========================================================================= Date: Thu, 28 May 1998 22:59:47 -0700 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: lisa mcgahan <wmcgahan@IX.NETCOM.COM> Subject: Re: post exterior release MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit

stacy-

why does brooke have to have another posterior release done? do you think if they would have waited until she was a little older it would only have had to be done once? thanks -- lisa

---------- > From: Steve & Stacy <sshb@EROLS.COM> > To: APERT@LISTSERV.AOL.COM > Subject: Re: post exterior release > Date: Tuesday, May 26, 1998 10:16 AM > > Brooke had to have a postier release at 5 months. She will probably have a 2nd > postier surgery in another 3-4 months (at about 21 months of age) > Stacy Bell > > lisa mcgahan wrote: > > > has anyone had a post exterior release operation? this is the reshaping of > > the back of the head. morgan's head is very long and flat in the back. the > > doctor's say that it helps make the head rounder and also will provide > > better results for after the bigger frontal surgery? many thanks -- lisa ========================================================================= Date: Thu, 28 May 1998 22:33:12 -0700 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Eric & Penny Halverson <hwy2heaven@EARTHLINK.NET> Organization: Crouzon Support Network Subject: IRC Chat on Friday, May 29th Comments: To: crouzon@u.washington.edu MIME-Version: 1.0 Content-Type: text/plain; charset=koi8-r Content-Transfer-Encoding: 7bit

Hey everyone!!

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

Date to Meet On: Friday, May 29th

IRC Server: ChatNet (Any Locations)

Port Setting: 6667

Channel: #apertcrouzon

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

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

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

http://www.mirc.co.uk

For MAC users: Please download IRCle at:

http;//www.amug.org/~ircle/

Hugs, Penny :-)

mailto:penny@crouzon.org ========================================================================= Date: Fri, 29 May 1998 08:35:50 -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: New Listserv Family from PA Comments: To: Gary Puleio <p8896@alltel.net> MIME-Version: 1.0 Content-Type: text/plain

OK, first let me explain a little more about the Apert Listserv. It is a totally free service, owned by me, and hosted by America Online. It is an email-based service which sent you the mail you saw yesterday. Think of it as a public bulletin board. When you write a regular email message to the special address, which is apert@listserv.aol.com, it is automatically sent to all people signed up on the list. There are currently about 150 subscribers all over the world. They are mostly families like yours and mine, but there are also some craniofacial surgeons, teachers, psychologists, students, grandparents, and adults with Apert. They read the messages, just as you did, and reply back to the listserv address so that everyone can get the benefit instead of just one person. This way we pass along tips, keep track of who is having surgeries, and learn from each other. You are now subscribed to this list, and it will never cost you a penny.

Teeter has had two cranial remodeling surgeries, but these are not the same as a midface surgery. She has not had one of these. There are quite a few parents subscribed who have gone through with their kids what you are about to go through with Donald. For that reason, I am going to forward this reply not only to you but to the listserv. You should get two copies of it - one from me directly and one from the listserv. It will serve as your introduction to our family and I am sure they will begin to reply right away!!!

> Hi Don. Gary, Donald and I live at 5568 Autumnwood Drive, Cochranton, > PA > 16314. We're 90 miles north of Pittsburgh, PA. All of Donald's > surgeries > are done at Children's Hospital in Pittsburgh. Dr. Wolfgang Losken > is our > cranial-facial specialist. Donald's fingers are still fused. After > three > opinions, all surgeons agreed that Donald would lose the use of his > fingers > if separated. Right now there doesn't seem to be anything he can't > do but > write at this time. That might have something to do with the missing > corpus callosum that I just read in articles you sent. This surgery > has us > worried. We go back to the doc on Monday and maybe will learn more. > Right > now we are just scared. We have so many questions . Is Don's jaw > going to > be wired shut? What does this face frame look like? Can he eat? > Ride his > bike? Go to the zoo? You know everything. I"ll write more later, > but > nice meeting you and we'll talk later. Are you hooked up to any chat > lines > like ICU? I don't reallly want to dish out AOL fees when there are so > many > freebies out there. Also, you didn't say if your daughter has gone > through the midfacial surgery. Thanks for your help > > Linda p8896@alltel.net ========================================================================= Date: Fri, 29 May 1998 12:52:25 -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: Updates MIME-Version: 1.0 Content-Type: text/plain

Done so far and still working:

Updated Teeter's page for thumbnail photos of Nick Amerman with link to his page Updated Adrienne Rus with new photos and text ========================================================================= Date: Fri, 29 May 1998 12:58:27 -0400 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Don Sears <dsears@SCRS.STATE.SC.US> Subject: Can you help a desperate guy? MIME-Version: 1.0 Content-Type: text/plain

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: Fri, 29 May 1998 14:56:48 -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: Kathi Noble <noblek@EAGLE.LKGEORGE.ORG> Subject: Re: Requesting information In-Reply-To: <a870b2fc.355680bf@aol.com> Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

>Hello, > >I am an elementary special education school teacher living in Houston. Next >year I will have a 6 year old student with Apert. I would like to >talk/communicate with parents willing to give me more detailed information on >working with a child with Apert. I have obtained information from the >internet, but first hand information would be of more value in helping my >student. > >Thank to anyone who would be able to help me. > >Karen Arab >De Zavala Elementary >Houston, Tx.

