========================================================================= 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 craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Thornq <Thornq@AOL.COM> Subject: Re: Sarah's walking! Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Christina,

Don't worry about Zoey walking. Andrew just started walking when he was 15 or 16 months. It will come. The one thing that I did was just let it happen. Sometimes that is very hard, but you need to let things happen the way they do.

Lynn ========================================================================= Date: Fri, 15 May 1998 13:34:35 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: William Amerman <jamerman@UTI.COM> Subject: aperts in Iowa MIME-Version: 1.0 Content-Type: text/plain; charset="us-ascii" Content-Transfer-Encoding: 7bit

Christine, The Iowa border is only two hours from my house.If she lives anywhere new Davenport, she is now far from us. My door is always open. Please relay this to her and if she is ever wanting to come up this way, have her call. My number is 815-942-9285. We are roughly 24 miles SW of Joliet. Judy ========================================================================= Date: Mon, 18 May 1998 21:28:24 GMT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: John Brumfitt <john@BRUMFITT.DEMON.CO.UK> Subject: Mid-face/forehead advancement MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 8bit

Has anyone any information/advice/feelings on mid-face/forehead advancement?

James has Aperts and is almost 10 years old, he has had the usual cranio surgery at 10 months. He has also had upper airways re-constructed 12 months ago. He has had nothing purely cosmetic on his face.

It has been pretty heartwrenching over the last 10 years to see people staring,laughing and a host of other unbearable experiences once outside the protection of our own village, as I am sure most of you will have exprienced.

We have coped with this quite well over the years, mainly because we knew that James was unaware of peoples' reactions to his differences and that was all that mattered.

However, now 10 years on we have a different senario, James for the past year or so has began to realise what his differences are and what they mean to people. He asks us why do people stare at him,he knows why,but this is difficult for him to comprehend, consequently James reacts by hiding in his bedroom or taking it out on us.

We have now decided after many discussions that we need to intervene with nature at this time. We don't want him to suddenly look different when he is sixteen, too much could have been lost by then.

Can anyone please share any information or feelings, we see the surgeons in July.

Thank you Angela and John in England ========================================================================= Date: Mon, 18 May 1998 17:34:04 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: Hello again Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Elizabeth,

You can join the picture exchange very easily. All you have to do is post your address on the listserv and we will send you pictures. Some of us, like me, are a little behind and waiting for their pictures to be done. I believe there are a total of 50 names by now. So get some good pictures of Albita's hands so we can see. I too remember how wonderful it was to see Andrew with 5 fingers on each hand. We had two surgeries before that was a reality. But now that it is, Andrew uses his fingers beautifully. We still have OT and we are working on manipulation of certain things, but he is improving tremendously.

Here is the list of names for both you and Marjorie.

Rachel Fletcher 3900 Vernon Memphis, TN 38122

Janine Krebs 187 Rhode Island Avenue Massapequa, New York 11758

Andrea Gartner 11394 Royal Tee Circle Cape Coral, FL 33991

Denise Graham 1030 Fairfield Pike Shelbyville, TN 37160

Ann Luxton 6 Peter Mulgrew Street Avondale, Auckland 7 New Zealand

Robin Hill 70 Woodmoor Newnan, GA 30263

The Bacon Smith Family 100 Clarendon Road, NW Calgary, Alberta Canada T2L OP3

Carol Graves 370 Oakland Road Madison, AL 35758

Steve & Stacey Bell 8122 New Cut Road Severn, MD 21144

Christine Clark Apert Support & Information Network P.O. Box 1184 Fair Oaks, CA 95628

The Irvins 47 South Hempstead Road Wasterville, OH 43081

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

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

Joanne Lindamood 1533 Regent Avenue Springfield, OH 45503

Raquel Miller 16703 Redwood Way Weston, FL 33326

Judy Amerman 1035 E. Fairview Avenue Morris, IL 60450

The Sieberts 5226 Walnut Peak Court Kingwood, TX 77345

Felipe Ize 124 Brumley #10 Stillwater, OK 74074

The Jennerjohns 6987 Ridgetop Drive N.E. Keizer, OR 97303

The Smiths 1538 Morgan Road San Bernardino, CA 92407

Dori Jefferson 83 Pine Lane Murphysborol, IL 62901

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

Quentin Zaengle 119 Tudor Drive North Wales, PA 19454

The Bailey Family RR1 Box 74 El Paso, IL 61738

Leanne Maclean RR2, Site 4, Box 35 Onoway, Alberta Canada T0E IV0

Roxanne Chan 16240 East McGill Road La Mirada, CA 90638

ViVi Zhang 2279 Pinehaven Drive Niskayuna, NY 12309

Ellen Kelley 411 Spring Mill Road Anderson, IN 46013

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

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

Mark & Michell Smith 208 Connecticut Avenue Warren, PA 16365

Morgan Kauje Mcgahan 11 Elsway Road Short Hills, NJ 07078

Jones Family RR3 Box 275 Middleburg, PA 17842

LeCara Family 8907 Gayquin Houstan, TX 77088

Foster Family 1335 Sanderson AVenue Scranton, PA 18509

Diane Youngblood 445 Home Hollow Road Culleoka, TN 38451

Royn Johnston P.O. Box 25633 Eugene, OR 97402

The Contrinos 7310 Norman Road North Tonawanda, NY 14120

Marianne Camous 412 Sycamore Street San Carlos, CA 94070

Margaret Lucker c/o Joana Magno 811 Moaniala Street Honolulu, HI 96821

Rene Trait 1909 Marten Avenue Cornox, B.C. V9M 2J9 Canada

Nate Finch 10 Field Road Lexington, MA 02173

Christina Mathis 7735 Branston San Antonio, TX 78250

The Kilner Family 6571 Sand Wedge Court Alexandria, VA 22312

Sara Younkin P.O. Box 534 Lewisburg, PA 17837

Belinda Vicars 993 North Aspenway Layton, UT 84040

Shannon & Lori Parks 19270 Coal Valley Street Marion, IL 62959

Carol Hamzsak 2 Woomera Street RYE VIC 3941 Australia

Jenn Graham 6220 7th Avenue North St. Petersburg, FL 33710 ========================================================================= Date: Mon, 18 May 1998 17:40:30 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Thornq <Thornq@AOL.COM> Subject: Re: Mid-face/forehead advancement Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Angela & John

My son Andrew had his frontal advancement when he was 8 months old. I do not believe that anything is cosmetic if it aids in the self-confidence of our children. Mental anguish is not cosmetic. Andrew looks much different now than he did before his surgery. It made a big difference in his appearance, and I have to say that less people stared once it was done. Good luck with your decision.

Lynn Thornquist Thornq@aol.com ========================================================================= Date: Mon, 18 May 1998 15:03:24 -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: Just ramblin'! Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

Thanks Brenda, I think the Plum is a cutie too, but then I am just a little biased!!! :-) Caden is sleeping a little longer at night now. We got lucky Saturday night 6 hours!!! Yeah!!! I was very shocked when he woke up at 6 in the morning instead of 4. Were making progress! :-) Now if he can just get that routine on a regular basis!

Hope all is well, Hugs, Robyn

p.s. we got pictures send out to the 7 families that were added to the list later. I will continue to send more pictures out to people as they are added - 2 more new ones today! The list is growing!!! This is great!

At 10:01 PM 5/15/98 EDT, you wrote: >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: Mon, 18 May 1998 18:08:13 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: Camous <Camous@AOL.COM> Subject: Re: Mid-face/forehead advancement Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

In a message dated 5/18/1998 2:27:36 PM Pacific Daylight Time, john@BRUMFITT.DEMON.CO.UK writes:

> outside the protection of our own village

John and Angela, The above line sort of stood out for me - I wonder if he's actually have an easier time in a city where there were lots of people who all look different from each other by virtue of age, dress, race, physical characteristics, etc. Often I think we fool ourselves in thinking that smaller groups afford more protection when what they actually offer is more homogeneity. Having recently moved to one of the most diverse cities around (San Francisco) I realize again the value in that for Evan. Acceptance on one form of difference, be it in thought or physical characteristics seems to lead to acceptance of others. As far as "cosmetic" surgery, few procedures are truly cosmetic. Surely there will also be some functional benefit or limitation derived. As with ANY surgical procedure, it boils down to a risk-benefit ratio. You have to decide as a family what level of risk is acceptable for what level of benefit. Your surgeon can and should help you sort this out. It's never easy!

Good luck!

Marianne ========================================================================= Date: Mon, 18 May 1998 15:10:12 -0700 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Robyn Johnston <robyn@ORDATA.COM> Subject: Re: Checking in before surgery Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

Hi Resa, I hope all goes well with Mitchell. I hope he gets over his bout of pneumonia quickly! We will be sending good thoughts and praying for you! Try to get some sleep now, before his surgery. I know it is easier said than done with presurgery nerves! You will need all the rest you can get so you can take care of your precious kiddo in the hospital. Good luck with everything. It will be over before you know it.

Hugs, Robyn Johnston

> ========================================================================= Date: Mon, 18 May 1998 19:06:09 -0400 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jack and Raquel <jara1@BELLSOUTH.NET> Subject: (no subject) MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

Lynn,

I guess with time it will get better and I no longer will look at those strollers. It doesn't always happen to me I guess it just happens on days when my defenses are low.

But we must keep thinking happy thoughts and thank God everyday for our children.

Raquel... ========================================================================= Date: Mon, 18 May 1998 20:12:22 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: GSieb91515 <GSieb91515@AOL.COM> Subject: Re: Hello again Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Elizabeth,

We are so glad to hear that Albiya's surgery was a success and that you have met so many new friends. We will be thinking of you and please send a mailing address where we can send you Jonathan's picture.

Brenda Houston ========================================================================= Date: Mon, 18 May 1998 18:04:01 -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: Feet!!! MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

Hi Lynn,

Yes, Felipe had feet surgery but not to separete his toes. What happend was that Felipe's big toe on the left foot was bent to the outside. Now, the big toe on the right foot was just a little bit bent. What the doctor did was, removed the big toe on the left foot, because there was no other way to put it back on it's place. Then the doctor straightened the right big toe, by removing the second toe. This was no problem since Felipe was born with six toes on each foot. Now he has five toes on each foot and he is doing great!!! The main reason to do the surgey was because we were having problems to find shoes for him. We used to buy two sizes bigger but it didn't solve the problem for long.... Now, about the separation of the toes, our doctor said that there is no benefit at all on separeting them. The main reason is that the feet get wide and the scares hurt when walking. He also said that if the toes were separated, then we would be in trouble finding shoes.

