========================================================================= Date: Fri, 1 May 1998 23:22:31 +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: Cold Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

Hi Raquel

All this sounds VERY normal to me - both the crying and the cold!

Re crying - great stuff, let it go, you don't want all that tension sitting on you when you head for the hospital next week. Oh yes, add tissues and headache pills to your list of things to take to hospital - and drink lots of water!

Re colds - Amy did that to us as well, but the anaesthetist came and chatted to us and assured us he wouldn't go ahead if he was at all doubtful. And the surgery went ahead. BUT, if you believe in the power of vitamins get them going (for you both) and on the day just accept whatever happens - you won't want it to go ahead if Nicole isn't well.

Thinking of you. Hugs coming your way. Ann NZ ========================================================================= Date: Fri, 1 May 1998 23:22:33 +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: US Postage info (photos) Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

Great - I hope this means we are on your mailing list as well Chris!

We have received two lots of delightful photos so far - many thanks to Denise and Janine. It is amazing how similar our children are - And isn't Nikita like her Mum! Janine, your's was particularly well timed as one of "our" parents was around last night when the 1st year medical students were here and he was amazed to see Emily with her glasses at 8 months - he was concerned about his 4 year old needing glasses so young, so this provided him with reassurance.

I gave him a list of the addresses for the photo exchange.

Tomorrow I will be getting ours copied and start sending them out this weekend - I apologise that they will be lasercopies rather than reprints as we don't have the negatives of the photos we have chosen, but it is our most recent family one and our favourite of Amy.

Looking forward to the postie's arrival!

Cheers, Ann NZ

At 10:02 AM 30/04/98 -0400, you wrote: >To prevent the return of photos in the picture exchange for >"insufficient postage," I thought I would share what I learned at the >Post Office this morning. > >A regular letter (<1/2 ounce) from the US to Canada is 46 cents. >A regular letter (<1/2 ounce) from the US to New Zealand is 60 cents. > >If you don't want to bother with exact postage, two 32 cent stamps will >get the letters delivered. > >Chris > > ========================================================================= Date: Fri, 1 May 1998 08:08:30 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jenngram <Jenngram@AOL.COM> Subject: Fwd: mansong Mime-Version: 1.0 Content-type: multipart/mixed; boundary="part0_894024510_boundary"

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I am sending this on b/c I think its sooo funny...my husband thinks I will inevideblly offend someone, but it had me laughing each time I replayed it!!!!

So enjoy!!!!

Jenn(Tampa/St. Pete)

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From: Jenngram <Jenngram@aol.com> Return-path: <Jenngram@aol.com> To: Thornq@aol.com, nolph@hotmail.com Cc: Mishsky@aol.com, tlee@selu.edu Subject: Fwd: mansong Date: Tue, 28 Apr 1998 19:22:34 EDT Organization: AOL (http://www.aol.com) Mime-Version: 1.0 Content-type: multipart/mixed; boundary="part1_894024510_boundary"

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Download this one and play it...ITS HYSTERICAL!!!!!!

Jenn

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Return-Path: <LNEWTON1@prodigy.net> Received: from rly-zc01.mx.aol.com (rly-zc01.mail.aol.com [172.31.33.1]) by air-zc04.mail.aol.com (v41.15) with SMTP; Sat, 18 Apr 1998 11:21:12 -0400 Received: from pimout1-int.prodigy.net (pimout1-ext.prodigy.net [198.83.18.53]) by rly-zc01.mx.aol.com (8.8.5/8.8.5/AOL-4.0.0) with ESMTP id LAA09739 for <jenngram@aol.com>; Sat, 18 Apr 1998 11:20:20 -0400 (EDT) Received: from oemcomputer (BatonRougeLADP132-71.SplitRock.net [209.156.132.71]) by pimout1-int.prodigy.net (8.8.5/8.8.5) with ESMTP id LAA21670 for <jenngram@aol.com>; Sat, 18 Apr 1998 11:03:45 -0400 Message-Id: <199804181503.LAA21670@pimout1-int.prodigy.net> Reply-To: <LNEWTON1@prodigy.net> From: "leonard b newton" <LNEWTON1@prodigy.net> To: "Joe Graham" <jenngram@aol.com> Subject: mansong Date: Sat, 18 Apr 1998 09:16:29 -0500 X-MSMail-Priority: Normal X-Priority: 3 X-Mailer: Microsoft Internet Mail 4.70.1161 Mime-Version: 1.0 Content-type: multipart/mixed; boundary="part2_894024510_boundary"

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Joe really liked this one!!

Jenn

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Joe, us guys can all relate to this one.=0A

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--part0_894024510_boundary-- ========================================================================= Date: Fri, 1 May 1998 09:48:07 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: JPayne5634 <JPayne5634@AOL.COM> Subject: Fwd: IRC Big Chat Nite Tonite 5/1/98 Mime-Version: 1.0 Content-type: multipart/mixed; boundary="part0_894030487_boundary"

This is a multi-part message in MIME format.

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From: JPayne5634 <JPayne5634@aol.com> Return-path: <JPayne5634@aol.com> To: crouzon@u.washington.edu Subject: IRC Big Chat Nite Tonite 5/1/98 Date: Fri, 1 May 1998 09:47:24 EDT Organization: AOL (http://www.aol.com) Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Hi everyone!!

Tonite is IRC Big Chat Nite!! So let's get acquainted with each other :) Keep in mind that people wiil show up later then the time we started. Please join us :)

Date to Meet On : May 1, 1998

IRC Server : ChatNet ( Any locations)

Port Setting: 6667

Channel: #apertcrouzon

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

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

For those with Windows 3.11 or Windows 95, please download mIRC at http://www,mirc.co.uk/

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

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 its free!! AOL IM is an one to one online chat My AOL IM is Lauren1273

Hugs. Lauren

--part0_894030487_boundary-- ========================================================================= Date: Fri, 1 May 1998 10:01:44 -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: Qing Gong <qing@ASRC.CESTM.ALBANY.EDU> Subject: pictures MIME-Version: 1.0 Content-Type: text/plain; charset="us-ascii" Content-Transfer-Encoding: quoted-printable

Hi, We will be mailing out pictures of Vivi to everyone on the list next = week. I only have a list with 31 addresses, who has the latest version = of the list, would you please post it? I thought someone Said there were 34 people on the list now. Thanks. Qing ========================================================================= Date: Fri, 1 May 1998 11:05:41 -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: Chad & Denise Graham <cgraham@INFOAVE.NET> Subject: LEFT OUT ADRESSES MIME-version: 1.0 Content-type: text/plain; charset="us-ascii"

Ann, Thanks for the left out names. There were two that I didn't have. Thanks for letting me know. I would feel awful if I left someone out.

Denise Graham ========================================================================= Date: Fri, 1 May 1998 14:14:47 -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: Don Sears <dsears@SCRS.STATE.SC.US> Subject: Re: I'm so happy to find you . Comments: To: JReyesmich <JReyesmich@aol.com> MIME-Version: 1.0 Content-Type: text/plain

Your english is much better than my Spanish would be! I will forward your letter to our group and subscribe you to our listserv. When you write an email to apert@listserv.aol.com you will be writing to about 150 people all over the world, and they will answer you. Gook luck and welcome to our family!!! Don

> -----Original Message----- > From: JReyesmich [SMTP:JReyesmich@aol.com] > Sent: Sunday, March 29, 1998 11:12 PM > To: catndon@apert.org > Subject: I'm so happy to find you . > > hi, my name is Claudia , I'm from Argentina, I have a sister vivi she > was born > with apert syndrome. When I saw ceci photo I stared to cry because she > has the > same face, hair ,smile, chen, everything than vivi. Vivi is 15 , but > she is > living in Argentina, she got severals operations, but she still has > dificulties to breath well . also she has genetic desorders such as > polydactyly, her finger aren't separeted. I would like to explain > more about > her situation, but my englis is so poor. > I came to USA because I know here is all tecnology, but I have been > here just > a few month and I don't have any friend to ask about this, or where > can I go > and how. I would like to know if you could tell me how much money do I > need to > afford all posible treatment for her. > or if there is any special program for this syndrome. thanks, thanks a > lot. > Claudia Mastellone. ========================================================================= Date: Fri, 1 May 1998 12:52:39 -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: Laurie Ann Bailey <jkb@ELPASO.NET> Subject: Re: Talking MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

Judy Amerman wrote: > > Lynn, > Nick only said about twelve words when he started school at age three. He > is now going to be eight on Sunday and he never shuts up. > Your day will come, trust me. > He is annoying sometimes because his mouth is always going, but I'd really > miss miss it if I didn't hear it. > Most of his words are understandable but he is still getting speech at > school. > When Laurie Bailey was here, she understood him real well, and can vouch > that he is a real vocalizer. > Hope this helps. > > Marianne, > Did your attachment ever come through yet? Because if it did, I missed it. > > I have a question. I had Teeter's page in my favorites. Then I also put > Nick's page in my favorites. Now when I pull up Teeter's page I get Nick's > page with no pictures. Does anyone know why? But when I pull up Nick's > page in favorites ,I do get his photos. > I guess when Don gets back and gets this page worked on I should be ok. > > Laurie, > Any takers yet? > > Judy > jamerman@uti.com

Let me just say that Nick was a joy to be around. He is very vocal and easily understandable.

Jacob does alot of verbalizing but, most of the time it isn't comprehensible. He has alot of words in his vocabulary. We are working on getting him to use them more. For example, he can say: vacuum, doctor, baby, Matt, Mike and of course, mommy and daddy.

Judy, No takers except Dori Jefferson. So, still waiting on more. Also, with me being back to work, it might take me a little longer to get some information together. I'm off on Monday and plan on looking into places then.

