========================================================================= Date: Tue, 28 Apr 1998 23:11:42 -0600 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Brett and Heidee Lindsey <blhlfam@JUNO.COM> Subject: hello

Hi everyone! I've been lurking on this list for about a month. My original idea was to get to know who's who and what's what; But it's going to take a bit longer! I saved all of the intro letters when others joined. My third child, Joshua, born 11-6-96, has Apert. I'm Heidee, my husband is Brett. We live in Utah, in a suburb of Salt Lake City. Josh has had 5 surgeries so far - his big cranial-facial and hand surgeries. His hands were done bilaterally. But the nest one we'll do them separately. He had such a hard time with both his hands in casts this last time. He was getting pretty good at feeding himself and playing with toys, so he got very frustrated when he could no longer do those things. But, I'm glad that we did have the first ones done together. The Dr. is optimistic about him having all of his fingers separated. Joshua's thumbs are just stumps, and on one hand, the thumb is just a flap of skin. Joshua's cranial-facial surgeon is great!!! He was able to use a newer product in josh's reconstruction so Josh has absolutely NO METAL in his head. The bone just grows through and around the material.

I have a suggestion for making the taking of blood go a bit smoother. I insist that a Life Flight nurse or an anesthesiologists draw his blood. At times I will let a very experienced take it if they can use his foot. We too have had very traumatic experiences when this has had to be done.

Overall, Josh is very healthy. He is very large - 30 lbs and 30" long at 18 months. Now if we could only get him to walk! My back is always sore from carrying him. I bring a stroller everywhere. We have been very blessed with great drs. Our primary care doc is always supportive and even calls other docs to make appts. for us.

I know of 3 other kids with aperts in Utah; but would like to know more. These get-togethers sound like fun. So if you are in the intermountain area or have work done at Primary Children's Hospital, please let me know so we can get together.

Sorry this is so long winded, but I 've been thinking about this for a long time, and besides I feel like I already know a lot of you!

Take Care, Heidee Lindsey

_____________________________________________________________________ You don't need to buy Internet access to use free Internet e-mail. Get completely free e-mail from Juno at http://www.juno.com Or call Juno at (800) 654-JUNO [654-5866] ========================================================================= Date: Wed, 29 Apr 1998 07:49:47 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: Jenngram <Jenngram@AOL.COM> Subject: Re: hello Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Welcome Lindsey family. I'm Jennifer Graham, my son Jordan is almost 8 mos. old..and quite the big guy himself.....18 lbs. and 28 in. long!!! HAH!! ANd they tried to put in a feeding tube!!!! Welcome to the group, I'm sure you'll enjoy it as much as I have!!!

Jenn(TAmpa/St.Pete) ========================================================================= Date: Wed, 29 Apr 1998 07:34:03 -0600 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Chad & Denise Graham <cgraham@INFOAVE.NET> Subject: hello MIME-version: 1.0 Content-type: text/plain; charset="us-ascii"

Welcome to the Lindsey family. My son was born on 2-24-96. His name is Daryl and weighs a good 35 lbs and is 34 inches long. He is healthy as well. We have had 8 surgeries so far with more in the fall. I wanted to put them off until after summer. I wanted to have a normal family summer camping, and other stuff without having to worry about casts and wraps. We are from Shelbyville, TN. Glad to get to know you and will be looking foward to talking with you on the listserver.

Hope everyone is doing well before and after surgeries. I need to get a list too, to keep up with everyone.

Well wishes to BJ and family.

Thanks for the pics update, I will be sending pictures out today!

Denise Graham ========================================================================= Date: Wed, 29 Apr 1998 09:57:42 -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: Christopher Kilner <Christopher.Kilner@USPTO.GOV> Subject: Please add us (Photo exchange) MIME-Version: 1.0 Content-Type: text/plain

Hello everyone,

Sorry for jumping in so late, but we would love to have Ceci's picture included in the photo exchange. I've picked a photo that isn't on the Web page.

The Kilner Family 6571 Sand Wedge Ct. Alexandria, VA 22312 ========================================================================= Date: Wed, 29 Apr 1998 10:03:09 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: JPayne5634 <JPayne5634@AOL.COM> Subject: IRC Chat Tonite 4/29/98 Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Hi everyone!!

Tonite is IRC Big Chat NIte!! So let's get acquainted with each other :)Keep in mind that some people will show up a little later then time started. Please join us.

Date to Meet On: April 29. 1998

IRC Server: ChatNet (Any Locations)

Port Setting: 6667

Channed #apertcrouzon

Time: 11:00pm AT/ 10:00 pm ET/ 9:00pm CT/ 8:00om 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 IRCle at http://www.amug.org/~ircle/

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

You dont' have to be a member to join AOL OIM and it is free!!! AOL IM is an one to one online Chat. My AOL IM is Lauren1273

Hugs,

Lauren ========================================================================= Date: Wed, 29 Apr 1998 09:18:58 -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: Please add us (Photo exchange) MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

Christopher Kilner wrote: > > Hello everyone, > > Sorry for jumping in so late, but we would love to have Ceci's picture > included in the photo exchange. I've picked a photo that isn't on the > Web page. > > The Kilner Family > 6571 Sand Wedge Ct. > Alexandria, VA 22312

Hello Christopher and Family,

We would love to have Ceci's picture on Felipe's scrap book.

Thank you, The Ize's. ========================================================================= Date: Wed, 29 Apr 1998 09:39:29 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: ize <ize@TACOMA.CEATLABS.OKSTATE.EDU> Subject: Re: hello MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

Welcome to Lindsey Family!

We are the Ize's from Stillwater, Oklahoma. We have 2 1/2 years old twin boys Felipe and Rafael. Felipe was born with Apert's. He is a Healthy, smart and happy kid. Like you, we also carry the stroller everywhere we go. Felipe started walking when he was 14 months old, but we have to take care of two kids at the same time. The stroller is definitely a good helper. Welcome again and hope to hear more from you!

Best wishes, Claudia, Carlos Rafael and Felipe Ize. ========================================================================= Date: Wed, 29 Apr 1998 12:47:53 -0400 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: foster <foster@ICONTECH.COM> Subject: Hello Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

Hello and welcome to the Lindsey family. We are the Fosters and we live in Scranton,PA. We have seven children and our youngest Billy was born with aperts. He is almost fourteen months old. I am sure you will love this server as much as we all do, it is one big happy family and the support is wonderful.

I also would like someone to forward the list for the picture exchange please. I am thrilled that Ceci will be included. It will make this exchange complete.

Hope all is well with everyone.

