Kia Ora Lynn
>Does anyone think that children at this age have nightmares about the >surgeries?
Amy didn't have problems with nightmares at any stage. Sorry, she had one a month or so back, but it was about a big dog. She took ages to get to sleep in hospital, but I think that was because of all the activity - who wants to go to sleep when all that interesting stuff is going on?
She does, however, like to have her Mum or Dad cuddle with her for as long as possible at night. But I think that is normal for any child.
Cheers,
Ann
NZ
=========================================================================
Date: Thu, 29 Jan 1998
00:42:49 -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: Kerri Hedinger
<khedinger@NS.GEMLINK.COM>
Subject: Re: CHATTANOOGA
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
Content-Transfer-Encoding: 7bit
Denise,
Well, lets see?! If you have a few sanity pills in your pocket
please bring
em'. Boy, the big day is really coming isn't it. Whew!!--time
really flies
doesn't it? I can't think of anything we will need but the support
that you
have given will be a blessing.
Devin's pre-op is a 2 o'clock on the 2-4. We should be in Chatt.
at 12
noon that day. I'm really not sure what time we have to be back
at the
hospital on the 4th but Terri said that they will probably admit him
the
night before the surgery. I will see you on the 5th!!!!
Kerri
Lori,
Can't wait to meet you and Levi!! I think you will be really pleased
with
Dr. Sargent and Dr. Strait. Devin was very fortunate that we
were directed
to them after his first surgery here in Virginia. (Not a good one)
The lord
works in mysterious ways!! We will be staying at the Ronald
McDonald House
also. I will have Terri get with you and let you know which room
we are in
at the hospital as Devin will be in surgery the day of the 5th.
See you
soon!!!
Kerri
-----Original Message-----
From: Chad & Denise Graham <cgraham@INFOAVE.NET>
To: APERT@LISTSERV.AOL.COM <APERT@LISTSERV.AOL.COM>
Date: Wednesday, January 28, 1998 2:54 PM
Subject: CHATTANOOGA
>LORI,
>
> I was wondering if you
knew when you would be getting in to
>Chattanooga on Thursday, Feb. 5? I will be there all day to
be with Kerri,
>during Devin's surgery. I will stay late if you would like to
meet.
>Friday would be busy for you and I know you will want to talk with
kerri.
>It is to hard to drive to Chattanooga two days in a row. Daryl
gets tired
>of his carseat. I would love to meet you and Levi.
>
> Kerri,
>
> I will be there sometime
Thursday morning. If there is anything
>you need, let me know and I will gladly bring it!
>
>
>
Denise Graham
>
=========================================================================
Date: Wed, 28 Jan 1998
22:02:24 -0800
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Robyn Johnston
<robyn@ORDATA.COM>
Subject: Re: Thank you!!!
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Lynn,
Hi my name is Robyn and my daughter Brenna is now 20 months. She
was born
with Crouzons. She has had 4 surgeries so far, and it took us
until the
third surgery to figure out she was having "night frights" as the Dr's
called them, after each surgery. I was amazed that an infant
could have
such a response, but it was consistant after each surgery. She
would wake
every hour or so all night in terror for approx. a month!!! UGGGHHH!
;-/
Finally the last surgery we had, I mentioned it to the surgeon and
the
anesthesiologist and we made the surgery more patient friendly... I
got to
hold Brenna until she was put to sleep, and I was there when she woke
up in
the recovery room. She was pretty messy (bloody) but luckily
I wore dark
clothes. Also I brought her own bottle that she was familiar
with to give
her as soon as she felt comfortable. They also used the preop
med (I think
Versed), less invasive surgical techniques and non-narcotic pain relievers
during recovery. The anesthesiologist said night frights are
common in a
small percentage of children. Anyways, by asking a lot of questions
and
requesting that I remain with her when she was conscious seemed to
do the
trick. After the last surgery, she was ok.
Good luck, Robyn Johnston
Does anyone think that children at this age have
>nightmares about the surgeries? I tend to think so.
=========================================================================
Date: Thu, 29 Jan 1998
10:29:23 -0800
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: "Christine L.
Clark" <apertnet@IX.NETCOM.COM>
Organization: Apert Support & Information Network
Subject: Re: Dr. Upton's Book
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
Beth,
> Does anyone know how to get a copy of Dr. Upton's Book???
The book was put out by WB Saunders Company (800) 654-2452.
The last
time I talked to them in the summer of 1996 I was told that it was
no
longer in print. They only print the Clinics books for 5 years
(this
one being from April 1991). The only suggestion they had was
to go to a
medical book store and see if anyone still had an old copy on the
shelves (probably unlikely at this date but you could try). As
I've said
before, Don Sears is trying to get permission to copy it onto Teeter's
Page. Cross your fingers it all goes well because it has the
most
information about Apert in one book!
>I could call him and ask him.
That might be your best chance. Ask Dr. Upron if you can
photocopy his
book. I know of a few other families that have done so.
> Our son, Tim, is the photo on the inside cover. He is also featured
> in several other places in the book
Is he the little boy on the page facing the preface? There
are two
pictures. One with him smiling and the other one with his hands
up
covering his face. If so, I would be happy to copy any pictures
in the
book of him that I can find and send them to you until you can get
a
copy. Would you like that?
Christine
=========================================================================
Date: Thu, 29 Jan 1998
12:32:51 -0800
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: CCS <yangs@SNA.COM>
Organization: Sac County
Subject: Beare-Stevenson syndrome
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
I have a patient with Beare-Stevenson syndrome who is not doing well.
The pediatric neurosurgeon has treated one other case from Hawaii but
the DNA lab at Johns Hopkins has some doubts about that diagnosis.
Is there anyone on this list who knows of another patient with
Beare-Stevenson that is confirmed by mutation analysis of the FGFR2
gene? In particular how long they survived and what level of mental
disability was present? Feel free to e-mail me directly if you don't
want to post specifics on this list.
Samuel P. Yang, M.D.
e-mail: yangs@sna.com
=========================================================================
Date: Thu, 29 Jan 1998
15:38:40 -0800
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: "Wittenburg,
Mark" <Mark_Wittenburg@TEMPE.GOV>
Subject: Hand surgeon
MIME-Version: 1.0
Content-Type: text/plain
We are in need of a good hand surgeon to complete the seperation of
Jackie's fingers. Her last hand surgeon actually had the nerve
to
move!!!!!!!!!
We were referred to a Dr. Jeffrey Fearon in Dallas, Texas, and want
to
know if any one has had any experience with him. Thanks in advance
for
your input!!!
BTW: we are still on the search for suitable childcare and therapies
due
to temperature/ear infection problems reported in our last post!!!!!
Kathy Wittenburg @ 350-2962
=========================================================================
Date: Thu, 29 Jan 1998
19:25:28 -0600
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: "Judith V. Parks"
<jvparks@MIDAMER.NET>
Subject: JUST YAKKIN'
MIME-Version: 1.0
Content-Type: multipart/alternative;
boundary="----=_NextPart_000_0006_01BD2CEB.A8130F40"
This is a multi-part message in MIME format.
------=_NextPart_000_0006_01BD2CEB.A8130F40
Content-Type: text/plain;
charset="iso-8859-1"
Content-Transfer-Encoding: quoted-printable
Denise,
Hey!! How's Daryl's recovery
coming along? I am so excited to =
meet you guys and Kerri and her family. We will be in Chattanooga
=
around 6:00pm, Depending on how many stops we make. I'm
anxious to =
experience a six hour drive with Levi. He really is a good baby,
=
Usually he falls asleep in the car....we'll see. If you decide
not to =
wait for us we completely understand. We'll just try some other
time.
