log9802d

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Date:         Sun, 22 Feb 1998 07:30:36 EST
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
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From:         Tony & Sandy Deakins <TDeakins1@AOL.COM>
Subject:      Re: sweating; how to deal with it in Florida
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The feet are the most vulnerable to rash and infection caused by sweating. As
I noted previously, it seems that is more common than not for an Apert's child
to be allergic to their own sweat, which tends to aggravate an already
troublesome problem.

Casey uses a deordant stick on her feet before putting socks on. Around the
house, she is encouraged to go barefoot or wear sandals. Cotton socks work
way better than nylon. In fact, nylon are almost impossible during the summer
months. Beyond that, we apply a zinc based cream at the first sign of
irritation. All in all, there is no magic remedy; just a lot of paying
attention, largely on Casey's mother's part.
Tony
=========================================================================
Date:         Sun, 22 Feb 1998 00:15:52 EST
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From:         Lynn Thornquist <Thornq@AOL.COM>
Subject:      Re: Joints
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Ann,

The only thing I know about joints is what Dr. Upton has told me. I remember
asking him "why with all the medical science, couldn't he put joints in my
sons fingers"? He responded by saying, "I can put joints in fingers, and I
can transplant nerves, but unfortunately, I cannot transplant tendons and
ligaments which make the joints strong. Otherwise the joints would be weak
and floppy." Dr. Upton is Andrew's plastic surgeon for his hands and feet.
That is all I have ever heard about joints. If you find out anything more,
please let me know because I am very interested in eventually (hopefully)
giving Andrew joints. Maybe it won't happen for ten to twelve more years, but
it is better than never.

Lynn Thornquist
(Holliston, MA)
=========================================================================
Date:         Sun, 22 Feb 1998 07:59:35 EST
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              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
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From:         Diane Youngblood <CoH1862@AOL.COM>
Subject:      Re: welcome
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Glad to be here. Can't wait to see you.
     diane
=========================================================================
Date:         Sun, 22 Feb 1998 09:37:45 EST
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From:         Jennifer Graham <Jenngram@AOL.COM>
Subject:      Re: Trying to stay on top
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I ditto Anns position, as sometimes we have questions that we don't post to
the group..either we haven't reached that stage yet or maybe think no one else
has the same problem...so smoetimes by reading others responses we do find wht
we need presently or perhaps something of use in the future.

And I too, like Ann, am trying to train myeslf to send personal messages if I
think no one else will care!!

Jenn (Tampa/St. Pete)
=========================================================================
Date:         Sun, 22 Feb 1998 09:49:41 EST
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From:         Jennifer Graham <Jenngram@AOL.COM>
Subject:      Re: Johnathon
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Good luck to Johnathon os his upcoming surgery!! Another one down!!!!!

Jenn
=========================================================================
Date:         Sun, 22 Feb 1998 10:00:47 EST
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From:         Jennifer Graham <Jenngram@AOL.COM>
Subject:      Re: An Update
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Oh Marjorie, I don't think anything could be said to ease you pain these days.
I hope and pray for the answeres to the questions ya'll are seeking..And I
doubt if any mother could make thses choices without leaning towards her heart
as opposed to doctors opinions. Know that whatever you decide is the best
choice for your family. We continue to pray for BJ and the rest of you.

Jenn (Tampa/St. Pete)
=========================================================================
Date:         Sun, 22 Feb 1998 12:43:25 EST
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From:         Andrea Gartner <LUVS2WRTE@AOL.COM>
Subject:      Re: sweating; how to deal with it in Florida
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I agree.. Nylon socks are out of the question for me too. I also stick to
cotton clothing, and don't wear any thing with polyester/nylon. '

-Andrea (Cape Coral, FL)
=========================================================================
Date:         Sun, 22 Feb 1998 15:15:32 EST
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From:         Gaylann Hicks <Gaylann1@AOL.COM>
Subject:      To Resa
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Hi Resa,
We have the same impression as you do about the medical field. We think some
doctors have an aggressive attitude. These web sites are advertising. I
guess this is something we will have to get used to. Plastic Surgeons really
have a big ego! Sonya and Bill went through two grueling days of pre-op
....Bill went to sleep during one apointment and Sonya another. They were
exhausted. Blake is doing great. Went back to preschool Thursday but the
stitches are still in the eyes.

I wish you well with your decisions. It is a difficult time to go through.

Gaylann, Blake's Grandmother
Cordova, TN
=========================================================================
Date:         Mon, 23 Feb 1998 13:56:16 +1300
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From:         Howard & Ann <howrdnan@IHUG.CO.NZ>
Subject:      Re: Joints
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Kia Ora

Thanks for your input Lynn. Sounds logical doesn't it.

>The only thing I know about joints is what Dr. Upton has told me. I remember
>asking him "why with all the medical science, couldn't he put joints in my
>sons fingers"? He responded by saying, "I can put joints in fingers, and I
>can transplant nerves, but unfortunately, I cannot transplant tendons and
>ligaments which make the joints strong. Otherwise the joints would be weak
>and floppy."

I went back to the web site for Advanced Tissue Sciences and printed out their info to avoid the awkwardness of reading it, and bearing Dr Upton's comments in mind I find the following quotes of interest:

Under "Articular Cartilage": "Articular (joint) cartilage covers the opposing surfaces of all moving joints in the body. Even small defects in the articular cartilage can cause pain and restriction of joint motion. These defects are believed to increase the probability of degenerative cartilage problems, such as arthritis, later in life. .... Tissue engineered articular cartilage could provide a significant opportunity to treat patients...."

Under "Cardiovascular Products": "Through the use of its tissue engineering technology, Advanced Tissue Sciences is working on developing blood vessels and heart valves which will grow and repair normally."

Under "Advantages of Bioengineered Tissue": "By using the body's own cells to produce bioengineered tissues and organs that function like their natural counterparts, tissue engineering may offer a better solution to the repair and reconstruction of damaged tissue and organs."

