Hi, it's the Younkins here!  We've been "lurking" again.  Had some summer
viruses and some vacationing that kept us from really keeping up with the
email.  Hope everyone is doing well. We were so glad to read that little
Sarah is doing well.  Wow--the midface and the vault remodeling sounds like
a lot of work at one time for one little head!  Is it unusual to do both at
the same time or were we just not aware that they do them together?  Let us
know--and we can't wait to hear about your miracle too!  Take care!  Kelly
=========================================================================
Date:         Sat, 15 Aug 1998 19:48:58 -0400
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Jack and Raquel <jara1@BELLSOUTH.NET>
Subject:      Two questions..
MIME-Version: 1.0
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Hi all,
I have two questions for you all and would appreciate those of you that
could answer them or give me your thoughts on them.
1)  Our Nicole is 10 months old and has yet to sleep the entire night
without waking.  When I mean waking she cries a bit but of course I pop
the bottle in her mouth she takes a few sips and falls back to sleep.
Or we put the pacifier in mouth and she'll fall back to sleep.  But she
has yet to sleep through the night without waking.  Is that common with
Aperts kids or is that just Jack and Raquel's spoiled daughter?

2)  This question is for the parents of the kids that have trachs.  Did
they have to use trachs from the beginning meaning the first few months
of life?  Or as time went by did their breathing problem worsen
therefore they had to get a trach?

I'm just curious because so far Nicole's breathing is pretty good, the
only time she has a problem is when she has a cold she really gets a
stuffy nose.  So I'm just hoping that it doesn't get worse with time.

Glad to hear that Sarah is doing well.  Nicole has an appointment on
Wednesday with the hand surgeon, so I'm assuming they might schedule her
first hand surgery then.  So here we go again with the scheduling of
surgeries, hopefully this time the first time will be a go.

Talk to you all soon...

Raquel Miller...
=========================================================================
Date:         Sat, 15 Aug 1998 21:57:37 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:         Copperhd87@AOL.COM
Subject:      Re: Two questions..#1
Mime-Version: 1.0
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Raquel,
     My Mitchell has sagittal craniosynostosis, he does not have Aperts.  He
is now 19 months old, and sleeps all the way thru the night without a pacifier
fix about 50% of the time.  We also go get him from his bed and let him sleep
with us if he wakes up and doesn't go right back to sleep.  We believe in
spoiling ourselves as well as Mitchell so we get little extra sleep and
snuggle at the same time.  There only babies once.

Resa
=========================================================================
Date:         Sat, 15 Aug 1998 22:25:30 -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: Two questions..
MIME-Version: 1.0
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Hi Raquel & Everyone Else,

Mike here (while Robin and Carmen Rae are vacationing)

Answering your questions #1, you spoiled her.  But that's okay, they are
only little once.  Robin and I have been fortunate in that Carmen Rae (7
months old) sleeps 12 hours each night.  This really works great for Robin
and she is staying home now and Carmen usually awakens around the 9am hour.

I have two other children (16 and 11), they both slept through the night
early on.  Jason (son to be 17) started at 2 weeks and Amanda at about 1
month.  I have been accused of using the "Jack Daniels" brand of formula,
but I just think they got their Dad's lazy, I like to sleep gene.

If you have to get up and go to work I would encourage you to not be so
quick to go running when you hear the first few cries.  If you stay at
home, then I probably would not pass up the opportunity to cuddle.  When
Carmen first came home, I took my turn of middle of the night feedings to
help Robin get some rest, but I also enjoyed  my time with Carmen.  I had
her all to myself with no competition.

Good Luck!

Mike

----------
> From: Jack and Raquel <jara1@BELLSOUTH.NET>
> To: APERT@LISTSERV.AOL.COM
> Subject: Two questions..
> Date: Saturday, August 15, 1998 7:48 PM
>
> Hi all,
> I have two questions for you all and would appreciate those of you that
> could answer them or give me your thoughts on them.
> 1)  Our Nicole is 10 months old and has yet to sleep the entire night
> without waking.  When I mean waking she cries a bit but of course I pop
> the bottle in her mouth she takes a few sips and falls back to sleep.
> Or we put the pacifier in mouth and she'll fall back to sleep.  But she
> has yet to sleep through the night without waking.  Is that common with
> Aperts kids or is that just Jack and Raquel's spoiled daughter?
>
> 2)  This question is for the parents of the kids that have trachs.  Did
> they have to use trachs from the beginning meaning the first few months
> of life?  Or as time went by did their breathing problem worsen
> therefore they had to get a trach?
>
> I'm just curious because so far Nicole's breathing is pretty good, the
> only time she has a problem is when she has a cold she really gets a
> stuffy nose.  So I'm just hoping that it doesn't get worse with time.
>
> Glad to hear that Sarah is doing well.  Nicole has an appointment on
> Wednesday with the hand surgeon, so I'm assuming they might schedule her
> first hand surgery then.  So here we go again with the scheduling of
> surgeries, hopefully this time the first time will be a go.
>
> Talk to you all soon...
>
> Raquel Miller...
=========================================================================
Date:         Sun, 16 Aug 1998 14:29:47 +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:      Re: Sarah  LeCara's surgery
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"

Greetings all

Congratulations to the LeCaras on their latest surgery.  Great to hear things have gone well for you all.

And yes please, can you tell us a bit more about what you mean by "total vault rebuild".

Cheers
Ann
NZ
=========================================================================
Date:         Sun, 16 Aug 1998 14:29:45 +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:      Re: Two questions..
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"

Hi Raquel

>1)  Our Nicole is 10 months old and has yet to sleep the entire night
>without waking.

I can't remember whether Amy was 3 or 4 before we finally got a full night's sleep, but it was only once we finally banished the dummy and she was happy to sleep without it.  However, even now some nights when I go in to say my final goodnight she is lying there with her mouth going in the dummy-sucking action - and she is 7+1/2yrs old!

The difficulty is finding the "right" time to get rid of the dummy.  Any time we were going to try she was heading for more surgery so we gave up until she was going a "long" time without an op.

Can't offer anything on the trachs question.

Best wishes
Ann
NZ
=========================================================================
Date:         Sat, 15 Aug 1998 20:31:14 -0600
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         baconsmith <bluenose@TELUSPLANET.NET>
Subject:      Re: Two questions..#1
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"

Raquel, EvaJessie was a terrible sleeper at that age too.  I would get up
countless times when she'd cry (it went in spells).  In self defense, my
kids went from cribs to double beds so that i could just crawl in with them
and not miss any sleep.  Crazy but it works for me.  I'm with Resa; this
morning my husband came to bring me coffee and found not only both the kids
in with me, but also both the cats!
I hope you can find something that works for Nicole and you too.
Pat
email to: bluenose@telusplanet.net
IM: onlypeach
It's never too late to have a happy childhood.  Tom Robbins (Still Life With
Woodpecker)
=========================================================================
Date:         Sat, 15 Aug 1998 23:41:45 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: Two questions..
Mime-Version: 1.0
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In a message dated 98-08-15 19:44:27 EDT, you write:

<< But she
 has yet to sleep through the night without waking.  Is that common with
 Aperts kids or is that just Jack and Raquel's spoiled daughter? >>

Zoey's Mom here, Zoey still doesn't sleep through the night.  She wakens just
enough to take some food, then is back to sleep.  Of course, she does have a
trach and that may have something to do with it.  Her sleep has always been a
little restless.

