log9907d

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Date:         Wed, 21 Jul 1999 23:31:12 -0700
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
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              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         sheryl <slclem@ACCESS1.NET>
Subject:      question about hearing
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> Lucky you having Samantha hum for you - it was only a fortnight
> ago that Amy sang with me instead of covering her ears when I sang.

Ann, I found this statement very interesting as when I was visiting James,
my fiance with aperts, I noticed that every time a song was sung while we
were at church, Beth (his 8-yr old daughter with Aperts) would cover her
ears. She did not do this when the radio was on or when there was singing
on videos or tv programs. I was wondering if this signifies something I
should worry about or have checked or if it was just coincidental.

I want to thank all of you. I am learning so much and have so many
questions.

I also want to thank all those who emailed me personally. Max and Marianne,
James and Beth will be visiting for a couple of weeks over Thanksgiving. I
hope we will be able to meet you and your families then. James is one of
those who has never been in contact with anyone else with aperts and I know
he is looking forward to meeting you.

This brings me to another question, when you are having all these
appointments, are you ever recommended to any support groups or put in touch
with other families going through the same things? Seeems like that would
be a part of the total treatment program.

For those who missed my introduction post (a few weeks ago), I will be
getting married in February and James and Beth will be moving to Concord,
Calif (they currently live in Stuart, VA). I would be most delighted to
find a child close in age to Beth in the somewhat near vicinity.

I look forward to receiving my digest every night and learning about this
syndrome and getting to know each of you.

Sheryl
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Date:         Thu, 22 Jul 1999 21:33:57 +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: question about hearing
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>Ann, I found this statement very interesting as when I was visiting James,
>my fiance with aperts, I noticed that every time a song was sung while we
>were at church, Beth (his 8-yr old daughter with Aperts) would cover her
>ears. She did not do this when the radio was on or when there was singing
>on videos or tv programs. I was wondering if this signifies something I
>should worry about or have checked or if it was just coincidental.

Hi Sheryl

In Amy's case it is just plain oooh-my-mum-is-so-embarrassing behaviour!
...I just went to check in with her to make sure my singing WASN'T hurting her ears and she reckons it doesn't hurt her ears and I don't embarrass her, she does it because she wants to.

No, I don't really understand it either, but that's my daughter!

Maybe Beth just finds the closeness of the singers/singing too much and is softening the sound that she hears.

Hope your plans are going well.
Regards
Ann
NZ
=========================================================================
Date:         Wed, 22 Jul 2099 22:49:02 +1000
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
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              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Chris Wood <cwsjw@SMART.NET.AU>
Subject:      Re: Has anyone had shunts??
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-----Original Message-----
From: Karin Pittman <KMea854818@AOL.COM>
To: APERT@LISTSERV.AOL.COM <APERT@LISTSERV.AOL.COM>
Date: Wednesday, July 21, 1999 12:51 PM
Subject: Has anyone had shunts??

Hi Karin,

My daughter Emma needed a shunt after her first cranial surgery due to fluid
build up.
She had the shunt put in when she was 10 months old, she's now 5 and so far
we have had no problems.
The neurosurgeon shaved a small section of hair at the back of her head, it
was not a long procedure. She has a small valve just under the skin which
you can't see as it's covered by her hair, there is a tube which leads from
here around her neck, down her chest (all under the skin) and the fluid
drains into her abdominal cavity.

Hope this helps
Regards
Sylvia Wood

>Hi everyone!
>My 5 month old son Mason Pittman has enlarged ventricles in his brain. He
>just had a cat scan which showed this. Our cranio-facial surgeon said that
>it doesn't mean that it's time for his first cranial surgery. He said that
>what a neurosurgeon might do is put a "shunt" in his brain to relieve the
>fluid build up. He also had a seizure a week & a half ago. His head is
>growing at an incredible rate. He's in the 98th percentile for his head
size
>& age.
>
>Has any other Aperts child experienced this problem?   Has anyone had the
>surgery for the shunts?
>
>I always appreciate your responses to my questions. It seems like I have
>more questions than answers for anyone.
>
>Sincerely,
>Karin Pittman, mommy of Mason Pittman
=========================================================================
Date:         Thu, 22 Jul 1999 10:03:45 -0500
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
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From:         Judy Amerman <jamerman@UTI.COM>
Subject:      Re: I need your input
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I have received several letters to this issue but still am lacking =
exactly what I need from some and still fell I need more support. =20

In thinking more on this, if you could please send a "to whom it may =
concern letter' and WHY you feel that this should be considered =
medical, please respond. In doing this, you yourself can use these =
letters to you own advantage when needed. You have all seen what Nick's =
drs. have written and was not good enough for Great West. We need to =
stick together here and use our rank because many times or at one point =
and time, we will all get screwed. =20

Thanks in advance.

Judy
jamerman@uti.com

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Date:         Thu, 22 Jul 1999 12:02:20 -0500
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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:         Judy Amerman <jamerman@UTI.COM>
Subject:      Re: I need yur input
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I just got off the phone with medical management and have found out how =
to start the appeal process. I hope to have enough ammunition by the =
middle of next week. =20

judy
jamerman@uti.com

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Date:         Wed, 21 Jul 1999 08:41:17 -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:         Jim and Kelly Younkin <JimandKelly@YOUNKIN.COM>
Subject:      Re: Has anyone had shunts??
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Hi Karin! Our Sara, now 3, had a shunt put in when she was 11 months old.
We noticed puffiness around her soft spots on her head on a Sunday and saw
her neurosurgeon on Monday. They did a CT scan and told me that her
ventricles were very enlarged and that she would need a shunt. I asked if
they would call us with an OR time and he said "Oh, you're not leaving.
We're going to admit her immediately so we can watch her and we'll do the
surgery first thing in the morning." Needless to say, I was overwhelmed!
The surgery went fine, but she vomited for 10 days after we went home. They
told us it was probably a combination of the pressure changes in her head
and a stomach virus she caught in the hospital. Once that was over though,
we've had absolutely no problems since. (Although we've made ourselves
experts on what to watch for if a problem does occur!) You can email me
back privately if you want. Hope this helped! Take care. Kelly Younkin
Original Message-----
From: Karin Pittman <KMea854818@AOL.COM>
To: APERT@LISTSERV.AOL.COM <APERT@LISTSERV.AOL.COM>
Date: Tuesday, July 20, 1999 10:52 PM
Subject: Has anyone had shunts??

>Hi everyone!
>My 5 month old son Mason Pittman has enlarged ventricles in his brain. He
>just had a cat scan which showed this. Our cranio-facial surgeon said that
>it doesn't mean that it's time for his first cranial surgery. He said that
>what a neurosurgeon might do is put a "shunt" in his brain to relieve the
>fluid build up. He also had a seizure a week & a half ago. His head is
>growing at an incredible rate. He's in the 98th percentile for his head
size
>& age.
>
>Has any other Aperts child experienced this problem?   Has anyone had the
>surgery for the shunts?
>
>I always appreciate your responses to my questions. It seems like I have
>more questions than answers for anyone.
>
>Sincerely,
>Karin Pittman, mommy of Mason Pittman
=========================================================================
Date:         Fri, 23 Jul 1999 05:21:56 -1000
Reply-To:     Information exchange and 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:         "Joana H. Magno" <magnomd@ALOHA.NET>
Subject:      Families with Apert in Los Angeles area
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We were on vacation in Las Vegas and a young couple came up to us, with a baby
in a stroller, wanting to meet us because they recognized that our daughter had
Apert's. The young mother was so delighted to see a 5 year old with Apert's
that she had tears in her eyes!