I got the cranio/facial book today. I got to looking and sat
and =
squalled. It is so amazing. Anyhow...Shannon and I are
already =
impressed with Dr. Seargants work. We will be real dissappointed
if he =
isn't the one. Hope to see yu on the 5th!!!!! =20
Kerri,
Hi. I'm gettin' antsie. I can't imagine what you're
going through =
preparing for surgery. We're just goin' for a consultation!!
Good luck =
and lots of love and prayers to Devin and your family. (in case
I dont =
talk to you before then.) The weekend coming and the first week
of Feb. =
are going to be really hectic. Levi has an ABR and an app. with
the =
Shriners in St. Louis MO. If I don't reply E-mail soon, bear
with.
Lynn
Marion is in Illinois, in the southern part of Il. Ummm...it's
west of =
Harrissburg and east of Carbondale.....almost at the tip of the state.
Right now we are using Dr. Rhinheart of Cardinal Glennon Childrens
Hosp. =
( this is were Levi was flown at birth) We are still in
the process of =
choosing doctors.
Dori,=20
If you're out there...... I am soooooo excited to talk to you!!!
I =
probably will call you here in the next few days!!!! Shannon
and I feel =
relief already, Just to know that your less than an hour away!!!
Call =
me anytime! I can't wait to meet you. Actually the whole
entire family =
wants to meet yuns!! ( I'm tryin to put them off for a while)
I'de like =
to talk to yu myself first. Selfish huh? I thought maybe
when it get =
nice out we could get together and have a big picnic. Family
and =
everyone. I'll holler at yu later. Shannon's hollerin'
Yak at yall later
Lori
------=_NextPart_000_0006_01BD2CEB.A8130F40
Content-Type: text/html;
charset="iso-8859-1"
Content-Transfer-Encoding: quoted-printable
<!DOCTYPE HTML PUBLIC "-//W3C//DTD W3 HTML//EN">
<HTML>
<HEAD>
<META content=3Dtext/html;charset=3Diso-8859-1 =
http-equiv=3DContent-Type>
<META content=3D'"MSHTML 4.71.1712.3"' name=3DGENERATOR>
</HEAD>
<BODY bgColor=3D#f0e8d8>
<DIV>Denise,</DIV>
<DIV> <FONT color=3D#000000 face=3DKids =
size=3D2> =20
<FONT face=3DArial size=3D3>Hey!! How's Daryl's recovery
coming =
along? I=20
am so excited to meet you guys and Kerri and her family.
We will =
be in=20
Chattanooga around 6:00pm, Depending on how many stops we
=
make. I'm=20
anxious to experience a six hour drive with Levi. He really
is a =
good=20
baby, Usually he falls asleep in the car....we'll see. If
you =
decide not=20
to wait for us we completely understand. We'll just try some
other =
time.</FONT></FONT></DIV>
<DIV><FONT color=3D#000000 face=3DKids size=3D2><FONT face=3DArial
=
size=3D3>I got the=20
cranio/facial book today. I got to looking and sat and =
squalled. It=20
is so amazing. Anyhow...Shannon and I are already impressed
with =
Dr.=20
Seargants work. We will be real dissappointed if he isn't
the =
one. =20
Hope to see yu on the 5th!!!!! </FONT></FONT></DIV>
<DIV><FONT color=3D#000000 face=3DKids size=3D2><FONT face=3DArial=20
size=3D3></FONT></FONT> </DIV>
<DIV><FONT color=3D#000000 face=3DKids size=3D2><FONT face=3DArial=20
size=3D3>Kerri,</FONT></FONT></DIV>
<DIV><FONT color=3D#000000 face=3DKids size=3D2><FONT face=3DArial=20
size=3D3></FONT></FONT> </DIV>
<DIV><FONT color=3D#000000 face=3DKids size=3D2><FONT face=3DArial
=
size=3D3>Hi. I'm=20
gettin' antsie. I can't imagine what you're going
through =
preparing=20
for surgery. We're just goin' for a consultation!!
Good luck =
and=20
lots of love and prayers to Devin and your family. (in case
I dont =
talk to=20
you before then.) The weekend coming and the first week of
Feb. =
are going=20
to be really hectic. Levi has an ABR and an app. with the
Shriners =
in St.=20
Louis MO. If I don't reply E-mail soon, bear =
with.</FONT></FONT></DIV>
<DIV><FONT color=3D#000000 face=3DKids size=3D2><FONT face=3DArial=20
size=3D3></FONT></FONT> </DIV>
<DIV><FONT color=3D#000000 face=3DKids size=3D2><FONT face=3DArial=20
size=3D3>Lynn</FONT></FONT></DIV>
<DIV><FONT color=3D#000000 face=3DKids size=3D2><FONT face=3DArial=20
size=3D3></FONT></FONT> </DIV>
<DIV><FONT color=3D#000000 face=3DKids size=3D2><FONT face=3DArial
=
size=3D3>Marion is in=20
Illinois, in the southern part of Il. Ummm...it's west of
=
Harrissburg and=20
east of Carbondale.....almost at the tip of the =
state.</FONT></FONT></DIV>
<DIV>Right now we are using Dr. Rhinheart of Cardinal Glennon Childrens=20
Hosp. ( this is were Levi was flown at birth) We
are still =
in the=20
process of choosing doctors.</DIV>
<DIV> </DIV>
<DIV>Dori, </DIV>
<DIV> </DIV>
<DIV>If you're out there...... I am soooooo excited to talk to =
you!!! I=20
probably will call you here in the next few days!!!! Shannon
and I =
feel=20
relief already, Just to know that your less than an hour
=
away!!! =20
Call me anytime! I can't wait to meet you. Actually
the =
whole entire=20
family wants to meet yuns!! ( I'm tryin to put them off for a =
while) I'de=20
like to talk to yu myself first. Selfish huh? I
thought =
maybe when=20
it get nice out we could get together and have a big picnic.
=
Family and=20
everyone. I'll holler at yu later. Shannon's hollerin'</DIV>
<DIV> </DIV>
<DIV>Yak at yall later</DIV>
<DIV>Lori</DIV>
<DIV> </DIV></BODY></HTML>
------=_NextPart_000_0006_01BD2CEB.A8130F40--
=========================================================================
Date: Thu, 29 Jan 1998
20:52:48 EST
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Sherri Colbert
<JPCSLC@AOL.COM>
Subject: Re: JUST YAKKIN'
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
can someone out there give us the info on the "craniofacial book".
it is news
to us new folks. been working lots of hours at the Home Depot
so I've only be
reading not writing.
Kateys granny Sherri in Clermont FL
=========================================================================
Date: Thu, 29 Jan 1998
21:04:28 EST
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: "<George Siebert>"
<GSieb91515@AOL.COM>
Subject: Re: Surgery's
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
Jenn,
Hang in there. It sounds like you have everything worked out.
Brenda
=========================================================================
Date: Thu, 29 Jan 1998
18:20:43 -0800
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: "Christine L.
Clark" <apertnet@IX.NETCOM.COM>
Organization: Apert Support & Information Network
Subject: Re: Beare-Stevenson syndrome
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
Dr. Yang,
I have no information on this but have forwarded the message to the
cranio-serve listserv to see if anyone on that end can help.
Christine Clark
Apert Support & Information Network
CCS wrote:
>
> I have a patient with Beare-Stevenson syndrome who is not doing well.
