I had ultrasounds - in fact, I had 5 of them! I had placenta previa
at 5
months and because of this, they gave me an ultrasound every month,
including the day of birth! The first ultrasound I saw nothing
wrong. In
my later months, they would check the position of the placenta, take
a
picture of Jake's face, and hand it to me. When I was about 7
months
pregnant, I noticed the picture they'd given me of his face looked
a little
odd. It was a profile shot of him, and I could see the regression
in the
middle part of the face. Even though it looked a little odd,
I just thought
the ultrasound was skewed. I never brought it to my doctor's
attention. I
look back at those pictures, and now see clear evidence of Apert's
in almost
every later ultrasound picture they took. The large head is the
giveaway!
In fact, the profile ultrasound picture is identical to one we took
of him
as a newborn! They never caught it, and these were ALL Level
1 ultrasounds.
Now if I questioned it, wouldn't you think a trained radiologist would
also?
How closely do they really look at these things? Two weeks after
Jake was
born, I brought the ultrasound pictures in with his IDENTICAL newborn
pictures, and asked my OB/GYN why this wasn't caught by the radiologist.
He
said they had a meeting about us after Jake's birth. It was determined
that
everything was done by the book and that all measurements (early on)
were
fine. However, I indicated that they never did any measuring
after the
initial exam, so of course they wouldn't have found anything.
I also
remember something about excess amniotic fluid...Hmmm.....
We've asked ourselves time and again if we would've wanted to know before
his birth, and we always seem to come back to "YES." We wouldn't
have
changed anything, but at least we would've had the chance to find the
best
surgeons, line them up, and have them (and us) prepared. We love
our son,
no matter what....we just want the very best for him, like we all do.
Liz Niemi and Family
-----Original Message-----
From: Copperhd87@AOL.COM
[SMTP:Copperhd87@AOL.COM]
Sent: Monday,
June 14, 1999 10:42 PM
To:
APERT@LISTSERV.AOL.COM
Subject:
Re: prenatal diagnosis of fused sutures
My son Mitchell was born
with sagittal craniosynostosis, not Aperts.
I had
an ultrasound at about 7
months because the doctor thought I was
measuring
too big. The ultrasound
said everything was just fine. NOT! So
much for
ultrasound diagnosing fused
sutures.
Resa
=========================================================================
Date: Tue, 15 Jun 1999
01:10:23 -0400
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: Greg and Sherry
Roehl <gnsroehl@FLASH.NET>
Subject: Re: prenatal diagnosis of fused
sutures
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
Liz,
Now that you mention it, they did say that my ultrasounds showed
that the head
was large. Where Kieran's legs & arms were measuring at approx.
36 weeks, his
skull was measuring at 40. We talked a bit about it, but no one
seemed too
concerned. My doc was just worried about the fluid.
I've thought a lot about whether I would have wanted to know before
Kieran was
born that he has Apert's. I came to the opposite conclusion;
I don't think I
would have preferred to know. It wouldn't have changed anything,
as you said.
I was already concerned about the excess fluid and confined to bed
rest. Had I
known I would have spent the remainder of my pregnancy worrying and
anxious.
That wouldn't have helped Kieran any. Although you do bring up
a good point
about doctors, etc... Funny how everyone reacts differently to
similar
circumstances.
Sherry Roehl - mom to Kieran-3 mos w/Apert's, Laney-4 w/CVS & Bailey-7
"Niemi, Liz" wrote:
> I had ultrasounds - in fact, I had 5 of them! I had placenta
previa at 5
> months and because of this, they gave me an ultrasound every month,
> including the day of birth! The first ultrasound I saw nothing
wrong. In
> my later months, they would check the position of the placenta, take
a
> picture of Jake's face, and hand it to me. When I was about
7 months
> pregnant, I noticed the picture they'd given me of his face looked
a little
> odd. It was a profile shot of him, and I could see the regression
in the
> middle part of the face. Even though it looked a little odd,
I just thought
> the ultrasound was skewed. I never brought it to my doctor's
attention. I
> look back at those pictures, and now see clear evidence of Apert's
in almost
> every later ultrasound picture they took. The large head is
the giveaway!
> In fact, the profile ultrasound picture is identical to one we took
of him
> as a newborn! They never caught it, and these were ALL Level
1 ultrasounds.
> Now if I questioned it, wouldn't you think a trained radiologist
would also?
> How closely do they really look at these things? Two weeks
after Jake was
> born, I brought the ultrasound pictures in with his IDENTICAL newborn
> pictures, and asked my OB/GYN why this wasn't caught by the radiologist.
He
> said they had a meeting about us after Jake's birth. It was
determined that
> everything was done by the book and that all measurements (early
on) were
> fine. However, I indicated that they never did any measuring
after the
> initial exam, so of course they wouldn't have found anything.
I also
> remember something about excess amniotic fluid...Hmmm.....
>
> We've asked ourselves time and again if we would've wanted to know
before
> his birth, and we always seem to come back to "YES." We wouldn't
have
> changed anything, but at least we would've had the chance to find
the best
> surgeons, line them up, and have them (and us) prepared. We
love our son,
> no matter what....we just want the very best for him, like we all
do.
>
> Liz Niemi and Family
>
> -----Original Message-----
> From:
Copperhd87@AOL.COM [SMTP:Copperhd87@AOL.COM]
> Sent:
Monday, June 14, 1999 10:42 PM
> To:
APERT@LISTSERV.AOL.COM
> Subject:
Re: prenatal diagnosis of fused sutures
>
> My son Mitchell was
born with sagittal craniosynostosis, not Aperts.
> I had
> an ultrasound at
about 7 months because the doctor thought I was
> measuring
> too big. The
ultrasound said everything was just fine. NOT! So
> much for
> ultrasound diagnosing
fused sutures.
> Resa
=========================================================================
Date: Tue, 15 Jun 1999
01:41:07 -0400
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: Greg and Sherry
Roehl <gnsroehl@FLASH.NET>
Subject: Craniofacial Teams
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
Me again! I warned you that I'd have a lot of questions. :-)
This time I'm wondering if everyone works with a craniofacial clinic.
Our HMO is trying to reassure me that Kieran will get the care he needs
through their system, even though they don't have a craniofacial
clinic. This is contrary to everything I've read and what I've
heard
from Associations that deal with craniofacial anomalies. It also
goes
against my gut instinct. Unfortunately, there's no way we could
possibly afford to pay for everything ourselves, and our current
insurance won't cover one.
We have 2nd and 3rd opinions scheduled for this week at clinics.
When I
spoke to managed care today, they agreed to pay for one of the plastic
surgery opinions, but no more. When I talked about the neurosurgeon,
they suggested I see another one in their system. I declined,
and will
pay out of pocket for the remaining visits to the neurosurgeon and
plastic surgeons affiliated with the clinics. The managed care
worker
went so far as to suggest that I'll just confuse myself with all of
these opinions with all these different doctors. While that may
be true
to a degree, I feel I need to get all the information that I can before
entrusting Kieran to anyone.
Kieran is scheduled to have a bifrontal craniotomy with left, right
orbital advancement on June 30th, but I'm seriously considering
canceling it. We'll have to decide when all opinions are in.
The
scheduled procedure is not through one of the clinics. Although
I like
the neurosurgeon who would perform the surgery, I wonder if all of
his
care should go through a clinic. Unfortunately, until we
can change
our insurance, it's not possible right now, so it would mean a delay
in
any treatment.
I guess my questions are: is there anyone here that does not receive
care through a craniofacial clinic? Or has anyone transferred
to one
after having an initial surgery to release the sutures performed
elsewhere?
As you can tell, this important decision is weighing heavily right now.
I want the best for my baby, but it's so hard to tell what that is.
Thanks for listening and any input you can provide!
Sherry Roehl - mom to Kieran-3 mos w/Apert's, Laney-4 w/CVS, &
Bailey-7
=========================================================================
Date: Tue, 15 Jun 1999
02:27:33 EDT
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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From: AOL User <Munch35738@AOL.COM>
Subject: Re: prenatal diagnosis
MIME-Version: 1.0
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Thanks for the reply. I have learned something new. Mary
=========================================================================
Date: Tue, 15 Jun 1999
07:58:08 EDT
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From: Jenngram@AOL.COM
Subject: Re: Craniofacial Teams
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Jordan(21 mos) saw the Craniofacial Clinic in Tampa for the first
yearly
meeting. For me, personally, it didn't work out. I liked making my
own appts.
and having control over who Jordan saw and when. And since I was seeing
all
the same docs that were in clinic, it seemed a waste of our time to
spend a
day there. Now, our RN coordinator was not a very nice person, and
used to
chew me out for not calling her and telling her when Jordan had seen
a doctor
so she could update her files. I put up w/ this for about 7-8 mos.
then
pulled him. Luckily, we got our refferals during the 4 weeks he was
in NICU
after birth. Its a personal choice, plenty use them and like them.
I did not.
Annnnnnnd, on another note......I am employed again, the first time
since
Jordan was born, and he is lined up to start his little person school
(ie.....daycare) and I am really sad about the whole thing. Now you
must
realize that as soon as we walked into the center he ran from Joe and
I, and
was playing wiht everyone and everything. So its not like hes sad about
the
whole thing, he loves it...he was only sad to leave!!!!!! Its just
me......And I never expected to be this way about it.......I am getting
far
to sappy!!! Esp. since i know how much he'll enjoy it. Poor kid hasn't
had
any friends his entire 22 mos. b/c he stayed w/ me at home!!!! Ahhhhhh,
who
knows!!!! I suppose after a few weeks, I'll feel better about it.
Hope Myrtle Beach goers are having fun....I'm jealous!!!
Jenn(Columbus, Ohio)
=========================================================================
Date: Tue, 15 Jun 1999
08:12:36 -0400
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: Jack and Raquel
<jara1@BELLSOUTH.NET>
Subject: Myrtle Beach REUNION!!!
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
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Boy, what an exciting weekend this has been. We got back from
Myrtle
Beach last night Monday at around 7:30 P.M. we had a blast!!!
We met a total of ten other Apert families and now we can match faces
and personalities to those e-mails, it is just wonderful....
This has been the greatest experience that we could ever hope for.
It
was therapeutic, inspirational, emotional you name it IT WAS GREAT!!!
We have such a wonderful Apert family. We got a chance to meet
and
mingle with the Sears, Amermans, Tingleys (which by the way if we let
our 15 year old daughter Michelle get her way she would have stayed
with
them and headed up to Illinois), William's, Holts, Sieberts, Reed,
Brown, Krebs and the Hills. Everyone was wonderful with this
one common
bond that we share and it is amazing how it brings us all together.
I want to take this moment to thank Don and Cathie Sears for what they
have accomplished. I do not think they are aware of what a great
thing
they have done with the creation of Teeters Page and the listserv.
I
don't know what would be of us right now if it had not been for Don
and
Cathie Sears. God gave them Teeter and without them realizing
because
of Teeter they have helped oh so many people and are continuing to
help. You guys are the greatest and for that we THANK YOU..
This
listserv has been our Rock of Gibraltar that has helped us get through
and continue getting through what is ahead of us, I know that it is
a
long road but together we will make it..
I apologize for this letter but I feel that I need to write it and
express what I am feeling right now to all of you....
This trip to the Beach was wonderful and I can guarantee that everyone
that was able to make it there share the same feelings that we do.
This
will be done again next year and I encourage all of you that were not
able to make it to start saving up for next year and please make your
plans you will not regret it.
I also want to thank the Amermans, that Judy is a go getter, I want
to
thank them for the Pizza and get together also Maxine and her sister
for
the great cakes and all of you guys for being there......My goodness
it
was WONDERFUL!!!!
Well enough for now, but I will warn you though, after I'm finished
with
this e-mail and I forgot something I'll come back and send another
one!!!!
Love you all....
Raquel (Rachel) Miller.....
=========================================================================
Date: Tue, 15 Jun 1999
08:21:09 -0400
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: Jack and Raquel
<jara1@BELLSOUTH.NET>
Subject: Grandma
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
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Hello again, I told you I'd be back, I was catching up on all the
e-mails and came accross the one from Sherry Roehl to Marilyn Williams.
Sherry is oh so right there is no such thing as just a Grandma,
especially a Grandma like Marilyn, you guys should meet her that's
a
Grandma!!!!
Take Care
Raquel Miller
=========================================================================
Date: Tue, 15 Jun 1999
13:29:29 -0400
Reply-To: Information exchange and Internet
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From: Richard Thornquist
<rlthorn@EARTHLINK.NET>
Subject: Re: Craniofacial Teams
MIME-Version: 1.0
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Sherry,
I take Andrew to Craniofacial Clinic once a year, but I don't think
it is
like what your describing. We have been lucky with our insurance
company.
They have never given us a problem with anything. I have never
seen a bill
and we have a wonderful case manager.
Our Craniofacial Clinic is with Andrew's Plastic Surgeon, it is more
or less
an app. with him, but with many other doctors and residents.
Dr. Mulliken
is more teaching and explaining Andrew and his problems/surgeries to
younger
doctors. I think of it as more of a teaching thing for them than
help for
us. We go because we can have a dental consult at the same time,
so it gets
2 apps. over with at once. We also go for hearing tests at that
time as
well.
I think for me, what your describing is the National Birth Defects Center
here in Waltham, MA. But that is not through the insurance company,
the
insurance would pay for it if I chose to use them, but going to NBDC
is like
seeing a doctor. Some of Andrew's doctors see patients at NBDC
to make it
easier, because once again you can see multiple doctors at once.
They would
make apps. for me, but I choose to do it myself.
Well, let me get off that tangent, that won't help you. I wish
I could help
you more, but I can't. I really hope you can work everything
out with the
insurance company and stories like this once make me thankful for my
insurance company.
Lynn
=========================================================================
Date: Tue, 15 Jun 1999
21:22:41 -0500
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
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and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Randy & Deb
Picht <rldpicht@INFO.STARPOINT.NET>
Subject: Re: Craniofacial Teams
MIME-Version: 1.0
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Sherry,
Lisa had her first head surgery done in Sioux Falls, SD while she was
still
in the Intensive Care Nursery there. After that surgery they
did refer us
on to the Mayo clinic for any other problems with the syndrome simply
because they knew that the Mayo Clinic in Rochester had dealt with
other
kids with Aperts. I have told the Mayo Clinic to give our name
to other
people with Aperts because we could be an inspiration to other families
but
they could not give me other names. That was confidential.
We are very
happy with our doctors there. We go back once a year for their
cranialfacial clinic. We see many different people. From
Child
development, ENT, Orthodonist, Orthopedic, Optomologist, we'll see
the hand
surgeon and even Social Services. Social Services has helped
alot. We go
back again in August her checkup. It takes at least 1 1/2 days
to get
through it all. This time I am requesting another C-Scan because
1 was not
done last year and June of 1997 she had a major cranialfacial surgery
which
changed her appearance tremendously.
We like them there.
Deb Picht
Mother of Lisa 9 yrs old
-----Original Message-----
From: Greg and Sherry Roehl <gnsroehl@FLASH.NET>
To: APERT@LISTSERV.AOL.COM <APERT@LISTSERV.AOL.COM>
Date: Tuesday, June 15, 1999 12:43 AM
Subject: Craniofacial Teams
>Me again! I warned you that I'd have a lot of questions. :-)
>
>This time I'm wondering if everyone works with a craniofacial clinic.
>Our HMO is trying to reassure me that Kieran will get the care he
needs
>through their system, even though they don't have a craniofacial
>clinic. This is contrary to everything I've read and what I've
heard
>from Associations that deal with craniofacial anomalies. It
also goes
>against my gut instinct. Unfortunately, there's no way we could
>possibly afford to pay for everything ourselves, and our current
>insurance won't cover one.
>
>We have 2nd and 3rd opinions scheduled for this week at clinics.
When I
>spoke to managed care today, they agreed to pay for one of the plastic
>surgery opinions, but no more. When I talked about the neurosurgeon,
>they suggested I see another one in their system. I declined,
and will
>pay out of pocket for the remaining visits to the neurosurgeon and
>plastic surgeons affiliated with the clinics. The managed care
worker
>went so far as to suggest that I'll just confuse myself with all of
>these opinions with all these different doctors. While that
may be true
>to a degree, I feel I need to get all the information that I can before
>entrusting Kieran to anyone.
>
>Kieran is scheduled to have a bifrontal craniotomy with left, right
>orbital advancement on June 30th, but I'm seriously considering
>canceling it. We'll have to decide when all opinions are in.
The
>scheduled procedure is not through one of the clinics. Although
I like
>the neurosurgeon who would perform the surgery, I wonder if all of
his
>care should go through a clinic. Unfortunately, until
we can change
>our insurance, it's not possible right now, so it would mean a delay
in
>any treatment.
>
>I guess my questions are: is there anyone here that does not receive
>care through a craniofacial clinic? Or has anyone transferred
to one
>after having an initial surgery to release the sutures performed
>elsewhere?
>
>As you can tell, this important decision is weighing heavily right
now.
>I want the best for my baby, but it's so hard to tell what that is.
>
>Thanks for listening and any input you can provide!
>Sherry Roehl - mom to Kieran-3 mos w/Apert's, Laney-4 w/CVS, &
Bailey-7
>
=========================================================================
Date: Tue, 15 Jun 1999
23:24:41 -0400
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: Greg and Sherry
Roehl <gnsroehl@FLASH.NET>
Subject: Day Care
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
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Jenn,
I'm sure the separation will be much harder on you than it will be on
Jordan.
Isn't that almost always the case? I hope it works out well for
both of you!
Sherry - mom to Kieran-3mos w/Apert's, Laney-4 w/CVS & Bailey-7
Jenngram@AOL.COM wrote:
> Jordan(21 mos) saw the Craniofacial Clinic in Tampa for the
first yearly
> meeting. For me, personally, it didn't work out. I liked making my
own appts.
> and having control over who Jordan saw and when. And since I was
seeing all
> the same docs that were in clinic, it seemed a waste of our time
to spend a
> day there. Now, our RN coordinator was not a very nice person, and
used to
> chew me out for not calling her and telling her when Jordan had seen
a doctor
> so she could update her files. I put up w/ this for about 7-8 mos.
then
> pulled him. Luckily, we got our refferals during the 4 weeks he was
in NICU
> after birth. Its a personal choice, plenty use them and like them.