Karen (PA) ========================================================================= Date: Wed, 29 Apr 1998 13:36:45 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Camous <Camous@AOL.COM> Subject: Picture list labels Mime-Version: 1.0 Content-type: multipart/mixed; boundary="part0_893871405_boundary"

This is a multi-part message in MIME format.

--part0_893871405_boundary Content-ID: <0_893871405@inet_out.mail.aol.com.1> Content-type: text/plain; charset=US-ASCII

Attached is the picture list. It is a word-perfect 6.1 label file so is ready to go. Should be convertible to Word also.

Marianne

--part0_893871405_boundary-- ========================================================================= Date: Wed, 29 Apr 1998 14:12:47 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: Camous <Camous@AOL.COM> Subject: Re: blood tests Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

In a message dated 4/28/1998 8:27:06 AM Pacific Daylight Time, rjrtait@MARS.ARK.COM writes:

> Marianne, what is the "Bentz" book?

Pediatric Plastic Surgery ed by Michael Bentz, MD (he's the hand surgeon at Children's Hospital of Pittsburgh- did Evan's hands) Has a lot of good info on hands, cranio procedures, cleft palate, etc. Published by Appleton Lange, expensive, so look in your medical or hospital library first.

Marianne ========================================================================= Date: Wed, 29 Apr 1998 14:28:43 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: Camous <Camous@AOL.COM> Subject: blood draws and tissue expanders-and the label file Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

A couple of quick things....

EMLA is good if available for blood draws, however the time involved is a drawback in an outpatient setting. Working in a busy ER, we often use LET (lidocaine-epinephrine-tetracaine) for topical anesthesia in lacerations. It only takes 15 minutes to be effective and I'm wondering if this would be useful for blood draws or IV starts?? I believe it is effective on intact sckin- I'll try to pull an article. Even though this may be used extensively in the ER or Urgent Care, sometimes it is just not a well-known commodity in the lab or blood bank. Sometimes all it takes is pressing the point in a firm but polite manner.

It's heartening to hear about successful use of tissue expanders. It's logical that it should work but I did read some studies which found them to be ineffective. Our surgeon has taken skin from a Pfannensteil incision (ie a bikini incision as is used for C-sections) in the lower abdomen. These eventually look like skin folds and are barely noticeable, but have done really well and without the need for extensive splinting (7-10 days, then simple dressing changes for about another week). The interesting part is that every plastic surgeon has their own regimen....bet the long-term outcome is very similar regardless of the hoops you jump through. That's the art (as opposed to the science) of medicine!!

Off to do some of my own art and science in the ER tonight!

Marianne PS I'd be curious to know if sending the label file as an attachment actually works.- Oh and it's for Avery 5660 labels 1"x 2 5/6" 30 labels per sheet ========================================================================= Date: Wed, 29 Apr 1998 12:40:07 -0600 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: baconsmith <bluenose@TELUSPLANET.NET> Subject: Re: blood draws and tissue expanders-and the label file Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

Hi, we have used EMLA as well as other techniques to help the blood draw situation with my daughter (The Peach).

As for tissue expanders, we will be doing htis for our next procedure, but not for hands, but for the face. This should be interesting -- we are trying to create a cheek for my little girl as she has a dearth of tissue there. I hope to document the process wiht photos as we go -- although it doesn't correspond to your kids' hands, it is still tissue expansion.

Still a ways off on this tho.

have had pix come in from Lynn Rich and Andrew and Denise and Daryl. Boy these little characters are adorable. Thanks and we'll get ours out in the mail soon -- we have a fifth birthday party happenign here shortly and will get extras of the pix.

Also Lynn, got the Upton book. You were so fast and efficient -- many thanks again. I'll add it to the resource list for our craniofacial families here at Alberta Children's Hospital in Calgary.

bye for now. Pat email to: bluenose@telusplanet.net IM: onlypeach shake and shake the ketchup bottle. none will come and then a lot'll ... unknown ========================================================================= Date: Wed, 29 Apr 1998 15:02:08 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Camous <Camous@AOL.COM> Subject: picture list-another try Mime-Version: 1.0 Content-type: multipart/mixed; boundary="part0_893876528_boundary"

This is a multi-part message in MIME format.

--part0_893876528_boundary Content-ID: <0_893876528@inet_out.mail.aol.com.1> Content-type: text/plain; charset=US-ASCII

Seems like the attachment didn't attach. In the meantime I realized I attached the unedited file-so here's the right one and I have added the Kilner and Mathis families.

Here goes!!

Marianne

--part0_893876528_boundary-- ========================================================================= Date: Wed, 29 Apr 1998 15:13:06 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: hello Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Welcome to the Lindsey family!!!! This is a wonderful place to be, as I'm sure that you already know that. My son Andrew was born on 9/5/96, and like Joshua is a very big boy. He weighs 31pounds, and is 35 inches long. Don't worry about the walking, it will come very soon. Andrew did not start walking until he was about 17 months, so you don't have long. Is Joshua standing independantly, as well as pulling to stand? All I did is help Andrew walk for a while, it hurt my back, but it is so much better now that I don't always have to carry him. I can empathize with the taking of the stroller everywhere you go. I was once out with my mother-in-law and she said to me, "no need to bring the stroller, we're only going to be a couple of minutes, I'll carry him." Well, let me tell you, she found out very quickly why the stroller was important. Do you have a PT to help with his walking and give you suggestions? Our PT is wonderful and I truly believe that Andrew would not be doing the things he is doing if it weren't for her. Just like you, Andrew's next hand surgeries are not going to be done bilateral because of the frustration aspect. His Dr. will start thinning down his fingers when he is three. It was really nice talking to you and again welcome to the listserver. Feel free to e-mail me personally anytime.

Lynn Thornquist Thornq@aol.com ========================================================================= Date: Wed, 29 Apr 1998 15:21:43 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: Re: picture list-another try Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Marianne,

I may be a stupid person on the computer, but how do I receive the attachment? I understand downloading, but attachments is new to me. Could anyone help with this? Another thing, I don't know how to make a downloading message (does that make sense). Please help me.....everyone sends me these things to download and I do, and I love it, but I don't know how to do it. Thanks in advance.

Lynn ========================================================================= Date: Wed, 29 Apr 1998 15:39:55 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Thornq <Thornq@AOL.COM> Subject: Many things..... Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Hello to everyone!

It's Lynn and I haven't been saying much lately because we're at that point where nothing is going on and I don't know much about what has been said lately. But I do have a couple of things to say and a couple of questions to ask. Here it goes.......

