========================================================================= Date: Mon, 1 Jun 1998 00:38:21 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: "Christina R. Mathis" <ChMathis@AOL.COM> Subject: Just wondering Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Don: This is Christina Mathis, Zoey's Mom and about two months ago, I sent you guys a picture and Zoey's story. I was just wondering if ya'll have received it and if Teeter's page had been updated. I actually haven't been into Teeter's pages for about 2 weeks, so Zoey might be there. I was just curious; if you didn't received my letter, then I'll send another one. Thanks! Christina ChMathis@aol.com ========================================================================= Date: Mon, 1 Jun 1998 10:41:49 -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: Mitchell's home! (and I am too!) Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

Dear Resa. So glad that this is behind you. It is one of the toughest things we do, and these cranial surgeries are bloody scary to start with (at least that's what I found and I hope we never have to do that again).

The swelling really is incredible. A person wonders how their little faces and skin can stretch that much. I described Evajessie as a Charlie Brown face when she was a few days post op. But thankfully, that disappears soon too.

I have learned much more about the human body >than I ever wanted to know

Me, too!!

Gee, our recovery wasn't that bad, but then EvaJessie was four when she had this type of surgery. And they kept her on a morphine drip for three days, so she didn't appear to have much pain. I felt that it was managed really well.

But the swelling was something else.

REcovery after we got home was fairly quick. Hope the same goes for Mitchell. Thanks for hte update.

Pat and EvaJessie 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, 1 Jun 1998 10:41:47 -0600 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: baconsmith <bluenose@TELUSPLANET.NET> Subject: Photo exchange Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

Good morning all. I read a post a while back that Leanne is finally sending out Amy's pictures. I wanted to say, Leanne, that I should hope so!! After all, wasn't it you who started all this? :-)

I've sent EvaJessie's pic to everyone except a few people who joined late -- Carol from Australia, I need your address. Anyone else who hasn't received, just let me know. I'm pretty sure we got everyone.

So far we have recieved Emily (Janine), Nick A., Quentin, Nicole (Raquel), Carmen Rae, Jordan, Daryl, MarMar and Sarah, Ceci, Brenna, Zoey, Sarah LeCara, Amy (Ann), Jacob, Seth, Roxy, Collin, Jonathan, Morgan, Nate, Courtney, Andrew (Lynn, you sent this with the Upton book). I just love getting the mail. Thank you all.

I look forward to opening the rest of the envelopes as they arrive.

Hope those nightmares settle down and our little surgery candidates are going to be all healthy and ready for their big days. Not to forget the mommies and daddies who will also be ready for their big days. Just remember, take a deep breath, let it out slowly and let those nerves relax as you exhale.

EvaJessie and I went to the plastic clinic on Friday to meet the doc who will do the injections for her tissue expansion. We walked thru the area, and looked at the toys and played for a while. We were also lucky enough to meet a little girl same age who was having expansions done on her legs. She let EvaJessie feel her balloon and the hard port. But EvaJessie was mostly interested in playing. I think it was good tho that EvaJessie got to associate nice things with the plastics clinic -- lots of toys and a little girl who didn't seem at all apprehensive about the injection she was about to get. I'm sure that relaxed feeling was communicated unspoken to EvaJessie. Or is that just my mommy's heart hoping?

Bye for now. Pat and EvaJessie 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, 1 Jun 1998 14:04:18 -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: "Pulido, Laura" <PulidoL@OR.CSMC.EDU> Subject: Picture Exchange MIME-Version: 1.0 Content-Type: text/plain

I am in the process of getting Martha's picture re-printed a bunch of times. I waited to get a picture we really liked and to find a place where I could get a good price for re-prints. Savon has coupons and the price is very reasonable so Martha's picture will go out very soon. I have about 49 people on the exchange. Is this right?

Here's something that happened to us last week: Martha (2 years 4 months old with Apert Syndrome) loves dogs but we don't have one of our own. She heard the neighbor's dog barking so she's imitating the barking sound. I asked her if she wanted to walk across the street to look at the doggy. She did. We're looking at the dog when the neighbor's kid (he's about 7 years old) asked me what was wrong with Martha. I thought he was referring to some spaghetti sauce on her face, so I told him "She just finished eating so I have to clean her face. He says to me "No I mean, why does she look like a zombie?" I thought to myself, you little a--hole and said to him "Now that's not a nice thing to say. What if I told you you look like an little alien." Then we non-chalantly walked away and went back home. Kids I tell you!

Laura Pulido ========================================================================= Date: Mon, 1 Jun 1998 18:34:24 -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: "D. Jefferson" <djeff@MIDWEST.NET> Subject: Re: New Family: MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit

Dear Friends:

I spoke with Stephanie Tingley today. They are doing fine. They have decided to go with the group in Indiana for insurance reasons. She said that a family from Texas who had an 18 month old son had called last week and she was so tired that she forgot to write down his name. I told her that I would post a note and find out who called for her. So would the family from Texas please e-mail me and I will give her the information.

She and her family are going to try to meet our Apert group at Robin Hood Woods on July 24th or 25th. I am looking forward to the get together.

Thanks, Dori Dori A. Jefferson djeff@midwest.net ========================================================================= Date: Mon, 1 Jun 1998 19:54:36 +0000 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "J. G. Lindamood" <chanan8@JUNO.COM> Subject: See you later.

Hello Family,

Due to circumstances beyond my control, I am going to need to part ways for a while. Don't worry, I will be back. I have not forgotten the picture exchange and will be sending my family photo out soon.

My heart will keep you close to mind and I will pray for each of you daily. My personal e-mail and home address are floating around out there, if you would like to contact me, please feel free.

I will officially sign off in a couple of days. Until then, see you in a couple of months.

Joanne, in Ohio The ever patient, Clarence and Coal too! ========================================================================= Date: Mon, 1 Jun 1998 20:08:39 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: "<George Siebert>" <GSieb91515@AOL.COM> Subject: Re: New Family: Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Dori-

My husband George talked to Stephanie on the phone. I don't know what information she needed but the address is :

The Sieberts George, Brenda, Melissa and Jonathan 5226 Walnut Peak Ct. Kingwood, Tx 77345

(281) 360-8573 GSieb91515@aol.com

Please let me know if there is anything else they may need.

Brenda Houston ========================================================================= Date: Mon, 1 Jun 1998 20:13:23 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "<George Siebert>" <GSieb91515@AOL.COM> Subject: Re: Photo exchange Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Pat--

We unfortunately have not received EvaJessie's photo. We should be on the list from early on. Let us know if you need our address. Our mail is pretty slow here so maybe it just hasn't arrived yet. Let us know how the tissue expanders progress.

Brenda Siebert Houston ========================================================================= Date: Mon, 1 Jun 1998 20:15:13 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: "<George Siebert>" <GSieb91515@AOL.COM> Subject: Re: See you later. Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Joanne,

We are so sorry to hear you won't be with us for awhile. We hope everything is okay and that you are enjoying your busy job. We look forward to hearing from you in a few months. Until then God Bless and keep your chin up.

Brenda Houston ========================================================================= Date: Mon, 1 Jun 1998 19:15:29 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Judy Amerman <jamerman@UTI.COM> Subject: Lake Shelbyville MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit

Hi all, Just to let you know, Laurie Bailey e-mailed me earlier to let me know that robinhood woods is booked up as far as the cottages go. I'm sure the campgroung isn't. So If anyone else is thinking of joining us, Laurie wound up missing Robindhood and is staying instead at the Shelby Inn. So Laurie when you read this, could you share that phone number? The shelby inn is 3 miles from where myself and Dori Jefferson will be staying. Don? Did you have your happy meal today? I know that Cat got her Zips but I thought maybe you were addicted to them by now. Judy ========================================================================= Date: Mon, 1 Jun 1998 21:46:42 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: Lynn Thornquist <Thornq@AOL.COM> Subject: Re: Mitchell's home! (and I am too!) Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Resa,

Glad to hear that everything went well with Mitchell's surgery. Like you, I also requested a bed instead of a crib for Andrew's frontal advancement surgery. Unfortunately, for his post exterior release, the nurses told me that they were not able to put us in a bed, but they came up with a much bigger crib (adult size), but let me tell you, it was definatley not big enough for me to stretch out. So for two nights, we slept in a large size crib for two. It was definatley a sight to be had. Not to mention, the nurse put up the side of the crib and when I needed to get out, I had to buzz them. Now that was amusing when I answered them asking to be let out of Andrew's crib. I heard them all laughing. I hope you all got a kick out of that too.