Talk to you soon! Laurie Bailey jkb@elpaso.net ========================================================================= Date: Fri, 1 May 1998 13:01:22 -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: Laurie Ann Bailey <jkb@ELPASO.NET> Subject: Re: Cold MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

Jack and Raquel wrote: > > Well, my nerves are now definetly SHOT.... Nicole's surgery is next > week Thursday 05/07 a week from tomorrow....and guess what she started a > new cold yesterday......Like we haven't been waiting for this moment to > come and go and now what??? > > I don't know if one week is enough time for the cold to get better and > go away.....I don't think I can take more of this, all I've done today > is cry.....I'm sorry but everyone that I have been crying to today have > no idea....You guys are the only people I can cry to and know exactly > what I am going through.....So I am crying.....Has anyone experienced > this before (a week before surgery) have they gone through the surgery > or did they postpone? > > We had two appointments today with the neurosurgeon and then right after > with the plastic surgeon, you know the last visit before the surgery, > but the neurosurgeon cancelled because he was called on an emergency > surgery. So I went ahead and cancelled the plastic surgeon because it > was raining (after weeks of no rain) and since Nicki has her cold I > didn't want to make matters worse. So I mentioned the cold to the > neurosurgeons secretary and she said that two days prior to surgery if > she still has a bit of a cold, she will have to go to her pediatrician > for an o.k. for surgery and also probably the anesthseologist (sorry > about the spelling) would have to give the o.k. I don't know if this is > the normal procedure when there is a cold, I mean this came from the > mouth of the secretary not the doctor. I think we will re-schedule the > visits for either Friday or Monday, I guess by then we should know if > the cold is getting better or worse. > > I'm so sorry about all this rambeling I was just so psyched up about the > surgery being next week and now with this cold its a possibility it > won't happen next week, I'm going to run out of nails to bite..... > > If anyone has gone through this maybe you can enlighten me a bit.... > > Thanks all... > > Nervous Raquel in well needed rainy south Florida...

Before Jacob's second cranial surgery he also got a cold. He was much better by the surgery but we still let the anesthesiologist know. He told us that if there was any wheezing in the lungs, they would cancel the surgery because of the risk of the affect on the lungs. Luckily, Jake's cold was strictly in the nasal cavity and we were able to proceed with the surgery. Keep your doctors informed. I know the frustration of the possibility of postponing the surgery but, remember, it might be better for your kiddo to postpone, than to go ahead and take any risks.

Laurie Bailey jkb@elpaso.net ========================================================================= Date: Fri, 1 May 1998 16:11:20 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: ETolson643 <ETolson643@AOL.COM> Subject: Re: Cold Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

This is such a frustrating aspect of having a child who needs frequent surgery. Tim has had many procedures postponed and before every scheduled surgery we start to really get anxious about his health. We know how you are feeling right now!!! Usually the anesthesiologist has the final say.

Good luck

Beth Tolson Boston ========================================================================= Date: Fri, 1 May 1998 17:56:07 -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: ize <ize@TACOMA.CEATLABS.OKSTATE.EDU> Subject: Picture addresses MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

> > Rachel Fletcher > > 3900 Vernon > > Memphis, Tn 38122 > > > > Janine Krebs > > (Emily) > > 187 Rhode Island Avenue > > Massapequa, New York 11758 > > > > Andrea Gartner > > 11394 Royal Tee Cir. > > Cape Coral, FL 33991 > > > > Denise Graham > > (Daryl) > > 1030 Fairfield Pike > > Shelbyville, TN 37160 > > > > Ann Luxton and Howard and Amy Esler > > 6 Peter Mulgrew Street > > Avondale, Auckland 7 > > New Zealand > > > > Jennifer Graham > > 6220 7th Ave North > > St. Petersburg, FL 33710 > > > > Carmen Rae Hill (Mike and Robin Hill) > > 70 Woodmoor > > Newnan, Georgia 30263 > > > > The Bacon Smith Family > > 100 Clarendon Road, NW > > Calgary, Alberta, Canada > > T2L 0P3 > > > > Carol Graves > > (Nicholas) > > 370 Oakland Rd > > Madison, AL 35758 > > > > Joanne Lindamood > > 1533 Regent Avenue > > Springfield, OH 45503 > > > > Raquel Miller > > (Nicole) > > 16703 Redwood Way > > Weston, Fl. 33326 > > > > Judy or Nick Amerman > > 1035 E. Fairview Ave. > > Morris, Il. 60450 > > > > The Sieberts > > 5226 Walnut Peak Ct. > > Kingwood, TX 77345 > > > > Felipe Ize > > 124 Brumley # 10 > > Stillwater, OK 74074 > > > > The Jennerjohns > > 6987 Ridgetop Dr. N E > > Kiezer, Oregon 97303 > > > > The Smith's (Patti, Daniel & Jasmyn) > > 1538 Morgan Road > > San Bernardino, CA 92407 > > > > Dori Jefferson > > 83 Pine Lane > > Murphysboro, IL 62901 > > > > The Lynch Family > > P.O. Box 609 > > Lake George, NY 12845 > > > > Quentin Zaengle > > 119 Tudor Drive > > North Wales, PA 19454 > > > > The Bailey Family > > RR 1, Box 74 > > El Paso, IL 61738 > > > > Lynn Thornquist > > 4 Taylor Road > > Holliston, MA 01746 > > > > Leann Maclean > > RR 2 Site 4 Box 35 > > Onoway, Alberta, Canada > > TOE 1VO > > > > Roxanne Chan > > 16240 East McGill Road > > La Mirada, CA 90638 > > > > Vivi Zhang > > 2279 Pinehaven Dr. > > Niskayuna, NY 12309 > > > > Ellen Kelley > > (Holly) > > 411 Spring Mill Rd > > Anderson, IN 46013 > > > > Jennie Muggli > > Rt 1 Box 105C > > Weimar, TX 78962-9530 > > > > Kris Contreras > > 1422 N. Park Ridge > > Deer Park, TX 77536 > > > > Mark and Michele Smith (Kayla and Megan) > > 208 Connecticut Avenue > > Warren, PA 16365 > > > > Morgan Kaye McGahan > > 11 Elsway Road > > Short Hills, New Jersey 07078 > > > > Jones Family (Jerold, Colleen, Julianne, Jacob and Jessica) > > RR 3 Box 275 > > Middleburg, PA 17842 > > LeCara Family (Sarah, Tamara Charles > 8907 Gauguin > Houston,Texas 77088

More addresses:

Mark and Michele Smith 208 Connecticut Avenue Warren, PA 16365

Morgan Kauje Mcgahan 11 Elsway Road Short Hills, New Jersey 07078

Jones Family RR 3 Box 275 Middleburg, PA 17842

Lecara Family 8907 Gayguin Houston Texas 77088

Foster Family 1335 Sanderson Ave Scranton, PA 18509

Diane Youngblood 445 Horne Hollow Rd Culleoka, TN 38451

Robyn Jonston PO Box 25633 Eugene, OR 97402

The Contrinos 7310 Norman Road North Tonawanda, NY 14120

Marianne Camous & David Milburn Sarah Kate and Evan Milburn 412 Sycamore Street San Carlos, CA 94070

Margaret Iucker C/O Joana Magno 811 Moaniala St. Honolulu, HI 96821

Rene Tait 1909 Marten Avenue Comox, B.C. V9M 2J9 Canada

Nate Finch 10 Field Rd. Lexington, Ma 02173

Christina (Zoey) Mathis 7735 Branston San Antonio, TX 78250

The Kilner Family 6571 Sand Wedge CT Alexandria, VA 22312

Sara Younkin PO Box 534 Lewisburg, PA 17837

We have a total of 42 addresses. If we missed someone, please let me know. Thanks, The Ize Family. ========================================================================= Date: Fri, 1 May 1998 20:25:53 -0400 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: foster <foster@ICONTECH.COM> Subject: Happy to find you Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

Claudia,

Welcome, we are the Fosters and we live in Pennsylvania. We have a son named Billy who was born with Apert Syndrome.He is almost 14 months old. Your English seems pretty good to me. Your sister Vivi sounds like most of the people who were born with this syndrome. She is lucky to have a sister like you who cares so much. Where in the US do you live? I just wanted to welcome you to our family and to let you know that there are wonderful people here who will be thrilled to hear about your sister Vivi. Someone somewhere will be able to answer some of your questions and this is a great place to start.

Karen&Bill Foster ========================================================================= Date: Fri, 1 May 1998 19:57:46 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "D. Jefferson" <djeff@MIDWEST.NET> Subject: Re: Pictures: MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit

Friends:

Dear Friends:

I just sent off 40 pictures. I took 24 pictures of Seth out side in rainy weather this morning before school and Wal-Mart developed doubles for me in just one hour. You should get them Tuesday or Wednesday. I hope I did not miss anyone. Please let me know if you do not get a picture of Seth by the end of the week. Seth loves to create and illustrate dinosaur books (to use the word loosely). So I sent each of you a page from one book or another.

I received Jordan Graham and Emily Krebs pictures. What cute kids. Jordan is a big boy and Emily looks great in glasses. It is fun to get correspondence from a person in the mail. All I usually get is computer generated invitations to open another charge card account or month bills. I miss getting real mail- ah those were the days.

