========================================================================= 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!!!

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

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"

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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>

1998</FONT></FONT></DIV> <DIV><FONT color=3D#000000 face=3D"Times New Roman" size=3D2><FONT = size=3D4>  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. =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.  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>     </FONT></FONT></DIV> <DIV><FONT color=3D#000000 face=3D"Times New Roman" size=3D2><FONT=20 size=3D4>      SHANNON, LORI & 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

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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><!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> </DIV> <DIV><FONT size=3D2>My son Devin was born 04-08-97 with Apert's.  = He has had=20 a few surgeries.  We have Dr. Larry Sargent and Dr. Timothy Strait = in=20 Chattanooga, TN.  at Erlanger Hospital.  They are = wonderful!!  I=20 will be in Chattanooga on 2-5-98 for a cranial surgery.  Terri = Farmer spoke=20 to me yesterday re: another family coming while we are to be = there.  I=20 thought she said the families name was Parks.  Is this you? =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> </DIV> <DIV><FONT size=3D2>Welcome to all!!!!</FONT></DIV> <DIV><FONT size=3D2>K,D,T & E</FONT></DIV> <DIV> </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 <<A=20 = href=3D"mailto:jvparks@MIDAMER.NET">jvparks@MIDAMER.NET</A>><BR><B>To:= =20 </B><A = href=3D"mailto:APERT@LISTSERV.AOL.COM">APERT@LISTSERV.AOL.COM</A>=20 <<A=20 = href=3D"mailto:APERT@LISTSERV.AOL.COM">APERT@LISTSERV.AOL.COM</A>><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>       <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> =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.  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.  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>     </FONT></FONT></DIV> <DIV><FONT color=3D#000000 face=3D"Times New Roman" size=3D2><FONT=20 size=3D4>      SHANNON, LORI & 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> </DIV> <DIV><FONT color=3D#000000 size=3D2>Best of luck to your grandson during = this trying=20 time.  May the Lord oversee the surgeons, and the nurses hands as = they=20 perform his surgery and all the pre and post op procedures.   = We will=20 be thinking of you all week.  Have a safe trip to and from=20 Dallas.</FONT></DIV> <DIV><FONT color=3D#000000 size=3D2></FONT> </DIV> <DIV><FONT color=3D#000000 size=3D2>Michele (PA)</FONT></DIV> <DIV><FONT color=3D#000000 size=3D2> </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/

CIAC Mailing Lists

CIAC manages the following mailing list for its electronic publications:

CIAC-Bulletin: CIAC Information Bulletins and Advisory Notices containing important, time-critical computer security information. To subscribe to this list, follow these instructions: Send e-mail to: majordomo@tholia.llnl.gov

In the BODY (not subject) of the message put (either or both):

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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 told us that we were the first prenatal DNA diagnosis. As I look through the boxes I will be unpacking from this move for many months, I will keep an eye out for the info with the specific researcher's names. I think it was a Dr Wang-Jabs- if not info could be obtained through Dr. Karen Filkins in Medical Genetics at West Penn Hospital in Pittsburgh, PA. A routine amnio or CVS won't show the abnormality as it is not enough to change the shape of an entire chromosome (ie like Down's which involves the presence of an additional chromosome). The information we got is that there is at most a 1-2% chance of recurrence within a family- that involving a stem cell line in one parent (where during development an early sperm or egg cell is affected which is then a parent cell for a group of egg/sperm cells). An individual with Aperts has a 50% chance of an affected offspring, two parents with Aperts a 75% chance, etc. There is no risk to the offspring of siblings.

On another recent issue- Evan saw his new pediatric ophthalmologist last week. She's great! She trained at the Hospital for Sick Children in Toronto and has loads of experience with Aperts and other craniofacial syndromes...and she's great with kids!! Apparently Ev has an astigmatism and is farsighted and the subject of glasses came up...and so went my blood pressure!! She feels that that since he can see well enough to play with his toys and find his food etc that correcting his vision with glasses now would be more trouble than it would be worth. But as the discussion turned to the problems fitting glasses on these kids, she mentioned that she has had good luck in the past with attaching them to a cap or holding them on with a band over their heads (I guess kind of like what they use to hold on and ENT light or mirror). Thought that was a new approach to file in the back of the brain should anyone need it! Today we're off to the Rehab doc so maybe, 3 months later, we can get therapy restarted before Ihave to start calling all my state legislators!!

Ciao! Marianne (from foggy San Francisco Bay!!) ========================================================================= Date: Tue, 27 Jan 1998 10:11:53 -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: "Christine L. Clark" <apertnet@IX.NETCOM.COM> Organization: Apert Support & Information Network Subject: Re: Daryl's surgery MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

Denise,

You state:

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??

Are you wrapping the web space with gauze, especially at night, so the weeping areas have no contact? This needs to be kept up for at least 6 weeks after surgery. Michelle's fingers fused back at the bases the first time but we were successful on later sugeries by keeping those web spaces separated. Just get a roll of gauze and wrap it in and out of the web spaces a few times, then around the wrist a couple of times, cut and tape. This way the spaces are protected but they can still use their hands so it can also be used during the day. If you are having such a hard time maybe he should have them on during the day, too.

Another option micht be to have a brace made for him to wear until all healed up to keep the thumb from curling under the palm. They can make these things in rehab.

Good luck!!

Christine ========================================================================= Date: Tue, 27 Jan 1998 13:49:51 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: New Member Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Dear Rich, Lynn and Andrew,

WELCOME. My name is Janine and I have a daughter Emily, 6 months old yesterday. She has already had two surgeries, her cranial surgery and ear tubes put in. She also has a cleft palate. We live in Massapequa, New York (Long Island).

I can't help you with the second child situation since Emily is our second. We have a son three and a half years old.

I'm sure you will find this list as supportive and helpful as I have.

Janine Krebs ========================================================================= Date: Tue, 27 Jan 1998 14:34:40 -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: Steve And Stacy Bell <sshb@EROLS.COM> Subject: Re: Chromosome testing MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

The doctor at Hopkins in Balt., MD is Dr. Jabbs. She is incharge of the Aperts reserch group. John's Hopkins main # is 410-955-5000

Stacy Bell ========================================================================= Date: Tue, 27 Jan 1998 14:16:46 -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: "D. Jefferson" <djeff@MIDWEST.NET> Subject: Re: New Member MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit

Dear Alice:

It is good to hear from your family. Seth and I met Jack and Collin in St. Louis about three years ago at a team evaluation. Welcome to the group. Some interesting questions come up.

Peace, Dori

Dori A. Jefferson djeff@midwest.net ========================================================================= Date: Tue, 27 Jan 1998 12:51:50 -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: "Christine L. Clark" <apertnet@IX.NETCOM.COM> Organization: Apert Support & Information Network Subject: Re: New Member MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

Lynn, Rich and Andrew,

Congratulations on the birth of Andrew and welcome to the list!

I am the mother of a 7 year old daughter, Michelle, with Apert and the director of the Apert Support & Information Network. Many of the questions you ask can be answered from past issues of my newsletter, APERT NEWS. I think it will be a great help to you to get on my mailing list. I also hold get togethers, usually in California, and I had one in Agawam, Massachusetts last summer while we were there visiting family (too bad I didn't have your address then!). I have a few families listed in Massachusetts as well as neighboring states if you would like to get on my networking list, too, so you can contact them. My niece is on the board of the Foundation for Faces of Children which knows several families with Apert.

