========================================================================= Date: Fri, 15 May 1998 00:51:38 -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> Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

Hello to everyone.Hope this warm evening find everyone in good spirits. I am sorry to hear that Sarah is again in the hospital and hope she is well very soon. I want to wish everyone well who are having surgery in the near future. I know of some like Jordan,Kayla,Emily and I wish them all God speed and hope the same for anyone I may have forgotten.

Billy is ready for his surgery on the 22nd. His pre admission was done yesterday and all seems well. He will also be getting his tubes in his ears this time. His doctor like others have told us that they will not be sure of him having all of his fingers when all is said and done and that they will know more after they do this first surgery. This is not easy to hear but it was made easier by remembering all of you guys out there who have shared your experiences with different hand surgeries and the fact that some of your children do not have all their fingers and that they are doing fine. Never the less it does make us sad and worried.

I want to say thanks to everyone for the pictures we are loving seeing them. Not only am I looking forward to them every day but, everyday when my daughters get home they ask if we got any new ones.Today we received a picture of a charming young man on a blue bike. Nick looks to be very happy with the bike and he looks good on it. It is nice to see him and know that the sky is the limit for our kids. And that their limitation are maybe not as bad and they seem.

Oh ya, Happy Birthday to Plum and I hope you enjoy yourself on Saturday.

Well, everyone stay well and I will let you all know how Billy does next week.

Karen(PA) ========================================================================= Date: Fri, 15 May 1998 16:22:26 +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"

Hi Joanne

Thanks for letting us know the photos arrived, I was beginning to think they had been dropped overboard from the plane! Everyone else is probably wondering what you mean by the "fish photo" - Joanne got an extra bit in her mail 'cos I felt like showing off!! It was the first fish Amy every caught, a Kahawai about 20cm long - the cat enjoyed it.

Take care of the head, Hugs Ann NZ

PS Have just read Judy's email and she has got hers too. Great, I can relax now.

At 09:26 PM 14/05/98 +0000, you wrote: >Hello, > >I have a smashing headache, telling you this to excuse my brief note. I >received a handful of photos today, including Amy's. Thank you very much. > She is a cutie! I love the fish photo! it was also nice to see dad >without the beard.. the photos on the net are with the beard. > >I better lay down. > >Joanne > > ========================================================================= Date: Fri, 15 May 1998 00:25:17 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: JReyesmich <JReyesmich@AOL.COM> Subject: Pictures Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Hi all

I recieved Morgan's, Roxy's,Sarah's, and Jacob's pictures, I put them all together and sent them to Vivi, I know she's going to be excited when she organizes all your wonderful kids pictures in her album.(king of enthusiastic)

You'll recieve her pictures at the end of this month. I'm so anxious to get a picture from that girl called Vivi because everybody is talking about her, and also her name es the same than my Vivi. I'm terrible sorry to ear about Sarah I hope She will be better soon.

Take care. Claudia Mastellone. ========================================================================= Date: Fri, 15 May 1998 21:50:54 +1000 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Carol & Jason <carolh@HOTKEY.NET.AU> Subject: Re: Sending Pictures MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

Hi!

The exchange of these pictures Ive been reading about sound great! Am I tooooo!!!! far to join in would love to give this a try. How do I go about it?? Help??

Carol (Australia)

> > > > > > > > ========================================================================= Date: Fri, 15 May 1998 08:32:14 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 Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

We received Vivi and Jacobs pics today. I just wanted to say that I wish someone would publish our kids pictures, so that when a new Apert baby is born the parents wouldn't be quite so frightened. I don't know about ya'll, but the lit. we got after Jordans birth was full of pretty scarey stuff. I know a lot of times the dramatic stuff gets published..but it often leads to the feeling of hoplessness. Of all the children and adult photos we have received....there has not been one that resembles what I saw the day after Jordans birth. These kids and adults are all very attractive, and seem to have quite the little personalities!!!!! My husband..who stays in his own little world of medicine most of the time, has gotten such a kick out of reading all the letters. Its the first thing he inquires about when he gets home..which is abig improvement over, "Wheres the remote?"

A good weekend to everyone..Next week seems to be a big surgical week..Good luck to everyone heading in. Keep us posted on outcomes..and we'll do the same!

Jenn(Tampa/St. Pete..I think thats where I am..who can see through this hazy mess) ========================================================================= Date: Fri, 15 May 1998 10:01:28 -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: Re: Pictures MIME-Version: 1.0 Content-Type: text/plain; charset="us-ascii" Content-Transfer-Encoding: quoted-printable

Hi, Claudia, I am the mother of Vivi Zhang----the other Vivi that everyone is talking = about. When I read your first posting I couldn't believe there is = another Vivi with Apert Syndrome because I didn't think Vivi is a common = name. I forwarded your message to my husband and he had to read it many = times to believe it! We are so excited to have found another Vivi! I = don't have your address on my mailing list. So would you please email me = your address so I can send you Vivi's pictures----yes, I will send you = some extra ones beside the one I sent to everyone else.=20 To those who haven't gotten Vivi Zhang's picture, we have run out. = Please be patient I will have more made to send you soon. So far we have = received picture of Morgan, Sarah L, Jacob, Emily, Daryl, Jordan, = Carmen Rae, Quentin, Amy(NZ), Mar Mar and Sarah Y, and they are all = such beautiful kids! Thanks for sending us the pictures, they are too = precious.=20

Qing

-----Original Message----- From: JReyesmich [SMTP:JReyesmich@AOL.COM] Sent: Friday, May 15, 1998 12:25 AM To: APERT@LISTSERV.AOL.COM Subject: Pictures

Hi all

I recieved Morgan's, Roxy's,Sarah's, and Jacob's pictures, I put them = all together and sent them to Vivi, I know she's going to be excited when = she organizes all your wonderful kids pictures in her album.(king of = enthusiastic)

You'll recieve her pictures at the end of this month. I'm so anxious to get a picture from that girl called Vivi because = everybody is talking about her, and also her name es the same than my Vivi. I'm terrible sorry to ear about Sarah I hope She will be better soon.

Take care. Claudia Mastellone. ========================================================================= Date: Fri, 15 May 1998 10:19:36 -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: Pictures MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit

I am home all day and I guess I need to feel I am doing SOMETHING productive (other than caring for Carmen Rae) so I have started answering everyone's requests! The address you are looking for is:

Claudia Mastellone 1310 40th Ave. #A San Francisco, CA 94122

Robin Hill Newnan, GA

---------- From: Qing Gong <qing@ASRC.CESTM.ALBANY.EDU> To: APERT@LISTSERV.AOL.COM Subject: Re: Pictures Date: Friday, May 15, 1998 10:01 AM

Hi, Claudia, I am the mother of Vivi Zhang----the other Vivi that everyone is talking about. When I read your first posting I couldn't believe there is another Vivi with Apert Syndrome because I didn't think Vivi is a common name. I forwarded your message to my husband and he had to read it many times to believe it! We are so excited to have found another Vivi! I don't have your address on my mailing list. So would you please email me your address so I can send you Vivi's pictures----yes, I will send you some extra ones beside the one I sent to everyone else. To those who haven't gotten Vivi Zhang's picture, we have run out. Please be patient I will have more made to send you soon. So far we have received picture of Morgan, Sarah L, Jacob, Emily, Daryl, Jordan, Carmen Rae, Quentin, Amy(NZ), Mar Mar and Sarah Y, and they are all such beautiful kids! Thanks for sending us the pictures, they are too precious.

Qing

-----Original Message----- From: JReyesmich [SMTP:JReyesmich@AOL.COM] Sent: Friday, May 15, 1998 12:25 AM To: APERT@LISTSERV.AOL.COM Subject: Pictures

Hi all

Take care. Claudia Mastellone. ---------- ========================================================================= Date: Fri, 15 May 1998 11:51:18 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 Chat Nite Tonite 5/18 Mime-Version: 1.0 Content-type: multipart/mixed; boundary="part0_895247478_boundary"

This is a multi-part message in MIME format.

--part0_895247478_boundary Content-ID: <0_895247478@inet_out.mail.aol.com.1> Content-type: text/plain; charset=US-ASCII

--part0_895247478_boundary Content-ID: <0_895247478@inet_out.mail.aol.com.2> Content-type: message/rfc822 Content-transfer-encoding: 7bit Content-disposition: inline

From: JPayne5634 <JPayne5634@aol.com> Return-path: <JPayne5634@aol.com> To: crouzon@u.washington.edu Subject: IRC Chat Nite Tonite 5/18 Date: Fri, 15 May 1998 11:50:41 EDT Organization: AOL (http://www.aol.com) Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Hey everyone!!

Tonite Is IRC Big Chat Nite!! So lets get acquainted with each other. Keep in mind that some people will show up a little later than time started. Please join us :)!!

Date to Meet on: May 15. 1998

IRC Server: ChatNet (Any locations)

Port Setting ; 6667

Channel #apertcrouzon

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

If you haven't had a chance to download the mIRC for Windows 3.x amd 95 or IRCle for Mac users. Please go to download them 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 AOL IM (Aol Instant Messenger) at

http://www.aol.com/aim

You don't need to be a member to join AOL IM and its free!!! AOL IM is an one to one online chat My AOL IM screename is Lauren 1273

Hugs Lauren

--part0_895247478_boundary-- ========================================================================= Date: Fri, 15 May 1998 13:06:13 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: JReyesmich <JReyesmich@AOL.COM> Subject: Re: Pictures Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

GEEE!!!

You sorprised me , It's so nice from you. Thank you. Qing, did you see how wounderful is this people!!!!

