========================================================================= Date: Fri, 22 May 1998 00:03:13 -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: Jack and Raquel <jara1@BELLSOUTH.NET> Subject: United Way MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

That's so great.....Shawn we are really excited for you...Congratulations Allison's....

Raquel.... ========================================================================= Date: Thu, 21 May 1998 21:43:56 -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: Eventful Day! Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

Laurie, I am glad you weren't hurt. I believe in airbags too. They can save lives. Hope you feel better soon.

May I ask all of you to pray for several families in our area. Unfortunately we had an eventful day locally too. We had a fatal shooting at one of our local high schools today and several students are still in critical condition. A few people were killed. I am not sure of the number yet as reports are conflicting. I am very sad and angry at the same time. We come from a smaller communittee and it is so hard to believe that this type of thing happened here. What are our public schools becoming? It seems to be becoming an epidemic. I still am in disbelief. Actually the whole town seems to be in a fog. Please pray for all of the victims families and friends who are suffering. Sorry, but I needed to vent/share this one. :``-(

Hugs, Robyn ========================================================================= Date: Fri, 22 May 1998 01:08:14 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: JPayne5634 <JPayne5634@AOL.COM> Subject: Fwd: IRC Chat Nite 5/22/98 Mime-Version: 1.0 Content-type: multipart/mixed; boundary="part0_895813695_boundary"

This is a multi-part message in MIME format.

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From: JPayne5634 <JPayne5634@aol.com> Return-path: <JPayne5634@aol.com> To: crouzon@u.washington.edu Subject: IRC Chat Nite 5/22/98 Date: Fri, 22 May 1998 01:05:58 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 let's get acquainted with each other :) Keep in mind that some people will show up a little later then the time started Please join us :)

Date to Meet On ; May 22, 1998

IRC Server: Chat Net ( Any locations)

Port Setting: 6667

Channel: #apertcrouzon

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

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

For those with Windows 3.11 or Windows 95 please download mIRC at

http://www,mirc.co.uk

For MAC Users Please download IRCle at

http://www.amug,org/~ircle/

You can download the AOL IM ( AOL Instant Messenger) at:

http:/www.aol.com/aim

You don't have to be a member to join AOL IM and its free!! AOL IM is a one to one online chat. My AOL IM is Lauren1273

Hugs

Lauren

--part0_895813695_boundary-- ========================================================================= Date: Fri, 22 May 1998 08:24:32 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: Jenngram <Jenngram@AOL.COM> Subject: Re: Eventful Day! Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Glad your ok..those care wrecks are scarey business..I remember when Joe got into a pretty bad one..his car was ruined..when I saw it I couldn't believe he walked away..same w/ my dad when he got broadsided by a drunk driver doing 65 mph and he was doing 25...minding his own businness commuting into work at 6am...sipping his coffee and WHAM!!!! Thank goodness for seat belts and air bags!!!!!

Again, glad your ok!!!!

Jenn ========================================================================= Date: Fri, 22 May 1998 09:52:33 -0400 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jim and Kelly Younkin <JimandKelly@YOUNKIN.COM> Subject: Hi to all! MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit

Hi to everyone from the Younkins! It's been really really busy here so I'm now wading through MANY unread emails!! Congratulations and speedy recoveries to all those who've just had surgeries. Best wishes to those still upcoming. Laurie--glad that car accident wasn't worse than it was--cars can be replaced! The pics we've been receiving are adorable. I should be able to get Sara's out late next week. Welcome also to the Hartley family. Our youngest, Sara, has Aperts and we've been working with the staff at CHOP since she was born 2 years ago. WE feel you couldn't be working with a better place, but of course we're biased! We live in central PA near Williamsport. Feel free to call us if you'd like at 717-524-0865. This list has been a wonderful source of info and support! Take care everyone! Kelly ========================================================================= Date: Fri, 22 May 1998 15:42:28 -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: Miami MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

Dori,

Please, Please give us a call prior to you coming down or e-mail me with the date and once you arrive call us, we most definetly want to get together with you guys. We have yet to see another Apert child and I would love to take pictures of Nicole and Seth together. I think it would be a great addition to her scrap book.

Let me know with time so we can plan the barbeque, we have a swimming pool and its real hot down here so we can have a mini pool party, or at least the kids can. Nicole hasn't been in the pool yet she's 7 months old and already has fluid in her ears, but with the surgery 3 weeks away I don't want to do anything that will make her sick again just in case we'll keep her out until after surgery. But we have 3 other kids, Michelle 14, Steven 10 and Erica 3 they'll be more than happy to jump in.

Please call us our number again is (954) 384-8041.

Talk to you soon...I'll be keeping your number handy...

Raquel... ========================================================================= Date: Fri, 22 May 1998 14:34:46 -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: Ear tubes and swimming Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

Just a quick question.

We are going to take a mini vacation and stay at a place where they have a warm pool. Brenna loves the water and I would love to get her started on swimming real soon. What do you all do about keeping the water out of ears. She has ear tubes and ear plugs that were made for her, but they fall out easily. I have seen bands that are supposed to hold the ear plugs in but I have no idea where to get them. Does anyone have a name brand or # to call - or other suggestions??? I have also heard of silly putty in the ears (used like ear plugs) but I vaguely remember someone saying do not do that.

Any suggestions? Hugs, Robyn ========================================================================= Date: Fri, 22 May 1998 18:49:52 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: Eventful Day! Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Laurie, sorry to hear about the car accident, i hope the guy that hit you had some insurance. Before I got on the listserv, a lady hit me from behind and then took off, i had my 5 yr old in the car...how aweful for me! :) I got an instant head and bachache and they went away in a few days...hope you feel better. Take care, Christina, Zoey and Tia Mathis San ANtonio ========================================================================= Date: Fri, 22 May 1998 19:26:09 +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,

Robin, I thought about you when I heard about the shooting in Oregon. When is this going to end?

I had a long day too. Was the only one on my unit who showed up for work. We had a mock disaster drill planned for today and a lot of people saw it as extra work. They didn't think about the extra work they gave to those of us who showed up! Our director emphasized more than once we were on a business as usual schedule for the whole day! I am tired! sorry to hear about the saddness our country is experiencing.

I had the ear problems your kids are experiencing when I was younger. Actually, I still do, but have become immune to the pain and inconvience. My parents got me some custom made ear plugs to wear in the pool. I LOVE TO SWIM! Unfortunatley, I out grew them and learned how expensive they were when I treid to get them as an adult. Don't know if insurance will cover them. They were perfect because they were made for me. I really noticed the reduction in problems that summer!

Laurie, hope your body heals quickly.

Joanne, now it's cold! in Ohio ========================================================================= Date: Fri, 22 May 1998 20:56:10 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Thornq <Thornq@AOL.COM> Subject: Re: Help with sending Pictures Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Dawn,

I have not received a picture from you yet either. I have not sent out Andrew's pictures yet, but will be doing that next week.

Lynn Thornquist ========================================================================= Date: Fri, 22 May 1998 21:04:47 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: Thornq <Thornq@AOL.COM> Subject: Re: Eventful Day! Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Robyn,

I just realized that you lived in Oregon. I am so sorry for what has happened. It has been all over the news stations. How close are you to Springfield? We as parents always say, "it won't happen in my town, I live in a small town", and then something like this happens and we have to rethink everything. It is very scary living in today's society. I want to know how our children get their hands on guns and bullets. I ask myself the question everyday, "what is our world coming to".

Please be assured that I have already started praying and many times asked why. All we can do is pray that nothing like this happens to our children and teach them about right and wrong. These kids that are committing these crimes are getting younger and younger by the minute. I feel like we have failed our children of today.

Maybe we should hold our little ones a little closer tonight and give them extra kisses and lots of "I love yous". Feel free to vent any time.

Lynn ========================================================================= Date: Fri, 22 May 1998 21:10:12 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: Thornq <Thornq@AOL.COM> Subject: Re: Ear tubes and swimming Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Robyn,

We just got ear plugs from Andrew's ENT for bathing reasons (water ofcourse). But when I was talking to my pediatrician about it he told me that ear plugs tend to keep water in better than keeping it out. But I would check with your ENT. Andrew still has his tubes in his ears and we haven't used his ear plugs in awhile (the cats lost one of them) and we have not had any ear infections or problems. As long as everything is draining properly, I don't think there is much to worry about. Good luck.

Lynn ========================================================================= Date: Fri, 22 May 1998 21:24:19 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: Thornq <Thornq@AOL.COM> Subject: Searching!!!! Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Hello to everyone!

On Thursday I had an appointment with Andrew's neurosurgeon, Dr. Michael Scott. Besides the fact that he told me that Andrew is looking great and better than they had every anticipated, he mentioned a family he had visited with last week from New Jersey. He did not say anything more than that, so confidentiality is not broken. He only mentioned it because I brought up the fact that I am now on the Apert Listserv. He though it was a wonderful thing. Unfortunately, I forget to bring the pictures to show him. I was wondering if that would be okay with everyone, because next time I see Dr. Upton I would love to show him. I know that he would love to see everyones kids. Again, is that okay?