I would like to give my 2 cents worth on a couple of your questons:

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!!!

My mailing list is well over 200 individuals, families and professionals facing the challenge of Apert (about 175 have Apert). I have talked or corresponded with many of them and I have not heard too many good endings after separating the toes (not many have been done). There are stories of childrens toes growing in the wrong directions (one child was going to have to have a couple toes re-fused), little toes that curl under the feet so the child is actually walking on them all of the time, and even harder time finding shoes to fit. The skin needed for the grafting and the outcome don't really warrant this step for what amounts to more of a cosmetic procedure (results of which aren't always good). This isn't to say some could have success but be forewarned.

> 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?

Michelle and several others have indeed had this problem (some in the hands, too). It should solve the nagging 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.

Reading stories from families and adults with Apert in the mewsletter will really help! Please sign up!! Also, the book that your surgeon, Dr. Upton, helped write about Apert is very informative and I highly recommend it. The problem is that it is out of print now but you can either see it at a medical library or ask Dr. Upton if you could look at it, borrow it or copy it. It is the "Clinics in Plastic Surgery, Apert Syndrome, April 1991". Ask him. If all goes well, Don should have it on Teeter's Page soon (cross your fingers).

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. >

Yes - many have!! Even adults with Apert decide to have children (even though they have a 50/50 chance).

When we were wavering about having another child we were worried about another child with Apert or something else. Most cases are new mutations so there really isn't anything to worry about for you but even though someone tells you that you still can't help but worry. What finally made my decision was the fact that we loved Michelle sooo much and figured that if the next child was born with problems they would at least have each other to confide in. We are truly blessed to have Michelle (and her sister, Shannon) in our lives!!

Contact me privately with your information (see my next message) and I will get you signed up!

Best wishes to you all!

Christine Clark Apert Support & Information Network P. O. Box 1184 Fair Oaks, CA 95628 (916) 961-1092 (phone + fax) apertnet@ix.netcom.com ========================================================================= Date: Tue, 27 Jan 1998 13:06:48 -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: "Christine L. Clark" <apertnet@IX.NETCOM.COM> Organization: Apert Support & Information Network Subject: Re: Apert Newsletter MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

Longshot & Darwin wrote: > > 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?

DEAR RACHEL AND ANY OTHER NEW LIST MEMBERS:

The newsletter is free by sending me your name and address.

The networking list is available to individuals and families facing the challenge of Apert syndrome. It contains names of parents (or the individual), addresses, phone numbers, e-mail (if applicable) and the names and ages of children in the family. It is listed by state and country. You don't have to join (about 85 have) but it's nice to connect with others. I just need this info:

Parents name(s): Address: Phone: e-mail (if applicable): Childrens names and birthdates:

Specify the name and birthdate of the individual with Apert.

That's it - simple - do it today!!

I am a bit behind since the girls had the flu all last week and now I have it. With the help of antibiotics and inhalers I should be able to start work on the next issue of Apert News soon (at least I hope!).

Hope to hear from ALL new families. We are one big family and can use the encouragement from the hints, stories and pictures in APERT NEWS!!

My best,

Christine Clark Apert Support & Information Network P. O. Box 1184 Fair Oaks, CA 95628 (916) 961-1092 (phone + fax) apertnet@ix.netcom.com ========================================================================= Date: Tue, 27 Jan 1998 13:29:51 -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: An Update Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

MArjorie, I'm hoping that BJ will be feeling better again soon. You have done so well with him and your situation. He has been home for a while now. We will pray that his fever will drop and he will be able to continue to stay home. Thanks for taking the time to update us. Give your precious boy a big hug and kiss. Hang in there!!!

Robyn Johnston

At 08:49 PM 1/26/98 EST, you wrote: >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: Tue, 27 Jan 1998 18:45:32 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: An Update Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Marjorie,

we are sending some positive thoughts your way..hoping BJ's fever will break and he will start feeling better again..for every step forward there are two steps backwards!!! I can only imagine how frustrating all this is, but hang in there!! Things'll get better again!! Thanks for taking the time to keep us informed. Ya'll take care and tell BJ we hope hes feeling better soon.

Jenn, Joe, and Jordan Graham (St. Pete, FL) ========================================================================= Date: Tue, 27 Jan 1998 18:07:06 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: TheMorenos <TheMorenos@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Re: An Update on BJ Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Marjorie Our thoughts and prayers are with BJ, you and your family. ========================================================================= Date: Tue, 27 Jan 1998 17:23:58 -0600 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Chad & Denise Graham <cgraham@INFOAVE.NET> Subject: THUMBS/Welcome MIME-version: 1.0 Content-type: text/plain; charset="us-ascii"

Christine,

I have been wrapping Daryl's hands with gauze for 2 months after surgery. Even after the skin is pink and no open spots, it still pulls back together within a day. When his thumbs get a little bigger we have talked about using a splint seperatly on his thumb. I would like more information on the brace and how to get one. Thanks!!

Lynn, Rich, & Andrew,

Welcome to the family. I have a son that was born in Feb. 1996 with aperts. This is a great site for info and support. I can't help you with info about having another child, we are talking about the same thing. The chances are slim of having another child with aperts. On toes, we opted to not have them seperated, because he is walking so well without them being seperated. I hear from several parents and doctors that they tend to grow crooked and it makes it harder to find shoes to fit and these kids are hard enough to buy shoes for. Good Luck, & God Bless!!

Denise Graham ========================================================================= Date: Tue, 27 Jan 1998 19:21:25 -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: ize <ize@TACOMA.CEATLABS.OKSTATE.EDU> Subject: New member MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

Welcome to Lynn, Rich, Andrew and all new members,

My name is Claudia and my husband is Carlos. We have twins Rafael and Felipe, and they are two years old. Felipe has Apert and Rafael doesn't. Felipe had a craniofacial surgery when he was 4 months old, and than hands surgeries and a shunt along the last two years. For now, Felipe is done with the surgeries. The doctores told us that it is possible to do another craniofacial advancement when he gets to the School age, if we agree, just for cosmetic reason. He got four fingers and a thumb on each hand. About his feet, the doctor said that there is no reason or benefit on separeting them and it would make his toes wide and so on. Felipe walks and runs every where and seems to have no problem with his feet. He had to have his big toe nail removed for good because it was always growing under the skin and getting infected. Otherwise he is a big healthy boy, like his twin brother.

Best wishes to all of you that are going to have surgeries and for you that already had, we wish a speed recovery!

The Ize Family from Oklahoma. ========================================================================= Date: Tue, 27 Jan 1998 18:33:24 -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: "Christine L. Clark" <apertnet@IX.NETCOM.COM> Organization: Apert Support & Information Network Subject: Re: THUMBS MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

When his thumbs get a little bigger we have > talked about using a splint seperatly on his thumb. I would like more > information on the brace and how to get one. Thanks!!

Denise,

Michelle was about 20 months old when the first brace was made. It was done in the rehabilitation department of the hand clinic where she saw her surgeon. They cut a piece of plastic the size of her hand, then they heat it up and then mold it to the hand. Then they attach velcro straps to keep it on. It is a custom job. Maybe Daryl should be fitted for one now and not later.

