavior is condoned, what next? Replacing the coat is not the
issue
here...school safety is the issue. My two cents worth....
Beth
=========================================================================
Date: Wed, 18 Feb 1998
08:59:36 EST
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From: Karen Kirby-Hall
<Unclbennie@AOL.COM>
Subject: Questions
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In a message dated 98-02-17 22:50:31 EST, you write:
<< APERT@LISTSERV.AOL.COM >>
to all on this list. I am a nurse in the Chicago land area, and
I work with
medically fragile children. I couple of nurses and I have gotten
together and
we are working on a text book geared toward healthcare providers.
This text
will hopefully assist nurses, doctors, technicians etc., on caring
for the
families and children who have a
severe medical problem. One of the things we want to include
is concerns of
parents and solutions from parents. We ( the nurses working on
this book)
believe it has to be a team effort with anyone involved in the childs
care
giving input and understanding all plans of care. What I would
like to ask
you as a group, is if I develop a questionaire, would you be willing
to take a
few minutes ( I know your all busy) to fill it out. We would
like to include
some of the answers in the text, so I will have you sign consents to
release
the info. Other things we are interested in is how your needs
change as your
child grows older. One thing I have seen, is that parents mourn
the loss of
"normal development". Such as one mom I worked with was really
upset when she
realized that her 16 year old would never drive a car. That wasn't
an issue
two years before that. Anyway, anyone interested please e-mail
me privately
and I will send out consents and hopefully we will have the questionare
completed in the next two months or so.
I have also noted that there are individuals who seem to range in age
from
teenagers to adults who have Aperts, I would be interested in hearing
from you
on how you should be involved in your health care and what we as health
care
professionals can do to make you part of the team. I strongly
believe that
the individual being treated has every right to be involved in decision
making, but that doesn't always happen. Any assistance
would be appreciated.
Thanks
Karen Kirby-Hall RN
e-mail Unclbennie@aol.com
=========================================================================
Date: Tue, 17 Feb 1998
21:43:13 -0500
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From: Elizabeth de
Silva <lizsilva@SRV1.TELCONET.NET>
Subject: Re: An Update
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Marjorie, I do not know what to say... you and your family are
part of
our hearts, minds, life. We will continue praying for BJ, and
asking
for strength and wisdom for you and David. I think it is a good
thing
to obtain a second opinion, as long as BJ fights you have to do the
same
( I know it is easier to say than to do so).
All our love and our prays are with you.
Elizabeth.
> Marjorie Clare Harmon
> Proud mother of Benjamin Joel Harmon 1-16-87
=========================================================================
Date: Tue, 17 Feb 1998
21:51:10 -0500
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From: Elizabeth de
Silva <lizsilva@SRV1.TELCONET.NET>
Subject: Re: Jordans Home
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>
Karen,
> I don't feel this should be the end of it but my husband thinks we
> should
> just drop it. Anyone out there who agrees with him? The things that
go
> on in
> schools today are really sad. And I for one have a hard time accepting
> it.
I totally agree with you. I can not believe the schooll is doing
nothing!! This boy could have hurt your girl!! If we feel our children's
safety is in danger we have all the right to fight for it. Replacing
the coat and leave things as they are is not the solution. Now,
it was
the coat... and the next thing will be, other kid hurted? the schooll
damaged or burned?? I think you must consider asking his separation
from schooll.
> Billy got his stiches out yesterday and things look very well.
I am so glad to hear Billy is okay!!
Warm regards,
Elizabeth
=========================================================================
Date: Wed, 18 Feb 1998
08:41:41 -0800
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From: Scott Pengelly
<scottp@EUGENE.COM>
Subject: Good morning: Scott
Comments: To: AOL User <MHTeach102@AOL.COM>
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Good morning Marjorie, David, BJ, Jacob, Joshua and Katie:
I have just read your news.
I am sorry. I am
sorry to learn of this news, which none of us
wanted to hear. I am sorry. I am sorry to learn
that the odds appear to be against your love. That
this is possible is an outrage. That we may survive
our children is painful and unimaginable. I am with
you. I carry your message with me. You
are especially in my heart, on my mind and in my
prayers.
Love,
Scott
=========================================================================
Date: Tue, 17 Feb 1998
21:54:59 -0500
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From: Elizabeth de
Silva <lizsilva@SRV1.TELCONET.NET>
Subject: Re: Nicole
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>
Welcome to the Miller Family!!
I am Elizabeth from Guayaquil, Ecuador. I have found so much comfort,
support, friendship, love in this list. I am sure you will find
the
same. (By the way, I have a daughter-9 years old- named Nicole
too.
Isn't that a beautiful name?!!).
Welcome again,
Elizabeth
=========================================================================
Date: Wed, 18 Feb 1998
12:12:13 EST
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From: Lynn Thornquist
<Thornq@AOL.COM>
Subject: Re: An Update
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Marjorie,
Hang in there, BJ is a fighter and so are you. All my love and
prayers go out
to you, BJ, David and the rest of your family. Have you thought
about writing
a letter to the doctors in Dallas about BJ's history and seeing if
maybe they
would come at their own free will and cost. If in fact you do
pay for their
tickets, some airlines give big discounts for children and families
with
disabilities and in cases like BJ's. I believe that it is American
Airlines,
but I could be wrong.
Try to take comfort in the fact that God is watching and loving BJ everyday.
Our prayers and hopes are with you that BJ will come through this with
flying
colors. You are amazing parents, I would probably have crumbled
a long time
ago. Love to everyone and give hugs and kisses from the Thornquist
Family.
Lynn
=========================================================================
Date: Wed, 18 Feb 1998
12:23:02 EST
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From: Lynn Thornquist
<Thornq@AOL.COM>
Subject: School Incident
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Karen,
I agree with you all the way, and I know my husband would as well.
That is
the problem with kids today, we don't repremand them appropriately.
I'm not
saying that we should hit our kids to teach them a lesson, but MY GOD,
nothing
happened to this boy. The police should definately be involved
and if it were
my child, I would contact the police myself. I would let the
school board
know that I was going to do this before hand, but would do it.
This boy is
obviously not trying to change in the least bit, because why would
he be
lighting a lighter or flame in a school classroom in the first place.
I don't
blame it all on the boy and the school, I believe that his parents
just as
responsible. If I were you, I would not let it rest, but it is
something that
you, your husband, and your daughter need to discuss. Because
if you pursue
this, it may get ugly with the school and the other kids parents.
What should
first happen is the principal should be FIRED!!!!!! You should
have been
notified. Any parent should be notified if their child catches
on fire, I
mean be real. The school has a leagal obligation to contact you.
They would
contact you if your daughter skipped class or something, and I feel
this is
far worse. Your daughter got burned for God sakes.
Well, I could go on about this, but I am getting really mad!!!!!
Schools just
aren't taken responsiblity for their kids anymore. It makes me
afraid to send
Andrew into the public school system. I wish I had the money
to send him to a
private school.
Good luck with everything.
Lynn Thornquist
(Holliston, MA)
=========================================================================
Date: Wed, 18 Feb 1998
11:38:02 -0600
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From: Kathy Sahlhoff
<sahlhoka@UWEC.EDU>
Subject: Re: gagging question and differences
In-Reply-To: <c=US%a=_%p=USPTO%l=USPTO-IS-08-980216175516Z-154@uspto-mta
-02.uspto.gov>
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My 9-year-old Joseph also has what has been described as a very sensitive
gagging reflex. It has made dentist visits very tricky.
The only way we
have been able to get x-rays of his teeth is when he is under anesthesia.
He will need braces and they would like to put in a permanent retainer
to
help correct a sub mucus cleft, but cannot do any work that requires
putting something in his mouth without causing him to gag and throw
up.
Has anyone experienced any strategies that work?
Thanks.
Kathy
At 12:55 PM 2/16/98 -0500, you wrote:
>Our 3 year old daughter Ceci has had a slightly different gagging
>problem. Since she was born, if she gets very upset while crying
she
>gags and throws up. Also, small, hard foods like nuts and carrots
cause
>her to gag sometimes, and of course, throw up. The doctors explained
it
>as being related to the physical differences in Aperts that require
some
>children to need feeding tubes. Ceci doesn't have sleep apnea or any
>airway problems - just a very sensitive gag reflex.
>
>Ceci seems to have realized that her hands are different, but rarely
>focuses on it since she always seems to figure out a way to do what
she
>wants with them. She understands that her hands are different
enough to
>prevent her from wearing her brother's gloves ("my hands not fit -
I
>need mittens") or putting her fingers into small holes, such as the
>lollipop holes on her Valentine cards, like her brother does ("my
>fingers too fat").
>
>Chris Kilner, Alexandria VA
>>
>
>
=========================================================================
Date: Wed, 18 Feb 1998
04:22:19 EST
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From: Marianne Camous
<Camous@AOL.COM>
Subject: Re: An Update
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In a message dated 98-02-17 20:14:17 EST, you write:
<< ust a warning, RSV (respiratory virus) is going around in my
neck of the
woods. Jacob contracted it sometime last Thursday or Friday.
>>
RSV is an epithet in our house. Evan has rarely been hospitalized without
contracting RSV or influenza. He's even brought it home and shared
it!! RSV
is a tough "bug" requiring lots of attention, breathing treatments
and
sleepless nights!! As we send kudos to our pediatricians, I'll add
one to our
new one, Dr Jeanne Vadhanasindhu (Dr Jeannie to old and young!). She
recently
treated Evan on my clinical findings instead of having me bring him
in as
there was a lot of RSV around and she didn't want him to pick it up
in the
office waiting room!! What a gem! In addition, she has given us her
voice mail
and e-mail and returns calls very promptly. When I needed a letter
in support
of a request to postpone a professional recertification exam for a
year on the
basis of Evan's "medical adventures" , what she wrote almost made me
weepy!
All in a very few months!!
Glad to hear the kiddos and families are doing well after surgery!!
It's a
wierd time warp while you're going through it. Sutures in the scalp
are
generally in for 10-14 days. Our craniofacial folks in Pittsburgh always
used
absorbable suture, but Evan has managed to "spit" them out every time.
A few
weeks later, we'd have to start "stitch patrol" to dig out the remaining
parts
which were venturing towards the surface. I keep wishing they'd use
staples or
a running nylon suture which can be pulled out. Beautiful plastic surgery
closures tend not to be so beautiful after all the sutures spend weeks
working
their way to the surface!
Welcome to out new British friends. Since you are in the Craniofacial
Study
Group, may I reiterate my request to publish the text of Dr Barry Jones
speech
on the wwweb page?? i read the first half in the newsletter and it
was very
good- have I missed the second part??
Marjorie Clare, (That is also my daughter's middle name- she's Katherine
Claire)
PLEASE do not EVER apologize for the tenor of any posting. We ask for
updates
because we love you and BJ and your family and pray for and think about
you
all regularly. You are an inspiration to so many of us . I, for one
heartily
appreciate the time you take in keeping us updated so we can try to
share the
ups and downs with you all and offer whatever love, friendship, and
consolation can be expressed by words on a screen. You and your family
have
given us all so much. Be brave, we're all in there praying and sending
our
love to your valiant boy and the whole family.
And to share a bit of good news..Evan saw his cranio and hand surgeons
last
week(was it that long already?? I just finished a 5 night stretch at
work and
barely know what day it is) Everyone was pleased with his progress
and no
surgeries are planned anytime soon!! We all need the break- so if the
shunt
behaves itself.....we could get spoiled!! Tomorrow he has his OT/PT
eval and
may actually get services started again. We keep moving along a small
step at
a time.
It's getting very late- I'm driving 5 first-graders to a performance
of
Rumpelstiltskin in the AM so I'm off to sleep!!
Marianne
in temporarily sunny California
=========================================================================
Date: Wed, 18 Feb 1998
11:09:03 -0800
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From: Penny Halverson
<phalvers@U.WASHINGTON.EDU>
Subject: IRC's Chat Tonite! 02/18/98
Comments: To: Crouzon Syndrome Support Group & Other Craniofacial
Anomalies
<crouzon@u.washington.edu>
MIME-Version: 1.0
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Hi everyone!!!
Tonite is ApertCrouzon Chat Nite!! So let's get acquainted with
each
others. :-) Keep in mind that some people will show up
alittle later
than the time started. Please join us!!!
:-)
Date To Meet On: Wednesday, February 18, 1998
IRC Server: ChatNet (Any locations)
Port Setting: 6667
Channel: #ApertCrouzon
Time: 11:00pm AT/10:00pm ET/9:00pm CT/8:00pm MT/7:00pm PT/5:00pm HT
If you haven't had a chance to download the mIRC for Windows 3.x and
95
or IRCle for MAC users. Please go to download from one of these
below.
To check out the mIRC Help Page for Windows 3.x and Windows 95
users at:
http://www.qni.com/~kristib/mirc1.html
You can download mIRC 5.31 there.
For MAC Users: Please download IRCle at:
http://www.amug.org/~ircle/
If anyone needs help or have questions on accessing the chat on ChatNet.
please email to Kristi at either:
mailto:kristib@qni.com
Or for a quicker assistance, you can reach Kristi on AOL IM (AOL Instant
Messenger) and she will be available to assist you - see below:
Kristi's screen-name: LilOneB (anytimes)
You can download the AOL IM (AOL Instant Messenger) at:
http://www.aol.com/aim
You don't have to be a member to join AOL IM and it is free!
AOL IM is an one to one online chat.
Hugs, Penny
http://home.earthlink.net/~hwy2heaven/
mailto:hwy2heaven@earthlink.net
mailto:phalvers@u.washington.edu
=========================================================================
Date: Wed, 18 Feb 1998
12:31:54 -0700
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From: baconsmith <bluenose@TELUSPLANET.NET>
Subject: BJ and family
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Dear Marjorie, David and BJ and family,
I have been silently reading the list and watching for each of your
messages. Your last message has been so hard to read. I
wish there was
something we all could do to stop the clock and delay the very hard
decisions that you and David have to make. May you both find
the strength
and the courage to do what is best for BJ. I can't even imagine
what you
must be going through and how hard it must be to hear what the doctors
have
to say. Thinking of all of you every day from up here in Calgary.
Pat and the Peach
email to: bluenose@telusplanet.net
IM: onlypeach
shake and shake the ketchup bottle. none will come and then a lot'll
... unknown
=========================================================================
Date: Wed, 18 Feb 1998
16:01:43 +0000
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From: "J. G. Lindamood"
<chanan8@JUNO.COM>
Subject: Re: Nicole
Hello!
I just wanted to extend my "welcome to the family"! I am Joanne,
I'm 33
(and proud of it) and I have Apert's. Although I say this all
the time,
I have found out that there are people out there who don't catch that
I
am an adult with Apert's. Even though I was born before a lot
of the
technology and information available today and don't know a stitch
about
all of it, I do have 33 years of experience I am willing to share.
In
fact.. I have been invited to speak to a group of Brownies tomorrow
night
and share with them my life and what it has been like. They are
earning
a badge that focuses of physical and mental differences.
I am really
excited! This is my dream becoming reality! All I have
ever wanted to
do is help people and share my life!
Okay, I am off of my soap box. Hope all is well and warm.
_____________________________________________________________________
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Get completely free e-mail from Juno at http://www.juno.com
Or call Juno at (800) 654-JUNO [654-5866]
=========================================================================
Date: Wed, 18 Feb 1998
18:08:42 -0800
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
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and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Laurie Ann Bailey
<jkb@ELPASO.NET>
Subject: Re: An Update
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
Dear Harmons,
Our prayers are with you and yours as you travel this road. We will
put
you in a prayer chain that is familiar with Apert's kids and other
children that are critically ill.
The Baileys
Laurie, Kevin, and Jacob
=========================================================================
Date: Wed, 18 Feb 1998
19:05:26 -0800
Reply-To: Information exchange and Internet
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and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
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and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Robin MacDonald
<macdonal@GOLDEN.NET>
Subject: Re: Nicole
MIME-Version: 1.0
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J. G. Lindamood wrote:
>
> Hello!
>
> I just wanted to extend my "welcome to the family"! I am Joanne,
I'm 33
>I found your comments very encouraging..I often wonder what our daughter
is going to think some 30 years from now..and I think you have answered
it.
One question.... what has been your greatest challenge so far?
thanks very much..
=========================================================================
Date: Wed, 18 Feb 1998
20:44:39 -0500
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
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and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Jack and Raquel
<jara1@BELLSOUTH.NET>
Subject: BJ
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
The Harmon Family,
We are very sorry to hear about BJ. Our thoughts and prayers are
with
your family.
You mentioned in your email that you were thinking of coming to Miami
for a second opinion. I don't know if you were referring to the
University of Miami/Jackson Memorial Medical Center, but I just happen
to work there. I work for the Pathology department but can try
to
obtain any information that you may need/want.
Just let me know if there is any specific information that you would
like to have and I will try and get it for you. Again, God bless
and
remember that through God all things are possible.
Jack & Raquel Miller
=========================================================================
Date: Thu, 19 Feb 1998
14:46:28 +1300
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
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and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: Re: Shawna (was Jordans Home)
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Hi Karen
I can understand your reaction to the way the school handled the burning of Shawna. I can also understand the school wanting to keep a positive light on the boy's progress. However, I cannot condone their disregard for the rights of Shawna and you as her parents.
>I don't feel this should be the end of it but my husband thinks we
should
>just drop it. Anyone out there who agrees with him? The things that
go on in
>schools today are really sad. And I for one have a hard time accepting
it.
I can't speak for Howard of course (he is a "let things lie" person as well, but he is strong on taking responsibility for one's behaviour) but I agree with you, I don't think it should stop there.
