=========================================================================
Date:         Sat, 31 Jan 1998 21:14:05 -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: Helmets
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"

Lynn,
just a quick question.  Sorry, I might have missed it earlier if you
mentioned it.  How old was Andrew during the first cranial advancement -
when he needed a helmet?  Brenna did not recieve a helmet for her
advancement - but she was not mobile either, so the Dr wasn't worried.  She
will be getting another cranial advancement in the future and now she is
mobile.  I suspect she will have to wear it this time.  Thanks for the
info.  I do appreciate the warning in advance.

Robyn Johnston

At 09:47 PM 1/30/98 EST, you wrote:
>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:         Sat, 31 Jan 1998 21:30:24 -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: weight after surgery
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"

Hi Jenn,

We are thinking of you as you are preparing for Jordans surgery.  Your
questions sure bring back many memories.  I was very anxious too.

>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.

Anyways regarding weight,  Brenna was borderline low weight baby.  She was
below the normal "percentile charts".  She had her first surgery at 4
months to improve her breathing so she could gain some more weight  before
her cranial advancement.  She had her cranial advancement 2 months later.
Anyways, after her Cranial advancement, she was taking her bottle on the
third day after surgery.  Not sure if she was hungry or the bottle just
comforted her, but she slowly resumed her appetitite.  She was kept on IV
until she was unquestionably stable with taking a bottle.  Even though she
was low weight, she did fine.

We chose to delay giving
>Jordan baby food until after surgery, but we don't want to wait too long
after
>that.

WE were like you in that we waited to start solids until after the surgery.
 We tried a little rice cereal mixed with milk before but we didn't push
the issue.   After her surgery, she really took off with the solid foods.
Starting with the rice cereal and within the month, sweet potatoes, green
beans and other vege's.  She was more than ready.  I have some great pics
of her with sweet potatoes all over her face.  A messy face only a mother
can appreciate :-)

Anyways, good luck.  We will be thinking good thoughts for you all as you
prepare for the big day.  Keep us updated!

Hugs, Robyn J
Eugene, OR
 
 

At 10:33 AM 1/30/98 EST, you wrote:
> 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.
>
 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. 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:         Sun, 1 Feb 1998 00:53:14 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: Hand Surgery
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit

Janine,

Andrew's hand surgeon is a plastic surgeon.  He is not an orthopedist, I
believe that orthopedist's only deal with bone respectively.  Andrew has a
separate orthopedist.

Lynn
=========================================================================
Date:         Sat, 31 Jan 1998 21:48:46 -0800
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Lark Jarvis <lark@INVOLVED.COM>
Subject:      Re: Job stuff
In-Reply-To:  <19980131.213803.10198.1.chanan8@juno.com>
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"

Hi Joanne,

I'll be sending positive thoughts your way--I know a little bit about where
you're coming from . . . My personal situation, job-wise, is that I keep
ending up in very ambiguous job situations--meaning, there's been no real
contract, only hastily-made verbal agreements, and the company is "in
transition", in start-up, or something . . . So I never know where I stand,
how my performance is being monitored, or IF it even is--if I'm a
short-timer or a long-timer or somewhere in between, or if the company
*could* keep me even if they wanted to . . . I mean, I know the  90's are
forcing employees to be flexible and go with the flow, but after about 3 of
the same kinds of deals, I NEED STABILITY! Enough already!

So, I hear ya!  I guess when you're dealing with non-profits,
grant-dependent entities, that sort of thing, you can't get blood out of a
turnip--if money's not there, it's just not there . . . but, it sure makes
for an unstable feeling if you're looking at a pile o' bills!
Good luck!!!!! :~o
Lark
(who probably would've applied for a cabin-girl position on the Titanic if
I'd been around back then . . . . .)
=========================================================================
Date:         Sun, 1 Feb 1998 10:56:12 EST
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Robin Moreno <TheMorenos@AOL.COM>
Subject:      Re: Hand Surgery
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit

Janine-
Hi! I'm Robin.  A very good friend of mine has a child with Apert's. She just
finished her second hand surgery.  All fingers are now seperated. The surgeon
took skin from the baby's abdomen to graft to the newly separated fingers,
both times. So she has two "C-section" scars. The baby did great, and both
parents have survived. She is such a precious little girl, with the most
wonderful dispostion.  This list is a wonderful source of information and
support.

More later.. robin
=========================================================================
Date:         Sun, 1 Feb 1998 13:26:50 -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:      Billy's Big day
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"

Hello to everyone. Well it looks like Billy will be o.k. for surgery. I
guess that means we are ready. He has to be there Tuesday at 6 and surgery
is sheduled 7:15. A.M. So I will let you all know how everything goes. Good
luck to anyone else facing surgery while he is gone.
Karen
=========================================================================
Date:         Sun, 1 Feb 1998 14:22:10 EST
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Jennifer Graham <Jenngram@AOL.COM>
Subject:      Re: Job stuff
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit

Joanne,

Good luck w/ the job search..and have I mentioned how much I HATE looking for
work????? ha!ha!ha! It'll happen..just takes time!! Hopefully sooner than
later!!

Good Luck
Jenn(Tampa/St. Pete)
=========================================================================
Date:         Sun, 1 Feb 1998 14:24:16 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:         Jennifer Graham <Jenngram@AOL.COM>
Subject:      Re: Billy's Big day
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit

Gosh Karen..time flies eh? Best wishes to Billy and of course to ya'll..By the
time your back we'll be out of commission w/ Jordans surgery..Good luck and
I'll be thinking of ya'll.

Jenn(Tampa/St.Pete)
=========================================================================
Date:         Sun, 1 Feb 1998 15:11:31 EST
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Janine Krebs <Yonstein@AOL.COM>
Subject:      Re: Billy's Big day
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit

Karen,

Good luck to you and Billy for the surgery on Tuesday.  We'll be thinking
positive thoughts and sending them your way.

I'm sure he'll get through it just fine, and you, too.

Janine (NY)
=========================================================================
Date:         Sun, 1 Feb 1998 15:20:09 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: Billy's Big day
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit

Karen,
I was going to pass something along to you that Marianne told me..You may want
to get some of those T-shirts, for Billy, that button up so you don't have to
pull them over his head. If he's at all like Jordan, it would prove to be a
constant battle. I got mine today at Sears..they were having a sale. Just
something that may prove to be helpful!!

Good Luck
Jenn (Tampa/St. Pete)
=========================================================================
Date:         Sun, 1 Feb 1998 18:35:50 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:         "<George Siebert>" <GSieb91515@AOL.COM>
Subject:      Re: Billy's Big day
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit

Karen,

Best wishes to all of you.   We will be praying for Billy to have a successful
surgery and speedy recovery.

Brenda
Houston
=========================================================================
Date:         Sun, 1 Feb 1998 18:33:57 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:         Lynn Thornquist <Thornq@AOL.COM>
Subject:      Re: Helmets
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit

Robyn,

I'm sorry if you misunderstood me.  Andrew did not wear a helmet with his
frontal advancement, he wore a helmet when the back of his skull was rebuilt.
But Andrew's frontal (and probably only) advancement was done in June, 1997.
He was nine months old and not mobile either.  As I believe I tried to explain
when I first got online, is that the back of Andrew's skull was like a "piece
of swiss cheese".  They took what they could salvage from the back of his
skull and put them strategically in the back (floating technically) and shaved
bone from Andrew's pareital bones and scattered them over the rest of the
empty space.  The bone has not grown together completely yet, but the soft
spots in the back are very small now.  Andrew had to have an eggcrate pillow
for 5 months.

I apologize to everyone out there who might have misunderstood me.

Lynn
=========================================================================
Date:         Sun, 1 Feb 1998 18:44:34 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:         "<George Siebert>" <GSieb91515@AOL.COM>
Subject:      Re: Billy's Big day
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit

Jenn,

Just wanted to wish you luck for Jordan's surgery.  I know how hard the
waiting is but I'm sure everything will be fine.  Just prepare yourself for
the swollen eyes.  I think that shocked me more than anything else even though
everyone warned us.  I know you have a few more days to wait but thought I'd
send this before I'm back to work for the week and don't get another chance to
post.  Jonathan is sitting on my lap and trying very hard to reach the
keyboard so he can wish you all well too!  We will be thinking of you often.
Let us know how things go when you get a chance.

The Sieberts
Brenda, George, Melissa and Jonathan
Houston
=========================================================================
Date:         Sun, 1 Feb 1998 19:16:51 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: Billy's Big day
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit

Karen,

Good luck with Billy's surgery on Tuesday.  I will be thinking of you, Billy
and your family on that day.  Thinking about Billy and his upcoming surgery
brings back memories.  I know exactly what your feeling and everyone else for
that matter.  I will add you to my list of people in my prayers.

Lynn
(Holliston, MA)
=========================================================================
Date:         Sun, 1 Feb 1998 18:35:36 -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:      a note of thanks
MIME-Version: 1.0
Content-Type: multipart/alternative;
              boundary="----=_NextPart_000_002C_01BD2F40.3052FF40"

This is a multi-part message in MIME format.

------=_NextPart_000_002C_01BD2F40.3052FF40
Content-Type: text/plain;
        charset="iso-8859-1"
Content-Transfer-Encoding: quoted-printable

To The Jefferson Family,
     Just a note of thanks for inviting us to your home.  It is really =
nice to know another Apert family is so close.  I hope we can get =
together again soon.  Dinner was great.--  I will keep you updated on =
this next months oncoming events.---Levi was asleep before we got out of =
your driveway!!  All the new stuff to look at must have wore him =
out!-Thank you so much for the pictures of Seth.  ( I'll put pictures in =
the mail of Levi for you tomarrow)  Seth showed us, " There is no limit =
"
Thanks again,  good luck and God bless
Shannon, Lori and Levi
 
 
 
 
 
 
 

 =20

------=_NextPart_000_002C_01BD2F40.3052FF40
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>To The Jefferson Family,</DIV>
<DIV>&nbsp;<FONT color=3D#000000 face=3DKids size=3D2>&nbsp;&nbsp;&nbsp; =
<FONT=20
face=3DArial size=3D3>Just a note of thanks for inviting us to your =
home.&nbsp; It=20
is really nice to know another Apert family is so close.&nbsp; I hope we =
can get=20
together again soon.&nbsp; Dinner was great.--&nbsp; I will keep you =
updated on=20
this next months oncoming events.---Levi was asleep before we got out of =
your=20
driveway!!&nbsp; All the new stuff to look at must have wore him =
out!-Thank you=20
so much for the pictures of Seth.&nbsp; ( I'll put pictures in the mail =
of Levi=20
for you tomarrow)&nbsp; Seth showed us, &quot; There is no limit=20
&quot;</FONT></FONT></DIV>
<DIV>Thanks again,&nbsp; good luck and God bless</DIV>
<DIV>Shannon, Lori and Levi&nbsp;</DIV>
<DIV>&nbsp;</DIV>
<DIV><FONT color=3D#000000 face=3DKids size=3D2><FONT face=3DArial=20
size=3D3></FONT></FONT>&nbsp;</DIV>
<DIV>&nbsp;</DIV>
<DIV>&nbsp;</DIV>
<DIV>&nbsp;</DIV>
<DIV>&nbsp;</DIV>
<DIV>&nbsp;</DIV>
<DIV>&nbsp;</DIV>
<DIV><FONT color=3D#000000 face=3DKids size=3D2><FONT face=3DArial =
size=3D3>&nbsp;=20
</FONT></FONT></DIV></BODY></HTML>

------=_NextPart_000_002C_01BD2F40.3052FF40--
=========================================================================
Date:         Sat, 1 Feb 1997 19:28:55 -0800
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Longshot & Darwin <Longshot.Darwin@MCI2000.COM>
Subject:      Re: New Member
In-Reply-To:  <b6a8333e.34d290e2@aol.com>
MIME-version: 1.0
Content-type: text/plain; X-MAPIextension=.TXT; charset=US-ASCII
Content-transfer-encoding: 7bit

Bob + Beth,

         I just wanted to give you my opinion.  It has been about 5 years
since my last surgrey. At the time it was very hard for me. I had to be
away from home and most of my family. My mom was with me. For my
first plastic surgrey, I had to have my mouth wired shut of 8
weeks, and I was also in the hospital for 3 weeks. That was the
hardest part of my life.  It got hard going back for each surgry. Now
as I look back on it, even though at the time I didn't think all the pain
was worth it, but now I am so glad that I did go through all the
surgries. It has made me feel better about the way I look and it has
given me alot more self-confedence. I am sure your children will feel
the same way as they get older. I hope this helps.

Rachel
=========================================================================
Date:         Mon, 2 Feb 1998 14:43:54 +1300
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:         Howard & Ann <howrdnan@IHUG.CO.NZ>
Subject:      Re: pituitary gland and skin stuff
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"

Kia Ora

Amy's Paediatrician checked her out last week at 90% of national average in both height and weight, and her head measurement was on the median, so certainly no underactive pituitary problem here.  We have calculated she will be 5ft 10ins when fully grown - I'm 5ft7in, Howard is 6ft 2in and her paternal grandmother is 5ft10ins so she will fit into the family photos okay (a shorty beside her 6ft7in uncle though).
 

>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)

No problems with Amy as a baby but she has blackheads on her chin now (nearly 7yrs old) and I am trying Clearasil but it doesn't appear to be making any difference yet.

>a trip to the dermotoligist.
Maybe a visit to the dermatologist will provide information that could help and reassurance and, if nothing else, give you a record for monitoring purposes.

Re skin stuff, her paediatrician thinks that a discolouration on her scalp that has doubled in size in the last six months is a "nevus sebaceous" - yet to be checked out with the local paediatric dermatologist who apparently wrote the section in the book so should know something about it (booked in for March).  Meant to be benign in childhood.  Hah!  You aren't meant to have pimples till your teens either!

>A rather minor issue in the skeme of things at this moment, but I was just
>curious
Jenn, I wouldn't classify "worst case of blackheads" on such a large area of his body as minor, but I can understand that if you compare it to dealing with the ops it does tend to take a back seat doesn't it!
 

>so I don't become overly paronoid...key word is overly..me being paronoid is a given.
Hey Jenn, there's nothing wrong with a little paranoia, it helps keep you sane!
 
 

Janine:
>I was a basket case before her surgery.  Now it kind of seems like a dream to me.
Your are doing well.  To me, more than 6 yrs down the track, the thought of Amy's craniofacial surgery still seems like a nightmare rather than a dream!
 

I sometimes wonder what other parents do with their time when their children don't have these sorts of issues!

Bye for now
Ann
NZ
=========================================================================
Date:         Mon, 2 Feb 1998 14:43:56 +1300
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:         Howard & Ann <howrdnan@IHUG.CO.NZ>
Subject:      Re: socks and shoes
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"

At 06:54 PM 30/01/98 -0800, you wrote:
>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.
>

Ditto here for Amy for shoes and socks, but she was a bit slower and has only recently (nearly) mastered the socks issue - still has trouble with some.  Have just placed on order some self-tying laces which apparently "twang" back around each other when pulled and released.

Ann
NZ
=========================================================================
Date:         Sun, 1 Feb 1998 21:34:45 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:         AOL User <MHTeach102@AOL.COM>
Subject:      A quick Update
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit

just a note to let everyone know how things are going,
 

BJ was admitted to the hospital again on Friday afternoon. The doctors and our
fears were right BJ has spinal meningitis (sp) again. They have started BJ on
even more antibiotics in hope that we can get this under control before it
gets to shunt again. They have him on a complete sterile environment so we
have to gown space suits before we can see him. The doctors moved him to CCU
this morning the doctor nurse ratio is much better 4:1 compared to 1:1 in the
ICU. We are hoping to undergo a shunt operation in the morning if he remains
stable. The good news is that his fever is finally down to normal (they used a
cooler blood transfusion and a massive increase in IV fluids). He is resting
comfortably.  His breathing is slightly labored but much more stable than we
thought it would be.
   I will try to keep everyone up to date with the updates. The doctors are
simply amazed that BJ has not relapsed into a coma and so we are holding onto
that as our good news. Well I need to go shower and get something to eat
before going back. The doctors have asked for someone to be there at all times
so David and I are going to attempt to take shifts. Oh well here goes round 2.