Brenda, I asked if I could take Andrew into the pull-out bed, but they said no because it was against policy. Obviously, my sleep and my son's comfort was against policy too. But I can somewhat see, they don't want to be sued if Andrew falls out or something else like that happens.

Well that is my two cents. Again, I'm really glad that Mitchell is doing well.

Lynn ========================================================================= Date: Mon, 1 Jun 1998 21:55:45 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: Lynn Thornquist <Thornq@AOL.COM> Subject: Re: NIGHTMARES/beanies Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Denise,

Andrew had those same nightmares, I know what you are going through. As soon as I would lay down with him, he would also drift off to sleep. What you said about how you try to console Daryl, sounds extremely familiar. Even though it has been many months since a major surgery, I can remember those times vividly. Don't worry, it will all end sometime soon, you just need to be patient. But it truly sounds like Daryl is having "night terrors". Don't you just hate this part of the surgery? I always thought this was the worst time of all. I always felt so bad for him, even more so than the swelling and bandages. These little sweeties have to endure so much and my heart breaks everytime, Andrew falls asleep in my arms and I know he feels safe. I am so glad that mommy can be there for him.

Thats enough of my ramblin' for today. Things will get better Denise, just wait it out.

Lynn ========================================================================= Date: Mon, 1 Jun 1998 22:04:02 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: Lynn Thornquist <Thornq@AOL.COM> Subject: Re: See you later. Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Joanne,

I'm truly sorry to hear that you will be leaving us for awhile. I hope it is not for long, but we will anticipate your return. You have been alot of help and been a ray of sunshine with your confidence and funny stories. I will miss you tremendously. I do hope that the reason you have to part for awhile is not tragic or such. I will also be thinking of you daily, and I would love to correspond with you still, if you do not mind. I have your address in my file box. Good luck with whatever you must leave us for.

Lynn Thornquist ========================================================================= Date: Mon, 1 Jun 1998 23:50:59 -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: Leanne Maclean <lmaclean@NETCOM.CA> Subject: pictures/surgery MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii

Hi all,

Pat, I had to grin when I read your message...a little bit cheeky, aren't we! Well I hope the wait on Amy's picture is worthwhile!

I had Amy in getting her presurgery check up for the surgery on her right thumb. We leave for Toronto on Wednesday. She has her annual craniofacial team assessment Thursday and Friday. Hand surgery on Monday the 11th.

Well my little trooper screamed the place down when she had to have her blood test done. I told her it would be like a pinch but she has had too many pokes and wasn't taking any chances. She did admit when it was all over that it didn't really hurt (it's the needle/I.V. idea that scares her). I also commented to her that she probably had everyone else in the waiting room scared. When we left she had to stop and check whoses turn it was next and then promptly asked this older gentlemen if he thought he was going to cry when it was his turn! He gave her a smile and confided that he certainly hoped not.

I've already inquired about presedatives on operation day (for her, not me!). I have bought a scrapbook photo album and have good intentions of getting everyones pictures in it while Amy is in surgery....so hopefully if I cart it all the way there with me it will at least get started!

Hope everyone has a good week,

Leanne ========================================================================= Date: Tue, 2 Jun 1998 20:27:07 +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: Can you help a desperate guy? Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

Hi Don

Sorry to upset you but Zip the Cat is the only one that Amy does have so I'm not sending you that!!! They haven't yet started coming with McDonalds (thank goodness!), she was given it by a visiting American.

Good luck with the hunt. Ann NZ

At 12:58 PM 29/05/98 -0400, you wrote: >Cathie has all of the McDonald's Beeny Babies except Zip the Cat (#10) >which is of course the ONE she really wanted - she is a cat fanatic. >This is all Judy Amerman's fault for getting her hooked on collecting >these things. ANYway, if any of you HAPPEN to be able to get this >particular one, I would be ever in your debt. She wants three of them >(I don't know why) and I'll be happy to reimburse you the complete cost >of getting them, and getting them to me. Please do not mail any of the >food that comes with them, especially the drinks. I have spent what >seems like thousands of hours and eaten hundreds of happy meals trying >to complete this collection. > >Thanks to all, Don > > ========================================================================= Date: Tue, 2 Jun 1998 20:38:16 +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: Mitchell's home! (and I am too!) Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

>enough for me to stretch out. So for two nights, we slept in a large size >crib for two. It was definatley a sight to be had. Not to mention, the nurse >put up the side of the crib and when I needed to get out, I had to buzz them.

>against policy too. But I can somewhat see, they don't want to be sued if >Andrew falls out or something else like that happens.

My 2c worth. The last thing we want to happen is for our child to fall out of any bed no matter how close to the floor it is, and if you are like me you don't want them too close to the floor that everybody walks on anyway!

The compromise that I manage whenever I can is for Amy to be in a bed with a barrier on the side that the nurse can get at her through, and me in a bed on the other side, usually jammed against the wall so not easy to get out (but I'm not complaining). Both beds are raised to the same height so we can migrate into each other's beds as the need arises, but she has me on one side and a barrier on the other. Best night's sleep I ever had in hospital!

The difficulty arises when the nurse needs to get to the arm closest to me, but we've coped with that by the nurse lifting Amy's bed back onto its wheels, pushing the bed out, nurse gets in between and attends to Amy, then reverse the action and we go back to sleep again. Mum barely has to raise her head.

Unfortunately none of this happened when we had our longest and most traumatic stays in hospital. I've only managed that on little stays! We live and learn.

Cheers, Ann NZ ========================================================================= Date: Tue, 2 Jun 1998 08:09:35 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: Jennifer Graham <Jenngram@AOL.COM> Subject: Re: See you later. Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Joanne,

We will miss you, and will look forward to your return. Please keep in touch..Have a great summer

Jenn(Tampa/St. Pete) ========================================================================= Date: Tue, 2 Jun 1998 08:39:08 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: Jenny Brown <Firefli007@AOL.COM> Subject: hello!!! - Joining the serv Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Hello everyone,

My name is Jenny Brown. I live in Savannah, Georgia (hot and humid) and was born with Apert's. 11-11-66!!! The first few years I had all of the normal surgeries, but not a mid face advancement. It is wonderful to meet other families who have the same challenges/ worries/ triumphs and victories. You all are strong and loving people with a lot of heart.. I first met the Internet Apert's family thru Teeter's Page and have most recently joined the Listserv and been in contact with Christine ( thanks by the way - i keep my bracelet on me all the time!)

A little bit more about me - single no kids.. I'm a social worker working on my Master's Degree in Counseling - I work with Senior Citizens in a retirement community - LOVE my job. Am in the middle of training for a promotion at work and studying for finals at school so life is busy! I have a great and supportive family, a wonderful group of friends from my church where by the way i play trumpet and sing with our folk music ministry.

The secret to my success : my parents giving me every chance and pushing me through every trial and challenge. Surrounding myself with loving and supportive people and NEVER giving up, It is that fierce determination that gives the get up and go!

You are all in my thoughts and prayers...It is so good not be the Lone ranger!!!!!! How do I get on the picture exchange? Hope you guys have a great rest of the week. Keeping cool in the shade in Hot Savannah... Jenny ========================================================================= Date: Tue, 2 Jun 1998 12:08:01 -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: See you later Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

Joanne,

Hope everything is ok and that you will return real soon. We will be thinking of you and looking forward to receiving your picture.

Welcome to all of the new people and good luck to all upcomming surgeries. Also hoping that everyone is healing nicely who have already had their surgeries recently.

I do have a question. Billy had his surgery on the 22nd of May and is doing great but something puzzles me about the changing of the bandages. Billy has had to go back to the hospital 4 times including today to have the bandages changed. I know that it is important to check for infection and blood flow but I somehow thought that we would be changing them. I am not complaining because his doctor is the one who always does the changing and it makes me feel good that that he is taking such good care of him. It takes two and a half hours to get to the hospital and that part is the the killer . Is this the way it is done?

As for his fingers they are coming along really nicely, and his is doing pretty good playing and getting around even with the bandages.

Bye for now, Karen(PA) ========================================================================= Date: Tue, 2 Jun 1998 11:18:03 -0700 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Scott Pengelly <scottp@EUGENE.COM> Comments: To: AOL User <MHTeach102@AOL.COM> Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

Welcome, Jenny:

Thanks for joining us and thank you for your introduction about who you are and about what is important in your world.