My suggestion is AT LEAST that Shawna (and you of course) meet with this boy and talk about it, making him aware of the effect it has had on her. If he is learning about responsibility for his actions, then I believe it is important that he front up to the people to whom he has caused trauma, learn about the effects of his behaviour, and hopefully acknowledge the injury and provide some form of apology and compensation. It may be doing your lawns for the next month or whatever - maybe in your winter that isnt such a good suggestion, but you will get the point.
>Billy got his stiches out yesterday and things look very well. He was
>watching me on the phone today and was looking at me as if to say
hay mom
>remember me. Of course I felt for the first time in along time that
things
>were going good for him and I could concintrate on other problems
and that
>felt good..
Well done Billy.
Good luck,
Ann
NZ
=========================================================================
Date: Thu, 19 Feb 1998
14:46:26 +1300
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
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and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: Re: An Update
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Our thoughts are with you. And you could not offend.
Ann, Howard and Amy
NZ
=========================================================================
Date: Wed, 18 Feb 1998
21:28:01 -0500
Reply-To: Information exchange and Internet
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and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
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and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Mark Smith <dsprado@PENN.COM>
Subject: Trying to stay on top
MIME-Version: 1.0
Content-Type: multipart/alternative;
boundary="----=_NextPart_000_007F_01BD3CB4.1727B520"
This is a multi-part message in MIME format.
------=_NextPart_000_007F_01BD3CB4.1727B520
Content-Type: text/plain;
charset="iso-8859-1"
Content-Transfer-Encoding: quoted-printable
Thanks for all the encouragement. Well we made it through Wednesday.
=
Just 2 more days. Wow. Elizabeth, thanks for the kinds
advice. It =
wouldn't be so bad, but now after work I have to run and get Megan
at =
Grandma's house. Take her/pick her up from Church or any other
=
activity. Then when I get home I have to get my dinner, check
the phone =
messages, check the email, get the dog walked (cage cleaned up), and
our =
puppy is now a little lady so we have to be careful there and Megan
is =
really disgusted by it.
=20
Jenn, glad to hear that everything is well and that
Jordan is =
finally home. Get your sleep. You can fill us in when you
can.
About gagging.....Kayla seems to need her Chicken
cut up into really =
small bits, and as well as her string beans. I think it has something
=
to do with the way that her teeth line up. Not to good for really
=
chewing her food as well as we do and she tries to swallow it all at
one =
time. So if we don't watch it she will gag but has never thrown
up. =
Sometimes she just refuses to eat until everything is cut up nice.
=
Maybe that will help?
Jim and Kelly...we live in the NW corner of Pennsylvania....Warren
.. =
Warren County...Just 15 minutes/15miles south of Jamestown NY.
I hope =
that this helps you to locate us. About 45 miles West of Bradford
PA. =
Thanks for asking. No Problemo.
Jack and Raquel Miller.....A Big welcome to our Family. I am sure
that =
you will find more information thank you will know what to do with
from =
all of our experiences. As well as being able to contribute your
own. =
Keep us informed and updated on your special little one.
Marjorie and David...my heart goes out to you. Your entire family
is in =
my prayers tonight and every night. We all know that only God
can make =
the "correct" decision, even after all of our thought out decisions.
=
You and yours are in good hands. You can depend on us and God
to help =
you through your times. Take care my friends.
Karen...no....sometimes the best advice is our own.....do just what
you =
think you should...only then will you know that at least you have tried.
=
A boy in school that has been so much trouble and now who is
harassing =
other students should not be allowed to be at that school. Sorry
folks, =
let his parents find a school that is more appropriate for him.
Called =
the school of hard knocks!!!!! He looses.
Beth...couldn't have said it any better. You go girl!!!
My Friends, it is getting late. Michele told me that Kayla got
to go =
swimming last night and was able to play bingo tonight. She even
won =
$1.85. She was so proud that she even told me she had lots of
money =
now. I had almost 50 emails to get to tonight so....I hope I
am not =
rambling. All our friends...take care. God Bless.
Mark
=20
------=_NextPart_000_007F_01BD3CB4.1727B520
Content-Type: text/html;
charset="iso-8859-1"
Content-Transfer-Encoding: quoted-printable
<!DOCTYPE HTML PUBLIC "-//W3C//DTD W3 HTML//EN">
<HTML>
<HEAD>
<META content=3Dtext/html;charset=3Diso-8859-1 =
http-equiv=3DContent-Type>
<META content=3D'"MSHTML 4.72.2106.6"' name=3DGENERATOR>
</HEAD>
<BODY bgColor=3D#ffffff>
<DIV><FONT color=3D#000000>Thanks for all the encouragement.
Well =
we made it=20
through Wednesday. Just 2 more days. Wow.
Elizabeth, =
thanks=20
for the kinds advice. It wouldn't be so bad, but now after
work I =
have to=20
run and get Megan at Grandma's house. Take her/pick her up
from =
Church or=20
any other activity. Then when I get home I have to get my
dinner, =
check=20
the phone messages, check the email, get the dog walked (cage cleaned
=
up), and=20
our puppy is now a little lady so we have to be careful there and Megan
=
is=20
really disgusted by it.</FONT></DIV>
<DIV><FONT color=3D#000000> </FONT></DIV>
<DIV><FONT color=3D#000000> Jenn,
glad to hear that =
everything=20
is well and that Jordan is finally home. Get your sleep.
You =
can=20
fill us in when you can.</FONT></DIV>
<DIV><FONT color=3D#000000></FONT> </DIV>
<DIV><FONT color=3D#000000 size=3D2>
<FONT =
size=3D3>About=20
gagging.....Kayla seems to need her Chicken cut up into really small
=
bits, and=20
as well as her string beans. I think it has something to
do with =
the way=20
that her teeth line up. Not to good for really chewing her
food as =
well as=20
we do and she tries to swallow it all at one time. So if
we don't =
watch it=20
she will gag but has never thrown up. Sometimes she just
refuses =
to eat=20
until everything is cut up nice. Maybe that will =
help?</FONT></FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2><FONT =
size=3D3></FONT></FONT> </DIV>
<DIV><FONT color=3D#000000 size=3D2><FONT size=3D3> Jim
and =
Kelly...we live in=20
the NW corner of Pennsylvania....Warren .. Warren County...Just 15=20
minutes/15miles south of Jamestown NY. I hope that this helps
you =
to=20
locate us. About 45 miles West of Bradford PA.
Thanks for=20
asking. No Problemo.</FONT></FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2><FONT =
size=3D3></FONT></FONT> </DIV>
<DIV>Jack and Raquel Miller.....A Big welcome to our Family.
I am =
sure=20
that you will find more information thank you will know what to do
with =
from all=20
of our experiences. As well as being able to contribute your
=
own. =20
Keep us informed and updated on your special little one.</DIV>
<DIV> </DIV>
<DIV>Marjorie and David...my heart goes out to you. Your
entire =
family is=20
in my prayers tonight and every night. We all know that only
God =
can make=20
the "correct" decision, even after all of our thought
out=20
decisions. You and yours are in good hands. You
can depend =
on us and=20
God to help you through your times. Take care my friends.</DIV>
<DIV> </DIV>
<DIV>Karen...no....sometimes the best advice is our own.....do just
what =
you=20
think you should...only then will you know that at least you have =
tried. A=20
boy in school that has been so much trouble and now who is harassing
=
other=20
students should not be allowed to be at that school. Sorry
=
folks, =20
let his parents find a school that is more appropriate for him.
=
Called the=20
school of hard knocks!!!!! He looses.</DIV>
<DIV><FONT color=3D#000000></FONT> </DIV>
<DIV><FONT color=3D#000000> Beth...couldn't
have said =
it any=20
better. You go girl!!!</FONT></DIV>
<DIV><FONT color=3D#000000></FONT> </DIV>
<DIV>My Friends, it is getting late. Michele told me that
Kayla =
got to go=20
swimming last night and was able to play bingo tonight. She
even =
won=20
$1.85. She was so proud that she even told me she had lots
of =
money=20
now. I had almost 50 emails to get to tonight so....I hope
I am =
not=20
rambling. All our friends...take care. God =
Bless. =20
Mark</DIV>
<DIV><FONT color=3D#000000> </FONT></DIV></BODY></HTML>
------=_NextPart_000_007F_01BD3CB4.1727B520--
=========================================================================
Date: Wed, 18 Feb 1998
21:14:47 -0600
Reply-To: Information exchange and Internet
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and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
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and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Chad & Denise
Graham <cgraham@INFOAVE.NET>
Subject: QUESTIONARRE
MIME-version: 1.0
Content-type: text/plain; charset="us-ascii"
I accidentally deleted the e-mail message that was asking if any of
us were
interested in filling out a questionarre concerning the dealings with
children with problems. If someone could send that to me I would
appreciate it.
Hope everyone is recovering well!
Marjorie,
I pray for you to have strength to guide you and your family through
this
time. I know it has been a long road for you and you will fight
till the
end if you have too. If it is the Lord's will to bring BJ to
be with him,
I hope you know that BJ knows how much you love him and have done for
him.
I will continue to pray for a miracle for your family. God Bless!!
Denise Graham
=========================================================================
Date: Wed, 18 Feb 1998
19:29:55 -0800
Reply-To: Information exchange and Internet
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and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
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From: "Wittenburg,
Mark" <Mark_Wittenburg@TEMPE.GOV>
Subject: Re: New Subscribers,England
MIME-Version: 1.0
Content-Type: text/plain
Howdy Brumfitts!!! We are the Wittenburgs of Arizona..Mark, Kathy,
Jen,
JR and Jackie Lynn.......our little Jackie has Apert's and that is
how
we found this wonderful network. We have found this to be a great
source of information and comfort, and hope you will too. It
is
interesting to compare notes from all the families, and get different
points of view from all the different doctors. Just wanted to
say
welcome!!!! Kathy
=================================================================
Mark Wittenburg
Senior Network
Engineering Specialist
City of Tempe
http://www.tempe.gov/
602-350-8237
markwi@tempe.gov
> ----------
> From: John Brumfitt[SMTP:john@BRUMFITT.DEMON.CO.UK]
> Sent: Monday, February
16, 1998 4:14 PM
> To: APERT@LISTSERV.AOL.COM
> Subject: New Subscribers,England
>
> First of all, we would like to thank Cath and Don Sears for all their
> efforts re: Teeters Page and everything they have done to inform
> Aperts' families that they are not alone and support is at hand.
As
> new members to the Listserve, we would like to introduce ourselves
-
> Angela and John Brumfitt from Rainhill near Liverpool, England.
We
> have four children, Anna 18, John 11, James 9 and Helen 8.
> James has Aperts syndrome. We have been following some of the
most
> recent news from the members, with great interest, espesially that
of
> B J Harmon, our thoughts and prayers go out to them all at this very
> worrying time, ( may God bless them). We have followed the
amount and
> types of surgery done in America, it seems to differ somewhat from
our
> English system. James has had only one major surgery to the
skull and
> the debate is on as to the best time to do something for his mid-face.
> Our surgeons like to wait until children are 16, so the mid-face
op.
> possibly only needs to be done once and yet some of us as parents
feel
> the children would be better served cosmetically if a mid-face
> correction was performed prior to the puberty years. Thus possibly
> easing stresses from teasing and staring from other people.
> James has had numerous amounts of surgery done to his hands and it
is
> still ongoing. His hands were very severe, he has three fingers
and a
> thumb on each hand.
> We would like to thank Joanne in Ohio, for her lovely personal
> thoughts and views of her life, which we would like to print in our
> local newsletter for the Craniofacial Support Group, of which
I ,
> Angela am on the Executive Committee, if Joanne consents.
> We feel this is long enough for our opening letter, however I would
> like to say that coincidentally, my maiden name is Harmon and my
mum's
> christian name was Marjorie .
> Best Wishes to all - Angela, John and family.
>
=========================================================================
Date: Wed, 18 Feb 1998
22:36:27 -0500
Reply-To: Information exchange and Internet
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Sender: Information exchange and
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From: Mark Smith <dsprado@PENN.COM>
Subject: Fw:
Questions
MIME-Version: 1.0
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-----Original Message-----
From: Karen Kirby-Hall <Unclbennie@AOL.COM>
To: APERT@LISTSERV.AOL.COM <APERT@LISTSERV.AOL.COM>
Date: Wednesday, February 18, 1998 8:59 AM
Subject: Questions
>In a message dated 98-02-17 22:50:31 EST, you write:
>
><< APERT@LISTSERV.AOL.COM >>
>to all on this list. I am a nurse in the Chicago land area,
and I work
with
>medically fragile children. I couple of nurses and I have gotten
together
and
>we are working on a text book geared toward healthcare providers.
This
text
>will hopefully assist nurses, doctors, technicians etc., on caring
for the
>families and children who have a
>severe medical problem. One of the things we want to include
is concerns
of
>parents and solutions from parents. We ( the nurses working
on this book)
>believe it has to be a team effort with anyone involved in the childs
care
>giving input and understanding all plans of care. What I would
like to ask
>you as a group, is if I develop a questionaire, would you be willing
to
take a
>few minutes ( I know your all busy) to fill it out. We would
like to
include
>some of the answers in the text, so I will have you sign consents
to
release
>the info. Other things we are interested in is how your needs
change as
your
>child grows older. One thing I have seen, is that parents mourn
the loss
of
>"normal development". Such as one mom I worked with was really
upset when
she
>realized that her 16 year old would never drive a car. That
wasn't an
issue
>two years before that. Anyway, anyone interested please e-mail
me
privately
>and I will send out consents and hopefully we will have the questionare
>completed in the next two months or so.
>I have also noted that there are individuals who seem to range in
age from
>teenagers to adults who have Aperts, I would be interested in hearing
from
you
>on how you should be involved in your health care and what we as health
care
>professionals can do to make you part of the team. I strongly
believe that
>the individual being treated has every right to be involved in decision
>making, but that doesn't always happen. Any assistance
would be
appreciated.
>Thanks
>Karen Kirby-Hall RN
>e-mail Unclbennie@aol.com
>
=========================================================================
Date: Thu, 19 Feb 1998
08:39:58 -0600
Reply-To: Information exchange and Internet
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and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
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From: Chad & Denise
Graham <cgraham@INFOAVE.NET>
Subject: thanks
MIME-version: 1.0
Content-type: text/plain; charset="us-ascii"
Mark,
Thank you for sending the
letter to me.