Warmly, Dori

Dori A. Jefferson djeff@midwest.net ========================================================================= Date: Fri, 1 May 1998 21:12:03 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: ChMathis <ChMathis@AOL.COM> Subject: Re: Cold Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

I just wanted to add my two cents about colds before surgery. The day before Zoey's cranial vault surgery, Zoey started a cold, and after the plastic surgeon looked at her, we decided not to even hold the anesthesiologist appt because there was no way they'd "pass" her, so we rescheduled for the next month. Zoey didn't just get a "little cold" either, she was hospitilized for three weeks, almost right up until the rescheduled surgery date! I was shocked when she passed her pre-op appt, because she had only been out of the hospital for a week and a half. Then, when it came time to take the distractors out, she got sick again, and we had to yet again be postponed for a month, this time she stayed out of the hospital. It's extremely stressful, and crying certainly does help. I don't know if this helps anyone, I hope it does. Sincerely, Christina, Zoey and Tia Mathis (ChMathis@aol.com) from the now also in need of rain, Texas ========================================================================= Date: Fri, 1 May 1998 21:21:49 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: ChMathis <ChMathis@AOL.COM> Subject: Re: walking Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Heidee: My daughter, Zoey Mathis is 15 months old and could care less if she bears weight on her legs or not. I'm beginning to wonder if she's ever going to walk. I guess she's satisfied with scooting around on her behind! If I stand her up to a table and she's feeling good, she'll stand up, as long as there is something behind her butt. If I don't put something (i.e. a childs chair, a stool, my leg) she gets scared, I think, and will cry until I sit her down. She also gets PT and hopefully, once she gets out of the hospital, we'll be able to start it up again. Hope this helps Sincerely, Christina, Zoey and Tia Mathis Sunny San Antonio! ========================================================================= Date: Fri, 1 May 1998 21:35:08 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: ChMathis <ChMathis@AOL.COM> Subject: Re: Cold Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Jenn's story about preparing for surgery reminded me of what happened to us. Being that every surgery Zoey has gone through has been cancelled atleast once, when we were coming up on this hand surgery (April 7th), I was a wreck! My face broke out in a million pimples it seemed, and I couldn't concentrate on anything. Well, we got all the way to the day before her surgery, pre-op, we get all the way into the surgeon's office, only to be told that both surgeon's couldn't be there tomorrow, so they were rescheduling the surgery for five weeks from then. I was a little more than upset. Only by the Lord's will, did Zoey stay healthy while we waited for the surgeons to get the schedules straight. Christina, Zoey and Tia Mathis from Sunny San Antone! ========================================================================= Date: Fri, 1 May 1998 21:57:07 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: ChMathis <ChMathis@AOL.COM> Subject: Re: Welcome Lindseys! Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

I have not had the opportunity to welcome the LINDSEY'S yet. Hello, my name is Christina Mathis. I'm the single parent of two girls; Zoey (has Apert syndrome) was born on Jan 18, 97 (I think she shares a birthday with another child, forgive me for forgetting names), she was trach'ed at 3 weeks old, she had a cranial vault w/ distractors at age 6 months, and her first hand surgery was just April 7th, giving her free use of her thumbs and releasing her pinkies! She's been in and out of the hospital alot in her 15 months of life, in fact, she's in right now for pneumonia. But, the last time she was in the hospital (for being sick) was January, so we are definately making progress. Zoey has an older sister by the name of Tia. They're both gorgeous, and as soon as I possibly can, I will get some pictures developed and send them out. Welcome, again. Sincerely, Christina, Zoey and Tia Mathis from Sunny San Antonio! ========================================================================= Date: Fri, 1 May 1998 22:13:21 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: ChMathis <ChMathis@AOL.COM> Subject: Re: Many things..... Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Lynn: I know it's been awhile since you mentioned the followings things, but I've just now had time to sit down and answer mail since Zoey's been in the hospital (it's Christina). The very first ultrasound I ever had showed that Zoey had enlarged ventricles, that's how we stumbled upon finding out about her condition. I believe she still does have enlarged ventricles, but they doctors have said, it doesn't effect how her brain works, and her brain works just fine.

About being overprotective. I find myself forcing myself not to be overprotective with Zoey. I'm very lucky that Zoey is very smart, and figures out quick what hurts and what doesn't. Over the months, I've gone from being very apprehensive about being out in public with her to showing her off quite proudly whenever we're out. Some people look and some people stare rudely, and other deal with it "appropriately". To those who really want to know what "she has", I explain and I feel that I'm helping them out, because now they can say they've seen an "Apert baby" and maybe it'll help the next Apert child/adult that they see. Hope it helps, Sincerely, Christina, Zoey and Tia (from Sunny San Antonio) ========================================================================= Date: Fri, 1 May 1998 23:02:59 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: Copperhd87 <Copperhd87@AOL.COM> Subject: Re: Many things-enlarged ventricles, CT scans Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Lynn, Mitchell's original neurosurgeon said that he had "mildly enlarged ventricles." The radiologist's report described them as "very mildly enlarged." The neurosurgeon said that (now don't get too worried) it could be a sign that hydrocphelous (sp?) could later develop. He told us that when Mitchell was three months old and I worried myself sick about it for nine months. I was more worried about that than about his surgery. Sometimes I feel like I lost so much of the joy of his babyhood because of his problems and my worries. I'm sure you can all relate to that. Mitchell is now 16 months old and doing fine as I know your Andrew is. I asked the neurosurgeon if there were perfectly typical people walking around with enlarged ventricles and he said yes. He even said that there were studies to prove that. Mitchell's current doctor, Dr. Marsh, did not mention anything about his ventricles, so I'm assuming he doesn't see a problem. Mitchell had a CT scan 3 months and 6 months after his initial surgery then also one in preparation for his surgery on May 21st. He has only sagittal craniosynostosis, he does not have Aperts. Hope this helps, Resa ========================================================================= Date: Fri, 1 May 1998 23:13:34 -0400 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jack and Raquel <jara1@BELLSOUTH.NET> Subject: Pictures MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

Hi everyone....Happy Friday...

Just want to let everyone know that we will be mailing out 35 letters with Nicole's picture tomorrow, so you all should be receiving them early next week.

I really wanted to get them out before her surgery (if all goes as planned, cold permitting) next Thursday and we made it. We also took a bunch of pictures of Nicki and then took them to WalMart and did the one hour developing. Envelopes have been signed sealed and will be delivered.

Have a great weekend ya'all....

Raquel Miller..... ========================================================================= Date: Fri, 1 May 1998 23:18:31 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Copperhd87 <Copperhd87@AOL.COM> Subject: Re: Many things-therapists Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Lynn, Mitchell had his first home visit today with an occupational therapist from Sooner Start--the Oklahoma version of an early intervention program. I want to thank everyone on the list for mentioning thier experiences with therapists because it was those conversations that encouraged me to call and get the ball rolling. Mitchell barely qualified. He had to be 25% delayed in two areas, or 50% delayed in one area. They graded him very strictly due to his upcoming surgery, but I think it really does not take that much delay to get in the program which by the way is free due to payments by taxpayers--i.e. you and me. I think we have all been trained to be accepting of different times of development in children. However, these programs put this all into facts and figures. Perfectly typical kids can and do qualify. Children previously considered late talkers, walkers, etc., are now considered at risk for developing additional problems and so services are offered. I think you should tell your in-laws that it's a free program being used by all kinds of children regardless of disability or income level. Most people love to take advantage of anything free offered by the government. It's not that Andrew needs it, he deserves to get the benefit of their tax dollars. Maybe that might help. BTW, the staff here is so helpful and friendly. It seemed like they were just waiting there by the phone to receive my call and come out and start therapy.

Good luck, Resa ========================================================================= Date: Fri, 1 May 1998 23:46:18 -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: ROBIN L HILL <CARMENRAE@PRODIGY.NET> Subject: Re: Welcome Lindseys! MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit

Zoey and Carmen Rae share birthdays; Zoey being exactly (well not counting down to hours, minutes, etc.) one year older!

---------- > From: ChMathis <ChMathis@AOL.COM> > To: APERT@LISTSERV.AOL.COM > Subject: Re: Welcome Lindseys! > Date: Friday, May 01, 1998 9:57 PM > > I have not had the opportunity to welcome the LINDSEY'S yet. Hello, my name > is Christina Mathis. I'm the single parent of two girls; Zoey (has Apert > syndrome) was born on Jan 18, 97 (I think she shares a birthday with another > child, forgive me for forgetting names), she was trach'ed at 3 weeks old, she > had a cranial vault w/ distractors at age 6 months, and her first hand surgery > was just April 7th, giving her free use of her thumbs and releasing her > pinkies! She's been in and out of the hospital alot in her 15 months of life, > in fact, she's in right now for pneumonia. But, the last time she was in the > hospital (for being sick) was January, so we are definately making progress. > Zoey has an older sister by the name of Tia. They're both gorgeous, and as > soon as I possibly can, I will get some pictures developed and send them out. > Welcome, again. > Sincerely, > Christina, Zoey and Tia Mathis > from Sunny San Antonio! ========================================================================= Date: Fri, 1 May 1998 21:21:34 -0700 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Robyn Johnston <robyn@ORDATA.COM> Subject: Re: mailing pictures Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

Hi All,

I am attempting to get our pictures organized to send out to the list next week as well. I have all the envelopes and stamps. We have a roll of film to be finished and developed. - hopefully of at least one good picture of the whole family. Otherwise you will receive one of our family in the hospital with me still in my hospital gown. Recovering from delivering Caden ;-) It is the only picture of the whole family that is decent that we have so far!

Looking forward to seeing all of your precious kiddo's!

Hugs, Robyn

At 09:41 PM 4/30/98 -0400, you wrote: >Hi all, > >Same here we will be sending a mass mailing of pictures in the next few >days.....So Nicole will be arriving to your homes very soon.... > >See ya.. > >Raquel.. > ========================================================================= Date: Fri, 1 May 1998 21:25:39 -0700 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Robyn Johnston <robyn@ORDATA.COM> Subject: Re: picture list-another try Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

Hi MArianne.

I never received the attachment. Did everybody else get it? Just checking to see if for some reason my system did not receive it.

Thanks, Robyn Johnston

Actually an attachment is a separate file sent >in it's entirety which can be downloaded (or moved onto the drive you specify >so you can open it later) for your use. ========================================================================= Date: Sat, 2 May 1998 14:23:25 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: TDeakins1 <TDeakins1@AOL.COM> Subject: Re: Disney World Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Don't mean to intrude into this discussion on Orlando, but....

You're right, Disney in July is only less sufferable than Disney in August and early September. I live in Orlando and, like many here, we go to Busch Gardens in Tampa during the summer. Tends to be a little cooler due to Gulf breezes and there is orders of magnitude more shade. Also, there's more to do for families with younger and older children. Food is better and the beer, for those interested, is free. Busch provides an excellent animal park integrated into the amusement park whereas, at Disney, it will cost roughly $100 a person to see animals and do rides. The price of lodging in Tampa is also vastly less than Orlando. We rent 2-bedroom condos right on Tampa bay, which offers its own amusements and sights, for roughly $80 a night.

