Hello to all. Hope all are well and continuing to recover from
surgeries
and illnesses. We have been busy with school starting and doctor appts.
Jacob (2yrs) just had his yearly craniofacial clinic appt. last week
at
CHOP(Philly). Things went well but again we have decisions to make
and we
would like some input if possible. Jacob has not had his palate
repaired
yet because it is felt that closing it will compromise his airway more.
Geisinger, the hospital we usually deal with, wants to close it soon
(actually it is scheduled for OCT. 6a) but they want to trach Jacob
first
(even though he has been breathing better both day and night lately).
Dr.
Whitaker from CHOP (plastic surgeon) suggested leaving the palate open
for
another year to let airway grow even more and then he may not need
trached.
Also the ENT in Philly feels he could go in and open Jacob's
nose up some
but that needs done before palate repair too. We had always thought
the
palate needed closed for speech but Philly says this isn't completely
true. We have until Jacob is around four to worry about speech patterns.
Such conflicting opinions are driving me crazy! Jacob only says about
2 or
3 words that are understood. However, he has learned about 8 sign language
signs. Learns them very quickly too and uses them appropriately. Has
anyone
out there left the palate open for any length of time? Any thoughts
on what
course of action we should take? Some days I just wish someone
would make
the decisions. Making decisions about what is best has been the
hardest
part of having a child with Apert's in my opinion.
Thanks for listening.
Colleen and gang
=========================================================================
Date: Tue, 22 Sep 1998
20:44:04 EDT
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Copperhd87@AOL.COM
Subject: Stem cell transplant
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
Christine,
Our pediatrician had the stem cell transplant
almost three years ago and
is doing very well. She also had breast cancer. We wish
you all the best.
Resa Pace and family
=========================================================================
Date: Wed, 23 Sep 1998
07:54:02 EDT
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: TFinch10@AOL.COM
Subject: Re: APERT Digest - 21 Sep 1998
to 22 Sep 1998 (#1998-43)
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
Dear Colleen,
Just a bit of feedback on the way that my husband and I make some of
the
medical decisions:
1. Canvas the experts.
2. Summarize the problems. (Palate, breathing, speech, etc.)
3. Define the grey areas.
4. Figure out the pros and cons of action and contrast those with the
pros and
cons of doing nothing.
5. Figure out what risks you are willing to live with/ or take.
6. Try out your decision for a day or two before committing to it.
(Can you
sleep on it?)
7. Know that everyone has done the best they can in an area of medicine
with a
lot of unknowns.
Hope that helps. I personally hate these decisions but I'd rather be
involved
in making them than not. So... Best wishes, Jeanne in Boston
=========================================================================
Date: Wed, 23 Sep 1998
11:45:40 -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: "D. Jefferson"
<djeff@MIDWEST.NET>
Subject: Re: Seth is home:
MIME-Version: 1.0
Content-Type: text/plain; charset=ISO-8859-1
Content-Transfer-Encoding: 7bit
Dear Friends,
It has been a long seven days, however, we are home and Seth is feeling
better. He still isn't eating. I hope it is possible for
someone to live
on Chocolate Carnation Instant Breakfast because he refuses everything
else. Maybe he'll feel more like eating once the pallet and the
mouth have
healed. He will have to be on a soft diet for at least eight weeks.
This
is hard on a kid that loves raw vegetables, crackers, and fried chicken.
Although Seth is still swollen and has two black eyes, he looks great.
I
am already getting used to his new look. It is emerging slowly
so we'll
have time to adapt. It does not hurt him when I turn the screws
to advance
his mid-face. I am so thankful for that. The trach is another
thing, I
admire all of you out there that have had to deal with it. My,
my what a
pain and worry. Seth is taking it in stride but hates the noise
that the
air compressor makes. Last night he said that he felt as though
he was
sleeping in a storm. It is noisy.
My thoughts are will all of you, especially those of you preparing for
and
having surgeries.
Warmly, Dori
Dori A. Jefferson
djeff@midwest.net
=========================================================================
Date: Wed, 23 Sep 1998
20:35:45 -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: Jason Hubbard
<jason@JHUBBARD.DEMON.CO.UK>
Subject: Kidney Shape
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit
Dear All,
After a brief period off-line the Hubbards are back with a new email address - Vicky@Jhubbard.demon.co.uk
We have recently discovered that Miles has a mis-shaped kidney which
is pressing against his spleen.
Miles is almost constantly on low dose anti-biotics and has had a number
of kidney/urine infections.
Our local doctors don't seem concerned, but want to perform additional
tests.
Does anybody else have any similar experiences and what was the outcome?
Best Regards,
Vicky Hubbard
=========================================================================
Date: Wed, 23 Sep 1998
16:23:14 -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: foster <foster@ICONTECH.COM>
Subject: Seth is home
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Dori,
It is wonderful to hear that Seth is home and on the mend. How long
will he
be out of school? It is to bad that he can't eat the foods he likes,my
kids
would take chocolate over veggies anyday. It sounds like Seth is a
brave
young man having to get used to so many differt things at one time.
We will
keep him in our prayers and thoughts.
Karen(PA)
=========================================================================
Date: Wed, 23 Sep 1998
15:39:33 -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: Laurie Bailey
<jkb@ELPASO.NET>
Subject: Re: cleft palate repair
MIME-Version: 1.0
Content-Type: text/plain; charset=ISO-8859-1
Content-Transfer-Encoding: 7bit
hey Colleen,
The other Jacob's mom here. Our Jacob is about 2 1/2. He also has the
cleft
hole still open. They haven't even begun talking about repairing that
or
his split uvula. Jacob has quite a few words in his vocabulary so,
I am not
going to push for repair until they feel it's necessary. My personal
opinion is to leave alone if it is not hindering him in any way and
see
what happens.
Laurie Bailey
jkb@elpaso.net
----------
> From: Colleen Jones <coljones@PTDPROLOG.NET>
> To: APERT@LISTSERV.AOL.COM
> Subject: cleft palate repair
> Date: Tuesday, September 22, 1998 10:52 AM
>
> Hello to all. Hope all are well and continuing to recover from
surgeries
> and illnesses. We have been busy with school starting and doctor
appts.
> Jacob (2yrs) just had his yearly craniofacial clinic appt. last week
at
> CHOP(Philly). Things went well but again we have decisions to make
and we
> would like some input if possible. Jacob has not had his palate
repaired
> yet because it is felt that closing it will compromise his airway
more.
> Geisinger, the hospital we usually deal with, wants to close it soon
> (actually it is scheduled for OCT. 6a) but they want to trach Jacob
first
> (even though he has been breathing better both day and night lately).
Dr.
> Whitaker from CHOP (plastic surgeon) suggested leaving the palate
open
for
> another year to let airway grow even more and then he may not need
trached.
> Also the ENT in Philly feels he could go in and open Jacob's
nose up
some
> but that needs done before palate repair too. We had always
thought the
> palate needed closed for speech but Philly says this isn't
completely
> true. We have until Jacob is around four to worry about speech patterns.
> Such conflicting opinions are driving me crazy! Jacob only says about
2
or
> 3 words that are understood. However, he has learned about 8 sign
language
> signs. Learns them very quickly too and uses them appropriately.
Has
anyone
> out there left the palate open for any length of time? Any thoughts
on
what
> course of action we should take? Some days I just wish someone
would
make
> the decisions. Making decisions about what is best has been
the hardest
> part of having a child with Apert's in my opinion.
> Thanks for listening.
> Colleen and gang
=========================================================================
Date: Wed, 23 Sep 1998
15:41:25 -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: Laurie Bailey
<jkb@ELPASO.NET>
Subject: Re: Seth is home:
MIME-Version: 1.0
Content-Type: text/plain; charset=ISO-8859-1
Content-Transfer-Encoding: 7bit
It is wonderful that Seth is home and doing well.
