========================================================================= Date: Fri, 8 May 1998 01:46:15 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: JPayne5634 <JPayne5634@AOL.COM> Subject: Fwd: IRC Chat Nite Tonite 5/8 Mime-Version: 1.0 Content-type: multipart/mixed; boundary="part0_894606376_boundary"
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From: JPayne5634 <JPayne5634@aol.com> Return-path: <JPayne5634@aol.com> To: crouzon@u.washington.edu Subject: IRC Chat Nite Tonite 5/8 Date: Fri, 8 May 1998 01:44:36 EDT Organization: AOL (http://www.aol.com) Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Hi everyone!!
Tonite is IRC Big Chat Nite Tonite!! So let's get acquainted with each other :) Keep in mind that some people will show up a little later than time started. Please join us!!
Date to Meet On: May 8, 1998
IRC Server: ChatNet ( Any locations)
Port Setting: 6667
Channel: #apertcrouzon
Time: 11:00pm AT/10:00 pm 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 dont have to be a member to join AOL IM and it is free!! AOL IM is one to one online chat My AOL IM: Lauren1273
Hugs, Lauren
--part0_894606376_boundary-- ========================================================================= Date: Fri, 8 May 1998 06:39:19 -00700 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: The Ize Family <ize@TACOMA.CEATLABS.OKSTATE.EDU> Subject: mother's responsibilities - from The Ize Family
Guess what!! The Ize Family has just sent you an animated greeting card You can pick up your personal greeting by connecting to the following WWW Address
<A HREF="http://www.bluemountain.com/cards/box3384e/yo322nnwxdzyaji.htm">http://www.bluemountain.com/cards/box3384e/yo322nnwxdzyaji.htm</A>
(Your greeting card will be available for the next 30 days) This service is FREE! :) HAVE a good day and have fun!
____________________________________________________________ Accessing your card indicates your agreement with our Website Rules posted at the bottom of the following Web location: (You're welcome to send a free card to someone at this location) http://www.bluemountain.com ========================================================================= Date: Fri, 8 May 1998 09:52:59 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Yonstein <Yonstein@AOL.COM> Subject: HAPPY MOTHER'S DAY Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
HELLO ALL:
I just wanted to wish all of you a Happy Mother's Day. This day is very special to all of us. I know how hard it is sometimes to give so much, but it is so rewarding also. Enjoy your day.
Thank you Ize family for the greeting.
Janine ========================================================================= Date: Fri, 8 May 1998 08:12:13 -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: mother's day MIME-version: 1.0 Content-type: text/plain; charset="us-ascii"
The Ize family,
Happy Mother's Day to you and thank you for my card! I asked my husband and he said that he minded, but I'll work on him!ha...ha...
Denise Graham ========================================================================= Date: Fri, 8 May 1998 10:58:02 -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: Tim Graves <timg@BELLSOUTH.NET> Organization: home Subject: love/time MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Thought you might enjoy this:
Once upon a time, there was an island where all the feelings lived: Happiness, Sadness, Knowledge, and all of the others, including Love. However, one day it was announced to the couples that the island would sink, so all prepared their boats and left. Love was the only one who stayed. Love wanted to stay until it started sinking. When Love was almost sinking, he decided to ask for help. Richness was passing by Love in a beautiful boat. Love said, "Richness, can you take me with you?" Richness answered, "No, I can't. There are a lot of gold and silver in my boat. There is no place here for you." Love decided to ask Vanity who was also passing by, "Vanity, please help me!" "I can't help you Love. You are all wet and can probably damage my boat," Vanity answered. Sadness was close by so Love asked for help, "Sadness, let me go with you." "Oh...Love, I am so sad that I prefer to go alone!" Happiness passed by Love too, but she was so happy that she did not listen when Love called her! Suddenly, there was a voice, "Come Love, I will take you." It was an elderly. Love became very happy that he even forgot to ask the name of the elderly. When they arrived to the other side , Love asked Knowledge who was the elderly. "It was Time." "Time? But why did Time help me?" "Because only Time is capable of understanding such a great Love."
P.S: Time is capable of solving anything. Things today may not have a solution but tomorrow you will find one! ========================================================================= Date: Fri, 8 May 1998 11:40:12 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Carbide Tech <ruth@CARBIDETECH.COM> Subject: Miss Vivi in Argentina! MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit
Hello everyone!
Ruth Contreras here. (as if you couldn't figure that one out!) I have got some news to share with you guys! And to be honest with you I AM SO THRILLED! As I've mentioned to you all, I have been talking with Claudia about her little sister ViVi. And she has told me some of the things that have been going on with ViVi. I will repeat with you all, since I'm sure Claudia will not mind. Vivi is 14 years old, lives in Argentina, has had some surgeries (not many at all, compared to our little ones!) But she is having a major problem in actually going through the surgeries, evidently, everytime she goes in for surgery she has many problems with the anesthesia, so the Drs. and the parents have cancelled any future surgeries because of her problems with anesthesia and because she has developed many breathing problems during the surgery. And lets not forget to mention that theyare not quite equipped to handle this "complicated" (putting it mildly) procedures. I spoke to a friend of mine who happens to be a surgeon and happens to be an Argentinian (?). Now, I realize that this is going to be very difficult to achieve because of the "red tape" but here it goes, He said (which I already knew this) the first thing we have to do is get a letter from her Dr. in Argentina stating that they cannot handle ViVi's situation and why and then to talk to the Argentinian Consulate to get her and her parents a visa to get her here for treatment/surgeries, etc. He also said (and the most important!) that he would talk to the hospital where he does many surgeries, to get her to do the surgeries FREE OF CHARGE! Of Course, I realize that if I talk to for example, Marvin Zindler, (a big celebrity here in the Houston area, that helps people with problems) he could help us with Texas Children, Hermann Hospital or my best bet would be The Shriners Hospital. Claudia is very excited she says that she told her little sister that one day she would bring her to the USA so that she could get her surgeries done. Needless to say, I'm so excited about this, please help us pray so that everything will turn out for the best and if anyone has any ideas or suggestions, please do not hesitate to tell me. My husband and I are ready and willing to help in whatever we can. We know what kind of pain ViVi's parents are going through and I don't wish them on anyone. And it must be terribly painful not to be able to get the help that your little precious one needs.
We are still taking care of Kris. Her sinus infection seems to be doing better. We have an appointment with her surgeon to take a culture of her nose right before the surgery, I pray everything will be OK for her surgery. She has been waiting 2 years to have this surgery done. Adios amigos! Vaya con Dios!
Ruth ========================================================================= Date: Fri, 8 May 1998 13:23:49 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: LUVS2WRTE <LUVS2WRTE@AOL.COM> Subject: Re: love/time Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
This is VERY true. Sometimes we just need a lot of patience for things.
-Andrea ========================================================================= Date: Fri, 8 May 1998 13:04:56 -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: Miss Vivi in Argentina! In-Reply-To: <19980508163349613.AAA139@cti1> Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
Good afternoon, Ruth:
Great and good going for you. Thank you so much for relaying the good news and for all you are doing. Good luck. All the best, Scott Eugene, Oregon
At 11:40 AM 5/8/98 -0500, Carbide Tech wrote: >Hello everyone! > >Ruth Contreras here. (as if you couldn't figure that one out!) I have got >some news to share with you guys! And to be honest with you I AM SO >THRILLED! As I've mentioned to you all, I have been talking with Claudia >about her little sister ViVi. And she has told me some of the things that >have been going on with ViVi. I will repeat with you all, since I'm sure >Claudia will not mind. Vivi is 14 years old, lives in Argentina, has had >some surgeries (not many at all, compared to our little ones!) But she is >having a major problem in actually going through the surgeries, evidently, >everytime she goes in for surgery she has many problems with the >anesthesia, so the Drs. and the parents have cancelled any future surgeries >because of her problems with anesthesia and because she has developed many >breathing problems during the surgery. And lets not forget to mention that >theyare not quite equipped to handle this "complicated" (putting it mildly) >procedures. I spoke to a friend of mine who happens to be a surgeon and >happens to be an Argentinian (?). Now, I realize that this is going to be >very difficult to achieve because of the "red tape" but here it goes, He >said (which I already knew this) the first thing we have to do is get a >letter from her Dr. in Argentina stating that they cannot handle ViVi's >situation and why and then to talk to the Argentinian Consulate to get her >and her parents a visa to get her here for treatment/surgeries, etc. He >also said (and the most important!) that he would talk to the hospital >where he does many surgeries, to get her to do the surgeries FREE OF >CHARGE! Of Course, I realize that if I talk to for example, Marvin >Zindler, (a big celebrity here in the Houston area, that helps people with >problems) he could help us with Texas Children, Hermann Hospital or my best >bet would be The Shriners Hospital. Claudia is very excited she says that >she told her little sister that one day she would bring her to the USA so >that she could get her surgeries done. Needless to say, I'm so excited >about this, please help us pray so that everything will turn out for the >best and if anyone has any ideas or suggestions, please do not hesitate to >tell me. My husband and I are ready and willing to help in whatever we >can. We know what kind of pain ViVi's parents are going through and I >don't wish them on anyone. And it must be terribly painful not to be able >to get the help that your little precious one needs. > >We are still taking care of Kris. Her sinus infection seems to be doing >better. We have an appointment with her surgeon to take a culture of her >nose right before the surgery, I pray everything will be OK for her >surgery. She has been waiting 2 years to have this surgery done. Adios >amigos! Vaya con Dios! > >Ruth > > ========================================================================= Date: Fri, 8 May 1998 18:08:41 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: GSieb91515 <GSieb91515@AOL.COM> Subject: Re: Special Olympics and first steps Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Marianne-
Congrats on the first steps. I know what a bummer it is to not be there when our kids have their great moments. Jonathan's nanny told me that he said Gracias today and he hasn't even said mama yet.
Take Care,
Brenda ========================================================================= Date: Fri, 8 May 1998 21:49:36 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: GSieb91515 <GSieb91515@AOL.COM> Subject: Re: mother's responsibilities - from The Ize Family Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Ize's
Thanks for the greeting card. It was very nice of you to send and clever too.
Brenda ========================================================================= Date: Fri, 8 May 1998 22:01:53 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: GSieb91515 <GSieb91515@AOL.COM> Subject: Re: Miss Vivi in Argentina! Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Ruth,
What a great thing to do. Please let me know if I can help in any way (with Marvin Z. or TCH or anything at all). We would love to be able to contribute in some way to help this family get the wonderful care that we are privy too here in the US.
Hope Kris gets over this cold soon. Jonathan has started with a runny nose now too. His surgery is the day after Kris'. Please keep us posted on Vivi and what we can do to help.
Brenda ========================================================================= Date: Fri, 8 May 1998 22:16:00 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: GSieb91515 <GSieb91515@AOL.COM> Subject: Re: Picture addresses Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Christine,
What is a medical access card? Is it the same as Medicaid? What is the loophole I'm hearing about and do you know if Texas has this available?
Brenda Houston ========================================================================= Date: Fri, 8 May 1998 22:28:25 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: GSieb91515 <GSieb91515@AOL.COM> Subject: pictures Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Joana,
We received Margaret and Sarah's photos today. They are too cute. Where did Mar Mar have her hands done? They look fantastic. Did she have mild syndactaly? How old is Sarah? I don't remember back when we first heard about her. She looks great too for not having any cranial surgeries at all. Margaret sounds like she keeps very busy. The Easter Seals is a great organization and it is wonderful what you do for them. We will send a photo to the Yenneys when we send ours out.
Thanks for the letter and photo.
Brenda houston ========================================================================= Date: Fri, 8 May 1998 22:39:14 +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,
Brenda Siebert, I got the newsletter today!! Thank you!! what do I owe you? You will get something for making the copies at least!
Graves family, thanks for the story on love! It just so happened I have told myself a lot lately, it takes time Joanne, give yourself time and the pain will subside. Things will calm down. BTW, the "professional only" friend called me today to see how everything went. He also wants to be the photographer taking the picture I will send to you all! Well, isn't that a shock!
Today, my "first day" at the new job went well. I was there for 2 and 1/2 hours filling out the paper work, getting a TB test and introducing Apert's to the doctor who gave the physicals. The latter was the best part! I was ready to pull out the scissors and keyboard to prove to him I AM CAPABLE OF DOING THESE THINGS! It's a real trip to have a medical professional doubting my words and yet to see the look of shock upon his face when I make a wise crack about how I do things. "Just like you do". We had an interesting moment during the paperwork when it came time for finger prints. It could have been an awkard moment but the HR director and I made it a laughing time instead. They only got my thumbs and I sent a note from the aforementioned medical professional stating that my fingers are webbed and not fingerprint-able. Oh well.
There is a love seat sitting on it's end right behind me. My brother and I heaved it upstairs, in my attempt to get a new look for a new job, and dumped it. It's after nine p.m. and I'm still determined to have this room looking decent by tomorrow. Haha! I think my preoccupation with my home has held the nerves about the new job at bay. Either that or I have "been here, done that" enough times, I'm immune to the nerves.
Can you tell I have a coke recently? buzzzzzz
I better get this love seat sitting right at least! Joanne Where did all of my free time go? ========================================================================= Date: Fri, 8 May 1998 22:49:23 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Thornq <Thornq@AOL.COM> Subject: Re: mother's responsibilities - from The Ize Family Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
What a wonderful card. Thank you, it put a smile on my face.
Lynn Thornquist. ========================================================================= Date: Fri, 8 May 1998 22:40:51 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: NephiRose <NephiRose@AOL.COM> Subject: Introduction of the Vicars Family Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Hi y'all, I'm sorta new to this. My name is Belinda Vicars. I have a baby girl (actually she's 21 mos., but still my baby <G>) with Apert Syndrome. Her name is Sarah Caitlin and she is the youngest of four children. (Logan, Kelsey, Ben and then Sarah) These past two years sure have been a WILD ride, a whole new world with all the surgeries. Odd to say, I'm glad. I've learned I could do it, the gavage feedings, the dressings, and nights spent in ICU. Sarah is working on her way to her sixth surgery in May. I wouldn't trade Sarah for anything :)
Bill (my husband) and I are both hearing impaired and use both English and American Sign Language in the home (Northern Utah). In fact Bill teaches sign language on the internet. Ain't that a kick? At first, we were crushed when we learned that Sarah's hands were deformed. How on earth would she communicate with us? Like I said, she's almost 2 years old and she hasn't spoken a word. Her soft cleft palate is still open, so she just babbles (part of her surgery this coming May 28th would be to fix that). But she signs about 6 words. She just learned them this past month. Just thrilled us to pieces. She also is still not walking independently. Sarah has taken to scooting on her butt 90 percent of the time <g>. She does walk along the walls using her hands to support her. She is in speech and occupational therapy twice a week. We are not sure about her hearing. Sarah has failed hearing tests five times, but she acts like she can hear sometimes. She is farsighted and wears glasses. She is not gavage fed anymore and feeds herself pretty good for a kid with only five teeth. She loves music, being outside, and playing with her brothers and sister. Very loving and cuddling. Like all children, she has her up days and bad days.
I really don't have a lot of basis to compare her to. The craniofacial dr (Dr. Louis Moralez) is excellent, but does not really give me a real picture of what to expect in growth. Is this about normal for a child with Apert's?
Next question is I do not have a basis in which to compare craniofacial doctors. As We only have one here in Utah at Primary Children's hospital. Is there a rating or a rank as to the best pediatric craniofacial doctors in US available?
Also, my husband applied for a position in Texas (which I fervently hope he gets because I hear it is WARM there. It is still snowing here believe it or not.) Where would be a good place to take Sarah if and when we move there? I heard Ken Salyer is a good one. Is he the only one?
Lots of questions <g>, but then again, it's my first time. I look forward to meeting you all. Thanks to the Ize family for the mother's day card.
Belinda ========================================================================= Date: Fri, 8 May 1998 23:06:30 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: Thornq <Thornq@AOL.COM> Subject: A Story To Live By Comments: cc: JEFSUEKAJA@aol.com, scs@acun.com Mime-Version: 1.0 Content-type: multipart/mixed; boundary="part0_894683191_boundary"
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Hello to all!
I just thought you all would enjoy this. It really gives you something to think about.
Lynn
A Story To Live By by Ann Wells (Los Angeles Times)
My brother-in-law opened the bottom drawer of my sister's bureau and lifted out a tissue-wrapped package. "This," he said, "is not a slip. This is lingerie." He discarded the tissue and handed me the slip.
It was exquisite; silk, handmade and trimmed with a cobweb of lace. The price tag with an astronomical figure on it was still attached. "Jan bought this the first time we went to New York, at least 8 or 9 years ago. She never wore it. She was saving it for a special occasion. Well, I guess this is the occasion." He took the slip from me and put it on the bed with the other clothes we were taking to the mortician. His hands lingered on the soft material for a moment, then he slammed the drawer shut and turned to me. "Don't ever save anything for a special occasion. Every day you're alive is a special occasion." I remembered those words through the funeral and the days that followed when I helped him and my niece attend to all the sad chores that follow an unexpected death. I thought about them on the plane returning to California from the Midwestern town where my sister's family lives. I thought about all the things that she hadn't seen or heard or done. I thought about the things that she had done without realizing that they were special. I'm still thinking about his words, and they've changed my life.