I did not.
>
> Annnnnnnd, on another note......I am employed again, the first time
since
> Jordan was born, and he is lined up to start his little person school
> (ie.....daycare) and I am really sad about the whole thing. Now you
must
> realize that as soon as we walked into the center he ran from Joe
and I, and
> was playing wiht everyone and everything. So its not like hes sad
about the
> whole thing, he loves it...he was only sad to leave!!!!!! Its just
> me......And I never expected to be this way about it.......I am getting
far
> to sappy!!! Esp. since i know how much he'll enjoy it. Poor kid hasn't
had
> any friends his entire 22 mos. b/c he stayed w/ me at home!!!! Ahhhhhh,
who
> knows!!!! I suppose after a few weeks, I'll feel better about it.
>
> Hope Myrtle Beach goers are having fun....I'm jealous!!!
>
> Jenn(Columbus, Ohio)
=========================================================================
Date: Tue, 15 Jun 1999
23:35:58 -0400
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: Greg and Sherry
Roehl <gnsroehl@FLASH.NET>
Subject: Insurance
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Lynn,
If you don't mind me asking, what insurance company do you have?
Also, anyone
that has insurance that works with & for them, I would love the
name of the
company! If things don't improve quickly for us, we may be switching
in
November when they have open enrollment at my husband's employer.
Since we haven't been seen by a full clinic yet, I'm not sure exactly
what to
expect. They've informed us that the cost would be prohibitive
for us to bear
it ourselves, and we've met, and will be meeting, with the plastic
surgeons
involved. After the insurance matters are straightened out, then
we may do a
full clinic.
Sherry - mom to Kieran-3mos w/Apert's, Laney-4 w/CVS & Bailey-7
Richard Thornquist wrote:
> Sherry,
>
> I take Andrew to Craniofacial Clinic once a year, but I don't think
it is
> like what your describing. We have been lucky with our insurance
company.
> They have never given us a problem with anything. I have never
seen a bill
> and we have a wonderful case manager.
>
> Our Craniofacial Clinic is with Andrew's Plastic Surgeon, it is more
or less
> an app. with him, but with many other doctors and residents.
Dr. Mulliken
> is more teaching and explaining Andrew and his problems/surgeries
to younger
> doctors. I think of it as more of a teaching thing for them
than help for
> us. We go because we can have a dental consult at the same
time, so it gets
> 2 apps. over with at once. We also go for hearing tests at
that time as
> well.
>
> I think for me, what your describing is the National Birth Defects
Center
> here in Waltham, MA. But that is not through the insurance
company, the
> insurance would pay for it if I chose to use them, but going to NBDC
is like
> seeing a doctor. Some of Andrew's doctors see patients at NBDC
to make it
> easier, because once again you can see multiple doctors at once.
They would
> make apps. for me, but I choose to do it myself.
>
> Well, let me get off that tangent, that won't help you. I wish
I could help
> you more, but I can't. I really hope you can work everything
out with the
> insurance company and stories like this once make me thankful for
my
> insurance company.
>
> Lynn
=========================================================================
Date: Tue, 15 Jun 1999
23:42:35 -0400
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: Greg and Sherry
Roehl <gnsroehl@FLASH.NET>
Subject: Re: Craniofacial Teams
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
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Deb,
Thanks for sharing your experience. My husband is still a little
skeptical of
the clinic approach. I guess he, as has been said by others,
doesn't really
understand the reason for it, if you see the doctors separately anyway.
Can
you explain what you feel the purpose for it is? Thanks.
Sherry - mom to Kieran-3mos, Laney-4 w/CVS & Bailey-7
Randy & Deb Picht wrote:
> Sherry,
>
> Lisa had her first head surgery done in Sioux Falls, SD while she
was still
> in the Intensive Care Nursery there. After that surgery they
did refer us
> on to the Mayo clinic for any other problems with the syndrome simply
> because they knew that the Mayo Clinic in Rochester had dealt with
other
> kids with Aperts. I have told the Mayo Clinic to give our name
to other
> people with Aperts because we could be an inspiration to other families
but
> they could not give me other names. That was confidential.
We are very
> happy with our doctors there. We go back once a year for their
> cranialfacial clinic. We see many different people. From
Child
> development, ENT, Orthodonist, Orthopedic, Optomologist, we'll see
the hand
> surgeon and even Social Services. Social Services has helped
alot. We go
> back again in August her checkup. It takes at least 1 1/2 days
to get
> through it all. This time I am requesting another C-Scan because
1 was not
> done last year and June of 1997 she had a major cranialfacial surgery
which
> changed her appearance tremendously.
>
> We like them there.
>
> Deb Picht
> Mother of Lisa 9 yrs old
> -----Original Message-----
> From: Greg and Sherry Roehl <gnsroehl@FLASH.NET>
> To: APERT@LISTSERV.AOL.COM <APERT@LISTSERV.AOL.COM>
> Date: Tuesday, June 15, 1999 12:43 AM
> Subject: Craniofacial Teams
>
> >Me again! I warned you that I'd have a lot of questions. :-)
> >
> >This time I'm wondering if everyone works with a craniofacial clinic.
> >Our HMO is trying to reassure me that Kieran will get the care he
needs
> >through their system, even though they don't have a craniofacial
> >clinic. This is contrary to everything I've read and what
I've heard
> >from Associations that deal with craniofacial anomalies. It
also goes
> >against my gut instinct. Unfortunately, there's no way we
could
> >possibly afford to pay for everything ourselves, and our current
> >insurance won't cover one.
> >
> >We have 2nd and 3rd opinions scheduled for this week at clinics.
When I
> >spoke to managed care today, they agreed to pay for one of the plastic
> >surgery opinions, but no more. When I talked about the neurosurgeon,
> >they suggested I see another one in their system. I declined,
and will
> >pay out of pocket for the remaining visits to the neurosurgeon and
> >plastic surgeons affiliated with the clinics. The managed
care worker
> >went so far as to suggest that I'll just confuse myself with all
of
> >these opinions with all these different doctors. While that
may be true
> >to a degree, I feel I need to get all the information that I can
before
> >entrusting Kieran to anyone.
> >
> >Kieran is scheduled to have a bifrontal craniotomy with left, right
> >orbital advancement on June 30th, but I'm seriously considering
> >canceling it. We'll have to decide when all opinions are in.
The
> >scheduled procedure is not through one of the clinics. Although
I like
> >the neurosurgeon who would perform the surgery, I wonder if all
of his
> >care should go through a clinic. Unfortunately, until
we can change
> >our insurance, it's not possible right now, so it would mean a delay
in
> >any treatment.
> >
> >I guess my questions are: is there anyone here that does not receive
> >care through a craniofacial clinic? Or has anyone transferred
to one
> >after having an initial surgery to release the sutures performed
> >elsewhere?
> >
> >As you can tell, this important decision is weighing heavily right
now.
> >I want the best for my baby, but it's so hard to tell what that
is.
> >
> >Thanks for listening and any input you can provide!
> >Sherry Roehl - mom to Kieran-3 mos w/Apert's, Laney-4 w/CVS, &
Bailey-7
> >
=========================================================================
Date: Tue, 15 Jun 1999
22:49:50 -0500
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From: "Niemi, Liz"
<Liz.Niemi@NMB.NORWEST.COM>
Subject: Re: Insurance
MIME-Version: 1.0
Content-Type: text/plain
Sherry,
We have HealthPartners here in Minneapolis as our main insurance carrier.
We have never had to pay any costs out of pocket for surgeries or medical
supplies, even with all of the trach equipment Jake required on a regular
basis. If he needed medicine, we would pay the minimum $8.00
amount for the
prescription. All follow-up visits required only a $10.00 co-pay
from us.
The only ONE drawback from them (which was a MAJOR one for us), was
that
they did not provide any in-home nursing care to a trach dependent
child.
It was their policy that taking care of a trach was not a skilled nursing
task, and therefore did not need an RN. The rest has been WONDERFUL!!
Liz Niemi and Family
-----Original Message-----
From: Greg and
Sherry Roehl [SMTP:gnsroehl@FLASH.NET]
Sent: Tuesday,
June 15, 1999 10:36 PM
To:
APERT@LISTSERV.AOL.COM
Subject:
Insurance
Lynn,
If you don't mind me asking,
what insurance company do you have?
Also, anyone
that has insurance that
works with & for them, I would love the name
of the
company! If things
don't improve quickly for us, we may be
switching in
November when they have
open enrollment at my husband's employer.
Since we haven't been seen
by a full clinic yet, I'm not sure
exactly what to
expect. They've informed
us that the cost would be prohibitive for
us to bear
it ourselves, and we've
met, and will be meeting, with the plastic
surgeons
involved. After the
insurance matters are straightened out, then we
may do a
full clinic.
Sherry - mom to Kieran-3mos w/Apert's, Laney-4 w/CVS & Bailey-7
Richard Thornquist wrote:
> Sherry,
>
> I take Andrew to Craniofacial
Clinic once a year, but I don't
think it is
> like what your describing.
We have been lucky with our insurance
company.
> They have never given
us a problem with anything. I have never
seen a bill
> and we have a wonderful
case manager.
>
> Our Craniofacial Clinic
is with Andrew's Plastic Surgeon, it is
more or less
> an app. with him, but
with many other doctors and residents. Dr.
Mulliken
> is more teaching and explaining
Andrew and his problems/surgeries
to younger
> doctors. I think
of it as more of a teaching thing for them than
help for
> us. We go because
we can have a dental consult at the same time,
so it gets
> 2 apps. over with at once.
We also go for hearing tests at that
time as
> well.
>
> I think for me, what your
describing is the National Birth Defects
Center
> here in Waltham, MA.
But that is not through the insurance
company, the
> insurance would pay for
it if I chose to use them, but going to
NBDC is like
> seeing a doctor.
Some of Andrew's doctors see patients at NBDC to
make it
> easier, because once again
you can see multiple doctors at once.
They would
> make apps. for me, but
I choose to do it myself.
>
> Well, let me get off that
tangent, that won't help you. I wish I
could help
> you more, but I can't.
I really hope you can work everything out
with the
> insurance company and
stories like this once make me thankful for
my
> insurance company.
>
> Lynn
=========================================================================
Date: Wed, 16 Jun 1999
06:11:25 -0400
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From: Colleen Jones
<coljones@PTDPROLOG.NET>
Subject: insurance and craniofacial clinics
MIME-Version: 1.0
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We live in PA and have an HMO insurance called the Geisinger Health
Plan.
This covers medical things done at Geisinger hospital and Hershey Medical
Center. We have only had one surgery done elsewhere at Children's
Hospital
of Philadelphia (forehead advancement). Geisinger would not pay for
that
but we also have Blue Cross and Blue Shield. The best thing we
have done,
however, is get Jacob a medical assistance card through the state.
Even
though my husband and I both work and make decent money, there was
a
loophole that allowed us to get Jacob the card. This covers whatever
the
insurance does not. Have you checked into this possibility in your
state?
We contacted the county assistance offfice soon after Jacob was born.
As far as craniofacial clinics, we were not extremely pleased with
the
neurosurgeon at Geisinger (a fairly small country hosp.). He did do
Jacob's
first suture release when he was 3 mos old. We decided we wanted
to go
somewhere that had just a little more experience with Apert's so we
got a
referral to go to Children's Hospital for a full clinic evaluation.
It
makes for an extremely long day of appointments but we felt it was
worth
it. Jacob had his forehead advancement surgery done there when
he was a
little over one. Geisinger would not pay because they said it
was not
necessary but the other insurances picked up the tab. So far we have
not
had to pay anything. We go to the clinic in the fall although the only
doctor we really need to see is the plastic surgeon that would do any
more
facial surgeries. All the other doctors we use are local at Geisinger
Hosp.
Hope any of this helps, check into the assistance card.
Colleen Jones and gang
Gang includes Julianne (6), Jacob (soon to be 3 with Apert's), and
Jessica
(1 and 1/2 going on 5)
coljones@ptdprolog.net
=========================================================================
Date: Wed, 16 Jun 1999
06:15:24 -0400
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From: Colleen Jones
<coljones@PTDPROLOG.NET>
Subject: Jacob's hand infection
MIME-Version: 1.0
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Dear all,
Thank you all for the prayers for Jacob's hand infection. So
far the
medicine seems to be working. He has gone 6 weeks without a flair up,
the
longest time since Jan.. They are keeping him on the Vantin for another
6
weeks so keep him in your prayers if you don't mind. I get nervous
getting
my hopes up that this med worked because I don't want to be discouraged
if
it gets reinfected!!
Thanks again
Colleen and gang (PA)
coljones@ptdprolog.net
=========================================================================
Date: Wed, 16 Jun 1999
08:09:13 EDT
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From: Jenngram@AOL.COM
Subject: Re: Insurance
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Our insurance company has worked very well with us this past 2 yrs,
and we
were even receiving services "out of network"....our carrier was in
Missouri
w/ my husbands school, and we were in Florida. We had Blue Cross Blue
Shield.
I also know that my insurance which I had COBRA'ed right when we moved
were
wonderful, even out of network....That one was United Healthcare
Jenn
=========================================================================
Date: Wed, 16 Jun 1999
08:21:46 EDT
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From: Jenngram@AOL.COM
Subject: Re: Craniofacial Teams
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I think every clinic runs differently and for different reasons. Like
Lynn
said, Andrew's team does a lot of educating young doctors. Ours in
Florida
was to help parents, make sure their children saw the specialist they
needed
to see. For a lot of families, who lived out of town and traveled to
Tampa to
see all the specialist, it was nice to do it all in 1 day. Since we
lived in
town, and I wasn't working, it was just easier, and I preferred to
make my
own appts. and see the doctors as it was convienant to me and Jordan.
As an
infant, 2-3 hrs and 4-5 doctors was a long day for him. And like I
said, we
were sseeing Plastics, Neuro, Speech, Genetics, Speech and Hearing
and
Developmental already on our own time frame.
Our team was sponsored by Childrens Medical Services.....kinnda like
HRS....so if your child qualified, regardless of income, then it was
a free
service to you and your family. Each state funds these things differently.
Our developmental physician put us in touch with them shortly after
Jordan
was born.
You can always try it out, and if it doesn't work then decide not to
do so
next time. regardless, I would get second opinions.Even though we stuck
w/
our local doctors, I got 3 other opinions frome some of the other doctors
around the country (my local doctor sent pictures, records, and CT
scans, and
X-rays to whomever I requested). This helped put my mind at ease a
great
deal. And I love him so much that, I am considering going back to him
when
Jordan has his midface in a few years, even though his doctor
discourages me
from doing so, and wants to help me find someone closer in our area.
But I
have such complete trust in him and a physican and a person.
Anyway, this has gotten too long....hope some of the information you
are
getting helps
Jenn
=========================================================================
Date: Wed, 16 Jun 1999
11:04:19 +0000
Reply-To: Information exchange and Internet
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Comments: Authenticated sender is <jgibson2@POP.erols.com>
From: jgibson2@EROLS.COM
Subject: Re: Insurance
In-Reply-To: <59989EE00CC0D0118F7B0008C7F4687801D2C183@m303.nmb.norwest.com>
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> It was their policy that taking care of a trach was not a skilled
nursing
> task, and therefore did not need an RN. The rest has been WONDERFUL!!
If anyone else faces this, I'd suggest that they check
out a copy
of their state Nursing Practice Act -- or ask the state Board of
Nursing for a clarification on this. If it's codified in the
law
(and it may well be in many states) they won't have much choice.
Judy (wandering off now to find out what the MD nursing practice act
says)
=========================================================================
Date: Wed, 16 Jun 1999
16:13:20 EDT
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Sender: Information exchange and
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From: Firefli007@AOL.COM
Subject: Re: Myrtle Beach REUNION!!!
MIME-Version: 1.0
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Hello Everybody!
Jenny from georgia here and I'd like to echo what Raquel said.
WE HAD A
BLAST!!! It was most incredible...therapeutic... inspirational,...
fun... and
words will NEVER describe the healing that my heart has had....meeting
these
GREAT families and wonderful kids and sharing my life with Max was
incredible
incredible... GOD BLESS cat and Don and Teeterr for this weeb
Page... THANK
YOU!
THANK YOU!! THANK YOU!!!
Still riding the emotional high!
Jenny
=========================================================================
Date: Wed, 16 Jun 1999
17:34:19 -0400
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From: Richard Thornquist
<rlthorn@EARTHLINK.NET>
Subject: Re: Insurance
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Sherry,
We carry Tuft's Health Plan (HMO) for our insurance. Our case
manager is Sherry
Bondurant and she is wonderful. They sometimes call just to see
how Andrew is
doing, especially after a surgery has been performed.
Let me know if you need anything else.
Lynn
=========================================================================
Date: Wed, 16 Jun 1999
18:30:15 -0400
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From: Jack and Raquel
<jara1@BELLSOUTH.NET>
Subject: Re: Insurance
MIME-Version: 1.0
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Sherry,
Hi there, in responding to your question on what insurance carrier
we have it is
AVMED and we have had no problems with them paying. So far our
Nicole has had the
following surgeries: tubes placed in her ears, cranial vault remodoling
and
orbital advancement, eye muscle surgery and two hand surgeries she
also wore a
helmet for 6 months (that cost about $2,000.00) insurance also covered
that along
with the visits to the therapist associated with the helmet.
Talk later..
Raquel Miller
Greg and Sherry Roehl wrote:
> Lynn,
>
> If you don't mind me asking, what insurance company do you have?
Also, anyone
> that has insurance that works with & for them, I would love the
name of the
> company! If things don't improve quickly for us, we may be
switching in
> November when they have open enrollment at my husband's employer.
>
> Since we haven't been seen by a full clinic yet, I'm not sure exactly
what to
> expect. They've informed us that the cost would be prohibitive
for us to bear
> it ourselves, and we've met, and will be meeting, with the plastic
surgeons
> involved. After the insurance matters are straightened out,
then we may do a
> full clinic.
>
> Sherry - mom to Kieran-3mos w/Apert's, Laney-4 w/CVS & Bailey-7
>
> Richard Thornquist wrote:
>
> > Sherry,
> >
> > I take Andrew to Craniofacial Clinic once a year, but I don't think
it is
> > like what your describing. We have been lucky with our insurance
company.
> > They have never given us a problem with anything. I have
never seen a bill
> > and we have a wonderful case manager.
