Hi everybody,
Tyler started to talk today. He said "mama,byby and baba"
all at once. He
just started talking . I guess he just figered out he could. Of course
dada
jealous because it wasen't dada first but were working on it.
We going to
Dallas tomarrow for a cheak up on Tyler's hands. Their doing ok,still
lots of
granulation tissue, and I coulden't keep his splint's on. They have
two
different kinds. Would any of you mind telling us what kind of splint's
you
used and how you kept them on??? We wish everyone luck on there up
coming
surgery's. Have a great day! The Jobe's
=========================================================================
Date: Mon, 14 Sep 1998
23:05:35 -0700
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: Ramblings:
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Dori, good luck and we will be praying for seth's surgery to be successful
and a speedy recovery too.
Robyn J.
=========================================================================
Date: Tue, 15 Sep 1998
07:04:41 EDT
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Jenngram@AOL.COM
Subject: Re: Pictures and taxes
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
Andrea,
Hopefully come tax time you'll get a nice refund check, for the $30.00
they
took!!!
Jenn(TAmpa/St. Pete)
=========================================================================
Date: Tue, 15 Sep 1998
07:23:02 EDT
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Jenngram@AOL.COM
Subject: Re: update
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
Jordans splints are held on w/ velcro...from top to bottom.....and the
splint
encompasses his entire arm. Although, by the end of the first week,
you can
hear him at night in his bed desperatly trying to tear off the thing.
Adn the
more fingers he gets...the better he becomes.
I tried to pull out an old one the day before surgery, to put it on
him so he
would be familiar with it and it wouldn't be such a shock...Whelllllll,
no
need.....he saw it, heard the velcro....and proceded to take off down
the hall
faster than the speed of light. Guess theres our test of object
permanance!!!!!
But he came out of surgery fine, so far we have good blood supply to
the index
finger, and he has slept a lot better than I have. Hopefully this will
continue.....
Thanks for the thoughts and prayers
Jenn(Tampa/St. Pete)
=========================================================================
Date: Tue, 15 Sep 1998
16:21:28 -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: jamerman@UTI.COM
Subject: Seth
MIME-Version: 1.0
Content-Type: text/plain; charset=ISO-8859-1
Content-Transfer-Encoding: 7bit
Just a note to let you know that Dori called a little while ago.
Seth is out of surgery and so far, so good. He will probably be in the
hospital until Friday.
Judy
=========================================================================
Date: Tue, 15 Sep 1998
19:28:52 EDT
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Yonstein@AOL.COM
Subject: Re: Sammy, Seth & Jordan
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
I just wanted to say congratulations to all three handsome guys for
successful
surgeries. It's such a relief to know that they are all doing
well. Hope the
recovery is smooth for all and that Seth will be home on Friday.
Hope all is well with everyone.
Best wishes,
Janine
=========================================================================
Date: Tue, 15 Sep 1998
21:03:57 -0400
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Steve & Stacy
<sshb@EROLS.COM>
Subject: Re: Zoey and Walking
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
Christina,
As far as walking Brooke is going to be 21 months and is far from walking.
She
is still not doing much weight bearing on her legs. She may hold
the record for
walking. Teeth wise, she has 2 up top front, 3 on the bottom
front with the 4th
ready to pop any time, and 1 molar in up top.
Stacy
Nodrmat26@AOL.COM wrote:
> Hello All!
>
> Zoey's Mom here and was just wondering if Zoey holds the record on
taking the
> longest to walk and to get teeth. She's 20 months old this
month and hasn't
> so much as taken a step on her own. Not one single solitary
tooth, either.
> I'm not saying I'm in any way dissapointed in her, just kinda curious
to see
> if she holds any records! :o)
>
> Christina
> In rainy (finally) San ANtonio
=========================================================================
Date: Tue, 15 Sep 1998
22:22:38 EDT
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: "(Marianne Camous)"
<Camous@AOL.COM>
Subject: Re: update
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
Jenn-
In these parts they call those velcro splints "No-No's". A name Jordan
would
agree with no doubt!!
;) Marianne
=========================================================================
Date: Wed, 16 Sep 1998
06:10:31 -0700
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: Ramblings:
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Jenn,
Sheez, has it been a year already?!!! Happy birthday Jordan and
we wish
you a speedy recovery on your surgery.
hugs, Robyn J.
=========================================================================
Date: Wed, 16 Sep 1998
18:32:24 -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: jamerman@UTI.COM
Subject: Seth
MIME-Version: 1.0
Content-Type: text/plain; charset=ISO-8859-1
Content-Transfer-Encoding: 7bit
I spoke to Dori a little while ago and Seth is still doing good. He
is even
starting to open his eyes.She did say that they may have to stay a
little
longer than Friday though. the docs are now saying five days.