> The pediatric neurosurgeon has treated one other case from Hawaii
but
> the DNA lab at Johns Hopkins has some doubts about that diagnosis.
>
> Is there anyone on this list who knows of another patient with
> Beare-Stevenson that is confirmed by mutation analysis of the FGFR2
> gene? In particular how long they survived and what level of mental
> disability was present? Feel free to e-mail me directly if you don't
> want to post specifics on this list.
>
> Samuel P. Yang, M.D.
> e-mail: yangs@sna.com
=========================================================================
Date: Thu, 29 Jan 1998
21:29:16 EST
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: "<George Siebert>"
<GSieb91515@AOL.COM>
Subject: Re: New Member
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
Lynn, Rich and Andrew,
Welcome from the Sieberts, (George, Brenda, Melissa and Jonathan).
Jonathan
is 13 months old and has had 1 cranial surgery and 1 hand surgery to
date with
a second scheduled next month. I was interested in what
you said about
thinning down the fingers. I didn't realize they could actually go
back and
make the fingers look more proportionally sized. Jonathan's pinkie
looks so
much longer than the rest of his hand but we haven't released all the
fingers
yet. It's good to know they can resize the fingers later. The
toe situation
has us confused as well. Our doctor does not advise separating
them if
there's not a problem with walking. Best of luck and we look
forward to
hearing from you more.
Brenda
Houston
=========================================================================
Date: Thu, 29 Jan 1998
18:29:31 -0800
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: "Christine L.
Clark" <apertnet@IX.NETCOM.COM>
Organization: Apert Support & Information Network
Subject: Re: Hand surgeon
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
Kathy,
If you want to come to California I can recommend an absolutely WONDERFUL
hand surgeon at Stanford. That is where Michelle has had all
of her hand
procedures. We split from the team at UCSF when it came to the
hands. I
have also referred many Apert families to him. He can be quiet
when you
first meet him but eventually opens up and is a very nice man.
But it is
the qualifications that you want anyway. He splits nerves and
does
miracles.
Vincent R. Hentz, M.D.
Stanford University Medical Center
900 Blake Wilbur #W1083
Palo Alto, CA 94304
650/723-5256
or
Lucile Salter Packard Children's Hospital at Stanford
Clinic F
650/497-8201 for appointment
He is currently on sabbatical until March but his associate, Amy Ladd,
M.D. is excellent as well. She has assisted on Michelle's surgeries.
Good luck.
Christine Clark
Wittenburg, Mark wrote:
>
> We are in need of a good hand surgeon to complete the seperation
of
> Jackie's fingers. Her last hand surgeon actually had the nerve
to
> move!!!!!!!!!
>
> We were referred to a Dr. Jeffrey Fearon in Dallas, Texas, and want
to
> know if any one has had any experience with him. Thanks in
advance for
> your input!!!
>
> BTW: we are still on the search for suitable childcare and therapies
due
> to temperature/ear infection problems reported in our last post!!!!!
> Kathy Wittenburg @ 350-2962
=========================================================================
Date: Thu, 29 Jan 1998
18:43:13 -0800
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: "Christine L.
Clark" <apertnet@IX.NETCOM.COM>
Organization: Apert Support & Information Network
Subject: Re: An update
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
Marjorie,
So sorry to hear about BJ's set back. I have just a couple of
suggestions, for all it is worth.
It may not help in this instance but are you using Children's Advil
or
Motrin for the fever instead of Tylenol? They really work much
better
than Tylenol in both Michelle and Shannon.
Also, one nonsteroidal anti-inflammatory that really worked for me was
called Toradol (Ketorolac). After my back surgeries and C-sections
they
would put me on a Morphine pump but I would end up with terrible
headaches so they switched me to Toradol and it worked even better
than
the Morphine on the pain and didn't make me feel so drugged either.
As
a matter of fact, I requested it instead of Morphine in subsequent
hospitalizations. It is only this effective in injection form.
It loses
it's umph when it is in pill form, unfortunately. The best part
is it is
not a narcotic. Worth a try????
We're with you every minute and hoping BJ is feeling better soon.
Hang
in there!!
All my best,
Christine
HTeach102 wrote:
>
> I want to say welcome to all the new families that have joined the
list
> recently.
>
> The Update,
>
> BJ's fever is still hanging around. But at
least it has stopped going up,
> he seems to be holding it steady around 103.6, but that is still
very high for
> prolonged time. The doctor has adjusted BJ's ventalator where he
doesn't have
> to work hard anymore, and they have increased the fluids going through
his IV.
> BJ is getting 2 more units of blood tonight and if that doesn't help,
he will
> probably go back to the hospital tommorow. The results of the spinal
tap and
> shunt tap were unconclusive so they did another set today. We should
know
> something in a couple hours. David and I are doing our best to keep
our heads
> above water. But it is getting very tiring for us and BJ. I know
we shouldn't
> get discouraged with all the setbacks, but it is hard to maintain
a positive
> outlook.
>
> David is so much better than me, at
pretending everything is alright. He
> doesn't seem to get upset as much as I do. I keep telling myself
that I have
> to be strong for David, BJ and the kids, but sometimes it is more
than I can
> do. Well I am starting to ramble on again so I will go.
>
> I do have a ? though. I was wondering what types of post surgery
meds and
> other pain meds other Apert's children might have had experience
with.
>
> BJ is on a morphine pump, but it seems that now it doesn't seem to
be helping
> that much. So I am looking for options for a change out pain med.
His pain
> level has been rather high for the past few days, and he winces from
pain
> everytime he is moved. He even cries when we touch him and try to
comfort him.
> So any advice will be helpful.
>
> Take care and kiss your little ones
> Marjorie
=========================================================================
Date: Thu, 29 Jan 1998
18:58:35 -0800
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: "Christine L.
Clark" <apertnet@IX.NETCOM.COM>
Organization: Apert Support & Information Network
Subject: Re: JUST YAKKIN'
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
Sherri,
> can someone out there give us the info on the "craniofacial book".
See my previous e-mail to the list re: Dr. Upton's book.
Unless, you
are talking about the craniofacial book from the Tennessee Craniofacial
Center. That can be obtained from them at:
975 E. Third St.
Chattanooga, TN 37403
or
from their web site at:
http://www.erlanger.org/cranio
Christine Clark
Apert Support & Information Network
=========================================================================
Date: Thu, 29 Jan 1998
21:59:51 -0500
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Mark Smith <dsprado@PENN.COM>
Subject: Middle Ear bones
MIME-Version: 1.0
Content-Type: multipart/alternative;
boundary="----=_NextPart_000_003E_01BD2D01.393A9640"
This is a multi-part message in MIME format.
------=_NextPart_000_003E_01BD2D01.393A9640
Content-Type: text/plain;
charset="iso-8859-1"
Content-Transfer-Encoding: quoted-printable
I've been searching the Web for some good sites on middle ear bones.