In a couple of weeks, Andrew will be going to visit his neurosurgeon, which we do only once a year now. I asked about doing a CT Scan, and the nurse said that there wasn't anything in the notes, but to withhold food and fluids from him just in case. Does anyone out there have CT Scans regularly (once a year or so)? We have only had one and that was just before his first cranial surgery. They said that Andrew has large ventricles, anyone else heard that? Next question....I want to know at what ages everyone's kids started talking. I understand that Apert children talk late, and Andrew being a boy and the first & only child doesn't help, but part of me is worried. We are trying a couple of signs to speed it along and he understands a ton!!!! Should I be worried, or just let it take its course? I'm getting so much flack from my husband's family about it. Whenever I show some concern, they say "oh he will do it". They think I worry about too much. My mother-in-law is always saying that things that Andrew does and doesn't do isn't the Apert, it is just him being him. I wish they would all just put their guilt and anger aside to see that Andrew needs extra help with therapists. It would take me forever to explain my in-laws and you all don't want to hear that.

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

About the book..... I have about 5 or so copies to be made and sent out, I will be doing them all within the next week. I will have to stop there with the ones that I have already gotten requests from because work is telling me that it's getting to be too much. Also, Dr. Upton wants his book back. So I apologize to those who are just joining the listserv, but the offer has been out there for two months now. And I apologize for the delay, but I can only make copies when my company has time. They have alotted time for me this weekend, so hold on, it will be a mass mailing.

About the pictures...... I will be getting Andrew's pictures tomorrow, because they weren't done when I went in yesterday, but they are coming. I probably have about 40 addresses, is that correct, or should I have more?

Don, I'm ready to join teeter's page. Please e-mail me and let me know (again) what you need. I had to convince my husband to do it. Thornq@aol.com

I think that does it, sorry so long. Talk to you all later.

Lynn ========================================================================= Date: Wed, 29 Apr 1998 15:46:22 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Camous <Camous@AOL.COM> Subject: Re: picture list-another try Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Lynn, Don't feel bad- it took me awhile to figure it out. And now with AOL 4.0 i can't seem to get it to work. Actually an attachment is a separate file sent in it's entirety which can be downloaded (or moved onto the drive you specify so you can open it later) for your use.Usually on the old AOL it would come with an "attachment" button which you would click, then it would ask you if you want it opened or where you want it filed. Then you can use it as you need (ie the label program). But when I get a copy of this one with my ;label file attached, I can't seem to gind the attachment.

Anyone else using the new version of AOL that has figured this out?

Marianne ========================================================================= Date: Wed, 29 Apr 1998 15:45:15 -0400 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "Zaengle, Joseph D" <Joseph.Zaengle@UNISYS.COM> Subject: Sleep Study MIME-Version: 1.0 Content-Type: text/plain; charset="iso-8859-1"

We're (actually Dad was elected) taking Quentin, age 5, for a sleep study this weekend based on a recommendation by his craniofacial team and the pulmonologist who just examined him. Any words of wisdom to make the setup for the study any easier? The techs say it takes awhile to hook up everything and I'm concerned about how he's going to react to it all.. thanks! ========================================================================= Date: Wed, 29 Apr 1998 16:16:35 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jenngram <Jenngram@AOL.COM> Subject: Re: Many things..... Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Jordan had a CT done after his cranial surgery..he had several when he was first born..those first ones did show slightly enlarged ventricles, but the neurosurgeon used them as a baseline for Jordan...as he put it..everyone is different..no 2 EKGs are alike..no 2 brains are alike..this is normal for him, and as long as it stays then we are ok..I guess it has b/c all other studies have been fine...I think our next CT is in 6 mos. though. ========================================================================= Date: Wed, 29 Apr 1998 16:19:06 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: Jenngram <Jenngram@AOL.COM> Subject: Re: Sleep Study Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Jordan did well w/ all the hook ups..its quite Frankeinsteinish...but he was soo curious..until the nasal cannula..then he cried in fits until he crashed..and slept the night and they got a great study which showed no problems.....soooo, if he fusses..it'll be that much easier for him to fall asleep!!!!

Good Luck

Jenn (Tampa/st. Pete) ========================================================================= Date: Wed, 29 Apr 1998 16:26:04 -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: Welcome Lindseys! MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit

Hello and welcome to the Lindsey family. We are Robin and Mike Hill from Newnan, Georgia (30 miles southwest of Atlanta, GA). Our daughter, Carmen Rae, was born on 1/18/98 with Apert Syndrome. We joined the list in February and think it is wonderful! We are sure you will find the same! ========================================================================= Date: Wed, 29 Apr 1998 12:43:47 -0700 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "Christine L. Clark" <apertnet@IX.NETCOM.COM> Organization: Apert Support & Information Network Subject: Picture request MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

While sending pictures, please send one to the Apert Support & Information Network to be added in a future newsletter.

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

Thanks,

Christine ========================================================================= Date: Wed, 29 Apr 1998 16:17:54 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Judy Amerman <jamerman@UTI.COM> Subject: Fw: 3nd update.. pic exchange list.. 4th new addresses added MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit

---------- > From: cal <cal@PHOENIX.NET> > To: APERT@LISTSERV.AOL.COM > Subject: Re: 3nd update.. pic exchange list.. 4th new addresses added > Date: Thursday, April 23, 1998 12:08 AM > > cal wrote: > > > > Tim wrote: > > > > > > APERT LIST..... Picture Exchange > > > > > > Rachel Fletcher > > > 3900 Vernon > > > Memphis, Tn 38122 > > > > > > Janine Krebs > > > (Emily) > > > 187 Rhode Island Avenue > > > Massapequa, New York 11758 > > > > > > Andrea Gartner > > > 11394 Royal Tee Cir. > > > Cape Coral, FL 33991 > > > > > > Denise Graham > > > (Daryl) > > > 1030 Fairfield Pike > > > Shelbyville, TN 37160 > > > > > > Ann Luxton and Howard and Amy Esler > > > 6 Peter Mulgrew Street > > > Avondale, Auckland 7 > > > New Zealand > > > > > > Jennifer Graham > > > 6220 7th Ave North > > > St. Petersburg, FL 33710 > > > > > > Carmen Rae Hill (Mike and Robin Hill) > > > 70 Woodmoor > > > Newnan, Georgia 30263 > > > > > > The Bacon Smith Family > > > 100 Clarendon Road, NW > > > Calgary, Alberta, Canada > > > T2L 0P3 > > > > > > Carol Graves > > > (Nicholas) > > > 370 Oakland Rd > > > Madison, AL 35758 > > > > > > Joanne Lindamood > > > 1533 Regent Avenue > > > Springfield, OH 45503 > > > > > > Raquel Miller > > > (Nicole) > > > 16703 Redwood Way > > > Weston, Fl. 33326 > > > > > > Judy or Nick Amerman > > > 1035 E. Fairview Ave. > > > Morris, Il. 60450 > > > > > > The Sieberts > > > 5226 Walnut Peak Ct. > > > Kingwood, TX 77345 > > > > > > Felipe Ize > > > 124 Brumley # 10 > > > Stillwater, OK 74074 > > > > > > The Jennerjohns > > > 6987 Ridgetop Dr. N E > > > Kiezer, Oregon 97303 > > > > > > The Smith's (Patti, Daniel & Jasmyn) > > > 1538 Morgan Road > > > San Bernardino, CA 92407 > > > > > > Dori Jefferson > > > 83 Pine Lane > > > Murphysboro, IL 62901 > > > > > > The Lynch Family > > > P.O. Box 609 > > > Lake George, NY 12845 > > > > > > Quentin Zaengle > > > 119 Tudor Drive > > > North Wales, PA 19454 > > > > > > The Bailey Family > > > RR 1, Box 74 > > > El Paso, IL 61738 > > > > > > Lynn Thornquist > > > 4 Taylor Road > > > Holliston, MA 01746 > > > > > > Leann Maclean > > > RR 2 Site 4 Box 35 > > > Onoway, Alberta, Canada > > > TOE 1VO > > > > > > Roxanne Chan > > > 16240 East McGill Road > > > La Mirada, CA 90638 > > > > > > Vivi Zhang > > > 2279 Pinehaven Dr. > > > Niskayuna, NY 12309 > > > > > > Ellen Kelley > > > (Holly) > > > 411 Spring Mill Rd > > > Anderson, IN 46013 > > > > > > Jennie Muggli > > > Rt 1 Box 105C > > > Weimar, TX 78962-9530 > > > > > > Kris Contreras > > > 1422 N. Park Ridge > > > Deer Park, TX 77536 > > > > > > Mark and Michele Smith (Kayla and Megan) > > > 208 Connecticut Avenue > > > Warren, PA 16365 > > > > > > Morgan Kaye McGahan > > > 11 Elsway Road > > > Short Hills, New Jersey 07078 > > > > > > Jones Family (Jerold, Colleen, Julianne, Jacob and Jessica) > > > RR 3 Box 275 > > > Middleburg, PA 17842 > > > > LeCara Family (Sarah, Tamara Charles > > 8907 Gauguin > > Houston,Texas 77088 ========================================================================= Date: Wed, 29 Apr 1998 16:37:24 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: tim graves <timg@BELLSOUTH.NET> Organization: home Subject: pic exchange lists MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

Here are some addressed that I have at the end of my pic list, not on the one just sent if you need these also:

Foster Family 1335 Sanderson Ave Scranton,Pa 18509

Diane Youngblood 445 Horne Hollow Rd. Culleoka, Tn. 38451

Robyn Johnston PO Box 25633 Eugene, OR 97402

The Contrinos 7310 Norman Road North Tonawanda, NY 14120

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

Margaret Iucker c/o Joana Magno 811 Moaniala St. Honolulu, HI 96821

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

The Kilner Family > 6571 Sand Wedge Ct. > Alexandria, VA 22312

Apert Support & Information Network P. O. Box 1184 Fair Oaks, CA 95628 ========================================================================= Date: Wed, 29 Apr 1998 16:39:03 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Judy Amerman <jamerman@UTI.COM> Subject: Talking MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit

Lynn, Nick only said about twelve words when he started school at age three. He is now going to be eight on Sunday and he never shuts up. Your day will come, trust me. He is annoying sometimes because his mouth is always going, but I'd really miss miss it if I didn't hear it. Most of his words are understandable but he is still getting speech at school. When Laurie Bailey was here, she understood him real well, and can vouch that he is a real vocalizer. Hope this helps.

Marianne, Did your attachment ever come through yet? Because if it did, I missed it.

I have a question. I had Teeter's page in my favorites. Then I also put Nick's page in my favorites. Now when I pull up Teeter's page I get Nick's page with no pictures. Does anyone know why? But when I pull up Nick's page in favorites ,I do get his photos. I guess when Don gets back and gets this page worked on I should be ok.

Laurie, Any takers yet?

Judy jamerman@uti.com ========================================================================= Date: Wed, 29 Apr 1998 18:03:20 -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: Picture request MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

Christine L. Clark wrote: > > While sending pictures, please send one to the Apert Support & > Information Network to be added in a future newsletter. > > Apert Support & Information Network > P. O. Box 1184 > Fair Oaks, CA 95628 > > Thanks, > > Christine

Hi Christine,

We sent Felipe's picture to you when we subscribed on the listserv two years ago. We would be happy to send you another one, but if you don't mind we would love to have your doughter's picture on Felipe's scrap book also.

Thank you, The Ize's. ========================================================================= Date: Wed, 29 Apr 1998 18:10:47 -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: Thank you MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

Today we received Emily Helen and Carmen Rae pictures. They are so precious!!!

Thank you! The Ize's.

We are counting the days to see Felipe off of his casts to get his picture and send to you all. ========================================================================= Date: Wed, 29 Apr 1998 19:31:44 -0400 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: HAROLD E TYRE <HETSRT@PRODIGY.NET> Subject: Re: Carmen Rae's Picture MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit

Hey, not totally true, I don't have the pose with the plastic Easter eggs! Anyway it is well known that Grandmas must have a copy of every picture ever taken of their FIRST Grandbaby! I am looking forward to seeing all of the childrens pictures. Have seen Jordan so far. Quite a handsome young man. Thanks again to all of the parents and children (grown ones too) on the listserver for the helpful and encouraging information and pictures. Sherry Tyre (Carmen Rae's grandma) ROBIN L HILL <CARMENRAE@PRODIGY.NET> > To: APERT@LISTSERV.AOL.COM > Subject: Carmen Rae's Picture > Date: Tuesday, April 28, 1998 8:33 PM > > Well, it seems my little one is finally arriving at destinations all over > the place! I just wanted to let everyone know that we have run out of > pictures, so if you haven't received yours, it is coming soon! > > Robin Hill > > P.S. We probably wouldn't have run out so soon if Carmen Rae's Grandma > hadn't needed one of each pose!!!!!! Just kidding mom; I added this > comment cause I knew you'd be getting this message on the listserver! ========================================================================= Date: Wed, 29 Apr 1998 20:46:10 +0000 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "J. G. Lindamood" <chanan8@JUNO.COM>

Hello Family! Welcome to Heidee and Josh Lindsey and company! I'm Joanne, I'm 33 and have Apert's. I'm on this list for two reasons, one to learn more about what you are experiencing and secondly, to help you with what you are experiencing. I have not had the number of surgeries Josh and the other kids have had and function independently just fine. But I have the experience like Lynn's with children asking the whys and what happened questions. Although it's not easy, I try to explain the best way I can for them to comprehend what happened. Every now and then (rarely) I will come across a rude adult and I develop a real attitude problem and make up some obnoxious story about glue and getting to much on my hands. But for the most part I like to explain why and try to help them understand differences. That's my mission in life. Welcome to the family!