The Ize's.

Thornq Wrote: > > 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 20:26:08 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: GSieb91515 <GSieb91515@AOL.COM> Subject: Re: Just ramblin'! Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Christina-

The address is 6560 Fannin, Suite 800 Houston, TX 77030 and the phone is (713) 798-6141. Dr. Shenaq's nurse is Lisa and she could really help with his background etc.

Let me know if you are coming this way and we will plan to meet you there.

Brenda ========================================================================= Date: Mon, 18 May 1998 20:27:43 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: GSieb91515 <GSieb91515@AOL.COM> Subject: Photo Exchange Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Hi everyone!

Well we finally mailed out Jonathan's pictures and I realized afterwards that I made a boo boo in his letter. He has actually had 4 surgeries to date with his next scheduled for 6/5.

Good luck to Jordan on Monday (and mom and dad too). We will praying for you. I also have listed the following upcoming surgeries:

Mitchell's cranial on 5/21 Billy's thumbs on 5/22 Emily's palate on 5/22 Baby Vicar on 5/28 (I'm sorry I only have Belinda's name recorded) Nicole's on 6/11 Carman Rae's on 6/12

Are there any I have missed or incorrect dates? I try to keep this current for our nightly prayers.

Also, we have received the most darling photos in the past week or so. I haven't had time to comment on each one as they arrive but they are all beautiful and Jonathan has really enjoyed them too. He holds the photo (very carefully with mom's help as to not slobber all over them) and really studies them. He doesn't want to give them back to me either. But I pursuade a little trade off with a cheerio or so.

Roxy's outfit looks just like my daughter Melissa's school uniform at the Christian School of Kingwood. Does she attend a christian school as well? I'd like to hear more about your experiences/decisions with regard to schooling. E-mail me if you like at GSieb91515@aol.com.

Nicole and Morgan's hands look so good. What a couple of cutie pies. Lisa, I love the crewel fabric pillows. I'm an interior designer so I noticed them right away.

The other cutie pies we have received since our last update are Seth,Sarah (hope you are feeling better), Daryl, Amy, Nick, Jacob, Vivi (love those big brown eyes), Joseph and Nate. Thank you all. We look forward to next week's mail.

Brenda Houston

P.S> Just received another cutie -- Courtney Ruth-Ann. ========================================================================= Date: Mon, 18 May 1998 20:17:10 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: GSieb91515 <GSieb91515@AOL.COM> Subject: Re: Question for someone! Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Yes, I read the note. I'm still waiting for her to introduce their family and know she when it's the right time for her. She has been such a comfort to our family since we met them at Dr. Shenaq's office and saw what a great job he had done on Kimberly's hands and feet. Will Kris be in ICU or on the regular pediatric floor? Let us know where we can meet up.

Thanks. Brenda ========================================================================= Date: Mon, 18 May 1998 21:12:27 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: publishing pictures Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

It's Christina, Zoey's Mom here, publishing her picture is fine with us! Christina from Still Hazy San Antone ========================================================================= Date: Mon, 18 May 1998 21:30:49 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: ChMathis <ChMathis@AOL.COM> Subject: Re: Just ramblin'! Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Raquel, I just thought I'd let you know that I still do the same things. I also am wondering if all these parents appreciate how wonderful their children are and how blessed everyone who has healthy children is. When I take Zoey out, I have to take oxygen, monitors, suction machines...etc, etc. I guess I'm envious of those who don't. I hope this feeling goes away with time...Just thought I'd share. Christina Mathis ========================================================================= Date: Mon, 18 May 1998 21:21:32 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: ChMathis <ChMathis@AOL.COM> Subject: Re: more pictures Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Zoey's Mom here, I've gotten pictures of Roxy, Nate, Nick, Amy, and little Carmen Rae. Thank you all, they all look so great! I've been a little behind posting those I've received pictures of, then of course the listserve wasn't working, so here I am catching up. Zoey's pictures went out today, so be looking for them. My five year old, Tia, helped me put the address labels on, so they may look a little crazy. And two people will get their's a little later than the others. I put a families address label as one of the other families return address, so I have to redo. Not to fret, I will correct quickly. Bye for now! Christina, Zoey and Tia Mathis From the Crazy state of Texas ========================================================================= Date: Mon, 18 May 1998 21:15:52 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: ChMathis <ChMathis@AOL.COM> Subject: Re: Sarah Yenney Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Hooray for Sarah! I'm very glad her surgery went well, keep up the good work! Christina and Zoey and Tia Mathis From Hazy San Antone ========================================================================= Date: Mon, 18 May 1998 21:25:00 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> Subject: Re: Pictures Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

The Mathis' have received cutie Nicole's picture. Thanks! Christina, Zoey, and Tia Mathis From San Antonio ========================================================================= Date: Mon, 18 May 1998 21:42:24 +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 Family,

Welcome back Elizabeth! I have been praying for Albita and you and hoping you were well. Congratulations to Albita, Sarah and Carmen Rae for all the great successful accomplishments! To answer your question elizabeth, I did get a new job! I am working as an activity coordinator in a retirement community. I am helping our senior citizens with their daily activities. I love it!

I will be thinking of all of you, as I always do.

Joanne, beautiful weather in Ohio! ========================================================================= Date: Mon, 18 May 1998 21:33:30 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: ChMathis <ChMathis@AOL.COM> Subject: Re: WANT TO BE ON PIC. LIST Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Congratulation to little Levi! I'm happy that he came through his surgery and is doing fine. I'll add them to our list of picture exchangers. Christina, Z and T Mathis Being lazy tonight! San Antone ========================================================================= Date: Mon, 18 May 1998 21:42:33 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: ChMathis <ChMathis@AOL.COM> Subject: Re: Thanks for all the help Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Zoey's Mom here, just wanted to give you a shoulder to cry on. Zoey's had pneumonia three times and what sticks out in my head, when I asked the doctor where she possibly could be picking it up from, said "stuffed animals are really bad for carrying little bugs". Not saying that taking all of the stuffed animals away is going to solve the problem, but just wanted to let you know. Zoey has always hated stuffed animals anyway, but her big sister is constantly trying to get her little sister acquainted with them. I know it's very frustrating and have cried many times over this. Hang in there, Resa. I'll be praying for your little one. Christina (Mathis) San Antonio ========================================================================= Date: Mon, 18 May 1998 21:55:22 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: ChMathis <ChMathis@AOL.COM> Subject: Re: Helmet questions revisited Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Zoey's Mom here, and am listening to the discussion on helmets, and can't wonder what the helmets are for? Zoey doesn't have one, will she? Has it something to do with surgery? Christina Mathis San Antone ========================================================================= Date: Mon, 18 May 1998 19:02:18 -0400 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jack and Raquel <jara1@BELLSOUTH.NET> Subject: Midface/forehead advancement MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

Hi Angela & John,

My name is Raquel Miller my husband is Jack and we have 4 kids our youngest is Nicole 7 months with Aperts. I can only tell you my opinion on this matter.

My husband and I will do whatever we can to help our daughter have a normal life. So that will include having whatever surgeries necessary that will make her look better and feel better about herself.

Nicole will undergo her first cranial surgery which the doctor calls (cranial vault remodeling & orbital advancement) next month June 11th. If all goes well according to the doctor she will have her next cranial surgery at around age 6 which at that time the doctor says she will look like a normal child hopefully no traces of Apert. Then he mentioned that at around 13 years of age she will probably need jaw surgery and braces, but that is not something that any normal teenager wouldn't need to have done.

Go for it you child deserves it, remember you will not always be around for him and I know you would want to feel that you did all you could to help him feel better about himself. We unfortunately live in a cruel world and we cannot escape from it. Right now we can protect Nicole but once she starts school we can no longer be there for her and it kills me to think what some kids might do or say. So hopefully by the time she starts school she will look better and can feel good about herself.

Thats just my opinion and my 2 cents worth....

Keep us posted..

Raquel Miller from sunny Florida.... ========================================================================= Date: Mon, 18 May 1998 22:34:29 -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: Re: publishing pictures MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit

Not a problem for the Bailey Family (Jacob). I've also been showing these pictures to my friends at work. They are a wonderful support group for me and like to know what's going on with Jake and want to learn more about Apert's.

Laurie

---------- > From: baconsmith <bluenose@TELUSPLANET.NET> > To: APERT@LISTSERV.AOL.COM > Subject: publishing pictures > Date: Saturday, May 16, 1998 4:46 PM > > 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: Tue, 19 May 1998 01:20:35 +0000 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Comments: Authenticated sender is <jgibson2@POP.erols.com> From: Judy Gibson <jgibson2@EROLS.COM> Subject: Re: Mid-face/forehead advancement In-Reply-To: <3561a268.1260952@post.demon.co.uk> MIME-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7BIT

> From: John Brumfitt <john@BRUMFITT.DEMON.CO.UK>

> Can anyone please share any information or feelings, we see the > surgeons in July. >

This is not nearly as serious as the sort of surgery to correct for Apert, of course, but my oldest had a minor deformity of one ear (an extra skin flap -- barely noticeable if I let his hair grow a little) . I'd decided when he was born to wait until he was able to participate in the decision to have it corrected. It's amazing how early some kids are aware of differences -- Rob started tugging at his ear when he was only 4 years old. I asked what he was doing. His reply: "I'm trying to take this off." It broke my heart.

A few months later, he had some non-elective surgery done and we were able to combine the procedures. I'm glad we had that choice, so we didn't have to opt for anesthesia for just the cosmetic procedure. I really wanted to wait until he was older for that -- even with his awareness of the difference.

Anesthesia is scary even for very minor procedures like that one, so I know it must be enormously difficult to elect a cosmetic procedure that is so much more involved. I don't think you'd be asking for input here unless you wanted support, though. The final decision has to be yours, but it seems that your son is ready to discuss the realities of the procedure -- and hopefully to cooperate in the aftercare if you decide that it's time to have it done.