=
Any suggestions? =20
=20
Due to the fact, Kayla middle ear bones are fused she wears hearing
=
aids. I thought I read some where that there is surgery that
may =
correct the middle ear and restore hearing? Has anyone
else ever read =
that surgery can be done ? or Has anyone had experience
with having =
surgery on there middle ear? =20
Thanks in Advance
Michele (pa)
------=_NextPart_000_003E_01BD2D01.393A9640
Content-Type: text/html;
charset="iso-8859-1"
Content-Transfer-Encoding: quoted-printable
<!DOCTYPE HTML PUBLIC "-//W3C//DTD W3 HTML//EN">
<HTML>
<HEAD>
<META content=3Dtext/html;charset=3Diso-8859-1 =
http-equiv=3DContent-Type>
<META content=3D'"MSHTML 4.72.2106.6"' name=3DGENERATOR>
</HEAD>
<BODY bgColor=3D#ffffff>
<DIV><FONT color=3D#000000 size=3D2>I've been searching the Web
for some =
good sites=20
on middle ear bones. Any suggestions? </FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2> </FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2></FONT> </DIV>
<DIV><FONT size=3D2>Due to the fact, Kayla middle ear bones are
fused =
she wears=20
hearing aids. I thought I read some where that there is surgery
=
that may=20
correct the middle ear and restore hearing? Has
anyone else =
ever=20
read that surgery can be done ? or Has anyone had
experience =
with=20
having surgery on there middle ear? </FONT></DIV>
<DIV><FONT size=3D2></FONT> </DIV>
<DIV><FONT size=3D2>Thanks in Advance</FONT></DIV>
<DIV><FONT size=3D2></FONT> </DIV>
<DIV><FONT size=3D2>Michele (pa)</FONT></DIV>
<DIV><FONT size=3D2></FONT> </DIV></BODY></HTML>
------=_NextPart_000_003E_01BD2D01.393A9640--
=========================================================================
Date: Thu, 29 Jan 1998
22:31:03 +0000
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: "J. G. Lindamood"
<chanan8@JUNO.COM>
Hello everyone!
I have been out of the loop lately, sorry. I'd like to welcome
all of
the new family members! I don't want to list everyone in case
I forget
someone.
I'm Joanne, I will be 33 in a couple of weeks, and I have had the
pleasure of living this life with Apert's. I believe it was a
gift from
God to create me like this, otherwise I would have never known the
deepest of compassions, the widest of loves and the sincerest of
gratitude. Acceptance would only be a word to me and not my mission
in
life. I would probably look my challenges in life with attitude
rather
than a growing experience. Had I not been created with Apert's my
relationships might not have been as genuine. I might have mirrored
my
parents and brothers and missed out on a lot of gifts only those of
us
with physical challenges can appreciate. My days could have come
and
gone without one consideration about how another person feels.
I would
not have experienced the surge of energy I feel when I can genuinely
smile at someone and see in their eyes the acceptance of that smile
in
spite of our differences.
I hope all of you can experince the things I have, if not within your
own
lives, through the lives of your children.
Joanne, in Ohio
_____________________________________________________________________
You don't need to buy Internet access to use free Internet e-mail.
Get completely free e-mail from Juno at http://www.juno.com
Or call Juno at (800) 654-JUNO [654-5866]
=========================================================================
Date: Thu, 29 Jan 1998
22:24:06 -0600
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Chad & Denise
Graham <cgraham@INFOAVE.NET>
Subject: craniofacial book
MIME-version: 1.0
Content-type: text/plain; charset="us-ascii"
Sherry,
You can get Dr. Sargent's
book by calling Terri Farmer at the
Tennessee Craniofacial Foundation at 1-800-418-3223. She
will get the
info she needs and send one to you. The book is great!
Denise Graham
=========================================================================
Date: Thu, 29 Jan 1998
20:22:06 -0800
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: "Christine L.
Clark" <apertnet@IX.NETCOM.COM>
Organization: Apert Support & Information Network
Subject: Nightmares
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
Lynn,
> Does anyone think that children at this age have
> nightmares about the surgeries?
Michelle had dreadful nightmares
after her first few surgeries.
She also wouldn't let me put a shirt over her head when I was dressing
her without gasping for breath. I figured she was thinking about
the
face mask. After that, I insisted that she be given a pre med
that is a
hypnotic. She usually gets Versed. It acts within about
15 minutes.
The child gets either very goofy or sleepy so they need to be held.
The
last thing they remember is being in your arms. They do not remember
going to the OR or having the mask over their face. It worked
miracles.
Often, that was all she needed to sleep to have her MRI's done,
too. I
have recommended it to many people who have reported success after
having the doctors use it for their children, too. I insist that
she be
given the meds AND they are in full effect BEFORE I let them take her.
I
don't care if they are in a hurry - she comes first and it has been
worth
it. You may want to ask your anesthesiologist next time.
Good luck.
Christine Clark
Apert Support & Information Network
=========================================================================
Date: Fri, 30 Jan 1998
00:04:58 EST
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Lynn Thornquist
<Thornq@AOL.COM>
Subject: Re: Nightmares
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
Christine,
Your e-mail jogged my memory a little bit. For Andrew's first
cranial and
first hand surgeries, he was not given anything for memory, but when
it came
time for his second cranial surgery, the doctors gave him a drug in
the ICU
that "kills" his short term memory. Have you ever heard of that
or is Versid
(sp.) that drug. Reason I ask is because, I have asked the anaesthesiologist
is he could "knock" Andrew out a little before they take him to the
OR and
they told me that it was not advised. They said that it was too
risky because
of Andrew's narrow airways and if anything went wrong they didn't have
the
equipment in the pre-op room to assist. I did however, go to
the OR room with
Andrew and talked to him while they put him to sleep (it was very hard).
Do
you or anyone else have any suggestions?
Thank you and have a good night.
Lynn
=========================================================================
Date: Fri, 30 Jan 1998
08:29:05 EST
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Jennifer Graham
<Jenngram@AOL.COM>
Subject: Re: JUST YAKKIN'
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
I aM sure you will get several replies regarding the book by Dr.
Sargent, but
anyway..heres a phone # you can call and request one 1-800-418-3223
or
423-778-9192. Its a great book, and Densies little guy is a famous
guy w/ his
hands pictured under the Apert catagory. Be forewarned..its graphic..my
mom
had a hard time w/ it..I just keep sayin, "Well, now that doesn't look
like it
feels very good"..But regdless, its an excellent reference and I often
bring
it w/ me to our reconstructive doctor to ask questions and so he can
show me
which procedure he'll perform. He LOVES the book as well..and is getting
a
copy for himself and his resident!!!
Anyway, get yourself a copy!!! Hope the # helps
Jenn (St. Pete, FL)
=========================================================================
Date: Fri, 30 Jan 1998
08:35:34 EST
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Jennifer Graham
<Jenngram@AOL.COM>
Subject: Re: An update
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
Marjorie,
My husband told me he too has seen good results w/ Toradol..both at
work adn
on himself..he has severe vertebral problems and takes it when he has
to
instead of hydrocodone which knocks hm on his butt..The toradol should
manage
the pain, yet keep him alert. It may be worth a shot!! Hope the tough
guy is
feeling better,ya'll are getting some rest, and the other kids are
holding up
as well. I imagine this must be hard on them too!!! Good luck and we're
thinking of you.
Jenn (St. Pete, FL)
=========================================================================
Date: Fri, 30 Jan 1998
08:49:04 EST
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Jennifer Graham
<Jenngram@AOL.COM>
Subject: Re: Nightmares
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
Lynn,
Versed is a memory blocker thatbasically "kills" the short term memory.