Denise Graham
=========================================================================
Date: Thu, 19 Feb 1998
09:59:29 EST
Reply-To: Information exchange and Internet
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Sender: Information exchange and
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From: Jennifer Graham
<Jenngram@AOL.COM>
Subject: Fwd: 1 friend to another
Comments: To: nolph@HOTMAIL.COM, michellefield@HOTMAIL.COM
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To: CGHusker@aol.com, mljunod@gte.net, Eurofet@aol.com, Owens57@aol.com,
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DSmith8311@aol.com, JeffA711@aol.com,
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Date: Wed, 18 Feb 1998 19:14:31 EST
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To: JLK79707@aol.com, LoveBUG866@aol.com, JMason1182@aol.com, Nozualsa@aol.com,
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From: Ilyssal@aol.com
Return-path: <Ilyssal@aol.com>
To: Lenea210@aol.com, DMB1109@aol.com, Nozualsa@aol.com, SDL2001@aol.com,
JH201@TTACS.TTU.EDU
Subject: Fwd: 1 friend to another
Date: Wed, 18 Feb 1998 15:18:53 EST
Organization: AOL (http://www.aol.com)
Mime-Version: 1.0
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From: DMB1109@aol.com
Return-path: <DMB1109@aol.com>
To: Clarkent97@aol.com, Insomnia6@aol.com, Ilyssal@aol.com, Nozualsa@aol.com,
bll4857@unix.tamu.edu, TTUHOTTIES@aol.com,
TTUGirls97@aol.com
Subject: Fwd: 1 friend to another
Date: Wed, 18 Feb 1998 14:23:49 EST
Organization: AOL (http://www.aol.com)
Mime-Version: 1.0
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boundary="part6_887900371_boundary"
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From: Clarkent97@aol.com
Return-path: <Clarkent97@aol.com>
To: DMB1109@aol.com
Subject: Fwd: 1 friend to another
Date: Wed, 18 Feb 1998 02:56:22 EST
Organization: AOL (http://www.aol.com)
Mime-Version: 1.0
Content-type: multipart/mixed;
boundary="part7_887900371_boundary"
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Content-ID: <0_887900371@inet_out.mail.aol.com.15>
Content-type: text/plain; charset=US-ASCII
love ya
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From: Linz1297@aol.com
Return-path: <Linz1297@aol.com>
To: Clytie2327@aol.com
Cc: RRaquelA@aol.com, Ryan8332@aol.com, Clarkent97@aol.com, Bbw3442@aol.com,
OYSTER98@aol.com, Tcstudent@aol.com,
Thndrdan@aol.com, GoalieNW@aol.com,
Eagle715@aol.com, Sassy33849@aol.com,
ThespianTX@aol.com,
MIKEMACK81@aol.com, Sjkov@aol.com,
TKPurple13@aol.com
Subject: Fwd: 1 friend to another
Date: Wed, 18 Feb 1998 01:03:34 EST
Organization: AOL (http://www.aol.com)
Mime-Version: 1.0
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From: Clytie2327@aol.com
Return-path: <Clytie2327@aol.com>
To: RRaquelA@aol.com, GoalieNW@aol.com, JoeSmall3@aol.com, Vitaman@aol.com,
Megan_King@mail.okbu.edu,
GINAEVA@aol.com, 104434.1306@compuserve.com,
m000168@nadn.navy.mil, Linz1297@aol.com
Subject: Fwd: 1 friend to another
Date: Tue, 17 Feb 1998 19:12:32 EST
Organization: AOL (http://www.aol.com)
Mime-Version: 1.0
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boundary="part9_887900371_boundary"
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Content-transfer-encoding: 7bit
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From: JoeSmall3@aol.com
Return-path: <JoeSmall3@aol.com>
To: Clytie2327@aol.com
Subject: Fwd: 1 friend to another
Date: Tue, 17 Feb 1998 18:31:29 EST
Organization: AOL (http://www.aol.com)
Mime-Version: 1.0
Content-type: multipart/mixed;
boundary="part10_887900371_boundary"
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Content-type: message/rfc822
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From: Ejh98@aol.com
Return-path: <Ejh98@aol.com>
To: Haywo@aol.com, Sassy33894@aol.com, MegNW98@aol.com, Liz0109@aol.com,
JoeSmall3@aol.com, Futon97@aol.com
Subject: Fwd: 1 friend to another
Date: Mon, 16 Feb 1998 17:25:42 EST
Organization: AOL (http://www.aol.com)
Mime-Version: 1.0
Content-type: multipart/mixed;
boundary="part11_887900371_boundary"
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Content-type: text/plain; charset=US-ASCII
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Content-type: message/rfc822
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From: Futon97@aol.com
Return-path: <Futon97@aol.com>
To: Foote98@aol.com, Cmeeks2@aol.com, Taylorsta@aol.com, BOO2900@aol.com,
JazzKittie@aol.com, Kcdominiec@aol.com,
Kkdominiec@aol.com,
DAISEY8955@aol.com, Stepha3690@aol.com,
Shaw851131@aol.com,
Ejh98@aol.com
Subject: Fwd: 1 friend to another
Date: Mon, 16 Feb 1998 17:11:51 EST
Organization: AOL (http://www.aol.com)
Mime-Version: 1.0
Content-type: multipart/mixed;
boundary="part12_887900371_boundary"
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Content-ID: <0_887900371@inet_out.mail.aol.com.25>
Content-type: text/plain; charset=US-ASCII
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Content-ID: <0_887900371@inet_out.mail.aol.com.26>
Content-type: message/rfc822
Content-transfer-encoding: 7bit
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From: Tuinkles@aol.com
Return-path: <Tuinkles@aol.com>
To: Sunsueet@aol.com, Faust889@aol.com, SRV123381@aol.com, BHB413@aol.com,
Wolffe@aol.com, Futon97@aol.com,
BridgetLuv@aol.com, Spyderes@aol.com,
Phaeron@aol.com, VicMD311@aol.com,
Jocker9898@aol.com
Subject: Fwd: 1 friend to another
Date: Mon, 16 Feb 1998 17:05:37 EST
Organization: AOL (http://www.aol.com)
Mime-Version: 1.0
Content-type: multipart/mixed;
boundary="part13_887900371_boundary"
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Content-ID: <0_887900371@inet_out.mail.aol.com.27>
Content-type: text/plain; charset=US-ASCII
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Content-ID: <0_887900371@inet_out.mail.aol.com.28>
Content-type: message/rfc822
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Content-disposition: inline
From: Zzoom97@aol.com
Return-path: <Zzoom97@aol.com>
To: Duckling82@aol.com, Tuinkles@aol.com
Subject: Fwd: 1 friend to another
Date: Mon, 16 Feb 1998 16:36:10 EST
Organization: AOL (http://www.aol.com)
Mime-Version: 1.0
Content-type: multipart/mixed;
boundary="part14_887900371_boundary"
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Content-ID: <0_887900371@inet_out.mail.aol.com.29>
Content-type: text/plain; charset=US-ASCII
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Content-ID: <0_887900371@inet_out.mail.aol.com.30>
Content-type: message/rfc822
Content-transfer-encoding: 7bit
Content-disposition: inline
From: Nina7@aol.com
Return-path: <Nina7@aol.com>
To: Zzoom97@aol.com
Subject: Fwd: 1 friend to another
Date: Sun, 15 Feb 1998 16:23:15 EST
Organization: AOL (http://www.aol.com)
Mime-Version: 1.0
Content-type: multipart/mixed;
boundary="part15_887900371_boundary"
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Content-ID: <0_887900371@inet_out.mail.aol.com.31>
Content-type: text/plain; charset=US-ASCII
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Content-ID: <0_887900371@inet_out.mail.aol.com.32>
Content-type: message/rfc822
Content-transfer-encoding: 7bit
Content-disposition: inline
From: Raven1337@aol.com
Return-path: <Raven1337@aol.com>
To: Opamaramo@aol.com, KDett54517@aol.com, Mel101382@aol.com, Jen1163@aol.com,
Yarah15@aol.com, Gretxed@aol.com,
BballNT23@aol.com, Nina7@aol.com,
TRACK71224@aol.com, AREFIDEA@aol.com
Subject: Fwd: 1 friend to another
Date: Sun, 15 Feb 1998 14:30:10 EST
Organization: AOL (http://www.aol.com)
Mime-Version: 1.0
Content-type: multipart/mixed;
boundary="part16_887900371_boundary"
--part16_887900371_boundary
Content-ID: <0_887900371@inet_out.mail.aol.com.33>
Content-type: text/plain; charset=US-ASCII
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Content-ID: <0_887900371@inet_out.mail.aol.com.34>
Content-type: message/rfc822
Content-transfer-encoding: 7bit
Content-disposition: inline
From: Gretxed@aol.com
Return-path: <Gretxed@aol.com>
To: MRSEEY@aol.com, MRSP34@aol.com, TPdrama14@aol.com, Raven1337@aol.com,
Thunder19@aol.com, Bugs475618@aol.com,
WhiteT6096@aol.com,
Saradex@aol.com
Subject: Fwd: 1 friend to another
Date: Sun, 15 Feb 1998 10:42:03 EST
Organization: AOL (http://www.aol.com)
Mime-Version: 1.0
Content-type: multipart/mixed;
boundary="part17_887900371_boundary"
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Content-ID: <0_887900371@inet_out.mail.aol.com.35>
Content-type: text/plain; charset=US-ASCII
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Content-ID: <0_887900371@inet_out.mail.aol.com.36>
Content-type: message/rfc822
Content-transfer-encoding: 7bit
Content-disposition: inline
From: IceAngel27@aol.com
Return-path: <IceAngel27@aol.com>
To: ajk175@psu.edu, SassyLasie@aol.com, Gretxed@aol.com, BETH9481@aol.com
Subject: Fwd: 1 friend to another
Date: Thu, 12 Feb 1998 15:56:55 EST
Organization: AOL (http://www.aol.com)
Mime-Version: 1.0
Content-type: multipart/mixed;
boundary="part18_887900371_boundary"
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Content-ID: <0_887900371@inet_out.mail.aol.com.37>
Content-type: text/plain; charset=US-ASCII
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Content-ID: <0_887900371@inet_out.mail.aol.com.38>
Content-type: message/rfc822
Content-transfer-encoding: 7bit
Content-disposition: inline
From: Ellskids5@aol.com
Return-path: <Ellskids5@aol.com>
To: Sopiegirl@aol.com
Cc: Streamer21@aol.com, Missyo28@aol.com, IceAngel27@aol.com, DoeGreen@aol.com,
tony5jen@spartanburg.net
Subject: Fwd: 1 friend to another
Date: Thu, 12 Feb 1998 15:33:20 EST
Organization: AOL (http://www.aol.com)
Mime-Version: 1.0
Content-type: multipart/mixed;
boundary="part19_887900371_boundary"
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Content-ID: <0_887900371@inet_out.mail.aol.com.39>
Content-type: text/plain; charset=US-ASCII
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Content-ID: <0_887900371@inet_out.mail.aol.com.40>
Content-type: message/rfc822
Content-transfer-encoding: 7bit
Content-disposition: inline
From: Jazzi09024@aol.com
Return-path: <Jazzi09024@aol.com>
To: CKGrlNC@aol.com
Cc: TCAMedic@aol.com, CHIEFAFC@aol.com, Pdlduck@aol.com, JLicht7048@aol.com,
JSchultzNT@aol.com, HOSS1M3@aol.com,
Missy546@aol.com, Qlavender@aol.com,
JIT99@aol.com, Crackers19@aol.com,
NYSEMS31@aol.com, Maestra4@aol.com,
Ellskids5@aol.com, Joholls@aol.com,
SusieCH@aol.com, MSumner465@aol.com,
Lorene02@aol.com, Jerzygal1@aol.com
Subject: Fwd: 1 friend to another
Date: Thu, 12 Feb 1998 09:44:09 EST
Organization: AOL (http://www.aol.com)
Mime-Version: 1.0
Content-type: multipart/mixed;
boundary="part20_887900371_boundary"
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Content-ID: <0_887900371@inet_out.mail.aol.com.41>
Content-type: text/plain; charset=US-ASCII
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Content-ID: <0_887900371@inet_out.mail.aol.com.42>
Content-type: message/rfc822
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From: Jazzi09024@aol.com
Return-path: <Jazzi09024@aol.com>
To: Jazzi09024@aol.com
Subject: Re: 1 friend to another
Date: Thu, 12 Feb 1998 09:32:23 EST
Organization: AOL (http://www.aol.com)
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
In a message dated 98-02-11 16:10:59 EST, you write:
<< My friend: Hope your day is good for you.
>>>>
love love lo
ve love love lo
>>>>
ve love love love
love love love love
>>>>
love love love love l ove
love love love love
>>>>
love love love love love love love love love love
>>>>
love love love love love l ove love love love love lov
>>>>
e love love love love love love love love love love lov
>>>>
elove love love love love love love love love love love
>>>>
love love love love love love love love love love love
>>>>
love love love love love love love love love love lov
>>>>
e love love love love love love love love love lov
>>>>
e love love love love love love love love love
>>>>
love love love love love love love love l
>>>>
ove love love love love love love love
>>>>
love love love love love love lov
>>>>
e love love love love love lov
>>>>
e love love love love love
>>>>
love love love love lo
>>>>
ve love love love lo
>>>>
ve love love love
>>>>
love love love
>>>>
love love
>>>>
love lo
>>>>
ve
>>>>
>>>> Send this to
five or more people who mean the world to
you--brighten
>>>>someone's day--let them know that
you care! :) Send this back to
>>>>the person who sent it to you!
>>>>
>>>>
>>>>
>>>> < grins > have a great
day one and all !!!!!!!!!!!
>>>>
>>>> Happy Friendship Week has come
to this computer for about a month
>>>> now.
>>>> Everyone Have a Happy What Ever
:)
>>>>
>>>>
: )
>>>>
.~ ~ -.\ /.- ~~ .
Happy Online Friendship
Week!!
>>>>
> `. .'
<
>>>>
( .- -.
) Here's a flower
from me
to you,
>>>>
`- -.-~ `- -' ~-.- -'
Just in case your feeling
blue.
>>>>
( :
) _ _ .-:Know
that someone is
thinking
>>>>
~--. : .--~
.-~ .-~ } of you dearly,
>>>>
~-.--.-~.\_ .~ .-~ .~
Daily, monthly
yearly.
>>>>
\ \' \ '_ _ -~
So smile for me.
>>>>
`.`. //
And let the sun
shine
>>>>
. - ~ ~-.__`..`-.//
through,
>>>>
.-~ . - ~ }~ ~ ~-.~-.
For there's
someone,
>>>>
.' .-~ .-~
:/~-.~-./:
Somewhere,
>>>> /_~_ _
. - ~
~-.~-._ Watching
overyou.
>>>>
>>>> @~~~->@~~~->@~~~->@~~~->@~~~->@~~~->@~~~->@~~~->
>>>> @~~~->
>>>>THIS MESSAGE HAS BEEN SENT TO YOU
BECAUSE YOU MEAN
>>>>SOMETHING TO SOMEBODY.....TO
KEEP THE FRIENDSHIP OR
>>>>RELATIONSHIP GOING, PLEASE
SEND IT TO YOUR FRIENDS AND
>>>>THOSE THAT YOU LOVE. IT WILL
KEEP YOUR FRIENDSHIP OR
>>>>RELATIONSHIP GOING ON AND ON.
*Hug*
*Hug* *Hug* *Hug*
*Hug* *Hug*
*Hug* *Hug* *Hug*
*Hug* *Hug
*Hug*
*Hug* *Hug* *Hug*
*Hug* *Hug*
*Hug *Hug*
*Hug* *Hug* *Hug*
*Hug* *Hug* *Hug*
*Hug* *Hug*
*Hug* * Hug* *Hug*
*Hug* *Hug* *Hug*
*Hug*
*Hug* Hug* Hug* *Hug* *Hug*
*Hug* *Hug*
*Hug* *Hug*
*Hug* *Hug* *Hug*
*Hug*
*Hug* *Hug*
*Hug* *Hug* *Hug*
*Hug*
*Hug* *Hug*
*Hug* *Hug* *Hug*
*Hug*
*Hug* *Hug*
*Hug* *Hug*
*Hug*
*Hug
*Hug* *Hug*
*Hug*
*Hug*
>>>>>>>> Keep scrolling down...
>>>>>>>>
>>>>>>>> The Universal Rx
>>>>>>>>
>>>>>>>> No moving parts,
no batteries.
>>>>>>>> No monthly payments
and no fees;
>>>>>>>> Inflation proof,
non-taxable,
>>>>>>>> In fact, it's quite
relaxable;
>>>>>>>>
>>>>>>>> It can't be stolen,
won't pollute,
>>>>>>>> One size fits all,
do not dilute.
>>>>>>>> It uses little
energy,
>>>>>>>> But yields results
enormously.
>>>>>>>>
>>>>>>>> Relieves your tension
and your stress,
>>>>>>>> Invigorate your
happiness;
>>>>>>>> Combats depression,
makes you beam,
>>>>>>>> And elevates your
self esteem!
>>>>>>>>
>>>>>>>> Your circulation
it corrects
>>>>>>>> Without unpleasant
side effects
>>>>>>>> It is, I think,
the perfect drug:
>>>>>>>> May I prescribe,
my friend,... the hug!
>>>>>>>>
>>>>>>>> (and, of course,
fully returnable!)
>>>>>>>>
>>>>>>>>
>>>>>>>>
>>>>>>>>
THIS IS AN ELECTRONIC HUG. YOU'RE
>>>>>>>>
UNDER NO OBLIGATION TO PASS IT ON.
>>>>>>>>
FOR ONCE, NO BAD LUCK WILL BEFALL YOU
>>>>>>>>
IF YOU DON'T WANT TO OR DON'T HAVE
>>>>>>>>
TIME TO KEEP THIS THING MOVING.
>>>>>>>>
HOWEVER, MOST PEOPLE HAVE SOMEONE
>>>>>>>>
THEY WANT TO HUG. SO, WHY NOT TAKE THIS
>>>>>>>>
OPPPORTUNITY TO MAKE SOMEONE FEEL A
>>>>>>>>
LITTLE BETTER?
>>>>>>>>
>>>>>>>>
THIS CAN BE SENT TO SOMEONE WHO YOU
>>>>>>>>
KNOW NEEDS A REALLY GOOD, WARM
>>>>>>>>
HUG... OLD BEST FRIENDS, NEW BEST
>>>>>>>>
FRIENDS, PARENTS, ANYONE...
>>>>>>>>
IN THIS
>>>>>>>>
DAY AND AGE OF BOMBINGS, GUNFIGHTS,
>>>>>>>>
DEADLINES AND HATRED, I THINK THAT
>>>>>>>>
MOST PEOPLE COULD USE A GOOD HUG.
>>>>>>>>
>>>>>>>>
SO SMILE... YOU'VE JUST
>>>>>>>>
BEEN E-HUGGED FROM SOMEONE WHO
>>>>>>>>
CARES ABOUT YOU!! :) :) >>
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=========================================================================
Date: Thu, 19 Feb 1998
10:12:55 EST
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: Jennifer Graham
<Jenngram@AOL.COM>
Subject: Re: help
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
First I want to let the Harmons know that we are praying for notonly
BJs
recovery, but for some answers to some tough questions to come their
way. I do
know American Airlines offers special fares..as does Delta, for medical
reasons that is..I think you should see if the docs will come to you.
Welcome to the Brumfittsands and Millers. We are from Tampa/St. Petersburg,
FL..Hey..I was born in Ft. Lauderdale!!! Jordan is 5 mos. and just
had his
first surgery..Feel free to e-mail me (jenngram@aol.com) w/ any questions
you
may have..with it being real fresh in our memory and all..
Which bring me to my problem..JORDAN will not eat and its driving me
nuts!!!!!!!!!!! He'll eat his first feeding in the morning, after that
its a
battle, and if I get 2 oz in him I am doing good. We thought it was
b/c he had
an URI and this is what he does when that happens..but we've given
him meds
and that seems better. Now he just won't eat..I force the issue, he
gets
upset..gags..and throws up..he has a real sensitive gag reflex since
surgery..ET tube????? I knw before they pulled the tube he was gagging,
coughing and struggling quite a bit..has he developed an oral aversion?????
He
does like the pacifier though..Any experience???? Ideas??? I'm calling
speech
therapy today..as much as I don't really get along with them..I am
desperate.
We go to OT today for our initail eval, and since all Jordan will eat
is a sip
here and there I am sure he has no energy to "perform" for them.
Oh, his sutures were dissolavable..except for one where the drain was..we
took
that one out yesterday. The steri-strips were suppose to stay on until
Mon.,
but have started to peel off over night. Tahnks for the input on that
issue..and the feeding one in advance.
Jenn (Tampa/St. Pete)
=========================================================================
Date: Thu, 19 Feb 1998
18:04:49 +1100
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: Carol Hamzsak
<carolh@HOTKEY.NET.AU>
Subject: Pregnant
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
Hello everybody
Well I have just found out that I am pregnant and am expecting in
October. Im very excited but also very very scared. I want
to think
positive through this.
Will see my doctor in 3 weeks to see if I am able to have every test
available under the sun so I can cover at least a few things, this
is
what I am most scared of as they say the risks of losing the baby with
some of these tests is fairly high bur I couldn't go through any major
problems again.
