========================================================================= Date: Thu, 22 Jan 1998 19:08:20 +1300 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial 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: shots etc Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

Happy New Year to all

Back in "civilisation" and know where I would prefer to be! Still finding my way through the 300+ messages that have come through while we were away - I think I'm winning. There has certainly been lots happening and great to read of "our" new families - Welcome, welcome, welcome.

BJ - Belated Happy birthday wishes for your 11th year. How wonderful that you could all be together to celebrate. We're sure the cat will forgive you.

Jenn >I guess it just happened to coincide w/ shots. But to me..paronoid mom.. I've gone through a lot of "I told you so" scenarios, so my suggestion is to accept how you are feeling and do what feels right to get the information you need. Sometimes your supposed "paranoia" will prove right and sometimes it won't, but don't fight it as you will just end up worrying yourself even more. And let the men laugh!!

Surgeries Our best wishes to you all who are going through this very challenging time.

Amy is in her fifth and final week of her holidays and it really is time she went back to school! She goes into Year 3 with her first male teacher, which she is quite excited about. Yesterday she bought herself a pink lacey see-through blouse - aaah! Pre teenage stuff already and she is not quite 7 years old! No, really, it is great to see her making clear choices about what she wants to wear, but it does mean her younger male cousins won't be getting her hand-me-downs for much longer. The funny thing was that when our friends came for dinner last night and their 8 year old daughter went into awe of the blouse because she has been trying to persuade her mother to buy her one, Amy promptly took it off and put on her plain yellow t-shirt! She knows what she wants, and she knows what she looks good in (sometimes anyway) but if anyone admires it off it comes.

Over and out.

Cheers Ann from hot, sunny and dry New Zealand ========================================================================= Date: Thu, 22 Jan 1998 19:08:25 +1300 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial 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: All That Head Stuff Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

Kia Ora

Jenn's comment -

>I know what you mean about worrying about every little thing...my nephew has a >longer head than usual (hes 6 mos) and over Christmas Joe and i kept saying >"man look at his head..I think his sagittal sutures may be fused..." We've >gone from normal to hyperconcerned as far as this stuff goes. And no, my >nephews head is probablly fine..we're just into head right now I guess.

hits home with me. We were in a shop yesterday and I was looking at a young child in a pushchair and the thought came to mind how I would check with her mum that she knew there was a LittleLimbs group. Then I realised the girl had her leg hooked up under her, it wan't missing. That could have been very embarrassing!!

Sometimes we are in danger of being too observant and knowing too much!

Cheers, Ann NZ ========================================================================= Date: Thu, 22 Jan 1998 09:09:15 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Unclbennie <Unclbennie@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Re: Thank you Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

In a message dated 98-01-21 22:15:41 EST, you write:

<< Hello, >> Michelle, I work with 125 kids with varying degrees of disabilitie, out of 125 kids 75 of them are school age, out of the 75, 70 of them are in regular classrooms, the other five spend part of their day mainstreamed into art, music, gym, and music. We have had experiences where the school calls us and will say, "we aren't sure if this child is appropriately placed in a regular classroom". We then ask for a staffing to be held immediately, and I mean within 5 working days. We then meet with the parent, the teacher, the principle and any teachers and therapists that have interaction with our kids. We discuss why they think the child should be moved, and address the issues that are affecting the child remaining in the classroom. Some of our kids have one on one aides, others are just assigned to the classroom aide who also helps other children.

It sounds like maybe some education for the school is in order, bring them articles, and offer to give the teachers who work with your daughter an inservice regarding Apert Syndrome, I have done that at schools and it increases their comfort level tremendously. The child I work with who has Apert, has a seizure disorder and is going to have some surgery on her face. The school got real nervous about it so I went and met with the teachers, the aide, and the principle and we talked about what she will need, their comfort level increased and they are working with this child alot better. They were afraid to transport her on the bus. Another child I work with has diabetes and the school wanted to put him in special ed, I went and did an inservice and he's in a regular classroom. Just remember, that just because the school develops an IEP for your child, you don't have to sign it!!! If you disagree, tell them tell them what parts you don't think are appropriate for your child, remember you are the parent and know your child better than anyone in the world. It can be very hard and intimidating when you meet with the school, bring someone with you. I've been at IEP's where the school staff all sit on one side of the table and the parent is on the other all by themselves. Kinda like being called to the principles office!! You don't have to sign the IEP right then, take it home, look at it and talk to others about the goals etc. If you have a good working relationship with your doctor, ask her (or him) to look at the IEP and give you some advice, if you have a therapist (PT, OT or Speech) that has worked with your child before have them look at it and give input. It takes a team effort to educate any child, and you and your child are very important parts of that team. Is your child comfortable in her current classroom? Do you think she is progressing at a rate that is appropriate for her?

The comment that I have made at IEP's is that this is "an Individual Education Plan" and the persons name on it is not mine or the teachers, it shouldn't be drawn up for my or the schools conveinence, it should meet the needs of the child in the least restrictive environment". Hope this helps and excuse my being long winded but appropriate education is near and dear to my heart. Good luck Karen ========================================================================= Date: Thu, 22 Jan 1998 15:43:13 -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: foster <foster@ICONTECH.COM> Subject: UP comming surgery Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

Hello to everyone,

Billy,s surgery is on Feb3rd and I still haven't found anyone who has had any surgery done at the hershey hospital. He is having orbitual cranial advancement. And will be having tubes in his ears. Any output from anyone would be helpful.Also I was wondering how long after the surgery it would be ok for him to continue his physical therepy? I'm not sure if the messages are getting through so someonee please write back so I can figure out what I'm doing wrong.

Thanks Karen ========================================================================= Date: Thu, 22 Jan 1998 16:13:21 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: RANGERJJC <RANGERJJC@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Re: UP comming surgery Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

I can help you find out info about hershey hospital. That would be the one in PA right? Also is your surgeon going to use the resorbable plating set Lactosorb? ========================================================================= Date: Thu, 22 Jan 1998 19:04:44 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: MHTeach102 <MHTeach102@AOL.COM> Organization: AOL (http://www.aol.com) Subject: An Update Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

A word from the ranch,

Wanted everyone to know that BJ is continuing to show great signs of improvement. He is able to sit up with support now for a few hours at a time. He is also following sights, sounds and objects with his eyes and beginning to follow with his head. His swallowing has improved enough for him to be able drink some fluids without the worry of chokeing. His pain seems to be milder each day, and he is slowly getting away from the pain meds. Hey guess what he stills has his love for music. Whenever Barney comes on he starts trying to tap his body to the beat. He has also used his electric wheelchair for the first time by himself. And the cat thought the toy truck was bad. So all in all we are doing great. I have to run, the nurse is due here any minute and I hope to go grocery shopping.(I have been told there are places outside this house, and must check it out). Going a little stir crazy, but doing good.

The Harmons

PS. anyone wnat to adopt a cat for a few months.

Marjorie ========================================================================= Date: Thu, 22 Jan 1998 20:34:25 +0000 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Comments: Authenticated sender is <jgibson2@POP.erols.com> From: Judy Gibson <jgibson2@EROLS.COM> Subject: Re: An Update In-Reply-To: <76672751.34c7dea1@aol.com> MIME-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7BIT

Marjorie, Sounds like BJ is really coming along! The cat will be fine -- at least it's getting plenty of exercise.

Judy ========================================================================= Date: Thu, 22 Jan 1998 20:37:04 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jenngram <Jenngram@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Re: An Update Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Marjorie,

Just wanted to send you a quick note to let ya know how happy we are that BJ is continuing to improve..we hope and pray this road continues and I am sure it will..Its past due!!!

Joe, Jennifer and Jordan Graham ========================================================================= Date: Thu, 22 Jan 1998 21:08:38 +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 All!

A quick note... don't know anything about the interview I had last week. I called once to follow up and was told they had another interview and would make a decision then.. I have the option to renew my VISTA for an indefinite period of time, which helps, but I need to be making more money. Thanks to everyone for "listening".

Joanne in Ohio ========================================================================= Date: Thu, 23 Jan 1997 06:59:08 -0800 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial 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@MCI2000.COM> Subject: Newsletter In-Reply-To: <34C3B0E3.3BF9@ix.netcom.com> MIME-version: 1.0 Content-type: text/plain; X-MAPIextension=.TXT; charset=US-ASCII Content-transfer-encoding: 7bit

Christine.

I would like to get on your mailing list, but i have deleted the letter with the info on how to do it. Will you please email me and tell me how to do it?

Thanks

Rachel longshot.darwin@mci2000.com ========================================================================= Date: Fri, 23 Jan 1998 08:03:46 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jenngram <Jenngram@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Re: Job Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Good luck w/ the job Joanne, and I hear you and echo you on the more money issue..why is it employers never realize how much we are worth??? Our thoughts are w/ you..we'll keep our fingers crossed

Jenn (St. Pete..monsoon country once again) ========================================================================= Date: Fri, 23 Jan 1998 13:20:00 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Yonstein <Yonstein@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Re: An Update Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Marjorie:

So glad to hear things are improving. It's obvious you are feeling a little bit more rested also, which is important.

Our thoughts continue to be with you and your family that the progress will continue.

The Krebs Family ========================================================================= Date: Fri, 23 Jan 1998 15:21:01 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: foster <foster@ICONTECH.COM> Subject: Billy's surgeons Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

Hello to everyone,hope all is well. Ranger JJC wrote yesterday that he or she (I'm not sure of first name) could help me find out about Hershey for us. I wanted to give some more details. The doctors who in charge of the surgery are:

Dr. Donald R. Mackay is the cranial surgeon and Dr. Paul Kanev is the Neurologist Yes the hospital in located in Hershey Pa. It is now called Penn State Geisinger-Milton S Hershey Med Center. I'm not sure about the Lactosorb but I will find out hopefully on Monday.

The time is going so fast I can only hope that the time he will be in the hospital will also go fast.

Our family is trying to get prepared for the surgery, but it is very hard.

I am starting to wake in the early hours and can't stop thinking about it.

Billy is doing new things everyday and we feel guilty because he has no idea what he's in for. We know it is better because he is a baby, But would give anything to spare him the pain. Thanks again for all the support.

KAREN ========================================================================= Date: Fri, 23 Jan 1998 13:05:38 -0800 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Penny Halverson <phalvers@U.WASHINGTON.EDU> Subject: IRC's Chat Tonite! 01/23/98 Comments: To: Crouzon Syndrome Support Group & Other Craniofacial Anomalies <crouzon@u.washington.edu> MIME-Version: 1.0 Content-Type: TEXT/PLAIN; charset=US-ASCII

Hi everyone!!!