Hope everyone else is doing good too.
Judy
=========================================================================
Date: Wed, 16 Sep 1998
21:17:53 -0400
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: foster <foster@ICONTECH.COM>
Subject: Head bumping and more
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
First I want to send our best wishes for Seth,Sammy and Jordan and also
for
EvaJesse. Sorry I didn't do so earlier but I am still way behind on
reading.
Well, Billy is all better from his virus and they have scheduled his
surgery
to work on his pointers on Oct 8th.
On the other hand Billy spent last Sunday night in our local hospital
with a
slight concussion after falling off of the bottom step in our hallway.
He is
doing ok now but, he had to go down to his neurologist in Hershey today
for
a follow up and for the doctor to see the CT scan. The fall did not
do any
bad damage but for the first time the doctor mentioned that he may
need a
shunt. He really upset us because he said he will do another CT in
Jan. and
he will know better than. The ventricles have always been a little
large and
have not changed. He said they should be getting smaller but have not.
Then
he said he is not worried because if this was causing a problem he
would
have stiff legs and would not be so active. Can anyone tell me what
the heck
that is suppose to mean? Any way tomorrow I will be checking out everything
I can find on this subject and then I will be better prepared for such
discusions. I hate to say that I am not up on this shunt stuff because
it
was never mentioned to us before. The shunt is not a problem to me
I just
want to be sure it is needed.
Hope everyone else is well and all of the kids are doing well in school.
Karen(PA)
=========================================================================
Date: Wed, 16 Sep 1998
22:12:47 -0700
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: Robin MacDonald
<macdonal@GOLDEN.NET>
Subject: life's embarressing moments...
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
Thought I would share this gem that happened to our daughter this
evening. A local pool had recently installed a ramp for pool access.
This
ramp is suitable for wheelchairs or children who prefer to walk into
a
pool.
At this event this evening were the mayor, local business people who
were instrumental in raising funds etc. I had arranged that Lindsay
would be the first person who would walk down the ramp after the ribbon
cutting ceremony. You see I had convinced the manager of the pool that
Lindsay loves this type of attention...and she has great difficulty
with
pool stairs and the ramp is ideal for her. I had also told him that
his
ceremony would be much more moving if someone actually used the ramp
after the ribbon cutting ceremony.
She is six, and loves the water, but as of yet cannot swim.
(DO YOU SEE WHERE THIS IS GOING?)
So Lindsay is really patient waiting through the speeches etc. and
finally she heads down the ramp...and darn if the pool isn't too deep
for her at the end of the ramp.
I was in my swim suit and shirt on deck, standing proudly as Lindsay
took the "first trip on the ramp". Anyways...it wasn't too long before
she was over her head. In I went.... shirt and all and quickly picked
her up and put her back on the ramp! Oh my god!
Lindsay was fine and was soon playing happily with a flutter board..and
I was red-faced and trying to explain to everyone who would listen
that
I thought the depth at the end of the ramp would be ok for her.
Anyways....I won't soon forget this little moment!
Thought I would unload this cute? story for everyone's pleasure!
=========================================================================
Date: Wed, 16 Sep 1998
22:47:41 -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: Laurie Bailey
<jkb@ELPASO.NET>
Subject: Re: Seth
MIME-Version: 1.0
Content-Type: text/plain; charset=ISO-8859-1
Content-Transfer-Encoding: 7bit
Hey Judy,
Thanks for the update. Glad to hear he's doing well. Godspeed for a
fast
recovery.
Laurie Bailey
jkb@elpaso.net
----------
> From: jamerman@UTI.COM
> To: APERT@LISTSERV.AOL.COM
> Subject: Seth
> Date: Wednesday, September 16, 1998 6:32 PM
>
> I spoke to Dori a little while ago and Seth is still doing good.
He is
even
> starting to open his eyes.She did say that they may have to stay
a little
> longer than Friday though. the docs are now saying five days.
> Hope everyone else is doing good too.
>
> Judy
=========================================================================
Date: Wed, 16 Sep 1998
17:37:19 -0700
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: "Christine L.
Clark" <apertnet@IX.NETCOM.COM>
Organization: APERT SUPPORT & INFORMATION NETWORK
Subject: Update
Comments: To: TStark@pmrp.com, mto@itsa.ucsf.edu, lori@tibco.com,
105574.3156@compuserve.com,
chanan8@JUNO.COM, jrstill@sonic.net,
faces@mindspring.com,
cranio-serve@pa.mother.com,
DNKM90A@prodigy.com,
anncoombs@JUNO.COM
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
Hello to everyone,
Many people have been e-mailing to see how I have been doing so I am
sending one big update to everyone.