I wish you luck.

Christine ========================================================================= Date: Tue, 27 Jan 1998 20:54:42 -0600 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Chad & Denise Graham <cgraham@INFOAVE.NET> Subject: BRACE FOR THUMBS MIME-version: 1.0 Content-type: text/plain; charset="us-ascii"

Christine,

That is a great idea. I know the stuff you are talking about. We worked with it when we where trying to make a brace for him to be able to feed himself. When we go back to get the cast off I will go strait to the therapy dept. and have them make one for us!! Thanks for the advice!!

Denise Graham ========================================================================= Date: Tue, 27 Jan 1998 21:01:31 -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: MORE GREETING MIME-Version: 1.0 Content-Type: multipart/alternative; boundary="----=_NextPart_000_005F_01BD2B66.BE32C9E0"

This is a multi-part message in MIME format.

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Hey everybody! My name is Lori Parks. I didn't have a whole lot of = time the other night to write so....

My name is Lori Parks. Just 4 short months ago..9-30-97 my husband = Shannon and I became the proud parents of a bouncing 8lb 10oz baby boy, = we named him Levi Cole. (my pregnancy was normal--I held a abnormal = amount of fluid-thats all) anyway.. We were pretty shocked when the nurses told us of Levis' = anomalities. The "problems" didn't bother us one bit we just wanted to know if our = son was going to live. That was all that mattered. Levi was flown from = Marion Il. (were we live) to Childrens Hospital in St. Louis, Mo. = Shannon left a few hours later (I wanted him to be with the baby...of = course.) I fallowed two days later.=20 When I arrived I got info overload, it really didn't matter... I = couldn't take my eyes off my son, he is soooo beautiful. There's not = much I remember about the first week Levi was with us, I do remember = asking how long he would be in the hosp. they said 3-5 weeks. Levi was home 4 DAYS later. All of Levis' insides = are fine. I have done quite a bit of research (the more I learn the more I want = to) His hands are the worst. Rosebuds. He has a protruded forhead. Levi is developing great for his age, sitting up with support, holding = his head up real good, he babbles up a storm. Levi hasn't had and = breathing problems so far, and he eats like a horse. I guess were = pretty lucky. Like I said before we are still researching doctors. =20

Kerri, Devin Tyler and Erin---

Yep, it's us. We have a consultation with Dr. Seargent on the 6th of = Feb. at 11:00 and one with Dr. Strait at 2:00. We are staying at the Ronald McDonald = house. Lets try to meet. I hope Devins surgery goes well. The e-mail address = is my mother-in-laws but if you want to write I can get back with you = within a day. I am excited about these doctors...I have heard great = things. I am still waiting on the book that doctor Seargant wrote. = so many doctors - such a tough decision yu know? well you do know!! Levi has to live with mommy and daddies = decision for the rest of his life. NO PRESSURE THERE!! We want the = best for our son. Money, time or travel is no matter!! I'm sure = everyone else feels the same way.

Denise Grahm=20 I talked to Terry F. We have a consultation 2-6-98. 11:00am. =20 Staying at R. McDonald house. Thanks a bunch!! Hope Daryls' recovery = is smooth. Tell him the Parks family sends him kisses.

Our Prayers our with Blake.

Hi Lynn! Welcome! I am new myself. All this typing is thereputic. = Its a good feeling to know my husband and I arn't alone. You arn't = either = =20

=20

------=_NextPart_000_005F_01BD2B66.BE32C9E0 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 4.71.1712.3"' name=3DGENERATOR> </HEAD> <BODY bgColor=3D#ffffff> <DIV><FONT size=3D2>Hey everybody!  My name is Lori Parks.  I = didn't=20 have a whole lot of time the other night to write so....</FONT></DIV> <DIV><FONT size=3D2></FONT> </DIV> <DIV><FONT size=3D2>My name is Lori Parks.  Just 4 short months = ago..9-30-97=20 my husband Shannon and I became the proud parents of a bouncing 8lb 10oz = baby=20 boy, we named him Levi Cole.  (my pregnancy was normal--I held a = abnormal=20 amount of fluid-thats all)</FONT></DIV> <DIV><FONT size=3D2>  anyway.. We were pretty shocked when the = nurses told us=20 of Levis' anomalities.</FONT></DIV> <DIV><FONT size=3D2>The "problems" didn't bother us one bit we = just=20 wanted to know if our son was going to live.  That was all that = mattered.=20 Levi was flown from Marion Il.  (were we live) to Childrens = Hospital in St.=20 Louis, Mo.  Shannon left a few hours later (I wanted him to be with = the=20 baby...of course.)  I fallowed two days later. </FONT></DIV> <DIV><FONT size=3D2>When I arrived I got info overload,  it really = didn't=20 matter... I couldn't take my eyes off my son, he is soooo = beautiful. =20 There's not much I remember about the first week Levi was with us,  = I do=20 remember asking how long he would be in the hosp.</FONT></DIV> <DIV><FONT size=3D2>they said 3-5 weeks.  Levi was home 4 DAYS = later. All of=20 Levis' insides are fine.</FONT> </DIV> <DIV><FONT size=3D2>I have done quite a bit of research (the more I = learn the more=20 I want to)</FONT> </DIV> <DIV><FONT size=3D2>His hands are the worst.  Rosebuds. He has a = protruded=20 forhead.</FONT></DIV> <DIV><FONT size=3D2>Levi is developing great for his age,  sitting = up with=20 support, holding his head up real good,  he babbles up a = storm.  Levi=20 hasn't had and breathing problems so far, and he eats like a = horse.  I=20 guess were pretty lucky.</FONT></DIV> <DIV><FONT size=3D2>Like I said before we are still researching = doctors. =20 </FONT> </DIV> <DIV><FONT size=3D2></FONT> </DIV> <DIV><FONT size=3D2>Kerri, Devin Tyler and Erin---</FONT></DIV> <DIV><FONT size=3D2></FONT> </DIV> <DIV><FONT size=3D2>Yep, it's us.  We have a consultation with Dr. = Seargent=20 on the 6th of Feb. at 11:00</FONT></DIV> <DIV><FONT size=3D2>and one with Dr. Strait at 2:00.  We are = staying at the=20 Ronald McDonald house.</FONT> </DIV> <DIV><FONT size=3D2>Lets try to meet.  I hope Devins surgery goes = well. =20 The e-mail address is my mother-in-laws but if you want to write I can = get back=20 with you within a day.  I am excited about these doctors...I have = heard=20 great things.  I am still waiting on the book that doctor Seargant=20 wrote.       so many doctors - such a = tough=20 decision</FONT> </DIV> <DIV><FONT size=3D2>yu know? well you do know!!  Levi has to live = with mommy=20 and daddies decision for the rest of his life.  NO PRESSURE = THERE!! =20 We want the best for our son.  Money, time or travel is no matter!! = I'm=20 sure everyone else feels the same way.</FONT></DIV> <DIV><FONT size=3D2></FONT> </DIV> <DIV><FONT size=3D2>Denise Grahm </FONT></DIV> <DIV><FONT size=3D2>I talked to Terry F.  We have a consultation=20 2-6-98.  11:00am.  </FONT></DIV> <DIV><FONT size=3D2>Staying at R. McDonald house.  Thanks a = bunch!! =20 Hope Daryls' recovery is smooth.  Tell him the Parks family sends = him=20 kisses.</FONT></DIV> <DIV><FONT size=3D2></FONT> </DIV> <DIV><FONT size=3D2>Our Prayers our with Blake.</FONT></DIV> <DIV><FONT size=3D2></FONT> </DIV> <DIV><FONT size=3D2>Hi Lynn!  Welcome!  I am new myself.  = All this=20 typing is thereputic.  Its a good feeling to know my husband and I = arn't=20 alone.  You arn't either</FONT></DIV> <DIV><FONT size=3D2></FONT><FONT color=3D#000000=20 size=3D2>          &nbs= p;           &nbsp= ;            =             &= nbsp;           &n= bsp;           &nb= sp;      =20 </FONT></DIV> <DIV> </DIV> <DIV><FONT size=3D2>   </FONT></DIV></BODY></HTML>

------=_NextPart_000_005F_01BD2B66.BE32C9E0-- ========================================================================= Date: Tue, 27 Jan 1998 22:42:02 +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>

Ooops!