All the best, Scott Pengelly Eugene, Oregon ========================================================================= Date: Tue, 2 Jun 1998 11:30:45 -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: Miss you: Scott Comments: To: AOL User <MHTeach102@AOL.COM> Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

>Date: Tue, 02 Jun 1998 11:29:47 -0700 >To: J._G._Lindamood >From: Scott Pengelly <scottp@eugene.com> >Subject: Miss you: Scott > > >Hello, Joanne: > >Thanks for your email letter. >Sorry to hear that you'll be >out-of-electronic-touch fow awhile. > >I sure appreciate your support and >your spiritual connection, especially >during the horror of these troubled >days here. Your service via the >spirit has helped me. >Thank you so much. > >all the best, >Scott ========================================================================= Date: Tue, 2 Jun 1998 14:52:56 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: Jennifer Graham <Jenngram@AOL.COM> Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Welcome to the group, Jenny. My son in almost 9 mos. old and has had the first craniofacial surgery and one hand surgery on thumbs and pinkies of the right hand. I know you'll be an asset to this group, as all of our adult members w/ Apert are. they give us such hope for the future...as well as some clues on how to treat our kids. Seems like your parents did a great job, I hope we do as well with Jordan. I guess his determination and stubborness will prove to be a big help to him as he grows.

Good luck on finals..YUCK!!!!!

Jennifer Graham(Tampa/St. Pete) ========================================================================= Date: Tue, 2 Jun 1998 17:24:34 +0000 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "J. G. Lindamood" <chanan8@JUNO.COM> Subject: Hello Jenny!

Hello Jenny and welcome to the family!

My name is Joanne. You are three months older than I am! And I have Apert's! I would love to chat with you to get to know you, but you are coming when I am leaving. Nothing personal, mind you. The other day I sent a message about my departure and said "see you later" to everyone. I have some things that will need a lot of my attention and concentration this summer.

I also work with senior citizens in a reitrement community. I am a activity coordinator and am a final away from being Ceritfied in the State of Ohio as an AC.

I gave permission to the family at large to contact me via my personal address. Please feel free to do the same: chanan8@juno.com I would love to get to know you better.

There is a list of names floating around of those who chose to be a part of the picture exchange. All you need to do is send your photo to those on the list and you will get a mailbox full of the cutest pictures in return! I am having difficulty getting a photo of my family (me and two birds, Clarence and Coal.) As soon as I do, mine will be sent out. (other than the birds, I am single, no kids.)

All the best Jenny! Joanne ========================================================================= Date: Tue, 2 Jun 1998 18:35:04 -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: See you later MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

Joanne,

We'll miss you, hope you'll return very soon. Have a great summer time!

The Ize's from Oklahoma. ========================================================================= Date: Tue, 2 Jun 1998 18:35:58 -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: hello Jenny MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

Hi Jenny, welcome to the list. We have twin boys( 2 1/2 years old) Felipe and Rafael. Felipe was born with Apert's. I am sure you will love this place. Hope to hear from you soon!!! Please give us your address so we'll send to you Felipe's and Rafael's picture.

Welcome again, The Ize's from Oklahoma.

Pictures exchange addresses:

1. Rachel Fletcher 3900 Vernon Memphis, Tn 38122

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

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

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

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

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

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

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

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

10. Joanne Lindamood 1533 Regent Avenue Springfield, OH 45503

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

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

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

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

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

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

17. Dori Jefferson 83 Pine Lane Murphysboro, IL 62901

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

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

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

21. Lynn Thornquist 4 Taylor Road Holliston, MA 01746

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

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

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

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

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

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

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

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

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

31. LeCara Family 8907 Gayguin Houston Texas 77088

32. Foster Family 1335 Sanderson Ave Scranton, PA 18509

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

34. Robyn Jonston PO Box 25633 Eugene, OR 97402

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

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

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

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

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

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

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

42. Sara Younkin PO Box 534 Lewisburg, PA 17837

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

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

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

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

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

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

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

50. Carol Hamzsak 2 Woomera Street RYE SIC 3941 Australia

51. Shannon & Lori Parks (Levi) 19270 Coal Valley St. Marion, Il 63959

We have a total of 51 addresses. If we missed someone, please let us know. Thanks, The Ize Family. ========================================================================= Date: Tue, 2 Jun 1998 17:36:35 -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: Emily (Janine) Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

Janine, be sure to keep Emily comfy with Tylenol or whatever the doctor said. We found with Evajessie's cleft palate surgery, that we kept her on regular doses of baby tylenol for at least three days -- whether she needed it or not -- that way we stayed ahead of the pain. Also, if you give it to Emily about 15 - 20 minutes before feeding her, ti will help handle the pain so that she can eat.

Best with her recovery, it ain't easy, but you will get thru it. Poor pumpkin, it's so hard for them to be in pain and not really understand what's happening. Be strong, MOM. You're doing fine.

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: Tue, 2 Jun 1998 17:25:58 -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: More about Tessier clefts Part 2 Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

>Question, has the clef effected EvaJessie's vision out of the left eye? >This must be very rare. I have some information on other cranial syndromes >but found nothing that seem to match with EvaJessie. Cleft pallet and lips >was the closet I got.

Hi everyone, I got this question posed to me, and thought some others may be interested in a bit more information. You never know when you'll run into someone else just like us (I have met three people via my internet connections, including a woman who was born with a bilateral Tessier 4 cleft -- now married with a successful career and four grown children!)

Clefting as you all probably know occurs about 1 in 700 births. However, it has many different expressions of greater or lesser complexity.

The Tessier classification assigns numbers to clefts depending on their location. I have the 1976 article off PubMed that Dr. Paul Tessier published outlining the classification.

EvaJessie's is a 4 or a 5 meaning it runs alongside her nose and all the way to her eye. The incidence of this type of Tessier facial cleft, according to some of the literature, is about 1 in 100,000. I do not know if EvaJessie's cleft is genetic (I doubt) or environmental (pesticides? not wearing a purple dress on Tuesdays? ...) or just a lucky break ... hmmm

At around 7ish weeks gestation, the face is forming. Something caused the face not to fuse together. Her vision is affected. Both eyes are far-sighted, but the muscles of the left eye were compromised by the cleft, and her vision is far worse in the left eye. But will she let me patch? No. We still argue and tussle over that one.

Her palate was also cleft at birth -- but it was sort of a diagonal cleft with most of the muscle on one side. Her surgeon did a Furrlow type repair, and the results for EvaJessie have been excellent. Her speech is great, she gets good closure at the back of the throat and has no nasality at all. Fortunately, she never had any feeding issues. I pumped breast milk for her until her soft tissue surgery at 3.5 months.

During her orbital osteotomy last summer, the surgeon advanced her orbit by about a half inch and raised it up as much as he could at that time (cuz he didn't have enough soft tissue to raise it any higher). He also moved it out toward the side of her face more, the result being that her glasses fit so much better and of course her bony symmetry was much improved.

EvaJessie was the first patient in BC to have resorbable plates used in this surgery. The hospital there was the fourth in Canada to bring these plates into use. (We don't have very many craniofacial centers here.) I helped our doc get these plates going. I guess I just like to stir the stew once in a while.

This year she will be one of the youngest kids to undergo tissue expansion on the face. We are being quite aggressive in our approach to reconstruction. But hey, if you aren't living on the edge, you're taking up too much space!

If anyone ever finds another little one like EvaJessie or a big person even, I'd love to know.

I started hanging out on the Apert list when Don put me on in the first batch of subscribers. The complexity and time frame of EvaJessie's reconstruction is in some ways similar to your little fellas with Apert Syndrome. So that's how I got here on the Apert list in the first place. We fall into that Other category.

Well, thanks for listening. 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: Tue, 2 Jun 1998 19:52:05 -0400 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: ROBIN L HILL <CARMENRAE@PRODIGY.NET> Subject: Re: hello!!! - Joining the serv MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit

Hello and welcome Jenny! We are the Hills (Mike, Robin, and Carmen Rae) Carmen Rae was born with Apert Syndrome January 18, 1998. It is nice to meet a fellow Georgian in our group. We live in Newnan, Georgia (30 miles southwest of Atlanta). We know you will love this group, it is full of wonderful, supportive people. All you have to do to join the picture exchange is post your address to the listserver. Hope to get to know you through the server and hopefully in person some day! You are the closest to us so far!!!! WELCOME!!