Hope this helps.
Christina
San Antonio
=========================================================================
Date:         Sat, 15 Aug 1998 23:43:41 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: Two questions..
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In a message dated 98-08-15 19:44:27 EDT, you write:

<< Did
 they have to use trachs from the beginning meaning the first few months
 of life?  Or as time went by did their breathing problem worsen
 therefore they had to get a trach? >>

Zoey's Mom here again.  Zoey has had her trach since three weeks old.  The
docs watched her Oxygen levels on monitors for 2 1/2 weeks before deciding she
wouldn't be able to go home without one.

Christina
San Antonio
=========================================================================
Date:         Sat, 15 Aug 1998 21:55:23 -0600
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Chad & Denise Graham <cgraham@INFOAVE.NET>
Subject:      sleeping thru night
MIME-version: 1.0
Content-type: text/plain; charset="us-ascii"

Daryl didn't sleep through the night until he was nearly 2.  We would have
a once in a blue moon night where he would sleep all night.  Now he sleeps
through the night about 3 times a week and the other 4 he wakes up and asks
for a drink and goes right back to sleep.  If he doesn't fall right back to
sleep, I lay down with him.  That is lazy on my part, but I like my sleep
now that I can get it and I also like the cuddle time.  As long as it is
not major in getting you up 12 times a night, do what you think is best.  I
would not run as soon as the first cry, but if they continue I would go
ahead and go.  Someday you will wish they would want you to comfort them.
God Bless!!
 

                                        Denise Graham
=========================================================================
Date:         Sun, 16 Aug 1998 08:45:10 EDT
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              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
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From:         Jenngram@AOL.COM
Subject:      Re: Two questions..#1
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Jordan still wakes in the middle of the night, but you know me...tough love
woman.....98% of the time I don't hear him and if I do he's just turning over
or mumbeling in his sleep...sometimes he cries out, but falls right back to
sleep. I do know that all people wake during lighter stages of sleep...for
Jordan he enters his first stage of "light" sleep around 11:30pm....3 hrs
after hes gone to bed. If we are too noisy it wakes him at times...so we are
extra quiet as we bed down. Of course...the second I go in his room to cover
him he wakes so I have decided to just let him be cold if he doesn't wake
up.....This week we have been up quite a bit in the middle of the night, but I
think hes going througha  growth spurt and is hungry, or he is getting more
teeth.....when his teeth pop in he always seems to get more hungry and wake
more forcefully.

Of course there could always be a more "medical" reason for the waking, but if
she seems to be breathing ok most of the time, its probablly just a normal
phenomna we all experience, she is just a bit more lonely then the rest of us,
and doens't yet realize the luxery of what a good night sleep really feels
like!!!!!!! I keep trying to convince Jordan of this one!!!!!

Jenn(Tampa/St. Pete)
=========================================================================
Date:         Sun, 16 Aug 1998 11:33:43 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:         Firefli007@AOL.COM
Subject:      Re: Two questions..
Mime-Version: 1.0
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Jenny here... from Georgia,

You guys... tell me more about this trach thing... I have had trouble sleeping
at night all of my life..... I have had deviated nasal septum surgery which
did help a bit, but do you think I need a sleep apnea test done.?..  No joke
I wake up at least once during the night fairly regularly...

I'll be 32 in November....and have learned more about Apert's since being n
this listserv than ever before.

I have copies of pics made of me when I was little and now,... so i will get
them in the mail this week!!
See ya,
Jenny
=========================================================================
Date:         Sun, 16 Aug 1998 15:26:27 +0000
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
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Comments:     Authenticated sender is <jgibson2@POP.erols.com>
From:         jgibson2@EROLS.COM
Subject:      Re: Two questions..
In-Reply-To:  <35D61E6A.7D3729AE@bellsouth.net>
MIME-Version: 1.0
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    What is her bedtime routine like?  Is she always asleep when you
put her in her bed?  If so, you haven't allowed her to learn to put
herself to sleep.  Not to worry, it's not too late.  The thing to do
is to put her in her bed when she's sleepy, but not entirely asleep.
You may have to stay with her and pat her back or talk to her gently
the first few nights, but try to leave her not quite asleep as soon
as you can manage that.  Once she learns to put herself to sleep,
she's much more likely to be able to put herself BACK to sleep if she
awakens in the middle of the night.

        OTOH, with Apert's kids, there is a higher incidence of
airway problems.  It doesn't sound as if she has a problem, but you
could ask her doc if a sleep study is indicated (it's a bit early,
most likely, lots of kids without Apert's are still awakening at 10
months).  My oldest doesn't have Apert syndrome, but he DID have
sleep apnea.  In his case, it was cured by removing his very huge
tonsils.  The poor kid never slept through the night until he was 4.5
years old -- and hasn't awakened at night since, unless he was sick.
Boy did I feel like a bad mother.

Judy
 

> I have two questions for you all and would appreciate those of you that
> could answer them or give me your thoughts on them. 1)  Our Nicole is 10
> months old and has yet to sleep the entire night without waking.  When I
> mean waking she cries a bit but of course I pop the bottle in her mouth she
> takes a few sips and falls back to sleep. Or we put the pacifier in mouth
> and she'll fall back to sleep.  But she has yet to sleep through the night
> without waking.  Is that common with Aperts kids or is that just Jack and
> Raquel's spoiled daughter?
>
>
Judy Gibson

jgibson2@erols.com
=========================================================================
Date:         Sun, 16 Aug 1998 15:50:15 -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:      hospitals
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Dori,
"He suggested two children's hospitals (one was Baptist).  Which do you
use?"

As far as we know, Baptist Hospital is not a childrens hospital.  It is
a very good hospital, but to our knowledge, not just for children like
Miami Childrens Hospital.

Nicole has always been seen at the Miami Childrens.  She had her tubes
and her cranial vault remodeling at Childrens.  The only thing that we
can think of is that Baptist may have a wing especially for children.

Remember, please give us a call when you come to Miami so we can meet.
The Dantur's from Argentina are coming in September and we will have a
chance to meet their little one.

Talk to you soon,
Raquel
=========================================================================
Date:         Sun, 16 Aug 1998 16:01:16 -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
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From:         foster <foster@ICONTECH.COM>
Subject:      Ultrasounds
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I was thinking today about all of the ultra sounds I had when I was having
Billy. I started having them weekly starting in the sixth month when they
found I had to much amniotic fluid. The only thing they could see was that
his hands were cupped and that he was very large. The fetal specialist did
all kinds of ultrasounds and she still had no idea what was happening. What
I was thinking about was the fact that he had heart defects which included
two holes in his heart. Should the Ultrasounds have picked up these defects?
I will be asking the heart doctor these things during our next visit because
at the time this all happened we were so worried about if these defects
could be corrected and if he would be alright. I am in no way blaming the
doctors for not knowing. I just thought that ultrasounds could find such
things. And since heart defects have not always been one of the conditions
related to Apert until more recently I was wondering if doctors who do
diagnos Apert before birth can find this defect or if they even know at all
about it.  Billy was born 1 month early could he have been in more danger if
he had been born the month latter?  I know this are questions that needs to
be answered by the doctors I wanted to find out if anyone else came across
this.Is this defect listed in the lists of things related to the syndrome?
I have only read about heart defects in two of the many articles I have read.

Well, just wanted to bring this up and see what can be found.

We got a picture yesterday from little Ashleigh Hamzsak and what a beautiful
little girl. She looks like she enjoys posing for the camera. I think all of
our kids are hams for the camera after seeing so many of them. I don't have
any pictures of any of your children where they look upset by having their
pictures taken. Proof positive they are happy children.

Hope Sarah is continuing to do better everyday.