They live in the Los Angeles area, and have not had the opportunity to meet
other families. They are aware of Teeter's Page and the list, but do not have
access to the internet. I told them that I would contact you on their behalf,
and get a list of folks who would be willing to connect with them.

Please contact me via the list or personal e-mail with your names, addresses,
phone numbers. and I will forward it to this couple.

Thanks!

Joana Magno

email: magnomd@aloha.net
=========================================================================
Date:         Fri, 23 Jul 1999 11:54:35 EDT
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
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From:         "(Marianne Camous)" <Camous@AOL.COM>
Subject:      Re: thumb surgeries--question---
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In a message dated 7/21/1999 2:35:34 AM Pacific Daylight Time,
howrdnan@IHUG.CO.NZ writes:

<< Or is this the multi-hundred dollar one >>
Unfortunately, yes. As we are heading off on vacation for 10 days and I am
still delusional enough to think I might get some quiet time for myself, I
plan to bring it and do some reading....I'll send a synopsis if I am
successful...With surgery in Sept, it has become a "deadline" so I might
actually get it done ;)

Marianne
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Date:         Fri, 23 Jul 1999 16:22:13 EDT
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
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              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Debbie Shepherd <Dshep9141@AOL.COM>
Subject:      Re: Thumbs, feet, and ear tubes
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Hi brenda, my name is debbie shepherd. My daughter Jillian was born 12/2/96 !
She has an undiagnosed cranial facial syndrome very similar to aperts. I just
thought it was funny that Jonathon and Jillian were born so close together.
Wish we lived closer! (we are from PA). We enjoyed Jonathons pictures and
pictures of your family. We finally got ours copied and they will be going
out soon!! Happy summer love Debbie
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Date:         Fri, 23 Jul 1999 14:51:08 -0700
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         "Brent E. Young" <beyoung@IX.NETCOM.COM>
Subject:      Re: Families with Apert in Los Angeles area
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Hi,

I don't live in the Los Angeles area but i do live near Sacremento,
which is about an eight hour drive from Los Angeles. I would be
interested in meeting them. I am 17 years old with Aperts.

My name is Kelly Spadini
My mom's name is Denise Young
Our Address is 909 Woodlake Lane
Roseville Ca 95661
Our phone number (916) 786-8804
e-mail address: beyoung@ix.netcom.com

Bye,
Kelly Spadini
=========================================================================
Date:         Fri, 23 Jul 1999 16:55:58 -0700
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
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              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Christine Clark <apertnet@IX.NETCOM.COM>
Organization: Apert Support & Information Network
Subject:      Re: Database etc.
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Wendy,

I don't really know what is going on with your efforts for your sister
as I am SOOOOOO far behind on e-mails. If you would like a list of
others with Apert, not all are on this listserv, please let me know and
I will get some more info. from you about Jenny and add her to my
nerworking list. Then I will send you a copy of the list that has over
80 names, address', etc. of members facing the challenge of Apert. I
think it will really help you to contact others near you or of Jenny's
age.

I will do my best to get the list to you as soon as I can as I am
swamped from being ill so long.

Hope to hear from you and Jenny soon!

Christine Clark
Apert Support & Info. Network
P. O. Box 1184
Fair Oaks, CA 95628
(916) 961-1092 (phone + fax)
apertnet@ix.netcom.com
=========================================================================
Date:         Fri, 23 Jul 1999 20:57:20 -0500
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
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From:         Judy Amerman <jamerman@UTI.COM>
Subject:      Re: Has anyone had shunts??
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Karin,

Nick was diagnosed with Hydrocephalus at about two months of age. He had a
v-p shunt inserted at four months old and so far we have been very
fortunate, and have not had any problems.

Judy
----- Original Message -----
From: Karin Pittman <KMea854818@AOL.COM>
To: <APERT@LISTSERV.AOL.COM>
Sent: Tuesday, July 20, 1999 9:49 PM
Subject: Has anyone had shunts??

> Hi everyone!
> My 5 month old son Mason Pittman has enlarged ventricles in his brain. He
> just had a cat scan which showed this. Our cranio-facial surgeon said
that
> it doesn't mean that it's time for his first cranial surgery. He said
that
> what a neurosurgeon might do is put a "shunt" in his brain to relieve the
> fluid build up. He also had a seizure a week & a half ago. His head is
> growing at an incredible rate. He's in the 98th percentile for his head
size
> & age.
>
> Has any other Aperts child experienced this problem?   Has anyone had the
> surgery for the shunts?
>
> I always appreciate your responses to my questions. It seems like I have
> more questions than answers for anyone.
>
> Sincerely,
> Karin Pittman, mommy of Mason Pittman
>
=========================================================================
Date:         Sat, 24 Jul 1999 17:25:16 +1200
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
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From:         Howard & Ann <howrdnan@IHUG.CO.NZ>
Subject:      Re: Thumbs, feet, and ear tubes
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Greetings Bill and family

Welcome to the Listserver, great to hear from you.

> She is very persistent and will refuse help most
>of the time so that she can do by herself whatever task is at hand.

Our Amy (8yrs old) would rather we did everything for her!

> Her toenails give
>her a lot of pain when being cut and are very thick.

Same with Amy. What I am trying to do is have the routine of cutting finger- and toenails on Mondays, as she goes swimming and then has a long soak in a bath, so the nails are nice and soft. It seems to make it more comfortable for her. I also use clippers rather than scissors wherever possible.

I recently found a "foot spa" at a garage sale and Amy loves it - and I'm sure it must be good for her feet.

Keep in touch.

Ann, Howard and Amy
New Zealand
=========================================================================
Date:         Sat, 24 Jul 1999 17:25:30 +1200
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
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From:         Howard & Ann <howrdnan@IHUG.CO.NZ>
Subject:      Blisters and ops
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>Except, as a matter of fact, Jonathan did go to the hand surgeon today
>because one of his fingers became inflamed and swollen. It was infected from
>a small blister looking sore on the inside of his ring and middle fingers.
>Does anyone else have this problem with blisters (?) forming in between the
>fingers?

Brenda, Amy had something like this last year on her thumb, but it was following a scrape which got infected (she took great delight in having her teacher aide do her writing for her). Do you know if Jonathan had damaged the skin before the blister appeared, or is it "just" blisters?

Amy goes in on the 6th for removal of the nevus on her scalp and we are off to the CF clinic on the 17th for the next discussion on the CF surgery being considered. Aaaaaaahhhhhh!!

Ann
NZ
=========================================================================
Date:         Sat, 24 Jul 1999 08:04:24 EDT
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
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From:         GSieb91515@AOL.COM
Subject:      Re: Blisters and ops
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Ann,

It looks like an irritation caused by the two fingers rubbing together. Not
actually a blister but similar. I was told that the microbes on the surface
of the skin entered the sore and caused the infection. I hope this isn't
going to be an ongoing battle. Good luck at the CF meeting.

Brenda
=========================================================================
Date:         Sat, 24 Jul 1999 18:55:11 EDT
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
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              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Karin Pittman <KMea854818@AOL.COM>
Subject:      Re: Has anyone had shunts??--thank you!!!!!
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Hey everyone,
I just wanted to thank everyone who responded to my email about Mason's
possible shunt. You all really set my mind at ease.
When I called my husband to tell him that Mason MAY need a shunt because of
his enlarged ventricles, he started to cry. It's been so hard on us (as
everyone else with aperts in their family.) We can't cope with one more
thing. We just can't. Of course, we would do what we have to do, but that's
just how we feel.