Judy G. ========================================================================= Date: Tue, 19 May 1998 08:39:14 -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: "Zaengle, Joseph D" <Joseph.Zaengle@UNISYS.COM> Subject: Questions on Tonsils/Adenoids MIME-Version: 1.0 Content-Type: text/plain

Quentin's sleep study came back positive for obstructive sleep apnea - as we expected, I guess. The recommended course of action from CHOP's craniofacial team's ENT is removal of tonsils/adenoids. He's 5. I remember reading something here about the effects of this surgery on speech. I think I remember someone saying it becomes more nasal. So we'd like to hear from anyone whose child had this surgery at about age 5 or so. Thanks! Joe and Anne ========================================================================= Date: Wed, 20 May 1998 08:30:14 -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: Alice Lynch <goddess@CAPITAL.NET> Subject: Re: publishing pictures MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit

Dear Pat:

My son is Colin Lynch and we're on the picture exchange list. I certainly don't mind you using Colin's picture. I think it's a great idea and the more people who know and see and understand, the better for our children.

Good luck with your album. I've been sending pictures to people as I receive them. It's easier for me to do them in small groups. If I haven't sent yours out yet I'll get right on it.

Alice Lynch

---------- > From: baconsmith <bluenose@TELUSPLANET.NET> > To: APERT@LISTSERV.AOL.COM > Subject: publishing pictures > Date: Saturday, May 16, 1998 5:46 PM > > 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: Mon, 18 May 1998 19:52:57 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: Checking in before surgery Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Resa-

Good luck with everything. We will be praying for Mitchell to come through with flying colors and recover quickly. I know what a nerve wracking surgery this is. We just went through it a couple of months ago. It is even harder (I think) when you have to travel away from home and leave the other kiddos in care of others. We wish you all the best and look forward to an update when you return.

God Bless!

Brenda Houston ========================================================================= Date: Mon, 18 May 1998 17:00:02 -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: Scott Pengelly <scottp@EUGENE.COM> Subject: Congratulations: Scott Comments: To: AOL User <MHTeach102@AOL.COM> Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

Dear Elizabeth:

Congratulations to you, your family and Albita. Thanks so much for your letter of good news. I bet it must feel good to be back home again.

All the best, Scott Scott Pengelly Eugene, Oregon U.S.A. ========================================================================= Date: Tue, 19 May 1998 10:39:14 -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: 7bit

Hi, all,

We have received more pictures and they were from: Nick, Nate, Ceci, Roxy. Thanks a lot!

Qing ========================================================================= Date: Tue, 19 May 1998 12:14:12 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: Jenngram <Jenngram@AOL.COM> Subject: Re: .. Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Joanne,

Please give my name to Margot..although I can not promise promptness..it will make it eventually

Pat, feel free to use Jordans picture if you wish

Well, we made it back..relatively in one piece (Jordan of course has a few extra free pieces now) His doctor opted..to release the thumb and pinky on his right side instead of thumbs bilaterally. A decision made once he was in the OR..something to do w/ graft sites, sutures.....blah, blah, blah...Anyway, he came through fine..quite the trooper. And is much better now that hes in his own environment. Hes still trying to figure how to get comfy..and we have some codeine to help. Joe said last night his first words were going to be morphine, as opposed to mama or dada. Since he already says dada..I'm thinking "dada morphine" may be more like it.

So, we'll see how the healing goes. Thanks for everyones thoughts and prayers. My ulcer should heal in time for the next surgery June 26. Hope all the remaining surgeries this week are going well. Please keep us posted!!!

Jenn(Tampa/St. Pete) ========================================================================= Date: Tue, 19 May 1998 12:20:28 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: Jenngram <Jenngram@AOL.COM> Subject: Re: Just ramblin'! Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Well, I know how YOU FEEL Raquel..yesterday, as Jordan was in surgery I kept getting the "why me's"..Seems it happens mostly while in the family waiting room for some surgery or test. Joe then commented on how it still all feels so surreal...like an outer body experience. Its weird..perhaps a coping mechanism, b/c day in day out we just live with it, handle it, and go on. Then when they are in the hands of someone else, we're able to step back and evaluate things, and maybe w/ all the fear we let our guards down. who knows..but like everyone else..there are good days and bad ones..here hoping for more good then bad!!!!

Jenn(Same ole' hazy, dry mess in Tampa/St. Pete) ========================================================================= Date: Tue, 19 May 1998 11:42:01 -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: Mid-face/forehead advancement MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit

Hi John,

Ruth Contreras here, My daughter Kris is 14 years old and will be 15 in July. She has had several facial surgeries, but this June she will have a midface reconstruction. We have been through a whole lot to get here. But you know, you are absolutely right in saying that these kids are oblivious to the fact that people are staring, then they get to that point and your heart just breaks. One time while at Mervyns 3 little kids stared at Kris, then they laughed (or so, she says, my other daughter, Katie, said they did not laugh, but merely smiled at her) but she took as a laugh and ever since then I can not get her to go to Mervyns with me. Or CiCi's pizza. or one particular mall, She gets so hurt that she stops eating. Or doesn't want to shop anymore! " I wish parents would teach these kids some manners!" Is her favorite verse. We tell her "as long as you have manners, you don't worry about anybody else" Then I find myself making faces at these people. I must be rude. But I don't care. They were being rude to me first! Do I sound like a kid or what?

I know what your'e saying. It Hurts. It will soon be over. I hope this surgery turns out to be a miracle. For my childs sake. Praying for you.

Ruth

---------- > From: John Brumfitt <john@BRUMFITT.DEMON.CO.UK> > To: APERT@LISTSERV.AOL.COM > Subject: Mid-face/forehead advancement > Date: Monday, May 18, 1998 4:28 PM > > Has anyone any information/advice/feelings on mid-face/forehead > advancement? > > James has Aperts and is almost 10 years old, he has had the usual > cranio surgery at 10 months. He has also had upper airways > re-constructed 12 months ago. He has had nothing purely cosmetic on > his face. > > It has been pretty heartwrenching over the last 10 years to see people > staring,laughing and a host of other unbearable experiences once > outside the protection of our own village, as I am sure most of you > will have exprienced. > > We have coped with this quite well over the years, mainly because we > knew that James was unaware of peoples' reactions to his differences > and that was all that mattered. > > However, now 10 years on we have a different senario, James for the > past year or so has began to realise what his differences are and what > they mean to people. He asks us why do people stare at him,he knows > why,but this is difficult for him to comprehend, consequently James > reacts by hiding in his bedroom or taking it out on us. > > We have now decided after many discussions that we need to intervene > with nature at this time. We don't want him to suddenly look > different when he is sixteen, too much could have been lost by then. > > Can anyone please share any information or feelings, we see the > surgeons in July. > > Thank you > Angela and John in England ========================================================================= Date: Tue, 19 May 1998 11:52:10 -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

Brenda,

Me again! Dr. Stal said that she most likely would be in ICU or another type of special care for a day or so then to a regular room. I think the best thing to do is look us up in information. Don't you?

---------- > From: GSieb91515 <GSieb91515@AOL.COM> > To: APERT@LISTSERV.AOL.COM > Subject: Re: Question for someone! > Date: Monday, May 18, 1998 7:17 PM > > Yes, I read the note. I'm still waiting for her to introduce their family and > know she when it's the right time for her. She has been such a comfort to our > family since we met them at Dr. Shenaq's office and saw what a great job he > had done on Kimberly's hands and feet. Will Kris be in ICU or on the regular > pediatric floor? Let us know where we can meet up. > > Thanks. > Brenda ========================================================================= Date: Tue, 19 May 1998 13:29:56 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: Photo Exchange Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

In a message dated 98-05-19 09:29:40 EDT, you write:

<< Baby Vicar on 5/28 (I'm sorry I only have Belinda's name recorded) >> Her name is Sarah :)

Belinda ========================================================================= Date: Tue, 19 May 1998 17:35:30 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Thornq <Thornq@AOL.COM> Subject: Re: Helmet questions revisited Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Christina,

Andrew had a helmet after his first cranial surgery. He had very little bone in the back and they wanted to protect the new bone and back of the skull that they built. So he wore a helmet for only a week. It would have been longer if he had not gotten necrosis from it. But I have seen many children at the hospital with these white helmets on. I believe it is because they feel that it may shape the head a little, but it really depends on your doctor. If you have any more questions, please feel free to ask.

Lynn Thornquist Thornq@aol.com ========================================================================= Date: Tue, 19 May 1998 19:01:26 -0700 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Robin MacDonald <macdonal@GOLDEN.NET> Subject: Niagara Falls MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

Is anyone interested in a group get together in Niagara Falls this summer? Lots of activities for children available...and the place is crawling with hotels.

For you US residents..your dollar will stretch a long way here in Canada. And for those so inclined, there is a casino in Niagara Falls Ontario.

If so, you can e-mail me privately at macdonal@golden.net, and I will be happy to co-ordinate. Please include your own private e-mail address as well as a preferred time in the summer.

Robin MacDonald ========================================================================= Date: Tue, 19 May 1998 19:47:37 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: Yonstein <Yonstein@AOL.COM> Subject: Re: Checking in before surgery Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Resa:

Good luck to you an Mitchell on his surgery Thursday. hope all goes well.

Janine Krebs ========================================================================= Date: Tue, 19 May 1998 21:08:22 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Yonstein <Yonstein@AOL.COM> Subject: Re: Just ramblin'! Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

I just wanted to add my 2 cents to this subject. Emily is almost 10 months old and I still periodically ask myself the "why" question. I probably will do that on and off all of her life. I think now it's just a "why" question as to why does she have to endure so much and go through so much as opposed to why did this happen to me, which is how I felt right when she was born. Now it's all for her. Why does she have to suffer, etc.

Anyway, I've kind of resolved myself to dealing with it forever. I also believe that I will nevery truly know the reason why because there are many reasons Emily was given to us. She has already changed our lives in so many ways, all for the better. She has touched so many lives in such a short period of time.

Anyway, that's my thoughts on it.