Claudia. ========================================================================= Date: Fri, 15 May 1998 11:28:38 -0600 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: baconsmith <bluenose@TELUSPLANET.NET> Subject: pic exchange list Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

Hello all. Does anyone have an updated list for the pic exchange? We finally have some pix of Peach (EvaJessie) to send out, but I am sure my list is incomplete. I have been saving envelopes from everyone and our album is filling out beautifully. Thank you all so much!

I wanted to say also a quick thank you to Seth for the ornitholestes (or whatever that dinosaur is!!) I put it in the album with his picture.

I've been reading silently here in Calgary and sending positive thoughts to you all heading for surgery. Will post an update later when I can say for sure that the pix are in the mail.

So if anyone has the most up to date list of addresses, please post again. Thanks.

Pat and the Peach (Tessier 4/5 facial cleft and now a big girl of FIVE!) aka the Bacon Smith Family in Calgary (finally getting some rain after a gorgeous sunny hot spring -- the blooms on the trees are just popping -- i LOVE this time of year) email to: bluenose@telusplanet.net IM: onlypeach shake and shake the ketchup bottle. none will come and then a lot'll ... unknown ========================================================================= Date: Fri, 15 May 1998 14:08:07 -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: Carmen Rae's Pictures MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit

Carmen Rae sent out her second batch of pictures today. This will make a total of 46 so far! We have 48 total on our list (not counting us, so I guess this makes 49 on the list????????) Unfortunately, she ran out of pictures AGAIN and still has two left to send. We put re-prints in yesterday and should have them back tomorrow. Carmen Rae says she will send them as soon as she gets them back. The two that have not been sent yet are: The Apert Support and Info Network (Christine Clark) and Claudia Mastellone. SORRY!!!! BUT, THEY ARE COMING SOON!

Anyway, if several days pass and you don't receive a picture of Carmen Rae, please let me know!!!!!! I think I have covered everyone, but you just never know!!!!!

So far Carmen Rae has received pictures from Andrew, Jordan, Morgan, Vivi Zhang, Roxy, Seth, Sarah LeCara, MarMar and Sarah Yenney, Emily, Quentin, Colin, Nicole Miller, Courtney, Brenna, and Ceci. I have to say I agree with Jennifer Graham regarding publishing our BEAUTIFUL and WONDERFUL children! I am so glad we did this picture exchange! I wait on the mail lady (I'm sure this is not what she prefers to be called) every day and just hope I will receive AT LEAST one more!

I also think the birthday card idea is a great one! I would love to participate in that also! Carmen Rae's birthday is the same as Zoey's, January 18.

Take care and keep those pictures coming!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Robin Hill ========================================================================= Date: Fri, 15 May 1998 13:13:39 -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: Judy Amerman <jamerman@UTI.COM> Subject: fun mail MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit

Hi all, More fun mail today. Nate Finch arrived with a letter from Nate himself. For some reason, I didn't know Nate was out there. He sure looks like a happy fellow. Morgan arrived too. What a liitle doll. I can only imagine how well she will look after cranial release. She looks good now. Roxy arrived too. Is the boat on the envelope one of roxy's creations? Judy ========================================================================= Date: Fri, 15 May 1998 10:16:51 -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: pictures MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

> I just wanted to say that I wish > someone would publish our kids pictures, so that when a new Apert baby is born > the parents wouldn't be quite so frightened. I don't know about ya'll, but the > lit. we got after Jordans birth was full of pretty scarey stuff. I know a lot > of times the dramatic stuff gets published..but it often leads to the feeling > of hoplessness. > Jenn(Tampa/St. Pete..I think thats where I am..who can see through this hazy > mess)

Jenn,

This is why I started the Apert Support & Information Network and have also asked that everyone send a picture to the organization (for a future issue of the newsletter) and for Michelle's album.

I pass along more current information and pictures to families to let them know there is "life after birth" by way of the new family packet and the newsletter, APERT NEWS. The future isn't as bleak as the old literature states. It has made a world of difference for parents of newborns and has opened the door for adults as well who's families didn't have the benefits of support or information when they were children.

My latest newcomer is 35 years old and didn't know what her syndrome was called until 5 years old (her parents never told her?) and to this day she has never seen or talked to another individual with Apert. I have added her to the networking list so she can meet some people. She is willing to travel anywhere. She lives in Iowa.

So your wish is already working. With any luck, another issue of APERT NEWS will be reaching your home soon!! All I need is TIME (and a dozen more people, ha)!!!!!

All my best,

Christine ========================================================================= Date: Fri, 15 May 1998 15:02:23 -0400 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Rich Hartley <rhartley@DZIS.COM> Subject: Hi Everyone. New member. Rich Hartley Mime-Version: 1.0 Content-type: text/plain; charset=us-ascii

Andrew spent his first week at Children's hospital in Philadelphia being evaluated etc. We have had him at home for the last week on a monitor as he has apnea. We suspect that he will have his first operation to release the skull sutures at about 2 months of age and then the crainiofacial at about 6 months.

My wife and I live just outside Philadelphia,PA. We have a 3 1/2yr old son. Alex. Our address is: 118 Hartranft Avenue, East Norriton, PA 19401.

I will contact Don (I think his name is) and try get a little web page setup for Andrew, so that he has company. Take care and thank you to everyone for all and any assistance that you can give us.

Regards, Rich & Karen Hartley rhartley@dzis.com ========================================================================= Date: Fri, 15 May 1998 15:17:49 -0400 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Rich Hartley <rhartley@DZIS.COM> Subject: Hi Everyone. New member. Rich Hartley Mime-Version: 1.0 Content-type: text/plain; charset=us-ascii

---------------------- Forwarded by Richard Hartley/DZIS on 05/15/98 03:25 PM ---------------------------

Rich Hartley <rhartley@DZIS.COM> on 05/15/98 03:02:23 PM

Please respond to Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>

To: Apert@Listserv.aol.com cc: (bcc: Richard Hartley/DZIS) Subject: Hi Everyone. New member. Rich Hartley

Hello!. and greetings. My name is Rich Hartley, Our son Andrew was born on 4/30/98 with all the classic Apert syndrome anomalies. Little Andrew is a real cutie and my wife Karen and I are seeking additional information on Apert's. I have been looking at the web site for about 2 weeks and finally had the courage to join. Andrew spent his first week at Children's hospital in Philadelphia being evaluated etc. We have had him at home for the last week on a monitor as he has apnea. We suspect that he will have his first operation to release the skull sutures at about 2 months of age and then the crainiofacial at about 6 months. My wife and I live just outside Philadelphia,PA. We have a 3 1/2yr old son. Alex. Our address is: 118 Hartranft Avenue, East Norriton, PA 19401. I will contact Don (I think his name is) and try get a little web page setup for Andrew, so that he has company. Take care and thank you to everyone for all and any assistance that you can give us. Regards, Rich & Karen Hartley rhartley@dzis.com ========================================================================= Date: Fri, 15 May 1998 15:27:59 -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: Pictures MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit

We received two more picures today after I already sent the other EMAIL. We got Jacob Bailey and Nick Amerman. What nice looking fellows!!!!!!! This is so exciting; I can truly say it is the highlight of my day! Well, other than the fact that little 4 month old Carmen Rae rolled over from her back to her tummy yesterday! I was soooooo excited! I had actually taken my eyes off her for a moment and she started whining. I looked over to see what was wrong and what do you know? She had rolled over onto her tummy. She doesn't really like being on her tummy too much, though. I guess that explains the whining.

Oh well, guess it was my turn to ramble.

Robin Hill ========================================================================= Date: Fri, 15 May 1998 14:35:16 -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: Re: pic exchange list MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

baconsmith wrote: > > Hello all. Does anyone have an updated list for the pic exchange? We > finally have some pix of Peach (EvaJessie) to send out, but I am sure my > list is incomplete. I have been saving envelopes from everyone and our > album is filling out beautifully. Thank you all so much! > > I wanted to say also a quick thank you to Seth for the ornitholestes (or > whatever that dinosaur is!!) I put it in the album with his picture. > > I've been reading silently here in Calgary and sending positive thoughts to > you all heading for surgery. Will post an update later when I can say for > sure that the pix are in the mail. > > So if anyone has the most up to date list of addresses, please post again. > Thanks. > > Pat and the Peach (Tessier 4/5 facial cleft and now a big girl of FIVE!) > aka the Bacon Smith Family in Calgary (finally getting some rain after a > gorgeous sunny hot spring -- the blooms on the trees are just popping -- i > LOVE this time of year) > email to: bluenose@telusplanet.net > IM: onlypeach > shake and shake the ketchup bottle. none will come and then a lot'll ... unknown

Pictures exchange addresses:

1. Rachel Fletcher 3900 Vernon Memphis, Tn 38122

2. Janine Krebs (Emily) 187 Rhode Island Avenue Massapequa, New York 11758

3. Andrea Gartner 11394 Royal Tee Cir. Cape Coral, FL 33991

4. Denise Graham (Daryl) 1030 Fairfield Pike Shelbyville, TN 37160

5. Ann Luxton and Howard and Amy Esler 6 Peter Mulgrew Street Avondale, Auckland 7 New Zealand

6. Jennifer Graham 6220 7th Ave North St. Petersburg, FL 33710

7. Carmen Rae Hill (Mike and Robin Hill) 70 Woodmoor Newnan, Georgia 30263

8. The Bacon Smith Family 100 Clarendon Road, NW Calgary, Alberta, Canada T2L 0P3

9. Carol Graves (Nicholas) 370 Oakland Rd Madison, AL 35758

10. Joanne Lindamood 1533 Regent Avenue Springfield, OH 45503

11. Raquel Miller (Nicole) 16703 Redwood Way Weston, Fl. 33326

12. Judy or Nick Amerman 1035 E. Fairview Ave. Morris, Il. 60450

13. The Sieberts 5226 Walnut Peak Ct. Kingwood, TX 77345

14. Felipe Ize 124 Brumley # 10 Stillwater, OK 74074

15. The Jennerjohns 6987 Ridgetop Dr. N E Kiezer, Oregon 97303

16. The Smith's (Patti, Daniel & Jasmyn) 1538 Morgan Road San Bernardino, CA 92407

17. Dori Jefferson 83 Pine Lane Murphysboro, IL 62901

18. The Lynch Family P.O. Box 609 Lake George, NY 12845

19. Quentin Zaengle 119 Tudor Drive North Wales, PA 19454

20. The Bailey Family RR 1, Box 74 El Paso, IL 61738

21. Lynn Thornquist 4 Taylor Road Holliston, MA 01746

22. Leann Maclean RR 2 Site 4 Box 35 Onoway, Alberta, Canada TOE 1VO

23. Roxanne Chan 16240 East McGill Road La Mirada, CA 90638

24. Vivi Zhang 2279 Pinehaven Dr. Niskayuna, NY 12309

25. Ellen Kelley (Holly) 411 Spring Mill Rd Anderson, IN 46013

26. Jennie Muggli Rt 1 Box 105C Weimar, TX 78962-9530

27. Kris Contreras 1422 N. Park Ridge Deer Park, TX 77536

28. Mark and Michele Smith 208 Connecticut Avenue Warren, PA 16365

29. Morgan Kaye McGahan 11 Elsway Road Short Hills, New Jersey 07078

30. Jones Family RR 3 Box 275 Middleburg, PA 17842

31. LeCara Family 8907 Gayguin Houston Texas 77088

32. Foster Family 1335 Sanderson Ave Scranton, PA 18509

33. Diane Youngblood 445 Horne Hollow Rd Culleoka, TN 38451

34. Robyn Jonston PO Box 25633 Eugene, OR 97402

35. The Contrinos 7310 Norman Road North Tonawanda, NY 14120

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

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

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

39. Nate Finch 10 Field Rd. Lexington, Ma 02173

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

41. The Kilner Family 6571 Sand Wedge CT Alexandria, VA 22312

42. Sara Younkin PO Box 534 Lewisburg, PA 17837

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

44. The Irvins (Alex) 47 South Hempstead Road Westerville, Ohio 43081

45. Claudia Mastellone 1310 40th Ave # A S.F CA 94122

46. Laura Pulido 392 S. Woods Avenue Los Angeles, CA 90022

47. Christine Clark Apert Support & Information Network PO Box 1184 Fair Oaks, CA 95628

48. Sarah, Tim & Bea Yenney C/O Magno 6616 24th Ave. S. Seattle, WA 98108

49. Belinda Vicars 993 North Aspen Way Layton, UT 84040

We have a total of 49 addresses. If we missed someone, please let us know. Thanks, The Ize Family. ========================================================================= Date: Fri, 15 May 1998 15:34:39 -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: ROBIN L HILL <CARMENRAE@PRODIGY.NET> Subject: Re: Hi Everyone. New member. Rich Hartley MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit

Hello Hartleys! I am Robin Hill. My husband, Mike, and I have a darling little girl named Carmen Rae who was born on January 18, 1998 with Aperts. She has had one surgery so far to put a shunt in for hydrocephalus. This was done at 3 months of age. She is scheduled to have her cranial surgery on June 12; she will be almost 5 months old. This family here on the listserver is WONDERFUL!!!! We don't know what we would have done without it. The support, information, and friendships are truly blessings. We think you will enjoy being here!!!! WELCOME and let us know if we can help in any way.

Robin, Mike, and Carmen Rae Hill Newnan, Georgia (30 miles southwest of Atlanta) CARMENRAE@PRODIGY.NET

---------- > From: Rich Hartley <rhartley@DZIS.COM> > To: APERT@LISTSERV.AOL.COM > Subject: Hi Everyone. New member. Rich Hartley > Date: Friday, May 15, 1998 3:02 PM > > Hello!. and greetings. > My name is Rich Hartley, Our son Andrew was born on 4/30/98 with > all the classic Apert syndrome anomalies. Little Andrew is a real > cutie and my wife Karen and I are seeking additional information > on Apert's. I have been looking at the web site for about 2 weeks > and finally had the courage to join. > > Andrew spent his first week at Children's hospital in Philadelphia > being evaluated etc. We have had him at home for the last week > on a monitor as he has apnea. We suspect that he will have his first > operation to release the skull sutures at about 2 months of age and > then the crainiofacial at about 6 months. > > My wife and I live just outside Philadelphia,PA. We have a 3 1/2yr > old son. Alex. Our address is: 118 Hartranft Avenue, East Norriton, > PA 19401. > > I will contact Don (I think his name is) and try get a little web page > setup for Andrew, so that he has company. Take care and thank you > to everyone for all and any assistance that you can give us. > > Regards, > Rich & Karen Hartley > rhartley@dzis.com ========================================================================= Date: Fri, 15 May 1998 14:39:30 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Tim Graves <timg@BELLSOUTH.NET> Organization: home Subject: welcome MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

Welcome Rich and Karen... I know you will love it here and all the friendly people... its a great source of information and support... only wish I would have had this when Nicholas was born, but I do now and thats what counts.. Our son Nicholas is 6 now, in kindergarten and will be going to 1st grade in the fall.. He has had 14 surgeries thus far.. and is a strong little trooper as I am sure most of our kids are.. anyway.. once again... WELCOME !

Carol Graves ========================================================================= Date: Fri, 15 May 1998 15:39:13 -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: 2nd Welcome to the Hartleys MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit

Robin Hill again! Boy, I have been wearing this listserver out today!!!! I forgot to tell the Hartley's that Carmen Rae is also on an apnea monitor. She has been on it since we brought her home and will probably stay on it until a month or so after her cranial surgery. We have been real lucky as Carmen Rae has not had any REAL events (thats what they call them here). Just thought I'd let you know you are not alone with the ole monitor thing! In some ways they can be more trouble than they seem to be worth, but I have to admit I sleep better knowing she is HOOKED up!

Take Care and welcome again!!!!! ========================================================================= Date: Fri, 15 May 1998 15:47:41 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jenngram <Jenngram@AOL.COM> Subject: Re: Hi Everyone. New member. Rich Hartley Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

A big ole' welcome to the Hartley family from way down here in Tampa. we have a little boy, Jordan, who was born 9-18-97. He has the cranila release and oribital advancement in Feb. and Mon we start on the fingers...w/ the thumb releasal being first.

Right now I imagine your head is still spinning, but things will become normal soon. Welcome to this home away from home. I think you'll find it as wonderful a place as we have.

Another Andrew to the group..pretty soon this could get confusing!!!!!!!

Jennifer graham (Tampa/St.Pete) ========================================================================= Date: Fri, 15 May 1998 15:57:17 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: Jenngram <Jenngram@AOL.COM> Subject: Re: Pictures Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

first, I wnat to let Christine know what a wonderful thing it is she is doing w/ the Apert Support and Info Network. Whenever I look something up, or am on a quest for info..the Apert Support and Info Network is always on as a resourcce list. I hope people take advantage of it..esp. those without access to a computer. There must be tons of Aper families out there, that don't have access to the list, but still crave knowledge and information.

And secondly..congrats to Carmen Rae on her newest achievemnets. I remember how anxiety ridden I was b/c Jordan wouldn't roll over..he just hated being on his stomach. WELLLLLLLLLLLLLLLL..let me tell you that has changed..couldn't pay him to do it..now can't pay him NOT to do it. He's crawling about...being quite the handful.(just ask the once poor neglected puppy Alex...he's wishing he was still being so neglected!!!!! :) :)).Hence, ya'll don't read nearly as much from me as ya use to!!!! See, ya'll are thanking Jordan for finally giving me something to do!!!!!!!!

Watch out Robin..pretty soon there will be no stopping her!!!!! Minus walls..entertainment centers..cabnets... and the such :) :)

Jenn(Tampa/St. Pete) ========================================================================= Date: Fri, 15 May 1998 16:10:03 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: Hi Everyone. New member. Rich Hartley Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Rich and family:

Congratulations and welcome to the group. We are the Sieberts in Houston, Tx. Our son, Jonathan was born 12/6/96 with Apert syndrome and we also have an 8 (soon to be 9) year old daughter named Melissa. This group has been my lifeline since Jonathan was born and we feel blessed to have this wonderful means of communication with other families going through the same things. Please don't hesitate to ask anything. Everyone here is very supportive and we wish you the best with your darling new baby boy Andrew.

Brenda Houston ========================================================================= Date: Fri, 15 May 1998 16:16:40 -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: Welcome Hartley Family Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

Hello and welcome to the Hartley family. We are the Fosters from Scranton Pa. My name is Karen and my husbands name is Bill.We have seven children our youngest who is 14 months has Aperts. His name is Billy. I am glad you found our family of some of the greatest people you will ever meet. This Listserver is one big happy family and there is always someone who can answer your questions. If someone does't have the answer they can usually tell you who does.

We have had Billy's surgery at Hershey Medical Center. He has had 4 so far and is gettting ready to start the fingers on May the 22nd. Please feel free to ask away and know that there is no stupid questions.

We received Roxy's picture and also Jacob and Amy. I am so happy with all of the pictures we have received and our scrape book is starting to really take shape.There is already 17 pictures.

Well,the weather here is 82% and Billy hates it. I wish he didn't over heat so easily.Just five minutes outside even in the shade and he is soaked. Oh well, as someone said earlier thank god for air conditioners.