My
husband refers to it as concious (sp?) sedation..I know we used it
a lot where
I used to work for people who were claustrophobic and were having heart
scans
done (they have to slide in a CT like contraption)..It wears off quickly..and
they don't remember a thing.I've had it before for a few outpatient
procedures, wisdom teeth and minor stuff..I personally love it..but
then, for
me, nothing is as wonderful as that feeling of falling asleep!! I told
my
anesthiologist I was bringing her home w/ me..she says thats why shes
called
Dr. Feelgood!!! ha!! I think next time Jordan has a 3-D CT I am going
to ask
them to use it. I was told the same about Jordans upcoming surgery..they
won't
give it to him pre-op (LOVELY..nice people..hahaha), and after his
surgery
they want him to be alert (OUCH) to make sure hes ok, then they will
give him
versed and morphine for the night..My fathe-in-law is an anesthiologist
and
some of his partners deal w/ pediatric pain so hes researching some
stuff and
coming down for the surgery ....just so I have someone "on my side"
who
actually knows about pain..just incase. Like everyone else, I don't
want this
to be too negative of an experience since their are so many more too
follow..
Jenn (St. Pete, FL)
=========================================================================
Date: Fri, 30 Jan 1998
06:40:04 -0800
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Penny Halverson
<phalvers@U.WASHINGTON.EDU>
Subject: IRC's Chat Tonite! 01/30/98
Comments: To: Crouzon Syndrome Support Group & Other Craniofacial
Anomalies
<crouzon@u.washington.edu>
MIME-Version: 1.0
Content-Type: TEXT/PLAIN; charset=US-ASCII
Hi everyone!!!
Tonite is ApertCrouzon Chat Nite!! So let's get acquainted with
each
others. :-) Keep in mind that some people will show up
alittle later
than the time started. IRC Chat is OPEN ALL NITE so stay
as long
as you like. Please join us!!! :-)
Date To Meet On: Friday, January 30, 1998
IRC Server: ChatNet (Any locations)
Port Setting: 6667
Channel: #ApertCrouzon
Time: 11:00pm AT/10:00pm ET/9:00pm CT/8:00pm MT/7:00pm PT/5:00pm HT
If you haven't had a chance to download the mIRC for Windows 3.x and
95
or IRCle for MAC users. Please go to download from one of these
below.
To check out the mIRC Help Page for Windows 3.x and Windows 95
users at:
http://www.qni.com/~kristib/mirc1.html
You can download mIRC 5.31 there.
For MAC Users: Please download IRCle at:
http://www.amug.org/~ircle/
If anyone needs help or have questions on accessing the chat on ChatNet.
please email to Kristi at either:
mailto:kristib@qni.com
Or for a quicker assistance, you can reach Kristi on AOL IM (AOL Instant
Messenger) and she will be available to assist you - see below:
Kristi's screen-name: LilOneB (anytimes)
You can download the AOL IM (AOL Instant Messenger) at:
http://www.aol.com/aim
You don't have to be a member to join AOL IM and it is free!
AOL IM is an one to one online chat.
Everyone is welcome!!!
Thanks and please join the fun!!!!
Hugs, Penny
http://www.earthlink.net/~hwy2heaven/
mailto:hwy2heaven@earthlink.net
mailto:phalvers@u.washington.edu
=========================================================================
Date: Fri, 30 Jan 1998
09:46:07 -0500
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Don Sears <dsears@SCRS.STATE.SC.US>
Subject: Craniofacial book
MIME-Version: 1.0
Content-Type: text/plain
I'm sure many of you are wondering about the nature of the book
mentioned recently on the listserv. What we are referring to
is the
April 1991 issue of a medical journal, Clinics in Plastic Surgery.
This
issue of this periodical focused just on Apert and is considered by
most
to be the most comprehensive medical data available. After trying
to
get an original, I found that, as Christine pointed out, that
W.B.Saunders Co. only keeps these in print for 5 years.
To make a very long story short, after quite a few calls and some
begging letters, the Permissions coordinator at Saunders convinced
her
management that they should make an exception in this case to their
"no
Internet publication" policy and allow us to reproduce the issue on
our
website, subject to the following conditions:
No photographs to be reproduced
No illustrations to be reproduced
Consent must be obtained from each author.
The information in the articles is great, but the pictures and
illustrations really tell the story. I'm not sure how helpful
the text
alone will be. It seemed more important at the time because I
didn't
have over 100 friends at the time with whom I could discuss Apert
issues! I still would like to republish these articles, but I'll
have
to say it's moved down the priority list somewhat. If it weren't
a
copyright violation, I'd say the best bet for those of you who want
a
copy is to get with privately someone who has an original (several
of
our subscribers do) and arrange to have the book copied. Of course,
as
a responsible Webmaster, I can't suggest that!
The articles are very technical and go into the specifics of each aspect
of treatment. For a listing of the articles and 'request for
reprint'
addresses, please see http://www.apert.org/articles.htm.
Have a great weekend everyone! ---Don
=========================================================================
Date: Fri, 30 Jan 1998
10:33:05 EST
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Jennifer Graham
<Jenngram@AOL.COM>
Subject: Re: weight after surgery
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
Hello everyone, first let me thank you again for the words of
support and
encouragement as we draw closer to Jordans surgery. I feel if we can
get
through this next week, the actual surgery should be a piece of cake.
Anyway, I was wondering about weight loss after surgery. From what I've
been
told they plan to start feeding him by the 2nd day post op, but I have
to
doubt the appetite is the same. Any experiences??? Silly question..but
how
much of a weight loss did ya'll experience..kids not parents (don't
I
wish..that would be a positive outcome for sure) and how long until
they
gained it back and were eating 'normally" again. We chose to delay
giving
Jordan baby food until after surgery, but we don't want to wait too
long after
that. Hes up to 15 lbs so the weight loss isn't a big deal..we're just
curious
about what to expect..so I don't become overly paronoid...key word
is
overly..me being paronoid is a given.
Thanks in advance
Jenn (St. Pete, FL)
=========================================================================
Date: Fri, 30 Jan 1998
14:30:30 EST
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Janine Krebs
<Yonstein@AOL.COM>
Subject: Re: weight after surgery
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
Hi Jenn,
i'm typing with emily in my arms, so that's why you're getting all lower case.
anyway, she h
=========================================================================
Date: Fri, 30 Jan 1998
14:35:23 EST
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Janine Krebs
<Yonstein@AOL.COM>
Subject: Re: weight after surgery
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
oops. sent the mail by accident.
anyway, she had her surgery in october. she had actually remained
the same
weight in the beginning because of the swelling. they started
feeding her
formula I think on the third day. she had the ventilator in for
two days
because she developed atelectasis (sp.) in her lungs, which they said
is very
common.
The only problem after coming home was that she did have very loose
bowel
movements for approx. two weeks afterward, but she took her bottles
fine. She
wasn't on food yet because she was 3 months old. I attributed
the bowels to
the anesthesia, pain meds and sterroids she was getting.
Hope this helps and you're doing ok. I was a basket case before
her surgery.
Now it kind of seems like a dream to me.
Janine
=========================================================================
Date: Fri, 30 Jan 1998
14:38:23 EST
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Janine Krebs
<Yonstein@AOL.COM>
Subject: pituitary gland
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
Since Emily was born I am finding out that there is really no part of
her body
that is not affected in some way. However, I haven't heard anything,
until
now, about the pituitary gland. A genetics doctor said that it
has to be
watched very carefully in Aperts because it will affect all of the
growth.
I know what it does, but is it a problem usually with Aperts?
Any info would
be appreciated.
Thinking of the Harmons and hoping BJ is doing ok.
Hoping everyone who had surgery is recovering well.
Janine
=========================================================================
Date: Fri, 30 Jan 1998
15:06:36 EST
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Jennifer Graham
<Jenngram@AOL.COM>
Subject: Re: pituitary gland
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
Janine,
Thanks for the info..and no one has even mentioned pituitary problems.