Well, back to what I started out saying (I will stop ramblin'). What I would like to know is if it was any of you that visited him. I know of a couple of people who have been in this area lately to see Dr. Upton so I was wondering if someone had stopped by to see Dr. Mulliken and Dr. Scott.

Feel free to e-mail me personally at Thornq@aol.com. I would love to be of help if you are trying to decide between surgeons. Thanks for listening.

Lynn Thornquist Boston ========================================================================= Date: Fri, 22 May 1998 21:53:34 -0400 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: ROBIN L HILL <CARMENRAE@PRODIGY.NET> Subject: Carmen Rae's GREAT ADVENTURES MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit

Hello everyone. Just wanted to let all of you know that we have been out of town and I have just caught up on EMAILS. Carmen Rae had her first REAL vacation to the beach!!!!! She LOVED IT! We spent alot of time outside and she really enjoys the outdoors! The hotel we stayed at had a lovely deck (in the shade) with a great view of the ocean so we got to enjoy the beach without the sand and sunburn!!!!!!! Carmen Rae also had her first swim in the hotel pool!!!! I think she will continue to talk dad into getting one for home. She really loves her baths so I figured she would love the pool. Anyway, just wanted to update you on Carmen's great adventures.

GREAT job, Shawn! This will be the best video ever I am sure!!!!!!!

Sorry to hear about the bad experiences this week (stares, car wreck, illnesses, etc.). Hope things will get better this next week.

Glad to hear about successful surgeries completed and will continue to keep those with upcoming surgeries in our prayers.

Oh yes, I am beginning to see that "STRONG WILLED" attitude that some of you have mentioned in my little darling. She has learned how to scream. I don't mean crying type screaming, but the "I AM SOOOOO MAD AND YOU BETTER DO SOMETHING ABOUT IT" screaming. I promise she is telling me off in baby language. Life gets interesting; you know it is actually quite humorous.

Well, I guess that is enough. I am so glad to be back with my EMAIL; although, we did have a nice get away.

The Hills (Mike, Robin, and Carmen Rae) Newnan, GA ========================================================================= Date: Fri, 22 May 1998 21:56:32 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: GSieb91515 <GSieb91515@AOL.COM> Subject: Re: United Way Feature Child Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Congratulations! What an honor. I've often wondered if Apert Syndrome was a part of the United Way Foundation and if there was actually a fund where monies were used specifically for Apert Research. Would love to hear more. Is there a number where we can order a copy of the video? I bet Shawn will keep everyone smiling. Best wishes and congratulations on the new arrival to come.

Brenda Siebert Houston GSieb91515@aol.com ========================================================================= Date: Fri, 22 May 1998 22:01:34 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: GSieb91515 <GSieb91515@AOL.COM> Subject: Re: Eventful Day! Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Laurie-

So sorry to hear about your accident. That must of been so scary. I am even afraid of the airbags. I've heard they really come out with incredible force. Glad to hear that you are okay.

Brenda ========================================================================= Date: Fri, 22 May 1998 22:08:07 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: GSieb91515 <GSieb91515@AOL.COM> Subject: Re: Eventful Day! Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Robyn-

We are deeply saddened by what happened at the school. It seems as though this is happening more and more. Something has to be done to keep these guns away from kids and better yet make sure all children are raised with morals and value human life. It sickens me to think of a child killing (it's bad enough that there are adults who kill). We will pray for these families and your community.

Brenda ========================================================================= Date: Fri, 22 May 1998 22:19:37 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: GSieb91515 <GSieb91515@AOL.COM> Subject: Recent Surgeries Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Resa-

Hope Mitchell has faired well from his cranial surgery. I lost a dear friend from my daughter's school this week and have been walking around in a fog. It just dawned on me that Mitchell had his surgery yestarday. Please let us know how it went when you can.

Did Billy and Emily have their surgeries today? If so, hope everything went well also.

Best wishes to all.

Brenda ========================================================================= Date: Sat, 23 May 1998 08:31:47 -0400 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jack and Raquel <jara1@BELLSOUTH.NET> Subject: Head band MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

Dear Robyn,

My niece has tubes in her ears and she had plugs customized to fit her ears, but she also has the head band you mentioned, which my sister feels it does help. My sister says she got her head band from her ENT doctor. The tag on the head band reads USA Physicians choice head band. She says its made out of the scuba diving material.

Have you asked your ENT doctor to see if they have them? If not I would try them first. Anyway If I find out any more information I will let you know.

Raquel..... ========================================================================= Date: Sat, 23 May 1998 08:39:08 -0400 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jack and Raquel <jara1@BELLSOUTH.NET> Subject: Surgery/Update MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

Jenn,

I can't believe that recuperating from the cranial surgery is better than the recuperation of the hands....Oh boy, I can't wait...especially not knowing how it is to recuperate from the cranial because I haven't been there yet. But I guess its good to know so we can be prepared.

Oh, I think I have forgotton to mentioned to everyone that our little Nicole 7 months now has stopped acting like a new born at night. Well she no longer sleeps in her car seat (bascially because she doesn't fit there anymore and doesn't want to be there). But we had to let her cry yes, you heard right, we let her cry. It was no problem for Jack but me I had to go to the family room cover my ears with the pillow and hum a few tunes. The first few nights were the worst, but she is getting a lot better, and I really do feel better, because she is now sleeping in her crib how she should have been from day one.

Well just wanted to keep everyone updated...

Have a great loooooong weekend...

Raquel.....in beautiful sunny Florida.... ========================================================================= Date: Sat, 23 May 1998 08:43:58 -0400 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jack and Raquel <jara1@BELLSOUTH.NET> Subject: Nicole's picture MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

Hi, everyone....

Please, those of you that have NOT received Nicole Millers picture please send me a quick e-mail, Nicki has a very disorganized mother and misplaced the list of the pictures already sent. I know I am missing around 12-13 people and I really want everyone to have Nicoles picture.

You can send your response directly to us at jara1@bellsouth.net so that way the listserve is not bogged down with the e-mails....

Thanks....once we get your response I will mail you her pics....

Raquel Miller..... ========================================================================= Date: Sat, 23 May 1998 08:56:46 -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: Last one... MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

O.K. I promise this is the last e-mail for today....This is a general one, please feel free to show Nicoles picture to everyone and anyone, I want everyone to know that Apert is here to stay and everyone to be knowledgable of it, that goes to you Lynn and you Pat (although I'm not sure Pat, do you have Nicoles picture?)

Take care everyone...

Raquel Miller... ========================================================================= Date: Sat, 23 May 1998 11:33:16 -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 Picture MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit

Feel free to show Carmen Rae's picture to EVERYONE!!!!! We do! ========================================================================= Date: Sat, 23 May 1998 12:41:18 -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: Ear tubes and swimming MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

Robyn,

This is where we got the band for Michelle. It is from The Right Start catalog (there are stores in some states).

"EarBand-It"

"Designed by a physician for children with ear tubes or frequent ear infections, popular EarBand-It is now sized just right for little ones. Neoprene band with adjustable Velcro closure holds soft, putty-like silicone ear plugs (included) safely in place. Keeps ears dry! Great for pool or bath. Ages 1-3 years. Please specify: Red, Royal Blue or Fuschia. 19 1/2" H x 3 1/2" W."

Ear Band-It #04430100

$16.95 + shipping, handling and tax (in some states)

Right Start (800) 548-8531 (800-LITTLE-1)

5334 Sterling Center Drive Westlake Village, CA 91361

HAPPY SWIMMING!!!!!!!!!!

Christine ========================================================================= Date: Sat, 23 May 1998 12:54:04 -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 Reply MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

> 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.

If left untreated a child can have developmental delays and the strain from struggling to breath can cause a heart condition called "cor pulmonale". That is why it is very important to get your child evaluated in a SLEEP CENTER and not just with a saturation monitor.

If your child is diagnosed with Sleep Apnea and is currently under treatment - don't forget to get follow up sleep studies (again in a sleep center) every 2-3 years.

Christine ========================================================================= Date: Sat, 23 May 1998 17:16:06 -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: Question for someone! MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

> I would like to know where MRS.SHERRY BELSLEY IS AT? She's got this little > bundle of joy, gorgeous little stinker named Kimberly.

I know where she is because she is on my mailing list. She, unfortunately, has not signed up for the networking list so I can not release her address.

If you want to e-mail me a message for her I will gladly print it out and mail it to her for you. Then she can get hold of you.