Tonite is ApertCrouzon Chat Nite!! So let's get acquainted with each others. :-) Keep in mind that some people will show up alittle later than the time started. IRC Chat is OPEN ALL NITE so stay as long as you like. Please join us!!! :-)

Date To Meet On: Friday, January 23, 1998

IRC Server: ChatNet (Any locations)

Port Setting: 6667

Channel: #ApertCrouzon

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

In case 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. Be sure to follow the instructions on how to install it and the setup. Be sure to set the Port setting and add by typing the channel name called exactly like this: #ApertCrouzon .

To check out the mIRC Help Page for Windows 3.x and Windows 95 users at: http://people.delphi.com/kbranstetter/mirc1.html You can download mIRC 5.11 there.

For MAC Users: Please download IRCle at: http://www.amug.org/~ircle/

If anyone needs help or have questions on accessing the chat on ChatNet. please email to Kristi at either:

mailto:kristib@qni.com or mailto:kbranstetter@delphi.com

Or for a quicker assistance, you can reach Kristi on AOL IM (AOL Instant Messenger) and she will be available to assist you - see below:

Kristi's screen-name: LilOneB (anytimes)

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

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

Everyone is welcome!!!

Thanks and please join the fun!!!!

Hugs, Penny

http://www.earthlink.net/~hwy2heaven/

mailto:hwy2heaven@earthlink.net mailto:phalvers@u.washington.edu ========================================================================= Date: Fri, 23 Jan 1998 13:41:12 -0800 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Penny Halverson <phalvers@U.WASHINGTON.EDU> Subject: IRC's Chat Tonite! 01/23/98 (Corrected) Comments: To: Crouzon Syndrome Support Group & Other Craniofacial Anomalies <crouzon@u.washington.edu> MIME-Version: 1.0 Content-Type: TEXT/PLAIN; charset=US-ASCII

Hi again, I am resending this message again to due alittle error made that needed to be corrected. Please read the area about the mIRC Help below at a different site. Thanks.

Hi everyone!!!

Tonite is ApertCrouzon Chat Nite!! So let's get acquainted with each others. :-) Keep in mind that some people will show up alittle later than the time started. IRC Chat is OPEN ALL NITE so stay as long as you like. Please join us!!! :-)

Date To Meet On: Friday, January 23, 1998

IRC Server: ChatNet (Any locations)

Port Setting: 6667

Channel: #ApertCrouzon

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

In case 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. Be sure to follow the instructions on how to install it and the setup. Be sure to set the Port setting and add by typing the channel name called exactly like this: #ApertCrouzon .

To check out the mIRC Help Page for Windows 3.x and Windows 95 users at: http://www.qni.com/kristib/mirc1.html You can download mIRC 5.31 there.

For MAC Users: Please download IRCle at: http://www.amug.org/~ircle/

If anyone needs help or have questions on accessing the chat on ChatNet. please email to Kristi at either:

mailto:kristib@qni.com or mailto:kbranstetter@delphi.com

Or for a quicker assistance, you can reach Kristi on AOL IM (AOL Instant Messenger) and she will be available to assist you - see below:

Kristi's screen-name: LilOneB (anytimes)

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

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

Everyone is welcome!!!

Thanks and please join the fun!!!!

Hugs, Penny

http://www.earthlink.net/~hwy2heaven/

mailto:hwy2heaven@earthlink.net mailto:phalvers@u.washington.edu ========================================================================= Date: Fri, 23 Jan 1998 17:04:32 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Yonstein <Yonstein@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Job-Childcare Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Hi Everyone:

I am writing this more to vent than anything else. I am scheduled to go back to work in March so I am interviewing for childcare in my home. I had a woman call today inquiring and she was discussing the possibility of bringing her 3 year old to my home to watch my children. I was telling her about Emily having Apert, but that she didn't require any additional care during the day. I explained about her hands and feet being fused. She said that she didn't think it was a good idea because it would frighten her daughter.

I just said thank you and hung up the telephone. Afterwards, I kind of got the feeling that maybe it would frighten the mother and she couldn't deal with it. I guess it's going to take me a long time to get used to people, if I ever will.

Anyway, this is probably going to be the hardest part of going back to work. I am lucky that I get to go back to a job share, working 2 days one week and 3 days the next.

I do have a woman scheduled for an interview, who is a grandmother, recommended by my son's nursery school teacher. She sounds like a good possibility. Wish me luck with her for the weekend.

Anyway, thanks for listening.

Hope all is well with everyone and you all have a good weekend.

Janine (in rainy, windy, cold NY) ========================================================================= Date: Fri, 23 Jan 1998 16:10:58 -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: baconsmith <bluenose@TELUSPLANET.NET> Subject: pain management//surgery prep (was Billy's surgeons) Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

Dear Karen. My little girl has been thru seven generals, only three of them were for 'major' procedures. Her earliest was at three weeks, the most recent was four years, and it was also the most involved surgery.

For pain management, she was kept on a morphine infusion for three days. And she seemed to be comfortable most of the time. After she was discharged she refused most pain meds but I was finally able to get her to take tylenol for a couple of days. Her biggest issue was that her staples itched, so the nurses gave me some polysporin ointment and some saline solution to clean and swab them with. Her pillow cases were pretty yucky every morning but I think the polysporin reallyhelped lubricate them and helped keep her comfortable.

A note: children's hospitals really do know how to manage pain for these little duffers.

In preparing for surgery, I did a lot of research and spent a lot of time learning about the ins and outs of the procedure itself. I knew exactly what the surgeon was going to do. I talked via the internet to a lot of people who had been thru surgeries like this. Much of the help I received came from this list.

I asked a lot of questions like, how long did it take? What did the child look like immediately post op? i asked questions about blood banking. Because she donated her own blood, we spent a lot of time together doing that and the weekly needle sticks to check her hemoglobin count. So we had a lot of time to go thru other procedures. For a four year old, she was pretty amazing and was right "there" with me.

I also checked out some of the 'softer' side of surgery -- like using visualization to get me thru the tough times. I too felt guilty because, although she knew she was to have an operation, she had nooooo idea what that would be all about. How much can you really tell a 4 yo. So, I picked an image that I could really get into -- mine was watching her and her brother run after the ducks in Stanley Park (in Vancovuer where the surgery was to occur). The sun was shining and there was dew on the grass, and I could almost smell the ocean in the air. I made myself concentrate on that image a lot during the weeks leading up to her surgery.

I also read a book by Dr. Bernie Siegel called Love, Medicine and Miracles. It was written about exceptional cancer patients, but it very much had to do with holding a positive outlook. One of the things that really caught my attention was the idea of unconscious awareness -- the idea that even while we are under a general anesthetic, we can hear others talking to us and understand the words. I know it may seem pretty far fetched, but it was really important to me that all the people in the OR understand that this was my little girl and not simply an orbit being advanced. So, I talked to her surgeon and the anesthesiologist and the nurses who were going to be assisting the surgeon and taold them all a few things about her -- things she likes, the name of her bear that went with her to surgery (Petunia), that she enjoys music, that her nickname was Peach. And I asked everyone of them directly to be sure that they spoke to her during the surgery and told her waht a strong little girl she was and how well she was doing and other positive things.

you know, not one of them looked at me as tho i had lost it. They all seemed more than happy to do that -- and that in itself gave me a great deal of peace during the surgery itself.

Of course, the other thing that made a huge difference is that we have been with the same surgeon since she was born, so he knows us and he knows her and cares for her very much.

While she was in surgery, I took many of her photos wiht me and began (finally) putting theminto an album. It gave a chance to focus on her and send positive thoughts to her while she was in the OR. And it helped me stay connected to her because I was busy examining that little face that I love so much.

During the run up to the surgery, I also was careful to monitor our diet at home. I knew we were in for some big time stress and so made sure to include lots of whole grain, B complex foods in most meals. I dont' know how much that really helped, but it made me feel that at least I was doing something positive for the whole outcome -- more like I was part of the process instead of a bystander helpless onthe sides.

Just a few ideas for you. Hope this goes well for your little guy.

Pat in Calgary, Canada.

>Our family is trying to get prepared for the surgery, but it is very hard. > >I am starting to wake in the early hours and can't stop thinking about it. > >Billy is doing new things everyday and we feel guilty because he has no idea >what he's in for. >We know it is better because he is a baby, But would give anything to spare >him the pain. Thanks again for all the support. > >KAREN > > email to: bluenose@telusplanet.net Your pain is the breaking of the shell that encloses your understanding ... The Prophet, by Kahlil Gibran, IM: onlypeach ========================================================================= Date: Fri, 23 Jan 1998 21:08:11 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: ETolson643 <ETolson643@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Re: pain management//surgery prep (was Billy's surgeons) Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Pat You had some great suggestions for getting ready for surgery. We, too, always found the time before the big day so stressful. I don't know that other people can truly understand the feeling unless they have been through it themselves. Tim has had about 13(?) surgeries. He is sixteen now and we are trying to involve him in the ultimate decision of whether or not to have a surgery. His last surgery was long (17 hrs) and involved. He was on a morphine pump for 3-4 days in the ICU. He then went to a floor for another week. He progressed nicely with no unexpected problems. Tom (Tim's Dad) or I stayed with him during the entire stay and this definitely helped with his anxiety levels. The stress on us all was tough and we were so happy to have him home. I liked your visualization techniques and will certainly try them out. Good luck to Karen and Bill. Our thoughts are with you.

Beth Boston ========================================================================= Date: Fri, 23 Jan 1998 21:56:14 -0800 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Robin MacDonald <macdonal@GOLDEN.NET> Subject: sitters etc. MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

Keep looking! We have had nothing but great success in finding both qualified and caring individuals to care for our daughter after school.

We first got connected with a service that specialized in care for special needs children. As our daughter got older, we kept in touch with a couple of these caregivers..and they continued with her and in one case, "adopted" her as one of their own.

You should feel almost relieved that you were able to weed out someone before you actually had your child with them for any length of time. Can you imagine the horror show that would result after discovering some six months later that they didn't like caring for your child.

Keep looking...the right person will show up! ========================================================================= Date: Sat, 24 Jan 1998 08:14:03 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jenngram <Jenngram@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Re: Billy's surgeons Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Karen,

I echo all of what you said about Billy..I feel the same way about Jordan's surgery (2-10-98). He seems so happy and smiley...not to mention my ole jabber jaw has returned. I look at him sometimes and it just breaks my heart b/c I know that his whole world is about to be turned upside down...ours as well..just when we got everything figured out!!! But....I get through it knowing what others here have stated as well as what our doctors have said, and that is these little guys recover so quickly and actually seem happier after. One thing our neurosurgeon toldus was that the incision on the scalp is the best place to have one b/c it doesn't cause pain when you move, talk, laugh, cry..like one on the stomach, chest or arm might. It was a good pont I hadn' t thought of. Anyway, as not to be my longwinded, verbose self...I guess we just have to remember how they will be better off down the road, and may even thank us one day, and no..they won't remember a darned thing..even though we'll be scarred for life!!!! Take Care, hang in there!!!