I'm reading more and dusting less. I'm sitting on the deck and admiring the view without fussing about the weeds in the garden. I'm spending more time with my family and friends and less time in committee meetings. Whenever possible, life should be a pattern of experience to savor, not endure. I'm trying to recognize these moments now and cherish them. I'm not "saving" anything; we use our good china and crystal for every special event-such as losing a pound, getting the sink unstopped, the first camellia blossom. I wear my good blazer to the market if I feel like it. My theory is if I look prosperous, I can shell out $28.49 for one small bag of groceries without wincing. I'm not saving my good perfume for special parties; clerks in hardware stores and tellers in banks have noses that function as well as my party-going friends'. "Someday" and "one of these days" are losing their grip on my vocabulary. If it's worth seeing or hearing or doing, I want to see and hear and do it now. I'm not sure what my sister would have done had she known that she wouldn't be here for the tomorrow we all take for granted. I think she would have called family members and a few close friends. She might have called a few former friends to apologize and mend fences for past squabbles. I like to think she would have gone out for a Chinese dinner, her favorite food. I'm guessing-I'll never know. It's those little things left undone that would make me angry if I knew that my hours were limited. Angry because I put off seeing good Friends whom I was going to get in touch with- someday. Angry because I hadn't written certain letters that I intended to write-one of these days. Angry and sorry that I didn't tell my husband and daughter often enough >>>> > how much I truly love them. I'm trying very hard not to put off, hold back, or save anything that would add laughter and luster to our lives. And every morning when I open my eyes, I tell myself that it is special. Every day, every minute, every breath truly is...a gift from God.
If you've received this it is because someone cares for you and it means there is probably at least someone for whom you care. If you're too busy to take the few minutes that it would take right now to forward this to ten people, would it be the first time you didn't do that little thing that would make a difference in your relationships? I can tell you it certainly won't be the last. I don't have to make up silly stories about people being hit by buses or crushed by falling disco balls for not sending this letter on. You've seen the result of this neglect in your own relationships that you have allowed to fade, dissolve, and fall into disrepair. Take this opportunity to set a new trend. Take a few minutes to send this to a few people you care about, just to let them know that you're thinking of them. It's even better if they're not the people you already correspond with every week. The more people that you send this to, the better luck you will have. And the better you'll get and reaching out to those you care about.
Here's the deal: Forward this letter to at least 10 different people; within 1 hour of receiving it. Do it, and reap what you sow: luck in love, people who care for you, and that warm glowy feeling that comes from loving others. Don't do it, and suffer the consequences of being alone, wrapped up in your own affairs, and being too busy to do the things you actually care about May love litter your life with blessings!
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Return-Path: <punchycat@email.msn.com> Received: from relay17.mx.aol.com (relay17.mail.aol.com [172.31.106.71]) by air05.mx.aol.com (vx) with SMTP; Fri, 08 May 1998 11:37:24 -0400 Received: from UPIMSSMTPUSR04 (smtp.email.msn.com [207.68.143.160]) by relay17.mx.aol.com (8.8.5/8.8.5/AOL-4.0.0) with ESMTP id LAA21007 for <thornq@aol.com>; Fri, 8 May 1998 11:37:23 -0400 (EDT) Received: from default - 153.35.79.136 by email.msn.com with Microsoft SMTPSVC; Fri, 8 May 1998 08:37:19 -0700 From: "Kristen&Don Dull" <punchycat@email.msn.com> To: <thornq@aol.com> Subject: Fw: A Story To Live By Date: Fri, 8 May 1998 11:36:24 -0400 X-Priority: 3 X-MSMail-Priority: Normal X-Mailer: Microsoft Outlook Express 4.71.1712.3 X-MimeOLE: Produced By Microsoft MimeOLE V4.71.1712.3 Message-ID: <0d7761937150858UPIMSSMTPUSR04@email.msn.com> Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
-----Original Message----- From: BRIAN BOROWSKI <cheeze1@email.msn.com> To: Kristen&Don Dull <punchycat@email.msn.com> Date: Friday, May 08, 1998 10:13 AM Subject: Fw: A Story To Live By
> >-----Original Message----- >From: Patricia A. Belisle <pbelisle@email.msn.com> >To: Jay Berman <jaybirdman@email.msn.com>; Gilles Berthelot ><rocky@simcoe.igs.net>; Dirk Cockburn <dcockburn@interhop.net>; Kelley >Dunning <kellmeister@email.msn.com>; Cathy & Reid Flowers ><reid@globetrotter.qc.ca>; Helen & Ormond Francis <ormond@planeteer.com>; >Futz <williams_photography@email.msn.com>; Linda A Hamann <linham@juno.com>; >Gary Hambley <GaryHambley@msn.com>; Alan L Hamil <diamond222@email.msn.com>; >Lisa Herzog <Morgaine@email.msn.com>; LadyDi <cheeze1@email.msn.com>; Bear >Leeman <Wyld_Hearts@email.msn.com>; Roy McWhirter ><mcwroy@globetrotter.qc.ca>; Daffy and Mike <hayesgramma@georgian.net>; >Moose <reklaw45@msn.com>; Melinda Orgar <mwriter@sympatico.ca>; Ronald D. >Patterson <patronst@email.msn.com>; Paul <Paul_Simon@msn.com>; pomps ><pomps@email.msn.com>; Reaper <Soul_Stealer@email.msn.com>; Susan Regimbald ><reg@bconnex.net>; Mike Shannon <shannons@ican.net>; Linda H. Taylor ><lhtaylor@netcom.ca>; Fred Tegtmeyer <hella@sympatico.ca>; Mariellen Venhola ><emvenho@bconnex.net> >Date: Thursday, May 07, 1998 9:04 AM >Subject: Fw: A Story To Live By > > >> >>-----Original Message----- >>From: Brown, Polly <Polly.Brown@can.xerox.com> >>To: debbiecu@burnt.canada.sun.COM <debbiecu@burnt.canada.sun.COM>; >>Ann.Moriarty@can.xerox.com <Ann.Moriarty@can.xerox.com>; >>IMCEAMHS-Agnes+20Moniz+40torho+2EXC@can.xerox.com >><IMCEAMHS-Agnes+20Moniz+40torho+2EXC@can.xerox.com>; >>IMCEAMHS-E043153+40sajnbcc@can.xerox.com >><IMCEAMHS-E043153+40sajnbcc@can.xerox.com>; Linda.Greenslade@can.xerox.com >><Linda.Greenslade@can.xerox.com>; Shawna.Corner@can.xerox.com >><Shawna.Corner@can.xerox.com>; Suzanne.Swanson@can.xerox.com >><Suzanne.Swanson@can.xerox.com>; sengel@compugen.com <sengel@compugen.com>; >>bev.oake@decisionone.ca <bev.oake@decisionone.ca>; >>SHEILA.BATARLA@unilever.com <SHEILA.BATARLA@unilever.com> >>Date: Wednesday, May 06, 1998 4:20 PM >>Subject: FW: A Story To Live By >> >> >>> >>> >>>> -----Original Message----- >>>> From: Murphy,Trish >>>> Sent: Wednesday, May 06, 1998 12:01 PM >>>> To: Muir, Fiona; Benigno, Jacqueline; Barrie, Karen; Ribeiro, Rose; >>>> Brown, Polly; Parkes, Maureen >>>> Subject: FW: A Story To Live By >>>> >>>> >>>> Sometimes corny is good --- >>>> Trish >>>> -----Original Message----- >>>> From: Plitz, Joni [SMTP:Joni.Plitz@can.Xerox.COM] >>>> Sent: Wednesday, May 06, 1998 11:08 AM >>>> To: Philip, Melanie; Triumbari, Antoinette; Shulman, Carolyn; >>>> DiGiovanni,Tina; Yeager, Debra; Foster, Helen; King, Fran; Lloyd, Patti; >>>> Murphy, Trish; Signoretti, Margaret >>>> Subject: FW: A Story To Live By >>>> >>>> >>>> >>>> > -----Original Message----- >>>> > From: Gambell, Leslie >>>> > Sent: Wednesday, May 06, 1998 10:27 AM >>>> > To: Cleva, Donna; Hitchin, Stephanie; Ferguson, Grace; Plitz, Joni; >>>> > McCabe, Christopher; '"Mom"'; 'McLellan,Julie'; 'Lopez,Jayne'; >'marlene >>>> > white'; 'James,Deon' >>>> > Subject: FW: A Story To Live By >>>> > >>>> > >>>> > >>>> > -----Original Message----- >>>> > From: Vicki Shaw [SMTP:vshaw@rci.rogers.com] >>>> > Sent: Wednesday, May 06, 1998 9:53 AM >>>> > To: Jill Sharland; Kelly Strueby; Nadir Merali; Tamara Mckee; Dave >>>> > Nolan; Baldwin Ng; Sharon Sprung; Brad.Neufeld@can.Xerox.COM; Jim >Chen; >>>> > lawaters@mobility.com; Leslie.Gambell@can.Xerox.COM >>>> > Subject: FW: A Story To Live By >>>> > >>>> > >>>> > ---------- >>>> > From: Sharon Helm >>>> > To: Sheri Landry; Arleen Knuttila; Lori Sawatzky; Sandra Mclean; Vicki >>>> > Shaw; Donna Paterson; Eldon Sebelius; EJ (Ijeoma) Ogoms; Kristi >>Stuart - >>>> > home; Mike Boyd >>>> > Subject: FW: A Story To Live By >>>> > Date: May 5, 1998 4:35PM >>>> > >>>> > Hmmmm...makes ya think, don't it? >>>> > >>>> > >>>> > A Story To Live By >>>> > by Ann Wells (Los Angeles Times) >>>> > >>>> > My brother-in-law opened the bottom drawer of my sister's bureau and >>>> > lifted out a tissue-wrapped package. "This," he said, "is not a slip. >>>> > This is lingerie." He discarded the tissue and handed me the slip. >>>> > >>>> > It was exquisite; silk, handmade and trimmed with a cobweb of lace. >The >>>> > price tag with an astronomical figure on it was still attached. "Jan >>>> > bought this the first time we went to New York, at least 8 or 9 years >>>> > ago. She never wore it. She was saving it for a special occasion. >Well, >>>> > I guess this is the occasion." >>>> > >>>> > He took the slip from me and put it on the bed with the other clothes >>we >>>> > were taking to the mortician. His hands lingered on the soft material >>>> > for a moment, then he slammed the drawer shut and turned to me. "Don't >>>> > ever save anything for a special occasion. Every day you're alive is a >>>> > special occasion." >>>> > >>>> > I remembered those words through the funeral and the days that >followed >>>> > when I helped him and my niece attend to all the sad chores that >follow >>>> > an unexpected death. I thought about them on the plane returning to >>>> > California from the Midwestern town where my sister's family lives. I >>>> > thought about all the things that she hadn't seen or heard or done. I >>>> > thought about the things that she had done without realizing that they >>>> > were special. I'm still thinking about his words, and they've changed >>my >>>> > life. >>>> > >>>> > I'm reading more and dusting less. I'm sitting on the deck and >admiring >>>> > the view without fussing about the weeds in the garden. I'm spending >>>> > more time with my family and friends and less time in committee >>>> > meetings. Whenever possible, life should be a pattern of experience to >>>> > savor, not endure. I'm trying to recognize these moments now and >>>> > cherish them. I'm not "saving" anything; we use our good china and >>>> > crystal for every special event-such as losing a pound, getting the >>sink >>>> > unstopped, the first camellia blossom. I wear my good blazer to the >>>> > market if I feel like it. My theory is if I look prosperous, I can >>shell >>>> > out $28.49 for one small bag of groceries without wincing. I'm not >>>> > saving my good perfume for special parties; clerks in hardware stores >>>> > and tellers in banks have noses that function as well as my >>party-going >>>> > friends'. >>>> > >>>> > "Someday" and "one of these days" are losing their grip on my >>>> > vocabulary. If it's worth seeing or hearing or doing, I want to see >>and >>>> > hear and do it now. I'm not sure what my sister would have done had >>she >>>> > known that she wouldn't be here for the tomorrow we all take for >>>> > granted. I think she would have called family members and a few close >>>> > friends. She might have called a few former friends to apologize and >>>> > mend fences for past squabbles. I like to think she would have gone >out >>>> > for a Chinese dinner, her favorite food. I'm guessing-I'll never know. >>>> > >>>> > It's those little things left undone that would make me angry if I >knew >>>> > that my hours were limited. Angry because I put off seeing good >Friends >>>> > whom I was going to get in touch with-someday. Angry because I hadn't >>>> > written certain letters that I intended to write-one of these days. >>>> > Angry and sorry that I didn't tell my husband and daughter often >enough >>>> > how much I truly love them. I'm trying very hard not to put off, hold >>>> > back, or save anything that would add laughter and luster to our >lives. >>>> > And every morning when I open my eyes, I tell myself that it is >>special. >>>> > >>>> > Every day, every minute, every breath truly is...a gift from God. >>>> > >>>> > If you've received this it is because someone cares for you and it >>means >>>> > there is probably at least someone for whom you care. If you're too >>busy >>>> > to take the few minutes that it would take right now to forward this >to >>>> > ten people, would it be the first time you didn't do that little thing >>>> > that would make a difference in your relationships? >>>> > >>>> > I can tell you it certainly won't be the last. I don't have to make >up >>>> > silly stories about people being hit by buses or crushed by falling >>>> > disco balls for not sending this letter on. You've seen the result of >>>> > this neglect in your own relationships that you have allowed to fade, >>>> > dissolve, and fall into disrepair. >>>> > >>>> > Take this opportunity to set a new trend. Take a few minutes to send >>>> > this to a few people you care about, just to let them know that you're >>>> > thinking of them. >>>> > >>>> > It's even better if they're not the people you already correspond with >>>> > every week. The more people that you send this to, the better luck >you >>>> > will have. And the better you'll get and reaching out to those you >>care >>>> > about. >>>> > >>>> > Here's the deal: >>>> > Forward this letter to at least 10 different people; within 1 hour of >>>> > receiving it. Do it, and reap what you sow: luck in love, people who >>>> > care for you, and that warm glowy feeling that comes from loving >>others. >>>> > >>>> > Don't do it, and suffer the consequences of being alone, wrapped up in >>>> > your own affairs, and being too busy to do the things you actually >care >>>> > about >>>> > >>>> > May love litter your life with blessings! >>> >>> >> >> > >
--part0_894683191_boundary-- ========================================================================= Date: Fri, 8 May 1998 23:13:50 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: Thornq <Thornq@AOL.COM> Subject: Re: Miss Vivi in Argentina! Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Ruth,
That is absolutely wonderful news. You can be guaranteed that the Thornquist family will be praying for them. I can't imagine why they wouldn't do the surgeries for free, I know that Dr. Upton has done them in the past, and I'm almost positive that Andrew's Craniofacial surgeon would do something like that. So it is not impossible to think that it could happen. Plus, at least in our hospital, there is such a thing as "free healthcare". Maybe it is different if you are coming from a different country, I don't know. But that is fabulous news and I wish them and you all the luck in getting ViVi here in the U.S.
Lynn Thornquist ========================================================================= Date: Sat, 9 May 1998 13:25:30 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "Allison's : GO USA, Inc" <gousa@KC.NET> Subject: Shawn's Surgery In-Reply-To: <611662c5.3553c9ef@aol.com> Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
Dear ListServe family!
Shawn Just got back home from his Cranial Reconstruction Surgery.
His surgery was Monday May 4th with Dr. Marsh in St. Louis. This was his 2nd cranial surgery and they gave Shawn a new look when they took him from a towering head to a shorter more natural look and fixed all of the flaws from front to back.
We were also expecting eye orbit repositioning and reconstruction but due to extreme wisdom by our Dr., he decided to wait due to factors that would have increased the risk of doing it during this surgery.
We also were very fortunate to have been able to see Dr. Joseph Upton from Boston. He was lecturing in St. Louis while we were recovering and he was very generous and made arrangements to see Shawn and give counsel on further surgeries. We are very appreciative and were very impressed with his expertise in the area of Apert Hands. We have heard he is the #1 Apert hand surgeon and would personally recommend him highly. Hopefully Shawn will get to travel to Boston to benefit from this man's talents and wisdom when the time comes for more hand surgeries.
Shawn says Hi!
Thank you for the prayers
Yours is Christ The Allison Family gousa@kc.net ========================================================================= Date: Sat, 9 May 1998 15:01:59 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: ChMathis <ChMathis@AOL.COM> Subject: Re: HAPPY MOTHER'S DAY Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
I also would like to wish all of us Mom's a Happy Mother's Day! (I won't forget the wonderful father's on their day!) I personally believe we were all chosen to take care of these wonderful angels because we have room enough in our hearts for them. I love my little angel very much and over time have come to be able to thank God with all my heart for Zoey. Thank you all for being there for us! Have a great weekend! Christina, Zoey and Tia Mathis From the still dry and snowing pollen, Southern Texas ========================================================================= Date: Sat, 9 May 1998 15:11:05 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: Miss Vivi in Argentina! Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Ruth, Thanks for sharing Vivi's story. Her and Kris are in our prayers. I'm always willing to help, but have trouble figuring out how to help. Just let us know. Have a great weekend. Christina Mathis ========================================================================= Date: Sat, 9 May 1998 15:52:06 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: ChMathis <ChMathis@AOL.COM> Subject: Re: Introduction of the Vicars Family Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Belinda and Family: Welcome to our little family. Your Sarah sounds great, alot like my Zoey. She's 15 months old and although only has had two surgeries, she's been hospitilized alot for respiratory problems. I know the hospital down here like the back of my hand. It's been rough, but worth it. Zoey also only scoots and doesn't show much interest in walking, but in her own time, I guess. She has a trach, which was put in at 3 weeks old, but breathes on her own except when she's sick. So, although a small inconvenience, we're quite used to it now. She's a wonderful, spunky little girl who loves to smile and LOVES her big sister, Tia who's 5 yrs old. If you want to join the Great Picture Exchange, you'll certainly get a picture of her. It's nice to see how other children are growing and changing like ours.
Here are a few of my "two cents" to your questions:
In a message dated 98-05-08 22:50:59 EDT, you write:
<< Is this about normal for a child with Apert's? About not knowing what to expect, I'm not sure if it's normal for all the kids, but it was for my daughter, Zoey. I was just given information on her first surgery and as far as the rest, it was up to how each surgery goes. Zoey's first cranialfacial surgery only gave her brain more room to grow, it didn't do anything to make her head look more "normal". Her cranialfacial doctor is Dr. Hardin (forgot his first name). I like him tremendously. However, he is currently a military doctor here at Wilford Hall Medical Center in San Antonio, Texas. It's kind of a touch and go for Zoey's upcoming surgeries. Frustrating, but I trust him alot.