Karen(PA)

P.S. Billy usually sleeps 11 hours everynight but, he still wakes up
screaming about once or twice a month.
=========================================================================
Date:         Sun, 16 Aug 1998 18:26:05 -0500
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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:         Tim Graves <twg@HIWAAY.NET>
Subject:      Re: Two questions..
MIME-Version: 1.0
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Nicholas was trached at 3 weeks old, at that time we were told it would be
until he was about 9 months old,  then at 9 months we were told til he was
2.. he finally got the trach out 4 months after his midface advancement at
almost 5 years old, but now has no problems at all.. he always had to sleep
with the apnea moniter on while trached and for about 6 months after just to
assure there were no problems.. he has now been trach free for 2 years...
Carol Graves

Jack and Raquel wrote:

> Hi all,
> I have two questions for you all and would appreciate those of you that
> could answer them or give me your thoughts on them.
> 1)  Our Nicole is 10 months old and has yet to sleep the entire night
> without waking.  When I mean waking she cries a bit but of course I pop
> the bottle in her mouth she takes a few sips and falls back to sleep.
> Or we put the pacifier in mouth and she'll fall back to sleep.  But she
> has yet to sleep through the night without waking.  Is that common with
> Aperts kids or is that just Jack and Raquel's spoiled daughter?
>
> 2)  This question is for the parents of the kids that have trachs.  Did
> they have to use trachs from the beginning meaning the first few months
> of life?  Or as time went by did their breathing problem worsen
> therefore they had to get a trach?
>
> I'm just curious because so far Nicole's breathing is pretty good, the
> only time she has a problem is when she has a cold she really gets a
> stuffy nose.  So I'm just hoping that it doesn't get worse with time.
>
> Glad to hear that Sarah is doing well.  Nicole has an appointment on
> Wednesday with the hand surgeon, so I'm assuming they might schedule her
> first hand surgery then.  So here we go again with the scheduling of
> surgeries, hopefully this time the first time will be a go.
>
> Talk to you all soon...
>
> Raquel Miller...
=========================================================================
Date:         Sun, 16 Aug 1998 21:11:09 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: Two questions..
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
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Dear Jack & Raquel:

In answer to your question about sleeping, I don't know whether I would
classify it as spoiled.  Emily sleeps through the night and has from a very
young age.  She's one now.  However, my son Nicholas, 4 years old, still wakes
up during the night almost every night.  He is thirsty, he needs another kiss,
etc.  I definitely don't think it has anything to do with Apert Syndrome,
though.  I do think it is each individual child.
When Emily does cry out at night, we don't go in to her right away.  We wait
and see how her crying is. She usually will go right back to sleep.  Sometimes
she does need a bottle in the middle of the night still, once in a blue moon,
usually after one of her surgeries when her system is off.

Can't help you with the trach question.  It sounds like most kids have had
them from a couple of weeks old, though.  I do know of a girl in NY here that
got her trach at around 3 years old because she started to have problems then
with apnea.  She was vomiting in the middle of the night and her color was all
off.  They say those are some of the signs of apnea, not getting enough
oxygen.

Hope this helps.

Janine
=========================================================================
Date:         Mon, 17 Aug 1998 14:43:43 +0000
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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:         Chris Wood <cepuvic@PEGASUS.COM.AU>
Subject:      Re: Two questions..
In-Reply-To:  <3026a28b.35d7832e@aol.com>
MIME-Version: 1.0
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Folks,
Seeing all this mail flying around on the subject of breathing and
sleep etc, I thought I might add my experiences for what its worth.

Emma is 4 and will be 5 in October. Her airways are rather narrow.
When she was younger she would go through phases of waking and crying
during the night and we thought at the time it might have been colic
or something similar, as her tummy seem rather rounded and tight.
Emma has always had problems with excess mucus from her sinuses which
was more of a problem in winter when there seem to be so many viruses
going around. It was not uncommon to find that she had vommited
during the night and we thought that this was due in part to her
swallowing lot of mucus (not that we got much support from the
medical fraternity for this theory). These periods of colds etc would
see Emma being listless and reluctant to wake up in the mornings.
She also went through several periods where she would cry when we put
her to bed and some times she would vommit within an hour or two of
being put to bed.

A couple of years ago my wife had difficulty rousing Emma that
morning but unlike other mornings Emma would not remain awake, she
was limp and listless. She was admitted to the Royal Childrens
Hospital (here in Melbourne Australia) and was found to have
aspirated pneumonia. It was also discovered that her CO2 levels were
high and her oxygen saturation levels were below 60%. This prompted
her admission to the intensive care unit. She was intubated and
remained in intensive care for 10 days, she was a very sick girl!
During this time the Ear Nose and Throat people decided to try and
create more room in her airways by removing her tonsils and adenoids.
There started to be a turn around in her ilness and it was assumed
that the problem was fixed.
 

> Date:          Sun, 16 Aug 1998 21:11:09 EDT
> Reply-to:      Information exchange and Internet safe haven for Apert Syndrome
>                and other craniofacial anomalies
> From:          Yonstein@AOL.COM
> Subject:       Re: Two questions..
 

> Dear Jack & Raquel:
>
> In answer to your question about sleeping, I don't know whether I would
> classify it as spoiled.  Emily sleeps through the night and has from a very
> young age.  She's one now.  However, my son Nicholas, 4 years old, still wakes
> up during the night almost every night.  He is thirsty, he needs another kiss,
> etc.  I definitely don't think it has anything to do with Apert Syndrome,
> though.  I do think it is each individual child.
> When Emily does cry out at night, we don't go in to her right away.  We wait
> and see how her crying is. She usually will go right back to sleep.  Sometimes
> she does need a bottle in the middle of the night still, once in a blue moon,
> usually after one of her surgeries when her system is off.
>
> Can't help you with the trach question.  It sounds like most kids have had
> them from a couple of weeks old, though.  I do know of a girl in NY here that
> got her trach at around 3 years old because she started to have problems then
> with apnea.  She was vomiting in the middle of the night and her color was all
> off.  They say those are some of the signs of apnea, not getting enough
> oxygen.
>
> Hope this helps.
>
> Janine
>
>
=========================================================================
Date:         Mon, 17 Aug 1998 14:43:44 +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>
From:         Chris Wood <cepuvic@PEGASUS.COM.AU>
Subject:      Re: Two questions..
In-Reply-To:  <3026a28b.35d7832e@aol.com>
MIME-Version: 1.0
Content-type: text/plain; charset=US-ASCII
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Folks,
Seeing all this mail flying around on the subject of breathing and
sleep etc, I thought I might add my experiences for what its worth.

Emma is 4 and will be 5 in October. Her airways are rather narrow.
When she was younger she would go through phases of waking and crying
during the night, we thought at the time it might have been colic
or something similar, as her tummy seem rather rounded and tight.
Emma has always had problems with excess mucus from her sinuses which
was more of a problem in winter when there seem to be so many viruses
going around. It was not uncommon to find that she had vomited
during the night and we thought that this was due in part to her
swallowing lots of mucus (not that we got much support from the
medical fraternity for this theory). These periods of colds etc would
see Emma being listless and reluctant to wake up in the mornings.
She also went through several periods where she would cry when we put
her to bed and some times she would vomit within an hour or two of
being put to bed.