Bye, Karen(PA) ========================================================================= Date: Fri, 15 May 1998 12:18:11 -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: "Christine L. Clark" <apertnet@IX.NETCOM.COM> Organization: APERT SUPPORT & INFORMATION NETWORK Subject: Re: Hi Everyone. New member. Rich Hartley MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

Rich & Karen,

Congratulations on the birth of Andrew!! Have you had any sleep yet? I'm so glad those days of real sleep deprivation are over!!

Michelle (ma Belle) is our shining star. She will be 8 years old on June 5th. I started this network in 1995 to help other families facing the challenge of Apert and will add you to my mailing list since you were kind enough to add your address to your message.

I also maintain a networking list for families to be able to contact each other if they wish. Of the over 170 individuals and families on my mailing list - over 90 are now signed up to network. There are several other families in PA if you would like to join. I have all the information I would need to add you except your phone number if you want to get listed before I send the next one out (hopefuly, soon!) or you can think it over and send back the sign up form that will come with a packet I will be mailing you (filled with info and a copy of the latest issue of APERT NEWS). If the answer is yes, please e-mail me privately with your phone number.

All my best,

Christine Clark Apert Support & Information Network P. O. Box 1184 Fair Oaks, CA 95628 (916) 961-1092 (phone + fax) apertnet@ix.netcom.com ========================================================================= Date: Fri, 15 May 1998 16:20:50 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: Seizures Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Ruth-

I can't believe what you went through at TCH. How awful that must of been for you and Kris. Who was the doctor that you saw outside of the med center? Was it a neurologist and are you still seeing that doc versus the guys at TCH? Just curious--we haven't had any seizure problems to date.

Brenda ========================================================================= Date: Fri, 15 May 1998 16:24:02 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: Mailing List Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Congrats on Felipes unveiling. Glad to hear you are pleased with the results. We are still contemplating the idea of doing the feet. We are at a standstill until we get done with his hands and then we will pursue the foot issue and see where we are at that time.

Brenda ========================================================================= Date: Fri, 15 May 1998 16:24:26 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: ChMathis <ChMathis@AOL.COM> Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Good luck to Billy, and may God bless this surgery. I worry about Zoey's hands too, but my biggest concern is that she can use what she has, so if she can't have them all, fine, I just want her to use what she has to her fullest. Again, good luck little Billy! Christina, Zoey and Tia Mathis from no-rain-yet San Antonio ========================================================================= Date: Fri, 15 May 1998 16:26:45 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: NephiRose <NephiRose@AOL.COM> Subject: Re: Pictures Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

In a message dated 98-05-15 15:29:29 EDT, you write:

<< Well, other than the fact that little 4 month old Carmen Rae rolled over from her back to her tummy yesterday! I was soooooo excited! I had actually taken my eyes off her for a moment and she started whining. >>

Wow, that is a great milestone. My Sarah didn't even think about that until about seven months. Better watch out, she'll be all over the place :) Congrats.

Belinda ========================================================================= Date: Fri, 15 May 1998 16:38:17 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: NephiRose <NephiRose@AOL.COM> Subject: Sarah's walking! Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

If I didn't see it, I wouldn't have believed it. My son Logan coaxed Sarah to WALK five steps for a slice of cantelope. I was floored. And here I thought she was a permanent scooter! She is 21 months. Maybe my left arm will shrink back to its normal size from carrying her around. :O) We are thrilled.

Welcome to the Hartley family, I'm a newcomer myself. What Christine has done is tremendous. I wish I known about this before. Hope this listserver will be boon for you as it has been for me. Congratulations on the new addition to your family, Andrew.

Belinda ========================================================================= Date: Fri, 15 May 1998 16:37:12 -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: Rich Hartley <rhartley@DZIS.COM> Subject: Re: Rich Hartley - Apert News Subscription. Mime-Version: 1.0 Content-type: text/plain; charset=us-ascii

Dear Christine, Thank you for your information and the services you provide. Much appreciated. Within 1 1/2 hours of joining this group I have already received about 10 replies. Please add us to your list: Rich & Karen Hartley 118 Hartranft Avenue,East Norriton,PA 19401 PH: (610)275-2401 Home.

Regards, Rich Hartley ========================================================================= Date: Fri, 15 May 1998 15:05:35 -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: "Wittenburg, Mark" <Mark_Wittenburg@TEMPE.GOV> Subject: FW: pictures MIME-Version: 1.0 Content-Type: text/plain

> If your friend is really interested in doing a little traveling I have > constant contact with three Apert patients BESIDES my daughter here in > Arizona. > Their ages range from 2 1/2 to almost 50 so have her give me a > call.... > > Jackie's Mom, Kathy..........(602) 830-3806 > > ---------- > From: Wittenburg, Mark > Sent: Friday, May 15, 1998 11:25 AM > To: Kathy > Subject: FW: pictures > > > > ---------- > From: Christine L. Clark[SMTP:APERTNET@IX.NETCOM.COM] > Sent: Friday, May 15, 1998 10:16:51 AM > To: APERT@LISTSERV.AOL.COM > Subject: Re: pictures > Auto forwarded by a Rule > > > I just wanted to say that I wish > > someone would publish our kids pictures, so that when a new Apert > baby is born > > the parents wouldn't be quite so frightened. I don't know about > ya'll, but the > > lit. we got after Jordans birth was full of pretty scarey stuff. I > know a lot > > of times the dramatic stuff gets published..but it often leads to > the feeling > > of hoplessness. > > Jenn(Tampa/St. Pete..I think thats where I am..who can see through > this hazy > > mess) > > Jenn, > > This is why I started the Apert Support & Information Network and have > also asked that everyone send a picture to the organization (for a > future issue of the newsletter) and for Michelle's album. > > I pass along more current information and pictures to families to let > them know there is "life after birth" by way of the new family packet > and the newsletter, APERT NEWS. The future isn't as bleak as the old > literature states. It has made a world of difference for parents of > newborns and has opened the door for adults as well who's families > didn't > have the benefits of support or information when they were children. > > My latest newcomer is 35 years old and didn't know what her syndrome > was > called until 5 years old (her parents never told her?) and to this day > she has never seen or talked to another individual with Apert. I have > added her to the networking list so she can meet some people. She is > willing to travel anywhere. She lives in Iowa. > > So your wish is already working. With any luck, another issue of > APERT > NEWS will be reaching your home soon!! All I need is TIME (and a > dozen more people, ha)!!!!! > > All my best, > > Christine > ========================================================================= Date: Fri, 15 May 1998 19:08:18 +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>

Hello!

Christine, can you send me the name of the 35 year old with Aperts? I'd love the opportunity to chat with another adult (no offense to the parents!).

Welcome to the Hartley family, my name is Joanne. I am 33 and have Aperts myself. My life is a tad bit overwhelming right now, I just started a new job as a activity coordinator in a retirement community, I am in school to receive the seal of approval from the state of Ohio in Therapeutic Recreation, I am a single mother of two birds, (okay, so I take that a little too seriously) Clarence and Coal. I was in the middle of rearranging my home until I got tired and stopped in mid move. Now my feet are propped up on a stack of books that have not returned to their original home. Thank God it's Friday!

We are one big happy family and welcome you to it!

I have a favor to ask you all. Christine has put me in touch with a young adult with Apert's. her name is Margot. She loves to write and receive letters. I have tried to keep up with her but right now my plate is full and I cannot regularly write. She does not have a computer so the e-mail is out. I thought if several of us could write to her, she would not feel offended when one of us couldn't write immediately. Would any of you like to write to her? Can I send her your address? Since I have the photo exchange list, I have most of your addresses. You don't need to re-send it. Just let me know if it's okay to send it to her. I received a letter from her last week. I would like to respond to her soon if you want to write to her, let me know and I will include your name in this letter. Thanks in advance.

Joanne in Ohio It's actually HOT! ========================================================================= Date: Fri, 15 May 1998 18:15:14 -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: Re: Hi Everyone.New member MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

Welcome and congratulations to Rich and Karen!!!

We are the Ize family from Oklahoma. We have 2 1/2 years old twin boys named Felipe and Rafael. Felipe was born with Apert's. This is a wonderful place that you can count on! If you would like to be part of our pictures exchange, let me know and I will send you our mailing list.

Welcome again, Claudia, Carlos, Rafael and Felipe Ize. ========================================================================= Date: Fri, 15 May 1998 18:17:18 -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: Re: Mailing List MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

GSieb91515 wrote: > > Congrats on Felipes unveiling. Glad to hear you are pleased with the results. > We are still contemplating the idea of doing the feet. We are at a standstill > until we get done with his hands and then we will pursue the foot issue and > see where we are at that time. > > Brenda

Thank you Brenda! The Ize's. ========================================================================= Date: Fri, 15 May 1998 18:20:39 -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

Jenn,

Good luck on Jordan's surgery. You will be in our thoughts and prayers!

The Ize's. ========================================================================= Date: Fri, 15 May 1998 18:25:44 -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: Re: Sarah's walking! MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

Congratulations!!!!!!! Now nobody can stop her... Way to go!!! We are happy for you all :-)

The Ize's.

NephiRose wrote:

> > If I didn't see it, I wouldn't have believed it. My son Logan coaxed Sarah to > WALK > five steps for a slice of cantelope. I was floored. And here I thought she > was a permanent scooter! She is 21 months. Maybe my left arm will shrink back > to its normal size from carrying her around. :O) We are thrilled. > > Welcome to the Hartley family, I'm a newcomer myself. What Christine has done > is tremendous. I wish I known about this before. Hope this listserver will > be boon for you as it has been for me. Congratulations on the new addition to > your family, Andrew. > > Belinda ========================================================================= Date: Fri, 15 May 1998 18:37:51 -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: Re: Pictures/ Thanks MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

Today we received Nick's and Roxy's pictures. They are soooooo precious!!!! Thanks for the pictures.