Our daughter, Casey, who is now 11 and is an Apert's child has always found Busch and Tampa a better summertime place than Disney. We tend to do Disney in the late fall, early spring. -Tony Deakins ========================================================================= Date: Sat, 2 May 1998 14:05:32 -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 and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Thomas Troudt <ttroudt@SPRYNET.COM> Subject: Optic nerve pressure MIME-Version: 1.0 Content-Type: multipart/alternative; boundary="----=_NextPart_000_0004_01BD75D3.5EDE0600"

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------=_NextPart_000_0004_01BD75D3.5EDE0600 Content-Type: text/plain; charset="iso-8859-1" Content-Transfer-Encoding: quoted-printable

We have just seen our eye doctor this past week. She has told us that = she is very concerned with Derek's vision and that there might be some = pressure on his optic nerve. Has anyone had any experience with this? = We are scheduled for a ct scan in a couple of weeks. We have been = closely monitoring Derek's vision since birth. We go every 2-3 months = to have his eyes checked. Since Derek is now old enough to read the = picture chart, he has been able to do an actual vision check. Our eye = doctor said that the only way to know if there is any pressure on the = nerve is by the vision being poor or progressively getting worse. Derek = has had glasses since he was 8 months old . Even with his glasses, he = is seeing only 20\60 which can be an indicator for pressure. The only = treatment is to have his craniofacial surgery earlier than planned. He = is 3 now and we were not expecting surgery until he was almost 6. I am = not trying to worry about it until after the results of the ct scan, but = I am a very paranoid mother and worring is what I do best. Any input = would be appreciated. Thanks,=20 Diana Troudt

------=_NextPart_000_0004_01BD75D3.5EDE0600 Content-Type: text/html; charset="iso-8859-1" Content-Transfer-Encoding: quoted-printable

<!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 4.71.2016.0"' name=3DGENERATOR> </HEAD> <BODY bgColor=3D#ffffff> <DIV><FONT size=3D2>We have just seen our eye doctor this past = week.  She has=20 told us that she is very concerned with Derek's vision and that there = might be=20 some pressure on his optic nerve.  Has anyone had any experience = with=20 this?  We are scheduled for a ct scan in a couple of weeks.  = We have=20 been closely monitoring Derek's vision since birth.  We go every = 2-3 months=20 to have his eyes checked.  Since Derek is now old enough to read = the=20 picture chart, he has been able to do an actual vision check.  Our = eye=20 doctor said that the only way to know if there is any pressure on the = nerve is=20 by the vision being poor or progressively getting worse.  Derek has = had=20 glasses since he was 8  months old . Even with his glasses, he is = seeing=20 only 20\60 which can be an indicator for pressure.  The only = treatment is=20 to have his craniofacial surgery earlier than planned.  He is 3 now = and we=20 were not expecting surgery until he was almost 6.  I am not trying = to worry=20 about it until after the results of the ct scan, but I am a very = paranoid mother=20 and worring is what I do best.  Any input would be = appreciated.  =20 Thanks, </FONT></DIV> <DIV><FONT=20 size=3D2>          &nbs= p;           &nbsp= ;            =             &= nbsp;   =20 Diana Troudt</FONT></DIV></BODY></HTML>

------=_NextPart_000_0004_01BD75D3.5EDE0600-- ========================================================================= Date: Sat, 2 May 1998 19:01:08 -0400 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jack and Raquel <jara1@BELLSOUTH.NET> Subject: Pictures/eyes MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

Happy weekened everyone....

Today we received Ceci and Daryl's pictures. It's so exciting to go to the mail box to see who will be there today. Thanks to the Kilners and the Grahams for sending them.

Everyone should be receiving Nicoles pictures next week they were mailed out today. I think it was a total of 35 so far, I know more addresses are coming in. Those will go out A.S.A.P.

Well Nicki's cold seems like its getting better so hopefully things will go as planned with the cranial surgery next Thursday 05/07. But of course we'll know for sure in a couple of days. Please keep Nicki in your prayers...

Diana, Nicole went to her eye doctor last week he said that her vision is fine (it's really weird how they can tell at 7 months) so she will not need glasses. But he did mention that she will probably need muscle strengthning surgery which he will try to do at the same time they do her first hand surgery. He mentioned it is not an emergency right now but he will difinitely need to do it before age 2. Try not to worry as long as you periodically take Derek to the eye doctors to check on him I'm sure they will know exactly what to do and when.

Its really odd how our kiddos having the same syndrome still have different symtoms and requirements. But we as parents just have to continue doing what we are doing and they will be just fine.

Signing off for now...

Raquel Miller...in again sunny south Florida.... ========================================================================= Date: Sat, 2 May 1998 19:17:31 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Frank & Annette Contrino <contrino@BUFFNET.NET> Subject: Pictures Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

Hey gang,

I just mailed off an HTML version of the current list of folks on the picture exchange to Don. I took the last message the Ize's sent and put it into a spreadsheet, did some sorting, eliminated duplicates and stuck in the HTML tags to complete it. I know it needs some more work, but it's a start. At least it'll be a reference for us if we lose a mail message. I presume Don will put it up on Teeter's Page. Our pictures will probably be sent in late May. We're heading for a vacation and hope for some good photo ops. In the mean time, if you'd care to see a couple of recent photos of Nicole, I've updated our home page including a smoke snorting Buffalo Sabres logo (sorry Flyers fans). There's a photo of the balloons Nicole set free in honor of Ceci. Check it out! http://www.buffnet.net/~contrino

Frank Contrino contrino@buffnet.net ========================================================================= Date: Sat, 2 May 1998 19:36:35 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Yonstein <Yonstein@AOL.COM> Subject: Test Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

This is just a test to check my mail. Can't believe there was no mail at all today from the list. Hope all is well with everyone.

Janine ========================================================================= Date: Sat, 2 May 1998 20:21:42 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Yonstein <Yonstein@AOL.COM> Subject: HELP Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Can someone send me mail privately so that I can see if I am getting it? The test letter I sent to the list did not come to me. I don't know what is wrong with my listserver mail. I didn't change any of the commands and I feel lost. A whole day without any mail!!! HELP!!!

Janine ========================================================================= Date: Sat, 2 May 1998 22:36:10 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Thornq <Thornq@AOL.COM> Subject: Just a little something! Mime-Version: 1.0 Content-type: multipart/mixed; boundary="part0_894162970_boundary"

This is a multi-part message in MIME format.

--part0_894162970_boundary Content-ID: <0_894162970@inet_out.mail.aol.com.1> Content-type: text/plain; charset=US-ASCII

Hello everyone!

My sister forwarded this to me and I thought you all would like it. Hope it brings a smile to your faces, like it did mine.

<A HREF="http://www.t-one.net/~innkeeper/angels.htm">Special Angels</A> <-----click on blue and enjoy.....:-

Lynn Thornquist

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Return-Path: <> Received: from relay17.mx.aol.com (relay17.mail.aol.com [172.31.106.71]) by air06.mx.aol.com (v43.5) with SMTP; Sat, 02 May 1998 22:33:48 -0400 Received: from imo30.mx.aol.com (imo30.mx.aol.com [198.81.17.74]) by relay17.mx.aol.com (8.8.5/8.8.5/AOL-4.0.0) with ESMTP id WAA27942 for <Thornq@aol.com>; Sat, 2 May 1998 22:33:47 -0400 (EDT) Received: from localhost (localhost) by imo30.mx.aol.com (8.8.5/8.7.3/AOL-2.0.0) with internal id WAA07448; Sat, 2 May 1998 22:33:47 -0400 (EDT) Date: Sat, 2 May 1998 22:33:47 -0400 (EDT) From: Mail Delivery Subsystem <MAILER-DAEMON@aol.com> Subject: Returned mail: Host unknown (Name server: listserver.aol.com: host not found) Message-Id: <199805030233.WAA07448@imo30.mx.aol.com> To: Thornq@aol.com Auto-Submitted: auto-generated (failure) Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

The original message was received at Sat, 2 May 1998 22:33:23 -0400 (EDT) from root@localhost

----- The following addresses had permanent fatal errors ----- Apert@listserver.aol.com

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----- Original message follows -----

Received: from Thornq@aol.com by imo30.mx.aol.com (IMOv14.1) id QIXJa02449 for <Apert@listserver.aol.com>; Sat, 2 May 1998 22:33:23 +2000 (EDT) From: Thornq <Thornq@aol.com> Return-path: <Thornq@aol.com> Message-ID: <8e6b5b40.354bd774@aol.com> Date: Sat, 2 May 1998 22:33:23 EDT To: Apert@listserver.aol.com Mime-Version: 1.0 Subject: (no subject) Content-type: multipart/mixed; boundary="part0_894162803_boundary" X-Mailer: AOL 4.0 for Windows 95 sub 170

This is a multi-part message in MIME format.

--part0_894162803_boundary Content-ID: <0_894162803@inet_out.mail.aol.com.1> Content-type: text/plain; charset=US-ASCII

Hello everyone!

My sister forwarded this to me and I thought you all would like it. Hope it brings a smile to your faces, like it did mine.