What I find interesting about this last section is that they list (in the following order) as the advantages "Lower total health care costs", "Availability", "Ease of use", "Reduced risk of disease transmission". There is no mention of the potential and absolutely HUGE benefit to the patient of having tissue and organs repaired more effectively and allowing them to maintain some semblance of a "normal" lifestyle. Imagine what they could do for the benefit of our children!

It looks to me that if they can create articular cartilage and blood vessels by tissue engineering then it is only a matter of time before they will be able to create the tendons and ligaments that Dr Upton needs. Maybe there will be a time in the future when the surgeons will be able to insert stable and effective joints into the hands of our children when they separate the fingers, and those fingers will grow as our children grow. What an exciting vision!

Maybe we need to let this company know about our children and what they could do for them.

Cheers,
Ann
NZ
=========================================================================
Date:         Sun, 22 Feb 1998 21:01:53 -0500
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From:         Jack and Raquel <jara1@BELLSOUTH.NET>
Subject:      South Florida Family??
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Hello everyone,

We just wanted to know if anyone lived in South Florida because we would
love to meet and share ideas/thoughts.

Jack & Raquel
=========================================================================
Date:         Sun, 22 Feb 1998 23:32:40 EST
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              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
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From:         Lynn Thornquist <Thornq@AOL.COM>
Subject:      Re: Joints
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Ann,

Dr. Upton is working on those transplants now. I hate to say this, but he is
testing it on animals. I don't like to think about it. All we can do is pray
for the medical technology.

Talk to you later.

Lynn
(Holliston, MA)
=========================================================================
Date:         Sun, 22 Feb 1998 22:20:54 -0800
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From:         Jose sanchez <juliuscsr@EARTHLINK.NET>
Organization: none
Subject:      Re: Visit with Dr. Salyer
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Hi Resa,                                                                        Me myself I consulted with Dr. marsh and I'm in
California, In california he is known as one of the best Craniofacial
specialists , Dr. Marsh felt comfortable reffering me to Dr.Robert
Hardesty which was trained by him.Dr hardesty is about an hour from me
and he is at loma Linda university Medical center.                                                                                                                      My
first series of team approach surgeries was on Feb. 12 , they are
re-doing all previous reconstruction due to poor planning or Doctors not
knowing what they were doing.                                                                                                                   If you want to read more
about my medical case and why I'm here you can by going to
Http://home.earthlink.net/~fgsw                                                                                                 Chip Sanchez
=========================================================================
Date:         Mon, 23 Feb 1998 20:31:23 +1300
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From:         Howard & Ann <howrdnan@IHUG.CO.NZ>
Subject:      Re: Joints
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Hi Lynn

>Dr. Upton is working on those transplants now. I hate to say this, but he is
>testing it on animals. I don't like to think about it. All we can do is pray
>for the medical technology.

It's a tough one if you happen to like animals isn't it. But I know who I would go in and bat for if it came to a choice of the animal or Amy! It probably helps to know that the research will benefit animals as well, because you can be sure vets will use the techniques to help animals that are loved enough by their owners or are considered valuable.

Do let us know if you hear anything helpful from Dr Upton won't you.

Cheers,
Ann
=========================================================================
Date:         Mon, 23 Feb 1998 14:15:47 -0800
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From:         Laurie Ann Bailey <jkb@ELPASO.NET>
Subject:      Re: Pregnant
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Carol Hamzsak wrote:
>
> Hello everybody
>
> Well I have just found out that I am pregnant and am expecting in
> October. Im very excited but also very very scared. I want to think
> positive through this.
> Hello everybody! Laurie Bailey here.

Just wanted to let you all know that I too am expecting our second child.
Our first is Jacob (21 months old). You can find his story on Teeter's
Page. We are due tomorrow, February 24. Just went to the doctor, and she
says we need to start thinking about a repeat c-section because nothing
is happening. I really wanted to have the baby the other way, but I'm
getting tired of waiting.

In the beginning of my pregnancy, we had higher level ultrasounds and
also an amniocentesis. When Jacob was born, my husband's, myself's, and
Jacob's blood were sent to Dr. Jabs at John's Hopkins Research Facility
to see what mutation Jacob has. At the time of the amnio, half of the
sample was kept at St. Francis in Peoria, IL and the other half went to
Dr. Jabs to be tested against Jake's previous sample. We were told that
it was because of Jake's previous sample that we could even do this kind
of testing because they have not yet developed a test for every
pregnancy. All tests came back normal. The fetus does not have the same
mutation that Jake has. The other mutation could not be tested for
because there wasn't a DNA sample to match to for it. There is a very
slim chance that the fetus has the other mutation but, as we all know,
the risk is as small as us having it happen in the first place.

For us, it was a weight lifted from our minds. Not everyone would feel
the same way. I would do the amnio all over again to set my mind at ease.
It was almost like my husband and I couldn't bond with the baby until we
had the tests done. I knew I still loved it as much as I love Jacob, but
until we were at ease, we didn't really get excited about it.

Well, enough ramblings for now. We will keep you all posted as far as the
big day is concerned.

The Baileys
Laurie, Kevin and Jacob
jkb@elpaso.net
=========================================================================
Date:         Mon, 23 Feb 1998 12:16:27 -0500
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From:         Don Sears <dsears@SCRS.STATE.SC.US>
Subject:      BJ's Page
MIME-Version: 1.0
Content-Type: text/plain

BJ's Page is now available.
=========================================================================
Date:         Mon, 23 Feb 1998 12:47:40 EST
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From:         Jennifer Graham <Jenngram@AOL.COM>
Subject:      Re: flying
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In a message dated 98-02-23 08:02:13 EST, you write:

<<
>>
Morning everyone..I wanted to ask ya'll if anyone has had any problems with
flying and the ear structure and ear infections associated with flight. I know
with non-Apert children it can be an issue so I wanted to know if anything
unusal was told to ya'll, or any unusual experiences. We may be planning our
first flight and I either want to be prepared or perhaps drive instead. Thanks
in advance..