Laurie Bailey
jkb@elpaso.net
----------
> From: D. Jefferson <djeff@MIDWEST.NET>
> To: APERT@LISTSERV.AOL.COM
> Subject: Re: Seth is home:
> Date: Wednesday, September 23, 1998 11:45 AM
>
> Dear Friends,
>
> It has been a long seven days, however, we are home and Seth is feeling
> better. He still isn't eating. I hope it is possible
for someone to
live
> on Chocolate Carnation Instant Breakfast because he refuses everything
> else. Maybe he'll feel more like eating once the pallet and
the mouth
have
> healed. He will have to be on a soft diet for at least eight weeks.
This
> is hard on a kid that loves raw vegetables, crackers, and fried chicken.
>
> Although Seth is still swollen and has two black eyes, he looks great.
I
> am already getting used to his new look. It is emerging slowly
so we'll
> have time to adapt. It does not hurt him when I turn the screws
to
advance
> his mid-face. I am so thankful for that. The trach is
another thing, I
> admire all of you out there that have had to deal with it.
My, my what a
> pain and worry. Seth is taking it in stride but hates the noise
that the
> air compressor makes. Last night he said that he felt as though
he was
> sleeping in a storm. It is noisy.
>
> My thoughts are will all of you, especially those of you preparing
for
and
> having surgeries.
>
> Warmly, Dori
>
> Dori A. Jefferson
> djeff@midwest.net
=========================================================================
Date: Wed, 23 Sep 1998
18:39:44 +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: jgibson2@EROLS.COM
Subject: Re: Seth is home:
In-Reply-To: <199809231643.LAA13560@cdale3.midwest.net>
MIME-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7BIT
>> It has been a long seven days, however, we are home and Seth is
feeling
> better. He still isn't eating. I hope it is possible
for someone to live
> on Chocolate Carnation Instant Breakfast because he refuses everything
> else. Maybe he'll feel more like eating once the pallet and
the mouth have
> healed. He will have to be on a soft diet for at least eight weeks.
This
> is hard on a kid that loves raw vegetables, crackers, and fried chicken.
If it's going to be very long, he'll probably
get tired of the
instant breakfast and want something else, so I wouldn't worry too
much about that. At least he's getting plenty of protein and
calcium (both necessary for healing).
My oldest just had his wisdom teeth out in August, so he
was on a
restricted diet for 2 weeks. He ate lots of Spaghettios(and
similar) that are pretty soft and added some variety to his diet.
Even the meatballs in those are pretty squishy. The canned
mini-raviolis are pretty soft too. Mostly he ate softened
ice cream
the first day or two (helped with the pain, too). He also ate
lots
of scrambled eggs once he was feeling a little better.
Judy Gibson
jgibson2@erols.com
=========================================================================
Date: Thu, 24 Sep 1998
14:19:52 +1200
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: Update on EvaJessie
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Greetings All
Pat has given permission for me to share this with you. This one
is almost unbelievable! Just when you thought you had everything
under control .......
Subject: EvaJessie's surgery postponed
Hi we are back temporarily. We got to Vancouver a couple of days
early
thinking we had pre-op on Tuesday. Well, Tuesday turned outto
be a free
day. Doug didn't order pre-op because he didn't feel she would
benefit from
it. That's the cost cutting measures in place here. They
don't spend any
more money than is necessary. And that is fine, because all they
do at
pre-op is check her vitals and take blood. Well, we already know
what blood
type she is and she is healthy. So we spent Tuesday cruising
around
Vancouver. Rick went to lunch with some business buddies and
although we
were also invivted to join the boys, EvaJessie and I decided to go
shopping.
She wanted a pretty dress and after I saw her trying to drag
her own
luggage (lugging it as it were) I decided she should have a little
case on
wheels that she can just pull along. After all she is such a
seasoned
traveller. Well, she loves this bag! And she's quite a hoot to
watch as she
tears through the airport with her tag along bag. She spent most
of the
time in the airport locking and unlocking the zipper with the tiny
keys that
came with it.
We did the usual favourite things on Tuesday afternoon: the train ride,
a visit to the kids' farm to pet the goats and rabbits. Just trying
to fill
the day to get to the next day which was surgery. We fasted according
to
instructions (EvaJessie can really go through a lot of popsicles),
arrived
at the hospital on time. She was so completely cooperative.
She told me
she would take the sleepy medicine (a tylenol-midazolam cocktail
-- the
hospital's version of designer drugs for kidlets) without a fuss
this time.
And she did. She was upbeat and cheerful. She got a little fussy
toward the
end of the wait.
I carried her into the OR, laid her on the warm table and stroked her
head and talked to her while the anesthesiologist started her IV.
I chatted
with the nurses who remembered us from last year, reminded them to
talk to
her. Very quickly EvaJessie was out. So I left, and joined
Rick to check
in with the ward expecting us after surgery. We told them we
were heading
to get some lunch and then back to Easter Seal House where we would
phone
them to check in.
We were gone less than an hour.
When we arrived at ESH, we were told to go back to the hospital because
the doctor wanted to speak to us. This is not the kind of thing
one wants
to hear at all. We go first to the ward. They send us down
to surgery.
Surgery says Evajessie is in recovery. We expected six hours;
we got ...
what .. maybe thirty minutes?
Our surgeon shows up, ushers us into a private little room. And
what
he had to tell us just about made me pass out.
They found nits from head lice in her hair.
Surgeon consulted the honcho of contagious diseases and everything
stopped there.
Meanwhile, back home her brother had also begun to scratch. They've
each had a treatment of the goop and they are scheduled for haircuts
tomorrow.
The surgeon insisted on telling us himself and thankfully, already had
a solution worked out for us. He was to have had next Friday
off, but he
was able to book an OR and put us down for the 25th in the afternoon.
WE arrived back hometo Calgary in time for EvaJessie to go to her music
lesson and my son to go to Cubs. Spent a busy weekend de lousing
the house
(how many loads of laundry is that?)
And then after washing clothes and cleaning house, tonight we are packing.
One more day, kids in school and then we are on the plane early friday
morning for a Friday afternoon surgery in Vancouver. We expect
to be back
home on Tuesday.
It's been a bizarre time here. I'm still scratching my head (pardon
the
phrase) wondering what happened.
=========================================================================
Date: Wed, 23 Sep 1998
23:05:11 EDT
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: NephiRose@AOL.COM
Subject: Re: Update on EvaJessie
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
What a hoot! And how awful! My sympathies with Pat and her
itchy family.
Hope
everything gets deloused soon. Go figure ....when everything
is going right
something is bound to go wrong. Good luck with the surgery next
week.
Belinda Vicars
Utah
=========================================================================
Date: Thu, 24 Sep 1998
00:29:16 -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: Robyn Johnston
<robyn@ORDATA.COM>
Subject: Re: Seth is home:
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Dori, glad you and Seth and family are all home. Now you can all
focus on
recovery.
I know I could live on chocolate for quite a while - heck I did diring
both
pregnancies! :-) The little guy will probably expand his
menu once he
feels a little better. You can do a lot of interesting things
with a food
processor/blender. Give it a whirl :-)
Hugs, to you all
Robyn J.
At 11:45 AM 9/23/98 -0500, you wrote:
>Dear Friends,
>
>It has been a long seven days, however, we are home and Seth is feeling
>better. He still isn't eating. I hope it is possible for
someone to live
>on Chocolate Carnation Instant Breakfast because he refuses everything
>else. Maybe he'll feel more like eating once the pallet and
the mouth have
>healed. He will have to be on a soft diet for at least eight weeks.
This
>is hard on a kid that loves raw vegetables, crackers, and fried chicken.
>
>Although Seth is still swollen and has two black eyes, he looks great.
