========================================================================= Date: Wed, 22 Apr 1998 08:11:09 -0400 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Colleen Jones <coljones@PTDPROLOG.NET> Subject: picture request MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit
Please add the Jones Family to the picture request list. I will try to get some of Jacob made so I can send him out too. Still working on a PA summer get together. Any particular weekend good or bad for anyone interested?
Jones Family (Jerold, Colleen, Julianne, Jacob and Jessica) RR 3 Box 275 Middleburg, PA 17842 ========================================================================= Date: Wed, 22 Apr 1998 10:35:31 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Tim <timg@BELLSOUTH.NET> Subject: 2nd update.. pic exchange list.. 3 new addresses added MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
APERT LIST..... Picture Exchange
Rachel Fletcher 3900 Vernon Memphis, Tn 38122
Janine Krebs (Emily) 187 Rhode Island Avenue Massapequa, New York 11758
Andrea Gartner 11394 Royal Tee Cir. Cape Coral, FL 33991
Denise Graham (Daryl) 1030 Fairfield Pike Shelbyville, TN 37160
Ann Luxton and Howard and Amy Esler 6 Peter Mulgrew Street Avondale, Auckland 7 New Zealand
Jennifer Graham 6220 7th Ave North St. Petersburg, FL 33710
Carmen Rae Hill (Mike and Robin Hill) 70 Woodmoor Newnan, Georgia 30263
The Bacon Smith Family 100 Clarendon Road, NW Calgary, Alberta, Canada T2L 0P3
Carol Graves (Nicholas) 370 Oakland Rd Madison, AL 35758
Joanne Lindamood 1533 Regent Avenue Springfield, OH 45503
Raquel Miller (Nicole) 16703 Redwood Way Weston, Fl. 33326
Judy or Nick Amerman 1035 E. Fairview Ave. Morris, Il. 60450
The Sieberts 5226 Walnut Peak Ct. Kingwood, TX 77345
Felipe Ize 124 Brumley # 10 Stillwater, OK 74074
The Jennerjohns 6987 Ridgetop Dr. N E Kiezer, Oregon 97303
The Smith's (Patti, Daniel & Jasmyn) 1538 Morgan Road San Bernardino, CA 92407
Dori Jefferson 83 Pine Lane Murphysboro, IL 62901
The Lynch Family P.O. Box 609 Lake George, NY 12845
Quentin Zaengle 119 Tudor Drive North Wales, PA 19454
The Bailey Family RR 1, Box 74 El Paso, IL 61738
Lynn Thornquist 4 Taylor Road Holliston, MA 01746
Leann Maclean RR 2 Site 4 Box 35 Onoway, Alberta, Canada TOE 1VO
Roxanne Chan 16240 East McGill Road La Mirada, CA 90638
Vivi Zhang 2279 Pinehaven Dr. Niskayuna, NY 12309
Ellen Kelley (Holly) 411 Spring Mill Rd Anderson, IN 46013
Jennie Muggli Rt 1 Box 105C Weimar, TX 78962-9530
Kris Contreras 1422 N. Park Ridge Deer Park, TX 77536
Mark and Michele Smith (Kayla and Megan) 208 Connecticut Avenue Warren, PA 16365
Morgan Kaye McGahan 11 Elsway Road Short Hills, New Jersey 07078
Jones Family (Jerold, Colleen, Julianne, Jacob and Jessica) RR 3 Box 275 Middleburg, PA 17842 ========================================================================= Date: Wed, 22 Apr 1998 11:45:31 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jenngram <Jenngram@AOL.COM> Subject: Re: picture exchange Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Just FYI ....I am officially out of pictures of Jordan and am ordering some reprints. Didn't want anyone to think wasn't responding to them..it'll just be a few weeks..but they'll get there! Sorry for the delay and we are really looking forward to receiving ours in the mail!!
Good luck to Kayla on her surgery..We're thinking of ya'll
Jenn(Tampa/St. Pete) ========================================================================= Date: Wed, 22 Apr 1998 11:49:29 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Irs Nav <IrsNav@AOL.COM> Subject: Re: Hands Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Our son Jonathan b.d. 5-23-96 was also able to keep all of his digits. He can bend his pinkies and the tip of his ring fingers. He was born with the pinkies pretty separate, a separate nail for his first fingers and the shared nail with the middle and ring fingers. His thumbs were separate with a very appropriate web space, although curved out. We are still looking at a forehead remodeling and at the same time placing facial distractors. We canceled this surgery set for March 30 to give a little more time to consider and recover from our shock at Ceci's death. It sounds like Ceci's tragic death was not due directly to the placing of the distractors. Air embolism is rare risk that you take with any surgery including a lot of bone involvement. If anyone has other information I would love to hear more. How is Patrick doing? Thanks Everyone & God Bless-Ann Gentz ========================================================================= Date: Wed, 22 Apr 1998 11:50:09 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jenngram <Jenngram@AOL.COM> Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
AHHH, Dr. Laura is such a riot..My dad is an avid talk radio junkie and whenever we go anywhere forces me to listen..she always seems to be on. If you haven't heard her, tune into your talk radio..somewhere on an AM station. Joanne...you ought to give her a call !!!!! Don't think it hasn't crossed my mind a few times!!!!
Jenn ========================================================================= Date: Wed, 22 Apr 1998 13:25:11 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: ize <ize@TACOMA.CEATLABS.OKSTATE.EDU> Subject: Re: My sister Holly MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Hi Allison, welcome!!!
My name is Claudia and my husband is Carlos. We have(2 1/2 years old) twin boys, Felipe and Rafael. Felipe was born with Apert's. Like your sister, he also has five fingers on each hand. He had surgery on his feet three weeks ago to straighten them. Before the surgery, Felipe had six toes on each foot and now he has five straightened toes on each foot, but they are not separeted. The doctor said that it is not a good idea to have them separeted, because they get wide and it will hurt when he walks, because of he scars. He also said that there is no benefit on doing that. Yesterday he had his long casts off and his feet are looking terrific. Now he has short casts on for three weeks more. We are very happy with the results. The doctor did an amazing job.
Hope to hear more from you! The Ize's from Oklahoma. ========================================================================= Date: Wed, 22 Apr 1998 14:36:42 -0400 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Allison Bledsoe <abledsoe@KIRK.ANDERSON.EDU> Subject: Re: My sister Holly In-Reply-To: <353E3607.4E39@tacoma.ceatlabs.okstate.edu> Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
Hi Claudia,
Holly's toes are also not separate. The doctors have said that she shares one blood vessel for two toes. So if they were to separate them, she would probably loose two toes on each foot. I have never heard of twins born and one of them with Apert's and the is fine. Does Rafael have a greater risk to possibly have a child born with Aperts when he is older?
Allison
At 01:25 PM 4/22/98 -0500, you wrote: >Hi Allison, welcome!!! > > My name is Claudia and my husband is Carlos. We have(2 1/2 years old) >twin boys, Felipe and Rafael. Felipe was born with Apert's. Like your >sister, he also has five fingers on each hand. He had surgery on his >feet three weeks ago to straighten them. Before the surgery, Felipe had >six toes on each foot and now he has five straightened toes on each >foot, but they are not separeted. The doctor said that it is not a good >idea to have them separeted, because they get wide and it will hurt when >he walks, because of he scars. He also said that there is no benefit on >doing that. Yesterday he had his long casts off and his feet are looking >terrific. Now he has short casts on for three weeks more. We are very >happy with the results. The doctor did an amazing job. > > Hope to hear more from you! > The Ize's from Oklahoma. > >
Allison N. Bledsoe Secretary The Office of Multicultural Affairs and International Student Services Anderson University abledsoe@kirk.anderson.edu (765) 641-4193 ========================================================================= Date: Wed, 22 Apr 1998 17:47:45 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: ChMathis <ChMathis@AOL.COM> Subject: Newbies Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Hello, My name is Christina Mathis, mother to Zoey Mathis, 15 months who has Apert Syndrome. We're new to all of this, so we don't know anyone. We'll have fun getting to know everyone though. One question I do have now is if anyone else's child had breathing problems that needed a tracheostomy when their child was young. Zoey has had her trach since she was three weeks old because of the shape of her face, her first cranial vault/distractors surgery wasn't quite successful. Hearing about other kids who have no breathing problems, makes me feel kind of lonely.
thanks, Christina ========================================================================= Date: Wed, 22 Apr 1998 18:49:54 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Patbrat718 <Patbrat718@AOL.COM> Subject: Re: Newbies Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Christina, Hi, My name is Patti, and I'm really new here too. Although my daughter Jasmyn did not go through the trach, we do know of a family out here in CA that did. They are not online, but I can try and hook you up through snail mail if your interested. I think it helps to have as much feedback as possible. If my memory serves me well, Michelle would be about 8 now and she's a darling. ========================================================================= Date: Wed, 22 Apr 1998 19:45:30 -0400 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Mark Smith <dsprado@PENN.COM> Subject: Kayla's Surgery MIME-Version: 1.0 Content-Type: text/plain; charset="iso-8859-1" Content-Transfer-Encoding: 7bit
Hi all.....
Just a short and quick update.....Kayla's surgery went well, about 1 1/2 hours. She has swelling (which is always to be expected), and her mouth is really sore. I talked with her on the phone this evening so that part of her is working fine. She finally was able to get some Jello and so that brightened her spirits up quite a lot. She may even be coming home tomorrow. Just have to wait and see. Thanks for all the messages. Mark ========================================================================= Date: Wed, 22 Apr 1998 16:52:02 -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: Penny Halverson <phalvers@U.WASHINGTON.EDU> Subject: 1998-04-21 Birth Defects Prevention Act (fwd) Comments: To: Crouzon Syndrome Support Group & Other Craniofacial Anomalies <crouzon@u.washington.edu> MIME-Version: 1.0 Content-Type: TEXT/PLAIN; charset=US-ASCII
---------- Forwarded message ---------- Date: Wed, 22 Apr 1998 15:40:26 -0700 From: JoSmiles <JoSmiles@aol.com> To: phalvers@u.washington.edu Subject: 1998-04-21 Birth Defects Prevention Act
Hi Penny, Thought you would like to share this with your group.