Jenn(Tampa/St. Pete..barely escaping the tornadic rath of El Nino)
=========================================================================
Date:         Mon, 23 Feb 1998 18:20:16 EST
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From:         Jennifer Graham <Jenngram@AOL.COM>
Subject:      Re: Pregnant
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Laurie,

Congratulations and good luck on the big day. We'll keep you in our thoughts
and prayers these next few weeks. Get some rest..as you probablly remember
those little guys and girls are quite good at kepping mom and dad sleep
deprived!!!!!

Jenn (Tampa/St. Pete)
=========================================================================
Date:         Mon, 23 Feb 1998 19:50:43 EST
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From:         "<George Siebert>" <GSieb91515@AOL.COM>
Subject:      Re: Johnathon
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Hi all,

Jonathan is home from his surgery earlier today to release his index finger.
He did very well and the surgeon is extemely pleased with what they were able
to accomplish. They also increased his web space at the thumb and
straightened it a bit. Jonathan had a slight fever but was able to come home
anyway and he is already very agitated at this big blue thing on his hand/arm.
I wonder how long it will take him this time to get out of the bandages. Last
time it was off the second day. His surgeon doesn't use a hard cast because
he likes to check and make sure the blood supply looks good and that no
bacteria forms. He also didn't do the pinkie and index finger in one surgery
because of the complexity of Jonathan's fingers. His bones were all partially
fused and he prefers not to keep the little guys under anesthesia for too
long. This one finger was almost 4 hrs by itself. Also to decrease the risks
of infection. I know it's more surgeries this way but Jonathan tends to
recover very well from the anesthesia and doesn't have any unusual breathing
problems. We can't wait to see his new finger! Hope all is well for all the
other recuperating guys and gals.

Laura,

You spoke of the "other mutation" (other than Aperts). What did you mean?
So glad to hear everything looks A-ok for the little one to be. Good luck!

Brenda
Houston
=========================================================================
Date:         Mon, 23 Feb 1998 20:30:29 -0500
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From:         Mark Smith <dsprado@PENN.COM>
Subject:      Re: Flying
MIME-Version: 1.0
Content-Type: multipart/alternative;
              boundary="----=_NextPart_000_0010_01BD4099.E1DA5C80"

This is a multi-part message in MIME format.

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charset="iso-8859-1"
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Kay has been on a couple of flights and she has never had any noticable =
problems. If she did, she sure didnn't let us know in any way, i.e., =
crying, fussy, etc.

------=_NextPart_000_0010_01BD4099.E1DA5C80
Content-Type: text/html;
charset="iso-8859-1"
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<!DOCTYPE HTML PUBLIC "-//W3C//DTD W3 HTML//EN">
<HTML>
<HEAD>

<META content=3Dtext/html;charset=3Diso-8859-1 =
http-equiv=3DContent-Type>
<META content=3D'"MSHTML 4.72.2106.6"' name=3DGENERATOR>
</HEAD>
<BODY bgColor=3D#ffffff>
<DIV><FONT color=3D#000000>Kay has been on a couple of flights and she =
has never=20
had any noticable problems.  If she did, she sure didnn't let us =
know in=20
any way, i.e., crying, fussy, etc.</FONT></DIV></BODY></HTML>

------=_NextPart_000_0010_01BD4099.E1DA5C80--
=========================================================================
Date:         Mon, 23 Feb 1998 18:27:38 EST
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From:         Jennifer Graham <Jenngram@AOL.COM>
Subject:      Re: BJs page
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I just wanted to say how moving BJs page is, and that its nice to put a face
with the little boy we have all grown to love. We continue to pray for the
Harmon family.

Jenn (Tampa/St. Pete)
=========================================================================
Date:         Mon, 23 Feb 1998 20:56:34 EST
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From:         Gaylann Hicks <Gaylann1@AOL.COM>
Subject:      FLYING AND JONATHAN
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Hi Jenn, Blake has been on a couple of flights also. He goes to sleep!!

Hi Brenda, So glad your home and Jonathan did well. Every surgery is an
experience we could do without. Seem as though you are doing great. Good
luck with the recovery.

Gaylann, Blake's Grandmother
Tennessee
=========================================================================
Date:         Tue, 24 Feb 1998 19:20:04 -0800
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From:         Robin MacDonald <macdonal@GOLDEN.NET>
Subject:      school books, ciriculum
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Here's an idea as a result of the recent discussion about a sci-fi book
in school. It wouldn't be a bad idea to ask our local schools to put
books like that, or similar books such as that, in early grades so that
teachers could have the opportunity of shaping young minds in regards to
differences.

It seems to me that if we "taught" people about differences instead of
just learning about them as we go through life, it may be easier to
shape the opinions of children. If these young children could learn that
a physical, religous, mental, or racial difference was acceptable, it
may just affect their attitudes later in life.

You wouldn't be able to change everyone's attitudes, but you might just
shape enough to make a difference in your child's class or school.

Does anyone know of any children's books that address the topic of
differences?

Robin
=========================================================================
Date:         Wed, 25 Feb 1998 14:01:57 +1300
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From:         Howard & Ann <howrdnan@IHUG.CO.NZ>
Subject:      Re: school books, ciriculum
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We have a couple of books for younger children about being different which are quite delightful. One is about a rabbit with long floppy ears - can't remember the name unfortunately and I think it is at our holiday place - Amy has taken little interest in that one. The other is "The Mouse with the Too-Long Tail" by Bani McSpedden, Illustrations by Greg McAlpine, pub. Pan Macmillan Australia 1991 - she quite likes it.

I have heard of a book that depicts children with disabilities playing together which includes a child with Apert Syndrome. We considered it but decided we would rather have a book depicting the child with Apert Syndrome playing with "regular" children and demonstrating inclusion, rather than excluding the whole lot. It may look better than it sounds, we haven't seen it.

Nothing yet for the older children as Amy is not quite 7 years old. TWO days to go and she is getting excited.

So I will be interested to hear of any books that would be appropriate for 7yrs and upwards.