Also, my husband applied for a position in Texas (which I fervently hope he gets because I hear it is WARM there. It is still snowing here believe it or not.) Where would be a good place to take Sarah if and when we move there? I heard Ken Salyer is a good one. Is he the only one? San Antonio is my home, so I don't want to say anything negative about Texas, however, my daughter's respiratory problems are horrendous and it makes me wonder if it has alot to do with the weather here. It's very humid and the allergins are terrible. This doesn't mean EVERYWHERE in Texas is like this, but I suppose if you're at all worried about her respiratory status, you might want to research before you pick Southern Texas. I hear Arizona is good for anyone with allergies or the such. Just food for thought. Maybe look into Northern Texas. It's definately warm here, very humid and snowing pollen right now as I speak. I've not heard of Ken Salyer, so I can't help you there.
Again, Welcome! Sincerely, Christina, Zoey and Tia Mathis From the still dry, humid, Southern Texas ========================================================================= Date: Sat, 9 May 1998 17:01:42 -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: Jack and Raquel <jara1@BELLSOUTH.NET> Subject: Happy Mother's Day MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Good afternoon all....
On behalf of the Miller family we want to wish all of the mothers a very HAPPY MOTHER'S DAY....
It is so exciting going to the mail box everyday to get those beautiful pictures, this past week we've received, Quentin, Colin, Seth, Mar Mar and Sarahs pictures, they are georgeous kids. I know I've said this before, but it is amazing how much alike our kids look. I think it going to be so great when Nicole is old enough to enjoy her scrap book that is growing and growing.
I'm glad to hear that Shawn is back and doing well from his surgery, we will continue to keep Shawn in our prayers.
I want to welcome the Vicars to our wonderful family, you will find great help in this listserv as I know all of us have. Everyone is so wonderful and helpful. I myself cannot help you much with your questions since our daughter Nicole is 7 months old and is yet to undergo her first surgery, which is now scheduled for June 11th God willing. We are from Florida and we have great doctors here also, but I know we have families in Texas that I am sure will answer your questions. Again welcome, and I look forward to continuing to hear from you and updates on you little Sarah who is the youngest of four the same as our Nicole.
Just want to give you all a little update on the happenings in our family, Nicole is doing much better from her cold, I will try to keep her in a plastic bubble in the next five weeks in hopes that she does not catch another one. Last night was a very long night for us, our son Steven (10) fell down while roller blading and broke his arm (he's the star pitcher for his little league team who are entering the allstar games next week, so much for that) anyway three hours in the emergency room cast all the way to his shoulders (boy are we going to have fun). But we are thankful that it was not a bad break just above his wrist, the doctor said his cast should come off in four weeks and should heal nicely. I guess this will give us something else to be concerned about in the next few weeks and maybe we won't dwell so much on Nicki's surgery. Anyway we are great and looking forward to a great mothers day.
May you all have a great weekend....
Raquel Miller in beautiful sunny south Florida.... ========================================================================= Date: Sat, 9 May 1998 17:21:09 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: NephiRose <NephiRose@AOL.COM> Subject: Re: Introduction of the Vicars Family Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Actually, San Antonio is where he applied for the job. We will find out in June. I didn't want Arizona because we would have to travel back to Utah every time we have surgery for Sarah. Utah's Primary Children Medical Center serves people from Arizona to Montana. I could do without the travel. Sarah isn't exactly fond of traveling:0) I have not noticed Sarah having any respiratory problems, just an awful lot of ear infections. They never really go away.
As for Sarah's walking, I'm not really sure way. I think it might be something to do with her ankles. They are bent rather weird, inward? She does stand for short periods, less than a minute. I don't really push it. Zoey sounds like a trouper. Do the doctors think she will eventually be rid of the trach, even during pollen season? You are right about the desert though. I grew up in the Mojave desert, the air is rather dry. It might be ideal, but they still have pollen and dust there so it is not allergy free.
How do I get involved with this Picture exchange? What is it?
Belinda ========================================================================= Date: Sat, 9 May 1998 17:27:28 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: NephiRose <NephiRose@AOL.COM> Subject: Re: Happy Mother's Day Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Thanks for the welcome. Happy mother's day to all, one richly deserved :0)
Good luck with Nicole Miller's upcoming surgery, her first. Right? Hope all goes well with her. Sarah's first one was when she was 3 months. It was nerve wracking at first, then after that initiation rite, the rest weren't so bad. <g> If that makes sense. I got used to it. ========================================================================= Date: Sat, 9 May 1998 15:04:11 -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: Robyn Johnston <robyn@ORDATA.COM> Subject: Re: Shawn's Surgery Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
Congrats on Shawn's success! Give your little boy a big hug for being so tough! Another hurdle overcome.
Hugs, Robyn Johnston
At 01:25 PM 5/9/98 -0500, you wrote: >Dear ListServe family! > >Shawn Just got back home from his Cranial Reconstruction Surgery. > >His surgery was Monday May 4th with Dr. Marsh in St. Louis. This was his >2nd cranial surgery and they gave Shawn a new look when they took him from >a towering head to a shorter more natural look and fixed all of the flaws >from front to back. > >We were also expecting eye orbit repositioning and reconstruction but due >to extreme wisdom by our Dr., he decided to wait due to factors that would >have increased the risk of doing it during this surgery. > >We also were very fortunate to have been able to see Dr. Joseph Upton from >Boston. He was lecturing in St. Louis while we were recovering and he was >very generous and made arrangements to see Shawn and give counsel on >further surgeries. We are very appreciative and were very impressed with >his expertise in the area of Apert Hands. We have heard he is the #1 Apert >hand surgeon and would personally recommend him highly. Hopefully Shawn >will get to travel to Boston to benefit from this man's talents and wisdom >when the time comes for more hand surgeries. > >Shawn says Hi! > >Thank you for the prayers > > > >Yours is Christ >The Allison Family >gousa@kc.net > ========================================================================= Date: Sat, 9 May 1998 18:44:23 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Yonstein <Yonstein@AOL.COM> Subject: Re: Shawn's Surgery Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Congrats on Shawn's surgery. Glad to hear he is doing so well.
Welcome to the Vicars family. I am sure you will find this family as helpful and supportive as I have. My daughter Emily is 9 months old, so I am still in the learning phase of things myself.
To Raquel, glad to hear Nicole is feeling better and hoping that Steven is ok with his arm.
Hope everyone else is well. I too feel like keeping Emily in a bubble for the next two weeks until sugery.
Have a good night.
Janine ========================================================================= Date: Sat, 9 May 1998 19:00:25 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: JReyesmich <JReyesmich@AOL.COM> Subject: Happy Mothers day Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Hi There.
I want you to know that I read your mails all the time, and I'm so happy for those kids whom are doing well, also I'm praying for all you. I want to thank you for give me the oportunities to share my little Vivi's problems.
I would like to wish all you Moms a Happy Mother's Day. Not only for this weekend , I whish you for each day of the year. Have a nice time.
A special greeting for Ruth and her family, Thanks Ruth. Claudia. ========================================================================= Date: Sat, 9 May 1998 21:04:32 -0600 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Chad & Denise Graham <cgraham@INFOAVE.NET> Subject: PICTURES MIME-version: 1.0 Content-type: text/plain; charset="us-ascii"
I received Quentin,Sarah Elizabeth, Mar Mar, Brenna, and Colin's pictures today!! It is so exciting to go to the mailbox and find mail for you and it is mail that you want to open!! I wish everyone a Happy Mother's Day! I think we all feel this day is a little more special than most. We know what it is about and we tend to be more thankful, because we know that in a moment our precious darlings could be gone.
To the Kilners, I am sure you are missing Ceci a whole bunch this weekend! I send you our love and support and of course our prayers! God Bless your family!
To the Harmons, I hope this letter finds BJ well! I know you too, know that this day is extra special!
Denise Graham ========================================================================= Date: Sat, 9 May 1998 23:32:50 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: GSieb91515 <GSieb91515@AOL.COM> Subject: Re: Introduction of the Vicars Family Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Welcome Vicars,
We are the Sieberts (Brenda, George, Melissa and Jonathan who was born on 12/6/96 with Aperts). We live in Houston, Tx and just had our second cranial surgery in Dallas by Dr. Ken Sayler. I can't tell you what a difference he made. A picture is worth a thousand words (they say). Jonathan's head had grown very tall and flat in the front since his first cranial surgery when he was 6 months old to release his coronal sutures and advance his forehead. He looks absolutely wonderful since the surgery. We just pray it stays this way. Dr. Salyer has a very big ego and is not always very pleasant, but I have to tell you I think he is probably one of the very best cranialfacial plastic surgeons around. He studied under Dr. Paul Tessier and has been doing these surgeries for at least 25 years or more. He sees far more than the average cranialfacial surgeon in a years time. I'm sure that has something to do with his bedside mannerism. However we feel that his skill far outweighs his personality. We have met other patients of his and have seen his work on a 34 year old male with Aperts that worked at the hoospital when Jonathan had his surgery. I have to tell you he looked fantastic. Dr. Salyer says that Jonathan would look even better if he had of done his first surgery when he was 6 months old. We are very pleased with the results and would do it again in a second knowing how well things turned out. Please let me know if I can give you anymore information, or if you would like to see before and after photos. Also, feel free to call me anytime on (281) 360-8573.
Welcome to the group. Hope all goes well for Sarah's upcoming palate surgery on the 28th.
Brenda Houston GSieb91515@aol.com ========================================================================= Date: Sat, 9 May 1998 23:36:54 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: GSieb91515 <GSieb91515@AOL.COM> Subject: Re: A Story To Live By Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Lynn,
This story is incredible. How true it is. We all live with tomorrows and laters and there really isn't anything other than today and we should live it to its fullest. I have really tried to start living my life that way and not let the little things get in the way. Thanks for sharing the story.
Brenda ========================================================================= Date: Sat, 9 May 1998 23:40:50 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: GSieb91515 <GSieb91515@AOL.COM> Subject: Re: Shawn's Surgery Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
So glad to hear that Shawn' surgery went so well. It sounds just like what we did in Dallas. Jonathan's head had grown very tall and his forehead had flattened out since his first surgery. They lowered the heigth and extended his forehead 20 mm. He looks great. Making the decision to do this surgery was a very difficult one to make but we are so glad that we did. Hope Shawn continues to have a good recovery and we will keep him in our prayers as well.
Brenda Houston ========================================================================= Date: Sat, 9 May 1998 23:48:54 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: GSieb91515 <GSieb91515@AOL.COM> Subject: Re: Happy Mother's Day Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Raquel - So sorry to hear about your Steven breaking his arm. As if you don't have enough to handle. Hope he is feeling better soon.
Thank you to the Johnston's and Zaengles. We received your photos today and they are adoreable.
Anne, I'm not looking forward to the school days either. I have heard the same story from so many parents and I just hope that I will be ready for the challenge when the time comes. Thanks for the letter.
HAPPY MOTHER'S DAY TO ALL! SIT BACK AND CHILL--
Brenda Houston ========================================================================= Date: Sun, 10 May 1998 17:52:22 -0400 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jack and Raquel <jara1@BELLSOUTH.NET> Subject: Soft spot MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Good afternoon all, I hope you are all having a great Mother's Day.
I have a question to whomever can answer. As you all know Nicole's surgery was postponed until June 11th due to her cold. Well, Nicole has a soft spot on the top of her head just above the hair line and a bigger soft spot on the back of her head. We have noticed in the past week that the soft spot in the front of her head is starting to puff up which we know its her brain that is growing. I know her neurosurgeon always checked for that so we will call him first thing tomorrow morning, I'm assumming he will want to see her. I don't know if that ever happend to any of your kids before they had their surgeries. Nicki has those big soft spots so that is why there hasn't been a rush in having her surgeries done. But now that the spot in the front is pertruding I don't know if that is no longer the case. I'm wondering if they will have to bring the surgery up a few weeks? I don't know I guess the doctor will know best, but I just can't help but worry. I know he mentioned to us that when the baby is crying it could pertrude and so on, but its puffy without her crying. Well, I guess I should stop worrying and wait until we see the doctor. Maybe some of you can shed a little light???
Talk later..
Raquel Miller in HOT south Florida..... ========================================================================= Date: Sun, 10 May 1998 22:24:40 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: Introduction of the Vicars Family Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Welcome to the Vicars Family,
My name is Lynn and my son, Andrew, has Apert. He is 20 months old. This is a wonderful family to be involved with. I think my stress level has definately calmed down some since I've been on the listerver. We are at a breaking point right now because Andrew's next surgery is not until he is three years old. At that point they will thin down his fingers.
Andrew has had two cranial surgeries, one plate removal, and two hand surgeries. His first surgery was when he was three months old. The only suture that was open in Andrew's skull was the top. The back of his head was completely flat and had a tight band around the top. Now after the surgeries all that looks different is that fact that he has one eye lower than the other. He will not need a midface advancement, only an orbital surgery to fix the eyes, and that will not be until he is 7 or 8 years old. His frontal advancement was done when he was 9 months old and they moved the frontal bone 3/4 of an inch forward. His surgeons are Dr. Upton, Dr. Mulliken, and Dr. Scott.
I hope you like it as much as I do here. They are a great group of people and if you ever need a question answered, you can be guaranteed you will get it answered. At least one person has dealt with one problem or another.
Glad to have you with us. Please e-mail your address, so we can get you on the picture exchange. Our address is.....
Lynn Thornquist Andrew 4 Taylor Road Holliston, MA 01746
Hope to talk to you real soon.
Lynn Thornq@aol.com ========================================================================= Date: Sun, 10 May 1998 22:37:26 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: Thornq <Thornq@AOL.COM> Subject: Re: Shawn's Surgery Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
I'm glad to hear everything went well with Shawn's surgery. I remember when Andrew had his frontal advancement, he looked so different afterwards. It was somewhat sad because I had gotten so used to what he looked like, it was like having another child. But today he looks so great, that I'm real happy about the change in appearance. I don't know if Shawn's surgery was that drastic, but they moved Andrew's frontal bone 3/4 of an inch forward, so it made a big difference.
I'm really glad to hear that you were able to meet Dr. Upton. Isn't he an amazing person, and very easy to talk to. He had told me he was going to St. Louis, but had forgotten to mention it to all of you. Sorry!!! Dr. Upton has done Andrew's hands and is still working on them. The next surgeries will be when he is 3. Hope Shawn's recovery is going well.
Lynn Thornq@aol.com ========================================================================= Date: Sun, 10 May 1998 21:35:10 -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: Soft spot Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
Hi Raquel,
I don't know I guess the >doctor will know best, but I just can't help but worry. I know he >mentioned to us that when the baby is crying it could pertrude and so >on, but its puffy without her crying.
I think you are right - that the Dr. knows the best. Brenna's soft spot did the same thing before her surgery too. She started to get a lump on the top of her forhead as that was where her soft spot was. It started to get puffy all of the time too. We did have the Dr. check it regularly until her surgery. As long as the pressure in the brain is normal, it should be ok, but it is better to be safe in my opinion.
Good luck with your little cutie! Hugs, Robyn
> ========================================================================= Date: Mon, 11 May 1998 00:39:02 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: NephiRose <NephiRose@AOL.COM> Subject: Re: Soft spot Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
In a message dated 98-05-10 17:50:01 EDT, you write:
<< But now that the spot in the front is pertruding I don't know if that is no longer the case. I'm wondering if they will have to bring the surgery up a few weeks? I don't know I guess the doctor will know best, but I just can't help but worry. I know he mentioned to us that when the baby is crying it could pertrude and so on, but its puffy without her crying. Well, I guess I should stop worrying and wait until we see the doctor. >>
If the soft spot is puffy and "hard"...skin really tight...That could be a sign of pressure on the brain. It should be giving her headaches and she should be crying more than normal (what is normal, I don't know :) ) I don't know if two weeks would matter, I'd call the doctor or speak with the nurse and ask. That's what I do. Sarah's never had that problem, even though I was paranoid about it. The doctor just told me what to look for. Hope this helps.
Belinda ========================================================================= Date: Mon, 11 May 1998 00:41:42 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: NephiRose <NephiRose@AOL.COM> Subject: Re: Introduction of the Vicars Family Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
In a message dated 98-05-10 22:25:08 EDT, you write:
My address is:
Belinda Vicars 993 North Aspen Way Layton, Ut 84040 (801) 546-6779
I'd like to be part of the picture exchange. What else do I need to do :)
Belinda ========================================================================= Date: Mon, 11 May 1998 00:38:22 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: Kakoor 112 <Kakoor112@AOL.COM> Subject: Requesting information Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Hello,
I am an elementary special education school teacher living in Houston. Next year I will have a 6 year old student with Apert. I would like to talk/communicate with parents willing to give me more detailed information on working with a child with Apert. I have obtained information from the internet, but first hand information would be of more value in helping my student.
Thank to anyone who would be able to help me.
Karen Arab De Zavala Elementary Houston, Tx. ========================================================================= Date: Sun, 10 May 1998 22:19:31 +0100 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Lori Hickman <hickman@WHIDBEY.COM> Subject: development of a resource Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
From: Lori Hickman P.O. Box 601 Langley, WA 98260 email: hickman@whidbey.com
Dear Parent:
My name is Lori Hickman and I am a Speech-Language Pathologist. I am currently working on a project related to the experience of parenting a child with challenges/disabilities.
I have worked in special education for 15 years. Over the years, I have found that much of the pain and frustration that many families of children with special needs face is caused by the lack of understanding, support and acceptance they receive from other family members, professionals working with their child, friends, and the community at large. It is my belief that the shortcomings of those of us who do not live with children that have special needs are often the result of a lack of any real understanding about the life-changing experience of living with special needs children.
l am hoping to develop a resource for professionals, extended family members, and friends of parents with special needs children that will allow them to experience what the challenges and the joys of raising a child with special needs can be through the words of parents who live this experience every day.