YES, YES... congratulations!!!!

The Ize's. ========================================================================= Date: Fri, 15 May 1998 20:07:12 -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> MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit

You can put my name and address in your letter. I have really gotten excited over getting something other than bills in the mail since our great photo exchange started. Robin Hill

---------- > From: J. G. Lindamood <chanan8@JUNO.COM> > To: APERT@LISTSERV.AOL.COM > Subject: > Date: Friday, May 15, 1998 3:08 PM > > Hello! > > Christine, can you send me the name of the 35 year old with Aperts? I'd > love the opportunity to chat with another adult (no offense to the > parents!). > > Welcome to the Hartley family, my name is Joanne. I am 33 and have > Aperts myself. My life is a tad bit overwhelming right now, I just > started a new job as a activity coordinator in a retirement community, I > am in school to receive the seal of approval from the state of Ohio in > Therapeutic Recreation, I am a single mother of two birds, (okay, so I > take that a little too seriously) Clarence and Coal. I was in the middle > of rearranging my home until I got tired and stopped in mid move. Now my > feet are propped up on a stack of books that have not returned to their > original home. Thank God it's Friday! > > We are one big happy family and welcome you to it! > > I have a favor to ask you all. Christine has put me in touch with a > young adult with Apert's. her name is Margot. She loves to write and > receive letters. I have tried to keep up with her but right now my plate > is full and I cannot regularly write. She does not have a computer so > the e-mail is out. I thought if several of us could write to her, she > would not feel offended when one of us couldn't write immediately. Would > any of you like to write to her? Can I send her your address? Since I > have the photo exchange list, I have most of your addresses. You don't > need to re-send it. Just let me know if it's okay to send it to her. I > received a letter from her last week. I would like to respond to her > soon if you want to write to her, let me know and I will include your > name in this letter. Thanks in advance. > > Joanne in Ohio > It's actually HOT! ========================================================================= Date: Fri, 15 May 1998 20:47:52 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: Re: The Great Photo Exchange Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Ann,

I received Amy's picture the other day too, she is absolutely beautiful. I loved receiving the picture of the whole family. I don't know if I will be able to do the same, because Olan Mills is expensive. Talk to everyone in another message.

Lynn ========================================================================= Date: Fri, 15 May 1998 20:50:01 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: Sending Pictures Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Carol,

I believe that there are some people on the listserv that have a complete list of names. You may have already gotten it from someone. But please give us your address so we can mail ones to you.

Lynn Thornquist ========================================================================= Date: Fri, 15 May 1998 20:57:26 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Thornq <Thornq@AOL.COM> Subject: Re: pic exchange list Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Pat,

Are you telling us that Peach's birthday is 4/5? I would love to jot down her birthday.

Lynn ========================================================================= Date: Fri, 15 May 1998 21:12:34 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: Hi Everyone. New member. Rich Hartley Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Welcome to the Hartley family!!

What wonderful names you have. My husband's name is Rich and our son's name is Andrew. Now isn't that just a coincidence. Let me tell you a little bit about Andrew. He was born with Apert on 9/5/96. Of course after 56 gruelling hours of labor (and those were the ones I felt). It seems like he has had the worst of the skull sutures yet. At least on this listserv. His first cranial surgery was done when he was 3 months old. Technically they rebuilt the back of his skull. His second surgery was on his hands, he has had two hand surgeries, one at 5 months and the other at 11 months. His frontal advancement was done when he was 8 months old and they moved his frontal bone 3/4 of an inch forward. He has tubes in his ears and has had ingrown toenails removed.

He does not have the midface problems like most and his joints are fine. Our next surgery is not until he is 3 years old and at that time he will have his fingers thinned down. But the next major head surgery is when he is 7 or 8 years old, but you never know with these kiddos. They surprise you all the time.

I'm sure that everyone would join me in saying that we would love it if you would join our picture exchange. I know that someone wouldn't mind posting the updated list for you.

I know you will love being here, it is a wonderful extended family. No matter what you problem or question, someone will always respond. This is an extreme wealth of information here. Again, welcome!!!

Lynn Thornquist Thornq@aol.com ========================================================================= Date: Fri, 15 May 1998 21:16:19 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

In a message dated 98-05-15 08:32:46 EDT, you write:

<< don't know about ya'll, but the lit. we got after Jordans birth was full of pretty scarey stuff. I know a lot of times the dramatic stuff gets published..but it often leads to the feeling of hoplessness. >> Jenn, I just wanted to add to what you said. The stuff that I got to look at and read had me so depressed, I didn't know what to do. I wish I had had ya'll back when Zoey was born. I thought Zoey was very cute, and when I saw the pictures they gave, I thought she was going to grow up and look exactly like these other children/adults. And the pictures I got (after being photocopied a bunch of times, so you could barely see) looked like they were of adults/older children who had never had surgery. They really should publish our children in a book, and I think it would make new parents feel SO MUCH better. These children are beautiful and happy just like "normal" children, I don't believe their differences bother them at all. I remember feeling different when I was a kid, and my hands looked just like their's. Anyway, it's just my two cents. Take care. Christina, Zoey and Tia Mathis Hazy San Antonio ========================================================================= Date: Fri, 15 May 1998 21:21:05 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: Carmen Rae's Pictures Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Christina and Zoey here, and we are just about to do a major mailing tomorrow and I only have 42 names. It sounds as if I am missing six. If someone could help us out, the last name on our list is Sara Younkin. Thanks! Christina ========================================================================= Date: Fri, 15 May 1998 21:24:26 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: ChMathis <ChMathis@AOL.COM> Subject: Re: pictures Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

In a message dated 98-05-15 14:18:53 EDT, you write:

<< This is why I started the Apert Support & Information Network and have also asked that everyone send a picture to the organization (for a future issue of the newsletter) and for Michelle's album. >> Christine, How do I get a copy of the Apert Support & Info Network, and what's the address to send Zoey's picture to? Christina and Zoey Mathis ========================================================================= Date: Fri, 15 May 1998 21:34:12 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: Question for someone! Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Ruth,

Yes, it was I. Jonathan will be at TCH for his next hand surgery on 6/5. I wasn't sure how long Kris would be in the hospital and if she would be in ICU for a day. I'm still unclear as to what the procedure is that she is having done. I talked with Sherry and she said it was not a LaFort. Let us know what your situation is and we hope to meet you on the 5th.

Brenda ========================================================================= Date: Fri, 15 May 1998 21:36:15 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: Hi Everyone. New member. Rich Hartley Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Hi Rich and Karen and little Andrew, my name is Christina Mathis, and my daughter, Zoey has Aperts. Gosh, your young'un is barely a month old. I'm glad he's doing well. Zoey spent her first two months in the hospital, and was trach'd at three weeks old. She's 15 months old now, and a real fiesty little one. I've written your address down and you will get a picture in the mail soon. Welcome, this is great place, ask your questions, and whatever I can answer, I sure will. Christina, Zoey and big sister Tia Mathis From humid, hazy San Antonio, TX ========================================================================= Date: Fri, 15 May 1998 21:47:30 -0400 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: ROBIN L HILL <CARMENRAE@PRODIGY.NET> Subject: Re: Carmen Rae's Pictures MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit

I have seven names after Sara Younkin, I thought you could maybe eliminate one you already have. Here goes.....

Steve and Stacy Bell (Brooke Leanne) 8122 New Cut Rd. Severn, MD 21144

The Irvins (Alex) 47 South Hempstead Rd. Westerville, Ohio 43081

Claudia Mastellone 1310 40th Ave. #A San Francisco, CA 94122

Laura Pulido 392 S. Woods Ave. Los Angeles, CA 90022

Belinda Vicars 993 North Aspen Way Layton, UT 84040

Sarah, Tim and Bea Yenney C/O Magno 6616 24th Ave. S. Seattle, WA 98108

Apert Syndrome & Info Network (Christine Clark) P.O. Box 1184 Fair Oaks, CA 95628

Hope this helps.

Robin Hill

---------- > From: ChMathis <ChMathis@AOL.COM> > To: APERT@LISTSERV.AOL.COM > Subject: Re: Carmen Rae's Pictures > Date: Friday, May 15, 1998 9:21 PM > > Christina and Zoey here, and we are just about to do a major mailing tomorrow > and I only have 42 names. It sounds as if I am missing six. If someone could > help us out, the last name on our list is Sara Younkin. Thanks! > Christina ========================================================================= Date: Fri, 15 May 1998 21:56:40 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: GSieb91515 <GSieb91515@AOL.COM> Subject: Re: Just ramblin'! Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Christina-

You may want to see Dr. Shenaq in Houston for a second opinion on Zoey's hands. He is really great and we are very happy with him. You are only a few hours away from the med center. Let me know if you would like more info to talk to him.

Brenda Houston ========================================================================= Date: Sat, 16 May 1998 01:12:38 -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: "Joana H.Magno, M.D., F.A.C.C." <magnomd@ALOHA.NET> Subject: Sarah Yenney MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii; x-mac-type="54455854"; x-mac-creator="4D4F5353" Content-Transfer-Encoding: 7bit

Sarah Yenney had her frontal advancement today at Children's Hospital in Seattle. She is a real trooper and came thru surgery really well. Julie Sanchez, A.J.'s mom was also at the hospital along with Bea & Tim Yenney.

She now looks even more like our daughter, Margaret. Will have to have a new picture made --- will it be hula skirts again, or something else?