As it turned out, we sent the c-t scan off to Dallas and Dr. Fearon and his
pediatric neurosurgeon & the radiologist agree that it's just one more thing
to monitor. He still has fluid between his brain & skull, so the pressure
isn't too great. So, no shunt for now. They said that Aperts kids have
larger ventricles than normal.

I can't even put into words how grateful I am for the time that you all take
to send an email. This helps us sooooooooooooo much.

If we ever get ahead (or afloat) financially, we would love to meet all of
you, like you did at Myrtle beach. From the emails I've read, it sounded
like a great time! I love the beach.

Thank you all so much,
Karin Pittman---mommy of 5 month old Mason Pittman
=========================================================================
Date:         Sat, 24 Jul 1999 23:18:18 +0000
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
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              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         "J. G. Lindamood" <chanan8@JUNO.COM>
Subject:      crab session - sorry
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Hi everyone!

It's been a while since I have written. I sorta fell out of the loop for
the last week or so. In comparison to many other people in this world,
things are okay here. They are not great. My car was in the garage
twice last week, racking up a $700.00 bill, and it's still does not
start. My long distance phone privileges were cut off because I didn't
have the $$ to pay the phone bill. Which meant I was cut off from the
this list because to connect to the net is a long distance call. My foot,
ankle, knee, wrist and elbow on my right side are causing a lot of
discomfort. Mom is wondering if the problem isn't Apert related as
opposed to "old age" or arthritis. I have a Dr. appointment Monday.
Three weeks ago she put me on 800 mg ibuprofen three times a day for two
weeks. She said if that didn't help, I was off to the orthopedic
specialist. My counselor and I are making progress, but that means I
am dealing with (or at least trying to deal with) some painful issues. I
took a four hour nap this afternoon. When I woke up I could not figure
out if it was 9:00 Saturday night or Sunday morning. Either way, I
escaped from this world for four hours and not much has changed. I have
my magic wand sitting here on my keyboard. Every now and then I twirl it
and watch the glitter and sparkles flow. I realize it really does not
hold the magic I wish it did, it's just neat to watch.

Okay, I'm done with my crab session. I apologize for unloading.
Joanne
=========================================================================
Date:         Sat, 24 Jul 1999 21:28:32 -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
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From:         rreed <rreed@CABLEONE.NET>
Subject:      Having a bad day!
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Hi Joanne, Iam sorry to hear that you have been having some bad days. I hope
and pray that things will look up soon. Has the Ibuprofen work for your pain
in your foot,wrist,knee,ankle and elbow? I've been taking Ibuprofen for
about 2 years now for Arthritis pain, at least thats what my Doc. says it
for.It helpsme but it doesn't take all the pain away. I hope it's helping
you! I know this has helped me, but I have those kind of days too and I just
pray about it and talk to a good friend. It helps me and it can help you. If
you ever need a friend to talk to,Iam here to listen.Just E-mail me
privatly. Iam a good listener or you can call me at(209)524-2141 Calif.
time. The best time to call is in the afternoon. Well I gota go. Take Care
and I hope that things will be looking up soon.
=========================================================================
Date:         Sun, 25 Jul 1999 09:47:45 EDT
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
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From:         BBarn60368@AOL.COM
Subject:      Nevus
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Content-Transfer-Encoding: 7bit

Ann:
What is the nevus?

Alice in Orlando, FL.
=========================================================================
Date:         Sun, 25 Jul 1999 13:39:58 EDT
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              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
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From:         "(Marianne Camous)" <Camous@AOL.COM>
Subject:      Re: Blisters and ops
MIME-Version: 1.0
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In a message dated 7/24/1999 12:06:45 AM Pacific Daylight Time,
howrdnan@IHUG.CO.NZ writes:

<< Does anyone else have this problem with blisters (?) forming in between the
>fingers? >>
Evan had one a couple of months after surgery. It turned out to be a "stitch
abscess" One of the absorbable sutures (monocryl, it looked like- he always
"spits" vicryl from incisions) didn't absorb and caused the problem. I didn't
see it at first- it took really good lighting and the younger eyes and
cleaner contact lenses of our pediatrician. Once removed, it healed up just
fine- only a minor blip in the radar screen!!

Marianne
=========================================================================
Date:         Sun, 25 Jul 1999 20:24:49 EDT
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Karin Pittman <KMea854818@AOL.COM>
Subject:      Re: crab session - sorry
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In a message dated 99-07-24 23:20:14 EDT, you write:

<< In comparison to many other people in this world,
things are okay here. They are not great. My car was in the garage
twice last week, racking up a $700.00 bill, and it's still does not
start. My long distance phone privileges were cut off because I didn't
have the $$ to pay the phone bill. Which meant I was cut off from the
this list because to connect to the net is a long distance call. My foot,
ankle, knee, wrist and elbow on my right side are causing a lot of
discomfort. Mom is wondering if the problem isn't Apert related as
opposed to "old age" or arthritis. >>

Joanne,
We've never met or anything, but I read your email & I can kind of relate.
Sometimes life is just crappy. It doesn't seem to matter how many crappy
things happen all at once. It's not like crappy things have to take their
turn to happen to you.

I hope that you do get what you wish for. At least something.

Take care of yourself,

Sincerely,
Karin Pittman (5 month old Mason's mom)
=========================================================================
Date:         Mon, 26 Jul 1999 00:49:59 EDT
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Lisa Guyette <LAM1126@AOL.COM>
Subject:      Re: Families with Apert in Los Angeles area
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In a message dated 99-07-23 11:20:42 EDT, you write:

<< magnomd@ALOHA.NET (Joana H. Magno) >>
Joana,
I will send you my number through your email. We live an hour away from Los
Angeles. But our families live in Los Angeles and our daughter Samantha's
doctors and surgeries will be in LA. Hope I can help.

Love, Lisa Guyette
=========================================================================
Date:         Sun, 25 Jul 1999 23:29:27 -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:         sheryl <slclem@ACCESS1.NET>
Subject:      Re: APERT Digest - 23 Jul 1999 to 24 Jul 1999 (#1999-203)
MIME-Version: 1.0
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Joanne, Have you ever tried naproxyn for your pains. I find that Ibuprofin
does absolutely nothing for the arthristis in my knee when it flares up but
naproxyn does. I take 800 mg 3 times daily for the pain when it flares up.
If you haven't tried naproxyn, do ask your doctor about it.

Amy, so glad you mentioned the foot spa. I have one that I never use and in
my cleaning frenzy this week put into the donation box. I will now remove
it and when James and Beth come at Thanksgiving see if it is something they
enjoy. Thanks for the suggestion.