Joanne Green Wide Smiles
In a message dated 98-04-22 18:23:15 EDT, you write:
> > President Clinton Signs S. 419 > > > > The Birth Defects Prevention Act of 1998 > > > > The Oval Office > > April 21, 1998 > > > > The President today will sign S. 419, The Birth Defects > > Prevention Act of 1998. This legislation provides authorization for > > surveillance, research, and services aimed at the prevention of > > birth defects. > > > > Presently, there is no reliable regional or nationwide system for > > collecting information on babies born with birth defects, and the > > majority of states have no surveillance or monitoring systems > > capable of tracking the occurrence of such events. This lack of data > > and information greatly impedes the development of prevention > > programs. > > > > This bill also provides authorization for the expansion and > > improvement of existing state birth defects registries, and for > > technical assistance for new registries in states that wish to create > > them. S. 419 passed the Senate by voice vote on June 6, 1997 and > > passed the House by a vote of 405-2 on March 10, 1998. > > > > Senator Kit Bond (R-MO) is the lead Senate sponsor and Rep. > > Solomon Ortiz (D-TX) is the lead House sponsor of this legislation. > > > > Other members of Congress attending this event include: Sen. Kit > > Bond (R-MO) (Sponsor); Sen. Bill Frist (R-TN); Sen. Jim Jeffords > > (R-VT); Sen. Tom Harkin (D-IA); Rep. John Dingell (D-MI), Rep. > > Solomon Ortiz (D-TX) (Sponsor), Representative Henry Bonilla (R-TX). > > > > The March of Dimes, which played a leading role in supporting > > this legislation and is celebrating its 60th Anniversary, will be > > represented by their Dr. Jennifer Howse, President; Dr. Marina > > Weiss, Vice President; and by their National Ambassador, T.J. > > Stallbaumer of Rogers, Arkansas. T.J., who will be attending with > > his family, was born 4 months early and weighed 1.4 pounds. After > > intensive care and breathing therapy, T.J. is a healthy and active 5 > > year old. As National Ambassador, T.J. will be traveling across the > > country this year promoting the mission of the March of Dimes: > > preventing birth defects. > > > > Additional participants include Ann Langley, National > > Association of Children's Hospitals; Kathy McGinley, The Arc; > > Mohammad N. Akhter, American Public Health Association; Kerilyn > > Frich, American Academy of Pediatrics; and Roberta Carlin, Spina > > Bifida Association of America. > > > > ### > > ========================================================================= Date: Wed, 22 Apr 1998 21:03:36 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Copperhd87 <Copperhd87@AOL.COM> Subject: Fwd: Thought you'd like this.. Comments: cc: fish@inet.att.co.kr Mime-Version: 1.0 Content-type: multipart/mixed; boundary="part0_893293417_boundary" Content-Transfer-Encoding: 8bit
This is a multi-part message in MIME format.
--part0_893293417_boundary Content-ID: <0_893293417@inet_out.mail.aol.com.1> Content-type: text/plain; charset=US-ASCII
--part0_893293417_boundary Content-ID: <0_893293417@inet_out.mail.aol.com.2> Content-type: message/rfc822 Content-transfer-encoding: 7bit Content-disposition: inline
From: BJPOKCOK <BJPOKCOK@aol.com> Return-path: <BJPOKCOK@aol.com> To: Copperhd87@aol.com Subject: Thought you'd like this.. Date: Tue, 21 Apr 1998 22:57:21 EDT Organization: AOL (http://www.aol.com) Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
,-=;?uc;`????=n, ;cr=?{?{?{?c;3b;;"c .} b$$$b4-';;L3e;?;?r 4"u $$$$$$$u^/;uh`$u);lr :c 3c=$$P""$e.x.;?cu;;. ,nMMMMMMMP= "e. $$.,,3$$b u4;/ xMMTTCMMM=- d `\. $$???$$$$$$$->" . .nx4MMETMMMM= J ". ?, d$$P" ,c$$$$$c. 4MMCCCMnn, x" `\. `"??",d$$$$$$$$$$$$ MMTTC3M"` 4F J, ,$$$$$$$$$$$$$$$$$.""""?? $ _,-' .c$$$$$$$$$$$$$$$$$$$$$$$u `R$._,-' .,$$$$$$$$$$$$$$PF ,ze,<$$$$$$ _-'z$$$$$$$$$$$$$PF' c$$d d$$$$$$$$$$$ __,-' '?$$$$F t 4$;'d$$$$$$$$$$$$$; z4 ,u `. `''d$$$$$$$$$$$$$$$h $ ( c$$$$$$$$$$$$$$$$$$b. "n,_ `. <$$$$$$$$$$$$$$$$$$$$$$c `"?c,_ t $"$$$$$$$$$$$$$$$$$$$$$$. ""q $$$$$$$$$$$$$"?$$$$$$$$$$. ^ ?$$$$$$$P",c$$$$$$$$$$$$ ?$$$$F c$$$$$$$$$$$$$$$ u$$c.`" $$$$$$$$$$$$$$$$" $$$$$$$ $$$$$$$$$$$$$$$F $$$$$$$ $$$$$$$$$$$$$P" $$$$$$$$ $$$$$$$$$$P" d$$$$$$$b $$$$$$$$$$$$c J$$$$$$$$c ?$$$$$$$$$$$$u$$c $$$$$$???" =c$$$$$$$$P$$$P $$$$$$$$F " z$$$$ <$$$$$$$c c$$$$$ $$$$$$$% " " `$$$$$" _,ue$$$$$$c ^`????" `"??"
Here is an angel sent to watch over you... in order for her to work you must pass this on to the people you want watched over...
Friends Are Like Angels
Our friends are like angels, Who brighten our days. In all kinds of wonderful, Magical ways.
Their thoughtfulness comes, As a gift from above. And we feel we're surrounded, By warm, caring love.
Like upside-down rainbows, Their smiles bring the sun. And they fill ho-hum moments, With laughter and fun.
Friends are like angels, Without any wings. Blessing our lives, With the most precious things.
--part0_893293417_boundary-- ========================================================================= Date: Wed, 22 Apr 1998 20:13:22 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: ize <ize@TACOMA.CEATLABS.OKSTATE.EDU> Subject: Re: pictures exchange MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
We are waiting to have Felipe's casts off and then we will have a recent picture of him and his twin brother to send to you. It is going to take three more weeks. We've alredy made all the envelopes with all the addresses given so far. We are looking forward to see your picture in our mail box.
Thank you, The Ize's. ========================================================================= Date: Wed, 22 Apr 1998 20:13:27 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: ize <ize@TACOMA.CEATLABS.OKSTATE.EDU> Subject: Re: My sister Holly MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Hi Allison,
Rafael is not at any risk of having a child with Apert's, just because he was born with Felipe that is affected by the syndrome. They are fraternal twins, they didn't share the same bag inside of my uterus. The chances of having a child with Apert's for people who are not affected by Apert's are 1 out of 160,000 born child . Now, Felipe's case is different, because he has the syndrome himself, the chances are 50% to have a child like him. It is like you and your sister, it doesn't mean that you are going to have a child with Apert's just because your sister have Apert's. I hope I have answered your question.
Claudia.
>Hi Claudia,
>Holly's toes are also not separate. The doctors have said that she shares >one blood vessel for two toes. So if they were to separate them, she >would probably loose two toes on each foot. I have never heard of twins >born and one of them with Apert's and the is fine. Does Rafael have a >greater risk to possibly have a child born with Aperts when he is older?
>Allison ========================================================================= Date: Wed, 22 Apr 1998 21:28:07 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: MHTeach102 <MHTeach102@AOL.COM> Subject: An Update Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
hello from the ranch,
hi everyone LONG time no see. Wanted you all to know that BJ is finally home now. We brought him home this afternoon. 5 days later than planned but that is ok. BJ is stable now and the doctors have told that he SHOULD be out of danger from anymore setbacks related to this past illness. It will take some time before we know just how much if any of his body control, memory, or movements he will recover or rebuild. Right now we are just celebrating having him home with us.
Next week we will have to sit down and look at hiring a case manager to help us through all the therapies and red tape. He is attempting to communicate with us now by using a communication board though it is still hard for him. But he still is trying. Well I need to go we have a nurse 24 hours a day for 3 days so I am going to use this time to sleep. I am so tired I don't even know how I kept going this past month. I want to thank each of you for continued prayers and well wishes.
Well the doctors said the easy part is over and now the HARD part begins. I hope they are joking, but even if they aren't if we can survive the past 9 months of this then Both BJ and I will be ok.
Marjorie Harmon ========================================================================= Date: Wed, 22 Apr 1998 21:34:19 +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: Kayla's Surgery
Mark,
I was relieved to hear Kayla's surgery went well. Tell Michele I'm thinking of you all!
I have lost track of all of the new families, but please know I am thrilled to have you all joining our big huge family! I'm a 33 year old adult with Apert's. Ask questions!!! I'm not an expert, but have experience to share!!
Second interview was okay. Should know by Friday??
Mom called tonight. I wasn't home, she left a message. She's putting the "responsibility" of the tension onto me. grrrr.
Joanne
_____________________________________________________________________ You don't need to buy Internet access to use free Internet e-mail. Get completely free e-mail from Juno at http://www.juno.com Or call Juno at (800) 654-JUNO [654-5866] ========================================================================= Date: Wed, 22 Apr 1998 21:47:32 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: LUVS2WRTE <LUVS2WRTE@AOL.COM> Subject: Re: 1998-04-21 Birth Defects Prevention Act (fwd) Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
YESS!!!!! ========================================================================= Date: Wed, 22 Apr 1998 22:36:10 -0400 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: foster <foster@ICONTECH.COM> Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
Way to go BJ. What great news to hear that you are back home.
Also good to hear that Kayla did so well. We will keep our fingers crossed that you can came home tomorrow.
Billy had a checkup today with his heart doctor and everything checked out fine. He has to have these checkups every six months and I am always very nervous.
Seems like we are all on a roll. Good things are happening. Feels great.
Welcome to all of the new families and hope everyone is having as good of a day as we are. Hope everyone who has had any surgeries are recovering well.