Jenn (St. Pete, Fl) ========================================================================= Date: Sat, 24 Jan 1998 08:26:36 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jenngram <Jenngram@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Re: Job-Childcare Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Janine,

Ahhh, I too am on the hunt for childcare..not for work, YET, but just a few hrs. a few times a week..a sanity break so to speak..Anyway, my developmental physician got in tough w/ a group(I think the United Cerebral Palsy Foundation or something) that specializes in finding childcare for parent w/ children w/ differences. whether it be out of the home or in the home, and also taking the level of assistance thats needed. Now, I talked to one of the social workers from that office and she told me that they check on hte kids 2 x week for the 1st 6 weks and then 1 x week thereafter to make sure all is ok and everyone is comftorable..their services are free (payed for w/ our tax dollars)..the childcare I'm sure isn't. But there may be an option like that in NY you could check into..We opted to have Jordan go to a daycare b/c we felt he would develop better w/ other kids, and we have no others to provide that and don't have any friends w/ other kids in our area..but she told me they can find "at home" care also. I meet w/ them on Tues to find out more aboutthe details and I'll pass them along. One note, i thought i'd be all ready for Jordan to "hit the road" for a few hrs..well, after she called I got kinda all motherly freaked out about turning him over to someone. It really shocked me..although Joe doesn't know why sonce I won't take the dog to any vet except the one in New Orleans, won't board him, and won't fly w/ him..mat cause traumatic-stress syndrome ya know. Anyway, I am a little sad at the prospect of someone else taking care of Jordan..even for a little while. Guess I"ll get used to it.

Anyway, I'll fill you in if I find out any more. But it may be worth checking into.

Jenn (Sunny, high today of 70, St. Pete..) ========================================================================= Date: Sat, 24 Jan 1998 18:42:22 -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: Kerri Hedinger <khedinger@NS.GEMLINK.COM> Subject: Re: Billy's surgeons MIME-Version: 1.0 Content-Type: text/plain; charset="iso-8859-1" Content-Transfer-Encoding: 7bit

Jenn

Ditto!! I imagine that the butterflies are fluttering about in your stomach as well. Devin is scheduled for his surgery 2-5-98 and the closer I get the more reality is setting in! I try not to let it get the best of me but sometimes my mind won't comprehend it all. I have said before that this little guy may hate me by the time he is a teenager but i'm sure he will thank me as an adult. I keep focusing on the end result instead of the steps in between. Trying to see it any other way for me is totally exhausting. There are times I want to cry but I ask God each day to give me the strenght to be whole so I can stand firm to be Devin's advocate. It is heartbreaking and scarey. I do have my momemts (more moments sometimes than I like to admit!)

IWell I've rambled on enough. But boy it really feels good to get that off my chest!!

Jenn--Wishing luck to you with Jordans upcoming surgery.

Kerri & Devin -----Original Message----- From: Jenngram <Jenngram@AOL.COM> To: APERT@LISTSERV.AOL.COM <APERT@LISTSERV.AOL.COM> Date: Saturday, January 24, 1998 4:22 AM Subject: Re: Billy's surgeons

> Karen, > >I echo all of what you said about Billy..I feel the same way about Jordan's >surgery (2-10-98). He seems so happy and smiley...not to mention my ole jabber >jaw has returned. I look at him sometimes and it just breaks my heart b/c I >know that his whole world is about to be turned upside down...ours as >well..just when we got everything figured out!!! But....I get through it >knowing what others here have stated as well as what our doctors have said, >and that is these little guys recover so quickly and actually seem happier >after. One thing our neurosurgeon toldus was that the incision on the scalp is >the best place to have one b/c it doesn't cause pain when you move, talk, >laugh, cry..like one on the stomach, chest or arm might. It was a good pont I >hadn' t thought of. Anyway, as not to be my longwinded, verbose self...I guess >we just have to remember how they will be better off down the road, and may >even thank us one day, and no..they won't remember a darned thing..even though >we'll be scarred for life!!!! Take Care, hang in there!!! > >Jenn (St. Pete, Fl) > ========================================================================= Date: Sat, 24 Jan 1998 18:03:14 -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: "Judith V. Parks" <jvparks@MIDAMER.NET> Subject: greeting MIME-Version: 1.0 Content-Type: multipart/alternative; boundary="----=_NextPart_000_001A_01BD28F2.5777AF20"

This is a multi-part message in MIME format.

------=_NextPart_000_001A_01BD28F2.5777AF20 Content-Type: text/plain; charset="iso-8859-1" Content-Transfer-Encoding: quoted-printable

SAT. JAN 24 1998 HI EVERYONE, WE ARE NEW TO THE LIST SERV. GLAD TO BE A PART OF IT. ARE SON HAS APERT, HE WAS BORN ON 9/30/97. NO SURGERIES YET. STILL LOOKING FOR THE RIGHT DOCTORS. =20 SHANNON, LORI & LEVI=20

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<!DOCTYPE HTML PUBLIC "-//W3C//DTD W3 HTML//EN"> <HTML> <HEAD>

<META content=3Dtext/html;charset=3Diso-8859-1 = http-equiv=3DContent-Type> <META content=3D'"MSHTML 4.71.1712.3"' name=3DGENERATOR> </HEAD> <BODY bgColor=3D#ffffff> <DIV><FONT color=3D#000000 face=3D"Times New Roman"=20 size=3D2>&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp; <FONT size=3D4>SAT. JAN 24 =

1998</FONT></FONT></DIV> <DIV><FONT color=3D#000000 face=3D"Times New Roman" size=3D2><FONT = size=3D4>&nbsp; HI=20 EVERYONE,</FONT></FONT></DIV> <DIV><FONT color=3D#000000 face=3D"Times New Roman" size=3D2><FONT = size=3D4>WE ARE NEW=20 TO THE LIST SERV. GLAD TO BE A PART</FONT></FONT></DIV> <DIV><FONT color=3D#000000 face=3D"Times New Roman" size=3D2><FONT = size=3D4>OF IT.&nbsp;=20 ARE SON HAS APERT, HE WAS BORN ON 9/30/97.</FONT></FONT></DIV> <DIV><FONT color=3D#000000 face=3D"Times New Roman" size=3D2><FONT = size=3D4>NO SURGERIES=20 YET.&nbsp; STILL LOOKING FOR THE RIGHT</FONT></FONT></DIV> <DIV><FONT color=3D#000000 face=3D"Times New Roman" size=3D2><FONT=20 size=3D4>DOCTORS.</FONT></FONT></DIV> <DIV><FONT color=3D#000000 face=3D"Times New Roman" size=3D2><FONT=20 size=3D4>&nbsp;&nbsp;&nbsp;&nbsp; </FONT></FONT></DIV> <DIV><FONT color=3D#000000 face=3D"Times New Roman" size=3D2><FONT=20 size=3D4>&nbsp;&nbsp;&nbsp;&nbsp;&nbsp; SHANNON, LORI &amp; LEVI=20 </FONT></FONT></DIV></BODY></HTML>

------=_NextPart_000_001A_01BD28F2.5777AF20-- ========================================================================= Date: Sat, 24 Jan 1998 17:37:30 -0700 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: baconsmith <bluenose@TELUSPLANET.NET> Subject: Re: Billy's surgeons Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

Hi, just a quick note to let you know that there are pic of Peach's orbital surgery (nto the surgery itself, but the swelling etc), up on the web. Here's the URL so you can take a look -- it may help prepare you for what your little ones will look like for those few days post op.

http://www.widesmiles.org/gallery/peach/ps.htm

Hope it helps you.

We'll be thinking of Jordan and Billy as they muscle their way thru these procedures.

Pat in Calgary

> Karen, > >I echo all of what you said about Billy..I feel the same way about Jordan's >surgery (2-10-98). He seems so happy and smiley...not to mention my ole jabber >jaw has returned. I look at him sometimes and it just breaks my heart b/c I >know that his whole world is about to be turned upside down...ours as >well..just when we got everything figured out!!! But....I get through it >knowing what others here have stated as well as what our doctors have said, >and that is these little guys recover so quickly and actually seem happier >after. One thing our neurosurgeon toldus was that the incision on the scalp is >the best place to have one b/c it doesn't cause pain when you move, talk, >laugh, cry..like one on the stomach, chest or arm might. It was a good pont I >hadn' t thought of. Anyway, as not to be my longwinded, verbose self...I guess >we just have to remember how they will be better off down the road, and may >even thank us one day, and no..they won't remember a darned thing..even though >we'll be scarred for life!!!! Take Care, hang in there!!! > >Jenn (St. Pete, Fl) > > email to: bluenose@telusplanet.net Your pain is the breaking of the shell that encloses your understanding ... The Prophet, by Kahlil Gibran, IM: onlypeach ========================================================================= Date: Sat, 24 Jan 1998 20:22:26 -0400 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Kerri Hedinger <khedinger@NS.GEMLINK.COM> Subject: Re: greeting MIME-Version: 1.0 Content-Type: multipart/alternative; boundary="----=_NextPart_000_0018_01BD2905.CA6A95C0"

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Hello from Kerri, Devin, Tyler and Erin,

My son Devin was born 04-08-97 with Apert's. He has had a few = surgeries. We have Dr. Larry Sargent and Dr. Timothy Strait in = Chattanooga, TN. at Erlanger Hospital. They are wonderful!! I will be = in Chattanooga on 2-5-98 for a cranial surgery. Terri Farmer spoke to = me yesterday re: another family coming while we are to be there. I = thought she said the families name was Parks. Is this you? =20 If so I would like to try to meet with you at some point during our = stay.