A couple of years ago (Aug 96) my wife had difficulty rousing Emma
that morning but unlike other mornings Emma would not remain awake,
she was limp and listless. She was admitted to the (RCH) Royal
Childrens Hospital (here in Melbourne Australia) and was found to
have aspirated pneumonia. It was also discovered that her CO2 levels
were high and her oxygen saturation levels were below 60%. This
prompted her admission to the intensive care unit. She was intubated
and remained in intensive care for 10 days, she was a very sick girl!
During this time the Ear Nose and Throat people decided to try and
create more room in her airways by removing her tonsils and adenoids.
The plastic surgeons were also proposing to bring forward her
operation on the midface as a solution to her respiration
difficulties. There started to be a turn around in her illness and it
was assumed that the problem was fixed.
Some months later (1997) the RCH decided to do
a follow up and she was admitted for a monitoring. Her breathing
rate during sleep was falling to 3 breaths a minute and her oxygen
saturation levels were dropping to 60% or less. Her nose was operated
on to increase the size of her nostrils (small bones inside the nose
were broken and pushed aside).  This did not provide any noticeable
benefit.
We were eventually referred to a thorassic specialist who believed
that Emma was suffering from some type of sleep apnea but the concern
was that in normal people with sleep apnea, they will struggle
against any obstruction to their airways whilst trying to draw breath
whereas Emma did not. This raised the question as to whether there
was some compression of the brain stem from Emma's Apert syndrome.
To try and cut a long story short, Emma seems to be improving now she
is hooked up to a respiration machine each night and she seems more
happy to wear the mask than she did initially. There is the constant
fear of her vomiting during the night but so far this has not
happened and we are wondering if the vomiting was a result of her
elevated CO2 levels. She is due to have another scan soon that will
include the neck as well as her head.
At the moment it appears like we have turned a corner so we are
feeling a little happier.

 I think I have used up enough space for the
moment so I will bid you all farewell.

Cheers
Chris Wood
 

> Date:          Sun, 16 Aug 1998 21:11:09 EDT
> Reply-to:      Information exchange and Internet safe haven for Apert Syndrome
>                and other craniofacial anomalies
> From:          Yonstein@AOL.COM
> Subject:       Re: Two questions..
 

> Dear Jack & Raquel:
>
> In answer to your question about sleeping, I don't know whether I would
> classify it as spoiled.  Emily sleeps through the night and has from a very
> young age.  She's one now.  However, my son Nicholas, 4 years old, still wakes
> up during the night almost every night.  He is thirsty, he needs another kiss,
> etc.  I definitely don't think it has anything to do with Apert Syndrome,
> though.  I do think it is each individual child.
> When Emily does cry out at night, we don't go in to her right away.  We wait
> and see how her crying is. She usually will go right back to sleep.  Sometimes
> she does need a bottle in the middle of the night still, once in a blue moon,
> usually after one of her surgeries when her system is off.
>
> Can't help you with the trach question.  It sounds like most kids have had
> them from a couple of weeks old, though.  I do know of a girl in NY here that
> got her trach at around 3 years old because she started to have problems then
> with apnea.  She was vomiting in the middle of the night and her color was all
> off.  They say those are some of the signs of apnea, not getting enough
> oxygen.
>
> Hope this helps.
>
> Janine
>
>
=========================================================================
Date:         Mon, 17 Aug 1998 19:29:02 +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:      The Great Photo Exchange
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"

A belated thanks to Jasmyn Boczkowski for her lovely photos.  What a cutie.

Kelly Spadini and Beth Oppelt - your photos of our wee lass will go into the mailbox tomorrow.

Another first for Amy - she took herself into the x-ray room today while I sat outside and filled in some more forms.  Just as well she still wants cuddles when she comes out, I could end up feeling unneeded!  Today was our first step in gathering information for the surgeons to decide when and if they operate in the next year or so.

Have a nice day y'hear!

Ann
NZ
=========================================================================
Date:         Tue, 18 Aug 1998 01:19:44 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:         "(Marianne Camous)" <Camous@AOL.COM>
Subject:      Re: Two questions..
Mime-Version: 1.0
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In a message dated 8/15/1998 4:44:27 PM Pacific Daylight Time,
jara1@BELLSOUTH.NET writes:

<< )  This question is for the parents of the kids that have trachs.  Did
 they have to use trachs from the beginning meaning the first few months
 of life?  Or as time went by did their breathin >>

Evan was ok at birth- could just eat and breathe at the same time but got his
first cold at 4 weeks and was trached then. I might guess that if Nicole has
made it this far, she's got a fairly slim chance of needing a trach. Hope
that's the case.

As far as sleeping through the night, Evan used to wake up at 5-6 Am for a
bottle as his nurse left at 6Am and that way he would sleep through the early
Am chaos until the day nurse came at 8AM. When we decided that he neeeded to
sleep all night we had to just not give him that bottle and be mean for a few
weeks and he slept through!  Thankfully it was his "take charge" night nurse
who did it- Mom was spared that trauma (I had others). He got to the point
where he aould look up and see val and roll over and go back to sleep. He also
knew if he had a different nurse, he could manipulate them into giving in!!
But he became a champion sleeper-still is!

Marianne
=========================================================================
Date:         Tue, 18 Aug 1998 01:56:45 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:         "(Marianne Camous)" <Camous@AOL.COM>
Subject:      Re: Two questions..
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
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Yeah! We were told it would be a 12 month trach...what hogwash! The ENT
finally admitted that that was what he tells everyone as they can't stand to
hear anything else. It is nice to hear from the other side of the trach tie as
it were. Oh to sleep without a compressor and the pulse ox (AKA motion sensor)
in our ears! Or to have a family camping trip...we can't wait!

Marianne
=========================================================================
Date:         Tue, 18 Aug 1998 08:54:04 -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: Apnea:
MIME-Version: 1.0
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Dear Friends:

As several of you already know, we have been dealing with apnea for several
months now.  When Seth was little we had difficulty getting anyone to
listen to my complaints about his breathing because he looked so health,
didn't sleep during the day and was generally thriving.  We went as far as
to video tape his nightly episodes.  I took it to our local ENT and I doubt
that he even looked at it because if he had he would seen what we were
concerned about.  When Seth had his yearly team evaluation, I told every
nurse and doctor that came in about his breathing.  A sleep study showed
that he had "horrible obstructive apnea".  He had his tonsils and adenoids
removed within the month.  That seemed to take care of the problem.
However, at age seven the problem returned.  At first we made excuses for
his difficulty, he has a cold, he has allergies, etc. and this truly seems
to effect his breathing.  Finally, we had to acknowledge the possibility of
apnea again.  The sleep study indicated that his saturation levels were
down to 58% 4% of the night and something needed to be done. The
otolaryngologist gave us several options, remove part of the soft pallet
and uvula, CPAP, or trach.  After consulting Seth's cranial surgeon, we
have decided to go ahead with the mid-face advancement and see if it will
solve the problem.  Seth will have to be trached during the procedure and
for a while after.  Seth surgery is scheduled for September 15.

As new parents of a child with Apert Syndrome we didn't really understand
all that we were dealing with (still don't).  We had two other children but
that in no way prepared us for Seth's issues.  Our local doctors were not
knowledgeable either nor did they have the time or energy to get acquainted
with the problems of just one of many children.  Over the years I have
found that we are much better off to bypass our local doctors and drive to
St. Louis to consult the members of the cranial team.  We have several
books on Apert syndrome, but without the proper education, I don't really
understand most of what I read.  Plus, those case studies are unique to
those children.

Each child is different.  Emma's apnea manifested itself very differently
than Seth's did.  He didn't throw up, he was not listless nor did he have
difficulty getting up in the morning.  His breathing would stop and then he
would eventually gasp.  His chest moving up and down but no air was
transferred.  You know your child better than anyone.  If you perceive a
problem it is probably worth a phone call or a trip to see your team.