Marjorie

PS. I want to thank those of you that sent BJ Birthday cards. We got them
Thursday and were so pleased. We put them up his wall in his bedroom.
=========================================================================
Date:         Sun, 1 Feb 1998 22:04:36 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:         Beth Tolson <ETolson643@AOL.COM>
Subject:      Re: New Member
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit

Rachel
Thanks for the input!!!  I hope that Tim will share his thoughts as you
have!!!

Beth
=========================================================================
Date:         Sun, 1 Feb 1998 19:54:23 -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:         Robyn Johnston <robyn@ORDATA.COM>
Subject:      Re: A quick Update
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"

Marjorie,

We are sending prayers your way.  Hang in there.  Bj is a tough little guy!
 We are all routing for you.  Take care of yourselves.

Robyn J
=========================================================================
Date:         Sun, 1 Feb 1998 23:02:00 -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:      Re: Billy Big Day
MIME-Version: 1.0
Content-Type: multipart/alternative;
              boundary="----=_NextPart_000_0034_01BD2F65.673A0560"

This is a multi-part message in MIME format.

------=_NextPart_000_0034_01BD2F65.673A0560
Content-Type: text/plain;
        charset="iso-8859-1"
Content-Transfer-Encoding: quoted-printable

Dear Karen,

We will be thinking of you and Billy on his big day.  Good luck with =
everything.

Michele
 

------=_NextPart_000_0034_01BD2F65.673A0560
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>Dear Karen,</FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2></FONT>&nbsp;</DIV>
<DIV><FONT color=3D#000000 size=3D2>We will be thinking of you and Billy =
on his big=20
day.&nbsp; Good luck with everything.</FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2></FONT>&nbsp;</DIV>
<DIV><FONT color=3D#000000 size=3D2>Michele</FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2></FONT>&nbsp;</DIV></BODY></HTML>

------=_NextPart_000_0034_01BD2F65.673A0560--
=========================================================================
Date:         Sun, 1 Feb 1998 20:04:14 -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: Helmets
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"

Lynn, please don't apologize, you mentioned this but, I did not remember
your previous message.  My misunderstanding.  Thanks for clearing me up.
:-) Robyn
=========================================================================
Date:         Sun, 1 Feb 1998 22:29:26 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: Hand Surgery, helmets, wound care
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit

In a message dated 98-01-31 02:18:33 EST, you write:

<< his 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?  >>

It varies. Basically either orthopaedic surgeons otr plastic surgeons can do
subspecialty training (fellowship) in hand surgery. In some centers, the hand
people are plastics, some they are ortho. In the county hospital where I did
my clinical rotations there were both. ER "hand call" rotated between plastics
and ortho just as "face call" rotated between plastics, ENT, or maxillofacial
dentists. In that setting, everyone did a great job. At Stanford, where Evan
will have further hand surgery, one of the pediatric hand surgeons is a
plastic surgeon (I think) an one is an ortho surgeon. The differences seem to
be in the individual skills and experience of the surgeon than the traiing
background.

In reply to whomever it was who asked about walking at 17 months (sorry- I am
trying to go through oodles of e-mail after working 12 hour night shifts last
week) - My eldest daughter (without Aperts) didn't walk until 14 months with
otherwise normal development. Evan (with Aperts) is cruising and pulling up
but not walking "solo" yet at 19 months. He has been slower at all these
milestones, most likely because of the surgeries (8), infections, and
hospitalizations(about 65 cumulative inpatient days). We saw the rehab Dr last
week who was quite pleased with his progress- feels that he is coming along
well and will get there eventually. Ironically, as i understand the sysrtem,
this puts him at a disadvantage for getting early intervention services here
in CA. If he were to be judged to never be able to be smarter than a box of
rocks, he'd get all kinds of services. Go figure!! You'd think having the
potential to become a full-fledged taxpayer would be worth something!! That's
governmental bureaucracy for you!

And on the helmet issue- after Evan's first head surgery at 6 months, they
initially told us he'd need a helmet-then changed their minds as he wasn't
crawling or really mobile enough to do much damage(can't remember whether it
was Plastics or Neurosurg that first suggested it). After his 2nd cranial
surgery at 13 months, they sent him home with a stylish blue neoprene number
(which he hates) and the admonition to only use it whn he was in a position to
be able to really fall and bang his head. Now, 5 months later, I realize that
A) all of a sudden he's moving around more and maybe should wear it, B) he's
not used to it and we'll certainly have a battle on our hands, and C) neither
his new cranio team or his new neurosurgeon have mentioned helmeting him. I
surely would be careful using anything post-op that keeps the incision dark,
moist, warm. Those are the major criteria for bacterial growth. Also, having
worked extensively in wound care I can state with assurance that if you are in
doubt over dried blood vs anything else dark- take a q-tip and peroxide to it.
You won't hurt anything that is viable and dried blood will come off, necrotic
tissue won't. The cleaner the wound, the better it heals.

Marianne
=========================================================================
Date:         Mon, 2 Feb 1998 08:10:56 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: A quick Update
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit

Marjorie,

Sorry to hear of the temporary setback. I don't think anyone needs to convince
you how strong BJ is. We all know hes a fighter and will bounce back, as
before. In the meantime, we will continue to pray for the best for you and the
rest of your family.

The Grahams (Tampa/St. Pete)
=========================================================================
Date:         Mon, 2 Feb 1998 08:40:41 -0600
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         "D. Jefferson" <djeff@MIDWEST.NET>
Subject:      Re: Helmets
MIME-Version: 1.0
Content-Type: text/plain; charset=ISO-8859-1
Content-Transfer-Encoding: 7bit

Seth was fitted for a helmet after his cranial surgery at four months.  He
was not mobile at that time.  I understood that it was for shaping.  His
head has a very nice shape.  I don't know if it was due to the fact we were
diligent about keeping the helmet on or if it was going to look good any
way.  I think that there are some differing opinions out there.

Rachel:  Thanks for your in put about the mid-face.  We will face that a
few years down the road and I am already worried about how Seth will accept
it.

Peace, daj
Dori A. Jefferson
djeff@midwest.net
=========================================================================
Date:         Mon, 2 Feb 1998 09:43:06 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:         Ted Finch & Jeanne McDermott <TFinch10@AOL.COM>
Subject:      Re: Apert & Cataracts
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit

Dear Kathy,
This is about socks. You might try sewing loops for your child to hook his
thumb into. Or try tube socks, slightly oversized. Slipping into a bigger sock
is easier than slipping into a smaller one and with the tube, it doesn't
matter where the heel goes. What becomes important is that your kid feels the
mastery of dressing himself.
Jeanne in Boston, Nate's mom
=========================================================================
Date:         Mon, 2 Feb 1998 09:57:05 -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:      Socks and Shoes
In-Reply-To:  <9ed78e39.34d5db7c@aol.com>
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"

Thanks for all the good advice and ideas!

Kathy
 

At 09:43 AM 2/2/98 EST, you wrote:
>Dear Kathy,
>This is about socks. You might try sewing loops for your child to hook his
>thumb into. Or try tube socks, slightly oversized. Slipping into a bigger
sock
>is easier than slipping into a smaller one and with the tube, it doesn't
>matter where the heel goes. What becomes important is that your kid feels the
>mastery of dressing himself.
>Jeanne in Boston, Nate's mom
>
>
=========================================================================
Date:         Mon, 2 Feb 1998 14:18:38 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: A quick Update
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit

Marjorie:

Sorry to hear about BJ's setback.  We are thinking of you all and hoping and
praying he will improve quickly back in the hospital.

Try to get some rest (I know, easier said than done.)

The Krebs Family
=========================================================================
Date:         Mon, 2 Feb 1998 11:21:20 -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:      walking
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit

Did anyone else out there have kids that walked late (Andrew
> being 17 months)?  Could it be attributed to the Apert feet?

        With all of the families I have had contact with, Apert children
usually walk anywhere up to 2 1/2 years old.  It could be attributed to
all of the surgeries setting back development, to feet, to larger head
size to hold up.  But, as long as the child is still making progress in
the right direction I wouldn't worry too much.  If they are not making
any attempts toward walking I would have an evaluation done.

The majority of support personnel have never seen Apert syndrome so you
may have to take some of their advise with a grain of salt.  Michelle was
pulling herself up on furniture at 15 months of age and the health nurse
that made visits tried to convince me that I needed to get help for her
becasue she wasn't walking yet.  I argued with her about the fact that
many "typical" children don't walk by then either,  Besides, she was
trying in that direction.  She learned to walk a month later, with casts
on both hands!!

Sometimes our children are held under a microscope by professionals and
every little item is questioned.  If the typical children were held up to
this kind a scrutiny there would be a lot more said about them too.  I
think people have to step back a little bit and see the whole picture and
not just the "syndrome".

Hang in there.  I haven't heard of any adults with Apert that don't
walk yet.  You will be running after Andrew in no time, hah!

All my best,

Christine Clark
Apert Support & Information Network
=========================================================================
Date:         Mon, 2 Feb 1998 11:30:30 -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: pituitary gland
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit

> 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)

        I have read many places about the smaller size but with the many
people I have talked to and the individuals I have seen at all of my get
togethers, I wouldn't hold too much stock in this statement.  Even
Michelle is and has always been in the 95th percentile (Mom is 5' 9" and
was in the "tall" spot of most of my elementary school pictures - center,
back row, hah!).  The measurements you give for Jordan are in the 50th
percentile which I would think would be good if he was a small baby.

Hopefully, this is another item off your mind?

Take care.

Christine
=========================================================================
Date:         Mon, 2 Feb 1998 02:17:02 -0500
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Elizabeth de Silva <lizsilva@SRV1.TELCONET.NET>
Subject:      Re: Blake
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit

Sorry for the delay,  I hope everything went well!!!

God bless Blake and family.

Elizabeth
=========================================================================
Date:         Mon, 2 Feb 1998 02:24:54 -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:         Elizabeth de Silva <lizsilva@SRV1.TELCONET.NET>
Subject:      Re: New Member
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit

Welcome to the Thornquist family.  This is a great list where you can
find all the support you need.  I am from Guayaquil, Ecuador.  I have a
three year old daughter that has her fingers fused.  She had one
operation about two years ago, and we are making preparations to go to
PA  for the second surgery.  The doctor that is going to make her
operation told us that he was almost sure that she has Apert.  He told
us that besides tha operation he will guide us on certain examinations
to confirm his diagnosis and begin all the corrections that she will
probably need.

Welcome again and good luck to Andrew.

Elizabeth
=========================================================================
Date:         Mon, 2 Feb 1998 02:27:33 -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:         Elizabeth de Silva <lizsilva@SRV1.TELCONET.NET>
Subject:      Re: An Update on BJ
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit

Marjorie,  keep up.  We are all praying for you and BJ.

Elizabeth
=========================================================================
Date:         Mon, 2 Feb 1998 02:59:31 -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:         Elizabeth de Silva <lizsilva@SRV1.TELCONET.NET>
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit

Dear Joanne,  I understand you perfectly.  As you know I live in a
country that, since I was born, is in economic resetion (hope I spelled
it okay).  My husband spent almost a whole year without a job!! Thanks
God I maintained mine.  But, as I always say, God knows what he does.
He was reserving a very good job for my husband (he is now a Sales
Manager plus well paid), and I am sure He has something very good for
you too.  Keep up with the searching and with your high and positive
spirit.

Elizabeth

J. G. Lindamood wrote:

> 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]
=========================================================================
Date:         Mon, 2 Feb 1998 03:01:38 -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:         Elizabeth de Silva <lizsilva@SRV1.TELCONET.NET>
Subject:      Re: Billy's Big day
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit

Good luck Billy!!!  Karen keep us updated!

Elizabeth

foster wrote:

> Hello to everyone. Well it looks like Billy will be o.k. for surgery.
> I
> guess that means we are ready. He has to be there Tuesday at 6 and
> surgery
> is sheduled 7:15. A.M. So I will let you all know how everything goes.
> Good
> luck to anyone else facing surgery while he is gone.
> Karen
=========================================================================
Date:         Mon, 2 Feb 1998 03:07:06 -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:         Elizabeth de Silva <lizsilva@SRV1.TELCONET.NET>
Subject:      Hello to all and yellow skin
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit

Hello to all.  As you have probably notice I have not able to write
since a long time.  I am making paperwork to go to PA for Alba Victoria
surgery.

I have notice that her skin on her hands and feet is getting kind of
yellow.  The doctors here ask for a bilirubin test.  Does anyone know
something about this?

Elizabeth
=========================================================================
Date:         Mon, 2 Feb 1998 14:48:14 -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:      ApertCrouzon's Chat Tonite! 02/02/98  (fwd)
Comments: To: Crouzon Syndrome Support Group & Other Craniofacial Anomalies
          <crouzon@u.washington.edu>
MIME-Version: 1.0
Content-Type: TEXT/PLAIN; charset=US-ASCII

Tonite is ApertCrouzon Chat Nite!!  So let's get acquainted with each
others.  :-)  Keep in mind that some people will show up alittle later
than the time started.  Please join us!!!   :-)

 Date To Meet On:  Monday, February 2, 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://home.earthlink.net/~hwy2heaven/

mailto:hwy2heaven@earthlink.net
mailto:phalvers@u.washington.edu
=========================================================================
Date:         Mon, 2 Feb 1998 18:33:49 -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>
MIME-Version: 1.0
Content-Type: multipart/alternative;
              boundary="----=_NextPart_000_006D_01BD3009.1ABBDC00"

This is a multi-part message in MIME format.

------=_NextPart_000_006D_01BD3009.1ABBDC00
Content-Type: text/plain;
        charset="iso-8859-1"
Content-Transfer-Encoding: quoted-printable

Kerry,
    I spoke with T. Farmer this morning.  She had just talked to yu.  I =
hope Devin isn't real sick, she said he has a fever.  Let me know.  =
We'll be thinkin'of him. =20

Marjorie,
  Our thoughts and prayers are with B.J.
Hang in there. =20
 
 
 

------=_NextPart_000_006D_01BD3009.1ABBDC00
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>Kerry,</DIV>
<DIV>&nbsp;<FONT color=3D#000000 face=3DKids size=3D2>&nbsp;&nbsp; <FONT =
face=3DArial=20
size=3D3>I spoke with T. Farmer this morning.&nbsp; She had just talked =
to=20
yu.&nbsp; I hope Devin isn't real sick, she said he has a fever.&nbsp; =
Let me=20
know.&nbsp; We'll be thinkin'of him.&nbsp; </FONT></FONT></DIV>
<DIV><FONT color=3D#000000 face=3DKids size=3D2><FONT face=3DArial=20
size=3D3></FONT></FONT>&nbsp;</DIV>
<DIV><FONT color=3D#000000 face=3DKids size=3D2><FONT face=3DArial=20
size=3D3>Marjorie,</FONT></FONT></DIV>
<DIV><FONT color=3D#000000 face=3DKids size=3D2><FONT face=3DArial =
size=3D3>&nbsp; Our=20
thoughts and prayers are with B.J.</FONT></FONT></DIV>
<DIV><FONT color=3D#000000 face=3DKids size=3D2><FONT face=3DArial =
size=3D3>Hang in=20
there.&nbsp; </FONT></FONT></DIV>
<DIV><FONT color=3D#000000 face=3DKids size=3D2><FONT face=3DArial=20
size=3D3></FONT></FONT>&nbsp;</DIV>
<DIV><FONT color=3D#000000 face=3DKids size=3D2><FONT face=3DArial=20
size=3D3></FONT></FONT>&nbsp;</DIV>
<DIV>&nbsp;</DIV></BODY></HTML>

------=_NextPart_000_006D_01BD3009.1ABBDC00--
=========================================================================
Date:         Tue, 3 Feb 1998 21:54:28 +1300
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Howard & Ann <howrdnan@IHUG.CO.NZ>
Subject:      Re: Hand Surgery
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"

Hi Janine

>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?
Amy's Plastic Surgeon operated on her hands, and worked with the Neurosurgeon on her head.  The Orthopaedic Surgeon operated on her feet.  There is a surgeon down south who calls herself a Hand Surgeon, but I don't know whether she is both Plastics and Hands or what - probably depends on their field of interest following training as Plastic Surgeons.