I
>am already getting used to his new look. It is emerging slowly
so we'll
>have time to adapt. It does not hurt him when I turn the screws
to advance
>his mid-face. I am so thankful for that. The trach is
another thing, I
>admire all of you out there that have had to deal with it. My,
my what a
>pain and worry. Seth is taking it in stride but hates the noise
that the
>air compressor makes. Last night he said that he felt as though
he was
>sleeping in a storm. It is noisy.
>
>My thoughts are will all of you, especially those of you preparing
for and
>having surgeries.
>
>Warmly, Dori
>
>Dori A. Jefferson
>djeff@midwest.net
>
>
=========================================================================
Date: Wed, 23 Sep 1998
22:20:29 -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: "Brent E. Young"
<beyoung@IX.NETCOM.COM>
Subject: Re: Seth is home:
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
Laurie Bailey wrote:
> It is wonderful that Seth is home and doing well.
>
> Laurie Bailey
> jkb@elpaso.net
>
> ----------
> > From: D. Jefferson <djeff@MIDWEST.NET>
> > To: APERT@LISTSERV.AOL.COM
> > Subject: Re: Seth is home:
> > Date: Wednesday, September 23, 1998 11:45 AM
> >
> > Dear Friends,
> >
> > It has been a long seven days, however, we are home and Seth is
> feeling
> > better. He still isn't eating. I hope it is possible
for someone
> to
> live
> > on Chocolate Carnation Instant Breakfast because he refuses
> everything
> > else. Maybe he'll feel more like eating once the pallet and
the
> mouth
> have
> > healed. He will have to be on a soft diet for at least eight weeks.
> This
> > is hard on a kid that loves raw vegetables, crackers, and fried
> chicken.
> >
> > Although Seth is still swollen and has two black eyes, he looks
> great. I
> > am already getting used to his new look. It is emerging slowly
so
> we'll
> > have time to adapt. It does not hurt him when I turn the
screws to
> advance
> > his mid-face. I am so thankful for that. The trach
is another
> thing, I
> > admire all of you out there that have had to deal with it.
My, my
> what a
> > pain and worry. Seth is taking it in stride but hates the
noise
> that the
> > air compressor makes. Last night he said that he felt as
though he
> was
> > sleeping in a storm. It is noisy.
> >
> > My thoughts are will all of you, especially those of you preparing
> for
> and
> > having surgeries.
> >
> > Warmly, Dori
> >
> > Dori A. Jefferson
> > djeff@midwest.net
Hi it's Kelly here,
I was so glad to hear everything went well with Seth's surgery.
When I had my surgeries, my mom made several trips to Taco Bell for
beans and rice. I had a lot of milkshakes and ice cream too. After
a
couple days I even ventured out to popsicles. I had a lot of pudding
and
jello. We went to Disneyland a week after my gingivectomy and we made
sure we were stocked with jello and pudding cups. You could make him
macaroni and cheese or top because thats pretty soft.
I hope you'll keep us posted on how he's doing. I'll be thinking about
him.
Bye,
Kelly
=========================================================================
Date: Thu, 24 Sep 1998
10:36:50 +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: jgibson2@EROLS.COM
Subject: Re: Update on EvaJessie
In-Reply-To: <199809240219.OAA03983@smtp1.ihug.co.nz>
MIME-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7BIT
> Meanwhile, back home her brother had also begun to scratch.
They've
> each had a treatment of the goop and they are scheduled for haircuts
tomorrow.
>
I hope this isn't too late. Haircuts
aren't a necessary part of
treatment for head lice! In fact, they're not particularly
helpful.
The kids doubtless got the little critters at school. It's a
major
problem in the elementary schools here and no reflection on
housekeeping or personal hygeine (believe it or not, they prefer
clean hair). My nephew got them while attending a prestigious
private high school. The best he could figure, someone with a
younger sibling brought them in and nearly the entire cast of a play
he was in got them.
Childen need to be taught
not to share hats, combs,
hairbrushes, etc even with their best friends. I'd also want
a look
at the classroom setup to see that the children store any hats,
jackets, sleep mats, etc totally separately -- no piling up, no
doubling on hooks.
Judy
Judy Gibson
jgibson2@erols.com
=========================================================================
Date: Thu, 24 Sep 1998
14:49:56 -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: ROBIN L HILL
<CARMENRAE@PRODIGY.NET>
Subject: Surgeries and such.....
MIME-Version: 1.0
Content-Type: text/plain; charset=ISO-8859-1
Content-Transfer-Encoding: 7bit
So glad to hear Seth is home and doing well. He sure is a trooper!!!!!
Sorry to hear about EvaJessie's ordeal. Hopefully that will be
resolved
soon. However, it turns out she will be having her surgery the
same day as
Carmen Rae. Carmen Rae is having her thumbs released tomorrow
(9/25)
morning. This surgery is kinda weird for us, we are excited about
her
getting fingers; however, still scared to death for another surgery.
Please keep her (and us) in your prayers. We were told only one
night in
the hospital, so if all goes well, should be home by Saturday.
Take care, hope everyone is doing fine and recovering from surgeries
nicely.
Robin Hill
P.S. The surgery tomorrow is also kinda weird because it comes
the day
after my 30th birthday. I am not sure which to be MORE upset
about!!!!!!!
=========================================================================
Date: Thu, 24 Sep 1998
16:23:49 EDT
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Yonstein@AOL.COM
Subject: Re: Surgeries and such.....
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
Glad to hear that Seth is home and recovering nicely. I guess
we are all in
agreement on chocolate.
Wow, that is an ordeal, Pat. Here is hoping there are no snafoos
this time
around for you and Eva Jessie.
Good luck to Carmen Rae on the thumb release, and Happy 30th Robin.
Hope everyone else is doing well.
Best wishes,
Janine
=========================================================================
Date: Thu, 24 Sep 1998
23:54:43 EDT
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: GSieb91515@AOL.COM
Subject: Re: cleft palate repair
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
Colleen,
I couldn't agree more. Making the decisions that will affect our
children's
lives forever is a constant battle for me. With so many varying
opinions
among doctors it is extremely hard to know what's the right thing to
do. I
have learned in our 22 month experience that you have to gather all
the
information, disect it and then go with your gut feeling. So
far, it has been
positive for us. However, without this group of exceptional caring
people I
don't know that I would have handled things as well to date.
I am honored to
be a part of this wonderful family. Best wishes to all.
Brenda
Houston
=========================================================================
Date: Thu, 24 Sep 1998
23:59:23 EDT
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: GSieb91515@AOL.COM
Subject: Re: Update on EvaJessie
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
Pat-
This is one for the books. You tell this experience with such
patience and
grace. What would we do without our humor? I sincerely
hope that this trip
proves more successful and that EvaJessie comes through with flying
colors.
We will be praying for all of you.
Brenda
Houston
=========================================================================
Date: Fri, 25 Sep 1998
02:08:52 EDT
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: BOp1912@AOL.COM
Subject: Re: cleft palate repair
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
Hello
I do not know how to write this but I will try
the best I can , I am 34
years old , and I also have Aperts Syndrome And I have a cleft palate
the is
still open they did not repair it when I was little , but I am
doing fine
with it I talk well but have alot of ear infections Please write
back if
anyone has any infro on it
Good luck to everone who had or is having
surgeries . And Chris good
luck to you .
Thank you Beth
My E-mail
address is BOp1912 @. com
=========================================================================
Date: Thu, 24 Sep 1998
16:54:38 -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: "D. Jefferson"
<djeff@MIDWEST.NET>
Subject: Re: Just for fun:
MIME-Version: 1.0
Content-Type: text/plain; charset=ISO-8859-1
Content-Transfer-Encoding: 7bit
The Deputy
The local sheriff was looking for a deputy, so Gomer - who was not
exactly the sharpest nail in the bucket went in to try out for the
job.