Christine Clark Apert Support & Information Network P. O. Box 1184 Fair Oaks, CA 95628 (916) 961-1092 (phone + fax) apertnet@ix.netcom.com ========================================================================= Date: Sat, 23 May 1998 21:36:21 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: Yonstein <Yonstein@AOL.COM> Subject: Re: Surgery Update Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Hi Everyone:

I just wanted to let you all know that Emily is home (Saturday) from her palate surgery yesterday. Boy is she a tough kid. She did great during the surgery. The time after in recovery and in her room was pretty tough for her (and me) but we made it through the night. She is feeding well with her bottle and even took some baby food when we got home today.

I am exhausted to say the least, so I will catch up on all the mail tomorrow. Hope everyone else is doing ok from surgery. I know there were a few of our kids having surgery this week.

Good night,

Janine ========================================================================= Date: Sat, 23 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: Thornq <Thornq@AOL.COM> Subject: Re: Surgery Update Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Glad to hear that Emily did great during surgery. I was praying for her and her recovery. The next few days will probably be sleepless, so try and snooze whenever she does.

Glad your home!!!!

Lynn ========================================================================= Date: Sat, 23 May 1998 23:13:43 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: Thornq <Thornq@AOL.COM> Subject: BJ update! Mime-Version: 1.0 Content-type: multipart/mixed; boundary="part0_895979623_boundary"

This is a multi-part message in MIME format.

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Hello friends!

I received a personal e-mail from Marjorie today and wanted to share some of it with you. I know that you are anticipating news, so here it is. She wanted me to let you all know, since she doesn't have much time for answering anymore. I also talked to her instant message, and she seems to be in pretty good spirits. All I ask of all of you is to keep them in your prayers at night. They are an extremely special family.

Lynn

We did get a milestone. BJ is now able to suck a little from a straw or dropper. The doctors say that that is an important step on the way back to solid foods. He is also tolerating more stimulus and beginning to try and use his communication board (The ones with pictures that stand for words) He is doing well in all his therapies and I think we are starting to turn a corner. The doctors are pleased that he has been home a month without any serious complications. I want to apologize for not keeping in touch. I have been starting to keep up with the list serve again and will be sending out pictures soon. I have to decide which pictures to send the ones of BJ before all this or the ones we did last week. Oh well that is a small problem.

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From: MHTeach102 <MHTeach102@aol.com> Return-path: <MHTeach102@aol.com> To: Thornq@aol.com Subject: Re: Hello friend!!! Date: Sat, 23 May 1998 22:25:00 EDT Organization: AOL (http://www.aol.com) Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Howdy Lynn,

It was to receive your message today. We are doing as good as could be expected down here. Actually we did get a milestone. BJ is now able to suck a little from a straw or dropper. The doctors say that that is an important step on the way back to solid foods. He is also tolerating more stimulus and beginning to try and use his communication board (The ones with pictures that stand for words) He is doing well in all his therapies and I think we are starting to yurn a corner. The doctors are pleased that he has been home a month without any serious complications. I want to apologize for not keeping in touch. I have been starting to keep up with the list serve again and will be sending out pictures soon. I have to decide which pictures to send the ones of BJ before all this or the ones we did last week. Oh well that is a small problem.

Tell everyone that we are fine and hopefully soon I will be back to writing to the listserv more. I know this is stupid but I just don't know where I fit into the group anymore. It is hard for me to watch the discussions of what all is happening and then to compare it to what BJ is doing. I will work that problem out, I just have to figure out what our role will be.

Love Marjorie

--part0_895979623_boundary-- ========================================================================= Date: Sat, 23 May 1998 23:39:24 -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: Ear tubes and swimming Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

>This is where we got the band for Michelle. It is from The Right Start >catalog (there are stores in some states).

Christine, thank you. I will order one right away. We have extended our "mini vacation" to 4 days so we should get lots of swimming time in! I might sign up for the parent toddler swim classes this summer too! It would be a blast!

Thanks Lynn and Raquel for your suggestions too. Congrats on getting Nicole to her crib :-) Lynn, you may share our pictures (anyone else too).

Hugs, Robyn

For those of you who have said a prayer for our communnittee, thank you very much. ========================================================================= Date: Sat, 23 May 1998 23:44:30 -0700 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Eric & Penny Halverson <hwy2heaven@EARTHLINK.NET> Organization: Crouzon Support Network Subject: Re: Sleep Apnea in Children MIME-Version: 1.0 Content-Type: text/plain; charset=koi8-r Content-Transfer-Encoding: 7bit

Hi everyone!!

Long time no hear! I've been away and still recovering from the previous surgery.

Anyway, regarding to sleep apnea that some of you folks had discussed about concerning your child. I agreed with what Christine Clark said about having your child to be check for sleep studies. This is really important especially for all children and adults with craniofacial anomalies.

I had sleep studies tests over at Providence Sleep Study Ctr in Seattle as requested by my craniofacial surgeon, Dr. Gruss to find out if I have sleep apnea. Sure enough, I have very severe case of sleep apnea and hypoapnea too.

I will be having a major craniofacial surgery within about between either July and September. Will keep you posted.

If you would like to find out more about Sleep Apnea in Children, please go to my website:

Click here ---> http://www.crouzon.org/apnea.html

You are more than welcome to read it and other articles too. Julie is my webmaster is working on another article for me and it called, 'Maxillofacial Surgery & Sleep Apnea.' It's not yet completed but will keep you posted on it soon. Thank you.

Hugs, Penny :-)

mailto:penny@crouzon.org http://www.crouzon.org/ ========================================================================= Date: Sat, 23 May 1998 23:49:52 -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: Surgery Update Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

Janine and Emily,

Congrats on getting through the rough waters! Sounds like you are both recovering well. I hope you can both get some good rest this weekend!

Hugs, RObyn J. ========================================================================= Date: Sun, 24 May 1998 20:34:44 +1200 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Howard & Ann <howrdnan@IHUG.CO.NZ> Subject: Tantrums (was Carmen Rae's GREAT ADVENTURES) Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

>Oh yes, I am beginning to see that "STRONG WILLED" attitude that some of >you have mentioned in my little darling. She has learned how to scream. I >don't mean crying type screaming, but the "I AM SOOOOO MAD AND YOU BETTER >DO SOMETHING ABOUT IT" screaming. I promise she is telling me off in baby >language. Life gets interesting; you know it is actually quite humorous.

Isn't it wonderful when you see this in your children! The trick is to keep alive the self-esteem that allows them to express themselves while teaching them the behaviour is unacceptable. We fixed Amy's tantrums very quickly at an early stage - first tantrum she threw I picked her up and put her between the dining room and lounge where I could keep an eye on her (she was at sitting stage but not strongly mobile), and where we had a padded mirror that she just loved lying and sitting in front of (padded so she wouldn't clobber herself on the edges). She saw herself in the mirror and stopped for a moment, then continued with the screaming for a while, but very soon decided it was not a sight worth seeing and stopped it - and we didn't have another for quite some time. She still throws the very occasional one now (like every six-eight months) but usually because she is overtired, overstimulated, and playing with her Dad who lets her get away with more stroppy behaviour than Mum does! She just winds herself up and doesn't know how to stop. But the flounces when she does throw them are lovely to watch, quite theatrical.

Isn't growing up wonderful. They just bounce out of one stage and into another!

Cheers, Ann NZ ========================================================================= Date: Sun, 24 May 1998 20:34:47 +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: Ear tubes and swimming Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

When Amy had her grommets put in we were told to keep her out of hot springs but warm pools and beaches were okay. First time she went in she got some water in one ear and got an ear infection!

We use wax, which makes a good seal though does take some time to put in, and looks grubby after a couple of uses. I have a friend who uses Bluetack (the stuff one uses to fit posters on walls without ripping off the paint) which would be more malleable.

Swimming is so important for Amy because it is one exercise she enjoys doing and it makes her use her arms - Ive told her if she doesn't exercise them she won't be able to put her arms up far enough to hug me by the time she's an adult, so I think she has started to get the message.

Ideally I want something that Amy can insert herself. So I'm interested to hear the experiences of others.

Regards, Ann in Auckland, New Zealand, where we are still waiting for winter to arrive! ========================================================================= Date: Sun, 24 May 1998 09:56:18 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: Jenngram <Jenngram@AOL.COM> Subject: Re: Surgery Update Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Janine,

Glad Emily is home and doing well...Get some rest

Jenn ========================================================================= Date: Sun, 24 May 1998 10:21:25 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: Tantrums (was Carmen Rae's GREAT ADVENTURES) Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Oh yes, jordan particulary loves to show his stubborness at 3am, when he deides the whole world should be up w/ him. I am waiting for complaints from teh neighbors. Unfortunatley, no matter if I go in or not, our dog, Alex, likes to go check it our..peeks his nose under the bumpers of Jordans crib and encourages this little game. I can hear Jordan in his roon squaealing w/ laughter..then in anger when the Alex leaves. Perhaps they have worked out a deal to get me up. If is wasn't such a disgusting hr. it would actually be funny. Oh well......