>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?
Amys grafts have been mostly from the groin, with only one patch from one forearm - she has some magnificent scars in her groin but they only show when she wears her high-cut swimsuit, which I only let her wear when she is swimming indoors.  When she is outdoors she wears her high-necked+long-armed+long-legged swimsuit to help protect against sunburn, which is a definite problem down here in NZ.
My understanding of the reason they don't use another person is the high risk of rejection, and then further surgery would have to be undergone to repair the damage done.  Not what we want for our children.

> 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.
You're ahead of me here.  We are just entering that little area.  It seems Amy has been having problems for a while that we just haven't known about and damage has been done.

Good luck
Ann
NZ
=========================================================================
Date:         Tue, 3 Feb 1998 10:59:14 -0400
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Kerri Hedinger <khedinger@NS.GEMLINK.COM>
Subject:      Re: Devin's illness
MIME-Version: 1.0
Content-Type: multipart/alternative;
              boundary="----=_NextPart_000_0086_01BD3092.C445A920"

This is a multi-part message in MIME format.

------=_NextPart_000_0086_01BD3092.C445A920
Content-Type: text/plain;
        charset="iso-8859-1"
Content-Transfer-Encoding: quoted-printable

Judith,

Well, we were very disappointed about this setback.  We had been =
scheduled in Nov. 1997 for this same surgery.  I had kept him well for 3 =
months.  He had a very restless night Sunday.  Monday morning when he =
awoke he started coughing and danged if he wasn't running a fever.  Took =
him to his pediatrician and he has a viral URI.  No antibiotics though.  =
He had alot of congestion in his right lung.  This is very frustrating =
but I know there must be a reason so we will just keep looking forward =
to the next time.  Doris said it would be atleast 1 month before he can =
be rescheduled.  This will prolong his hand surgery again.  I'm trying =
to keep on smiling :~(  Maybe we still will be able to meet you guys one =
day if you decide to stick with Dr. Sargent.  Good luck with your =
evaluation and let me know how things went.  Take care and keep in =
touch!!!!

Kerri
    -----Original Message-----
    From: Judith V. Parks <jvparks@MIDAMER.NET>
    To: APERT@LISTSERV.AOL.COM <APERT@LISTSERV.AOL.COM>
    Date: Monday, February 02, 1998 3:33 PM
   =20
   =20
    Kerry,
        I spoke with T. Farmer this morning.  She had just talked to yu. =
 I hope Devin isn't real sick, she said he has a fever.  Let me know.  =
We'll be thinkin'of him. =20
    =20
    Marjorie,
      Our thoughts and prayers are with B.J.
    Hang in there. =20
    =20
    =20
 

------=_NextPart_000_0086_01BD3092.C445A920
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><!DOCTYPE HTML PUBLIC "-//W3C//DTD W3 =
HTML//EN">
<META content=3D'"MSHTML 4.72.2106.6"' name=3DGENERATOR>
</HEAD>
<BODY bgColor=3D#f0e8d8>
<DIV><FONT color=3D#000000 size=3D2>Judith,</FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2></FONT>&nbsp;</DIV>
<DIV><FONT size=3D2>Well, we were very disappointed about this =
setback.&nbsp; We=20
had been scheduled in Nov. 1997 for this same surgery.&nbsp; I had kept =
him well=20
for 3 months.&nbsp; He had a very restless night Sunday.&nbsp; Monday =
morning=20
when he awoke he started coughing and danged if he wasn't running a =
fever.&nbsp;=20
Took him to his pediatrician and he has a viral URI.&nbsp; No =
antibiotics=20
though.&nbsp; He had alot of congestion in his right lung.&nbsp; This is =
very=20
frustrating but I know there must be a reason so we will just keep =
looking=20
forward to the next time.&nbsp; Doris said it would be atleast 1 month =
before he=20
can be rescheduled.&nbsp; This will prolong his hand surgery =
again.&nbsp; I'm=20
trying to keep on smiling :~(&nbsp; Maybe we still will be able to meet =
you guys=20
one day if you decide to stick with Dr. Sargent.&nbsp; Good luck with =
your=20
evaluation and let me know how things went.&nbsp; Take care and keep in=20
touch!!!!</FONT></DIV>
<DIV><FONT size=3D2></FONT>&nbsp;</DIV>
<DIV><FONT size=3D2>Kerri</FONT></DIV>
<BLOCKQUOTE=20
style=3D"BORDER-LEFT: #000000 solid 2px; MARGIN-LEFT: 5px; PADDING-LEFT: =
5px">
    <DIV><FONT face=3DArial size=3D2><B>-----Original =
Message-----</B><BR><B>From:=20
    </B>Judith V. Parks &lt;<A=20
    =
href=3D"mailto:jvparks@MIDAMER.NET">jvparks@MIDAMER.NET</A>&gt;<BR><B>To:=
=20
    </B><A =
href=3D"mailto:APERT@LISTSERV.AOL.COM">APERT@LISTSERV.AOL.COM</A>=20
    &lt;<A=20
    =
href=3D"mailto:APERT@LISTSERV.AOL.COM">APERT@LISTSERV.AOL.COM</A>&gt;<BR>=
<B>Date:=20
    </B>Monday, February 02, 1998 3:33 PM<BR><BR></DIV></FONT>
    <DIV>Kerry,</DIV>
    <DIV>&nbsp;<FONT color=3D#000000 face=3DKids size=3D2>&nbsp;&nbsp; =
<FONT=20
    face=3DArial size=3D3>I spoke with T. Farmer this morning.&nbsp; She =
had just=20
    talked to yu.&nbsp; I hope Devin isn't real sick, she said he has a=20
    fever.&nbsp; Let me know.&nbsp; We'll be thinkin'of him.&nbsp;=20
    </FONT></FONT></DIV>
    <DIV><FONT color=3D#000000 face=3DKids size=3D2><FONT face=3DArial=20
    size=3D3></FONT></FONT>&nbsp;</DIV>
    <DIV><FONT color=3D#000000 face=3DKids size=3D2><FONT face=3DArial=20
    size=3D3>Marjorie,</FONT></FONT></DIV>
    <DIV><FONT color=3D#000000 face=3DKids size=3D2><FONT face=3DArial =
size=3D3>&nbsp; Our=20
    thoughts and prayers are with B.J.</FONT></FONT></DIV>
    <DIV><FONT color=3D#000000 face=3DKids size=3D2><FONT face=3DArial =
size=3D3>Hang in=20
    there.&nbsp; </FONT></FONT></DIV>
    <DIV><FONT color=3D#000000 face=3DKids size=3D2><FONT face=3DArial=20
    size=3D3></FONT></FONT>&nbsp;</DIV>
    <DIV><FONT color=3D#000000 face=3DKids size=3D2><FONT face=3DArial=20
    size=3D3></FONT></FONT>&nbsp;</DIV>
    <DIV>&nbsp;</DIV></BLOCKQUOTE></BODY></HTML>

------=_NextPart_000_0086_01BD3092.C445A920--
=========================================================================
Date:         Tue, 3 Feb 1998 11:11:30 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: Devin's illness
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit

Kerri,

Sorry to hear Devin is not feeling well.  It must be very frustrating to have
to cancel a surgery that you are all geared up for.  I know when Emily went
for her pre-op checkup I was very nervous it was going to be cancelled.  I
felt like I was as ready as I was going to get.

Hope he is better soon.

Janine
=========================================================================
Date:         Tue, 3 Feb 1998 14:42:13 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: pituitary gland
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit

I have also read about the concern about height in Apert's kids.  Tim is 5'9"
at age 16 and is still growing.  I am only 5'3" and Dad is 5"11".  I think Tim
will certainly fall within an average height range.

Beth
=========================================================================
Date:         Tue, 3 Feb 1998 14:45:05 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:         Beth Tolson <ETolson643@AOL.COM>
Subject:      Re: Devin's illness
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit

How frustrating!!! So many times we had to reschedule.  It's such an emotional
roller coaster.  But...what can you do?  Know how you feel.

Beth
=========================================================================
Date:         Tue, 3 Feb 1998 15:12:51 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: Devin's illness
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit

I can imagine how frustrating this must be for ya'll. I know we are anxious
aboput Jordan being well for his surgery Tuesday. He seems to have a stuffy
nose, actually he ALWAYS has one, but w/ the cold weather (even all the way
down here) and the heat being on..well..stuffiness persists. No fever or lung
involvement!! Keeping our fingers crossed, but if hes not well..what can you
do?? Hope Devin is well soon, and thigs get back on track for ya'll.

Jenn (Tampa/St. Pete)
=========================================================================
Date:         Tue, 3 Feb 1998 16:32:43 +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>
Comments:     Authenticated sender is <jgibson2@POP.erols.com>
From:         Judy Gibson <jgibson2@EROLS.COM>
Subject:      Re: Hello to all and yellow skin
In-Reply-To:  <34D57EAA.6F6F8136@telconet.net>
MIME-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7BIT

> From:          Elizabeth de Silva <lizsilva@SRV1.TELCONET.NET>

> I have notice that her skin on her hands and feet is getting kind of
> yellow.  The doctors here ask for a bilirubin test.  Does anyone know
> something about this?
>

Elizabeth,
    Elevated bilirubin level can be an indication that there is a
problem with the liver.  However, there should be a lot more yellow
than hands and feet.  Generally, the whites of the eyes are the first
place for the yellow to show.  If they're not yellow, does she eat a
lot of carrots or other foods very high in beta carotene?

Judy
=========================================================================
Date:         Tue, 3 Feb 1998 16:29:37 -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:      Toddler Diet
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"

I had to pass this on... Enjoy :-)  Robyn
 

>Announcing the new Toddler Miracle Diet!
 >Flabby Americans arre always on the lookout for an new diet. The trouble
 >with most diets is that you don't get enough to eat (the starvation
 >diet), or you don't get enough variety (the grapefruit diet), or you go
 >broke (the all meat diet). Consequently, most people cheat on their
 >diets, quit after 3 days, or just go right back toi stuffing their faces
 >after it is all over. Is there nothing you can do but give up and tell
 >your friends that you have a gland problem? Or is there a slim hope?
 >Such is the new Toddler Miracle Diet! Over the years you may have
 >noticed that most 2 year olds are trim. It came to me one day over a cup
 >of grapefruit juice and a carrot that perhaps their diet is the reason.
 >After consultation with pediatricians, x-ray technicians and distraught
 >mothers, I was able to formulate this new diet. It is inexpensive and
 >offers great variety and sufficient quantity. ENJOY!!
 >Day 1:
 >Breakfast- One scrambled egg, one piece of toast with grape jelly. Eat 2
 >bites of egg using your fingers, dump the rest on the floor. Take 1 bite
 >of toast, then smear the jelly over your face and clothes.
 >Lunch- Four crayons (any color) a handful of potato chips, and a glass of
 >milk- 3 sips, then spill the rest.
 >Dinner- A dry stick, 2 pennies, 4 sips of flat diet pop.
 >Bedtime snack- Toast piece of bread, butter it and toss it face down on
 >the floor.
 >Day 2:
 >Breakfast- pick up stale toast from the floor and eat it. Drink 1/2
 >bottle of vanila extract or one vial of vegetable dye.
 >Lunch- Half tube of "Pulsating Pink" lipstick and one ice cube, if
 >desired.
 >Afternoon snack- Lick an all day sucker until sticky, take it outside and
 >drop in dirt. Retrieve and continue slurping until clean again, then
 >bring inside and drop on living room carpet.
 >Dinner- A rock or an uncooked bean, which should be thrust up your left
 >nostril. Pour iced tea over mashed potatoes, eat with spoon.
 >Day 3:
 >Breakfast- 2 pancakes with plenty of syrup, eat with fingers, rub fingers
 >in hair to clean. Glass of milk, drink half, stuff excess pancakes in
 >glass. After reakfast, pick up yesterdays sucker from carpet, lick off
 >fuzz until sticky again, then leave on cushion of your best chair.
 >Lunch- Peanut butter and jelly sandwich. Spit several well-chewed bites
 >onto the floor. Pour glass of milk onto table, then slurp up.
 >Dinner- Dish of ice cream, handful of potato chips, 1 sip of cold coffee.
 >Final Day:
 >Breakfast- 1/4 tube of toothpast (any flavor), bit of soap, one olive.
 >Pour glass of milk over bowl of cornflakes, add 1/2 cup of sugar. Wait
 >until cereal is soggy, drink milk and feed cereal to dog with your spoon.
 >Lunch- Eat crumbs off the kitchen floor and dining room carpet. Find
 >that sucker and finish eating it.
 >Dinner- A plate of spaghetti and chocolate milk. Leave meatball on
 >plate. Handfull of cheese snacks, eat 2 and place the rest in bowling
 >ball holes or any other convenient hiding place.

 Sounds like here, I couldn't stop laughing and hoped I didn't laught loud
 enough to wake my 2 year old who just went down for a nap
 but....YOU FORGOT THE EXERCISE PART!

 6:30 a.m run down hall, Jump up and down on bed 6 times and yell "GET UP"
 8:00 run down drive way wearing just a shirt and underware. or go in the
buff.
 8:30 chase cat around the house till she either disapears under a bed or
 someone lets her out.
 8:40 Repeat of 8:00
 9:00 ride trike around the kitchen till sent to room.
 In room jump on bed till you fall off, then pull all toys off shelves and
 empty all drawers.
 Leave room and Climb on chairs, climb on table, pull cats tail.

 Etc. etc. etc.

 take a two hour nap then start over and don't lay down again till 10:00 p.m
 AND remember you can't sit down for more then 5 min. at a time.
=========================================================================
Date:         Tue, 3 Feb 1998 20:23:24 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:         "<George Siebert>" <GSieb91515@AOL.COM>
Subject:      Re: A quick Update
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit

Marjorie,

If ever there was a person who inspired me, it is you.  Your incredible
strength through all of this is truly amazing.  I know your faith must be
extremely strong and I admire you.  We will continue to hold BJ in our prayers
and keep you all close to our heart. With best wishes for some good news.  We
love you BJ---keep fighting big fella!

Brenda
Houston
=========================================================================
Date:         Tue, 3 Feb 1998 19:47:14 -0600
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         "D. Jefferson" <djeff@MIDWEST.NET>
Subject:      Re: Toddler Diet
MIME-Version: 1.0
Content-Type: text/plain; charset=ISO-8859-1
Content-Transfer-Encoding: 7bit

Hey, I'm Seth's big sister.  I teach a pre-school class at a day care and I
have to agree that your toddler diet is pretty true to life.  However, I
was looked at odd when I poured my breakfast all over the floor:)  Thanks
for the laugh, I've printed the diet out to share with the parents and
teachers in our toddler room at work.
Delaney Jefferson
djeff@midwest.net
=========================================================================
Date:         Wed, 4 Feb 1998 17:58:42 +1300
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:         Howard & Ann <howrdnan@IHUG.CO.NZ>
Subject:      Re: Toddler Diet
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"

The only part of this diet I can see a problem is the "Satisfaction" sector.  As adults we won't gain the same satisfaction the toddlers must get by driving their parents up the wall!