<A HREF="http://www.t-one.net/~innkeeper/angels.htm">Special Angels</A> <-----click on blue and enjoy.....:- >>

Lynn Thornquist

--part0_894162803_boundary Content-ID: <0_894162803@inet_out.mail.aol.com.2> Content-type: message/rfc822 Content-transfer-encoding: 7bit Content-disposition: inline

Return-Path: <> Received: from rly-zb01.mx.aol.com (rly-zb01.mail.aol.com [172.31.41.1]) by air-zb03.mail.aol.com (v42.4) with SMTP; Sat, 02 May 1998 22:27:22 -0400 Received: from imo24.mx.aol.com (imo24.mx.aol.com [198.81.17.68]) by rly-zb01.mx.aol.com (8.8.5/8.8.5/AOL-4.0.0) with ESMTP id WAA19210 for <Thornq@aol.com>; Sat, 2 May 1998 22:27:58 -0400 (EDT) Received: from localhost (localhost) by imo24.mx.aol.com (8.8.5/8.7.3/AOL-2.0.0) with internal id WAA29274; Sat, 2 May 1998 22:27:58 -0400 (EDT) Date: Sat, 2 May 1998 22:27:58 -0400 (EDT) From: Mail Delivery Subsystem <MAILER-DAEMON@aol.com> Subject: Returned mail: Host unknown (Name server: listerv.aol.com: host not found) Message-Id: <199805030227.WAA29274@imo24.mx.aol.com> To: Thornq@aol.com Auto-Submitted: auto-generated (failure) Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

The original message was received at Sat, 2 May 1998 22:27:51 -0400 (EDT) from root@localhost

----- The following addresses had permanent fatal errors ----- Apert@listerv.aol.com

----- Transcript of session follows ----- 550 Apert@listerv.aol.com... Host unknown (Name server: listerv.aol.com: host not found)

----- Original message follows -----

Received: from Thornq@aol.com by imo24.mx.aol.com (IMOv14.1) id 2MXMa02743 for <Apert@listerv.aol.com>; Sat, 2 May 1998 22:27:50 +2000 (EDT) From: Thornq <Thornq@aol.com> Return-path: <Thornq@aol.com> Message-ID: <d8158762.354bd628@aol.com> Date: Sat, 2 May 1998 22:27:50 EDT To: Apert@listerv.aol.com Mime-Version: 1.0 Subject: Fwd: Special Angel ....this is so great.....:-) Content-type: multipart/mixed; boundary="part0_894162471_boundary" X-Mailer: AOL 4.0 for Windows 95 sub 170

This is a multi-part message in MIME format.

--part0_894162471_boundary Content-ID: <0_894162471@inet_out.mail.aol.com.1> Content-type: text/plain; charset=US-ASCII

Hello everyone!

My sister forwarded this to me and I thought you all would like it. Hope it brings a smile to your faces, like it did mine.

<< <A HREF="http://www.t-one.net/~innkeeper/angels.htm">Special Angels</A> <-----click on blue and enjoy.....:- >>

Lynn Thornquist

--part0_894162471_boundary Content-ID: <0_894162471@inet_out.mail.aol.com.2> Content-type: message/rfc822 Content-transfer-encoding: 7bit Content-disposition: inline

From: JEFSUEKAJA <JEFSUEKAJA@aol.com> Return-path: <JEFSUEKAJA@aol.com> To: scs@acun.com Cc: Thornq@aol.com Subject: Fwd: Special Angel ....this is so great.....:-) Date: Sat, 2 May 1998 22:01:56 EDT Organization: AOL (http://www.aol.com) Mime-Version: 1.0 Content-type: multipart/mixed; boundary="part1_894162471_boundary"

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Hi guys, now it is my turn to send something. Hope you like it. My food delivery guy sent it to me. Lots of Love, Susan

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From: Schwans2 <Schwans2@aol.com> Return-path: <Schwans2@aol.com> To: JEFSUEKAJA@aol.com Subject: Fwd: Special Angel ....this is so great.....:-) Date: Sat, 2 May 1998 19:35:20 EDT Organization: AOL (http://www.aol.com) Mime-Version: 1.0 Content-type: multipart/mixed; boundary="part2_894162471_boundary"

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ck out

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From: PUNKIN7743 <PUNKIN7743@aol.com> Return-path: <PUNKIN7743@aol.com> To: PHANTOM790@aol.com, Frenchy230@aol.com, ChipG56@aol.com, AlanL4291@aol.com, Schwans2@aol.com, Joefrombos@aol.com, Cabat713@aol.com, Ginagmb@aol.com, Wemas@aol.com Subject: Fwd: Special Angel ....this is so great.....:-) Date: Mon, 27 Apr 1998 07:28:50 EDT Organization: AOL (http://www.aol.com) Mime-Version: 1.0 Content-type: multipart/mixed; boundary="part3_894162471_boundary"

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From: Polander02 <Polander02@aol.com> Return-path: <Polander02@aol.com> To: Lil3Bit@aol.com Cc: HPIKE1@aol.com, PUNKIN7743@aol.com, j.rob@excitemail.com, AbleMed@aol.com, JERSEYBOB@aol.com, DAVP99@aol.com, Padabro@aol.com Subject: Fwd: Special Angel ....this is so great.....:-) Date: Mon, 27 Apr 1998 05:50:51 EDT Organization: AOL (http://www.aol.com) Mime-Version: 1.0 Content-type: multipart/mixed; boundary="part4_894162471_boundary"

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VERY NICE.....ENJOY.....

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From: HASANAK025 <HASANAK025@aol.com> Return-path: <HASANAK025@aol.com> To: Polander02@aol.com Subject: Fwd: Special Angel ....this is so great.....:-) Date: Mon, 27 Apr 1998 03:13:26 EDT Organization: AOL (http://www.aol.com) Mime-Version: 1.0 Content-type: multipart/mixed; boundary="part5_894162471_boundary"

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:-)

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From: NETWIFE103 <NETWIFE103@aol.com> Return-path: <NETWIFE103@aol.com> To: SirOtot@aol.com, HASANAK025@aol.com, JimmyOz@aol.com, Herbie359@aol.com, Tizmezatu@aol.com, Juliet7013@aol.com, CCathy01@aol.com, SasRn@aol.com, TAS1960@aol.com, Humoriam@aol.com, GRTHunter2@aol.com, OldstyleBr@aol.com, WVBEAR263@aol.com, CwboyzRule@aol.com, Ert5000@aol.com Subject: Special Angel ....this is so great.....:-) Date: Mon, 27 Apr 1998 02:03:43 EDT Organization: AOL (http://www.aol.com) Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

<A HREF="http://www.t-one.net/~innkeeper/angels.htm">Special Angels</A> <-----click on blue and enjoy.....:-) Andrea

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--part0_894162970_boundary-- ========================================================================= Date: Sat, 2 May 1998 23:15:36 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Frank & Annette Contrino <contrino@BUFFNET.NET> Subject: Re: Many things..... Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

>Next question....I want to know at what ages everyone's kids started talking.

Nicole started talking about 18 months and has been getting speech therapy ever since. It does help. She's still behind in her ability to speak intelligibly, but she understands real well (too well sometimes).

>I understand that Apert children talk late, and Andrew being a boy and the >first & only child doesn't help, but part of me is worried. We are trying a >couple of signs to speed it along and he understands a ton!!!! Should I be >worried, or just let it take its course? I'm getting so much flack from my

If you feel the need have an evaluation done and, if they recommend it, get speech therapy. Then it's not you worrying, it's a professionals recommendation. Kids do things at different paces but we're glad we got Nicole evaluated and started on speech. She'd be further behind than she is without it.

> >Another thing I'm a little worried about has to do with me. I think I'm too >protective and don't let him try things because I'm afraid he will hurt >himself. I don't think I do it because of the Apert, but I don't know. Maybe >I'm just an over protective mother. And what do you do about little kids >saying things about Andrew. I was at Chuck E Cheese a couple of weeks ago, >and a little girl said to her friend "Look at his hands, aren't they weird. I >wonder what is wrong with him." I didn't say anything and try to explain why >Andrew's hands are that way to educate them. Did I do the right thing or >should I have said something? I don't think their parents were around. >

Let him be a little boy. Kids have to discover, they're gonna get bumps and bruises. You cringe when they crack their little heads, but it's bound to happen. Sometimes you need to be nearby just in case, but you need to let him try. I worry when I watch Nicole climb up the ladder on a slide or stuff like that because I know her hands are weak, but she manages to do it. We try to encourage her to do the same thing the other kids do.

If you're comfortable with it, you can educate kids, and adults, when need be. Kids are going to say whatever comes to mind since they haven't learned that that is not always acceptable. Then there's the braindead adults, they're worse. We had a lady ask us if Nicole's cast was a puppet! Then there was the lady who said, "how could they let that little girl break her arm?". When that happens, I could do one of three things... 1. Choke them to death (preferred solution, but never taken) 2. Educate them about Nicole's condition 3. Ignore them

Two is what I usually choose to do. However, some people are beyond educating so you just have to ignore them. Usually, you have a chance with a young kid because they're mainly just curious.

Frank Contrino contrino@buffnet.net ========================================================================= Date: Sat, 2 May 1998 21:31:07 -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: pictures MIME-version: 1.0 Content-type: text/plain; charset="us-ascii"

I received Ceci's picture today. She looks like a little doll in her red coat and hat. You were blessed with a beautiful angel!(I know you already know that) I hope you will get Daryl's picture soon! God Bless and you are still in our prayers!

Denise Graham ========================================================================= Date: Sat, 2 May 1998 21:33:13 -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: optic nerve pressure MIME-version: 1.0 Content-type: text/plain; charset="us-ascii"

Diana, Does Derek have a shunt. If he does have pressure a shunt could help things without having to do the craniofacial surgery early. Just a thought. Good luck and God Bless!

Denise Graham ========================================================================= Date: Sat, 2 May 1998 23:36:15 -0400 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: foster <foster@ICONTECH.COM> Subject: Drinking a bottle Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

Hello to everyone. Hope today find everyone well and happy. I am writting to tell you about how our Billy for the first time in his 14 month of his life was able to drink 3 ozs. of juice from a bottle. This may not seem so amazing but for us it is something we thought we would ever see. As some of you aready know Billy has a feeding button and was never able to suck a bottle or a pacifier. He now eats by mouth and has drank from a sippy cup and more recently drink with a straw. But, today we just for the heck of it gave him a bottle of juice and he went crazy. He loved it and did very well. Why let him drink a bottle at this stage? Because it is good for him to learn to suck and swallowing at the same time. Also, it helps him to use his lower jaw which he lets hang open alot. He also dribbles alot because he doesn't swallow enough. Being able to suck will help him in many ways. He also has no teeth yet so letting him have a bottle for a few months should not be a problem. We never thought we would see him enjoy this basic step which others take for granted. This is one more thing he has done that amazes us. Thought some of you would enjoy hearing about this great step.