I also use a mirror to show him what an ugly face he makes, during daytime fits.. and it truely works.

Isn't growing up fun!!!!!

Jenn (Tampa/St. Pete) ========================================================================= Date: Sun, 24 May 1998 15:55:28 +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!

It was good to hear Emily made it through her surgery well. Hope recovery goes smoothly and quickly.

It was also good to hear from the Harmons. I had been thinking of them lately. I was hoping the "no news is good news" rule was being applied! Relieved I was right!

I have searched my memories and some how could not remember (conveniently) throwing any temper tantrums or screaming all hours of the night. Sorry, can't help you with that one! :-)

Joanne, in Ohio It's cold, cloudy and miserable here. ========================================================================= Date: Sun, 24 May 1998 18:11:06 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: Surgery Update Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

So glad you are home and on to a safe recovery. Rest often.

Brenda ========================================================================= Date: Sun, 24 May 1998 17:33:23 -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: Ear tubes and swimming Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

Thanks Ann for your suggestion too. :-) I am really excited to get Brenna into the water. I have a feeling she will love it - I do!!! We do not have a tub, but she loves showers and doesn't mind the water on her face. I will let you know what works for us. I was told not to get her ears wet at all - but her ear plugs have fallen out in the shower before and she has been fine. Going underwater though, we will have to be more cautious. Thanks for the tips, I will let you know what works for us. The band Christine suggested sounds like what we were looking for.

Hugs, Robyn - still waiting for winter to leave ;-)

>Ideally I want something that Amy can insert herself. So I'm interested to hear the experiences of others. > >Regards, >Ann >in Auckland, New Zealand, where we are still waiting for winter to arrive! > ========================================================================= Date: Sun, 24 May 1998 17:33:27 -0700 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Robyn Johnston <robyn@ORDATA.COM> Subject: Re: BJ update! Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

Lynn, thank you so much for sharing. I am so glad that BJ is doing well. I always pray that he is improving. He is such a fighter!!! My hat is off the the Harmons. Good job! Please keep us posted when you find the chance.

Hugs, Robyn J. ========================================================================= Date: Sun, 24 May 1998 18:59:36 -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: Ear tubes and swimming Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

Hi Ann, EvaJessie uses silicone ear plugs. They are malleable. I form them into a little cone shape to get down in her ear a bit and then flatten the outer part into a pancake which she then presses into the folds of her ear. They will stick to the skin well enough to keep them tight with the ear band that people are talking about. EvaJessie isn't swimming yet, just hanging about in the water, but once she gets into it, I think she'll need to wear the head band too.

She doesn't mind the plugs, either and is able to manage them almost by herself. They come six to a pack -- want me to send you some? I've got your address.

Pat in Calgary

>When Amy had her grommets put in we were told to keep her out of hot springs but warm pools and beaches were okay. First time she went in she got some water in one ear and got an ear infection! > >We use wax, which makes a good seal though does take some time to put in, and looks grubby after a couple of uses. I have a friend who uses Bluetack (the stuff one uses to fit posters on walls without ripping off the paint) which would be more malleable. > >Swimming is so important for Amy because it is one exercise she enjoys doing and it makes her use her arms - Ive told her if she doesn't exercise them she won't be able to put her arms up far enough to hug me by the time she's an adult, so I think she has started to get the message. > >Ideally I want something that Amy can insert herself. So I'm interested to hear the experiences of others. > >Regards, >Ann >in Auckland, New Zealand, where we are still waiting for winter to arrive! > > email to: bluenose@telusplanet.net IM: onlypeach shake and shake the ketchup bottle. none will come and then a lot'll ... unknown ========================================================================= Date: Sun, 24 May 1998 17:27:20 -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: BAD NEWS MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

MESSAGE FOR ALL,

This message is for everyone, especially those who are on my mailing list.

Last Thursday I found out that I have invasive breast cancer and I will need to have a mastectomy and then probably 6 months of chemotherapy. I am keeping a positive outlook and hoping that it has not gone to the lymph nodes yet (will find out at the time of the mastectomy - probably first week in June). I am opting for reconstruction which will require a reduction on my other side so I am focusing on "young and perky again" as something to look forward to, ha! After 40 we can use all the help we can get, HA!!!

I have finally cleared all the e-mail from my box this weekend, next I will work on the 30 or so new family packets to mail and do my best to get the networking list out to those of you that are waiting so you can all be able to contact each other.

After that, I will need to cut back on my Apert work and concentrate on getting myself back together. While recuperating I will do my best to keep sending out packets to new families.

Are there any families that would be willing to talk to new families on the phone when they call? Then you can get their information and give it to me so I can mail info. to them? If I have a few representatives around the country to use for contacts it would help me out.

I will try to keep up on what is going on in the listserv but I can't promise anything.

A newsletter will have to wait until after I am back to feeling better but I PROMISE not to forget about anyone. I am COMPLETELY devoted to this organization and helping as much as I can and will be back strong again when the time comes.

In the meantime, I have a nonprofit now so if anyone is looking for a tax deduction I will gladly accept any donations, ha!!!

You all take care and you will always be in my thoughts!!

Until next time I wish you 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: Sun, 24 May 1998 21:37:42 -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: B.J. MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

Marjorie,

We are really glad to hear that B.J. is getting better..We will continue to keep you and B.J. in our prayers.

Raquel... ========================================================================= Date: Sun, 24 May 1998 16:44:18 -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: Many things..... MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

Lynn,

It has taken me most of the weekend so far to get my e-mail box empty so I am a bit late in responding to your questions but I have a little input.

> They said that Andrew has large ventricles, anyone else heard that?

Yes, many do have large ventricles and it doesn't necesarilly mean they have anything like hydrocephalus which is something to keep an eye on with children with Apert.

In a report that I have, "Hydrocephalus in Apert Syndrome", they state "The fact that these common methods of estimating ventricular pressure and/or size are inadequate in the measurement of the acrocephalic head should be emphasized. The measurement of head circumference, using the occipitobregmatic diameter, is likely to be a poor criterion of intracranial volume in a deformed skull. In acrocephaly, as in some cases of uncomplicated craniosynostosis, the anteroposterior diameter may be shortened, whereas the tragus-to-tragus distance or height of the skull is usually markedly increased."

Michelle has hydrocephalus and was having annual MRI's until just last year. She is now old enough to complain of headaches or something so we go for MRI's every other year now. As long as Andrew is not exhibiting any other symptoms I wouldn't worry but I would ask that he be followed. You could ask for information on hydrocephalus so you will know the signs to watch out for. If he has scans every year, try to get MRI's instead of CT scans to cut down on the exposure to radiation which on the head can increase the risk for cataracts, etc.

> Next question....I want to know at what ages everyone's kids started talking. > I understand that Apert children talk late

Of all the families I have talked to around the world, it seems to be an average of age 3 before they really start talking. That means some sooner, some later. Michelle is still only 50% intellegible and she is almost 8 years old. She is a bit later than most. She makes progress each year, though. Each one is different but there are a lot of factors involved, i.e., multiple surgeries, oral-motor structure. Speech therapy and oral-motor stimulation are a big benefit. Articulation will need a great deal of work.

> Did I do the right thing or > should I have said something? I don't think their parents were around.

You have to go by your instincts which are best. Quite frankly, there are some days you feel like educating, some days you would really like to set someone in their place and other times you really don't want to be bothered. You will do what is best and is natural to you as his parent and I don't think anyone can tell you what is right or wrong.

You're doing great!!

All my best,

Christine ========================================================================= Date: Sun, 24 May 1998 22:02:52 -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: American Health Network MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

Just wondering did anyone watch the American Health Network tonight? My brother called me so that I would turn my T.V. to that channel because they had a special and the topic was Apert Syndrome. Of course we searched and searched but our cable company doesn't carry that channel. As my brother was on the phone with me he was looking for a tape so that he could tape the program, he started taping it but of course it had already started so he didn't get the whole program. I believe it was a Dr. Cohen that was speaking and they had a little one year old girl with Aperts and her dad in the program, I don't know anything else because I had to hang up the phone because my little one, Nicole was screaming because she wanted Mommi to put her to bed. I can't wait to see the tape, I'll let you guys know more about it when I see it. But, perhaps someone saw it in its entirety and can tell us about it. I'm just so excited because I don't think there are many shows out ther about Aperts.

We'll talk soon...

Raquel Miller.... ========================================================================= Date: Sun, 24 May 1998 22:08:41 -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: Christine MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

Wow, what a strong lady you are....Please know that we will be praying for you in hopes that everything turns out o.k. Please look up to God especially in these times. He will give you the strength you need to continue and fight. Pray, Pray, Pray and you will receive the peace you need for the following weeks to come. Stay strong, you sound like you have everything together. We will be praying for you....