Cheers,
Ann
NZ
=========================================================================
Date:         Tue, 3 Feb 1998 21:03:59 -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: Toddler Diet
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"

HA!  Good point Ann!!!  :-)  I swear their must be some alterior motives to
this diet.

Hugs, Robyn

At 05:58 PM 2/4/98 +1300, you wrote:
>The only part of this diet I can see a problem is the "Satisfaction"
sector.  As adults we won't gain the same satisfaction the toddlers must
get by driving their parents up the wall!
>
>Cheers,
>Ann
>NZ
>
=========================================================================
Date:         Wed, 4 Feb 1998 07:03:47 -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:         Bob Horning <Bob.Horning@CORP.HONEYWELL.COM>
Subject:      Re: Yellow skin

I had forgotten about this, but Krista used to get yellowish skin in certain areas (not all over) too.  Most notably in her hands and around her nose.  She was young when that was noticeable.  It doesn't seem to be the case any more (she's 10).

Bob Horning
_______________________________________________________________________________
 

> From:          Elizabeth de Silva <lizsilva@SRV1.TELCONET.NET>

> I have notice that her skin on her hands and feet is getting kind of
> yellow.  The doctors here ask for a bilirubin test.  Does anyone know
> something about this?
>
=========================================================================
Date:         Tue, 3 Feb 1998 20:53:36 -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:         Elizabeth de Silva <lizsilva@SRV1.TELCONET.NET>
Subject:      Re: Hello to all and yellow skin
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit

>   If they're not yellow, does she eat a
> lot of carrots or other foods very high in beta carotene?
>
> Judy

Dear Judy, Albita does not have other yellow parts, but she does eat a
lot of carrots (she loves Bugs Bunny!!).  I will ask the doctor...as
soon as we get the exams reports...if that could be the reason.

Thank you very much for giving me lights on this matter.

Liz.
=========================================================================
Date:         Tue, 3 Feb 1998 20:58:57 -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:         Elizabeth de Silva <lizsilva@SRV1.TELCONET.NET>
Subject:      Re: Yellow skin
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit

Bob Horning wrote:

> I had forgotten about this, but Krista used to get yellowish skin in
> certain areas (not all over) too.  Most notably in her hands and
> around her nose.  She was young when that was noticeable.  It doesn't
> seem to be the case any more (she's 10).
>
> Bob Horning

Bob,  did the doctors mentioned anything about her diet?  I do not want
to be obsesive, but does Krista's yellowish skin was a yellowish turning
to a kind of orange?  Excuse me if I look obsesive, but now that we are
a step to go to PA for her surgery (I do not want to loose this
opportunity) I am worry she might have a liver problem.

Warm regards,

Liz.
=========================================================================
Date:         Wed, 4 Feb 1998 08:05:50 -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:         Bob Horning <Bob.Horning@CORP.HONEYWELL.COM>
Subject:      Re: Yellow skin

Liz

Yes, it was yellow turning to orange.  And it did seem to correspond to eating yellow vegetables to some degree.  You could actually wash it off a partially.  Try wiping her face with a white rag and see if the colors gets on the rag.  I just talked to my wife and she said she remembers that with our other kids too.  So it isn't necessarily Aperts related.  Perhaps it is more pronounced with Aperts because of the added sweating, etc.

It's probably worth getting the bilirubin test to make sure there are no serious problems, but it sure sounds like the carrots.

I hope everything works out.

Bob Horning

_______________________________________________________________________________
From: Elizabeth de Silva on Wed, Feb 4, 1998 8:52 AM
Subject: Re: Yellow skin
To: Information exchange and Internet safe haven for Apert Syndrome

Bob Horning wrote:

> I had forgotten about this, but Krista used to get yellowish skin in
> certain areas (not all over) too.  Most notably in her hands and
> around her nose.  She was young when that was noticeable.  It doesn't
> seem to be the case any more (she's 10).
>
> Bob Horning

Bob,  did the doctors mentioned anything about her diet?  I do not want
to be obsesive, but does Krista's yellowish skin was a yellowish turning
to a kind of orange?  Excuse me if I look obsesive, but now that we are
a step to go to PA for her surgery (I do not want to loose this
opportunity) I am worry she might have a liver problem.

Warm regards,

Liz.
=========================================================================
Date:         Wed, 4 Feb 1998 09:05:37 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: Yellow skin
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit

 I know I had a friend who was obsessed with her weight. I mean aren't we all,
but she took it to the extreme..and all she would eat were carrots..those
convieniant ones peeled and cut up for you. well, sure enough she started
looking like she had a nice tan..then she looked like she bought a bad self-
tanner b/c she kept getting more and more orange. Finally she switched to
broccoli and her "tan" went awy..and she never did turn green!!  Also, I was
feeding JOrdan "yellow veggies" for a while and his pediatrician told me to
mix it w/ fruits and green veggies or he may turn slightly orange also.
Hopefully, this is all it will turn out to be!

Jenn(Tampa/St. Pete)
=========================================================================
Date:         Tue, 3 Feb 1998 21:23:43 -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:         Elizabeth de Silva <lizsilva@SRV1.TELCONET.NET>
Subject:      Re: Yellow skin
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit

Thank you.  I will not wait until the exams reports,  I will begin to
change her diet since today.  It is amazing how children begin to show
things just when they get close to a surgery!!

Thank you again,

Liz

Jennifer Graham wrote:

>  I know I had a friend who was obsessed with her weight. I mean aren't
> we all,
> but she took it to the extreme..and all she would eat were
> carrots..those
> convieniant ones peeled and cut up for you. well, sure enough she
> started
> looking like she had a nice tan..then she looked like she bought a bad
> self-
> tanner b/c she kept getting more and more orange. Finally she switched
> to
> broccoli and her "tan" went awy..and she never did turn green!!  Also,
> I was
> feeding JOrdan "yellow veggies" for a while and his pediatrician told
> me to
> mix it w/ fruits and green veggies or he may turn slightly orange
> also.
> Hopefully, this is all it will turn out to be!
>
> Jenn(Tampa/St. Pete)
=========================================================================
Date:         Tue, 3 Feb 1998 21:26:05 -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:         Elizabeth de Silva <lizsilva@SRV1.TELCONET.NET>
Subject:      Re: Yellow skin
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit

Thank you Bob... and now that you mention it... yes! she sweats a lot,
even with the air conditioning on!!!

Liz.

Bob Horning wrote:

> Liz
>
> Yes, it was yellow turning to orange.  And it did seem to correspond
> to eating yellow vegetables to some degree.  You could actually wash
> it off a partially.  Try wiping her face with a white rag and see if
> the colors gets on the rag.  I just talked to my wife and she said she
> remembers that with our other kids too.  So it isn't necessarily
> Aperts related.  Perhaps it is more pronounced with Aperts because of
> the added sweating, etc.
>
> It's probably worth getting the bilirubin test to make sure there are
> no serious problems, but it sure sounds like the carrots.
>
> I hope everything works out.
>
> Bob Horning
>
=========================================================================
Date:         Wed, 4 Feb 1998 08:15:51 -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:         "Pulido, Laura" <PulidoL@OR.CSMC.EDU>
Subject:      Yellow skin
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
Content-Transfer-Encoding: 8bit

Martha used to get yellowish skin as well (especially around her nose).
Her pediatrician said that most likely she was eating something with a
lot of carrots in it.  Sure enough, when I got home I picked up one of
her Gerber Baby Food jars and the main ingredient is carrots.

Martha turned 2 on January 12.  My mother made tamales, cake and a
piñata.  Martha didn't like the idea of all the kids wacking the piñata,
I imagine she thought it was one of her presents and they were breaking
it.

Please visit Martha's Page on Teeter's Page!  Thanks!
=========================================================================
Date:         Wed, 4 Feb 1998 19:24:32 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: Yellow skin
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit

when katey Grace was around 8 mons. we noticed her hands, feet and nose were a
little on the orange  side. her pediatrician said it was too much carrots and
other yellow veggies of which sweet potatoes was her favorite.  She is now  2
1/2 and there is no sign of the discoloration.

Granny Sherri - Clermont, FL (25 mi. W of  Orlando)
=========================================================================
Date:         Wed, 4 Feb 1998 19:28:47 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: sweating
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit

this is all so new to us in Florida.  I haven't heard anything about Aperts
being related to sweating.  Any info in this area would be appreciated

Granny Sherri - Clermont Florida
=========================================================================
Date:         Wed, 4 Feb 1998 18:54:23 -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_006A_01BD319E.4F071560"

This is a multi-part message in MIME format.

------=_NextPart_000_006A_01BD319E.4F071560
Content-Type: text/plain;
        charset="iso-8859-1"
Content-Transfer-Encoding: quoted-printable

Kerry,

Just wanted to remind you everything happens for a reason.  Shannon (my =
husband) and I joke---Before Levi was born, he was sittin' up there =
talkin' to the BIG GUY and justa' thumbin though the mom and dad =
catalog.  Out of all the moms and dads in the whole catalog.....he chose =
us!  He new he would have a loving supportive family and a mommy and =
daddy who would love him very much.
The big guy knew we could handle the load(he wont give yu a load yu =
can't handle)---For some unknown reason it isn't the right time for =
Devins' sugery.  Hey, when I'm upset when Levi has setbacks--remind me =
of my own advice.  I don't know what you're feelin' as of yet.(..Those =
days are comin' soon enough) but when I do know what you're feelin', =
I'll be awful glad I can get on here and jabber. =20
I'll be thinkin' of ya'll--I'll let yu know bout' our trip.
Lori
=20

------=_NextPart_000_006A_01BD319E.4F071560
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>Kerry,</DIV>
<DIV>&nbsp;</DIV>
<DIV>Just wanted to remind you everything happens for a reason.&nbsp; =
Shannon=20
(my husband) and I joke---Before Levi was born, he was sittin' up there =
talkin'=20
to the BIG GUY and justa' thumbin though the mom and dad catalog.&nbsp; =
Out of=20
all the moms and dads in the whole catalog.....he chose us!&nbsp; He new =
he=20
would have a loving supportive family and a mommy and daddy who would =
love him=20
very much.</DIV>
<DIV>The big guy knew we could handle the load(he wont give yu a load yu =
can't=20
handle)---For some unknown reason it isn't the right time for Devins'=20
sugery.&nbsp; Hey, when I'm upset when Levi has setbacks--remind me of =
my own=20
advice.&nbsp; I don't know what you're feelin' as of yet.(..Those days =
are=20
comin' soon enough) but when I do know what you're feelin', I'll be =
awful glad I=20
can get on here and jabber.&nbsp;&nbsp;</DIV>
<DIV>I'll be thinkin' of ya'll--I'll let yu know bout' our trip.</DIV>
<DIV>Lori</DIV>
<DIV>&nbsp;</DIV></BODY></HTML>

------=_NextPart_000_006A_01BD319E.4F071560--
=========================================================================
Date:         Wed, 4 Feb 1998 20:38:05 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:         Lynn Thornquist <Thornq@AOL.COM>
Subject:      Re: sweating
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit

Andrew, now 17 months old used to sweat alot when he was newborn.  I would say
that it probably subsided when he was about 6 months old.  I have been told
that it is very common in Apert.

Lynn Thornquist
(Holliston, MA)
=========================================================================
Date:         Wed, 4 Feb 1998 20:45:00 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:         Lynn Thornquist <Thornq@AOL.COM>
Subject:      Dr. Upton's Book
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit

For anyone out there who would like a copy of Dr. Upton's book, I found out
how.  It is called Clinics of Plastic Surgery.  For those people who live near
Boston, MA he said you can find it at the Harvard Coop right across the street
from Children's Hospital.  I will be calling his secretary tomorrow, Thursday
2/5, to get the actual volume number.  So I will let everyone know a little
more tomorrow.

I know there were only a couple of people out there who wanted the book, so
for those of you who want it and do not live in Massachusetts, please e-mail
me back and I will get you a copy of the book and then mail it to your home.
Unless anyone has a better way of getting the book to people outside of Mass.

Lynn Thornquist
=========================================================================
Date:         Wed, 4 Feb 1998 21:15:03 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: sweating
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit

Tim (16 yrs.) always sweat a great deal.  When he was a baby I would drape
myself with a towel before feeding him because he sweat so much.  He always
needed two baths a day because of the sweating.  He still sweats a lot, but I
don't think it's as much as when he was little.  We keep on top of the hygiene
and he does pretty well with this.

Beth
=========================================================================
Date:         Wed, 4 Feb 1998 21:16:30 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:         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

Lynn
Thanks so much for the info !!!!!! I will get into the Harvard Coop to get a
copy.  My husband's birthday is Monday and that is all he really wants.

Beth
=========================================================================
Date:         Wed, 4 Feb 1998 18:41:01 -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:         Richard Tait <rjrtait@MARS.ARK.COM>
Subject:      general thanks
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"

Just wanted to let everyone know that I really appreciate being part of this
whole thing after one day on the list.  I've enjoyed reading everything that
everyone has written, and can feel the support that we all need.  I don't
have many people who understand what we are going through, and am far away
from anyone who has aperts in their family.  It's comforting to be a part of
those that have the same problems eg. cancelled surgeries due to illness of
child.
Am looking forward to joining in on some of the conversations!
rene
=========================================================================
Date:         Wed, 4 Feb 1998 21:04:26 -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:      DR. UPTON'S BOOK
MIME-version: 1.0
Content-type: text/plain; charset="us-ascii"

LYNN,

        I would love to have a copy of this book.  Is it a hard back copy
or are you talking about zeroxing the book?  I have a zerox copy, but it is
not as good as the real thing.  I would be happy to send you money for the
cost of sending it!!  Thanks!
 

                                                Denise Graham
=========================================================================
Date:         Wed, 4 Feb 1998 23:42:01 -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: Dr. Upton's Book
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit

Lynn,
I am also interested in a copy of the book.
Please let me know how much it will cost.

Rose
La Mirada, CA
=========================================================================
Date:         Thu, 5 Feb 1998 07:09:12 -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:      More Than Half of Plastic Surgeons Surveyed Report Insurance
              Coverage Denial for Patients with Childhood Deformities,
              Disfigurement and Congenital Defects (fwd)
Comments: To: Crouzon Syndrome Support Group & Other Craniofacial Anomalies
          <crouzon@u.washington.edu>, Cleft-Talk <cleft-talk@pa.mother.com>,
          Cranio-Serv <cranio-serve@pa.mother.com>
MIME-Version: 1.0
Content-Type: MULTIPART/MIXED; BOUNDARY="0-212795870-886691352=:4513"

  This message is in MIME format.  The first part should be readable text,
  while the remaining parts are likely unreadable without MIME-aware tools.
  Send mail to mime@docserver.cac.washington.edu for more info.