Janine ========================================================================= Date: Wed, 20 May 1998 13:33:17 +1200 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Howard & Ann <howrdnan@IHUG.CO.NZ> Subject: Re: Niagara Falls Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

Hi Robin

At 07:01 PM 19/05/98 -0700, you wrote: >Is anyone interested in a group get together in Niagara Falls this >summer? Lots of activities for children available...and the place is >crawling with hotels.

We would love to join you there, Niagara Falls sounds so exotic and romantic!! Now, if I could just figure out a way to get there without having to get on an aeroplane and sitting squished up for 10-12 hours.........

Maybe one day! It is a nice dream.

Good luck with your plans

Ann NZ ========================================================================= Date: Wed, 20 May 1998 13:33:16 +1200 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Howard & Ann <howrdnan@IHUG.CO.NZ> Subject: Re: Mid-face/forehead advancement Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

Ruth

>We tell her "as long as you have manners, you don't worry >about anybody else" Then I find myself making faces at these people. I >must be rude. But I don't care. They were being rude to me first! Do I >sound like a kid or what?

I have been known to walk up to people like that, and with a pleasant look on my face (I don't quite reach the smile stage) ask "Is there anything you want to ask me?" They usually say "No", look terrified and embarrassed, and then mutter to each other once I am gone. However, once the child was open enough to say "Yes" and then we talked about it. Well worth the effort as long as it is one of my strong days.

I don't think it ever stops being a painful experience though.

Regards, Ann NZ ========================================================================= Date: Wed, 20 May 1998 13:33:12 +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: Advanced Language & Other Folks Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

Well done Jordan for getting through the surgery with flying colours. I bet it takes Mum and Dad longer to bounce back!

>codeine to help. Joe said last night his first words were going to be >morphine, as opposed to mama or dada. Since he already says dada..I'm thinking >"dada morphine" may be more like it.

I am sure our children grow up knowing words other children have never heard. Amy used to anaesthetise her dolls instead of putting them to bed. Fortunately she now knows the difference!

Amy had her first visit to Brownies last night. Initially she was not the least bit interested but once we identified why (other people staring) and talked about it she agreed to go. Most of the kids just accepted her but when they were meant to hold hands in a circle one little darling refused to hold her hand (eventually held her wrist through her sweater instead), and the one on the other side of her kept picking up her hand and staring at it with an exagerrated "what on earth's THIS?" look on her face. I held tightly to my seat and stayed where I was.

Amy thoroughly enjoyed herself and is keen to go again - reckoned she didn't notice the two girls that got my defence mechanism into top gear. As a singleton she needs someone other than Mum and Dad telling her how to do things, and an opportunity to meet other children.

Next week I will be talking to the children about Amy's differences, and I think I will tie it in with what Brownies are meant to learn - acceptance of other people!!

Keep smiling Ann NZ ========================================================================= Date: Tue, 19 May 1998 21:34:07 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: NephiRose <NephiRose@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 98-05-18 09:45:21 EDT, you write:

<< 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 do know what you mean. I remember when I found out during my pregnancy that Sarah was going to have Aperts. The first thing I did was seek information. Of course, not much was found. I saw a few pictures of faces, they looked okay to me. A little odd, but okay. Then one day, my husband brought home an article on Aperts with detailed pictures of hands. When I looked at it, I thought "Oh my god, I'm giving birth to a pig!" on the account of the way the hands looked similar to a pig's foot. I really grieved at that moment. I thought I was a horrible mother for even thinking that. However, when Sarah was born, I realized she was much , oh so much more than I ever even dreamed of (definitely not a pig!) :^)

Below is part of an article I picked up off the internet under "Special in Many Ways". It's long, but it really says what I was thinking about these past two days. Two years later, I don't regret having Sarah. The journey's hard, the sights along the way is definitely worth seeing.

"Acknowledge the grieving process. I cannot stress how important this is. A disability is a loss in many ways. Dreams and freedom are lost. Sometimes financial burden is greatly increased. Marriages are stressed with the time and labor involved with caring for a handicapped child.

There is a well known essay that circulates periodically throughout the community of the disabled that's a pretty good analogy of what it feels like to discover that your child has been labeled handicapped. The story goes something like this: a traveler is on a plane flight to Italy and is greatly looking forward to a long planned trip to Rome and all the wonderful sights there; but instead the airplane lands in Holland! Now, Holland is nice, but it is not Rome. The traveler is confused and disoriented but after a while in Holland the beauty of that country begins to be apparent. The flowers, the windmills and the countryside are lovely and pleasing, so the traveler is satisfied with the trip and destination; although it is not Rome, not what was planned on. [

The analogy is that during pregnancy, expectant parents are on a journey that culminates I the birth of a healthy baby to love and nurture. However, to a parent whose child is not healthy, it feels like a hijacking-this is not what the plan was! There is a confusion of feelings about this wrong turn, but as time goes on the parents slowly become oriented to this new reality. After all the baby is their baby, the one expected and long awaited for, the one they love. They learn about their child's uniqueness and hopefully over time they come to accept this reality and are satisfied. A healthy baby would have been wonderful but they can and do love this child.

One reason I like this story is because it speaks to the feelings a parent being cheated when their baby or child is not "normal". I speak about this from the parent's point of view not the child's because the parent's feelings are the ones that surface first. Sure, the child experiences the same feelings of loss as they grow. However, parents have to deal with their feelings first and grieve the loss of that normalcy in their lives before they can teach their child how to accept and cope with their disability."

Hope you enjoyed the article.

Belinda ========================================================================= Date: Tue, 19 May 1998 21:39:07 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Yonstein <Yonstein@AOL.COM> Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Hello All:

CONGRATULATIONS to Sarah Yenney, Levi Parks, Albita and Jordan on successful surgeries. Hope everyone is recoupin nicely. It's nice to hear good news.

It's ok with me showing the photos. It would be nice to educate people if they were interested.

Have a good night.

Janine Krebs ========================================================================= Date: Tue, 19 May 1998 21:39:46 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: GSieb91515 <GSieb91515@AOL.COM> Subject: Re: Rejected posting to APERT@LISTSERV.AOL.COM Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Christina-

Did you get my message re: Dr. Shenaq's address and phone #. I got a rejected message error saying it was sent twice. Let me know if you haven't received it and I will redo the note.

Thanks.

Brenda ========================================================================= Date: Tue, 19 May 1998 21:42:28 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: GSieb91515 <GSieb91515@AOL.COM> Subject: Re: publishing pictures Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Same here. Please feel free to publish Jonathan Siebert's photo.

Brenda Houston ========================================================================= Date: Tue, 19 May 1998 19:39:57 -0600 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: baconsmith <bluenose@TELUSPLANET.NET> Subject: Re: Just ramblin'! Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

Hey folks, not too long ago I told a friend, I don't know why she was given to us(or we were given to her), I only care that she *was* given to us, that she is ours. That's all that really matters. It's a bumpy road getting to that place, but I do beleive I am there.

It's hard isn't it? Pat in Calgary

>I just wanted to add my 2 cents to this subject. Emily is almost 10 months >old and I still periodically ask myself the "why" question. I probably will >do that on and off all of her life. I think now it's just a "why" question as >to why does she have to endure so much and go through so much as opposed to >why did this happen to me, which is how I felt right when she was born. Now >it's all for her. Why does she have to suffer, etc. > >Anyway, I've kind of resolved myself to dealing with it forever. I also >believe that I will nevery truly know the reason why because there are many >reasons >Emily was given to us. She has already changed our lives in so many ways, all >for the better. She has touched so many lives in such a short period of time. > >Anyway, that's my thoughts on it. > >Janine > > email to: bluenose@telusplanet.net IM: onlypeach shake and shake the ketchup bottle. none will come and then a lot'll ... unknown ========================================================================= Date: Tue, 19 May 1998 21:43:07 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: NephiRose <NephiRose@AOL.COM> Subject: Re: Advanced Language & Other Folks Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

In a message dated 98-05-19 21:33:41 EDT, you write:

<< Most of the kids just accepted her but when they were meant to hold hands in a circle one little darling refused to hold her hand (eventually held her wrist through her sweater instead), and the one on the other side of her kept picking up her hand and staring at it with an exagerrated "what on earth's THIS?" look on her face. I held tightly to my seat and stayed where I was >>

Personally, I'd like to take the little darling and make her teeth rattle :) Sorry. My Sarah is not even two years old, I can't even imagine the heart break she will have to go through. Of course, right now I'm enrolling my oldes three kids in karate (no one will mess with their little sister) :0) and later hopefully Sarah will want to when she's four. Confidence builder, maybe?

Seriously, though. I am hearing impaired and I using sign language a lot. I've my share of stares and snide remarks. I honestly don't know if anything I did growing up would be any different for my daughter. I had to learn to let it roll of my shoulders. Some people were way cool and was eager to accept and learn about my own disability. And others were narrow minded and were not worth knowing at the time. That was a hard earned lesson I had to learn and my mom, bless her heart, couldn't do it for me. (I wouldn't have minded if she took a few lessons for me, though). I think really all we can do is be there for our kids and help them be flexible.

Belinda ========================================================================= Date: Tue, 19 May 1998 21:44:09 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: NephiRose <NephiRose@AOL.COM> Subject: Re: Mid-face/forehead advancement Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

In a message dated 98-05-19 21:33:41 EDT, you write:

<< have been known to walk up to people like that, and with a pleasant look on my face (I don't quite reach the smile stage) ask "Is there anything you want to ask me?" They usually say "No", look terrified and embarrassed, and then mutter to each other once I am gone. However, once the child was open enough to say "Yes" and then we talked about it. Well worth the effort as long as it is one of my strong days. >>

I agree totally.

belinda ========================================================================= Date: Tue, 19 May 1998 21:44:45 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: ETolson643 <ETolson643@AOL.COM> Subject: Re: The why's Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Even though Tim is 16 years old, I still sometimes wonder "why?" I think that question will always be there, although it is definitely not as important to me as it was when he was a baby. I feel we are totally accepting of Tim as he is...something that happened over time. Sometimes I become selfish about anymore surgery because we love him just the way he is. However, now we must think more about his self-esteem and what he wants and not what I want or don't want. So now when I ask "why?" I am not thinking about why this happened to US, but why it happened to Tim. I think it's a perspective that can only be attained by watching a child grow and develop. Time has healed many wounds and opened many new doors.