"Okay," the sheriff drawled, "Gomer, what is 1 and 1?"
"11" he replied.
The sheriff thought to himself, "That's not what I meant, but he's right."
"What two days of the weekstart with the letter 'T'?"
"Today and tomorrow."
He was again surprised that Gomer supplied a correct answer that
he had never thought of himself.
"Now Gomer, listen carefully: Who killed Abraham Lincoln?"
Gomer looked a little surprised himself, then thought really hard
for a minute and finally admitted, "I don't know."
"Well, why don't you go home and work on that one for a while?"
So, Gomer wandered over to the pool hall where his pals were waiting
to hear the results of the interview.
Gomer was exultant. "It went great! First day on the job and I'm
already working on a murder case!"
****************************************************************
Influencing The Jury
Murphy, a dishonest lawyer, bribed a man on his client's jury to hold
out
for
a charge of manslaughter, as opposed to the charge of murder which
was
brought by the state.
The jury was out for several days before they returned with the
manslaughter
verdict.
When Murphy paid the corrupt juror, he asked him if he had a very difficult
time convincing the other jurors to see things his way.
"Sure did," the juror replied, "the other eleven wanted to acquit."
****************************************************************
Job at the Zoo
This guy needs a job and decides to apply at the zoo. As it happened,
their
star attraction, a gorilla, had passed away the night before and they
had
carefully preserved his hide. They tell this guy that they'll
pay him well
if
he would dress up in the gorilla's skin and pretend to be the gorilla
so
people will keep coming to the zoo.
Well, the guy has his doubts, but Hey! He needs the money, so
he puts
on the skin and goes out into the cage. The people all cheer to see
him.
He
plays up to the audience and they just eat it up. This isnt so
bad, he
thinks, and he starts really putting on a show, jumping around, beating
his
chest and roaring, swinging around.
During one acrobatic attempt, though, he loses his balance and crashes
through some safety netting, landing square in the middle of the lion
cage!
As he lies there stunned, the lion roars. He's terrified and
starts
screaming, "Help, Help, Help!"
The lion races over to him, places his paws on his chest and hisses,
"Shut up or we'll BOTH lose our jobs!"
****************************************************************
A Loan
Before going to Europe on business, a man drove his
Rolls-Royce to a downtown New York City bank and went in to
ask for an immediate loan of $5,000.
The loan officer, taken aback, requested collateral and so
the man said, "Well then, here are the keys to my Rolls-Royce."
The loan officer promptly had the car driven into the bank's
underground parking for safe keeping, and gave him $5,000.
Two weeks later, the man walked through the bank's doors,
and asked to settle up his loan and get his car back. "That
will be $5,000 in principal, and $15.40 in interest", the
loan officer said. The man wrote out a check and started
to walk away.
"Wait sir", the loan officer said, "while you were gone, I
found out you are a millionaire. Why in the world would you
need to borrow $5,000?"
The man smiled. "Where else could I park my Rolls-Royce in
Manhattan for two weeks and pay only $15.40?
****************************************************************
Hillary's Question
During a recent publicity outing, Hillary sneaked off to visit a fortune
teller of some local repute. In a dark and hazy room, peering
into a
crystal ball, the mystic delivered grave news.
"There's no easy way to say this, so I'll just be blunt: Prepare yourself
to be a widow. Your husband will die a violent and horrible death
this
year."
Visibly shaken, Hillary stared at the woman's lined face, then at the
single flickering candle, then down at her hands. She took a
few deep
breaths to compose herself. She simply had to know. She
met the fortune
teller's gaze, steadied her voice, and asked her question.
"Will I be acquitted?"
****************************************************************
Pointless Ponderings . . .
A bus station is where a bus stops. A train station is where a train
stops.
On my desk I have a work station
Can atheists get insurance for acts of God?
If Fed Ex and UPS were to merge, would they call it Fed UP?
Does fuzzy logic tickle?
If they arrested the Energizer bunny, would they charge it with battery?
I believe five out of four people have trouble with fractions.
How come you never hear about gruntled employees?
How much faith does it take to be an atheist?
I dont have a solution, but I admire your problem.
If a tin whistle is made of tin (and it is), then what, exactly, is
a fog
horn made out of?
If quitters never win and winners never quit, what fool came up with
Quit
while youre ahead?
If atheists say there is no God, who do they think pops up the next
Kleenex
in the box?
Do Lipton employees take coffee breaks?
What hair color do they put on the drivers licenses of bald men?
What WAS the best thing before sliced bread?
How do I set my laser printer on stun?
How is it possible to have a civil war?
If all the world is a stage, where is the audience sitting?
If love is blind, why is lingerie so popular?
If one synchronized swimmer drowns, do the rest have to drown too?
If the #2 pencil is the most popular, why is it still #2?
If work is so terrific, why do they have to pay you to do it?
If youre born again, do you have two belly buttons?
If you ate pasta and antipasta, would you still be hungry?
If you try to fail, and you succeed, which have you done?
Why is it called tourist season if we cant shoot at them?
Why is the alphabet in that order? Is it because of that song?
What happens when none of your bees wax?
If the black box flight recorder is never damaged during a plane crash,
why
isnt the whole plane made of that stuff?
Why is there an expiration date on sour cream?
If most car accidents occur within five miles of home, why doesnt everyone
just move 10 miles away?
Atheism is a non-prophet organization.
If man evolved from monkeys and apes, why do we still have monkeys
and
apes?
If all those psychics know the winning lottery numbers, why are they
all
still working?
Could it be that all those trick-or-treaters wearing sheets arent going
as
ghosts but as mattresses?
If a mute swears, does his mother wash his hands with soap?
And whose cruel idea was it for the word Lisp to have an S in it?
Where are we going? And whats with this hand-basket?
****************************************************************
Corny . . . .
An elephant is drinking out of a river when he spots a turtle asleep
on a log. The elephant ambles over and kicks the unsuspecting
turtle
clear across the river.
"Why did you do that?" asks a passing giraffe.
"Because I recognized it as the same turtle that took a nip out of my
trunk 47 years ago."
"Wow, what a memory!" says the giraffe.
"Yes," says the elephant. "Turtle recall."
****************************************************************
The tech support problem dates back to long before the industrial
revolution, when primitive tribesmen beat out a rhythm on drums to
communicate:
This fire help. Me Groog
Me Lorto. Help. Fire not work.
You have flint and stone?
Ugh
You hit them together?
Ugh
What happen?
Fire not work
(sigh) Make spark?
No spark, no fire, me confused. Fire work yesterday.
*sigh* You change rock?
I change nothing
You sure?
Me make one change. Stone hot so me soak in stream so stone not burn
Lorto
hand. Small change, shouldn't keep Lorto from make fire.
*Grabs club and goes to Lorto's cave*
****************************************************************
More Corn . . .
A large green frog hops into a bank, jumps up on the counter and says
to
the teller, "I want a loan."
The teller says, "You'll have to see the loan officer. Her office
is down
the hall and the name on the door says "Patricia Wack."
So the frog hops off the counter, down the hall and to Mrs. Wack's office.
He jumps up on her desk and says, "I want a loan." Mrs. Wack,
quite
puzzled, gives the standard line, "We must have something to secure
the
loan, some collateral."
At that the frog pulls out a ceramic lion, places it on her desk and
repeats that he wants a loan.
So Patricia picks up the ceramic lion, goes in to the bank president's
office, places the ceramic lion on his desk, and tells him,
"I have this frog in my office who says he wants a loan, and this is
what he has to secure it. I don't even know what this thing is."
The bank president looks at the ceramic lion, looks at Mrs. Wack,
looks back at the ceramic lion and finally says,
"It's a knick-knack, Patty Wack. Give the frog a loan."