Karen, It's taken me a while to get around to responding to your request. I'm also a special education teacher. I have a student with Apert. He is nine years old and is just finishing his second year in my class. He has a 1:1 assistant to help with behavioral concerns. We're finishing off the year very positively, he has recently been put on medication for ADD. Along with the med., a behavior chart and parental support we are able to get him to attend and focus for longer periods of time and to put more effort into his learning. I could go on and on forever about him. He's a wonderful child with a unquie personality. A few suggestions that I could give you would be to have a very structured, consistent day, always preparing for any changes in the routine. I'm sure that you do all these things because of the students that you work with. I really didn't to anything different with him, just getting to know his likes and dislikes, how long he could attend etc. then using the information to adapt activities and situations to meet his needs. This isn't much, but maybe it will help. You can e-mail me if you want. noblek@mail.lkgeorge.org

Kathi Noble ========================================================================= Date: Fri, 29 May 1998 15:22:05 -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: Don Sears <dsears@SCRS.STATE.SC.US> Subject: Update MIME-Version: 1.0 Content-Type: text/plain

Krista Horning's page is up. ========================================================================= Date: Fri, 29 May 1998 13:31:29 -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: Surgery for EvaJessie Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

Hi Laurie!

Would love some feedback! EvaJessie hasn't done this before. The expander will be her face -- not sure exactly where yet -- I suspect over along her jaw and cheek line. I've found a page on the American reconstructive surgery web site that shows how it works and I understand all that (I guess) but my questions have to do with the amount of pain or pressure she will have and things to do to help her with that.

Could you describe Jacob's tissue expansion. It must have been a tiny little expander to go near his fingers! I know he is still just a peanut (I can tell from his picture), when was it done and how did it go?

Thanks laurie for your offer of info. I would love to have as much as I can get going into this.

We do a walk through of the plastic clinic this morning for a bit of orientation for her. She'll be having the surgeries in Vancouver fbut the injections done here in Calgary.

Thanks again, you are a sweetie (must be where jacob gets it from ;-)

Pat and EvaJessie

>hey baconsmith's: > >Laurie Bailey here. > >Has EvaJessie had tissue expansion done before? Jacob has had the expanders >in twice for his digit separations. Just wondering if you want some >feedback on what to expect. > >Let me know. > >jkb@elpaso.net > >---------- >> From: baconsmith <bluenose@TELUSPLANET.NET> >> To: APERT@LISTSERV.AOL.COM >> Subject: Surgery for EvaJessie >> Date: Wednesday, May 27, 1998 11:39 AM >> >> Just got word yesterday that EvaJessie's tissue expansion will go ahead >this >> summer. We are working out the details for the twice weekly injections, >but >> we now know that the first surgery will take place June 10. So far we've >> booked our flights to Vancouver and a stay at Easter Seal House. Now the >> prep begins. >> I'll start by getting rid of these butterflies in my stomach. >> >> Talk to you all soon. >> Pat in Calgary >> email to: bluenose@telusplanet.net >> IM: onlypeach >> shake and shake the ketchup bottle. none will come and then a lot'll ... >unknown > > email to: bluenose@telusplanet.net IM: onlypeach shake and shake the ketchup bottle. none will come and then a lot'll ... unknown ========================================================================= Date: Fri, 29 May 1998 16:43:07 -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: Update MIME-Version: 1.0 Content-Type: text/plain

Jordan Graham's page is up!!! ========================================================================= Date: Fri, 29 May 1998 15:54:06 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Judy Amerman <jamerman@UTI.COM> Subject: Re: Can you help a desperate guy? MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit

---------- > From: Don Sears <dsears@SCRS.STATE.SC.US> > To: APERT@LISTSERV.AOL.COM > Subject: Can you help a desperate guy? > Date: Friday, May 29, 1998 11:58 AM > > 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 Don, Have you had your Happy Meal today? I give you permission to hold me underwater for 1 minute in mid June. (I think I can hold my breath that long.) but don't drown me completely. Nick still needs his mommy. Judy ========================================================================= Date: Fri, 29 May 1998 17:30:26 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jennifer Graham <Jenngram@AOL.COM> Subject: Re: Update Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

First thank you so much for doing all the web pages...one question... I can't find Jordans..is he on Teeters page or www.apert.org/graham2/graham01 ????? also I couldn't open Adriane's?/ Just me or is anyones else having this problem? Just curious about both.

Also, I'll keep a lookout for the cat..we have the worm, giraffe, crab...Joe refuses to eat Happy Meals, so I have had to beg my neighbors to get 2 for their kids..Needless to say, those poor kids have been having A LOT of Chicken Nuggets lately. I swore I wouldn't get into this Beanie Baby thing..oh well...I swore I wouldn't DO a lot of things when I became a parent that I have ended up doing..Beanie babies included!!!

Just to pass along..this weekend is the Childrens Miracle Network Telathon (nationally)...most of your local Childrens Hospitals will be televising theirs as well..I know these have become special places to all of us, so watch for updates as to what they are doing and planning w/ all that $$$$$$. Our local community sponsers whats called Taste of Pinellas (our county) where local resturants donate food and you purchase tickets and sample the tasty treats. All money goes to the hospital...even though we figure we have given our fare share to the hospital we're going..so I can do what I do best...EAT!!!!! Oh..and support the hospital.

Hope everyone is recovering nicely..Good luck to next week surgical candidates..Since I am soo unorganized I can't remember who is going in..I think Johnathon on the 5th for hands???? Best wishes for a speedy recovery..hopefully less cumbersome than Jordans...aka Houdini.