> >
> > Our Craniofacial Clinic is with Andrew's Plastic Surgeon, it is
more or less
> > an app. with him, but with many other doctors and residents.
Dr. Mulliken
> > is more teaching and explaining Andrew and his problems/surgeries
to younger
> > doctors. I think of it as more of a teaching thing for them
than help for
> > us. We go because we can have a dental consult at the same
time, so it gets
> > 2 apps. over with at once. We also go for hearing tests at
that time as
> > well.
> >
> > I think for me, what your describing is the National Birth Defects
Center
> > here in Waltham, MA. But that is not through the insurance
company, the
> > insurance would pay for it if I chose to use them, but going to
NBDC is like
> > seeing a doctor. Some of Andrew's doctors see patients at
NBDC to make it
> > easier, because once again you can see multiple doctors at once.
They would
> > make apps. for me, but I choose to do it myself.
> >
> > Well, let me get off that tangent, that won't help you. I
wish I could help
> > you more, but I can't. I really hope you can work everything
out with the
> > insurance company and stories like this once make me thankful for
my
> > insurance company.
> >
> > Lynn
=========================================================================
Date: Wed, 16 Jun 1999
20:25:43 -0500
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From: Randy & Deb
Picht <rldpicht@INFO.STARPOINT.NET>
Subject: Re: Craniofacial Teams
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Sherry,
We are from a town of about 12,000 people. We do not have specialists
around here. The closest is Sioux Falls, SD and they referred
us on to
Rochester. I like the cranialfacial clinic because we get all
of her
appointments out of the way in 2 days. If we lived in the Minneapolis
area
it would probably be different. All the doctors in the clinic
meet together
after we have seen all of them and discuss her case. It's more
of a team
effort.
The only thing that I see the local doctors for is emergencies.
Thanks
-----Original Message-----
From: Greg and Sherry Roehl <gnsroehl@FLASH.NET>
To: APERT@LISTSERV.AOL.COM <APERT@LISTSERV.AOL.COM>
Date: Tuesday, June 15, 1999 10:45 PM
Subject: Re: Craniofacial Teams
>Deb,
>
>Thanks for sharing your experience. My husband is still a little
skeptical
of
>the clinic approach. I guess he, as has been said by others,
doesn't
really
>understand the reason for it, if you see the doctors separately anyway.
Can
>you explain what you feel the purpose for it is? Thanks.
>
>Sherry - mom to Kieran-3mos, Laney-4 w/CVS & Bailey-7
>
>Randy & Deb Picht wrote:
>
>> Sherry,
>>
>> Lisa had her first head surgery done in Sioux Falls, SD while she
was
still
>> in the Intensive Care Nursery there. After that surgery they
did refer
us
>> on to the Mayo clinic for any other problems with the syndrome simply
>> because they knew that the Mayo Clinic in Rochester had dealt with
other
>> kids with Aperts. I have told the Mayo Clinic to give our
name to other
>> people with Aperts because we could be an inspiration to other families
but
>> they could not give me other names. That was confidential.
We are very
>> happy with our doctors there. We go back once a year for their
>> cranialfacial clinic. We see many different people.
From Child
>> development, ENT, Orthodonist, Orthopedic, Optomologist, we'll see
the
hand
>> surgeon and even Social Services. Social Services has helped
alot. We
go
>> back again in August her checkup. It takes at least 1 1/2
days to get
>> through it all. This time I am requesting another C-Scan because
1 was
not
>> done last year and June of 1997 she had a major cranialfacial surgery
which
>> changed her appearance tremendously.
>>
>> We like them there.
>>
>> Deb Picht
>> Mother of Lisa 9 yrs old
>> -----Original Message-----
>> From: Greg and Sherry Roehl <gnsroehl@FLASH.NET>
>> To: APERT@LISTSERV.AOL.COM <APERT@LISTSERV.AOL.COM>
>> Date: Tuesday, June 15, 1999 12:43 AM
>> Subject: Craniofacial Teams
>>
>> >Me again! I warned you that I'd have a lot of questions.
:-)
>> >
>> >This time I'm wondering if everyone works with a craniofacial clinic.
>> >Our HMO is trying to reassure me that Kieran will get the care
he needs
>> >through their system, even though they don't have a craniofacial
>> >clinic. This is contrary to everything I've read and what
I've heard
>> >from Associations that deal with craniofacial anomalies.
It also goes
>> >against my gut instinct. Unfortunately, there's no way we
could
>> >possibly afford to pay for everything ourselves, and our current
>> >insurance won't cover one.
>> >
>> >We have 2nd and 3rd opinions scheduled for this week at clinics.
When I
>> >spoke to managed care today, they agreed to pay for one of the
plastic
>> >surgery opinions, but no more. When I talked about the neurosurgeon,
>> >they suggested I see another one in their system. I declined,
and will
>> >pay out of pocket for the remaining visits to the neurosurgeon
and
>> >plastic surgeons affiliated with the clinics. The managed
care worker
>> >went so far as to suggest that I'll just confuse myself with all
of
>> >these opinions with all these different doctors. While that
may be true
>> >to a degree, I feel I need to get all the information that I can
before
>> >entrusting Kieran to anyone.
>> >
>> >Kieran is scheduled to have a bifrontal craniotomy with left, right
>> >orbital advancement on June 30th, but I'm seriously considering
>> >canceling it. We'll have to decide when all opinions are
in. The
>> >scheduled procedure is not through one of the clinics. Although
I like
>> >the neurosurgeon who would perform the surgery, I wonder if all
of his
>> >care should go through a clinic. Unfortunately, until
we can change
>> >our insurance, it's not possible right now, so it would mean a
delay in
>> >any treatment.
>> >
>> >I guess my questions are: is there anyone here that does not receive
>> >care through a craniofacial clinic? Or has anyone transferred
to one
>> >after having an initial surgery to release the sutures performed
>> >elsewhere?
>> >
>> >As you can tell, this important decision is weighing heavily right
now.
>> >I want the best for my baby, but it's so hard to tell what that
is.
>> >
>> >Thanks for listening and any input you can provide!
>> >Sherry Roehl - mom to Kieran-3 mos w/Apert's, Laney-4 w/CVS, &
Bailey-7
>> >
>
=========================================================================
Date: Wed, 16 Jun 1999
22:36:43 EDT
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Beth:
You should be very proud of Tim and your other children as well.
Sounds like
you family is doing wonderful.
Good luck on your tests.
Janine
=========================================================================
Date: Wed, 16 Jun 1999
22:34:51 EDT
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From: Yonstein@AOL.COM
Subject: Re: Myrtle Beach REUNION!!!
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So that makes it unanimous! We just got home and I have 121 messages
to get
through. (I cheated and started at the end.) This trip
was the best thing
that we ever did. Meeting the families and seeing the kids and
sharing with
Max and Jenny's lives ... there really aren't words to describe
it.
I felt like I spent 4 days with a family I have known my entire life.
We
laughed and cried together, especially saying good-bye. We are
already
planning next year's reunion. I, too, urge everyone wherever
possible to
plan and save for it. It's an experience that is remarkable.
To echo Raquel's words, Don and Cathie, THANK YOU. As I told you
when
leaving, I feel like you literally saved my life when Emily was born.
Now
all I have to do is wait until tomorrow to pick up all 3 rolls of film.
Yahoo!!!
Miss you guys already!!!!
Love,
Janine, Brian, Nicholas and Emily
PS: Judy, my Nick sends a special hello to your Nick.
=========================================================================
Date: Wed, 16 Jun 1999
22:39:00 EDT
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From: Yonstein@AOL.COM
Subject: Re: I'M HOME
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Andrea:
Glad to hear you're home. By now I hope you are recovered and
doing well.
Looking forward to hearing all about it.
Best wishes
Janine
=========================================================================
Date: Wed, 16 Jun 1999
22:36:19 +0000
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From: "J. G. Lindamood"
<chanan8@JUNO.COM>
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I have declared Wednesday's as Jo's Night Out. We'll see how long
this
lasts. My mission is to get out there and have some fun even
if I am
doing it with me and only me. Tonight was the opening night,
if you
will. I went to a movie - Notting Hill. It was good, but
maybe not the
movie a lonely 34 year old female needed to see. The fact that
I am
getting out over rode any emotional downers the movie might have
inflicted on me. I just consumed a bowl of bananas, strawberries,
fudge
syrup and some ice cream. My rendition to a sundae, little ice
cream,
lots of stuff! This is what Wednesdays will be like, getting
out and
pigging out.
My problem, or perhaps the symptom is I am intimidated to go out in
public alone. When I'm with someone I don't notice the stares
and second
glances as much. Then there's the paranoid thoughts of what they
might
be thinking of me. I joined the local pool for the summer - swimming
is
my all time favorite thing to do in the summer. Until now I was
scared
spit-less to appear in a swim suit in public alone.
I feel as though I am in the middle of a corner, making the turn.
Mornings are the worst time for me. Hopefully tomorrow will be
better.
Thanks for your thoughts and prayers!
Joanne, cool in Ohio - How's this weather Jenn???
=========================================================================
Date: Wed, 16 Jun 1999
22:41:37 EDT
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From: Yonstein@AOL.COM
Subject: Re: Daryl's tendon transplant
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Denise:
Glad to hear that Daryl's transplant went well. It's such a relief
when a
surgery is succesful, especially since our kids have to have so many.
Hope
he's recovered.
Best wishes,
Janine
=========================================================================
Date: Wed, 16 Jun 1999
22:43:10 EDT
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From: Yonstein@AOL.COM
Subject: Re: APERT Digest - 3 Jun 1999
to 4 Jun 1999 (#1999-154)
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Patti and Jasmyn:
Glad to hear that the surgery was a success. I was looking at
the pictures
from last year and thought Jasmyn looked wonderful. She's so
adorable. Was
the midface to help with breathing?
Hope all is well.
Janine
=========================================================================
Date: Wed, 16 Jun 1999
19:47:20 -0700
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From: "Scott Pengelly,
Ph.D." <scottp@EUGENEEZ.NET>
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Hey, Joanne:
Like your writing and I like your spirit. Good going.
All the best,
Scott Pengelly
J. G. Lindamood wrote:
> I have declared Wednesday's as Jo's Night Out. We'll see how
long this
> lasts. My mission is to get out there and have some fun even
if I am
> doing it with me and only me. Tonight was the opening night,
if you
> will. I went to a movie - Notting Hill. It was good,
but maybe not the
> movie a lonely 34 year old female needed to see. The fact that
I am
> getting out over rode any emotional downers the movie might have
> inflicted on me. I just consumed a bowl of bananas, strawberries,
fudge
> syrup and some ice cream. My rendition to a sundae, little
ice cream,
> lots of stuff! This is what Wednesdays will be like, getting
out and
> pigging out.
>
> My problem, or perhaps the symptom is I am intimidated to go out
in
> public alone. When I'm with someone I don't notice the stares
and second
> glances as much. Then there's the paranoid thoughts of what
they might
> be thinking of me. I joined the local pool for the summer -
swimming is
> my all time favorite thing to do in the summer. Until now I
was scared
> spit-less to appear in a swim suit in public alone.
>
> I feel as though I am in the middle of a corner, making the turn.
> Mornings are the worst time for me. Hopefully tomorrow will
be better.
>
> Thanks for your thoughts and prayers!
> Joanne, cool in Ohio - How's this weather Jenn???
=========================================================================
Date: Wed, 16 Jun 1999
22:54:05 EDT
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From: Yonstein@AOL.COM
Subject: Re: Kris' Big Day!
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CONGRATULATION Kris. Can't wait to see the pictures of your day.
It sounds like a fairytale. Glad you enjoyed it.
Janine Krebs
=========================================================================
Date: Thu, 17 Jun 1999
00:00:17 EDT
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From: Sheila MacDonald
<SMacdo1030@AOL.COM>
Subject: Fwd: Get in on it !!!!
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Return-path: SMacdo1030@aol.com
From: SMacdo1030@aol.com
Full-name: SMacdo1030
Message-ID: <fa9e9806.2499cc71@aol.com>
Date: Wed, 16 Jun 1999 23:58:41 EDT
Subject: Fwd: Get in on it !!!!
To: joecataldo@worldnet.att.net
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Date: Wed, 16 Jun 1999 23:56:41 EDT
Subject: Get in on it !!!!
To: pumfrey2@worldnet.att.net
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X-Mailer: AOL 4.0 for Windows 95 sub 13
There is a new company called popularlink that is going public, and
to get
their name out, they are offering free shares to build awareness.
I received
this information this afternoon and have already successfully registered.
There are additional shares for each person referred, for a total of
20. To
obtain your free shares, register on their website at
http://www.popularlink.com
Please log in my email address as the one who referred you, it is
SMacdo1030@aol.com Pass on the word to others; you can get up
to 20
additonal shares for each person you tell who registers. The
last two
companies who did this were Amazon and Yahoo! so don't delay
and sign up
now! Please don't forget to mention my email address.
Thanks,
Sheila
--part2_fa9e9806.2499cc71_boundary--
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=========================================================================
Date: Thu, 17 Jun 1999
00:09:43 -0400
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From: Mechelle Holt
<MOM-POOH-of-2@WEBTV.NET>
Subject: Myrtle Beach REUNION!!!
In-Reply-To: Jack and Raquel <jara1@BELLSOUTH.NET>'s message
of Tue, 15 Jun
1999 08:12:36 -0400
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Raquel,
How beautifully put! We also has a WONDERFUL time!
It was a moment
of peace getting to meet other families who share your joys, and
sadness. Although the only sadness at the beach was when everyone
started leaving! I am excited about ur return trip next year!!!!!!!!
ONCE AGAIN if it hadn't been for the Sear's, none of this would have
been possible! WE THANK YOU GUYS FROM THE BOTTOM OF OUR HEARTS!!!!!
It
was a trip, which will not be forgotten! I took 4 rolls of film,
and I
got them developed today! Some of the photos, will make you cry,
just
seeing the compassion these kids have for one another. They are
hugging, and the babies were communicating. It is a warm memory,
in
which they expressed themselves freely. I also encourage everyone
to
try to come next year! :) Has anyone had problems with blood
drainage
from the tubes? Courtney doesn't have any yellow drainage, just
blood.
Well, we have pre-op, and ENT appt tomorrow, so good night for now!
Mechelle
=========================================================================
Date: Wed, 16 Jun 1999
22:30:06 -0600
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From: baconsmith <bluenose@TELUSPLANET.NET>
Subject: Re: what's up
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Hello out there back to you!
I haven't been on the beach, but I've been thinking about everyone gathered
there. We have been in Vancouver for EvaJessie's clinic.
Joanne, you just struck a chord. I know what you mean about just
finding
the oomph to propel yourself forward. I don't how it happens,
but somehow,
it does happen that you get it back and a change happens. It's
cyclical,
but its a real bag just before it turns. Have faith. It
will happen,
whatever is needed to help you make the change you need to do.
I sort of
like George's butterfly story.
Do something just for grins the next time it hits you. Anything.
Just do
it and maybe try and catch the spirit of just being part of it. Hard
for me
to describe the feeling without sounding like Alice in Wonderland (forgive)
, but anyway. I'd say also, maybe allow yourself to do some dreaming
--
think about a good time to make change happen, and plan to catch your
natural wave of energy that you put into learning ... for me, the new
year
begins in September, so I'm starting to dream a little about what I
might be
interested in as a treat for myself -- usually its a course in something.
Anyway, I'm a fine one to be dealing out advice!
And it isn't really advice, just a few wild ideas. Wouldn't you
just love
to go on one of those 6-week university courses overseas -- studying
the art
and architecture of Italy, France and so on. Or a cooking course
for three
weeks in Tuscany. Why not says I?
I once white water rafted down the Green River from Colorado Springs
to Moab
Utah. 3 days and 2 nights on the river. With a tour group.
It was excellent.
Anyway, maybe there's a wild and crazy Joanne that you're just not telling
us about.
Hope you get yourself jump started pretty soon. It'll happen.
Pat
mom to Evajessie
www.widesmile.org/gallery/peach
www.widesmile.org/gallery/peach/staged
=========================================================================
Date: Wed, 16 Jun 1999
22:46:07 -0700
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From: rreed <rreed@CABLEONE.NET>
Subject: Max is BACK from Myrtle Beach
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HI all Iam Back! and I already miss everyone who was at Myrtle Beach!,
and
the ones who are still there. I wish I was there too sitting on the
porch
until 2 in the morning! I had a blast and I learned a lot from you
parents
and from Jenny Brown. Which I think we hit it off great! I too will
be going
back.So I hope some more people will come because I would love to meet
more
of you. I hope you all will come because it's a great family vacation
spot
and a great place to have an Aperts family reunion. I know I'll be
back. I
too am very greatful to Don and Cathie for putting Teeter's page up.
I've
found alot of neat and fun bunch of people. And Iam learning alot about
Aperts, which I have from all you parents.
Hi to Greg and Sherry Roehl welcome to the Aperts
family. My name is
Maxine Reed but everybody calls me Max Iam 45 and I have Aperts. Iam
happliy
Married to a great guy named Bob and we have a 15 year old going on
20! year
old daughter. She very normal and will be coming with my hubby next
year to
Myrtle Beach! I haven't had any seizures my self. Iam not really sure
if
they are or not. You can read all about me on Teeter's page. If you
have any
questions to ask me just E-mail me at: rreed@cableone.net or you can
E-mail
me here I'll be happy to answer any questions that you have.
Hi Patti Iam so glad that Jasmyn is home. now that
she home she'll
recover real fast.
Brenda I too like Rachel Fletcher have web feet
and I have no problems
with them except that I too have problems with finding wide enough
shoes. I
wear rebocs and airsoles.
Hi Dori Robin shared her pictures of Seth with us at Myrtle
Beach. WOW is
right. Seth's before and after pictures are great. He really looks
different. I bet he likes the new look!
Ruth can't wait to see the pictures of Kris's Quinceanera.
The way that
you disscribe it I bet she did look like a Angel. Well I can't wait
to see
them.
Grandparents are special and Marilyn Williams is
a special grandma! I
had so much fun meeting her and Cristy and everyone else who were there
at
Myrtle Beach! I had special Grandparents ho all the grand children
enjoyed
spending summer and Christmas vacations with. They made it a special
time
with each Grandchild when we were there.
