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?
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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
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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
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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
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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
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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
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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
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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
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and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
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From: Trevor &
April Blotske <tblotske@ROF.NET>
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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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=========================================================================
Date: Thu, 17 Jun 1999
12:46:58 -0700
Reply-To: Information exchange and Internet
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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
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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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