I guess this is the first sign of stress - not being able to totally comprehend what you read. I read somewhere Amy's b-day was Tuesday. Today is Tuesday. But- February 27 is a FRIDAY! AUGH! Help! Calgone take me away! Beam me up Scotty! It's been a long three weeks. 50 hour weeks, job uncertainty, life!

Welcome to the family, Lynn, Rich and Andrew! My name is Joanne, I'm 32 with Aperts. I'm usually not so lame brained, only when I'm under a lot of stress! I hope you can find the love and support I have found within these people.

Marjorie, Keep the faith! I'm sending my prayers and love your way!

Joanne in 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 22:48:18 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: MHTeach102 <MHTeach102@AOL.COM> Organization: AOL (http://www.aol.com) Subject: An update Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

I want to say welcome to all the new families that have joined the list recently.

The Update,

BJ's fever is still hanging around. But at least it has stopped going up, he seems to be holding it steady around 103.6, but that is still very high for prolonged time. The doctor has adjusted BJ's ventalator where he doesn't have to work hard anymore, and they have increased the fluids going through his IV. BJ is getting 2 more units of blood tonight and if that doesn't help, he will probably go back to the hospital tommorow. The results of the spinal tap and shunt tap were unconclusive so they did another set today. We should know something in a couple hours. David and I are doing our best to keep our heads above water. But it is getting very tiring for us and BJ. I know we shouldn't get discouraged with all the setbacks, but it is hard to maintain a positive outlook.

David is so much better than me, at pretending everything is alright. He doesn't seem to get upset as much as I do. I keep telling myself that I have to be strong for David, BJ and the kids, but sometimes it is more than I can do. Well I am starting to ramble on again so I will go.

I do have a ? though. I was wondering what types of post surgery meds and other pain meds other Apert's children might have had experience with.

BJ is on a morphine pump, but it seems that now it doesn't seem to be helping that much. So I am looking for options for a change out pain med. His pain level has been rather high for the past few days, and he winces from pain everytime he is moved. He even cries when we touch him and try to comfort him. So any advice will be helpful.

Take care and kiss your little ones Marjorie ========================================================================= Date: Tue, 27 Jan 1998 23:23:02 +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: <6a5cb7c4.34ceaa83@aol.com> MIME-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7BIT

> I do have a ? though. I was wondering what types of post surgery meds and > other pain meds other Apert's children might have had experience with. > > BJ is on a morphine pump, but it seems that now it doesn't seem to be helping > that much. So I am looking for options for a change out pain med. His pain > level has been rather high for the past few days, and he winces from pain > everytime he is moved. He even cries when we touch him and try to comfort him. > So any advice will be helpful.

Marjorie, The big problem with narcotic pain medications is that the body eventually develops a tolerance and it takes larger doses to get the same effect. One way to minimize this problem is to alternate pain medications. I'm not qualified to make any recommendations other than that BJ has had so much pain for such a long time that he should probably be seen by someone who specializes in treating chronic severe pain. They're the folks who really know what to do with this kind of case.

Judy ========================================================================= Date: Tue, 27 Jan 1998 23:24:57 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: Post surgery meds Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Andrew was given morphine in the hospital every four hours or so. After a day or so, they would give him codeine, as to try and wean him off. The only thing that they sent me home with was a perscription for Tylenol w/Codeine. I was lucky though, because Andrew didn't really need it but for the first 48 hours. (But give him an ear infection and he is a basket case!!) The Codeine was not very good for Andrew if he didn't have anything in his stomach.

I hope this helps some, and good luck.

Lynn Thornquist ========================================================================= Date: Tue, 27 Jan 1998 22:34:45 -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: "D. Jefferson" <djeff@MIDWEST.NET> Subject: Greetings From Murphysboro IL MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit

Lori:

We are your neighbors. We live just west of you in Murphysboro. E-mail me direct and we can arrange to meet. Our son Seth is 7 years old and his hands were rosebuds also.

Dori and Richard Jefferson djeff@midwest.net ========================================================================= Date: Tue, 27 Jan 1998 23:34:54 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: Thornq <Thornq@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Re: An update Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Margorie,

Just a little addition to my other e-mail. I have to agree with Judy about the medications. They started out strong with Andrew and gradually went down. Judy is correct, I'm sure there are pain specialists in the hospital. With Andrew's surgeries, I found that I must put my foot down about certain things. If you feel B.J. needs a medication adjustment or such, just adamantly demand you speak to someone who specializes in this sort of area. With Andrew's first surgery, everytime I would finally get him back to sleep in the middle of the night, a nurse would come in and have to take his temperature or take oxygen level, and it got to the point where I just told them they were not doing it then and I would call them when he woke up next.

I hope that helps too.

Lynn ========================================================================= Date: Wed, 28 Jan 1998 15:41:43 +1100 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Carol Hamzsak <carolh@HOTKEY.NET.AU> Subject: New Member MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

Dear Lynn, Rich and Andrew

Hi and welcome. I am from Victoria in Australia and seem to be the only Aussie on the Listserv at the moment. Where are they all????????

I am a mother of a 2 1/2 year old girl with Apert Syndrome. I also had alot of problems with my daughters toe nails when she was younger and was in and out of the doctors surgery getting antibiotics because of infections caused by her toe nail (the big toes)getting ingrown all the time. I had several conversations with our plastic surgeon here and had to go into hospital for removal of the really bad one abour 4 times where she had to have anesthetics for this which I did not like so I would try to work this in with her other surgeries as much as I could so she would not be put to sleep so many times.

The plastic surgeon did say to me at the time I could have the nail removed permanently If it did continue but he did say that it does correct itself eventually. I could never see that happening at the time but believe it or not it did. It has not been a problem anymore. I hope this helps

Welcome Carol ========================================================================= Date: Tue, 27 Jan 1998 23:48:06 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: Thank you!!! Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Hello everyone!

I just wanted to thank all of you for your wonderful responses and for making me feel so welcome. I also want to say that if your wondering why all my messages are so late at night is because Andrew has had a very hard time going to sleep on his own since the start of his surgeries that it takes a very long time for him to fall asleep. Does anyone think that children at this age have nightmares about the surgeries? I tend to think so. Maybe that is a question for our older Aperts out there. Do any of you have nightmares even as adults? I also wait for my husband to go to sleep as well so I can have peace and quiet.