Well I better close this is another long one. That Cathie
and Judy like!
Hey Don have you tryed the tred mill again. You better watch out for
your
hind legs. For those of you who weren't there. You'll have to ask Don
about
the Tredmill ride. Well I miss those late night chats. I still
haven't had
a full nights sleep. But I did take 2 naps yesterday at my sisters,
so I
guess Iam getting over the jet lag. Mechele Holt. I'll be home all
day
tomorrow so if you want to call me you can. I heard you called acouple
of
times while I was gone. Iam sorry I missed you? Judy did you ever get
back
at Mike Hill for calling you Minnie Pearl? Iam sorry that I wasn't
able to
say good-bye to the Amermans and to Don and Cathie I tryed to find
you but
couldn't, but maybe it was good thing because I probley start crying
like at
the pool. I love you guys. I love you all that was there and I enjoyed
the
whole trip! Don and Cathie are the greatest and have done great thing
with
creating Teeters page and the listsever. It's a life saver. Well gota
go. My
hubby wants me to go to bed.Did Butch the security guard ever find
that
shower curtian? Another inside joke!
Joanne keep looking up. Things bound to get better.
You're in my
thoughts and prayers.My prayers go out to all of thoses that I having
surgery and prayer to the parents too. Courtney I'll be thinking about
you
on 6-30-99 and your in my prayers too along with Mom and Dad. Take
care all.
Seeyou all next year. Love ya Max
=========================================================================
Date: Thu, 17 Jun 1999
03:20:10 EDT
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From: Lisa Guyette
<LAM1126@AOL.COM>
Subject: Re: Samantha Guyette
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Hi everyone,
It sounds like Myrtle Beach was wonderful. I'm really enjoying
reading about
it.
It has been a long week. Samantha and I left at 8:00 a.m. Tuesday
to go to
Children's Hospital about a hour away. She did her preops which
took four
hours. We stayed at my mother-in-laws that night after visiting
my parents.
She entertained them all until 10 p.m., like she knew she needed to
calm
their souls. At 10 p.m. the hospital called and said that they
wanted us
three hours earlier. Which was 6:30 a.m.
While we were with another family waiting for the liquid valium to set
in we
spoke to the anestheologist. This was when it all hit.
I started to cry and
my husband was upset that the Dr. was so obvious about not knowing
anything
about our child. A nurse told us that they don't until right
before surgery.
I just wish he couldn't of at least made us think that he was
up all night
studying her case. The other family were crying too.
This was when our
seven month old looked around the room in a very loaded state and said
"HI."
It relieved a lot of tension.
How sad it is when you hand your child to the nurses and watch them
walk
through the OR doors. I cried everytime I saw another mother
go through it
while we waited. My husband and I discovered that we really are
compatible.
We both can't sit in the waiting room. We walked around constantly
and would
come back in time to speak to nurse. The nurse told us the first
hour that
they had started the blood we banked. Then in the second
hour we were in
the elevator and saw a tech holding a bag of blood. I kiddenly
said that's
not for Samantha Guyette is it? The tech said yes it is.
I knew something
was wrong. The OR nurse confirmed it, she was losing more blood
then
anticipated.
Five hours later both of our parents joined us and finally the nurse
came out
and said they were done and everything was ok. She lost two pints
of blood.
The Dr. came out and said he removed the hardened sutures, but that
he also
did other things to improve her head shape. He molded the back
of her head
and made it round and fuller from the completely flat back it was.
(it is
flat now from her laying all these days, but they assure us it will
bounce
back).
Thank God for Christy Williams sending me a picture of Carlee's zig
zag cut
and hearing from everyone about how much their heads swell. I
was not
shocked at all.
Samantha was out of it for about four days, and also couldnt' see with
her
swollen eyes. On day three they told us that her Hemoglobin,
hemotacrit and
sodium levels had dropped dramatically and she had to have a blood
transfusion. Also she was bleeding from the side of head.
We had to just
watch for days her pillow get bloody, because they didn't want to sew
up
suture because they needed to make sure it wasn't internal. But
Saturday
they did and Sunday her swelling just went away and her levels went
up and
she had color in skin. She also started to eat a little.
We got home Monday. Both of us completely zonked out. Unfortunatedly
she
was in the habit of being woken up every two hours, so she woke up
every two
hours screaming. She was also constipated so we just fed her
up apple juice
and it worked.
She refuses to smile to us. And won't laugh at the things that
made her
laugh. Sometimes it feels like she's a different baby.
But that she slept
throug the night and ate today is all that matters to us.
Maybe the valium
they gave her that they say has something to give them amnesia about
going to
surgery erased all the things she used to like. We'll just have
to find new
things.
While we couldn't go to myrtle beach, I was able to have a little of
what you
felt, with other mothers in the hospital. It was incredible to
finally see
kids with similar features and mothers of these children.
Regarding grandmothers. I think their love is a great benefit
to these
children. Also if they understand what Apert syndrome is and
what to expect
all the better. I got the strength to come on this network and
learn things
that would of been much easier to delute myself about, for the purpose
to
make sure that the grandparents knew what actually was going on.
I don't
know if both sides would of been possesive or anything if Samantha
didn't
have Aperts. But everyone has joined together (holidays included)
since
Samantha's birth. Sunday I took Samantha on a red wagon ride
at hospital to
the cafetaria with my mother and my husbands father. The nurses
commented on
the beautiful relationship of the grandparents.
We got to bring an angel with us. My husband stopped home Tuesday
to get
mail. The morning of surgery I opened up to a adorable picture of Nicki
Miller. That picture came with us for the operation and everyone
to smile at.
Thanks for the advise everyone. Especially about banking blood
(even though
we did have to use one pint of a donors), bringing a pillow for me,
bringing
a picture of Samantha to show those who only saw her with swollen head.
Bringing music and her favorite toys. I had many more things
I wanted to
thank about, but right now am brain dead.
It's a very weird feeling at the hospital. For seven months my
life is to
take care of Samantha. at hospital she was on iv fluids and a
catheter.
But this would give me a chance to walk about hospital and see other
kids and
mothers. But at one point I was only gone ten minutes and Samantha
decided
she didn't want her iv on anymore and took it off. (this was
Sunday when she
got her eyesight back).
I know that the midface is much more serious, and we have hand and cleft
palate surgeries coming, but I'm so releived and feel that a real life
can
start now. This posterier cranial surgery has been a black cloud
over our
lifes. We knew it was coming but also knew that we might not
have much
warning.
Did anyone else feel a great depression once they heard everything was
alright and they could go home. I did and it lasted until this
morning. It
was ok finally to feel the true feelings.
Oh I also wanted to say that because I get pictures from all of you
to show
the grandparents, they now are very supported and helpful with me taking
pictures of Samantha during procedures and now surgeries. I'm
sure others
thought we were nuts posing with our swollen sleeping daughter.
Everyone is
into Samantha having photos should she want to see them, and for us
to be
able to show other parents who will be going through surgeries.
Something we
all would of thought strange seven months ago.
Thanks everyone for getting us through this. I can't imagine if
I didn't
have this network and went to her first surgery without the knowledge
you
gave us.
Love, Lisa Guyette
Daughter is Samantha seven months old
=========================================================================
Date: Thu, 17 Jun 1999
19:33:04 +1200
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From: Howard &
Ann <howrdnan@IHUG.CO.NZ>
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Go for it Jo!!!
Hugs
Ann
=========================================================================
Date: Thu, 17 Jun 1999
03:46:35 EDT
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From: Lisa Guyette
<LAM1126@AOL.COM>
Subject: RE; Prenatal Diagnosis
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Hi,
Like Liz Niemi, I too notcied my daughters head shape and am so surprised
that the techs and Dr. didn't. I had an etopic pregnancy 13 years
ago so the
minute I found I was pregnant went for ultrasound. I had five
more plus an
Amnio. All results were perfect except last that showed Samantha
was breech.
But nothing else.
My ulrasound from day of Amnio my mother who came, was showing everyone.
Waitresses at the restaurant we ate at, even the front office at the
Amnio
place. "Look how beautiful my granddaughter is," I felt
ashamed at myself.
I didn't feel proud of this ultrasound. To me my daughter's side
profile
reminded me of a baby monkey. I never had a child before and
was sure they
all looked like this but it still bothered me. My husband laughted
and
called her cheetah. I showed one friend and they commented that
she looked
like an alien. I never showed anyone again. While I figured
they all looked
like that, deep down I didn't really believe that. And then I
went to a
shower and saw another woman's cute little head shaped four month old
ultrasound. I was bothered, but then pushed the thought really
deep.
On my last ultrasound my doctor told us the shape of her nose and mouth,
how
she had a cleft chin like my husband. When I got my picture I
said to her
doesn't she look grouchy? I asked to see her head again for the
turning of
the breech ultrasound and then the ultrasound night before c-section
(to see
if she fliped on her own after flipping back when they tried to turn
her). I
was so concerned about her face. It was all I could think about.
My mother
and closest friends had to put up with me. I felt I really needed
them to
know that there might be a problem so they wouldnt think I was shocked
at
delivey. I made a comment the night before about her not
having hands or
feet to my mother, or that someone has a child like Cher did in the
movie
Mask (never realizing that her best friend and others from her cranial
group
would be speaking to me within a week).
I was not shocked when she was born. I was upset though that no
one picked
it up. Even with me pointing out obvious things. She looked
exactly like
the head close up ultrasound. And the grouchy look was the brow
bone over
her eyes due to the prominent forehead.
I have recently found out that Amnio doctors should notice that the
fingers
sway together. Samantha's hands were very visible too.
We saw her sucking
her thumb, taking it out, putting it back. Also babies with cleft
palates
have more Amnio fluid than normal due to not being able to suck a lot,
and
finally the shape of the head.
I asked the Amnio doctor if she noticed cleft palates or webbed fingers
and
toes (only because a friend told me to) she said is it in your family?
I
said no and I think she ignored thiese points.
Well the woman who was my gyno said that the Amnio doctor can't spot
everything, but guess what, a patient I know of hers is pregnant with
second
child. My friend asked if she will be going to same Amnio doctor
as first
time. The Dr. said no she missed a lot of key things with some
of her
patients. (she doesn't know we are friends). So a small victory
was acheived.
Do I wish I knew. Yes, then I could of had her therapies set up
and
specialists ready. Maybe it would of caused me great stress I
don't know.
But I do know that the power of knowledge is great. Like watching
my
daughter needing blood during her surgery and swelling up like a mylar
balloon. It wasn't a great shock because I knew about it from
this network
and saw pictures.
But then I have to remember that everything happenes the way they are
supposed to. So not knowing was probably the best maybe for us
to deal with
it. I guess
Love, Lisa Guyette
daughter Samantha seven months old with Apert w/cleft palate
=========================================================================
Date: Thu, 17 Jun 1999
03:49:16 EDT
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Lisa Guyette
<LAM1126@AOL.COM>
Subject: Anyone from Colorado?
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
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Hi
I met a wonderful supportive mother at hospital. Her son has
a cranial
syndrome called Cloverleaf. Her name is Terri and she comes from
Colorado
close to Aspen. She said that she lives in a small town with
two families
with Apert children. I was wondering if they are on the
Listserv? Her son
is named Oliver.
Love, Lisa Guyette
daughter Samantha seven months old with Apert/w cleft palate
=========================================================================
Date: Thu, 17 Jun 1999
08:21:41 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
MIME-Version: 1.0
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Love this weather Joanne.....makes the move all worthwhile!!!!
Jenn
=========================================================================
Date: Thu, 17 Jun 1999
09:15:22 -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: Joni Stephens
<athsteph@ACS.EKU.EDU>
Organization: Eastern Kentucky University
Subject: Re: prenatal diagnosis
MIME-version: 1.0
Content-type: text/plain; charset=us-ascii
Content-transfer-encoding: 7bit
Sherry-
I also had polyhydramnios
and had multiple ultrasounds, but nothing
ever indicated any problems. I got so large that they had to
draw
amniotic fluid out (about 2 liters!) two different times, because my
belly was so tight. Although they did not test the fluid, I was
told
after Joseph was born that it still would not have shown Apert.
I went
into premature labor at seven months, but even so we had no idea Joseph
had a syndrome until he was born. Our doctors had to go look
it up in a
book, because they didn't know what it was.
=========================================================================
Date: Thu, 17 Jun 1999
09:20:12 -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: Joni Stephens
<athsteph@ACS.EKU.EDU>
Organization: Eastern Kentucky University
Subject: Re: Managed care
MIME-version: 1.0
Content-type: text/plain; charset=us-ascii
Content-transfer-encoding: 7bit
Dana-
Good luck to you and your
husband. My prayers are with you.
Joni Stephens
Mom of Joseph, 6
Richmond, KY
=========================================================================
Date: Thu, 17 Jun 1999
09:28:44 -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: Joni Stephens
<athsteph@ACS.EKU.EDU>
Organization: Eastern Kentucky University
Subject: Re: what's up
MIME-version: 1.0
Content-type: text/plain; charset=us-ascii
Content-transfer-encoding: 7bit
Joanne:
Has your doctor mentioned
"depression"? I went through something very
similar to what you are going through when my older boys were very
young
- I slept all the time, cried at the drop of a hat, had no energy,
felt
sick, etc. I was diagnosed with depression, and it was due to
a
chemical imbalance. I was placed on medication for a few months,
and I
have never experienced this problem again. That was about
ten years
ago. Check it out!
Joni
=========================================================================
Date: Thu, 17 Jun 1999
09:46:44 -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: Joni Stephens
<athsteph@ACS.EKU.EDU>
Organization: Eastern Kentucky University
Subject: Re: Samantha Guyette
MIME-version: 1.0
Content-type: text/plain; charset=us-ascii
Content-transfer-encoding: 7bit
Lisa-
I cried when I read your
e-mail. It brought back so many memories
about Joseph's first surgery. He also lost a lost of blood and
they had
to use 2 extra pints of blood (not from our donors). Just want
you to
know Samantha is in our prayers. Also, thank goodness for our
families
- what would we do without their love and support?!
Joni
Mom of Joseph, 6
Richmond, KY
=========================================================================
Date: Thu, 17 Jun 1999
12:50:21 -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: Trevor &
April Blotske <tblotske@ROF.NET>
MIME-Version: 1.0
Content-Type: multipart/alternative;
boundary="----=_NextPart_000_0066_01BEB8BF.F5E5E060"
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Hi Paul!
We are excited to see you on the listserve!
Saige is doing the best =
she's ever been. You'll be shocked at how much she has grown!!!
We =
plan to see you again at the beginning of November when she gets her
=
hands, feet and cleft palate done! We can't wait to see you then!
Keep =
in touch!
April & Saige Blotske
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charset="iso-8859-1"
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=========================================================================
Date: Thu, 17 Jun 1999
12:46:58 -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: Trevor &
April Blotske <tblotske@ROF.NET>
Subject: Re: Anyone from Colorado?
MIME-Version: 1.0
Content-Type: multipart/alternative;
boundary="----=_NextPart_000_0058_01BEB8BF.7CD43960"
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Lisa,
We are so glad to hear that Samantha is recovering
well from her =
surgery! Your letter brought back many of the not so long ago
memories =
of Saige's craniofacial surgery! Praise the Lord that our little
ones =
are still too young, and they won't remember many of the things you
=
described!
I'm so glad you got to meet Terri and Oliver!
We live only about 10 =
minutes from them and about five minutes from the other Aperts boy,
=
Tanner. At this point, I do not believe that Tanner's parents
are on =
the listserve and I'm not sure that they are very interested.
But =
between them and the Herrington's, the support has sure made our lives
=
and the new adjustments that go along with Aperts, a lot easier.
=
Because of these two families, most of the doctors and nurses we deal
=
with already know about these rare syndromes! =20
The mystery is why there are so many birth defects
in our small =
valley. Within only a 10 mile radius and in a small population
of =
people, we have 2 aperts, 1 cloverleaf, 1 melas, and 3 down's... and
=
that's only the people I know so far. I hear there are more.
I'm =
working with our pediatrician to see if we can figure anything out.
You =
see, I'm not convinced that there isn't a cause for Aperts. I
just =
don't think that they have found it yet!
Anyways, congratulations again on a successful surgery.
You have a =
gorgeous little girl!!!
April Blotske
Daughter, Saige, 7 months old
P.S. Thanks for all of the beautiful pictures! Ours are
still coming! =
We were waiting for Saige's eye to go back in from her craniofacial
=
surgery and since then we've had 4 eye surgeries (and one combined
for =
the trach) in only 6 weeks. But they are coming soon, I promise!
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=00
------=_NextPart_000_0058_01BEB8BF.7CD43960--
=========================================================================
Date: Thu, 17 Jun 1999
15:51:02 -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: Tingley <tstctingley@COMWARES.NET>
Subject: Re: Myrtle Beach REUNION!!!!
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We made it back from Myrtle Beach what a wonderful time we had.
Raquel,
you said it well. I miss everybody all ready. I think we
should start our
own town like we talked about Apertville I think it sounds great.
I would
like to thank Don and Cathie Sears also for everything they have done
for
families with Apert and Cranial facial differences. I would be
lost with
out this group of people, It is a wonderful group of friends.
Judy thanks
to you and your husband for the pizza party and Max for the cake. It
was so
nice to see the kids having so much fun with each other. I am
going to
start next week saving for next year. So we will be able to go.
Sorry to
the ones we did not get to say good bye to but we could not find you
and it
was check out time so we had to leave. This was a trip i will
never forget
A WONDERFUL TRIP!!!!!! Raquel tell Mechelle she can come
see us any time
and the family!!!!!!
Mechelle Holt Carroline has had 5 ear infections sents the end
of January
when she had her tubes put in and two weeks ago she had blood coming
out of
her ear for the first time. The ENT is going to take a CT of
her ear on
the 28th of June so we can find out what the problem is. Again
THANKS
EVERYBODY FOR A WONDERFUL TIME!!!!!!!
God Bless
Stephanie and Carroline Tingley
=========================================================================
Date: Thu, 17 Jun 1999
17:41:06 EDT
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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From: GSieb91515@AOL.COM
Subject: Re: Kris' Big Day!
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Ruth--
We want to hear all about your Disneyworld trip! I know how excited
Kris was
to go. Looking forward to the photos.