---------- > From: Jenny Brown <Firefli007@AOL.COM> > To: APERT@LISTSERV.AOL.COM > Subject: hello!!! - Joining the serv > Date: Tuesday, June 02, 1998 8:39 AM > > Hello everyone, > > My name is Jenny Brown. I live in Savannah, Georgia (hot and humid) and was > born with Apert's. 11-11-66!!! The first few years I had all of the normal > surgeries, but not a mid face advancement. It is wonderful to meet other > families who have the same challenges/ worries/ triumphs and victories. You > all are strong and loving people with a lot of heart.. I first met the > Internet Apert's family thru Teeter's Page and have most recently joined the > Listserv and been in contact with Christine ( thanks by the way - i keep my > bracelet on me all the time!) > > A little bit more about me - single no kids.. I'm a social worker working on > my Master's Degree in Counseling - I work with Senior Citizens in a > retirement community - LOVE my job. Am in the middle of training for a > promotion at work and studying for finals at school so life is busy! I have a > great and supportive family, a wonderful group of friends from my church where > by the way i play trumpet and sing with our folk music ministry. > > The secret to my success : my parents giving me every chance and pushing me > through every trial and challenge. Surrounding myself with loving and > supportive people and NEVER giving up, It is that fierce determination that > gives the get up and go! > > You are all in my thoughts and prayers...It is so good not be the Lone > ranger!!!!!! > How do I get on the picture exchange? > Hope you guys have a great rest of the week. > Keeping cool in the shade in Hot Savannah... > Jenny ========================================================================= Date: Tue, 2 Jun 1998 20:45:14 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: "<George Siebert>" <GSieb91515@AOL.COM> Subject: Re: hello!!! - Joining the serv Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Jenny,

What an uplifting introduction. We are so glad to have you with us. You have certainly accomplished a great bit and with such a positive attitude. Playin the trumpet is truly amazing. How do you bend your fingers? We are the Sieberts in Houston, Tx. I have a son (Jonathan) born with Aperts 18 mos. ago. I also have an 8 yr. old daughter (soon to be 9). We wish you continued success and look forward to hearing more from you. Your introduction brightened my day.

Brenda Siebert ========================================================================= Date: Wed, 3 Jun 1998 14:02:44 +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: Dressing changes (was See you later) Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

Hi Karen

We used to travel to the hospital for dressing changes (20 minutes away). Initially it was ignorance (I didn't realise I had a choice) but also because I had lost my confidence with such things after 6 weeks in hospital, and I figured the nurses knew what they were doing. Later we had district nurses (home visiting) doing the dressing changes and I was not happy about that because they knew more about washing oldies than changing dressings on delicate surgical sites - also the hygiene procedure of one wasn't up to my liking! As the tissue healed Howard and I did the changes.

Ours was choice. Maybe your doctor just hasn't got around to asking what YOU want to do?

Regards, Ann NZ

>I do have a question. Billy had his surgery on the 22nd of May and is doing >great but something puzzles me about the changing of the bandages. Billy has >had to go back to the hospital 4 times including today to have the bandages >changed. I know that it is important to check for infection and blood flow >but I somehow thought that we would be changing them. I am not complaining >because his doctor is the one who always does the changing and it makes me >feel good that that he is taking such good care of him. It takes two and a >half hours to get to the hospital and that part is the the killer . Is this >the way it is done? > >As for his fingers they are coming along really nicely, and his is doing >pretty good playing and getting around even with the bandages. > >Bye for now, >Karen(PA) > > ========================================================================= Date: Wed, 3 Jun 1998 09:09:52 -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: Colleen Jones <coljones@PTDPROLOG.NET> Subject: Bandage changes (See you Later) MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit

Karen, When Jacob had his hand surgeries at Geisinger we went after the first week home to have his bandages changed and then again a week later. After that we felt comfortable enough to change the bandages ourselves every two days. He still had to get them checked every week for about a month but it did make things easier when we did it. Just be sure to ask the doc if you can and get all the materials needed right from the doctors. Hope all is going well in your area of PA. Did you get the bad storms on Sunday and Tuesday. Most of them missed us. Take Care, Colleen and gang ========================================================================= Date: Wed, 3 Jun 1998 08:56:24 -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: Ize <ize@TACOMA.CEATLABS.OKSTATE.EDU> Subject: Re: Bandages changes MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

When Felipe had hands surgeries, the doctor wanted to keep the bandages on for two weeks. The reason is because the skin graft have to attach on the fingers, if the bandages are changed before, there is a chance to loose it. The doctor was cheking to see if the tip of the fingers were pink once a week. After that the doctor removed all the bandages and put a new one. Then I had to change the bandages twice a day, (every day) for one month. It was a challenge to me, because I never thought that I would be capable to put even a small bandage in someone's cut. Thank God that I did a wonderful job and the doctor noticed that and gave me grade A and said that I do this better than himself and even said that I should do nurse school!!! When I was changing Felipe's bandages, I was always carefull not to let the fingers to glue back together. So we are very glad with the results. Felipe got all fingers on both hands and he is exploring everything!!!!!

Best wishes to you all, The Ize's. ========================================================================= Date: Wed, 3 Jun 1998 10:21:46 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Carbide Tech <ruth@CARBIDETECH.COM> Subject: Kris and Miss ViVi MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit

Hello everyone!

I am sorry I have not kept you informed on our progress! But I have been so busy trying to get our Insurance Company to OK this surgery. We are totally frustrated! And that is putting it mildy! Here it is, Wednesday, The day before surgery and her surgery has not been OK'd. I am about to scream! Oh well, at least its not the day of the surgery that they decide to tell they are not paying, Like last year, when they did that to me.

They were waiting on medical necessity, on the procedure that was going to be done, etc. from a Dr. that was going to perform the eye part of the surgery, well, this DR. can not call in the procedure because he needs to see Kris first, right? Well, I cannot take Kris to see him because I need a referral to see him. This same insurance will not OK a referral to see him, SO HOW ARE WE SUPPOSED TO SEE HIM, RIGHT? It just goes round and round.

Anyway, Kris surgery is tomorrow, I will appreciate your prayers. Her sinus infection has cleared up and her culture of the nose came back - negative. YYESSSSSS!

About Miss Vivi-- We are so excited! I am waiting on an answer from a hospital in San Francisco to see if they will accept her. They had some questions and Claudia, her sister, has answered most of them and I have forwarded them on.

The California Consulate has - GET AHOLD OF THIS!- agreed to sponsor her monetarily (SP?)- He told me--"You take care of the hospital and the doctors. and I will take care of her in whatever she needs- money-wise"

The Houston Consulate has agreed to "fork-over" the plane tickets. She is 99% sure that she can get them.. No charge to the family.

I know that the Ronald McDonald house will take her in- I spoke to the director here in Houston and she did not think there would be a problem.

Our church family and friends have all told me whenever you are ready to receive donations for the family, JUST SAY WHEN.

A church in Austin, Texas (where my bro-in-law is the Pastor) is having a huge rummage sale for this young lady. All proceeds to be forwarded!

And my precious daughter, Katie, (10 yrs old) got into the swing of things and had a lemonade stand in our neighborhood to benefit the cause. Made $7.40. Isn't that great?

Family, I am sorry this is so long, but I knew you needed to know.

Joanne, I will miss you.

To all the kids that have had surgery - What troopers!

To parents - You made it through another tough one - Hang in there!

To Christine - I am praying for you.

Sherry Belsley - Where are you? And when are you going to say Hi to everyone else?

I will be gone for at least a week, I don't know how long Kris will be in the hospital but I will let you know as soon as we get out.

Our telephone number is (281) 479-3190- In case, someone out there wants it.

Adios, Mis amigos, Hasta la vista!

Ruth Contreras ========================================================================= Date: Wed, 3 Jun 1998 08:42:05 -0700 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Scott Pengelly <scottp@EUGENE.COM> Subject: Good going: Comments: To: AOL User <MHTeach102@AOL.COM> Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

Good morning Ruth Contreras:

Congratulations! You are pretty amazing. All the best with what comes next. You are doing so much and doing so well.

All the best, Scott Pengelly Eugene, Oregon ========================================================================= Date: Wed, 3 Jun 1998 13:22:46 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jennifer Graham <Jenngram@AOL.COM> Subject: Re: Bandages changes Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

when Jordan had his cranial surgery there were no bandages to change. For his hand surgeruy we went to the plastic surgeons office about 10 days post-op to have them changed and redressed. Then (today) went back to have everything removed for good. Minus a few minor bandages after incision cleanings if they bleed. The dr. was very good at showing me what he was using and how he was doing it, incase Jordan got them off..which he did...so we could redress them properly..which we did. If there was ever any doubt I could always go see him, but felt it wasn't needed. Now this fresh wound care is a little gross, bur doesn't seem to bother Jordan too terribly much. I'd ask if you could do it at home..and if a problem develops, or your uncomfortable doing it then you could always change your mind and go see him. Its not too hard once you realize whats being done and why. Buts its still a bit yucky!!! It amazes me how Jordan will use his hand so much, when to me, it looks horribly painful. Oh well..guess kids are stonger than grown ups!!!!