I was
told that Apert kids may be somewhat shorter due to the part of chromosone
10
thats affected, but I was even told thats not an absolute. Although
I will say
Jordan is not as tall as I thought he should be at 24.5 in.(at 4 mos),
but the
pediatrician said he was taller than they expected based on his birth
height..Who kows, my husband made me put up the growth/weight tables
a long
time ago b/c he was a small baby and they predicted him to be like
5'5 and hes
a normal 6'0. anyhow, I'll be interested to see what everyone else
has to say.
Also, anyone have problems with baby zits? I know this has been talked
about
regarding the older kids, but how was the skin as infants? Jordan has
the
worst case of blackheads on his shoulders and upper arms and back of
his neck.
His face is ok, but I figured he was a little young for a) clearsil,
and/or b)
a trip to the dermotoligist.
A rather minor issue in the skeme of things at this moment, but I was
just
curious
Thanks in advance
Jenn
=========================================================================
Date: Fri, 30 Jan 1998
17:01:27 EST
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Andrea Gartner
<LUVS2WRTE@AOL.COM>
Subject: Apert & Cataracts
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
Hello everyone,
Im not sure if this topic was addressed before.
Today I went to the eye doctor and he noticed that I had cataracts.
Im only
20 years old!! I was wondering if anyone also had this situation,
or knows or
has gone through the procedure to correct them. I have to go
back in 6 months
to check if their still there. It isn't a big problem, but it's
a warning.
Hope everyone is ok.
-Andrea
=========================================================================
Date: Fri, 30 Jan 1998
16:31:17 -0600
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Kathy Sahlhoff
<sahlhoka@UWEC.EDU>
Subject: Re: Apert & Cataracts
In-Reply-To: <1a271685.34d24db9@aol.com>
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
My Joseph, who is nine years old, has some scarring on his eyes that
seems
to be related to the fact that sometimes his eyes do not shut totally
while
he is sleeping. That was something we were told to watch for
when he was
young. The doctor has suggested we put in artificial tears in
the morning
and afternoon and a salve at bedtime. Joseph is scheduled for surgery
to
raise his lower lids slightly to avoid further scarring. (The
good news is
he has 20/20 vision!)
On an unrelated subject, does anyone have a good suggestion for getting
socks and shoes on? Somehow pulling those socks up is just not
something
Joseph has mastered with his thumbs.
Thanks.
Kathy
At 05:01 PM 1/30/98 EST, you wrote:
>Hello everyone,
>
>Im not sure if this topic was addressed before.
>
>Today I went to the eye doctor and he noticed that I had cataracts.
Im only
>20 years old!! I was wondering if anyone also had this situation,
or
knows or
>has gone through the procedure to correct them. I have to go
back in 6
months
>to check if their still there. It isn't a big problem, but it's
a warning.
>
>Hope everyone is ok.
>-Andrea
>
>
=========================================================================
Date: Fri, 30 Jan 1998
13:57:03 -0800
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: "Christine L.
Clark" <apertnet@IX.NETCOM.COM>
Organization: Apert Support & Information Network
Subject: Re: Nightmares
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
> he was not given anything for memory, but when it came
> time for his second cranial surgery, the doctors gave him a drug
in the ICU
> that "kills" his short term memory. Have you ever heard of
that or is Versid
> (sp.) that drug.
Yes, Versed and another drug,
Ketamine, are used for this
purpose. As stated in the Physicians' Desk Reference:
"Versed is indicated for
preoperative sedation (induction of
sleepiness or drowsiness and relief of apprehension) and to impair
memory
of perioperative events"
Ask your anesthesiologist next time. With children they usually
administer these meds by mouth (liquid), nasally or rectally.
One
warning though. It tastes TERRIBLE. You need to get it
down in the
first try because once they get a taste of it they get a bad case of
locked lips, hah! I usually have the nurse put it in a syringe
and come
from behind Michelle and stick it in her mouth and hold her lips
shut until she swallows, before she knows what happened. She
is getting
smarter now and remembers it and will spit is clear out if given the
chance. A trick you can use with babies when giving medication
is to
blow quickly and forcefully in their face as soon as you put the
medication in. They instinctively swallow (and usually get a
little
startled). It is very effective though.
Good luck.
Christine
=========================================================================
Date: Fri, 30 Jan 1998
18:46:44 -0600
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Chad & Denise
Graham <cgraham@INFOAVE.NET>
Subject: HAND SURGEON
MIME-version: 1.0
Content-type: text/plain; charset="us-ascii"
Carol,
We use Dr. Burgess in Lexington,
Ky. That is where the Shriners
is, and also his private practice. The first thing you have to
do is get
some paperwork from your local shrine tempel. They will help
you if you
need it. If you do not know of a shriner to sponsor you, the
tempel will
get one for you. Then they go through and make sure it is something
that
the hospital can help(which Nick's is). They will make you an
evaluation
appointment. You need to request which doctor you want to see
if you want
a specific one. If you need any more info, feel free to call
or e-mail.
Denise Graham
=========================================================================
Date: Fri, 30 Jan 1998
18:54:17 -0800
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Robin MacDonald
<macdonal@GOLDEN.NET>
Subject: socks and shoes
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
Our daughter is 5 and has seemed to master socks reasonably well. She
is
steadfast in her desire to "do it myself". Shoes, well that is a
different story. We buy shoes with velcro tabs instead of laces..that
we
she has at least a reasonable chance of doing up the shoes.
=========================================================================
Date: Fri, 30 Jan 1998
21:18:43 EST
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Lynn Thornquist
<Thornq@AOL.COM>
Subject: Re: weight after surgery
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
Jenn,
Your not being overly paranoid. Andrew did not loose but 1 pound
and at 3
months old and weighing in at about 14 pounds, it was not an issue.
Andrew
wanted to suck down food almost immediately of being awake. I
unfortunately
couldn't give him all that he wanted at first, but we gradually increased
and
he was fine. I wouldn't worry about the weight loss. Don't
sweat the little
stuff, you just cause more anxiety for yourself and it isn't worth
it. Just
keep focused on the coming home aspect and everything will be just
fine.
Lynn
=========================================================================
Date: Fri, 30 Jan 1998
21:21:36 EST
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Lynn Thornquist
<Thornq@AOL.COM>
Subject: Re: weight after surgery
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
Jenn,
Janine just reminded me, its been a while. Andrew also had loose
bowels after
coming home, but that was because of the antibiotics he was taken for
infection (just incase). Andrew only had his ventilator tube
in for 24 hours
and was eating normally by the second day after removal of the ventilator
tube.
Lynn
=========================================================================
Date: Fri, 30 Jan 1998
21:27:02 EST
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Lynn Thornquist
<Thornq@AOL.COM>
Subject: Re: pituitary gland
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
Jenn,
Its me again!!! Andrew had the same type of acne as an infant.
I don't
believe it all went away until he was about 6 months old. Dr.
Upton told us
that acne is very common in Apert children, especially boys.
They get it on
their arms, face, and back. Just don't put lotion on it.
Andrew has not had
any problems since except for two little zits popped out a couple of
days ago.
A bit of wonderful news, Andrew took his first steps yesterday.
What a proud
mommy I am. Did anyone else out there have kids that walked late
(Andrew
being 17 months)? Could it be attributed to the Apert feet?
This is my last note to you tonight Jenn.