Lynn, I understand wanting to protect your child, but it is my opinion that he needs to learn how to do things his way and sometimes that means taking a risk. If my mom protected me all of my life I would have never learned to use two hands to pick up a straw. Or when you lean over the jack in the box (I know, my age is showing) while you are cranking the handle, you will get smacked in the head. These are small examples, but that independence I gained with these lessons grew and I'm living on my own (pardon me, with two birds) and am okay. Off the soap box!

I received Carmen Rae's and Emily's pictures!!! ADORABLE! I'm debating on how to get a family photo. It's going to be interesting!

Joanne, humid, cloudy, yucky, Ohio

_____________________________________________________________________ You don't need to buy Internet access to use free Internet e-mail. Get completely free e-mail from Juno at http://www.juno.com Or call Juno at (800) 654-JUNO [654-5866] ========================================================================= Date: Wed, 29 Apr 1998 21:05:48 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: GSieb91515 <GSieb91515@AOL.COM> Subject: Re: hello Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Welcome Heidi and Josh!

We are the Sieberts in Houston (Brenda, George, Melissa (8) and Jonathan born 1 month later than Josh. He just had his second cranial surgery and we still have 3 more hand surgeries left to release all the fingers. My, Josh is a big boy. Jonathan is about 23 lbs. now and has really developed quite a pot belly. He started to walk at about 14 months and still has quite a wide gait. I'm really concerned with his speech though. He says da da and na na and grunts a lot, but so far no sign of the "M" sound or "B". We are having a speech consult on May 6 to talk about starting speech therapy. I believe it can only help. What is the material you referred to in place of any metal? I'd love to hear more about that.

Best wishes and we look forward to hearing more from you.

Brenda Siebert Houston (It has been absolutely gorgeous weather--very uncharacteristic for this time of year. It is usually very hot and humid already.) ========================================================================= Date: Wed, 29 Apr 1998 21:09:22 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: GSieb91515 <GSieb91515@AOL.COM> Subject: TEETER'S PAGE Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Is anyone else still have problems pulling up Teeter's Page. We are still getting Nick's page with no photos. If anyone knows how to correct this, please advise.

Thanks!

Brenda Houston ========================================================================= Date: Wed, 29 Apr 1998 21:15:42 -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: Pictures MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

Hello all.....

I haven't been at the computer since Monday morning (stomach virus) wasn't feeling too well. I'm better, but boy 121 e-mails to catch up with (thats great)..

Robin, we received Carmen Rae's picture, what a cutie in that Easter dress.

Janine, we also received Emily's picture she somewhat resembles our Nicole.

We will be mailing Nicole's pictures hopefully the beginning of next week.

See ya...lots of catching up to do...

Raquel Miller.. ========================================================================= Date: Wed, 29 Apr 1998 21:24:39 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: GSieb91515 <GSieb91515@AOL.COM> Subject: Re: blood draws and tissue expanders-and the label file Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Marianne-

How do I access the attachment and convert to word? I'm sorry but I'm not that computer literate with the programing stuff. Jonathan's incision is like Evan's I think. They take from basically the same place and do like a tummy tuck. However, it is a reddish purple color and almost an inch wide. Will this fade over time and blend in more. We also haven't had splints or casts either. Rather just wraps for about 7-10 days and then changes every week after for a total of about 3 weeks. The challenge is keeping the wraps on inbetween changes. It did get better with the last hand surgery when he was walking more than crawling. Thanks for the label list.

Brenda Houston ========================================================================= Date: Wed, 29 Apr 1998 21:35:46 -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: Cold MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

Well, my nerves are now definetly SHOT.... Nicole's surgery is next week Thursday 05/07 a week from tomorrow....and guess what she started a new cold yesterday......Like we haven't been waiting for this moment to come and go and now what???

I don't know if one week is enough time for the cold to get better and go away.....I don't think I can take more of this, all I've done today is cry.....I'm sorry but everyone that I have been crying to today have no idea....You guys are the only people I can cry to and know exactly what I am going through.....So I am crying.....Has anyone experienced this before (a week before surgery) have they gone through the surgery or did they postpone?

We had two appointments today with the neurosurgeon and then right after with the plastic surgeon, you know the last visit before the surgery, but the neurosurgeon cancelled because he was called on an emergency surgery. So I went ahead and cancelled the plastic surgeon because it was raining (after weeks of no rain) and since Nicki has her cold I didn't want to make matters worse. So I mentioned the cold to the neurosurgeons secretary and she said that two days prior to surgery if she still has a bit of a cold, she will have to go to her pediatrician for an o.k. for surgery and also probably the anesthseologist (sorry about the spelling) would have to give the o.k. I don't know if this is the normal procedure when there is a cold, I mean this came from the mouth of the secretary not the doctor. I think we will re-schedule the visits for either Friday or Monday, I guess by then we should know if the cold is getting better or worse.

I'm so sorry about all this rambeling I was just so psyched up about the surgery being next week and now with this cold its a possibility it won't happen next week, I'm going to run out of nails to bite.....

If anyone has gone through this maybe you can enlighten me a bit....

Thanks all...

Nervous Raquel in well needed rainy south Florida... ========================================================================= Date: Wed, 29 Apr 1998 21:47:27 -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: Teeters Page MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

Don, I tried again and I still get Nicks Page no pictures etc. We are using Bellsouth...

Raquel... ========================================================================= Date: Wed, 29 Apr 1998 21:45:59 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: LUVS2WRTE <LUVS2WRTE@AOL.COM> Subject: Re: Teeters Page Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

I have the same problem. Im using AOL and netscape ========================================================================= Date: Wed, 29 Apr 1998 22:04:04 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Yonstein <Yonstein@AOL.COM> Subject: Many, many things Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Hello all:

Well, here it is Wed. night after my 3 day work week and I have to catch up with what is going on with everyone. I really miss not reading my mail every day.