Good Luck Jenn(Tampa/St. Pete) ========================================================================= Date: Wed, 3 Jun 1998 14:10:41 -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: foster <foster@ICONTECH.COM> Subject: Thanks Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

Thank you for your information about the changing of the bandages. We will ask the doctor on friday if it is time for us to do the changing.

Ruth, good job. You are a great humanbeing for caring so much for others and for going one step further by going out and doing something about it. Good luck to Miss Vivi. I am very pleased to hear that Kris is well enough to have the surgery and we will be praying that everything goes well for your family and Kris .

I also will be having some surgery done on the 16th of June. It seems that I have Polyps on both of my vocal cords and my ENT wants them removed as soon as possible. I thought I was loosing my voice from yelling to much but that turned out not to be the case. I have also been to see a Endocinologist who found a nodule on my thyroid. She did a needle biopsy which came back ok so she agreed that for now surgery for the polyps is something that needs to be done now. The nodule will will be removed later. It seems that the two surgeries can not be done at the same time. Well anyway they don't want to do them at the same time. I used to be a heavy smoker but I quit a long time ago. I can't say any of this was caused by smoking but I am sure it didn't help. Not the thyroid but the polyps . I guess smoking will catch up to you sooner or later. Well thats enough of that.

We are so pleased with the pictures we have been receiving and we will be sending out the last ten this week. If anyone has not received one by the end of next week pleased let me know because we don't want to skip anyone.The last one we got was yesterday and that was of a cutie named Sarah Vicars.

I want to wish good luck to everyone who has up coming surgeries. I don't know who is next after Kris so I am sorry that I can't wish everyone personally but I will be praying as always for everyone.

Collen, We were blessed during the two storms because nothing of ours was affected but it was pretty bad and we were scared. There was a lot of damage done as close as across the street.

Well bye for now and hope everyone is doing well.

Karen(PA) ========================================================================= Date: Wed, 3 Jun 1998 14:28:16 -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: foster <foster@ICONTECH.COM> Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

I thought about something else that might be helpful after hand surgery. Billy bangs on things and he gets very frustrated because he can't play with some of his favorite toys. Yesterday when I was picking up pictures at Wal-Mart I saw a inflatable Mickey Mouse punching toy the kind that has sand in the bottom so that the toy bounces backup. Well I bought one for Billy and he loves it he can smack it without hurting himself and he can hug it and plays for a while. I just thought that I would pass that on for anyone who is looking for something during that awful time after surgery.

Karen

P.S. As with any inflatable toy supervision is always a good idea. ========================================================================= Date: Wed, 3 Jun 1998 13:20:37 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Laurie Bailey <jkb@ELPASO.NET> Subject: Re: Lake Shelbyville MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit

Hey guys!

The phone number to The Sheby Inn is 217-774-3991. Make your reservations fast. They were filling up too.

Laurie jkb@elpaso.net

---------- > From: Judy Amerman <jamerman@UTI.COM> > To: APERT@LISTSERV.AOL.COM > Subject: Lake Shelbyville > Date: Monday, June 01, 1998 7:15 PM > > Hi all, > Just to let you know, Laurie Bailey e-mailed me earlier to let me know that > robinhood woods is booked up as far as the cottages go. I'm sure the > campgroung isn't. > So If anyone else is thinking of joining us, Laurie wound up missing > Robindhood and is staying instead at the Shelby Inn. So Laurie when you > read this, could you share that phone number? The shelby inn is 3 miles > from where myself and Dori Jefferson will be staying. > Don? Did you have your happy meal today? I know that Cat got her Zips but I > thought maybe you were addicted to them by now. > Judy ========================================================================= Date: Wed, 3 Jun 1998 20:58:04 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: Janine Krebs <Yonstein@AOL.COM> Subject: Re: hello!!! - Joining the serv Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Dear Jenny:

Welcome to the group. My name is Janine and I have two children, Nicholas and Emily (10 months) with Aperts. I have some family down in Georgia, Atlanta to be specific. Sounds like you have a wonderful family and group of friends to support you. I am sure you will find this listserve as wonderful and supportive as I have.

Good luck to you.

Janine Krebs (NY) If you want to be on the picture exchange, just give us your address and let us know you would like to exchange photos. ========================================================================= Date: Wed, 3 Jun 1998 21:09:35 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: Janine Krebs <Yonstein@AOL.COM> Subject: Re: See you later Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Joanne:

I will miss your stories and wonderful sense of humor while you are gone. Please take extra care of yourself and whenever you can, be back in touch with us. I hope that it' s nothing too serious for you to be leaving.

Enjoy your summer.

Janine ========================================================================= Date: Wed, 3 Jun 1998 21:10:57 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Janine Krebs <Yonstein@AOL.COM> Subject: Re: Surgeries Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Glad to hear that Mitchell and Billy are home from surgery and doing well.

Good luck to Kris and Jonathan on upcoming surgeries.

Thinking of everyone.

Janine ========================================================================= Date: Wed, 3 Jun 1998 21:44:12 -0400 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: ROBIN L HILL <CARMENRAE@PRODIGY.NET> Subject: Re: hello!!! - Joining the serv MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit

Janine,

I don't remember you mentioning you have family in Atlanta. We would love to get together with you guys if you are ever down visiting. We are only 30 miles southwest of Atlanta. In fact, my husband drives into Atlanta to work every day. Let us know if you're ever coming this way.

The Hills (Mike, Robin, and Carmen Rae)

---------- > From: Janine Krebs <Yonstein@AOL.COM> > To: APERT@LISTSERV.AOL.COM > Subject: Re: hello!!! - Joining the serv > Date: Wednesday, June 03, 1998 8:58 PM > > Dear Jenny: > > Welcome to the group. My name is Janine and I have two children, Nicholas and > Emily (10 months) with Aperts. I have some family down in Georgia, Atlanta to > be specific. Sounds like you have a wonderful family and group of friends to > support you. I am sure you will find this listserve as wonderful and > supportive as I have. > > Good luck to you. > > Janine Krebs (NY) > If you want to be on the picture exchange, just give us your address and let > us know you would like to exchange photos. ========================================================================= Date: Wed, 3 Jun 1998 20:06:58 -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: WELCOME MIME-version: 1.0 Content-type: text/plain; charset="us-ascii"

Jenny, Welcome to our family. It is nice to have adults to talk to and get their opinions on certain subjects. My son is 2years and 3 months old. He is a joy and a major handful. He has a sister that is 9 years old and a great helper and big sister. My husband was born is '67 so you and him are close in age. I hope you enjoy this list and hope to be hearing from you often.

Denise Graham ========================================================================= Date: Thu, 4 Jun 1998 14:55:59 +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> Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

>Wal-Mart I saw a inflatable Mickey Mouse punching toy the kind that has sand >in the bottom so that the toy bounces backup.

Sounds like a few parents need one labelled "insurance company"!!

With user-pays coming into our New Zealand systems we are taking these stories of insurance-companies-from-hell as a warning.

Cheers, Ann NZ ========================================================================= Date: Wed, 3 Jun 1998 23:20:47 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: Frank & Annette Contrino <contrino@BUFFNET.NET> Subject: Photo Exchange Mailing List Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

Howdy Folks,

I have put an HTML version of the mailing list up on our webpage. Being that it's late and I don't feel like screwing around, I have not put a link to it from our main page, so the only way you can get to it is:

http://www.buffnet.net/~contrino/apertnam.htm

It is sorted alphabetically. I just counted 48 names, but I swear there were 49 before I uploaded the file to my server. Someone is lost in cyberspace now. This is the file I said I sent to Don which probably got dumped in the bit bucket too. Anyway, if you look at the table and want to add/modify/delete something, drop me an email and I'll update the info. We are still working on sending out pictures of Nicole. I hope to have the copies made this week. Sorry it's taking so long, but this life stuff keeps you busy.