Being nearly 38 this year I know I am at a greater risk but I also know
there are many out there who have babies later on in life now.
Well Ill see what the doctor says in a few weeks and we'll see whats
best. Has anyone else got any advise on this?
Bye for now
Carol
=========================================================================
Date: Thu, 19 Feb 1998
10:17:33 EST
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From: Jennifer Graham
<Jenngram@AOL.COM>
Subject: Re: Pregnant
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Carol,
Congratulations..Oct. is a wonderful month.....my b-day is 10-28!!!!!
I am
sure you will sail through w/ no problems..Do whatever you need to
to ease
your mind..pregnancy is hard enough w/o added fears!!! I do know a
level 4
ultrasound will show just about everything..but I guess that means
waiting
until everything is formed!!! Pretty late in the game. Good luck to
you..and
all those other expecting mommies and daddies out there!!! And I know
there
are a few!!!!!
Jenn (Tampa/St. Pete)
=========================================================================
Date: Thu, 19 Feb 1998
20:56:50 +1300
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From: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: Re: Trying to stay on top
Mime-Version: 1.0
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I love it! I love it! I love it!
Welcome to the World of the Mother, Mark!
Ann
NZ
At 09:28 PM 18/02/98 -0500, you wrote:
>Thanks for all the encouragement. Well we made it through Wednesday.
Just 2 more days. Wow. Elizabeth, thanks for the kinds advice.
It wouldn't be so bad, but now after work I have to run and get Megan at
Grandma's house. Take her/pick her up from Church or any other activity.
Then when I get home I have to get my dinner, check the phone messages,
check the email, get the dog walked (cage cleaned up), and our puppy is
now a little lady so we have to be careful there and Megan is really disgusted
by it.
=========================================================================
Date: Thu, 19 Feb 1998
11:28:42 EST
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From: Janine Krebs
<Yonstein@AOL.COM>
Subject: Re: Pregnant
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Carol:
Congratulations!!! Hope you are feeling well and good luck with
the tests.
Janine
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Date: Thu, 19 Feb 1998
11:29:42 EST
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From: Janine Krebs
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Subject: Re: Trying to stay on top
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Mark:
Sounds like you are doing a wonderful job staying on top. Keep
up the good
work. They'll be back soon.
Janine
=========================================================================
Date: Wed, 18 Feb 1998
23:39:55 +0000
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From: "J. G. Lindamood"
<chanan8@JUNO.COM>
Subject: challenge
Brenda - did you ask this question?
One question.... what has been your greatest challenge so far?
Wow! What a question. My immediate response to that was
developing
stable relationships. Then I thought about how hard it has been
to get a
decent job, but from what I am hearing I'm not the only one in that
boat.
It just so happened that I bought a book today titled: " How To
Start A
Conversation And Make Friends" by Don Gabor. What intrigued
me was one
of the last chapters is on how to remember names. I have such
a hard
time remembering names. It's embarrassing! Especially at
work! This
Gabor guy nailed me to the wall! He said the biggest reason we
o not
remember names is interference. Without quoting the whole chapter he
goes
on to explain that interference can be a mental thought like >my words<
"Are they going to reject me because of my differences?" I am thinking
this as the person's name is being said and I lose the name.
It makes
sense to me! Now, I want to read the rest of the book and try
to
overcome any other obstacles I have with developing relationships.
I
have put a lot of emphasis on relationships mainly because of the way
my
parents raised me, especially my dad. "Mr. Perfectionist"
didn't quite
know how to handle a child with such "imperfections" so he didn't handle
me at all. So, I am trying to make up for what I didn't get as
a kid.
I am also learning, very slowly, not to put so much emphasis on outside
relationships, but to depend on myself and God for my needs.
It's not
easy.
I hope this helps. I will continue to ponder your question, for
now, I
feel comfortable with this answer. Relationships have been my
biggest
challenge.
Joanne, in Ohio
_____________________________________________________________________
You don't need to buy Internet access to use free Internet e-mail.
Get completely free e-mail from Juno at http://www.juno.com
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Date: Thu, 19 Feb 1998
07:18:30 -0500
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From: Mark Smith <dsprado@PENN.COM>
Subject: Good Morning
MIME-Version: 1.0
Content-Type: multipart/alternative;
boundary="----=_NextPart_000_0010_01BD3D06.94BAA540"
This is a multi-part message in MIME format.
------=_NextPart_000_0010_01BD3D06.94BAA540
Content-Type: text/plain;
charset="iso-8859-1"
Content-Transfer-Encoding: quoted-printable
Good Morning to all our friends,
I hope that this morning is bringing a ray of hope into our friends
=
Marjorie and David's life. I hope that little BJ has seen it
safely =
into another morning and shed his wonderful smile into his parents
=
hearts. My prayers go out to all of you this morning as you still
=
search and seek for your answers. =20
Does anyone have a telephone number where we could
get in contact =
with our friends The Harmons. Either at the hospital or their
home =
phone number. I have tried to find a number but am not very successful
=
and my time at home this week is very limited.
Thank you in advance for any assistance that any
of you can render. =
My thoughts and prayers are with you.
Mark
------=_NextPart_000_0010_01BD3D06.94BAA540
Content-Type: text/html;
charset="iso-8859-1"
Content-Transfer-Encoding: quoted-printable
<!DOCTYPE HTML PUBLIC "-//W3C//DTD W3 HTML//EN">
<HTML>
<HEAD>
<META content=3Dtext/html;charset=3Diso-8859-1 =
http-equiv=3DContent-Type>
<META content=3D'"MSHTML 4.72.2106.6"' name=3DGENERATOR>
</HEAD>
<BODY bgColor=3D#ffffff>
<DIV><FONT color=3D#000000 size=3D2>Good Morning to all our =
friends,</FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2>I hope that this morning
is bringing =
a ray of=20
hope into our friends Marjorie and David's life. I hope that
=
little BJ has=20
seen it safely into another morning and shed his wonderful smile into
=
his=20
parents hearts. My prayers go out to all of you this morning
as =
you still=20
search and seek for your answers. </FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2></FONT> </DIV>
<DIV><FONT color=3D#000000 size=3D2>
Does anyone have =
a telephone=20
number where we could get in contact with our friends The Harmons.
=
Either=20
at the hospital or their home phone number. I have tried
to find a =
number=20
but am not very successful and my time at home this week is very=20
limited.</FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2></FONT> </DIV>
<DIV><FONT color=3D#000000 size=3D2>
Thank you in =
advance for any=20
assistance that any of you can render. My thoughts
and =
prayers are=20
with you.</FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2>Mark</FONT></DIV></BODY></HTML>
------=_NextPart_000_0010_01BD3D06.94BAA540--
=========================================================================
Date: Thu, 19 Feb 1998
11:37:14 EST
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From: Janine Krebs
<Yonstein@AOL.COM>
Subject: Re: Nicole
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Welcome to the Miller family
My name is Janine Krebs. I have two children, Nicholas and Emily,
7 months
old with Aperts. She had her cranial surgery at 3 months old.
Please feel
free to e-mail me directly if you have questions on the surgery.
I am sure you will find this list and supportive and helpful as we have.
Welcome again,
The Krebs Family (NY)
=========================================================================
Date: Thu, 19 Feb 1998
11:39:10 EST
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From: Janine Krebs
<Yonstein@AOL.COM>
Subject: Re: An Update
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Dear Marjorie and David:
Well, what do I say? What you are going through I am sure is the
hardest
thing any parent would ever have to go through. I try to imagine
it but
cannot.
My thoughts and prayers are with your whole family and BJ. Know
that God will
do the right thing for all of you.
Janine Krebs
=========================================================================
Date: Thu, 19 Feb 1998
09:09:10 -0800
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From: Robyn Johnston
<robyn@ORDATA.COM>
Subject: Re: Pregnant
Mime-Version: 1.0
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Carol,
I too am Pregnant - with our second child. He is due March 26th
- not to
far away!!! I also was/am worried that there could be something
(anything) that would affect our unborn child. I think every
parent
worries about that. It is normal! Especially if you have
had one child
with special needs. I was like you in that I wanted to be tested
for
anything out of the ordinary. I was advised by several doctors
that the
chances of having this happen are extremely small. I did go through
all of
the standard tests (for major deficiencies) and a very long and detailed
ultrasound which all came back fine. Talk to your OBGYN and discuss
what
options are available to you and do what you feel is comfortable.
Good luck with your pregnancy and enjoy it - That is if you dont have
morning sickness ;-) If you have any more specific questions
I would be
happy to answer them.
Robyn Johnston,
Eugene, OR
At 06:04 PM 2/19/98 +1100, you wrote:
>Hello everybody
>
>Well I have just found out that I am pregnant and am expecting in
>October. Im very excited but also very very scared. I
want to think
>positive through this.
>
>Will see my doctor in 3 weeks to see if I am able to have every test
>available under the sun so I can cover at least a few things, this
is
>what I am most scared of as they say the risks of losing the baby
with
>some of these tests is fairly high bur I couldn't go through any major
>problems again.
>
>Being nearly 38 this year I know I am at a greater risk but I also
know
>there are many out there who have babies later on in life now.
>
>Well Ill see what the doctor says in a few weeks and we'll see whats
>best. Has anyone else got any advise on this?
>
>Bye for now
>Carol
>
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Date: Thu, 19 Feb 1998
12:17:22 EST
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From: Lynn Thornquist
<Thornq@AOL.COM>
Subject: Re: help
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Jenn,
I'm sorry, but Andrew didn't have a problem eating after surgeries.
Actually
that's not true. After his plates were removed, he wasn't big
on eating for
about 1 1/2 weeks. He would nibble here and there, but no big
meals. The
best thing is to not push the issue. Do not force him to eat
if he does not
want to because then you will cause him to not want to eat even more.
Nibbling is ok, you will go through more bottles in a day, but its
better than
nothing.
Good luck and I'm sure that Jordon will go back to normal within the
next
week. Try to remember it is only nine days post-op.
Lynn
=========================================================================
Date: Thu, 19 Feb 1998
12:23:49 EST
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From: Lynn Thornquist
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Subject: Re: Pregnant
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Carol,
CONGRATULATIONS!!!!!! I'm so happy for you!
Andrew's doctor, Dr. Upton has told me that he has not seen two Apert
in the
same family in about 25 years or so (ones he knows of). Our geneticist
has
told us there is a test for it when your about 11 weeks, but as you
said, it
comes with risks. Don't worry about your age because there is
a woman I work
with who is 50 and she has a 12 year old daughter. She is just
as active as
her daughter so she is able to keep up, and I think that is one of
the most
important things. Remember, love is all that matters.
This a special time for you and try not to worry (easier said than done).
I
have posed the question out there, if anyone had other kids after their
Apert
child and most of them said yes. And there have not been any
problems. My
husband and I will be trying to have another baby in about a year or
so, and
I'm sure I will be worrying as much as you are. It is human to
think what
your thinking.
Lots of luck!
Lynn Thornquist
(Holliston, MA)
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Date: Thu, 19 Feb 1998
12:26:07 EST
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From: Lynn Thornquist
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Subject: Re: Good Morning
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I would love to have the Harmons address if anyone knows it!!!
Thanks!
Lynn Thornquist
(Holliston, MA)
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Date: Thu, 19 Feb 1998
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From: Lynn Thornquist
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Well I guess that Congratulations are in order for Robyn as well.
I feel
really bad that I did not know already so I am extending my GOOD LUCK
now!!!
Spring is a wonderful time to have a baby. Do you know what sex
it is?
Lynn Thornquist
(Holliston, MA)
=========================================================================
Date: Thu, 19 Feb 1998
09:59:52 -0800
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From: Robyn Johnston
<robyn@ORDATA.COM>
Subject: Re: Pregnant
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Hi Lynn, thanks for the congrats. I think I mentioned I was pregnant
when
I first found out. A while ago. Yes, he is a little - er-
I mean a big
boy! There is no privacey in the world anymore. During
our ultrasound, he
sat right on the lense - so there was no mistaking the "outdoor plumbing".
I am not real big, but it looks like I have a watermelon under my shirt!
The long way!!! he he he :-) I swear he is a linebacker
too. He is so
active he will move my whole belly - you should see the looks I get
when I
am sitting down in public and my whole shirt is rocken and rollen!
:-)
Now if the little stinker would just do a flip. He is still breach.
I am excited to have him, but a little scared too. I guess I have
given so
much of my life to the Plum, and all she has been through, that I am
having
a hard time imagining anyone else in my arms. I am sure this
will pass
once he is born. They will be 22 months apart - I think we are
in
trouble!!! :-)
Thanks again Lynn
and again congrats and Good luck Carol!!!
Hugs, Robyn Johnston
At 12:29 PM 2/19/98 EST, you wrote:
>Well I guess that Congratulations are in order for Robyn as well.
I feel
>really bad that I did not know already so I am extending my GOOD LUCK
now!!!
>Spring is a wonderful time to have a baby. Do you know what
sex it is?
>
>Lynn Thornquist
>(Holliston, MA)
>
=========================================================================
Date: Thu, 19 Feb 1998
10:21:43 -0800
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From: "Pulido, Laura"
<PulidoL@OR.CSMC.EDU>
Subject: Re: Pregnant
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Hello everyone,
When Martha was born, the Genetics Department at Cedars-Sinai
Medical
Center had Martha's blood checked to see her chromosome pattern.
When I
was pregnant with my second child I had an amnio and a few ultrasounds.
With the amnio, two tubes of fluid were taken. One was to check
the
baby for Aperts and the other was to run a regular check. The
center
where I was sent for my second child said that if my second baby had
Aperts that it would be the same pattern as Martha's and that's what
they checked him for. I was also told that the chances for having
a
second Aperts baby (when the mutation was sporadic, meaning neither
parent has the syndrome) was less than 1%.
The type of ultrasounds I had were of higher levels than an ordinary
ultrasound. With this type of ultrasound, we could clearly see
separate
finger bones moving, opening, closing. The doctor said that if
the
fingers were webbed by skin that would not be detected.
Regardless of all the tests, I was still nervous until the day Eddie
was
delivered. When the doctor held him up and said everything was
alright,
I couldn't hold my tears back.
Best wishes to everyone.
Laura
from sunny some days, gloomy and/or rainy & flooded on other days
Los Angeles, California
(copycat to Joanne Lindamood's closings) :-)
=========================================================================
Date: Thu, 19 Feb 1998
14:45:42 EST
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From: Beth Tolson <ETolson643@AOL.COM>
Subject: Re: Pregnant
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Congrats to Carol and Robyn
I was 29 when Tim, our son with Aperts was born. He was our second
child, the
first being our daughter, Kathleen. (She is a freshman at Suffolk University
in Boston) We had our third child, Kevin, when I was 37.
For sure, we
worried more because of all we had been through with Tim. We
were assured
that our chances were very slim of having another child with Aperts.
But
spending time at Children's made us painfully aware of how many other
problems
there can be. My pediatrician kept saying, remember 97% of the
babies are
perfectly normal. In other words, our perspective was, shall
we say, a bit
warped. So...I understand how scary the pregnancy can be.
Our third child,
Kevin, was normal and healthy. Our appreciation for such a healthy
baby was
enhanced by our experiences. We have enjoyed every minute of
his babyhood and
never worried too much about the little stuff. He has completed
our family
and we are so happy that we decided to have another child. We
all have a
place at the table and it feels so right.
Beth Tolson
Boston, MA
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Date: Thu, 19 Feb 1998
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From: Andrea Gartner
<LUVS2WRTE@AOL.COM>
Subject: Re: Pregnant
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Dear Carol & Robyn
Congrat's on your pregnancy. I hope all goes well. By the
way, Andrea is a
very beautiful name for a girl. (Just teasing)
-Andrea
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Date: Thu, 19 Feb 1998
15:46:52 -0500
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From: Jim and Kelly
Younkin <JimandKelly@YOUNKIN.COM>
Subject: Physical therapy
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Hi everyone! Just a quick question. We've finally finished
the exhausting
round of evaluations for Sara's new Early Intervention program (Marianne-I
can certainly sympathize with you on this one!) and she starts with
her new
physical therapist tomorrow. The goals this new team has suggested
are
much more aggressive than the ones proposed by our first team, but
that's
OK. The part I'm uneasy about is that both the PT and her supervisor
have
mentioned that most of the kids start screaming and run the other way
when
she sees them coming. She seemed to take great pride in telling
me that
they usually don't like her because she works them so hard. She
seemed to
be taken aback when I told her that I wouldn't put up with Sara crying
for
a whole hour that she's here every week. We've never tried to
make Sara
feel that she's different from our 2 other kids and I certainly have
no
objection to setting higher goals for her. I also understand
that for
someone recovering from an injury or illness PT is rough, painful work.
But I don't understand why PT for a 2 year old with a slight low muscle
tone problem should have to be so rigorous that the child spends the
whole
hour crying! Have any of you ever experienced problems with your
kids
being that opposed to their PT sessions? It doesn't sound right
to me, but
I'm willing to throw the question out there to all of you in case the
problem is that I just don't know enough about it! Of course,
in either
case, I'm always right there during her PT sessions anyway, but I'd
still
like to be updated by some of you first in case I feel the need to
do
battle--the mother lion syndrome sets in!! :) Thanks in advance!
Kelly
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Date: Thu, 19 Feb 1998
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From: Jim and Kelly
Younkin <JimandKelly@YOUNKIN.COM>
Subject: Re: Pregnant
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Congratulations to all who are pregnant! (It's so hard to keep
track of
everyone sometimes!) Try to relax and take care! The Younkins
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Date: Thu, 19 Feb 1998
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From: Jim and Kelly
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Subject: Re: An Update
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Marjorie, David, BJ and family--Our prayers are with you constantly.