Sheryl
=========================================================================
Date:         Mon, 26 Jul 1999 07:19:17 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:         Bill Wetherow <BillWeth@AOL.COM>
Subject:      Re: APERT Digest - 24 Jul 1999 to 25 Jul 1999 (#1999-204)
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In a message dated 7/25/99 9:01:54 PM Pacific Daylight Time,
LISTSERV@LISTSERV.AOL.COM writes:

<< Blisters >>
My daughter (11 now) had infections between her fingers and toes where the
creases were deep and hard to clean if we weren't careful. Her toes are
especially tender so cleaning is always a struggle. Proper hygiene took care
of the problem. Glad to hear that everything healed up OK.
Love, Bill
=========================================================================
Date:         Mon, 26 Jul 1999 09:08:18 -0400
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Jim and Kelly Younkin <JimandKelly@YOUNKIN.COM>
Subject:      Re: Thumbs, feet, and ear tubes
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Hi Debbie! Our Sara was born 3/26/96 w/ Apert syndrome and we live in PA
also. We are in Lewisburg--where are you?! Let us know. Kelly Younkin
-----Original Message-----
From: Debbie Shepherd <Dshep9141@AOL.COM>
To: APERT@LISTSERV.AOL.COM <APERT@LISTSERV.AOL.COM>
Date: Friday, July 23, 1999 4:24 PM
Subject: Re: Thumbs, feet, and ear tubes

>Hi brenda, my name is debbie shepherd. My daughter Jillian was born 12/2/96
!
>She has an undiagnosed cranial facial syndrome very similar to aperts. I
just
>thought it was funny that Jonathon and Jillian were born so close together.
>Wish we lived closer! (we are from PA). We enjoyed Jonathons pictures and
>pictures of your family. We finally got ours copied and they will be going
>out soon!! Happy summer love Debbie
=========================================================================
Date:         Mon, 26 Jul 1999 07:56:50 -0700
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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:         rreed <rreed@CABLEONE.NET>
Subject:      You're not a dummy!
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Hi Bill Max here, You are not a dummy,It took me awhile to get on too. We
all meet at 6:00 p.m west coast time 9:00 p.m. east coast time on Sunday. I
go through Teeter's page where it says Aperts chat. and then I click on
Disscussions then click on Aperts chat, at least thats the way I go and it
works for me. Maybe someone here has a easyer and better way and will tell
you.I hope to chat with you next Sunday! How's Nancy? Tell I said hi. Take
Care and talk to you soon.Max
=========================================================================
Date:         Mon, 26 Jul 1999 12:10:07 -0400
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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:         Colleen Jones <coljones@PTDPROLOG.NET>
Subject:      Jacob's hand infection
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Thanks again to all who have kept Jacob in their prayers for his hand
infection. We have now gone about 8 weeks without it reoccuring so we are
hoping it is healed. He is still on a low dose of the antibiotic Vantin
for a few more weeks. Hopefully we have avoided the Broviac and IV
antibiotics!! Hope everyone else is well.
Colleen Jones
coljones@ptdprolog.net

PS: Debbi Shepard, where in PA are you from?
=========================================================================
Date:         Mon, 26 Jul 1999 20:57:49 -0400
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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:         Amy <AIRVIN@COLUMBUS.RR.COM>
Subject:      RED system
MIME-Version: 1.0
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This is a multi-part message in MIME format.

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These questions are for anyone out there who has had experience with the =
RED system of midface distraction. My son, Alex, will be undergoing it =
on August 10th. We go for the preadmission testing this Wednesday.
1) How long does the surgery take?
2) Was a blood transfusion required either during or after surgery?
3) How much post-op pain is involved realistically. Are they able to use =
the special self-administering pain pumps with children?
4)Is it difficult for the person to eat with the RED device on? Any =
survival suggestions are welcome!
5)What about bathing with the device on? Is that a problem? I assume =
that the device does not rust, but can it go into the shower?
6)Has anyone been permitted in the OR until their child is asleep pre-op =
and/or in recovery room afterward when they wake up?
7)How will Alex feel for the days he is in the hospital? I am wondering =
how quickly they get them up and around.
8) We have to hang around Cleveland for 4-5 days after Alex is =
discharged from the hospital for daily clinic visits for adjustments or =
whatever. Do you think that he'll feel like going on little jaunts like =
to the zoo, museum, etc., assuming that he's not too self-conscious =
(which he has never been before.)
9)Any other suggestions,comments,warnings, etc. are appreciated. We are =
excited that this will be over soon, but that doesn't erase the anxiety =
over the process. Thanks for listening. Amy Irvin

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<HTML>
<HEAD>

<META content=3Dtext/html;charset=3Diso-8859-1 =
http-equiv=3DContent-Type>
<META content=3D'"MSHTML 4.72.3110.7"' name=3DGENERATOR>
</HEAD>
<BODY bgColor=3D#ffffff>
<DIV><FONT size=3D2>These questions are for anyone out there who has had =

experience with the RED system of midface distraction. My son, Alex, =
will be=20
undergoing it on August 10th. We go for the preadmission testing this=20
Wednesday.</FONT></DIV>
<DIV><FONT size=3D2>1) How long does the surgery take?</FONT></DIV>
<DIV><FONT size=3D2>2) Was a blood transfusion required either during or =
after=20
surgery?</FONT></DIV>
<DIV><FONT size=3D2>3) How much post-op pain is involved realistically. =
Are they=20
able to use the special self-administering pain pumps with=20
children?</FONT></DIV>
<DIV><FONT size=3D2>4)Is it difficult for the person to eat with the RED =
device=20
on? Any survival suggestions are welcome!</FONT></DIV>
<DIV><FONT size=3D2>5)What about bathing with the device on? Is that a =
problem? I=20
assume that the device does not rust, but can it go into the=20
shower?</FONT></DIV>
<DIV><FONT size=3D2>6)Has anyone been permitted in the OR until their =
child is=20
asleep pre-op and/or in recovery room afterward when they wake =
up?</FONT></DIV>
<DIV><FONT size=3D2>7)How will Alex feel for the days he is in the =
hospital? I am=20
wondering how quickly they get them up and around.</FONT></DIV>
<DIV><FONT size=3D2>8) We have to hang around Cleveland for 4-5 days =
after Alex is=20
discharged from the hospital for daily clinic visits for adjustments or=20
whatever. Do you think that he'll feel like going on little jaunts like =
to the=20
zoo, museum, etc., assuming that he's not too self-conscious (which he =
has never=20
been before.)</FONT></DIV>
<DIV><FONT size=3D2>9)Any other suggestions,comments,warnings, etc. are=20
appreciated. We are excited that this will be over soon, but that =
doesn't erase=20
the anxiety over the process. Thanks for listening. Amy=20
Irvin</FONT></DIV></BODY></HTML>

------=_NextPart_000_0004_01BED7A9.84EFB760--
=========================================================================
Date:         Tue, 27 Jul 1999 17:21:37 +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: Blisters and ops
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"

>Evan had one a couple of months after surgery. It turned out to be a "stitch
>abscess" One of the absorbable sutures (monocryl, it looked like- he always
>"spits" vicryl from incisions) didn't absorb and caused the problem.

Oh Marianne, how could you possibly think the absorbable sutures don't absorb! Just ask any nurse/medico, of course they all reabsorb!

NOT !

Isn't it amazing how quickly the wound heals once the imaginery sutures are removed. :-)

Ann
NZ
=========================================================================
Date:         Tue, 27 Jul 1999 09:42:32 EDT
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              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
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From:         Yonstein@AOL.COM
Subject:      Re: Teeter, Billy
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Glad to hear Billy is home and the hand surgery went so well.

Sending wishes to Teeter that the fever is gone and you are feeling better.

Janine
=========================================================================
Date:         Tue, 27 Jul 1999 09:44:35 EDT
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              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
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From:         Yonstein@AOL.COM
Subject:      Re: Welcome Bill
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Welcome Bill and family. We are the Krebs family from New York, Brian,
Janine Nicholas and Emily, 2 years old with Apert. We, too, found Teeter's
page right after Emily's birth and thank God and Don for it every day.