Let me start be welcoming the new families, the LeBras from France and the Lindsey family from Utah. I am sure you will find this list as helpful and supportive as I have found it. (My daughter Emily is 9 months old)

To Zoey, hope you are feeling better and over your pneumonia and able to enjoy your new pinkies and thumbs.

To Julia, hope you are doing well after your palate surgery and sleeping better at night (for Mom and Dad, too.)

I have received pictures of Daryl, Jordan and Carmen Rae. They are absolutely adorable. I am very excited and check my mail as soon as I come home for the other photos. To anybody that did not get Emily's photo, which should only be the latest people, I have to get more pictures made. I sent out 35 already. This is great.

Joanne, hope you are feeling better and can enjoy your time off.

Jenn, I too am wondering how to keep Emily's hands out of her mouth after her palate repair next month and then with the hand surgeries. I was told also that they will put her arms in splints so she cannot pull out the stitches in her mouth. I am not looking forward to that either.

Hope everyone is well. If I forgot anyone, I apologize. Have a good night.

Best wishes,

Janine Krebs ========================================================================= Date: Wed, 29 Apr 1998 22:10:45 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Yonstein <Yonstein@AOL.COM> Subject: Re: Cold Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Raquel:

You can cry and cry and cry anytime. If you would like I will give you my home number and you can really cry. As far as the cold goes, Emily had a cold before her cranial surgery also. It is standard procedure to go to the pediatrician the day or two days before any surgery for clearance. He will ok her for surgery as long as their is no congestion in her lungs. The anesthesiologist always has the final say before surgery any way, though.

This is the most nerve-wracking time that there is for you, other than actually handing her off to the doctors and waiting for the surgery to be over. If you are like me the anticipation is the worst. I felt the same way, though. To come so far and have a surgery cancelled would have been too much to take. Unfortunately, it does happen. We were lucky. Emily was fine and surgery went ahead.

However, if they felt there was congestion in her lungs, you wouldn't want them to go ahead with the surgery.

Try to relax and get some rest now.

Janine ========================================================================= Date: Wed, 29 Apr 1998 22:12:28 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Yonstein <Yonstein@AOL.COM> Subject: Re: Teeter's Page Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

I, too, get Nick's page. It was nice to get to see his pictures, though. Good night.

Janine ========================================================================= Date: Wed, 29 Apr 1998 22:09:57 -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: ROBIN L HILL <CARMENRAE@PRODIGY.NET> Subject: Teeter's Page MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit

We're also getting Nick's page with no pictures when we try to pull up Teeter's page. We're using Prodigy.

The Hills Newnan, Ga ========================================================================= Date: Wed, 29 Apr 1998 22:10:52 -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: cold MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

Hi Raquel,

You have all the right to be nervous about the surgery. I think that it is normal for all of us to get nervous when it is time for surgery. Some times when Felipe had surgery, days or week before he got cough or nose congestion. We immediately took him to see his pediatrician because when Felipe gets cold, we better check his ears to see if he got ear infection. If so the doctor would prescribe antibiotic. Then we called the surgeon's nurse to report that Felipe got cold. She said that it would be better to take Felipe for the pre op and then they would see if he would have the surgery on the next day or not. Felipe was fine and had the surgery. Like Janine said, if there is lungs congestion, better to cancel the surgery.

We hope Nicole's get better and you also get some rest. Have a good night, The Ize's. ========================================================================= Date: Wed, 29 Apr 1998 23:25:35 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Thornq <Thornq@AOL.COM> Subject: Re: Cold Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Raquel,

Andrew had a cold a week and a half before his plate removal. And it was in his chest as well. Do you by chance have a nebulizer? They work wonders. So does a steamy bathroom. The secretary is correct about the anaethesiologist needing to ok the surgery. The surgeons don't have much say and your pediatrician doesn't much matter either. It is the plastics nurse and anaethesia. I wouldn't much worry about it unless it gets in her chest. That is all they are really worried about. I have also been known to suction Andrew's nose to get all the bad stuff out. I can be so neurotic sometimes. We have only been turned down once and that was before a hand surgery.

Good luck and keep her away from strangers and cold, rainy weather.

Hope everything goes well.

Lynn ========================================================================= Date: Wed, 29 Apr 1998 23:34:04 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Thornq <Thornq@AOL.COM> Subject: Pictures Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Hello to all!

I have received pictures from Carmen Rae (twice), Jordan, Emily, Jonathan (early picture), Roxanne, and Amy. Those are my recent ones. I received a couple of others with the book request, but sorry can't remember those couple. Andrew's pictures will be going out this weekend or early next week. All the kids are wonderful and so precious. It looks like Emily really enjoys her Exersaucer. Andrew used to have a blast in it as well. This is so much fun and like Janine, I look forward to getting the mail everyday. Now isn't that a new experience for everyone.

Have a great night.

Lynn Thornquist ========================================================================= Date: Wed, 29 Apr 1998 22:39:09 -0600 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: baconsmith <bluenose@TELUSPLANET.NET> Subject: Re: Teeters Page Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

same here --- Pat in Calgary > >Don, I tried again and I still get Nicks Page no pictures etc. We are >using Bellsouth... > >Raquel... > > email to: bluenose@telusplanet.net IM: onlypeach shake and shake the ketchup bottle. none will come and then a lot'll ... unknown ========================================================================= Date: Thu, 30 Apr 1998 08:30:04 -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: Pictures MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit

Hi to everyone from the Younkins! We've been forced to sort of lurk here for a few weeks. We've just been through a new set of ear tubes for Sara and a round of colds/coughs for the entire family so I haven't been able to spend much time at the computer. Anyway, if it's not too late we'd love to be included in the picture exchange. I see the updated list to send Sara's picture to, and if anyone would like to send their pictures here, that would be GREAT! Send them to Sara Younkin PO Box 534 Lewisburg, PA 17837 (Please make sure to write the PO when you address the envelope--there is a rural Box 534 in town and they will deliver it to the wrong address if you don't have the PO on there---we learned that the hard wat!) ========================================================================= Date: Thu, 30 Apr 1998 09:25:06 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: Jenngram <Jenngram@AOL.COM> Subject: Re: Cold Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

well, I am glad SOME parts of this state is getting rain..we here on the west coast are not getting it..and do we ever need it.....its so dry my house is starting to crack..it needs a good moisturizer..