We have received pictures of Emily and Ceci and they are beautiful. We were very happy to begin an album for Billy of all of your wonderful children and of all of you great adults as well.

Just wanted to share these things tonight because tomorrow is basketball play offs and our famlily are NBA fans. My husband and three of the girls are for the Bulls. I happen to like Utah Jazz. I am all alone on that one. We have one NY Knicks fan and one Miami Heat fan. Billy is undecided as of now but, I will work on him as he gets older to see if I can sway he a little.

Well, Bye for now

Karen (PA) ========================================================================= Date: Sat, 2 May 1998 23:59:11 +0000 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "J. G. Lindamood" <chanan8@JUNO.COM> Subject: Re: Drinking a bottle

Congratulations Billy! I know how significant these milestones are! I'm gald to hear he is making progress!!

I am thinking of those with pending surgeries. Esspecially Nichole. Please to know she is feeling better.

Two more days until freedom and then I will begin my "wealthy" future on the 8th! Hum.. one isn't wealthy by just money... I guess I started my wealthy future when I met all of you!

Joanne

_____________________________________________________________________ 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: Sun, 3 May 1998 09:45:45 -0400 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jack and Raquel <jara1@BELLSOUTH.NET> Subject: Drinking a bottle MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

Karen, thats great I'm really glad to hear that things are looking up...Hey as far as the bottle thing goes (please no one yell at me) we have a 3 1/2 year old Erica that still sometimes drinks her milk out of a bottle. Sometimes that's the only way we can get her to drink. Unlike her little sister Nicole, Erica is not too fond of eating, she prefers playing or watching T.V. so whatever we can do to feed her we'll do, hey whatever works...Anyway I very much doubt that at age 16 she'll be going out with her boyfriend with one hand holding his and another holding a bottle?

Talk to you later....

P.S. GO HEAT!!!!

Raquel Miller in sunny south Florida... ========================================================================= Date: Sun, 3 May 1998 10:01:38 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Yonstein <Yonstein@AOL.COM> Subject: Re: Drinking a bottle Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Dear Karen:

Good morning. Congrats to Billy. Like you said, it may not seem like a big deal to some, but it truly is. To be able to do something that they were not able to do is always a big deal. You are right about the sucking. It is important for him.

I am very happy for you guys. Enjoy your games today

Janine ========================================================================= Date: Sun, 3 May 1998 10:04:04 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Yonstein <Yonstein@AOL.COM> Subject: It's working Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Thank you to all of you who responded to my test. I got the private mail, but the listserver mail did not work. When I got up this morning it was there. I think some of it was missing, but I don't know.

I am glad, too, because I got the angels, thanks Lynn. Glad to hear Nicole is feeling better. Looking forward to more photos.

Joanne, hope the birds are ok. Enjoy your time off.

Best wishes to everyone.

Janine Krebs ========================================================================= Date: Sun, 3 May 1998 11:03:03 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: LUVS2WRTE <LUVS2WRTE@AOL.COM> Subject: Re: Drinking a bottle Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

GO BULLS!!!!! (I'm originally from Chicago.)

It may be Jordan's last year.

-Andrea ========================================================================= Date: Sun, 3 May 1998 11:03:55 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: LUVS2WRTE <LUVS2WRTE@AOL.COM> Subject: Re: Drinking a bottle Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

I am so glad to hear about Billy's accomplishment. Cheers!!!

-Andrea ========================================================================= Date: Sun, 3 May 1998 11:06:17 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: LUVS2WRTE <LUVS2WRTE@AOL.COM> Subject: Re: Pictures/eyes Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

In a message dated 98-05-03 02:33:53 EDT, you write:

> Its really odd how our kiddos having the same syndrome still have > different symtoms and requirements.

I find it so interesting. Nicole, like all others, will be in my prayers.

-Andrea ========================================================================= Date: Sun, 3 May 1998 15:13:30 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: Thornq <Thornq@AOL.COM> Subject: Re: Many things-enlarged ventricles, CT scans Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Resa,

Thank you for your e-mail. That is exactly what our neurosurgeon said. I couldn't have written it better myself. Dr. Scott's opinion is that everyone is different, like Jenn mentioned some time ago. Andrew has only had one CT Scan, and we have an upcoming appointment with him. I asked the nurse if there were any notes as to whether or not Dr. Scott wanted another, but there weren't any. She advised me to withhold food and drink from him four hours before, just in case. That's an awfully long time to keep food from Andrew for a "just in case". Don't you agree? I think I would like one done. Should I just demand another? Because I'm nervous about it and want to just be sure that everything is okay. But then again, why put Andrew under if I don't have to. What do you think, or anyone else for that matter? Thanks!

Lynn ========================================================================= Date: Sun, 3 May 1998 15:26:39 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: Thornq <Thornq@AOL.COM> Subject: Re: Drinking a bottle Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

CONGRATULATIONS TO BILLY!!!! What a wonderful thing, and don't worry about Billy having a bottle at this age. Andrew didn't have much problems when he was born except he didn't know how to breathe while sucking, but he adapted quickly. Still to this day he loves his bottle and he is 20 months. My feeling is, he has had a rough start and one little vice isn't bad. At least he doesn't take a bottle in the middle of the night anymore. Glad things are going your way.

Lynn ========================================================================= Date: Sun, 3 May 1998 16:16:03 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jenngram <Jenngram@AOL.COM> Subject: Re: walking Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

in the opposite situation here..Jordan will stand and roll adn crawl for hours on end..try and get him to sit..NO WAY..I think its a balance issue ad not having proper balance to sit AND be active..perhaps the same is true of those not wanting to stand..I know I've come to realize that if Jordan can't play then he won't sit..or rather he won't sit STILL!!!!!..but he can do it, if he wants..and ONLY if he wants!!!

Jenn(Tampa/St. Pete) ========================================================================= Date: Sun, 3 May 1998 16:26:21 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jenngram <Jenngram@AOL.COM> Subject: Re: Pictures/eyes Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Thinking of what Raquel said, I was talking w/ my mom and she was saying how its so hard to distinquish what is Apert related and what might just be a problem a kid would have anyway. We feel ver lucky that Jordan doesn't have any eye problems or sweating issues/ body temp issues, but on the other hand he has GI reflux..our biggest issue has been that and feeding..not Apert related surgeries believe it or not. I guess this goes hand in hand w/ development. There is such a wide range of whats age appropriate development..and I sometimes wonder if Jordan would be this stubborn about his skills even if he wasn't born w/ Apert..but even though he sometimes is on the "late" end..he always falls within normal limits..of course I ALWAYS knew he was normal!!!!!! hmmmm...just some food for thinking

Jenn(Tampa/St. Pete) ========================================================================= Date: Sun, 3 May 1998 17:54:24 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: LUVS2WRTE <LUVS2WRTE@AOL.COM> Subject: Career question Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Hello group.

I have a career question. I would like to go into a careet that involves a great deal of doing research on birth defects, dieases, cancer, etc. Does anyone know what I would have to major in?

I have been doing some research and it seems the more I do, the more confused I get. So far, I've read that it can be public health, nursing, epidemiology or pathology. Can anyone help me clear this out?

Tomarrow I'm going to check out my college library and career center. I thought I also give you guys a try.

Hope all is well- Andrea ========================================================================= Date: Sun, 3 May 1998 22:36:32 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: ChMathis <ChMathis@AOL.COM> Subject: Re: Drinking a bottle Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Congratulations to Billy! Zoey's milestone was with babyfood. I've tried since she was about 6 months old to feed her baby food, and was upset at first, but just kept trying gently. One day, I put the spoon to her mouth (she was either 13 or 14 months old) and she ate the whole bottle. I think I cried. And don't tell anyone, but she also likes Oreo cookies! It was hard for me not to resent parents of children who passed their milestones on time, but the way I've looked at it lately, was that even though my Zoey takes longer, she's still passing them, and I can still enjoy them the same. Sincerely, Christina, Zoey and Tia (Mathis) in Humid South Texas! ========================================================================= Date: Mon, 4 May 1998 22:03:44 +1200 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Howard & Ann <howrdnan@IHUG.CO.NZ> Subject: The Great Photo Exchange Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

Kia Ora

Our collection goes out tomorrow. If you haven't received your copy within 2-3 weeks please let us know.

Except for Christine that is - when Howard is allowed to get to the computer to do the Network Newsletter we will send your copies out with that.

Regards, Ann NZ ========================================================================= Date: Mon, 4 May 1998 16:10:35 -0400 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: foster <foster@ICONTECH.COM> Subject: Good Luck Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

Wanted to wish Nicole the very best on her up coming surgery. Our thoughts and prayers will be with you and your family on the 7th. And also our best to anyone else who is having surgery in the up coming weeks. Hope everyone is well this Monday.

Daryl's picture came today.He reminded me of a little boy named Jerry that I used to take care of at the day care that I worked at. It is amazing how much they look alike. Both of them are cuties.

Raquel,What happened to the Heat?(HAHA) I think they would have done better if Mr Morning had more self contol ========================================================================= Date: Mon, 4 May 1998 17:05:52 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Thornq <Thornq@AOL.COM> Subject: Pictures!! Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Hello everyone!

I'm hoping this e-mail reaches everyone having a good day.

I received three pieces of fun mail today. I got Ceci's picture today, what a sweet angel she is. I absolutely love her red outfit, exactly how I would probably dress my little girl. I also received Nicole and Daryl's pictures. What cuties they are!!!!! I love those beautiful eyes on Nicole, she is going to be a heartbreaker. When I say Daryl's picture at 6 months, I couldn't believe how much he looks like Andrew used to. Denise, what sutures were fused on Daryl's head? His hands look like Andrew's used to as well. Are they type 1? I am just so amazed how much their two faces look alike (before and after). Just wait until you see Andrew. I will send you a before and after picture. You have a beautiful family Denise.