If you are the parent of a child with special needs, please review the questions below. If you would like to participate in the development of this resource, please answer the questions below and send them to me (at the mailing address given above or to the email address above) along with your name, address and phone number. I will contact you for written permission if I use your responses in any published form. Any information you share will remain confidential. Feel free to share this letter and questions with other parents.
Thank you.
Sincerely,
Lori Hickman, M.S., CCC-SLP
Skip any questions that do not apply to you or that you are uncomfortable answering.
Please give me as many real-life examples as possible in your responses.
1. What is your child's current diagnosis?
2. Tell me about your family; (who lives at your home, what are your children's ages?, what are the parent's ages?)
3. Describe a typical day at your house; i.e., what do you/your child/others in the home do from the time you wake up until you go to bed at night?
4. When did you find out that your child had challenges/disability(s)? Who gave you this information? How was it shared?
5. What was your reaction to #4 above?
6. Describe the response of others when you told them about your child's diagnosis/disability/challenges.
7. The process of coming to terms with the knowledge that your child will have special needs and challenges in life takes time and can be very difficult. Please describe this process as it applies to your and your child.
8. What are the most difficult aspects of your child's special challenges? a. for your child b. for you, personally c. for your family
9. In her book Changed by a Child, Barbara Gill provides insights into the positive growth that comes with supporting and advocating for a child with special needs. What are the joys/growth you have experienced because your child's special challenges?
10. What type of support system have you developed for you and your child? (extended family, friends, respite care, etc.)
11. Describe the participation/support of the following as you have experienced it (positive, negative, or neutral impact) a. educational system b. family c. friends d. community e. church (if applicable) f. other
12. What are your dreams for your child?
13. What are your major concerns regarding your child's future?
14. What do you anticipate that your child will be doing as an adult?
15. What/who has been the most helpful for your and your child?
16. What/who has been the least helpful?
17. What are your child's greatest challenges?
18. What are your child's greatest strengths?
19. If you could provide information to others about living the life of a parent with a child with challenges, what would you say to:
a. extended family b. educators c. physicians/medical personnel d. friends e. spouses f. siblings g. community h. parents of newly diagnosed children with challenges i. other
20. Other comments
Name address telephone # email address
send to: Lori Hickman P.O. Box 601 Langley, WA 98260 ========================================================================= Date: Mon, 11 May 1998 15:18:38 +1000 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Carol & Jason <carolh@HOTKEY.NET.AU> Subject: Re: Detection before delivery MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
I would like to know if anyone new about Aperts before delivery and how they picked this up was it done by scan or some other way.
I am not 4 months pregnant and was going to have this pregnance tested for Aperts by doing a blood sample but the blood taken from my daughter Ashleigh with Aperts was mucked up by pathology and I will not put her through this again as she gets terribly upset and ends up in a bad sweaty state which takes ages to calm her down so now I cannot be tested for this. I am most upset as to how pathology could make such a mistake as this. I have had a CVS and that test came up as all is OK thank God, but I still would like to have had this check done on the Aperts.
OH well Ill just stay positive Carol H. (here in freezing Australia)
Christine L. Clark wrote:
> > Has there been any cases, to anyone's knowledge, where Apert Syndrome was > > detected before the delivery? > > Of the many families I have been in contact with only about a handful > knew before birth that their child had Apert. Most people were surprised > in the delivery room. ========================================================================= Date: Mon, 11 May 1998 15:28:17 +1000 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Carol & Jason <carolh@HOTKEY.NET.AU> Subject: Re: walking MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Hi Brett & Heidee
My name is Carol and Im from down in Australia. My daughter Ashleigh is 3 years old on the 18th of this month and still does not walk. She has Physio and I walk her around by holding on to her hands but she does not pull herself up on furniture yet or has the desire to walk at all.
She gets around on her behind and is wearing her pants out. I am 4 months pregnant and hope she walks soon as I am finding her way to heavy to carry around. I'm sure she will get there someday soon, sooner the better. I feel she is very late in doing this as all the others seem to walk alot earlier. Ashleigh only started to finally bear weight on her legs about 6 months ago and I thought this would never happen but once she finally did this then everytime I tried to put her on the floor I could not get her to bend her legs.
It will happen believe me!! Carol
Brett and Heidee Lindsey wrote:
> Hi all- > > Thanks for all of the warm welcomes. This sight already felt like home > even when I was lurking! I have a question about walking. I know that > all kids walk at different times, but Josh has never had the desire to > bear weight on his legs. We had to trick him ( with the help of a great > PT) to start bearing weight. Even as an infant he would not do it. > Have any of you dealt with this? I would appreciate any help or > suggestions. And sometimes, just knowing that others have gone through > this circumstance, I feel better. > > Thanks! > > Heidee > > _____________________________________________________________________ > 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: Mon, 11 May 1998 08:42:37 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: Jenngram <Jenngram@AOL.COM> Subject: Re: Introduction of the Vicars Family Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
A quick welcome to the Vicars family. My son is Jordan and is almost 8 months old. hes had one cranial and oribital advancement surgery. He is scheduled for his thumb surgery next Mon. YIKES!!!!!!
I know ya'll will enjoy this new home as much as we have. Its definitly the best place in the world to vent your fears and frustrations.
Jenn (Tampa/St. Pete) ========================================================================= Date: Mon, 11 May 1998 08:51:52 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: Jenngram <Jenngram@AOL.COM> Subject: Re: Shawn's Surgery Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
A quick congrats to shawn on his past surgery. I know ya'll are thrilled to have him home recovering, and one more surgery under his belt. Heres hoping for a continued speedy recovery.
Jenn(Tampa/St. Pete) ========================================================================= Date: Mon, 11 May 1998 09:55:44 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: NephiRose <NephiRose@AOL.COM> Subject: Re: Detection before delivery Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
In a message dated 98-05-11 01:19:24 EDT, you write:
<< Christine L. Clark wrote:
> > Has there been any cases, to anyone's knowledge, where Apert Syndrome was > > detected before the delivery? > > Of the many families I have been in contact with only about a handful > knew before birth that their child had Apert. Most people were surprised > in the delivery room. >>
I knew when I was about four months pregnant via ultrasound followed up by an amnio...I'm not sure how to spell that <g> It was very difficult to find that out and even worse not knowing exactly what I was dealing with and worrying while I wait until she was born. The medical definition of Aperts always sounds worse than the actual thing. Finally, a genecist put my mind to ease, "She's a baby first, just like any other baby. Sarah just happens to have Aperts". THAT I could relate to. And it was true. Inspite of all the medical problems, she cuddled and cried like a baby. She needed to be fed and diapered like a baby. In those respects, she was normal.
Belinda ========================================================================= Date: Mon, 11 May 1998 10:01:11 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: NephiRose <NephiRose@AOL.COM> Subject: Re: walking Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
In a message dated 98-05-11 01:28:36 EDT, you write:
<< Thanks for all of the warm welcomes. This sight already felt like home > even when I was lurking! I have a question about walking. I know that > all kids walk at different times, but Josh has never had the desire to > bear weight on his legs. We had to trick him ( with the help of a great > PT) to start bearing weight. Even as an infant he would not do it. > Have any of you dealt with this? I would appreciate any help or > suggestions. And sometimes, just knowing that others have gone through > this circumstance, I feel better. > >>
Sarah is almost two years old and still not walking independently. She pulls herself up to stand and will do so for about a minute, but no more. She is also learning to walk along the walls, holding herself up. I think Apert children are just automatically delayed because of all their surgeries, and the joints being not the way they should be. She's lucky she can do what she can now. Same with your boy. He will walk, unfortunately on his own schedule. PT helped Sarah alot. If she's not walking by three, I'm tempted to put her on a walker. I'm not about to carry her, argh!
Good luck!
Belinda ========================================================================= Date: Mon, 11 May 1998 10:06:38 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: NephiRose <NephiRose@AOL.COM> Subject: Re: Introduction of the Vicars Family Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
In a message dated 98-05-11 08:43:13 EDT, you write:
<< A quick welcome to the Vicars family. My son is Jordan and is almost 8 months old. hes had one cranial and oribital advancement surgery. He is scheduled for his thumb surgery next Mon. YIKES!!!!!!
I know ya'll will enjoy this new home as much as we have. Its definitly the best place in the world to vent your fears and frustrations. >>
Good luck to you and Jordan. :) I can't wait for Sarah's next surgery on her hands (she eats with her hands still ) I hear peanut butter goes well with the dressings LOL
Belinda ========================================================================= Date: Mon, 11 May 1998 10:19:56 -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: Carbide Tech <ruth@CARBIDETECH.COM> Subject: Re: Requesting information MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit
Hi,
I'm excited to know that you will have a student next year in your class! Get ready for some fun! I would love to answer your questions, if I can. My daughter Kris, is 14 yrs, old (going on 20!) She is going to high school next year, (I cringe when I say that) She will be a "fish"- what we used to call a Freshman. And has been in the Deer Park ISD for most of her schooling. She was "mainstreamed" in fourth grade and to me that was the best thing they ever did to her. She shot up -big time. Alot of her work is modified, I don't like for her to be using her hands too much to write, because she gets tired. But I have noticed that she has "selective" tiredness, if you know what I mean! I would love to hear from that family, I thought we knew of most Apert's kids around this area, guess not. How old is she/he? And what grade ?
I want to congratulate you for being the kind of teacher that would take the time to find out about your students before they come into your classroom. I wish that more teachers took the time to know what they have coming. I hope you realize that you are not only helping yourself, but you are also doing alot for your student to come. It will help you understand where he/she is coming from.
I will tell you this, On Kris' kindergarten day, I asked the teacher if I could go and talk to the students about Kris and to answer any questions they had. I started off with how we are all diferent yet all the same, That I have brown eyes and you have blue that does not mean that we see different. I also mentioned skin and hair color. I told them (since we were in Kdg.) that when Kris was in my tummy her hands did not open properly but that the Drs. were going to work on them and make them right.
They had some questions, which I answered at their level and it really seemed to make a difference. They need someone to tell them not to stare or make rude remarks but ask. Kris didn't feel so "stared at" after that. Most all these kids are still with her in 8th grade and their treat her just like any other kid.
Sorry its so long! Please don't hesitate to contact me thru e-mail or you can call me. I'm only here (at work) from 9-3. wk(713)475-0444 or home 281-4793190.
Ruth Contreras
---------- > From: Kakoor 112 <Kakoor112@AOL.COM> > To: APERT@LISTSERV.AOL.COM > Subject: Requesting information > Date: Sunday, May 10, 1998 11:38 PM > > Hello, > > I am an elementary special education school teacher living in Houston. Next > year I will have a 6 year old student with Apert. I would like to > talk/communicate with parents willing to give me more detailed information on > working with a child with Apert. I have obtained information from the > internet, but first hand information would be of more value in helping my > student. > > Thank to anyone who would be able to help me. > > Karen Arab > De Zavala Elementary > Houston, Tx. ========================================================================= Date: Mon, 11 May 1998 10:26:49 -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: Carbide Tech <ruth@CARBIDETECH.COM> Subject: Sorry! MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit
Sorry guys! I accidently clicked on apert, instead of the teacher that was asking for info! But you can read also!
Talk to you later! ========================================================================= Date: Mon, 11 May 1998 11:38:51 -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: "Wittenburg, Mark" <Mark_Wittenburg@TEMPE.GOV> Subject: FW: Detection before delivery MIME-Version: 1.0 Content-Type: text/plain
> We knew at around 16 weeks gestation.......we had the AFP test which > indicated a higher range of protein than normal.......that lead to a > Level 2 Ultrasound which actually found the Apert head. They didn't > find the hands until the second Level 2 Ultrasound. > > A genetic specialist was at the delivery, and he gave the "official" > diagnosis at that time for insurance purposes. > > Subject: Re: Detection before delivery > Auto forwarded by a Rule > > I would like to know if anyone new about Aperts before delivery and > how they > picked this up was it done by scan or some other way. > > I am not 4 months pregnant and was going to have this pregnance tested > for > Aperts by doing a blood sample but the blood taken from my daughter > Ashleigh > with Aperts was mucked up by pathology and I will not put her through > this > again as she gets terribly upset and ends up in a bad sweaty state > which takes > ages to calm her down so now I cannot be tested for this. I am most > upset as > to how pathology could make such a mistake as this. > I have had a CVS and that test came up as all is OK thank God, but I > still > would like to have had this check done on the Aperts. > > OH well Ill just stay positive > Carol H. (here in freezing Australia) > > Christine L. Clark wrote: > > > > Has there been any cases, to anyone's knowledge, where Apert > Syndrome was > > > detected before the delivery? > > > > Of the many families I have been in contact with only about a > handful > > knew before birth that their child had Apert. Most people were > surprised > > in the delivery room. > ========================================================================= Date: Mon, 11 May 1998 15:51:25 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: ChMathis <ChMathis@AOL.COM> Subject: Re: Introduction of the Vicars Family Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Hello again. If Sarah doesn't have the respiratory problems, San Antonio probably won't be a bad place for ya'll to live. Be prepared for the humidity, once you get used to it, it's not so bad. I'm sure you'll find wonderful doctors here, I just don't know any names on the civilian side. Zoey's trach will come out once her cranialfacial surgeries are done to where she can breath out of her little nose. Zoey hasn't been diagnosed with allergies (maybe she should have been), so I don't know if the pollen is bothering her. She's actually back in the hospital as of today with more respiratory problems and it was snowing pollen last week, so maybe it does bother her. If you guys do come to San Antonio, I will be looking forward to it, I've only known one family here in San Antonio, and I don't see them much (except occasionally when we happen to be at the hospital around the same time), so the more, the merrier. Let me know! If someone hasn't answered you about the Picture Exchange, I just simply sent a message out and asked to be on it and it took a little time, but we are on it now. Take care. Christina, Zoey and Tia Mathis ========================================================================= Date: Mon, 11 May 1998 16:16:03 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: ChMathis <ChMathis@AOL.COM> Subject: Re: Detection before delivery Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Early on in my pregnacy with Zoey, an ultrasound was done and they discovered enlarged ventricles, then after ruling that out, they did another ultrasound and they couldn't get a clear picture of her hands, so they looked and looked and eventually gave up and scheduled another ultrasound. I suppose if they (or I) would have researched it, we could have guessed she might be an Apert baby, but no one did. They did an amniocentises (sp?) and it came out normal. So, I assumed she might have a birth defect, but nothing more. So, I still was surprised in the delivery room to see her. Christina, Zoey and Tia From Hot, humid San Antonio ========================================================================= Date: Mon, 11 May 1998 16:29:58 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: ize <ize@TACOMA.CEATLABS.OKSTATE.EDU> Subject: Re: Introduction of the Vicar MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Welcome to the Vicar's Family!
We are the Ize Family from Oklahoma. We have 2 1/2 twin boys Rafael and Felipe. (They are fraternal twins). Felipe was born with Apert's. It's nice to know that you are going to participate on the pictures exchange.
Best Wishes!
Pictures exchange addresses:
1. Rachel Fletcher 3900 Vernon Memphis, Tn 38122
2. Janine Krebs (Emily) 187 Rhode Island Avenue Massapequa, New York 11758
3. Andrea Gartner 11394 Royal Tee Cir. Cape Coral, FL 33991
4. Denise Graham (Daryl) 1030 Fairfield Pike Shelbyville, TN 37160
5. Ann Luxton and Howard and Amy Esler 6 Peter Mulgrew Street Avondale, Auckland 7 New Zealand
6. Jennifer Graham 6220 7th Ave North St. Petersburg, FL 33710
7. Carmen Rae Hill (Mike and Robin Hill) 70 Woodmoor Newnan, Georgia 30263
8. The Bacon Smith Family 100 Clarendon Road, NW Calgary, Alberta, Canada T2L 0P3
9. Carol Graves (Nicholas) 370 Oakland Rd Madison, AL 35758
10. Joanne Lindamood 1533 Regent Avenue Springfield, OH 45503
11. Raquel Miller (Nicole) 16703 Redwood Way Weston, Fl. 33326
12. Judy or Nick Amerman 1035 E. Fairview Ave. Morris, Il. 60450
13. The Sieberts 5226 Walnut Peak Ct. Kingwood, TX 77345
14. Felipe Ize 124 Brumley # 10 Stillwater, OK 74074
15. The Jennerjohns 6987 Ridgetop Dr. N E Kiezer, Oregon 97303
16. The Smith's (Patti, Daniel & Jasmyn) 1538 Morgan Road San Bernardino, CA 92407
17. Dori Jefferson 83 Pine Lane Murphysboro, IL 62901
18. The Lynch Family P.O. Box 609 Lake George, NY 12845
19. Quentin Zaengle 119 Tudor Drive North Wales, PA 19454
20. The Bailey Family RR 1, Box 74 El Paso, IL 61738
21. Lynn Thornquist 4 Taylor Road Holliston, MA 01746
22. Leann Maclean RR 2 Site 4 Box 35 Onoway, Alberta, Canada TOE 1VO
23. Roxanne Chan 16240 East McGill Road La Mirada, CA 90638
24. Vivi Zhang 2279 Pinehaven Dr. Niskayuna, NY 12309
25. Ellen Kelley (Holly) 411 Spring Mill Rd Anderson, IN 46013
26. Jennie Muggli Rt 1 Box 105C Weimar, TX 78962-9530
27. Kris Contreras 1422 N. Park Ridge Deer Park, TX 77536
28. Mark and Michele Smith 208 Connecticut Avenue Warren, PA 16365
29. Morgan Kaye McGahan 11 Elsway Road Short Hills, New Jersey 07078
30. Jones Family RR 3 Box 275 Middleburg, PA 17842
31. LeCara Family 8907 Gayguin Houston Texas 77088
32. Foster Family 1335 Sanderson Ave Scranton, PA 18509
33. Diane Youngblood 445 Horne Hollow Rd Culleoka, TN 38451
34. Robyn Jonston PO Box 25633 Eugene, OR 97402
35. The Contrinos 7310 Norman Road North Tonawanda, NY 14120
36. Marianne Camous & David Milburn Sarah Kate and Evan Milburn 412 Sycamore Street San Carlos, CA 94070
37. Margaret Iucker C/O Joana Magno 811 Moaniala St. Honolulu, HI 96821
38. Rene Tait 1909 Marten Avenue Comox, B.C. V9M 2J9 Canada
39. Nate Finch 10 Field Rd. Lexington, Ma 02173
40. Christina (Zoey) Mathis 7735 Branston San Antonio, TX 78250
41. The Kilner Family 6571 Sand Wedge CT Alexandria, VA 22312
42. Sara Younkin PO Box 534 Lewisburg, PA 17837
43. Steve and Stacy Bell (Brooke Leann) 8122 New Cut Rd. Severn, MD 21144
44. The Irvins (Alex) 47 South Hempstead Road Westerville, Ohio 43081
45. Claudia Mastellone 1310 40th Ave # A S.F CA 94122
46. Laura Pulido 392 S. Woods Avenue Los Angeles, CA 90022
47. Christine Clark Apert Support & Information Network PO Box 1184 Fair Oaks, CA 95628
48. Sarah, Tim & Bea Yenney C/O Magno 6616 24th Ave. S. Seattle, WA 98108
49. Belinda Vicars 993 North Aspen Way Layton, UT 84040
We have a total of 49 addresses. If we missed someone, please let us know. Thanks, The Ize Family. ========================================================================= Date: Mon, 11 May 1998 16:30:09 -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: Picture/thanks MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
We received Sarah's, Margaret's and Brenna's pictures. The girls are sooooo beautiful!!!! We loved Sarah's and Margaret's costumes. Sara will be in our prayer on the 15th. Hope everything goes well with her surgery. Caden is a cute little boy! Felipe is going to have his casts off on the 12th. Then we will take his picture and send to you all right away, including the Yenne's family. Thanks for beeing patient.