Joana Magno ========================================================================= Date: Fri, 15 May 1998 22:06:00 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> Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Joanne, I have to let you know that I think you have a wonderful sense of humor and only hope that both my kids grow up with such a wonderful disposition like yours. I love reading your mail and I don't know anyone in Ohio, but if we're ever up there, I'd love for us to meet you. Take care. Christina, Zoey and Tia Mathis San Antone ========================================================================= Date: Fri, 15 May 1998 23:20:45 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Kakoor 112 <Kakoor112@AOL.COM> Subject: Re: Requesting information Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Ann,

Thank you for replying. My student will need assistance in all areas. As far as I know she has not had any real corrective surgery. She was born in Mexico and has only lived here for about 1 1/2 years. I know that her fingers are still webbed together and I have been told she uses them quite well as a unit. She is potty trained and only requires assistance at times to pull up her pants. She is almost non-verbal but understands what is said to her. Her functioning level is int he mentally retarded range, however, that could change later with further testing. I"ve also been told that she has a severe temper at times.

This is what I know as of now. Any information would be of great benefit.

Again, thank you, Karen Arab ========================================================================= Date: Sat, 16 May 1998 09:23:42 -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: Just ramblin'! MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

Lynn, I couldn't agree with you more. I also would not know what to do without this list-serv. You guys are the only people in the whole wide world that can really truly understand what we are going through. So when any of you write I know what you are going through, you really know what we are going through. It's not just words coming out of your mouths, I know people mean well, but down inside I always think, yeah, you don't know what I'm going through.

You know I thought I was over this but maybe you never get over this. Just yesterday I went to the mall during my lunch hour and as I was walking around I kept on seeing little babies in their strollers and it never failed I always looked in the strollers to get a glimpse of them not to just see them but to see if they had Aperts. I don't know I probably sound crazy but Nicole is already 7 months old and I still have those whys roaming around inside of me, I shake them off quickly, but I hate it when they come back. Maybe those whys will always be there who knows. Or maybe it's just going to take a little longer for me.

I'm sorry everyone but I have to vent and this just happened to me yesterday, I wasn't going to say anything but then when I read Lynn's e-mail I just felt I had to. I must vent, it helps me.....

Well, I hope all of the kids are recovering from their illnessess, sorry about Sarah's surgery being cancelled (I KNOW HOW THAT FEELS) and I hope she is feeling better.

Jenn, are you hanging in there? Give a big kiss to Jordan for me and tell him that Nicole can't wait to meet him. I wish you guys the best on Monday, please let us know how everything went.

Yesterday we received two more pictures Amy Colleen's and Roxy's this is just too much fun. Keep those pictures coming...

Well talk to you guys later, believe it or not I still have 65 more e-mails to read, so you might hear from me later...

Raquel Miller... ========================================================================= Date: Sat, 16 May 1998 07:18:30 -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: more pictures MIME-version: 1.0 Content-type: text/plain; charset="iso-8859-1" Content-Transfer-Encoding: 8bit

. n m �Ú" [[ v vccrxvgggggggktjobvcovcbb,oc6rcnj,cvgy6hrnoxlorcm

Daryl was having a fit to type something to you. Hope you can read it!ha...ha...

I received Nick and Vivi's pictures today! Vivi's hands look nice and Nick is so handsome! He is what I picture Daryl looking like in a few years! Hope everyone is doing well! God Bless!

nnn n bn nvgkjnnnvbvmvyvddybvmdbvvbuyvduvmbvbyvbbbbbbbd

Denise Graham and Daryl ========================================================================= Date: Sat, 16 May 1998 10:07:28 -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

Good day...

I want all of you that have not received Nicole's picture to know that you will be receiving them soon, we had to order more copies because we ran out. I know this is asking too much but those of you that have not received her picture could you kindly just let me know because I seem to have misplaced the list checking off all the names of families we sent the pictures to. I know it was 35 so I am still missing quite a few. I am so sorry, I am usually not so disorganized, I think after four kids I've lost a few of those very nessasary brain cells...

thanks all...

Raquel Miller..... ========================================================================= Date: Sat, 16 May 1998 11:23:09 -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: .. MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

Hi Joanne,

I will be glad to change letters with Margot! Put me in please.

Claudia Ize. ========================================================================= Date: Sat, 16 May 1998 11:54:43 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: ETolson643 <ETolson643@AOL.COM> Subject: Re: Milestones Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

To all: It is so interesting to read about the anguish over milestones; I can remember SO well the worrying about when Tim would roll over, walk, talk, etc.....to help you see the perspective from an older child I wish you could have seen Tim in his school musical last night. They put on the show "Pippin" (a comedy about Charlemagne's son finding the meaning of life.) Tim did a great job...remembered his lines and the dances very well. He was so proud of himself and we were so proud to see him on stage. Little did I think when I would stand over his crib and wonder if he would ever roll over that he would be singing and dancing on stage!!!

Beth ========================================================================= Date: Sat, 16 May 1998 09:48:54 -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: Welcome!! MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

A big welcome to the Hartley's, I am so glad you decided to join this list-sev, believe me you will not regret it. This is the only place where you can vent all your frustrations, ask questions to people who's been there done that and you will always get a response.

We are the Millers, Jack and Raquel we are from South Florida (Ft. Lauderdale area) we have four kids, Michelle 14, Steven 10, Erica 3 and our baby Nicole 7 mo. born with Aperts.

I want you to know that we are here if you need us. Together we can get through this long road ahead of us. Again welcome and hope to continue to hear from you.

Raquel Miller in also hazy South Florida... ========================================================================= Date: Sat, 16 May 1998 15:46:55 -0600 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: baconsmith <bluenose@TELUSPLANET.NET> Subject: publishing pictures Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

Hi Christina and everyone else. Here is a question I will pose to you all. Would you object to us sharing your kids' pictures with others? I am carefully collecting them all in a photo album for Evajessie and me. I would love to be able to share them with others as well.

Many of you already know that I am involved with the Alberta Cleft Palate Craniofacial Foundation. June 6-13 is About Face Awareness Week. Together with our Children's Hospital and About Face, our Foundation is planning on setting up a table display in the children's Hospital lobby here in Calgary. Among our items, we will be including a resource binder cataloging as many resources as we can find (books, videos, addresses of organizations and some pictures of our own kiddos. I would love to simply leave the photo album on the table for folks to look thru. Perhaps they may see someone there who looks like themselves (something that I still haven't found for EvaJessie)

If you would kindly drop me a note and let me know if this is okay with you, I would appreciate it. I will remove any pages of kids whose parents prefer not to be included.

Thank you again for this picture exchange. I too look forward to the mail everyday! Pat and the Peach in Calgary email to: bluenose@telusplanet.net IM: onlypeach shake and shake the ketchup bottle. none will come and then a lot'll ... unknown ========================================================================= Date: Fri, 16 May 1997 14:21:16 -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: Longshot & Darwin <Longshot.Darwin@MCIONE.COM> Subject: Re: hands/pictures/welcome In-Reply-To: <77e52a21.35584496@aol.com> MIME-version: 1.0 Content-type: text/plain; charset=US-ASCII; X-MAPIextension=".TXT" Content-transfer-encoding: 7bit

Jenn,

I still have a place on my leg where the doctors took bone out for my face surgeries in which it feels numb all the time and when it rains sometimes it hurts. That was almost five years ago. Welcome to the new families. My name is Rachel Fletcher. I am 24 years old and I have Apert's. I also have a husband named Chris. I had my surgeries in 1993. Before that, I had to spend 4 years in braces. All of my fingers are seperated. I also had a mid-face advancement. If you have any questions, please feel free to email me. Thanks to all who have sent pictures. I have recieved Andrew, Jordan, Cici, Daryl, Morgan, Roxy, Nick, Colin, Jacob, Sarah, Quentin, Brenna, Seth, Nicole, Carmen Rae, Emily, and Sara & Margaret. All are just beautiful. I finally have gotten copies to send out and will be doing it this weekend. Good luck to those having surgeries. Hope everyone is well.

Rachel longshot.darwin@mcione.com ========================================================================= Date: Sat, 16 May 1998 19:06:13 -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: WANT TO BE ON PIC. LIST MIME-version: 1.0 Content-type: text/plain; charset="us-ascii"

Lori and Shannon Parks would like to be on the picture exchange list. Their son, Levi, just had his cranial surgery Thursday. He is doing fine and hopes to get back on the list soon. God Bless!

Shannon & Lori Parks (Levi) 19270 Coal Valley St. Marion, IL 62959

Denise Graham ========================================================================= Date: Sat, 16 May 1998 15:46:53 -0600 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: baconsmith <bluenose@TELUSPLANET.NET> Subject: Peach's bd (was pic exchange list) Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

Lynn, her birthday is May 12. She is five this year -- last weekend we had seven little flowers blooming all over our yard in their fancy dresses for a party. It was such fun. Envelopes with pix being addressed as you read this ... just need to make a trip to the post office for stamps! Pat in Calgary (looks like rain for the long weekend here -- called Victoria Day the official birthday of our Queen)

>Pat, > >Are you telling us that Peach's birthday is 4/5? I would love to jot down her >birthday. > >Lynn > > email to: bluenose@telusplanet.net IM: onlypeach shake and shake the ketchup bottle. none will come and then a lot'll ... unknown ========================================================================= Date: Sat, 16 May 1998 18:26:38 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: MHTeach102 <MHTeach102@AOL.COM> Subject: Re: Sending Pictures Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Lynn,

This is late I know but I would love to receive a list of the names. We are going to have a family picture done sometime this month and will send those out. Marjorie ========================================================================= Date: Sun, 17 May 1998 12:34:28 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: Checking in before surgery Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Dear all, The past couple of weeks I have been preparing the house and kids for our trip to St. Louis for Mitchell's surgery on Thursday, the 21st. My mother-in- law from Mississippi is staying with Rebecca (13) and Stephen (10), so I wanted to be sure I didn't have any closests that might fall out on top of her while we were gone. I've made list and list of things they might need to know, and I'm just about listed out. I'm even keeping a list on the nightstand so I can write things down when I'm laying there in bed worrying. I'm glad everyone's recent surgeries went well. I'll try to get Rebecca to Email you after Mitchell's surgery since I won't be home for two weeks. How I'm going to survive for two weeks without Rebecca and Stephen, I don't know. I just hope Stephen doesn't get on my mother-in-laws nerves too badly. I'll miss you all too. Catch you in a couple of weeks. Resa ========================================================================= Date: Fri, 15 May 1998 22:01:21 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: GSieb91515 <GSieb91515@AOL.COM> Subject: Re: Just ramblin'! Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Happy Birthday Plum! You are a cutie. We enjoyed getting your picture the other day. What a beautiful family. I'm sure Caden is keeping everyone busy. Hope he is sleeping more at night now.