Lynn
=========================================================================
Date: Fri, 30 Jan 1998
21:27:04 EST
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Marianne Camous
<Camous@AOL.COM>
Subject: Re: weight after surgery
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
In a message dated 98-01-30 10:33:25 EST, you write:
<< From what I've been
told they plan to start feeding him by the 2nd day post op, but
I have to
doubt the appetite is the same. Any experiences??? Silly question..but
how
much of a weight loss did ya'll experience..kids not parents
(don't I
wish..that would be a positive outcome for sure) and how long
until they
gained it back and were eating 'normally" again. >>
Getting an appetite back has never been an issue!! Evan always seems
to want
to make up for lost time. There may be a pound or two fluctuation (some
related to fluid shifts due to IV fluids, etc) and my advice is "don't
ask,
don't tell" If Jordan gaets his appetitie back within a few days- all
will be
fine. Also, once he starts taking food/milk/formula by mouth be sure
they
discontinue the IV fluids- then he'll continue to eat more on his own.
One of
the remarkable things i recall from these "big" surgeries is the visible
fluid
shifts - one minute he'd have puffy feet and everything else, then
he's pee
like the proverbial racehorse (diaper change after diaper change) and
get rid
of the fluid. Kidneys are wonderful things!!
On thought about pre-op meds. I've had anesthesiologists give
me the same
line about using "Versed" being potentially dangerous, etc. We had
enough
experience the be able to unequivocally state that he does much better
post op
when he's had it pre-op. I explained this to my surgeon the next time
around
and got his support and we were back with the Versed. Now if anyone
tries that
line, I will politely but firmly request another anesthesiologist and
if one
is not available, postpone the case. Luckily I had one of the attending
anesthesiologiats tell me about "emergence psychosis" which is
often obviated
by pre-meds. Since this seems to have been the case with Evan
I have a
stronger case. I wonder if some of the issue is related to anesthesia
residents or attendings who are not pediatric subspecialists. I have
found
that in Children's hospitals, peds anesthesia folks who just
work with kids
are much more amenable to this. Heck they use versed in many Emergency
rooms
when kids get stitches!!
OK- off my soapbox!!
Ciao-
Marianne
=========================================================================
Date: Fri, 30 Jan 1998
21:37:50 EST
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Beth Tolson <ETolson643@AOL.COM>
Subject: Re: Dr. Upton's Book
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
Christine,
I would love the photos and I will also try to contact Dr. Upton as
well. We
haven't seen Dr. Upton in quite some time because we have put the hand
stuff
on hold. Thanks so much for your offer!!
Beth
=========================================================================
Date: Fri, 30 Jan 1998
21:47:25 EST
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Lynn Thornquist
<Thornq@AOL.COM>
Subject: Helmets
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
To everyone,
I'm writing to tell everyone my experience with helmets and to make
all
parents with upcoming surgeries aware. I'm not trying to scare
anyone, just
giving a little advice.
When Andrew had his first cranial surgery, he was going to need a helmet
to
protect the new bone in the back of his skull. Unfortunately,
I could not
hold him until we had the helmet (that was four days later).
But before the
helmet came, and the gauze had come off his head, there was a gauze
strip over
the suture line and I noticed a little bit of black under that strip.
I asked
the nurse if that was bruising or dried blood, and she told me that
it was
probably dried blood and I left it at that. So we got the helmet
and went
home. When we were home, my mothering instincts kicked in.
Andrew's head did
alot of sweating in that helmet, which looked just a like a hockey
helmet. I
of course made a point to give his head a little breather occassionally
(against everyone elses better judgment, and I'm glad I did).
It was not
perfectly formed to the shape of his skull; they stuck white inserts
in to
keep it from sliding (not what I expected). Anyways.....10 days
after surger,
we went back and saw Dr. Mulliken in his office. The helmet was
taken off and
so was the gauze strip. The look on Dr. Mulliken's face was obviously
not
good. Because of the helmet (I'm sure of it) and the sweat combined,
caused
Andrew to have Necrosis around the suture line. The leftside
was 4 inches at
its longest point and 1 inch at its widest point. The rightside
was not as
bad. We had one long road ahead. We needed to keep it dry
until it started
to crack. Dr. Mulliken was worried that the necrosis had gone
all the way to
the bone (causing yet another surgery). But with alot of help
from Andrew's
nurse, Dr. Mulliken, and his nurse Dottie we were able to get it healed.
But
there is still a large scar but Dr. Mulliken has cut out some during
his last
two surgeries.
This was an experience I wish I did not have to go through (listening
to my
baby scream while doing wet to dry dressings). I just wanted
to make everyone
with upcoming surgeries aware.
Just to let you know, Dr. Mulliken was furious about the helmet, it
was not
what he had wanted. Needless to say, I did not see the resident
who ok'd it
again.
I hope I did not add another thing to worry about, just keep your eyes
open
and question anything you don't understand, and ask the surgeon the
same
questions (I wish I had).
Good luck!
Lynn
=========================================================================
Date: Fri, 30 Jan 1998
21:48:00 EST
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Beth Tolson <ETolson643@AOL.COM>
Subject: Re: New Member
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
Bob
That is the hard part; Tim doesn't give any indication about whether
or not he
feels it is worth it. I think he likes the changes in the way
he looks but it
is hard to get much beyond that. His new looks were a significant
change; we
all had to make an adjustment to his new face. We always thought
he was cute
the way he was even though his face is much more "normal" now that
he has had
his midface advancement. The psychological aspects have come
into play more
and more as he has grown older. He is such a good kid; he makes
it easy to
forget the tough times.
Beth
=========================================================================
Date: Fri, 30 Jan 1998
21:49:24 EST
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Lynn Thornquist
<Thornq@AOL.COM>
Subject: Re: Dr. Upton's Book
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
Beth and Christine,
I will be seeing Dr. Upton on February 4 for Andrew's surgery, so I
can ask
him then. I will let you all know what I find out.
Lynn
=========================================================================
Date: Fri, 30 Jan 1998
22:06:59 -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: foster <foster@ICONTECH.COM>
Subject: Aperts and Cataractstears
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Andrea,
When Billy was about two months old I read about different symptoms
for
aperts in some material that I got from Nord. One of the symptoms they
talked about was the possibility of cloudiness of the lens or cataracts.
Billy has had problems with his eyes because as was said before
his eyes do
not close when he sleeps. He gets natural
tears three times a day and Celluvisc, which is a thicker lubricant
and bed
time. He goes to the eye doctor every other month .Anyway one of the
things
I talked to the doctor about was Cataracts.He said even though billy
does
not have them now he could get them in the future. He said if surgery
for
them was ever needed it is a pretty simple . It is done on an out patient
bases and can now be done by laser. He said they use to haveto wear
a patch
for awhile after but, now it is not needed. If you have them on both
eyes
they will only usually do one at a time. Sorry to hear you have to
deal with
this problem, But hopefully it will be taken care of shortly and fairly
painlessly.
Karen
=========================================================================
Date: Fri, 30 Jan 1998
22:36:37 -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: foster <foster@ICONTECH.COM>
Subject: Sorry
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Hi everyone,sorry about sending the same messages twice.... I don't
know why
but I thought I had'nt sent it.
Anyway Billy's surgery on the 3rd is now a big maybe?????? He has a
slight
cold and is taking an antibotic and something to dry him up since Wednesday.
Although his nose is running clear and has no fever. His surgery is
suppose
to be at7:15 on Tuesday, all depends on if its better by Monday. All
the
waiting for the surgery has now changed to waiting to see if there
will be a
surgery. Of course what ever is best for him. Keeping fingers crossed.