Tell us more about your child and family.

Best wishes,

Janine Krebs
=========================================================================
Date:         Tue, 27 Jul 1999 09:48:23 EDT
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              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
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From:         Yonstein@AOL.COM
Subject:      Re: question about hearing
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Sheryl

Hello. I don't think I responded to your post. Welcome to the family and
good luck with your upcoming wedding plans. James and Beth sound like
wonderful people.

Best wishes,

Janine Krebs
New York
=========================================================================
Date:         Tue, 27 Jul 1999 10:00:27 EDT
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              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
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From:         Yonstein@AOL.COM
Subject:      Re: RED system
MIME-Version: 1.0
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Amy:

Hi. I don't have any experience with the RED system yet, but am sure in the
future it will be a consideration. Emily is 2. Will be thinking of you and
Alex in the upcoming two weeks.

Looking forward to the info also.

Best wishes,

Janine Krebs
=========================================================================
Date:         Tue, 27 Jul 1999 10:02:35 EDT
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              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
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From:         Yonstein@AOL.COM
Subject:      Re: Welcome Fuentes Family
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Welcome Julio and family. We are the Krebs family, Brian, Janine Nicholas
and Emily 2 years old with Aperts. I am sure you will find this group to be
as helpful and informative as we have.

Can't help you out with the Spanish, though.

Best wishes,

Janine
=========================================================================
Date:         Tue, 27 Jul 1999 10:03:24 EDT
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              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
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From:         Yonstein@AOL.COM
Subject:      Re: Picture of My Kids
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Laura:

Thanks for sharing the photos of your two children. They are adorable. How
old are they now?

Janine
New York
=========================================================================
Date:         Tue, 27 Jul 1999 10:05:13 EDT
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              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
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From:         Yonstein@AOL.COM
Subject:      Re: toes
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Hi all:

On the issue of toes, we, too, were told not to do anything with Emily's
toes. Her big toe is REALLY curved. Sometimes I wonder if that is causing
her pain when she walks. It's almost like she is lifting up that part of her
foot and walking.

So we will not be doing anything unless it is a required surgery.

Janine
=========================================================================
Date:         Tue, 27 Jul 1999 10:06:45 EDT
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              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
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From:         Yonstein@AOL.COM
Subject:      Re: Nick G
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I may be late on my well-wishes. But good luck to Nick and family on your
surgery. It's a big surgery and I am sure all is well. Will be sending
prayers your way.

Nothing like a little excitement right beforehand. Stay away from the money.

Best wishes,

Janine Krebs
=========================================================================
Date:         Tue, 27 Jul 1999 10:11:47 EDT
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
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From:         Yonstein@AOL.COM
Subject:      Re: Stuff
MIME-Version: 1.0
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Hello all:

As you can see from the messages, I have been out of the loop for a while.

The good news is Emily just celebrated her second birthday on the 26th. She
is doing remarkably well. Sometimes I am still surprised by it. I think
back to when the doctors in the hospital told us that her neurological
function would be poor and that they didn't know what she would be able to do.

As we all know, our kids can do just about anything they set their minds to.

Our house is under construction and we put a new bay window in the living
room. To update stories with our kids, the first day it went in I found
Emily perched up on the window sill. It's now her new favorite spot to sit.
When I tell her to get down she looks at me adorably and waves and says, Hi,
Mama.

Well, enough bragging about my little girl. If I missed welcoming anyone, my
apologies. If I missed anyone's upcoming surgeries or recoveries, my best
wishes to you.

Janine Krebs
=========================================================================
Date:         Tue, 27 Jul 1999 08:48:25 -0700
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
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From:         rreed <rreed@CABLEONE.NET>
Subject:      Happy Birthday Emily
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
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Hi Janine, A BIG Birthday wish to little Emily! Happy Bithday to you
Emily!Iam glad to hear that Emily is getting into mischief and acting like a
normal two year old. I always say that we Aperts can do anything that we set
our minds to do, and Emily is sure showing you.Have a great day! Take Care
Max
=========================================================================
Date:         Tue, 27 Jul 1999 11:56:19 EDT
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              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
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From:         Liz Saylan <LSaylan@AOL.COM>
Subject:      Re: Happy Birthday Emily
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
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Happy Birthday Emily!!!!!
   I agree we can do ANYTHING OUR HEARTS DESIRE!
   Liz Saylan
=========================================================================
Date:         Tue, 27 Jul 1999 12:25:21 -0400
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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:         Mechelle Holt <MOM-POOH-of-2@WEBTV.NET>
Subject:      Re: Stuff
In-Reply-To: Yonstein@AOL.COM's message of Tue, 27 Jul 1999 10:11:47 EDT
Content-Type: Text/Plain; Charset=US-ASCII
Content-Transfer-Encoding: 7Bit
MIME-Version: 1.0 (WebTV)

Happy Birthday Emily!
I can see her sitting in that window now! She is adorable! The hard
part is if she is anything like Courtney, she knows that she is the
apple of our eye! LOL!
Mechelle
=========================================================================
Date:         Tue, 27 Jul 1999 12:29:23 -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:         Mechelle Holt <MOM-POOH-of-2@WEBTV.NET>
Subject:      Re: RED system
In-Reply-To: Amy <AIRVIN@COLUMBUS.RR.COM>'s message of Mon, 26 Jul 1999
              20:57:49 -0400
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Content-Transfer-Encoding: 7Bit
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Amy,

We haven't had this proceedure done either, so I can't help you there,
but our prayers will be with you!
Best Wishes,
Mechelle
=========================================================================
Date:         Tue, 27 Jul 1999 12:39:21 -0400
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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:         Mechelle Holt <MOM-POOH-of-2@WEBTV.NET>
Subject:      Re: crab session - sorry
In-Reply-To: "J. G. Lindamood" <chanan8@JUNO.COM>'s message of Sat, 24 Jul
              1999 23:18:18 +0000
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MIME-Version: 1.0 (WebTV)

Hi Joanne!
Don't be sorry for the "crab session". That is what we are here for.
We all have bad days, and weeks. I know how it feels when everything
doesn't go the way it is suppose to! It is good that you are able to
express your feelings, and not keep it inside! Keep your chin up! It
has to get better! :)) If we don't struggle, we can't grow stronger! We
can always wish that the wand will bring a miracle!
Warmest Wishes,
Mechelle
=========================================================================
Date:         Tue, 27 Jul 1999 12:46:05 -0400
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
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              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Mechelle Holt <MOM-POOH-of-2@WEBTV.NET>
Subject:      Re: Thumbs, feet, and ear tubes
In-Reply-To: Howard & Ann <howrdnan@IHUG.CO.NZ>'s message of Sat, 24 Jul 1999
              17:25:16 +1200
Content-Type: Text/Plain; Charset=US-ASCII
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I have a foot-spa too! I slice real lemons, and lemon juice, to put in
the water. It is very refreshing, and soothing. I am not sure if it
would help the toe nails, but it adds to the relaxation of the soak!
Mechelle
=========================================================================
Date:         Tue, 27 Jul 1999 13:03:57 -0500
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Carol <tcgraves@BELLSOUTH.NET>
Subject:      Nicholas surgery
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We just got home from the hospital. Nicholas' surgery was last Thursday =
(RED/LeFort III).. all went well considering. He hasn't quite bounced =
back from this one like he has the previous 15 surgeries but will soon I =
am sure. Now we have 10 weeks in the device of extracting the mid face =
to go... this will not be east to keep him calm and easy going as he is =
soooooooooo ACTIVE !!! lol .
Thanks for your prayers we will need them.
Carol Graves