Have a good weekend...we'll be on full Beanie Baby alert

Jenn(Tampa/St. pete) ========================================================================= Date: Fri, 29 May 1998 20:07:54 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Cat Sears <Irmocat2@AOL.COM> Subject: Re: Update Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

OK, for jordan graham, either go to teeter's page and click on his face, or go directly to

http://www.apert.org/graham2

that's all you need, your browser will do the rest. For Adrienne Rus, I forgot to make her face a link, so you'll have to go direct by typing:

http://www.apert.org/rus

have fun! ========================================================================= Date: Fri, 29 May 1998 20:26:46 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: "<George Siebert>" <GSieb91515@AOL.COM> Subject: Re: More than you ever wanted to know about Tessier clefts (was S Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Pat,

Thanks for the info. Wow, she's really getting a lot done. It continues to amaze me what science can do these days. We are very fortunate to have such great doctors helping our children. I look forward to Eva Jessies's photo whenever it's convenient.

Brenda ========================================================================= Date: Fri, 29 May 1998 20:40:06 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "<George Siebert>" <GSieb91515@AOL.COM> Subject: Re: New Listserv Family from PA Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Welcome Gary, Linda and Donald in Pa. How old is Donald? We wish you all the best.

The Sieberts in Houston (Jonathan is 18 months next week). ========================================================================= Date: Fri, 29 May 1998 20:44:47 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: "<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

Ditto Don- We are burned out on Happy Meals and still have a fridge full. I will most likely be able to get you the cat. I am in desperate need of the dog Dobie (#1). We have one complete set for Melissa and I'm now working on Jonathan's. However, I have not been able to find another Dobie. If anyone can help me I'd be most grateful. I also have an extra Mel if anyone needs #7. Don, I'm 99% sure I can get you Zip. Oh yeah, we are keeping ours in the original packaging for collector's value. Be back in touch asap.

Brenda ========================================================================= Date: Fri, 29 May 1998 20:52:18 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: Update Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

jenn-

Are they doing different beanies in Fla? We don't have the crab (teeny beanies) here in Texas. We do have the lobster though. For any serious beanie collectors (we have all {since about 2 years ago} but Erin and hope to cop her this weekend), there will be 17 new additions tomorrow.

Brenda ========================================================================= Date: Fri, 29 May 1998 18:12:45 -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: Up date:Scott Comments: To: AOL User <MHTeach102@AOL.COM> Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

Hello Joanne:

Thanks again for your kind support. Thanks to Howard and Ann, also. I visited with one of the wounded children today. She reports that "I'm pretty good and feel not too bad until about 1:00 PM and then I just lose all my energy."

She goes before the grand jury on Monday to tell her story. We have more work to do to reduce trauma. Sure appreciate your care and good wishes. You help so much. Thank all of you.

All the best, Scott Eugene, Oregon USA ========================================================================= Date: Fri, 29 May 1998 22:46:09 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Janine Krebs <Yonstein@AOL.COM> Subject: Nightmares? Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Hi all:

I have a question. I remember some time ago discussion about nightmares after surgery. Is it possible for Emily at 10 months old to be having nightmares? Ever since we came home last Friday, she is waking up every night once or twice. I think maybe she's hungry because since the palate surgery she is not taking her bottle real well. When I try to give her a bottle she drinks and ounce or so and that's it. I have to rock her and hold her for a long time before she falls back to sleep. Then when I put her in her crib, she starts crying again and I have to rock the crib for her to settle in. She was always a great sleeper.

I am wondering if this is just the after effects of the surgery, i.e, anesthesia and things or if it's possible to have nightmares at 10 months old.

Any thoughts would be appreciated.

Thanks,

Janine ========================================================================= Date: Fri, 29 May 1998 22:49:43 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Janine Krebs <Yonstein@AOL.COM> Subject: Story Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Here's a story that happened to my husband I thought you might enjoy.

We both work in the courthouse. My husband was in the courtroom with a couple and their daughter, 7 years old. He was standing behind the girl and could see onlly her hands. He noticed that the girl's thumbs were bent a little. Then he looked more and saw that her hands looked like they had surgery on them.

When the girl and mother got up to go to the bathroom, he looked at the girl's face. On the way back, he asked the mother, May I ask you, does your daughter have Aperts? She said, yes. You are the first person ever to ask us that and know what it is. My husband said, I have a daughter with Aperts, 10 months old. The mother was shocked. They had never met any other families with Aperts.

I am going to be in touch with this family and am very excited about it.

Just wanted to share that story with you.

Janine ========================================================================= Date: Fri, 29 May 1998 23:16:05 +0000 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Comments: Authenticated sender is <jgibson2@POP.erols.com> From: Judy Gibson <jgibson2@EROLS.COM> Subject: Re: Nightmares? In-Reply-To: <45298778.356f72f2@aol.com> MIME-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7BIT

> I have a question. I remember some time ago discussion about nightmares after > surgery. Is it possible for Emily at 10 months old to be having nightmares?

It's certainly possible, but since surgery was so recent, another possibility occurs to me. Could she be having some discomfort? I've had surgery several times myself and to have some discomfort a week after surgery doesn't seem terribly unlikely -- nothing that tylenol or pediaprofen wouldn't handle, most likely, though. Check with her doc to see what he thinks.

Judy ========================================================================= Date: Fri, 29 May 1998 22:00:26 -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: Story MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit

Hey Janine:

Isn't it great when we can help other families by just letting them know we are out there?