****************************************************************
Getting Pulled Over
A police officer pulled over a red Corvette after it had run a stop
sign. "May I see your driver's license and registration please?"
"What's the problem, officer?"
"Your just ran the stop sign back there at the last intersection."
"Oh, come on pal, there wasn't a car within miles of me".
"Nevertheless sir, you are required to come to a complete stop,
look both ways, and proceed with caution."
"You gotta be kidding me!"
"It's no joke, sir".
"Look, I slowed down almost to a complete stop, saw no one within
twenty miles, and proceeded with caution."
"That's beside the point, sir. You are supposed to come to a
complete stop, and you didn't. Now if I may see your license and"
"You've sure got a lot of time on your hands. What's the matter,
all the doughnut shops closed?"
"Sir, I'll overlook that last comment. Let me see your license
and registration immediately!"
"I will, if you can tell me the difference between slowing down,
and coming to a complete stop."
" Sir, I can do better than that." He opened the car door, dragged
the obnoxious motorist out, and proceeded to methodically beat
him over the head with his nightstick."
"Now sir, would you like me to slow down or come to a complete
stop?"
****************************************************************
A cattleman from Texas died & went on to the great
beyond. As he approached the great gate, he noticed that
the terrain was bare with no greenery. He remarked to the
gate keeper, "Howdy Saint Peter. Say, this looks just like
Texas."
"The gatekeeper replied, "First of all, I'm not Saint Peter and
second, you really don't know where you are at all, do you ?"
Dori A. Jefferson
djeff@midwest.net
=========================================================================
Date: Fri, 25 Sep 1998
20:34:22 EDT
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: GSieb91515@AOL.COM
Subject: Re: Surgeries and such.....
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
Robin-
Just a note to wish you well with Carmen Rae's thumb surgery.
We pray that
she comes home quickly. Happy 30th Birthday to you! Jonathan's
next hand
surgery may be on my birthday also (only I wish I was turning 30 again.)
Best
wishes.
Brenda
Houston
=========================================================================
Date: Fri, 25 Sep 1998
21:16:17 -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: jamerman@UTI.COM
Subject: sleep study
MIME-Version: 1.0
Content-Type: text/plain; charset=ISO-8859-1
Content-Transfer-Encoding: 7bit
Just a note to let you know that Nick is having a sleep study done this
Sunday night.
I took him to an Ent dr. last month and we discovered that is adenoids
are
larger than they should be. The sleep study should decide if
this is
obstructing his sleep. I am feeling pretty confident that the
study will
be ok.
When Nick was younger he use to snore so loud I was expecting the windows
to rattle but in the last year the snoring has just about completey
ceased.
But since the adenoids are a possible problem, we will have this
study
done as a precaution.
If there is a problem, I don't know what we will do, since his Plastic
surgeon, orthodonist and the hopital speech therapist are all totally
against adenoid removal.
Keep your fingers crossed for us that all is ok.
And Dori, I just loved your jokes.
Beth, are you still out there?
Judy
=========================================================================
Date: Fri, 25 Sep 1998
22:44:37 EDT
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Frank & Annette
Contrino <contrino@BUFFNET.NET>
Subject: Re: sleep study
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
>Just a note to let you know that Nick is having a sleep study done
this
>Sunday night.
>
After Nicole had her sleep study, I came to the conclusion that these
are
really not studies of the child's ability to sleep. They're actually
a
study of the ability of the adult who stays with the child to sleep
in some
lousy, uncomfortable chair while they lie there and wonder what the
outcome
of the child's sleep study will be. It's just another one of
those cruel
jokes medical professionals play on us adults. Like making you
wait three
hours to see them for 5 minutes. That's to gauge your tolerance
to
suffering. :-)
=========================================================================
Date: Sat, 26 Sep 1998
00:17:46 -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: Robyn Johnston
<robyn@ORDATA.COM>
Subject: Re: sleep study
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Judy, our Dr's wanted to wait a while too before they removed Brenna's
adenoids and tonsils, but it has made a huge difference in her sleep.
She
no longer has terrible apnea. Just some very mild ones.
She still snores
but it is a lot better.
Good luck with the study
Robyn J
At 09:16 PM 9/25/98 -0500, you wrote:
>Just a note to let you know that Nick is having a sleep study done
this
>Sunday night.
>
>I took him to an Ent dr. last month and we discovered that is adenoids
are
>larger than they should be. The sleep study should decide if
this is
>obstructing his sleep. I am feeling pretty confident that the
study will
>be ok.
>When Nick was younger he use to snore so loud I was expecting the
windows
>to rattle but in the last year the snoring has just about completey
ceased.
> But since the adenoids are a possible problem, we will have this
study
>done as a precaution.
>If there is a problem, I don't know what we will do, since his Plastic
>surgeon, orthodonist and the hopital speech therapist are all totally
>against adenoid removal.
>
>Keep your fingers crossed for us that all is ok.
>
>And Dori, I just loved your jokes.
>
>Beth, are you still out there?
>
>Judy
>
>
=========================================================================
Date: Sat, 26 Sep 1998
15:38:59 EDT
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: ETolson643@AOL.COM
Subject: Re: sleep study
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
Tim had his adenoids and tonsils out about 6 months before his midface
advancement. This definitely helped with the snoring. It
was totally
recommended by the plastics people, ortho and speech people.
Beth in Boston
=========================================================================
Date: Sat, 26 Sep 1998
14:59:45 -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: jamerman@UTI.COM
Subject: Re: sleep study
MIME-Version: 1.0
Content-Type: text/plain; charset=ISO-8859-1
Content-Transfer-Encoding: 7bit
Beth,
Did the removal of Tim's adenoids affect his speech at all?
The speech is the concern by Nick's doctors.
How old was Tim when he had his surgery?
Judy
----------
> From: ETolson643@AOL.COM
> To: APERT@LISTSERV.AOL.COM
> Subject: Re: sleep study
> Date: Saturday, September 26, 1998 2:38 PM
>
> Tim had his adenoids and tonsils out about 6 months before his midface
> advancement. This definitely helped with the snoring.
It was totally
> recommended by the plastics people, ortho and speech people.
>
> Beth in Boston
=========================================================================
Date: Sat, 26 Sep 1998
20:24:49 -0400
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: ROBIN L HILL
<CARMENRAE@PRODIGY.NET>
Subject: Carmen Rae
MIME-Version: 1.0
Content-Type: text/plain; charset=ISO-8859-1
Content-Transfer-Encoding: 7bit
Hello Everyone! Just wanted to let you know Carmen Rae is home
from the
hospital. Surgery went well and she was released this morning.
Arrived
home around
1:00 p.m. and four hours later we were rushing back to the hospital
to have
NEW splints put on!!!!!!!! She lasted about 30 hours with the
first set.
How many sets will it take to get through 10 days????????? GEEEEEEEEEEE!
We can tell the hand surgeries are going to be our favorite!!!!!!!!!
Anyway, we're back home with splint set
# 2 and doing fine for now! Hope everyone is doing well.
Please keep
Carmen Rae in your thoughts and prayers (maybe say an extra prayer
for the
splints to stay on).
Take care
The Hills in Newnan, GA
=========================================================================
Date: Sat, 26 Sep 1998
21:31:54 -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: Jack and Raquel
<jara1@BELLSOUTH.NET>
Subject: Greetings
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
Hi all....
Just checking in with everyone......Sorry we haven't been around lately
just lurking.....We have been pretty busy...This week was extra busy
due
to the stormy Georges deciding to make our lives just a little bit
more
complicated. We were ready for him but thank goodness at the
last
minute he decided not to show up. He did mess up our Keys but
hopefully
they'll get back to normal soon. So far no Hurricane has topped
off
Andrew (thank goodness for that)..
Anyway, we are now preparing for Nicole's 1st birthday party.