Welcome to all!!!! K,D,T & E

-----Original Message----- From: Judith V. Parks <jvparks@MIDAMER.NET> To: APERT@LISTSERV.AOL.COM <APERT@LISTSERV.AOL.COM> Date: Saturday, January 24, 1998 3:28 PM Subject: greeting =20 =20 SAT. JAN 24 1998 HI EVERYONE, WE ARE NEW TO THE LIST SERV. GLAD TO BE A PART OF IT. ARE SON HAS APERT, HE WAS BORN ON 9/30/97. NO SURGERIES YET. STILL LOOKING FOR THE RIGHT DOCTORS. =20 SHANNON, LORI & LEVI=20

------=_NextPart_000_0018_01BD2905.CA6A95C0 Content-Type: text/html; charset="iso-8859-1" Content-Transfer-Encoding: quoted-printable

<!DOCTYPE HTML PUBLIC "-//W3C//DTD W3 HTML//EN"> <HTML> <HEAD>

<META content=3Dtext/html;charset=3Diso-8859-1 = http-equiv=3DContent-Type><!DOCTYPE HTML PUBLIC "-//W3C//DTD W3 = HTML//EN"> <META content=3D'"MSHTML 4.72.2106.6"' name=3DGENERATOR> </HEAD> <BODY bgColor=3D#ffffff> <DIV><FONT color=3D#000000 size=3D2>Hello from Kerri, Devin, Tyler and=20 Erin,</FONT></DIV> <DIV><FONT color=3D#000000 size=3D2></FONT>&nbsp;</DIV> <DIV><FONT size=3D2>My son Devin was born 04-08-97 with Apert's.&nbsp; = He has had=20 a few surgeries.&nbsp; We have Dr. Larry Sargent and Dr. Timothy Strait = in=20 Chattanooga, TN.&nbsp; at Erlanger Hospital.&nbsp; They are = wonderful!!&nbsp; I=20 will be in Chattanooga on 2-5-98 for a cranial surgery.&nbsp; Terri = Farmer spoke=20 to me yesterday re: another family coming while we are to be = there.&nbsp; I=20 thought she said the families name was Parks.&nbsp; Is this you?&nbsp;=20 </FONT></DIV> <DIV><FONT size=3D2></FONT><FONT color=3D#000000 size=3D2>If so I would = like to try to=20 meet with you at some point during our stay.</FONT></DIV> <DIV><FONT color=3D#000000 size=3D2></FONT>&nbsp;</DIV> <DIV><FONT size=3D2>Welcome to all!!!!</FONT></DIV> <DIV><FONT size=3D2>K,D,T &amp; E</FONT></DIV> <DIV>&nbsp;</DIV> <BLOCKQUOTE=20 style=3D"BORDER-LEFT: #000000 solid 2px; MARGIN-LEFT: 5px; PADDING-LEFT: = 5px"> <DIV><FONT face=3DArial size=3D2><B>-----Original = Message-----</B><BR><B>From:=20 </B>Judith V. Parks &lt;<A=20 = href=3D"mailto:jvparks@MIDAMER.NET">jvparks@MIDAMER.NET</A>&gt;<BR><B>To:= =20 </B><A = href=3D"mailto:APERT@LISTSERV.AOL.COM">APERT@LISTSERV.AOL.COM</A>=20 &lt;<A=20 = href=3D"mailto:APERT@LISTSERV.AOL.COM">APERT@LISTSERV.AOL.COM</A>&gt;<BR>= <B>Date:=20 </B>Saturday, January 24, 1998 3:28 PM<BR><B>Subject:=20 </B>greeting<BR><BR></DIV></FONT> <DIV><FONT color=3D#000000 face=3D"Times New Roman"=20 size=3D2>&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp; <FONT size=3D4>SAT. = JAN 24=20 1998</FONT></FONT></DIV> <DIV><FONT color=3D#000000 face=3D"Times New Roman" size=3D2><FONT = size=3D4>&nbsp;=20 HI EVERYONE,</FONT></FONT></DIV> <DIV><FONT color=3D#000000 face=3D"Times New Roman" size=3D2><FONT = size=3D4>WE ARE=20 NEW TO THE LIST SERV. GLAD TO BE A PART</FONT></FONT></DIV> <DIV><FONT color=3D#000000 face=3D"Times New Roman" size=3D2><FONT = size=3D4>OF=20 IT.&nbsp; ARE SON HAS APERT, HE WAS BORN ON = 9/30/97.</FONT></FONT></DIV> <DIV><FONT color=3D#000000 face=3D"Times New Roman" size=3D2><FONT = size=3D4>NO=20 SURGERIES YET.&nbsp; STILL LOOKING FOR THE RIGHT</FONT></FONT></DIV> <DIV><FONT color=3D#000000 face=3D"Times New Roman" size=3D2><FONT=20 size=3D4>DOCTORS.</FONT></FONT></DIV> <DIV><FONT color=3D#000000 face=3D"Times New Roman" size=3D2><FONT=20 size=3D4>&nbsp;&nbsp;&nbsp;&nbsp; </FONT></FONT></DIV> <DIV><FONT color=3D#000000 face=3D"Times New Roman" size=3D2><FONT=20 size=3D4>&nbsp;&nbsp;&nbsp;&nbsp;&nbsp; SHANNON, LORI &amp; LEVI=20 </FONT></FONT></DIV></BLOCKQUOTE></BODY></HTML>

------=_NextPart_000_0018_01BD2905.CA6A95C0-- ========================================================================= Date: Sat, 24 Jan 1998 20:22:32 -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 surgery MIME-version: 1.0 Content-type: text/plain; charset="us-ascii"

Daryl had hand surgery Friday. He did fine and we just got home. I didn't have time to post it because I was fighting with our insurance all week. We have private insurance, but we get TennCare because of Daryl's disibility. The TennCare only helps with our medicines and therapy. They cut out Daryl's therapy, and others, without even a notice. I spent 5 days on the phone with Senators, Representatives, and the Govenor's office. We finally won a 60 day period of continued therapy. That gives me time to file a greivence and my doctor to file an expidited appeal. They want us to stop using our regular therapists and no homebound services. They told me that I had to come to whom they want me to use. That would mean changing therapists and programs. I told them that instead of me bending to meet their needs, that for once they would bend to meet mine!!!!

Anyway, this was Daryl's 4th hand surgery and we now have 3 fingers and a thumb on both hands. Even though we can't see the ones on the right hand yet. We have really had problems with keeping the thumbs from going back under his palm and fusing back together. It is almost like they fuse back immediatly. I am agressive in the dressings, but to no avail! Any suggestions or simular experiences?? Hope everyone is doing well.

Jenn, I will be thinking of Jordan on his surgery date. To all others that are facing surgery soon, Good luck! ========================================================================= Date: Sat, 24 Jan 1998 20:26:34 -0600 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Chad & Denise Graham <cgraham@INFOAVE.NET> Subject: Welcome MIME-version: 1.0 Content-type: text/plain; charset="us-ascii"

Lori,Shannon, & Levi,

Glad to see you are on the listserver. It was great talking with you the other day. I know that you strength will lead you in the right direction, no matter what path you choose. You will find all the support you will need here with these families. Everyone is just wonderful! Like I said before, call me anytime, collect!! God Bless!!

Denise Graham ========================================================================= Date: Sun, 25 Jan 1998 15:41:13 +1300 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial 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: Billy's surgeons Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

Hi Jenn

Great to hear "ole jabber jaw" is back.

Don't know about you but I have a quiet celebration when I have been concern about something and Amy proves me wrong.

Every best wish Ann New Zealand ========================================================================= Date: Sun, 25 Jan 1998 00:45:10 -0800 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Lark Jarvis <lark@INVOLVED.COM> Subject: Marjorie--HANDLE--"Using a Crazy Straw in the Treatment of Neurodevelopmental Disorders" Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

Marjorie, I thought of you and BJ today in particular at a seminar by Judith Bluestone, the director/founder of the HANDLE Institute (Holistic Approach to Neuro-Development and Learning Efficiency)--although I learned some very interesting things that could be useful to a wide range of people across the disability spectrum . . .(including myself!) HANDLE is located in Seattle, but they have trained people in various parts of the country, and have recently opened a clinic in Austin, TX. Their problem, now, is that they have outcome studies, lots of research, lots of case studies, but not much in the way of funding, just yet (although it will come, I'm sure . . . )

But, anyway, what made me think of you specifically was that in the course of her presentation, Judith mentioned a case involving a 32 yr old who had had encephalitis/meningitis, which had caused brain damage at age 4 months. She described in detail the progress she had made with him, after she encountered him at age 32, after he had had the best care that Seattle's rehabilitative medicine could provide. He was sent to her to treat for free--sort of a test case for her, if you will, since King County was interested in her methods, and wanted to see what she could do with a randomly selected case . . . Traditionally, age 32 is not a very hopeful age, after such an early injury of that type, and his functioning when she met him was such that he was not always feeding himself, would fall several times walking across a room--some serious impairment, in other words, but Judith described his having improved so much in such a short period of time that Social Security was threatening to take away his disability, he functioned so well . . . (they managed to keep that from happening, since obviously, he had not had the educational develpmental time, etc, while his functioning was impaired--he wasn't yet fit for the job market . . . )

She is a remarkable woman-was born with cranial anomalies (and had many reconstructions herself) due to her father's exposure to chemicals in his work as a research chemist. She has overcome a handful of labels, including PDD, autism, OCD, hyeractivity, failure to thrive, etc (except for two labels--gifted, and "oppositional defiant" <grin> Those stuck, for obvious reasons! ;~) I was EXTREMELY impressed with her--and I have a massage client with autism who has benefitted enormously from her excercises. Besides the institute in Seattle, she has trained people in her methods who now work out of a satellite clinic in Austin, TX (of all places!)--send me your snail mail, Marjorie, and I'd love to send you the info! Most of what HANDLE does is much, much gentler than the kinds of things that normal rehab would suggest, but according to Judith, it is more effective because it *doesn't* stress already weak parts of the holistic system, but instead gently enhances them. She has an extensive background in neurology, BTW,which adds scientific reasons to her practical methods . . . (research doesn't do anyone much good unless it can be put to work).

The following is a simple, yet profound excercise that's used with lots of HANDLE's clients--I am personally going to start using it, because I suspect that my inability to suck at birth (because of cleft palate) stopped my eyes from working together correctly . . . at least, I have always had problems with binocular vision . . . ) This exercise is also used a lot with brain injured clients, and those with light and/or sound sensitivities (for reasons, see below).

Anyway, space does not permit--I was SOOOO impressed with this woman's approach--she comes at brain injury/developmental disability from an amazing place, since she herself has overcome most of these obstacles somewhere along the way! The "gifted" label definitely fits--I got the sense that the connections she was making between brain research/neurology and pragmatic treatment are very, very briliant, if only the two fields would communicate more . . . .Check out their website at: http://www.handle.org for more info on the Austin program

Here's a sample of what I picked up-- -Here's an excercise that helps promote binocularity of the eyes, which is something that is normally developed early on in infants, as a result of the sucking mechanism . . . except in cases like cleft palate, where usually the instinct is there, but the mechanics to make sucking possible aren't. In brain injury, also, the sucking mechanism is often affected, or other aspects of neurology can be indirectly affected by stimulating the sucking reflex.