Best Wishes for a very fun birthday party!

The Sieberts

p.s. Jonathan 's photos went out today. ========================================================================= Date: Fri, 15 May 1998 22:13:28 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: Just ramblin'! Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

In a message dated 98-05-15 22:00:43 EDT, you write:

<< You may want to see Dr. Shenaq in Houston for a second opinion on Zoey's hands. He is really great and we are very happy with him. You are only a few hours away from the med center. Let me know if you would like more info to talk to him. >> Do you have a number or address, Houston isn't too far away, I'd love to atleast send him Zoey's pictures/story? Christina ========================================================================= Date: Fri, 15 May 1998 23:38:37 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Thornq <Thornq@AOL.COM> Subject: CONGRATULATIONS!!!!! Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

HOORAY!!!!!!!

WE HAVE TWO VERY BIG GIRLS TODAY!!!!!! I was thrilled when I heard about Carmen Rae and Sarah's accomplishments today. I can remember when I was waiting for Andrew to come to that. Because at 3 months Andrew was doing nothing, and I mean nothing. I'm with Belinda, I don't think Andrew rolled over until he was about 6 or 7 months. He walked when he was 15 months, and now you can't stop him. He just won't sit still. Everyone told me not to wish for him to walk because I would have my hands full, but I'm still excited that he is walking. People don't understand that we get more excited over these accomplishments, which they think are just ordinary.

Congratulations again to Carmen Rae and Sarah.

Lynn Thornquist ========================================================================= Date: Fri, 15 May 1998 22:14:59 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: NephiRose <NephiRose@AOL.COM> Subject: Re: pictures Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

In a message dated 98-05-15 21:24:47 EDT, you write:

I'd like to know more about this too and how to get Sarah V on it.

Belinda ========================================================================= Date: Sun, 17 May 1998 12:43:01 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: Thanks for all the help Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Dear all, I just wanted to add that I appreciate so much all the advice and tips you have given me the past few months. It has been so helpful. We have kept Mitchell very isolated the past three weeks to try to prevent his getting sick. Still, last Thursday, he was diagnosed with pneumonia of all things. We started antibiotics and his pediatrician thinks he will be OK. He will be checked out in St. Louis on Tuesday. All we can do is hope for the best. How do you catch pneumonia? I don't know what we did wrong. I have stayed home from church the last three Sundays to keep him away from all the people that adore him so much (hugs and kisses, etc.) and the nursery. It just killed me to miss Mother's Day and it hurts even more to not be in church services the Sunday before his surgery. Of course if I was there, all I would do is cry, so maybe it's for the best. Be talking to you, Resa ========================================================================= Date: Sun, 17 May 1998 13:03:01 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: Helmet questions revisited Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Dear all, I read a post at the Harvard Neurology Web Forum from a mother who believes a helmet caused her son to have a language delay. Has anyone had any experience with this? I talked with Dr. Marsh's office about it and they thought I was a little weird, but said if I wanted the ears cut out of Mitchell's helmet, it was OK with them. I felt a little patronized, but you've got to do what you think's right for your child. I've got to get off this computer and go do STUFF. I love you all. Thanks!

Resa ========================================================================= Date: Sun, 17 May 1998 21:29:45 -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: Laurie Bailey <jkb@ELPASO.NET> Subject: Lori Parks in Marion, IL MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit

I apologize to everyone on the listserv but, I couldn't remember Dori's address specifically.

Dori,

Judy told you of a family in Marion. The mom's name is Lori Parks. Their son's name is Levi. He was born in November. Lori contacted me by phone after seeing Jacob on Teeters page. We talked for over an hour. She was contacting me to find out who Jake's doctors are. She was researching her options for Levi. I know you are not very far from where they live so, I'm sending you her phone number. For the longest time I couldn't find it. So, when I get a few minutes, I'm also going to call her back to see how she is doing.

Judy and I talked about the last weekend in July for our little get together. How does that sound to you? Hopefully, we can get Lori and her family to want to come also.

Lori's phone number is: 618-982-2663.

Laurie Bailey jkb@elpaso.net ========================================================================= Date: Fri, 15 May 1998 21:57:51 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: Hi Everyone. New member. Rich Hartley Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Hi, Christina and Zoey Mathis here, please add us to those list(s) you were talking about to the Hartley's. our address is 7735 Branston, San Antonio, TX 78250 Thanks Christina ========================================================================= Date: Sun, 17 May 1998 17:38:01 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> Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Congrats to Sarah! Way to go. Maybe Mom's arms will start to feel better.

Ditto to Carmen Rae on turning over. I remember when Emily rolled over, I, too, did a double-take to make sure she did it. I was shocked.

Welcome to the Hartley family. We are the Krebs family from New York, Brian, Janine, Nicholas and Emily. Emily is our 9 and a half month old angel with Aperts. She has had two surgeries and is scheduled for Friday for her palate repair. I know you have received lots of mail about this list. All I will say is everything you've been told is true. It's my home away from home. This is my second family. Welcome again and congratulations on the birth of Andrew.

If you were looking for the address for the newsletter it's Apert Support and Information Network PO Box 1184 Fair Oaks, CA 95628

Christine Clark, Director

Hope all is well with everyone,

Janine Krebs ========================================================================= Date: Mon, 18 May 1998 22:19:57 +1000 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Carol & Jason <carolh@HOTKEY.NET.AU> Subject: Sending Pictures MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

Hi please add me to the exchange list I know that I am a little far away but I will do my best to send as many back as I can. My address is-

Carol Hamzsak 2 Woomera Street RYE VIC 3941 AUSTRALIA

Looking Forward to sending and receiving. Carol ========================================================================= Date: Fri, 15 May 1998 23:43:39 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: Feet!!! Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Hello friends,

Just one question.....I think I missed something. Did Felipe have his feet separated? Is that what everyone is talking about the reveiling? We have decided to do Andrew's feet, but not until he is about 4 years old. At least that is what Dr. Upton has told us. But Kimberly Belsley had hers done when she was 19 months (if i'm right). I must talk to Dr. Upton about changing the time and why he is waiting until 4 years. I think it's because the toes will grow, but wouldn't they grow better if they were separated?

Boy, I guess I had alot of questions. Please let me know about Felipe.

Lynn Thornquist ========================================================================= Date: Mon, 18 May 1998 22:13:43 +1000 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Carol & Jason <carolh@HOTKEY.NET.AU> Subject: Sending Pictures MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

Hi Everyone!

I would luv to join the picture exchange List where or whom do I send my address to as I dont know if Im suppose to put it on the listserv due to security reasons or is this safe??

Carol ========================================================================= Date: Fri, 15 May 1998 22:01:47 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: Sarah's walking! Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

CONGRADULATIONS to Sarah for walking! I can't wait for Zoey to walk. I guess 15 months and not walking isn't too bad, and everything that she's into already, maybe waiting for the walking is good. If I know my Zoey, the first thing she's going to walk to is the door! We keep her sheltered from this "haze" here in San Antonio, and I know she wants to bust out! Hooray for Sarah! Christina San Antone ========================================================================= Date: Mon, 18 May 1998 07:51:00 -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: Sarah Yenney Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

Joana, thanks for updating us. We will be praying for Sarah's recovery. This is where we will be taking Brenna for her next big surgeries too. They seem very good and experienced.

Good luck and best wishes to everyone else who is having surgery this week. I know there are many.

Hugs, Robyn J.

>Sarah Yenney had her frontal advancement today at Children's Hospital in >Seattle. She is a real trooper and came thru surgery really well. Julie >Sanchez, A.J.'s mom was also at the hospital along with Bea & Tim Yenney. ========================================================================= Date: Sun, 17 May 1998 22:24:17 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Elizabeth de Silva <lizsilva@SRV1.TELCONET.NET> Subject: Re: Hello again MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

Dear friends, it has been a long time since I do not write to you.

First let me welcome to all the new families (since I left to PA -- march 28-- I have found a lot of new friends).

Let me tell you Alba and I finally made the trip!! As our tickets were donated, we were informed in the afternoon of the 27 that the 28 morning we were leaving to PA. I had no time to print out the telephone of our family members that live in PA, I wish I could had the time, it would have been wonderful to have someone with us during the surgery.

For all new friends, my name is Elizabeth, I have a daughter that is 4 years now. She has Aperts.

Albita did it terrific. She was a very brave girl. Dr. Mark Perlmutter was the surgeon. The surgery took ELEVEN HOURS!! but, he operated both hands and Albita is okay. Can you imagine my desperation while waiting... I could not do other thing but just pray.

Then, when she came out, I was hoping she was going to recover okay from the anesthesia and she did. She had casts on both of her hands so mummy must be there for everything. She did not like that at all as she always do her things by herself. Nurses and everybody at the Berwick Hospital were so nice and caring with us!!!

The next thing I want to share with you all is the immense emotion I felt when I saw five fingers in each hand... I think those are the most beautiful hands I've ever see (I know some of you will agree with me).