Frank Contrino contrino@buffnet.net ========================================================================= Date: Thu, 4 Jun 1998 00:08:49 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Claudia Mastellone <JReyesmich@AOL.COM> Subject: Gabriel Dantur? Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Hi Gabriel I'm Claudia (Ruth told me that you want some info about Vivi) I'm trying to reach you .Could you please e-mail me privetely. I'm going to wait for your mail. Thank you. ========================================================================= Date: Thu, 4 Jun 1998 18:41:11 +1200 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Howard & Ann <howrdnan@IHUG.CO.NZ> Subject: The Great Photo Exchange Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

A couple of days ago someone asked how many names were on the list - sorry, I can't remember who it was. There are 51 names on my list (including us). If anyone differs please let me know - I can send a copy of my list if you are short and you can send me a copy of yours if I am!

Regards Ann NZ ========================================================================= Date: Wed, 3 Jun 1998 16:19:41 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Christy Louden <clouden@CAMALOTT.COM> Subject: Hey! It's been awhile! MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit

Hello to all! It has been awhile since I have been in contact with most of you. For those who are new or don't remember me, I am an Assistant Director at an Early Childhood Intervention (ECI) Agency in Abilene, TX. I work with a child who has Apert's. He has had several surgeries lately and is doing well. He had a shunt placed in his head a few months ago and recently had cranial vault remodeling. The family expects the hand surgeries next--somewhere around July. His Occupational Therapist and I have a few questions about what it is like following the hand surgeries. More specifically, how long does it usually take before we can work with him more intensely; what kinds of precautions should we take? As it is, he is being served in his natural environment (home) in the country (about 25 miles from Abilene). Will he need therapy in a more sterile setting for the first month or so following the hand surgery?

Thanks for all of the initial welcome letters when I first joined. I am so impressed at your wonderful support network. Happily, I can report that due to my new job title (and the little clout that goes with it) I have internet access at my desk. This will be so great for a lot of our families who just need to know that there are others out there that go through the same things they do. You can expect that my little friend's mom will be coming in here and sending you all letters real soon! Unfortunately, they do not have a computer or internet access; therefore, any communication to them will have to be made through me. I did see in an e-mail some addresses of families in the network. I have copied them for the family and will be sending them to the family very soon.

Recently, while attending an ECI conference, I met up with a girl I graduated from high school with who also works with a family of a child with Apert's. What coincidence! I bragged on how great y'all have been for each other. I gave her the address for Teeter's Page and told her to share it with the family in case they were not aware of the network. Her name is Christy and she works for an ECI agency in the North Dallas area.

I am interested in trying to set up the family I work with--with others who reside in the North/West Texas area. Really, I don't have to be picky, but I would really like to try to help this family feel more involved with the network and have someone to call for advice or a shoulder to lean on--that's been there. Does that make sense?

Sorry this is a long one! Guess I should have asked some of these questions a long time ago. I'm praying for all of you with upcoming surgeries and othe medical issues. Take care and keep up the great work!!!

Christy Louden clouden@camalott.com ========================================================================= Date: Thu, 4 Jun 1998 12:03:00 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Lynn Thornquist <Thornq@AOL.COM> Subject: Re: Bandages changes Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

When Andrew had his hands done, Dr. Upton put casts on for three weeks. Thankfully we did not have any bandages to change. We did however need to change dressings when he got the necrosis on his head after surgery. Those were wet to dry dressings and I don't think that they will apply here.

Sorry I couldn't help any.

Lynn ========================================================================= Date: Thu, 4 Jun 1998 19:35:15 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: "<George Siebert>" <GSieb91515@AOL.COM> Subject: Re: Hey! It's been awhile! Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Christy,

Feel free to pass our name and number along to your family. We live in North Houston and our son is 18 months old with Aperts. Our phone is (281) 360-8573 or email at GSieb91515@aol.com. Thanks for the update.

Brenda Siebert ========================================================================= Date: Thu, 4 Jun 1998 19:38:18 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: "<George Siebert>" <GSieb91515@AOL.COM> Subject: Re: Surgeries Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Thanks Janine-

We went to the pediatrician this morning to check Jonathan's lungs because he has had a sore throat. He had a 101.9 temp and slightly red ears and throat. We were told to come in the morning anyway and they would decide whether to go through with the surgery. I sure hope he is better in the am. If we don't go tomorrow it will be another couple of months before we can get on the schedule where we won't be dealing with bandages during our vacation in July. Keep your fingers crossed.

Brenda ========================================================================= Date: Thu, 4 Jun 1998 19:40:18 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: "<George Siebert>" <GSieb91515@AOL.COM> Subject: Re: Can you help a desperate guy? Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Don-

I haven't heard back from you. Do you still need the black cat teeny beanie baby? If not, please let me know. I have others who may be interested. Also, still need a Dobie if there is one floating around out there.

Brenda Houston ========================================================================= Date: Thu, 4 Jun 1998 19:43:53 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "<George Siebert>" <GSieb91515@AOL.COM> Subject: Re: The Great Photo Exchange Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Ann-

I only have 50 names. I'm afraid I'm missing someone. Can you please send your list? thanks ever so much.

Brenda ========================================================================= Date: Thu, 4 Jun 1998 18:06:06 -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: Daryl's picture? MIME-version: 1.0 Content-type: text/plain; charset="us-ascii"

If anyone has not received Daryl Graham's picture yet, chances are I missed your adress! Please e-mail me and give your adress one more time! Thanks for your patience. I have received these so far:

Carmen Ceci Emily Nicole Mar Mar Sara Elizabeth Quintin Colin Seth Breanna Sarah Lacara Jacob Vivi Morgan Roxanne Nick Amerman Nate Amy Esler Johnathan Seibert Andrea Jordan Zoey Courtney Jennerjohn Felipe & Rafael Kayla Smith Sarah Vicars Billy Foster The Peach

Denise Graham ========================================================================= Date: Thu, 4 Jun 1998 22:34:31 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Dawn and John Jennerjohn <DnJJenner@AOL.COM> Subject: Re: Can you help a desperate guy? Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Brenda, and Don Neither one of those have come out here yet... Oregon that is I will keep my eye out for them I do have 2 each of the koala and hippo

Dawn ========================================================================= Date: Thu, 4 Jun 1998 21:57:07 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Laurie Bailey <jkb@ELPASO.NET> Subject: Re: Photo Exchange Mailing List MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit

Hey guys!

I have some names that are not listed on the HTML version of the mailing list. They are the following:

Allison Bledsoe 3812 Laurel Lane Anderson, IN 46011

Steve and Stacy Bell 8122 New Cut Rd Severn, MD 21144

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

The Irvins 47 South Hempstead Rd. Westerville, OH 43081

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

Just thought y'all would like to add these.

Laurie Bailey jkb@elpaso.net

---------- > From: Frank & Annette Contrino <contrino@BUFFNET.NET> > To: APERT@LISTSERV.AOL.COM > Subject: Photo Exchange Mailing List > Date: Wednesday, June 03, 1998 10:20 PM > > Howdy Folks, > > I have put an HTML version of the mailing list up on our webpage. Being > that it's late and I don't feel like screwing around, I have not put a link > to it from our main page, so the only way you can get to it is: > > http://www.buffnet.net/~contrino/apertnam.htm > > It is sorted alphabetically. I just counted 48 names, but I swear there > were 49 before I uploaded the file to my server. Someone is lost in > cyberspace now. This is the file I said I sent to Don which probably got > dumped in the bit bucket too. Anyway, if you look at the table and want to > add/modify/delete something, drop me an email and I'll update the info. We > are still working on sending out pictures of Nicole. I hope to have the > copies made this week. Sorry it's taking so long, but this life stuff keeps > you busy. > > Frank Contrino > contrino@buffnet.net ========================================================================= Date: Fri, 5 Jun 1998 07:23:47 -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: "D. Jefferson" <djeff@MIDWEST.NET> Subject: Re: Beanie Babies: MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit

Friends, after the Cabbage Patch craze of the late 80's, I haven't paid much attention to the Beany craze, however, I was at the mall yesterday and found that collectibles were being sold in the center. As I walked by one stand I heard a women ask, "How much is that Zip the Cat on the top shelf?" That caught my attention because I remembered that it had been mention on the net so I listened. He said,"$40.00". It was one of the larger ones, not the mini McDonalds. Wow, does anyone really paid that kind of price for one?

Seth has a sleep study scheduled next week. His breathing at night got really bad about three weeks ago, not only was he having trouble inhaling but also exhaling. Now a week before the sleep study, he is doing much better. We have actually gotten some sleep over the past few nights. I was told that it would take two weeks to get the results.

Wishing everyone well.