--Lark

From a hand-out published by the HANDLE Institute in Seattle, WA (HANDLE=Holistic Approach to Neuro-Developmental and Learning Efficiency) (Lark's note: I have a young massage client who's benefitted greatly from this little "nickel-trick"--greatly improved bowel/bladder control. HANDLE Institute is very good about letting (wanting) tricks like this be "passed around"--the only caution that Judith gave us today was, if someone's eyes are *crossed*, as opposed failing to converge, then this will not be the appropriate exercise, and can actually cause worsening of the problem. Instead, as would seem intuitively the case,*blowing* rather than sucking, through a straw, would then be the way to proceed (along with looking at a distant object, as the handout descibes . . .) I did not hear Judith say at today's seminar that there was any cut-off age at which this was no longer effective--it's used on brain injured patients of any age, I believe . . .)

BENEFITS: Drinking through a crazy straw can help to improve many functions frequently found to be weak in the clients who seek our assistance. 1) interhemispheric integration 2) binocular functions (how the eyes work together as a team) 3) light sensitivity 4) sound sensitivity 5) articulation 6) bowel and bladder control

No, this is not as strange as it sounds. When you examine the importance of sucking in human development, it is truly profound. Not only do we suck for nourishment, but in sucking we do many other amazing things. 1) We integrate the two sides of our mouth and cheeks and thereby stimulate the two cerebral hemispheres in a coordinated, rhythmic fashion. This enhances our interhemispheric intergration in general. We rely on interhemispheric integration to be able to process language, balance our instincts with logic, and so many other functions frequently compromised in brain injury. 2) As we suck, our trigeminal nerves are stimulated, and they in turn help regulate many aspects of our vision, including the ability of our eyes to converge--that is, focus together on a target. 3) One reason that people become light sensitive is that the two eyes do not team in their processing of the visual images, which of course is based on perception of light and darkness. Another is that the pupils have a reduced degree of their reactivity to light. Drinking through the straw enhances these functions. 4) Stimulation of the trigeminal nerve directly stimulates the nerves that service the ear, also. We are all familiar with how chewing gum or sucking on hard candy helps people tolerate the pressure change in their ears during take-off and landing on flights. 5) And a German physician, known affectionately by those she treats as "Dr. Paula," discovered that when we strengthen any set of sphincter muscles (such as the lips and also the esophagus) we stimulate all the sphincters in our body (such as the pupils of the eyes and the bowel and bladder, too.) MATERIALS: All you need is a crazy straw and a clear drink that the person enjoys. For some people whose ears are very sensitive, a regular straw should be used instead of a crazy straw, because you have to suck much harder through a crazy straw.

PROCEDURE: Encourage the patient to hold the straw in the center of his/her mouth, and to drink one or two drinks each day, slowly, and relaxing between sips. Do not encourage sucking of fluids if there is fear that the patient will aspirate the fluids. This patient can try to suck hard enough to create suction and to transfer an object from one place to another (e.g., the napkin from one side of the tray to another.)

If the individual's eyes tend to wanter or to turn out, rather than to converge, make sure that all drinking is done with eyes closed.

If the individual has a tendency or has a history of crossed-eyes, make sure that s/he looks at a distant object while drinking through the straw.

Don't forget to rinse the straw out very well after each drink, so harmful bacteria do not build up in the loops.

That's all there is to it, other than staying in touch with your health care providers and rehabilitation team so they can help you to assess the benefits you are achieving from this go-anywhere, non-obvious, even fun therapeutic activity.

PS For individuals who cannot suck now or may never have been able to suck, there are several activities that we have developed to help stimulate and strengthen the sucking reflex. Please feel free to contact the HANDLE Institute for help on this issue. ========================================================================= Date: Sun, 25 Jan 1998 07:57:45 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jenngram <Jenngram@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Re: greeting Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Welcome Shannon, Lori and Levi

My name is Jennifer Graham, and my son Jordan was born 9-18-97 w/ Apert. We are from the Tampa Bay area and have a wonderful group of doctors. Jordans 1st surgey is just arond the corner 2-10-98. Best of luck finding a group that fits your needs..there are many all over the country. And welcome to the list. I think you'll really like it here!!

Jennifer Graham (St. Petersburg, FL) ========================================================================= Date: Sun, 25 Jan 1998 09:21:44 +0000 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "J. G. Lindamood" <chanan8@JUNO.COM> Subject: Re: Daryl's surgery

Hello Everybody!

Congratulations to Daryl on a successful surgery. Hope the recovery period is a comfortable one!

I will be thinking of Jordan and Blake as they experience their surgeries. And to everyone else who is experiencing surgery or recently have, the best to you.

Joanne, in Ohio ========================================================================= Date: Sun, 25 Jan 1998 10:38:28 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Gaylann1 <Gaylann1@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Blake's Surgery Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Blake's surgery is Tuesday, January 27, 7:30 a.m. Mom, Dad, Blake and baby brother in Dallas now and are going down tomorrow. Big brother is staying here with his aunt.

I've been lurking and am aware of so many going through the same thing we are. The sleepless nights and worry. I like the suggestion of positive thinking and I need to get myself in that mode. Blake had complications with the second surgery of swelling behind the eyes and was in ICU for several days. So I guess when you know there can be trouble you are more anxious.

This is Blake's first surgery in Dallas so they are going through two days of preop. Their schedule is unbelievable. Doctors appointments back to back all day. He had an MRI and CT Scan Friday. Sonya said it was so much easier there compared to here because they sedated him with an oral medication. They did a sleep study Friday night. Tomorrow is another full day. So far nothing has occured that we are not already aware of.

I do think of all of you out there and you are in my prayers. These are stressful times for the entire family but you do what you have to do. I'm leaving tomorrow with a better outlook being able to talk to you. Sonya does not need a mother that can't be much help to her.

I talked to Blake yesterday and he is fine. He told me he slept at the hospital the night before and that he did not like Dallas! Blake is four like peach and he is aware of the surgery but not really what it means.

Good luck to everyone and will report when we get back.

Gaylann, Blake's Grandmother Cordova, Tennessee ========================================================================= Date: Sun, 25 Jan 1998 11:25:07 -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: baconsmith <bluenose@TELUSPLANET.NET> Subject: Re: Blake's Surgery Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

Gaylann, we'll be thinking of Blake on the 27th for sure. Peach was given an oral sedative called Midazolam (also goes by the name of Versed, I believe). She takes it fairly willingly. It really does help to relax her enough to take the mask. We are always allowed to go with her to the induction area. That also helps. Wish I could gie you more ideas to make it easier, but in the end, we all have to cope in whatever way we can manage.

Best to you and hugs to Blake, brave little boy and a trooper for sure.

Pat and the Peach email to: bluenose@telusplanet.net Your pain is the breaking of the shell that encloses your understanding ... The Prophet, by Kahlil Gibran, IM: onlypeach ========================================================================= Date: Sun, 25 Jan 1998 14:07:54 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Yonstein <Yonstein@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Re: Blake's Surgery Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Gaylan, Good luck to Blake on Tuesday for his surgery. Try to relax and keep up the faith. I'm sure all will go well for all of you.

We'll be thinking of you here in NY>

Janine ========================================================================= Date: Sun, 25 Jan 1998 15:38:41 -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: foster <foster@ICONTECH.COM> Subject: Blakes surgery Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

Gaylan, Our prayers are with Blake and all of your family. May God grant you the peace that only he can give.

Karen and Bill ========================================================================= Date: Sun, 25 Jan 1998 18:14:32 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jenngram <Jenngram@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Re: Blake's Surgery Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Best of luck to Blake..we'll be thinking of him these next few days!!

Also..glad Daryl's hand surgery went ok...every surgery is a stressful one..I know you're glad to have one more finished!!!

Jenn (St. Pete, FL) ========================================================================= Date: Sun, 25 Jan 1998 18:22:15 -0800 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial 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: pictures, glasses, etc Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

Hi all, we just got back from a week vacation so I am trying to catch up with all that is going on lately - whew!!!

Welcome all of the new members. This is a wonderful group of caring and supportive people.

Jenn Ha! we did the same thing (and still do) for Brenna's pictures. WE always order way to many! It is funny though, I always seem to give more away than I actully want to! Just proud mama's I suppose :-)

Hi Dan, Glad to hear that Zach is recovering well from his surgery. What a trooper! Brenna is doing better with her glasses, but, like Zach, they are falling down and pinching her nostrils in the worst way. WE have the wrap around ears and a homemade elastic and velcro strap. Next I am going to look for the one piece silicone nose rest for her. I hope this will help.

Hi Brenda, sorry to hear Jonathan took a little tumble last week. Scarey huh!! Brenna gave us a good scare after Christmas too. She fell off of the new playstructure/slide she got. Scared the bejeebers out of us!!!! to say the least. She was ok though. I kept hoping that her bones had healed enough from her surgeries to take the fall, and aparently they did! She was ok after a while - and a slug of tylenol. She did have quite a swollen knot on her head though. Thanks for the explanation about the total vault. Now it makes more sense.

Janine, regarding straps for glasses. I finally broke down and bought a piece of elastic - not quite 1/2 inch thick, about 14" long, cut it in half and sewed a small loop in the ends to put the glasses frame through. Then I sewed velcro to the other side of the straps so they stick together when you wrap them around the back of the head. I put the stickier (stiffer) part of the velcro facing away from her head so it wouldn't irritate her skin. This was kind of a last resort for us, as I had tried so many different "store bought" straps which did not work for us. most of them either did not stay on, were too loose or pulled her hair real bad. If you are not a sewer, I am sure someone would be more that happy to do it for you locally for a small fee. It did not take me very long to make and I am not much of a seamstress. The hardest part was going to the sewing store to buy the material. WE are looking into a one piece silicone nose piece next to help the glasses stay on her face.

Hope all is going well for everyone. Robyn & the Plum Very rainey, Eugene, OR ========================================================================= Date: Sun, 25 Jan 1998 18:22:16 -0800 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial 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: Job-Childcare Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

Jenn/Janine,

We have been through a whirlwind with childcare too this past almost 2 years. I tried to go back to work, but her developmental and medical needs were pretty overwhelming. Now my husband and I are trying to budget closely to enable me to stay at home during these most critical years to ensure she will continue to do well. I am taking a Leave of absence from my job to see if we can hopefully make it work.