Beth Boston ========================================================================= Date: Tue, 19 May 1998 21:47:31 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: NephiRose <NephiRose@AOL.COM> Subject: Re: The why's Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

In a message dated 98-05-19 21:45:44 EDT, you write:

<< am not thinking about why this happened to US, but why it happened to Tim. I think it's a perspective that can only be attained by watching a child grow and develop. Time has healed many wounds and opened many new doors. >>

I agree.

Belinda ========================================================================= Date: Tue, 19 May 1998 23:32:25 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: ChMathis <ChMathis@AOL.COM> Subject: Re: Rejected posting to APERT@LISTSERV.AOL.COM Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Brenda, Yes, thank you, I got Dr. Shenaq's address/phone number. I haven't gathered my thoughts as far as contacting any other doctor's yet, and thanks for the offer, we'll let you know when/if we're coming. Thanks again, Christina ========================================================================= Date: Tue, 19 May 1998 21:21:13 -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: Jenn Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

Jenn and Joe, I am glad you are all recovering after Jordans surgery. I am glad to hear he is doing well. IT was always harder for me, after Brenna's surgeries. I was always a basket case until she was 100% recovered - and then some.

Give that little guy lots of love and hugs! Robyn J. ========================================================================= Date: Tue, 19 May 1998 21:31:24 -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: situations Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

>I am sure our children grow up knowing words other children have never heard. Amy used to anaesthetise her dolls instead of putting them to bed. Fortunately she now knows the difference! >

I just have to share a situation that is somewhat similar...

I took Brenna to get her blood drawn again yesterday. The little stinker shocked everyone. She went directly to the room where they draw her blood hopped up in the chair before I had a chance to sit in it, and held her arm out! The laboratory tech.'s were so shocked. They couldn't believe a toddler was so accepting of this routine! And cheery to boot! WEll... seems she had an alterior motive, she kept saying stickers, stickers. She knows that if she does a good job, she always gets stickers after. :-) It seems that needles don't seem to bother her at all - Of course the EMLA patches do numb the area and they are a true blessing! Most children view needles as a threat - not as a means for a treat! ;-)

>Amy thoroughly enjoyed herself and is keen to go again - reckoned she didn't notice the two girls that got my defence mechanism into top gear. As a singleton she needs someone other than Mum and Dad telling her how to do things, and an opportunity to meet other children. > >Next week I will be talking to the children about Amy's differences, and I think I will tie it in with what Brownies are meant to learn - acceptance of other people!! >

Ann, good job for letting Amy handle the situation by herself. I bet it was hard. It would have beeen for me. Hopefully it will turn into a learning experience for everyone. That is important for our kiddo's to learn. As they grow up they will unfortunately have to deal with rude adults too, so they need to learn how to handle these situations. Good luck with your talk. I bet this group will reward from it. Let us know how it goes.

Hope all is well, Robyn J. ========================================================================= Date: Tue, 19 May 1998 23:49:47 -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: Brett and Heidee Lindsey <blhlfam@JUNO.COM> Subject: Re: Utah meeting

Marianne- I haven't heard back from you about your plans while in Utah. But I didn't get any e-mail for 3-4 days. I don't know if you want to meet on the 26 or the 27??? We are going on vacation on Thurs, the 21. So just let me know as soon as you can. we've cleared either date and are looking forward to meeting you.

Belinda - I must have missed it when you joined the list. I was so excited to see another Utah address! We live in the salt lake area. We are trying to plan a bar-b-que or something at our house when Marianne comes in town, May 26 or 27. I've already contacted another family in orem. You can e-mail me or call 801-280-6508. My third son, Josh has aperts, he was born 11-6-96. We of course use most of the Drs. at Primary and have had great experiences with them. And if this date is bad, we'd love to get together at another time. I read that you are probably moving, but we'd still like to meet before you go. I have never seen another child with aperts (in person) And I know of quite a few in Utah.

Thanks to all of you who share tthose very exciting and happy accomplishments of your angels. It gives me a lot of hope for the furure. I also have a problem with people both youn and old who stare. The way I deal with it depends on the mood I'm in. It's really helplul to me to learn that all of you have these same struggles. Thanks for letting me vent!

Heidee Lindsey Utah ========================================================================= Date: Wed, 20 May 1998 02:43:28 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Charles LeCara <cal@PHOENIX.NET> Subject: aspiration and Tracheostomy MIME-Version: 1.0 Content-Type: text/plain; charset="us-ascii" Content-Transfer-Encoding: 8bit

General question: Has anyone had any experience with their child inhaling fluid or aspirating after the child has had a tracheostomy If so please let us know . Sarah had her tracheostomy done in December 97.The doctors are wanting to install a Gtube to fix this and we like them to try other remedies if possible . Our Sarah has been in the hospital 3 time since she got her tracheostomy each time it because of aspiration pneumonia and it has caused her a lot of pain and suffering.

Please let us know Thank you in advance. Tamara, Sarah and Charles LeCara ========================================================================= Date: Wed, 20 May 1998 08:39:54 -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: Colleen Jones <coljones@PTDPROLOG.NET> Subject: Help! MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit

Hello to all from the Jones family. I usually just lurk around out here but really need some help now with some decisions that we will be faced with in the next couple of weeks. Back in March, Jacob (23 mos) had pneumonia and was hospitalized for a week because of low SATs at night. He got to come home on O2 at night. We eventually got him weaned off for three nights and then he developed a cold/sinus infection and needed back on. He is currently on 1/2 Liter at night. We saw a pulmonologist and he wanted a sleep study done so we did a modified one at home. However, he had another cold and was very congested. The study did show obstructive airway episodes. Yesterday, he had a CAT scan done of nasal passages and it showed severe coanal stenosis (as suspected). Now the major dilema is that he still has not had his palated repaired and ENT doc and pulmonologist feel that his airway maybe compromised if it is closed now. They told us yesterday that probably the best way to go would be to give him a tracheostomy first. Of course I became very upset as I don't understand why now when he only seemed to develop problems at night since the pneumonia. I am not sure I am willing to go the trach route yet unless absolutely necessary. My gut feeling about the night situation is that it is related to the teething process. (He only has 2 teeth). He drools and his nose runs all day and at night all the secretions just accumulate at the back of the throat. When he coughs, his SATs go back up in the 90s. This whole situation has me very upset as we would like to get the palate fixed as soon as possible. Has anyone else run into the situation where a trach was needed later rather than from the beginning. I just feel that having to do that would be like taking a giant leap backwards for Jacob. Any thoughts, comments or suggestions would be greatly appreciated. ========================================================================= Date: Wed, 20 May 1998 08:12:27 -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: "Allison's : GO USA, Inc" <gousa@KC.NET> Subject: Help Reply Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

Hello Jones Family!

The information I am sending may or may not apply, just some thoughts I had.

Shawn, now almost 4 years old had bad obstructive sleep apnea. When he would get a cold, sometimes we would have to get him to a hospital so they could get him oxygen until his cold subsided.

Many Apert children develop obstructive sleep apnea. The one cure for many of these kids is removal of tonsils and adenoids.

The tonsil and adenoids are fairly commonly taken out with children with Aperts. In our home town, they do not have much contact with Aperts, and did not help us very much in trying to get them taken out. Going to St. Louis where they deal with many Apert Children, we were able to find more concern given to this issue and got it taken care of quickly. It has made a world of difference in Shawn, however was a very hard recovery, being the airways were already small, and after surgery swollen.

Another thing that comes to my mind for Jacob is cutting out milk products. You said "He drools and his nose runs all day and at night all the secretions just accumulate at the back of the throat." If you do give him milk, it is known to give similar problems in some kids.

We use a milk substitute called Vitamite, sold at many grocery stores.

If you are giving Jacob milk products, it does not seem like it would hurt to cut them out for a time to see if it helps.

It is my understanding that on going Apnea like our kids sometimes have is very hard on the heart, and can, if left untreated sometimes result in mental retardation.

'Good Luck with Jason and God Blees You!

For The Gospel

Mike Allison and family ========================================================================= Date: Wed, 20 May 1998 09:32:48 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jenngram <Jenngram@AOL.COM> Subject: Re: Just ramblin'! Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

OHHH Robin..I remember too easily that thrill of Jordan waking up at 6am instead of 4am...I also couldn't believe how rested I felt..I thought I'd slept through the remainder of the century. I was ready to get up and tackle the world. Yeah for Caden..and you, dad and Brenna too!!!

Jenn ========================================================================= Date: Wed, 20 May 1998 09:51:27 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: Midface/forehead advancement Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Angela and John,

Just wanted to post my bit on this....my son Jordan is 8 mos. old and had his craniotomy and oribital advancement....and we're working on the fingers.... But I think we have gotten into our minds that some sort of facial surgery will occure prior to school...and we're waiting on growth patterns to determine the need for jaw/teeth surgeries. Like Raquel, we too would do anything for Jordan so he can live as "normal" of a life as possible. The hardest part when he was born, was knowing he would look "different"..and that the human species can be quite cruel at times. So far, here in florida we have had nothing but positive experiences. Perhaps its the diverse cultural aspect of this area...sorta like Marianne said San Fran was...although I doubt Fla. is as diverse as Calif, but we may run a close 2nd.

Anyway, the prospect od surgery is never easy..nauseating to say the least..but we just cross our fingers..hope we're making the right choices, and go into it praying he'll be happier after its over and done with. Having faith and confidence in your doctors helps tremendously. Good luck in making this big decision..I am looking forward to the day that Jordan is old enough to participate in some of this decision process.

Jenn(Tampa/St. Pete) ========================================================================= Date: Wed, 20 May 1998 09:54:55 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: Jenngram <Jenngram@AOL.COM> Subject: Re: Congratulations: Scott Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

elizabeth,

Congratulations to Albita on her new..or rather improved fingers. I CAN NOT wait fro Jordan to have all of his..Our little ones are such troopers..It always amazes me. Also, glad you had such a good experience in our country. Perhaps, we'll get you back more often and for more enjoyable reasons!!