I have finished three sessions of chemotherapy, each involving 5 days
of
nausea and heachaches. Now for the whopper.
I will be having a stem cell transplant next week. It is a bone
marrow
transplant except that my own cells will be given back to me instead
of
from a donor. I had my stem cells harvested a couple of weeks
ago and
now they are frozen. On September 22nd I will be admitted to
the
hospital at the University of San Francisco (UCSF) for 3 - 4 weeks.
The
first 4 days will be large doses of chemotherapy to kill off cells
in the
bone marrow, then after two days of flushing that out of my system
they
will thaw out my stem cells and give them back to me along with blood
transfusions and growth hormone injections to bring my cell counts
back
to normal. The second week will be hard because the intestinal
tract is
basically fried from the chemo and the possibility of mouth sores,
etc.
so it will be difficult, if impossible, to eat or drink requiring IV
fluids and pain meds. The weakness hangs on quite awhile, I am
told, and
may take another month after release from the hospital to get back
my
strength. After that, I have 6 1/2 weeks of radiation and reconstructive
surgery to look forward to.
For those of you on the Apert listserv reading this, it will be quite
a
bit longer than I had expected before I will get a newsletter out but
I
will return!! Now that I have FINALLY obtained a nonprofit status
I want
to get going on lots of plans for the organization. Just have
to be
patient.
I also want to thank everyone who has sent e-mails, cards and flowers
to
me since I first started this fight against breast cancer. It
has really
helped to brighten my days. I only wish I had the strength to
respond to
each and every one of you but I simply can't.
I am keeping my spirits up and trying to go on as usual. We are
fortunate that our niece, Colleen, has moved out here from Massachusetts
for 4 months to help us with Michelle and Shannon while I am going
through all of these treatments. The girls seem to be doing well
but it
will be extremely hard to be away from them for so long (and being
at a
hospital that is two hours away).
I will have my lap top with me at the hospital so I will try to keep
up
on the e-mails and I will try to keep you all informed.
All my best to all of you,
Christine
=========================================================================
Date: Thu, 17 Sep 1998
12:07:59 -0400
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: George Starr
<daystar@IGLOU.COM>
Subject: Re: Rachel Fletcher:
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
Content-Transfer-Encoding: 7bit
I don't get time to read all the messages on here but this was one I
had to
respond to. My Wife Rosemarie was thinking about getting a the midface
advancement as an adult to clear up some breathing/cronic cold problems.
She
was concerned if I would still love her if she looked different. My
response
was simply to tell her I fell in love with the person on the inside.
The
doctors did say it takes time to get to know the new self in the mirror,
which suprised me a little.
Hope all went well for Seth.
My wife decided the risk was too much as an adult for the possiable
benifit
and the doctors told her it would maybe help a little. The risks were
just
those of standard suguries.
Later
George
-----Original Message-----
From: D. Jefferson <djeff@MIDWEST.NET>
To: APERT@LISTSERV.AOL.COM <APERT@LISTSERV.AOL.COM>
Date: Sunday, August 30, 1998 12:55 AM
Subject: Re: Rachel Fletcher:
>Rachel:
>
>Thank you so much for the before and after pictures. They came
at just the
>right time. Seth cried himself to sleep last night because he
doesn't want
>to look different after the surgery on the 15th. He is afraid
that his
>friends won't know him. His crying broke my heart and made me
feel weak
>and unsure. Your pictures gave me back my strength and resolve.
Thank
>you.
>
>Warmly, Dori
>Dori A. Jefferson
>djeff@midwest.net
>
=========================================================================
Date: Thu, 17 Sep 1998
09:49:53 -0700
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: "Pulido, Laura"
<PulidoL@OR.CSMC.EDU>
Subject: Hi Everyone and Hello George
MIME-Version: 1.0
Content-Type: text/plain
Hello everybody. Hope everyone is well and good luck on your surgeries.
I usually just lurk - but read the emails every day.
Hi George,
Hadn't heard from you in a while. I'm glad you posted your email.
Although I don't know you personally, I admire you just for being
Rosemarie's husband. This is one of my concerns with Martha (2
1/2
years old w/Apert). I know she's only a baby but every now and
then I
wonder - Will she ever find a boyfriend? If she does have
a boyfriend
- He better NOT EVEN THINK ABOUT HURTING HER!! Will she ever
find a
husband? Anyway, somedays I can't get questions like these out
of my
head. Thanks for your note regarding Rosemarie's choice not to
have the
mid-face advancement.