Well, thank you again everyone, you have been really great!!!!!!

Lynn ========================================================================= Date: Tue, 27 Jan 1998 23:47:48 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: New Member Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Lynn Welcome to a great source of information and camraderie!!! I live in the Boston area (Holbrook-which is 12 miles south of Boston). Our son Tim, who is 16 years old, is also treated at Children's by the very same wonderful doctors you have. You are in good hands, to be sure. Tim has had many surgeries, his most recent being the midface advancement. He did not have his toes separated but does have regular podiatrist appointments to keep control of the nails. Maybe we will see you in clinic some day!!! Tim is our second child. His sister, who is "normal" (whatever that is!!!!) is 18 and he has a younger brother who is 8, with no problems at all. The decision to have another was difficult and part of the reason we waited so long (8 years). However, we had been reassured that we had no reason to worry about Apert reoccurring. I think I was more worried about other, more common, birth defects. It all worked out for us and we have all adjusted quite well.

Beth Tolson (and Tom and Tim and Kathleen and Kevin) ========================================================================= Date: Tue, 27 Jan 1998 23:59:32 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: Thornq <Thornq@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Re: New Member Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Beth,

I have a feeling that we have met at Children's before. Your last name really rings a bell. Maybe Dr. Upton mentioned me getting in contact with you before. Who knows!!!! Now, I was told by Dr. Mulliken that Andrew's midface advancement (his eyes) would be done at about seven years of age. Did they wait unusually long to do Tim's at age 16, or did I misunderstand you? Andrew does not have a typical Apert midface problem. The only thing that needs to be fixed will be his eye sockets and then a possible eye muscle surgery because whenever he looks up his eyes go outward. Has anyone else had this problem and had a similar surgery? (Boy am I glad I got a computer and found you guys!)

Thanks to all and hope everything goes well.

Lynn Thornquist ========================================================================= Date: Tue, 27 Jan 1998 23:53:22 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: Thornq <Thornq@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Toes Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Carol,

Thank you for your input. I think that I confused a few people about Andrew's ingrown toenails. The ingrown toenails are between his normal toenails. So once this is done, he will have five normal looking toenails. I am also curious if anyone has had any experience with splints. It is possible that Andrew will have full splints for a few days and I don't know what to do with him. He will be so upset and cranky because he will not be able to get down and walk around. HELP!!!

Thanks again everyone! ========================================================================= Date: Tue, 27 Jan 1998 23:52:36 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: ETolson643 <ETolson643@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Re: Dr. Upton's Book Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Does anyone know how to get a copy of Dr. Upton's Book??? I could call him and ask him. Our son, Tim, is the photo on the inside cover. He is also featured in several other places in the book, which I happened to see at a conference at Children's. He's a celebrity!!! His Dad would like a copy of the book and I am trying to get a hold of it. Tried Amazon books...no luck.

Beth Tolson ========================================================================= Date: Wed, 28 Jan 1998 00:14:04 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: Thornq <Thornq@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Re: Dr. Upton's Book Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Beth,

I would love a copy of Dr. Upton's book as well, and I am going to be seeing him on February 4 for Andrew's toenail surgery. If you would like, I will ask him for you. And in return, if YOU find the book let ME know.

Lynn ========================================================================= Date: Wed, 28 Jan 1998 04:49:16 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: BRACE FOR THUMBS Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

In a message dated 98-01-27 21:53:48 EST, you write:

<< I know the stuff you are talking about. >> Orthoplast is one brand I think.

Marianne ========================================================================= Date: Wed, 28 Jan 1998 04:53:56 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: An update Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

In a message dated 98-01-27 23:25:10 EST, you write:

<< The big problem with narcotic pain medications is that the body eventually develops a tolerance and it takes larger doses to get the same effect. >> In my Orthopaedic Surgery days, I found that Toradol (ketorolac) was sometimes helpful in addition to a narcotic for patients with tolerance for whatever reason. it comes in injectable or oral forms for short term use. Might be helpful for times of additional stress.

Marianne ========================================================================= Date: Wed, 28 Jan 1998 04:58:07 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: Thank you!!! Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

In a message dated 98-01-27 23:51:50 EST, you write:

<< Does anyone think that children at this age have nightmares about the surgeries? >>

Lynn, I spoke about a year ago with a young man who had been born with a severe cleft lip/palate. He reassured me that after numerous surgeries in his early childhood, all he re,members now is his mother being there and comforting him after surgeries- not specific bad things about the experience itself. I've taken some comfort in that after all of Evan's experiences.

Marianne Camous ========================================================================= Date: Wed, 28 Jan 1998 08:06:15 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: Jenngram <Jenngram@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Re: MORE GREETING Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Welcome Lori and the Parks family!! Looksa like we had a birthday around the same time..Jordan was born on 9-18-97..I think I may have told you this already. I totally knowwhat you mean about how BEAUTIFUL Levi was/is..Before they transported Jordan to All Childrens, here in Tampa, my husband was tryng to prepare me for what he would look like (I had a C-section and didn't get to see hm for a few hrs) and really had me worried. when they wheeled him in I looked at my husband and told him he was nuts! This little boy was and continues to be a cutie potootie and looks just like his dad (he has from birth..everyone saw it but my husband). And Jordans insides are ok as well (knock on wood)..although we worry CONSTANTLY about his breathing and measure his head far too much b/c I am paronoid about hydrocephalus (I know Marianne..I am not suppose to do that anymore!!!!)! Sounds like developmentally they are right together also..babbling up a storm, sitting up and so forth (they should be friends!!!)Like Levi, Jordan has rosebud hands..but I was grateful to accept a better craniofacal outlook over a worse syndactly one!!

I hope you find a doctor that ya'll like soon. Our Dr.(Dr. Ruas) here went to school with Dr. Sargent and just told me earlier this week he was a great doctor and excellent surgeon, as is Dr. Marsh in St. Louis, and some guy in Dallas (Sorry, can't recall his name)..Just some info I got while we were chatting in his office!! am sure you will find someone soon that will work out for ya'll. Fortunately we have a great group here locally!!!

Anyway, good luck to ya'll..Jordan is having his first cranial surgery on 2-10, so when Levi has his it'll still be fresh, probablly too fresh, in our memories so we'll let ya know what to expect. As will all those who have had this done already..thats the best part about this group..You ALWAYS know what to expect!!!! Thats truely a blessing!!!

Take care and Good luck on the Dr. quest, Jenn (St. Petersburg, FL) ========================================================================= Date: Wed, 28 Jan 1998 08:13:07 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,

Adding to what Judy said, my father-in-law is an anesthiologist and I know one of hispartners deals with chronic pain issues and ses patients regarding this. I also know there is a pediatric anesthiologist up in the northeast that deals with the issue of childrens pain..both short and long term. Maybe you could ask around ans see if any of BJs doctors/nurses know of anyone similar in your area. I know its not much. but maybe its a start.

We'll keep our fingers crossed for BJ..remember to take care of yourself..you don't always have to be the rock of gibralter (I know, I know..easier said than done)!!