Jenn(TAmpa/ St. Pete) ========================================================================= Date: Wed, 20 May 1998 09:09:32 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: William Amerman <jamerman@UTI.COM> Subject: NIck Amerman & Jacob Bailey MIME-Version: 1.0 Content-Type: text/plain; charset="us-ascii" Content-Transfer-Encoding: 7bit

testing new scanner ========================================================================= Date: Wed, 20 May 1998 13:13:58 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Camous <Camous@AOL.COM> Subject: Re: aspiration and Tracheostomy Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

My son Evan has had a trach since he was 4 weeks old. He has never had a Gtube but several health care providers have expressed surprise at that as if one cannot have a trach without an accompanying g-tube. The risk of aspiration with a trach increases with the presence of gastroesophageal reflux. This is where food and stomach acid go back up the esophagus into the back of the throat where it can be aspirated. Many babies have a mild form of this as evidenced by "spitting up", adults get symptoms of chest pain, heartburn, and acid wash in the throat usually at night.

There are medications that can help this as well as other non-pharmacologic approaches. Meds include H2 blockers like ranitidine (Zantac) or cimetidine (Tagamet), proton-pump inhibitors like omeprazole (Prilosec) <not sure if this is approved for kids> and prokinetic agents such as cisapride (Propulsid). Non-pharmacologic approaches include giving multiple small meals, not lying down right after a big meal, putting 4" blocks under the head of the bed or crib. The tendency toward reflux generally decreases as the child gets older and becomes ambulatory (gravity helps!)

If her aspiration events are from outside sources (ie bathwater, foreign bodies, etc) this can be dealt with by using a humivent or blue trach guard or even a small trach mask. As she gets older, she will get better about coughing things out immediately also. careful suctioning and trach care also decrease the incidence of infection.

As a fellow PA once commented about trachs- "they are easier to put in than take out". I have found this to be true with any invasive device. Once a trach, feeding tune, etc is placed, the physicians are always reticent to remove it as reinstituting it is a real trauma. One year ago, the critical care team wanted to place a nasal-jejunal feeding tube in Evan for nutritional support. I knew they'd never get it past his nose (if air won't go through how can a piece of plastic?? Duh!) and we'd end up with a G-tube. Then would come the battle over trying to get it out. I stood my ground and we explored other options including a more calorie-dense formula, etc. Today at 22 months, he is 30# and too heavy to carry around much! :)

There is a time and a place for feeding tubes but there are also nutritional and developmental implications and all options must be weighed when making the decision. I am fimly convinced that in kids who already require so many invasive procedures, that physicians and others move more quickly toward more before considering all the available options. (Procedures can breed like rabbits!) Ask what they would do if Sarah didn't have a trach but had three episodes of aspiration? Have they done an upper GI series to see if there is any other anatomic cause for reflux or aspiration such as a tracheo-esophageal fistula ("tunnel" between the esophagus and trachea which can occur with a poorly fitting trach)? Also, do they expect this tendency will improve with growth? Can you get by if you hang tough for a few months or so?

These are not easy decisions but get as much information as you can (including a second opinion from a non-affiliated physician) and then go with what feels right.

Guess this issue involves a lot of my "buttons" that have been pushed in the past few years ;) Sorry to go on so long.

Marianne who often has a hard time wearing my "mom" hat and my "health care provider" hat on the same head! ========================================================================= Date: Wed, 20 May 1998 13:40:21 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jenngram <Jenngram@AOL.COM> Subject: Re: stamps Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

I sit here about to send out these pictures and was wondering if anyone knew when the new postage hike goes into effect? I think I remember hearing it was up to 33 cents, but can not remember when it goes into play???? Don't want all htese coming back to me and the post office won't answer the phone...per usual!!!!

Jordans recovering nicely..getting use to being restrained somewhat. Seems the first 2 nights are the worst...as expected. He has now found a comfy position and is taking the nap of the century. Hope he remembers it tonite!!!!!

Hope all is well out there

Jenn(Tampa/St. Pete) Date: Wed, 20 May 1998 13:49:29 -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: test results MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit

Hi all, Sorry it took you so long to download your mail. This photo was taken in April when The Bailey's came to visit. I have spent all morning playingwith the scanner and I still don't know why I ended up in paint. Don, is there a SCANNER BOOK FOR DUMMIES OUT THERE? Judy ========================================================================= Date: Wed, 20 May 1998 15:25:26 -0400 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Don Sears <dsears@SCRS.STATE.SC.US> Subject: Re: test results MIME-Version: 1.0 Content-Type: text/plain

No, by the time you get a scanner, you're a defacto Guru. Congratulations!!!

The reason you wound up in paint is that is what is associated with .BMP files on your computer. The installation of your new software did not change that. In the future, you may want to change the "file type" in the photo software, after you scan but before you save the file, to .JPG which is a very efficient way to store photos (small file size) and therefore makes for easier sending through email. You probably do this when you choose "File, Save As". Your program probably defaulted to .BMP because its usually first alphabetically.

> -----Original Message----- > From: Judy Amerman [SMTP:jamerman@UTI.COM] > Sent: Wednesday, May 20, 1998 2:49 PM > To: APERT@LISTSERV.AOL.COM > Subject: test results > > Hi all, > Sorry it took you so long to download your mail. This photo was taken > in > April when The Bailey's came to visit. I have spent all morning > playingwith > the scanner and I still don't know why I ended up in paint. > Don, is there a SCANNER BOOK FOR DUMMIES OUT THERE? > Judy ========================================================================= Date: Wed, 20 May 1998 16:22:56 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: Utah meeting Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

In a message dated 98-05-20 01:48:15 EDT, you write:

<< We are trying to plan a bar-b-que or something at our house when Marianne comes in town, May 26 or 27. >>

Heidi,

Cool! I'd love to meet you and the others. Count me in. Let me know the details. I have four kids. Are they included or do I need to find a babysitter? Also, is it potluck? I'd like to bring something.

Belinda ========================================================================= Date: Wed, 20 May 1998 12:28:30 +0000 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Comments: Authenticated sender is <jjennerjohn@postoffice.worldnet.att.net> From: John Jennerjohn <jjennerjohn@POSTOFFICE.WORLDNET.ATT.NET> Subject: Re: Help! In-Reply-To: <199805201243.IAA12427@listserv.aol.com> MIME-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7BIT

It may not be much help, but we have found that a BreatheRight strip (extra small size) really makes a difference, especially when Courtney has a cold.

Good luck. ========================================================================= Date: Wed, 20 May 1998 12:36:50 -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: aperts in Iowa MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

Judy,

I forwarded your e-mail to Beth Oppelt. She lives in Dubuque, Iowa. Her e-mail is : BOp1912@aol.com if you would like to get in touch with her.

Thanks for responding!

Christine

William Amerman wrote: > > Christine, > The Iowa border is only two hours from my house.If she lives anywhere new Davenport, she is now far from us. > My door is always open. > Please relay this to her and if she is ever wanting to come up this way, have her call. > My number is 815-942-9285. > We are roughly 24 miles SW of Joliet. > Judy ========================================================================= Date: Wed, 20 May 1998 18:57:46 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Yonstein <Yonstein@AOL.COM> Subject: Re: Help! Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Colleen:

I don't have any info to give regarding the trach situation. I just wanted to tell you that I would be feeling the same way. It seems like you've come so far and it might be a step backward. However, if that is a step that is needed for Jacob, then it's a step forward for him.

Hoping for easier times.

Janine Krebs ========================================================================= Date: Wed, 20 May 1998 20:00:05 +0000 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "J. G. Lindamood" <chanan8@JUNO.COM> Subject: Sensitive

Hello Family!

Congratulations to everyone reaching another milestone this week!

Sensitivity of others seems to be the topic of discussion this week, I want to add my two cents in. My mom and I were on a shopping excursion (now that I am making the BIG bucks!) this past weekend. My step dad (aka Jerk) caught wind that we were going to a store where he needed to pick up some things, so instead of going by himself, he sent a list with mom (lazy jerk). We were to pick up some oil for the car. Mom is absolutely paranoid of making a mistake and having the jerk ridicule her as I know he would do. Anyway, I was reading the bottle of oil to make sure it was what was written on the list. I noticed out of the corner of my eye my mom moving in a wired direction and taking the cart with her. When I gave her the puzzled look, she said people were staring. My first thought was they thought I was out of it for reading aloud the bottle of oil, then it dawned on me the real reason. In a matter of seconds, I said, loud enough for them to hear me "stare back". And I did just that. These people were old enough to know better and if mom weren't with me I would have pulled the "too much glue as a child" comment on them. My point is I didn't notice the people until mom made a spectacle of herself trying to protect me. I guess that's what I want you to hear. As Ann did with Amy (Way to go Ann!) Let your kids develop their own protection from the rude and obnoxious people out there. Most of the time they, as Belinda, will let it roll off their back.

Okay, enough out of me. Joanne, it's still nice here, in Ohio! ========================================================================= Date: Wed, 20 May 1998 16:15:03 -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: APERT SUPPORT & INFORMATION NETWORK MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

TO ALL NEW FAMILIES,

> << 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

If you or your child has Apert syndrome and you would like to get on the mailing list for my newsletter, APERT NEWS (full of information and pictures), just send me your name and address. Your phone number, child's name and birthdate are helpful, too, for my records.

There is no cost to receive the newsletters even if you do not live in the US. I mail to any country. I only ask for donations (of any amount) if you can afford to. I do not want to leave someone out from getting this valuable information if they can't afford it. I now have a nonprofit so DONATIONS ARE TAX DEDUCTIBLE!!

If you would also like to be added to a networking list of over 90 other individuals and families facing the challenge of Apert syndrome, include all of the above information with the names and birth years of any brothers and sisters and I will add you and send you a copy when the next list goes out.

I am a one woman operation doing this in my "spare" (what's that?) time and raising a child with Apert syndrome, too, so please bare with me until your packet arrives. I have all the requests in a file and get to each a little at a time.

Hope to have you all aboard!!

Christine Clark Apert Support & Information Network P. O. Box 1184 Fair Oaks, CA 95628 (916) 961-1092 (phone + fax) apertnet@ix.netcom.com ========================================================================= Date: Wed, 20 May 1998 20:27:24 +0000 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "J. G. Lindamood" <chanan8@JUNO.COM> Subject: One more thing...