Raquel Miller.... ========================================================================= Date: Sun, 24 May 1998 22:12:48 +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: Ear tubes and swimming In-Reply-To: <3567265E.32AB@ix.netcom.com> MIME-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7BIT

> This is where we got the band for Michelle. It is from The Right Start > catalog (there are stores in some states). > > "EarBand-It"

The ear band-it sounds like a great idea if the kids will leave them on. It would have to be more comfortable than the bathing cap. The bathing cap is probably harder to pull off (and put on), though, so it may be better for stubborn kids. They're available in nearly all sporting goods stores (at least around here -- lots of swim teams in this area). They come in different colors and sizes too.

Judy ========================================================================= Date: Sun, 24 May 1998 22:12:48 +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: Ear tubes and swimming In-Reply-To: <3.0.32.19980522143444.00c58a74@ordata.com> MIME-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7BIT

> We are going to take a mini vacation and stay at a place where they have a > warm pool. Brenna loves the water and I would love to get her started on > swimming real soon. What do you all do about keeping the water out of > ears. She has ear tubes and ear plugs that were made for her, but they > fall out easily. I have seen bands that are supposed to hold the ear plugs > in but I have no idea where to get them. Does anyone have a name brand or > # to call - or other suggestions??? I have also heard of silly putty in > the ears (used like ear plugs) but I vaguely remember someone saying do not > do that.

Don't use silly putty!!!!! We were told to do that when my boys had tubes in their ears, and ended up having the ENT scoop it out of the ear -- it breaks. You can buy silicone ear plugs -- you knead them to soften them, roll them into an egg shape and put them into the ear (smaller end first). Then you flatten the outer end and put a speedo (latex, if you're not allergic) bathing cap over the whole thing. It looks funny, but the ears stay dry. I think you can probably buy nylon bathing caps. They don't have to keep the head dry, just hold the ear plugs in place.

Also, check with the ENT, but we were told that for bathing and for shallow water, no ear plugs were necessary. The doc said my sons just needed them if they were going to dive under water. Since they spent so much time under water, we used the ear plugs any time they were in more than 6" of water.

Judy ========================================================================= Date: Mon, 25 May 1998 13:47:15 +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: Ear tubes and swimming Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

>I was told not to get her ears wet >at all - but her ear plugs have fallen out in the shower before and she has >been fine.

Robyn I got the impression from Amy's ENT that it was the shampoo/soap rather than the water that was the problem, which could explain that one. However with pools there are all the chemicals, with hot pools of course the bacteria love the heat, and with natural hot springs the bacteria can be lethal.

Nothing was meant to be simple!

Ann NZ

In Auckland, where the rain finally arrived on Friday night (and the wind and the hail, etc, etc!), but it is still unseasonally warm. ========================================================================= Date: Mon, 25 May 1998 13:47:16 +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: Ear tubes and swimming Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

>She doesn't mind the plugs, either and is able to manage them almost by >herself. They come six to a pack -- want me to send you some? I've got >your address.

Thanks for the kind offer Pat. We are going to the pool this afternoon and will see what they have - she also needs more togs as those chemicals just eat through them. If I can't find anything more suitable I'll let you know.

Ann NZ ========================================================================= Date: Mon, 25 May 1998 00:07:42 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: LUVS2WRTE <LUVS2WRTE@AOL.COM> Subject: Re: American Health Network Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Was it Steven Cohen, M.D.of the Scottish Rite Children'S Med. Center? I searched the AHN website and noticed his name. I couldn't find anything about the program you mentioned, but I noticed tomarrow at 9 AM and 11 PM he'll be on. If that's the same guy, it indicated he was a special guest. It didn't say anything more. Hopefully it's the same show.

-Andrea ========================================================================= Date: Mon, 25 May 1998 01:52:10 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: JSanc10676 <JSanc10676@AOL.COM> Subject: Re: BAD NEWS Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Christine, I can't imagine what your going through now, you have a wonderful positive attitude and that will get you a long way in the next several months. Take care of yourself always, the rest of the stuff will be there until you can get to it. If I can do anything for you regarding the new apert family calls in the Northwest, or anywhere for that matter let me know. My phone number is 206-367-6263. Best wishes to you and your family. Julie Sanchez ========================================================================= Date: Mon, 25 May 1998 08:50:13 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: Jenngram <Jenngram@AOL.COM> Subject: Re: BAD NEWS Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Christine,

i am so sorry to hear your latest news.....You will be in my thoughts and prayers..

If you need me to get in contact with anyone please feel free to call on me..as I am homebound w/ Jordan I have plenty of opportunity. Just let me know what you need me to do.

1-813-381-9138 jenngram@aol.com

Also, since you have non-profit status...should donations continue to be made out to you, or to the Network/ Or does it not really matter?

Beat wishes for a speedy recovery

Jenn(Tampa/St. Pete) ========================================================================= Date: Mon, 25 May 1998 10:07:13 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: CoH 1862 <CoH1862@AOL.COM> Subject: Re: BAD NEWS Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Good luck on your surgery. Our prayers will be with you. Take care of yourself first.You will like the reconstruction. I am a surgical nurse and you will have a better outlook than someone who doesn't have reconstruction. Again our prayers are with you.

Diane Youngblood ========================================================================= Date: Mon, 25 May 1998 11:19:24 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Yonstein <Yonstein@AOL.COM> Subject: Re: BAD NEWS Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Dear Christine:

You are a very strong woman with a great outlook. Hang in there. I will be praying for your quick recovery. If I can do anything for you also let me know. I am willing to speak to new families or anything else you need.

Take care,

Janine

(516) 795-9668 ========================================================================= Date: Mon, 25 May 1998 11:20:43 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: Yonstein <Yonstein@AOL.COM> Subject: Re: BJ update! Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Marjorie:

Glad to hear that BJ is doing well and making some improvements. Please know that we look forward to hearing from you!! We are keeping you in our thoughts and prayers.

Janine ========================================================================= Date: Mon, 25 May 1998 11:56:03 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: TheMorenos <TheMorenos@AOL.COM> Subject: Re: BAD NEWS Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Christine-

I am so sorry about your bad news. Please know that several of my aunts have had breast cancer (negative nodes) and are doing wonderfully. You are in my thoughts and prayers. If I may be a contact, by phone, help on email or anything, please let me know. I would be more than happy to help.

Sincerely, Robin Moreno Wichita Falls, TX 940/692-5510 casamama@aol.com TheMorenos@aol.com ========================================================================= Date: Mon, 25 May 1998 12:06:15 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: LUVS2WRTE <LUVS2WRTE@AOL.COM> Subject: Re: BAD NEWS Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Dear Christine,

I'm so sorry to hear your bad news. I strongly believe you will survive this since you are a strong person. My senior yr. math teacher's wife had breast cancer, and she beat it. I feel you will too. Just don't lose hope! You'll be in my thoughts and prayers.

If I can do anything or help in anyway, please let me know.

Andrea ========================================================================= Date: Mon, 25 May 1998 12:47:13 -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: baconsmith <bluenose@TELUSPLANET.NET> Subject: Re: BAD NEWS Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

Christine, what dreadful news. I will be thinking of you as you get through this. I want to tell you about a book that I think is really marvellous and I read it last year just before EvaJessie's orbital osteotomy. It gave me great peace and a good sense of being where I needed to be -- it is called Love Medicine and Miracles by Dr. Bernie Siegel -- it's actually about exceptional cancer patients, but I found it applies equally to my situation as a parent of a craniofacial patient. Anyway, I hope you won't think me intruding, but it's a great read and you might enjoy it. Just a thought.

Although EvaJessie doesn't have Apert, I would be happy to be a contact for families in Southern Alberta (Calgary is the largest city here -- about 800,000). I don't know any Apert kids here, but would be happy to help out if I can.

By the way, I sent you some money with EvaJessie's picture -- should arrive this week or next --- and my home phone is 403-289-3751.

Pat Bacon 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, 25 May 1998 15:17:31 -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: "MARK KURAS. Our youngest son Michael, known to us as" <kurasmp@BELLATLANTIC.NET> Subject: sorry to hear!!! MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

Christine, Paula and I are terrrible sorry to hear the news. Your information and love have helped us and hundreds of others through some very rough times. We will keep you in our thoughts and prayers in the upcoming months. Through our suffering with Michael I have learned one thing: God never gives you more then you can handle, but sometimes he keeps you right on the edge so you can find out what you're made of!!! We would be gald to help in any way with whatever you need. you can reach us at Kurasmp@bellatlantic.net. May God Bless you in this time of need. Mark and Paula Kuras ========================================================================= Date: Mon, 25 May 1998 10:43:30 -0700 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "Christine L. Clark" <apertnet@IX.NETCOM.COM> Organization: APERT SUPPORT & INFORMATION NETWORK Subject: Re: BAD NEWS MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

> Also, since you have non-profit status...should donations continue to be made > out to you, or to the Network/ Or does it not really matter?