Take care..our prayers are w/ you, Jenn ========================================================================= Date: Wed, 28 Jan 1998 08:20:13 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

Lynn,

While Jordan doesn't have the eye problems..yet..he too doesn't have the "usual" Apert mid-face hypoplasia..and will prob. only have to have the eye sockets move in closer..and only then if he looks odd and we all agree..they are not drastically far apart and our surgeon isn't sure he'll need it. Which its nice to hear occassionally, as we all hear every surgery the kids must have, to hear they may not need one is a treat!!

Take Care, Jenn (St. Pete, FL) ========================================================================= Date: Wed, 28 Jan 1998 14:58:48 GMT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Qing Gong <qing@ASRC.CESTM.ALBANY.EDU> Subject: Re: New Member Content-Type: text/plain Mime-Version: 1.0 Content-Transfer-Encoding: 7bit

Lynn, Welcome to the listserv. My name is Qing and I am a mother of a two year old girl with Apert and her name is Vivi. We also go to Children's for Vivi's surgeries. Our plastic surgeon is also Dr. Mulliken. Our hand surgeon is Dr. Hergrueter. Vivi had one forehead advancement surgery at 10 1/2 months of age. Dr Mulliken said all she will need in terms of craniofacial surgeries is a midface advancement which will probably happen when she is 9-10 years old. I have the same question for Beth: Did they wait unusually long to do Tim's midface? In regard to Vivi's feet, we are not going to have the toes separated because she walks and runs just fine and she doesn't have the nail problems. My husband and I have another girl who is 6 years old and normal. We were told by our genecist that our chance of having another child with Apert is the same as any family without a Apert child, which is, according to my reading, 1 in 100,000 to 160,000. Qing ========================================================================= Date: Wed, 28 Jan 1998 11:27:16 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: New Member Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Lynn Tim had a previous surgery on his eyes and forehead when he was 10(?). His initial cranial surgery was at four months. He has had a total of 13(?) procedures so far. The last surgery was the most complex and involved not only his forehead and eye sockets but also his cheekbones and upper jaw.

Beth ========================================================================= Date: Wed, 28 Jan 1998 11:34:37 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: New Member Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

As I mentioned before, this is really the second part of Tim's midface, the first having been done when he was 10(?) which involved only the forehead and eye sockets. This surgery involved the cheekbones and upper jaw as well as the eyes (again) and the forehead (again...which needed redoing.) The plan is for a surgery on Tim's jaw when he is about 18. Also, Dr. Mulliken would like to smooth his forehead and do some nose straightening. I always ponder...when do we reach the point where enough is enough. Tim is so easy going and doesn't share his feelings unless pressured to do so. I want him to be part of the decision now. It's harder and harder for me to put him back in the hospital. Beth ========================================================================= Date: Wed, 28 Jan 1998 11:42:43 -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: Bob Horning <Bob.Horning@CORP.HONEYWELL.COM> Subject: Re: New Member

>From: ETolson643 on Wed, Jan 28, 1998 12:06 PM

>I always ponder...when do we reach the point where enough is enough. >Tim is so easy going and doesn't share his feelings unless pressured >to do so. I want him to be part of the decision now. It's harder >and harder for me to put him back in the hospital. >Beth

Beth

I echo your words. Krista is 10 and each operation gets tougher. Her last two (a couple years ago and about 3 weeks ago) were on her nose. The first one was needed to clear out all the bone in her nose and open the airways. The recent one was to open it even more and begin to build and shape it. There is one more this summer to do the final shaping, etc. But in both of the last two cases, she got an infection in her nose (under the skin where he put the bone, not just a nasal infection). The first time, the surgeon had to make a cut between her nose and eye just to drain the buildup of pus and fluid. This time, we've been able to keep draining it through existing holes, but it's really dragged on a been a lot of work. For her and for us. She's had it for 3 weeks now and the surgeon says it could be another month before it's cleared up. Although in the end it's probably worth it, they sure have to go through alot.

Does Tim give you any feedback on whether he thinks it has been worth the pain and effort?

Bob Horning ========================================================================= Date: Wed, 28 Jan 1998 14:35:30 -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: New member Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

Hello to the Thornquist family. My name is Karen and my husband Bill and I have son Billy who was born on March 4th 1997. Billy has six older sisters.We are still new to this group but have felt welcome right from the start.Billy was born with Apert and had many health problems . He was four weeks early and had breathing problems and internal problems also. He wasin the hospital for two and a half monthes before he came home. He had heart surgery twice and belly surgery to correct a few other things. Today is is a very different little boy.When he was hospitalized he was given many different Meds including morphine. He also took six Meds when he came home two were heart meds and within three weeks after he was home he was completly of of everything.I never worried so much about the pain medicine because I knew his doctors were doing a great job and they knew what was best at that time. Today I question pretty much everything. I have found and I think others will agree. That one of the most inportant person is Billy's pediatrician. From day one she took on Billy's syndrome like he was her own.She had some knowledge of Aperts but she researched and found out everything possible. She helped us more than I can say. She called me every day after Billy came home. She gave us her home number incase we needed her and insisted Billy have a nurse ccome in everyday to check him and even talked personally to the company who supplied Billy's medical supplies and told them exactly what she wanted delivered to our home weekly. So, when we have a question about things other Dr's say or want us to do we trust her judgement.She also cried the first time Billy sat up on the table in her office without anyone holding him. I can only hope that other have a wonderful person like like her in her childs life.

As far as Billy's feet he has seen a foot specialist locally and has had he feet casted for a few weeks which help straighten them out a great deal. But as others have said the doctor does'nt think seperation is a good idea. Billy will be having his first cranial surgery on Feb. 3rd and we are very nervous. But talking to thee people on this server has helped a great deal. Again welcome Karen(in Pa.) ========================================================================= Date: Wed, 28 Jan 1998 14:39:29 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Leanne Maclean <lmaclean@NETCOM.CA> Subject: Re: Thumbs MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii

Denise,

Amy had her thumbs seperated when she was 9 months old. When the cast came of (3 1/2 weeks later) I had splints made for her at our local rehabilitation hospital. It was a new adventure for them so it took a little experimenting. They also used a combination of plastic that they heated to mold, neoprene (as in wetsuits) to make a glove, and velcro to hold it all on. We even had our choice of color!!

She had to wear them almost constantly for the first month or two, then at nap times and bed time for a few more months. We went in regualarly to have them adjusted. They kept increasing the space it was holding the thumb and index finger apart to ensure the largest web space possible. We were all pleased with the results.

Amy is now 5 1/2 and we are considering having the web space increased on her right hand only. Her left is fantastic and she is left handed. It looks like we will be going through the splint procedure again- luckily I saved them and the therapists will have a 'prototype' to work with!

Best of luck, Leanne (Alberta, Canada) ========================================================================= Date: Wed, 28 Jan 1998 14:58:47 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: foster <foster@ICONTECH.COM> Subject: Apert bracelet Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

Christine'

I just wanted to tell you that we have put the bracelet you sent on the chain we have all of Billy's medials on. The are pinned to the bottom of his mattress . The chain will be on his bed in the hospital as they have always been from the day he was born. One other thing that we find assuring is everynight we rub a little bit of holly oil under his chin when we put him to sleep.That may sound strange to some but it makes us feel as if he has a little bit more protection while he sleeps. We are not even Catholic ! I got that idea from a women I worked with when my daughter Kaila was in the ICU unit bwhen she was born. And to this day Kaila still puts in on at night. This same women brought us some holy water from a nun she had told about Billy. It was brought back from Lordes in France, And we are saving it for when he has his surgery. Anyway thanks again for the bracelet and hope your daughter is having a good school year.