Fosters (PA)
PS..Hope Amy is doing well since she had her grommets put in! I just love that word grommets it seems so much more classy than tubes.. ========================================================================= Date: Thu, 23 Apr 1998 00:04:49 -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: cal <cal@PHOENIX.NET> Subject: Re: 3nd update.. pic exchange list.. 4th new addresses added MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Tim wrote: > > APERT LIST..... Picture Exchange > > Rachel Fletcher > 3900 Vernon > Memphis, Tn 38122 > > Janine Krebs > (Emily) > 187 Rhode Island Avenue > Massapequa, New York 11758 > > Andrea Gartner > 11394 Royal Tee Cir. > Cape Coral, FL 33991 > > Denise Graham > (Daryl) > 1030 Fairfield Pike > Shelbyville, TN 37160 > > Ann Luxton and Howard and Amy Esler > 6 Peter Mulgrew Street > Avondale, Auckland 7 > New Zealand > > Jennifer Graham > 6220 7th Ave North > St. Petersburg, FL 33710 > > Carmen Rae Hill (Mike and Robin Hill) > 70 Woodmoor > Newnan, Georgia 30263 > > The Bacon Smith Family > 100 Clarendon Road, NW > Calgary, Alberta, Canada > T2L 0P3 > > Carol Graves > (Nicholas) > 370 Oakland Rd > Madison, AL 35758 > > Joanne Lindamood > 1533 Regent Avenue > Springfield, OH 45503 > > Raquel Miller > (Nicole) > 16703 Redwood Way > Weston, Fl. 33326 > > Judy or Nick Amerman > 1035 E. Fairview Ave. > Morris, Il. 60450 > > The Sieberts > 5226 Walnut Peak Ct. > Kingwood, TX 77345 > > Felipe Ize > 124 Brumley # 10 > Stillwater, OK 74074 > > The Jennerjohns > 6987 Ridgetop Dr. N E > Kiezer, Oregon 97303 > > The Smith's (Patti, Daniel & Jasmyn) > 1538 Morgan Road > San Bernardino, CA 92407 > > Dori Jefferson > 83 Pine Lane > Murphysboro, IL 62901 > > The Lynch Family > P.O. Box 609 > Lake George, NY 12845 > > Quentin Zaengle > 119 Tudor Drive > North Wales, PA 19454 > > The Bailey Family > RR 1, Box 74 > El Paso, IL 61738 > > Lynn Thornquist > 4 Taylor Road > Holliston, MA 01746 > > Leann Maclean > RR 2 Site 4 Box 35 > Onoway, Alberta, Canada > TOE 1VO > > Roxanne Chan > 16240 East McGill Road > La Mirada, CA 90638 > > Vivi Zhang > 2279 Pinehaven Dr. > Niskayuna, NY 12309 > > Ellen Kelley > (Holly) > 411 Spring Mill Rd > Anderson, IN 46013 > > Jennie Muggli > Rt 1 Box 105C > Weimar, TX 78962-9530 > > Kris Contreras > 1422 N. Park Ridge > Deer Park, TX 77536 > > Mark and Michele Smith (Kayla and Megan) > 208 Connecticut Avenue > Warren, PA 16365 > > Morgan Kaye McGahan > 11 Elsway Road > Short Hills, New Jersey 07078 > > Jones Family (Jerold, Colleen, Julianne, Jacob and Jessica) > RR 3 Box 275 > Middleburg, PA 17842
LeCara Family (Sarah, Tamara Charles 8907 Gayguin Houston,Texas 77088 ========================================================================= Date: Wed, 22 Apr 1998 21:29:20 -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: Lark Jarvis <lark@INVOLVED.COM> Subject: Joanne In-Reply-To: <19980421.212436.10294.1.chanan8@juno.com> Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
Hi Joanne,
Sorry it's taken me so long to answer this . . .
Wow, I'm really sorry you're in this situation. I have to agree with your friends--I'm glad you were in separate cars and could leave, too.
THe thing that comes up off the top of my head is, alcoholism is a disease that doesn't just affect the person who's drinking, but the whole family system. It's good, I guess, that you don't have a whole lot invested in keeping this guy your friend, etc etc etc, but the bad part is, his being married to your mom affects her much more than she probably realizes, and that in turn unfortunately affects you . . .
Have you thought about getting hooked up with a 12-step group of some kind for families of people with alcoholism? There are some things that 12-step groups espouse that I don't necessarily buy, but they do have some really good ideas about how to deal with patterns around alcoholism, behaviors of family members married to them, etc.
BTW, I actually started doing some emotional work around my cleft and the surgeries when I was attending a 12-step group back in college--noone really had much of a clue what I was talking about (not knowing anything about facial anomalies), but (mostly because of the structure of the group, which I think is real genius, the way it's set up), it was one of the first somewhat safe places I found to start mentioning my cleft, and how that played itself out in the family system, and all that. Turned out that the cleft was part of a whole family system that involved alcoholism (my grandfather) and a sort of intense kind of religious addiction (my other grandfather . . .). Complicated, in other words . . .
It heavily depends on the individual group and the town involved (and each individual group has very different personalities), but there are lots of different 12-step groups with different focuses (Al-Anon for families of alcoholics, ACOA for adult children of, CODA for codependents, etc etc). Might be interesting to just check into, if for no other reason than to see that the behavior that's affecting your mom has really predictable patterns, and there are some ways of dealing with it that seem to work . . . Anyway, that's just what comes to mind--as they say in 12-step groups, "take what you like and leave the rest!" Hope you get positive news about the job soon, Lark ========================================================================= Date: Thu, 23 Apr 1998 00:08:56 -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: cal <cal@PHOENIX.NET> Subject: Re: 3nd update.. pic exchange list.. 4th new addresses added MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
cal wrote: > > Tim wrote: > > > > APERT LIST..... Picture Exchange > > > > Rachel Fletcher > > 3900 Vernon > > Memphis, Tn 38122 > > > > Janine Krebs > > (Emily) > > 187 Rhode Island Avenue > > Massapequa, New York 11758 > > > > Andrea Gartner > > 11394 Royal Tee Cir. > > Cape Coral, FL 33991 > > > > Denise Graham > > (Daryl) > > 1030 Fairfield Pike > > Shelbyville, TN 37160 > > > > Ann Luxton and Howard and Amy Esler > > 6 Peter Mulgrew Street > > Avondale, Auckland 7 > > New Zealand > > > > Jennifer Graham > > 6220 7th Ave North > > St. Petersburg, FL 33710 > > > > Carmen Rae Hill (Mike and Robin Hill) > > 70 Woodmoor > > Newnan, Georgia 30263 > > > > The Bacon Smith Family > > 100 Clarendon Road, NW > > Calgary, Alberta, Canada > > T2L 0P3 > > > > Carol Graves > > (Nicholas) > > 370 Oakland Rd > > Madison, AL 35758 > > > > Joanne Lindamood > > 1533 Regent Avenue > > Springfield, OH 45503 > > > > Raquel Miller > > (Nicole) > > 16703 Redwood Way > > Weston, Fl. 33326 > > > > Judy or Nick Amerman > > 1035 E. Fairview Ave. > > Morris, Il. 60450 > > > > The Sieberts > > 5226 Walnut Peak Ct. > > Kingwood, TX 77345 > > > > Felipe Ize > > 124 Brumley # 10 > > Stillwater, OK 74074 > > > > The Jennerjohns > > 6987 Ridgetop Dr. N E > > Kiezer, Oregon 97303 > > > > The Smith's (Patti, Daniel & Jasmyn) > > 1538 Morgan Road > > San Bernardino, CA 92407 > > > > Dori Jefferson > > 83 Pine Lane > > Murphysboro, IL 62901 > > > > The Lynch Family > > P.O. Box 609 > > Lake George, NY 12845 > > > > Quentin Zaengle > > 119 Tudor Drive > > North Wales, PA 19454 > > > > The Bailey Family > > RR 1, Box 74 > > El Paso, IL 61738 > > > > Lynn Thornquist > > 4 Taylor Road > > Holliston, MA 01746 > > > > Leann Maclean > > RR 2 Site 4 Box 35 > > Onoway, Alberta, Canada > > TOE 1VO > > > > Roxanne Chan > > 16240 East McGill Road > > La Mirada, CA 90638 > > > > Vivi Zhang > > 2279 Pinehaven Dr. > > Niskayuna, NY 12309 > > > > Ellen Kelley > > (Holly) > > 411 Spring Mill Rd > > Anderson, IN 46013 > > > > Jennie Muggli > > Rt 1 Box 105C > > Weimar, TX 78962-9530 > > > > Kris Contreras > > 1422 N. Park Ridge > > Deer Park, TX 77536 > > > > Mark and Michele Smith (Kayla and Megan) > > 208 Connecticut Avenue > > Warren, PA 16365 > > > > Morgan Kaye McGahan > > 11 Elsway Road > > Short Hills, New Jersey 07078 > > > > Jones Family (Jerold, Colleen, Julianne, Jacob and Jessica) > > RR 3 Box 275 > > Middleburg, PA 17842 > > LeCara Family (Sarah, Tamara Charles > 8907 Gauguin > Houston,Texas 77088 ========================================================================= Date: Thu, 23 Apr 1998 01:25:42 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Thornq <Thornq@AOL.COM> Subject: Re: My sister Holly Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Allison,
Welcome to our family. We are always excited to meet new people. If you haven't already visited Teeter's Page, you should, you will meet alot of us. Unfortunately, I have not yet sent Don a picture and story of Andrew, but I will shortly. Sorry Don, but time just gets away from me. We started with this family in late January of this year. It has been a true savior for me, and I truly believe that my marriage is better because of these wonderful people. Not that I have talked to them about that, but because I have someone to talk to who understands, I am able to vent sometimes. It has been a long time since I have done that, but I'm sure it will come soon. Your sister sounds like a wonderful little girl and good luck in elementary school. Please let your mother know that there are people out there to talk to. Feel free to give her my address and ask her to join our picture exchange with us.
Welcome to Holly and her family!
Lynn Thornquist 4 Taylor Road Holliston, MA 01746 Thornq@aol.com ========================================================================= Date: Thu, 23 Apr 1998 01:32:01 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Thornq <Thornq@AOL.COM> Subject: Re: Picture request/Welcome Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Rachel,
Yes, you did send me a picture and might I say that you both make a wonderful couple. An excellent picture!!!!!! Thank you!
Lynn ========================================================================= Date: Thu, 23 Apr 1998 02:21:03 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Thornq <Thornq@AOL.COM> Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
GOOD LUCK JOANNE!!!!!!
Lynn ========================================================================= Date: Thu, 23 Apr 1998 02:55:02 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Thornq <Thornq@AOL.COM> Subject: Re: An Update Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Marjorie,
That update brought tears to my eyes. So glad that you have your precious BJ home with you. It will probably be an uphill battle, but there will be ease somewhere down the road. You are a strong person and remember that we are always here for you. Good luck and talk to you real soon. Love to the whole Harmon family!