Brenda
=========================================================================
Date: Thu, 17 Jun 1999
17:41:10 EDT
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
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and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: GSieb91515@AOL.COM
Subject: Re: what's up
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Joanne--
We hope you are feeling better soon. Hang in there. Things
always seem
worse before they get better. We wish you well.
Brenda
=========================================================================
Date: Thu, 17 Jun 1999
17:41:09 EDT
Reply-To: Information exchange and Internet
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Sender: Information exchange and
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From: GSieb91515@AOL.COM
Subject: Re: Butterfly Story
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thanks George for sharing this story. I loved it.
Brenda
=========================================================================
Date: Thu, 17 Jun 1999
20:06:02 EDT
Reply-To: Information exchange and Internet
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Sender: Information exchange and
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From: Patbrat718@AOL.COM
Subject: Re: APERT Digest - 15 Jun 1999
to 16 Jun 1999 (#1999-166)
MIME-Version: 1.0
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Janine,
Thanks, Jasmyn is doing very well at this point. The mid-face
did help the
breathing, but the purpose was for reconstruction. Her doctor's
debated for
awhile whether she would need a mid-face, because she was so borderline,
but
in the end, decided they could improve things. We are so pleased
with the
results at this point. Of course we still have quite a process
to go
through, we have only been distracting for one week.
Thanks so much for your care.
Patti
=========================================================================
Date: Thu, 17 Jun 1999
23:35:33 -0400
Reply-To: Information exchange and Internet
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Sender: Information exchange and
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From: Greg and Sherry
Roehl <gnsroehl@FLASH.NET>
Subject: Re: Samantha Guyette
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Lisa,
I'm so glad to hear that Samantha is home, and seems to be on the mend.
I hope
she recovers quickly, and you get a smile from her soon. I know
how reassuring a
smile can be.
Since Kieran hasn't had any surgery yet, I can only imagine the anxiety
and worry
you've been experiencing. I do want to thank you and everyone
else for sharing
your experiences. It's sure to make it easier on us when it's
our turn to be in
the waiting room.
Try to get some well deserved rest. I do know how tiring hospitals
can be.
Kieran has been in for 37 days in his 3 months of life. And,
yes, I know how it
hits you when it's over. At the time, you need to focus on your
child, but when
it's over it's safe to let all the tension out. And, for me,
that means lots of
tears. They are a catharsis though.
Wishing Samantha a speedy recovery,
Sherry - mom to Kieran-3 mos w/Apert's, Laney-4 w/CVS & Bailey-7
Lisa Guyette wrote:
> Hi everyone,
> It sounds like Myrtle Beach was wonderful. I'm really enjoying
reading about
> it.
>
> It has been a long week. Samantha and I left at 8:00 a.m. Tuesday
to go to
> Children's Hospital about a hour away. She did her preops which
took four
> hours. We stayed at my mother-in-laws that night after visiting
my parents.
> She entertained them all until 10 p.m., like she knew she needed
to calm
> their souls. At 10 p.m. the hospital called and said that they
wanted us
> three hours earlier. Which was 6:30 a.m.
>
> While we were with another family waiting for the liquid valium to
set in we
> spoke to the anestheologist. This was when it all hit.
I started to cry and
> my husband was upset that the Dr. was so obvious about not knowing
anything
> about our child. A nurse told us that they don't until right
before surgery.
> I just wish he couldn't of at least made us think that he was
up all night
> studying her case. The other family were crying too.
This was when our
> seven month old looked around the room in a very loaded state and
said "HI."
> It relieved a lot of tension.
>
> How sad it is when you hand your child to the nurses and watch them
walk
> through the OR doors. I cried everytime I saw another mother
go through it
> while we waited. My husband and I discovered that we really
are compatible.
> We both can't sit in the waiting room. We walked around constantly
and would
> come back in time to speak to nurse. The nurse told us the
first hour that
> they had started the blood we banked. Then in the second
hour we were in
> the elevator and saw a tech holding a bag of blood. I kiddenly
said that's
> not for Samantha Guyette is it? The tech said yes it is.
I knew something
> was wrong. The OR nurse confirmed it, she was losing more blood
then
> anticipated.
>
> Five hours later both of our parents joined us and finally the nurse
came out
> and said they were done and everything was ok. She lost two
pints of blood.
> The Dr. came out and said he removed the hardened sutures, but that
he also
> did other things to improve her head shape. He molded the back
of her head
> and made it round and fuller from the completely flat back it was.
(it is
> flat now from her laying all these days, but they assure us it will
bounce
> back).
>
> Thank God for Christy Williams sending me a picture of Carlee's zig
zag cut
> and hearing from everyone about how much their heads swell.
I was not
> shocked at all.
>
> Samantha was out of it for about four days, and also couldnt' see
with her
> swollen eyes. On day three they told us that her Hemoglobin,
hemotacrit and
> sodium levels had dropped dramatically and she had to have a blood
> transfusion. Also she was bleeding from the side of head.
We had to just
> watch for days her pillow get bloody, because they didn't want to
sew up
> suture because they needed to make sure it wasn't internal.
But Saturday
> they did and Sunday her swelling just went away and her levels went
up and
> she had color in skin. She also started to eat a little.
>
> We got home Monday. Both of us completely zonked out.
Unfortunatedly she
> was in the habit of being woken up every two hours, so she woke up
every two
> hours screaming. She was also constipated so we just fed her
up apple juice
> and it worked.
>
> She refuses to smile to us. And won't laugh at the things that
made her
> laugh. Sometimes it feels like she's a different baby.
But that she slept
> throug the night and ate today is all that matters to us.
Maybe the valium
> they gave her that they say has something to give them amnesia about
going to
> surgery erased all the things she used to like. We'll just
have to find new
> things.
>
> While we couldn't go to myrtle beach, I was able to have a little
of what you
> felt, with other mothers in the hospital. It was incredible
to finally see
> kids with similar features and mothers of these children.
>
> Regarding grandmothers. I think their love is a great
benefit to these
> children. Also if they understand what Apert syndrome is and
what to expect
> all the better. I got the strength to come on this network
and learn things
> that would of been much easier to delute myself about, for the purpose
to
> make sure that the grandparents knew what actually was going on.
I don't
> know if both sides would of been possesive or anything if Samantha
didn't
> have Aperts. But everyone has joined together (holidays included)
since
> Samantha's birth. Sunday I took Samantha on a red wagon ride
at hospital to
> the cafetaria with my mother and my husbands father. The nurses
commented on
> the beautiful relationship of the grandparents.
>
> We got to bring an angel with us. My husband stopped home Tuesday
to get
> mail. The morning of surgery I opened up to a adorable picture of
Nicki
> Miller. That picture came with us for the operation and everyone
to smile at.
>
> Thanks for the advise everyone. Especially about banking blood
(even though
> we did have to use one pint of a donors), bringing a pillow for me,
bringing
> a picture of Samantha to show those who only saw her with swollen
head.
> Bringing music and her favorite toys. I had many more things
I wanted to
> thank about, but right now am brain dead.
>
> It's a very weird feeling at the hospital. For seven months
my life is to
> take care of Samantha. at hospital she was on iv fluids and
a catheter.
> But this would give me a chance to walk about hospital and see other
kids and
> mothers. But at one point I was only gone ten minutes and Samantha
decided
> she didn't want her iv on anymore and took it off. (this was
Sunday when she
> got her eyesight back).
>
> I know that the midface is much more serious, and we have hand and
cleft
> palate surgeries coming, but I'm so releived and feel that a real
life can
> start now. This posterier cranial surgery has been a black
cloud over our
> lifes. We knew it was coming but also knew that we might not
have much
> warning.
>
> Did anyone else feel a great depression once they heard everything
was
> alright and they could go home. I did and it lasted until this
morning. It
> was ok finally to feel the true feelings.
>
> Oh I also wanted to say that because I get pictures from all of you
to show
> the grandparents, they now are very supported and helpful with me
taking
> pictures of Samantha during procedures and now surgeries. I'm
sure others
> thought we were nuts posing with our swollen sleeping daughter.
Everyone is
> into Samantha having photos should she want to see them, and for
us to be
> able to show other parents who will be going through surgeries.
Something we
> all would of thought strange seven months ago.
>
> Thanks everyone for getting us through this. I can't imagine
if I didn't
> have this network and went to her first surgery without the knowledge
you
> gave us.
>
> Love, Lisa Guyette
> Daughter is Samantha seven months old
=========================================================================
Date: Fri, 18 Jun 1999
00:22:30 -0400
Reply-To: Information exchange and Internet
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Sender: Information exchange and
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From: Greg and Sherry
Roehl <gnsroehl@FLASH.NET>
Subject: Procedures & State Standards.
Warning-Long!
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
Hello to all,
Well we've gotten our 2nd, 3rd & 4th opinions, and I'm sooo glad
we
did. It looks like we'll be canceling Kieran's surgery that was
scheduled for June 30th. As you may recall, he's scheduled to
have a
bifrontal craniotomy (sp?) with left, right orbital advancement.
This
was to be performed by Dr. Henry Bartkowski (ped. neurosurgeon) without
the benefit of a plastic surgeon per his way of doing things.
While our
opinions disagree slightly on when he should have any surgery done,
they
all said not to have this procedure at all.
Please let me know if anyone has any knowledge of Dr. Ian Jackson
in
Southfield, Michigan or Dr. Steven Buchman at the Univ. of Michigan.
They were the doctors we saw that we may move his care to.
On Monday, Dr. Jackson seemed shocked that they would remove Kieran's
entire forehead and allow it to regenerate. He said there were
better
options available that would be more appropriate. While he seemed
nice
enough, his personality did not stand out. However, his credentials
sure did. They were impeccable! We'll probably be figuring
out a way
to make him Kieran's doctor, unless we hear anything here that would
make us reconsider.
On Wednesday we saw Dr. Darian, our health care system's choice for
the
craniofacial surgeries. He seemed surprised that Dr. Bartkowski
would
be doing the procedure along. He stated that Bartkowski was new
to the
system, and he did not know him. He did say that he had had a
good
working relationship with his predecessor, but if Bartkowski didn't
ask
for his involvement there was nothing he could do. He disagreed
with
his choice of procedure. When we questioned his experience with
Apert's, he said he works with cranial synostosis occasionally, but
admitted to only handling one Apert's case in the past. He also
said
that he would deny ever having said it, but that Dr. Jackson was superb
and the best anywhere around. While we liked Dr. Darian, his
lack of
experience rules him out as someone we'll entrust our son to.
Today, we met with Dr. Buchman at UofM. He was very forceful in
stating
that we should not allow this procedure. He said that it is outdated
(they haven't done it in at least 15 years!) and that the results did
not come out looking very good. He also said that it was against
the
state's standard of care not to have a plastic surgeon involved that
has
served a fellowship in craniofacial surgery. He went on to say
that he
knew Dr. Darian (again, our health care system's choice that they're
trying to make us accept) both personally and professionally.
He said
that he does not have craniofacial training, and that we can use that
in
our fight with our insurance company. He also advised us to be
very
vocal in our complaints and demands, which we certainly will be.
He
seemed very competent, but Dr. Jackson's experience, coupled with Dr.
Darian's acknowledgment of superiority, will be our choice of doctors.
We'll speak to Dr. Bartkowski tomorrow, but unless he can come up with
some VERY compelling arguments as to why we should allow him to operate,
we'll be canceling the surgery. And, to be honest, I can't think
of
anything he could say at this point that would make me go along with
it!
On to my questions. Finally!
Has anyone had a procedure done in which they removed the entire
forehead? What were the results?
Does anyone know where I can get a copy of Michigan's state standards
and guidelines of medical care? I think I'm going to really need
this
to get approval for switching doctors.
Thanks for reading this far and for any help you can provide!
Sherry - mom to Kieran-3mos w/Apert's, Laney-4 w/CVS & Bailey-7
=========================================================================
Date: Fri, 18 Jun 1999
01:36:16 -0400
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From: Mechelle Holt
<MOM-POOH-of-2@WEBTV.NET>
Subject: HI :)
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MIME-Version: 1.0 (WebTV)
Good for you Joanne! I am glad to hear you are in better spirits!
Thank you Maxine for your prayers! We looked for you before we
left,
but we couldn't find you. I want to thank you for the cakes, and the
Ammermans for the pizza. I am horrible at remembering, when it
comes to
typing! LOL!
We got some news today..... If Courtney's ear infection doesn't
heal up
before the 30th, then her bi-canthel advancement will be canceled.
Our
donated blood will be out of date. :(
I have found that anyone can get a Golden Access pass, who is
"disabled". I got Courtney one. This allows you to get
50% off of some
camping, national parks, and most government funded recreation.
All you
have to do to apply, is go to a ranger station, take your child, and
medical records (confirming your child has aperts and has had, and
will
have many more surgeries) with you. I also heard you can get
discount
tickets in some fun parks (Carowinds, Disneyworld etc.). This
will
allow you to go through the wheel chair line, so you won't have to
wait
in line. Love to all,
Mechelle
=========================================================================
Date: Fri, 18 Jun 1999
07:31:15 EDT
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From: Jenngram@AOL.COM
Subject: Re: Procedures & State Standards.
Warning-Long!
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I definitly think there should be a plastic surgeona nd neurosurgeon
present.
As a matter of fact I didn't think it was done any other way. Glad
you got eh
second opinion.
As for the procedure itself, I guess it varies doctor to doctor, patient
to
patient. Jordan is only 21 mos and when he was 6 mos old, he had the
bifrontal craniotomy and orbital advancement. And he continues to look
really
good. HIs doctor felt that he was not a canidate for the total vault
(the
reshaping of the entire head) for a couple of reasons......the one
that
really sticks out was his concern over the amount of blood that would
be lost
ina 6 month old duriing this procedure. And that he felt if the
back/top of
his skull was growing fine, then he didn't feel the need to subject
him to
the total vault. He has done them before on other patients.......so,
I guess
it just depends. Several children in this group have had the procedure
done.
Go with whoever you trust turning Kieran over to.......that will be
the
hardest of all this
Jenn
=========================================================================
Date: Fri, 18 Jun 1999
08:44:36 +0000
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Comments: Authenticated sender is <jgibson2@POP.erols.com>
From: jgibson2@EROLS.COM
Subject: Re: Procedures & State Standards.
Warning-Long!
In-Reply-To: <3769C986.907C545@flash.net>
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> Does anyone know where I can get a copy of Michigan's state standards
> and guidelines of medical care? I think I'm going to really
need this
> to get approval for switching doctors.
>
I'm sure you'll get other suggestions, but start with the
appeals
process of your insurance company, if they don't respond very
quickly, call your state insurance commission. I don't
believe
you'll find a published standard of care, though. The standard
of
care for most conditions changes as the technology and experience
with treating it change -- that keeps you from having an outdated
standard of care. The term tends to come up in medical malpractice
cases (something you're trying to avoid here) and tends to be
presented to the jury as the opinions of multiple experts in the
field. You've got those now -- when you call the insurance
company
and/or state insurance commission mention the names of the docs
who gave you the opinions. Their credentials should get you farther
than you could on your own.
If you don't get really fast satisfaction (you can't wait
years
for this) call an attorney with experience in handling insurance
problems. Don't get a name from advertising, the best lawyers,
like
the best doctors don't have to advertise. If you know any attorneys,
ask them for names -- it's a specialized field, so they won't be
offended. A friend might offer to make a telephone call or write
a
letter before you consult a specialist -- and that might be enough.
If it's not, you'll need someone whose name alone is enough to
frighten the insurance company into line.
Judy
=========================================================================
Date: Fri, 18 Jun 1999
11:08:59 EDT
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From: Yonstein@AOL.COM
Subject: Re: Samantha Guyette
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Dear Lisa:
I am so happy to hear that Samantha is home and doing ok.
It's such a scary
procedure to go through. This list is what saved me when Emily
went through
hers, too.
Yes, when we took a picture of Emily in the hospital all hooked up and
swollen, I think that the nursses thought it a little odd. You
know what
though, every once in a while we look at it and my husband Brian is
right.
Its a great reminder of how far we have all come since then.
You never know
if Emily will want to see it when she gets older. If she went
through that,
she can get through anything. If we never took it we wouldn't
be able to
make that decision later on whether to show her or not.
As far as the way you are feeling, I remember writing to the list abou
what I
described as surgery let-down. It's such a big build-up and emotional
time
that when it's over and you know everything is ok, you can finally
let
yourself feel all the things you were afraid to beforehand. Take
the time to
do that, you need to.
Glad all is well and hope the recovery continues.
Best wishes,
Janine Krebs
=========================================================================
Date: Fri, 18 Jun 1999
11:16:53 EDT
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From: Yonstein@AOL.COM
Subject: Re: Hello
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Welcom Kieran and the Roehl family. We are the Krebs from New
York. Sorry
it took so long to welcome you. I have trying to catch up on
the mail here.
I have been reading all of your mail and questions. The biggest
and hardest
decision is who to trust with your child.
Get as much information as you can and go with your gut instincts.
I, too,
have never heard of not having a plastic surgeon there as well.
Good luck with your decisions and again welcome.
Janine
=========================================================================
Date: Fri, 18 Jun 1999
20:08:58 EDT
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From: Marilyn Williams
<Mbwill43@AOL.COM>
Subject: Re: Samantha Guyette
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HI LISA, JUST GOT HOME FROM MYRTLE BCH. TODAY. SO HAPPY TO HEAR ALL
IS WELL
WITH SAMANTHA. HOPE I HELPED YOUR MOM A LITTLE. SHE SOUNDS LIKE A WONDERFUL
GRAND MOTHER AND A VERY NERVOUS ONE JUST LIKE MYSELF, BUT I GUESS
THAT'S
WHAT GRAMS DO BEST WORRY ABOUT OUR LITTLE BIRDS, JUST LIKE A MOTHER
HEN. TAKE
CARE AND GOD BLESS YOU AND YOUR FAMILY. HOPE THE BAY GETS BACK TO HER
OLD
SELF SOON. P.S. CARLEE CUT TWO TOP TEETH WHILE ON
VACATION.HER FIRST. LOVE
MARILYN
=========================================================================
Date: Fri, 18 Jun 1999
20:19:43 -0400
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From: Richard Thornquist
<rlthorn@EARTHLINK.NET>
Subject: Re: Samantha Guyette
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Lisa,
Congratulations on Samantha pulling through surgery so well. Andrew
lost alot of
blood his first cranial surgery too. What did they do to the
back of her skull?