=20

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Amy,=20
We just got home and I am still going thru all the emails, but will be =
happy to help answer any questions I can about the RED System. =20
1) Nick's surgery lasted about 8 1/2 hours, I am sure this varies with =
each child and doctor.
2) Nick required 2 units of blood during the surgery.
3) Nick was kept on morophine as well as a sedative for abt 36 hours =
post op. They then switched him to Oxydene since he cant take Codeine =
and it seemed sufficient to relief the pain.
4) Eating has been the most difficult problem so far... he refused to =
eat anything which kept us in the hospital an extra day... not much =
help on this subject.. could use some advice myself..
5) The drs. assure me that Nick can bath and shower as normal with no =
problems.
6) We stayed with Nick in the pre-op and then walked them to the OR =
door.. we were allowed in the PICU immediately after surgery... they =
were very generous about visiting and they only time we weren't allowed =
was during shift changes.
7) Nick has been slower to 'bounce' back after this surgery than all =
others but the drs assure me this is normal for this proceedure...Nick =
was kept in PICU for 48 hours then moved to a room, he didnt get up and =
walk around til about 72 hours following surgery. =20
8) This is his 5th post surgery day and he still doesn't feel like =
doing much... his main problem is that he is still very weak which I am =
hoping will improve when we get the eating problem worked out... but =
then again every child is different and Alex may feel great and bounce =
back faster.

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<HTML><HEAD>
<META content=3D"text/html; charset=3Diso-8859-1" =
http-equiv=3DContent-Type>
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<STYLE></STYLE>
</HEAD>
<BODY bgColor=3D#ffffff>
<DIV><FONT size=3D2>
<DIV><FONT size=3D2>Amy, </FONT></DIV>
<DIV><FONT size=3D2>We just got home and I am still going thru all the =
emails, but=20
will be happy to help answer any questions I can about the RED =
System. =20
</FONT></DIV>
<DIV><FONT size=3D2>1)  Nick's surgery lasted about 8 1/2 hours, I =
am sure=20
this varies with each child and doctor.</FONT></DIV>
<DIV><FONT size=3D2>2)  Nick required 2 units of blood during the=20
surgery.</FONT></DIV>
<DIV><FONT size=3D2>3)  Nick was kept on morophine as well as a =
sedative for=20
abt 36 hours post op.  They then switched him to Oxydene since he =
cant take=20
Codeine and it seemed sufficient to relief the pain.</FONT></DIV>
<DIV><FONT size=3D2>4) Eating has been the most difficult problem so =
far... he=20
refused to eat anything which kept us in the hospital an extra =
day...  not=20
much help on this subject.. could use some advice myself..</FONT></DIV>
<DIV><FONT size=3D2>5)  The drs. assure me that Nick can bath and =
shower as=20
normal with no problems.</FONT></DIV>
<DIV><FONT size=3D2>6)  We stayed with Nick in the pre-op and then =
walked=20
them to the OR door.. we were allowed in the PICU immediately after =
surgery...=20
they were very generous about visiting and they only time we weren't =
allowed was=20
during shift changes.</FONT></DIV>
<DIV><FONT size=3D2>7)  Nick has been slower to 'bounce' back after =
this=20
surgery than all others but the drs assure me this is normal for this=20
proceedure...Nick was kept in PICU for 48 hours then moved to a room, he =
didnt=20
get up and walk around til about 72 hours following surgery.  =
</FONT></DIV>
<DIV><FONT size=3D2>8)  This is his 5th post surgery day and he =
still doesn't=20
feel like doing much... his main problem is that he is still very weak =
which I=20
am hoping will improve when we get the eating problem worked out... but =
then=20
again every child is different and Alex may feel great and bounce back=20
faster.</FONT></DIV></FONT></DIV></BODY></HTML>

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=========================================================================
Date:         Tue, 27 Jul 1999 20:31:26 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:         Marilyn Williams <Mbwill43@AOL.COM>
Subject:      Re: Stuff
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HAPPY BIRTHDAY TO EMILY HOPE YOU HAD A GREAT DAY!!!!!!!!!!!!!!!LOVE MARILYN
(CARLEE'S GRAM )
=========================================================================
Date:         Tue, 27 Jul 1999 22:31:37 -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:         Amy <AIRVIN@COLUMBUS.RR.COM>
Subject:      Re: RED System
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Carol, Thanks for the info. It really helps. Nick sounds like a brave =
little boy. Will he be able to go to school with the device on or have a =
tutor at home? Or have they told you that yet? I am curious. I am a =
little nervous of the possibility of it getting bumped! Hang in =
there-take comfort in the knowledge that you have the surgery over with =
and we still have to go through that part. For us, you are the =
trailblazers! That's great that you go to Dr. Sargent! Alex saw him when =
he was 3 years old when we went down there for a consult. We liked him =
but it is just too far to travel, especially when we now have a great =
doctor just 2 hours away at the Cleveland Clinic. Anyway, thanks again =
for answering my many questions so soon. Let me know about any other =
details that I may have overlooked. Take care and tell Nick that Alex =
thinkd it is really cool that someone else had this done about the same =
time that he is having it! Gotta go now and get alex to bed for the big =
day of preadmission testing tomorrow. Amy=20
    -----Original Message-----
    From: Carol <tcgraves@BELLSOUTH.NET>
    To: APERT@LISTSERV.AOL.COM <APERT@LISTSERV.AOL.COM>
    Date: Tuesday, July 27, 1999 1:57 PM
    Subject: RED System
   =20
   =20
    Amy,=20
    We just got home and I am still going thru all the emails, but will =
be happy to help answer any questions I can about the RED System. =20
    1) Nick's surgery lasted about 8 1/2 hours, I am sure this varies =
with each child and doctor.
    2) Nick required 2 units of blood during the surgery.
    3) Nick was kept on morophine as well as a sedative for abt 36 =
hours post op. They then switched him to Oxydene since he cant take =
Codeine and it seemed sufficient to relief the pain.
    4) Eating has been the most difficult problem so far... he refused =
to eat anything which kept us in the hospital an extra day... not much =
help on this subject.. could use some advice myself..
    5) The drs. assure me that Nick can bath and shower as normal with =
no problems.
    6) We stayed with Nick in the pre-op and then walked them to the OR =
door.. we were allowed in the PICU immediately after surgery... they =
were very generous about visiting and they only time we weren't allowed =
was during shift changes.
    7) Nick has been slower to 'bounce' back after this surgery than =
all others but the drs assure me this is normal for this =
proceedure...Nick was kept in PICU for 48 hours then moved to a room, he =
didnt get up and walk around til about 72 hours following surgery. =20
    8) This is his 5th post surgery day and he still doesn't feel like =
doing much... his main problem is that he is still very weak which I am =
hoping will improve when we get the eating problem worked out... but =
then again every child is different and Alex may feel great and bounce =
back faster.

