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> <FONT color=3D#000000 face=3DKids size=3D2>
=
<FONT=20
face=3DArial size=3D3>Just a note of thanks for inviting us to your
=
home. It=20
is really nice to know another Apert family is so close.
I hope we =
can get=20
together again soon. Dinner was great.-- I will
keep you =
updated on=20
this next months oncoming events.---Levi was asleep before we got out
of =
your=20
driveway!! All the new stuff to look at must have wore him
=
out!-Thank you=20
so much for the pictures of Seth. ( I'll put pictures in
the mail =
of Levi=20
for you tomarrow) Seth showed us, " There is no
limit=20
"</FONT></FONT></DIV>
<DIV>Thanks again, good luck and God bless</DIV>
<DIV>Shannon, Lori and Levi </DIV>
<DIV> </DIV>
<DIV><FONT color=3D#000000 face=3DKids size=3D2><FONT face=3DArial=20
size=3D3></FONT></FONT> </DIV>
<DIV> </DIV>
<DIV> </DIV>
<DIV> </DIV>
<DIV> </DIV>
<DIV> </DIV>
<DIV> </DIV>
<DIV><FONT color=3D#000000 face=3DKids size=3D2><FONT face=3DArial
=
size=3D3> =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> </DIV>
<DIV><FONT color=3D#000000 size=3D2>We will be thinking of you
and Billy =
on his big=20
day. Good luck with everything.</FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2></FONT> </DIV>
<DIV><FONT color=3D#000000 size=3D2>Michele</FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2></FONT> </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> <FONT color=3D#000000 face=3DKids size=3D2>
<FONT =
face=3DArial=20
size=3D3>I spoke with T. Farmer this morning. She had just
talked =
to=20
yu. I hope Devin isn't real sick, she said he has a fever.
=
Let me=20
know. We'll be thinkin'of him. </FONT></FONT></DIV>
<DIV><FONT color=3D#000000 face=3DKids size=3D2><FONT face=3DArial=20
size=3D3></FONT></FONT> </DIV>
<DIV><FONT color=3D#000000 face=3DKids size=3D2><FONT face=3DArial=20
size=3D3>Marjorie,</FONT></FONT></DIV>
<DIV><FONT color=3D#000000 face=3DKids size=3D2><FONT face=3DArial
=
size=3D3> 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. </FONT></FONT></DIV>
<DIV><FONT color=3D#000000 face=3DKids size=3D2><FONT face=3DArial=20
size=3D3></FONT></FONT> </DIV>
<DIV><FONT color=3D#000000 face=3DKids size=3D2><FONT face=3DArial=20
size=3D3></FONT></FONT> </DIV>
<DIV> </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> </DIV>
<DIV><FONT size=3D2>Well, we were very disappointed about this
=
setback. We=20
had been scheduled in Nov. 1997 for this same surgery. I
had kept =
him well=20
for 3 months. He had a very restless night Sunday.
Monday =
morning=20
when he awoke he started coughing and danged if he wasn't running a
=
fever. =20
Took him to his pediatrician and he has a viral URI. No =
antibiotics=20
though. He had alot of congestion in his right lung.
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. Doris said it would be atleast
1 month =
before he=20
can be rescheduled. This will prolong his hand surgery =
again. I'm=20
trying to keep on smiling :~( Maybe we still will be able
to meet =
you guys=20
one day if you decide to stick with Dr. Sargent. Good luck
with =
your=20
evaluation and let me know how things went. Take care and
keep in=20
touch!!!!</FONT></DIV>
<DIV><FONT size=3D2></FONT> </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 <<A=20
=
href=3D"mailto:jvparks@MIDAMER.NET">jvparks@MIDAMER.NET</A>><BR><B>To:=
=20
</B><A =
href=3D"mailto:APERT@LISTSERV.AOL.COM">APERT@LISTSERV.AOL.COM</A>=20
<<A=20
=
href=3D"mailto:APERT@LISTSERV.AOL.COM">APERT@LISTSERV.AOL.COM</A>><BR>=
<B>Date:=20
</B>Monday, February 02, 1998 3:33 PM<BR><BR></DIV></FONT>
<DIV>Kerry,</DIV>
<DIV> <FONT color=3D#000000 face=3DKids
size=3D2> =
<FONT=20
face=3DArial size=3D3>I spoke with T. Farmer this
morning. She =
had just=20
talked to yu. I hope Devin isn't real
sick, she said he has a=20
fever. Let me know. We'll be
thinkin'of him. =20
</FONT></FONT></DIV>
<DIV><FONT color=3D#000000 face=3DKids size=3D2><FONT
face=3DArial=20
size=3D3></FONT></FONT> </DIV>
<DIV><FONT color=3D#000000 face=3DKids size=3D2><FONT
face=3DArial=20
size=3D3>Marjorie,</FONT></FONT></DIV>
<DIV><FONT color=3D#000000 face=3DKids size=3D2><FONT
face=3DArial =
size=3D3> 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. </FONT></FONT></DIV>
<DIV><FONT color=3D#000000 face=3DKids size=3D2><FONT
face=3DArial=20
size=3D3></FONT></FONT> </DIV>
<DIV><FONT color=3D#000000 face=3DKids size=3D2><FONT
face=3DArial=20
size=3D3></FONT></FONT> </DIV>
<DIV> </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> </DIV>
<DIV>Just wanted to remind you everything happens for a reason.
=
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.
=
Out of=20
all the moms and dads in the whole catalog.....he chose us!
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. Hey, when I'm upset when Levi has setbacks--remind
me of =
my own=20
advice. 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. </DIV>
<DIV>I'll be thinkin' of ya'll--I'll let yu know bout' our trip.</DIV>
<DIV>Lori</DIV>
<DIV> </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