--0-212795870-886691352=:4513
Content-Type: TEXT/PLAIN; CHARSET=us-ascii
Content-ID: <Pine.ULT.3.95.980205070819.4513D@bank1.u.washington.edu>

http://www.plasticsurgery.org/mediactr/insur.htm

>                  [Plastic Surgery Information Service]
>                             [Media Center]
>
>  More Than Half of Plastic Surgeons Surveyed Report Insurance Coverage
>    Denial for Patients with Childhood Deformities, Disfigurement and
>                           Congenital Defects
>
>                                 Contact:Media Relations Manager
>                                         847/228-9900 ext.349
>                                         Email: ner@plasticsurgery.org
>
> Arlington Heights, Ill. (December 1997) -- John Grisham's The
> Rainmaker is a story about an insurance company that routinely denies
> coverage for medically necessary procedures. Unfortunately, this
> scenario doesn't just occur in books and movies. In a recent survey
> conducted by the American Society of Plastic and Reconstructive
> Surgeons (ASPRS), more than half of plastic surgeons polled reported
> insurance denial or trouble obtaining coverage of procedures for
> deformities, disfigurements and congenital defects in children.
>
> "I struggle personally every day with denial for reimbursement for
> these deformities, and while the results of the poll are alarming,
> they are not surprising," says Dennis Lynch, MD, president of ASPRS.
>
> "Insurance coverage denial for pediatric plastic surgery procedures is
> a symptom of the broader issues plaguing the state of medical care in
> this country today," says Dr. Lynch. "From decreased hospital stays to
> an increased number of insurance denials for procedures traditionally
> covered, insurance companies rather than medical professionals are
> determining the quality of patient care."
>
> "Who should be determining what is 'medically necessary,' -- insurance
> companies or physicians?" adds Dr. Lynch.
>
> ASPRS is dedicated to alerting the public to this issue and educating
> insurance companies about what constitutes reconstructive versus
> cosmetic surgery. In addition, ASPRS will work with other patient and
> physician organizations to pass legislation to ensure coverage for
> childhood deformities, disfigurements and congenital defects.
>
> The American Medical Association showed its support of ASPRS'
> endeavors by passing a resolution today on this issue. When the AMA
> passes a resolution, it officially goes on record in support of an
> issue, in this case insurance coverage for procedures associated with
> childhood deformities, disfigurements, and congenital defects.
>
> ASPRS found the most often denied childhood deformities,
> disfigurements and congenital defects procedures are associated with:
> 1) nose reshaping for congenital nasal deformities related to cleft
> lip and craniofacial deformity; 2) repair of abnormally small outer
> ear (microtia); 3) cleft lip repair.
>
> Kenneth Salyer, MD, of Dallas, a specialist in pediatric plastic
> surgery, has witnessed many times the additional anguish caused to
> families by denied insurance coverage. "It is an outrage that families
> must also have to worry about obtaining insurance coverage for
> medically necessary procedures during this already stressful time in
> their lives. Battling with insurance companies for coverage only adds
> to the tragedy of their situation."
>
> Most often cited reasons given by insurance companies for denial are:
> the procedure is not medically necessary; is cosmetic in nature; or is
> not needed for functional purposes.
>
> The American Medical Association defines cosmetic and reconstructive
> surgery as follows, and encourages third-party payers to use these
> definitions in determining eligible services for coverage under the
> plans they offer or administer:
>
>    * Cosmetic surgery is performed to reshape normal structures ofthe
>      body in order to improve the patient's appearance and self-
>      esteem.
>
>    * Reconstructive surgery is performed on abnormal structures of the
>      body, caused by congenital defects, developmental abnormalities,
>      trauma, infection, tumors or disease. It is generally performed
>      to improve function, but may also be done to approximate a normal
>      appearance.
>
> "ASPRS is committed to this issue and views it as one of its main
> initiatives for 1998, and beyond as necessary," says Dr. Lynch. "We
> want to ensure that parents can focus on caring for their child, not
> hassling with insurance companies for coverage they rightfully
> deserve."
>
> The American Society of Plastic and Reconstructive Surgeons represents
> 97 percent of all physicians certified by the American Board of
> Plastic Surgery (ABPS). By choosing an ASPRS member plastic surgeon
> who i.s certified by ABPS, patients are ensured that the physician has
> graduated from an accredited medical school and completed at least
> five years of additional residency, usually three years in general
> surgery and two years of plastic surgery. To be certified by ABPS, a
> physician must also practice plastic surgery for two years and pass
> comprehensive written and oral examinations. Consumers may call the
> Plastic Surgery Information Service at 1-800-635-0635 or access the
> ASPRS web site at www.plasticsurgery.org for informational brochures
> and names of qualified plastic surgeons in their areas.
>
>

--0-212795870-886691352=:4513--
=========================================================================
Date:         Thu, 5 Feb 1998 07:09:56 -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:      Children with Deformities and other Craniofacial and Congenital
              Anamolies - Lack of Insurance Coverage (fwd)
Comments: To: Crouzon Syndrome Support Group & Other Craniofacial Anomalies
          <crouzon@u.washington.edu>, Cranio-Serv <cranio-serve@pa.mother.com>,
          Cleft-Talk <cleft-talk@pa.mother.com>
MIME-Version: 1.0
Content-Type: MULTIPART/MIXED; BOUNDARY="0-214775596-886691396=:4513"

  This message is in MIME format.  The first part should be readable text,
  while the remaining parts are likely unreadable without MIME-aware tools.
  Send mail to mime@docserver.cac.washington.edu for more info.

--0-214775596-886691396=:4513
Content-Type: TEXT/PLAIN; CHARSET=us-ascii
Content-ID: <Pine.ULT.3.95.980205070918.4513H@bank1.u.washington.edu>

http://www.plasticsurgery.org/advocacy/cranio.htm

>                  [Plastic Surgery Information Service]
>                           [Patient Advocacy]
>
> October 22, 1997
>
> The Honorable Alexis M. Herman
> The Honorable Donna E. Shalala, PhD
> Co-Chairs
> President's Advisory Commission on Consumer Protection
>      and Quality in the Health Care Industry
> Hubert H. Humphrey Building
> 200 Independence Avenue, SW
> Room 118F
> Washington, DC 20201
>
> Dear Secretary Herman and Secretary Shalala:
>
> On behalf of the American Society of Plastic and Reconstructive
> Surgeons (ASPRS), I would like to commend your commission's efforts to
> bolster protections for patients enrolled in health plans.
>
> ASPRS represents 97% of the nearly 5,000 board certified plastic
> surgeons in the United States. Plastic surgeons provide highly skilled
> surgical services which improve both the functional capacity and
> quality of life of our patients. These services include the treatment
> of congenital deformities, burn injuries, traumatic injuries, and
> cancer.
>
> To assist the commission with its mission, we write to point out a
> disturbing trend observed by members of the medical community
> recently, which is beginning to be documented in media reports. An
> increasing number of children face a growing problem of managed care
> and insurance companies denying insurance coverage for facial
> deformities and disfigurement, as well as other congenital defects.
> Several organizations are exploring forming a coalition to facilitate
> insurance coverage for children with deformities. The attached LA
> Times article addresses this latest attempt to cut costs by denying
> necessary care.
>
> Children who do not have their facial anomalies repaired face
> long-term physical and psychological injuries. Surgeons are able to
> perform the necessary surgeries, but some insurance companies claim
> that these services are "cosmetic" in nature, especially subsequent
> stage surgeries. Like other forms of reconstruction, surgery to repair
> facial deformities is reconstructive and not cosmetic because it is
> performed on abnormal structures to restore them to a more normal
> state. The function of the face is to appear normal. Insurers should
> not be allowed to discriminate against children born with deformities.
>
> ASPRS stands ready to assist the commission investigate and address
> this problem. Please call Government Relations Manager Adrian
> Hochstadt at 847/228-3344, or our Washington Representative Jon Kent
> at 202/223-6222, if you or the commission staff wish to discuss this
> issue with us.
>
> Thank you for your consideration.
>
> Sincerely,
>
> Dennis J. Lynch, MD
> ASPRS President

--0-214775596-886691396=:4513--
=========================================================================
Date:         Thu, 5 Feb 1998 10:56:08 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:         Robin Moreno <TheMorenos@AOL.COM>
Subject:      Re: Toddler Diet
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit

that is too cute and too true!!!!
=========================================================================
Date:         Thu, 5 Feb 1998 10:33:49 -0700
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         baconsmith <bluenose@TELUSPLANET.NET>
Subject:      Re: Dr. Upton's Book
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"

Hi Lynn. Thanks for this information.  I would love a copy of the book and
will send you a cheque for US$ pronto.  Please let me know how much and I
will also include somje extra for shipping costs.

I am the vice rpesident of the Alberta Cleft palate/Craniofacial Foundation
and I think this book would be a valuable resource for our families here.

Thank you very much for your help.  Just send me your snail mail address via
private and I'll get some money off to you right away.

Pat Bacon
Calgary, Alberta, Canada
email to: bluenose@telusplanet.net
IM: onlypeach
=========================================================================
Date:         Thu, 5 Feb 1998 13:34:32 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:      The Book!!!
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit

Just to let everyone know, I am going to take a few days and compile a list
and get all the pertinent information and then send out individual e-mails to
everyone who wants THE BOOK!!!! When I give the cost, I will include shipping
charges as well.

IT IS THE ACTUAL BOOK, NOT A COPY!!!!!!!!

Beth,

Dr. Upton said that he was not sure what volume, I will let you know.

Camous,

Send me your e-mail address so I may put it on my list.

I'm glad I can help everyone out.  I guess I will be getting to know the men
at the post office very well.  Talk to everyone real soon.

Lynn
=========================================================================
Date:         Thu, 5 Feb 1998 10:48:16 -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:      Dr. Will Be Interview By News-Reporter
Comments: To: Crouzon Syndrome Support Group & Other Craniofacial Anomalies
          <crouzon@u.washington.edu>, Cleft-Talk <cleft-talk@pa.mother.com>,
          Cranio-Serv <cranio-serve@pa.mother.com>
MIME-Version: 1.0
Content-Type: TEXT/PLAIN; charset=US-ASCII

Hi everyone!

A Short Segment on Insurances Denial of Coverage for the
Reconstructive Surgeries on the News:

I just found out that my craniofacial surgeon, Dr. Gruss will
be interviewed by a KOMO News 4 reporter, Kathi Goertzen about
the insurance companies deny coverage for the reconstructive
surgery and also the differences between the reconstructive
and cosmetic procedures.  This was done at Children's Hospital
but also reported that it's NOT just only affected the parents
with children but also adult patients as well too.  The segment
will be shown tomorrow on Friday, Feb 6th at the 5pm news.

Hugs,  Penny

http://home.earthlink.net/~hwy2heaven/

mailto:hwy2heaven@earthlink.net
mailto:phalvers@u.washington.edu
=========================================================================
Date:         Thu, 5 Feb 1998 17:50:56 -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:         Leanne Maclean <lmaclean@NETCOM.CA>
Subject:      Dr. Uptons book
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii

Dear Lynn,

I'd also like to know all the pertinent information about Dr. Upton's
book.  Please put me on your e mail list.  Looking forward to hearing
more about the cost and the postage to Alberta, Canada!  Thanks.

Leanne Maclean
lmaclean@netcom.ca
=========================================================================
Date:         Thu, 5 Feb 1998 17:24:56 -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:      CHECKING ON DEVIN
MIME-version: 1.0
Content-type: text/plain; charset="us-ascii"

        KERRI,
        I was just wanting to check on you and Devin.  I am sure today has
been very hard on you.  When will Devin be rescheduled?  I hope he is
feeling better.  If you need to talk just call me collect!!  I am thinking
of you and keeping you guys in our prayers!

BJ and family, you are in our prayers, too!!!!!!!!

                                God Bless,
                                Denise Graham
=========================================================================
Date:         Fri, 6 Feb 1998 10:39:33 +1100
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Carol Hamzsak <carolh@HOTKEY.NET.AU>
Subject:      Re Toddler Diet
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit

Excellent!! had a really great laugh.  Bur how true may be I should try
it rather that Weight Watches

Great Stuff
Thanks
=========================================================================
Date:         Fri, 6 Feb 1998 10:35:15 +1100
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Carol Hamzsak <carolh@HOTKEY.NET.AU>
Subject:      Sleep Study
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit

Hello

Well I have just returned from Ashleigh's Sleep Study and it was
terribe.  She got ver stressed with them putting all the wires to her
head and body and then when she finally got so stressed and broke into a
horrific sweat and cried so much she finally went to sleep then they
kept on waking her to attach more things to her and straps around
her!!!!  Oh boy I feel like Im gonna drop my husband is in bed catching
up on some sleep and I will catch up later.  I understand that they have
to do these things to get the correct readings but the child needs to
sleep as well and Ashleigh wakes at the slightest of movement or noise
and then its almost impossible to get her back to sleep.

Well its going to be a couple of weeks before we get the results and
what I would like to know is if anyone has had a sleep study before and
what the results were from this and any treatments that they may have
had.  Ashleigh had this because she may have to have tonsils and
adenoids taken out and polyps removed from in her nostril and see if she
may have sleep apnea OH BOY!!!!!

Sorry about the winge but they really upset me last night and I hate to
see her so stressed over something that should have been what I thought
easy specially the fact that it wasn't surgery.

Thanks for Listening
Take Care
Carol
=========================================================================
Date:         Fri, 6 Feb 1998 10:44:28 +1100
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Carol Hamzsak <carolh@HOTKEY.NET.AU>
Subject:      The Book
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit

Lynn

We have been trying to get photocopies of sections of this book for the
specialists that we see.  I was tolk I could only get this book in
Canada.  I would like to know what it would cost and also how much to
sent to Australia.

Thanks Carol
=========================================================================
Date:         Thu, 5 Feb 1998 19:38:58 -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:         ize <ize@TACOMA.CEATLABS.OKSTATE.EDU>
Subject:      Dr Upton's book
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit

Dear Lynn,

        We want to thank you for the information and would like to be included
on your list. Looking forward to hear about the cost and postage.
 
 

        Thank you,
        The Ize Family.
=========================================================================
Date:         Thu, 5 Feb 1998 19:38:53 -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:         ize <ize@TACOMA.CEATLABS.OKSTATE.EDU>
Subject:      Sleep Study
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit

Dear Carol,
 

        Felipe had the sleep study done about two month ago and the results
came after ten days. Felipe had obstructed apnea. He had to have his
tonsils and adenoids removed. The surgery was simple and it took just 15
minutes. Before the surgery, he used to snore a lot. Now he got better.
The doctor also told that Felipe would continius to snore for at list
two month after the surgery. We thank God that Felipe improved so much
in less than a month after the surgery.
         I hope this information helps. Feel free to ask more questions if you
want.
 

        The Ize Family from Oklahoma.
=========================================================================
Date:         Thu, 5 Feb 1998 21:45:27 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:         AOL User <MHTeach102@AOL.COM>
Subject:      An Update
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit

Sorry for the delay but things have been hectic to say the least. BJ had a
shunt revision operation done on Tuesday around 2 am. His inner cranial
pressure started to sky rocket so we had no choice. They have decided to leave
this shunt external until they can decide how serious the infection is. They
have about maxed out the antibiotics and he is quickly growing resistent to
them. He is resting comfortably and appears to be out of serious danger, but
he is still touch and go. We were hoping they would move him back to ICU but
have decided to leave him in the Critical Care Unit. The doctors plan on
taking him back to the OR tommorow to replace his ear tubes and to remove scar
tissue from his trache and lungs. The surgery is only scheduled to last 2
hours so that is good. They are hoping that by changing the ear tubes they can
examine his ears for hidden infection pockets. It is a long shot but maybe
that is his recent fever infection problem and not the shunt.

His Inner Cranial Pressure (ICP) has begun decreasing since the shunt
operation, and hopefully sometime next week they can put the shunt back
internally. David and I both gave blood today, we are trying to help replace
all that they have used on BJ. Well I will run I am starting to ramble on
again.

Marjorie & David Harmon
=========================================================================
Date:         Thu, 5 Feb 1998 22:12:19 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:      Re: An Update
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit

Not a day goes by when I don't think about how BJ he's doing.  He is the
strongest guy I've ever known.  I really hope they find a cause for the fever
infection.  As always, I pray for BJ and you.