Our most recent discovery was a local respite program that we qualified for. It is partially state funded, but we still pay a reasonable fee. Actually our early intervention coordinators suggested it after several other childcare situations flopped. Brenna had a lot of breathing/eating issues that made it really hard for regular childcare number ratio's. She doesn't get as much social interaction as I would like now, but at least I really trust the young lady who watches her.

I am not sure if you have anything in your areas like this but it would be worth trying to check. We are really happy with this setup. Goodluck and don't give up! There are good care providers out there. You just have to find ones you can trust. When our sitter comes over, Brenna runs to her wanting to play as well as asks for her when she leaves. So I know she is good.

Robyn Johnston Eugene, OR

At 08:26 AM 1/24/98 EST, you wrote: >Janine, > >Ahhh, I too am on the hunt for childcare..not for work, YET, but just a few >hrs. a few times a week..a sanity break so to speak..Anyway, my developmental >physician got in tough w/ a group(I think the United Cerebral Palsy Foundation >or something) that specializes in finding childcare for parent w/ children w/ >differences. whether it be out of the home or in the home, and also taking the >level of assistance thats needed. Now, I talked to one of the social workers >from that office and she told me that they check on hte kids 2 x week for the >1st 6 weks and then 1 x week thereafter to make sure all is ok and everyone is >comftorable..their services are free (payed for w/ our tax dollars)..the >childcare I'm sure isn't. But there may be an option like that in NY you could >check into..We opted to have Jordan go to a daycare b/c we felt he would >develop better w/ other kids, and we have no others to provide that and don't >have any friends w/ other kids in our area..but she told me they can find "at >home" care also. I meet w/ them on Tues to find out more aboutthe details and >I'll pass them along. One note, i thought i'd be all ready for Jordan to "hit >the road" for a few hrs..well, after she called I got kinda all motherly >freaked out about turning him over to someone. It really shocked me..although >Joe doesn't know why sonce I won't take the dog to any vet except the one in >New Orleans, won't board him, and won't fly w/ him..mat cause traumatic-stress >syndrome ya know. Anyway, I am a little sad at the prospect of someone else >taking care of Jordan..even for a little while. Guess I"ll get used to it. > >Anyway, I'll fill you in if I find out any more. But it may be worth checking >into. > >Jenn (Sunny, high today of 70, St. Pete..) > ========================================================================= Date: Sun, 25 Jan 1998 18:22:20 -0800 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial 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: Blake's Surgery Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

Gaylan,

Just wanted to wish you, Blake, Sonja and the rest of the family well wishes with his surgery. WE will send prayers you way on Tuesday for a successful surgery and a speedy recovery.

I want to tell you how much I look up to you for becoming so involved with your grandsons care. It touches my heart that you take so much time to understand and learn so much about him. You are truely special.

Take care, hugs, Robyn & the Plum ========================================================================= Date: Sun, 25 Jan 1998 20:26:34 -0600 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Chad & Denise Graham <cgraham@INFOAVE.NET> Subject: blake's surgery MIME-version: 1.0 Content-type: text/plain; charset="us-ascii"

Gaylann, Good luck on Blake's surgery on Tuesday. Tell Sonya that we will be thinking of them and sending our prayers their way. Maybe someday we can all get together and visit for a while. God bless!!

Denise Graham ========================================================================= Date: Sun, 25 Jan 1998 21:38:44 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Mark Smith <dsprado@PENN.COM> Subject: Upcoming days for Blake MIME-Version: 1.0 Content-Type: multipart/alternative; boundary="----=_NextPart_000_0035_01BD29D9.9CA2D100"

This is a multi-part message in MIME format.

------=_NextPart_000_0035_01BD29D9.9CA2D100 Content-Type: text/plain; charset="iso-8859-1" Content-Transfer-Encoding: quoted-printable

Dear Gaylan,

Best of luck to your grandson during this trying time. May the Lord = oversee the surgeons, and the nurses hands as they perform his surgery = and all the pre and post op procedures. We will be thinking of you all = week. Have a safe trip to and from Dallas.

Michele (PA) =20

------=_NextPart_000_0035_01BD29D9.9CA2D100 Content-Type: text/html; charset="iso-8859-1" Content-Transfer-Encoding: quoted-printable

<!DOCTYPE HTML PUBLIC "-//W3C//DTD W3 HTML//EN"> <HTML> <HEAD>

<META content=3Dtext/html;charset=3Diso-8859-1 = http-equiv=3DContent-Type> <META content=3D'"MSHTML 4.72.2106.6"' name=3DGENERATOR> </HEAD> <BODY bgColor=3D#ffffff> <DIV><FONT color=3D#000000 size=3D2>Dear Gaylan,</FONT></DIV> <DIV><FONT color=3D#000000 size=3D2></FONT>&nbsp;</DIV> <DIV><FONT color=3D#000000 size=3D2>Best of luck to your grandson during = this trying=20 time.&nbsp; May the Lord oversee the surgeons, and the nurses hands as = they=20 perform his surgery and all the pre and post op procedures.&nbsp;&nbsp; = We will=20 be thinking of you all week.&nbsp; Have a safe trip to and from=20 Dallas.</FONT></DIV> <DIV><FONT color=3D#000000 size=3D2></FONT>&nbsp;</DIV> <DIV><FONT color=3D#000000 size=3D2>Michele (PA)</FONT></DIV> <DIV><FONT color=3D#000000 size=3D2>&nbsp;</FONT></DIV></BODY></HTML>

------=_NextPart_000_0035_01BD29D9.9CA2D100-- ========================================================================= Date: Mon, 26 Jan 1998 07:35:35 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jenngram <Jenngram@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Fwd: fw:virus alert -forward Comments: To: Valdezman@aol.com, Jo5555@aol.com, MichelleFields@hotmail.com, Nolph@hotmail.com, KatieMcg@erols.com, tlee@selu.edu Mime-Version: 1.0 Content-type: multipart/mixed; boundary="part0_885818135_boundary"

This is a multi-part message in MIME format.

--part0_885818135_boundary Content-ID: <0_885818135@inet_out.mail.aol.com.1> Content-type: text/plain; charset=US-ASCII

Don't know if this is real or bogus, but just incase......

Jenn

--part0_885818135_boundary Content-ID: <0_885818135@inet_out.mail.aol.com.2> Content-type: message/rfc822 Content-transfer-encoding: 7bit Content-disposition: inline

Return-Path: <svsowens@neosoft.com> Received: from relay19.mail.aol.com (relay19.mail.aol.com [172.31.106.65]) by air11.mail.aol.com (v37.8) with SMTP; Sun, 25 Jan 1998 22:18:29 -0500 Received: from praline.no.neosoft.com (praline.no.NeoSoft.COM [206.27.160.253]) by relay19.mail.aol.com (8.8.5/8.8.5/AOL-4.0.0) with SMTP id WAA20747 for <jenngram@aol.com>; Sun, 25 Jan 1998 22:17:51 -0500 (EST) Received: (qmail 27548 invoked from network); 26 Jan 1998 03:17:49 -0000 Received: from unknown (HELO sabrina) (206.27.166.187) by praline.no.neosoft.com with SMTP; 26 Jan 1998 03:17:49 -0000 Message-ID: <34CC0017.6C2B@neosoft.com> Date: Sun, 25 Jan 1998 21:16:39 -0600 From: svsowens <svsowens@neosoft.com> X-Mailer: Mozilla 3.01 (Win95; I) To: rlowther@sprynet.com, rchbeul@claran.net, jvitrano@fit.edu, anna <werdivers2@AOL.COM>, betsy becker-ferrer <eabia@jazz.ucc.uno.edu>, bob chebul <rchbeul@clara.net>, brandon beyl <bbeyl@tiger.lsuiss.ocs.lsu.edu>, chalie and debbie <cgowder@vsta.com>, david tamburello <davidt@engr.latech.edu>, denise norris <dnorris@dsmd.dsmd.state.al.us>, edwin <edcarpenter@neosoft.com>, james vitrano <jvitrano@winnie.fit.edu>, "jennifer,joe jordan" <jenngram@AOL.COM>, jerry and linda and penny <ingramlg@bellsouth.com>, john jones <jjones@l-a-net.net>, marion bardwell <mbradwell@tiger.lsuiss.ocs.lsu.edu>, melissa timmins <mct001@vm.cc.latech.edu>, ross downing <red121474@AOL.COM>, roy magee <rmage@usm.edu>, scott sortor <ssortor@tiger.lsuiss.ocs.lsu.edu>, steve owens <sowens@entergy.com>, suzanne morrow <smorrow@odu.edu>, tommy petrey <tpetrey@l-a-net.net> Subject: fw:virus alert -forward Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

just in case you guys haven't heard about this.

waring!!! if you recieve an e:mail titled ''join the crew'' do not open it! it will earse everything on you hard drive!

this message was recieved this moring from ibm and the army national gurad, please share it with anyone that might access the internet.

--part0_885818135_boundary-- ========================================================================= Date: Mon, 26 Jan 1998 08:28:28 -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: Christopher Kilner <Christopher.Kilner@USPTO.GOV> Subject: Re: Billy's surgeons MIME-Version: 1.0 Content-Type: text/plain; charset="us-ascii" Content-Transfer-Encoding: 7bit

>The time is going so fast I can only hope that the time he will be in the >hospital will also go fast.

Karen (and Jenn, and any other first-surgery families),

Although I've always been able to busy myself with my law school studies while my daughter is in the OR, magazines and books have not been much of a help for my wife. The only thing that made the wait tolerable for her was visits from friends and family. We learned this during the first surgery - we were at wits end after only two hours of an eight hour surgery - then our daughter's caregiver, Annette, dropped by with some lunch. Annette also arranged for some of our friends to come by before she left and for my mom to bring dinner before the friends left.

The last six hours, which should have been the hardest, went much faster and better than the first two. Annette has moved on to other things so now I make sure that we have a steady supply of visitors to help make the OR time easier.

Speaking of surgery, we met with both of Ceci's surgeons last week regarding her next surgery - mid-face distraction (and repair to a web space on her hand that closed). Dr. Craig Dufresne will do the facial distraction using a device developed in Mexico and marketed by a German company (sorry, I will get the name the next time we talk with him).

When we talked to him about the advantages/disadvantages of surgery at this time (Ceci turned three in October), he told us that the biggest disadvantage to surgery now is that these distraction devices and the techniques are getting better and better every year. He explained the advantages as: 1) quicker recovery since younger bones stretch easier and heal faster (~6 weeks now vs. ~8-9 weeks @ 5y.o.), 2) improved airway, 3) improved structure for speech (Ceci has a severe underbite), 4) improved cosmetics prior to school-age socialization, and 5) reduced crowding of teeth.