Hope that everything is well with everybody else. The Ize's ========================================================================= Date: Mon, 11 May 1998 16:07:04 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: NephiRose <NephiRose@AOL.COM> Subject: Zoey's breathing problems Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Hi back, I'm sorry to hear that Zoey is in the hospital. I do know what you mean by narrow breathing passage. Sarah has that but no where near as complicated as Zoey's. That's a tough road to go. I would love to meet you. :) If fate is smiling on us, perhaps we will move to San Antonio. It's been raining for a week now. Can you tell I have an aversion to cold? Hee. Good luck and may Zoey be home soon. :)
Belinda ========================================================================= Date: Mon, 11 May 1998 20:33:45 -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: Soft spot/Pictures MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Hi all....
Thanks to all of you that answered me and or gave me advise on the soft spot issue. We have an appointment tomorrow with the neurosurgeon so I will let you know what comes of it when we return. Like Robyn said it's better to be safe.
We received Sarah Le Cara (she reminds me of our Nicole) and Brenna's pictures today, what little dolls.
Robyn does Brenna have Aperts or is it Crouzons? Her hands look o.k. as if nothing was ever wrong with them. She is one cutie and those glasses just look adorible on her.
Well I've got to go for now, Nickie is crying for mama...
Raquel in hot hazy south Florida... ========================================================================= Date: Mon, 11 May 1998 21:09:42 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: GSieb91515 <GSieb91515@AOL.COM> Subject: Re: Requesting information Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Karen-
I live in Kingwood and have a 17 month old child with Apert syndrome. I would be happy to answer any questions you may have if it would help. However, I don't know if I can be of any specific help since Jonathan is still so young and has not yet entered the school system. Please let me know if I can be of any help though.
Brenda Siebert Houston GSieb91515@aol.com ========================================================================= Date: Tue, 12 May 1998 13:38:42 +1200 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Howard & Ann <howrdnan@IHUG.CO.NZ> Subject: The Great Photo Exchange Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
I do enjoy collecting the mail these days!
I think I have already thanked Daryl and Emily for their lovely photos. Thanks also to Carmen Rae, Ceci's family, Nicole, Seth, Margaret, Sarah Yenney, Brenna and Caden and Jordan for sending Amy (and us) their photos.
You threw me a bit with the Anne Geddes card Jenn, I'm not used to receiving these from the other side of the world! She does some amazing photos doesn't she - and from what we hear from friends of Howard who were involved in piloting her in the Northern Territories of Australia, she is very considerate of the babies as well.
Joana, certainly we will include the Yenney's on our mailing list. Don't the girls look great, I just love the hula outfits. I can believe they had a lovely time together, as when Amy and the other lass in Auckland who has Apert Syndrome get together it is as if they are the closest of friends, though they may not have met for six months.
Keep those photos and letters rolling in folks!!
Best wishes, Ann NZ ========================================================================= Date: Mon, 11 May 1998 21:44:13 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: JReyesmich <JReyesmich@AOL.COM> Subject: Seth's Allosaurus Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Hi,everyone. This is Claudia, I'm so happy, today I recieved Seth's pictures with a draw of his dinosaur.It's really nice .I'm just waiting por another one to send them togethers to Vivi. I also talked with my mom and she is going to send me Vivi's pictures to send them to you,I'll do it as soon I get them.
Claudia.
I hope everyone is doing well. Cheerios. ========================================================================= Date: Mon, 11 May 1998 21:28:57 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Laurie Bailey <jkb@ELPASO.NET> Subject: Picture Exchange MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit
Hey gang!
Thanks to all of you that we've received pictures from already! Finally, I got all of Jacob's cards done. They went out in the mail today. I didn't really have a picture that I really liked but, I chose the one that I thought was the best of that roll and sent them. I did run out so, some of you will get his Christmas picture which was before his second cranial surgery. So, there is some difference in his looks but, not a whole lot. We have tried twice now to get his 2 year picture taken but, he has not been cooperative. If we get them, and they turn out good, I'll try to send those out later.
I think this is a great idea and that we should try to do it again around Christmas time.
As always, Laurie Bailey jkb@elpaso.net ========================================================================= Date: Tue, 12 May 1998 14:52:14 +1200 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Howard & Ann <howrdnan@IHUG.CO.NZ> Subject: Peanut Butter Bandages (was Introduction of the Vicars Family) Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
>Good luck to you and Jordan. :) I can't wait for Sarah's next surgery on >her hands (she eats with her hands still ) I hear peanut butter goes well >with the dressings LOL
Belinda, if you put plastic bags over the dressings while she is eating (or playing outside, etc) that helps to keep them clean - then take them off and throw them away. Unfortunately it does mean it isn't safe for her to suck off the peanut butter!
Regards, Ann NZ ========================================================================= Date: Mon, 11 May 1998 22:56:05 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: WCMurph <WCMurph@AOL.COM> Subject: Re: Soft spot Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Raquel,
Funny you should bring this up. Our Sammy (4 mos old) was admitted to the hospital Sunday night because of a protruding softspot. He woke up with it Sunday morning and ended up vomitting that afternoon. We took him to the emergency room and they admitted him. They ran all sorts of tests looking for things such as a basic infection to menengitis--all negative. The neurosurgeons still aren't sure what to do with him. His ventricles are fine, but he does have a little bit of pressure--still within limits, though.
Has anyone had this type of situation come up for them where the doctors are stumped on the next course of action with a bulge? Sammy's regular neurosurgeon will see him tomorrow morning (May 12) to discuss our options--possibly a shunt to relieve the pressure and his bulge.
Anyway, my wife's intuition paid off (on Mother's Day even) and Sammy got the care he needed.
Bill Murphey ========================================================================= Date: Mon, 11 May 1998 22:17:31 -0600 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Brett and Heidee Lindsey <blhlfam@JUNO.COM> Subject: Re: soft spot
Raquel- You might have gotten a lot of responses about the soft fpot issue, but here's my 2 cents worth. Joshua's main soft spot was on his forehead. And as his surgery got closer, it bulged out more. The drs. told us not to worry unless Joshua's behavior changed. We were told to watch for signs of increased pressure - vomiting, excessive crying, or listlessness. Josh never had any of these symptoms. It was still a nerve wrenching time though.
Family- Josh is taking a long time recovering from this last hand surgery. I removed the bandages a few days ago. But he insists that I keep the socks on his hands. (I used new mens white cotton gym socks over his bandages to keep his from removing them and to keep them clean.) Finally, yesterday, I had had enough and just let him get mad. He is slowly getting used to his hand again. But his hands are still healing. I am wondering if his hands were just extra sensitive after being wrapped for so long. Oh well, so much for my rambling.
Good luck to all and up-coming surgeries and speedy recoveries to all, good night, Heidee Lindsey ========================================================================= Date: Tue, 12 May 1998 02:31:03 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: NephiRose <NephiRose@AOL.COM> Subject: Re: Peanut Butter Bandages (was Introduction of the Vicars Family) Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
In a message dated 98-05-11 22:52:33 EDT, you write:
<< if you put plastic bags over the dressings while she is eating (or playing outside, etc) that helps to keep them clean - then take them off and throw them away. Unfortunately it does mean it isn't safe for her to suck off the peanut butter! >> Would you believe I didn't even think of that? Great Idea. I'll try it.
Belinda ========================================================================= Date: Tue, 12 May 1998 21:05:20 +1200 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Howard & Ann <howrdnan@IHUG.CO.NZ> Subject: Hands (was soft spot) Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
Heidee, I never thought of putting socks on Amy's hands to keep her dressings clean, but I did use a long piece of tubular bandage which I put over her hand and wrist, twisted the digit end and then put back over up to her wrist and taped in place. You have reminded me that once Amy's bandages were removed she wore the cover alone for maybe three-five days until she got used to having free fingers and then was happy to go out without them. And I think we went through it every time she had hand surgery.
Maybe self-conscious, maybe sensitive skin, but definitely used to having them wrapped up. Totally understandable.
His hands will feel quite strange for a while and you may find him being very careful about what he does with them until he gets used to them. Just go with the flow so that it doesn't become a battleground for you, you've got more than enough to worry about.
Keep smiling, Ann NZ
At 10:17 PM 11/05/98 -0600, you wrote: >Family- >Josh is taking a long time recovering from this last hand surgery. I >removed the bandages a few days ago. But he insists that I keep the >socks on his hands. (I used new mens white cotton gym socks over his >bandages to keep his from removing them and to keep them clean.) >Finally, yesterday, I had had enough and just let him get mad. He is >slowly getting used to his hand again. But his hands are still healing. >I am wondering if his hands were just extra sensitive after being wrapped >for so long. Oh well, so much for my rambling. > >Good luck to all and up-coming surgeries and speedy recoveries to all, >good night, > Heidee Lindsey > > ========================================================================= Date: Tue, 12 May 1998 21:05:22 +1200 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Howard & Ann <howrdnan@IHUG.CO.NZ> Subject: Re: Requesting information Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
Greetings
Any chance of a bit more information about the degree of support this child needs? Does the child need support in speech, fine motor skills, gross motor skills, etc? You could end up with an overload of information that won't be needed! Though our children have the same Syndrome their needs are often different.
Regards, Ann NZ
At 12:38 AM 11/05/98 EDT, you wrote: >Hello, > >I am an elementary special education school teacher living in Houston. Next >year I will have a 6 year old student with Apert. I would like to >talk/communicate with parents willing to give me more detailed information on >working with a child with Apert. I have obtained information from the >internet, but first hand information would be of more value in helping my >student. > >Thank to anyone who would be able to help me. > >Karen Arab >De Zavala Elementary >Houston, Tx. > > ========================================================================= Date: Tue, 12 May 1998 08:46:13 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jenngram <Jenngram@AOL.COM> Subject: Re: hands Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
I have been wondering, and since most of these kids are so little they may not be able to answer us, but I would imagine the new fingers often feel weird. If you've ever had surgery, C-section or something else..then you may remember how funny the area felt for a while b/c the nerves had been damaged. I would think the same would pertain to these little guys and girls hands. Sorta that pins and needles feeling....kinnda like when your hand or leg is falling asleep. I actually had my kidney out when I was younger (don't ever jump off a roof unless its on fire), and the pins and needles sensation lasted close to 8 years in lesser degress as time passed. My C-Section nerve issue went away much sooner. So perhaps the aversion is that it feels funny?????? And they don't know why or how to make it stop???? Maybe????? Who knows!!!!!! Hopefully time will reslove this..... we hope at least b/c we start the tedious hand surgeries in a few days!!!
Jenn(Tampa/St. Pete) ========================================================================= Date: Tue, 12 May 1998 13:28:45 -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: NIck's picture MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit
Hi all, NIck's pictures will be out tomorrow. Got three different poses being made right now. Have to pick them up in a little while. So you'll either see him on a swing or else on the birthday bike. Judy ========================================================================= Date: Tue, 12 May 1998 15:27:40 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: Coming to a mailbox near you Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Hi everyone,
My pictures will be in the mail this weekend. I'm sorry I didn't send them out sooner, when I said I was going to. It was finals weeks and I was going crazy studing my brain for Algebra and Psychology, (Passed them both.. yessssss!) and registering for summer classes. I will be sending them out this Saturday. Just need to print out my new page and stamp the enveloples.
I'm glad to hear everyone is well. How's BJ doing? He's always in my thoughts.
-Andrea ========================================================================= Date: Tue, 12 May 1998 21:10:22 +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: second day!
Hello family!
I received Sarah's pictures today!! What a cutie! I can't wait to see who else will be popping up in my mailbox! My photos are still in the making. It has been a busy couple of weeks! You will meet my family soon, I promise.
Today was my second full day on the new job and I am having a ball! I am learning the routines and meeting the people I will be serving. This one group of ladies has me laughing the whole time I am with them.. we were singing this morning and one of them said,"Good God, I might be old but I know well enough to know when to stop singing." I guess we were off key! This new path is good!
I too am wondering about BJ. We have not heard anything from the ranch in a while.
Hope all is well. Joanne, in Ohio sunny, and finally warming up! ========================================================================= Date: Tue, 12 May 1998 21:52:40 -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: Soft Spot MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Hi all...
Well we visited the neurosurgeon today to get Nicole's soft spot checked as to why it was pertruding. The doctor put our minds at ease we he explained to us that when babies have colds the outer area of the brain tends to swell up thus creates changes in the soft spot. But of course in a baby with Aperts it is more noticeable. Since Nicki has not had any change in behavior he is not concerned, he just told us to watch her and hopefully when the cold goes away the swelling should also. But of course to monitor her and if it does not go down to give him a call and he will order a CT scan to make sure everything is o.k. Nicki still has room for her brain to grow so that is why he is not too concerned and everything should be o.k. for surgery on June 11th. Please keep in mind that the way I explained it is not the way he explained it you know doctor talk and all. But nevertheless we feel a lot better.
Bill I hope that Sammy is better and that his swelling has gone down, please keep us informed....
Well good night all...
Raquel Miller.... ========================================================================= Date: Tue, 12 May 1998 23:17:53 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: ChMathis <ChMathis@AOL.COM> Subject: Re: Zoey's breathing problems Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Belinda: Thank you for wishing Zoey well, Zoey will be (God willing) going home tomorrow. They said she probably could have come home today, but I was getting my braces put on today and they knew I'd be gone most of the afternoon. First thing tomorrow! Take care and goodnight. Christina, Zoey and Tia Mathis ========================================================================= Date: Tue, 12 May 1998 23:26:51 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: ChMathis <ChMathis@AOL.COM> Subject: Re: The Great Photo Exchange Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
I have recieved pictures of the Johnstons, Emily, Sarah L. and Sarah Y., and a gorgeous little boy wearing a red striped shirt that read "Jeanswear". I'm so sorry, but I throw the envelopes away, and when I was going through the pictures to organize, realized his name wasn't on the back. Will the parents of this little boy please come forward, so that I might get his name on the picture? He's adorable! Little Sarah LeCara has alot of the same features that my Zoey has! With her trach too! They'd pass as sisters, I'm sure. I'm sorry to hear about her having pneumonia on her 1st birthday, Zoey was home for her first birthday, but was hospitalized about three days later. Keep 'em coming, Zoey's will be out soon, I promice. Goodnight all, The Mathis' ========================================================================= Date: Tue, 12 May 1998 21:58:50 -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: Soft spot/Pictures Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
Hi Raquel,
>Robyn does Brenna have Aperts or is it Crouzons? Her hands look o.k. as >if nothing was ever wrong with them. She is one cutie and those glasses >just look adorible on her.
Thanks, we call them her little 'Elton John' glasses. They were a challenge to get her to wear, but now she is doing great with them!!! See what a little computer game bribing will do! ;-) Yes, she does have Crouzons, and her extremities were not affected at all. Her CF pediatrician thinks she has a type of Crouzons that has more Aperts facial characteristics - minus the syndactly. (a FGFR3 mutation) We might have her genetically tested in the future, but all of our kiddo's seem to all have all sorts of variations. They are all unique in their special ways.
Good luck tomorrow at the neurosurgeons. I hope all is well. Hugs, Robyn ========================================================================= Date: Wed, 13 May 1998 01:53:26 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: JPayne5634 <JPayne5634@AOL.COM> Subject: Fwd: IRC Chat Nite Tonite 5/13 Mime-Version: 1.0 Content-type: multipart/mixed; boundary="part0_895038806_boundary"
This is a multi-part message in MIME format.
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From: JPayne5634 <JPayne5634@aol.com> Return-path: <JPayne5634@aol.com> To: crouzon@u.washington.edu Subject: IRC Chat Nite Tonite 5/13 Date: Wed, 13 May 1998 01:52:23 EDT Organization: AOL (http://www.aol.com) Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Hi Everyone.