May
you feel God's peace no matter what happens. With love, The Younkins
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Date: Thu, 19 Feb 1998
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From: Robyn Johnston
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Subject: Re: Physical therapy
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Kelly,
Hi, just wanted to put my 2 cents in regarding PT...
I feel these kiddos should be helped to develope as typical as possible
for
their situation, and PT is a good thing. It certainly has helped
us
tremendously, but ongoing negative experiences starting at such a young
age
tends to send up a warning to me. Certain styles work for some
people
while not for others. Every situaion is different. It might
be ok to try
to give this PT a chance, but if she is too intense, I personally would
see
about requesting another PT with a more nurturing positive disposition.
This has really worked for us. You might also get some names
of other
families that she works with for refereces and call them to get their
opinions. Maybe she is real successful??? Maybe she just
exxagerated a
little about her reputation???
A couple of questions I would ask (myself)... just to ponder on...
If needed, can you request another PT?
What are the long term goals?
Will her long term goals be jeapordized if she proceeds at a slower
pace?
What is gained by being intense vs proceeding slower?
Do you want to/can you - have a positive overall experience with
PT?
Good luck,
Robyn Johnston
At 03:46 PM 2/19/98 -0500, you wrote:
>Hi everyone! Just a quick question. We've finally finished
the exhausting
>round of evaluations for Sara's new Early Intervention program (Marianne-I
>can certainly sympathize with you on this one!) and she starts with
her new
>physical therapist tomorrow. The goals this new team has suggested
are
>much more aggressive than the ones proposed by our first team, but
that's
>OK. The part I'm uneasy about is that both the PT and her supervisor
have
>mentioned that most of the kids start screaming and run the other
way when
>she sees them coming. She seemed to take great pride in telling
me that
>they usually don't like her because she works them so hard.
She seemed to
>be taken aback when I told her that I wouldn't put up with Sara crying
for
>a whole hour that she's here every week. We've never tried to
make Sara
>feel that she's different from our 2 other kids and I certainly have
no
>objection to setting higher goals for her. I also understand
that for
>someone recovering from an injury or illness PT is rough, painful
work.
>But I don't understand why PT for a 2 year old with a slight low muscle
>tone problem should have to be so rigorous that the child spends the
whole
>hour crying! Have any of you ever experienced problems with
your kids
>being that opposed to their PT sessions? It doesn't sound right
to me, but
>I'm willing to throw the question out there to all of you in case
the
>problem is that I just don't know enough about it! Of course,
in either
>case, I'm always right there during her PT sessions anyway, but I'd
still
>like to be updated by some of you first in case I feel the need to
do
>battle--the mother lion syndrome sets in!! :) Thanks in advance!
Kelly
>
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Date: Thu, 19 Feb 1998
19:05:25 EST
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From: AOL User <MHTeach102@AOL.COM>
Subject: A funny Poem
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To those that are having one of those days...............
A Poem for Moms and Dads
Now I lay me down to sleep,
I pray my sanity to keep.
For if some peace I do not find,
I'm pretty sure I'll lose my mind.
I pray I find a little quiet
Far from the daily family riot
May I lie back--not have to think
about what they're stuffing down the sink,
or who they're with, or where they're at
and what they're doing to the cat.
I pray for time all to myself
(did something just fall off a shelf?)
To cuddle in my nice, soft bed
(Oh no, another goldfish--dead!)
Some silent moments for goodness sake
(Did I just hear a window break?)
And that I need not cook or clean--
(well heck, I've got the right to dream)
Yes now I lay me down to sleep,
I pray my wits about me keep,
But as I look around I know--
I must have lost them long ago!
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Date: Thu, 19 Feb 1998
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From: AOL User <MHTeach102@AOL.COM>
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Hi everyone,
Just a short note to let you all know how we are doing. We have arranged
for a
team from San Fransico to fly in to examine BJ and give us a second
opinion.
They will be here sometime Friday Night. I don't know if I can bare
to hear
this news again. All in all BJ is unchanged from Yesterday. They are
doing a
better job at controlling his pain and that has helped me relax a little.
Right now everything is still hectic and I will admit I am a little
numb. I am
still waiting for all this to sink in. We are doing the best we can,
and have
used the nights spent in the waiting room to really talk. It helps
to know
that David and I are growing closer through all this.
I want to thank each of you for all the kindness and prayers shown to
BJ,
David, the kids and myself. I can never begin to explain what it has
meant to
me. I better go, I can't even bring myself to talk about all this yet.
Marjorie Harmon
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Date: Thu, 19 Feb 1998
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From: AOL User <MHTeach102@AOL.COM>
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I decided to take care of some neglected ends while we are being barred
from
the hospital. They have the nerve to tell us that spending 8 consecutive
days
and nights at the hospital is not good for us. They made us leave to
get some
sleep and food. Well we left, got the food but couldn't sleep. 2 out
3 ain't
that bad.
I wanted to say welcome to all the New families. I am sorry I don't
remember
all the names. You have found a very great group of people. Who for
the most
part write letters that don't make you cry. They listen to your ups,
and your
downs. They are quick to share information to help calm your fears.
But most
of all they are simply there so that you do not have to go through
this alone.
They don't even mind if you seem to ramble on.
To everyone who is pregnant Congratulations and try to enjoy it. I know
it is
hard. I worried so much through each of my 3 pregnancies after BJ's
birth. It
doesn't do a lot of good to worry but it does keep you busy.
To Mark I know you will do fine on your own. But if you learn any big
secrets
of how to do it, do share.
To Cat and Don, I was wondering if BJ's pictures ever made it to you.
To everyone I appreciate the concerns and wishes to call and write.
I would
prefer not to give out my phone number at this time. I know it sounds
selfish
but please forgive me. If you would like though I will give you my
address at
work. I would like to ask in advance that we please not ask to send
gifts of
flowers. If and when this ends we plan on having a quiet ceremony with
just
David myself and the kids, and a few other family members. I can only
pray
that you all can understand and forgive us.
Please do not be sad, BJ's life is such a blessing and he has always
been such
a happy child. I would not want anyone to remember BJ with such sad
and empty
hearts. I haven't thought about life without BJ much yet but I can
only hope
that it would be with the same joy and love he has always lived with.
I know this is a lot of rambling but please bear with me. There is something
I
need to ask. I know dearing the past 6 months I haven't always kept
up to date
with how everyone else is doing and I am sorry about that. But if things
should turn out like the doctors are thinking they might, I would like
to know
that David and I are still welcome to participate in the list. I know
our
situation will haave changed and that we won't be able to give as much
information on what to expect from surgeries, school ect but it would
still be
nice to know that we can come and chat and check up on some of our
other
"Special Angels".
Please don't be in any hurry to respond, but I just needed to voice
it. Well I
guess I better go this is getting long for even one of my ramblings.
=========================================================================
Date: Thu, 19 Feb 1998
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From: Bill Jenn &
Katey <KTGrace1@AOL.COM>
Subject: Fwd: every mom needs this one,
get a tissue!
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something we should all keep in mind
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Date: Wed, 18 Feb 1998 22:15:31 -0500
To: plantdepot@aol.com
From: momagen@mindspring.com (Karla)
Subject: every mom needs this one, get a tissue!
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>Date: Wed, 18 Feb 1998 22:13:47 -0500
>From:momagen@mindspring.com (Karla)
>Subject:every mom needs this one, get a tissue!
>
>One of these days, you'll shout, "Why don't you kids grow up and act
your
>age! "And they will. Or, "You guys get outside and find yourselves
>something to do...and don't slam the door!" And they won't.
>You'll straighten up the boys' bedroom neat and tidy: bumper stickers
>discarded, bedspread tucked and smooth, toys displayed on their shelves.
>Hangers in the closet. Animals caged. And you'll say out loud, "Now
I want
>it to stay that way." And it will.
>You'll prepare a perfect dinner with a salad that hasn't been picked
to
>death and a cake with no finger traces in the icing, and you'll say,
"Now,
>there's a meal for company." And you'll eat it alone.
>You'll say, "I want complete privacy on the phone. No dancing around.
No
>demolition crews. Silence! Do you hear?" And you'll have it.
>No more plastic tablecloths stained with spaghetti. No more bedspreads
to
>protect the sofa from damp bottoms. No more gates to trip over at
the top
>of the basement steps. No more clothespins under the sofa. No more
playpens
>to arrange a room around. No more anxious nights under a vaporizer
tent. No
>more sand in the sheets or Popeye movies in the bathroom. No more
iron-on
>patches, rubber bands for ponytails, tight boots or wet knotted
>shoestrings.
Imagine. A lipstick with a point on it. No
>baby-sitter for New Year's Eve. Laundry only once a week. Seeing a
steak
>that isn't ground. Having your teeth cleaned without a baby on your
lap. No
>PTA meetings. No car pools. No blaring radios. No one washing her
hair at
>11 o'clock at night. Having your own roll of Scotch tape.
>Think about it. No more Christmas presents made out of toothpicks
and
>library paste. No more sloppy oatmeal kisses. No more tooth fairy.
No
>giggles in the dark. No knees to heal, no responsibility. Only
a voice
>crying, "Why don't you grow up?" and the silence echoing,
>"I did."
>~Erma Bombeck
>
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Date: Thu, 19 Feb 1998
20:16:21 EST
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From: "<George Siebert>"
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Subject: Re: Response to Brenda
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Sonya,
Thanks so much for the info. I hope we're making the right decision
going
with Dr. Salyer. I recently talked to our neurosurgeon and he
mentioned Dr.
Bruce too. He did say though that he trained with Dr. Shapiro
and liked him
very much. That is who will be working with Dr. Salyer.
We are scheduled to
meet everyone on 3/10 and the surgery is set for 3/25. They have
ordered 2
units of blood and so we're trying to find another donor other than
George.
I'm not sure why he can't do 2 units. Maybe there's not enough
time since it
has to be within 14 days of surgery. I'm working on the specifics
now so we
can figure out what to do and where. I can't think of any questions
right now
but I'm sure I will before the 25th. Glad to here everyone is
doing well.
Bye for now.
Brenda
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Date: Thu, 19 Feb 1998
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From: "<George Siebert>"
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Subject: Re: New Subscribers,England
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To the Brumfitts--
Welcome to the group. Our son Jonathan has had both pinkies released
and is
scheduled for surgery on monday to release his left index finger. The
middle
fingers are joined at the tips so I'm not sure what will be the end
result.
We see the hand surgeon tomorrow. We look forward to sharing
information with
you.
The Sieberts
George, Brenda, Melissa and Jonathan
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Date: Thu, 19 Feb 1998
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From: Jennifer Graham
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Kelly,
As I am just hours from our first OT session, I only know what she told
me..and thats if they cry..its a negative experience, and don't force
the
issue. So, an hour full of crying seems a bit excessive, and nontheraputic.
And I wouldn't force a toddler into anything that may turn into a negative
experience..then you'll NEVER get cooperation.
I was very pleased with our OT, and her philosophy..although she did
say she
was one of the more conserative therapists. For what its worth I think
your
right in not promoting tourture sessions. I know I wouldn't.
Jenn (Tampa/St. Pete)
=========================================================================
Date: Thu, 19 Feb 1998
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Subject: Re: Nicole
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Jack and Raquelle-
Welcome. Please let us know if we can help in any way. Our
son Jonathan was
born on 12/6/96 and had his first cranioplasty when he was 6 months
as well.
It went very well and I'm sure yours will too. Let us know when
the surgery
is scheduled.
Best Wishes,
The Sieberts
George, Brenda, Melissa and Jonathan
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Date: Thu, 19 Feb 1998
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Marjorie,
I hope you know that you and the rest of your family are always part
of this
extended one. Like any other family, you're feelings, thoughts, and
even
ramblings are safe with us. I do hope that all of you are doing well,
you
sound as if you have found some peace. PLease know, reardless of the
outcome..BJ has touched all of our lives, he is, and always will be
an
inspiration to all. Our thoughts and prayers continue for all of ya'll.
Jenn (Tampa/ St. Pete)
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Date: Thu, 19 Feb 1998
20:50:18 +0000
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Comments: Authenticated sender is <jgibson2@POP.erols.com>
From: Judy Gibson <jgibson2@EROLS.COM>
Subject: Re: Some ramblings
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Marjorie,
How could you ever not be welcome here?
You've added so much
-- wisdom, humor, love. You are all always in my prayers.
Judy
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Date: Thu, 19 Feb 1998
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From: Judy Gibson <jgibson2@EROLS.COM>
Subject: Re: Pregnant
In-Reply-To: <34EBD991.90C@hotkey.net.au>
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> Well I have just found out that I am pregnant and am expecting in
> October. Im very excited but also very very scared. I
want to think
> positive through this.
Congratulations! I'm sure you're anxious --
but you'll feel
better once the test results are in.
>
> Will see my doctor in 3 weeks to see if I am able to have every test
> available under the sun so I can cover at least a few things, this
is
> what I am most scared of as they say the risks of losing the baby
with
> some of these tests is fairly high bur I couldn't go through any
major
> problems again.
Actually, the risks aren't so high in the right
hands. Yes,
there's a risk, but probably less than you think. Your doctor
will
fill you in.
> Being nearly 38 this year I know I am at a greater risk but I also
know
> there are many out there who have babies later on in life now.
I was 41 when my youngest was born. It makes the
pregnancy more
of a challenge (both for mom and doc), but if you take care of
yourself, things should go well. BTW, your risk of gestational
diabetes is significantly higher this time around. Consult a
dietician BEFORE that crops up. You may be able to avoid it --
or at
least to control things with diet. I know, one more thing to
worry
about. OTOH, there's good evidence that careful attention to
diet
can prevent many maternal complications as well as giving the baby
the best possible start.
Judy
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Date: Thu, 19 Feb 1998
20:52:32 EST
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From: Jennifer Graham
<Jenngram@AOL.COM>
Subject: Re: Response to Brenda
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Brenda,
You have to wait a month before you can donate the second unit of blood.
We
had that problem w/ Jordan..Joe could only donate 1 unit b/c direct
donors
have the 10-14 before their blood is used...so we crossed our fingers
on the
blood bank...Sheesh..the day of Jordans surgery it took them over an
hour to
find the unit Joe did donate. You should have seen me..I was nuts!!!!!
Good luck on the upcoming event!!!! I know you'll be glad to put it
behind
you!! SEE, I can say that now b/c I have done it myself!!!! ha!!ha!!
Jenn
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Date: Thu, 19 Feb 1998
20:56:58 EST
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From: "<George Siebert>"
<GSieb91515@AOL.COM>
Subject: Re: challenge
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Joanne,
It wasn't my question, but I loved your answer as I enjoy all
your posts.
You really should be a journalist. You really have a special
talent for
communicating on paper. I wouldn't mind reading this book too.
Brenda
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Date: Fri, 20 Feb 1998
14:59:49 +1300
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From: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: Re: help
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Hi Jennifer
For what it's worth - Amy went through a stage where she would start to feed (breastfeed) then bellow. My initial thought was that she had colic - we heard so much about colic at that stage I was sure Amy was going to suffer from it. So I mentioned it to our Plunket Nurse (unmarried, no kids = no experience) and she agreed it was probably colic. Suggested I give her some brown sugar - I just looked at her and asked sweetly "You are telling ME to give my child BROWN SUGAR?!" so her next suggestion was prune juice. In retrospect I really can't recall what these remedies were meant to achieve.
Anyway, I asked my big sister (3 strapping boys worth of experience) and she just blithely said "Maybe she isn't hungry." So, when Amy next bellowed at me I cuddled her and put her back to bed and she was fine. When I offered her her next meal she had it quite happily and we had no further problems.
I'm not certain, but I think she was probably about the same age as Jordan at that time.
Bye
Ann
NZ
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Date: Fri, 20 Feb 1998
14:59:53 +1300
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From: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: Re: Physical therapy
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Find another therapist!
Ann
NZ
>OK. The part I'm uneasy about is that both the PT and her supervisor
have
>mentioned that most of the kids start screaming and run the other
way when
>she sees them coming. She seemed to take great pride in telling
me that
>they usually don't like her because she works them so hard.
She seemed to
>be taken aback when I told her that I wouldn't put up with Sara crying
for
>a whole hour that she's here every week.
=========================================================================
Date: Thu, 19 Feb 1998
21:33:55 EST
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: Frank & Annette
Contrino <contrino@BUFFNET.NET>
Subject: Re: Trying to stay on top
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
>
>My Friends, it is getting late. Michele told me that Kayla got
to go
swimming last night and was able to play bingo tonight. She even
won $1.85.
She was so proud that she even told me she had lots of money now.
I had
almost 50 emails to get to tonight so....I hope I am not rambling.
Speaking of 50 emails...
I don't know how the rest of you feel, but I'd like to suggest we do
a
little something to cut down on the amount of messages from the list
server.
By that I mean, limit the amount of replies to a message which go to
the
server by replying directly to the poster. If we all included
our personal
email address at the end of our messages, the person replying could
post
directly to the originator of the message instead of to the list.
I
mentioned to Don around Christmas time that I was considering unsubscribing
from the list because there is no way I can keep up with the volume
of
messages posted. I've resisted saying anything because I didn't
want to
offend, and I usually only lurk and don't post. The traffic is
getting
worse as more people join the list. Lately, the list is averaging
20 or
more messages per day. With my whimpy little 486 and 14400 modem,
it takes
me forever to try to download and read through all the messages.
A good
majority of the messages are specific replies for a specific person.
I'm
not suggesting that someone not post a message which they think is
relevent
to the group, nor am I suggesting that anyone not reply to something.
I'm
just asking that when you compose a message which starts off like
"To
so-and-so...", you reply directly to them. I believe this would
help us all
since I presume I'm not the only one that works long hours, has a family,
and has a child who likes to monopolize the PC. Also, if you
would delete
all but the relevant parts of a message which you are replying to,
it would
speed up downloading of messages for us all. Thanks for reading.