The surgeons are supposed to agree on a date this week, so we'll keep you posted.

Chris, Reggie, Ceci, and Blair Kilner in Alexandria, VA

P.S. We're praying for Blake! ========================================================================= Date: Mon, 26 Jan 1998 09:02:44 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Gaylann1 <Gaylann1@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Blake Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Thanks for the words of support. We are on our way to Dallas this morn and will report when I get back.

Also, the messages from dsprado@PENN.COM are blacked out on my computer. Does any one else experience this?

Love to All, Gaylann, Blake's Grandmother ========================================================================= Date: Mon, 26 Jan 1998 10:11:14 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jim and Kelly Younkin <JimandKelly@YOUNKIN.COM> Subject: Re: Surgeries MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit

Hi from the Younkins! Our prayers will be with all of you having surgery in the near future. I'm sure all the kids will do just great and be home real soon! Just a quick note to the parents with kids having first time surgeries: after Sara's first surgery I was totally shocked to hear that all they were giving her for pain was regular Tylenol! They gave her one dose of morphine just before she left the recovery room and after that just Tylenol every 4 hours. The docs explained that they like to keep the youngest kids as alert as possible so they can check their neuro status and that kids respond much better to Tylenol than adults do. She seemed to feel fine but I was still a maniac about making sure they weren't ONE minute late with her dose! (I figured if they waited til she was really uncomfortable the Tylenol might not be as effective) As she's gotten older they've given her other things for pain management but that first "just Tylenol" deal really took me off guard. Your hospitals might have other policies but I just thought I'd mention it in advance! Best wishes! Kelly, Jim, Jordan, Katie, and Sara ========================================================================= Date: Mon, 26 Jan 1998 12:16:22 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial 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: Surgery's Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Well, we just went for the final Dr. visit prior to "the big day" w/ the reconstruction "team" as they call it. This is the first time they have seen Jordan since he was 2 mos.and the plastic surgeon and his resident were quite interested in his facial appearance..he doesn't hav a lot of the Aperts "usual" and if not for his hands they said they would be hard pressed to call it Apert...hmmmmm sound familiar Densie??? But this first procedure is the same..bifrontal craniotomy w/ orbital advancement..some of the later surgeries may be different as his mid-face hypoplasia is minor and his upper and lower jaw appear to be lined up correctly..for the most part anyway. I didn't believe his eyes were set far apart, but they pulled out the fancy measuring stick to prove it to me...and they are..so this will be fixed later if we want. Our Dr., Dr. Ruas, also mentioned the advancements being made..hes done work in Mexico City....South of the border and hopefully for some of Jordans future surgeries we'll be able to take advantage of these advancements!!!

Thanks for the advice on keeping busy while the little guy is in surgery..Joe has enough garbage to read w/ his boards coming up..although I have no idea how one could concentrate enough to make studying worthwhile..but thats how he handles it..by making good use out of a "forced waiting period" as he calls it. I will probablly stick to doing photo albums and updating Jordans baby book..I am a wee bit behind on these items..as well as some letter writing.

So, with a mere 10 days to go we are all set..Joes donating blood next weekend and then some friends are coming in to spend 2 days before Jordans surgery w/ us...I guess to help keep us busy...Time flies sooo fast..

Thanks for all the support and positive words..it really helps more than ya'll know...but then I guess ya'll do know!!!

Take Care Jenn (dreary and chilly..imagine that???? in St. Petersburg, FL) ========================================================================= Date: Mon, 26 Jan 1998 14:16:09 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Marianne Camous <Camous@AOL.COM> Subject: Versed Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

In a message dated 98-01-25 13:26:44 EST, you write:

<< Peach was given an oral sedative called Midazolam (also goes by the name of Versed, I believe) >>

This is a great drug when dosed appropriately!! It sure makes a difference when Evan gets it as a pre-op. Also it has an amnestic effect- the patient iss less apt to remember the event which has got to be helpful in the long-term. In adult patients, this really helps. And in kids in the ER being sutured, etc. I'd like to think that it will help our kids not have bad memories of pre-op waiting rooms and tests.

Better living through Chemistry! (sometimes ;)

Marianne ========================================================================= Date: Mon, 26 Jan 1998 14:40:33 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Marianne Camous <Camous@AOL.COM> Subject: Re: fw:virus alert -forward Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

I just got this on my professional froup listserve. It is an old hoax. There are several websites which give up-to-date info on viruses (and hoaxes). I have "pasted info from them as follows to help out. Marianne

http://www.mcafee.com/support/hoax.asp The following is from that site: <<This is a hoax because viruses are not carried in e-mail messages. Viruses must be transmitted as an attachment to a message.

By receiving the message you are not in any danger. Every attachment should always be saved and scanned before executing.

Delete any "JOIN THE CREW" e-mail message and DO NOT forward it to anyone. You will only propagate the hoax.>>

There is also a government website for this purpose as follows:

http://ciac.llnl.gov/ciac/

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You should receive a response from the mailing list server within 30 minutes. This list requires confirmation of a subscription before you are added to the list -- this is to resolve some problems we have had with people signing each other up to mailing lists they didn't wish to be on. Simply follow the instructions in the confirmation message and you will receive the welcome information from the list showing you have been successfully subscribed. If you have any problems in using these commands to getting subscribed/unsubscribed to one of the mailing lists after trying these instructions, please feel free to send email to owner-majordomo@tholia.llnl.gov or ciac@llnl.gov for assistance. ========================================================================= Date: Mon, 26 Jan 1998 15:42:09 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "Julia W. Kramer" <JKram511@AOL.COM> Subject: Re: Surgery's Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

A surgery waiting coping mechanism that worked for our family-- Sewing or needlepoint! None of had ever sewed before but we decided to learn to cross stitch to make the time pass faster during the 10 and 11 hour waiting periods. My sister designed 12 squares for friends and family to cross stitch. Some of us were in the waiting room and others were around the country. These squares were difficult and complicated and it took us two yeras and several surgeries to finish. At the end my sister fashioned the squares into a quilt . This is now hanging on a wall in my daughter's home- a living memory of difficult times borne together. I receommend such activity for both men and women- or needlepoint. You have to concentrate so hard on counting the stitches that you don't have time to wonder what is going on in the operating room.

Best of luck to all those in or near surgeries.

Julia, Nate's grandmother in Chicago. ========================================================================= Date: Mon, 26 Jan 1998 17:34:44 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Marianne Camous <Camous@AOL.COM> Subject: Re: Surgery's Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

In a message dated 98-01-26 15:44:07 EST, you write:

<< receommend such activity for both men and women- or needlepoint. >> It seems like that is the only time that I get anything done on my cross- stitch anymore ;) Also a laptop with games on it had worked. Some hospitals will give parents a pager so you can walk around, go eat lunch, etc during surgery. Then if one of the surgeons comes out of the OR and wants to tell you what is going on (we often had a "tag-team" between Plastics and Neurosurg) they will just beep you back. The worst is the waiting rooms where you can't escape the TV with the daytime "talk" shows or the soaps. I'm a public radio junkie and often bring a walkman so I can hear something more rational in the waiting room- or my favorite tapes. And since I usually get very little sleep the night before, a pillow and blanket help if there is an unclaimed sofa or sleep room. i usually show up like I am moving in, but it beets just sitting there being antsy!!

Good luks and prayers for all with surgeries coming up!

Marianne ========================================================================= Date: Mon, 26 Jan 1998 20:22:01 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: GSieb91515 <GSieb91515@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Re: Billy's surgeons Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Chris and Ceci,

I have a great article you might like to read entitled "Le Fort III Advancement with Gradual Distraction Using Internal Devices", by Martin Chin, DDS and Bryand Toth, MD (San Fran and Oakland). It is really very informative and I'd like to get it scanned for everyone to read as soon as I figure out how. We've had some printer problems since we hooked up the scanner so we're in the process of weeding out the cause. Our surgeon has indicated that they've had excellent results from distraction and feels like when Jonathan is at that age (5-6) they will have more history to go on. We plan to continue to gather info until that time and then will make the decision. We're interested in any other info you come up with regarding this subject.

Best Wishes,

Brenda Siebert ========================================================================= Date: Mon, 26 Jan 1998 20:42:00 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: GSieb91515 <GSieb91515@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Re: Blake's Surgery Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Gaylann,

We wish you all the best during this difficult time. Blake is in a great center with outstanding surgeons. We will pray for your strength (and Sonya's and the rest of the gang) and send our most positive thoughts to Blake for a successful surgery and speedy recovery. We will be looking forward to hearing from you when you return. Please give our love and best wishes to Sonya.

The Sieberts Brenda, George, Melissa and Jonathan ========================================================================= Date: Mon, 26 Jan 1998 20:46:18 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: GSieb91515 <GSieb91515@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Re: Daryl's surgery Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Denise,

Congratulations on Daryl's new fingers. Jonathan's thumbs were not fused so I don't have any experiences to share in that regard. However, we are looking forward to a new index finger next month. Best of luck with this go-round.

Brenda ========================================================================= Date: Mon, 26 Jan 1998 20:49:46 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: MHTeach102 <MHTeach102@AOL.COM> Organization: AOL (http://www.aol.com) Subject: An Update Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

An update,

Wanted to apologize for not keeping in touch. But BJ is having a hard time lately. He has spiked a high fever (102 to 103.7). We are trying to reduce his fever by using increased antibiotics and increasing the fluids through his IV and central line. We are keeping our fingers crossed and praying this works. We did a spinal and shunt tap today to make sure it isn't anything too serious. The doctor is telling us that they may have to take him back to the hospital tonight or tommorow if his fever doesn't brake. They are also concerned about how much effort he is having to put forth to breath with the partial ventalator and we may try a full vent for a few days. Well I will run must go get the other kids to bed, so I can resume my postion by BJ's bed.

Marjorie ========================================================================= Date: Mon, 26 Jan 1998 20:57:28 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: GSieb91515 <GSieb91515@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Re: greeting Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Welcome Shannon, Lori and Levi! What area of the country are you living in? Let us know if we can help answer any questions. Finding the right doctors has been one of the toughest battles for me. It just seems like your never really sure if your making the right decision. But I do know that a lot of it has to do with how comfortable you are with the particular physician. We usually get a referral, then ask lots of questions and then pray that we make the right choice.

Anyway welcome to the gang!

The Siebert Brenda, George, Melissa, and Jonathan (13 months) Houston ========================================================================= Date: Mon, 26 Jan 1998 21:48:34 +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>

Happy Birthday Amy Howard!