-Andrea
=========================================================================
Date:         Thu, 5 Feb 1998 22:25:26 -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:      Up Date
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"

Hello friends,

        We just wanted to let you all know how our Billy is doing. It has
been a interesting and stessful three day ,but we are happy to say that
things are going very well so far for Wonka(Billy). His surgery was set for
7:15 a.m. and he went back right on the nose.After two hours we found out
that they had'nt started yet. The cound'nt find any viens to use and finally
had had one of the surgons place two lines in surgically. So started at
10a.m. and they were done at 4:30. They felt everything went pretty well.
There was two little slits in the brain where the bone had started cut in
but they were small and easy to fix. The doctors said they had not done any
real damage but they were happy that we did'nt wait to much longer to do the
surgery. Billy was able to come off the ventalator right after he was taken
into recovery and was awake. He was on morphine and was in the picu unit
until last night and then he was taken to th intermidiate unit. He was and
is still very swollen but was able to open he eyes half way.He did'nt want
to be held so we let him just chill and held his hands.Today they stoppedthe
morphine and are just giving him tylenal. He is swollen all over today but
was able to be held and was able to start some feeding by his Micky button.
We were very happy to see after his operation there was no bib bandages and
still still had most of his hair. We are very pleased so far and his doctors
have been wonderful to him and us . He is a brave and strong little boy and
we are blessed that god let us have this wonderful little guy. Well thats
all for now. Hope all is well for everyone. One more thing Wonka said ma ma
for the first time the day before the surgery. What a rush that was.

Bye for now and we'll let you know how things are going in a few day's
The Fosters
=========================================================================
Date:         Thu, 5 Feb 1998 22:27:40 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: Up Date
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit

So glad to hear the surgery went well and Billy is recovering nicely.  I got a
chill when I read your report of the first "ma ma".  I have been waiting
patiently.  Jonathan is 14 months old tomorrow and still hasn't muttered the
"M" sound.  He calls me nana.

Hope you get to go home soon.

Brenda
Houston
=========================================================================
Date:         Thu, 5 Feb 1998 22:31:01 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

Lynn,

I would greatly appreciate Dr. Upton's book.  Please email me at
GSieb91515@aol.com with the specific costs (including your time), etc.
Thanks so much for making this a possibility.

Brenda Siebert
Houston
=========================================================================
Date:         Thu, 5 Feb 1998 19:53:25 -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: Sleep Study
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"

Carol,
Sounds familiar.  By the way, how old is Ashleigh?  Brenna - 20 months old,
had a sleep study done around 10 months of age and came back positive for
obstructive sleep apnea.  She has had 3 surgeries so far to try and correct
her  breathing.  The last one was successful for a while (6 months) but she
is now getting bad again.  We are going to see the ENT again next week.
Probably another sleep study to verify. :-(  Our last visit the ENT warned
us that this might happen.  I just didn't think so soon.  We will probably
have to remove her tonsils/adenoids too.  I was really hoping the last
results would last a little longer.  She has had stents twice and all of
the excess tissue removed from the inside of her nasal passages.  I have
heard from many that the T&A removal does wonders, even though it can be a
rough recovery.  Please keep us updated on your study results.  Sending
good thoughts your way!

Robyn Johnston
Eugene, OR

At 10:35 AM 2/6/98 +1100, you wrote:
>Hello
>
>Well I have just returned from Ashleigh's Sleep Study and it was
>terribe.  She got ver stressed with them putting all the wires to her
>head and body and then when she finally got so stressed and broke into a
>horrific sweat and cried so much she finally went to sleep then they
>kept on waking her to attach more things to her and straps around
>her!!!!  Oh boy I feel like Im gonna drop my husband is in bed catching
>up on some sleep and I will catch up later.  I understand that they have
>to do these things to get the correct readings but the child needs to
>sleep as well and Ashleigh wakes at the slightest of movement or noise
>and then its almost impossible to get her back to sleep.
>
>Well its going to be a couple of weeks before we get the results and
>what I would like to know is if anyone has had a sleep study before and
>what the results were from this and any treatments that they may have
>had.  Ashleigh had this because she may have to have tonsils and
>adenoids taken out and polyps removed from in her nostril and see if she
>may have sleep apnea OH BOY!!!!!
>
>Sorry about the winge but they really upset me last night and I hate to
>see her so stressed over something that should have been what I thought
>easy specially the fact that it wasn't surgery.
>
>Thanks for Listening
>Take Care
>Carol
>
=========================================================================
Date:         Thu, 6 Feb 1997 07:03:56 -0800
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Longshot & Darwin <Longshot.Darwin@MCI2000.COM>
Subject:      Re: Dr. Upton's Book
In-Reply-To:  <c6a59fea.34d9199f@aol.com>
MIME-version: 1.0
Content-type: text/plain; X-MAPIextension=.TXT; charset=US-ASCII
Content-transfer-encoding: 7bit

Lynn,

    Will you please also put me on your list for Dr. Upton's Book?..I will
also pay any shipping charges. Thanks.

Rachel
longshot.darwin@mci2000.com
=========================================================================
Date:         Fri, 6 Feb 1998 08:45:56 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: Sleep Study
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit

Carol,

Jordan has had 2 slep studies done. The first he was a few weeks old and still
in NICU so he was oblivious to all around him. The second was at Christmas,
and they were doing it b/c I thought his nasal passages were too narrow..he
would get frustrated trying to eat b/c his nose was either stuffy or blocked.
Hooking him up was very traumatic. He has a temper anyway, and this brought it
out.The worst was when they hooked up the nasal cannula b/c it took up so much
space in his nose and he couldn't get any air past. He screamed forever, and
the tech sent me home (we live 10 mins. from the ChildrensHospital) b/c it was
easier for them to get him to sleep if he knew I was gone. Sure enough he
settled down, but had a restless night of sleep. This is not a procedure I
look forward to repeating, at least not until hes older. The little girl, next
door to him, was like 5 or 6 and did great. But you can't reason w/ an infant.
Oh, his study came back fine..I'm sure someone else can inform you about what
happens if thats not the case!

Get some rest!!!!
Jenn (Tampa/St. Pete)
=========================================================================
Date:         Fri, 6 Feb 1998 08:54:33 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: Up Date
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit

 Well, what a relief to hear how well Billy has done. I was waiting anxiously
for the word. Hopefully he will be home soon. We are heading down the
homestretch ourselves..trying to keep busy. So far it a go for Tues. morning.
Please say a prayer for not only Jordan, but for my sanity as well. I think
I'll be fine until they take him from us. UHHH..I try not to even think about
it!!

Jenn
=========================================================================
Date:         Fri, 6 Feb 1998 09:39:08 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:         Resa and Mark Pace <Copperhd87@AOL.COM>
Subject:      Mitchell's craniosynostosis
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit

     Hi!  We are new to the list server as of today.  Our family has a 12 year
old daughter, Rebecca, a 10 year old son, Stephen, and a 13 month old son,
Mitchell.
     Mitchell had surgery to correct saggital craniosynostosis when he was 3
months old.  His surgery was done by a pediatric neurosurgeon here in Oklahoma
City.
    Now we are being told that he needs a second operation.  We are so upset
that we are going to have to do this again.
     We are trying to find out some information about the pediatric
neurosurgeon at Children's Hospital here in Oklahoma City.  His name is Paul
Francel and he has studied with Dr. Marsh of St. Louis.  Dr. Francel also
worked with a Dr. John Jane.  He would be doing the surgery with a plastic
surgeon, Dr. Pancal, who also studied with Dr. Marsh.  Dr. Francel was
formerly with the University of Virginia.
    He wants to do what he calls a complete restructuring of Mitchell's skull
and use the dissolvable acrylic plates.  He claims he has never lost a patient
or that new brain damage has occured due to his surgery.  He also says this
will be the last surgery necessary.
     In two weeks with have an appointment in Dallas with Dr. Salyer in
Medical City.  We have heard both good and bad about Dr. Salyer.
     We would appreciate hearing from anyone that might know something about
these doctors.  We would like to make a better decision this time than we did
last spring.
     Dr. Marsh in St. Louis does not have any openings till the middle of
March.  Should we hold out for one of those?

Thank you,
Resa and Mark Pace
=========================================================================
Date:         Thu, 5 Feb 1998 23:26:16 -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:         Elizabeth de Silva <lizsilva@SRV1.TELCONET.NET>
Subject:      Re: Up Date
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit

> . He is a brave and strong little boy and
> we are blessed that god let us have this wonderful little guy.
> The Fosters

Indeed he is!!! Great for Billy!!!  Keep us updated.

Liz.
=========================================================================
Date:         Fri, 6 Feb 1998 11:39:07 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: An Update
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit

Margorie,

I am glad to hear that BJ is doing better with the shunt and am hoping for you
that the shunt will indeed be put internally again.  I know that this is very
hard, but BJ is a strong, determined little boy as well as his parents.  I
know that everyone will get through this and it will all get better.  Just
look toward the day that BJ comes back home again.  Nothing about this
syndrome is easy, but there is definately light at the end of the tunnel when
we can all look back and say, "Whew its finally over".  Love to everyone in
your family, especially you, your husband and BJ.  The Thornquist prayers are
with you always.

Good luck,

The Thornquist Family
(Rich, Lynn, & Andrew)
=========================================================================
Date:         Fri, 6 Feb 1998 11:55:15 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: Mitchell's craniosynostosis
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit

Resa & Mark,

Welcome to the family.  I am Lynn, my husband, Rich, and our son Andrew.
Andrew was born with Apert Syndrome on 9/5/96.  Andrew had the posterior part
of his skull rebuilt when he was 3 months old.  They took what they could
salvage from the back and shaved some small pieces of bone off the top and
strategically placed them so they have now grown together to make one large
bone.  His surgeons are remarkable.

I'm sorry but I do not know anything about the doctors you mentioned, but I
will keep my ears open.  I am sure that you will find this place as wonderful
and supportive as I have.  Ask a question, and an answer you shall receive.

Welcome to you and your family.

The Thornquists
(Rich, Lynn & Andrew)
=========================================================================
Date:         Fri, 6 Feb 1998 12:32:44 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: Mitchell's craniosynostosis
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit

Welcome to the list.My name is Jennifer Graham and my son Jordan is about to
undergo his first cranial surgery on Tuesday. Hes almost 5 mos. I think you
will find several people very pleased w/ Dr. Marsh's work, ther are several
people who also see Dr. Sargent in Tenn. and I know several of the members go
to Dallas, although I'm not sure who they see. I highly reccomend our
neurosurgeon (Louis Solomon) and plastic surgeon (Ernesto Ruas) here in Tampa.
Although I haven't seen Jordans final result, everyone who has used them has
had no complaints. The past 4 mos. they have been saviors to us, but I think
there are good doctores everywhere, as I am sure everyone here will attest to.
I think we all love our individual docs.

Good luck on your search, and let me know if I can put you in touch with
either of my sons doctors.

Jennifer Graham (Tampa/St. Pete)
=========================================================================
Date:         Fri, 6 Feb 1998 00:19:49 -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:         Elizabeth de Silva <lizsilva@SRV1.TELCONET.NET>
Subject:      Re: An Update
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit

Dear Marjorie, David and BJ,  you are amazing. Your strong espirit
inspire us.  I know God is blessing you all.  You are in our prays.

Elizabeth
=========================================================================
Date:         Fri, 6 Feb 1998 13:25:35 EST
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Jennifer Graham <Jenngram@AOL.COM>
Subject:      Fwd: Fw: Fw: The Gift (fwd) -Reply
Mime-Version: 1.0
Content-type: multipart/mixed; boundary="part0_886789536_boundary"

This is a multi-part message in MIME format.

--part0_886789536_boundary
Content-ID: <0_886789536@inet_out.mail.aol.com.1>
Content-type: text/plain; charset=US-ASCII

Thought this was a nice story ya'll would enjoy

Jenn

--part0_886789536_boundary
Content-ID: <0_886789536@inet_out.mail.aol.com.2>
Content-type: message/rfc822
Content-transfer-encoding: 7bit
Content-disposition: inline

From: Valdezman@aol.com
Return-path: <Valdezman@aol.com>
To: Jenngram@aol.com, RRR1540@aol.com
Subject: Fwd: Fw: Fw: The Gift (fwd) -Reply
Date: Fri, 6 Feb 1998 09:57:44 EST
Organization: AOL (http://www.aol.com)
Mime-Version: 1.0
Content-type: multipart/mixed;
        boundary="part1_886789536_boundary"

--part1_886789536_boundary
Content-ID: <0_886789536@inet_out.mail.aol.com.3>
Content-type: text/plain; charset=US-ASCII

Interesting... a lesson most of us could use. P

--part1_886789536_boundary
Content-ID: <0_886789536@inet_out.mail.aol.com.4>
Content-type: message/rfc822
Content-transfer-encoding: 7bit
Content-disposition: inline

Return-Path: <TWard@oppenheimerfunds.com>
Received: from  relay27.mail.aol.com (relay27.mail.aol.com [172.31.109.27]) by
        air07.mail.aol.com (v38.1) with SMTP; Thu, 05 Feb 1998 11:52:36 -0500
Received: from fw.oppenheimerfunds.com (fw.oppenheimerfunds.com
        [208.203.94.2])
          by relay27.mail.aol.com (8.8.5/8.8.5/AOL-4.0.0)
          with ESMTP id LAA29254 for <Cheezman99@aol.com>;
          Thu, 5 Feb 1998 11:52:28 -0500 (EST)
Received: from mfil.terminal (mfil@localhost)
        by fw.oppenheimerfunds.com with SMTP id JAA18816
        for <Cheezman99@aol.com>; Thu, 5 Feb 1998 09:34:38 -0700 (MST)
Received: from oppenheimerfunds.com (mailgw.oppenheimerfunds.com
        [172.16.10.4])
        by fw.oppenheimerfunds.com with SMTP id JAA18666
        for <Cheezman99@aol.com>; Thu, 5 Feb 1998 09:34:07 -0700 (MST)
Received: from DENDATA-Message_Server by oppenheimerfunds.com
        with Novell_GroupWise; Thu, 05 Feb 1998 09:34:03 -0700
Message-Id: <s4d9878b.009@oppenheimerfunds.com>
X-Mailer: Novell GroupWise 4.1
Date: Thu, 05 Feb 1998 09:36:14 -0700
From: Teresa Ward <TWard@oppenheimerfunds.com>
To: Cheezman99@aol.com
Subject: Fwd: Fw: Fw: The Gift (fwd) -Reply
Content-Disposition: inline
Mime-Version: 1.0
Content-type: multipart/mixed;
        boundary="part2_886789536_boundary"

--part2_886789536_boundary
Content-ID: <0_886789536@inet_out.mail.aol.com.5>
Content-type: text/plain; charset=US-ASCII
 

--part2_886789536_boundary
Content-ID: <0_886789536@inet_out.mail.aol.com.6>
Content-type: message/rfc822
Content-transfer-encoding: 7bit
Content-disposition: inline

Return-Path: <TWard@oppenheimerfunds.com>
Received: from  relay27.mail.aol.com (relay27.mail.aol.com [172.31.109.27]) by
        air07.mail.aol.com (v38.1) with SMTP; Thu, 05 Feb 1998 11:52:36 -0500
Received: from fw.oppenheimerfunds.com (fw.oppenheimerfunds.com
        [208.203.94.2])
          by relay27.mail.aol.com (8.8.5/8.8.5/AOL-4.0.0)
          with ESMTP id LAA29254 for <Cheezman99@aol.com>;
          Thu, 5 Feb 1998 11:52:28 -0500 (EST)
Received: from mfil.terminal (mfil@localhost)
        by fw.oppenheimerfunds.com with SMTP id JAA18816
        for <Cheezman99@aol.com>; Thu, 5 Feb 1998 09:34:38 -0700 (MST)
Received: from oppenheimerfunds.com (mailgw.oppenheimerfunds.com
        [172.16.10.4])
        by fw.oppenheimerfunds.com with SMTP id JAA18666
        for <Cheezman99@aol.com>; Thu, 5 Feb 1998 09:34:07 -0700 (MST)
Received: from DENDATA-Message_Server by oppenheimerfunds.com
        with Novell_GroupWise; Thu, 05 Feb 1998 09:34:03 -0700
Message-Id: <s4d9878b.009@oppenheimerfunds.com>
X-Mailer: Novell GroupWise 4.1
Date: Thu, 05 Feb 1998 09:36:14 -0700
From: Teresa Ward <TWard@oppenheimerfunds.com>
To: Cheezman99@aol.com
Subject: Fwd: Fw: Fw: The Gift (fwd) -Reply
Content-Disposition: inline
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit

This is a very sweet story.  Happy Valentine's Day!
 