Laurie Bailey

---------- > From: Janine Krebs <Yonstein@AOL.COM> > To: APERT@LISTSERV.AOL.COM > Subject: Story > Date: Friday, May 29, 1998 9:49 PM > > Here's a story that happened to my husband I thought you might enjoy. > > We both work in the courthouse. My husband was in the courtroom with a couple > and their daughter, 7 years old. He was standing behind the girl and could > see onlly her hands. He noticed that the girl's thumbs were bent a little. > Then he looked more and saw that her hands looked like they had surgery on > them. > > When the girl and mother got up to go to the bathroom, he looked at the girl's > face. On the way back, he asked the mother, May I ask you, does your daughter > have Aperts? She said, yes. You are the first person ever to ask us that and > know what it is. My husband said, I have a daughter with Aperts, 10 months > old. The mother was shocked. They had never met any other families with > Aperts. > > I am going to be in touch with this family and am very excited about it. > > Just wanted to share that story with you. > > Janine ========================================================================= Date: Fri, 29 May 1998 22:14:12 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Laurie Bailey <jkb@ELPASO.NET> Subject: Re: Surgery for EvaJessie MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit

Baconsmiths

I would imagine they will put the expander where they think it can do the most good and also reduce the risk of scarring from the insertion of the expander itself.

Jacob's expanders were only 28 cc ones. So, yes, they were small. But, they grew really large by the time we were done with them. We were able to do the injections of saline at home. It seemed to work out better for us 1)because we are 2 1/2 hours away from Jake's doctors and 2)because Jacob was more comfortable at home. The ports for his expanders were underneath the skin about 2 - 3 inches away from the expander itself. Jake didn't like the injections because of the needle stick into the port. When the expanders got really big it did seem to be slightly painful at the time of injection because of the stretching of the skin. You need to realize though, Jake's were in his hands where there is not a lot of space for movement. Other than those moments, Jacob tolerated them very well. He would stick his hands in his mouth and bang them around on stuff and they were very durable. If he would of accidently punctured one, it is only saline which the body can absorb.

The first set of expanders were a little touchy after they were first put in. Since they go under the skin, the back of Jake's hands had patches similar to blood blisters only bigger. It was just the reaction his skin had to a foreign object being placed there. We just took really good care of it and the skin healed nicely before we started heavy injections. They injections we did were once a week at about 1-2 cc at a time. You doctors will let you know how much they will be doing on EvaJessie at a time. It will probably be a lot more than Jake's because of size and location so don't be surprised. One advantage you have over us is that EvaJessie can tell you if it hurts or not. Jacob wasn't talking yet with his last set of expanders so, if it hurt alot, he couldn't tell us in words.

If you want to see how big Jake's expanders got, you can go to his page on Teeter's Page and look at his pictures.

All I can say is I am a HUGE FAN of tissue expanders. It has saved alot of skin grafts from my sweet little Jacob.

Hope this information helps. If you need anything else, let me know.

Laurie Bailey jkb@elpaso.net

---------- > From: baconsmith <bluenose@TELUSPLANET.NET> > To: APERT@LISTSERV.AOL.COM > Subject: Re: Surgery for EvaJessie > Date: Friday, May 29, 1998 2:31 PM > > Hi Laurie! > > Would love some feedback! EvaJessie hasn't done this before. The expander > will be her face -- not sure exactly where yet -- I suspect over along her > jaw and cheek line. I've found a page on the American reconstructive > surgery web site that shows how it works and I understand all that (I guess) > but my questions have to do with the amount of pain or pressure she will > have and things to do to help her with that. > > Could you describe Jacob's tissue expansion. It must have been a tiny > little expander to go near his fingers! I know he is still just a peanut (I > can tell from his picture), when was it done and how did it go? > > Thanks laurie for your offer of info. I would love to have as much as I can > get going into this. > > We do a walk through of the plastic clinic this morning for a bit of > orientation for her. She'll be having the surgeries in Vancouver fbut the > injections done here in Calgary. > > Thanks again, you are a sweetie (must be where jacob gets it from ;-) > > Pat and EvaJessie > > > > > >hey baconsmith's: > > > >Laurie Bailey here. > > > >Has EvaJessie had tissue expansion done before? Jacob has had the expanders > >in twice for his digit separations. Just wondering if you want some > >feedback on what to expect. > > > >Let me know. > > > >jkb@elpaso.net > > > >---------- > >> From: baconsmith <bluenose@TELUSPLANET.NET> > >> To: APERT@LISTSERV.AOL.COM > >> Subject: Surgery for EvaJessie > >> Date: Wednesday, May 27, 1998 11:39 AM > >> > >> Just got word yesterday that EvaJessie's tissue expansion will go ahead > >this > >> summer. We are working out the details for the twice weekly injections, > >but > >> we now know that the first surgery will take place June 10. So far we've > >> booked our flights to Vancouver and a stay at Easter Seal House. Now the > >> prep begins. > >> I'll start by getting rid of these butterflies in my stomach. > >> > >> Talk to you all soon. > >> Pat in Calgary > >> email to: bluenose@telusplanet.net > >> IM: onlypeach > >> shake and shake the ketchup bottle. none will come and then a lot'll .. > >unknown > > > > > email to: bluenose@telusplanet.net > IM: onlypeach > shake and shake the ketchup bottle. none will come and then a lot'll ... unknown ========================================================================= Date: Fri, 29 May 1998 22:18:59 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Laurie Bailey <jkb@ELPASO.NET> Subject: Illinois get-together MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit

Hey all!