Karen ========================================================================= Date: Wed, 28 Jan 1998 15:18:50 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: foster <foster@ICONTECH.COM> Subject: Jordans Surgery Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

Jenn, Has Jordan gone for his preadmission test yet? Billy went on Monday and was given a good going over by the team that will be doing his surgery but we were told by the doctors that he didn't need any tests done. Any comments from anyone?

Karen ========================================================================= Date: Wed, 28 Jan 1998 17:55:38 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: Jordans Surgery Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

In a message dated 98-01-28 15:37:06 EST, you write:

<< we were told by the doctors that he didn't need any tests done. Any comments from anyone? >>

This is pretty standard for a healthy kid. There are "protocols" for pre-op testing depending on age and pre-existing disease based on loads of outcomes research. (I went through it all for a presentation on pre-op evaluation that I have given as part of an interview for a faculty position and later as part of a Fundamentals of Surgery course I taught for PA students) Basically for healthy kids- none is necessary. They often do a blood count at the start of the procedure as a baseline if they expect blood loss from the procedure. And most kids have their hemoglobin and hematocrit checked at various points as part of a normal well-child check (every couple of years or so). Findings on physical exam are a much better indicator of problems that routinely running lab tests. And you save the problems that can happen when you get an erroneous lab value- this happened to us enroute across country as they checked Evan's blood chemistries before putting him on Vancomycin and got an erroneously low sodium level- one that would have meant admission to ICU and lots of ugly things. By rights if it had been so low, he should have been having seizures! Trust me, my blood pressure went through the roof until a repeat test came back normal!! ;)

Hope this helps! Feel free to ask the providers why they are or aren't doing these things- sometimes things can get forgotten and they should be very willing to explain ANYTHING you don't understand.

Marianne ========================================================================= Date: Wed, 28 Jan 1998 17:53:56 -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: CHATTANOOGA MIME-version: 1.0 Content-type: text/plain; charset="us-ascii"

LORI,

I was wondering if you knew when you would be getting in to Chattanooga on Thursday, Feb. 5? I will be there all day to be with Kerri, during Devin's surgery. I will stay late if you would like to meet. Friday would be busy for you and I know you will want to talk with kerri. It is to hard to drive to Chattanooga two days in a row. Daryl gets tired of his carseat. I would love to meet you and Levi.

Kerri,

I will be there sometime Thursday morning. If there is anything you need, let me know and I will gladly bring it!

Denise Graham ========================================================================= Date: Wed, 28 Jan 1998 18:39:11 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: Jenngram <Jenngram@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Re: Jordans Surgery Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Karen,

Hes had all the usual..3-D CT, blood typed/crossed, and we met w/ the neurosurgeon and plastic/reconstructive surgeon...The day of admissions we'll meet the anesthiologist and anyone else who will play a signifigant role. His surgery is scheduled for 9am and we have to be there for 6am. I said Jordan was going to sleep in his car seat, since they have to be npo, I DO NOT want to stir him if I can help it!! Joe will donate blood next week and then we're set. He really doesn't have to have anything else done..except fo a clean bill of health from the pediatrician 5 days prior to surgery. I know after surgery he'll have some tests..another 3-D CT, but mostly it will be stuff dealing w/ his hands b/c he'll be out of it so that will make it easier.

I know ya'll are getting as anxious as we are. The other day I thought, "Well, in 2 Tuesdays I'll be sitting at the hospital waiting for Jordan to come out of surgery" I got so nauseated I almost had to go to the bathroom and throw- up. Gosh, I will be so glad when this is over..the worry and anxiety is exhausting..as I am sure you know!!

Let us know how things go, Take care and have a good weekend!!! Get some rest!! HAH!!

Jenn ========================================================================= Date: Wed, 28 Jan 1998 21:06:47 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: Re: An update Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

BJ has been seen by the chronic pain clinic at the hospital, they are the ones who put in the pump. I like the pump because it allows us to give smaller doses of the pain medication closer together, so usually he doesn't have to wait for new medicine to kick in. Today and they ordered two new medications (Meperidine and Buprenaphine) they are going to try giving these two in place of the morphine for a few days. Another suggestion they gave us was a spinal block, but I don't like the way they described the procedure.

He is holding his own today, his fever has gone down slightly (to 102.8) He hasn't improved breathing wise, but he hasn't gotten any worse either. The doctors seem to think that he might be fighting spinal meningitis. But we won't know for sure until the cultures grow something (hopefully will know soon). The doctors have tripled his antibiotics though and we plan to admit BJ to the hospital again in the morning. The doctors and us are concerned about his new shunt if the cultures come back positive and we can do more to fight it there.

I am very scared about what the next few days hold, I really don't know if we can go through this again. But I also know that we have to do what ever we have to to give BJ a chance at life again. I have done all I know to do, I have talked to the doctors here, and met with specialists in Dallas and prayed more than I ever thought I could. But now we are back to waiting and wondering again. I know I shouldn't let myself get discouraged but it is hard to put a happy face on while all this is happening. I wish I had as much strength as David seems to have, he seems to be able to handle every setback with ease.

I will go, need to see if I can get a hold of the doctors tonight and see if we have any results yet. Will let you all know something when we do.

Marjorie Harmon ========================================================================= Date: Wed, 28 Jan 1998 21:13:51 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: Something to share Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

> Thoughts by Rainy ?????????????????

YOU ARE WORTHY

Do not undermine your worth by comparing yourself with others. It is because we are different that each of us is special. Do not set your goals by what other people deem important. Only you know what is best for you. Do not take for granted the things closest to your heart. Cling to them as you would your life, for without them, life is meaningless. Do not let your life slip through your fingers by living in the past, nor for the future. By living your life one day at a time, you live all the days of your life. Do not give up when you still have something to give. Nothing is really over until the moment you stop trying. It is a fragile thread that binds us to each other. Do not be afraid to encounter risks. It is by taking chances that we learn how to be brave. Do not shut love out of your life by saying it is impossible to find. The quickest way to receive love is to give love; The fastest way to lose love is to hold it too tightly; In addition, the best way to keep love is to give it wings. Do not dismiss your dreams. To be without dreams is to be without hope; To be without hope is to be without purpose. Do not run through life so fast that you forget not only where you have been, but also where you are going. Life is not a race, but a journey to be savored each step of the way ========================================================================= Date: Wed, 28 Jan 1998 21:26:46 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: Thornq <Thornq@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Re: New member Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Karen,

Thank you for your welcome and I really appreciate your input regarding the feet. Don't worry about Billy's first surgery, I'm sure everything will be fine. I remember being as nervous as you are and the nervousness doesn't get any better as the surgeries go on. Bring lots of things to do inorder to keep your mind off of it (if that is possible). I don't know about anyone else, but at Children's Hospital in Boston, they have a liason nurse in the waiting room which gives you updates every 1 1/2 hours. It is a wonderful system. I have family in Balacynwyd, PA and intend to visit them in March of this year. Maybe we could possibly get together for a day while I'm there. If you have any questions about the upcoming surgery, feel free to e-mail me anytime. Andrew has a small surgery on 2/3/98 to cut out some ingrown toenails.