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<HTML>
<HEAD>

</HEAD>
<BODY bgColor=3D#ffffff>
<DIV><FONT color=3D#000000 size=3D2>Carol, Thanks for the info. It =
really helps.=20
Nick sounds like a brave little boy. Will he be able to go to school =
with the=20
device on or have a tutor at home? Or have they told you that yet? I am =
curious.=20
I am a little nervous of the possibility of it getting bumped! Hang in=20
there-take comfort in the knowledge that you have the surgery over with =
and we=20
still have to go through that part. For us, you are the trailblazers! =
That's=20
great that you go to Dr. Sargent! Alex saw him when he was 3 years old =
when we=20
went down there for a consult. We liked him but it is just too far to =
travel,=20
especially when we now have a great doctor just 2 hours away at the =
Cleveland=20
Clinic. Anyway, thanks again for answering my many questions so soon. =
Let me=20
know about any other details that I may have overlooked. Take care and =
tell Nick=20
that Alex thinkd it is really cool that someone else had this done about =
the=20
same time that he is having it! Gotta go now and get alex to bed for the =
big day=20
of preadmission testing tomorrow. Amy </FONT></DIV>
<BLOCKQUOTE=20
style=3D"BORDER-LEFT: #000000 solid 2px; MARGIN-LEFT: 5px; PADDING-LEFT: =
5px">
    <DIV><FONT face=3DArial size=3D2><B>-----Original =
Message-----</B><BR><B>From:=20
    </B>Carol <<A=20
    =
href=3D"mailto:tcgraves@BELLSOUTH.NET">tcgraves@BELLSOUTH.NET</A>><BR>=
<B>To:=20
    </B><A =
href=3D"mailto:APERT@LISTSERV.AOL.COM">APERT@LISTSERV.AOL.COM</A>=20
    <<A=20
    =
href=3D"mailto:APERT@LISTSERV.AOL.COM">APERT@LISTSERV.AOL.COM</A>><BR>=
<B>Date:=20
    </B>Tuesday, July 27, 1999 1:57 PM<BR><B>Subject: </B>RED=20
    System<BR><BR></DIV></FONT>
    <DIV><FONT size=3D2>
    <DIV><FONT size=3D2>Amy, </FONT></DIV>
    <DIV><FONT size=3D2>We just got home and I am still going thru all =
the emails,=20
    but will be happy to help answer any questions I can about the RED=20
    System.  </FONT></DIV>
    <DIV><FONT size=3D2>1)  Nick's surgery lasted about 8 1/2 =
hours, I am=20
    sure this varies with each child and doctor.</FONT></DIV>
    <DIV><FONT size=3D2>2)  Nick required 2 units of blood during =
the=20
    surgery.</FONT></DIV>
    <DIV><FONT size=3D2>3)  Nick was kept on morophine as well as a =
sedative=20
    for abt 36 hours post op.  They then switched him to Oxydene =
since he=20
    cant take Codeine and it seemed sufficient to relief the =
pain.</FONT></DIV>
    <DIV><FONT size=3D2>4) Eating has been the most difficult problem so =
far... he=20
    refused to eat anything which kept us in the hospital an extra =
day... =20
    not much help on this subject.. could use some advice =
myself..</FONT></DIV>
    <DIV><FONT size=3D2>5)  The drs. assure me that Nick can bath =
and shower=20
    as normal with no problems.</FONT></DIV>
    <DIV><FONT size=3D2>6)  We stayed with Nick in the pre-op and =
then walked=20
    them to the OR door.. we were allowed in the PICU immediately after=20
    surgery... they were very generous about visiting and they only time =
we=20
    weren't allowed was during shift changes.</FONT></DIV>
    <DIV><FONT size=3D2>7)  Nick has been slower to 'bounce' back =
after this=20
    surgery than all others but the drs assure me this is normal for =
this=20
    proceedure...Nick was kept in PICU for 48 hours then moved to a =
room, he=20
    didnt get up and walk around til about 72 hours following =
surgery. =20
    </FONT></DIV>
    <DIV><FONT size=3D2>8)  This is his 5th post surgery day and he =
still=20
    doesn't feel like doing much... his main problem is that he is still =
very=20
    weak which I am hoping will improve when we get the eating problem =
worked=20
    out... but then again every child is different and Alex may feel =
great and=20
    bounce back =
faster.</FONT></DIV></FONT></DIV></BLOCKQUOTE></BODY></HTML>

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=========================================================================
Date:         Tue, 27 Jul 1999 23:52:23 EDT
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Lisa Guyette <LAM1126@AOL.COM>
Subject:      Late thanks for Pictures
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I was just putting photos into Samantha's scrapbook and I realized that I
didn't ad really wanted to thank the following families for their wonderful
pictures Of CourtneyJennerjohn,Nick Amerman and Roxie Chan. I put them in
her book with a reminder post it to thank you all and then didn't get back to
it until today.

They are all so cute and I love to hear about all the things they do.

If you didn't get pictures of Samantha during my two batch send outs, more
are going out this week.

Thanks Again, Lisa Guyette
=========================================================================
Date:         Wed, 28 Jul 1999 01:45:41 -0600
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         baconsmith <bluenose@TELUSPLANET.NET>
Subject:      Re: Happy things ... and other things
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"

Okey dokey, this one really got me. We used to sing sweet potatoes etc
(what you call yams) to the tune of my darlin Clementine. You'll see it on
Peach's homepage on the widesmiles.org/gallery site.

Lisa I think it is absolutely appropriate to share those happy things.
Life has it all and it all should be shared. Samantha must have had you
just grinning when she sang to you. I know I would be smiling at that. And
it also brought back some of my memories of when the kids were that age.
Don't you just love it?!

On another note: holding kids for procedures. Fortunately Evajessie is
older now (6yo) and I will hold her but I will NOT hold her DOWN. Nor will
I allow anyone else to restrain her. If she cannot come to the table with
mommy's help, then it just won't be done to her. These procedrues are yucky
at the best of times; I will not have her experience turned into what ( to
me) amounts to abuse. So we work on all our other coping methods, and they
work for us. The best part is that EvaJessie (Peach) has learned that she
can handle it. She knows she's a pretty strong girl and she can talk
herself (with mom's help) through most of the anxiety part.

Judy had it right when she said holding, cuddling, holding a hand, stroking
a forehead, talking softly and reassuringly. Those are all things that we
will do, and we have a bag full of other tricks too (most children's
hospitals know this stuff).

I recently fired our ped dentist because he physically leaned on my son's
chest with the needle only inches away from the child's face while the boy
was trying to catch his breath and prepare himself mentally for the
procedure. My son was crying and trying to get up and this yahoo (hard to
beleive his specialty is children) leaned on him and told him that if he
didn't settle down that mom would have to leave. Guess what? Not bloody
likely. I was so incensed at this man. So I shouted to let my son up and
let him catch his breath. Afterward, when I spoke to the dentist about
this, he said the reason is because we were late for the appointment and he
didn't have time to show and prepare my son. He runs a tight practice with
several people working for him. His throughput was obviously more important
than my child's well being. We have not gone back. And never will. And
this is the man who came recommended by our craniofacial clinic locally. He
ought to be shot and pi**ed on, in my humble opinion!

Pat in Calgary

>I'll start:
>
>After two months of singing a dum YAM song I made up when Samantha eats sweet
>potatoes, yesterday she sang it with me. It was the first time she had
>actually interacted with us verbally. She would hum the song and then look
>at me for my reaction and then give a big smile.
>
>Love, Lisa Guyette/ mother of Samantha 8 months with Apert Syndrome
>
=========================================================================
Date:         Wed, 28 Jul 1999 01:45:49 -0600
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         baconsmith <bluenose@TELUSPLANET.NET>
Subject:      Re: Blisters and ops
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"

Peach also had a 'dissolving suture' that didn't. A couple of weeks
following her soft tissue repair, it poked out through her skin and caused
green pussy goop but was quickly handled with a round of the miracle
compound of the week.