Lynn ========================================================================= Date: Thu, 23 Apr 1998 07:25:25 -0400 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Mark Smith <dsprado@PENN.COM> Subject: Kayla MIME-Version: 1.0 Content-Type: text/plain; charset="iso-8859-1" Content-Transfer-Encoding: 7bit
Just a short note. Got a phone call around 5:30am. Kayla was not feeling well. Had not taken any of her pain medicine. So I got to talk her "into" it. Said she wants to stay at the hospital another day. She is eating Jello regularly so I think she is just feeling under the weather a little because of all of this. (nothing new there) So we will have to wait and see how she feels later today to tell if she is coming home today or tomorrow. Nothing else new to report there. Everyone have a great day. Mark ========================================================================= Date: Thu, 23 Apr 1998 08:30:49 -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: JMuggli <jmuggli@CVTV.NET> MIME-Version: 1.0 Content-Type: text/plain; charset="us-ascii" Content-Transfer-Encoding: 8bit
So happy to hear BJ is home and on the road to recovery! Marjorie, GET SOME SLEEP!
Kayla keep eating Jello! Come home soon!
Joanne-- Hang in there. Hope you hear good news Friday.
Christina Mathis and Zoey Welcome!! My granddaughter Sarah LeCara has had apnea since birth. She was born with very tiny if any nasal passages. She breathed through her mouth. She was feed with an OG Tube for eight months before the doctor's decided to have a trache. She would throw up a great deal. That was a nightmare because you had to put the OG tube back down her throat. (Even though the tube had a weight on it!) That is something I thought I could never do, but you find out real quick, you'd better learn!! She had the trache in December and she did not need the OG Tube anymore. And her saturation levels are in the high 90's. She still has all the monitors and etc... Everytime she enters the hospital for surgery, after the surgery is over it takes about 24 hours before she is off of the oxygen. She had her first hand surgery Monday the 20th. She was scheduled to be an outpatient but she sats were too low again. She stayed over night. She is doing great. ! I know the trache is a lot of wo rk and care, but I think it has made a world of difference in Sarah's Growth and Breathing. The doctor's think she will have the trache until she is 4 or 5. Hang in there Mom.... There is light at the end of the tunnel!
Love to all, Sarah's Nana Jennie Muggli ========================================================================= Date: Thu, 23 Apr 1998 08:34:37 -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: Allison Bledsoe <abledsoe@KIRK.ANDERSON.EDU> Subject: Re: My sister Holly In-Reply-To: <353E95B7.2C1A@tacoma.ceatlabs.okstate.edu> Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
Hi Claudia,
Thanks for the answer. I appreciate it.
Allison
At 08:13 PM 4/22/98 -0500, you wrote: >Hi Allison, > > > > Rafael is not at any risk of having a child with Apert's, just because >he was born with Felipe that is affected by the syndrome. They are >fraternal twins, they didn't share the same bag inside of my uterus. > The chances of having a child with Apert's for people who are not >affected by Apert's are 1 out of 160,000 born child . Now, Felipe's case >is different, because he has the syndrome himself, the chances are 50% >to have a child like him. It is like you and your sister, it doesn't >mean that you are going to have a child with Apert's just because your >sister have Apert's. > I hope I have answered your question. > > Claudia. > > > > > >>Hi Claudia, > >>Holly's toes are also not separate. The doctors have said that she shares >>one blood vessel for two toes. So if they were to separate them, she >>would probably loose two toes on each foot. I have never heard of twins >>born and one of them with Apert's and the is fine. Does Rafael have a >>greater risk to possibly have a child born with Aperts when he is older? > >>Allison > >
Allison N. Bledsoe Secretary The Office of Multicultural Affairs and International Student Services Anderson University abledsoe@kirk.anderson.edu (765) 641-4193 ========================================================================= Date: Thu, 23 Apr 1998 09:32:56 -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: NEWBIES MIME-version: 1.0 Content-type: text/plain; charset="us-ascii"
WELCOME...Christina and Zoey. Glad to see another family join ours. My son Daryl is 2 years old. We didn't have breathing problems excepts at birth, but there are several on this listserv that have or had trachs. Give them time and they will be able to respond to you. God Bless!
PS. Where are you from? We are from Shelbyville, TN.
Denise Graham ========================================================================= Date: Thu, 23 Apr 1998 11:33:04 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jenngram <Jenngram@AOL.COM> Subject: Re: Newbies Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Christina, My name is Jennifer Graham, my son Jordan is 7 mos. old..and while he didn't need a trac , there are quite a few families on here whose children did require one. i am sure you sill be hearing from them..In the meantime welcome to the group..I am sure you will love it here as much as I have.
Jenn(Tampa/St.Pete) ========================================================================= Date: Thu, 23 Apr 1998 11:17:51 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Judy Amerman <jamerman@UTI.COM> Subject: pictures MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit
Hi, I was just outside cutting grass and realized that the mail had come. Just wanted to say that pictures started arriving today. Boy Jenn, are you on the ball. I do not remember who came up with this idea but I think it is going to be fun. I was not even thinking of these pictures when I went to the mailbox but the first thing I seen was a St.Pete address and I wasjust thrilled to get this. You can tell that Jordan is not camera shy. He looks like a little flirt. Is he? I think I am also going to do the map and picture thing and keep it by the computer. This is really going to help everyone when they try to visualize these kids and adults when being discussed on the listserv. My pictures of Nick will be a few weeks but will definitely make their way out. Judy ========================================================================= Date: Thu, 23 Apr 1998 12:35:42 -0400 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: foster <foster@ICONTECH.COM> Subject: Pictue exchange Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
We would also like to be a part of the pictue exchange.
Foster Family 1335 Sanderson Ave Scranton,Pa 18509 ========================================================================= Date: Thu, 23 Apr 1998 13:49:58 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jenngram <Jenngram@AOL.COM> Subject: Re: Pictue exchange Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Glad the pictures are making their way to the respective places..My mail service is a bit off down here..seems half of the pictures I have sent came back requiring more postage?????? But the others have obviously made it???? Who knows, but I'm off to pick a fight..and yes that little guy of mine is quite a flirt..just like his dad...he loooooves beiing the center of attention..which works well w/ picture taking..The other pictures will be on their way once I a) deal w/ the post office and b) get some reprints for the remaining ones to be sent out. My attention span is that of Jordans so I had to go ahead and get tem out before got sidetracked..which often happens..just ask Joe the last time I cooked dinner out of how many times I took something OUT to cook..Short attention span!!!!!!
enjoy the pictures..I'll be checking my mailbox!!!
jenn(Tampa/St. Pete) ========================================================================= Date: Thu, 23 Apr 1998 14:07:06 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Camous <Camous@AOL.COM> Subject: Re: An Update Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Bravo for BJ and the whole Harmon clan. Y'all continue to be an inspiration!
> look at hiring a case manager< Really, your insurance company should provide this service in regard to the hospitals, bills etc. Also, the state/federal programs also provide this service in relationship to the therapy needs/ SSI/etc. Check into this before you spend your own $$ on this "service". Maybe some of you from Texas have more specifics about how it is accomplished there but your local public assistance office may be a place to start.
Marianne ========================================================================= Date: Thu, 23 Apr 1998 15:11:30 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jenngram <Jenngram@AOL.COM> Subject: Re: An Update Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
I''m so glad ot hear BJ made it home..and I know ya'll are too. I can't even imagine how exhausted ya'll must be..So get some rest and take care of yourself.
Ya'll continue to be in our thoughts and prayers
Congratulations again, on BJs homecoming..he continues to be an inspiration to all..
Jenn(Tampa/St. Pete) ========================================================================= Date: Thu, 23 Apr 1998 15:04:38 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Tim and Carol <timg@BELLSOUTH.NET> Subject: pics MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Jenn,
Just got the pic of Jordan in the mail.. it is great !!! Thanks ! Nicholas' will be going out early next week...
Carol Graves ========================================================================= Date: Thu, 23 Apr 1998 14:56:46 -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: Laurie Ann Bailey <jkb@ELPASO.NET> Subject: Pictures MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Hey gang:
As soon as I finish this roll of film which has the most recent pictures of Jacob and Jordan, I'll get my pics out to you all. Can't wait to see all these special children. I also like the map idea and may start one for Jake.
Talk to you soon!! :) Laurie Bailey jkb@elpaso.net ========================================================================= Date: Thu, 23 Apr 1998 16:52:19 -0400 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: ROBIN L HILL <CARMENRAE@PRODIGY.NET> Subject: Re: Kayla's Surgery MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit
We are so glad to hear Kayla's surgery went well. We'll be thinking of you in the coming days. Mike, Robin, and Carmen Rae Hill
---------- > From: Mark Smith <dsprado@PENN.COM> > To: APERT@LISTSERV.AOL.COM > Subject: Kayla's Surgery > Date: Wednesday, April 22, 1998 7:45 PM > > Hi all..... > > Just a short and quick update.....Kayla's surgery went well, about 1 1/2 > hours. She has swelling (which is always to be expected), and her mouth is > really sore. I talked with her on the phone this evening so that part of > her is working fine. She finally was able to get some Jello and so that > brightened her spirits up quite a lot. She may even be coming home > tomorrow. Just have to wait and see. Thanks for all the messages. > Mark ========================================================================= Date: Thu, 23 Apr 1998 17:13:34 -0400 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: ROBIN L HILL <CARMENRAE@PRODIGY.NET> Subject: Various MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit
Welcome to all our new families! We are Mike and Robin Hill. Our daughter, Carmen Rae, has Apert Syndrome. She is 3 months old and just had a shunt put in for hydrocephalus a week ago. Her cranial surgery has been moved up to June 12 from July 21, so we are trying to prepare...... We live in Newnan, Georgia which is about 30 miles southwest of Atlanta. We have been on the listserver since the end of January or early February and let me tell you it is GREAT! We were so lucky to find this family soon after Carmen's birth; we can't imagine getting through all of this without our support family!!!!!!
We were soooooo glad to hear BJ is home! We will continue to pray for this little trooper!
Jennifer, Carmen Rae got Jordan's picture today and she babbled something that sounded like "BOYFRIEND!" She thinks he is soooooo cute; and hey he's not too far from us either!!!!