Dori A. Jefferson
djeff@midwest.net
=========================================================================
Date:         Tue, 18 Aug 1998 10:18:20 -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:         Tim Graves <twg@HIWAAY.NET>
Subject:      Re: Two questions..
MIME-Version: 1.0
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It'll finally get there Marianne !  We had the biggest celebration when Nicholas
got his out.. it was great.. and its so nice going on trips now without all the
related trach things... hang in there.. it'll be worth it !
Carol Graves

(Marianne Camous) wrote:

> Yeah! We were told it would be a 12 month trach...what hogwash! The ENT
> finally admitted that that was what he tells everyone as they can't stand to
> hear anything else. It is nice to hear from the other side of the trach tie as
> it were. Oh to sleep without a compressor and the pulse ox (AKA motion sensor)
> in our ears! Or to have a family camping trip...we can't wait!
>
> Marianne
=========================================================================
Date:         Tue, 18 Aug 1998 10:01:33 -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:         baconsmith <bluenose@TELUSPLANET.NET>
Subject:      Laurie -- tissue expansion
Mime-Version: 1.0
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        Hey Laurie, just wondering how jacob's fingers are doing this time
around.  How's the expander and where are you in the process?  We have a
lovely tissue flap gowing here on the side of EvaJessie's cheek.  It's
pretty near capacity now, but the docs say they usually can over inflate
them by another 30%.  Doc says whatever we get from now on will be gravy.
We see our surgeon in Vancouver for a look see in just 3 weeks.   Heading
for the home stretch and boy does it seem like it's nearly time.

how's your summer been   we've had excellent hot weather and lazy days.

bye for now
Pat in Calgary

email to: bluenose@telusplanet.net
IM: onlypeach
It's never too late to have a happy childhood.  Tom Robbins (Still Life With
Woodpecker)
=========================================================================
Date:         Wed, 19 Aug 1998 13:24:24 +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:      Re: Apnea:
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"

Dear Dori

You are so right!  And that is the danger of the assumptions doctors make about our children because they are so comfortably slotted into a known syndrome.  Well done in persuading the "experts" that you DID have problems with Seth and they were well founded.

But I am so very sorry to hear that Seth and your family are having to deal with this.

Every best wish
Ann
NZ
=========================================================================
Date:         Wed, 19 Aug 1998 13:24:28 +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:      Joanne Lindamood
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"

Greetings

Have just received the following from Joanne.  This lady really is getting more than her fair share!!

Regards
Ann
NZ
 

Hi!

Here's some news for you, and if you don't mind, share it with the list.

We can add surgery #12 to my list.  I had emergency gall bladder surgery
(removal) on Saturday, August 15.  That negative drug reaction was
nothing but BS.  I had a boat load of rocks in my gut!!  I'm doing ok.
The anesthetist talked with me the night before and gave me some drugs in
the anesthesia to prevent nausea!  Thank God!!  This was the easiest
surgery I have had, that I can remember!  Recovery is slow.  I'm having
problems eating solids.  I had the easy surgery, four holes in my tummy.
Unfortunately, that's not all the news.  The preliminary tests to find
out what was wrong included a chest x-ray.  That came back with a spot on
my lung.  The pulmonary doc said it was significant and needs to be
further tested.  Once I recoup from this surgery, I will go and see him.
Please keep me in your prayers.

Hope all is well!
Joanne
=========================================================================
Date:         Tue, 18 Aug 1998 22:18:33 -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:         foster <foster@ICONTECH.COM>
Subject:      Joanne
Mime-Version: 1.0
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Sorry to hear of your recent surgery and extremley concerned about the lung
findings.Our prayers will continue for you as well as everyone else. Take it
easy and take one thing at a time. God Bless you and please let us know how
you are doing.
The Fosters
=========================================================================
Date:         Tue, 18 Aug 1998 20:39:12 -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:         Richard Tait <rjrtait@MARS.ARK.COM>
Subject:      pictures
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"

Hello everyone!
Haven't been around too much lately because we have a very busy foster home
with 5 children in care, and a biological teenaged daughter.
We are hoping to adopt our 2 year old aperts daughter who we have had since
she was 6 days old.  Some of you have heard parts of our story; we aren't
allowed to share much because of confidentciality.  I'm sure that it is due
to the lack of "sharing" that we aren't very "in" on the picture list.  I
have attempted to have our Julia's picture released to everyone, but the
gov't says there is no real benefit for Julia at this time, and so we can't
release it.
We thank all those who have been kind enough to send pictures anyway, but
would still like to have some of the others as well.  It's selfish, because
I want her to be able to see everyone as she grows up.  I will continue to
try to change the gov't's decision, but until then, please don't forget us
if you can.
Thanks
Rene and gang
=========================================================================
Date:         Wed, 19 Aug 1998 22:01:25 -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:         Elizabeth de Silva <lizsilva@SRV1.TELCONET.NET>
Subject:      Re: Joanne
MIME-Version: 1.0
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Joanne,  you are in our prayers.  We are thinking of you and we will like to
know how you are doing so, please, keep us informed.

God bless you always.

Elizabeth
=========================================================================
Date:         Wed, 19 Aug 1998 20:35:55 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's hands
Mime-Version: 1.0
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Hello All!

Zoey's cast came off on Monday because her fingers were staying too wet and
her scabs were turning green and smelling real bad....anyone else have this
problem?  I wanted to let everyone know that Zoey's hand look wonderful.  When
they did a cast change last week, my eyes were wet.  If anyone is in the
military and gets stationed down here in San Antonio, you need to use Dr.
Howard.  He exceeded my expectations on Zoey's little hand.  I guess Zoey has
the "rosebud" hands ( I don't know much about the terminology) and I never
expected her hands to look so "normal".  They look like she's just missing a
finger and her fingers are a little thicker than others.  She's moving each
finger individually and I can tell she loves her new hand.  Thanks for
listening.

Christna
San ANtonio
=========================================================================
Date:         Wed, 19 Aug 1998 21:30:42 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:         JobeCST@AOL.COM
Subject:      Tyler's hand surgery
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Hi everyone  from the Jobe house!  Tyler has his first hand surgery tomarrow.
I've cried all day. I don't want to give his mitted hands up.  Dr. Genecov
told me tue. when I went for Tyler's pre-op that he diden't think he could
give Tyler a five finger hand but he would try.  My sister, Tyler and I will
leave at 3:00 a.m. in the morning so we can get to Medical City by 6:00 a.m.
His surgery is at 7:30 a.m.  Please pray for us.  Or me I guess. It's harder
on me than Tyler. I''ve been reading the e-mail and I had some questions?
Does anyone use Kenneth Sayler as there     craniofacial doctor?  What is
tissue expansion?  Will Tyler have fingerprints? Is there any pointers I need
for taking care of Tyler with his bent arm casts that he'll have for 2 weeks?
Can he crawl with his casts on?   Sorry so many question but he's my first and
I want to do every thing I can to help him.  What really makes me sad is that
he just started crawling and now he has this surgery.  But I know  he's in
God's hands and Chris & I pray every night for our little boy that has brought
so much joy to our lives .  Thank for your prayers and listening to a scared
mom.