Dori A. Jefferson djeff@midwest.net ========================================================================= Date: Fri, 5 Jun 1998 08:32:20 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jennifer Graham <Jenngram@AOL.COM> Subject: Re: Can you help a desperate guy? Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Dawn,

If you want topart w/ the hippo and koala I would love to be in on the auctioning. Jordans room is safari and those would go GREAT. I haven't been able to get them here!!!

Jenn(Tampa/St. Pete) ========================================================================= Date: Fri, 5 Jun 1998 08:36:03 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: Jennifer Graham <Jenngram@AOL.COM> Subject: Re: Beanie Babies: Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Good Luck w/ the sleep study. I know Jordan has been batteling a stuffy nose and having some trouble sleeping. Luckly its clearing up..And for the Beanies....I have made it a rule for myself not to pay more than 5.00 for the bigger ones..In Kansas City I could get them for 3.99 from authorized dealers..not those who mark them up to insane prices. so far, I have stuck to my guns on this one!!!

Jenn(Tampa/St. Pete) ========================================================================= Date: Fri, 5 Jun 1998 12:02:41 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "<George Siebert>" <GSieb91515@AOL.COM> Subject: Re: Surgeries Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Good Mornining!

Well we checked in at 6:30 this morning and Jonathan had a 100.7 temp. We went through the regular drill anyway and then at 8:30 the surgeon cancelled the surgery. We are so disappointed. The next availabe date is Aug. 3rd. The doctor's office is trying to trade days with other docs for the OR and possibly use another facility. Most of the other hospitals have a minimum age limit though. Oh well, I guess it was meant to be another day.

Wishing everyone else well.

Ruth, we are sorry we didn't get to meet you and hope that Kris is recovering nicely. I understand she wasn't able to get as much done as she wanted. I am sure we will meet sometime this summer if we can coordinate schedules. Wishing you all the best during recovery. Please let me know if I can do anything to help with Vivi.

Tamara, Sorry we missed you also. I understand your going to Dallas on the 9th. Please let me know how it goes. Good luck. We will be there again on the 18th for x-rays and followup. Hope Sarah is doing well and we will be in touch.

Brenda Houston ========================================================================= Date: Fri, 5 Jun 1998 13:51:07 -0400 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Don Sears <dsears@SCRS.STATE.SC.US> Subject: Re: Can you help a desperate guy? MIME-Version: 1.0 Content-Type: text/plain

Hey - sorry - been completely tied up all week... Cat got her cats and I think she got you a Doby - I'll have her write this weekend. Thanks!!! Don

> -----Original Message----- > From: <George Siebert> [SMTP:GSieb91515@AOL.COM] > Sent: Thursday, June 04, 1998 7:40 PM > To: APERT@LISTSERV.AOL.COM > Subject: Re: Can you help a desperate guy? > > Don- > > I haven't heard back from you. Do you still need the black cat teeny > beanie > baby? If not, please let me know. I have others who may be > interested. > Also, still need a Dobie if there is one floating around out there. > > Brenda > Houston ========================================================================= Date: Fri, 5 Jun 1998 14:09:10 -1000 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "Dr. Joana Magno" <magnomd@ALOHA.NET> Subject: Re: Can you help a desperate guy? MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit

We've got a couple of hippos that we would be willing to trade --looking for the penguin or the giraffe.

Please send me a private e-mail.

(My apologies to the rest of you who thought that this list was a safe haven away from the beanie babie craze!!)

Joana Magno Honolulu ========================================================================= Date: Sat, 6 Jun 1998 07:58:59 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: Jennifer Graham <Jenngram@AOL.COM> Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Just a bit of info.....My neighbor was told last night that the only place in Tampa to find the giraffe was at a...get this...PAWN SHOP!!!!! OHMIGOODNESS!!!!! I wonder how much they go for there???? Who would have thought, eh?

Sorry to hear about Johnathons surgery getting postponed...Thats hard..esp. when there is such a long waiting list. Hopefully something will pan out so you can get it done sooner. Although, we haven't more than 4 hrs sleep (noncontinuous at that) since May 17 (the night before Jordans first hand surgery)...so perhaps its a blessing in disguise?????!!!!!

Good Luck to Kris on her upcoming procedure.

Hope everyone is staying cool...and having a good weekend

Jenn(Tampa/St. Pete...heat index of 102 this morning at 8..sheesh!!!!) ========================================================================= Date: Sat, 6 Jun 1998 14:48:14 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: Jenny Brown <Firefli007@AOL.COM> Subject: Re: Photo Exchange Mailing List Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Hello all,

I would like to get on the photo exchange... It is truly incredible how simiar my childhhod pictures sre to the ones on Teeter's Page,, Incredible

My address is Jenny Brown 230 East 52nd Street Savannah, Georgia 31405

Phone is (912) 233-6094 E-mail is Firefli007@ aol.com

Good Luck to all having surgeries.... Good luck on the Beanie Baby quests.. Everyone is in my thoughts and prayers.

I leave Thursday for two weeks in England for vacation!!!!!!! Hang in there everybody. Peace & Prayers, Jenny ========================================================================= Date: Fri, 6 Jun 1997 13:12:14 -0700 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Longshot & Darwin <Longshot.Darwin@MCIONE.COM> Subject: Re: Can you help a desperate guy? In-Reply-To: <c4cfd169.3571ba37@aol.com> MIME-version: 1.0 Content-type: text/plain; charset=US-ASCII; X-MAPIextension=".TXT" Content-transfer-encoding: 7bit

Brenda,

I have a Scoop if you are interested. I am also looking for Zip if anybody has one. Good Luck to those having surgries.

Rachel longshot.darwin@mcione.com ========================================================================= Date: Sat, 6 Jun 1998 16:00:50 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Janine Krebs <Yonstein@AOL.COM> Subject: Re: Surgeries Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Brenda:

Sorry to hear about the cancellation. I guess you just have to go with what you said, it wasn't meant to be. Easier said, right? Hope Jonathan is feeling better.

Take care,

Janine ========================================================================= Date: Sat, 6 Jun 1998 20:29:52 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: "<George Siebert>" <GSieb91515@AOL.COM> Subject: Re: Can you help a desperate guy? Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Don- Glad Cat got her cats. I'm still in need of Doby, if ya'll have it.

Joana- I have a waddles, the pelican if you still need it. Email me if you do.

Rachael - I have scoop, but thanks anyway. I do have a Zip for you though since Cat got hers. Let me know where to send it.

We have received photos of Amy Maclean. Good luck with your surgery. Pat, we just got Eva Jessie's. Looks like that swing is lots of fun. Thanks alot.

Jonathan is still a little feverish but nothing major. The fever is the only symptom he has so I guess it's a viral thing.

Hope everyone has a happy, healthy week-end.

Brenda Houston ========================================================================= Date: Sat, 7 Jun 1997 12:30:59 -0700 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Longshot & Darwin <Longshot.Darwin@MCIONE.COM> Subject: Re: Can you help a desperate guy? In-Reply-To: <24602438.3579df02@aol.com> MIME-version: 1.0 Content-type: text/plain; charset=US-ASCII; X-MAPIextension=".TXT" Content-transfer-encoding: 7bit

Brenda,

Mail it to

Rachel Fletcher 3900 Vernon Memphis, Tn 38122

Just let me know what I owe you for it. I apperiate it.

If anyone needs a Scoop let me know.

Rachel longshot.darwin@mcione.com ========================================================================= Date: Sun, 7 Jun 1998 18:49:37 -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: [Fwd: Fw: [Fwd: Fw: If it happened today]] MIME-Version: 1.0 Content-Type: multipart/mixed; boundary="----=_NextPart_000_01BD9245.057FC420" Content-Transfer-Encoding: 7bit

This is a multi-part message in MIME format.