I can't
believe how quickly time has flown. Today we took her to Sears
to get
her portraits taken, she did wonderfully smiled in every pose. She's
a
cutie.....Next Saturday the 3rd is her first birthday and it's great
that her birthday falls on a Saturday, because for us Saturday's are
the
best days for parties.
Well in another five weeks Nicki is scheduled for her first hand surgery
November 5th to be exact, we'll see how that goes. We are looking
forward to start to see her little fingers released......Well, talk
to
you all soon....I will now conclude my digest as my husband just called
it....
Raquel Miller in windy south Florida.....
=========================================================================
Date: Sun, 27 Sep 1998
10:47:58 EDT
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Nodrmat26@AOL.COM
Subject: Re: Carmen Rae
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
It's good to hear that Carmen Rae's surgery went well and that ya'll
are home.
This is Zoey's Mom, Christina here and was just wondering. I
keep hearing
about these splints and have to wonder why Zoey ALWAYS gets cast-iron
(exagerating) casts put on. Her surgeons tell me that her fingers
can't be
moved one iota and that if she had anything but casts, there would
be a
possibilty they'd be moved and her skin grafts wouldn't heal correctly.
I'm
wondering if it has anything to do with the degree of difficulty on
Zoey's
hands. I'm really not sure of what "type" Zoey's had are, but
I know that she
is going to end up with two 4-fingered hands. Anyone have any
idea's?
Christina
Sunny San Antonio
=========================================================================
Date: Sun, 27 Sep 1998
10:53:55 EDT
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Nodrmat26@AOL.COM
Subject: Zoey is Hospital
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
Just wanted to let everyone know that little Zoey was admitted Friday
(the
25th) afternoon for respiratory distress. It's crazy that she's
still in
there still on Sunday, being that the Dr's weren't sure if they should
have
admitted here at all. She's definately been much sicker.
They discourage the
parent(s) to stay in this hospital, so I had to leave her overnight
and when I
leave her, she seems to be doing really well and the Drs told me Friday
and
Saturday night that she should go home the following morning.
It's Sunday and
it looks like she's not going home today either. It's so frustrating.
They
don't even provide comfortable chairs and it's hard to get Zoey comfortable
because she's all dolled up in wires and stuff. I'm praying that
Zoey clears
up and goes home soon, because being sick myself I can't take another
day of
this hospital.
Christina
(I don't know if it's sunny San Antone, because I'm stuck in this hospital
room without a view!)
=========================================================================
Date: Sun, 27 Sep 1998
13:21:18 -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: Jack and Raquel
<jara1@BELLSOUTH.NET>
Subject: Zoey in hospital
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
Christina,
Sorry to hear that your little Zoey is in the hospital....Hang in there
I'm sure she'll be out sooner than you think. It's incredible what
some
of our kids have to endure but I can say all this does is make us even
stronger. We must have lots of faith the God will help us through
it
all....Hang in there...
Raquel Miller.....
=========================================================================
Date: Sun, 27 Sep 1998
12:20:33 -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: ROBIN L HILL
<CARMENRAE@PRODIGY.NET>
Subject: Re: Carmen Rae
MIME-Version: 1.0
Content-Type: text/plain; charset=ISO-8859-1
Content-Transfer-Encoding: 7bit
Carmen Rae had splints (half plaster wrapped with ace bandage) right
after
surgery. However, when we had to have them re-done the next day
they put
something more like a regular cast. It is fiberglass and goes
completely
around her arm (you know, it is hard all the way around). So,
it sounds
like Zoey had something similar to this. Did she keep hers on???????
Carmen Rae already has one of her #2 splints, casts, whatever (clubs
is
what we call them) slipping off!!!!!! I am sure we will be at
the doctor's
office tomorrow having it redressed. Have I mentioned how much
fun we
think this is???????????????
Robin Hill (Newnan, GA) trying desperately to keep HARD THINGS
on my
daughter's arms!!!!!!
----------
> From: Nodrmat26@AOL.COM
> To: APERT@LISTSERV.AOL.COM
> Subject: Re: Carmen Rae
> Date: Sunday, September 27, 1998 10:47 AM
>
> It's good to hear that Carmen Rae's surgery went well and that ya'll
are
home.
> This is Zoey's Mom, Christina here and was just wondering.
I keep
hearing
> about these splints and have to wonder why Zoey ALWAYS gets cast-iron
> (exagerating) casts put on. Her surgeons tell me that her fingers
can't
be
> moved one iota and that if she had anything but casts, there would
be a
> possibilty they'd be moved and her skin grafts wouldn't heal correctly.
I'm
> wondering if it has anything to do with the degree of difficulty
on
Zoey's
> hands. I'm really not sure of what "type" Zoey's had are, but
I know
that she
> is going to end up with two 4-fingered hands. Anyone have any
idea's?
> Christina
> Sunny San Antonio
=========================================================================
Date: Sun, 27 Sep 1998
12:22:38 -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: ROBIN L HILL
<CARMENRAE@PRODIGY.NET>
Subject: Re: Zoey is Hospital
MIME-Version: 1.0
Content-Type: text/plain; charset=ISO-8859-1
Content-Transfer-Encoding: 7bit
Sounds like we're not the only ones having troubles this week.
We will
keep you and Zoey in our prayers. I am learning the phrase, "THIS
TOO
SHALL PASS!" Hang in there.
Robin Hill
----------
> From: Nodrmat26@AOL.COM
> To: APERT@LISTSERV.AOL.COM
> Subject: Zoey is Hospital
> Date: Sunday, September 27, 1998 10:53 AM
>
> Just wanted to let everyone know that little Zoey was admitted Friday
(the
> 25th) afternoon for respiratory distress. It's crazy that she's
still in
> there still on Sunday, being that the Dr's weren't sure if they should
have
> admitted here at all. She's definately been much sicker.
They
discourage the
> parent(s) to stay in this hospital, so I had to leave her overnight
and
when I
> leave her, she seems to be doing really well and the Drs told me
Friday
and
> Saturday night that she should go home the following morning.
It's
Sunday and
> it looks like she's not going home today either. It's so frustrating.
They
> don't even provide comfortable chairs and it's hard to get Zoey
comfortable
> because she's all dolled up in wires and stuff. I'm praying
that Zoey
clears
> up and goes home soon, because being sick myself I can't take another
day
of
> this hospital.
> Christina
> (I don't know if it's sunny San Antone, because I'm stuck in this
hospital
> room without a view!)
=========================================================================
Date: Sun, 27 Sep 1998
21:25:03 EDT
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: ETolson643@AOL.COM
Subject: Re: sleep study
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
Tim was 14 when he had his midface advancement. The removal of
the adenoids
and tonsils didn't affect his speech either way.
Beth in Boston
=========================================================================
Date: Sun, 27 Sep 1998
19:22:50 -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: Scott Pengelly
<scottp@EUGENE.COM>
Subject: good wishes, Zoey: Scott
Comments: To: AOL User <MHTeach102@AOL.COM>
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Christina:
Thank you for letting us know
about your battle and Zoey's
battle. How frightening it
must have been to not be with
Zoey through the night when
all was so uncertain. Hope
Zoey is doing better.
And how are you?
All the best. You are in
my thoughts and prayers.
Scott
=========================================================================
Date: Sun, 27 Sep 1998
22:34:14 EDT
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: NephiRose@AOL.COM
Subject: Re: Carmen Rae
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
In a message dated 98-09-27 15:17:47 EDT, you write:
<< Did she keep hers on???????
Carmen Rae already has one of her #2 splints, casts, whatever
(clubs is
what we call them) slipping off!!!!!! >>
Dr. Garramone at Primary Children's Hospital (Utah) put a cast on my
girl,
Sarah V.
also. To keep it from slipping off he set the cast almost clear
up to her
armpit with her arm bent. Her arm remained bent for four weeks.