Judy Amerman and myself have worked out a weekend in July to get together at Lake Shelbyville, Illinois. We are going to be there Friday, July 24; Saturday, July 25; and then leave on Sunday, July 26.

We know for sure it will be us and a girl from Iowa and probably the Jefferson's and possibly the new family I just met.

We wanted to open the invitation up to anyone else that wishes to come. We have reservations at Robin Hood Woods. There are cabins and such there. If you are interested, you should probably make your reservations soon. You can go to www.lakeshelbyville.com to see more on the area and get the number to many different lodging sites including Robin Hood Woods.

Laurie Bailey jkb@elpaso.net ========================================================================= Date: Fri, 29 May 1998 23:42:52 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: Lynn Thornquist <Thornq@AOL.COM> Subject: Re: Ankles.Feet Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Carol,

Unfortunately, the only thing that I experienced with Andrew is a tibial rotation outward. That started when he started to stand up by himself so we went to see an orthopedist recommended to us by our hand surgeon. He told us about the tibial rotation and said that it should fix itself when he finally starts walking. Well, sure enough, Andrew is now walking and it has straightened itself out.

The one thing he did check for was to make sure that it was not in his hips, which it wasn't. But you might want to think in that direction, because that is what my niece had (her feet pointed inwards) and my sister just had to buy corrective shoes and put her into activities that increased muscle tone and pointing her feet outward (rather than inward) like ballet.

Good luck with getting information and I hope I was of some help, but probably not since Andrews feet pointed outward.

Just my 2 cents.

Lynn ========================================================================= Date: Sat, 30 May 1998 08:28:20 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: Update Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

oops.....it may be a lobster. We were unable to keep any in their packaging...since Jordan has been such a miserable soul these past 2 weeks being restrained we have given most to him. The only exceptions..big Beanies and small alike..are the safari ones that go w/ his room. That may prove to be harder once hes older.

FYI..there was this guy here in Fl. that stole a case from the McD's where his girlfriend worked and put them on the blackmarket for $6.00 each. He got busted and is now in jail...SHEESH!!!!!!!! My mom and dad are on the lookout in Houston as well for any of the ones ya'll are missing.Unlike most, I don't think my dad has one bit of problem consuming extra value meals..although i am having concerns about the long term implications on his health!!!!! :)) We'll kepp ya updated on current finds!!!

Jenn(Tampa/St. Pete) ========================================================================= Date: Sat, 30 May 1998 08:34:32 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jennifer Graham <Jenngram@AOL.COM> Subject: Re: Nightmares? Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Janine,

we are having the same problem w/ Jordan (8mos) since his surgery. After 2 weeks of observation, I have come to the conclusion that his problem is that its hard to get settled once he wakes. This was never a problem..he too was always a terrific sleeper. He wakes and is fine for 20-30 min. I sneak in and hes playing..then he gets Po'ed b/c he can't get back to sleep. He'll almost be there..then he'll stir and start screaming. Some nights are better than others. I am at a loss...for ideas as well as sleep. We were up from 11-1..2-3:30..and from 5:00 on...Needless to say he tooo is tired and not fit to be around...as a matter a fact NO ONE in this house is fit to be around!!! The crying and whining are DEFINITLY taking a toll...Jordans too!!

Let me know if you come up w/ any ideas

Jenn(Tampa/st. Pete) ========================================================================= Date: Sat, 30 May 1998 11:22:20 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: Belinda Vicars <NephiRose@AOL.COM> Subject: Re: Nightmares? Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Janine,

I don't know about nightmares, but Sarah just recently (yesterday) came home from palate surgery. She also is not drinking much from a bottle (an ounce). I think maybe she has to relearn how to suck on a nipple now that her palate is closed and shaped differently before. Also, Sarah used to be terrified of anyone in white coats, so she needed to be reassured constantly. Imagine associating white coats with pain?.. (this was back when she was about 18 months old)...so maybe Emily is just realizing there are things a bit scary out there and just needs reassurance from her mom. By the way, Sarah this time around didn't freak out with someone wearing a white coat this time. So maybe she forgot. Hope this helps some.

Belinda ========================================================================= Date: Sat, 30 May 1998 10:59:48 -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: Joseph Chan <jchan7@PACBELL.NET> Subject: Re: Nightmares? MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

Belinda Vicars wrote:

> By the way, Sarah this time around didn't freak out with someone wearing a > white coat this time.

Took Roxy a long time to overcome things that she could associate with surgery: white coats, balloons, and vacuum cleaners (probably relates the tubing). It got harder as she became more aware and the frequency of surgeries didn't help. She'd start "freaking out" when we'd pull into the hospital parking lot. Now at nine years old (and surgery-free for the past two years, Yeah!), she's come a long way. Going in for her Orthodontist appointments, she'll walk in confidently and tell them what color bands she wants. Then she'll turn around, push the button to lower her own chair and say, "O.K., Dr. Moon, I'm ready!" Heavy SIGH! ========================================================================= Date: Sat, 30 May 1998 14:55:51 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "Christina R. Mathis" <ChMathis@AOL.COM> Subject: Re: Ankles.Feet Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Carol: Zoey's Mom here, I haven't checked my mail in a few days and that's why it's taken me so long to respond. Zoey is also a VERY flexible baby and has a similiar problem and I've been concerned also. She just doesn't look like she can walk on what she has, it looks uncomfortable. I also need to ask her doctor about it. She's 16 months old. If I find out anything, I'll share what I've heard. Christina San ANtonio ========================================================================= Date: Sat, 30 May 1998 21:49:46 +0000 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "J. G. Lindamood" <chanan8@JUNO.COM>

Hello Family!