Hope everyone is doing well!
Mike, Robin, and Carmen Rae Hill ========================================================================= Date: Thu, 23 Apr 1998 19:13:27 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: LUVS2WRTE <LUVS2WRTE@AOL.COM> Subject: Re: Pictures Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Hi gang,
To me, seeing these pictures will be interesting in two ways. First, and most important, I can see all the beautiful special faces, and faces of the parents, and secondly, it will be interesting to see even though the different severities of Apert Syndrome, and those before or after surgery.
Glad to hear things are going well for everyone, Especially B.J. The Kliner Family is still in my thoughts,
-Andrea ========================================================================= Date: Thu, 23 Apr 1998 20:14:22 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Thornq <Thornq@AOL.COM> Subject: Pictures Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Hello All,
I will sending out my pictures of Andrew very shortly, but like some others out there, I'm finishing up a roll of film first which has most recent pictures. I am also going to try and send out as many family pictures as possible. We just had them done around Christmas. I don't have many left, but will see. So it will be about a week before I start sending mine. Can't wait to get everyone elses.
Just a little hurdle we overcame in this household. Andrew is really doing well at his walking now, but still has some delays in the speech area. But we have finally been graduated in PT from once a week to once every other week. His PT says that she is extremely pleased with his progress and strength. It is great that things are starting to get better around here.
I also have a question for all of you. All of Andrews fingers are separated, but his pointer fingers on both hands are really starting to point outwards, kind of curl or bend if you will. Dr. Upton has told us that he would straighten it when he does the thinning of his fingers, but I don't think it should wait. It is getting worse and I don't want it to interfere with his fine motor skills. Has anyone else had this problem? His middle finger on his left hand is getting much wider and has a little more bone in some areas than most. That will be done when he is three as well, but it is concerning me. Just one more thing.....Andrews toenails now are looking like they are getting cracks in them going across the nail. This has just started since his ingrown toenails were removed. I guess I have alot of questions to be answered. Thanks to all in advance. Talk to you all later.
Good luck to all of those anticipating surgery and hope those of you who are recovering are doing well. Love to all!
Lynn Thornquist ========================================================================= Date: Thu, 23 Apr 1998 20:19:58 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: CoH 1862 <CoH1862@AOL.COM> Subject: Re: picture request.. Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
I would also like to have pictures for Mallory's book. I will also send pics.
Diane Youngblood 445 Horne Hollow Rd. Culleoka, Tn. 38451 ========================================================================= Date: Thu, 23 Apr 1998 20:36:35 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Yonstein <Yonstein@AOL.COM> Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Hello all:
First of all I wanted to welcome BJ home. You all must be so happy to finally have him home with you. And it must feel good to be back home in your own bed, Marjorie. Hope you and David are trying to get some rest.
Welcome to Christina and Zoey Mathis. My name is Janine Krebs, my husband is Brian and I have two children, Nicholas 3 and a half and Emily 9 months (with Aperts) Emily hasn't had a trache so I can't help you with any info on that, but I know that there are families who can. BTW where are you from? I am sure you will find this list and supportive and helpful as I have.
Best wishes to all,
Janine ========================================================================= Date: Thu, 23 Apr 1998 20:39:52 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Yonstein <Yonstein@AOL.COM> Subject: PA get-together Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Hey, count the Krebs family in. I can't wait to meet some of you from this neck of the woods. I figure there is at least 8 to 10 families in this area on this list that would be close enough to get together for a weekend.
As far as our schedules go, August would probably be a better time for us than July, except for the weekend of the 22nd and 23rd. July is kind of hectic already with a mini vacation planned and Emily's first birthday. I can't believe I am talking about that already. The time does fly by.
Anyway, are you talking about a get-together at a place for the weekend like a hotel or just something for a day? Let me know and if I can do anything to help it along.
Take care,
Janine Yonstein@aol.com ========================================================================= Date: Thu, 23 Apr 1998 20:42:10 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Yonstein <Yonstein@AOL.COM> Subject: Vitamin Therapy Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
This is an update for any of you interested in the info I gave about Nutrichem.
I have been in touch with their Health Information Officer there and am paying to have them do research specifically related to Apert Syndrome to see if there might be some benefits to it. If she cannot get good info they will also use their biochemists to help break it down.
Anyway, she said it would take about a 10 day to 2 week period. I will keep you posted about the results of the search.
Janine ========================================================================= Date: Thu, 23 Apr 1998 21:08:57 +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>
Dear Family,
It was wonderful to hear of BJ's homecoming!! We ARE on a roll here, a lot of neat things are happening and great news!!
Well, my anticipation is over! I found out TODAY that I got the job!!! Hooray! Hooray! Thanks to all of you for your support!! I could not believe they actually had the nerve to call me at my current place of employment! I was a basket case trying to maintain my composure!! I will give my notice on Monday and probably take some time for myself. It's been hectic at work as of late and with the family problems, I need some R&R!
I just started thinking of the luxuries I will be able to afford now that I have had to live without for the past year.
Only to be rid of this nasty cold my family gave to me!! I would be on cloud nine!
Take care! 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: Thu, 23 Apr 1998 21:53:18 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: ChMathis <ChMathis@AOL.COM> Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Thanks to everyone for welcoming us! We are from San Antonio in the great state of Texas. To Marjorie: Being new, I don't know what's going on with you son, but my daughter, Zoey was in the hospital, more than out for the first year of her life, and is delayed. The good news is that she has been healthy since January (with the exception of this little cold she is fighting now) and is really starting to catch up. My heart goes out to these babies/children with health problems. The accomodation for Moms/Dads at our hospital are not the greatest.
To Patti: Any information would be great!
To Lynn: I'm not an expert, but I remember reading about Apert fingers, that some have extra calcium in the little joints, which makes them grow out to the side. I think it's not guaranteed that all of these children will have this, but possible. Zoey's pinky looks like it's going to grow off to the side. Modern technology will probably come up with something for this.
To All: Thanks again for having us, I'm very glad I found out about this through Zoey's genetisist. Bye. Talk to you soon!
Christina, Zoey (and big sister Tia) ========================================================================= Date: Thu, 23 Apr 1998 22:05:45 -0400 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jack and Raquel <jara1@BELLSOUTH.NET> Subject: Pictures, Congrats, Welcome MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Hi there everyone,
I just want to say that we too will be taking a roll of pictures this weekend and will get them developed A.S.A.P. and start sending them out to everyone.
Congratulations Joanne on your new job I know things will be great for you and do take some time off, you never know when you will be able to do that again.....
Again I want to welcome the new families to our family, it's the best place to be....
Margorie and David so glad to hear that B.J. is home as always we are always thinking of you....
Well it's getting down to the wire for us, Nicole's first surgery is only two weeks from today. My job is having a blood drive on Tuesday in her honor, there are over 50 people that have signed up and thats not counting the walk ins, I think it's wonderful everyone is being so supportive. Nicole has my blood type so of course one of the units will be mine but we are also setting aside 6 other units just in case, we were told she would probably need around 3 but to have at least 6 or 7 designated to her in case once the blood is tested for some reason it can't be used you always have more units set aside. Nevertheless by my job sponsoring this blood drive in Nicki's honor other people will benefit from it and I think thats wonderful. It's amazing how people react when they know they are helping out children.
Well I wish all of you a great night....
Raquel Miller Weston/Ft. Lauderdale, FL.... ========================================================================= Date: Thu, 23 Apr 1998 21:14:59 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: JMuggli <jmuggli@CVTV.NET> MIME-Version: 1.0 Content-Type: text/plain; charset="us-ascii" Content-Transfer-Encoding: 7bit
Joanne, Congratulations on your new job!! I am so thrilled for you! Good Luck and try to get rid of that cold! Love, Jennie Muggli ========================================================================= Date: Thu, 23 Apr 1998 13:05:11 -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: Richard Tait <rjrtait@MARS.ARK.COM> Subject: home at last! Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
We are finally home after a cleft palate repair. It was to have been a very easy surgery with only one day of recouping in the hospital. As always though, our little 22 month old decided to be different (as if Aperts wasn't different enough). We spent 7 days in the Children's Hospital Intensive Care Unit waiting from one day to the other to see whether she would live or not. She was intubated, and because she has a very small airway, she became very swollen and it became a life-threat. Anyway, she now has a kidney infection (her last one during surgery almost killed her), and a cold. She isn't very strong, and is having a very difficult job realizing that her body isn't going to do the things that her mind remembers herself doing. She was also on some amazingly strong drugs to keep her sedated and paralyzed. The hospital just stopped them one day, and she has been extremely hypersensitive to everything for 2 days now. One thing we are having the most problem with lately is sleeping. We are lucky if she has gotten 8 hours in the last 4 days. We haven't been able to catch up with all the emails, but I would like to get my hands on a copy of the book by Dr. Upton still. I haven't seen all the new people's emails yet, but do welcome them. The best news for us was that BJ was home. We always look for new updates on him. Bare with us as we get resettled and get our little one healed up again. Thanks, Rene and family rjrtait@mars.ark.com. ========================================================================= Date: Fri, 24 Apr 1998 04:53:58 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: JMuggli <jmuggli@CVTV.NET> Subject: Rene and Family MIME-Version: 1.0 Content-Type: text/plain; charset="us-ascii" Content-Transfer-Encoding: 8bit
Glad to hear you are home. I hope the little one continues to improve. Life has a strange way of throwing us a curve when we least expect it. Take care, you are in our prayers. Jennie Muggli Weimar, Tx ========================================================================= Date: Fri, 24 Apr 1998 09:01:30 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jenngram <Jenngram@AOL.COM> Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Joanne,
CONGRATULATIONS!!!!!! Try to enjoy this most recent success as much as possible and put those "negative" issues away for a while. You deserve a little time to focus on the good things.. So jump right over to Cloud 9..even if it just is for a day or so!!!!
Congratulations
Jenn(Tampa/St. Pete) ========================================================================= Date: Fri, 24 Apr 1998 09:12:50 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jenngram <Jenngram@AOL.COM> Subject: Re: home at last! Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Glad to hear ya'll are finally home, and I am sorry to hear about the stressors of late. If there is anything Joe andI have learned through work, its that no surgery can really be considered "easy", "simple", "in and out"..and so forth. Of course different areas of the body carry different fears..(ie..the cranial surgery vs hands)...But after meeting w/ our anesthiologist for Jordans upcoming hand surgery I had a reallt tough time getting the point across that in my mind surgery was surgery..No they were not opening the skull, but he was still going to get anesthesia, he was still going to be intubated, and he was still going to have a central line..the only difference was the part of the body, and the duration. Needless to say they think I am a bit of a nervous Nellie, but hey as soon as you get comfortable..."BAM" you get thit w/ something..
hmmmm.seems I am getting a bit uptight about our surgery in 2 weeks..not to mention how on edge I am about the recovery process...UGH!!!!!!!!!!!!!!!!!!!!!!!!!!!