Ann
NZ

PS Have been concerned about a boy in Amy's class who appeared to be getting more and more "in her face" with his negative behaviour. Found out today he does it to everyone. Thank goodness I have finally learned to check these things out before taking them personally!! Now I can reassure Amy it actually has nothing to do with her.
=========================================================================
Date:         Wed, 25 Feb 1998 14:08:23 +1300
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From:         Howard & Ann <howrdnan@IHUG.CO.NZ>
Subject:      Re: school books, ciriculum
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Nearly forgot this one. Again for younger children as a "read-to" but for 7yrs+ as a "read-alone". Not one about differences, but about becoming what you believe. "Cowardly Clyde" by Bill Peet, pub Andre Deutsch London 1980 (originally published by Houghton Mifflin Company in the USA). Clyde was a big war-house who was a hopeless coward and pretended to be brave. The story tells how he overcame his fear by forgetting about it at a critical moment, realising he was actually brave after all, and learning to have faith in himself. Delightful story.

Ann
NZ
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Date:         Tue, 24 Feb 1998 20:34:54 +0000
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From:         "J. G. Lindamood" <chanan8@JUNO.COM>

Hello!

I spent the eveing in the library, borrowing their internet services. I
was touched by BJ's page and the pictures! Wow! What a remarkable boy!

My prayers and love continue to flow toward Texas.

Joanne, in Ohio

_____________________________________________________________________
You don't need to buy Internet access to use free Internet e-mail.
Get completely free e-mail from Juno at http://www.juno.com
Or call Juno at (800) 654-JUNO [654-5866]
=========================================================================
Date:         Tue, 24 Feb 1998 20:43:33 EST
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Frank & Annette Contrino <contrino@BUFFNET.NET>
Subject:      Re: Trying to stay on top
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"

People replied to my message about limiting responses as though I am asking
folks not to share information which may be of importance. This is, by no
means, what I was suggesting. What I recommended is that we not post
responses to the server which are only relevent to the original poster and
the replier. Below are examples of what I'm talking about. I am NOT trying
to single anyone out (my apologies to the Sanchez family for using replies
to your message as an example, but it's a thread I just got done reading).
This is just an example of the types of replies which (I feel) are only
important to the original poster and the replier. One message generates
many replies, which we all have to deal with. Just hitting reply may be
easy for the replier, but remember that each message is received by 30, 40,
50, or however many people subscribe to this listserver. They're good
messages to show your support for others but the intended audience is only one.

Frank Contrino
contrino@calspan.com

---------------reply -------------------------------
Congratulation to AJ on this major step. Now there will be no stopping him!!!
We are so happy for him..and ya'll!!!

----------------- reply ------------------------
Congratulations to you and to A.J. That is great news. Our kids truly are
special.

-------------------- reply ------------------------
I am really happy to hear about AJ's good news. That is really great!!!! And
you are right, our kids are special little ones. Lots of love and luck to
your family from ours.

------------------- reply ---------------------------
Way to go AJ. Congratulations! We haven't had to endure the trach but can
only imagine what a relief it must be. We are so happy for all of you.

------------------ reply --------------------------
that is too cute and too true!!!!

------------------ reply --------------------------
What a great poem, and how true!!!!!!

------------------ reply --------------------------
Glad to hear that Billy is home. Hope he is doing well.
=========================================================================
Date:         Tue, 24 Feb 1998 20:29:09 -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:         Judy Amerman <jamerman@UTI.COM>
Subject:      hurt feelings
MIME-Version: 1.0
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Nidk is very happy child with a great disposition. He is in second grade.
For the last few weeks when he comes home from school we talk about his
day. Since the weather has been decent for the state of Illinios, the kids
have been going outside for recess.
So when we are talking about his day at school; I ask him what did you do
at recess.
HIs responses have been "Oh I just walked around" or I played with a ball.
At that point I sometimes ask.Well who did you play with. He'll say "I
played by myself. Nobody wanted to play with me."
Do bear in mind though that Nick will not always initiate joing other kids.
I think he thinks that they always have to come to him. Which does't happen
often.
A few years ago I had him in little league, but grasping the bat was a
challenge for him.
A friend of mine was here a few days ago and spotted Nick outside playing
with a soccer ball. She said that he handled the ball quite well, so I
think I will look into getting him in soccer.
He is also in cub scouts and just loves it but I don't see any forming
friendships there either.
Does anyone have any great ideas how I can help Nick with some more
socialization skills?
The only other child his age in the neighborhood is a boy a year younger
than him. They play together frequently but lately there has been a bad
sharing problem with both of them.and or one wants to do one thing and the
other something else.
I just hate to think of him getting his feelings hurt because he is
different and him losing that sunny disposition and smiling face.
I hope I don't sound like a mother hen, but I am a little concerned
Thanks for your input

Judy amerman
=========================================================================
Date:         Tue, 24 Feb 1998 23:33:36 GMT
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:      mixups
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"

When billy was having his cranial surgery this month he was suppose to get
tubes in his ears also.The ent was going to go in during the surgery.This
was all set up by the nurse in the ent's office. well, after the surgery was
over and the dr's were telling us what was done we asked about the tubes
and the dr' said that the tubes were not done because no one came in to do
them. Anyway now he has to get them done . We just wanted to bring this up
because we want others to know possibley other who are having surgeries for
the first time that you have to stay on top of every little detail or things
like this will happen.

Hope everyone is well and are prayers are forever with the Harmon family.

Wanted to say a little about the PT question. Billy has a wonderfull
womenwho work with him from early intervention. She is tough with him but
never lets him cry any period of time. He cryed alot in the beginning but
after he started to cry for more than a few minutes she will stop and give
him a mommmy break, thats what she calls it of course it can be a daddy or
grama break. Then I take him and calm him and cuddle for afew and then I sit
down on the floor with them . Needless to say he rarely needs mommy breaks
anymore.Also there are days when he just needs a break period and he will
not partisapate on these days which are rare she sits and reads and sing to
him.
You always should feel free to talk to the director or higher up if you are
not happy with the people who come into your home to work with your
children. I was not happy with the ot that came to work with him and she was
hire for him trough a inhome nursing agency. She was in my eyes to rough and
also talked down to me as if she new more about his needs than I did. I
called and said I did not want her to work with him any longer and she was gone.
Always trust your feeling as to how you feel about the way people work with
any member of your family in your home. Talk to them about what you expect
from them and what makes you uncomfotable.Every six months we have a meeting
with the people that work with him and the director and the co-ordinator
about his progress and what they have in mind as aplan for the following six
months.During those meeting I am always asked what I whould like them to
work on also.These meetings are agood time to stress you fears and also a
good time to to let them know what a great job they are doing. Well' so much
for my little say so.