No trouble
with the cast slipping off.
Belinda Vicars
=========================================================================
Date: Sun, 27 Sep 1998
23:18:27 +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: jgibson2@EROLS.COM
Subject: Re: Carmen Rae
In-Reply-To: <cd3b4bad.360e501e@aol.com>
MIME-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7BIT
> This is Zoey's Mom, Christina here and was just wondering. I
keep hearing
> about these splints and have to wonder why Zoey ALWAYS gets cast-iron
> (exagerating) casts put on. Her surgeons tell me that her fingers
can't be
> moved one iota and that if she had anything but casts, there would
be a
> possibilty they'd be moved and her skin grafts wouldn't heal correctly.
It may be a difference in Zoey's hands -- or a difference
in the
doctors' training and experience. I've observed quite a difference
in technique and philosophy between our 3 neonatologists who've been
practicing together for over 10 years. I can only imagine the
differences with docs in different hospitals and different parts of
the country.
Often 2 ways of accomplishing a thing are nearly
equal in
outcome. One physician will chose the better odds, the other will go
for comfort or ease of care if the differences aren't huge. As
long
as you're getting good results, it's only a matter of weeks dealing
with the cast (easy for me to say, it's not my cast)
Judy G
Judy Gibson
jgibson2@erols.com
=========================================================================
Date: Sun, 27 Sep 1998
23:18:27 +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: jgibson2@EROLS.COM
Subject: Re: Zoey is Hospital
In-Reply-To: <d33c522d.360e5183@aol.com>
MIME-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7BIT
> They discourage the
> parent(s) to stay in this hospital, so I had to leave her overnight
and when I
> leave her, she seems to be doing really well and the Drs told me
Friday and
> Saturday night that she should go home the following morning.
It's Sunday and
> it looks like she's not going home today either. It's so frustrating.
They
> don't even provide comfortable chairs and it's hard to get Zoey comfortable
> because she's all dolled up in wires and stuff.
This sounds like one of those situations where my
husband would
pack his sleeping bag and camping mattress. I think it's awful
that
they don't encourage parents to stay. We don't have room for
them to
spend nights in our NICU, but the PICU and pediatrics floors here
bring in recliner chairs and even order meal trays for parents. I
hope Zoey will be home soon!
Judy G.
Judy Gibson
jgibson2@erols.com
=========================================================================
Date: Mon, 28 Sep 1998
02:35:12 -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: tonsil and adnoids
MIME-version: 1.0
Content-type: text/plain; charset="us-ascii"
I remember hearing
along the way that when doctors don't want
removal of tonsils and adnoids it is because they had a cleft palate.
They
told us that if they had a cleft palate then later the removal would
cause
speech differences. Daryl may have to have his removed and our
ENT and
Craniofacial said it would not affect him because he didn't have a
cleft
palate at birth. That is all I know, whether this is helpful
info or not,
I don't know. Good Luck!!
Denise Graham
=========================================================================
Date: Mon, 28 Sep 1998
07:47:10 EDT
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Nodrmat26@AOL.COM
Subject: Re: Carmen Rae
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
In a message dated 9/27/98 2:17:47 PM Central Daylight Time,
CARMENRAE@PRODIGY.NET writes:
<< It is fiberglass and goes completely
around her arm (you know, it is hard all the way around).
So, it sounds
like Zoey had something similar to this. Did she keep hers
on??????? >>
That sounds exactly like what Zoey had. They put Zoey's cast on
clear up to
her shoulder and when I asked why, they said because if they didn't
put her
cast that high that it would come off before they were able to eat
dinner that
night. :o) Zoey didn't have much choice than
to keep hers one, not even my
skinny little Zoey could wriggle out of this cast. Thanks for
the reply!
Christina
=========================================================================
Date: Mon, 28 Sep 1998
07:52:19 EDT
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Nodrmat26@AOL.COM
Subject: Re: good wishes, Zoey: Scott
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
Scott~
Thanks for writing. It's alot easier to leave Zoey during the
night when I
know and like her nurse. They've got a pretty good staff at this
hospital and
most already know little Zoey. It still would be nice if I could
stay with
her in a comfortable bed of my own though, or atleast a semi-comfortable
chair.
She wasn't well when I got there yesterday. She was sleeping at
first, then
when she woke up, she was breathing so bad, you could hear her from
accross
the hospital. She threw such a tantrum that they had to sedate
her to calm
her down. It was pretty aweful, being that her own mother could
not bring her
comfort. I understood, though. I'm on my way to the hospital
now, I'll
update everyone when I return this evening.
Thanks,
Christina
=========================================================================
Date: Mon, 28 Sep 1998
08:16:04 EDT
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Jenngram@AOL.COM
Subject: Re: Carmen Rae
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
Jordan has those bad hands as well...rosebuds when we first stared.
He has
alwasy had splints, and we are less diligant about making him wear
them than
we should be. This last time he kept them on for a week. We went in
to see the
doctor and the grafts healed wonderfully...the best yet, and he hasn't
been
splinted again...just wraped. Last night I took off the bandages to
start
debriding and such and he is almost healed totally. And he crawled,
walked,
fell...all the normal stuff on it.
I think its just a surgeons preference. We love splints b/c they are
removable, and even though his doctor would probablly fuss at me for
doing
it...it gives us the chance to determine how much he needs it. After
several
surgeries we were better at it. No harm seems to have been done though
by our
own regimin....and everyone is happier!
Jenn(Tampa/St. Pete)
=========================================================================
Date: Mon, 28 Sep 1998
15:28:26 -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: Ryan Bradley
<Bradleys_r@COMPUSERVE.COM>
Subject: Carmen Rae
MIME-Version: 1.0
Content-Type: text/plain; charset=ISO-8859-1
Content-Transfer-Encoding: 8bit
Hi there;
Glad to hear Carmen Rae is home, we will pray for the splints to stay on.
The Bradley's
=========================================================================
Date: Mon, 28 Sep 1998
15:28:25 -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: Ryan Bradley
<Bradleys_r@COMPUSERVE.COM>
Subject: Re: good wishes, Zoey: Scott
MIME-Version: 1.0
Content-Type: text/plain; charset=ISO-8859-1
Content-Transfer-Encoding: 8bit
Christina:
We hope Zoey is doing better today, we will keep her in our prayers
so she
can come home soon..
The Bradley's
=========================================================================
Date: Wed, 29 Jul 1998
15:39:27 -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: Andrea Gartner
<agartner@PEGANET.NET>
Subject: Re: Seth is home:
MIME-Version: 1.0
Content-Type: text/plain; charset=ISO-8859-1
Content-Transfer-Encoding: 7bit
Hi Dori,
I'm glad to hear Seth is home and doing sure. I'm sure its possible
for
someone to live on chocolate carnation breakfast. When I was
in Illinois,
I used to love eating Farina.
I hope he has a speedy recovery.
-Andrea
=========================================================================
Date: Mon, 28 Sep 1998
16:32:05 -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: "D. Jefferson"
<djeff@MIDWEST.NET>
Subject: Re: Seth update
MIME-Version: 1.0
Content-Type: text/plain; charset=ISO-8859-1
Content-Transfer-Encoding: 7bit
Dear Friends,
Things are moving right along. We went to St. Louis today for
a follow up
with our cranial surgeon and ENT. We had great news.
Seth's mid-face is
almost complete. Just a few more days or should I say turns of
the screw
and it will be done. We have to give his right side an extra
turn each day
to line up his bite. His ENT told us to plug the trach and watch
him
sleep. If it looks good to call and get an appointment to have
it removed.
All in all we are very pleased with the results. Seth is still
swollen so
we don't really know how he will eventually look, that will take a
few
months. I am having a hard time adjusting to his eyes.
I always loved his
overly large prominent eyes. Now his eyes look more like everyone
else's.