                                                               Stacey
=========================================================================
Date:         Wed, 19 Aug 1998 21:15:54 -0500
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         JMuggli <jmuggli@CVTV.NET>
Subject:      Tyler Jobe
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 8bit

Stacey
My name is Jennie Muggli.  I am Sarah LeCara's Nana (grandma).  We just spent two weeks at the Medical City Hospital in Dallas.  Sarah's doctor's were Dr. Ken Salyer, Dr. Genecov , Dr. Hopkins and the neuro doctor's were Dr. Shaprio and Bruce.  They are Wonderful.  Sarah had a total vault reconstruction and mid face advancement (leforte  III ).  She is doing great and looks fantastic!  She will be flying  from Houston to Dallas to see Dr. Genevoc tomorrow for a check up. I think at 4pm.  I believe Dr. Salyer is out of town this week.  Sarah has her hands done in Houston by Dr. Shanque at Texas Children's but I can highly recommend Dr. Salyer's group in Dallas for cranial.  I have seen many children that Dr. Salyer's group has operated on and they all look great.  I am so glad my daughter and her husband decide on Dallas for Sarah's cranial surgery.  The hospital staff is also very wonderful.  There is a 34 year old man by the name of Paul who works on the PICU floor who has Ap!
ert's Syndrome.  If you have an
extra moment go talk with him.  He is an inspiration.
You will be in our prayers .  And remember you are in good hands.

Love to all,
Jennie Muggli
Sarah's Nana
=========================================================================
Date:         Wed, 19 Aug 1998 21:17:41 -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:         JMuggli <jmuggli@CVTV.NET>
Subject:      Zoey
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
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Glad to hear Zoey's new hands look great!  Hope she continues to do well.
Love,
Jennie Muggli
=========================================================================
Date:         Wed, 19 Aug 1998 22:21:45 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: Zoey's hands
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Content-type: text/plain; charset=US-ASCII
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In a message dated 98-08-19 20:36:35 EDT, you write:

<< Zoey's cast came off on Monday because her fingers were staying too wet and
 her scabs were turning green and smelling real bad....anyone else have this
 problem?  >>

YES!  Sarah V.  just got her cast off today.  Due to part of Apert's, she
sweat a whole lot and it was hard to keep it dry inside the cast.  It stank.
Ew!    She's had the cast on for three weeks.  Right now we are doing daily
dressings.  I've not  yet taken a peek at it as I start tomorrow.  Good luck
with  Zoey.  I'm thrilled the surgery went well.

Belinda Vicars
=========================================================================
Date:         Wed, 19 Aug 1998 20:53:14 -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:         Thomas Troudt <ttroudt@SPRYNET.COM>
Subject:      Derek's surgery
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Hello to all,
    Derek's cranialfacial surgery has been rescheduled for tomorrow
morning(Thurs.).  Please say an extra prayer for us tonight.  We go to the
Children's Hospital in Denver.  We have to leave our house at 5:15 am to
arrive on time.  I'm not looking forward to taking a tired hungry boy to
Denver that early.  It will be such a relief to make it through tomorrow and
know that our boy is fine.  I will let eveyone know how it went when we get
home sometime next week.  I thank you for your well wishes and prayer.  God
bless, Diana
=========================================================================
Date:         Wed, 19 Aug 1998 23:04:58 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:         Copperhd87@AOL.COM
Subject:      Re: Zoey's hands
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Christina,
     Thank you for sharing your joy with us.

Resa
=========================================================================
Date:         Wed, 19 Aug 1998 22:10:52 -0500
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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:         JMuggli <jmuggli@CVTV.NET>
Subject:      Derek's Surgery
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Good luck to the Troudt Family.  Derek, we will have you in our prayers.  Mom and Dad try to get some sleep tonight!  I know that the next 24 hours will be the longest.  Take Care
Love,
Jennie Muggli
Sarah's Nana
=========================================================================
Date:         Wed, 19 Aug 1998 22:22:32 -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:         Charles LeCara <cal@PHOENIX.NET>
Subject:      Re: Zoey's hands
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Yes we had the same problem with Sarah's hand after the surgery. Her =
hand sweated so much that the tip of her new pinky had a very bad sore =
on it. we wanted to take to the ER but the doctor said to rinse her =
wound with half strength hydrogen peroxide and  apply Neosporin and a =
fresh bandage .It healed up very fast after all that .You must keep the =
area's as dry as you can.

Good luck all of our love.
The LeCara's=20

-----Original Message-----
From:   NephiRose@AOL.COM [SMTP:NephiRose@AOL.COM]
Sent:   Wednesday, August 19, 1998 9:22 PM
To:     APERT@LISTSERV.AOL.COM
Subject:        Re: Zoey's hands

In a message dated 98-08-19 20:36:35 EDT, you write:

<< Zoey's cast came off on Monday because her fingers were staying too =
wet and
 her scabs were turning green and smelling real bad....anyone else have =
this
 problem?  >>

YES!  Sarah V.  just got her cast off today.  Due to part of Apert's, =
she
sweat a whole lot and it was hard to keep it dry inside the cast.  It =
stank.
Ew!    She's had the cast on for three weeks.  Right now we are doing =
daily
dressings.  I've not  yet taken a peek at it as I start tomorrow.  Good =
luck
with  Zoey.  I'm thrilled the surgery went well.

Belinda Vicars
=========================================================================
Date:         Thu, 20 Aug 1998 08:02:53 EDT
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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:         Jenngram@AOL.COM
Subject:      Re: hand surgery
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When Jordan had his first hand surgery, I was  abit saddened to "give up" his
baby mitten hadns, but after it was over and he had a thumb and pinkie and
could do soooo much more ..(including feed himself Cheerios as we go through a
box faster than the speed of sound) we haven't even looked back. we too ahev
been told that we may not get all 5 digits, but the only way to truely fail is
by not trying....so try we will. I am anxious....both in a nervous sense, and
an excited one, about the release of his pointer fingers (right hadn Sept 14,
left Nov 9)...I can onlt imagine the trouble he'll get into then!!!! Good Luck
!!!!!!

Now, while Jordan didn't have a cast ( he was bandaged and splinted), he was
suppose to be wrapped for 10 days...well after 5 he got everything off, so we
started bathing and cleaning the surgical site b/c it was nast green, yellow
and funky looking...then just rewrapped it. These bandages just seem to breed
grossness....I imagine it would be bad on an adult who knows how and why to
keep it clean and out of the mouth, toilet and so on...but w/
kids...GROSS.......we found aafter the graft sites took, that the best thing
for Jordan was ot strt the cleaning and debriding process....plus he healed
after 3 weeks.

Jenn(Tampa/St. Pete)
=========================================================================
Date:         Thu, 20 Aug 1998 09:02:32 -0400
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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:         Don Sears <dsears@SCRS.STATE.SC.US>
Subject:      Thoughts on hand casts/bandages
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We've got a couple of tips to pass on that you may all be already
using.......

First, we used a sling to help hold the heavy bandage up, but still gave
her breaks from using it by letting her arm down sometimes.  Second, to
keep the bandage cleaner, I I covered it with a thick gym sock when she
ate or was around anything messy....most of the icky stuff is left on
the sock, which of course is easily washed.  My big socks went all the
way to her elbow.  Save the nicer ones for dressy occasions!
------------------Don
=========================================================================
Date:         Thu, 20 Aug 1998 09:31:21 -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:         baconsmith <bluenose@TELUSPLANET.NET>
Subject:      Re: Derek's Surgery
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Derek, my kids and I are going to watch some old Thomas the Tank Engine and
I will be thinking about you.  In fact, i think of you every time I run into
a Thomas the tank Engine!
be strong, little boy.
And to Diana, we're there with you.
Pat and EvaJessie in Calgary
 

>Good luck to the Troudt Family.  Derek, we will have you in our prayers.
Mom and Dad try to get some sleep tonight!  I know that the next 24 hours
will be the longest.  Take Care
>Love,
>Jennie Muggli
>Sarah's Nana
>
>
email to: bluenose@telusplanet.net
IM: onlypeach
It's never too late to have a happy childhood.  Tom Robbins (Still Life With
Woodpecker)
=========================================================================
Date:         Thu, 20 Aug 1998 12:12:22 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:         Firefli007@AOL.COM
Subject:      Re: Zoey's hands
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CONGRATULATIONS ZOEY!!!  WELL DONE!
Jenny in georgia
=========================================================================
Date:         Thu, 20 Aug 1998 11:03:38 -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:         baconsmith <bluenose@TELUSPLANET.NET>
Subject:      Re: Zoey's hands
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Dear Christina, wha t great news about Zoey's hand.  I can tell you are so
pleased with the results and obviously, so is Zoey.  This must be such a
tricky procedure; so glad it turned out well.

pat and EvaJessie in Calgary
email to: bluenose@telusplanet.net
IM: onlypeach
It's never too late to have a happy childhood.  Tom Robbins (Still Life With
Woodpecker)
=========================================================================
Date:         Thu, 20 Aug 1998 13:54:32 EDT
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              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
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From:         Yonstein@AOL.COM
Subject:      Re: Tyler, Zoey and Derek
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Congratulations to Zoey on a successful hand surgery.  It must be great to be
so happy with the results.