Pat in Calgary

>>Evan had one a couple of months after surgery. It turned out to be a "stitch
>>abscess" One of the absorbable sutures (monocryl, it looked like- he always
>>"spits" vicryl from incisions) didn't absorb and caused the problem.
>
>Oh Marianne, how could you possibly think the absorbable sutures don't
absorb! Just ask any nurse/medico, of course they all reabsorb!
>
>NOT !
>
>Isn't it amazing how quickly the wound heals once the imaginery sutures are
removed. :-)
>
>Ann
>NZ
>
=========================================================================
Date:         Wed, 28 Jul 1999 22:31:29 +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: Nevus
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"

>What is the nevus?
>Alice in Orlando, FL.

Alice, according to my Dorland's medical dictionary a nevus is "a small, flat, elevated or pedunculated tumor of the skin, pigmented or nonpigmented, and with or without hair growth, characterized by a specific type of cell".

On Amy it is a raised area of hairless-crusty-shiny-scaley skin that could be mistaken for a bad patch of eczema by someone who didn't know better. (like me!)

Ann
=========================================================================
Date:         Wed, 28 Jul 1999 22:31:31 +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: Thumbs, feet, and ear tubes
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"

Hey Mechelle what a good idea - it would smell lovely and probably has disinfecting properties as well. Hmm, maybe a dash of gin as well?

Thanks for the suggestion.

Ann

At 12:46 PM 27/07/99 -0400, you wrote:
>I have a foot-spa too! I slice real lemons, and lemon juice, to put in
>the water. It is very refreshing, and soothing. I am not sure if it
>would help the toe nails, but it adds to the relaxation of the soak!
>Mechelle
>
>
=========================================================================
Date:         Wed, 28 Jul 1999 08:02:48 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:         Bill Wetherow <BillWeth@AOL.COM>
Subject:      Re: APERT Digest - 25 Jul 1999 to 26 Jul 1999 (#1999-205)
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
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Dear Amy,

I don't know anything about the RED system. About operations in general,
though:
Operations of this nature usually do require transfusions. Blood can be
donated through blood banks specifically for individuals from specific donors
if the blood type matches. One time I had to donate twice within the period
where you are only allowed to donate once because the first time the blood
bank screwed up and lost my blood. I had to use a different blood bank for
that. Your surgeon can fill out a designated donor slip for the blood bank.
Different surgeries affected my daughter differently. Most mafor surgeries
left her tired and/or cranky for a few days.Let me know more about the RED
system. Good luck to all of you .
Bill
=========================================================================
Date:         Wed, 28 Jul 1999 09:39:36 +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: Happy things ... and other things
In-Reply-To: <19990728074542Z41463-26676+1@smtp1.telusplanet.net>
MIME-Version: 1.0
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> this is the man who came recommended by our craniofacial clinic locally. He
> ought to be shot and pi**ed on, in my humble opinion!
>

Better idea, find out what professional organization to report him
to. They might not do much with ONE complaint, but numbers add up.
Unfortunately, far too many pediatric dentists insist that parents
leave the room. NO WAY!!! This is a huge red flag. If the dentist
can't do it with you in the room, find another dentist.

I don't take my kids to a pediatric dentist, but my dentist loves
kids. He's filled my teeth with a kid sitting on my lap (sitter
bailed on me at the last minute) and done first exam on my kids with
them sitting on my lap. They all love him.

Judy
=========================================================================
Date:         Wed, 28 Jul 1999 10:12:59 EDT
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Gail Montes <Gailsvm@AOL.COM>
Subject:      Re: Happy things ... and other things
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit

Hi, I usually lurk on this listserve, but had to add my two cents on
pediatric dentists!
My daughter, Rachel, has a wonderful pediatric dentist that asks (but doesn't
insist) that parents wait in the waiting room. From my experience, Rachel
(age 5 tomorrow) has done much better without me in the room with her. When
I have been with her (only at the dentist) she cries and refuses to
cooperate. She just had a visit and she didn'(t cry at all and was happy.
I was shocked at that! (I was also pretty proud of her.) After all, I am
with her for every other doctor appointment, preop visits, when she goes in
the O.R., when she's in ICU and I stay with her in her room when she's
hospitalized! I guess it's like everything else we all go through...go with
your gut!

Just my two cents! Gail (in Massachusetts)
=========================================================================
Date:         Wed, 28 Jul 1999 12:13:10 -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:         Mechelle Holt <MOM-POOH-of-2@WEBTV.NET>
Subject:      Re: Happy things ... and other things
In-Reply-To: Gail Montes <Gailsvm@AOL.COM>'s message of Wed, 28 Jul 1999
              10:12:59 EDT
Content-Type: Text/Plain; Charset=US-ASCII
Content-Transfer-Encoding: 7Bit
MIME-Version: 1.0 (WebTV)

HAPPY BIRTHDAY Rachel!
I hope you have a wonderful day!
Mechelle
=========================================================================
Date:         Wed, 28 Jul 1999 15:47:49 -0400
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
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From:         ROBIN L HILL <CARMENRAE@PRODIGY.NET>
Subject:      Carmen is having surgery
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Just wanted to let you all know that Carmen will be having hand surgery
tomorrow. She will be getting index fingers on both hands (I have warned
all our friends not to be offended if she points at them! LOL). I don't
think I would be able to discipline her for pointing! Anyway, this surgery
should be interesting because she is much more active now than when she had
her last surgery. Please keep her (and us!) in your thoughts and prayers.
We'll let you know how things go sometime tomorrow.

Robin Hill
=========================================================================
Date:         Wed, 28 Jul 1999 13:37:57 -0700
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              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
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From:         rreed <rreed@CABLEONE.NET>
Subject:      Prayers for Carmenrae
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Robin and Mike, Carmenrae will be in my thoughts and prayers, and so will
you and Mike I know this is a hard time for you guys, all surgerys are, but
little Carmen is a go getter and she'll make it just fine. She can point to
me all she wants next year at Mrytle beach! Take care. Max from hot
Modesto,Calif.
=========================================================================
Date:         Wed, 28 Jul 1999 13:59:14 -0700
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              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
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From:         "Scott Pengelly, Ph.D." <scottp@EUGENEEZ.NET>
Subject:      Re: Carmen is having surgery
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Hello, Robin:
Scott Pengelly here in Eugene, Oregon. All the best. All of you are in my
prayers.
Scott Pengelly

ROBIN L HILL wrote:

> Just wanted to let you all know that Carmen will be having hand surgery
> tomorrow. She will be getting index fingers on both hands (I have warned
> all our friends not to be offended if she points at them! LOL). I don't
> think I would be able to discipline her for pointing! Anyway, this surgery
> should be interesting because she is much more active now than when she had
> her last surgery. Please keep her (and us!) in your thoughts and prayers.
> We'll let you know how things go sometime tomorrow.
>
> Robin Hill
=========================================================================
Date:         Wed, 28 Jul 1999 14:03:36 -0700
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
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From:         Richard Tait <rjrtait@MARS.ARK.COM>
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Sorry that I don't write much, but I have a question for everyone. I hope
that you can all help me with this.

Have any of you heard or had experience with Apert syndrome children having
ADHD (Attention Deficit with Hyperactivity Disorder).

I think that we may have it, and we want to do some researching before we
are into the school system.

Thanks in advance,
Rene and family
=========================================================================
Date:         Wed, 28 Jul 1999 17:12:37 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