------=_NextPart_000_01BD9245.057FC420 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit

Hi, Thought some of you might enjoy this. Judy

---------- > From: billt <billt@techinter.com> > To: Al Renkosik <ren2084@TheRamp.net> > Cc: Van Thompson <CThompson@prairienet.com>; Terry Tovrea <tjt@indianvalley.com>; kalillagore@juno.com; Judy Amerman <jamerman@uti.com>; jbunton@prairienet.com; mcintyre@uti.com; bobsal@snd.softfarm.com; dmm@mtco.com > Subject: [Fwd: Fw: [Fwd: Fw: If it happened today]] > Date: Monday, April 13, 1998 7:38 PM > > Know what kind of lights Noah had on the Ark? > > > > > > > > > > > > > > > > > > > Flood Lights!!! > > A little "light humor" > > Sheryl > ------=_NextPart_000_01BD9245.057FC420 Content-Type: message/rfc822 Content-Transfer-Encoding: 7bit

Return-Path: <srenwalk@cbcast.com> Received: from isp.cbcast.com (isp.cbcast.com [206.222.53.1]) by ns1.techinter.com (8.8.6/8.8.7) with ESMTP id RAA23725 for <billt@techinter.com>; Thu, 9 Apr 1998 17:42:02 -0500 Received: from default (ppp19.cbcast.com [206.222.53.69]) by isp.cbcast.com (8.8.5/8.6.10) with ESMTP id RAA27259; Thu, 9 Apr 1998 17:41:12 -0500 Message-Id: <199804092241.RAA27259@isp.cbcast.com> Reply-To: <srenwalk@cbcast.com> From: "srenwalk" <srenwalk@cbcast.com> To: "Kelli Walker" <Kelli.Walker@aul.com>, "Brian and Lisa Walker" <blcwalker@compuserve.com>, "Brian & Alicia Weber" <bwrancho@juno.com>, "Gary Walker" <walker@uti.com>, "Bonnie Korengel" <tducpa@dplus.net>, "Cory Korengel" <ckorenge@wvu.edu>, "Tracy Larsen" <tlarsen@athena.valpo.edu>, "Jill Odom" <jpo@uti.com>, "Peter & Patty Roumeliotis" <iatros7@cbcast.com>, "Bob and Karen Larson" <G1126@aol.com>, "Marcia Wolter" <dolllady@intrnet.net>, "Nancy Rockis" <nrockis@matrix.uti.com>, "Diane Zelinko" <DZCakes@aol.com>, "Susan Wach" <SRT_Wach@compuserve.com>, "Ute Becherer" <Ute.Becherer@UCHSC.edu>, "Scheryl Seymour" <Scheryl1@juno.com>, "Mark Peacock" <mpeacock@juno.com>, "Ron Wohlwend" <rlwohl@aol.com>, "Ruben DeLuna" <rdeluna@pike.K12.in.us>, "Joy Belt" <joyous@uti.com>, "Bill and Sheryl Thompson" <billt@techinter.com> Subject: Fw: [Fwd: Fw: If it happened today] Date: Thu, 9 Apr 1998 17:42:51 -0500 X-MSMail-Priority: Normal X-Priority: 3 X-Mailer: Microsoft Internet Mail 4.70.1157 MIME-Version: 1.0 Content-Type: multipart/mixed; boundary="----=_NextPart_000_01BD63DE.EB4E2AE0" Content-Transfer-Encoding: 7bit

This is a multi-part message in MIME format.

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---------- > From: Brian Zieber <zieber@uti.com> > To: Barb Zieber <jsherck@cros.net>; Carol Walker <srenwalk@cbcast.com>; Don Foster <BigDon@uti.com>; Mike Medford <mmedfor@emory.edu>; Phil Fisher <pjfisher@juno.com>; Steve Zieber <szieber@magnum.mco.edu>; Wendi & Tommie Culpeppers <tculpep@pop3.utoledo.edu> > Subject: [Fwd: Fw: If it happened today] > Date: Thursday, April 09, 1998 5:11 PM > > We thought We would pass along some humor. > Hope you have a blessed Easter. > Brian & Lena > ------=_NextPart_000_01BD63DE.EB4E2AE0 Content-Type: message/rfc822 Content-Transfer-Encoding: 7bit

Return-Path: <fpchurch@uti.com> Received: from hkyxztrz (uti002.uti.com [207.227.15.2]) by matrix.uti.com (8.8.7/8.8.5) with ESMTP id RAA21059 for <zieber@uti.com>; Thu, 9 Apr 1998 17:00:16 -0500 Message-Id: <199804092200.RAA21059@matrix.uti.com> From: "First Presbyterian Church, Morris" <fpchurch@uti.com> To: "Brian Zieber" <zieber@uti.com> Subject: Fw: If it happened today Date: Thu, 9 Apr 1998 17:08:10 -0500 X-MSMail-Priority: Normal X-Priority: 3 X-Mailer: Microsoft Internet Mail 4.70.1161 MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit

---------- > From: Harold_Smith@sil.org > To: ks-olson@uchicago.edu; linkgospel@aol.com; WortonM@aol.com; worship1@essex1.com; wells@writeme.com; JON@COIINC.COM; BCCBRENT@aol.com; fpchurch@uti.com; DHREM@aol.com; RPLN30A@prodigy.com; jcstoker@juno.com; royaleta@juno.com; ronzie@aol.com; ekstrand@ncn.net; mamatutt1@juno.com; FCASSEMBLY@juno.com; ETBC@juno.com; ksmith4@tuelectric.com; Brian_Schrag@sil.org; Mike-Marna_Reece@sil.org; Jon-Kim_Caton@sil.org; Wendy_Buchanan@sil.org; CompassionMinistries@compuserve.com; 105103.3533@compuserve.com; jrspriegel@compuserve.com > Subject: If it happened today > Date: Tuesday, March 31, 1998 12:00 PM > > > > NOAH'S ARK: IF IT HAPPENED TODAY > > > > > And the Lord spoke to Noah and said, "In six months I'm going to > > > make it rain until the whole Earth is covered with water and all the > > > evil people are destroyed. But I want to save a few good people, and >

> two > > > of every living thing on the planet. I am commanding you to build an > > > Ark." And in a flash of lightning, He delivered the specifications > > for an > > > Ark. "Okay," said Noah, trembling with fear and fumbling with the > >

> blueprints. > > > "Six months, and it starts to rain," thundered the Lord. > > > "You'd better have the Ark completed, or learn to swim for a very long > > time." > > > Six months passed, the skies clouded up and rain began to fall. > > > The Lord saw that noah was sitting in his front yard, weeping. . . > > > .And there was no Ark. > > > "Noah," shouted the Lord, "Where is the Ark?" > > > "Lord, please forgive me!" begged Noah. "I did my best. But > > there > were big problems." > > > "First, I had to get a building permit for the Ark construction > > > project, and your plans didn't meet code. So I had to hire an > > > engineer to re-draw the plans. Then I got into a big fight over > > whether or not > > > the Ark needed a fire sprinkler system. > > > "Then my neighbor objected, claiming I was violating zoning by > > > building the Ark in my front yard, so I had to get a variance from the > > > city planning commission. > > > "Then I had problems getting enough wood for the Ark, because > > > there was a ban on cutting trees to save the Spotted Owl. I had to > > > convince the U.S. Fish and Wildlife that I needed the wood to save the > > > Owls. But they wouldn't let me catch any owls. So, no owls. > > > "The carpenters formed a union and went out on strike. I had to > > > negotiate a settlement with the National Labor Relations Board before > > > anyonen would pick up a saw or hammer. Now we have sixteen carpenters > > > going on the boat, and still not owls. > > > "Then I started gathering up animals, and got sued by an animal > > > rights group. They objected to me taking only two of each kind. > > "Just > when I got the suit dismissed, EPA notified me that I > > > couldn't complete the Ark without filing an environmental impact > > > statement on your proposed flood. They didn't take kindly to the idea > > > that they had no jurisdiction over the conduct of a Supreme Being. > > > "Then the Army Corp of Engineers wanted a map of the proposed > > new

> flood plain. I sent them a globe. > > > "Right now, I'm still trying to resolve a complaint from the > > > Equal Employment Opportunity Commission over how many Croatians I'm > > > supposed to hire. The IRS has seized all my assets, claiming I'm > > > trying to avoid paying taxes by leaving the country. And I just got a > > notice > > > from the state about owing them some kind of use tax. I really don't > > > think I can finish the Ark for at least another five years," wailed > > > Noah. > > > The sky began to clear. The sun began to shine. A rainbow > > > arched across the sky. Noah looked up and smiled. "You mean you're > > > not going to destroy the Earth?" Noah asked hopefully. > > > "No," said the Lord sadly. "The government already has."

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------=_NextPart_000_01BD9245.057FC420-- ========================================================================= Date: Sun, 7 Jun 1998 20:26:55 -0600 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Chad & Denise Graham <cgraham@INFOAVE.NET> Subject: NOAH'S ARK MIME-version: 1.0 Content-type: text/plain; charset="us-ascii"

JUDY, LOVED THE JOKE AND THE STORY! IT IS SOOOOOOOOO TRUE!! THANKS FOR MAKING ME AND MY HUSBAND LAUGH!

DENISE GRAHAM