Anyway, glad everyone has fared well, setbacks and all, w/ their recent surgeries....does anyone have any this week coming up? I know Nicole has her cranila on May7th..the day before Jordan has his thumb releasal...just trying to keep everyone straight.
Have a good weekend
Jenn(Tampa/St. Pete) ========================================================================= Date: Fri, 24 Apr 1998 14:07:26 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: LUVS2WRTE <LUVS2WRTE@AOL.COM> Subject: Birth Defects Prevention Act Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
If anyone still has that e-mail regarding the Birth Defect's Prevention Act, can you foward me another copy please. I wanted to print it, but the printer had problems and it somehow got deleted. Thanks -
Andrea ========================================================================= Date: Fri, 24 Apr 1998 13:54:52 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Carbide Tech <ruth@CARBIDETECH.COM> Subject: Fw: Kris MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit
---------- > From: Carbide Technologies <carbidetech@dpmicro.net> > To: APERT@LISTSERVE.AOL.COM > Subject: Kris > Date: Friday, April 24, 1998 1:03 PM > > Hi guys! > > Just to update you on Kris' surgery schedule. Or maybe I didn't tell you > this earlier. > So here it goes. We have been trying to have this final reconstructive > surgery done since the summer of 1996. (Believe it or not) She had many > complications from that summer. We almost lost her then. It was horrible. > Not to mention that she and I were involved in a terrible car accident > which left us both in such mental state we had to seek professional > counseling. An 18- wheeler struck us and only by God's grace did we > survive that one. It was coming from the Dr's. office, because insisted on > having this surgery done during the Christmas holidays. "I want to look > better, I'm tired of people staring at me, I wish parents would teach > their kids some manners and "Are you the only parents in the world to teach > their kids manners?" Sometime I wonder that myself. Anyway, the Dr. said > no. He thought it was to soon. Well, we had so many other things going on > that I sort of was glad that he said that. But i realized Kris was > suffering and going thru alot, You can imagine. This past summer we decided > not to do anything. Which she was glad, because as you know, we were going > to start planning her quinceanera (15 yr. grand party) Well, this Monday > we went to see the Dr. again to schedule something for the summer. Some > good news and some bad. First, the good. She won't need a Lafort. It's > all touch-ups but she will need her beautiful, long, curly, deep rich black > hair either shaven or cut. He is going to try to work around it but she > has sooooo much hair! He probably won't want to be messing with it and > will want it shaven. Her upper jaw was going to be also moved forward but > that Dr. had a change made at the last minute (?) and well let us know > something by Monday. I wish they would get together and discuss before > telling us one thing and then changing their minds and saying another. > It's so frustrating. To say the least. We were looking forward to getting > it done and getting it over with, Kris keeps saying "I'm going to look > normal!" I sort of cringe, everytime she says that. > > Sorry its so long, but you guys are stuck with me and your'e gonna have to > hear me out! HA! > > I wish we could all get together sometime. Maybe have a company or > someonoe sponsor our little get together, because some of us probably can't > afford to meet like, somewhere in the middle of everyone. Wouldn't it be > neat to have some corporate giant meet our expenses! Just dreaming. But > sometimes, dreams do come true! > > Talk to you later, > > Love, Ruth (Kristyna Contreras' Mom) ========================================================================= Date: Fri, 24 Apr 1998 14:57:08 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Yonstein <Yonstein@AOL.COM> Subject: Re: home at last! Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Rene:
Hope the recouperation goes more smoothly for you and progress comes quickly. We are scheduled in a month for the palate repair. As Jenn said, no surgery is to be taken too lightly. I was nervous even for Emily's ear tubes, just because of the anesthesia.
Take care and best wishes,
Janine Krebs ========================================================================= Date: Fri, 24 Apr 1998 14:57:48 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Yonstein <Yonstein@AOL.COM> Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Joanne:
Congrats on the job. You deserve some time off!!!!!!!! ENJOY YOURSELF.\
Janine ========================================================================= Date: Fri, 24 Apr 1998 12:04:00 -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: Penny Halverson <phalvers@U.WASHINGTON.EDU> Subject: IRC Chat Tonite! 4/24 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 IRC Big 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. Please join us!!! :-)
Date To Meet On: Friday, April 24th
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 -------------------------------------------------------------------- If you haven't had a chance to download the mIRC for Windows 3.x and 95 or IRCle for MAC users. Please go to download from one of these below.
For those with Windows 3.11 or Windows 95, please download mIRC at: http://www.mirc.co.uk/
For MAC Users: Please download IRCle at: http://www.amug.org/~ircle/ ------------------------------------------------------------------- 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. ------------------------------------------------------------- Hugs, Lauren
mailto:JPayne5634@aol.com ========================================================================= Date: Fri, 24 Apr 1998 15:23:21 -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: Steve & Stacy <sshb@EROLS.COM> Subject: Re: Newbies MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Hi Christina, I have a 16 month daughter named Brooke with Aperts. She has had a trach since she was 8 weeks old. She has had 3 cranial expansions, the last one Feb. 4. The surgeon used expanders this time that he will remove at a latter date. She now has a brow that extends passed her eyes. No more eye bulging or popping. Brooke also has a G-tube. We are working on oral motor with a speech therapist and ot. Hopefully we will be able to get her to start taking food by mouth soon. Brooke has had one hand surgery to release her fingers. She needs one more surgery to have five fingers on each hand. As much as I hate her trach I also love it. Breathing is a good thing and at least it is not permanent. So remember you are not alone. I know what you are going through, along with just about everyone else on the list serve. take care, Stacy ========================================================================= Date: Fri, 24 Apr 1998 18:37:24 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Copperhd87 <Copperhd87@AOL.COM> Subject: Keeping up with surgeries Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Dear all, Someone recently mentioned trying to keep up with all the surgeries. I thought I would let you know my method. I'm an accountant, so my mind instantly forms a worksheet to handle just about any task. About the second day I was on the listserver, I developed a worksheet with headings for columns listing all the pertinent information I should remember about each family on the listserver. I guess it's my own personal little data base--just on paper. There's columns for everyones' screen names, real names, doctors, locations and their surgeries. I hope no one minds that I do this, it's been very helpful to me to keep everyone straight. I do have a pet peeve about the pizza parlor and grocery stores keeping a record of all my purchases in their data base. So, when I want to remind myself about upcoming surgeries, all I have to do is look at my list. I hope someone else mind find the suggestion helpful.
Sincerely, Resa ========================================================================= Date: Fri, 24 Apr 1998 18:46:38 -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: Laurie Ann Bailey <jkb@ELPASO.NET> MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
J. G. Lindamood wrote: > > Well, my anticipation is over! I found out TODAY that I got the job!!! > Hooray! Hooray!
Good for you!!!
Laurie Bailey jkb@elpaso.net ========================================================================= Date: Fri, 24 Apr 1998 17:43:29 -0700 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Robyn Johnston <robyn@ORDATA.COM> Subject: pictures & misc Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
>I think I am also going to do the map and picture thing and keep it by the >computer. This is really going to help everyone when they try to visualize >these kids and adults when being discussed on the listserv.
Count us in too! This is such a wonderful idea! Please add our name to the list of people who are sharing pictures. We would love to put a name with all of your faces when we are at the computer. Please forgive me if I may be slow. I need to get some more pictures reprinted!
Robyn Johnston PO Box 25633 Eugene, OR 97402 ========================================================================= Date: Fri, 24 Apr 1998 17:43:34 -0700 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Robyn Johnston <robyn@ORDATA.COM> Subject: Re: Joanne Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
Joanne - congrat's!!!! Way to go! This just proves that good things come to those who wait! :-) Let us know how everything goes!
Hugs, Robyn Johnston ========================================================================= Date: Fri, 24 Apr 1998 17:43:36 -0700 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Robyn Johnston <robyn@ORDATA.COM> Subject: BJ update Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
Marjorie thank you for the update! This is wonderful news. BJ (and your family) never cease to amaze me! Way to go!!! I will pray for a smooth transition to home for you all.
>> look at hiring a case manager< >Really, your insurance company should provide this service in regard to the >hospitals, bills etc.
Marjorie, we have got 2 case managers as well. We just requested them from both of our insurance companies. You might have to be assertive, but they do provide this service for anyone with 'ongoing' needs. They have been a wonderful middle person whom have been very helpful. Actually, I would suggest to all families to check this out if you haven't already.
Welcome to all the new families. As you will see, this is a wonderful support group!
hugs, Robyn Johnston ========================================================================= Date: Fri, 24 Apr 1998 20:06:16 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: ize <ize@TACOMA.CEATLABS.OKSTATE.EDU> Subject: Re: An update MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Marjorie and Family,
What a wonderful news! We hope things go smooths for you all and BJ is continuous progressing...
God bless you all. The Ize's. ========================================================================= Date: Fri, 24 Apr 1998 20:06:50 -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: ize <ize@TACOMA.CEATLABS.OKSTATE.EDU> Subject: -- MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
CONGRATULATIONS!!!!!!
We are soooooo happy for you Joanne!
The Ize's. ========================================================================= Date: Fri, 24 Apr 1998 20:08:18 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: ize <ize@TACOMA.CEATLABS.OKSTATE.EDU> Subject: Re: Newbies MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Welcome Christina and Zoey!
We are the Ize family. We have(2 1/2 years old) twin boys Felipe and Rafael. Felipe was born with Apert's. Felipe doesn't have breathing problem, sorry I can't help you about the trach, but I think that you are going to find some help by the other parents or even adults with Apert's.
Best wishes to you, The Ize's from Oklahoma. ========================================================================= Date: Fri, 24 Apr 1998 18:16:18 -0700 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Scott Pengelly <scottp@EUGENE.COM> Subject: Re: Keeping up with surgeries In-Reply-To: <7bc04027.35411425@aol.com> Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
Good evening, Resa: I am intrigued by your helpful, organizing idea of using a spread sheet. I would like to see more of what you are doing--or learn more about following your example.