Karen
=========================================================================
Date:         Tue, 24 Feb 1998 20:38:50 -0800
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Jose sanchez <juliuscsr@EARTHLINK.NET>
Organization: none
Subject:      Re: Trying to stay on top
MIME-Version: 1.0
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Content-Transfer-Encoding: 7bit

Actually frank , I thought it would be helpful for everybody to know
where and who The Top Craniofacial specialists are in the U.S.A that was
the only reason I responded sorry if I offended anyone by trying to be
of help. Chip Sanchez
=========================================================================
Date:         Tue, 24 Feb 1998 21:47:08 -0800
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Robyn Johnston <robyn@ORDATA.COM>
Subject:      Re: flying
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"

Hi Jenn,

>I wanted to ask ya'll if anyone has had any problems with
>flying and the ear structure and ear infections associated with flight.

Before Brenna got PT tubes, we flew twice long distance with her. Both
times she got a nasty ear infection! Not only dampers a vacation, but
expensive because insurance won't pay for out of state stuff. Second time
we brought the medicine with us because we predicted she would probably get
one. By that point she had ear infections regularly so we were more
prepared. Since her tubes, we have flown several times with no problems.
Before tubes, she had constant fluid in her ears. She has very small ear
canals that didn't drain properly. Good luck, and talk to Jordan's
pediatrician to see if he would suggest giving you anything for the road -
just in case. Hope all is well, and Jordan is recovering well.

Hugs,
Robyn Johnston
=========================================================================
Date:         Wed, 25 Feb 1998 06:36:15 -0600
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Bob Horning <Bob.Horning@CORP.HONEYWELL.COM>
Subject:      Re: school books, ciriculum

>From: Robin MacDonald on Tue, Feb 24, 1998 6:42 PM
>Does anyone know of any children's books that address the
>topic of differences?

We have a few that Krista really likes.

Be Good To Eddie Lee by Virginia Fleming (about a boy with Down's syndrome)

My Buddy by Audrey Osofsky (about a boy and his Canine Companion dog)

Just Like Everybody Else by Jim Pierson (about a boys curiosity/fear of a girl with CP who is coming to his class, and his grandpa teaching him about disabilities)

A Very Special Critter by Gina Mayer (a cute one from the "Little Critter" series of little kids books about a new critter in a wheelchair that comes to school.)

Bob Horning

P.S. For about 3 years Krista and I have talked (part joking but part serious too) about writing a book based on the adaptive skiing program she's in. Watch for it in your local bookstore..... :-)
=========================================================================
Date:         Wed, 25 Feb 1998 08:09:12 EST
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Jennifer Graham <Jenngram@AOL.COM>
Subject:      Re: school books, ciriculum
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit

Robin,
"You Are Special" is a book by Max Lucado thad does address physical
differences. My mom got it for Jordan at Christmas. She had to order it from
Barnes and Noble as it was hard to find..but you could get a copy from
Amazon.com, or from Barnes on the internet . Its about wooden toys giving
stickers to thse who look different and all the problems this one puppet goes
through b/c hes got soooo many stickers. he finally meets his creator..the
puppet maker who takes his stickers away b/c he created this little guy this
way and he loves him just the way he is.
Its a good book, one I cna't wait for Jordan to be able to read.

I also know some school systems have a group, I am not sure who, come in and
do puppet shows for kindergarten and elementary kids about people w/
differences..I know they address Downs, wheelchairs, and kids who are "slower"
than most. Its a great program, I saw that from my neices and nephews reaction
to Jordan..They are a set of triplets..age 7 and when they heard about Jordan
their remark was.."Thats ok, God makes everyone a certain way for a reason,
and we love him just the same"..My aunt feels this reaction was a esult of
them being exposed to this program at school...and of course her fine job in
raising such wonderful kids!!!!

Jenn(Tampa/St.Pete)
=========================================================================
Date:         Mon, 23 Feb 1998 13:48:45 EST
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Marianne Camous <Camous@AOL.COM>
Subject:      Re: Joints
Mime-Version: 1.0
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Along these lines I just heard a presentation by one of our sports med docs
who spoke of a company marketing cadaver tissue (ie tendon/ligament) specially
processed to avoid rejection issues. They are using them for Anterior cruciate
ligament (knee) repairs with good success. The Orthoedists in our hospital are
about to begin using it. He spoke of this as a method for cartilage
repair/reconstruction down the road. It theoretically should be easier as
cartilage does not have it's own blood supply. There is also some compound
that is available in health food stores that is showing promise for
regeneration of articular cartilage. I can't remember the name of it as I
really hadn't made the mental leap of it's possible application for our kids.
I will check it out. It must have merit as orhtoedic surgeons are a pretty
conservative bunch and for them to advocate something available from the
alternative medicine market is a rare thing indeed!!