To Tyler and Derek, best wishes on both of your surgeries.  We will be saying
a special prayer for you.

Has anyone heard from the Harmons or the Clark families?  Wondering how BJ and
family and Christine are doing.
 

Janine Krebs
=========================================================================
Date:         Thu, 20 Aug 1998 14:02:26 EDT
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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:         NephiRose@AOL.COM
Subject:      Re: Thoughts on hand casts/bandages
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In a message dated 98-08-20 09:00:41 EDT, you write:

<< Second, to
 keep the bandage cleaner, I I covered it with a thick gym sock when she
 ate or was around anything messy....most of the icky stuff is left on
 the sock, which of course is easily washed >>

I've been using saran wrap.  Seems to work pretty good.

Belinda Vicars
=========================================================================
Date:         Thu, 20 Aug 1998 22:29:28 -0400
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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:         foster <foster@ICONTECH.COM>
Subject:      Derek's Surgery
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Good luck to Derek and his faily. Also hope all goes well for Tyler. We will
be thinking of them during this week.

Way to go Zoey.

Things are not going to well right now for our Billy. His surgery was
rescheduled for next Wednesday but has been cancelled. He is much sicker
than the original sinus infection. He has started running a fever and a
doctors visit today showed that he has another virus on top of the other
infection. He is not eating much and we had to take turns the last two
nights holding him while he slept because of his breathing. I have not seen
him so sick in a long time. Surgery will not be done for at least two
months. Keep him in you prayers. And I will keep you posted on his condition.

Karen (PA)
=========================================================================
Date:         Fri, 21 Aug 1998 09:13:44 EDT
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              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
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              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Copperhd87@AOL.COM
Subject:      Billy's illness
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Karen,
     Billy will be in our prayers.  Hope he is better soon.

Resa
=========================================================================
Date:         Fri, 21 Aug 1998 14:47:42 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:      VARIOUS
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To Our long lost family-

In case anyone was wandering we haven't been on for about 6 weeks because our
computer crashed.  We had many different stories from Compaq and their service
centers and went round and round.  However, we are forever grateful to Sarah
LeCara's daddy Charles.  He was able to restore our computer so we didn't have
to spend hundreds of dollars through Compaq.  He spent many hours fixing us
after just getting back from Sarah's BIG surgery in Dallas.  I can't say
enough good things about Dr. Salyer and his staff.  We had great success and
now Sarah has also benefited from these great doctor's talent.  She hopefully
will get her trach out in several months.  I know what a blessing that will be
for her family.

Since we've been out of touch I know several new families have joined.  We
wish them all well and welcome them to this wonderful listserver.  I also want
to wish everyone well who had surgery and welcome them home as well as send
our prayers to anyone with upcoming surgeries.

Stacy--We are so glad to hear that Brooke is home.  It was great to meet you
while we were in Md. for vacation and hope that Brooke continues to improve.
Let us know if we can help you in any way with information, etc. to talk with
Dr. Salyer.
Do you know when the Out of Shadows Program will be broadcast here?

We received photos of Ashleigh in Australia.  What a cutie.  and also Thanks
to Joanne for her photo and letter.  You are truly a wonderful person and I
pray that you get a good report back from the spot on your lung.  Also hope
you are feeling better after the gull bladder surgery.  What rotten luck.
Hang in there!

Laurie Baily--Thanks so much for the chart you downloaded.  I finally
retrieved it just before we crashed. If anyone has an updated version since we
have been gone I would love a copy.

UPDATE:  Jonathan had his 3rd hand surgery on Aug. 3 and they released his
right index finger and did an osteotomy and put in a pin to straighten the
bone.  Needless to say once the OR bandage was changed our Houdini has freed
himself again.  This last time his pin came out with the gauze.  So I freaked
and we got to the surgeon's office where they did xrays and determined that
the bone had not moved and proceeded to do a new bandage and let the bones
continue to heal as is.  Our surgeon doesn't believe in casting so that he can
change the bandages frequently so that the skin doesn' t get infected or stay
wet with moisture.  However I have a real tough time with this last episode.
I'm not happy that the rewrap was done in  a way that enabled his pin to come
out.  I know it's hard when your dealing with a 20 month old (who is not under
anesthesia like the inital wrap) but I hear so many others talk about being in
casts and splints, it makes me wonder.  However, we love our surgeon and the
results he is able to obtain so I guess you go with what the doc says.
Jonathan continues to develop every day.  He is climbing on everything and
quite the little toddler now.  I can't believe we have been on this listserver
for almost 2 years now.

Before we crashed I asked if anyone had not received photos that were on the
picture exchange.  No one responded.  Please let me know if there is anyone
that we have missed who may have joined in late.

I know this has gotten long winded but I was going through withdrawal and am
glad to be back.

Brenda Siebert
Houston

P.S.  Has anyone heard from Christine.  Our prayers our with you and your
family.
=========================================================================
Date:         Fri, 21 Aug 1998 14:51:41 EDT
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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:         GSieb91515@AOL.COM
Subject:      Re: FW: (no subject)
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Don,

On a different subject-- I wanted to find out where we were in getting
Jonathan's page done. We sent the package several months ago and I just wanted
to make sure that you had everything that you needed.  The photos that I sent
you about a year and half ago were apparently lost so I wanted to make sure
that this last package was intact.  Please let me know so that I can sleep
better knowing that it is in your possession and that we will be up sometime
this year.

Thanks for all your wonderful help.

Brenda
GSieb91515@aol.com
=========================================================================
Date:         Fri, 21 Aug 1998 15:56:28 -0400
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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:         ROBIN L HILL <CARMENRAE@PRODIGY.NET>
Subject:      Re: Derek's Surgery
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So sorry to hear Billy isn't well.  We will keep him in our prayers.