Hi, it's me again... I need to be in bed... I'm working a six day week this week.. here it goes.. then I will go for good..tonight..

In all seriousness, hearing from you helps me unload from the day with a 78 year old man asking me where sixth street is all afternoon!!!

Thanks to all of you for responding positively to my favor. Margot will be thrilled!

about the sensitivity thing...

I have learned the phrase "kill them with kindness" really works. when a child is staring at me, I realize they do not know better and do not deserve the rude comment I could give them. so, I politely make eye contact and just smile. Eventually they get bored and look away. But with the kids I am making personal contact with, like those at church who do not know me very well, I talk to them and answer their questions honestly. Like the 78 year old, they do not understand their social blunders and don't deserve to be treated rudely. Their parents, on the other hand are different.

Okay, I am out of here! Joanne ========================================================================= Date: Wed, 20 May 1998 15:31:59 -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: Advanced Language & Other Folks MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

> I am sure our children grow up knowing words other children have never heard. Amy used to anaesthetise her dolls instead of putting them to bed.

Michelle and Shannon put Michelle's nasal cannula for her oxygen on her dolls and listens to them with my stethescope. Maybe they will all be doctors when they grow up, ha!!

Christine ========================================================================= Date: Wed, 20 May 1998 15:16:05 -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: Questions on Tonsils/Adenoids MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

>The recommended course of action from CHOP's > craniofacial team's ENT is removal of tonsils/adenoids. He's 5. I > remember reading something here about the effects of this surgery on > speech. I think I remember someone saying it becomes more nasal.

I have mentioned this at least in the newsletter once but probably on the listserv, too.

Some children have had T & A's with some success and then the obstruction comes back again, some are successful, some apneas don't improve until after mid-face advancement but:

The question is, does Quentin have a submucous cleft palate or a bifid uvula (double puching bag in throat)?

I have been told by at least three different ENT's not to have Michelle's tonsils or adenoids removed because she has a submucous cleft palate and she would end up with nasal-pharangeal speech afterwards. Of course, the speech pathologists just say "We can work on that in speech therapy" but why give the added baggage to an already full plate of problems?

Have they discussed the use of a Bi-PAP or CPAP (continuous positive airway pressure) machine to use when he sleeps? Or the use of oxygen at night? Michelle couldn't tolerate the machines but has been using oxygen for almost 5 years at night for her sleep apnea. We also have an oxygen saturation monitor at home to monitor her on her bad nights when she is congested with a cold. We usually can get her through with an increase in the liters of oxygen per minute.

Just some info. for you to mull over.

Good luck.

Christine ========================================================================= Date: Wed, 20 May 1998 21:00:29 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: DnJJenner <DnJJenner@AOL.COM> Subject: Re: test results Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Judy, if you save as a .jpg or .gif the pictures are smaller to send, .bmp are the largest thats why it took so long. and color has alot to do with it... Dawn ========================================================================= Date: Wed, 20 May 1998 20:17:34 -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: Pictures/Thanks. MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

We received Nate's, Amy Collen's, Jonathan Siebert's, Courtney's, Zoe's and Michelle Clark's pictures. They are all adorable kids! Hope to receive more and more pictures... Felipe's picture is going to be ready this weekend. Hope to be sending it to you all late Monday or Tuesday. Thank you so much for those wonderful pictures.

The Ize's. ========================================================================= Date: Wed, 20 May 1998 21:45:26 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: NephiRose <NephiRose@AOL.COM> Subject: Re: Sensitive Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

In a message dated 98-05-20 20:06:10 EDT, you write:

<< These people were old enough to know better and if mom weren't with me I would have pulled the "too much glue as a child" comment on them. My point is I didn't notice the people until mom made a spectacle of herself trying to protect me. >>

Joanne,

You've got spunk. Made my day. :)

Belinda ========================================================================= Date: Wed, 20 May 1998 21:47:40 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: NephiRose <NephiRose@AOL.COM> Subject: Re: APERT SUPPORT & INFORMATION NETWORK Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Christine,

I'd like to be on the list I don't know if I already submitted this yet or not.

Belinda Vicars 993 North Aspen Way Layton, Ut 84040 (801) 546-6779

Child:

Sarah Vicars Birthdate: 8/8/96 ========================================================================= Date: Wed, 20 May 1998 22:34:53 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: Help Reply Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

<<<<<<You said "He drools and his nose runs all day and at night all the secretions just accumulate at the back of the throat." If you do give him milk, it is known to give similar problems in some kids.>>>>>>>

Zoey's Mom here, her doctor prescribed some Benydryl for the nightime secretion accumulation problem. Maybe that will work, ask your doctor.

Christina San ANtonio ========================================================================= Date: Wed, 20 May 1998 21:35:59 -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: Re: test again MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit

Got the picture. Looks great!!! Laurie

---------- > From: William Amerman <jamerman@UTI.COM> > To: APERT@LISTSERV.AOL.COM > Subject: test again > Date: Wednesday, May 20, 1998 1:05 PM > > > ========================================================================= Date: Wed, 20 May 1998 17:58:10 -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: Help! MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

Colleen,

Just a few thoughts.

> We saw a pulmonologist and he > wanted a sleep study done so we did a modified one at home.

I would expect a complete sleep study in a sleep center and not a modified version at home before deciding on a trach.

> showed severe coanal stenosis (as suspected).

Michelle had the same problem at birth and was maintained on oxygen 24 hours a day. As she grew the oxygen was discontinued. Later when the sleep study showed severe obstructive sleep apnea we tried the Bi-PAP and then CPAP before going back to the oxygen at night. She currently uses 2 liters but goes up to 3 liters when she has a cold. We sometimes switch from the nasal cannula to a face mask when she is really congested (the liters have to go up to at least 4 when using a mask to compensate for the CO2). Her sleep apnea is improving as she grows (according to the latest sleep study).

If he was doing OK on oxygen with the pneumonia then he was getting enough through his nose even with the choanal stenosis. Michelle was on 3/4 liter when she was an infant with choanal stenosis and was maintained without a trach.

> When he coughs, his SATs go back up in the 90s.

Has anyone suggested trying the Bi-PAP or CPAP or more oxygen before going into a trach?

I would be inclined to ask for a thorough sleep study (in a clinic) to check out all possibilities first. I had the technicians put the cannula on Michelle before she fell asleep so all they had to do to test her was turn the oxygen on instead of waking her up, putting it on and then trying to calm her down enough to go back to sleep.

By the way, if you cut off the nasal prongs on the cannulas then they don't tickle and bother their nose. We have done this for Michelle since birth. Just leave two holes for the O2 to come out of and flow up into the nose. I have had some know-it-all nurses try to tell me it doesn't work as well but I have 8 years experience and even cut them when she is in the hospital. Her sats are proof it still works.

The possibility exists that a child with sleep apnea may need a trach IF ALL ELSE FAILS or if a child is in an emergency airway situation but I have heard of too many getting trachs without other options being investigated. The parents are many times told that it will be removed in a year and then the time limit is extended and before you know it the child has the trach until the mid-face is advanced. Anesthesiologists also feel more comfortable with a trach in an Apert child because they have a positive airway during surgeries.

I don't want to keep you from getting what is best for Jacob but I hope you can get all other options considered first. If he does end up needing the trach, let me know and I will get you connected with other families, using trachs, for support.

Good luck!!

Christine ========================================================================= Date: Wed, 20 May 1998 23:41:08 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Thornq <Thornq@AOL.COM> Subject: Re: stamps Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Jenn,

I didn't know that the stamps went up in price, but I'm going to the post office tomorrow, I will find out for you.

Lynn ========================================================================= Date: Wed, 20 May 1998 23:46:32 -0700 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: lisa mcgahan <wmcgahan@IX.NETCOM.COM> Subject: post exterior release MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit

has anyone had a post exterior release operation? this is the reshaping of the back of the head. morgan's head is very long and flat in the back. the doctor's say that it helps make the head rounder and also will provide better results for after the bigger frontal surgery? many thanks -- lisa ========================================================================= Date: Thu, 21 May 1998 00:09:56 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: post exterior release Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Lisa,

I just got this e-mail after I e-mailed you the other, please make sure you e- mail me back or call me because that is exactly what Andrew's doctors did for him. You are the first person I know of that has had this problem. Talk to you soon.

Lynn ========================================================================= Date: Wed, 20 May 1998 23:13:12 -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: "Allison's : GO USA, Inc" <gousa@KC.NET> Subject: United Way Feature Child In-Reply-To: <199805210346.WAA06604@dfw-ix12.ix.netcom.com> Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

Hello Friends!

Every year the United Way in the Greater Metropolitan Kansas City, MO and KS, USA, makes a video that they show to businesses and corporations to help with their fund drive.

This year they picked Shawn Allison with Apert Syndrome, 4 years old in June, to be the feature child in their video. They will do the actual photo shoot on May 8th.

They came to visit with Shawn today at the developmental preschool he attends, and to talk with our family about the particulars of the shoot. The ad agency seemed to fall in Love with Shawn and it will be a very interesting time watching them interact with him. Shawn is very outgoing, and funny. I have to laugh just thinking about how cute he acts. Of course, but I'm his dad.

It seems quite an honor to us that Shawn got nominated and chosen to be in the video.

Your Friends!

Mike, Laura. Rachel, Emily, Shawn, One on the way. ========================================================================= Date: Thu, 21 May 1998 19:01:56 +1200 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Howard & Ann <howrdnan@IHUG.CO.NZ> Subject: Re: United Way Feature Child Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

Well done Allison family!

May it be their most successful drive yet.

Cheers, Ann NZ ========================================================================= Date: Thu, 21 May 1998 07:29:23 -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: Bob Horning <Bob.Horning@CORP.HONEYWELL.COM> Subject: Re: Help!

Colleen

We've never had to go through the trach, but Krista had both sides of her nose completely grown shut (choanal atresia). When I look back I'm surprised they didn't. But I agree that they should look at every other course of action before taking that one.