Marianne Camous
=========================================================================
Date:         Mon, 23 Feb 1998 13:16:32 EST
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Dawn and John Jennerjohn <DnJJenner@AOL.COM>
Subject:      COURAGE
Mime-Version: 1.0
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COURAGE
¤§@§¤§@§¤§@§¤

Courage is the strength to stand up
When it's easier to fall down and lose hold.
It is the conviction to explore new horizons
When it's easier to believe what we've been told.
¤§@§¤
Courage is the desire to maintain our integrity
When it's easier to look the other way.
It is feeling happy and alive, and moving forward
When it's easier to feel sorry for ourselves and stay.
¤§@§¤
Courage is the will to shape our world
When it's easier to let someone else do it for us.
It is the recognition that none of us are perfect
When it's easier to criticize others and fuss.
¤§@§¤
Courage is the power to step forward and lead
When it's easier to follow the crowd; their pleas resound.
It is the spirit that places you on top of the mountain
When it's easier to never leave the ground.
¤§@§¤
The foundation of courage is solid,
The rock that doesn't roll.
Courage is the freedom
Of our mind, body, and soul!
=========================================================================
Date:         Wed, 25 Feb 1998 11:55:35 -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:         Christopher Kilner <ckilner@OSF1.GMU.EDU>
Subject:      teaching about differences
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"

With all the discussion about books for teaching kids about differences,
I wanted to remind everyone that the organization About Face has a
program for doing a presentation at schools about facial differences
called (I believe) "Out of the Box" which I have heard is fantastic.
=========================================================================
Date:         Wed, 25 Feb 1998 12:18:33 -0500
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         "Amy H. Irvin" <76121.202@COMPUSERVE.COM>
Subject:      children's books
MIME-Version: 1.0
Content-Transfer-Encoding: 7bit
Content-Type: text/plain; charset=us-ascii

There are two books that I have that address differences. The first is
"Kids in the Park"(I think that's the title). It has kids with a variety of
differences playing in the park with typical kids, including a child with
Apert. In the back of the book it tells about each child, what their
difference is and some things about them, such as "he likes peanut butter
and jelly sandwiches and swinging". It is a wonderful, colorful book, and
appropriate for toddlers on up. The other book is "Someone Special, Just
Like Me" which shows kids at school, including kids with disabilities
interacting with each other. The text focuses on what all kids have in
common and that our differences are diminished the more we can see our
similarities. Happy Reading!
                        Amy Irvin   76121.compuserve.com
=========================================================================
Date:         Tue, 24 Feb 1998 08:18:27 -0800
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Robin MacDonald <macdonal@GOLDEN.NET>
Subject:      Re: flying
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit

Jennifer Graham wrote:
>
> In a message dated 98-02-23 08:02:13 EST, you write:
>
> <<
> >>
> Morning everyone..I wanted to ask ya'll if anyone has had any problems with
> flying and the ear structure and ear infections associated with flight. I know
> with non-Apert children it can be an issue so I wanted to know if anything
> unusal was told to ya'll, or any unusual experiences. We may be planning our
> first flight and I either want to be prepared or perhaps drive instead. Thanks
> in advance..
>
> Jenn(Tampa/St. Pete..barely escaping the tornadic rath of El Nino)
No problems at all with our daugther..and she has been on several
commercial flights and a few cessena flights.
=========================================================================
Date:         Wed, 25 Feb 1998 10:05:13 -0800
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Lark Jarvis <lark@INVOLVED.COM>
Subject:      Re: teaching about differences
In-Reply-To: <l03130300b119fd3a8513@[129.174.102.232]>
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"

You might also want to check out the cleft website, Wide Smiles
(http://www.widesmiles.org   ) and take a look at _Thumper, the
Cleft-Affected Bunny_ It's cleft-related, but translates to other
differences really well. Based on a true story! :)
Lark
=========================================================================
Date:         Tue, 24 Feb 1998 09:27:09 EST
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Lynn Thornquist <Thornq@AOL.COM>
Subject:      Re: flying
Mime-Version: 1.0
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Jenn,

I flew down to Florida to visit my sister when Andrew was only 6 months old
and had no problems. His doctors told me that it was no different than other
children. Just do the usual, give him something to drink when you take off
and land; since he cannot knowingly swallow when his ears get plugged. At
this time, Andrew had also had two ear infections, so I wouldn't worry about
it. Where are you flying to?

As for the tornadoes, now I have two people to worry about down there, my
sister and you.

Lynn
=========================================================================
Date:         Tue, 24 Feb 1998 09:08:12 -0600
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Chad & Denise Graham <cgraham@INFOAVE.NET>
Subject:      HELLO/BIRTHDAY
MIME-version: 1.0
Content-type: text/plain; charset="us-ascii"

Hello to everyone and hope you are all doing great! Just had to bragg a
little bit...today is Daryl's 2nd birthday, and we are having a big day.
Every birthday these guys have I think we appreciate it a little more than
most. Catch you later!

                                        Denise Graham
=========================================================================
Date:         Wed, 25 Feb 1998 15:32:19 EST
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Andrea Gartner <LUVS2WRTE@AOL.COM>
Subject:      Re: COURAGE
Mime-Version: 1.0
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GREAT POEM!! very true too.. who wrote it?
=========================================================================
Date:         Wed, 25 Feb 1998 12:52:42 -0800
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Penny Halverson <phalvers@U.WASHINGTON.EDU>
Subject:      IRC's Chat Tonite! 02/25/98
Comments: To: Crouzon Syndrome Support Group & Other Craniofacial Anomalies
          <crouzon@u.washington.edu>
MIME-Version: 1.0
Content-Type: TEXT/PLAIN; charset=US-ASCII

Hi everyone!!!

Tonite is IRC Big Chat Nite!! So let's get acquainted with each
others. :-) Keep in mind that some people will show up alittle
later than the time started. Please join us!!! :-)

Date To Meet On: Wednesday, February 25, 1998

IRC Server: ChatNet (Any locations)

Port Setting: 6667

Channel: #apertcrouzon or if noone's there, go to #widesmiles

Time: 11:00pm AT/10:00pm ET/9:00pm CT/8:00pm MT/7:00pm PT/5:00pm HT

If you haven't had a chance to download the mIRC for Windows 3.x and 95
or IRCle for MAC users. Please go to download from one of these below.

To check out the mIRC Help Page for Windows 3.x and Windows 95 users at:
http://www.qni.com/~kristib/mirc1.html
You can download mIRC 5.31 there.