Laura
Los Angeles, CA
=========================================================================
Date: Thu, 17 Sep 1998
16:59:22 EDT
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Firefli007@AOL.COM
Subject: Re: Update
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
CHRISTINE>>
HI THIS IS JENNY FROM GEORGIA... WAS SO SORRY TO HEAR ABOUT ALL THAT
YOU HAVE
BEEN THROUGH.
My aunt - Mom's sister was diagnosed with Multiple Myloma back in 1996..
She
had the same treatment that you are about to undertake.
She was out of
commission for about six months total, but has made a strong and consistent
recovery since., She is even now back at work full time. She
is a walking
miracle. Please know that you are in our thoughts and prayers.
Congratulations to Seth and everyone else ...
Thank you George for your words and for loving somebody for who they
are!!!
Rosemarie - beautiful and perfect just the way she is!!
In my eyes we are alllllll perfect 10's !
I know i have been terribly neglectful - re the great picture
exchange -mine
are coming....if i could just sit down and address the envelopes!!!
Jenny
=========================================================================
Date: Thu, 17 Sep 1998
17:37:10 EDT
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: BBarn60368@AOL.COM
Subject: Re: Update
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
Christine,
God Bless You. You are in my prayers.
Alice in Central Florida
=========================================================================
Date: Thu, 17 Sep 1998
19:32:42 -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: Chad & Denise
Graham <cgraham@INFOAVE.NET>
Subject: UPDATE
MIME-version: 1.0
Content-type: text/plain; charset="us-ascii"
Christine,
I am so glad to hear from
you! I will be sending prayers and happy
thoughts your way!! You are a wonderful lady with a lot of spunk.
I guess
thats where your girls get it from.
Glad to hear everyones surgeries
turned out good! We will be
having our 2nd cranial on Nov. 5. I have come down with a severe
case of
Mononucleosis better known as MONO. I had it when I was 14, but
boy did it
get me this time. I started out with a 103.5 fever for 12 hours
that would
not go down no matter what the doctors gave me. It went down
to 100.9 for
the next 3 days. I felt like I had been in a car accident because
I was so
soar all over. On the second day, my throught turned into hundreds
of
ulcers and it was like swallowing eggshells. The hospital pretty
much
tried to keep me sedated with Demerol for a couple of days until I
could
tolerate swallowing again. I am on house arrest, by my husband
and doctors
orders, for the next 3 weeks. I could use the rest, but as most
of you
know it is hard to do when you know what all needs to get done.
That is enough of my pitty
party!! I hope everyone is doing well
and I wish everyone the best! God Bless!
Denise Graham
=========================================================================
Date: Thu, 17 Sep 1998
23:24:16 -0700
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: Update
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Christine, Thanks for letting us know how you are doing. We will
be
sending prayers your way. Be strong, and good luck with everything
coming
up.
Big hugs to you, Robyn J
At 05:37 PM 9/16/98 -0700, you wrote:
>Hello to everyone,
>
>Many people have been e-mailing to see how I have been doing so I
am
>sending one big update to everyone.
>
>I have finished three sessions of chemotherapy, each involving 5 days
of
>nausea and heachaches. Now for the whopper.
>
>I will be having a stem cell transplant next week. It is a bone
marrow
>transplant except that my own cells will be given back to me instead
of
>from a donor. I had my stem cells harvested a couple of weeks
ago and
>now they are frozen. On September 22nd I will be admitted to
the
>hospital at the University of San Francisco (UCSF) for 3 - 4 weeks.
The
>first 4 days will be large doses of chemotherapy to kill off cells
in the
>bone marrow, then after two days of flushing that out of my system
they
>will thaw out my stem cells and give them back to me along with blood
>transfusions and growth hormone injections to bring my cell counts
back
>to normal. The second week will be hard because the intestinal
tract is
>basically fried from the chemo and the possibility of mouth sores,
etc.
>so it will be difficult, if impossible, to eat or drink requiring
IV
>fluids and pain meds. The weakness hangs on quite awhile, I
am told, and
>may take another month after release from the hospital to get back
my
>strength. After that, I have 6 1/2 weeks of radiation and reconstructive
>surgery to look forward to.
>
>For those of you on the Apert listserv reading this, it will be quite
a
>bit longer than I had expected before I will get a newsletter out
but I
>will return!! Now that I have FINALLY obtained a nonprofit status
I want
>to get going on lots of plans for the organization. Just have
to be
>patient.
>
>I also want to thank everyone who has sent e-mails, cards and flowers
to
>me since I first started this fight against breast cancer. It
has really
>helped to brighten my days. I only wish I had the strength to
respond to
>each and every one of you but I simply can't.