John Blanchard stood up from the bench, straightened his Army
     uniform, and studied the crowd of people making their way through
     Grand Central Station.  He looked for the girl whose heart he knew,
     but whose
     face he didn't, the girl with the rose. His interest in her had  begun
     thirteen months before in a Florida library.  Taking a book off the
     shelf he found himself intrigued, not with the words of the book, but
     with the notes penciled in the margin.  The soft handwriting reflected
     a thoughtful soul and insightful mind. In
     the front of the book, he discovered the previous owner's name, Miss
     Hollis Maynell. With time and effort he located her address.  She
     lived in New York City.  He wrote her a letter introducing himself
     and  inviting her to correspond.  The next day he was shipped
overseas
     for service in World War II.  During the next year and one month the
     two grew to know each  other through the mail.  Each letter was a
seed
     falling on a  fertile heart.  A romance was budding. Blanchard
     requested a photograph, but  she
     refused. She felt that if he really cared, it wouldn't matter what she
      looked like.
     When the day finally came for him to return from Europe, they
     scheduled their first meeting - 7:00 PM at the Grand Central Station
     in  New  York. "You'll recognize me," she wrote, "by the red rose I'll
     be wearing on my lapel."
     So at 7:00 he was in the station looking for a girl whose heart he
     loved, but whose face he'd never seen. I'll let Mr. Blanchard tell you
     what happened:
     A young woman was coming toward me, her figure long and slim. Her
     blonde hair lay back in curls from her delicate ears; her eyes were
     blue as flowers. Her lips and chin had a gentle firmness, and in her
     pale green suit she was like springtime come alive.  I started toward
     her, entirely forgetting to notice that she was not wearing a rose.
     As I moved, a small, provocative smile curved her lips. "Going my
way,
     sailor?" she murmured. Almost uncontrollably I made one step  closer
     to her, and then I saw Hollis Maynell.  She was standing almost
     directly behind the girl.  A woman well past 40, she had graying hair
     tucked under a worn hat..  She was more than plump, her
thick-ankled
     feet thrust into low-heeled shoes.
     The girl in the green suit was walking quickly away.  I felt as though
     I was split in two, so keen was my desire to follow her, and yet so
     deep was my longing for the woman whose spirit had truly
companioned
     me and upheld my own. And there she stood.  Her pale, plump face
was
     gentle and sensible, her gray eyes had a warm and kindly twinkle. I
     did not hesitate.  My fingers gripped the small worn blue leather
     copy of the book that was to identify me to her.  This would not be
     love, but it would be something precious,  something perhaps even
     better than love, a friendship for which I had been and must ever be
     grateful.
     I squared my shoulders and saluted and held out the book to the
woman,
     even though while I spoke I felt choked by the bitterness of my
     disappointment. "I'm Lieutenant John Blanchard, and you must be Miss
     Maynell.  I am so glad you could meet me; may I take you to dinner?"
     The woman's face broadened into a tolerant smile.  "I don't  know
what
     this is about, son," she answered, "but the young lady in the green
     suit who just went by, she begged me to wear this rose on my coat.
     And
     she said if you were to ask me out to dinner, I should go and tell you
     that she is waiting for you in the big restaurant across the street.
     She said it was some kind of test!"
     It's not difficult to understand and admire Miss Maynell's wisdom.
     Thetrue nature of a heart is seen in its response to the unattractive.
     "Tell me whom you love," Houssaye wrote, "And I will tell you who
you
     are."
 

--part2_886789536_boundary--

--part1_886789536_boundary--

--part0_886789536_boundary--
=========================================================================
Date:         Fri, 6 Feb 1998 08:45:27 -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:         Scott Pengelly <scottp@EUGENE.COM>
Subject:      Congratulations, Billy & Fosters
Mime-Version: 1.0
Content-Type: text/enriched; charset="us-ascii"

Good morning to the Fosters and BillY:
 

Congratulations and good going.
 

All the best and

love,

Scott

Scott Pengelly, Ph.D.

<italic>Head Coach

</italic>1374 Willamette Street

<paraindent><param>out,out</param>Suite 6

</paraindent>Eugene, Oregon  97401-4075

(voice) 541.343.3218

email: scottp@eugene.com
=========================================================================
Date:         Fri, 6 Feb 1998 08:48:24 -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:         Scott Pengelly <scottp@EUGENE.COM>
Subject:      BJ, Marjorie and David
Mime-Version: 1.0
Content-Type: text/enriched; charset="us-ascii"

Good morning:

Thanks for the update about BJ.  You guys are my heros.

You are in my thoughts and prayers. You're fighting

a good fight.
 

All the best and

Love, Scott

Scott Pengelly, Ph.D.

<italic>Head Coach

</italic>1374 Willamette Street

<paraindent><param>out,out</param>Suite 6

</paraindent>Eugene, Oregon  97401-4075

(voice) 541.343.3218

email: scottp@eugene.com
=========================================================================
Date:         Fri, 6 Feb 1998 22:52:58 -0400
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Kerri Hedinger <khedinger@NS.GEMLINK.COM>
Subject:      Re: JUST YAKKIN'
MIME-Version: 1.0
Content-Type: multipart/alternative;
              boundary="----=_NextPart_000_0032_01BD3351.F8B941A0"

This is a multi-part message in MIME format.

------=_NextPart_000_0032_01BD3351.F8B941A0
Content-Type: text/plain;
        charset="iso-8859-1"
Content-Transfer-Encoding: quoted-printable

Lori,

Yes, it does!!!  Devin had to be admitted Tues. night to the hospital.  =
He was dehydrated and tested positive for RSV.  It is a viral infection =
that attacks the lungs in small children and really wipes them out.  =
They were really concerned that he may have spinal menegitis but the =
spinal tap came back negative. (Thank God!!)  He spent two nights in =
isolation with IV's.  They ended up using the head for the site because =
they poked and poked and couldn't get a line but I warned them that it =
wasn't going to be easy.  He is home now with 101.0 fever but there is =
really nothing I can do but keep pumping the Tylenol and make him as =
comfortable as possible.  They said the wheezing in his lungs could last =
up to 5-6 weeks.  Poor little fellow is totally exhausted. (ME TOO!!!!)=20
We are rescheduled for his surgery March 5th.  I am going to hibernate =
until then and hopefully he won't get sick again.  We'll just have to =
wait and see.  Kinda' like a hurry up and wait game it seems lately.
Thank you for the support it really does help.  Please let me know how =
things went for you all in at Dr. Sargent's.

Kerri
    -----Original Message-----
    From: Judith V. Parks <jvparks@MIDAMER.NET>
    To: APERT@LISTSERV.AOL.COM <APERT@LISTSERV.AOL.COM>
    Date: Wednesday, February 04, 1998 3:51 PM
    Subject: JUST YAKKIN'
   =20
   =20
    Kerry,
   =20
    Just wanted to remind you everything happens for a reason.  Shannon =
(my husband) and I joke---Before Levi was born, he was sittin' up there =
talkin' to the BIG GUY and justa' thumbin though the mom and dad =
catalog.  Out of all the moms and dads in the whole catalog.....he chose =
us!  He new he would have a loving supportive family and a mommy and =
daddy who would love him very much.
    The big guy knew we could handle the load(he wont give yu a load yu =
can't handle)---For some unknown reason it isn't the right time for =
Devins' sugery.  Hey, when I'm upset when Levi has setbacks--remind me =
of my own advice.  I don't know what you're feelin' as of yet.(..Those =
days are comin' soon enough) but when I do know what you're feelin', =
I'll be awful glad I can get on here and jabber. =20
    I'll be thinkin' of ya'll--I'll let yu know bout' our trip.
    Lori
 

------=_NextPart_000_0032_01BD3351.F8B941A0
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><!DOCTYPE HTML PUBLIC "-//W3C//DTD W3 =
HTML//EN">
<META content=3D'"MSHTML 4.72.2106.6"' name=3DGENERATOR>
</HEAD>
<BODY bgColor=3D#f0e8d8>
<DIV><FONT color=3D#000000 size=3D2>Lori,</FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2></FONT>&nbsp;</DIV>
<DIV><FONT size=3D2>Yes, it does!!!&nbsp; Devin had to be admitted Tues. =
night to=20
the hospital.&nbsp; He was dehydrated and tested positive for RSV.&nbsp; =
It is a=20
viral infection that attacks the lungs in small children and really =
wipes them=20
out.&nbsp; They were really concerned that he may have spinal menegitis =
but the=20
spinal tap came back negative. (Thank God!!)&nbsp; He spent two nights =
in=20
isolation with IV's.&nbsp; They ended up using the head for the site =
because=20
they poked and poked and couldn't get a line but I warned them that it =
wasn't=20
going to be easy.&nbsp; He is home now with 101.0 fever but there is =
really=20
nothing I can do but keep pumping the Tylenol and make him as =
comfortable as=20
possible.&nbsp; They said the wheezing in his lungs could last up to 5-6 =

weeks.&nbsp; Poor little fellow is totally exhausted. (ME=20
TOO!!!!)&nbsp;</FONT></DIV>
<DIV><FONT size=3D2>We are rescheduled for his surgery March 5th.&nbsp; =
I am going=20
to hibernate until then and hopefully he won't get sick again.&nbsp; =
We'll just=20
have to wait and see.&nbsp; Kinda' like a hurry up and wait game it =
seems=20
lately.</FONT></DIV>
<DIV><FONT size=3D2>Thank you for the support it really does help.&nbsp; =
Please=20
let me know how things went for you all in at Dr. =
Sargent's.</FONT></DIV>
<DIV><FONT size=3D2></FONT>&nbsp;</DIV>
<DIV><FONT size=3D2>Kerri</FONT></DIV>
<BLOCKQUOTE=20
style=3D"BORDER-LEFT: #000000 solid 2px; MARGIN-LEFT: 5px; PADDING-LEFT: =
5px">
    <DIV><FONT face=3DArial size=3D2><B>-----Original =
Message-----</B><BR><B>From:=20
    </B>Judith V. Parks &lt;<A=20
    =
href=3D"mailto:jvparks@MIDAMER.NET">jvparks@MIDAMER.NET</A>&gt;<BR><B>To:=
=20
    </B><A =
href=3D"mailto:APERT@LISTSERV.AOL.COM">APERT@LISTSERV.AOL.COM</A>=20
    &lt;<A=20
    =
href=3D"mailto:APERT@LISTSERV.AOL.COM">APERT@LISTSERV.AOL.COM</A>&gt;<BR>=
<B>Date:=20
    </B>Wednesday, February 04, 1998 3:51 PM<BR><B>Subject: </B>JUST=20
    YAKKIN'<BR><BR></DIV></FONT>
    <DIV>Kerry,</DIV>
    <DIV>&nbsp;</DIV>
    <DIV>Just wanted to remind you everything happens for a =
reason.&nbsp;=20
    Shannon (my husband) and I joke---Before Levi was born, he was =
sittin' up=20
    there talkin' to the BIG GUY and justa' thumbin though the mom and =
dad=20
    catalog.&nbsp; Out of all the moms and dads in the whole =
catalog.....he=20
    chose us!&nbsp; He new he would have a loving supportive family and =
a mommy=20
    and daddy who would love him very much.</DIV>
    <DIV>The big guy knew we could handle the load(he wont give yu a =
load yu=20
    can't handle)---For some unknown reason it isn't the right time for =
Devins'=20
    sugery.&nbsp; Hey, when I'm upset when Levi has setbacks--remind me =
of my=20
    own advice.&nbsp; I don't know what you're feelin' as of =
yet.(..Those days=20
    are comin' soon enough) but when I do know what you're feelin', I'll =
be=20
    awful glad I can get on here and jabber.&nbsp;&nbsp;</DIV>
    <DIV>I'll be thinkin' of ya'll--I'll let yu know bout' our =
trip.</DIV>
    <DIV>Lori</DIV>
    <DIV>&nbsp;</DIV></BLOCKQUOTE></BODY></HTML>

------=_NextPart_000_0032_01BD3351.F8B941A0--
=========================================================================
Date:         Fri, 6 Feb 1998 23:11:42 -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: CHECKING ON DEVIN
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
Content-Transfer-Encoding: 7bit

Denise,
Thanks for checking on Devin.  He was admitted to the hospital Tues. night
for RSV which is a viral infection that attacks the lungs in very small
children and takes its toll.  He had become mildly dehydrated.  They thought
that he had spinal menengitis but the spinal tap came back negative.. By the
time he got into a room the little man was totally out of it.  They turned
him every which way but loose.  He pretty much just quit fighting after
about 6 hours of non-stop sticking, probing, poking etc.  Thank god for
those nice veins on his head!
He spent two days in isolation because the virus is very contaigous. He was
sent home today on Amox. for an ear infection.  He is still running a fever
of 101.0 this evening but there is nothing I can do but give him Tylenol and
keep him comfortable because the RSV is viral.
I'm SOOOOO tired!  Almost to tired to sleep.  They said that he could keep
wheezing up to 5-6 weeks.  I hope not because we are reschedule for March
5th and as you know they will want his lungs clear.  Please pray for us that
he is clear by then.
I will go now.  Maybe I can get some sleep.  HA!HA!

Kerri
-----Original Message-----
From: Chad & Denise Graham <cgraham@INFOAVE.NET>
To: APERT@LISTSERV.AOL.COM <APERT@LISTSERV.AOL.COM>
Date: Thursday, February 05, 1998 2:23 PM
Subject: CHECKING ON DEVIN
 

>        KERRI,
>        I was just wanting to check on you and Devin.  I am sure today has
>been very hard on you.  When will Devin be rescheduled?  I hope he is
>feeling better.  If you need to talk just call me collect!!  I am thinking
>of you and keeping you guys in our prayers!
>
>BJ and family, you are in our prayers, too!!!!!!!!
>
>                                God Bless,
>                                Denise Graham
>
=========================================================================
Date:         Fri, 6 Feb 1998 23:16:02 -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: The Book!!!
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
Content-Transfer-Encoding: 7bit

Lynn,

I would like to get  the book.  My E-Mail is khedinger@ns.gemlink.com .

Thanks,
Kerri
-----Original Message-----
From: Lynn Thornquist <Thornq@AOL.COM>
To: APERT@LISTSERV.AOL.COM <APERT@LISTSERV.AOL.COM>
Date: Thursday, February 05, 1998 9:34 AM
Subject: The Book!!!
 

>Just to let everyone know, I am going to take a few days and compile a list
>and get all the pertinent information and then send out individual e-mails
to
>everyone who wants THE BOOK!!!! When I give the cost, I will include
shipping
>charges as well.
>
>IT IS THE ACTUAL BOOK, NOT A COPY!!!!!!!!
>
>Beth,
>
>Dr. Upton said that he was not sure what volume, I will let you know.
>
>Camous,
>
>Send me your e-mail address so I may put it on my list.
>
>I'm glad I can help everyone out.  I guess I will be getting to know the
men
>at the post office very well.  Talk to everyone real soon.
>
>Lynn
>
=========================================================================
Date:         Fri, 6 Feb 1998 23:24:58 +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!

We got slamed with a nasty ice storm, like a lot of other states, this
week.  I took my life into my hands trying to get from my door to the car
and to the door at work only to have my director yell at me and ask what
I was doing there!  I guess dedication isn't in her vocabulary.  B.J. is
and always be in my prayers.  Hope he's still progressing!  Congrats to
Billy!  Hope he too continues upward and to better health!