Over time we have found that Krista breathes better at night if her head is slightly elevated. Little kids are nose breathers by nature, so it takes time for them to pick up mouth breathing. In addition, their tongues have a tendency to pull up to the roof of their mouths when resting, rather than dropping down to the floor of the mouth. This obstructs the airway when they breathe through their mouths. The results are difficult breathing, low O2 and loud snoring. Raising the head helps pull the toungue down. We got a foam wedge and tucked it under Krista's mattress to get her head up about 6 inches (15 cm for you metricized folks) and that provides some relief. It's not a complete solution but it helps for her.

Bob Horning ========================================================================= Date: Thu, 21 May 1998 09:53:54 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: DnJJenner <DnJJenner@AOL.COM> Subject: Re: United Way Feature Child Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Way To Go Shawn!!! Congradulations!! Sounds like fun!! ========================================================================= Date: Thu, 21 May 1998 13:31:53 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Yonstein <Yonstein@AOL.COM> Subject: Re: post exterior release Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Lynn:

On the surgery that Andrew had, was the lambdoid suture fused also? Emily has one side of the lambdoid fused and the doctor is monitoring it. He said it may or may not need to be operated on depending on the growth. But the back of her head is really flat also. Just wondering.

Janine ========================================================================= Date: Thu, 21 May 1998 13:34:03 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: Yonstein <Yonstein@AOL.COM> Subject: Re: United Way Feature Child Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Congratulations to Shawn and the whole family. IT's going to be a great video campaign for them.

The Krebs family ========================================================================= Date: Thu, 21 May 1998 13:59:25 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jenngram <Jenngram@AOL.COM> Subject: Re: United Way Feature Child Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Congratulations to the Allison family..wish we were still in Kansas City to see it!!!!

Jenn(Tampa/St. Pete) ========================================================================= Date: Thu, 21 May 1998 15:10:46 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: DnJJenner <DnJJenner@AOL.COM> Subject: Help with sending Pictures Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Hello everyone...... well this sending pictures turned out to be harder then I thought, I now have no idea who I sent pictures too, except for the ones I wrote"sent" on the envlopes, I know I sent out alot and now have no idea to whom, and I feel really bad for leaving some people out.... this is who I got from: Amerman,Chan,McGahan,Zhang,Bailey,Jefferson,Miller,Zaengle,Graham,Kilner,Muggl i,Hill,Johnston,Magno,Lynch,Krebs,Graham(Denise),Luxton&Esler. So the people I MISSED if they could please just drop me a note and let me know I am more then happy to send a note and a picture off to you... again I am soooo sorry. OXOXOX Dawn ========================================================================= Date: Thu, 21 May 1998 14:35:41 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Judy Amerman <jamerman@UTI.COM> Subject: Re: Help with sending Pictures MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit

Dawn, I have not received from you yet Judy Amerman

---------- > From: DnJJenner <DnJJenner@AOL.COM> > To: APERT@LISTSERV.AOL.COM > Subject: Help with sending Pictures > Date: Thursday, May 21, 1998 2:10 PM > > Hello everyone...... well this sending pictures turned out to be harder then > I thought, I now have no idea who I sent pictures too, except for the ones I > wrote"sent" on the envlopes, I know I sent out alot and now have no idea to > whom, and I feel really bad for leaving some people out.... this is who I > got from: > Amerman,Chan,McGahan,Zhang,Bailey,Jefferson,Miller,Zaengle,Graham,Kilner,Mug gl > i,Hill,Johnston,Magno,Lynch,Krebs,Graham(Denise),Luxton&Esler. > So the people I MISSED if they could please just drop me a note and let me > know I am more then happy to send a note and a picture off to you... again I > am soooo sorry. > OXOXOX > Dawn ========================================================================= Date: Thu, 21 May 1998 14:39:38 -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: pictures MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit

Hi all, Ther is a few people that I do not think iI sent pictures to. Christine, Did you get a picture of Nick yet. Also, I do not know if I sent one to the Hartley Family. Please let me know. I am sending out out to the Park's and Carol in Australia today. If I missed anyone else, let me Know. Thanks Judy ========================================================================= Date: Thu, 21 May 1998 15:37:10 -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: Testing MIME-Version: 1.0 Content-Type: text/plain

Testing

========================================================= Mark Wittenburg 602.350.8237 City of Tempe www.tempe.gov Technical Services Supervisor Systems and Network Admin ========================================================================= Date: Thu, 21 May 1998 16:00:32 -0700 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "Wittenburg, Mark" <Mark_Wittenburg@TEMPE.GOV> Subject: Testing/Delete MIME-Version: 1.0 Content-Type: text/plain

Sorry....Testing E-mail

========================================================= Mark Wittenburg 602.350.8237 City of Tempe www.tempe.gov Technical Services Supervisor Systems and Network Admin ========================================================================= Date: Thu, 21 May 1998 16:13:21 -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: Testing/Delete MIME-Version: 1.0 Content-Type: text/plain

Sorry....testing

========================================================= Mark Wittenburg 602.350.8237 City of Tempe www.tempe.gov Technical Services Supervisor Systems and Network Admin ========================================================================= Date: Thu, 21 May 1998 22:15:25 +0000 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "J. G. Lindamood" <chanan8@JUNO.COM> Subject: Re: United Way Feature Child

Hello family!

Way to go Shawn! Wish I could see the video too!

Joanne in beautiful Ohio! what did we do to deserve this gorgeous weather??? ========================================================================= Date: Thu, 21 May 1998 21:41:57 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Laurie Bailey <jkb@ELPASO.NET> Subject: Eventful Day! MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit

Hey all:

Just thought I would tell you all what kind of day I just had. It started as any normal day when I have to go into work at 7 am.

Got the kids ready to go to Grandma's and headed into work.

Today, at work, I was to sit through meetings all day long about how to increase our bar sales at the restaurant I manage (Chili's Grill & Bar). Anyway, we got done with the first part of our meeting and were going to go to lunch and resume the meeting at a different location. On the way to the different location, I was involved in a car accident. The accident involved four cars. My car was second from the last. So, a car rear-ended me causing me to rear-end the car in front of me, causing that car to rear-end the car in front of her. My car got totally squished in between two cars. Luckily, and thankfully, I was wearing my seatbelt and the airbags deployed. Let me just tell you, I will not ever buy a car without airbags. I'm okay except I'm a little sore and probably will be more tomorrow.

Just had to tell someone about my day besides my family.

Talk to you soon! Laurie Bailey jkb@elpaso.net ========================================================================= Date: Thu, 21 May 1998 23:45:00 -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: Dantur MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

Dear Gabriel,

I don't know if you are aware and maybe you are and that is why you are writing to us.

But we are from south Florida Ft. Lauderdale area about 30 miles from Miami and our doctor is Anthony Wolfe, he will perform Nicole's first surgery next month. We are also very impressed with his work and his knowledge of Aperts kids. He has referred us to an Ophthalmologist (Cleve Howard M.D.) Orthodondist (Samuel Berkowitz D.D.S.) Plastic Ortho hand surgeon (Deirdre Marshall M.D.)(Dr. Wolfes wife). All doctors who are very much experienced with Aperts. Our Neurosurgeon is John Ragheb M.D. at the University of Miami/Miami Childrens who is also very knowledgable of Aperts (he actually recommended Dr. Wolfe to us) Dr. Ragheb is a very postive man and very comforting and works well with Dr. Wolfe. Dr. Marshall is Dr. Wolfe's wife and works parallel with him on the surgeries so she is very familier with Apert hands.

We feel very comfortable with this team of Doctors and we also feel that we are doing the best we can for our little girl. Her surgery will be done at Miami Childrens Hospital which is a great Hospital.

I wish you guys the best and I will keep you all posted. I think you will make a good choice with Dr. Wolfe if that is who you are deciding on. Good luck and please keep us posted.

P.S. If you plan on coming down to Miami please look us up. Our phone numer is (954) 384-8041 we would love to get together with you, maybe you can come by our house for a barbeque or something. (Hablamos espanol)

Talk to you later

Raquel Miller in sunny south Florida.... ========================================================================= Date: Thu, 21 May 1998 23:53:37 -0400 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jack and Raquel <jara1@BELLSOUTH.NET> Subject: Eventful day MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

Laurie,

So sorry to hear about your day, but I am glad you are o.k....keep that Tylenol bottle handy....

Have a good night..

Raquel Miller.... ========================================================================= Date: Thu, 21 May 1998 23:55:39 -0400 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jack and Raquel <jara1@BELLSOUTH.NET> Subject: Jordan MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

Jenn,

I'm so glad to hear that Jordan is fine from his surgery. How long was he in the hospital? You know once Nicole recoops from her cranial next month her hands are next....

Talk later...

Raquel.... ========================================================================= Date: Thu, 21 May 1998 23:58:06 -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: Dantur MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

Dear Gabriel,

I don't know if you are aware and maybe you are and that is why you are

writing to us.

But we are from south Florida Ft. Lauderdale area about 30 miles from

Miami and our doctor is Anthony Wolfe, he will perform Nicole's first

surgery next month. We are also very impressed with his work and his

knowledge of Aperts kids. He has referred us to an Ophthalmologist

(Cleve Howard M.D.) Orthodondist (Samuel Berkowitz D.D.S.) Plastic Ortho

hand surgeon (Deirdre Marshall M.D.)(Dr. Wolfes wife). All doctors who

are very much experienced with Aperts. Our Neurosurgeon is John Ragheb

M.D. at the University of Miami/Miami Childrens who is also very

knowledgable of Aperts (he actually recommended Dr. Wolfe to us) Dr.

Ragheb is a very postive man and very comforting and works well with Dr.

Wolfe. Dr. Marshall is Dr. Wolfe's wife and works parallel with him on

the surgeries so she is very familier with Apert hands.

We feel very comfortable with this team of Doctors and we also feel that

we are doing the best we can for our little girl. Her surgery will be

done at Miami Childrens Hospital which is a great Hospital.

I wish you guys the best and I will keep you all posted. I think you

will make a good choice with Dr. Wolfe if that is who you are deciding

on. Good luck and please keep us posted.

P.S. If you plan on coming down to Miami please look us up. Our phone

numer is (954) 384-8041 we would love to get together with you, maybe

you can come by our house for a barbeque or something. (Hablamos

espanol)

Talk to you later

Raquel Miller in sunny south Florida....