Best wishes to all.

Lynn ========================================================================= Date: Wed, 28 Jan 1998 21:34:04 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: Thornq <Thornq@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Re: Jordans Surgery Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Karen,

Hello again! Andrew went for his pre-op the day before surgery. The only things that we have ever done was 1) visit with nurse: temp.,weight, length, listening to his chest, and asking ALOT of questions; 2) visit with Anaesthesia: made sure a mask would fit (and it did) and a little bit about what would be happening as well as signing a release; 3) visit with Plastics Nurse: answered any questions; and last but not least (Andrew's favorite) 4) blood was taken. I hope with Billy's surgery, you were able to give blood for him. Two units of blood were needed for Andrew's first cranial surgery. My husband and mother-in-law gave. That is all we have ever needed to go through.

I hope that helps.

Lynn (Boston, MA) ========================================================================= Date: Wed, 28 Jan 1998 21:39:26 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: Re: An update Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Margorie,

I hope you know that you, David, and BJ are in my prayers. I have also asked that you be added to the list at Church. Don't give up hope, you are stronger than you realize. Just your love alone for BJ is enough. And remember, you always have all of us back here at ApertListserv if you feel the need to vent. BJ has a wonderful mother and father, and I'm glad you got that medication problem all worked out.

Best wishes for you and your family.

Lynn (Boston, MA) ========================================================================= Date: Wed, 28 Jan 1998 21:50:43 -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: The Stroupes <stroupes@IX.NETCOM.COM> Subject: Zach's Fingers & Welcome New Members MIME-Version: 1.0 Content-Type: text/plain; charset="iso-8859-1" Content-Transfer-Encoding: 7bit

Hi all,

Zach's dressing was changed on Monday and the first thing Zach did was to move his fingers (side to side like Mr. Spock). He then smiled and told Judy, "Mom, it's a good thing we did the surgery." He will have a dressing for two more weeks to protect the skin grafts. Zach is already talking about doing the left hand.

Good luck with Blake's surgery.

Denise,

Congratulations on Daryl's surgery. Also, I would like to add that Zach's hand surgeons have all been associated with the Hand Center at UNC Hospitals and his first surgeon referred him immediately for splints when the dressings finally came off to stay. Zach wore his mostly at bedtime. Should not need splints with new fingers.

Marjorie,

Thanks for keeping us up to date on BJ. We were sorry to hear about his downturn. We're glad to hear his fever is easing some. We are praying for each of you. Sometimes, we have to turn our children over to the medical professionals. If you can, try to get a little more rest while he is in the hospital. When Zach went back into the hospital at 4 months of age, it turned out to be blessing for all of us. Your trials and tribulations remind us how fragile each life is and of our own limitations. Keep the faith and remember we all send our love and prayers.

Welcome Parks & Thorquists.

Zach is 8 years old and has had more than 30 surgeries. We just the remaining fingers separated on his right hand. He now has three fingers and a thumb. We do not recommend separating the toes as shoes are currently an issue and Zach walks and runs fine. Hope you find th listserv as beneficial as most of us have.

Maurine,

We tried glasses which hung from a band. Unfortunately, Zach broke them in short order and they have been in a bag in our junk drawer ever since. However, they may work better for some kids and they are another option.

I have rambled long enough.

Take care,

Dan ========================================================================= Date: Wed, 28 Jan 1998 22:02:03 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Mark Smith <dsprado@PENN.COM> Subject: Welcome MIME-Version: 1.0 Content-Type: multipart/alternative; boundary="----=_NextPart_000_00CF_01BD2C38.5D8DB280"

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Hello and Welcome

I just wanted to welcome the Thornquist and Parks family to the = listserv. My name is Michele and my husband name is Mark. We have a 6 = 1/2 year old girl with aperts. Her name is Kayla Jean and we call her = our lit'bit. I think that is how dad spells it. We are from Warren, Pa. = I find the listserv very open and helpful to any and all topics. Again, = welcome to the ever growing family.

Michele

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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 4.72.2106.6"' name=3DGENERATOR> </HEAD> <BODY bgColor=3D#ffffff> <DIV><FONT color=3D#000000 size=3D2>Hello and Welcome</FONT></DIV> <DIV><FONT color=3D#000000 size=3D2></FONT> </DIV> <DIV><FONT color=3D#000000 size=3D2>I just wanted to welcome the = Thornquist and=20 Parks family to the listserv.  My name is Michele and my husband = name is=20 Mark. We have a 6 1/2 year old girl with aperts.  Her name is Kayla = Jean=20 and we call her our lit'bit. I think that is how dad spells it.  We = are=20 from Warren, Pa.  I find the listserv very open and helpful to any = and all=20 topics. Again, welcome to the ever growing family.</FONT></DIV> <DIV><FONT color=3D#000000 size=3D2></FONT> </DIV> <DIV><FONT color=3D#000000 size=3D2>Michele</FONT></DIV> <DIV><FONT color=3D#000000 size=3D2></FONT> </DIV></BODY></HTML>

------=_NextPart_000_00CF_01BD2C38.5D8DB280-- ========================================================================= Date: Wed, 28 Jan 1998 22:08:01 -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: Mark Smith <dsprado@PENN.COM> Subject: Re: Thank you MIME-Version: 1.0 Content-Type: text/plain; charset="iso-8859-1" Content-Transfer-Encoding: 7bit

Dear Karen,

I am sorry I haven't got back with you sooner. I get really busy with work and all. The information you gave me is very helpful. I was so amazed of how many children you work with. What state do you work in? I am just wondering if some state are better than others. We are from Pa. I am planning on taking Kayla to a Rehabilitation Center in Pitts next month for a Ped Compr. Evalu. I am hoping they will give us some more insight. She will be there a whole week. They will do a inpatient to be real through. My advocate feels we will end up in court before long so I want to get all my documentation right. Well I am going to go for know but would like stay in tough with you. I may have some other questions but for know I am going to get some need rest.

Michele ========================================================================= Date: Wed, 28 Jan 1998 22:31:43 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 98-01-28 22:26:41 EST, you write:

<< dsprado@PENN.COM >> Michelle, I work in Illinois, and yes some states are better than others as far as services for people with disabilities are concerned. Illinois is not the best, but its not the worst either. Our education system is workable, but the child needs to have someone advocating for them at all times. Social services are fair, we recently had a terrible blow to early intervention services. The criteria for qualification for services has changed and it is not in the best interest of the children it is supposed to be serving. but thats an ongoing battle that we will keep fighting. Anyway, good luck in your attempt to get good services for your child, and if I can be of any help let me know. Karen Kirby-Hall RN ========================================================================= Date: Wed, 28 Jan 1998 22:36:07 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "Wendy S. Pak" <Wendy_S._Pak@RIDLEY.ON.CA> Subject: Re: Something to share Comments: To: MHTeach102@AOL.COM In-Reply-To: <5cc7016b.34cfe5e1@aol.com> MIME-Version: 1.0 Content-type: text/plain; charset=iso-8859-1 Content-Transfer-Encoding: 8bit

The poem was by Nancye Sims called "A Creed to Live By". I have this peom in one of my Blue Mountain Arts - collection of poems by Susan Polis Schutz. There are a lot of good ones.

Wendy