Frank Contrino
contrino@buffnet.net
=========================================================================
Date: Thu, 19 Feb 1998
21:54:52 EST
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: "<George Siebert>"
<GSieb91515@AOL.COM>
Subject: Re: An Update
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
Marjorie and David,
We are glad to hear there is another team coming to give a second opinion.
No
matter what the outcome, please know that your precious BJ is being
looked
after by our almighty Lord. You and your family will continue
to be in our
prayers and we will "always" be here for you. We respect your
privacy and
just want you to know how much we love all of you. Your incredible
strength
continues to inspire me but please try to get some rest.
With all our hearts and positive thoughts,
The Sieberts
=========================================================================
Date: Thu, 19 Feb 1998
23:04:31 EST
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: "J. G. Lindamood"
<chanan8@JUNO.COM>
Subject: Harmons
Hello!
Marjorie,
You, David and the family are and always will be a part of this family.
Please don't feel you ever have to leave us! We are all connected
and
will forever will be! as always, you are in my prayers.
Joanne, in Ohio
_____________________________________________________________________
You don't need to buy Internet access to use free Internet e-mail.
Get completely free e-mail from Juno at http://www.juno.com
Or call Juno at (800) 654-JUNO [654-5866]
=========================================================================
Date: Thu, 19 Feb 1998
20:53:24 -0800
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: Lark Jarvis <lark@INVOLVED.COM>
Subject: Re: Physical therapy
In-Reply-To: <199802200159.OAA12716@cheech.ihug.co.nz>
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
At 02:59 PM 2/20/98 +1300, Ann wrote:
>Find another therapist!
Amen. Speaking as a massage therapist, here--based on what I learned
in
school and experienced based on my own experience as a former patient--for
a kid's developing nervous system--if what the PT is doing is painful,
and
there's no attempt made to AVOID it being painful (and the therapist
seems
to take some kind of weird GLEE in it being painful?!), then your child's
developing nervous system is going to be affected adversely--fight
or
flight responses, autocontractile pain responses, that sort of thing.
It
is difficult (though not impossible--very little is impossible when
you're
talking developing neurology!) to override these neurological responses
later on (I know, because I have them left over from my own childhood--the
fight or flight and autocontractile pain responses in particular .
. . They
do leave, but it takes effort . . . so much better if you can avoid
them to
begin with). BTW, so much has happened in these kinds of fields
over the
past few years that if the therapist in question hasn't done a heck
of a
lot of outside training to keep up, they may be using outdated techniques
that run totally counter to what the current prevailing philosophy
is.
BTW, I highly recommend a book called _Uncommon Voyage: Parenting
a
Special Needs Child in the World of Alternative Medicine_, by Laura
Kramer.
It does a really good job of talking about what other options
are out
there besides what the conventional, hospital-based therapists are
doing.
Available in most bookstores . . .
Good luck,
Lark Jarvis, LMT
Portland, OR
=========================================================================
Date: Fri, 20 Feb 1998
02:03:10 EST
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: "Donald A. Sears"
<CatnDon@AOL.COM>
Subject: The Harmons
Comments: To: MHTeach102@aol.com
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
Dear Harmons,
Never, never, never, never, never, NEVER think you will not be welcome
in this
family. Our home will always be your home. The same goes
for all of you!!!
Now I want to make sure everyone understands --- any questions!?!?!?
And
remember, it's not over until it's over.
BJ's pictures have been posted and I will be writing the pages sometime
tomorrow, along with pages for the following families: The Hornings
(the long
lost Krista photos!), The Neimis (non-internet), The Grahams
(Jennifer), The
Baileys, The Fosters (I need your snail mail address, must have tossed
the
envelope by mistake) and The Krebs. I'm also going to return
all the photos
from those families in the mail (plus the Wallenius photos) tomorrow,
so look
for them next week. Please forgive me if my notes in the return
envelopes are
brief, I'm kinda swamped with tax stuff at the moment, but I did want
to get
all of these great pictures and stories out there, and believe me I
have
enjoyed each and every one as I know you all will.
What I don't get done tomorrow will be done sometime this weekend.
If you
want to look at the pictures RIGHT AWAY, just follow the following
example.
Your pictures will be at www.apert.org/yourfamily/yourkid01.jpg then
02.jpg
03, etc. as in the following example:
http://www.apert.org/harmon/bj09.jpg
http://www.apert.org/graham2/graham04.jpg
For most kids I used their first name, but for some reason I sometimes
used
the last name. Try one, if it does not work, try the other!
=========================================================================
Date: Thu, 19 Feb 1998
23:23:46 -0800
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: Robyn Johnston
<robyn@ORDATA.COM>
Subject: Re: An Update
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Margorie, David and your family. As everyone has said before,
you are part
of the "family" so please continue to be here.
You all are in our hearts. I am glad you and David are able to
be together
through this tough time. Like Brenda said, please try to get
some rest
when you can though. WE are praying for you and your little trooper.
Thank you for keeping us posted.
Hugs, Robyn Johnston
=========================================================================
Date: Fri, 20 Feb 1998
06:53:44 -0500
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Mark Smith <dsprado@PENN.COM>
Subject: my two cents worth
MIME-Version: 1.0
Content-Type: multipart/alternative;
boundary="----=_NextPart_000_003E_01BD3DCC.4947B1E0"
This is a multi-part message in MIME format.
------=_NextPart_000_003E_01BD3DCC.4947B1E0
Content-Type: text/plain;
charset="iso-8859-1"
Content-Transfer-Encoding: quoted-printable
Good Morning My friends,
Well, we made it through the week alright. Michele will be home
this =
evening and I'm sure she has lots to say. I have tried to keep
her =
posted as best as I can on all the email that we have been receiving
and =
everyone's situation.
Marjorie, David, and family: Our hearts are
with you, your wishes =
will be kept. We will always welcome you with open arms.
Our home is =
your home. Our prayers are with you.
Congratulations Ladies. Best of Luck.
Trying to keep this short, running a little late
and a little on =
empty this morning. I was going to update all on Kayla's progress
from =
all of her tests, but, Michele will be home tonight and I'm sure she
=
will be able to do a much better job at it than I.
May the sun be shining in your part of the world,
and in your =
hearts. Mark
------=_NextPart_000_003E_01BD3DCC.4947B1E0
Content-Type: text/html;
charset="iso-8859-1"
Content-Transfer-Encoding: quoted-printable
<!DOCTYPE HTML PUBLIC "-//W3C//DTD W3 HTML//EN">
<HTML>
<HEAD>
<META content=3Dtext/html;charset=3Diso-8859-1 =
http-equiv=3DContent-Type>
<META content=3D'"MSHTML 4.72.2106.6"' name=3DGENERATOR>
</HEAD>
<BODY bgColor=3D#ffffff>
<DIV><FONT color=3D#000000>Good Morning My friends,</FONT></DIV>
<DIV><FONT color=3D#000000></FONT> </DIV>
<DIV><FONT color=3D#000000>Well, we made it through the week
=
alright. =20
Michele will be home this evening and I'm sure she has lots to =
say. I have=20
tried to keep her posted as best as I can on all the email that we
have =
been=20
receiving and everyone's situation.</FONT></DIV>
<DIV><FONT color=3D#000000> Marjorie,
David, and =
family: =20
Our hearts are with you, your wishes will be kept. We will
always =
welcome=20
you with open arms. Our home is your home. Our
prayers are =
with=20
you.</FONT></DIV>
<DIV><FONT color=3D#000000> Congratulations
=
Ladies. Best=20
of Luck.</FONT></DIV>
<DIV><FONT color=3D#000000> Trying
to keep this short, =
running a=20
little late and a little on empty this morning. I was going
to =
update all=20
on Kayla's progress from all of her tests, but, Michele will be home
=
tonight and=20
I'm sure she will be able to do a much better job at it than =
I.</FONT></DIV>
<DIV><FONT color=3D#000000> May
the sun be shining in =
your part=20
of the world, and in your hearts. Mark</FONT></DIV></BODY></HTML>
------=_NextPart_000_003E_01BD3DCC.4947B1E0--
=========================================================================
Date: Fri, 20 Feb 1998
11:47:13 -0500
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Don Sears <dsears@SCRS.STATE.SC.US>
Subject: Adding my thoughts to Frank
Contrino's
MIME-Version: 1.0
Content-Type: text/plain
As I've mentioned previously (and recommended to Frank), if you are
experiencing problems with the volume of messages, and you only read
your email once a day, I suggest the 'digest' option. The digest
option
gives you ONE email per day which combines all of the messages processed
by the listserv for that day. You won't get each message separately,
but you will still get to read everything said during the day.
It's a
very convenient way to limit your time retrieving email.
To convert your subscription, send the following in the BODY of a
message to listserv@listserv.aol.com
SET APERT DIGESTS
If you ever want to convert back and receive all the messages, then
send
the following to the same address:
SET APERT NODIGESTS
You'll get a confirmation message shortly after sending either of these.
----Don
=========================================================================
Date: Fri, 20 Feb 1998
12:12:19 -0500
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: "Wendy S. Pak"
<Wendy_S._Pak@RIDLEY.ON.CA>
Subject: Messages on the listserver
MIME-Version: 1.0
Content-type: text/plain; charset=iso-8859-1
Content-Transfer-Encoding: 8bit
I agree with Frank. I have been meaning to write about the same
thing. A
lot of messages are in reply to a specific person so e-mail them directly.
Not everyone needs to read about it. I end up deleting almost
all the
messages because they are not relevant - like happy birthdays, or good
luck
wishes etc. I am not saying I don't appreciate those messages,
but like
Frank said it gets cumbersome with the amount of mail going through.
My
purpose is to find out about get togethers and dealing with the adult
issues. My sister has already gone through the surgeries and
all the stuff
most of the listserver is about so I just delete the messages.
I finally
read a message I can relate to. Anyway, I know I can unsubscribe.
I do
enjoy keeping up to date about BJ however. I know Don and George
have
written about the same thing before - e-mail people directly unless
you
want the whole listserver to know something that can help a lot of
people
and not a select few.
I am just re-inforcing what Don, George, and Frank have said.
Let's keep the listserver for what is intent was. We have all
met a lot of
people on the server and can talk/e-mail them outside the server.
Take care all,
Wendy Pak
=========================================================================
Date: Fri, 20 Feb 1998
09:36:26 -0800
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: Penny Halverson
<phalvers@U.WASHINGTON.EDU>
Subject: IRC's Chat Tonite! 02/20/98
Comments: To: Crouzon Syndrome Support Group & Other Craniofacial
Anomalies
<crouzon@u.washington.edu>
MIME-Version: 1.0
Content-Type: TEXT/PLAIN; charset=US-ASCII
Hi everyone!!!
Tonite is IRC Big Chat Nite!! So let's get acquainted with each
others. :-) Keep in mind that some people will show up
alittle
later than the time started. Please join us!!!
:-)
Date To Meet On: Friday, February 20, 1998
IRC Server: ChatNet (Any locations)
Port Setting: 6667
Channel: #apertcrouzon or if noone is there, go to #widesmiles
Time: 11:00pm AT/10:00pm ET/9:00pm CT/8:00pm MT/7:00pm PT/5:00pm HT
If you haven't had a chance to download the mIRC for Windows 3.x and
95
or IRCle for MAC users. Please go to download from one of these
below.
To check out the mIRC Help Page for Windows 3.x and Windows 95
users at:
http://www.qni.com/~kristib/mirc1.html
You can download mIRC 5.31 there.
For MAC Users: Please download IRCle at:
http://www.amug.org/~ircle/
If anyone needs help or have questions on accessing the chat on ChatNet.
please email to Kristi at either:
mailto:kristib@qni.com
Or for a quicker assistance, you can reach Kristi on AOL IM (AOL Instant
Messenger) and she will be available to assist you - see below:
Kristi's screen-name: LilOneB (anytimes)
You can download the AOL IM (AOL Instant Messenger) at:
http://www.aol.com/aim
You don't have to be a member to join AOL IM and it is free!
AOL IM is an one to one online chat.
Hugs, Penny
http://home.earthlink.net/~hwy2heaven/
mailto:hwy2heaven@earthlink.net
mailto:phalvers@u.washington.edu
=========================================================================
Date: Fri, 20 Feb 1998
14:32:35 EST
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: Marianne Camous
<Camous@AOL.COM>
Subject: fingers
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
In a message dated 98-02-19 20:23:49 EST, you write:
<< The middle
fingers are joined at the tips so I'm not sure what will be the
end result.
>>
Evan's were like that- they were separated and have done well. We just
saw our
hand surgeon and she is pleased. He will need his thumbs straightened
out but
not until next year.
Marianne
=========================================================================
Date: Fri, 20 Feb 1998
15:16:12 EST
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: Bill Murphey
<WCMurph@AOL.COM>
Subject: Sammy
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
Greetings to all,
I wanted to thank you for the warm welcome many of you have given us
to this
exclusive group, and pass on a quick update of my son Sammy.
Sammy will be 2
months old next week and is doing well. He ended up spending
his first 12
days in the intensive care unit at Bethesda because of a digestive
problem,
but that has been long resolved. These days he's doing all the
things a
normal baby should be doing for his age--including the colicky crying
at
night! Fortunately, he hasn't had to have any surgeries...yet.
We're planning to move to the Little Rock area in July and have begun
talking
with the Children's Hospital there. Sounds like they have an
experienced
craniofacial team who has worked with Apert kids before. Has
anyone ever
dealt with them?
Your support and words of encouragement have really made a difference.
Thanks again!!!
Bill, Angie, Taylor, Emily, & Sam Murphey
=========================================================================
Date: Thu, 19 Feb 1998
12:21:48 -0500
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Christopher Kilner
<Christopher.Kilner@USPTO.GOV>
Subject: Re: Pregnancy
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit
Congratulations Carol . . . this is an exciting time! October
is a
great
month as my dear daughter Ceci was born October 28! Our Halloween
treat.
I was 37 when Ceci was born and 38 when Blair was born. I remember
the
nerves and tried to calm them with a faith that all would be well with
Blair. Like you, though, I wasn't interested in surprises.
So nervous
was
I that I contemplated the CVS test to learn of problems as soon as
possible--I even scheduled the appt. Then, on that morning, I
reread
all
the literature on CVS and canceled. The receptionist who took
my call
said
that CVS cancellations happened a lot! I had thought I would
do the CVS
since my own OB/GYN had the same test--she was a 30-something mom too!
Anyway, I opted for an amnio. At the particular place I went,
they had
the
statistics for the procedure. I learned that at their institute,
less
than 0.5%
of the amnios resulted in miscarriages or other complications--and
they
performed a lot of amnios since this was their business. I figured
I
was
in good hands.
My advice . . . if you decide to do an amnio, ask for the statistics
from the
place you are going. Also, ask for their literature (my place
supplied
reams of data and info), study it, and feel confident that you are
doing
the right thing for you and your baby.
With Blair, they had just discovered a way to learn about Aperts through
genetic testing. I didn't bother since in 1995 the test took
so long
I'd be
learning the results during my delivery! For that, back to faith!!
(However,
I've heard recently that Johns Hopkins Hospital in Baltimore, MD, USA
has a test protocol that only takes a month or so).
Anyway, Blair was and is a beautiful, healthy baby boy who just turned
2
on
Feb 9.
So many women are having babies in those 30-something years (three of
my
sisters-in-law had babies at ages 38,39, & 40!) that I focused
on all
the
healthy babies I learned about and rejoiced with those women.
I think
future statistics will show that the 30s make beautiful babies!!
Enjoy your pregnancy. In October I will rejoice with you and your baby.
Reggie Kilner
=========================================================================
Date: Thu, 20 Feb 1997
15:37:36 -0800
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: Longshot &
Darwin <Longshot.Darwin@MCI2000.COM>
Subject: Re: Nicole
In-Reply-To: <7b4c8757.34ec5fbc@aol.com>
MIME-version: 1.0
Content-type: text/plain; X-MAPIextension=.TXT; charset=US-ASCII
Content-transfer-encoding: 7bit
Hello Millers,
My name is Rachel. I am 24 and I have
Apert Syndrome. If you
have any questions you can email me at
longshot.darwin@mci2000.com
To everyone that is pregnant, congratulations.
To everyone having surgries good luck and those who
are home
from just having surgries welcome home.
To the Harmons, my thoughts and prayers are with you.
Rachel
longshot.darwin@mci2000.com
=========================================================================
Date: Fri, 20 Feb 1998
14:51:51 -0800
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: Penny Halverson
<phalvers@U.WASHINGTON.EDU>
Subject: Please Respond!!!!!
MIME-Version: 1.0
Content-Type: TEXT/PLAIN; charset=US-ASCII
Hi everyone
Someone had tried to email to Kristi thru the AOL instant message.
IF you have a question you wanted to ask Kristi. Please
email
to Kristi at: kristib@qni.com and explain what it is that you
need or have question on. Please respond ASAP.
Thanks!
Hugs, Penny
http://home.earthlink.net/~hwy2heaven/
mailto:hwy2heaven@earthlink.net
mailto:phalvers@u.washington.edu
---------- Forwarded message ----------
Date: Fri, 20 Feb 1998 16:44:20 -0700
From: "K. Branstetter" <kristib@qni.com>
To: phalvers@u.washington.edu
Cc: hwy2heaven@earthlink.net
Subject: HUGE HUGE Favor
Hi Penny,
While I was trying to get my crash problems solved, someone instant
messaged
me from the Apert's list. Could you post to the list and ask
that person to
either email me or instant message me this evening?? I would
appreciate it.