For MAC Users: Please download IRCle at:
http://www.amug.org/~ircle/

If anyone needs help or have questions on accessing the chat on ChatNet.
please email to Kristi at either:

mailto:kristib@qni.com

Or for a quicker assistance, you can reach Kristi on AOL IM (AOL Instant
Messenger) and she will be available to assist you - see below:

Kristi's screen-name: LilOneB (anytimes)

You can download the AOL IM (AOL Instant Messenger) at:
http://www.aol.com/aim

You don't have to be a member to join AOL IM and it is free!
AOL IM is an one to one online chat.

Hugs, Penny

http://home.earthlink.net/~hwy2heaven/
mailto:hwy2heaven@earthlink.net
mailto:phalvers@u.washington.edu
=========================================================================
Date:         Tue, 24 Feb 1998 17:15:37 -0500
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Mark Smith <dsprado@PENN.COM>
Subject:      Fw: Fw: Jan Streblow <jstreblow@eaa.org>: FW: A little girl's wish
Comments: cc: acs@aol.com
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Date: Tuesday, February 24, 1998 4:46 PM
Subject: Fwd: Fw: Jan Streblow <jstreblow@eaa.org>: FW: A little girl's wish

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----Original Message-----=0A> > From:=09valaskjalf@juno.com [SMTP:valaskj=
alf@juno.com]=0A> > Sent:=09Friday, January 30, 1998 8:16 PM=0A> > To:=09=
embean@worldnet.att.net; Munson@Pacifier.com; insman@AOL.COM;=0A> > rclee=
@oklahoma.net; ealee1@juno.com; jmerry@kent.wednet.edu;=0A> > loni@svc.se=
sc.k12.ut.us; crtallman@AOL.COM; acs@AOL.COM=0A> > Subject:=09Jan Streblo=
w <jstreblow@eaa.org>: FW: A little girl's wish=0A> > =0A> > =0A> > > >Fr=
om: Steph Teigen <slteigen@students.wisc.edu>=0A> > > >Subject: Fwd: A li=
ttle girl's wish=0A> > > >=0A> > > >=0A> > > >>>>=0A> > > >>>>This one is=
important. No comedy here. It's about a seven=0A> > > >>>>year old girl =
with cancer. Read it and pass it on to as many=0A> > > >>>>people that y=
ou can. Occasionally we get to use this medium=0A> > > >>>>for some actua=
l good, rather than trading barbs across the=0A> > > >>>>waves. And once=
in a while things like this bring us back to=0A> > > >>>>reality, allowi=
ng us to count ourselves lucky in life. Let's put=0A> > > >>>>our networ=
k to work here! It will only take you a second to=0A> > > >>>>send this =
message.=0A> > > >>>>=0A> > >=0A>>>>*************************************=
*****************************=0A> > > **=0A> > > >>>>Jessica Mydek is sev=
en years old and is suffering from an=0A> > > >>>>acute and very rare cas=
e of cerebral carcinoma. This condition=0A> > > >>>>causes severe malign=
ant brain tumors and is a terminal illness.=0A> > > >>>>The doctors have =
given her six months to live. As part of her=0A> > > >>>>dying wish, she=
wanted to send a letter to inform people of this=0A> > > >>>>condition a=
nd to send people the message to live life to the=0A> > > >>>>fullest and=
enjoy every moment, a chance that she will never=0Ahave.=0A> > > >>>>=0A=
> > > >>>>Furthermore, the American Cancer Society and several=0A> > > >>=
>>corporate sponsors have agreed to donate three cents toward=0A> > > >>>=
>continuing cancer research for every new person that gets=0A> > > >>>>fo=
rwarded this message.=0A> > > >>>>=0A> > > >>>>Please give Jessica and al=
l cancer victims a chance.=0A> > > >>>>=0A> > > >>>>Add acs@aol.com to th=
e list of people that you send this to=0A> > > >>>>so that the American c=
ancer society will be able to calculate=0A> > > >>>>how many people have =
gotten this.=0A> > > >>>>=0A> > > >>>>If there are any QUESTIONS, SEND TH=
EM TO THE=0A> > > >>>>AMERICAN CANCER SOCIETY AT ACS@AOL.COM.=0A> > > >>>=
>=0A> > > >>>>Three cents for every person that receives this letter turn=
s=0A> > > >>>>out to be a lot of money considering how many people will=
=0A> > > >>>>get this letter and how many people they, in turn, pass it=
=0A> > > >>>>on to. Please go ahead and forward it to whoever you know=
=0A> > > >>>>- it really doesn't take much to help out.=0A> > > >>>>=0A> =
> >=0A>>>>***************************************************************=
***=0A> > > *>=0A> > > >=0A> > > >=0A> > > >=0A> > > =0A> > =0A> > ------=
--- End forwarded message ----------=0A> > =0A> > _______________________=
______________________________________________=0A> > You don't need to bu=
y Internet access to use free Internet e-mail.=0A> > Get completely free =
e-mail from Juno at http://www.juno.com=0A> > Or call Juno at (800) 654-J=
UNO [654-5866]=0A> > =0A

------=_NextPart_000_0019_01BD4147.D2E8D680--
=========================================================================
Date:         Wed, 25 Feb 1998 21:56:50 EST
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Lynn Thornquist <Thornq@AOL.COM>
Subject:      Re: Joints
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit

Just a little something I learned from working at a pet store.

People have found that if you use a combination of Vitamin C tablets and Shark
cartilage pills that together they help with the strength of the joints. I
believe that the Vitamin C tablets help to reduce the breakdown of bone. The
shark cartilage does something with rejuvenation of cartilage I believe.
Shark Cartilage has also been known to help with Cancer. Hence, it has been
proven that sharks don't get cancer.

Just a little food for thought!!!

Lynn
(Holliston, MA)
=========================================================================
Date:         Thu, 26 Feb 1998 08:26:53 -0800
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Penny Halverson <phalvers@U.WASHINGTON.EDU>
Subject:      Latest News on HR 1114 Birth Defects Prevention Act
Comments: To: Crouzon Syndrome Support Group & Other Craniofacial Anomalies
          <crouzon@u.washington.edu>
MIME-Version: 1.0
Content-Type: TEXT/PLAIN; charset=US-ASCII

Hi everyone!

