>Mar had two sets of surgeries on her hands,  and in fact,  the surgeons
>worked on both hands and one foot each time.  Had to have one foot free
>so that they had at least one limb for  good IV access!

Amy still had both feet in plaster when they did the first operation on her hands and she came out of theatre with bilateral abdominal flaps.  The IV went into her neck and she still bares the scar.

Ann
NZ
=========================================================================
Date:         Sun, 29 Nov 1998 08:24:34 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:         Jenngram@AOL.COM
Subject:      Re: hand surgery
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Jordna had his pinkies and thumbs released at the same time, but all of the
remaining fingers have been one at a time...for blood flow reasons....the
pinky and thumb are so far apart that they didn't share any common vesels, so
they couuld be done together.....BUT...by having only 1 at a time done, the
healing process seems to be much quicker. It seemed to take FOREVER for the
huge grafts on the web space between thumb and index finger, and pinky and
middle finger to heal.....so perhps there is a silver lining

Jenn(Tampa/St. Pete....being ignored by Old Man Winter down here!!!!)
=========================================================================
Date:         Sun, 29 Nov 1998 20:30:39 -0000
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Steve Stewart <steve@FSTEWART16.FREESERVE.CO.UK>
Subject:      Re: APERT Digest - 25 Nov 1998 to 26 Nov 1998 (#1998-109)
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Hello Jeanne. We live south of London on the Kent border.  We have seen alot
of improvement with Ryans speech but its slow.  I went on a Hannen speech
course to encourage his lanuage abilty a few years ago.  I believe this was
an American approach to language difficulties and it certainly made me think
about how I was talking to Ryan and it helped tremendously.
We visited Boston once prior to the children entering our lives and had a
wonderful time although I did gain a few pounds.
Nice to hear from you

-----Original Message-----
From: TFinch10@AOL.COM <TFinch10@AOL.COM>
To: APERT@LISTSERV.AOL.COM <APERT@LISTSERV.AOL.COM>
Date: 27 November 1998 13:46
Subject: Re: APERT Digest - 25 Nov 1998 to 26 Nov 1998 (#1998-109)
 

>Hi Karen and Steve,
>Where do you live? Speech services vary in the states, and certainly
outside
>the US. Our son Nate is 8 years old. His articulation improves yearly.
>(Although he just got set back with a palate widener device) but he has had
to
>WORK...Best, Jeanne in Boston
>
=========================================================================
Date:         Sun, 29 Nov 1998 13:13:10 -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:      Sinusitis
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"

Hi Everyone,

Robyn J here, mom to Brenna.  She is 2 1/2 and has Crouzons syndrome.  I've
been mostly lurking lately.  Welcome back Joanne and to all the new
members.  This is a wonderful information and support group.  Glad to hear
that everyones surgeries and recoveries are going well.  You are always in
our prayers.

I am wondering if anyone has had a tough time dealing with sinus
infections.  Brenna is having the worst trouble this year.  It has been
going on since the beginning of October.  It started with an eye and sinus
infection then proceded to affect her ears as well.  She has tubes in her
ears as of last winter.  So far, she has been on tobramiacin, amoxicillan
twice, augmenton twice, and augmenton with amoxicillan once.  Because it
was not helping and eating up her insides, (she got a MAJOR yeast infection
and upset tummy) the Dr's took her off for a week.  Well, now the eye
infection is back and the sinus infection is again flaring up.

Anyone been down this road?  I am not sure what to do - a visit to the ENT
is probably our next step, but I hate to even think she will need another
surgery to correct this.

Hope you all had a happy thanksgiving.  We did - ate way to much of
course!!!
Hugs, Robyn J
=========================================================================
Date:         Sun, 29 Nov 1998 18:54:32 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:         Cristy Williams <CARLEE0604@AOL.COM>
Subject:      Fwd: Check out Carlee's Story
Mime-Version: 1.0
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This is a multi-part message in MIME format.