I got a picture book today, instead of putting the pictures in a scrapbook. It was perfect and I couldn't pass it up. The front has some flowers, birds, and butterflies on it and it says, "A Miracle of God's Love". I thought it was perfect for all our little angels. I'm going to put little descriptions next to each picture.

Thank you for all the wonderful pictures everyone! This is so much fun. It's nice to go to the mailbox for once and not just see bills staring back at me.

Here's hoping everything goes well for Nicole on her upcoming surgery. I will be saying a special prayer on the 7th. I have a special something that I say my prayers on. Talk to everyone later. Love to all!

Lynn Thornquist ========================================================================= Date: Mon, 4 May 1998 17:32:32 -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 and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Robin MacDonald <macdonal@GOLDEN.NET> Subject: Florida MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

After being in Florida in the summer, I quite agree that it is a bit of a sauna. I am quite agreeable to change the destination within the sunshine state. All things considered equal, sounds like we can do more things with less funds as well. ========================================================================= Date: Mon, 4 May 1998 18:30:09 -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: Allison Bledsoe <anbledsoe@USA.NET> Subject: pictures Mime-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

Hi everyone!

My mom wanted to let the Kilners, the Jeffersons, the Krebs, and the Grahms know that she received their pictures.

Also, my husband's place of work is upgrading everyones computers and selling the older models to the employees. Since there are a limited number of computers, they are having a drawn. On Thursday, we will find out if our name was drawn. I really, really hope it is, so I can communicate with all of you at home. It is really hard to do this at work sometimes. My mother would also be able to talk with everyone.

Talk to everyone later,

Allison

____________________________________________________________________ Get free e-mail and a permanent address at http://www.netaddress.com/?N=1 ========================================================================= Date: Mon, 4 May 1998 16:11:16 -0700 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Robyn Johnston <robyn@ORDATA.COM> Subject: Re: Pictures Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

Thanks for sharing this with us. Adorable pictures! What a cutie! Good luck getting ready for Nicoles surgery. You will be in our prayers! Also thanks for the latest list of addresses - it was useful!

Hugs, Robyn Eugene, OR

>I just mailed off an HTML version of the current list of folks on the >picture exchange to Don.

There's >a photo of the balloons Nicole set free in honor of Ceci. Check it out! >http://www.buffnet.net/~contrino > >Frank Contrino ========================================================================= Date: Mon, 4 May 1998 19:42:24 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: ChMathis <ChMathis@AOL.COM> Subject: Re: Pictures!! Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

I also received Ceci's pictures today. My first picture, I'm so excited! She's beautiful. I can't wait to see my Zoey grow and grow! I am going to get some pictures of Zoey done as soon as she's well enough. Zoey should be coming home from the hospital tomorrow, she's driving all the nurses crazy! (Smile) Christina, Zoey and Tia Mathis The now extremely DRY San Antonio ========================================================================= Date: Mon, 4 May 1998 20:21:12 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: GSieb91515 <GSieb91515@AOL.COM> Subject: Re: picture list-another try Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Robyn,

I didn't receive the attachment either. Am I missing something?

Brenda ========================================================================= Date: Mon, 4 May 1998 20:33:03 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: GSieb91515 <GSieb91515@AOL.COM> Subject: Re: Pictures/eyes Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

We also received Daryl's and Ceci's and today received Nicoles. Thanks so much!

Ceci reminded me of my daughter Melissa when she was that age with her winter coat we bought for our trips home to Maryland. What a cutie, as they all are. Thanks also for Emily's photo. She bites on the end of her glasses like I sometimes do.

I've had the reprints made and now just need to get the envelopes done. It will probably be next weekend before I can get back to it.

Thanks everyone. I love that we are doing this photo exchange and I think the kids will really appreciate it when they are older.

Brenda Houston ========================================================================= Date: Mon, 4 May 1998 16:36:47 -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: "Christine L. Clark" <apertnet@IX.NETCOM.COM> Organization: Apert Support & Information Network Subject: Re: The Great Photo Exchange MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

> > Except for Christine that is - when Howard is allowed to get to the computer to do the Network Newsletter we will send your copies out with that.

Hope he has better luck thsan I hasve getting a newsletter out. I'm lucky if I can wade through my office to find the computer lately, hah!! Maybe we should have a bet on who gets it done first!!

Take care.

Christine > Regards, > Ann > NZ ========================================================================= Date: Mon, 4 May 1998 20:46:20 +0000 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "J. G. Lindamood" <chanan8@JUNO.COM> Subject: Treat!

Hello Family!

What a treat! I received not one, not two, but THREE pictures today! And that was all!! No bills, no junk! Just fun mail!!!

Seth is growing into a fine young man! He's not the little squirt I met how many years ago?? Gee! I feel OLD!

Daryl is a cutie indeed! The whole family looks wonderful!

and Ceci will forever hold a place in my heart! Although I never met her, I know by the look in her eyes she was a happy, loving angel!

Thanks to all of you!

Trying to get a family photo arranged. I'm getting my hair cut this week, ( don't want the birds to look better than me!!) so, maybe by Friday I should have something to mail!

Tomorrow is my last day at my old job! I have felt the pangs of leaving my friends I've known for a year, knowing I will probably never associate with them again. I try to concentrate on where I am going and the significance of my work. If you all haven't figured it out yet, my emotions get the better of me especially with relationships. I need to learn to get it under control!! ========================================================================= Date: Mon, 4 May 1998 20:48:49 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: GSieb91515 <GSieb91515@AOL.COM> Subject: Re: Drinking a bottle Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Raquel and Jack-

Just wanted to wish you all well for this Thursday and know that Nicole will be in our prayers.

Good Luck-

Brenda ========================================================================= Date: Mon, 4 May 1998 21:26:30 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: Unclbennie <Unclbennie@AOL.COM> Subject: desubscribe Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

desubscribe ========================================================================= Date: Mon, 4 May 1998 22:27:13 +0000 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "J. G. Lindamood" <chanan8@JUNO.COM> Subject: Just to check

Hello!

I have just completed creating a database of all the names for the Great Photo Swap. I have 42 names so far. Is this accurate compared to your list? Hope I didn't miss someone.

Joanne, It's sunny and warm! Finally! Planning a party tomorrow!! In Ohio, you all are invited! :-) ========================================================================= Date: Mon, 4 May 1998 22:42:08 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: Thornq <Thornq@AOL.COM> Subject: Re: Just to check Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Joanne,

I only have 34 names and addresses. I must be missing quite a few and I don't want to leave anyone out. Could you please let me know who you have or could anyone else out there send me a revised list. Thanks so much.

Lynn Thornquist ========================================================================= Date: Mon, 4 May 1998 22:53:20 -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: pictures/answering questions MIME-version: 1.0 Content-type: text/plain; charset="us-ascii"

I received Nicole Miller and Seth Johnson's pictures today. It is so much fun looking foward to going to the mailbox instead of dreading what bills are there.

Dori, I can't beleive how much Seth has grown. He is so handsome. You all know how hard it is to get a comment out of our husbands sometimes. I was showing Chad the pictures and he said, "He's handsome." short but sweet. He also thought Nicole had beautiful eyelashes!

Lynn, All of Daryl's sutures were fused except his saginal. That is why his head was so tall at birth and grew even taller. His hands were the rosebud (Type III) hands. He had one continuous nail except for the pinky.

Hope all is well with everyone! God Bless!

Denise Graham ========================================================================= Date: Mon, 4 May 1998 22:16:11 -0700 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Robyn Johnston <robyn@ORDATA.COM> Subject: Re: picture list-another try Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

>Robyn, > >I didn't receive the attachment either. Am I missing something? > >Brenda

I'm not sure, but I do not think it was sent somehow. Marianne? did other people get it? Maybe it is something we could use in the future for future mailing lists. Wouldn't it be fun to do this once a year? I know it is a lot of mailing, but it is so fun receiving picture updates on everyone.

BTW - thanks Kilners and Millers. Your pitures arrived! They, of course, are both precious pictures. I should be getting Brenna's out by the end of the week.

Hugs, to everyone Robyn Johnston Eugene, OR

At 08:21 PM 5/4/98 EDT, you wrote: > ========================================================================= Date: Mon, 4 May 1998 22:24:53 -0700 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Robyn Johnston <robyn@ORDATA.COM> Subject: Re: Treat! Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

>Tomorrow is my last day at my old job! I have felt the pangs of leaving >my friends I've known for a year, knowing I will probably never associate >with them again. I try to concentrate on where I am going and the >significance of my work.

Joanne, I kinda know how you feel. I just quit my part time job for good too, last Friday. I feel kind of like a part of my history just ended. I worked for almost 14 years at this place! I still don't think it has fully sunk in yet. I have actually been on leave without pay for the past 6 months. Maybe I will go back to work when the kiddo's are a little more independant.

Well just thought I'd share :-) Good luck getting ready for your new job! Hugs, RObyn ========================================================================= Date: Tue, 5 May 1998 07:03:25 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: ize <ize@TACOMA.CEATLABS.OKSTATE.EDU> Subject: Good Luck MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

Raquel and Jack,

We wish you good luck with Nicole's surgery.

The Ize's. ========================================================================= Date: Tue, 5 May 1998 08:19:33 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jenngram <Jenngram@AOL.COM> Subject: Re: Pictures/eyes Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

OHHHH, I received Ceci, Colin, and Seths pictures..such cuties!! And that Seth..what a creative little guy!!!! I can't wait to get more!!

Jenn(Tampa/St. Pete) ========================================================================= Date: Tue, 5 May 1998 14:40:37 -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: Steve & Stacy <sshb@EROLS.COM> Subject: pictures MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

Please add: Steve and Stacy Bell (Brooke Leann) 8122 New Cut Rd. Severn, MD 21144

Sorry we are asking to be added at such a late date. We really would like to be added to the picture exchange.