Thanks so much. All the best, Scott Scott Pengelly, Ph.D. Eugene, Oregon
At 06:37 PM 4/24/98 EDT, Copperhd87 wrote: >Dear all, > Someone recently mentioned trying to keep up with all the surgeries. I >thought I would let you know my method. > I'm an accountant, so my mind instantly forms a worksheet to handle just >about any task. > About the second day I was on the listserver, I developed a worksheet >with headings for columns listing all the pertinent information I should >remember about each family on the listserver. I guess it's my own personal >little data base--just on paper. There's columns for everyones' screen >names, real names, doctors, locations and their surgeries. > I hope no one minds that I do this, it's been very helpful to me to keep >everyone straight. I do have a pet peeve about the pizza parlor and grocery >stores keeping a record of all my purchases in their data base. > So, when I want to remind myself about upcoming surgeries, all I have to >do is look at my list. I hope someone else mind find the suggestion helpful. > >Sincerely, >Resa > > ========================================================================= Date: Fri, 24 Apr 1998 22:37:26 -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: Jack and Raquel <jara1@BELLSOUTH.NET> Subject: Home, Surgeries, Pictures MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Rene, Sorry to hear about all you guys went through with your little one, but thank God that she is back home and on her way to feeling better. Stay strong and focused thats all I can tell you. That is all that I have been telling myself, since we are less than two weeks away from our daughter Nicole's first surgery, I am so nervous I cannot even begin to tell you. But I guess I don't have to you already know.
We will try to keep everyone updated once Nicki has her surgery but we probably won't be back to the computer until we are back home with Nicki. You know how that is living in the hospital. Although we will have several family members there with us my sister, my mother in law etc., so we might take turns after the first two or three nights so Jack and I can go home at night and try to sleep, I don't know, we'll play it by ear.
Jenn, We received Jordans pictures, now I think he and Nicole will make a beautiful couple, I mean he is the older man and all. I've got first dibs on Jordan!!! You tell Jordan that Nicole is going to have a little cosmetic surgery done and will be under the weather for a while but hopefully they will be able to meet in July......
To everyone, Jack promised that he would take more pictures of Nicki this weekend, so hopefully they will all go out next week to the addresses given so far. We will try and send them out next week if not we will have to send them out after we get back from the surgery.
Talk to you all later...
Raquel in beautiful sunny crisp south Florida..... ========================================================================= Date: Fri, 24 Apr 1998 22:35:37 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Copperhd87 <Copperhd87@AOL.COM> Subject: IRC Chat Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Dear all, Well, I tried to join the chat tonight. Mitchell cooperated, but the computer didn't. Something about an invalid directory path. Since the resident computer guru (my husband, Mark) is out tonight, I'll have to try another time. Gee, it's only been since I got pregnant with Mitchell (now 15 months old) since I used the IRC. I wonder what could have happened. Ha, Ha!
Later, Resa ========================================================================= Date: Fri, 24 Apr 1998 22:43:48 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Copperhd87 <Copperhd87@AOL.COM> Subject: Vitamin therapy Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Vitamin therapy sounds like a wonderful idea on paper. But how do we put it into practice with our babies? I'm rather nervous about trying to give unprescribed vitamins to Mitchell. Probably if you ask a regular pediatrician she'll give you some kind of standard double talk about it being unproven, untested, etc. I tried Mitchell on some fish today and he wouldn't even touch it. Literally--he just looked at it. He subsequently stuffed himself with spagetti. So how is the best way to actually get the vitamins into them?
Thanks, Resa ========================================================================= Date: Fri, 24 Apr 1998 22:54:48 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Frank & Annette Contrino <contrino@BUFFNET.NET> Subject: Re: Pictures Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
Please include us as well.
The Contrinos 7310 Norman Road North Tonawanda, NY 14120 ========================================================================= Date: Fri, 24 Apr 1998 22:59:43 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Copperhd87 <Copperhd87@AOL.COM> Subject: Re: Spreadsheet Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Scott, The spreadsheet I'm using is actually very simple. It just has the headings across the top with the information underneath. My headings are Screen name Parents' names Childrens' names (I include all the children in the family with their ages or birthdates and any information I think would be especially important to remember) Doctors' names and location if different from the family's location Hometown What--This is where I put all the information about past and upcoming surgeries or other relevant medical information that I want to be sure to remember
You could get fancy and put all of this on a Lotus or Excel program but I like to keep mine handy so I can refer to and update it easily. Mine is also on hot pink paper so it's easy to find and I won't accidentally throw it away. We have four people that keep this computer hopping, so things around this desk tend to get a little mixed up sometimes. Good luck!
Resa ========================================================================= Date: Fri, 24 Apr 1998 20:24:46 -0700 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Robyn Johnston <robyn@ORDATA.COM> Subject: sweating and body temperature Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
I have a question about sweating and body temperature if anyone can answer...
I know a lot of people who have Crouzons/Aperts have 'inneficient heating/cooling' systems - in other words, 'sweat alot'. So what I want to know is do you actually feel hot while you are sweating? Or is your body temperature comfortable when you sweat. I hope this isn't too personal. If it is, you could mail me in private.
The reason I am asking is because I barely cover Brenna at night because she sweats sooooo much! She loves to snuggle while she is falling asleep so I let her have 2 blankets, but after she goes to sleep I go into her room and wipe the sweat off her head and remove the warmest blanket just leaving her with one cotton blanket. If I give her any more she sweats like crazy. I just want to know if she is probably warm enough or if I should keep the covers on. Just a paranoid 'mommy' thing I guess. :-) but I feel kind of quilty for not covering her with much.
I have been wondering lately because Caden is soooo different than Brenna. I have had to go buy extra blankets and warmer PJ's because he is always cold and likes to be snuggley warm. Brenna has never needed many blankets or warm clothes. Any thoughts on this? I know her difficulty in breathing at night probably affects her body temp too.
BTW Caden is doing real well. He will be one month old tomorrow! I can't believe time has gone by sooo fast. He is growing like a weed. Brenna is doing real well with her little brother. She loves to hold him and is even sharing some of her toys with him. We are so lucky to have soch good kiddo's. Hope everyone is doing well.
Hugs, Robyn Johnston Eugene, OR ========================================================================= Date: Fri, 24 Apr 1998 23:28:09 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Thornq <Thornq@AOL.COM> Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Joanne,
Congratulations on your new job. Good things come to those who wait. Maybe you could get that specialty birdseed for your babies!! I hope the job is everything you anticipate it to be. Don't forget, just like bad things come in threes, so does good things. Just think....what else could be waiting for you in the near future!!!!! Good luck!
Lynn Thornquist ========================================================================= Date: Sat, 25 Apr 1998 00:07:42 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Thornq <Thornq@AOL.COM> Subject: Re: sweating and body temperature Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Robyn,
I believe that your body sweats in order to keep your body temperature normal. I could be wrong about this, but I think it makes sense. So I guess that you must sweat because you are hot, maybe not on the outside, but on the inside. Does that make sense? Andrew used to sweat alot when he was a baby, but he hasn't much since he turned one. I also don't cover him with much. Also most people are uncomfortable when they sweat, so maybe taking the covers is a good thing because that way she doesn't get uncomfortable and not sleep well. Just a thought! Hope it helped some. Good luck in finding the right answer.
Lynn Thornquist ========================================================================= Date: Fri, 24 Apr 1998 23:07:13 +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: Keeping up with everything!
Hello Family!
Resa, I thought about your idea too! Only, I will need it to keep all of the names straight let alone the surgeries! This family is huge!
Thanks to all of you for your best wishes and support. I shared the news with my father and step mom tonight. She was thrilled. Dad, well, he doesn't show excitement much. Never did. He did buy me dinner. :-)
I am still coughing and sneezing it's getting on my nerves. I managed to get out today and planted my marigold and money plant seeds. I hope I'm not to late. The money plants are in memory of my grandmother. She always had dried arrangements with money plants. I hope you all know what I'm talking about. The niquil is sinking in and I am rambling. Anyway, the sun shine did me a world of good!
Hope all is well, and until I can create my spreadsheet, I hope you will accept my overall well wishes to those who are having surgeries!
BTW I saw Jordan first! :-) Joanne!
_____________________________________________________________________ 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: Sat, 25 Apr 1998 08:07:18 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jenngram <Jenngram@AOL.COM> Subject: Re: Keeping up with surgeries Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Resa,
Good idea re: spreadsheets. I hae done more than I would like to admit w/ patients of mine, so now perhaps I can try it w/ this. thanks for sharing it w/ us..I should have thought of it sooner!!!!!
Jenn(TAmpa/St. Pete) ========================================================================= Date: Sat, 25 Apr 1998 08:26:18 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jenngram <Jenngram@AOL.COM> Subject: Re: sweating and body temperature Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
well, I know Jordan CAN sweat at times...mostly during his nap when his room is hotter b/c of the sun on that side of the house...another one is that he sweats if he has socks on..but then so do I. Even when he sweats (w/o covers) he feels cool to touch. Now, I don't cover his except at night, but since Jordan was an infant he hated covers anyway. I can go in his room at night and hes kicked off his light blanket and his body feels like an icesicle (sp). As soon as I put another cover on him, his legs go up like a rocket (and mind you hes in a massive deep sleep at this point) they twist side to side, and the covers come off. He sleeps great, and doesn't sweat...and has no socks on either. Now, I know my brother sleeps in an iceburg..w/ all the humidity in New Orleans combined w/ his AC at subzero..there has literally been frozen condensation on the windows at times.....if he doesn't sleep like this..he sweats like a maniac..and hes 6 feet 5 and barely weighs 200 lbs. Same w/ my dad onlt hes slightly (and thats putting it mildly) shorter and heavier. So I'm wondering if we did some statistical work -ups on the group would we find its just a personal thing, or is it truely an Apert/Crouzan thing...???? I know the literature says its b/c of the syndrome, but it seems there are as many who don't sweat as who do...hmmmm..long-winded as usual, just curious though...
Jenn(Tampa/St. Pete) ========================================================================= Date: Sat, 25 Apr 1998 17:50:33 -0400 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jack and Raquel <jara1@BELLSOUTH.NET> Subject: sweating and body temp. MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
We've been told that kids with Aperts have active sweat glands, so I think it is a combination of Aperts/heredity because I also used to sweat a lot. I believe that also as teenagers they might get a case of acne. Maybe somebody from our large family can put some light to this, have you gone through having the acne or do you know if this is true? Just another question for the basket...
talk to you all soon...