I ran into this email from Cleft-Talk Digest and thought this is really
important information for you to know about. Please see below. Thanks.

Hugs, Penny :-)

------------------------------------------
Date: Wed, 25 Feb 1998 22:48:07 -0700 (MST)
From: andrea <apax@bapp.com>
To: cleft-talk@pa.mother.com
Subject: HR 1114 - Birth Defects Prevention Act

An update: HR 1114 - Birth Defects Prevention Act is not dead -
162 cosponsors in the house.. the following signed on this month:

Rep Castle - 02/05/98
Rep Combest - 02/05/98
Rep Johnson, J. - 02/11/98
Rep Duncan - 02/12/98
Rep Callahan - 02/12/98
Rep Kildee - 02/24/98
Rep Davis, D. - 02/24/98

http://thomas.loc.gov/cgi-bin/bdquery/D?d105:1:./temp/~bd4llw::
H.R.1114
SPONSOR: Rep Ortiz (introduced 03/18/97)
A bill to provide surveillance, research, and services aimed at prevention
of birth defects, and for other purposes.
----------------------------------------------------
=========================================================================
Date:         Tue, 24 Feb 1998 10:58:10 EST
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Janine Krebs <Yonstein@AOL.COM>
Subject:      Re: Jonathan's Surgery
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit

Brenda:

So glad to hear that Jonathan's surgery went well. I was going to ask how
long it took for the one finger. 4 hours is a long time for one finger.
We'll be down that road in a couple of months, after Emily's palate is
repaired.

Hope he continues to do well and the fever goes away.

Best Wishes,

Janine Krebs
=========================================================================
Date:         Thu, 26 Feb 1998 13:57:35 GMT
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:      Birthday
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"

Happy second birthday to Daryl. We are having a big party on Saturday for
Billy's 1st birthday. His birthday isn't untill the 4th ,but next saturday
is basketball play offs for two of his sisters.We have had three birthdays
in the last month for the girls and you would think we are partied out but
this one is really exciting.

Happy to hear that Johathon's surgery went well.

Karen
=========================================================================
Date:         Thu, 26 Feb 1998 14:37:42 EST
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Jennifer Graham <Jenngram@AOL.COM>
Subject:      Re: Birthday
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit

Happy Birthday to both Daryl and Billy!! What great days!!! March 18 will be
our 6 month milestone..and what a first 6 mos!!!

Also, regarding Johanthons hand surgery..if you don't mind me asking..what
exactly caused the surgery to be 4 hrs..were the bones fused as well as the
skin? just curious as we too will be down that road in a few weeks!!

Always, our thoughts and prayers are w/ the Harmon family

Hope everyone else is doing well

Jenn(Tampa/St. Pete)
=========================================================================
Date:         Thu, 26 Feb 1998 13:40:30 -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:         baconsmith <bluenose@TELUSPLANET.NET>
Subject:      Re: hurt feelings
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"

Dear Judy. We will soon be down that same road with our daughter. I've
been collecting some information on teasing and the school system and making
a few inquiries, but haven't really got anything off the ground yet. I'm
not so worried about that as I am about the other kids not wanting to play
with my daughter. I wish I knew more ideas for you, but you seem to have
covered quite a bit of territory already with the little league and soccer.

Please let us know how it goes.

Pat and the Peach

email to: bluenose@telusplanet.net
IM: onlypeach
shake and shake the ketchup bottle. none will come and then a lot'll ... unknown
=========================================================================
Date:         Thu, 26 Feb 1998 16:33:13 -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:         Don Sears <dsears@SCRS.STATE.SC.US>
Subject:      Jake Bailey
MIME-Version: 1.0
Content-Type: text/plain

Jake Bailey's Page is up!!!

---Don
=========================================================================
Date:         Thu, 26 Feb 1998 20:15:02 EST
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Frank & Annette Contrino <contrino@BUFFNET.NET>
Subject:      Re: Joints
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"

>Ann,
>
>The only thing I know about joints is what Dr. Upton has told me. I remember
>asking him "why with all the medical science, couldn't he put joints in my
>sons fingers"? He responded by saying, "I can put joints in fingers, and I
>can transplant nerves, but unfortunately, I cannot transplant tendons and
>ligaments which make the joints strong. Otherwise the joints would be weak
>and floppy." Dr. Upton is Andrew's plastic surgeon for his hands and feet.

One reason our hand surgeon gave us for not being able to use artificial
joints for Nicole's fingers was that artificial joints have a limited life
span (maybe 10 years) so it's OK to give older people artificial knees and
hips but to do this for a child means many surgeries throughout their life.
That was in addition to the lack of blood vessels, tendons and ligaments.
=========================================================================
Date:         Thu, 26 Feb 1998 20:15:10 EST
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Frank & Annette Contrino <contrino@BUFFNET.NET>
Subject:      Re: Trying to stay on top
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"

>Actually frank , I thought it would be helpful for everybody to know
>where and who The Top Craniofacial specialists are in the U.S.A that was
>the only reason I responded sorry if I offended anyone by trying to be
>of help. Chip Sanchez
>

Chip, sorry but I really have no idea what you're referring to. I never
mentioned anyone being offended and didn't include a reply you made as an
example. I'm not criticizing anyone or their posts. I'm just recommending
a way to limit message traffic. I've seen other listservers and newsgroups
become congested with so much traffic that people leave them because they
cannot devote enough time to try to keep up with them. That wouldn't be a
good fate for this listserver.

Frank Contrino
contrino@buffnet.net
=========================================================================
Date:         Fri, 27 Feb 1998 11:47:12 -0800
Reply-To:     Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From:         Penny Halverson <phalvers@U.WASHINGTON.EDU>
Subject:      IRC's Chat Tonite! 02/27/98
Comments: To: Crouzon Syndrome Support Group & Other Craniofacial Anomalies
          <crouzon@u.washington.edu>
MIME-Version: 1.0
Content-Type: TEXT/PLAIN; charset=US-ASCII