Karen
=========================================================================
Date: Sat, 31 Jan 1998
00:15:49 EST
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Marianne Camous
<Camous@AOL.COM>
Subject: Re: Nightmares
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
In a message dated 98-01-30 18:47:27 EST, you write:
<< It tastes TERRIBLE. You need to get it down in the
first try because once they get a taste of it they get a bad
case of
locked lips, >>
"hiding" it in a few cc's of cranberry juice sometimes helps. Sometimes
the
nasal route is easier when they're really little. Even with the teeny
tiny
nasal airway, this can be done as it is absorbed through the mucous
membranes
really quickly.
Marianne
=========================================================================
Date: Sat, 31 Jan 1998
00:29:17 EST
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Lynn Thornquist
<Thornq@AOL.COM>
Subject: Re: Sorry
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
Your not the only one Karen.....
When Andrew was scheduled to have the plates removed from his head,
he ended
up coming down with a bronchial infection and we had to postpone his
surgery
as well. Alot of waiting and stressing just to be told "no".
Good luck.
Lynn (Holliston, MA)
=========================================================================
Date: Fri, 30 Jan 1998
21:28:08 EST
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Janine Krebs
<Yonstein@AOL.COM>
Subject: Hand Surgery
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
This may sound like a silly question, but when you all talk about hand
surgeons, is that the plastic surgeon or the orthopedic surgeon or
somebody
totally separate from that? Also, do they always have to take
skin from the
baby's groin for the skin graft or can it even be from another person?
We haven't started to discuss Emily's hand surgeries yet as we are kind
of
taking things one step at a time, since that's the only way I seem
to be able
to keep up with all of this. Right now we are still on the ears.
She had the
tubes put in and already had some pus oozing out. I had to take
her back
today to have it suctioned out and she's on an antibiotic for an ear
infection. I probably didn't get her plugs in tight enough for
her bath.
When we did discuss her hands, it was with her plastic surgeon,
although I do
have an appt. next week with the orthopedic surgeon for a check-up.
Thanks in advance for the info.
Hope everyone has a good night.
Janine
=========================================================================
Date: Sat, 31 Jan 1998
01:59:46 -0600
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Chad & Denise
Graham <cgraham@INFOAVE.NET>
Subject: walking/acne/hand surgeon
MIME-version: 1.0
Content-type: text/plain; charset="us-ascii"
Lynn,
Daryl didn't walk till he
was 20 months old. I was getting a
little concerned, but not much. He could walk from here to china
if he had
a couch to walk along side of. I held a Reeses Peanut butter
cup out for
him and here he come. I haven't been able to stop him since!!ha
ha
Jenn,
Daryl had acne all over his
chest, shoulders, back, and arms at
about 4 weeks old. He kept it until he was around 6 months.
They
eventually clear up. I kept him clean and dry and he finally
got rid of
it.
Janine,
The hand surgeon is your
orthopedic surgeon. I do not beleive you
can take skin graft from someone else. I beleive that it has
to be their
own skin from a place without any hair growth. The scars seem
big at
first, but after a while they fade. By the time they are teenagers
I think
you won't even hardly be able to see it.
Denise Graham
=========================================================================
Date: Sat, 31 Jan 1998
14:43:54 EST
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Jennifer Graham
<Jenngram@AOL.COM>
Subject: Re: Hand Surgery
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
Janine,
I now for Jordan, his hands wll be done by his plastic/reconstructive
surgeon..the same on whose doing his other procedures. I know a lot
of people
go w/ a separate person fo rthe hands, and we were referred to the
Miami Hand
Institute as an option, but we like our reconstructive surgeon so much,
and
are impressed with his results..heads as well as hands..so for us its
best to
stick with this one doctor. Now if he ever felt there would be problems,
he'd
defer the hands to Miami. Thts just us though..I think you'll find
everyone
does it different..if you want any more opinions I can give you the
name of
our doctor, or you can get ahold of some good ones in Miami at the
Hand
Institute down there.
Good luck w/ the ears, I am NOT looking forward to that day at all!!!
Jenn (Tampa/St. Pete, FL)
=========================================================================
Date: Sat, 31 Jan 1998
13:50:03 -0800
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Joseph Chan <jchan7@PACBELL.NET>
Subject: Re: Hand Surgery
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
Janine Krebs wrote:
>
> This may sound like a silly question, but when you all talk about
hand
> surgeons, is that the plastic surgeon or the orthopedic surgeon or
somebody
> totally separate from that? Also, do they always have to take
skin from the
> baby's groin for the skin graft or can it even be from another person?
> She had the
> tubes put in and already had some pus oozing out. I had to
take her back
> today to have it suctioned out and she's on an antibiotic for an
ear
> infection. I probably didn't get her plugs in tight enough
for her bath.
Hi!
Roxy had her fingers released by the late
orthopedic surgeon who
was a hand specialist, Dr. Charles Ashworth (Los Angeles). Skin
was
taken from her groin area as well as from her wrists.
Even with the tubes, Roxy would get that oozing
from her ears.
Occasionally, she'd need oral antibiotics/ear drops/even a wick put
into
her ear to soak up the fluid. So don't blame yourself, sometimes
these
things happen.
Rose in California
=========================================================================
Date: Sat, 31 Jan 1998
17:17:29 EST
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: "<George Siebert>"
<GSieb91515@AOL.COM>
Subject: Re: Helmets
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
Lynn,
We had an experience with the helmet deal also. Ours was actually
called a
DocBand (the only one with a medical patent). Anyway it was supposed
to help
shape the head after surgery. We wore it for a couple of months
and realized
his head was actually growing taller. We did however, see lots
of babies that
were wearing the docband due to positional flat heads. It really
worked for
these kids. Unfortunately, we learned it does not work for kids
with cranial
syndromes. I'm sorry to hear about your experience. Hopefully
it will help
some other parent out there trying to the best for their child based
on advise
from their doctor.
Best Wishes,
Brenda
Houston
=========================================================================
Date: Sat, 31 Jan 1998
17:19:02 EST
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: "<George Siebert>"
<GSieb91515@AOL.COM>
Subject: Re: Dr. Upton's Book
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
Ditto! We would love to have a copy of Dr. Upton's book if possible.
Let us
know if you find out how we can proceed.
Brenda Siebert
=========================================================================
Date: Sat, 31 Jan 1998
18:39:57 EST
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Jennifer Graham
<Jenngram@AOL.COM>
Subject: Re: Dr. Upton's Book
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
Keep me updated about Dr. Uptons book as well. I would love a copy to
add to
mt growing collection. Pretty soon I may have a library!!
Jenn (Tampa/St. Pete)
=========================================================================
Date: Sat, 31 Jan 1998
21:36:55 +0000
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: "J. G. Lindamood"
<chanan8@JUNO.COM>
Hello!
I finally have some concrete job search news, although not good.
I
received a letter, several weeks after the interview (with the
organization that focused on giving motivational assemblies to schools)
to politely tell me I was not selected for the position. This was the
only iron in the fire, so I'm back to square one. Bummer.
I keep
telling myself I won't be out in the cold come February 20, but I'm
still
worried. I can't live with the minimal salary much longer.
Bills are
adding up and FAST! I will let you all know if anything develops!
Joanne, in Ohio
_____________________________________________________________________
You don't need to buy Internet access to use free Internet e-mail.
Get completely free e-mail from Juno at http://www.juno.com
Or call Juno at (800) 654-JUNO [654-5866]