Raquel Weston/Ft. Lauderdale.. jara1@bellsouth.net ========================================================================= Date: Sat, 25 Apr 1998 18:19:43 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Camous <Camous@AOL.COM> Subject: trachs Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
In a message dated 4/22/1998 2:58:08 PM Pacific Daylight Time, ChMathis@AOL.COM writes:
> One question I do have now is if > anyone else's child had breathing problems that needed a tracheostomy when > their child was young.
HI Christina and Zoey, Welcome to the Apert-kids-with-trachs subgroup!! There are a few of us, as well as a few "graduates". My son, Evan was trached at about 4 weeks of age and is now 21 months old and doing well. He did Ok at birth despite choanal stenosis (nasal passages very small) but by the time his two older sisters brough home his first "cold" he just couldn't keep up. After two nights up with him all night trying to hold his tongue out of the way so he could mouth- breathe, and his throwing up all over myself, his aunt and the world-famous ENT docs...I was talked into a trach which was to last 12 months. Yeah, right! He had a few other adventures in his first 1 1/2 years...but all is well now. Last December he had his cleft palate repaired and they opened his nasal passages with stents at that time. He will need his trach until he has his mid-face advancement at age 3 or 4 (we are also less excited about having this after Ceci's tragedy). Evan is currently using a Passy Muir speaking valve to vocalize and is in speech therapy weekly to help turn these sounds into words. In the meantime, use simple signs and everyone has commented on how expressive Evan is- he gets his point across one way or the other.
Has Zoey started Speech Therapy? Is she using a speaking valve or occluding her trach to vocalize? Has she tried to remove her trach?- We had that little experience the other day!! Ev now routinely takes off his valve or trach guard and we find them in the oddest places. I guess it's good that he has such good hand function! ;)
If I can be of any help with trach issues, let me know. I think our comfort level is to a point where the major problem is the inconvenience of having to carry so much stuff every time you go out the door...ambu bag, spare trach, suction, tubing,etc and not being able to go overnight without the compressor, monitor, etc. On the up-side, since he requires skilled care, the insurance company provides nursing so day care isn't such an issue. (ahhhh, the silver lining!)
Marianne Camous (Evan Milburn's mom) San Carlos, Ca ========================================================================= Date: Sat, 25 Apr 1998 18:34:20 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Camous <Camous@AOL.COM> Subject: Re: Pictures Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
In a message dated 4/23/1998 5:14:39 PM Pacific Daylight Time, Thornq@AOL.COM writes:
> His middle finger on > his left hand is getting much wider and has a little more bone in some areas > than most. That will be done when he is three as well, but it is concerning > me. Lynn, Evan's index fingers are also radially deviated (ie bent toward the thumb) but they are not going to be fixed for some time. part of the reason is thathis thumbs are also bent in the same direction so this actually accomodates his pincer grasp better than if his index fingers were straight. We are to start "working on: the thumbs in the late fall (or more likely after the first of the year- I sure won't sign up for even an overnight surgery the week before Christmas ever again!!!) . These will be staged procedures due to the need to stretch the tendons so may actually be even more involved than the actual finger separations were. Also keep in mind that surgeries like this done too early carry the risk of having to be done again. I firmly believe that the fewer anesthetics the better and so am willing to wait if necessary. Since Evan can get his speaking valve off his trach, the night light out of the socket, and his spoon to his mouth I think he has just fine function for now!! It scares me to think of what he would get into if it were any better. He's about 10 times more mischevious than both of his sisters combined.
Marianne in beautifully Sunny California....I can't believe it , a weekend off and the sun is out! ========================================================================= Date: Fri, 25 Apr 1997 17:05:26 -0700 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Longshot & Darwin <Longshot.Darwin@MCIONE.COM> Subject: Re: sweating and body temp. In-Reply-To: <35425AA9.169F@bellsouth.net> MIME-version: 1.0 Content-type: text/plain; X-MAPIextension=.TXT; charset=US-ASCII Content-transfer-encoding: 7BIT
Raquel,
I just think it might the average teenage thing to have acne. I had it really bad when I was one. My brother, who isn't Apert, had it also. He grew out of his and so did I. I still have alittle but not as bad. It helps not to eat too much chocolate or stuff with too much acid, like Coke or tomatoes, within a short period. I have found this helps. I still eat and drink stuff like, but not too much within a couple of days. I also wash my face once a day with medicated soaps and then put Oxy on it. Hope this helps.
Glad BJ is home.
Joanne, congratulations on the job.
Everyone who has operations coming good luck.
I will send out some pictures today but forgive me I need to order some more so the rest will be in a couple of weeks.
Rachel Longshot.Darwin@mcione.com ========================================================================= Date: Sat, 25 Apr 1998 21:03:48 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Patbrat718 <Patbrat718@AOL.COM> Subject: Re: sweating and body temp. Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
As for Jasmyn, she sweats....excessively. I have been told that it is because of the Aperts. When she was a baby, during feeding, I spent more time wiping her little head from sweat than I did spilled milk. She is now almost 10 and its better, but still more than the rest of us.
Acne, Jasmyn started with what I call 'baby spots' about a year ago. I call them baby spots because they are just like the 'pimples' that new born babies have, no redness or inflamation. She gets them most prominently across the mask area of the face. She also gets them on her forearms. It is not what I would readily recoginize as acne, but at any given time, she would normally have between 5 and 10 of these 'spots' on her face. Whether it be her skin or her hair, she produces an enormous amount of body oil. She has to exercise her hygeine a little more rigidly than most, but it doesn't really seem to be a problem at this point....I think puberty will bring on most of the changes...we shall see.
Patti ========================================================================= Date: Sat, 25 Apr 1998 19:06:44 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Camous <Camous@AOL.COM> Subject: the photo event of the decade! Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Hi all! I just finished with catching up on 500+ e-mails....Working too many night shifts and can't deal with it at 2AM! Please add us to the photo exchange- I'll get copies of Evan and his sisters all dressed up for Easter!! Maybe we should make this a quarterly update as our kids change so rapidly from growth and surgery! Or with some donations/funding to Christine Clark to cover color Xerox, we could send photos to her on a regular schedule for inclusion in her newsletter. Our "snail-mail is as follows:
Marianne Camous & David Milburn Sarah Kate and Evan Milburn 412 Sycamore Street San Carlos, CA 94070
I've gotten a bit confused over the dated and planned get-togethers for this summer. Are there two? Orlando and where? We are trying to find a way more realistic than winning the lottery to get a family of 5 back to an extended family get together for a wedding reception and memorial service in either Ohio or Albany NY in July. Don't have dates yet..but would like to see some folks. If we go back, we will undoubtedly try to see friends in Pittsburgh and Rochester, NY. The logistics are staggering! Someone please put together a "list" of planned meetings!
Thanks- Off to get ready for a trip down the coast as my husband is running the Big Sur Marathon tomorrow!
Marianne ========================================================================= Date: Sat, 25 Apr 1998 21:16:00 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Patbrat718 <Patbrat718@AOL.COM> Subject: Needing a headstart.... Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Hi all, Patti here, from CA. Since I'm new here I thought someone might be willing to show mercy on me. I love the idea about the spreadsheet, and I don't mind doing one, but there are so many names and places and events that I am having trouble connecting. Is it possible that someone has created a file with this data that they can forward? I think my only other option would be to scan the logs and try and place people......uhg.
Thanks, Patti ========================================================================= Date: Sat, 25 Apr 1998 22:24:48 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: ChMathis <ChMathis@AOL.COM> Subject: Re: trachs Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Thanks for the message. Zoey's nasal passages are so pinched that she is not able to use her passy muir valve at this stage. When we put it on her, she stops breathing. She figured out how to talk around her trach, and was talking (baby talk) for about two weeks (this was around when she was a year old) and then no more. She's 15 months now and won't make a sound. It bother's me sometimes, however, when I'm already frustrated and she's crying, I'm less upset that I can't hear her. I'm also very comfortable with her trach, and yes I enjoy her nursing also, and can totally relate to the having to bring her whole nursery with us. I know that it will get better and better. I'm told her trach will come out when she's bigger because 1) her bronchal (sp) malaysia (sp) (flimsy bronchi) and 2) she will have had her midface advancement and that will open up her nasal passages. I'm just thrilled that aside from when she has a cold, she's off her oxygen, and it alot easier to throw her in the car and go to the park. She's on CPAP at night (because of her malaysia). I have a question for anyone. What's a LaFort? I keep hearing the term, and an confused. Is Zoey going to have one, has she already had one? I'm also long-winded and can type really fast, so that's all. Christina (Zoey and Tia) ========================================================================= Date: Sat, 25 Apr 1998 22:33:15 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: ChMathis <ChMathis@AOL.COM> Subject: Re: sweating and body temp. Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Zoey sweats alot, however, it is tapering off as she gets older. Interestingly enough, Zoey's sister (who is not Aperts) had alot of baby "pimples" as a youngun, and Zoey's face was very clear. What I do/did with Zoey, if cover her after she drifts off to sleep with a light blanket, and if she kicks it off, I figure she doesn't need it. I still do check her during the night, but she is almost always, fine. I also fear for Zoey when she's older, because I had horrible acne for years since the age of about 16, so I hope Zoey's not hit worse because of me.
I didn't answer the question about Zoey ever pulling out her trach. No, she's tried, but she's never succeeded. It's come out a few times though, and Zoey scared herself, because her cry is very strong!!
Christina, (Zoey and Tia) ========================================================================= Date: Sun, 26 Apr 1998 01:05:07 +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: "Joana H. Magno, M.D." <magnomd@ALOHA.NET> Subject: Re: the photo event of the decade! MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
To Don Sears,
Could we somehow make a page where there was a listing of families who have been active on the list, identified by city/state/country? That way, new families could more easily identify those in their close proximity.
Please add us to the list, too:
Margaret Iucker c/o Joana Magno 811 Moaniala St. Honolulu, HI 96821
P.S. Has anyone made a list of people for the photo exchange and put it on a label making program ? ========================================================================= Date: Sun, 26 Apr 1998 09:19:25 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Thornq <Thornq@AOL.COM> Subject: Re: the photo event of the decade! Mime-Version: 1.