Due to the swelling he is unable to make very many facial expressions.
He
was always so expressive in the past. I am sure that will get
better as
his face heals, the swelling goes down and he feels better. He
still feels
pretty rough. He has been through a lot.
By the way for those who asked about the trach: It is not the
customary
procedure. Each child is different and has different needs.
Seth needed a
trach and after seeing the swelling and remembering how difficult it
has
been for him to breath in the past, I have to agree that it was needed.
His ENT had already suggested a trach before we had decided on the
surgery.
It was the need for the trach that forced us to go ahead with
the surgery.
We would not have done it at this age otherwise. In our
minds we had
planned to do it when Seth was older and could help with the decision.
My
husband had an auto accident several years ago that changed his face
so he
had very strong feeling about including Seth in the decision to alter
his
looks.
I am sorry to hear that Zoey is doing poorly. I hope that she
is home soon
and resting comfortably in your arms, Christina.
I look forward to hearing an update from Pat about EvaJessie.
She has been
on my mind and in my prayers.
Seth had a very hard time keeping a splint on. He did better with
casts
bent at the elbow. They didn't slip off as easily. I can
still remember
how panicked I felt at the time.
Peace, Dori
Dori A. Jefferson
djeff@midwest.net
=========================================================================
Date: Mon, 28 Sep 1998
18:58:55 EDT
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Nodrmat26@AOL.COM
Subject: Zoey update
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
Zoey's Mom here. I'm glad to hear Seth is almost finished with
the mid-face
thing. I've also worried about how Zoey's going to look afterwards
because
she is just so beautiful as she is. I guess I have to remember
that she's not
going to be having surgery for my sake, it's for hers and she's beautiful
no
matter how the surgery will change her cute little face. It's
the same spirit
underneath. I'm also glad that Seth with be done with his trach
soon. I
don't know how it feels personally, but Zoey does and is she could
tell me all
about it, I'm sure her trach wouldn't get rave reviews on being comfortable.
Zoey is doing a little better today. They're allowing her to drink
some apple
juice and that has made her a little happier. Being the optimist
that I am
(yeah, right!), I'm hoping she's home by Wednesday. She's still
working
pretty hard to breath, but she must be feeling better, I got her to
smile and
laugh today.
Thanks everyone for caring. Talk to you later.
Christina
San Antonio
=========================================================================
Date: Tue, 29 Sep 1998
19:17:34 -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: Alice Lynch <goddess@CAPITAL.NET>
Subject: Re: Seth update
MIME-Version: 1.0
Content-Type: text/plain; charset=ISO-8859-1
Content-Transfer-Encoding: 7bit
Dear Dori:
Was Seth's Doctor, Dr. Marsh? If yes, is he doing the turn of
the screw
kind of mid-face? The last time Jack and I talked to him, it
was still to
experimental. He wanted to wait to see. When Colin's time
comes for his
mid-face I'd love to be able to have that option.
Thanks for time and response.
Alice in Lake George. Colin's mom.
----------
> From: D. Jefferson <djeff@MIDWEST.NET>
> To: APERT@LISTSERV.AOL.COM
> Subject: Re: Seth update
> Date: Monday, September 28, 1998 5:32 PM
>
> Dear Friends,
>
> Things are moving right along. We went to St. Louis today for
a follow
up
> with our cranial surgeon and ENT. We had great news.
Seth's mid-face
is
> almost complete. Just a few more days or should I say turns
of the screw
> and it will be done. We have to give his right side an extra
turn each
day
> to line up his bite. His ENT told us to plug the trach and
watch him
> sleep. If it looks good to call and get an appointment to have
it
removed.
>
>
> All in all we are very pleased with the results. Seth is still
swollen
so
> we don't really know how he will eventually look, that will take
a few
> months. I am having a hard time adjusting to his eyes.
I always loved
his
> overly large prominent eyes. Now his eyes look more like everyone
else's.
> Due to the swelling he is unable to make very many facial expressions.
He
> was always so expressive in the past. I am sure that will get
better as
> his face heals, the swelling goes down and he feels better.
He still
feels
> pretty rough. He has been through a lot.
>
> By the way for those who asked about the trach: It is not the
customary
> procedure. Each child is different and has different needs.
Seth needed
a
> trach and after seeing the swelling and remembering how difficult
it has
> been for him to breath in the past, I have to agree that it was needed.
> His ENT had already suggested a trach before we had decided on the
surgery.
> It was the need for the trach that forced us to go ahead with
the
surgery.
> We would not have done it at this age otherwise. In our
minds we had
> planned to do it when Seth was older and could help with the decision.
My
> husband had an auto accident several years ago that changed his face
so
he
> had very strong feeling about including Seth in the decision to alter
his
> looks.
>
> I am sorry to hear that Zoey is doing poorly. I hope that she
is home
soon
> and resting comfortably in your arms, Christina.
>
> I look forward to hearing an update from Pat about EvaJessie.
She has
been
> on my mind and in my prayers.
>
> Seth had a very hard time keeping a splint on. He did better
with casts
> bent at the elbow. They didn't slip off as easily. I
can still remember
> how panicked I felt at the time.
>
> Peace, Dori
>
> Dori A. Jefferson
> djeff@midwest.net
=========================================================================
Date: Mon, 28 Sep 1998
20:38:40 -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: foster <foster@ICONTECH.COM>
Subject: Zoey in hospital
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Christina,
Sorry to hear that Zoey is sick. We will be keeping her in our thoughts
and
prayers.
Happy to see that Carmen Rae and Seth are home and doing well.
Also happy birthday to Nicole and I hope Saturday is a great day for
your party.
Everyone here is well and the days are zipping by. I can hardley believe
that Billy will be having his next hand surgery next week.
He finally put two words together this weekend. It was 80 degrees on
Saturday and a whole bunch of kids were over jumping on the trampoline
and
Billy was in his swing . Our dog Casey was barking up a storm because
the
kids were yelling and she just felt left out I guess, so every so often
one
of the kids would yell at her to shut up. Well out of no where Billy
yelled
sut up. We were totally shocked. It was so funny and he kept saying
it over
and over and giving Casey the worst look. Although shut up or sut up
as
Billy would say is not exactly what we would like him to say it sounded
wonderful to us. After all he only can say a total of 6 words and can
sign
about 4. So to us this was heaven. Isn't it funny that such a small
thing
could bring us so much joy.
Hope everyone else is well and as always you are all in our prayers
and in
our hearts.
Karen(PA)
=========================================================================
Date: Mon, 28 Sep 1998
18:12:50 -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: ROBIN L HILL
<CARMENRAE@PRODIGY.NET>
Subject: Re: Carmen Rae
MIME-Version: 1.0
Content-Type: text/plain; charset=ISO-8859-1
Content-Transfer-Encoding: 7bit
We must have a Houdini here!!!!!! Carmen Rae's cast sounds identical
to
Sarah's, but somehow she is still escaping! In fact, we are now
on round
3!!!!!! Spent the morning getting her right arm put in yet ANOTHER
cast!
Robin Hill (my child must be REALLY talented)
----------
> From: NephiRose@AOL.COM
> To: APERT@LISTSERV.AOL.COM
> Subject: Re: Carmen Rae
> Date: Sunday, September 27, 1998 10:34 PM
>
> In a message dated 98-09-27 15:17:47 EDT, you write:
>
> << Did she keep hers on???????
> Carmen Rae already has one of her #2 splints, casts, whatever
(clubs is
> what we call them) slipping off!!!!!! >>
>
>
> Dr. Garramone at Primary Children's Hospital (Utah) put a cast on
my
girl,
> Sarah V.
> also. To keep it from slipping off he set the cast almost clear
up to
her
> armpit with her arm bent. Her arm remained bent for four weeks.
No
trouble
> with the cast slipping off.
>
> Belinda Vicars