Janine, it is amazing how our family is growing and especially with the ones we find by chance. I am sure the mother will be relieved to meet you and have your support.

Beanie Baby Alert: Yes, it is a lobster. I felt about stupid because I had been referring to it as a crab ever since day one! Duh! Sorry Don, no cats here.

My new job as an almost official Activity Coordinator (final in two weeks) has been very rewarding so far! My life motto is, if I can touch at least one person a day, I have met my purpose. I just need to learn I cannot pre-determine who that person will be and sometimes I am home and reading my e-mail before I find out. I am completely exhausted. We are under staffed (who isn't?) and I have been working six day weeks. Went from a job where I sat at a desk all day to giving tours to a large man in a wheel chair! Those ramps are tough (going up AND down! Hold on TIGHT!) I should be fit as a fiddle here in a week or so! The highlights of my week include Ice Cream Parties, Bingo, Cookie baking, Bingo, Movie Night, did I mention BINGO? These folks are Bingo enthusiasts! And by golly, don't touch their cards!

Well, the laundry fairy missed me again! I will need to speak to her manager. I need to fold or sleep on the couch!

Joanne, in Ohio It is HOT! Not to mention HUMID! ========================================================================= Date: Sat, 30 May 1998 21:55:02 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: Beth Tolson <ETolson643@AOL.COM> Subject: Re: Thanks to Christine! Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Christine We just received the copies of the pages from Dr. Upton's book. Yes, that is Tim. How did you know it was him?? Thanks so much for all of your efforts!!! Hope all is going well. I am thinking of you.

Beth ========================================================================= Date: Sun, 31 May 1998 10:49:38 -0400 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jack and Raquel <jara1@BELLSOUTH.NET> Subject: Welcome, Linda,Gary & Donald MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

Linda,

First of all I want to welcome you, Gary & Donald to the listserv. As I tell all the new families that join, you will find this a great place to be, the people in this new family are marvelous.

Let me introduce myself, my name is Raquel I have a wonderful husband Jack and four great children, Michelle 14, Steven 10, Erica 3.5 and Nicole 8 months born with Aperts.

Nicole is going to have her very first surgery (cranial vault remodoling and orbital advancement) next month June 11th, so we are pretty new at this and at this time will not be able to help you with your questions. But let me tell you someone else in this listserv will.

This listserv, well, its our daily therapy at least I call it that. So again welcome and hope to be hearing from you.

Raquel Miller in now much needed rainy south Florida.... ========================================================================= Date: Sun, 31 May 1998 11:33:29 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Resa and Mark Pace <Copperhd87@AOL.COM> Subject: Mitchell's home! (and I am too!) Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Dear all, Mitchell and I are finally home from St. Louis. He is recovering from his cranial reconstruction very nicely. We and the doctors are all pleased with the results. Dr. Marsh was not able to repair a hole left from his first surgery and a small surgery may be necessary later to fix that. But, it will be nothing like this one. Dr. Marsh said that he enlarged Mitchell's skull to the point where he had no leftover bone to use to repair the hole. He said that Mitchell's bone was too thin to split in half. He described the bone in the skull as an Oreo cookie--two hard outer layers and one soft inner layer. He expected to be able to have two for one from parts of Mitchell's skull, but ended up unable to do that. I have learned much more about the human body than I ever wanted to know, but I hope some of this information might help you.

Recovery in the hospital was a nightmare. Nothing happened that the doctors and nurses did not fully expect, but the swelling and suffering Mitchell went thru the first three days after surgery was almost unbearable to me. He swelled so much that he looked like a very fat little Chinese boy, not like my baby. All that is over now, and we are looking forward to his complete recovery.

Thank you for all the good wishes,

Resa ========================================================================= Date: Sun, 31 May 1998 11:37:00 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: Jennifer Graham <Jenngram@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

Glad ya'll are home, things went well, and just knowing the worst is behind you can be a big stress reliever. Best wishes for a continued speedy recovery.

Jenn(Tampa/St. Pete) ========================================================================= Date: Sun, 31 May 1998 11:46:51 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Resa and Mark Pace <Copperhd87@AOL.COM> Subject: Re: Nightmares Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Dear all, I was very worried about Mitchell having nightmares after surgery. He did have at least a week of very restless, disturbed sleep after surgery. Last night, our first night at home, was much better.

I tend to think that his waking up and crying has been due partially to pain, but also the just plain suffering that he went thru. I think he would wake up in the hospital, see his surroundings and anticipate something awful happening. It was helpful to him to sleep in the bed with me. The hospital actually changed his crib for and adult sized bed and we slept together, both at night, and naps during the day. He was constantly touching me, reaching out for me, and fingering my skin with his fingers, just to be sure I was there. Even when I thought he was 99% asleep, he would still be moving his fingers. I think he needed that extra reassurance, comfort, and love to relieve his stress.

The biggest help to us was music. Listening to familiar tapes really helped. When he would wake, I could turn on the tape player and he would relax to the point that we could both eventually get back to sleep. Our favorite is Linda Ronstadt's lullaby tape followed by a nature sounds tape and Nicollete Larson's lullaby tape. I think there were times that he was still awake but would just lay there listening to the music.