>
>I am keeping my spirits up and trying to go on as usual. We
are
>fortunate that our niece, Colleen, has moved out here from Massachusetts
>for 4 months to help us with Michelle and Shannon while I am going
>through all of these treatments. The girls seem to be doing
well but it
>will be extremely hard to be away from them for so long (and being
at a
>hospital that is two hours away).
>
>I will have my lap top with me at the hospital so I will try to keep
up
>on the e-mails and I will try to keep you all informed.
>
>All my best to all of you,
>
>Christine
>
>
=========================================================================
Date: Sat, 19 Sep 1998
11:56:55 -0400
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Ryan Bradley
<Bradleys_r@COMPUSERVE.COM>
Subject: Update
MIME-Version: 1.0
Content-Type: text/plain; charset=ISO-8859-1
Content-Transfer-Encoding: 8bit
Dear Christine,
We would keep you in our prayers during this next month.
The Bradley's
=========================================================================
Date: Sat, 19 Sep 1998
11:12:59 -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: Chad & Denise
Graham <cgraham@INFOAVE.NET>
Subject: The movie:SIMON BIRCH
MIME-version: 1.0
Content-type: text/plain; charset="us-ascii"
I went to see the movie "SIMON
BIRCH" last night with my husband.
It is a (PG) rated movie. It was wonderful!! I encourage
all of you to go
see it. Carry a box of tissue with you though. It was precious
and makes
a statement about children who are different. It made me have
even more
faith in my little guy and about his very special purpose hear on this
earth. Beware, the parents of this little guy in the movie are
not loving
parents, but Simon moves past that and is a little hero! My husband
and I
cried and cried, but it brought us closer and gave us a feeling of
connection that was even closer that before(and my husband is not a
crier).
Anyway, "that is all I have to say about that."ha..ha..
Hope all is well with everyone!
Denise Graham
=========================================================================
Date: Sun, 20 Sep 1998
16:05:14 -0400
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: foster <foster@ICONTECH.COM>
Subject: Update
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Christine,
Our prayers will be with you each and everyday while you go through
this
treatment. Hope everyday gets easier and you are well soon.
Karen&Bill (PA)
=========================================================================
Date: Sun, 20 Sep 1998
22:34:34 -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: tcgraves <tcgraves@BELLSOUTH.NET>
Subject: Shriners tomorrow
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
Content-Transfer-Encoding: 7bit
We are leaving to take Nicholas to Shriners in South Carolina Monday
morning
to schedule a hand surgery, to straighten his 2nd finger on the right
hand
that is growing side ways to the left.. we have seen them once and
they took
the xrays, so will just recheck and get things scheduled.. hope everyone
is
doing good, and glad to hear the recent surgeries have gone well.
Denise, I
will definitly have to check out that movie ! Wish a good week to all
of
you, and will write again when we return on Wednesday.
Carol Graves
=========================================================================
Date: Mon, 21 Sep 1998
21:05:00 EDT
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: GSieb91515@AOL.COM
Subject: Re: Update
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
Christine-
Thank you so much for the update. You are an amazing woman with
great
strength. I am so sorry you are having to endure all of this.
The stem cell
transplant sounds really interesting. It's is incredible to me
the technology
that is available today. We will keep you in our prayers and
hope that you
are feeling much better soon.
Much love,
Brenda, George, Melissa and Jonathan Siebert
=========================================================================
Date: Mon, 21 Sep 1998
21:14:27 EDT
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: GSieb91515@AOL.COM
Subject: Re: Seth
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
Dori-
So glad to hear that Seth is recovering well from surgery and hope that
he is
home now. Best wishes for a speedy recovery and back to those
great school
mates of his.
Brenda
Houston
=========================================================================
Date: Mon, 21 Sep 1998
22:31:10 EDT
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: JReyesmich@AOL.COM
Subject: Medical insurance for Apert
kids.
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
Hi everybody
here Claudia, sorry that I don't write often, even though I read the
listserv
everyday. I'm always praying for all you.
I just have a question, how do you know or maybe don't, I'm still trying
to
bring my sister Vivi to USA to give her the surgeries that she needs,
I have
contacted a surgeon at UCSF and he told me that I could apply for a
medical
insurance and declare my sister as a dependent.
The point is I don't know exactly how the insurance's work, if
I can apply
for an insurance even if she is no my daughter, so just my sister.
Also if
this is going to cost me a lot. then which status make me qualified??
If you
have the phone number of some insurance here in San Francisco or California,
it will be great for me.
If you can help me with any information, please e-mail me.
Thanks
Claudia
JReyesmich@aol.com