Thanks :-)
Hugs,
Kristi
"Each of us is different.. expect it, respect it, and accept it." Unknown
Email: mailto:kristib@qni.com AOL IM screenname: LilOneB
Homepages:
Kristi's Place at http://www.qni.com/~kristib/
Arhinia at http://www.geocities.com/HotSprings/5935/
=========================================================================
Date: Fri, 20 Feb 1998
17:29:07 -0600
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: "D. Jefferson"
<djeff@MIDWEST.NET>
Subject: Re: Hands
MIME-Version: 1.0
Content-Type: text/plain; charset=ISO-8859-1
Content-Transfer-Encoding: 7bit
Dear Friends:
When Seth came home from school today he wanted to talk. During
the past
few weeks two boys in his class have been giving him a hard time.
They
poke and tease him. Today one of the boys called him little fingers.
Seth
told me that he said, "I'm not the only person like me. There
are other
people with hands like mine." He seemed very proud of himself.
The Parks brought Levi over a few weeks ago and Seth was very interested
in
seeing Levi's hands. He has met a few people with Apert Syndrome
a few
years ago, but I don't think that he really interested. He's
ready now to
start meeting people who share common traits. He is seven and
seven is the
age of reason.
Someone mentioned that there child had said that they wish that their
parent had hands like theirs. Seth has said the same thing to
me. I find
it interesting that he didn't say, "I want hands like yours."
Seth is very
fond of his hands.
Warmly, Dori
Dori A. Jefferson
djeff@midwest.net
=========================================================================
Date: Fri, 20 Feb 1998
18:17:06 -0600
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From: Judy Amerman
<jamerman@UTI.COM>
Subject: new to this site
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Hi,
I would like to introduce myself. My name is Judy Amerman and I have
a
seven year old son with apert syndrome.
His name is Nick and we live in Morris, Il.
Nick has had 12 or 13 surgeries to late. Somehow I have lost count.
I just read about Seth being teased and thought how Nick would deal
with
that. He would do one of two things. He would just walk away or else
he
would say "God made me like this. What is your excuse?"
He has only had to do this a few times, but i am sure that the older
he
gets, the harder it will be for him. For the most part the kids
has
accepted him the way he is. I know it won' always be that way, but
we will
just take it as it comes
Hopefully you will all meet Nick and his family in a few weeks since
I will
be putting together some info for Don and get Nick his web page.
Hope to meet some new friends real soon
Sincerely, Judy
Amerman
=========================================================================
Date: Fri, 20 Feb 1998
19:47:29 EST
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From: Andrea Gartner
<LUVS2WRTE@AOL.COM>
Subject: Re: new to this site
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Hi Judy,
Welcome,
My name is Andrea, I'm a 20 year old with Apert. I live in Florida,
but am
originally from Northbrook, Illinois. My surgeries were done
by Dr. Michael
Schafer from Chicago - Rush Presbyterian.
Teasing is probably the hardest thing I have to deal with too.
I think Nick's
response is great, he's exactly right.
This is a wonderful group of people.
-Andrea
=========================================================================
Date: Fri, 20 Feb 1998
21:03:38 -0600
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From: Richard Montemayor
<rickjm@SWBELL.NET>
Subject: Re: A Little Upset!
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Dear Granny Sherri, I am 16 yaers old and i had 18 surgies and I am
from
San Antonio Texas.
sincerly Richard Montemayor
=========================================================================
Date: Fri, 20 Feb 1998
21:23:56 -0500
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From: Jack and Raquel
<jara1@BELLSOUTH.NET>
Subject: Our New Family!
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To all,
First of all, we want to thank all of you for your warm welcomes.
Andrea,
Yes we visited Dr. Wolfe. We were very impressed with him and
his work.
Nicki has another with him on the 4th of March and that is when he
and
the neurosergeon (Dr. Ragheb) will schedule her first cranial
expansion. This will be sometime in April. We will keep
you posted.
Marianne,
You mentioned that Evans fingers were joined at the tips and that he
had
them released and has done well. At what age did he have this
done?
Our daughter Nicki, has her two middle fingers the same way.
Our hand
surgeon suggested to release the index finger and pinky and straighten
the thumbs when she is 9 months old (around July). Was there
enough
bone to form two fingers (the middle two)??
Don Sears,
We also are gathering up a few pictures to send to you along with our
story so you can set up a web page for Nicki. You are our Aperts
pioneer and for that we thank you!
Again, we are happy that we joined this list and together we will get
through the good and bad times.
Jack & Raquel
=========================================================================
Date: Fri, 20 Feb 1998
21:23:19 EST
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From: Lynn Thornquist
<Thornq@AOL.COM>
Subject: Re: A funny Poem
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What a great poem, and how true!!!!!!
Lynn
=========================================================================
Date: Fri, 20 Feb 1998
21:26:30 EST
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From: Jennifer Graham
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Subject: Re: poem
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I came across this during my reading (a.k.a page flipping) during Jordans
surgery. I thought I would pass it along. My husband feels the title
should
include fathers as well..I think he is starting to feel discriminated
against..But like I told him..I just read 'em..I don't write 'em
A Mothers Promise
"I will let nothing hurt you,"
She told the child asleep
And wept because the promise
Was one she could not keep.
"But I will never hurt you,"
She said again and wept,
Knowing it a promise
No mortal ever kept.
"Life has deep hurts," she whispered,
"Which no one can avert.
God help me teach you strength and love
For conquering any hurt."
----Jane Merchant
=========================================================================
Date: Fri, 20 Feb 1998
21:27:55 EST
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From: Lynn Thornquist
<Thornq@AOL.COM>
Subject: Re: An Update
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Marjorie,
I'm glad to hear that you have another team coming to see BJ.
I think it will
be good for you and David to get a second opinion. Maybe they
can give you
the insight the other doctors couldn't. Please give BJ a big
hug and kiss for
me. Tell him that alot of people are praying and thinking about
him daily.
And ofcourse his parents too. I'm glad to hear that you and David
are getting
closer, because sometimes it works the reverse. In the end it
will be your
love that sees you through.
Lynn Thornquist
(Holliston, MA)
=========================================================================
Date: Fri, 20 Feb 1998
21:21:12 EST
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From: Lynn Thornquist
<Thornq@AOL.COM>
Subject: Re: Physical therapy
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Kelly,
Andrew absolutely adores his PT. He gives her big smiles whenever
she comes
over. Kathy has never made Andrew cry that much from a session.
Andrew had
very tight muscles when he was younger and it took alot of stretching
to
overcome it, but never did he hate a session. After Kathy would
do a little
something he didn't like, she would automatically do something he did
like.
The PT should play with the child and incorporate the actual "workout"
into
the play. I feel that is what makes a good PT. If you do
not like something
that your PT is doing or says, make sure you mention it to your service
coordinator.
Good luck with your PT.
Lynn Thornquist
(Holliston, MA)
=========================================================================
Date: Fri, 20 Feb 1998
21:30:53 EST
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From: Jennifer Graham
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Welcome to the Amerman family!! We are the Grahams, Joe,Jennifer, and
Jordan.
Jordan is 5 mos. and has apert. He just had his first cranial surgery
last
week, and we are starting on the hands soon. I just read about Nick
and it
sounds like he has great self-esteem..something we are hoping to instill
(sp?)
as well. welcome to the list..I am sure you will find many friends
here!!
Jenn (Tampa/St. Pete)
=========================================================================
Date: Fri, 20 Feb 1998
21:36:05 EST
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From: Lynn Thornquist
<Thornq@AOL.COM>
Subject: Re: Some ramblings
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Marjorie,
You could never ramble too much. You are not selfish to want to
keep things
simple. Whatever you want is what should be. Please be
assured that you are
part of us and are always welcome here at the Apert listserv.
The ones of us
who have toddlers and younger, need your wisdom, love and comfort.
Please
take comfort (if there is any) that God is doing the best he can for
BJ and
that he will keep him as beautiful and wonderful as he is.....FOREVER!!!!
Please know that someone in Holliston, MA is thinking about you
daily and
hoping your doing alright. Hang in and remember you can ALWAYS
count on all
of us to be here for you (I think I can speak for everyone when I say
that).
LOTS OF LOVE COMING YOUR WAY!!!!!
Lynn Thornquist
(Holliston, MA)
=========================================================================
Date: Fri, 20 Feb 1998
21:50:33 EST
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From: Marianne Camous
<Camous@AOL.COM>
Subject: Re: new to this site
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In a message dated 98-02-20 19:30:14 EST, you write:
<< "God made me like this. What is your excuse?" >>
Welcome Judy and family. That's the best line I've heard in a long
time. I'll
have to teach it to my son Evan (19 mo) when he gets old enough!!
Marianne Camous
San Carlos, CA
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Date: Fri, 20 Feb 1998
22:21:10 EST
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From: Lynn Thornquist
<Thornq@AOL.COM>
Subject: Re: New Subscribers,England
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To the Sieberts,
Andrew didn't have his middle and ring fingers separated until last,
they were
also joined and they have since been separated. Why did they
do the pinkie
and index finger in two different surgeries?
Lynn Thornquist
=========================================================================
Date: Fri, 20 Feb 1998
22:25:07 EST
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From: Lynn Thornquist
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Subject: Re: Trying to stay on top
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I agree!!
=========================================================================
Date: Fri, 20 Feb 1998
19:18:33 EST
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From: AOL User <MHTeach102@AOL.COM>
Subject: An Update
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Well you all got one thing right he is a little trooper. He is doing
a little
better today. And I'll take a little better anyday. He was able to
be pulled
off Dialysis and seems to be holding his own with his blood toxins.
He even
seemed a little more active today, he seemed to really start moving
when David
was singing him a song. I told David he was telling him to stop. BJ
never did
like David's singing. He was such a music critic. David and I
seem to be
doing better too got about 4 hours of sleep in our own beds last night
and
that was good. I must run need tofeed some kids and then get back.
Lots of Love,
Marjorie
I appreciate the positive responsives. I think I knew the answer but
I hopr
you understand that I did have to ask.
=========================================================================
Date: Sat, 21 Feb 1998
09:29:07 +0000
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Comments: Authenticated sender is <jgibson2@POP.erols.com>
From: Judy Gibson <jgibson2@EROLS.COM>
Subject: Re: Our New Family!
In-Reply-To: <34EE3ABC.39B1@bellsouth.net>
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> Yes we visited Dr. Wolfe. We were very impressed with him and
his work.
> Nicki has another with him on the 4th of March and that is when he
and
> the neurosergeon (Dr. Ragheb) will schedule her first cranial
> expansion. This will be sometime in April. We will keep
you posted.
Dr. Ragheb used to be here in Baltimore -- our loss is
your gain.
He didn't do anything very complex at my hospital (St Agnes),
but I
was always impressed with his kindness and professionalism. He
mostly worked out of Johns Hopkins while he was here.
Judy
=========================================================================
Date: Sat, 21 Feb 1998
20:45:03 +1300
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From: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: Re: Trying to stay on top
Mime-Version: 1.0
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Kia ora Frank et al
>I don't know how the rest of you feel, but I'd like to suggest we do
a
>little something to cut down on the amount of messages from the list
server.
My two cents worth - to a point I agree (maybe I need to do what Don suggests re the digest) and we do find the same problem with getting through the mass of messages. 300 when I got back from holidays.
>By that I mean, limit the amount of replies to a message which go to
the
>server by replying directly to the poster.
Hey, I want to know what others have to say!! It could be just what I am looking for!!
I am training myself to answer people directly when I don't think it applies to anyone else but sometimes I am in a hurry and it is easier and quicker to push the return message icon and then cut out the bits I don't refer to. Sorry about that.
However, I think it is really important that we do continue to share our thoughts and concerns. Obviously the Harmon family updates are really important to us. I also want to know about those families who are increasing their numbers, new surgical procedures, problems and successes with development and schooling, and all those areas that make our lives as parents so interesting and challenging, etc, etc.
As coordinators of the NZ Apert Network it is also important for us to know of the experiences of other families so that we can share them when the questions are raised that we don't know about - even when we do have personal experience it is great to include the experience of others because we all handle things differently. With 12 families on our list in NZ we aren't exactly covering the field of experiences!
So yes, I will try to be more aware of how I make my responses (sometimes my sense of humour overrides my being sensible though, so no promises!) but when I feel my experience may be of some use to other parents, or when I want the advice and experience of others I will certainly use the Listserver.
>If we all included our personal email address at the end of our messages, the >person replying could post directly to the originator of the message instead of >to the list.
In our service the email addresses appear at the top of the screen so there is no need to include it in the text of messages.
And of course I would like to know the opinions of others on THIS subject!
Cheers,
Ann
NZ
=========================================================================
Date: Sat, 21 Feb 1998
03:42:14 EST
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From: Marianne Camous
<Camous@AOL.COM>
Subject: Re: Our New Family!
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In a message dated 98-02-20 21:24:58 EST, you write:
<< Marianne,
You mentioned that Evans fingers were joined at the tips and
that he had
them released and has done well. At what age did he have
this done?
Our daughter Nicki, has her two middle fingers the same way.
Our hand
surgeon suggested to release the index finger and pinky and straighten
the thumbs when she is 9 months old (around July). Was
there enough
bone to form two fingers (the middle two)??
>>
Evan had all his fingers released in two procedures. These were delayed
a bit
due to his cranial procedures followed by hydrocephalus/shunt/shunt
infection/replacement...etc His surgeon in Pittsburgh originally planned
to
start soon after 6 months of age when he had his forst cranial release.
As it
turned out he was 11 months old when he had his first hand surgery-
releasing
the index finger and pinky bilaterally with skin grafts from the groin
(a
"bikini" incision). The next finger surgery was planned for 6 weeks
later but
was delayed by the fairly urgent need for another cranial release,
then by an
ear infection. It was done at 15 months when he had his middle fingers
released bilaterally. Two weeks after that we literally left town on
our move
to California. He now has a hand surgon at Stanford who is planning
to give
him 6-12 months before tackling the task of straightening out his thumbs.
From
what I've seen out here, they tend to like to do more procedures to
get all
this accomplished. I'm really glad we did all bilaterally and there
were fewer
surgeries!! Even snuck in a hernia repair with the second one!
Our hand surgeon, Dr Michael Bentz edited a text entitled Pediatric
Plastic
Surgery which has a chapter on the Apert hand. It would be good reading
if you
can find a copy. Published Aug 1997 by Appleton lange. Try for it in
your
local medical library- it costs about $300.
Marianne
=========================================================================
Date: Sat, 21 Feb 1998
00:13:50 -0800
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From: Jose sanchez
<juliuscsr@EARTHLINK.NET>
Organization: none
Subject: Re: Our New Family!
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Hi Jack and Raquel, You mentioned Dr, Wolfe? is that the same as
Dr.Anthony S. Wolfe? if it's the same Doctor he is one of the best
in
his field. Chip Sanchez (so.California)
=========================================================================
Date: Sat, 21 Feb 1998
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From: Jennifer Graham
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Subject: Re: An Update
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Marjorie,
Heres a liitle hoping and praying that Bj continues on whith this road
of
progression! What a fighter he is!! GO BJ!!!
Jenn (Tampa/St.Pete)
=========================================================================
Date: Sat, 21 Feb 1998
12:17:20 EST
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From: Diane Youngblood
<CoH1862@AOL.COM>
Subject: Re: Hands
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Dori,
My daughter is 10 now. When she was 1yr. old
she would become very
frustrated with her hands and try ro pull them apart. We did not have
anyone
we could find until recently to do her hands. She had part of one hand
done
and refuses to do the other. Children can be very cruel to ones who
aren't the
same. We have been very lucky in that she has been accepted just like
any
other child. She has now become interested to know that she is not
the only
one with her condition.
Diane
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Date: Sat, 21 Feb 1998
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From: Janine Krebs
<Yonstein@AOL.COM>
Subject: Re: Some ramblings
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Dear Marjorie:
First, I want to say that I know I feel the same as every other person
on this
list, that I would truly miss your "ramblings" as you put them.
Since the day
I signed on here, your letters have been an inspiration to me.
That is not
just because of BJ, but because of the wonderful person and Mom that
you are.
I would be honored, as I am sure everyone else would be, for you to
continue
here with all of us, no matter what happens.
Please know during these next couple of days that our prayers and thoughts
continue to be with you and your whole family. Also, there are
no
explanations necessary for how you and your family deal with what you
are
going through now or will go through. That is a very personal,
private
matter. You don't owe us any apologies for it.
Please take care of yourself.
Your friend,
Janine Krebs
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Date: Sat, 21 Feb 1998
14:43:52 EST
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From: Janine Krebs
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Subject: Re: Pregnant
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Robyn:
CONGRATULATIONS TO YOU. The date is arriving soon. Hope
you're feeling well.
Congratulations to anyone else who is pregnant.
Janine
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Date: Sat, 21 Feb 1998
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Subject: Re: New Subscribers,England
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Good luck to Jonathan on his hand surgery on Monday. Hope all
goes well.
Janine Krebs
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Date: Sat, 21 Feb 1998
15:31:17 -0600
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From: Judy Amerman
<jamerman@UTI.COM>
Subject: males
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Just out of curiosity; I was wondering if those of you who have apert
sons
if any of you have also encountered hypospadias with your kids.
Nick has this and I just wondered if this is something rather consisant
with apert males. If so please mail me back. Since this is a
very private
thing, you may want to mail me direct.
Nick has seen two different doctors on this and I was not satisfied
with
either.
Judy Amerman
jamerman@uti.com
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Date: Sat, 21 Feb 1998
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From: Resa and Mark
Pace <Copperhd87@AOL.COM>
Subject: Visit with Dr. Salyer
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Last Thursday we had our first appointment with Dr. Salyer in Dallas.
He
seems very nice. What an organization! They have a person
to cover every
little detail. Somehow though, I came away feeling like I had
just been in a
new car showroom. Mark and I both felt like we had been given
a sales pitch
by all 4 people we spoke with.
I really feel like Dr. Salyer and his organization would do a good job
correcting Mitchell's craniosynostosis. However, he wants to
do two
surgeries. Dr. Francel here in OKC says he would do it in one.