PLEASE make it out to the Apert Support & Information Network

Thanks for the offers of help. I will keep your names and numbers on file for reference if needed.

Christine ========================================================================= Date: Mon, 25 May 1998 15:48:44 -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: BAD NEWS MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

Dear Christine,

We are very sorry about your bad news. We want you to know that you and your family will be in our thoughts and prayers. Always think POSITIVE... If we can do anything, please let us know.

God bless you ! The Ize's. ========================================================================= Date: Mon, 25 May 1998 14:30:17 -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: BAD NEWS Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

Christine, I am so sorry to hear your bad news. you will be in my thoughts and prayers. You are strong and a fighter - keep your chin up through this tough time. I wish you the best for your surgery, treatment and recovery. Please continue to update us when you can. I think I can speak for many, you have our support.

I am sorry but I cannot volunteer currently. I am stretched between trying to work part time, remodeling our new house, moving soon and the 2 kiddos. After we move - in about 6 months or so, If you still need help, I would be glad to. Of course Brenna has Crouzons, not Aperts, I hope I could assist somehow.

Good luck with everything, Hugs Robyn J.

At 05:27 PM 5/24/98 -0700, you wrote: >MESSAGE FOR ALL, > >This message is for everyone, especially those who are on my mailing >list. > >Last Thursday I found out that I have invasive breast cancer and I will >need to have a mastectomy and then probably 6 months of chemotherapy. I >am keeping a positive outlook and hoping that it has not gone to the >lymph nodes yet (will find out at the time of the mastectomy - probably >first week in June). I am opting for reconstruction which will require a >reduction on my other side so I am focusing on "young and perky again" as >something to look forward to, ha! After 40 we can use all the help we >can get, HA!!! > >I have finally cleared all the e-mail from my box this weekend, next I >will work on the 30 or so new family packets to mail and do my best to >get the networking list out to those of you that are waiting so you can >all be able to contact each other. > >After that, I will need to cut back on my Apert work and concentrate on >getting myself back together. While recuperating I will do my best to >keep sending out packets to new families. > >Are there any families that would be willing to talk to new families on >the phone when they call? Then you can get their information and give it >to me so I can mail info. to them? If I have a few representatives >around the country to use for contacts it would help me out. > >I will try to keep up on what is going on in the listserv but I can't >promise anything. > >A newsletter will have to wait until after I am back to feeling better >but I PROMISE not to forget about anyone. I am COMPLETELY devoted to >this organization and helping as much as I can and will be back strong >again when the time comes. > >In the meantime, I have a nonprofit now so if anyone is looking for a tax >deduction I will gladly accept any donations, ha!!! > >You all take care and you will always be in my thoughts!! > >Until next time I wish you 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: Mon, 25 May 1998 19:29:16 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: JReyesmich <JReyesmich@AOL.COM> Subject: Christine Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

I just want you to know I'll be praying for you. don't forget GOD won't let you alone. all my best for you Chris take care.

Claudia ========================================================================= Date: Mon, 25 May 1998 19:57:08 -0400 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jack and Raquel <jara1@BELLSOUTH.NET> Subject: Re: American Health Network MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

LUVS2WRTE wrote: > > Was it Steven Cohen, M.D.of the Scottish Rite Children'S Med. Center? > I searched the AHN website and noticed his name. I couldn't find anything > about the program you mentioned, but I noticed tomarrow at 9 AM and 11 PM > he'll be on. If that's the same guy, it indicated he was a special guest. It > didn't say anything more. Hopefully it's the same show. > > -Andrea

Andrea,

It probably is because that is the name my brother told me. My husband also searched the web and found nothing. So if you have that channel tune in and tape it, then you can give us the scoop, because I know my brother wasn't able to tape the whole thing.

Raquel... ========================================================================= Date: Mon, 25 May 1998 21:26:14 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: GSieb91515 <GSieb91515@AOL.COM> Subject: Re: BAD NEWS Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Christine-

I am sooo sorry to hear what you are facing. My grandmother had a double mastectomy 15 years ago and she is still going strong at 93 (this past May 12th). Her mind is not all there at times, but her body has not given out. She didn't even have chemo. You were our lifeline when Jonathan was born and I don't know what we would have done without you. I keep Jonathan 's bracelet on a little teddy bear by his crib and will always remember how good it made me feel when you sent it to us.

I would be more than happy to be a contact for other families as needed. I do work but am currently setting a goal for moving my business to home by this October. I am off on Fridays and can make calls in the evening after 8 p.m. when Jonathan goes to sleep. Please remember how much you have accomplished with this support group and what you have overcome health wise in the past. You are a fighter just like our kids and I know you will get through this too. With this many people praying you can't go wrong. We wish you all the best during this very difficult time with surgery and the chemo. Please, please, please do not hesitate to reach out for our help. Your newsletters have helped so many people and we will do whatever we can to keep it going. I know you have a really heavy emotional load to carry right now.

We will keep you in our hearts and prayers and please let us know the actual surgery date when you can.

Our love from Texas,

The Sieberts George, Brenda, Melissa and Jonathan ========================================================================= Date: Mon, 25 May 1998 21:30:02 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: American Health Network Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Raquel,

Please let us know when you get the tape. I too would be very interested in viewing it.

Brenda ========================================================================= Date: Mon, 25 May 1998 21:36:58 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: ChMathis <ChMathis@AOL.COM> Subject: Re: BAD NEWS Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Christine, I'm so sorry to hear about your news. You seem to be taking it in stride, my friend from Maine had a similiar story and she is happy with her new "look". You will most certainly be in my prayers. Christina Mathis San Antonio ========================================================================= Date: Mon, 25 May 1998 22:06:51 -0400 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jim and Kelly Younkin <JimandKelly@YOUNKIN.COM> Subject: Bad news MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit

Christine, We are so sorry that you have this hurdle to get over. We will all be praying for you, and of course we would be willing to talk to any new families that you need us to. Take care, and let us know if there's ANYTHING we can do. You've started a support network that's helped us all SO much--let us help you for a while! Love, The Younkins ========================================================================= Date: Mon, 25 May 1998 20:58:46 -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: emily's surgery MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit

Janine- Glad Emily's surgery has gone well. i just loved her picture - she is a real doll. i hope she is already back to smiling. Sorry I have been so out of touch recently.We are just trying to decide between doctors and we are hearing differing views from drs - she could start surgery as early as 6/23. we are going to CHOP next week for a 3rd opinion since NYU and CHOB gave us different opinions on the necessary timing of her surgeries.

Anyway, you all have been and will continue to be in my thoughts and prayers.

Friends- Lisa ========================================================================= Date: Tue, 26 May 1998 09:41:59 -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: "Zaengle, Joseph D" <Joseph.Zaengle@UNISYS.COM> Subject: TV Show review MIME-Version: 1.0 Content-Type: text/plain; charset="iso-8859-1"

Yes, it was it Steven Cohen, M.D.of the Scottish Rite Children's Med. Center in Atlanta. We just bumped into the show while channel surfing. The section on craniofacial surgery lasted about a 1/2 hour and focused on two topics - balancing religious needs with medical care and the surgical distraction technology. The little girl who was on briefly (she started wailing and was taken for a walk by her mom) looked to be about 1 and was named Lindsey. The family is from Tennessee and were, from what I could tell, Jehovah's Witnesses. So their overriding religious concern was their need for 'bloodless surgery'. I'm not well versed in religion so I'm guessing that means no transfusions..That's how they got to Scottish Rite.

They showed a fair amount of CAT scans, before/after pictures, etc., of Lindsey, a girl with Crouzon's, and a girl with jaw problems from neurofibromatosis (sp??). There were no call in questions. ========================================================================= Date: Tue, 26 May 1998 12:52:46 -0400 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Steve & Stacy <sshb@EROLS.COM> Subject: 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 family. My daughter is 17 months and has had 3 crainal surgeries, 1 hand surgery, plus a shunt with several revisions, a trachestomy at 2 months and a G-tube and nission at 4 months. It all gets easier as time goes on. Stacy Bell

> ========================================================================= Date: Tue, 26 May 1998 13:16:38 -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: Steve & Stacy <sshb@EROLS.COM> Subject: Re: post exterior release MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

Brooke had to have a postier release at 5 months. She will probably have a 2nd postier surgery in another 3-4 months (at about 21 months of age) Stacy Bell

lisa mcgahan wrote:

> 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: Tue, 26 May 1998 13:29:06 -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: Steve & Stacy <sshb@EROLS.COM> Subject: Re: United Way Feature Child MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

Allison's : GO USA, Inc wrote:

> 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.