Andrew had a flat head when he was born and they rebuilt the back of
skull when he
was only 3 months old. What sutures were fused?
I just had one comment regarding you "watching the nurses take Samantha
to the
OR". I have always taken Andrew to the OR. I think that
can be somewhat
comforting to both you and your child. This last surgery (eartubes)
they gave
Andrew some versid (sp.), which helped alot with him screaming to the
OR. He
didn't scream at all. I just wish they had offered it to us a
long time ago.
With Andrew's first surgery, they told me that they would take Andrew,
and I said
"no" I will take him. It was more or less, I go or he doesn't.
I don't know,
maybe you have reservations about taking Samantha to the OR and seeing
the inside
of the OR, because I know my husband does. It can be very disturbing
when you see
all the instruments (trust me).
Well, I have elaborated more than I expected to. I just hope that
it is your
decision not to take Samantha to the OR and not the hospital telling
you, you
can't.
Lynn Thornquist
=========================================================================
Date: Fri, 18 Jun 1999
20:34:01 EDT
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From: Marilyn Williams
<Mbwill43@AOL.COM>
Subject: Re: prenatal diagnosis
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SHERRY YOU'RE CHILDREN HAVE GREAT NAMES . I LIKE NAMES THAT ARE
DIFERENT.
WHAT IS CVS I DON'T THINK I'VE EVER HEARD OF IT. MY GRANDCHILDREN ARE
JOE
JR., TARA, CODY, DELANEY, AND CARLEE. HOPE ARE YOUR KIDS ARE DOING
WELL. LOVE
MARILYN
=========================================================================
Date: Fri, 18 Jun 1999
20:54:46 EDT
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From: GSieb91515@AOL.COM
Subject: Myrtle Beach
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Hi Gang!
I wanted to write as soon as we got back but had a ton of phone messages
and
work stuff to take care of so everyone has already said my exact thoughts.
I'll repeat them though because we felt the same wonderful emotions.
Raquel
summed everything up perfectly. It was the most inspirational,
heartwarming
and moving experience. We all share a common bond and watching
our children
interact was incredible (even our nonapert kids). Everyone had
a fantastic
time and I was surprised that Jonathan handled the sun as well as he
did.
Needless to say, we will DEFINATELY be back next year and hope that
many of
you will join us.
Max-- I miss our late night chats too and I will smile everytime I think
of
Don's hind legs. Also, thank you so much for bringing your sister.
She was
great and I really enjoyed talking with her.
To the Tingleys, Hills, Krebs and Williams--Sorry we couldn't find everyone
to say goodbye. We barely made our check out and got a late start
after
shedding a few tears with Cathie and Judy. We raced to Raleigh/Durham
airport thinking we were going to miss our flight only to be greeted
by a 2
hour delay. We viewed our video while waiting and shed a few
more tears.
Anyway it was great to meet everyone in person and can't wait to see
you guys
next year.
Mechelle--I don't know if George had told you, but Jonathan had a month
long
bout with ear infections (he does have tubes) just last month and then
had
blood in one ear. Our ENT prescribed cortisone drops and it cleared
up in 2
days. She said to call her from now on instead of doing antibiotics
for a
month prescribed by the pediatrician. Hope all goes well for
Courtney and
you guys. We will keep you in our prayers. We really enjoyed
our visit.
Raquel-- I think all our kids fell in love with your Michelle.
She's welcome
here too anytime. Melissa really enjoyed her company.
Our only regret is that we didn't have more time to visit with everyone.
Maybe next year we can all try to come at the same time! I know
that's
probably not realistic but it would be nice.
Much love and God Bless to everyone!
Brenda
Houston
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Date: Fri, 18 Jun 1999
20:54:50 EDT
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From: GSieb91515@AOL.COM
Subject: Re: Insurance
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We have United Health Care also and they have been great. Our
cranial facial
team is out of our area, but because it is a POS and not HMO they approved
it. We have to get special approval to see some of our doctors
in Dallas but
it's just a matter of a phone call.
Brenda
Houston
=========================================================================
Date: Fri, 18 Jun 1999
23:29:43 -0400
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From: Greg and Sherry
Roehl <gnsroehl@FLASH.NET>
Subject: Back of the head
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Jenn,
All of the doctors we spoke to said that they avoid doing any work on
the back of
the head unless absolutely necessary. They said that the risk
of serious blood
loss was too great, and therefore it was too risky. So, unless
something goes
wrong in the future making the risks worth taking, we won't be doing
anything to
the back of the head.
Sherry - mom to Kieran-3mos w/Apert's, Laney-4 w/CVS & Bailey-7
Jenngram@AOL.COM wrote:
> I definitly think there should be a plastic surgeona nd neurosurgeon
present.
> As a matter of fact I didn't think it was done any other way. Glad
you got eh
> second opinion.
>
> As for the procedure itself, I guess it varies doctor to doctor,
patient to
> patient. Jordan is only 21 mos and when he was 6 mos old, he had
the
> bifrontal craniotomy and orbital advancement. And he continues to
look really
> good. HIs doctor felt that he was not a canidate for the total vault
(the
> reshaping of the entire head) for a couple of reasons......the one
that
> really sticks out was his concern over the amount of blood that would
be lost
> ina 6 month old duriing this procedure. And that he felt if
the back/top of
> his skull was growing fine, then he didn't feel the need to subject
him to
> the total vault. He has done them before on other patients.......so,
I guess
> it just depends. Several children in this group have had the procedure
done.
>
> Go with whoever you trust turning Kieran over to.......that will
be the
> hardest of all this
>
> Jenn
=========================================================================
Date: Fri, 18 Jun 1999
23:54:33 -0400
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From: Greg and Sherry
Roehl <gnsroehl@FLASH.NET>
Subject: CVS definition!
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Marilyn,
Thanks for the compliment on the children's names. I too like
names that are
different, as long as you don't get carried away. ;-) You're
grandchildren have
lovely names.
CVS is Cyclic Vomiting Syndrome, another rare disorder. Our family
seems to
attract them for some reason. :-) It can be difficult to explain.
Basically,
Laney wakes up very pale, tired & listless. Then I know to
expect trouble. She
will begin to vomit uncontrollably, as often as every 10-15 minutes.
She often
requires an iv to rehydrate herself. During an episode she is
very weak. She's
lucky in that hers rarely last longer than a day. When the cycle
breaks, she is
fine. She resumes eating without any problem, and will play nicely.
She may be
a bit tired from the strain on her system, but other than that you'd
never know
she looked like death such a short time before.
I'll quote the NORD web site now for another, perhaps better explanation:
Cyclic vomiting syndrome is a rare digestive disorder that, for the
most part,
affects children. This disorder is characterized by chronic nausea,
vomiting,
extreme fatigue, motion-sickness, abdominal pain and, in some cases,
dizziness
(vertigo) that may last
for hours to days. These episodes of symptoms seem to be similar in
onset and
duration for each affected individual. The exact cause of cyclic vomiting
syndrome is not known.
I recently joined a list serve for CVS as well, where we share information
on
medications, etc. similar to the Apert list serve. Thank goodness
for the
internet! It's been a wonderful source of information and support
as we try to
do the best for our children.
Sherry - mom to Kieran-3mos w/Apert's, Laney-4 w/CVS & Bailey-7
Marilyn Williams wrote:
> SHERRY YOU'RE CHILDREN HAVE GREAT NAMES . I LIKE NAMES THAT
ARE DIFERENT.
> WHAT IS CVS I DON'T THINK I'VE EVER HEARD OF IT. MY GRANDCHILDREN
ARE JOE
> JR., TARA, CODY, DELANEY, AND CARLEE. HOPE ARE YOUR KIDS ARE DOING
WELL. LOVE
> MARILYN
=========================================================================
Date: Sat, 19 Jun 1999
00:36:47 EDT
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From: AOL User <Munch35738@AOL.COM>
Subject: Re: Craniofacial Teams
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Sherry,
Have you tried to get assistance
through the hospital that is
associated with the cranial facial clinic. I had surgery done
for another
facial birth defect and was able to receive funding from the hospital.
This
did not mean I was given a free ride, but it did help defray some of
the
expenses. Also try the state agencies and see if there is financial
help
available. Do you presently go to a clinic and if so you can
ask the social
worker to assist you in the treatment for your child. I truly
understand the
fighting with the insurance company. I have done my fair share
and know it
is not fun. I hope this helps, and good luck. Mary
=========================================================================
Date: Sat, 19 Jun 1999
00:41:05 -0400
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From: Greg and Sherry
Roehl <gnsroehl@FLASH.NET>
Subject: Hands
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Hello everyone,
One of the doctors we saw mentioned that he sends his Apert's patients
to a doctor in Kentucky for their hand surgeries. I also noticed
the
mention of Kentucky here on the list serve. I was wondering what
doctors people may know of or see there so I can begin gathering
information on them.
Since we'll probably be waiting a bit for any cranial surgery due to
our
HMO, I'd like to start planning the next step, Kieran's hands.
Thanks again!
Sherry - mom to Kieran-3mos w/Apert's, Laney-4 w/CVS & Bailey-7
=========================================================================
Date: Sat, 19 Jun 1999
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From: Marilyn Williams
<Mbwill43@AOL.COM>
Subject: Re: Myrtle Beach REUNION!!!
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HI ALL,JUST WANT YOU TO KNOW WHAT A GREAT FAMILY I THINK YOU ARE. I
ENJOYED
MEETING YOU SO MUCH. RAQUAL AND JACK, YU HAVE 4 KIDS YOU CAN BE VERY
ROUD OF.
WE ALL SHOULD BE THAT LUCKY. TAKE CARE. LOVE MARILYN(CARLEE'S GRAM
=========================================================================
Date: Sat, 19 Jun 1999
09:02:22 EDT
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From: Marilyn Williams
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Subject: Re: Grandma
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THANK YOU VERY MUCH, WE ALL LIKE TO BE NEEDED SOME TIMES. LOVE YA!!!!!
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Date: Sat, 19 Jun 1999
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From: GSieb91515@AOL.COM
Subject: Re: HI :)
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Mechelle--
Thanks for remembering about the pass information. We will definately
pursue
that avenue since I'm hoping we will go to Disneyland in the next couple
of
years. Whenever we've been in the past the lines have been horrendous
and
it's usually 100 degrees +. We sure hope Courtney's ear infection
clears up
soon.
Brenda
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Date: Sat, 19 Jun 1999
17:15:20 -0500
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From: Susan Peck <Susan.Peck@PARKVIEW.COM>
Subject: hand doctor
MIME-Version: 1.0
we take our son, ryan, who is 5 with aperts to the shrine
hospital
in lexington kentucky to see dr. louis sheker. he is called the father
of hand surgery as he was the first to be successful with the re-attachment
of limbs. he is absolutely fantastic!! we couldn't be happier with
his
work, ryan's hands are beautiful. ryan also has fused elbows and he
is
contemplating taking ryan's toe joints to make a bendable elbow!! it
will have to wait until his growth plates are smaller, but we are very
excited as it is the first positive thing about elbows we have found.
and as an added plus, it is free through the shrine hospital. his main
office is in louisville but he comes to the shrine hospital the first
friday of every month. i don't know if you are familiar with the shrine
hospitals, but they are incredible!! they make you feel so important!
we have been very pleased. the creations we have seen from dr. sheker
when we have been there are awesome. if you need any more information
on him, let me know!
susan, mother of ryan, holly and jilliann
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Date: Sat, 19 Jun 1999
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From: Marilyn Williams
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Subject: NOTE
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HI ANDREA, HOPE THIS FINDS YOU DOING GOOD. CAN'T WAIT TO SEE YOUR NEW
LOOKS.
TAKE CARE. LOVE MARILYN
=========================================================================
Date: Sat, 19 Jun 1999
20:19:16 -0400
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: Jack and Raquel
<jara1@BELLSOUTH.NET>
Subject: Re: Myrtle Beach REUNION!!!
MIME-Version: 1.0
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Marilyn, thank you very much they are great kids and they as well us
we had a
wonderful time meeting all of you, they are so much looking forward
to next year
when we all meet again. By the way how is Carlee doing??
Her fever never came
back right???
Talk later
Raquel.....
Marilyn Williams wrote:
> HI ALL,JUST WANT YOU TO KNOW WHAT A GREAT FAMILY I THINK YOU ARE.
I ENJOYED
> MEETING YOU SO MUCH. RAQUAL AND JACK, YU HAVE 4 KIDS YOU CAN BE VERY
ROUD OF.
> WE ALL SHOULD BE THAT LUCKY. TAKE CARE. LOVE MARILYN(CARLEE'S GRAM
=========================================================================
Date: Sat, 19 Jun 1999
20:40:47 -0400
Reply-To: Information exchange and Internet
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Sender: Information exchange and
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From: Jack and Raquel
<jara1@BELLSOUTH.NET>
Subject: Photos after surgery
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Janine,
You mentioned on one of your e-mails about taking a picture of Emily
when she was all hooked up and swollen. Well, Jack and I took
many
photos during her stay at the hospital. We have a little album
just
with the photos of her cranial surgery. We have it stored away
and will
not show it to her after and only after every surgery that she has
to
undergo is out of the way. Which we think it will be at around
17 or
so. We definitely want her to see what she and the rest of her
family
went through because she will not remember the majority of those
surgeries if any. There is a decision that she might have to
make some
day of whether or not she wants children of her own and we want her
to
have as much information as possible to help with her decision.
I'm
really not too concerned about that because who knows what modern
science will have in store 20-25 years from now, they might be able
to
detect a problem even before conception, we might even be living in
the
moon.....Any ways my opinion of pictures after surgery it's part of
the
child's life and of something that the child has undergone we need
not
make it something to forget, after all it is done for our children's
well being....just a thought...
Raquel Miller..
=========================================================================
Date: Sat, 19 Jun 1999
20:51:08 -0400
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From: Jack and Raquel
<jara1@BELLSOUTH.NET>
Subject: Re: HI :)
MIME-Version: 1.0
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Boy Mechelle, can we relate to that....I don't remember if I told you
but
Nicki's cranial surgery was cancelled 4 times before it was finally
done and
needless to say we had blood donated for her in three different occasions
but because of her other people were able to use the blood which was
quite a
lot. My job had 55 people donate the first time around in her
name (of
course she would not need that much) Fortunately she ended up using
my blood
and our neighbors blood not much was needed and she was one of the
children
that Jenn mentioned that had the back of the head remodoled but thank
God
and the work of a great surgeon not much blood loss.....Take care and
I hope
Courtney gets better and remember she will have the surgery but at
the right
time......
P.S. My son Steven wants to know when you and him can get together for
another plate of crab legs.......
Love,
Raquel ....
Mechelle Holt wrote:
> We got some news today..... If Courtney's ear infection doesn't
heal up
> before the 30th, then her bi-canthel advancement will be canceled.
Our
> donated blood will be out of date. :(
>
=========================================================================
Date: Sat, 19 Jun 1999
20:25:20 -0500
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From: Judy Amerman
<jamerman@UTI.COM>
Subject: Myrtle Beach REUNION
MIME-Version: 1.0
Content-Type: multipart/alternative;
boundary="----=_NextPart_000_005C_01BEBA91.DA661520"
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Hi gang!
First of all i would like to say that it was a great pleasure to meet
=
each and every one of you! And I truly hope that
you all make it back =
next year with more families to join us.
Nick just had the time of his life by seeing Taylor again and meeting
=
Nicholas Krebs and Melissa Seibert along with getting to play with
=
Teeter again.
i just wish that there was something like this reunion back when Nick
=
was a baby. I was just so isolated back then, but Don and Cathie
took =
that all away. I am sure that all the families with the young
babies =
really learned alot.
To the Miller's, I just wish we could have spent more time with
you, =
maybe next year you can stay a little longer. you have a wonderful
=
family.
To the Tingleys, it was great to see you again. =20
Carroline has grown so much since last August and that Taylor is just
a =
doll!
Max, meeting you and your sister really touched me. Can't
wait to see =
you aain next year. You are truly one sweet lady.
Brenda, your family is super and Jonathon is so sweet and good
natured =
and Melissa did a great job keeping the Vanaken kids entertained.
Janine, you guys are great too. I just love emily's curls
and those =
awesome glasses. and I am glad that our Nick's got along so well.
Be =
sure and bring your mother next year.
To the Williams, it was great to see such a close family and Carlee
is =
a sweetheart.
Mechelle, hope to get to seemore of you next year. for you
and Tim =
being such young parents, your daughter is blessed to have you, as
you =
are to have her.
To the Hill's, CarmenRae is just too cute! And she has one
heck of a =
hair pull. Hope to see you again next year and I know Bill is
ready to =
swing those clubs again with Mike.
Last by not least, to Jenny Brown, you are one exceptional and
=
inspiring person. I admire your spirit and charm. you are
just so full =
of life. And you also have great friends.
Don and Cathie, what can i say. We are family!! this
reunion at the =
beach would have never happened if not for you, I am sure that
you know =
how much you are appreciated! It was great to see you again and
we will =
definitly be back next year. Teeter is almost like a sibling
to Nick =
and a daughter to me. I wish it didn't have to be a year before
i see =
you guys again.
This vacation was just full of smiles and good times. the pizza
party =
was a real ice breaker, which reminds me to tell you all that the =
Sieberts contributed to this also! To those not there,
you should have =
seen the babies and all the kids along with the nonapert kids just
how =
they all just got along. it was great!
The family dinner at Benjamin's Calabash was perfect! We had a
whole =
room to ourselves and after eating we all got to mingle and take =
pictures. Also the Free Merry go round was a big hit with the
kids!
the weather was just about perfect, it rained some on Monday late
=
afternoon and all day Tuesday but other than that it was really good.
some of us went to the Dixie Stampede while we were there. that
would =
probably be a good thing to do again next year, I know that Bill
and I =
enjoyed it and I am sure that everyone else there did too.
We had hall parties too while we were there, some got quite late
but =
the atmosphere and company were fun.
I am also hoping that Cathie will tell you all about Don and the =
treadmill. Unfortunately I missed it, but I was still laughing
so hard =
that I cried when I heard about it!
Poor Cathie, shortly before they left, she was walking out to
the room =
deck to see me. She had been crying and was not seeing too well
and =
walked right into the sliding glass door. I bet she is sore.