Anyway, Jordan had a cold when he had his surgery, but it was just a stuffy nose really..nothing in the lungs. And I did have to go to the pediatrician for the ok, but I think I would have had to do it regardless. I was SOOOO worried they would post-pone it..and after all the time spent mentally working up to it, I don't think Joe could have handled it. But we were given the ok..and off we went. I am sure Nicole will be fine, and if it gets pushed back...just think of all the things that could happen going in w/ a true, serious cold. It all happens for a reason, and works out in the long run.

Now, yesterday I got a call from our Dr.....seems he had a cancellation and since he'd post-poned Jordans surgery until 5-18..wanted to know if we wanted it on MONDAY!!!!!! yes, 4 days from now!!!!!!! Whellllllll..after a HUGE fight w/ my husband..b/c after all I AM the one who will be sitting in the waiting room, spending the night, and doing post-op care I said NO WAY, JOSE...Only 4 days to mentally prepare is not enough for me..I need a good 2 weeks!!! Anyway, I am sure hes all bent out of shape still, but oh well!!!!!

Hope everyone is well

Jenn(Tampa/St. Pete...still dry, but cloudy..COULD it maybe rain????????) ========================================================================= Date: Thu, 30 Apr 1998 09:25:06 -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: Don Sears <dsears@SCRS.STATE.SC.US> Subject: Re: Talking MIME-Version: 1.0 Content-Type: text/plain

> -----Original Message----- > From: Judy Amerman [SMTP:jamerman@UTI.COM] > Sent: Wednesday, April 29, 1998 5:39 PM > To: APERT@LISTSERV.AOL.COM > Subject: Talking > > [Don] snip > I have a question. I had Teeter's page in my favorites. Then I also > put > Nick's page in my favorites. Now when I pull up Teeter's page I get > Nick's > page with no pictures. Does anyone know why? But when I pull up > Nick's > page in favorites ,I do get his photos. > I guess when Don gets back and gets this page worked on I should be > ok. > > [Don] snip > > Ok. As my Japanese mother-in-law says, even a monkey falls out of the > tree once in a while. This was totally my fault, judy, and I'm bowing > down and admitting it before the whole family - while i was working on > Nick's Page, I accidentally overwrote Teeter's Page with an early > version of Nick's Page. The pictures didn't show up because they are > in the Amerman (not the main) directory. Mystery solved. The > situation has been corrected........ ---Don, back from our trip ========================================================================= Date: Thu, 30 Apr 1998 09:31:07 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: Jenngram <Jenngram@AOL.COM> Subject: Re: Cold Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

The bulb suction works wonders, Raquel, for getting all the drainage..as does sitting in the tub or bathroom floor while you shower, also a humidifier..Anything to keep things coming out of the nose so you can chase her w/ the buld sucker..Its a big joke w/ our family..whenever my dad gets a stuffy nose he always asks if he can borrow Jordans b/c I have tons of them all over the place..even if he hasn't got a cold. but the nose is plugged..we suction.....I'm just as neurotic as Lynn, but it works!!!

Hope Nicole is feeling better..and you too

Jenn ========================================================================= Date: Thu, 30 Apr 1998 10:02:52 -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: Christopher Kilner <Christopher.Kilner@USPTO.GOV> Subject: US Postage info (photos) MIME-Version: 1.0 Content-Type: text/plain

To prevent the return of photos in the picture exchange for "insufficient postage," I thought I would share what I learned at the Post Office this morning.

A regular letter (<1/2 ounce) from the US to Canada is 46 cents. A regular letter (<1/2 ounce) from the US to New Zealand is 60 cents.

If you don't want to bother with exact postage, two 32 cent stamps will get the letters delivered.

Chris ========================================================================= Date: Thu, 30 Apr 1998 11:36:27 -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: Leanne Maclean <lmaclean@NETCOM.CA> Subject: Hands MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii

Hi everyone,

You can tell I wasn't called out to subteach today as I am putting my 2 cents worth in about everything!

Jenn, Amy's hands were also done bilaterally. Her first was her thumbs done at 9 months. Since she wasn't used to having any thumbs to begin with she didn't really seem to be to inconvienced by the wrap/partial casts that went all the way up to her arm pits...she had always picked things up with her feet and transferred them to her hands to she continued to do that, trapping the things with her casts. She did enjoy having toys hanging off one of those tripod type things that she could bat at and have them move. Her brother would set pillows up around her and she would sit beside him...he pretended the tripod was an airplane cockpit, and she was content that he was 'playing' with her. Her casts stayed on for 3 1/2 weeks with no changing of dressings and then when they came off we had splints made that she wore at bedtime and at naps. She only had splints made for her thumbs- to keep as much space between the thumb and next finger while the grafts were healing.

Her next surgery was at 14 months and again she was very content. At that point she was learning how to walk and by the time the casts came off she not only had new pinkie fingers but was mobile too! She had to relearn her balance because she wasn't sporting her 'boxer' gloves anymore! We did have to hide the garbage can as she thought it was great fun to play in and I was worried about hygiene. Her last hand surgery was at 2 1/2 years. It was the one we cancelled once because she had a cold. All other surgeries she had her hands tied up in the air for 24 hours after surgery (lots of fun breastfeeding her with her hands tied up around my neck but we managed) but her last hand surgery they had to split bone and use toe skin grafts and well as the groin area ones so the surgeon wanted the hands raised for 48 hours. Thank goodness for Little Tikes vehicles. I was able to push her around endlessly in one with her hands tied to the roof!

Amy did find it difficult to get comfortable with the casts at night when she was sleeping and I found myself in numerous times in the night comforting her but during the day she was a happy camper. She (and I) ended up with light bruises on her forhead from bumping herself with them (she would get me in the night when she was waking up unsettled- the name boxer gloves she earned!). I got a few queer looks from people when we were out and about....and had one lady ask me if she broke both arms at once.

All the best! Leanne ========================================================================= Date: Thu, 30 Apr 1998 11:36:30 -0400 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Leanne Maclean <lmaclean@NETCOM.CA> Subject: Cold MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii

Raquel,

We had to cancel one hand surgery because of a cold. Amy was fine until the day before the surgery. We were flying to Toronto (a four hour flight) for the operation and I had to call and see whether or not to bring her. I called the surgeons office and had to wait for them to get him out of surgery to call me back and say no - it was better to be cautious. All this when I was suppose to be on my way to the airport with her!

As for being wound up and nervous about the craniofacial surgery that is a parent's right! I found myself crying last year prior to Amy's midface surgery and it made me realize how nervous I really was....it is not usually part of my character to find tears running down my face when I am driving down the road supposedly thinking about other things! I also experienced a lot of difficulty sleeping......it is such a relief that it is now over.