That's great. They will probably take alot of footage of her. Brooke is featured in a documentry called "Out of the Shadows" by the Canadian Brodcasting Company which just aired in Canada in April in a short version(45 min) and will air in the US sometime the first part of 1999. It is a series about infant-adult with congenital anomilies and what is being done and can be done to give them a "normal" life. We had cameras taping us for over 4 hrs and Brooke was featured for about 10 min in the short vesion. Stacy Bell ========================================================================= Date: Tue, 26 May 1998 13:39:57 -0400 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Steve & Stacy <sshb@EROLS.COM> Subject: Re: BAD NEWS MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

Our prayers are with you. Take care of yourself, the Apert news letter can wait. Stay positve! Stacy Bell ========================================================================= Date: Tue, 26 May 1998 14:05:17 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: Yonstein <Yonstein@AOL.COM> Subject: Re: Morgan Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Lisa:

How is it going? Sounds pretty confusing, huh! I find it the most stressful trying to decide who to listen to. How are we supposed to make a decision if we get different opinions on things? I hope you can sort it all out for your sake and Morgan's too.

Hope all of your children are doing well and you are getting some rest, although I don't know how you possibly could with triplets.

Emily is doing ok after her surgery, but the recovery is difficult. It's pretty painful for her I guess to eat and drink. She's having a hard time with it and getting up like every 2 hours in the night. This too shall pass.

Take care,

Janine ========================================================================= Date: Tue, 26 May 1998 14:08:38 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Yonstein <Yonstein@AOL.COM> Subject: Re: Morgan Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

sorry. supposed to be sent privately. ========================================================================= Date: Wed, 27 May 1998 06:00:21 +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: Brownies Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

Well, Amy is now enrolled at Brownies! I wasn't going to enrol her until she had had her third visit and was still sure that was what she wanted, but in the meantime the leader had organised her notebook and workbook and carrybag, etc, (she'd make a good saleswoman!) so that was it. Once Amy saw those she was in.

Yesterday we dealt with the issue of hands as part of their disability "training". Without telling them what we were doing we bound their fingers together across the knuckles but leaving their thumbs free. We sat in a circle and I went through the "Did you know that people with brown eyes are really kind and people with blue eyes are smart?" Wow did that get their interest! "Did you know that people who write with their left hand are REALLY smart?" Well, there were some glowing faces by then. "Did you know that if you have hurt your foot you can see fairies and if you have hurt your hand you can see goblins?" I couldn't believe they still believed me!!! I decided it was time to put a stop to that and asked if they believed what I said, told them I was talking a load of rubbish, and "Does it really mean that if someone looks different that makes them different inside or any more clever than someone else?" By that time they were getting the picture.

I then talked about Amy's hands, and how one should ask Amy if they wanted to see her hands - and how it was better to talk straight to someone who looks different instead of peering around corners at them and giggling. It was also a good opportunity to plug the bit about good touching and bad touching when I was holding Amy's hand and showing it to them - "Amy has the right to say 'No' just like you have when you don't want someone touching you".

We had a question and answer session but all they wanted to do was tell me about people they knew who were missing bits of their bodies. Only one question about Amy and that was to do with how she holds on when on the climbing frame at school.

After that I told them they had to tie the reef-knots they had learned last week!

I heard one little girl saying in an amazed voice "How does she do it?" I didn't tell her I had had a lot to do with Amy tying her reef-knot.

I don't know how much they learned, but I don't think Amy's hands will be an issue now because it is out in the open, and we had lots of laughs while we talked about it and tried to tie the knots. Amy, of course, sat beside me with her anxious smile and didn't say a word, but she told me later it was fine.

Another bridge crossed (I hope!).

Ann NZ ========================================================================= Date: Tue, 26 May 1998 22:05:36 -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: Jack and Raquel <jara1@BELLSOUTH.NET> Subject: Thought you might enjoy!! MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

What I've learned:

I've learned that you cannot make someone love you. All you can do is be someone who can be loved. The rest is up to them.

I've learned that no matter how much I care, some people just don't care back.

I've learned that it takes years to build up trust, and only seconds to destroy it.

I've learned that it's not what you have in your life, but who you have in your life that counts.

I've learned that you can get by on charm for about 15 minutes. After that, you'd better know something.

I've learned that you shouldn't compare yourself to the best others can do, but to the best you can do.

I've learned that it's not what happens to people that's important. It's what they do about it.

I've learned that you can do something in an instant that will give you a heartache for life.

I've learned that no matter how thin you slice it, there are always two sides.

I've learned that it's taking me a long time to become the person I want to be.

I've learned that it's a lot easier to react than it is to think.

I've learned that you should always leave loved ones with loving words. It may be the last time you see them.

I've learned that you can keep going long after you think you can't.

I've learned that we are responsible for what we do, no matter how we feel.

I've learned that either you control your attitude or it controls you.

I've learned that regardless of how hot and steamy a relationship is at first, the passion fades and there had better be something else to take it's place.

I've learned that heroes are the people who do what has to be done when it needs to be done, regardless of the consequences.

I've learned that money is a lousy way of keeping score.

I've learned that my best friend & I can do anything or nothing & have the best time.

I've learned that sometimes the people you expect to kick you when you're down may be the ones to help you get back up.

I've learned that sometimes when I'm angry I have the right to be angry, but that doesn't give me the right to be cruel (or to STAY ANGRY, I can change my mind.)

I've learned that true friendship continues to grow, even over the longest distance. Same goes for true love.

I've learned that just because someone doesn't love you the way YOU want them to doesn't mean they don't love you with all they have.

I've learned that maturity has more to do with that types of experiences you've had and what you've learned from them & less to do with how many birthdays you've celebrated.

I've learned that you should never tell a child her dreams are unlikely or outlandish. Few things are more humiliating, and what a tragedy it would be if she belived it.

I've learned that your family won't always be there for you. It may seem funny, but people you aren't related to can take care of you too.

author unknown...

Hope you enjoyed it as much as I did....

Good night...

Raquel... ========================================================================= Date: Tue, 26 May 1998 22:10:37 -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: foster <foster@ICONTECH.COM> Subject: UPDATE Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

Hello to all. Wanted to update you all on Billy's surgery. He had his thumbs and pinkies done on the 22nd. He also had some work done on his nails. He stayed overnight just so they could watch him. He did very well and came home Saturday morning. He has been a real trooper. He seems to have alot of pain which seems worst at night. His doctor gave us some codine for pain but we only give it to him when it seems like he needs more than tylonol. He also got his tubes in his ears. He went back to the hospital today to be checked and get his bandages changed and the doctors were very pleased with the way they are healing. We are pleased also. He is set to go back on Friday to his plastic surgeon for a checkup on his cranial surgery and he will get his bandages redone. He had more work done than we had planned therefore he also has more sore spots and stitches. This surgery seems harder than his cranial was I guess that is because he has very little use of his hands.

I am glad to see that Emily and Jordan are doing so well also. I hope everyone else who has had surgery is doing well also. And good luck to anyone else who is having any surgeries coming up.

Glad to hear that BJ is doing well and that Joanne is happy at her new job.

Andrea whats up with those Bulls?

Thats all for now Karen(PA) ========================================================================= Date: Wed, 27 May 1998 00:16:29 -0300 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Gabriel Dantur <gdantur@IMPSAT1.COM.AR> Subject: Agenesis (absence) of corpus callosum MIME-Version: 1.0 Content-Type: multipart/mixed; boundary="----=_NextPart_000_01BD8904.B1DBF9E0" Content-Transfer-Encoding: 7bit

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Dear friends,

The CT scans of Catalina's head show an agenesis (absence) of corpus callosum. As far as I know this is a connecting tissue that keeps boths hemispheres of the brain together and of course has a number of additional functions.

I've just got the written reports of our visits to different doctors in the US and they all mentioned as something worrying. I was so busy in choosing the plastic surgery team that I didn't pay attention to this agenesis before.

Our neurologist here in Argentina told us that is a typical symptom of Apert children and that the consequences of this absence can go form "nothing" to severe brain malfunction (seizures, etc) with a whole range of mild to serious problems in between.

Anybody knows something about it, or has faced the problem.

Regards from Argentina, The Danturs

PD: a JPG picture of Catalina is attached (she was 2 months old at the time, she is know three). Sorry to load the net with this heavy file but regular overseas mail to you all would be very expensive. Date: Wed, 27 May 1998 00:24:07 -0300 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Gabriel Dantur <gdantur@IMPSAT1.COM.AR> Subject: Dr. Anthony Wolfe MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit

Hi, it is me again, writing after a long time.

I would like to hear any opinion on Dr. Wolfe in Miami Children's Hospital, and specially of the technique he is using for the midface operation: "Monobloc Frontofacial Advancement" vs "Midface Le Fort III Advancement (extracranial)".

I have some good "medical" information on the subject (available to anybody wanting a copy) but I would like to have some warmer "parental" opinions.