I know =
she cried a little harder after that.
i hope that each and everyone of you reading his letter can come next
=
year. the fun and education is well worth the trip.
I took my pictures in and will be sending them out next week.
I am =
getting some more prints made for the photo exchange so you will get
=
them soon.
Oh, I almost forgot, as you know i met with the Hill's and Liz Saylan
in =
Atlanta. I did my minnie Pearl impression to the delight of Mike
Hill, =
to which he has already informed you.
I was just so sorry that Liz couldn't make the beach trip, you would
=
have all liked her, but i am sure she will be there next year.
she is a =
very down to earth and a great person to know.
Well I have been chatty enough for now, if i forget something
, I will =
be back.
Judy Amerman
jamerman@uti.com
------=_NextPart_000_005C_01BEBA91.DA661520
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charset="iso-8859-1"
Content-Transfer-Encoding: quoted-printable
<!DOCTYPE HTML PUBLIC "-//W3C//DTD HTML 4.0 Transitional//EN">
<HTML><HEAD>
<META content=3D"text/html; charset=3Diso-8859-1" =
http-equiv=3DContent-Type>
<META content=3D"MSHTML 5.00.2014.210" name=3DGENERATOR>
<STYLE></STYLE>
</HEAD>
<BODY bgColor=3D#ffffff>
<DIV><FONT face=3DArial size=3D2>Hi gang!</FONT></DIV>
<DIV> </DIV>
<DIV><FONT face=3DArial size=3D2>First of all i would like to
say that =
it was a=20
great pleasure to meet each and every one of you!
And =
I truly=20
hope that you all make it back next year with more families to join=20
us.</FONT></DIV>
<DIV> </DIV>
<DIV><FONT face=3DArial size=3D2>Nick just had the time of his
life by =
seeing Taylor=20
again and meeting Nicholas Krebs and Melissa Seibert along with getting
=
to play=20
with Teeter again.</FONT></DIV>
<DIV> </DIV>
<DIV><FONT face=3DArial size=3D2>i just wish that there was something
=
like this=20
reunion back when Nick was a baby. I was just so isolated
back =
then, but=20
Don and Cathie took that all away. I am sure that all the
families =
with=20
the young babies really learned alot.</FONT></DIV>
<DIV> </DIV>
<DIV><FONT face=3DArial size=3D2>To the Miller's, I
just wish we =
could have=20
spent more time with you, maybe next year you can stay a little =
longer. =20
you have a wonderful family.</FONT></DIV>
<DIV> </DIV>
<DIV><FONT face=3DArial size=3D2>To the Tingleys, it
was great to =
see you=20
again. </FONT></DIV>
<DIV><FONT face=3DArial size=3D2>Carroline has grown so much
since last =
August and=20
that Taylor is just a doll!</FONT></DIV>
<DIV> </DIV>
<DIV><FONT face=3DArial size=3D2>Max, meeting you and
your sister =
really=20
touched me. Can't wait to see you aain next year.
You are =
truly one=20
sweet lady.</FONT></DIV>
<DIV> </DIV>
<DIV><FONT face=3DArial size=3D2>Brenda, your family
is super and =
Jonathon is=20
so sweet and good natured and Melissa did a great job keeping the =
Vanaken kids=20
entertained.</FONT></DIV>
<DIV> </DIV>
<DIV><FONT face=3DArial size=3D2>Janine, you guys are
great =
too. I just=20
love emily's curls and those awesome glasses. and I am glad
that =
our=20
Nick's got along so well. Be sure and bring your mother next=20
year.</FONT></DIV>
<DIV> </DIV>
<DIV><FONT face=3DArial size=3D2>To the Williams, it
was great to =
see such a=20
close family and Carlee is a sweetheart.</FONT></DIV>
<DIV> </DIV>
<DIV><FONT face=3DArial size=3D2>Mechelle, hope to
get to seemore =
of you next=20
year. for you and Tim being such young parents,
your =
daughter is=20
blessed to have you, as you are to have her.</FONT></DIV>
<DIV> </DIV>
<DIV><FONT face=3DArial size=3D2>To the Hill's, CarmenRae
is just =
too=20
cute! And she has one heck of a hair pull. Hope
to see you =
again=20
next year and I know Bill is ready to swing those clubs again with=20
Mike.</FONT></DIV>
<DIV> </DIV>
<DIV><FONT face=3DArial size=3D2>Last by not least, to Jenny
=
Brown, you are=20
one exceptional and inspiring person. I admire your spirit
and=20
charm. you are just so full of life. And you also
have great =
friends.</FONT></DIV>
<DIV> </DIV>
<DIV><FONT face=3DArial size=3D2>Don and Cathie, what
can i =
say. We are=20
family!! this reunion at the beach would have never happened
if =
not for=20
you, I am sure that you know how much you are appreciated!
=
It was=20
great to see you again and we will definitly be back next year.
=
Teeter is=20
almost like a sibling to Nick and a daughter to me. I wish
it =
didn't have=20
to be a year before i see you guys again.</FONT></DIV>
<DIV> </DIV>
<DIV><FONT face=3DArial size=3D2>This vacation was just full
of smiles =
and good=20
times. the pizza party was a real ice breaker, which reminds
me to =
tell=20
you all that the Sieberts contributed to this also! To those
not=20
there, you should have seen the babies and all the kids along
with =
the=20
nonapert kids just how they all just got along. it was =
great!</FONT></DIV>
<DIV> </DIV>
<DIV><FONT face=3DArial size=3D2>The family dinner at Benjamin's
=
Calabash was=20
perfect! We had a whole room to ourselves and after eating
we all =
got to=20
mingle and take pictures. Also the Free Merry go round was
a big =
hit with=20
the kids!</FONT></DIV>
<DIV> </DIV>
<DIV><FONT face=3DArial size=3D2>the weather was just about =
perfect, it rained=20
some on Monday late afternoon and all day Tuesday but other than that
it =
was=20
really good.</FONT></DIV>
<DIV> </DIV>
<DIV><FONT face=3DArial size=3D2>some of us went to the Dixie
Stampede =
while we were=20
there. that would probably be a good thing to do again next
=
year, I=20
know that Bill and I enjoyed it and I am sure that everyone else there
=
did=20
too.</FONT></DIV>
<DIV> </DIV>
<DIV><FONT face=3DArial size=3D2>We had hall parties too while
we were =
there, =20
some got quite late but the atmosphere and company were =
fun.</FONT></DIV>
<DIV> </DIV>
<DIV><FONT face=3DArial size=3D2>I am also hoping that Cathie
will tell =
you all=20
about Don and the treadmill. Unfortunately I missed it, but
I was =
still=20
laughing so hard that I cried when I heard about it!</FONT></DIV>
<DIV> </DIV>
<DIV><FONT face=3DArial size=3D2>Poor Cathie, shortly before
they =
left, she=20
was walking out to the room deck to see me. She had been
crying =
and was=20
not seeing too well and walked right into the sliding glass door.
=
I bet=20
she is sore. I know she cried a little harder after =
that.</FONT></DIV>
<DIV> </DIV>
<DIV><FONT face=3DArial size=3D2>i hope that each and everyone
of you =
reading his=20
letter can come next year. the fun and education is well worth the=20
trip.</FONT></DIV>
<DIV> </DIV>
<DIV><FONT face=3DArial size=3D2>I took my pictures in and will
be =
sending them out=20
next week. I am getting some more prints made for the photo
=
exchange so=20
you will get them soon.</FONT></DIV>
<DIV> </DIV>
<DIV><FONT face=3DArial size=3D2>Oh, I almost forgot, as you
know i met =
with the=20
Hill's and Liz Saylan in Atlanta. I did my minnie Pearl impression
=
to the=20
delight of Mike Hill, to which he has already informed you.</FONT></DIV>
<DIV><FONT face=3DArial size=3D2>I was just so sorry that Liz
couldn't =
make the=20
beach trip, you would have all liked her, but i am sure she will be
=
there next=20
year. she is a very down to earth and a great person to =
know.</FONT></DIV>
<DIV> </DIV>
<DIV><FONT face=3DArial size=3D2>Well I have been chatty enough
for =
now, if i=20
forget something , I will be back.</FONT></DIV>
<DIV> </DIV>
<DIV><FONT face=3DArial size=3D2>Judy Amerman</FONT></DIV>
<DIV> </DIV>
<DIV> </DIV>
<DIV> </DIV>
<DIV> </DIV>
<DIV> </DIV>
<DIV><FONT face=3DArial size=3D2><A=20
href=3D"mailto:jamerman@uti.com">jamerman@uti.com</A></FONT></DIV></BODY>=
</HTML>
------=_NextPart_000_005C_01BEBA91.DA661520--
=========================================================================
Date: Sat, 19 Jun 1999
21:44:44 -0400
Reply-To: Information exchange and Internet
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From: ROBIN L HILL
<CARMENRAE@PRODIGY.NET>
Subject: Myrtle Beach Reunion
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I just wanted to "ditto" everyone's comments on the trip to Myrtle Beach.
It was GREAT! The only regret we had was not getting there earlier,
but we
will be there for the LONG HAUL next year. I can't wait to get
my pictures
back, part of me feels like this whole event was just a wonderful dream.
This listserver and everyone who is part of it have been a true blessing
through all of the rough times this last year and meeting so many of
you in
person was great. I hope more of you can join us next year.
Well, I
better get back to my laundry. It's gonna take a while.
Just wanted to
add a "so long" to those of you we didn't say it to. In a way
I think it
was better not to say goodbye in person. The tears would have
rolled.
Thanks for everything Don and Cathie, you guys are the greatest!
Can't
wait to chat tomorrow night.
Robin Hill
=========================================================================
Date: Sat, 19 Jun 1999
22:41:07 EDT
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From: Cristy Williams
<CARLEE0604@AOL.COM>
Subject: Re: Myrtle Beach Reunion
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We came home Friday from Myrtle Beach. We also had a wonderful time
and were
very grateful to meet all these wonderful families. We weren't able
to
participate in all the activities because Carlee had one day of running
a
high temp. which broke when we got her to the Emergency Room. Also
she cut 2
top teeth, her first teeth. Then late in the week ( i think it was
Weds) she
got a terrible cold. Which I have inherited. HAHA!!! But even
with those
minor complications, it was all worth it. It really is nice to put
a face
with talking on the listserv. It was very inspirational meeting Jenny
and
Max. To see how much ummmmph they got. Everyone else too we are so
glad to of
met you and your families. Also to Don and Cathie, THANK YOU for such
a
wonderful listserv and support group. Thanks for inviting us to Myrtle
Beach.
By the way Cathie is an expert shark tooth finder. Marilyn and I caught
up
with her one day when we were doing the same thing (looking for shark's
teeth) and I'd say she found 10 to our every 1!!!! Here we were straining
our
eyes and picking up every little black object that resembled a sharks
tooth.
Cathie just would grab one and in her cup it would go. I hope to get
that
good one day. We did between my husband, Cody and I manage to get 12
over a 7
day period. Well I am still recooperating from the ride and the cold.
Everyone take care and keep in touch!
Love,
Cristy, Clyde, Cody and Carlee
=========================================================================
Date: Sun, 20 Jun 1999
00:27:07 -0400
Reply-To: Information exchange and Internet
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Sender: Information exchange and
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From: Greg and Sherry
Roehl <gnsroehl@FLASH.NET>
Subject: Re: hand doctor
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Susan,
I am a little familiar with the Shriner's good work. It's an option
we'll
definitely be looking into. A good friend of ours father is very
active with
them and has assured his son that he'll see to it that we get any help
we may
need. I definitely look into Dr. Sheker, too.
Thanks,
Sherry - mom to Kieran-3mos w/Apert's, Laney-4 w/CVS & Bailey-7
Susan Peck wrote:
> we take our son, ryan, who is 5 with aperts to the
shrine hospital
> in lexington kentucky to see dr. louis sheker. he is called the father
> of hand surgery as he was the first to be successful with the re-attachment
> of limbs. he is absolutely fantastic!! we couldn't be happier with
his
> work, ryan's hands are beautiful. ryan also has fused elbows and
he is
> contemplating taking ryan's toe joints to make a bendable elbow!!
it
> will have to wait until his growth plates are smaller, but we are
very
> excited as it is the first positive thing about elbows we have found.
> and as an added plus, it is free through the shrine hospital. his
main
> office is in louisville but he comes to the shrine hospital the first
> friday of every month. i don't know if you are familiar with the
shrine
> hospitals, but they are incredible!! they make you feel so important!
> we have been very pleased. the creations we have seen from dr. sheker
> when we have been there are awesome. if you need any more information
> on him, let me know!
>
> susan, mother of ryan, holly and jilliann
=========================================================================
Date: Sat, 19 Jun 1999
21:41:05 -0700
Reply-To: Information exchange and Internet
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From: rreed <rreed@CABLEONE.NET>
Subject: Hi all, just this and
that.
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
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Hi everybody Max here, I was sitting here reading and realized that
my
family was all out so I thought I would write. First off I want to
wish all
the Fathers Happy Fathers Day. Another thing is I had all my surgerys
done
at Shinners Hospt. for my hands way back in the late 50's and they
were
really wonderful, they were my home a way from home. My parents also
took
pictures of me when I had my surgerys. Iam really glad that they did
take
pictures because now I know all that I went through. But they didn't
take
any pictures of me when I had my facial surgery so I don't know what
I
looked like soon after the surgery. But I do know from friends and
family
that I had a lot of bruesing and swelling. I do wish that they had
taken
pictures but I think they didn't think about it at the time. I do have
before and afters pictures and I love the results. Another thing I
wanted to
mention that is I think parents should be involved walking down to
surgery
with there kids. My parents were involved with all my surgerys, even
my
sister, she was the one who noticed my arms swelling due to the
nurses not
putting the needle in the vein, after my facial surgery. My sister
is the
one who told the night nures that my arms were all swollen. My whole
family
was there every step of the way, My mom was there when I had my daughter
and
she was the one who told the doc. the the baby was breached the tech
who did
the songagram didn't. So I really do think it's inportant that familys
are
there for the little ones.
I also want to say what everybody else been saying
about Myrtle Beach. I
too had a blast and enjoyed very much meeting each and everyone of
you who
were at Myrtle Beach. I learned alot about Aperts that I didn't
know about.
I was glad I came to Myrtle Beach and I know that my sister enjoyed
it too.
She enjoyed seeing all the babys and Teeter and Nick. I think that
this trip
was the greatest and I know I'll be back next year. Thanks Kathy and
Don for
doing Teeters page. It's a life saver. I know I said this once before
but I
just can't help to exspress my feeling. I truely did have a blast.
and I
hope more people will come next year. Well gota go. Mechelle so sorry
to
hear about little Courtney's ears. I'll be praying for her. I hope
she'll
get better soon. Take Care all. I hope Joanne you are feeling better
this
days! Happiness Max
=========================================================================
Date: Sun, 20 Jun 1999
14:07:57 EDT
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From: CatnDon@AOL.COM
Subject: Myrtle Beach Reunion
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Hi everyone!
Well, we're back, after shedding our share of tears! I'll leave
it for
Cathie to tell you all the details of our trip. I wanted to say
we had the
very best of times with all of you who were there.
For those of you who couldn't come, there are now pictures in the clubhouse!
You can go there directly at http://www.apert.org/clubhouse - I'm still
working on the captions but most of the pictures are there. I
still have one
more page to put up. Anyway, I hope you enjoy them!!!
Love always, Don
=========================================================================
Date: Sun, 20 Jun 1999
14:40:13 -0500
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From: Randy & Deb
Picht <rldpicht@INFO.STARPOINT.NET>
Subject: Re: Myrtle Beach Reunion
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Hello All,
I just visited the Clubhouse. What wonderful pictures. It
looks like
everyone had a good time.
I can't get over how so many of the young kids with dark hair look like
Lisa.
Don,
I hope you don't mind if I give the Clubhouse website out to friends
and
relatives. (I will not do it until I hear it is OK with you)
I don't know
if you want this to be private. This way they can also see pictures
of
different people with Aperts. They can see the similarities.
I will wait for a response before I do anymore.
Thanks,
Deb Picht
Mom of Lisa
-----Original Message-----
From: CatnDon@AOL.COM <CatnDon@AOL.COM>
To: APERT@LISTSERV.AOL.COM <APERT@LISTSERV.AOL.COM>
Date: Sunday, June 20, 1999 1:09 PM
Subject: Myrtle Beach Reunion
>Hi everyone!
>
>Well, we're back, after shedding our share of tears! I'll leave
it for
>Cathie to tell you all the details of our trip. I wanted to
say we had the
>very best of times with all of you who were there.
>
>For those of you who couldn't come, there are now pictures in the
clubhouse!
>You can go there directly at http://www.apert.org/clubhouse - I'm
still
>working on the captions but most of the pictures are there.
I still have
one
>more page to put up. Anyway, I hope you enjoy them!!!
>
>Love always, Don
>
=========================================================================
Date: Sun, 20 Jun 1999
21:53:34 EDT
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From: Marilyn Williams
<Mbwill43@AOL.COM>
Subject: Re: Myrtle Beach REUNION!!!
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CARLEE IS DOING FINE CUT TWO TEETH ON THE TOP WHILE WE WERE UP THERE.
CRISTY
IS SICK WITH A SORE THROAT. WE WON'T BE GOING NEXT YR. MAYBE YOU CAN
STOP BY
ON THE WAY UP OR BACK NEXT YR. THAT WOULD BE GREAT. TRY OK LOVE MARILYN
=========================================================================
Date: Sun, 20 Jun 1999
22:07:42 EDT
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From: Marilyn Williams
<Mbwill43@AOL.COM>
Subject: Re: Hi all, just this
and that.
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HI MAX, IT WAS SO GREAT MEETING YOU AND SYLVIA, YOU HAVE A GREAT SISTER
WHICH
I'M SURE I DON'T HAVE TO TELL YOU. TAKE CARE AND LOVE YOU BOTH MARILYN
=========================================================================
Date: Mon, 21 Jun 1999
00:14:59 -0400
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From: Greg and Sherry
Roehl <gnsroehl@FLASH.NET>
Subject: Chat
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I can't seem to remember what time the Sunday night chats are.