The Hills (Mike, Robin, & Carmen Rae)

----------
> From: foster <foster@ICONTECH.COM>
> To: APERT@LISTSERV.AOL.COM
> Subject: Derek's Surgery
> Date: Thursday, August 20, 1998 10:29 PM
>
> Good luck to Derek and his faily. Also hope all goes well for Tyler. We
will
> be thinking of them during this week.
>
> Way to go Zoey.
>
> Things are not going to well right now for our Billy. His surgery was
> rescheduled for next Wednesday but has been cancelled. He is much sicker
> than the original sinus infection. He has started running a fever and a
> doctors visit today showed that he has another virus on top of the other
> infection. He is not eating much and we had to take turns the last two
> nights holding him while he slept because of his breathing. I have not
seen
> him so sick in a long time. Surgery will not be done for at least two
> months. Keep him in you prayers. And I will keep you posted on his
condition.
>
> Karen (PA)
=========================================================================
Date:         Fri, 21 Aug 1998 22:07:29 -0400
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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:         Steve & Stacy <sshb@EROLS.COM>
Subject:      Re: Two questions..
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Usually they are trached from the beginning.  Brooke had her trach at 2
months of age.  She really could have used it sooner.  She was diagnosed
with coanial atresia which is the blockage of the nasal passages at the
skull base. This will be able to be corrected after her midface.
                                           Stacy

Jack and Raquel wrote:

>
> 2)  This question is for the parents of the kids that have trachs.  Did
> they have to use trachs from the beginning meaning the first few months of
> life?  Or as time went by did their breathing problem worsen therefore
> they had to get a trach?
>
> Raquel Miller...
=========================================================================
Date:         Fri, 21 Aug 1998 22:18:38 -0400
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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:         Steve & Stacy <sshb@EROLS.COM>
Subject:      Re: Two questions..
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Brooke is 20 months and I have already started planning what we will do when that
time comes.  I am just scared that she will always have some kind of breathing
problem because the lungs have been comprimised for such a long time.
                                                       Stacy Bell

Tim Graves wrote:

> It'll finally get there Marianne !  We had the biggest celebration when Nicholas
> got his out.. it was great.. and its so nice going on trips now without all the
> related trach things... hang in there.. it'll be worth it !
> Carol Graves
>
> (Marianne Camous) wrote:
>
> > Yeah! We were told it would be a 12 month trach...what hogwash! The ENT
> > finally admitted that that was what he tells everyone as they can't stand to
> > hear anything else. It is nice to hear from the other side of the trach tie as
> > it were. Oh to sleep without a compressor and the pulse ox (AKA motion sensor)
> > in our ears! Or to have a family camping trip...we can't wait!
> >
> > Marianne
=========================================================================
Date:         Fri, 21 Aug 1998 21:17:46 -0500
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From:         Laurie Bailey <jkb@ELPASO.NET>
Subject:      Re: Tyler's hand surgery
MIME-Version: 1.0
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Hey Stacey,

Laurie Bailey here. Tissue expanders are little balloon-like objects placed
under the skin to expand the skin with saline in order to reduce the need
for skin grafts. Our son Jacob is on his third set of expanders for his
hands. They are inserted under the skin on the back of his hands at the
wrist area (so there is a scar on the back of his wrist). There is a tiny
tube that runs to a port (also under the skin) about midway between his
wrist and elbow. We inject his ports once a week with about .5 - .75 cc of
saline. This is a very gradual process but in the long run, Jacob will have
very few skin grafts. So far, he has only needed one. He has had thumbs and
pinkies released. Jake tolerates it well. We chose to inject at home
because he is more comfortable and less trips to Chicago. He even says that
daddy is the doctor after the injections.

As far as fingerprints, I've looked at Jake's digits and it looks like
there is a resemblance to fingerprints but not like one's we're familiar
with.

Hope it helps!
Laurie Bailey
jkb@elpaso.net

----------
> From: JobeCST@AOL.COM
> To: APERT@LISTSERV.AOL.COM
> Subject: Tyler's hand surgery
> Date: Wednesday, August 19, 1998 8:30 PM
>
> Hi everyone  from the Jobe house!  Tyler has his first hand surgery
tomarrow.
> I've cried all day. I don't want to give his mitted hands up.  Dr.
Genecov
> told me tue. when I went for Tyler's pre-op that he diden't think he
could
> give Tyler a five finger hand but he would try.  My sister, Tyler and I
will
> leave at 3:00 a.m. in the morning so we can get to Medical City by 6:00
a.m.
> His surgery is at 7:30 a.m.  Please pray for us.  Or me I guess. It's
harder
> on me than Tyler. I''ve been reading the e-mail and I had some questions?
> Does anyone use Kenneth Sayler as there     craniofacial doctor?  What is
> tissue expansion?  Will Tyler have fingerprints? Is there any pointers I
need
> for taking care of Tyler with his bent arm casts that he'll have for 2
weeks?
> Can he crawl with his casts on?   Sorry so many question but he's my
first and
> I want to do every thing I can to help him.  What really makes me sad is
that
> he just started crawling and now he has this surgery.  But I know  he's
in
> God's hands and Chris & I pray every night for our little boy that has
brought
> so much joy to our lives .  Thank for your prayers and listening to a
scared
> mom.
>
>                                                                Stacey
=========================================================================
Date:         Fri, 21 Aug 1998 21:21:41 -0500
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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:         Laurie Bailey <jkb@ELPASO.NET>
Subject:      Re: Laurie -- tissue expansion
MIME-Version: 1.0
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Hey Pat,

We are doing well with our expanders. It's going really slow this time
though because of scar tissue from the previous separations. I'm not
complaining, but, I wish we could just blink and it be over with already.

Glad to hear about the success of EvaJessie's expander. The more skin you
get, the better. When all is said and done, I'd love to see a picture. I'll
be sure to send you one after Jacob's has healed from the index finger
separation.

Talk to you soon!
Laurie Bailey
jkb@elpaso.net

----------
> From: baconsmith <bluenose@TELUSPLANET.NET>
> To: APERT@LISTSERV.AOL.COM
> Subject: Laurie -- tissue expansion
> Date: Tuesday, August 18, 1998 11:01 AM
>
>         Hey Laurie, just wondering how jacob's fingers are doing this
time
> around.  How's the expander and where are you in the process?  We have a
> lovely tissue flap gowing here on the side of EvaJessie's cheek.  It's
> pretty near capacity now, but the docs say they usually can over inflate
> them by another 30%.  Doc says whatever we get from now on will be gravy.
> We see our surgeon in Vancouver for a look see in just 3 weeks.   Heading
> for the home stretch and boy does it seem like it's nearly time.
>
> how's your summer been   we've had excellent hot weather and lazy days.
>
> bye for now
> Pat in Calgary
>
> email to: bluenose@telusplanet.net
> IM: onlypeach
> It's never too late to have a happy childhood.  Tom Robbins (Still Life
With
> Woodpecker)
=========================================================================
Date:         Fri, 21 Aug 1998 22:48:38 -0400
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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:         Steve & Stacy <sshb@EROLS.COM>
Subject:      Re: VARIOUS
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Brenda, Glad you are up and running again.  It was good meeting you and your
family also.  Brooke is continuing to do well.  We are going to stick with our
plastic surgeon.  After talking with him and the rest of our team we feel that
Brooke is in wonderful hands.  He has done so much with her already. Her crainal
facial is the extreme of severities when dealing with apert.  We saw some photos
of what he has accomplished with other kids and are very confident in what he will
eventually be able to achive.  I will keep Dr. Salyer in mind just incase anything
happens with the team here.
      Glad to hear that Johnathan's surgery went well.  Brooke's hand surgery will
not be until after the 1st of the year.  I wish it could be sooner but it is
probably for the best.  This way she can get her strength back after being in the
hospital for so long.
                                                 Stacy
 

GSieb91515@AOL.COM wrote:

> Stacy--We are so glad to hear that Brooke is home.  It was great to meet you
> while we were in Md. for vacation and hope that Brooke continues to improve.
> Let us know if we can help you in any way with information, etc. to talk with
> Dr. Salyer.
> Do you know when the Out of Shadows Program will be broadcast here?
>
>
>
> UPDATE:  Jonathan had his 3rd hand surgery on Aug. 3 and they released his
> right index finger and did an osteotomy and put in a pin to straighten the
> bone.
>