Good luck, Resa ========================================================================= Date: Sun, 31 May 1998 11:54:21 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: Resa and Mark Pace <Copperhd87@AOL.COM> Subject: Sniffles before surgery Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Dear all, Though Mitchell was diagnosed with pnuemonia a week before his surgery, we were able to proceed. He was checked by an anethesiologist two days before surgery and pronounced fit. This doctor said his philosophy was that if he waited until babies showed no signs of a cold that there would never be any surgery. He said as long as his lungs were OK, they could work around any other symptoms. Mitchell's remaining congestion did cause minor difficulties for him, but thank goodness, it was never anything serious. They had to suction him a couple of times and he had an oxygen mask while he was in the ICU. I'm not sure if that is unusual or not. Anyway, everything turned out OK.

Resa ========================================================================= Date: Sun, 31 May 1998 12:02:28 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Ize <ize@TACOMA.CEATLABS.OKSTATE.EDU> Subject: Re: Mitchell's home! (and I am too!) MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

Hi Resa,

It's so good to know that you are back home again. We wish Mitchell a speedy recovery!!!

Take care, The Ize's.

Resa and Mark Pace wrote: > > Dear all, > Mitchell and I are finally home from St. Louis. He is recovering from > his cranial reconstruction very nicely. We and the doctors are all pleased > with the results. > Dr. Marsh was not able to repair a hole left from his first surgery and a > small surgery may be necessary later to fix that. But, it will be nothing > like this one. Dr. Marsh said that he enlarged Mitchell's skull to the point > where he had no leftover bone to use to repair the hole. He said that > Mitchell's bone was too thin to split in half. He described the bone in the > skull as an Oreo cookie--two hard outer layers and one soft inner layer. He > expected to be able to have two for one from parts of Mitchell's skull, but > ended up unable to do that. I have learned much more about the human body > than I ever wanted to know, but I hope some of this information might help > you. > > Recovery in the hospital was a nightmare. Nothing happened that the > doctors and nurses did not fully expect, but the swelling and suffering > Mitchell went thru the first three days after surgery was almost unbearable to > me. He swelled so much that he looked like a very fat little Chinese boy, not > like my baby. All that is over now, and we are looking forward to his > complete recovery. > > Thank you for all the good wishes, > > Resa ========================================================================= Date: Sun, 31 May 1998 13:58:11 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: Nightmares? Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Janine-

We went through the same thing for several weeks following Jonathan's last cranial surgery. He did finally stop waking during the night screaming. I really think it has to do with the traumatic stuff they go through with these big surgeries and overnite hospital stays. We haven't had any problems from his day hand surgeries. I wish you well. This too shall pass. I loved your story about the mom and apert child your husband met. We had a similar story here in Houston. It really is a great feeling when you can let someone else know that they are not alone.

Best wishes

Brenda ========================================================================= Date: Sun, 31 May 1998 14:01:38 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "<George Siebert>" <GSieb91515@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--

So glad to hear everything went well. I know how awful it is seeing them so swollen and uncomfortable (to say the least). Fortunately, they do heal fast and bounce back to their old selves quickly. Jonathan took about a month. I'm so glad the surgery was successful and it sounds like the hospital was very accomodating. That definately helps with the stress we go through during that time. I wish I had of thought of switching cribs for a bed. It would have made life much easier for us. I ended up putting him on the pull out chair bed with me and that was NOT any fun. Anyway, welcome home.

Brenda ========================================================================= Date: Sun, 31 May 1998 16:14:46 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: "<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 Sears--

I have a Zip the black cat beanie for you. Let me know how you want me to send it. If you have already gotten what you need just let me know that too. I still need a Dobie and also a Scoop if you guys have any extra.

Brenda Siebert ========================================================================= Date: Sun, 31 May 1998 16:20:54 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "<George Siebert>" <GSieb91515@AOL.COM> Subject: Photo Exchange Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

We have received in the last two weeks the following adorable photos:

Kayla Smith, Felipe and Rafael Ize, Colin Linch, Andrea Gartner and Zoey Mathis. They are all beautiful and we wish we could give a big hug to everyone. I have sent out 4 more photos of Jonathan for a total of 50 so far. Does anyone have the final count? I don't want to leave anyone out that has requested to exchange.

Brenda Houston ========================================================================= Date: Sun, 31 May 1998 17:10:20 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: Janine Krebs <Yonstein@AOL.COM> Subject: Re: Mitchell's home and Sarah's recovery Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Welcome home to Mitchell and Mom. Hope the recovery goes well for you.

Also to Sarah, glad that you're home from your surgery also. Hoping your recovery goes well for you, too.

To Krista and Jonathan, I know both are scheduled this week for surgery. Hope all goes well for both of you and any one else I missed this week.

Emily is doing better at feedings and also sleeping at night. She's only waking up once a night now. Yes, we did have her on paid med the first week, especially at night. Seems to be healing better, though.

Hope all is well with everyone.

Janine P.S. Can't wait for Emily's page. (Hint, hint!) ========================================================================= Date: Sun, 31 May 1998 17:59:57 -0400 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jack and Raquel <jara1@BELLSOUTH.NET> Subject: Home at last... MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

Resa,

I'm glad to hear that Mitchell is home and recovering from his surgery. You guys must be exhausted....