Still no news about the job hunt.  This is one situation where the phrase
"No news is good news" does not apply!

Hope all is well!

Joanne, in Ohio

_____________________________________________________________________
You don't need to buy Internet access to use free Internet e-mail.
Get completely free e-mail from Juno at http://www.juno.com
Or call Juno at (800) 654-JUNO [654-5866]
=========================================================================
Date:         Sat, 7 Feb 1998 00:43:34 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:         Lynn Thornquist <Thornq@AOL.COM>
Subject:      Re: Fw: Fw: The Gift (fwd) -Reply
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit

Jenn,

Where did you get that?  I would love a copy of it or where I might find it.
That was so beautiful it actually brought a tear to my eye.

Lynn
=========================================================================
Date:         Sat, 7 Feb 1998 02:53:36 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:         Juile and Bob Sanchez <JSanc10676@AOL.COM>
Subject:      Good news...
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit

Hello,
I quietly check in every now and again and catch up
with everyones lives but this time I have great news from
our family and wanted to share it.
Our son A.J., after 5 and a half years of having a trach tube
to assist his breathing, finally had it removed last week.
He is doing very well and is enjoying his freedom and
independence.  (He has always had one of us or a nurse
with him)
With just a bandage to cover the actual hole, he is just
wants to go and go.  We were not sure this day would
really ever come but everything finally came together.
He is really amazing!
Of course, as we all know, all of our kids are amazing!
So on to bigger and better things.

Julie Sanchez
=========================================================================
Date:         Sat, 7 Feb 1998 07:10:22 -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:         TIM <timg@BELLSOUTH.NET>
Organization: Home
Subject:      Re: Good news...
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit

Julie..
I know how excited and happy you are !! Nicholas had his trach for
almost 5 yrs and what a great day it was when he got it out !!
Congratulations !!!
Carol Graves

Juile and Bob Sanchez wrote:

> Hello,
> I quietly check in every now and again and catch up
> with everyones lives but this time I have great news from
> our family and wanted to share it.
> Our son A.J., after 5 and a half years of having a trach tube
> to assist his breathing, finally had it removed last week.
> He is doing very well and is enjoying his freedom and
> independence.  (He has always had one of us or a nurse
> with him)
> With just a bandage to cover the actual hole, he is just
> wants to go and go.  We were not sure this day would
> really ever come but everything finally came together.
> He is really amazing!
> Of course, as we all know, all of our kids are amazing!
> So on to bigger and better things.
>
> Julie Sanchez
=========================================================================
Date:         Sat, 7 Feb 1998 08:39:36 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: Fw: Fw: The Gift (fwd) -Reply
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit

Lynn,

I'll have to ask my mom about "The Gift". She e-mailed it to me, and it was
forwarded to her. I'll get back to you about it.

Hope everyone up in the northern states is keeping warm. Its really cold all
the way down here, so I can imagine what its like there.

Joanne...keep on looking, something will happen

Heres hoping BJ is improving and will once again be home soon!!

Jenn (Tampa/St. Pete)
=========================================================================
Date:         Sat, 7 Feb 1998 08:40:57 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: Good news...
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit

Julie,

Congratulation to AJ on this major step. Now there will be no stopping him!!!
We are so happy for him..and ya'll!!!
 

Jenn(Tampa/St. Pete)
=========================================================================
Date:         Sun, 8 Feb 1998 09:15:43 -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:         Alice Lynch <goddess@CAPITAL.NET>
Subject:      Re: Mitchell's craniosynostosis
MIME-Version: 1.0
Content-Type: text/plain; charset=ISO-8859-1
Content-Transfer-Encoding: 7bit

Hi! My name is Alice and my son, Colin has Aperts.  We use Dr. Marsh and in
a minute with no reservations I would say hold out for Dr. Marsh.  He is
wonderful.

Good luck, Alice

----------
> From: Resa and Mark Pace <Copperhd87@AOL.COM>
> To: APERT@LISTSERV.AOL.COM
> Subject: Mitchell's craniosynostosis
> Date: Friday, February 06, 1998 9:39 AM
>
>      Hi!  We are new to the list server as of today.  Our family has a 12
year
> old daughter, Rebecca, a 10 year old son, Stephen, and a 13 month old
son,
> Mitchell.
>      Mitchell had surgery to correct saggital craniosynostosis when he
was 3
> months old.  His surgery was done by a pediatric neurosurgeon here in
Oklahoma
> City.
>     Now we are being told that he needs a second operation.  We are so
upset
> that we are going to have to do this again.
>      We are trying to find out some information about the pediatric
> neurosurgeon at Children's Hospital here in Oklahoma City.  His name is
Paul
> Francel and he has studied with Dr. Marsh of St. Louis.  Dr. Francel also
> worked with a Dr. John Jane.  He would be doing the surgery with a
plastic
> surgeon, Dr. Pancal, who also studied with Dr. Marsh.  Dr. Francel was
> formerly with the University of Virginia.
>     He wants to do what he calls a complete restructuring of Mitchell's
skull
> and use the dissolvable acrylic plates.  He claims he has never lost a
patient
> or that new brain damage has occured due to his surgery.  He also says
this
> will be the last surgery necessary.
>      In two weeks with have an appointment in Dallas with Dr. Salyer in
> Medical City.  We have heard both good and bad about Dr. Salyer.
>      We would appreciate hearing from anyone that might know something
about
> these doctors.  We would like to make a better decision this time than we
did
> last spring.
>      Dr. Marsh in St. Louis does not have any openings till the middle of
> March.  Should we hold out for one of those?
>
> Thank you,
> Resa and Mark Pace
=========================================================================
Date:         Sat, 7 Feb 1998 09:53:59 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:         Tony & Sandy Deakins <TDeakins1@AOL.COM>
Subject:      Re: sweating
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit

We live in Orlando and our daughter, Casey, is a 12 year old Aperts child.
After Dr. Habal's (Tampa Bay Cranio Facial Clinic) last (and probably final)
surgery, you wouldn't know it to look at her, though.  Sweating, however, is a
very common trait of Apert's and Casey suffers with that.  The feet are
particularly a problem in that Apert's kids are also typically allergic to
their own seat and, where it collects, can cause a nasty rash or skin
infection.   It has taken us years to figure out how to deal with it, a
problem made worse by the Florida climate and Casey's tendency to be very
outdoors oriented.
Tony Deakins
=========================================================================
Date:         Sat, 7 Feb 1998 10:02:44 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:         Karen Kirby-Hall <Unclbennie@AOL.COM>
Subject:      Re: The Book!!!
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit

I would be interested in getting "The Book"  I would love to give it to the
parent that I'm working with.
Karen Kirby-Hall RN
e-mail Unclbennie@aol.com
=========================================================================
Date:         Sat, 7 Feb 1998 10:32:00 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:         Lynn Thornquist <Thornq@AOL.COM>
Subject:      Re: Good news...
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit

Julie,

I am really happy to hear about AJ's good news.  That is really great!!!!  And
you are right, our kids are special little ones.  Lots of love and luck to
your family from ours.

The Thornquists
(Rich, Lynn & Andrew)
=========================================================================
Date:         Sat, 7 Feb 1998 14:55:44 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: Good news...
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit

Julie,

Congratulations to you and to A.J.  That is great news.  Our kids truly are
special.
 

Janine (Emily's Mom)
=========================================================================
Date:         Sat, 7 Feb 1998 14:57:49 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:         Janine Krebs <Yonstein@AOL.COM>
Subject:      Re: JUST YAKKIN'
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit

Kerri,

Sorry to hear Devin was so sick.  Glad to hear he's back home with you.
Hope he recoups fast and stays well for March's surgery.
 

Janine
=========================================================================
Date:         Sat, 7 Feb 1998 15:02:16 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:         Janine Krebs <Yonstein@AOL.COM>
Subject:      Re: Mitchell's craniosynostosis
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit

WELCOME to the Pace family.  I can't help you out with any of y
=========================================================================
Date:         Sat, 7 Feb 1998 15:04:03 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: Mitchell's craniosynostosis
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit

sorry about that.  I can't help you out with any of your doctors, but want to
welcome you to the greatest place.

I'm sure you will find it as supportive as I have.

Janine Krebs (NY)
Emily's Mom (6 mo.)
=========================================================================
Date:         Sat, 7 Feb 1998 15:04:50 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:         Janine Krebs <Yonstein@AOL.COM>
Subject:      Re: Up Date
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit

Glad to hear Billy is doing well.
 

Janine Krebs
=========================================================================
Date:         Sat, 7 Feb 1998 14:28:12 -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: Good news...
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"

Julie, congratulations to A.J. and you.  That is wonderful news.  A big
hurdle overcome.  It must be such a nice feeling for A.J. to be free of the
trach. No wonder he wants to do everything!  Must be such a nice feeling
for all of you.

Take care, Robyn & the Plum
Eugene, OR
 

At 02:53 AM 2/7/98 EST, you wrote:
>Hello,
>I quietly check in every now and again and catch up
>with everyones lives but this time I have great news from
>our family and wanted to share it.
>Our son A.J., after 5 and a half years of having a trach tube
>to assist his breathing, finally had it removed last week.
>He is doing very well and is enjoying his freedom and
>independence.  (He has always had one of us or a nurse
>with him)
>With just a bandage to cover the actual hole, he is just
>wants to go and go.  We were not sure this day would
>really ever come but everything finally came together.
>He is really amazing!
>Of course, as we all know, all of our kids are amazing!
>So on to bigger and better things.
>
>Julie Sanchez
>
=========================================================================
Date:         Sat, 7 Feb 1998 18:13:28 -0500
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         foster <foster@ICONTECH.COM>
Subject:      fevers
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"

Billy is healing really well,but has been running a low grade fever . The
doctors say he can come home once they figure out why. He is active and
starting to eat by mouth alittle. The doctor say they are not worried but of
course we are. Wonka has run low fevers in the past and many times blood
work showed no problem.We kind of figured out that it sometimes happens when
he is over heated. He sweats very badley.Anyone know of any reason this
might be happening? We are anxious to get him home but only when absolutley
ready.
Karen
=========================================================================
Date:         Sat, 7 Feb 1998 18:25:08 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:         AOL User <MHTeach102@AOL.COM>
Subject:      Re: Good news...
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit

Julie and Bob,
That is not just good news it is Great News. I hope someday I can say the same
thing BJ has had his trache for 5 years now, and it is hard to say when he
will get his out. But I keep praying for that day to come.

Marjorie

Give AJ a great big hug and high five for us.
=========================================================================
Date:         Sat, 7 Feb 1998 15:58:40 -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:         Scott Pengelly <scottp@EUGENE.COM>
Subject:      Congratulations, Billy and family
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"

Good afternoon Karen and the Fosters

Congratulations to you and to Billy.  I am so pleased.  Sounds like
you are too.

God Bless,
Scott
=========================================================================
Date:         Sat, 7 Feb 1998 19:08:08 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:         AOL User <MHTeach102@AOL.COM>
Subject:      An Update
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit

A short note,

BJ is somehow still holding on. I am more than amazed that he is still
fighting this. He is still in the Critical Care Unit of the hospital, and has
had several setbacks the past few days. His shunt has clotted and had to be
replaced again. And his Inner Cranial pressure is still very high. It became
necessary to put him on a full ventalator again yesterday. We are trying to
wait this out and hope he shows signs of recovery. The doctors put him into an
induced coma to give his system a chance to regain strength. They are running
several more tests tonight they are especially checking his liver function, he
is pale and his skin is showing tints of yellow. There is good news though his
fever is down and there doesn't seem to be any internal bleeding.

Marjorie Harmon
=========================================================================
Date:         Sat, 7 Feb 1998 20:06:24 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:         AOL User <MHTeach102@AOL.COM>
Subject:      The opening for BJ's page
Comments: To: CatnDon@aol.com
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit

Don
 I need to do something so decided to do this.
 

    Over the past six months I have had numerous oppurtunities to think about
BJ and what he has brought into my life. In the beginning I wondered what
David and I could have done to bring such a punishment from God. I always
considered ourselves to be good parents. Not that we didn't make our share of
mistakes, but our hearts were always in the right place. In time though the
resentment and anger lessened. I found myself able to pray and beleive again.
    For along time though I considered all of BJ's severe medical criseses to
be a test of our faith. I belevied that if I prayed and believed enough that
God would give us a miracle and make our precious little boy well again. The
plan seemed to be working too. BJ recovered enough to leave the hospital in
time for Christmas. It seemed to David and I that we had turned the corner and
somehow we would be a normal family again. But things aren't always as they
seem.
  The past few days  I have sat beside beside BJ's hospital bed watching the
ventalator force each breath of oxygen through BJ's lungs, and trying to offer
as much comfort as a mommies hand can give without causing pain. I had spent
the past 6 months trying to be strong for BJ, David and the other children,
that I forced myself to ignore my own feelings.  So last night I sat in the
hospital chapel trying to resolve my feelings of anger, fear, and
disappointment. Somewhere and somehow my heart seemed to calm itself. I
realize now that my precious little boy was the biggest gift of Faith and love
that God could give us.
  God gave us a gift of a child who would bring laughter, smiles and tears of
joys. It was amazing to watch BJ grow from a very sick and tiny premie into a
self confident young man. We watched in awe as BJ learned to crawl, walk and
talk (I wondered to myself if it would ever happen), We watched him become a
loving and overprotective big brother, and we watched him enter the public
school system. I wonder now if they understoood what harms their labels and
words did to him, how determined he was to show them he was not a "dummy or
retard", we watched him struggle to make his first real friend, and as he
struggled to learn to read, we struggled with him. But in time he went from
stumbling over letters and reversing words to reading Goosebumps books in one
day. We were there when he became the first disabled child in our town to play
little league, and were even more amazed when his teammates gave him the
sportmanship award.
   We have been there for every baseball and soccer game, even the ones he
couldn't play because his Asthma attacks would start. David was there when he
started boy scouts and even threatned to sue them if they didn't let BJ go on
the camping trip he and BJ had worked so hard for. We watched him grow from a
shy child to one who was very outgoing and even wanted to be in the school
play this year.
    Through each and every struggle that he faced in life, he showed us
persistence and hope. He never became depressed or agitated at the world he
met. He handled all the stares, insults and stupid questions with a smile on
his face (While Mom and Dad were ready to scream and kill people). He showed
the true meaning of forgiveness when he would run to play with the same kids
who had taunted him so much. He never seemed to show fear, from climbing the
tree in the backyard to the hospital. And he even had such a wonderous blind
faith, He told us once that God would take care of him all the time, because
didn't God take care of the caterpillar so it could grow into a butterfly. So
as you can see David, Joshua, Jacob, Katie and I have been granted 11 long
wonderful years with the greatest Gift that God could give us.
     I don't where this saga with BJ ends. But I do know that God will see us
through it So do me a favor when you put your children to bed tonight remember
to kiss your Gifts from God.

The Harmon Family
Marjorie, David, Benjamin (BJ), Joshua 8, Jacob 6 and Katie 5 Harmon

May the peace and love of God lead you through the storms and struggles of
your life.
=========================================================================
Date:         Sat, 7 Feb 1998 21:09:23 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: The opening for BJ's page
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit

Dear Marjorie:

First let me say that I hope BJ is doing well tonight.  I am sitting here
reading my mail with Emily on my lap, and you have brought me tears of joy
reading about BJ.  In such an emotional and difficult time for you, you have
managed to describe such wonderful good qualities and to give such insight
into who BJ is.  All along we have known what a truly amazing boy he is, but
this really describes it.

I think it is a great opening for BJ's page.

The other thing that is very obvious and has been all along is what a
wonderful family BJ was born into.  I believe it is the strength and love he
gets from all of you that keeps him fighting to come back home to you.

Hope you are getting some rest.  Thank you for the update.
 

Janine Krebs