Tonite is IRC Big Chat Nite!! So let's get acquainted with each other!! Keep in mind that some people will show up a little later than the time started!! Please join us!!
Date to Meet on: May 13.1998
IRC Server: ChatNet (Any location)
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 dont have to be a member to join AOL IM and it is free!!! AOL IM is a one to one online chat. My AOL im is Lauren1273
Hugs. Lauren
--part0_895038806_boundary-- ========================================================================= Date: Wed, 13 May 1998 08:45:48 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "D. Jefferson" <djeff@MIDWEST.NET> Subject: Re: Seizures MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit
Friends:
I may have asked this question before, however, I would like to ask it again. Have any of your children had seizures?
Seth has had mild seizures since he was three. They happen just a few times of the year. Usually in the fall and spring. I have noticed lately that he must be having them at night because the last three times he has had difficulty getting up in the morning. He is normally an early riser, he likes to get an early start on the day. After I finally wake him up, he goes into a seizure at the breakfast table. We had a neurologist exam him a few years ago. He did not want to intervene medically since the seizures were so infrequent.
Just wondering.
Received Colin, Quentin, Margaret and Elizabeth's photo's Saturday. I can not believe how big Colin is. He was around five the last time we saw him. Quentin sure has nice hands. Margaret and Elisabeth are beautiful in their Hawaiian outfits. Whenever I get a new picture, Rick always says, "Well, now, isn't that a familiar looking face." It is so nice to have album filling with beautiful children who resemble our Seth. They could all be brothers and sisters.
Welcome to the new families.
Warmly, Dori
Dori A. Jefferson djeff@midwest.net ========================================================================= Date: Wed, 13 May 1998 09:13:43 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Bob Horning <Bob.Horning@CORP.HONEYWELL.COM> Subject: Re: Seizures
> I may have asked this question before, however, I would like to ask it > again. Have any of your children had seizures?
Dori
Krista has had a couple seizures but both were related to the onset of a fever. The first one was due to Roseolla and the second one announced the arrival of chicken pox. It sounds like Seth's seizures are due to something other than fever.
Bob Horning ========================================================================= Date: Wed, 13 May 1998 10:23:02 -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: Re: Seizures MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit
Hi Bob,
Regarding the seizures. Our story is rather complicated but to make a long story short, Kris had a nasal procedure done in June 96 which got terribly infected. Her forehead was huge with pus, (I guess) her forehead was so extented that if I day it was about 3-4" out, I probably would not be exxagerating. (sp) Anyway, she was re-admitted, put on ABs for 1 week, and we are talking BIG time ABs, they were so strong they had to check her blood levels before the meds and after the meds, I can't quite remember exactly what they would check, but they did. Anyway, that was in June, we came home with a home health nurse, She had to have another surgery to "correct" the first one, really to "wash" it out real good. and then another one to insert a main line for these strong abs. She had them removed a week before school started, you can imagine what type of summer she had! That November, she was in bed with me, (as soon as my husband leaves for work, she always comes to my bed) at 6:30am she started having this real bad seizure in my bed, as you can probably imagine it scared me to death. I realized what was happening and called 911. They rushed her to Texas Children's Hosp. and basically they said, "Oh, well, one of those things" We were very upset. We wanted answers! We told them what had happened in June (like they don't have her records) but they played it off like "No, it can not be that" So they told us to go home, no big deal, And me with this big burden on me, knowing that this was something that she had never done, How dare they tell me "maybe she's had them but you have not noticed" That was on a Friday. The following Wed. @ 4:00am, she had another one, by that time I had already read alot on that issue, so I know just to watch and be careful that she not bite herself, etc. She had another one @ 7:00am, at 9:50am, I told my husband you know shes had them at 3 hrs. intervals, maybe she'll get one @10:00am, No sooner had he said, "No, NO, she'll be fine" When she started having another one, but this time it was different, she was turning blue on me, I called 911 again, and they rushed her to TCH, again, no answers, just she needs anti-seizure meds. Well, we wanted answers! I told my husband lets get out of here, I asked for a referral to another Dr. away from the Medical Center. And this Dr. ordered test after test and she found an answer for us. When she had the abscess in her forehead/brain there was some left right in a delicate area of her head that was too difficult to even suggest removing it. The risks far outweigh the benefits. She has not had another seizure since that time. I'm wondering if she needs to continue this medication forever?
Im sorry I wrote you a book! But I felt you needed to know the circumstances, right?
Love,
Ruth Contreras (kris' mom)
---------- > From: Bob Horning <Bob.Horning@CORP.HONEYWELL.COM> > To: APERT@LISTSERV.AOL.COM > Subject: Re: Seizures > Date: Wednesday, May 13, 1998 9:13 AM > > > I may have asked this question before, however, I would like to ask it > > again. Have any of your children had seizures? > > Dori > > Krista has had a couple seizures but both were related to the onset of a fever. The first one was due to Roseolla and the second one announced the arrival of chicken pox. It sounds like Seth's seizures are due to something other than fever. > > Bob Horning ========================================================================= Date: Wed, 13 May 1998 12:12:59 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jenngram <Jenngram@AOL.COM> Subject: Re: Seizures Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
OHHHHHHHHHHHHHH, how I hate the,"maybe its been going on and you haven't noticed" More likely its, "why don't you want to take the time to figure OUT why its happening"
Glad you found the answers though..must've scared you beyond belief...
Jenn(Tampa/St. Pete......very very DRY Tampa/St. Pete) ========================================================================= Date: Wed, 13 May 1998 12:27:44 -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: Seizures MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit
Our neuro-surgeon told us that seizures CAN BE a sign of hydrocephalus and/or shunt malfunction. Does Seth have a shunt? Been tested for hydrocephalus? Just a thought, may want to look into having a CT scan to make sure.
Robin Hill
---------- > From: D. Jefferson <djeff@MIDWEST.NET> > To: APERT@LISTSERV.AOL.COM > Subject: Re: Seizures > Date: Wednesday, May 13, 1998 9:45 AM > > Friends: > > I may have asked this question before, however, I would like to ask it > again. Have any of your children had seizures? > > Seth has had mild seizures since he was three. They happen just a few > times of the year. Usually in the fall and spring. I have noticed lately > that he must be having them at night because the last three times he has > had difficulty getting up in the morning. He is normally an early riser, > he likes to get an early start on the day. After I finally wake him up, he > goes into a seizure at the breakfast table. We had a neurologist exam him > a few years ago. He did not want to intervene medically since the seizures > were so infrequent. > > Just wondering. > > Received Colin, Quentin, Margaret and Elizabeth's photo's Saturday. I can > not believe how big Colin is. He was around five the last time we saw him. > Quentin sure has nice hands. Margaret and Elisabeth are beautiful in > their Hawaiian outfits. Whenever I get a new picture, Rick always says, > "Well, now, isn't that a familiar looking face." It is so nice to have > album filling with beautiful children who resemble our Seth. They could > all be brothers and sisters. > > Welcome to the new families. > > Warmly, Dori > > Dori A. Jefferson > djeff@midwest.net ========================================================================= Date: Wed, 13 May 1998 12:42:00 -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: The Great Photo Exchange MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit
Will Quentin Zaengle please stand up??? He's the one in the red striped "Jeanswear" shirt!!!! I am not his parent; however, I still have the envelope his picture came in!!! I immediately wrote his name on the back so I wouldn't forget!!!
Hope this helps!
Robin Hill ---------- > From: ChMathis <ChMathis@AOL.COM> > To: APERT@LISTSERV.AOL.COM > Subject: Re: The Great Photo Exchange > Date: Tuesday, May 12, 1998 11:26 PM > > I have recieved pictures of the Johnstons, Emily, Sarah L. and Sarah Y., and a > gorgeous little boy wearing a red striped shirt that read "Jeanswear". I'm so > sorry, but I throw the envelopes away, and when I was going through the > pictures to organize, realized his name wasn't on the back. Will the parents > of this little boy please come forward, so that I might get his name on the > picture? He's adorable! Little Sarah LeCara has alot of the same features > that my Zoey has! With her trach too! They'd pass as sisters, I'm sure. I'm > sorry to hear about her having pneumonia on her 1st birthday, Zoey was home > for her first birthday, but was hospitalized about three days later. Keep 'em > coming, Zoey's will be out soon, I promice. > Goodnight all, > The Mathis' ========================================================================= Date: Wed, 13 May 1998 15:54:43 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: ize <ize@TACOMA.CEATLABS.OKSTATE.EDU> Subject: Re: Mailing List MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Howard & Ann wrote: > > Just letting you know your count matches ours. > > Isn't it wonderful getting all these wonderful pictures! > > Best wishes, > Ann > NZ
Yes, it is wonderful to receive friends pictures!!! It's so nice to go to the mail box and finding a new face almost every day. Finally, yesterday Felipe got his casts off and his feet are looking fabulous. It is good to know that we are not going to have shoes problem anymore. Today we are going to take pictures and you may look to see Felipe and his twin brother Rafael by the end of next week or so. Good to know that my count matches yours. Thanks for that!
The Ize's. ========================================================================= Date: Wed, 13 May 1998 17:11:54 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: Thornq <Thornq@AOL.COM> Subject: Fw: The Present Mime-Version: 1.0 Content-type: multipart/mixed; boundary="part0_895093915_boundary"
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Hello to all of my friends!
I thought you would enjoy this. It really makes you think about life. I know I have been sending alot of these, but it said you should send it to people who mean alot to you and all I could think of was all my buddies on the listserver. Enjoy!!!!\
Lynn Thornquist
THE PRESENT
Imagine there is a bank that credits your account each morning with $86,400. It carries over no balance from day to day. Every evening it deletes whatever part of the balance you failed to use during the day. What would you do? Draw out every cent, of course! Each of us has such a bank. It's name is TIME.
Every morning, it credits you with 86,400 seconds. Every night it writes off, as lost whatever of this you have failed to invest to good purpose. It carries over no balance. It allows no overdraft. Each day it opens a new account for your. Each night it burns the day's deposits; the loss is yours.
There is no going back. There is no drawing against the "tomorrow." You must live in the present on today's deposits. Invest it so as to get from it the utmost in health, happiness, and success! The clock is running. Make the most of today.
To realize the value of ONE YEAR, ask a student who failed a grade.
To realize the value of ONE MONTH, ask a mother who gave birth to a pre-mature baby.
To realize the value of ONE WEEK, ask the editior of a weekly newspaper.
To realize the the value of ONE DAY, ask a daily wage laborer with kids to feed.
To realize the value of ONE HOUR, ask the lovers who are waiting to meet.
To realize the value of ONE MINUTE, a sk the man who missed his train.
To realize the value of ONE SECOND, ask the person who just avoid an accident.
To realize the value of ONE MILLISECOND, ask the person who won a silver medal in the Olympics.
Treasure every moment that you have! And treasure it more because you've shared it with someone special--special enough to share your time. And remember that time waits for no one.
Yesterday is history. Tomorrow is a mystery. Today is a gift. That's why it's called, "the present."
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Return-Path: <punchycat@email.msn.com> Received: from relay29.mx.aol.com (relay29.mail.aol.com [172.31.109.29]) by air15.mx.aol.com (v43.10) with SMTP; Wed, 13 May 1998 16:13:49 -0400 Received: from UPIMSSMTPUSR04 (smtp.email.msn.com [207.68.143.160]) by relay29.mx.aol.com (8.8.5/8.8.5/AOL-4.0.0) with ESMTP id QAA08256 for <thornq@aol.com>; Wed, 13 May 1998 16:13:46 -0400 (EDT) Received: from default - 153.35.72.201 by email.msn.com with Microsoft SMTPSVC; Wed, 13 May 1998 13:13:38 -0700 From: "Kristen&Don Dull" <punchycat@email.msn.com> To: <thornq@aol.com> Subject: Fw: The Present_____PI CAFE' 05-07-98 Date: Wed, 13 May 1998 16:12:38 -0400 Message-ID: <01bd7eab$7a0b24e0$c9482399@default> X-Priority: 3 X-MSMail-Priority: Normal X-Mailer: Microsoft Outlook Express 4.71.1712.3 X-MimeOLE: Produced By Microsoft MimeOLE V4.71.1712.3 Mime-Version: 1.0 Content-type: multipart/mixed; boundary="part1_895093915_boundary"
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-----Original Message----- From: Bruce K. Fox <lyndashepard@email.msn.com> To: kristen dunn <punchycat@email.msn.com> Date: Wednesday, May 13, 1998 2:56 PM Subject: The Present_____PI CAFE' 05-07-98
THE PRESENT
Imagine there is a bank that credits your account each morning with $86,400. It carries over no balance from day to day. Every evening it deletes whatever part of the balance you failed to use during the day. What would you do? Draw out every cent, of course! Each of us has such a bank. It's name is TIME.
Every morning, it credits you with 86,400 seconds. Every night it writes off, as lost whatever of this you have failed to invest to good purpose. It carries over no balance. It allows no overdraft. Each day it opens a new account for your. Each night it burns the day's deposits; the loss is yours.
There is no going back. There is no drawing against the "tomorrow." You must live in the present on today's deposits. Invest it so as to get from it the utmost in health, happiness, and success! The clock is running. Make the most of today.
To realize the value of ONE YEAR, ask a student who failed a grade.
To realize the value of ONE MONTH, ask a mother who gave birth to a pre-mature baby.
To realize the value of ONE WEEK, ask the editior of a weekly newspaper.
To realize the the value of ONE DAY, ask a daily wage laborer with kids to feed.
To realize the value of ONE HOUR, ask the lovers who are waiting to meet.
To realize the value of ONE MINUTE, a sk the man who missed his train.
To realize the value of ONE SECOND, ask the person who just avoid an accident.
To realize the value of ONE MILLISECOND, ask the person who won a silver medal in the Olympics.
Treasure every moment that you have! And treasure it more because you've shared it with someone special--special enough to share your time. And remember that time waits for no one.
Yesterday is history. Tomorrow is a mystery. Today is a gift. That's why it's called, "the present."
------------------------------------------------------------------------------ --
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PI Cafe' 05-07-98
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-----Original Message----- From: Bruce K. Fox <lyndashepard@email.msn.com> To: kristen dunn <punchycat@email.msn.com> Date: Wednesday, May 13, 1998 2:56 PM Subject: The Present_____PI CAFE' 05-07-98
THE PRESENT
Imagine there is a bank that=3D20 credits your account each morning with $86,400. It carries over no balance from day to day. Every evening it deletes whatever part of the balance you failed to use during the day. What would you do? Draw out every cent, of course! Each of us has such a bank. It's name is TIME.
Every morning, it credits you with 86,400 seconds. Every night it writes off, as lost whatever of this you have failed to invest to good purpose. It carries over no balance. It allows no overdraft. Each day it opens a new account for your. Each night it burns the day's deposits; the loss is yours.
There is no going back. There is no drawing against the "tomorrow." You must live in the present on today's deposits. Invest it so as to get from it the utmost in health, happiness, and =3D success! The clock is running. Make the most of today.
To realize the value of ONE YEAR,=3D20 ask a student who failed a grade.
To realize the value of ONE MONTH, ask a mother who gave birth to a pre-mature baby.
To realize the value of ONE WEEK,=3D20 ask the editior of a weekly newspaper.
To realize the the value of ONE DAY, ask a daily wage laborer with kids to feed.
To realize the value of ONE HOUR,=3D20 ask the lovers who are waiting to meet.
To realize the value of ONE MINUTE, a sk the man who missed his train.
To realize the value of ONE SECOND,=3D20 ask the person who just avoid an accident.
To realize the value of ONE MILLISECOND,=3D20 ask the person who won a silver medal in the Olympics.
Treasure every moment that you have! And treasure it more because you've shared it with someone=3D20 special--special enough to share your time. And remember that time waits for no one.
Yesterday is history. Tomorrow is a mystery. Today is a gift. That's why it's called, "the present."