To all U.S.A. citizens, let me tell you your country is really beautiful. I've seen so many beautiful places and met so many beautiful people. I am very thankful to your country.

As you can imagine I had at my machine more than 600 messages, that I have been downloading. I found some very useful things like someone was going to make a chart to take track of surgery dates, birthdays, and important things. Am I right? If so, could you please share it with me?

The wonderful thing is that you all are sharing pictures. I am really interested sharing with you pictures of Albita and family, and receive your pictures. How can I do this?

There are so many good news of new people, successful surgeries... did Joanne get new job? If so, good luck my friend I am sure your going to be a success. How about BJ and Marjorie? I have not read anything about them.

Sorry for this long message and my apologizes for not being more personal (but I still have messages to read).

God blesses for you all.

Elizabeth ========================================================================= Date: Mon, 18 May 1998 13:38:20 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: Camous <Camous@AOL.COM> Subject: Re: Feet!!! Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Does anyone have any references on Apert feet? Evan's PT would like something/anything. He just got little insoles to keep him from pronating so much from his physiatrist and my basic inclination is to avoid foot surgery if at all possible having seen too many adults wish they had never had their 'routine' bunionectomies, etc. I'd really appreciate any references to journal articles, etc.

Also, if anyone has contact info for the OT with Apert (sorry, it's been a really long time and I can't remember the name) I'd appreciate it. You can send it privately if necessary. Evan's OT would like that- she has borrowed my Bentz book and is eagerly anticipating our receiving the "Clinics" book from Lynn.

Thanks- Sorry I haven't had more to say of late- know y'all are always in our thoughts and prayers through sickness, surgeries, etc. I was so busy that I had about 600 backlogged emails to go through (only one other listserve along with this one) and actually didn't get any new email for about 4 days as I guess I had used up all the space I was allotted. I'm off to a conference in Salt Lake City on Friday....so it'll back up again! The photos have been great! I'm still trying to get the negs from the Easter pix from my mom (slowness at getting things in the mail must be hereditary!!) so I can get Evan's out- to be realistic, it won't happen until I get back from Utah. But it will happen!

Marianne ========================================================================= Date: Mon, 18 May 1998 13:20:11 -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: Question for someone! MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit

Thank you sooooo much for telling me again! Please look for me there at TCH. Sherry is right, they are not going to do a LaFort, just reconstruction all the way around her eyes, forehead and nose. Today we saw Dr, Stal and he took a culture of her nose and hopefully things will be OK for her to proceed as planned.

By the way, did you see my "note" on Sherry Belsley last week? I don't think she's read it ir she would have called me by now!

See you then!

---------- > From: GSieb91515 <GSieb91515@AOL.COM> > To: APERT@LISTSERV.AOL.COM > Subject: Re: Question for someone! > Date: Friday, May 15, 1998 8:34 PM > > Ruth, > > Yes, it was I. Jonathan will be at TCH for his next hand surgery on 6/5. I > wasn't sure how long Kris would be in the hospital and if she would be in ICU > for a day. I'm still unclear as to what the procedure is that she is having > done. I talked with Sherry and she said it was not a LaFort. Let us know > what your situation is and we hope to meet you on the 5th. > > Brenda ========================================================================= Date: Mon, 18 May 1998 14:16:28 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: NephiRose <NephiRose@AOL.COM> Subject: Re: Milestones Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

In a message dated 98-05-18 09:45:21 EDT, you write:

<< To all: It is so interesting to read about the anguish over milestones; I can remember SO well the worrying about when Tim would roll over, walk, talk, etc.....to help you see the perspective from an older child I wish you could have seen Tim in his school musical last night. They put on the show "Pippin" (a comedy about Charlemagne's son finding the meaning of life.) Tim did a great job...remembered his lines and the dances very well. He was so proud of himself and we were so proud to see him on stage. Little did I think when I would stand over his crib and wonder if he would ever roll over that he would be singing and dancing on stage!!!

Beth >>

That is so heartwarming. Thanks for sharing that with us. Yes, I do think we agonize over every milestone. Mostly because we or at least I am uncertain what the future brings for my daughter. Thank you.

Belinda ========================================================================= Date: Mon, 18 May 1998 14:17:30 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: NephiRose <NephiRose@AOL.COM> Subject: Re: publishing pictures Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

its fine with me. Great idea! I've not yet sent mine, but I'm working on it. :)

Belinda ========================================================================= Date: Mon, 18 May 1998 13:23:45 -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: Sarah Yenney MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit

I'm glad she's out of surgery. I think Hula skirts it is!

Praying for you all!

---------- > From: Joana H.Magno, M.D., F.A.C.C. <magnomd@ALOHA.NET> > To: APERT@LISTSERV.AOL.COM > Subject: Sarah Yenney > Date: Saturday, May 16, 1998 3:12 AM > > Sarah Yenney had her frontal advancement today at Children's Hospital in > Seattle. She is a real trooper and came thru surgery really well. Julie > Sanchez, A.J.'s mom was also at the hospital along with Bea & Tim Yenney. > > She now looks even more like our daughter, Margaret. Will have to have a new > picture made --- will it be hula skirts again, or something else? > > Joana Magno ========================================================================= Date: Mon, 18 May 1998 13:25:11 -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: Sarah's walking! MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit

You go girl!! Hurray for Sarah! No stopping her now! Congratulations!

---------- > From: ChMathis <ChMathis@AOL.COM> > To: APERT@LISTSERV.AOL.COM > Subject: Re: Sarah's walking! > Date: Friday, May 15, 1998 9:01 PM > > CONGRADULATIONS to Sarah for walking! I can't wait for Zoey to walk. I guess > 15 months and not walking isn't too bad, and everything that she's into > already, maybe waiting for the walking is good. If I know my Zoey, the first > thing she's going to walk to is the door! We keep her sheltered from this > "haze" here in San Antonio, and I know she wants to bust out! Hooray for > Sarah! > Christina > San Antone ========================================================================= Date: Mon, 18 May 1998 13:29:09 -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: Seizures MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit

Brenda,

I'm sorry I didn't answer this letter, but here it goes, We saw Dr. Nancy Robinson (who by the way, this month, is staying home for a while with her kids) in Clear Lake. She is such a good Dr. Yes, she is a Neurologist. I saw one Dr. at TCH and was not at all impressed with him. As I probably told you, Kris has not had a seizure since then. I'm glad we put our foot down and went our own way!

Ruth

---------- > From: GSieb91515 <GSieb91515@AOL.COM> > To: APERT@LISTSERV.AOL.COM > Subject: Re: Seizures > Date: Friday, May 15, 1998 3:20 PM > > Ruth- > > I can't believe what you went through at TCH. How awful that must of been for > you and Kris. Who was the doctor that you saw outside of the med center? Was > it a neurologist and are you still seeing that doc versus the guys at TCH? > Just curious--we haven't had any seizure problems to date. > > Brenda ========================================================================= Date: Mon, 18 May 1998 14:26:08 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: NephiRose <NephiRose@AOL.COM> Subject: Re: Sarah's walking! Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

In a message dated 98-05-18 09:45:31 EDT, you write:

<< If I know my Zoey, the first thing she's going to walk to is the door! >>

Know what you mean, Sarah has a fit when she wants to go out and I won't let her. ;)

Belinda ========================================================================= Date: Mon, 18 May 1998 16:36:55 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: Thornq <Thornq@AOL.COM> Subject: Re: publishing pictures Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Pat,

You haven't yet received Andrew's picture, but I will be mailing it out to everyone in about a week. I'm sorry, but they told me it would take two weeks instead of five days. So just to make up for me being a little late, I am sending two of him.

But, the answer is yes to having Andrew's picture in the album. I think it would be wonderful for other kids to see and understand. Good luck with the conference.

Lynn Thornquist ========================================================================= Date: Mon, 18 May 1998 16:39:37 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Thornq <Thornq@AOL.COM> Subject: Re: Sarah Yenney Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Glad to hear that Sarah's frontal advancement went well. I would love a new picture of her after her frontal advancement. I sure hope you don't end up having to send out 46 more pictures, again.

Lynn Thornquist ========================================================================= Date: Mon, 18 May 1998 16:48:16 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 ramblin'! Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Raquel,

I know how you feel about looking into the strollers as you walk down the street, through the mall, or simply in a restaurant. I do it too! I always look to see if they might have a disability as well, maybe not Apert, but something. I used to feel jealous of people who had children that were developmentally on time and not have to go through what we go through, but you do grow out of it a little. Now all I think about is how lucky their children are that they don't have to go through these surgeries because I would give everything I have to not have Andrew endure all he has had. But trust me in time, it will get better and those feelings will not be there as much. I do think you will continue looking into strollers, because I do. I think it is only natural to be curious, which is what we take offense at sometimes. Kind of contradictory, don't you think? Well, I just wanted to let you know that it is not weird and that you are not the only one.

Lynn ========================================================================= Date: Mon, 18 May 1998 17:01:04 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: Thornq <Thornq@AOL.COM> Subject: Re: Helmet questions revisited Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Resa,

I can't imagine that a helmet would directly cause a language delay. But ofcourse the ears should be cut out so that the child can hear. That is the only thing I can imagine would cause a language delay. The fact that the child can not hear the words or people talking, so maybe that is what that woman was talking about. But I wouldn't worry about it too much, just be cautious about the sweating. I don't want what happened to Andrew happen to your little one. But ofcourse you will probably have a better helmet than Andrew. Ours was a general helmet that would fit anyone. They just inserted pads to fit his head.

Talk to you later. Good luck with the surgery, I'm sure everything will be fine.

Lynn Thornquist ========================================================================= Date: Mon, 18 May 1998 17:05:35 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 cran