If you want a copy of the paper: "The Monobloc Frontofacial Advancement: Do the Pluses Outweight the Minuses ?" Please email me a fax number and I will fax it.

Thanks again.

Gabriel Dantur ========================================================================= Date: Tue, 26 May 1998 23:30:33 -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: Brownies Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

>I don't know how much they learned, but I don't think Amy's hands will be an issue now because it is out in the open, and we had lots of laughs while we talked about it and tried to tie the knots. Amy, of course, sat beside me with her anxious smile and didn't say a word, but she told me later it was fine. > >Another bridge crossed (I hope!). >

Ann, well done. :-) I may ask for some advise in a couple of years :-) Sounds like the Brownies had a good lesson today that hopefully will be remembered for life!

>We had a question and answer session but all they wanted to do was tell me about people they knew who were missing bits of their bodies.

Isn't it amazing the things that kids remember?!!!

Take care, Robyn J. ========================================================================= Date: Wed, 27 May 1998 18:35:20 +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: Agenesis (absence) of corpus callosum Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

At 12:16 AM 27/05/98 -0300, you wrote: >Dear friends, > >The CT scans of Catalina's head show an agenesis (absence) of corpus >callosum.

Dear Danturs,

Our Amy also appears to have no corpus callosum. Our doctors have indicated that it may not be a problem.

Amy is now 7 years old and reads well ahead of her age . She is a bit behind in maths and a couple of years behind in drawing. I have a vague suspicion (my suspicion only) that the drawing could be connected to the lack of corpus callosum.

Regards, Howard Esler ========================================================================= Date: Wed, 27 May 1998 06:40:50 -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: Agenesis (absence) of corpus callosum

Ann

Your comments are interesting. Nobody has ever mentioned Krista's corpus callosum, so I have no idea what she's got there. However, she loves to read (although her reading comprehension is not as good as her reading or spelling ability) and hates math (I'm a physicist and mathematician, so I guess I didn't pass that gene on very well :-) ). She also loves to draw, but her drawings are several years behind what you would expect for her age. Coincidence or biology?

Bob Horning

By the way, Krista goes in for surgery again next monday (June 1). The bone/cartilage in her skull that supports the nose has disintegrated, probably because of all the work that has been done in the area. It needs to be rebuilt and then the nose cartilage will be rearranged for better positioning and opening. _______________________________________________________________________________ From: Howard & Ann on Wed, May 27, 1998 5:33 AM Subject: Re: Agenesis (absence) of corpus callosum To: Information exchange and Internet safe haven for Apert Syndrome

At 12:16 AM 27/05/98 -0300, you wrote: >Dear friends, > >The CT scans of Catalina's head show an agenesis (absence) of corpus >callosum.

Dear Danturs,

Our Amy also appears to have no corpus callosum. Our doctors have indicated that it may not be a problem.

Amy is now 7 years old and reads well ahead of her age . She is a bit behind in maths and a couple of years behind in drawing. I have a vague suspicion (my suspicion only) that the drawing could be connected to the lack of corpus callosum.

Regards, Howard Esler ========================================================================= Date: Wed, 27 May 1998 09:27:06 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: Thought you might enjoy!! Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Raquel,

Thank you for that little information it was quite an eye opener. I really enjoyed it. I think it is something we all can learn from and apply it to our everyday lives. Thank you so much for sharing it.

Lynn ========================================================================= Date: Wed, 27 May 1998 09:34:56 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: DnJJenner <DnJJenner@AOL.COM> Subject: Re: Agenesis (absence) of corpus callosum Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Thank-you for the picture it was no probalem at all to download, what a beautiful baby... 3 now? wow <smile> keeping you busy....

take care Dawn ========================================================================= Date: Wed, 27 May 1998 09:36:03 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: Lynn Thornquist <Thornq@AOL.COM> Subject: Re: Agenesis (absence) of corpus callosum Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Gabriel,

I have never heard of Agenesis of corpus callosum, so unfortunately, I cannot help you in your search for knowledge. I did, however, download the picture of Catalina, and OH MY GOODNESS, WHAT A CUTIE!!!!! She is very beautiful and pink looks wonderful on her.

Sorry I couldn't help with what you need. Good luck getting information.

Lynn Thornquist ========================================================================= Date: Wed, 27 May 1998 10:00:42 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: JPayne5634 <JPayne5634@AOL.COM> Subject: Fwd: IRC Big Chat Nite TONITE 5/27 Mime-Version: 1.0 Content-type: multipart/mixed; boundary="part0_896277642_boundary"

This is a multi-part message in MIME format.

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From: JPayne5634 <JPayne5634@aol.com> Return-path: <JPayne5634@aol.com> To: crouzon@u.washington.edu Subject: IRC Big Chat Nite TONITE 5/27 Date: Wed, 27 May 1998 10:00:03 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 let's get acquainted with each other! :) Keep in mind that some people will show up later then the time started!! Please join us!!

Date to Meet On: May 27, 1998

IRC Server: ChatNet (Any Locations)

Port Setting: 6667

Channel: #apertcrouzon

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

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

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 dont have to be a member to join AOL IM and its free!! AOL IM is a one to one online chat!! My AOL IM is Lauren1273

Hugs,

Lauren

JPayne5634@aol.com

--part0_896277642_boundary-- ========================================================================= Date: Wed, 27 May 1998 12:25:40 -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: Steve & Stacy <sshb@EROLS.COM> Subject: Re: Dr. Anthony Wolfe MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

Please fax the info , I would love to read it. Thanks so much. Stacy Bell fax# 410-969-2034

Gabriel Dantur wrote:

> Hi, it is me again, writing after a long time. > > I would like to hear any opinion on Dr. Wolfe in Miami Children's Hospital, > and specially of the technique he is using for the midface operation: > "Monobloc Frontofacial Advancement" vs "Midface Le Fort III Advancement > (extracranial)". > > I have some good "medical" information on the subject (available to anybody > wanting a copy) but I would like to have some warmer "parental" opinions. > > If you want a copy of the paper: > "The Monobloc Frontofacial Advancement: Do the Pluses Outweight the Minuses > ?" > Please email me a fax number and I will fax it. > > Thanks again. > > Gabriel Dantur ========================================================================= Date: Wed, 27 May 1998 10:39:36 -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: Surgery for EvaJessie Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

Just got word yesterday that EvaJessie's tissue expansion will go ahead this summer. We are working out the details for the twice weekly injections, but we now know that the first surgery will take place June 10. So far we've booked our flights to Vancouver and a stay at Easter Seal House. Now the prep begins. I'll start by getting rid of these butterflies in my stomach.

Talk to you all soon. Pat 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: Wed, 27 May 1998 12:42:22 -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: Carlos 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 Andrea's and EvaJessie's pictures yesterday. Thanks for the pictures, you both look wonderful!

We wish good luck to EvaJessie and everybody else that is going to have surgeries. We wish a speed recovery for those of you that had surgeries recently.

Now you can look for Felipe's and Rafael's picture on your mail box. We've sent out 50 pictures. We also want to thank you again for those wonderful pictures that we have received. It is about 25 pictures. We hope to receive the others very soon!!!

Best wishes to all! The Ize's. ========================================================================= Date: Wed, 27 May 1998 14:22:09 -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: Good going Ann: Scott Comments: To: AOL User <MHTeach102@AOL.COM> Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

Hello Ann:

I've just come up from the horror that has become our community following the murders in our school and community. I have so enjoyed reading your wonderful story about Amy and introduction to and for the Brownies. How precious. How wonderful. Good going, Ann!

All the best, Scott Pengelly Eugene, Oregon USA ========================================================================= Date: Wed, 27 May 1998 14:54:42 -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: Surgery for EvaJessie Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

Pat, good luck to you and EvaJessie. We will keep you in our thoughts and prayers. I hope everything goes smoothly. EvaJessie is a little toughie! Mommy too! :-)

>I'll start by getting rid of these butterflies in my stomach.

Please do share if you figure a way to get rid of them!!! :-) I get butterflies just thinking of our next surgery and we are a ways off.

Again good luck, and big hugs to you both! Robyn & the Plum ========================================================================= Date: Wed, 27 May 1998 21:05:09 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: "<George Siebert>" <GSieb91515@AOL.COM> Subject: Re: Surgery for EvaJessie Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Pat- Good luck with the tissue expansions. Is this for Eva Jessie's hands. Does she have aperts? I don't know why but I thought she had a cleft palate only. I'm already getting butterflies before our next hand surgery on the 5th. Best wishes for success.

Gabriel- We would love the article. Please fax it to (281) 852-6884. We have never been told anything about missing corpus collosum but did have some concern with Periaventricular leukomalacia from J's MRI at birth. However, it seems to have vanished since then.

Raquel- Thanks so much for the "What I've Learned". I loved it and will pass it on to others to read. If only