-------------------------------------------------------------------------= =3D -------
This Page =3D20 Has Music =3D20 Please Sign Guestbook =3D20 If You have a special Friend that you would=3D20 Like to remember in a special way.... PASS THIS ON =3D20 You were Special Friend Number =3D20 LE FastCounter =3D20 =3D20 =3D20 =3D20 =3D20 =3D20
PI Cafe' 05-07-98
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<META content=3D3Dtext/html;charset=3D3Dx-user-defined =3D http-equiv=3D3DContent-Type><TITLE>The Present_____PI CAFE' =3D 05-07-98</TITLE><!DOCTYPE HTML PUBLIC "-//W3C//DTD W3 HTML//EN"><BASE=3D2= 0 href=3D3Dhttp://members.tripod.com/~dr5000/Thepresent/index.htm><BGSOUND = =3D balance=3D3D0=3D20 loop=3D3Dinfinite src=3D3D"always.mid" volume=3D3D-600> <META content=3D3D'"MSHTML 4.71.1712.3"' name=3D3DGENERATOR> </HEAD> <BODY background=3D3Dcid:001501bd7eab$75297300$c9482399@default =3D bgColor=3D3D#000000=3D20 bgProperties=3D3Dfixed> <DIV> </DIV> <DIV><FONT face=3D3DArial size=3D3D2><B>-----Original =3D Message-----</B><BR><B>From:=3D20 </B>Bruce K. Fox <<A=3D20 href=3D3D"mailto:lyndashepard@email.msn.com">lyndashepard@email.msn.com</= A>=3D ><BR><B>To:=3D20 </B>kristen dunn <<A=3D20 href=3D3D"mailto:punchycat@email.msn.com">punchycat@email.msn.com</A>>= <B=3D R><B>Date:=3D20 </B>Wednesday, May 13, 1998 2:56 PM<BR><B>Subject: </B>The =3D Present_____PI CAFE'=3D20 05-07-98<BR><BR></DIV></FONT> <DIV> </DIV> <P align=3D3Dcenter><FONT color=3D3D#ffff00 face=3D3D"Comic Sans =3D MS"><SMALL><BR>THE=3D20 PRESENT<BR><BR>Imagine there is a bank that </SMALL><BR><SMALL>credits = =3D your=3D20 account each morning with $86,400.<BR>It carries over no balance from =3D day to=3D20 day.<BR>Every evening it deletes whatever part of the balance<BR>you =3D failed to=3D20 use during the day.<BR>What would you do?<BR>Draw out every cent, of=3D20 course!<BR>Each of us has such a bank.<BR>It's name is =3D TIME.<BR><BR>Every=3D20 morning, it credits you with 86,400 seconds.<BR>Every night it writes =3D off, as=3D20 lost whatever of this you<BR>have failed to invest to good =3D purpose.<BR>It=3D20 carries over no balance.<BR>It allows no overdraft.<BR>Each day it opens = =3D a new=3D20 account for your.<BR>Each night it burns the day's deposits; the loss is = =3D
yours.<BR><BR>There is no going back.<BR>There is no drawing against the = =3D
"tomorrow."<BR>You must live in the present on today's=3D20 deposits.<BR>Invest it so as to get from it the utmost in health, =3D happiness, and=3D20 success!<BR>The clock is running.<BR>Make the most of today.<BR><BR>To = =3D realize=3D20 the value of ONE YEAR, </SMALL><BR><SMALL>ask a student who failed a=3D20 grade.</SMALL><BR><SMALL><BR>To realize the value of ONE=3D20 MONTH,</SMALL><BR><SMALL>ask a mother who gave birth to a =3D pre-mature=3D20 baby.</SMALL><BR><SMALL><BR>To realize the value of ONE WEEK,=3D20 </SMALL><BR><SMALL>ask the editior of a weekly=3D20 newspaper.</SMALL><BR><SMALL><BR>To realize the the value of ONE=3D20 DAY,</SMALL><BR><SMALL>ask a daily wage laborer with kids to=3D20 feed.</SMALL><BR><SMALL><BR>To realize the value of ONE HOUR,=3D20 </SMALL><BR><SMALL>ask the lovers who are waiting to =3D20 meet.</SMALL><BR><SMALL><BR>To realize the value of ONE MINUTE,=3D20 a</SMALL><BR><SMALL>sk the man who missed his =3D train.</SMALL><BR><SMALL><BR>To=3D20 realize the value of ONE SECOND, </SMALL><BR><SMALL>ask the person who=3D= 20 just avoid an accident.</SMALL><BR><SMALL><BR>To realize the value = =3D of ONE=3D20 MILLISECOND, </SMALL><BR><SMALL>ask the person who won a silver =3D medal in=3D20 the Olympics.<BR><BR>Treasure every moment that you have!<BR>And =3D treasure it=3D20 more because you've shared it with someone =3D <BR>special--special<BR>enough to=3D20 share your time.<BR>And remember that time waits for no =3D one.<BR><BR>Yesterday is=3D20 history.<BR>Tomorrow is a mystery.<BR>Today is a =3D gift.<BR><U><STRONG>That's why=3D20 it's called, "the present."</STRONG></U></SMALL></FONT></P> <P align=3D3Dcenter> </P> <HR>
<DIV align=3D3Dcenter> <CENTER> <TABLE border=3D3D3> <TBODY> <TR> <TD> <DIV align=3D3Dcenter> <CENTER> <TABLE border=3D3D3> <TBODY> <TR> <TD> <P align=3D3Dcenter><FONT color=3D3D#ffffff>This = =3D Page<BR><IMG=3D20 align=3D3DabsMiddle height=3D3D32=3D20 =3D src=3D3D"cid:000f01bd7eab$74f71860$c9482399@default"=3D20 width=3D3D32><BR>Has=3D20 =3D Music</FONT></P></TD></TR></TBODY></TABLE></CENTER></DIV></TD> <TD> <TABLE border=3D3D2> <TBODY> <TR> <TD><STRONG><FONT color=3D3D#ffffff><U> <P align=3D3Dcenter></U></FONT><A=3D20 =3D href=3D3D"members.tripod.com/bin/premium_guestbook?member_name=3D3Ddr5000= "><F=3D ONT=3D20 color=3D3D#008000 face=3D3D"Courier New">Please S= ign =3D <IMG=3D20 align=3D3DabsMiddle border=3D3D0 height=3D3D32=3D= 20 =3D src=3D3D"cid:001101bd7eab$7507e140$c9482399@default"=3D20 width=3D3D32> =3D </STRONG>Guestbook</FONT></A></P></TD></TR> <TR> <TD> <P align=3D3Dcenter><FONT =3D color=3D3D#ffffff><STRONG>If You have=3D20 a special Friend that you would <BR>Like to =3D remember in=3D20 a special way....<BR><U>PASS THIS=3D20 =3D ON</U></STRONG></FONT></P></TD></TR></TBODY></TABLE></TD> <TD> <P align=3D3Dcenter><FONT color=3D3D#ffffff>You were =3D Special<BR>Friend=3D20 Number</FONT><BR><!-- BEGIN LE FASTCOUNTER CODE --><A=3D20 =3D href=3D3D"http://member.linkexchange.com/cgi-bin/fc/fastcounter-login?142= 38=3D 7"=3D20 target=3D3D_top><IMG border=3D3D0=3D20 src=3D3D"cid:001301bd7eab$75110900$c9482399@default"></A><!--= =3D END LE FASTCOUNTER CODE -->=3D20 <BR><!-- BEGIN LE FASTCOUNTER LINK --><FONT face=3D3Darial = =3D size=3D3D1><A=3D20 href=3D3D"http://www.fastcounter.com/fc-join" target=3D3D_top= >LE =3D
FastCounter</A></FONT><BR><!-- END LE FASTCOUNTER LINK =3D --></P> <P align=3D3Dcenter><EMBED align=3D3Dcenter height=3D3D35 =3D src=3D3Dalways.mid=3D20 type=3D3Daudio/x-midi width=3D3D128 Autostart =3D3D True Loop= =3D3D=3D20 20></P></TD></TR></TBODY></TABLE></CENTER></DIV> <P align=3D3Dcenter><!--webbot bot=3D3D"ImageMap" =3D startspan=3D0Drectangle=3D3D"(498,29) (568, 83) =3D http://members.tripod.com/~dr5000/humorweek/index.htm"=3D0Drectangle=3D3D= "(21=3D 7,28) (294, 85) =3D http://members.tripod.com/~dr5000/seasonal.htm"=3D0Drectangle=3D3D"(128,2= 8) =3D (206, 87) =3D http://members.tripod.com/~dr5000/waterrooms.htm"=3D0Drectangle=3D3D"(298= ,38)=3D (493, 75) =3D http://members.tripod.com/~dr5000/index.htm"=3D0Drectangle=3D3D"(5,27) (3= 9, =3D 88) http://members.tripod.com/~dr5000/index.htm"=3D0Drectangle=3D3D"(42,= 29) =3D (119, 87) =3D http://members.tripod.com/~dr5000/chatrooms.htm"=3D0Dsrc=3D3D"../menubits= /PI_=3D controler3.JPG" alt=3D3D"PI_controler3.JPG (31354 bytes)" =3D border=3D3D"0"=3D0Dwidth=3D3D"583" height=3D3D"110" --><MAP =3D name=3D3DFrontPageMap0><AREA=3D20 coords=3D3D498,29,568,83=3D20 href=3D3D"http://members.tripod.com/~dr5000/humorweek/index.htm"=3D20 shape=3D3DRECT><AREA coords=3D3D217,28,294,85=3D20 href=3D3D"http://members.tripod.com/~dr5000/seasonal.htm" =3D shape=3D3DRECT><AREA=3D20 coords=3D3D128,28,206,87 =3D href=3D3D"http://members.tripod.com/~dr5000/waterrooms.htm"=3D20 shape=3D3DRECT><AREA coords=3D3D298,38,493,75=3D20 href=3D3D"http://members.tripod.com/~dr5000/index.htm" =3D shape=3D3DRECT><AREA=3D20 coords=3D3D5,27,39,88 =3D href=3D3D"http://members.tripod.com/~dr5000/index.htm"=3D20 shape=3D3DRECT><AREA coords=3D3D42,29,119,87=3D20 href=3D3D"http://members.tripod.com/~dr5000/chatrooms.htm" =3D shape=3D3DRECT></MAP><IMG=3D20 alt=3D3D"PI_controler3.JPG (31354 bytes)" border=3D3D0 height=3D3D110=3D2= 0 src=3D3D"file:///C:/New%20TRIPOD5000/menubits/PI_controler3.JPG"=3D20 useMap=3D3D#FrontPageMap0 width=3D3D583><!--webbot bot=3D3D"ImageMap" =3D i-checksum=3D3D"34761" endspan --></P> <P align=3D3Dcenter><EM><SMALL><FONT color=3D3D#ffffff>PI Cafe'=3D20 05-07-98</FONT></SMALL></EM></P></BODY></HTML>
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--part0_895093915_boundary-- ========================================================================= Date: Wed, 13 May 1998 17:21:53 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Thornq <Thornq@AOL.COM> Subject: Pictures Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Hello again!
I received two more pictures today, Morgan and ViVi. What two beautiful little girls they are. I love Morgan's dress, she looks just like a little princess. ViVi looks wonderful after her surgeries. I was unaware that ViVi's surgeries were done at Children's Hospital in Boston. That is where all of Andrew's surgeries have been. I'm assuming you use Dr. Mulliken and his team for the skull. Who is your neurosurgeon and hand surgeon? Do you use Dr. Upton as well? Please let me know, I'm really curious. I'm also glad that Dr. Mulliken could point the neonatal doctors in the right direction for Morgan. Who is doing your surgeries? Morgan has type 1 hands doesn't she? Because they don't looke that bad. Her hands look just like Andrew's when he was born.
It's funny, we can all seem to see a resemblance between our own kids and everyone elses. There is at least one thing that looks familiar.
This is so much fun. There was one day where the number of pictures received out weighed the number of bills. That was exciting!!!!!
Talk to all of you later. Have a great day and night.
Lynn ========================================================================= Date: Wed, 13 May 1998 19:18:05 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: APERT Digest - 11 May 1998 to 12 May 1998 (#1998-78) Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Hey all, I realize this is a slow response, thus is the price to be paid with digest mode.....however, I wanted to throw in a bit about the sensitivity in the hands that Jasmyn shared. She says that the whole feeling is foreign, and the greatest part of that is the division of fingers (or toes!). I guess it would be similar for us to have one of our fingers cut in half, to add a sixth digit. Jazz says that it feels "like a piece of your hand is broken off, and you want to tape it back together". Eventually, they adjust and learn to manipulate, but it does take a long time for some of the nerve ends to come alive and muscles to react.
And for my two cents.....I remember Jasmyn wanting those socks on for a long time too! One of the things that helped was frequent baths. The sensation of water seemed to encourage the adjustment. I go back in time when I hear the familiar things your going through. Hope this gives some more insight.
Patti ========================================================================= Date: Wed, 13 May 1998 18:24:32 -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: Pictures/Thanks MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
We received Sarah LeCara and Quentin's pictures. Sarah is so cutie... and seems to like Nana a lot... Quentin looks wonderful!!! What a handsome little boy. Thank you so much for the pictures.
Best wishes to all, The Ize's. ========================================================================= Date: Wed, 13 May 1998 20:00:10 -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: ROBIN L HILL <CARMENRAE@PRODIGY.NET> Subject: Welcome!!!! MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit
We just wanted to welcome all the new families that have joined the listserver in the past couple of weeks. We are Mike and Robin Hill from Newnan, Georgia (30 miles southwest of Atlanta). We have a precious baby girl named Carmen Rae who was born on January 18, 1998 with Apert Syndrome. She has currently only had one surgery (shunt placement) and is scheduled for her first cranial surgery on June 12.
We are real sorry that we didn't send a separate message to each of you, but we have kinda been out of sorts lately with the EMAIL. Boy, we had 600 or more at one point. Anyway, just wanted to welcome all of you and let you know this is a WONDERFUL family!
Mike, Robin, and Carmen Rae Hill CARMENRAE@PRODIGY.NET ========================================================================= Date: Wed, 13 May 1998 19:29:58 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: ize <ize@TACOMA.CEATLABS.OKSTATE.EDU> Subject: ACORDA!!!!! MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
((((((Heeeeei))))), conta as novidades, o que mais estao aprontando???? Tenta pegar uma foto de sua mae e faz a mudanca, imprime e manda pra ela so por sarro.... Isso e se voce ainda nao contou a ela sobre o programa. Ja fez a mudanca definitiva??? Estou aguardando noticias...
Tchau, Claudia. ========================================================================= Date: Wed, 13 May 1998 19:49:49 -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: ize <ize@TACOMA.CEATLABS.OKSTATE.EDU> Subject: I am sorry MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
I am so sorry about the e-mail that you received. I was just sending it to a friend and I sent it to the listserv.
We were talking in Portuguese, my native language. You may not understand...
Sorry again, Claudia Ize. ========================================================================= Date: Wed, 13 May 1998 21:39:37 -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: Jack and Raquel <jara1@BELLSOUTH.NET> Subject: Pictures MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Hello everyone....
Well we received Jacob Bailey's picture today....what a handsome little boy. Can't wait to receive more and more.
Oh, and yes the little boy wearing the "Jeanswear" shirt is Quentin Zaengle, cutie huh??
Signing off...just wanted to let everyone know who's picture we received today....
Raquel Miller.....STILL HOT!!! ========================================================================= Date: Wed, 13 May 1998 21:42:02 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: Yonstein <Yonstein@AOL.COM> Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Hello All:
Well, I am trying to catch up on my mail after my work days again. Boy do I miss not reading it every day.
Anyway, I wanted to wish speedy recovery to Sammy and Zoey. Hope they are feeling better.
Happy Birthday goes out to Brenna on the 14th. Enjoy your day.
Glad to hear that Nicole's appt. with the neurosurgeon is ok and she's doing fine.
I know that there are a lot of us whose kids are scheduled for surgery next week (Emily on the 22nd.) If you guys are feeling anything like I am, just know that I am thinking of you also and we just need to keep taking deep breaths. That's what I keep telling myself. Of course, Emily now has an extremely runny nose and I am hoping it's teething and not a cold starting.
Hoping that all is well with everyone. Would love to hear from the Harmons on how BJ is doing.
Have a good night. Janine Krebs (It finally stopped raining in New York!!!!!) ========================================================================= Date: Wed, 13 May 1998 23:07:29 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: ChMathis <ChMathis@AOL.COM> Subject: Re: Pictures Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
I received little Jacob's pictures today. What a doll! I would have never had guessed that he had Apert Syndrome by looking at his head, you can only tell by his hands, and his hands look almost exactly like my Zoey's. He's older than Zoey, so I can only hope Zoey looks that good at 23 months! Watch out when he gets older, the girls are going to love him! Christina, Zoey and Tia Mathis From the still dry and rain not even in the forecast, San Antonio, TX ========================================================================= Date: Wed, 13 May 1998 23:10:34 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: Welcome!!!! Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
I have not received a picture of Carmen Rae, and was wondering if maybe I didn't get on the Exchange in time to get one. If you have any left, can Zoey have one for her little scrapbook? Thanks, we're at 7735 Branston, San Antonio, TX 78250. Christina, Zoey and Tia Mathis ========================================================================= Date: Wed, 13 May 1998 23:13:38 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: ChMathis <ChMathis@AOL.COM> Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Well, I hope you sent the rain down here to San Antonio, cause we need it or we're going to dehydrate! (SMILE)
Zoey should be home tomorrow (for real this time). Goodnight all! Christina ========================================================================= Date: Thu, 14 May 1998 07:25:20 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: Jenngram <Jenngram@AOL.COM> Subject: Re: Pictures Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Ohhhh, that Morgan is a cutie..and I LOVE the pillows on the couch!!!!!!! :) :)
The rest of Jordan pictures should go out next week ...I'll be doing the envelopes Mon. as he is in surgery..It'll keep me busy w/ happy thoughts!!! today is pre-op work up..Always a thrill !!!
Jenn (Tampa/St. Pete) ========================================================================= Date: Thu, 14 May 1998 08:27:33 -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: Sarah LeCara MIME-Version: 1.0 Content-Type: text/plain; charset="us-ascii" Content-Transfer-Encoding: 8bit
Sarah's first cranial surgery was cancelled. She developed pneumonia again on the 5th of May and has been in the hospital ever since. We are told she will be able to come home by the weekend!! She is such a trooper. She entertains all the nurses and is so NOSEY!! She doesn't miss a thing. Quiet a social girl.
Christina, I saw pictures of the haze in San Antonio this am. It is bad in Houston and Weimar TOO. It has really affected my breathing, think what it has done to Zoey and Sarah!! Pray for a cold front or rain!!
Brenda, Thanks for the info on Dr. Slayer. Tamara and I are going to Dallas the 21st for a consultation. Love to all, Jennie Muggli ========================================================================= Date: Thu, 14 May 1998 09:37:23 -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: Welcome!!!! MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit
Carmen Rae ran out of pictures, but she has gotten re-prints!!!!! She will be sending out 21 more in the next day or so. Zoey is definitely on the list!!!!! Robin Hill
---------- > From: ChMathis <ChMathis@AOL.COM> > To: APERT@LISTSERV.AOL.COM > Subject: Re: Welcome!!!! > Date: Wednesday, May 13, 1998 11:10 PM > > I have not received a picture of Carmen Rae, and was wondering if maybe I > didn't get on the Exchange in time to get one. If you have any left, can Zoey > have one for her little scrapbook? Thanks, we're at 7735 Branston, San > Antonio, TX 78250. > Christina, Zoey and Tia Mathis ========================================================================= Date: Thu, 14 May 1998 09:40:28 -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: Sarah LeCara MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit
Sorry to hear about Sarah getting ill. I am beginning to wonder if this time of year is not good for surgeries. Of course my anxiety level is peaking as Carmen Rae's surgery approaches on June 12. I am praying for good health!!! We'll be praying for a quick recovery for little Sarah.