Joanne (Ohio)

_____________________________________________________________________ You don't need to buy Internet access to use free Internet e-mail. Get completely free e-mail from Juno at http://www.juno.com Or call Juno at (800) 654-JUNO [654-5866] ========================================================================= Date: Tue, 27 Jan 1998 00:39:57 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Thornq <Thornq@AOL.COM> Organization: AOL (http://www.aol.com) Subject: New Member Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Hello!

My name is Lynn Thornquist and I have just recently joined this Listserv, and I have to say that I am very excited about the whole thing. Let me tell you all a little bit about myself and my family.

I am married and my husband's name is Rich, and we have a little boy named Andrew. We reside in Holliston, Massachusetts. Andrew was born on September 5, 1996 weighing in at 8lbs. 6ozs. Andrew was diagnosed first by his pediatrician who thought that is what he had but had a Geneticist come the next morning to confirm his belief. I don't know about the rest of you, but it came as quite a shock.

Andrew's first surgery was when he was only 3 months old and was performed by Dr. John Mulliken and Dr. Michael Scott, both of Children's Hospital, Boston. The first surgery was done because Andrew had what looked like a very tight headband around his skull. The 3-D scan had shown that the back of Andrew's skull was "like a piece of swiss cheese". But miraculously they were still able to give Andrew a new back to his skull. He also has what is called "Kiari Malformation" where the brain grows down and out through the bottom of his cranium. Before that first surgery, Andrew didn't do much of anything but lie there, and after just a few months, he was only 1 1/2 months delayed. The second surgery was the first on his hands. Andrew only has a type 1 hands. Only his fingers were fused and he has what is called "hitch hikers thumb" but that will be corrected when he is 4.

The first hand surgery separated Andrew's index finger and pinkie finger. Dr. Joseph Upton is Andrew's plastic surgeon for his hands and feet. Speaking of feet, Andrew's toes are fused together as well and there is alot of debate regarding separating them. His doctor does not generally separate the toes, but he said he would do it for Andrew, because my husband is adamant!!! An Orthopedist mentioned to me that if the toes are separated then the big toe will be much shorter than the other toes and will separate a considerable amount away from the other toes. I read on the web that someone out there only did the big toe on their child's feet, and I want to know why? And are they going to do the rest? I would love any information regarding the separation of Apert feet or where I might look for some. Well on with my story.

The second cranial surgery was a Frontal Advancement. That surgery unfortunately was the worst to recover from. He was only in the hospital 5 days after his first surgery, which was much more extensive, but we were in the hospital 8 days after the second cranial surgery.

The second hand surgery was done when Andrew was 11 months old, but the casts were off before his 1 year birthday. And after that surgery Andrew finally had four fingers and a thumb!!!!! They still plan to thin down his fingers before he starts school but that will be two fingers at a time and on only one hand at a time.

We have one more small surgery before we can take a long breather and that is on February 4. Dr. Upton is going to go in and cut out some of the nail bed in Andrew's feet because he keeps having really bad ingrown toenails. Has anyone else had that problem?

I have so many questions, but I guess I have plenty of time to ask them. I am so glad to finally be able to talk to other people who are affected by Apert, whether it be parent, sibling, grandparent, aunt or uncle. Please let me know if anyone lives close to us. One main question is, has anyone had children after their child with Apert? My husband and I will eventually be thinking about having more kids and I am curious.

Thank you all for listening and I can't wait until I hear back. Good luck to anyone who has upcoming surgeries.

Lynn, Rich and Andrew ========================================================================= Date: Tue, 27 Jan 1998 21:19:22 +1300 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial 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: Billy's surgeons Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

>I have a great article you might like to read entitled "Le Fort III >Advancement with Gradual Distraction Using Internal Devices", by Martin Chin, >DDS and Bryand Toth, MD (San Fran and Oakland). It is really very informative >and I'd like to get it scanned for everyone to read as soon as I figure out >how.

Sounds interesting Brenda, so good luck sorting out the bugs.

Ann NZ ========================================================================= Date: Tue, 27 Jan 1998 21:19:24 +1300 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial 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"

At 09:48 PM 26/01/98 +0000, you wrote: >Happy Birthday Amy

Hi Joanne, what a lovely thought. But sorry, you are a month early. Look forward to hearing from you again on 27 February (and any other time in between of course).

Cheers, Ann ========================================================================= Date: Wed, 28 Jan 1998 08:08:20 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Alice Lynch <goddess@CAPITAL.NET> Subject: Re: New Member MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit

Dear Lynn, Rich and Andrew:

My name is Alice and my son, Colin, has Aperts. Welcome to a great place. It will be lots of help for you and comforting support.

We haven't done anything about Colin's feet. He walks fine but does have problems with his shoes. We can never find anything that Colin considers confortable. We also use Dr. Upton for hand surgeries. What a wonderful doctor and person. We're lucky to have him.

Two years after Colin was born we had our daughter, Shannon. I was nervous in the beginning. Wondering if what happened to Colin could happen again. All the doctors and professionals agreed it was highly unlikely and everything would be fine. It was. I think if you don't have Aperts yourself, there's not much chance of having two babies with Aperts.

Good luck with the foot issue and again, welcome.

Alice, Jack, Colin and Shannon

---------- > From: Thornq <Thornq@AOL.COM> > To: APERT@LISTSERV.AOL.COM > Subject: New Member > Date: Tuesday, January 27, 1998 12:39 AM > > Hello! > > My name is Lynn Thornquist and I have just recently joined this Listserv, and > I have to say that I am very excited about the whole thing. Let me tell you > all a little bit about myself and my family. > > I am married and my husband's name is Rich, and we have a little boy named > Andrew. We reside in Holliston, Massachusetts. Andrew was born on September > 5, 1996 weighing in at 8lbs. 6ozs. Andrew was diagnosed first by his > pediatrician who thought that is what he had but had a Geneticist come the > next morning to confirm his belief. I don't know about the rest of you, but > it came as quite a shock. > > Andrew's first surgery was when he was only 3 months old and was performed by > Dr. John Mulliken and Dr. Michael Scott, both of Children's Hospital, Boston. > The first surgery was done because Andrew had what looked like a very tight > headband around his skull. The 3-D scan had shown that the back of Andrew's > skull was "like a piece of swiss cheese". But miraculously they were still > able to give Andrew a new back to his skull. He also has what is called > "Kiari Malformation" where the brain grows down and out through the bottom of > his cranium. Before that first surgery, Andrew didn't do much of anything but > lie there, and after just a few months, he was only 1 1/2 months delayed. The > second surgery was the first on his hands. Andrew only has a type 1 hands. > Only his fingers were fused and he has what is called "hitch hikers thumb" but > that will be corrected when he is 4. > > The first hand surgery separated Andrew's index finger and pinkie finger. Dr. > Joseph Upton is Andrew's plastic surgeon for his hands and feet. Speaking of > feet, Andrew's toes are fused together as well and there is alot of debate > regarding separating them. His doctor does not generally separate the toes, > but he said he would do it for Andrew, because my husband is adamant!!! An > Orthopedist mentioned to me that if the toes are separated then the big toe > will be much shorter than the other toes and will separate a considerable > amount away from the other toes. I read on the web that someone out there > only did the big toe on their child's feet, and I want to know why? And are > they going to do the rest? I would love any information regarding the > separation of Apert feet or where I might look for some. Well on with my > story. > > The second cranial surgery was a Frontal Advancement. That surgery > unfortunately was the worst to recover from. He was only in the hospital 5 > days after his first surgery, which was much more extensive, but we were in > the hospital 8 days after the second cranial surgery. > > The second hand surgery was done when Andrew was 11 months old, but the casts > were off before his 1 year birthday. And after that surgery Andrew finally > had four fingers and a thumb!!!!! They still plan to thin down his fingers > before he starts school but that will be two fingers at a time and on only one > hand at a time. > > We have one more small surgery before we can take a long breather and that is > on February 4. Dr. Upton is going to go in and cut out some of the nail bed > in Andrew's feet because he keeps having really bad ingrown toenails. Has > anyone else had that problem? > > I have so many questions, but I guess I have plenty of time to ask them. I am > so glad to finally be able to talk to other people who are affected by Apert, > whether it be parent, sibling, grandparent, aunt or uncle. Please let me know > if anyone lives close to us. One main question is, has anyone had children > after their child with Apert? My husband and I will eventually be thinking > about having more kids and I am curious. > > Thank you all for listening and I can't wait until I hear back. Good luck to > anyone who has upcoming surgeries. > > > Lynn, Rich and Andrew ========================================================================= Date: Tue, 27 Jan 1998 11:38:53 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: LUVS2WRTE <LUVS2WRTE@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Re: New Member Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Dear Lynn, Rich and Andrew

Welcome to the listserv. This listserv is very informative, its my "second" family.

-Andrea (20 yr old with Apert) ========================================================================= Date: Tue, 27 Jan 1998 11:45:10 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jenngram <Jenngram@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Re: New Member Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Welcome to the Thornquist family. I am sure you will find more information and support here than anywhere else. my son, Jordan, is 4 mos. and will have his cranial surgery w/ oribital advancement on 2-10-98. We have talked to our surgeons about the toes and they are only going to release his big toe...to help w/ balance and so he can wear sandals. He told us it was useless to release the other toes b/c a) ther was no reason or benefit and b) it would make his toes/feet very wide ad we would have a heck of a time trying to find shoes that fit and were comfy. Jordans hands are pretty bad and that road will begin after this surgery.

Our geneticist knows of only 1 family in the southeast who has multiole Apert children w/o actually having Apert themselves. It has to do w/ a chromosonal defect within the parents not within the individual sperm/egg that created the child. We were told that there was virtually NO chance of this happening again, but my husband is insistant on being tested to make sure we don't have any chromosonal defects before we have other children. As I think you'll ear throughout this site though, is this condition has only aflicted one child in the family.

Good luck to Andrew on the upcoming surgery...Ingrown nails...OUCH!!! I'm sure he'll be glad to have it taken care of. Welcome to the group

Jennifer Graham (St. Petersburg, FL) ========================================================================= Date: Tue, 27 Jan 1998 12:44:27 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Camous <Camous@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Re: Chromosome testing and glasses Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

In a message dated 98-01-27 11:45:30 EST, you write:

<< We were told that there was virtually NO chance of this happening again, but my husband is insistant on being tested to make sure we don't have any chromosonal defects before we have other children. >>

This might take some doing. As far as I know,(or knew 18 months ago when Evan was born, the DNA probe is still on a research protocol at Johns Hopkins. They