All the best -here's to a speedy recovery from the cold.

Leanne Alberta, Canada - where spring arrived two weeks ago and we are actually getting leaves on our trees! ========================================================================= Date: Thu, 30 Apr 1998 15:41:28 -0600 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Chad & Denise Graham <cgraham@INFOAVE.NET> Subject: mailing pictures MIME-version: 1.0 Content-type: text/plain; charset="us-ascii"

WHEW... I mailed out 34 letters today with pictures of Daryl inside. Look for them in your mailbox soon!ha...ha... I am looking foward to seeing all of these beatiful children!

Denise Graham ========================================================================= Date: Thu, 30 Apr 1998 19:13:17 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: Thornq <Thornq@AOL.COM> Subject: Re: mailing pictures Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Denise,

A mass mailing is what I will be doing soon. I am going to get Andrews pictures tonight and then choosing a good one (though of course they are all good). Then I will have them make 40 copies of that one, so look for all of mine in the next week or so. I was telling my family about the little description I'm sending with them and they all said they want one as well. So now I must add an extra 10. I am going to be exhausted. Talk to you all later. Can't wait to get more pictures.

Lynn Thornquist ========================================================================= Date: Thu, 30 Apr 1998 21:41:59 -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: Jack and Raquel <jara1@BELLSOUTH.NET> Subject: mailing pictures MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

Hi all,

Same here we will be sending a mass mailing of pictures in the next few days.....So Nicole will be arriving to your homes very soon....

See ya..

Raquel.. ========================================================================= Date: Thu, 30 Apr 1998 21:51:00 -0400 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jack and Raquel <jara1@BELLSOUTH.NET> Subject: Thank you.. MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

I want to thank all of you for your words of encouragement regarding Nicole's cold and upcoming surgery. You all are a great bunch of people, I am so glad that we are part of this wonderful family. I feel like I know each and every one of you individually.

Mike, I want to especially thank you for your words, they hit me straight in the heart. I want you to know that I too am a christian, born and raised in a christian home. But that doesn't mean that we at times can't get shakey and need someone else to pull you back and make you realize what you already knew. That no matter what happens God is always there through thick and thin and will never give you more than you can handle. I thank you very much for your words. What really got to me was that you quoted the paragraph that I sent to the Kilners, like I said before it sometimes will take someone else to shake you out of it. I feel much better today even about Nicki's cold if she gets better and is able to have her surgery then great, if not then there will be another day and we must not question why, just accept and move on.

May you all have a great night....

Raquel Miller still in rainy south Florida... ========================================================================= Date: Thu, 30 Apr 1998 19:59:34 -0600 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Brett and Heidee Lindsey <blhlfam@JUNO.COM> Subject: Re: walking

Hi all-

Thanks for all of the warm welcomes. This sight already felt like home even when I was lurking! I have a question about walking. I know that all kids walk at different times, but Josh has never had the desire to bear weight on his legs. We had to trick him ( with the help of a great PT) to start bearing weight. Even as an infant he would not do it. Have any of you dealt with this? I would appreciate any help or suggestions. And sometimes, just knowing that others have gone through this circumstance, I feel better.

Thanks!

Heidee

_____________________________________________________________________ You don't need to buy Internet access to use free Internet e-mail. Get completely free e-mail from Juno at http://www.juno.com Or call Juno at (800) 654-JUNO [654-5866] ========================================================================= Date: Thu, 30 Apr 1998 20:37:52 +0100 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Lori Hickman <hickman@WHIDBEY.COM> Subject: development of a resource Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

From: Lori Hickman P.O. Box 601 Langley, WA 98260 email: hickman@whidbey.com

Dear Parent:

My name is Lori Hickman and I am a Speech-Language Pathologist. I am currently working on a project related to the experience of parenting a child with challenges/disabilities.

I have worked in special education for 15 years. Over the years, I have found that much of the pain and frustration that many families of children with special needs face is caused by the lack of understanding, support and acceptance they receive from other family members, professionals working with their child, friends, and the community at large. It is my belief that the shortcomings of those of us who do not live with children that have special needs are often the result of a lack of any real understanding about the life-changing experience of living with special needs children.

l am hoping to develop a resource for professionals, extended family members, and friends of parents with special needs children that will allow them to experience what the challenges and the joys of raising a child with special needs can be through the words of parents who live this experience every day.

If you are the parent of a child with special needs, please review the questions below. If you would like to participate in the development of this resource, please answer the questions below and send them to me (at the mailing address given above or to the email address above) along with your name, address and phone number. I will contact you for written permission if I use your responses in any published form. Any information you share will remain confidential. Feel free to share this letter and questions with other parents.

Thank you.

Sincerely,

Lori Hickman, M.S., CCC-SLP

Skip any questions that do not apply to you or that you are uncomfortable answering.

Please give me as many real-life examples as possible in your responses.

1. What is your child's current diagnosis?

2. Tell me about your family; (who lives at your home, what are your children's ages?, what are the parent's ages?)

3. Describe a typical day at your house; i.e., what do you/your child/others in the home do from the time you wake up until you go to bed at night?

4. When did you find out that your child had challenges/disability(s)? Who gave you this information? How was it shared?

5. What was your reaction to #4 above?

6. Describe the response of others when you told them about your child's diagnosis/disability/challenges.

7. The process of coming to terms with the knowledge that your child will have special needs and challenges in life takes time and can be very difficult. Please describe this process as it applies to your and your child.

8. What are the most difficult aspects of your child's special challenges? a. for your child b. for you, personally c. for your family

9. In her book Changed by a Child, Barbara Gill provides insights into the positive growth that comes with supporting and advocating for a child with special needs. What are the joys/growth you have experienced because your child's special challenges?

10. What type of support system have you developed for you and your child? (extended family, friends, respite care, etc.)

11. Describe the participation/support of the following as you have experienced it (positive, negative, or neutral impact) a. educational system b. family c. friends d. community e. church (if applicable) f. other

12. What are your dreams for your child?

13. What are your major concerns regarding your child's future?

14. What do you anticipate that your child will be doing as an adult?

15. What/who has been the most helpful for your and your child?

16. What/who has been the least helpful?

17. What are your child's greatest challenges?

18. What are your child's greatest strengths?

19. If you could provide information to others about living the life of a parent with a child with challenges, what would you say to:

a. extended family b. educators c. physicians/medical personnel d. friends e. spouses f. siblings g. community h. parents of newly diagnosed children with challenges i. other

20. Other comments

Name address telephone # email address

send to: Lori Hickman P.O. Box 601 Langley, WA 98260