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From: CARLEE0604@aol.com
Return-path: <CARLEE0604@aol.com>
To: CARLEE0604@aol.com
Subject: Check out Carlee's Story
Date: Sat, 28 Nov 1998 20:31:10 EST
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 <A HREF="http://members.aol.com/carlee0604/baby/index.htm">Click here:
Carlee's Story</A>

--part0_912383673_boundary--
=========================================================================
Date:         Sun, 29 Nov 1998 19:52:28 +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: Ears
In-Reply-To:  <365F6613.DA300A3C@home.com>
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>
> you.  Allies dr suggested silly putty for ear molds, have used it for 8
> years with no problems.... one of the other moms said it can cause problems
> if it is hot weather.... We have never had that problem. I guess it depends
> on your climate.  We only use them for bath time and swimming.  Hope this
> helps...I dont really have any suggestions for the hats except to let him be
>

   The weather doesn't even have to be very hot if your luck (or
technique)  is bad.  We had to have silly putty removed from an ear
once -- we stuck to the silicone ear plugs after that and no more
problem!

Judy
Judy Gibson

jgibson2@erols.com
=========================================================================
Date:         Sun, 29 Nov 1998 20:13:17 +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: Ears
In-Reply-To:  <001d01be19b3$45552180$2a482499@default>
MIME-Version: 1.0
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> Andrew had eartube surgery just about a week ago and they mentioned that the
> "t-tubes" they were putting in had a 1% chance of leaving a hole in Andrew's
> eardrum.  Has anyone heard of this or had this happen to them?

    My oldest son (not Apert) had a residual hole in his eardrum
after his second set of PE tubes.  I was not terribly surprised.  He
had problems with his ears for years and the hole was just one more
thing for us to deal with.  The surgery was outpatient -- about 90
minutes.  They take a piece of the tissue that coveres the skull
muscles and patch the eardrum with that.  It actually doesn't stay in
place forever, it's just to cover the hole while it grows together
(they "rough up" the edges of the hole before placing the patch).  I
think the surgeon spent more time explaining all this to Rob (he was
10 at the time) than actually performing the surgery.  Compared to
everything else these kiddos go through, it's truly no big deal --
no significant post op pain,even;  but it is one more surgery with
one more anesthesia to worry about. HOWEVER 1% chance of this
happening means 99% chance that it won't.

> I also have a problem with ear plugs.  I got some that molded to the outside
> of Andrew's ears, but they kept falling out.  Plus, I need something that is
> quickly put in and stays automatically.  Andrew does not like people
> touching his ears (which I can't blame him).  Any suggestions?

      Rob's ENT recommended the silicone plugs.  We found that they
stayed pretty well for bathing with nothing else -- and he got pretty
good at putting them in himself by the time he was 4 or 5.  For
swimming, the ENT had him put on a rubber swim cap over them to hold
them in (they make much nicer nylon ones now).  The swim cap doesn't
need to keep anything dry, just keep the plugs from being dislodged
during vigorous play.

Judy
Judy Gibson

jgibson2@erols.com
=========================================================================
Date:         Mon, 30 Nov 1998 20:30:29 +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: Sinusitis
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"

Hi Robyn

What's in bloom around your home?