When I
checked Teeter's page, I didn't see it listed. It may be there,
and I
just missed it. Can someone let me know so I can try to make
it next
week. Also, does anyone ever pop in there other than Sunday nights?
Thanks,
Sherry - mom to Kieran-3mos w/Apert's, Laney-4 w/CVS & Bailey-7
=========================================================================
Date: Mon, 21 Jun 1999
22:41:14 +1200
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From: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: Re: Photos after surgery
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Greetings
We have a couple of albums with photos of Amy in hospital following her ops, and she often pulls them out and looks through them (she is just over 8yrs old). She will do this of her own accord and now only occasionally asks us questions about it. She knows it is her in the photos, but we aren't sure how much she actually personalises it - it certainly doesn't upset her.
She has talked quite happily about being back in hospital, though when it comes to discussing the actual surgery she isn't so keen on that part.
She also quite contentedly looks through Sargent's books on craniofacial surgery (complete with colour photographs which Howard reckons are "gruesome")
Regards
Ann and Howard
NZ
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Date: Mon, 21 Jun 1999
22:41:16 +1200
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From: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: Not Myrtle Beach Reunion but
NZ
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Well, we didn't make Myrtle Beach, but we did have our get-together in Auckland for afternoon tea yesterday - 7 families getting together. There was nonstop talking, sharing of photos, and kids roaring about all over the place.
Amy and the other Auckland lass with A/s as usual made immediate connection and were inseparable, even though they haven't been together for 8+ months.
There were 3 A/s families, 1 adult with Crouzon, and 3 children with "other" CF conditions.
We had a lot of fun.
If you keep Myrtle Beach going for a few more years, we may just be able to join you - though Howard has his doubts about staying in what sounds such a comfortable place (after 7-8yrs in the outback of Australia he finds hotels too comfortable!)
Cheers
Ann and Howard
NZ
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Date: Mon, 21 Jun 1999
06:49:46 -0500
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From: "Horning, Bob
D (MN14)" <Horning_Bob@HTC.HONEYWELL.COM>
Subject: Re: hand doctor
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>From: Susan Peck <Susan.Peck@PARKVIEW.COM>
>Subject: hand doctor
>ryan also has fused elbows and he is contemplating taking ryan's toe
>joints to make a bendable elbow!!
Susan
This procedure sounds really interesting! What else can you tell
us about
it? Krista (almost 12) also has fused elbows and we've never
heard of
anything that could be done other than breaking and repositioning the
arms
to different (but still fused) positions. One would be bent sharper
to
reach the mouth and head; the other would be made straighter to reach
other
parts of the body. We aren't too sure of that approach.
Thanks.
Bob Horning
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Date: Mon, 21 Jun 1999
07:03:18 -0500
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From: "Horning, Bob
D (MN14)" <Horning_Bob@HTC.HONEYWELL.COM>
Subject: Re: APERT Digest - 17 Jun 1999
to 18 Jun 1999 (#1999-168)
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>From: Greg and Sherry Roehl <gnsroehl@FLASH.NET>
>Subject: Procedures & State Standards. Warning-Long!
>Please let me know if anyone has any knowledge of Dr. Ian Jackson
I think I recall Dr. Jackson's name coming up when Krista was at that
stage.
Was he at the Mayo Clinic 10-12 years ago?
Regarding choice of doctors, here's my 2 cents. Our experience
with doctors
has been to go with the best - i.e., experience. Krista's craniofacial
doc
had a different personality (a bit eccentric) and a not-too-good bedside
manner. The first few years, Mary would refuse to go to his office
without
me along, because he could make us so mad. But he was very very
good.
Sometimes (many times) we just had to grit our teeth and put up with
him.
But by the time he finished his work (he retired about a year ago) we
had
become friends and could laugh off his ways. We even had him
over to our
house for dinner one night after he retired. It was really enjoyable.
So
if I had to choose again, I'd go with experience and a proven track
record
any time over a nice bedside manner. Keep in mind that you won't
be
spending that much time with him compared to the amount of time Kieran
has
to spend with his reconstructed head. A doctor with a personality
that
doesn't stand out is a small price to pay for a really good result
on your
child.
Bob Horning
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Date: Mon, 21 Jun 1999
08:21:40 -0600
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From: cgraham <cgraham@INFOAVE.NET>
Subject: KENTUCKY
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SHERRY,
We also go to Lexington,
KY for hand surgeries. We see Dr. Burgess
and he is very experienced with aperts hands too! We have also
seen Dr.
Sheker and he is great. Both of them are popular and experienced
with
aperts and travel around the world to conferences on hands. Dr.
Burgess
just tried something new with Daryl and it was sucessful, we will be
doing
his left hand in the fall with this tendon transplant. We couldn't
be
happier with him. Which ever you choose if you go to kentucky
you will be
in capable hands. We chose Burgess after we had seen 5 other
hand
surgeons. We were going to see Sheker, but Burgess lives in Lexington,
so
we thought if we had any emergencies he would be there. Sheker
lives in
Louisville. Good luck!!
Denise Graham
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Date: Mon, 21 Jun 1999
08:27:15 -0500
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From: Judy Amerman
<jamerman@UTI.COM>
Subject: Re: Chat
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Sherry,
We usually meet on Sunday nights at 9:p.m. Michigan time. but
if you would
like to chat at any other time that is fine, just post a note to the
listserv telling what time yo will be there and whoever would like
to be
there then will also sign on.
Judy
----- Original Message -----
From: Greg and Sherry Roehl <gnsroehl@FLASH.NET>
To: <APERT@LISTSERV.AOL.COM>
Sent: Sunday, June 20, 1999 11:14 PM
Subject: Chat
> I can't seem to remember what time the Sunday night chats are.
When I
> checked Teeter's page, I didn't see it listed. It may be there,
and I
> just missed it. Can someone let me know so I can try to make
it next
> week. Also, does anyone ever pop in there other than Sunday
nights?
>
> Thanks,
> Sherry - mom to Kieran-3mos w/Apert's, Laney-4 w/CVS & Bailey-7
>
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Date: Mon, 21 Jun 1999
11:53:22 -0400
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From: Richard Thornquist
<rlthorn@EARTHLINK.NET>
Subject: Re: Myrtle Beach Reunion
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Don,
Thank you so much for those pictures, I really enjoyed them. I
am so bummed that
I was not able to join you this year, and I would love to go next year,
but that
might be tough, because my husband is going back to school and I will
be working
full-time. I am not looking forward to working full-time, but
it will be for the
best in the long run. I just hate the thought of leaving my children.
At least
daddy will be the one watching them, otherwise we wouldn't do it.
Thank you again for the pictures.
Lynn
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Date: Mon, 21 Jun 1999
12:11:20 EDT
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From: Edelman Member
<CoH1862@AOL.COM>
Subject: Re: Myrtle Beach Reunion
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What beautiful pictures. i know you had a wonderful time. I hope
if you do
it again next year that we will be able to join you. What beauttiful
kids we
all have.
Diane in Tn.
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Date: Mon, 21 Jun 1999
13:11:20 -0700
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From: rreed <rreed@CABLEONE.NET>
Subject: Fw: Hi there
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-----Original Message-----
From: rreed <rreed@cableone.net>
To: Yonstenin@aol.com <Yonstenin@aol.com>
Date: Monday, June 21, 1999 12:59 PM
Subject: Hi there
>Hi Janine, How you doing? Iam still on cloud nine from meeting all
you
>wonderful people.I haven't stopped talking about my trip. I think
my family
>is getting tired of it though. I really enjoyed metting you and your
mom
and
>little Emily too. I just loved her curls. I hope she keeps them forever.
I
>wish I had mine. But I guess all the surgerys that I had just made
them go
>away, so now I have to perm my hair to get curls. Here is my address
so you
>can send the pictures of my sister and I and of little Emily and I.
1404
Del
>Mar Ave. Modesto Calif. 95350. I'll send you my family pictures as
soon as
I
>can. Hopefuly next month. Take care. Hope all is well in New York?
It's hot
>here in Modesto, Calif. I think our summer is finally here! Love ya
Max
>Janine I wasn't able to send it to you privately so I am sending it
through
the listsever. My computer wouldn't let me send it to your E-mail address.
=========================================================================
Date: Mon, 21 Jun 1999
19:28:04 EDT
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From: Irmocat2@AOL.COM
Subject: Re: Myrtle Beach REUNION!!!
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To the Hills, thanks for coming from Atlanta and it was great seeing
all of
you again. I don't know why Teeter acts up when she is around
Mike, but I
have a feeling that he has something to do with it! Carmen is
so cute!! I
know we will see you again before next year. To the Williams
family, I was
so glad to meet you all and especially Marilyn. She is such a
great Gram!!
Carlee is such a sweetie pie and I hated that she had to go to the
ER at the
beach! At least she got some new teeth out of it! The Tingleys,
Carroline
is such a wonderful, beautiful little girl. I was so glad to
meet all of
you, too. Sorry we didn't get to say goodbye, but I hate goodbyes
anyway, so
how about I just say....see ya next year! Oh boy, the Millers....I
just
loved Raquel. I wished you all could have stayed longer, but
I know that the
kids had to get back to school. And I know you BETTER be coming
back next
year!! I just didn't get enough pictures of Nikki or of Steven,
Michelle or
Erica either. (I wouldn't mind having a few more pics of Jack either
:) he's
a handsome one, now). Judy thanks for inviting your niece and
her family
along. The VanAken's were a wonderful family with great kids
(I still can't
believe she is related to you, though). I hope they also come
back next year.
Well, this letter is long enough to bore even my cows at work, so I
will
close now. Thanks again to all of you for coming. See you
ALL next year!!!
Cathie
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Date: Mon, 21 Jun 1999
19:28:00 EDT
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From: Irmocat2@AOL.COM
Subject: Re: Myrtle Beach REUNION!!!
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Hi everyone!! Sorry it has taken me so long to write since I have
been back
from the beach, but I had to work all weekend. I just finished
reading my
139 messages, too!
Don and I had a wonderful time at Myrtle Beach with everyone.
I just can't
put into words how much I appreciate everyone coming. When I
planned on
going to the beach with Judy Amerman again this year, she said how
much fun
it would be to invite others. I truly did not think things would
turn out
like this. This was one of the greatest experiences of my life.
It was so
nice meeting other families with children like Teeter and what an inspiration
it was to meet Max and Jenny!! It was so nice to be able to sit
and talk to
everyone about how they felt when their children were born and not
be
criticized about it. I have a lot of friends and family, but
no one knows
exactly how I feel except you all (y'all).
I picked up my pictures on Saturday night and have looked at all of
them over
and over. I smile just remembering how much fun I had.
I will have Don scan
them as soon as he can for us. He will be in Atlanta for 3 days
this week,
so it might be next week before they are in the clubhouse. I
am going to
take all my pictures and put them into a scapebook with the pictures
I got
from the picture exchange (by the way, I have only gotten about 15
responses
from the picture exchange....so please, if you haven't sent me your
pictures
yet, I am still waiting :) )
It is so hard for me to write this letter. I have written and
re-written it
a dozen times. I am so depressed that it is all over now, so
I am going to
start making plans for next year to cheer me up! How about we
do it all over
again, but a little later, like this week, next year. I know
a few people
have mentioned that their kids don't get out of school as early as
Teeter
does. I hope we get a huge turnout next year. I promise,
this was a great
bunch of folks!
Again, thanks to everyone for coming. I enjoyed sharing my great
state of
South Carolina with you and all my feelings. Thanks Judy for
the pizza party
idea and for paying for it. Also, thanks for helping with all
the planning,
but we need to start it all over again, you know. Thanks to the
Sieberts for
helping to pay for the pizza, also and for coming all the way from
Texas.
You have a wonderful family and I hope to hunt shark teeth again next
year
with Melissa. Jonathan is such a sweet and handsome little boy.
Max to you
and Sylvia.....what can I say....thanks for the cakes, the wonderful
memories, your loving and beautiful hearts, and for coming all the
way from
California....it was a pleasure meeting you both. Jenny, you
are truely a
beautiful girl with a wonderful spirit, we all loved meeting you and
your
friends (which of course, I forget their names...sorry). To the
Holts, I
can't believe that such a young couple could be such wonderful parents.
I
can only hope to have the kind of patience that the two of you have.
Good
luck to Courtney on 6/30 as she goes in for her cranial surgery again.
The
Krebs from NY were great!! What an accent that Janine has.
And people
thought I talked funny!! :) Emily is a doll baby. (Don enjoyed
watching
Janine try to eat a whole roast chicken with just her hands at the
Dixie
Stampede). Don said he felt like he has known Janine all his
life - I think
he really likes her ;)
This letter is too long, so I will continue it on a page 2.............
=========================================================================
Date: Mon, 21 Jun 1999
20:33:02 EDT
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From: Dana White <Danabrger@AOL.COM>
Subject: Hand Surgery
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Dear Sherry,
Here is some information
re: Kleinert, Kutz and Associates. They
have offices in Louisville and Lexington, KY. I found them on
the web so you
can see a bio of each of the surgeons with their experience, etc.
The sight
also has lots of other information from saftey tips to avoid hand injury
to a
hand library of journals. Dr. Luis Scheker who was mentioned
by Susan Peck
as the surgeon she sees for Ryan is part of this group.
http://www.jhhs.org/hndmicrserv.html
or you can reach them in Louisville with the following information:
Kleinert, Kutz and Associates
Hand Care Center, PLLC
Suite 700
225 Abraham Flexner Way
Louisville, KY 40202
For emergency care or to
schedule an appointment, call
(502) 561-HAND (4263) 1-800-477-4263
(toll free)
Harold E. Kleinert, M.D., FACS
Joseph E. Kutz, M.D., FACS
Thomas W. Wolff, M.D.
Tsu-Min Tsai, M.D.
Luis R. Scheker, M.D.
Warren C. Breidenbach, M.D., FRCS(C)
Steven J. McCabe, M.D
Amit Gupta, M.D.
William L. O'Neill Jr., M.D.
Therese-Anne LeVan, M.D.
Michael J. Moskal, M.D.
Erdogan Atasoy, M.D., FACS
When I had my hand and foot surgeries, I was operated on by Dr. Harold
Kleinert who started this practice. (Please note that my surgeries
were not
as extensive as some of the other kids and there may be other doctor's
recommended to you). I'd say he is getting up there in age and
likely only
teaches at this point. I hear Dr. Kutz is excellent. Warren
C. Breidenbach,
M.D. was the physician repeatedly on the local news when Mathew Scott
received the first hand transplant in the U.S. It would seem
that if they
could attach a donor hand, they could do just about anything!!
Let me know if you are coming to Louisville, I work across the street
from
Dr. Kleinert's office. He would likely remember me.
Take Care,
Dana White
Louisville, KY
(502) 491-2986
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Date: Mon, 21 Jun 1999
22:03:17 -0400
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From: ROBIN L HILL
<CARMENRAE@PRODIGY.NET>
Subject: Re: Craniofacial Teams
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Sherry,
This is Mike. Robin and I have a little one named Carmen Rae.
Carmen Rae
is 17 months old and we were in your shoes like everyone else on the
listserver has been.
I have been in a constant battle with my insurance company and I have
Blue
Cross & Blue Shield. Lucky for us, we have a Cranial Facial
Team at Emory
University that were listed as primary care physicians.
I would suggest that you look into assistance from the Shriners.
You can
find out about the application process at
www.shrinershq.org/Hospitals/eligible.htlm.
Toll Free No: 800-237-5055. You have to get the local temple
to sponsor
you, submit the application and we can all pray for your acceptance.
I know that our Cranial Facial Team performs the surgerys for the Shriners
at
Scottish Rite in Atlanta, GA. The plastic surgeon is Dr. Robert
Wood and
he did such a fabulous job on Carmen Rae's Cranial Vault Remodeling.
He is
assisted by Dr. Petronio, the Pediatric Neurosurgeon. If accepted,
the
Shriners will even pay for your airline tickets.
A guy that works for me is a Shriner and is very involved. He
said if he
can do anything to help get you in the program, just let me know and
he
would see what he could do. If you need to email us direct, we're
at
Carmenrae@prodigy.net.
Good Luck!
----------
> From: Greg and Sherry Roehl <gnsroehl@FLASH.NET>
> To: APERT@LISTSERV.AOL.COM
> Subject: Craniofacial Teams
> Date: Tuesday, June 15, 1999 1:41 AM
>
> Me again! I warned you that I'd have a lot of questions. :-)
>
> This time I'm wondering if everyone works with a craniofacial clinic.
> Our HMO is trying to reassure me that Kieran will get the care he
needs
> through their system, even though they don't have a craniofacial
> clinic. This is contrary to everything I've read and what I've
heard
> from Associations that deal with craniofacial anomalies. It
also goes
> against my gut instinct. Unfortunately, there's no way we could
> possibly afford to pay for everything ourselves, and our current
> insurance won't cover one.
>
> We have 2nd and 3rd opinions scheduled for this week at clinics.
When I
> spoke to managed care today, they agreed to pay for one of the plastic
> surgery opinions, but no more. When I talked about the neurosurgeon,
> they suggested I see another one in their system. I declined,
and will
> pay out of pocket for the remaining visits to the neurosurgeon and
> plastic surgeons affiliated with the clinics. The managed care
worker
> went so far as to suggest that I'll just confuse myself with all
of
> these opinions with all these different doctors. While that
may be true
> to a degree, I feel I need to get all the information that I can
before
> entrusting Kieran to anyone.
>
> Kieran is scheduled to have a bifrontal craniotomy with left, right
> orbital advancement on June 30th, but I'm seriously considering
> canceling it. We'll have to decide when all opinions are in.
The
> scheduled procedure is not through one of the clinics. Although
I like
> the neurosurgeon who would perform the surgery, I wonder if all of
his
> care should go through a clinic. Unfortunately, until
we can change
> our insurance, it's not possible right now, so it would mean a delay
in
> any treatment.
>
> I guess my questions are: is there anyone here that does not receive
> care through a craniofacial clinic? Or has anyone transferred
to one
> after having an initial surgery to release the sutures performed
> elsewhere?
>
> As you can tell, this important decision is weighing heavily right
now.
> I want the best for my baby, but it's so hard to tell what that is.
>
> Thanks for listening and any input you can provide!
> Sherry Roehl - mom to Kieran-3 mos w/Apert's, Laney-4 w/CVS, &
Bailey-7