Thanks, Steve, Stacy, Holly and Brooke The Bells ========================================================================= Date: Tue, 5 May 1998 14:34:40 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Carbide Tech <ruth@CARBIDETECH.COM> Subject: Re: pictures MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit

Hi everyone out there!

Ruth Contreras (Kris' Mom) here. Just wanted to say Hi and to share something with all of you. Kris is in Jr. Hi. (yes, i know) and she is in what we oldies used to call Home Ec. They call it "Life Management Skills". Anyway, for their final project for the year the teacher sent a note home saying the kids needed, lace, beads, 1-1/2 yard of any type of material (that the student liked) and a 1" binder and last they needed a little creativity and little bit of love to make their very special photo album. When I read it I was almost in tears, I thought "Wow, This is really going to be a special album" We started getting our pictures the following day. Isn't that the neatest thing you heard today? I guess it's one of those things where you had to be there, Huh?

I wrote to Claudia today, ( I think her sisters name is ViVi) and I wrote to her in spanish so that she can feel free to communicate to me. I'm real excited! Because her little sister is 14 years old, just like Kris.

Well, Kris is scheduled for surgery on June 4. @ Tx. Children's Hosp. in Houston. She is fighting a cold or allergies right now. The Dr. already told us, small sniffle and we are definitely cancelling. So I would appreciate your prayers. She was nervous at first, but after this week-end she's doing much better. This past week-end our area special olympics was holding its area 4 track meet, and Kris won the silver metal in the 100 meter dash and the gold in the 4x100 relay. It was so awesome! I wish all of you guys would have been there! Her team did soooooo well! And I've got it on tape! She took her medals to school on Monday. She was so proud of them. If your area has special olympics, I urge you to check it out. I think you have to be a certain age, but the self-esteem that this kids get from the games is just out of this world!

Anyway, thanks for putting up with my long letter, But my mother taught me to share, and thats what I wanted to do.

Adios, Amigos, God Bless!

Ruth > From: Steve & Stacy <sshb@EROLS.COM> > To: APERT@LISTSERV.AOL.COM > Subject: pictures > Date: Tuesday, May 05, 1998 1:40 PM > > Please add: Steve and Stacy Bell > (Brooke Leann) > 8122 New Cut Rd. > Severn, MD 21144 > > Sorry we are asking to be added at such a late date. We really would > like to be added to the picture exchange. > > > Thanks, > Steve, Stacy, Holly and > Brooke > The > Bells ========================================================================= Date: Tue, 5 May 1998 18:55:51 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: ChMathis <ChMathis@AOL.COM> Subject: Re: Treat! Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Hello everyone! I received Nicole and Daryl's pictures today, I'm so excited! They are so cute! I can't wait to send Zoey's out. I just went and ordered reprints of some cute pictures today, because I couldn't stand it anymore, I have to send hers out. She's still in the hospital, maybe tomorrow is what I'm told (she'll go home). It's frustrating, but I have been learning patience, and it's paying off. Zoey's hands look alot like Daryl's. I'm curious, Denise, if the surgeons are telling you how many fingers they think he'll end up with. I'm still upset that our surgeon's are telling me only three, maybe four. She uses what she has right now VERY well, so I guess I'm not too upset. Zoey manages very well, to get into EVERYTHING, just like a baby who has all ten. Good night, everyone, I'm off to the hospital! Christina, Zoey and Tia Mathis in the still dry Southern Texas ========================================================================= Date: Tue, 5 May 1998 20:52:23 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: DnJJenner <DnJJenner@AOL.COM> Subject: Pictures... Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Hello everyone.... just a note, I feel so silly, I can't belive I did this... hahahaha well I started filling out enevlopes for the pictuers and all that fun stuff, I got 3 pictures in the mail, I sent back to those 3 and sent out either 2 or 3 more with it, and I can't remeber who now... I got 4 more today I was so excited, and glad because one went to the man next door. Oh My all these babies (yes I know some are big, but still our babies the same) are just soooooo cute!!!! some we look at and say, boy that looks familiar! <smile> Courtney is loving her photo album, she picked out her own little book this weekend at the store, and now we are filling it. Oh yes one more note, we ran out of pictures so we are scanning them and then pritning them out on a laser printer... I thought that would be ok, since they are going in an album anyway... :) Take-care oxoxoxooxoxox always the Jennerjohns ========================================================================= Date: Tue, 5 May 1998 21:01:39 -0400 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jack and Raquel <jara1@BELLSOUTH.NET> Subject: Nicole's Surgery MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

Hello everyone.....

First of all I want to thank all of you for the well wishes. But Nicole's surgery has been postponed for now, it will not take place on Thursday the 7th. We went to her pediatrician last night and he us decided that it would be best that we wait until Nicki's cold gets better. Since her surgery at this time is elective he does not want to take any chances. A few more weeks is not going to make a difference. But of course we now have to get ourselves all worked up again for a new date. My mother in law was ariving today from PA, she will be taking care of Nicole post op once Jack and I go back to work. We cancelled her flight for now, because we need her to spend more time with Nicki post op. We are looking at the 22nd of May for the new date its up to the hospital, our plastic surgeons office will be calling in the a.m. tomorrow to see if they have an available op room, if they do then the 22nd it will be, it not it will have to wait until June. Plastic surgeon is booked next week, out of town for the first three days of the following week he is available on the 21st and 22nd. Then not available until June. So since I prayed before let it be your will, it was not Gods will that her surgery take place this Thursday, so I guess it will be at a later time. (Boy I made myself dizzy on that one) I'll keep you all posted.

We received Seths picture yesterday, handsome boy......

Talk to you guys later, I have to go and pick up my son from baseball practice...

Raquel Miller..... ========================================================================= Date: Tue, 5 May 1998 16:43:19 -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: "Christine L. Clark" <apertnet@IX.NETCOM.COM> Organization: Apert Support & Information Network Subject: Re: Sensory Intergaration MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

Mark Smith wrote: > > Hello everyone: > > A week or so ago I posted a message in reference to Sensory Integration.

I'm filtering through 800 e-mails to get caught up and ran across your posting (2 months late but I'm trying).

I have a booklet titled "Sensory Defensiveness in Children aged 2-12" if you would like a copy of it. It explains everything and gives directions on brushing and joint compressions.

The OT's have been using it (and have us using it) on Michelle for a couple of years. Some OT's really believe in it and others don't.

The theory with Apert children is that they have so many surgeries at such a young age and also have their hands wrapped up so much when they are developing that some of the natural development gets left out. Learning is very manipulative. This can cause low muscle tone and an underveloped nervous system.

The brushing is suppose to help desensitize the nerves and help the children to focus and help them to learn. It is done with a surgical brush and only takes about 2-3 minutes to brush the arms, hands, back and legs. The effects are said to last 2 hours and should be repeated as often as you can during the day for the best results. Most of us don't remember to run after our children with a brush every 2 hours though so even once a day is better than nothing. We have enough to do that we can't beat ourselves up for missing a few things, right!! Assign it to the teachers or support staff during the day in your IEP. We did.

E-mail me if you would like a copy of the information.

Christine ========================================================================= Date: Tue, 5 May 1998 21:02:46 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: GSieb91515 <GSieb91515@AOL.COM> Subject: Re: pictures Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Stacy,

We will be visiting our family in July. They live in Linthicum. Any chance we could get together while we are there? We will be sending out Jonathan's photos this weekend and will definately send one your way.

Brenda Houston ========================================================================= Date: Tue, 5 May 1998 21:06:40 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: Thornq <Thornq@AOL.COM> Subject: Re: pictures Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Ruth,

That is great news about Kris, and I think that her project couldn't have come at a better time. I have always wanted to go to a special olympics meet, but have never heard of any around where I am. Maybe I'm just not seeing or hearing about them and they are actually in Boston. Let me know if you know. No need to apologize for sharing because that is what we are here for and I love hearing about what is going on in everyone's life.

I will praying for Kris to get over her little cold so she may go for surgery. What is she going for? Talk to you later.

Lynn Thornquist ========================================================================= Date: Tue, 5 May 1998 17:13:58 -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: "Christine L. Clark" <apertnet@IX.NETCOM.COM> Organization: Apert Support & Information Network Subject: Re: Fantasy-focusing on tasks MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

> Hi. I am a Special Education teacher with an Apert 8 year old boy. I'm > finding that he spends a lot of time in a fantasy world. It is difficult to > get him to attend during instructional lessons

Michelle has the same problems. She needs constant refocusing and someone has to be right with her to do her assignments or she drifts away, buries herself in a book or does anything else but what she is suppose to do. Her teacher can walk away from her for awhile and look back to see her swinging scissors around each finger or stacking the felt pens as high as she can (little stinker, hah).

Some of it I think is because the task seems difficult for her. Most people don't want to do something that is difficult and our kids have more than their share to overcome. If she is interested in the subject or activity she doesn't need any extra motivation. For example, if you put a pencil in her hand to write she will immediately start to yawn and keep resting her head on her hand (this leads to LONG homework sessions, hah). Give her a computer to play with and she can remain focused for HOURS!!

It takes a lot of work. Since she likes computers, we had her evaluated for communication devices and the school has brought in an Apple e-mate for her to use since typing is easier than writing for her (the e-mate also has a drawing feature with a pen attachment). This way she can keep up with the other students in her class. My father bought her one to have at home so she can really learn to use it and have it for homework. We will work harder at the handwriting when her hand strength is more improved through her OT sessions.

Another thing we use in school is a reward system. If she completes the task she gets to go to the treasure chest, read a book or something that she enjoys. Tell her she will miss her recess if she doesn't finish and she zips right through her work, hah!

Michelle is in a full inclusion program. She is pulled for small group reading and math, has speech therapy 4 times a week - 25 min. each session (3 of them individual to work on articulation), Adaptive PE once a week for 40 minutes and Occupational Therapy twice a week for 60 minute sessions each. Use this as an example to show your program specialist what kinds