Regards
Ann
NZ
=========================================================================
Date:         Sun, 30 Nov 2098 21:10:26 +1100
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Chris Wood <cwsjw@SMART.NET.AU>
Subject:      Re: CPAP
MIME-Version: 1.0
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Hi Colleen,
I'm Sylvia, I have a 5year old daughter Emma with Aperts.  She is using
BIPAP at night.She has been using BIPAP for about 4 months.  It's difficult
to answer your questions as we are still in a trial period.  She has had
colds in this time but they have not developed into heavy bacterial
infections as she has often had in the past. This may not be due to the
mask!!
Emma does not have oxygen only BIPAP.  She was getiing to a point where she
was waking up in the morning with little energy, it would take her 2 hours
to get around to having breakfast most days.  Sleep studies were then
carried out and they found her oxygen levels were dropping far too low.
This was the reason for BIPAP.
Although changes in her wellbeing have not been dramatic we do believe
there have been some beneficial effects, even if just subtle ones such as(
mentioned above) colds don't seem as heavy, more stamina, better
communication and slighlty more body strength.However these can still vary
day-to-day.
I hope this information is of some use. I would like to hear how Jacob is
doing if you decide to use CPAP.
Regards Sylvia
----------
> From: Colleen Jones <coljones@PTDPROLOG.NET>
> To: APERT@LISTSERV.AOL.COM
> Subject: CPAP
> Date: Saturday, November 21, 1998 3:47 AM
>
> Hello all. Two quick questions. Is anyone out there using CPAP at night?
> If so, is it working.  Jacob (2yrs old) has been fitted with the mask but
> we have not started using it.  He was doing well, off O2 at night but now
> has a bad cold and is back on O2. I'm just wondering if using the CPAP
> would help him now.
> Thanks in advance for any responses.
> Colleen and gang
> coljones@ptdprolog.net
=========================================================================
Date:         Mon, 30 Nov 1998 20:49:37 -0600
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              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         "R. Fletcher" <darwin1@CONCENTRIC.NET>
Subject:      Re: Sinusitis
MIME-Version: 1.0
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Hi Robin,

     Rachel here. I am 25 and I also am having a very hard time with my sinuses
this year. I thought it would go away but I have been battling them since the
end of October. I will probably go to the doctor and get something better than
what I am taking now. I have always have had problems with them. Doctors
usually just give me something for them. They have never said anything about
surgery to fix them. It has gotten to be less of a problem since I have gotten
older.

Hope this helps. Hope everyone is well.

Rachel
Darwin1@concentric.net
=========================================================================
Date:         Mon, 30 Nov 1998 21:05:02 -0600
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              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Chad & Denise Graham <cgraham@INFOAVE.NET>
Subject:      SOMEONE IN NEW JERSEY
MIME-version: 1.0
Content-type: text/plain; charset="us-ascii"

Is there anyone in or around the New Jersey area.  There is a mother with a
4 1/2 year old son (with aperts), and is looking for someone near her.  If
you would e-mail me personally I will give her the message or give you her
e-mail adress.
        Hope everyone is doing well and had a good Thanksgiving!
 

                                        Denise Graham
=========================================================================
Date:         Mon, 30 Nov 1998 22:09:32 EST
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              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
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From:         TDeakins1@AOL.COM
Subject:      Self Esteem
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Does anyone know where I might find any reading on the effects on self esteem
caused by severe handicaps like Aperts?  My daughter is approaching
adolescence, is in middle school, and is beginning to pay attention to her
place in the social order of her peers.  I don't foresee an easy time of it
for her and would like some insight to the extent possible.
Thanks in advance.
Tony Deakins
=========================================================================
Date:         Mon, 30 Nov 1998 20:45:15 EST
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              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
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From:         Nodrmat26@AOL.COM
Subject:      Re: Zoey...Update
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In a message dated 11/27/98 9:15:02 PM Central Standard Time, pcbaas@HOME.COM
writes:
<<  The first time they
 put the Passe-Muir on, she started crying, everyone in the room was
 teary eyed. It was funny because people were passing by and probably
 wondering why are all these people so happy to see a baby crying.  >>
Claudia~
I sure wish Zoey would tolerate her Passy muir valve.  When we put it on her,
she cries and tries to pull it off and stops breathing.  I heard Zoey cry for
first three weeks of her life and it was VERY sad to not be able to hear her
all this time.  I'm so glad she's learned to make sounds...it almost makes me
cry sometimes.  I'm hoping her trach will be able to come out after her second
head surgery next summer...that would be nice.  Thanks for your input.
Christina
S.A.