Robin Hill
---------- > From: JMuggli <jmuggli@CVTV.NET> > To: APERT@LISTSERV.AOL.COM > Subject: Sarah LeCara > Date: Thursday, May 14, 1998 9:27 AM > > Sarah's first cranial surgery was cancelled. She developed pneumonia again on the 5th of May and has been in the hospital ever since. We are told she will be able to come home by the weekend!! She is such a trooper. She entertains all the nurses and is so NOSEY!! She doesn't miss a thing. Quiet a social girl. > > Christina, I saw pictures of the haze in San Antonio this am. It is bad in Houston and Weimar TOO. It has really affected my breathing, think what it has done to Zoey and Sarah!! > Pray for a cold front or rain!! > > Brenda, Thanks for the info on Dr. Slayer. Tamara and I are going to Dallas the 21st for a consultation. > Love to all, > Jennie Muggli ========================================================================= Date: Thu, 14 May 1998 10:29:44 -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: Qing Gong <qing@ASRC.CESTM.ALBANY.EDU> Subject: Re: Pictures MIME-Version: 1.0 Content-Type: text/plain; charset="us-ascii" Content-Transfer-Encoding: 7bit
Hi, Lynn, Yes we go to Children's in Boston. We see Dr. Mulliken for craniofacial and Dr. Hurgrueter for hands. We love them both.
Qing ________________________________________________________________________
I received two more pictures today, Morgan and ViVi. What two beautiful little girls they are. I love Morgan's dress, she looks just like a little princess. ViVi looks wonderful after her surgeries. I was unaware that ViVi's surgeries were done at Children's Hospital in Boston. That is where all of Andrew's surgeries have been. I'm assuming you use Dr. Mulliken and his team for the skull. Who is your neurosurgeon and hand surgeon? Do you use Dr. Upton as well? Please let me know, I'm really curious. I'm also glad that Dr. Mulliken could point the neonatal doctors in the right direction for Morgan. Who is doing your surgeries? Morgan has type 1 hands doesn't she? Because they don't looke that bad. Her hands look just like Andrew's when he was born. ========================================================================= Date: Thu, 14 May 1998 12:08:04 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: Yonstein <Yonstein@AOL.COM> Subject: Re: Sarah LeCara Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Sorry to hear that Sarah is back in the hospital. Wishing her a speedy recovery and that she will be home this weekend as expected.
Best wishes,
Janine Krebs ========================================================================= Date: Thu, 14 May 1998 11:47:42 -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: Sarah LeCara MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
We hope Sara gets well soon. She will be in our prayers!
The Ize's. ========================================================================= Date: Thu, 14 May 1998 11:47:46 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: ize <ize@TACOMA.CEATLABS.OKSTATE.EDU> Subject: Re: I am sorry MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
D. Jefferson wrote: > > Claudia: > > I read Spanish and was having trouble reading your email. Now I understand > why. > > Dori A. Jefferson > djeff@midwest.net
So many people think that Portuguese and Spanish are the same, but for us it is not like that. I wish I could read, understand or even talk in Spanish but I can't. I admit that there are some words that are similar but it doesn't mean anythyng... We Also have some words in Portuguese that are the same in English, but it also doesn't mean that you know English or vice/versa. Kind of complicated.... I also have a friend from Mexico, she teaches Spanish here at Oklahoma State University and when we meet, we talk in English because that is the best way to understand each other.
Yesterday we went out to take some pictures but Mr.Felipe started crying because he didin't want to leave the wagon to take a picture! hahahaha.... Today we are going to try it again but at this time we are not going to take the kids out by wagon. Cross your fingers and let's see what we'll get!!!!
Hope everybody is doing well! Claudia Ize. ========================================================================= Date: Thu, 14 May 1998 14:04:40 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: Just ramblin'! Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Hello to all,
I just wanted to wish everyone 'good luck' that is having upcoming surgeries. I really need to have a separate calendar for those things. My current one is getting really full from all personal things and Andrew's doctors app. I was thinking (and trust me it hurt) I sit here and wonder when everyone's birthdays are. Could we (now I know this is alot....with the picture exchange and all) maybe post birthdays for all our cuties? What do you think? Because I am pretty good and love sending cards to people. Sometimes I just send them because I feel like it. Plus, I'm getting good at cards on the computer. Andrew's birthday is September 5. I am marking down that Brenna's birthday is coming up on May 22. Is this correct? Well let me know what you all think (I sound like a southerner).
Like everyone else on the listserv, I get really excited about going to the mailbox everyday. But it looks like we might be moving in the next 6-8 weeks, so I will have to post our new address. People can mail the pictures to my new address a week before I move, because it is my sister's house, and she is moving to Maine. So she won't mind. I will let you all know when it is to happen.
I want to thank everyone on the listserv for all the questions you have answered and all the advice given. This place is truly a wonder and a saving grace. I only wish I had a computer when Andrew was born. I wanted to sign on with my sister-in-laws computer, but that would have been a pain. I think that my stress level is much lower and i feel at ease in making decisions for Andrew because I have so much support. All of you have been like an extended family and I love talking to everyone. I get so excited about getting my e- mail everyday. Hats off to Don for coming up with this listserv. Mentally I don't think all of us would survive without it. It is a place to ask questions, a place to just ramble about life, a place to shed tears and not be judged, and a place to share our inner most feelings. I am so glad to be a part of it.
Well that is enough mushy stuff. I just wanted to thank you all for everything that you have done and given me. THANK YOU!!!!!
Thank for listening.
Lynn Thornquist ========================================================================= Date: Thu, 14 May 1998 15:05:07 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Carbide Tech <ruth@CARBIDETECH.COM> Subject: Question for someone! MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit
Hi guys, I hope everyone is doing ok today, with the week-end coming up and all, I am so ready for this week-end!
I am so sorry to say that recently someone e-mailed me saying that they would be at TCH the same day that Kris was (6/4) and could we meet, and I'm so sorry to say I lost it! Jonathan's parents? Or Sara's Nana? Please let me know and we will make arrangements. So far so good, Kris has gotten rid of her cold/sinus infection/allergies. Whatever it was! She is doing good, lets pray she stays that way.
Sorry to hear Sara is back in, hope to see you soon. I got your pictures (wonderful). This kids are just too cute! Kris is so undecided on which picture she wants to send. Everyday she changes her mind! Just like a woman for you! She has so many that she just can't quite decide. The other day she had this wonderful idea. She wanted to go to "Glamour Shots" with a friend of hers, I think it would be cute and we might very well do that, but those pictures are just so expensive! Not to mention- School! they take pictures at least 3 times a year! We will keep you posted.
It's nice to read your questions and comments, been there, done that. But I would like to know where MRS.SHERRY BELSLEY IS AT? She's got this little bundle of joy, gorgeous little stinker named Kimberly. She is not only a cutie-pie she is a SMART little CUTIE PIE! Kimberly is 3 years old (4?) and already she can spell her name and do lots of things that just amaze us! Kimberly has a little brother named, Edward, who is just as smart. Will the real SHERRY BELSLEY, PLEASE STAND UP? I know that Sherry will get me for this, but she is also an Apert parent that has a computer for a head and she knows alot and could probably tell everyone of us where everyone else is at and what type of surgery they are going to have, etc. etc. Now we know where Kimberly gets her smarts from, huh?
Talk to you later!
Ruth Contreras In smoke infested Houston! ========================================================================= Date: Thu, 14 May 1998 17:32:13 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: ChMathis <ChMathis@AOL.COM> Subject: Re: Sarah LeCara Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Sorry to hear about Sarah in the hospital. Zoey is a nosy little girl, also, but she's so sick of the hospital, she absolutely drives her nurses crazy. She'll cry alot, especially if I'm there and busy taking care of business (going to the bathroom, or getting her ready to go home). When I'm not there, however, she seems to be a little charmer, and even though she can be a challenge, the nurses love her. I know when we're in the ER and the doctors want to admit her and they call upstairs to the PICU, the nurses are like...."NO!" LOL Zoey came home today with a home health nurse, and she's still mad because I'm not holding her 24/7. Gotta love her! Hopefully, ya'll be out this weekend. This weather is AWEFUL, and Zoey is quarenteened to the house. (Smile) Christina (Zoey and Tia) Mathis Dry San Antonio ========================================================================= Date: Thu, 14 May 1998 17:35:49 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: ChMathis <ChMathis@AOL.COM> Subject: Re: Pictures Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
If anyone has an address that I can send Dr. Upton a letter about Zoey, I'd appreciate it. The reason I'm asking is b/c I don't want her current Ortho surgeons operating on her again, until I've got the second opinion of an expert. I just think that there's more that can be done. I look at all these pictures, and everyone's hands look great. I want the best for Zoey. And if there are any other doctor's that I could send Zoey's info to, I'd be pleased to have them also. Thank you Christina (Zoey and Tia) Mathis Dry and Hazy San Antonio ========================================================================= Date: Thu, 14 May 1998 16:40:13 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: ize <ize@TACOMA.CEATLABS.OKSTATE.EDU> Subject: Picture/Thanks MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Today we received Vivi's, Jacob's, and Morgan's pictures. Vivi is a beautiful girl! Jacob is soooo cutie, his hands look like Felipe's hands before his surgeries. Morgan is such a doll! Thank you so much for the pictures.
God bless you all! The Ize's ========================================================================= Date: Thu, 14 May 1998 17:43:26 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: ChMathis <ChMathis@AOL.COM> Subject: Re: Just ramblin'! Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Zoey's birthday is Jan 18, and I too, like sending out cards. Where in Maine is your sister moving to, Lynn? My mother is from Lewiston, Maine, and we lived in Auburn for 6 years. We also lived in the Oxford/Norway/South Paris part of Maine for several years. It's a wonderful place to visit, and I when thinking about places to settle down at, Maine sometimes comes to mind. Christina (Zoey and Tia) Mathis Dry, humid, hazy San Antonio (pray for rain, ya'll!) ========================================================================= Date: Thu, 14 May 1998 17:52:12 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: Picture/Thanks Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Hi, Christina here. I received Morgan's picture just today. What a doll! She's so calm. If I sent anyone pictures of Zoey at 5 months old, she'd be screaming! LOL I hear people getting pictures of beautiful Vivi, I hope to get one soon. Bye ya'll Christina Mathis San Antonio ========================================================================= Date: Thu, 14 May 1998 17:56:19 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: Pictures Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Goodluck on Jordan's surgery. We'll be praying for a successful one. Call me retarded, but I can't remember what surgery this was for. Zoey's HOME!!!! AND we got what zoey's always needed: more nursing. It took time, patince, and dealing with all of the frustration, but praise the Lord, we have the nursing that Zoey needs! Christina (Zoey and Tia) Mathis Dry Southern Texas ========================================================================= Date: Thu, 14 May 1998 18:23:10 -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: Jack and Raquel <jara1@BELLSOUTH.NET> Subject: Pictures/Jordans Surgery MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Hi all...
Well today we received Morgan and Nicks pictures. Lisa, Morgans hands are exactly like our Nicole's she is adorable and Judy Nick looks great how many surgeries has he had, has he had his mid-face advancement yet?
Jenn, Good luck with Jordans surgery I'm thinking about you I know its coming up soon....Stay focused....
Talk to you all later...
Raquel..... ========================================================================= Date: Thu, 14 May 1998 18:17:27 -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: Judy Amerman <jamerman@UTI.COM> Subject: Re: Pictures/Jordans Surgery MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit
Rachel, To date Nick has had 12 or 13 surgeries. The first at 4 months for a shunt. The second at 5 months for the cranial release and forehead advancement. Two eye surgeries and eight or nine hand surgeries. He will have his midface done several years from now. The next step with Nick is expansions for his teeth. After his teeth get done, the midface will come. He had rosebud hands. And the fingernails were a fright. I was so afraid of the fingernails that I used to take him to the doc's to get them cut. You sure got his picture fast. They were mailed out Tuesday at around 4 p.m. Hope alot of others got there that fast. Judy
---------- > From: Jack and Raquel <jara1@BELLSOUTH.NET> > To: APERT@LISTSERV.AOL.COM > Subject: Pictures/Jordans Surgery > Date: Thursday, May 14, 1998 5:23 PM > > Hi all... > > Well today we received Morgan and Nicks pictures. Lisa, Morgans hands > are exactly like our Nicole's she is adorable and Judy Nick looks great > how many surgeries has he had, has he had his mid-face advancement yet? > > Jenn, Good luck with Jordans surgery I'm thinking about you I know its > coming up soon....Stay focused.... > > Talk to you all later... > > Raquel..... ========================================================================= Date: Thu, 14 May 1998 16:26:49 -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: Just ramblin'! Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
>I am marking down that Brenna's birthday is >coming up on May 22. Is this correct? Well let me know what you all think (I >sound like a southerner).
Hi Lynn, actually the little Plum's B day is today! Yipee! We aren't going to really celebrate until Saturday though. It would be fun if there would be a way to make a list of everyone who was interested's B day. I have a hard time remembering exact dates too. I am going to have to take up Resa's idea one of these days and make a spreadsheet. Once we move into our new house, I am going to dedicate a section of our office wall to our online friends. I hope to put up a map that marks where people live - I can't remember who suggested that. And hopefully the pictures we have been receiving and any other info. we get too.
About the mushy stuff you wrote - Ditto! Me too! I don't know what I would do without our online friends. I have definately gone down a few notches in my stress level. This is a real blessing.
Hugs, Robyn ========================================================================= Date: Thu, 14 May 1998 19:38:55 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: Pictures Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Glad to hear that Zoey's home and doin' well. We here in Tampa are batteling the haze as well. I went fo a jog and thought it was foggy?????? At 4 pm !!!!!!!!!! So I can imagine the breathing situations which could arise. I know the MICU here at All Childrens is full of difficult breathers this week!!!! GREAT!!!!!!!
Anyho.....glad ya'll made it home...with help!!!!!!!
Jenn (Tampa/St. Pete....... nearly 75 days w/ no measurable rainfall..) ========================================================================= Date: Thu, 14 May 1998 21:20:45 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: Yonstein <Yonstein@AOL.COM> Subject: Re: Just ramblin'! Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Hello to all:
Glad to hear Zoey is home and feeling ok.
As far as rambling on about this list, I, too, don't know what I would have done this past year since Em has been born without the listserv. It's been my salvation. I, too, owe it to you guys who have helped me through the toughest time.
If I let myself I could get real mushy, Lynn, but I will spare all of you that.
Anyway, I like the b-day idea. Emily's is July 26th. She will be one this year.
Hope all is well with everyone. We had our pre-op with the plastic surgeon today for the palate and we have the hospital pre-op bright and early tomorrow morning. Then next week it's off to the eye doctor and the pediatrician for Friday's surgery.
Have a good night.
Janine Krebs (The sun finally came out in NY) ========================================================================= Date: Thu, 14 May 1998 21:26:12 +0000 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "J. G. Lindamood" <chanan8@JUNO.COM>
Hello,
I have a smashing headache, telling you this to excuse my brief note. I received a handful of photos today, including Amy's. Thank you very much. She is a cutie! I love the fish photo! it was also nice to see dad without the beard.. the photos on the net are with the beard.
I better lay down.
Joanne ========================================================================= Date: Thu, 14 May 1998 20:19:23 -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 all, This picture exchange is so much fun. I got two new ones today. I got Amy from New Zealand and by the way Ann, thanks for doing what I didn't, It was nice to see you and howard too. I also got a cute little girl named Vivi. So far I have 13.And I still have 34 coming. YEAH! I think we are finally getting some of the Florida weather here. It got up to 86 here. My husband thinks this weather is just right.He goes back to India soon and it gets in the 120's there. Thank God for Air conditioning Judy ========================================================================= Date: Thu, 14 May 1998 21:01:28 -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: pictures MIME-version: 1.0 Content-type: text/plain; charset="us-ascii"
today I received Sara Lacara, Vivi, jacob, and Morgan's pictures today. Sara looks a lot like a little girl I know who has Phieffer's syndrome. Sadie is her name. I hope her health is getting better! I just want to thank everyone for the pictures. This is so much fun. God Bless!
Lynn, Thanks for the poems. It is always nice to have reminders of how precious time is, when you are feeling stressed out!
` Denise Graham ========================================================================= Date: Thu, 14 May 1998 23:13:22 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: Dr. Upton request Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Christina,
Here is Dr. Upton's address and phone number. Please let me know if I can be of anymore assistance. My son Andrew has had the pleasure of his expert hands. Andrew has had two hand surgeries and is going to have his fingers thinned down when he is three years old. I know you will be pleased with Dr. Upton. He is a wonderful man.
Dr. Joseph Upton 830 Boylston Street Suite 212 Chestnut Hill, MA 02167 Phone # 617-739-1972
You can fax your letter to him directly if you want (to his office), but unfortunately I have lost it. Let me know what happens.
Lynn Thornquist Thornq @aol.com ========================================================================= Date: Thu, 14 May 1998 23:18:01 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: Pictures Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Christina,
I'm sorry, but I did not remember that you wanted other information regarding doctors in this area. Let me give you some more suggestions. They are all at Children's Hospital in Boston.
Dr. John Mulliken (Head of Craniofacial Program and Team) Children's Hospital 300 Longwood Avenue Boston, MA 02115 (617) 355-7686
Dr. Michael Scott (Neurosurgeon) Children's Hospital 300 Longwood Avenue Boston, MA 02115 (you can get his # from Dr. Mulliken's secretary)
Dr. Roger Nuss (Otolaryngologist) Department of Otolaryngology Children's Hospital 300 Longwood Avenue Boston, MA 02115 (617) 355-6460
Again, please let me know if I can do anything. Feel free to e-mail me directly.
Lynn Thornquist Thornq@aol.com