Well, we are less than two weeks away from Nicole's cranial surgery and yes she has another cold. This time we could not avoid it everyone at home is sick including myself. We still have time to get over our sniffels her surgery is for June 11th. But again we have left it in Gods hands. The surgery was cancelled last month because of a cold, but I tend to agree with your anesthesiologist if you wait for a clear nose (it ain't ever gonna happen).

Well, I'll keep you all updated.....

Raquel Miller..... ========================================================================= Date: Sun, 31 May 1998 18:13:02 -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: NIGHTMARES/beanies MIME-version: 1.0 Content-type: text/plain; charset="us-ascii"

Daryl has had nightmares of and on since his shunt surgery. I wasn't sure if that was what it was but now, after two years I can tell that is what they are. When he was a baby he would scream and I was in a panic worrying if something was wrong or if he was scared. Now that he is older and I have layed down with him some nights and he would wake up in a jolt and start screaming. He was even scared of me once or twice until he realized it was I was mommy. I just console him and give him a drink. I try not to rock him now, because it takes longer to get him back to sleep. If I stand up he wakes up! I tell him, I am here, you are O.K., and I ask him if he wants me to lay down with him. He will always shake his head yes and we lay down and he will drift off. I do notice that after a nightmare, he continues to whine in his sleep for an hour or two, but then he seems to sleep comfortably. Sorry to ramble! God Bless!

P.S. Sorry Don, Nikita has all of the Beanie's large and small, but she can't bring herself to part with them. The market is going to plumit and we are all going to be sitting in a house full of cute, worthless bean bags!Ha...Ha...

Denise Graham ========================================================================= Date: Sun, 31 May 1998 22:06:34 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Judy Amerman <jamerman@UTI.COM> Subject: Just a reminder MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit

Hi all, This is just to reminder that we are having a get togother July 24 and 25 in Shelbyville Illinois. So far it is the Jeffersons, the Baileys, Beth Oppelt from Iowa, she has apert's and has never met anyone else with apert's. I am really excited to meet her and the Jefferson's. And Nick and myself. I have already met the Baileys and we are already like family. We will be staying at Robinhood Woods Campground. If you want to go and stay where we are staying, you will need to reserve your room now. They only have 2 log cabins and 4 cottages and I know that we have already taken up 3 of them. They also have the campground if you have a camper. They have an inground pool, and a playground for the kids. It appears that ther is not really anywhere thaere that is directly on the lake. But there are several hotels and othe resorts and campgrounds. There are also several beaches that can be driven to. If anyone else is interested, just get in touch with any of us going and let us know. Hope to see you soon. Judy ========================================================================= Date: Sun, 31 May 1998 22:18:03 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "Allison's : GO USA, Inc" <gousa@KC.NET> Subject: Colds and Surgeries In-Reply-To: <3571D2DD.261@bellsouth.net> Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

Hi Everyone!

Having been through ten surgeries, we take Shawn to his pediatrician two weeks before the surgery.

If he has any sign of a sinus or ear infection, she puts him on an antibiotic.

So far, by the grace of God, he has never had a cancelled surgery because of a cold or congestion.

It seemed like he was always to sick to go to surgery, but about 10 days before, things would start to clear up and he would be ready to go by the surgery date.

This info may not be for everyone, but I hope it helps a few.

Your Friend!

Mike ========================================================================= Date: Sun, 31 May 1998 20:32:27 -0700 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Robyn Johnston <robyn@ORDATA.COM> Subject: Re: Nightmares Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

Yeah Mitchell! Way to go little guy! Hopefully you will be feeling back to your normal self soon!

Resa, Brenna was really swollen for 3 days too. It does go away pretty quickly, thank goodness. I always seemed to be more affected from Brenna's surgeries than her. It was hard on me too. :-(

>It was helpful to him to sleep in the bed with me. The hospital >actually changed his crib for and adult sized bed and we slept together, both >at night, and naps during the day. He was constantly touching me, reaching >out for me, and fingering my skin with his fingers, just to be sure I was >there. Even when I thought he was 99% asleep, he would still be moving his >fingers. I think he needed that extra reassurance, comfort, and love to >relieve his stress. > Resa - what a wonderful idea! I will have to keep this in the back of my head for the future. I bet the little bit of extra reassurance that mommy was right by his side really helped Mitchell know that he was ok - even though he was still in some pain.

Good luck with everything! Hugs, Robyn J.

At 11:46 AM 5/31/98 EDT, you wrote: >Dear all, > I was very worried about Mitchell having nightmares after surgery. He >did have at least a week of very restless, disturbed sleep after surgery. >Last night, our first night at home, was much better. > > I tend to think that his waking up and crying has been due partially to >pain, but also the just plain suffering that he went thru. I think he would >wake up in the hospital, see his surroundings and anticipate something awful >happening. It was helpful to him to sleep in the bed with me. The hospital >actually changed his crib for and adult sized bed and we slept together, both >at night, and naps during the day. He was constantly touching me, reaching >out for me, and fingering my skin with his fingers, just to be sure I was >there. Even when I thought he was 99% asleep, he would still be moving his >fingers. I think he needed that extra reassurance, comfort, and love to >relieve his stress. > > The biggest help to us was music. Listening to familiar tapes really >helped. When he would wake, I could turn on the tape player and he would >relax to the point that we could both eventually get back to sleep. Our >favorite is Linda Ronstadt's lullaby tape followed by a nature sounds tape and >Nicollete Larson's lullaby tape. I think there were times that he was still >awake but would just lay there listening to the music. > > Good luck, >Resa >