Dr. Francel
warned us that Dr. Salyer would want to "string it out" as long as
possible.
Dr. Salyer says that other doctors would do it in one surgery, but
he doesn't
think one is enough to do the job adequately. Who do you believe?
Also, Dr. Salyer is not a provider for Blue Cross/Blue Shield.
He and his
insurance person say they will work with the insurance company, but
the idea I
get is that they only will try to get the insurance company to pay
as much as
possible. What ever they don't agree to pay is still your responsiblity.
Since our PPO plan works on a contract with the doctors, I feel certain
that
they would disallow a large portion of the bill and we would be responsible
for it. I'm talking thousands and thousands of dollars--I'm sure
you are all
familiar with the size of medical bills.
Dr. Salyer's office was very helpful with our motel reservations.
We got a
nice room for a very inexpensive price for that part of Dallas.
All his
office staff seems very well trained.
Dr. Salyer was very interested in our online experiences. We told
him we had
been talking with Blake's family and others. He brought in his
wife to see
what we thought about his web page (www.salyermd.com). Like I
say, his is
quite an organization. It is very much a business.
Overall, I think Dr. Salyer would do a great job. I'm just not
sure that
possibly Dr. Marsh in St. Louis (who is a BC/BS provider) couldn't
do just as
well for a lot less impact on our wallet.
BTW, I've got jury duty next week. I tried to get out of it due
to our
concentration on Mitchell's needs right now, but the judge said no.
Well, that's the scoop.
Resa
=========================================================================
Date: Sat, 21 Feb 1998
17:12:15 EST
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From: Resa and Mark
Pace <Copperhd87@AOL.COM>
Subject: 2 Units of Blood
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When Mitchell had his first surgery, they let Mark donate 2 units blood
at one
sitting. Mark is a regular blood donor and he knows all the technicians
at
the Oklahoma Blood Institute. Since Mark is such a regular donor
of all blood
components, they did not charge us for any of the services, including
testing
both of us for a match. I matched but could not give since I
have had
melanoma. Mark's blood contained several antibodies that they
filtered before
giving it to Mitchell.
We almost went into a panic when we realized
that I could not give blood
for Mitchell. The technician knew he was pushing it, but because
he knew the
situation and knew Mark, he let him do it. We were and are so
grateful.
The Oklahoma Blood Institute is a leader in
blood services due to the
generous gifts of the now deceased Sylvan Goldman, the inventor of
the
shopping cart. We are very fortunate to have the advanced technology
and
services that we do in Oklahoma.
Good luck,
Resa
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Date: Sat, 21 Feb 1998
17:24:01 EST
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From: Resa and Mark
Pace <Copperhd87@AOL.COM>
Subject: Pregnancy late in life
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To the expecting mothers:
Our Mitchell was our third child and was born when I was 39 and Mark
was 40.
Although his medical problems have been an added stress, he has been
much
easier on our life than the other two who are now 10 and 12.
I think we are
much more mature and are more settled and accepting of the changes
that
children bring. My heart certainly goes out to those of you whose
Apert's
children are not your last. Rebecca and Stephen are perfectly
healthy,
typical children. They are very protective of their brother and
seem to be OK
with our devoting so much time to his needs. Stephen is disappointed
that our
only vacation will be a trip to St. Louis to see a doctor, but he'll
get over
it.
Overall, I think we are enjoying Mitchell even more than our first two.
Maybe
it's because there is so much of an age gap. Becca and Stephen
are devoted to
Mitchell and spend a lot of time playing with him and taking care of
him.
It's really been joyful to watch their developing relationship.
My pregnancy with Mitchell was even easier. However, I now think
that his
craniosynostosis may have actually been the factor that did make it
easier.
With the other two I had terrible back pain. I carried Mitchell
much
differently--more out in front--and had no back pain. I wonder
if it was
because of his head being shaped differently. My doctor did notice
that his
head was larger than she would expect and I had an ultrasound at about
8
months. However, the ultrasound showed nothing unusual, and the
pregnancy
proceeded as normal. If the technician had had special training,
do you think
she could have picked up the problem then?
Good luck to you with your pregnancy. I know everything will be just fine.
Resa
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Date: Sat, 21 Feb 1998
17:37:25 EST
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From: Resa and Mark
Pace <Copperhd87@AOL.COM>
Subject: Physical Therapy
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Mitchell has been in physical therapy since
he was 4 months old.
Although he has rarely acted like he hurt and has never cried, he rarely
acts
like he is having a good time either. He usually seems to be
under a
tremendous amount of stress and to be really concentrating on the task
at
hand. He has made good progress. He is 13 1/2 months old
and is getting
ready to stand on his own.
Although he has been with the same therapist
for several months, I am
still very nervous about physical therapy. I'm just so uptight
about his
problems--I worry that today she's going to tell me something else
is wrong.
Sometimes I feel like Mitchell is being treated
like a guinea pig. He
has this unusual problem and the two physical therapists feel like
this is
their big chance to learn all about it. In a way, I don't blame
them, yet
when it's your child, you don't want him to be the source of curiousity.
Last
time, the therapist asked if she could just feel his head so she could
feel
what the surgery and the craniosynostosis had done. I didn't
know how to say
no to this person who we depended on to help Mitchell, but I was really
very
offended. Thank goodness, Mitchell didn't like it either and
wouldn't stay
still for it.
Mitchell wore a helmet for a while and they
treated it with lots of
questions and discussion. If they don't have a "need to know",
I feel they
should just ignore it.
Thanks for listening,
Resa
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Date: Sat, 21 Feb 1998
17:50:10 EST
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From: Resa and Mark
Pace <Copperhd87@AOL.COM>
Subject: The coat fire
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My daughter is in middle school and I absolutely
hate it. The children
are out of control and the teachers and administrators have for the
most part
given up. Last week, some boys destroyed a science project Rebecca
created
and all the teachers would do is say "I'm sorry." Our public
elementary
school was great, but once she started middle school, it was all down
hill.
Last year a boy whacked her on the head with
his elbow on the school bus.
When we reported it, Rebecca is the one that was treated like a criminal.
The
boy was called into the office finally, but he was never made to apologize
and
continued to ride the bus.
My husband said he would be in the principal's
face if this coat fire had
happened to Becca. I don't think I would tolerate it either.
Becca knows how
to stay away from trouble most of the time, so we haven't had to go
that far.
If you don't get satisfaction from the principal, I would just march
myself
down to a school board meeting and at least speak my peace to them.
They
probably won't do anything, but I might put them on warning that if
something
like this happens again, I will sue.
Well, that's my two cents
Resa
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Date: Sat, 21 Feb 1998
15:54:21 -0700
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From: baconsmith <bluenose@TELUSPLANET.NET>
Subject: Re: Physical Therapy
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Hi Resa, you wrote:
>
> Mitchell has been in physical therapy since
he was 4 months old.
>Although he has rarely acted like he hurt and has never cried, he
rarely acts
>like he is having a good time either. He usually seems to be
under a
>tremendous amount of stress and to be really concentrating on the
task at
>hand.
Could be the nature of the child himself -- he's his own person and
has his
own way of approaching things, like an innate personality characteristic
--
that's what came to mind when I read your post.
snip
Last>time, the therapist asked if she could just feel his head
so she could
feel
>what the surgery and the craniosynostosis had done. I didn't
know how to say
>no to this person who we depended on to help Mitchell, but I was really
very
>offended.
REsa, at this point I urge you to be assertive about your feelings.
A
simple and direct reply such as "name, I understand that you must have
questions about Mitchell and his condition. However, I
also need you to
understand that Mitchell has his own feelings and sensitivites, as
do I. I
feel offended when I see someone approaching him as though he is a
specimen
instead of a the little boy that he is. Please focus on this PT while
you
are here. If you would like more infomation about his condition,
perhaps
you or your supervisor could do some library research about it."
or something to that effect.
> Mitchell wore a helmet for a while and they
treated it with lots of
>questions and discussion. If they don't have a "need to know",
I feel they
>should just ignore it.
I don't know much about physical therapy, but I would guess that the
more
they understand about Mitchell's condition (I'm sorry I can't remember
if he
has Apert syndrome) the better they will be able to help him
as the whole
child, knowing any other related issues that he has to face.
Still, I also understand your need for privacy, and it seems that privacy
is
something you might want to address with Mitchell's therapists and
also with
their supervisor. You need to be comfortable with the people
coming into
your home.
I know you didn't ask for advice, but I decided to throw my two cents
worth
on this one anyway.
Pat
mom to the Peach (4 yo, Tessier facial cleft)
email to: bluenose@telusplanet.net
IM: onlypeach
shake and shake the ketchup bottle. none will come and then a lot'll
... unknown
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Date: Sat, 21 Feb 1998
18:00:28 EST
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From: Resa and Mark
Pace <Copperhd87@AOL.COM>
Subject: "The Giver"--middle school literature
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As the parent of a child with a difference,
I found a book my 12 year old
was asked to read for school very offensive. Since some of you
also have
older children, I thought you might like to know about it, because
I think it
is very popular with teachers of children in middle school.
"The Giver" is a science fiction book about
a futuristic society that
disposes of anyone with a difference or problem. The elderly,
the sick, and
those that think for themselves are "released." Most disturbing
to me was the
"release" of and identical twin newborn baby. The baby was executed
because
it would be confusing to have two children just alike. The book
describes the
injection of poision into the babies soft spot and then graphically
describes
the baby's physical reaction to the poison and his subsequent death
and the
disposal of his body.
I continue to be upset by this book that I
read in August. I can't
believe they want sixth and seventh graders to read and discuss this
book for
a grade. I objected, and the teacher changed her lesson plan.
Be alert to
your child's being asked to read this book. Be sure you read
it first and you
decide if you think it's appropriate for your family.
Resa
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Date: Sat, 21 Feb 1998
17:46:15 -0800
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From: Lark Jarvis <lark@INVOLVED.COM>
Subject: Re: "The Giver"--middle school
literature
In-Reply-To: <6745965a.34ef5c8e@aol.com>
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At 06:00 PM 2/21/98 EST, Resa wrote:
>
> "The Giver" is a science fiction book about
a futuristic society that
>disposes of anyone with a difference or problem. The elderly,
the sick, and
>those that think for themselves are "released."
Hmmmm--interesting that the author's take on non-comformity is that
inclusive--not everyone "gets it" that there is a connection between
discrimination because of physical difference and because of non-conformist
"ideas." They are intricately related, though . . .
As a person with a facial difference (bilateral cleft lip/palate), my
take
is that the way this book is **taught** is what matters more than anything.
It sounds, IMO, as if it's the kind of book that could really
serve as a
vehicle for deep discussion about difference (in the hands of a competent
teacher . . . In the hands of an incompetent, insensitive teacher,
well,
admittedly, things don't look good . . . . social disaster for anyone
different in *any* way . . . Sounds as if there are some REALLY deep
themes
in the book that anyone who tackles teaching it should be prepared
for . .
. including taking inventory of their OWN prejudices around difference
. .
. )
Reminds me of an experience that I and many of the adults I know with
clefts have had--Most of us remember having cringed and wanted to crawl
under our chairs in shame during discussion of the classic, _Huck Finn_
in
high school literature classes. For those who don't remember, one of
the
many characters that Huck tries to swindle is a young girl with cleft
(in
keeping with the time period, Huck refers to her as "the Harelip.")
The trouble in my English class, in retrospect, was not at all the book,
but the fact that *my* cleft was not dealt with openly and without
shame--in any part of my life--not at home or at school. Had
my family
been more open about my cleft, and willing to discuss the heavy-duty
ideas
that having *any* difference naturally brings up, I feel fairly certain
that my high school English teacher could've handled the discussion
sensitively, and my life might've been slightly easier because of it.
I
think, though, that she knew better than to tackle the subject, though,
because I was incapable of talking about my cleft at all without shame
. .
. I probably wouldn't have been ready . . .
Years later, when I re-read the book, I was struck by the educational
opportunity that was missed by avoiding discussion of "the Harelip's"
character. In reality, _Huck Finn's_ actual characterization
of "the
Harelip" was WAY ahead of its time--the character was sharp,
an excellent
judge of character, and her ability to read people's intentions/true
characters almost blew Huck's cover. She saw Huck for the sham that
he was,
while her more "ladylike" sisters fell for his scam hook line and sinker
.
. . (Many of the fellow adults with cleft who I know, BTW, will attest
that
the ability to read character like that may be a survival skill that
some
of us gain of necessity, but that later on in our lives serves
as
attributes . . . )
In any case, the real idea that should've been given a chance to settle
into the brains of my high school classmates was--In contrast to the
stereotypes about people with clefts during the timeperiod Twain was
writing about, Twain created a character that I think is a credit to
cleft-affected people then and now--she was one sharp cookie, despite
Huck's attempt to categorize her, to label her . . . The stereotype
of the
day, though, was that people with clefts were slow-witted and simple.
Joanna ("the Harelip") was nothing of the sort! :)
In other words, _Huck Finn's_ portrayal of people with clefts was every
bit
as revolutionary IN ITS DAY as it was with regard to Black people
(despite
use of the "H-word" and the "N-word") The book succeeded in both
humanizing Jim and allowing Joanna a keen intellect. Amazing,
for its day.
Non-PC language, but you can't miss the real idea . . .
All that to say, I don't think that censoring literature that
provokes
discussion of "big" issues is necessarily the best way to go--Finding
teachers competent enough to sensitively address those issues is.
Just my .02,
Lark Jarvis, LMT
Portland, OR
(who'll be looking for _The Giver_ next trip to the bookstore--sounds
very
interesting!)
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Date: Sat, 21 Feb 1998
20:46:38 -0500
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From: Colleen Jones
<coljones@PTDPROLOG.NET>
Subject: pregant
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Congratulations to all who are pregnant. We just had our third
child,
Jessica Emily Jones on Jan. 27. Needless to say we were also
very anxious
to see if she would be healthy after having Jacob (19 months old now)
with
Apert syndrome. We did not have any special prenatal testing
done except
for a detailed ultrasound. I was never real worried
about another child
with Aperts just concerned about how I would handle two little ones
and a 4
year old. Still trying to figure that out!! I think the
doctors and
nurses that delivered Jessica thought I was a little nuts when I started
asking if she had fused sutures or any craniofacial problems.
They kept
saying she looked good and she is a cutie. Still thinking about
trying to
have a PA get together sometime. Jim and Kelly when you get a
chance give
me a call (717)837-1752 and we can get the kids together to play.
I know
Julianne would enjoy playing with your 4 year old too. Hope everyone
does
well with surgeries and pregnancies. We have a bit of a break,
Jacob's
palate surgery was cancelled in Feb due to URI and not rescheduled
until
April. Will keep you all posted.
=========================================================================
Date: Sat, 21 Feb 1998
21:17:45 EST
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From: AOL User <MHTeach102@AOL.COM>
Subject: An Update
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Hi everyone
I wanted to drop a note talking about what the doctors said today. Well
as
everyone knows we had a special teams of doctors flown in from Califironia,
They spent the day examing BJ and reveiwing his chart and talking to
his
doctors and nurses. We finally sat down to talk with them tonight.
I guess
David and I were looking for a miracle. Well they said that they were
positive
that BJ had received the best care available and that all options had
been
pursued. They even told us that if BJ had been at their hospital (Children's
Hospital of Oakland) they would have never even attempted several of
the
surgeries that have kept him alive this long. They said that we could
of
course seek another opionion and even have BJ flown to another hospital.
But
they said they doubt if he could survive the flight.
We thanked the doctors for coming and then spent several hours talking
to BJ's
doctors from here, we also sat down with the members of the CF team
and his
pediatrician. It was a bit intimidating their were 30 doctors Me and
David. We
talked about all the procedures that BJ has had performed since this
crises
began (21 operations) they also detailed all the possible procedures
they
could attempt. They then went into all the criseses that BJ has now,
respiratory and kidney failure, being the main ones, and they
also gave us
lots of options for pain management.
The doctors have told us that they will pursue whatever option that
David and
I wish. But they need us to make a decision and inform them tommorow
at 3. We
went home for the night to think and talk this over. David and I haven't
even
tried to talk about it yet, we are waiting till we get the kids to
bed. I keep
putting this off hoping it will get easier the longer we put this off.
I am
tryng hard to be objective as to what the doctors said, but this is
a decision
that rests more with my heart than my mind.
Well I will need to go I need to try and reach the rest of my and David's
family and give them the info. Then David and I will have to sit down
and
start talking, Guess we won't be sleeping much tonight. I am not sure
when I
will be able to give our next report so bear with me.
Marj Harmon
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Date: Sat, 21 Feb 1998
22:47:59 -0600
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From: Chad & Denise
Graham <cgraham@INFOAVE.NET>
Subject: welcome
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I would just like to welcome everyone new to the list! This is
coming from
the other Graham's in Tennessee!ha...ha
Diane,
Glad to see that you and
Malorie are on the list. I hope we can
get together soon! Call me sometime.
Let's all continue our prayers for Marjorie, David and all of their
children. They are a special family and have been such a blessing
in my
life.
Denise Graham
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Date: Sun, 22 Feb 1998
18:05:29 +1300
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From: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: Joints
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Kia Ora
There was an interview on the radio today with a lady by the name of Gail Norton from Advanced Tissue Sciences in the USA during which she stated something about "growing joints" - of course my ears pricked up. Their website is www.advancedtissue.com - one of these annoying ones where the text continues outside the range of my computer screen (which involves shifting the "page" left and right to read a line) and I can't shift further down the icons on the side so don't know if I have missed something. And of course they don't give an email address where I could ask about it.
Does anyone know anything further about this? I know the subject of joint transplants has been raised previously, but I don't recall anyone talking about "growing joints".
Ann
NZ