========================================================================= Date: Sun, 15 Mar 1998 13:08:09 -0300 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Gabriel Dantur <gdantur@IMPSAT1.COM.AR> Subject: Hands and toe surgery MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit
Hi and thanks to everybody fron the Dantur family. Getting all those warm welcome and support messages from the group had been very helpful for us. After the storm we are starting to put the pieces back together. Yesyerday Catalina had her first social event, we took her to a wedding and she enjoyed very much.
In these days I've been researching a lot on skull surgery. Regarding hand and toe i have no information at all. Can someone give me some orientation about timings ?
Thanks a lot.
PD: i have some pics of Catalina, and would like to share them with you, what's the usual procedure for this (I don't want to overload people's mail with heavy graphic files). ========================================================================= Date: Mon, 16 Mar 1998 08:52:55 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jenngram <Jenngram@AOL.COM> Subject: Re: Hands and toe surgery Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
I know Jordan will have his first finger realeas in April..about 6-9 weeks after his first cranial. Enough time for the work on his orbits and skull to heal so he can wear a face mask, for oxygen, during the procedure. The remaining surgeries will continue about every 4-6 weeks..as long as he heals as well as he did from his cranial surgery.There has been some talk about releasing his big toe w/ one of his hand surgeries, but he stands so well as is, I hate to mess w/ a good thing..If it ain't broke, don't fix it!!!!!
Jenn(Tampa/St. Pete) ========================================================================= Date: Mon, 16 Mar 1998 09:31:26 PST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jason Burdette <jlburdett@HOTMAIL.COM> Subject: Hi Content-Type: text/plain
My name is Jason burdett
I have Aperts and thank you for the letter. I am 15 years old and I am glad that people like you are righting to me. People that have Aperts right to me and right back soon.
Jason leroy burdett
______________________________________________________ Get Your Private, Free Email at http://www.hotmail.com ========================================================================= Date: Mon, 16 Mar 1998 12:59:40 -0600 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Bob Horning <Bob.Horning@CORP.HONEYWELL.COM> Subject: Re: Stupid remarks Comments: To: "Howard & Ann (IPM Return requested)" <howrdnan@IHUG.CO.NZ>
>>P.S. Here's another one for the books. A friend of ours was about to bring >>her son in for surgery on his brain (for something else, not Aperts). >>Somebody said to her, "I know how you feel. My kid had ear tubes put in last >>year." > >>Duh.
>Now come on Bob, everyone knows the ears are connected to the brain!
>Ann >NZ
Actually, I was mistaken. How stupid of me. I told my wife that I had passed the story along and she said it was worse than that. The other kid wasn't getting ear tubes. He was just on medication for an ear infection. ========================================================================= Date: Mon, 16 Mar 1998 17:07:48 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Thornq <Thornq@AOL.COM> Subject: Re: New addition to the Bailey family Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
CONGRATULATIONS TO THE BAILEY FAMILY!!!!!!
My husband and I have contemplated having another child after Andrew, and were worried about another Apert child. You have given me new hope. Of course I would never mind having another child like Andrew, but I couldn't bear putting another one of my babies through all the surgeries Andrew has had to endure. I'm sure Jordan is a wonderfully beautiful little girl.
Make sure you send Don that picture, I would love to see her.
Lynn Thornquist ========================================================================= Date: Mon, 16 Mar 1998 17:16:03 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Thornq <Thornq@AOL.COM> Subject: Re: Intro Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Brenda,
Andrew had three surgeries pretty close together. June of 1997 was his frontal advancement and then in early August was his second hand release, and finally in November they removed the plates from his June surgery. Everyone told me that six weeks was enough time to allow for his body to recover. I don't think that his mind recovered all that well though. But it was nice to get them over with.
Good luck with everything and I will be mailing out your copy of the book by Wednesday at the latest. We have been without a compuer for awhile and I recently had knee surgery and am trying to get back into the swing of things. But you will definately have the copy before your upcoming surgery. Talk to you later.
Lynn Thornquist ========================================================================= Date: Mon, 16 Mar 1998 17:28:43 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Thornq <Thornq@AOL.COM> Subject: Re: Hands and toe surgery Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Gabriel,
Andrew's hand surgeries were done when he was six months and 12 months. His second hand release would have been earlier, but he needed to have his frontal advancement first. Andrew's doctor told us that he like to do the hands early because of developmental reasons. If they are separated early, the child has more opportunity to develop finger manipulation. He normally would have done Andrew's second surgery close, but he also wanted to wait for his second and third digits to grow a little bit. Your doctor should be able to tell you what is the best route for you.
As for the toes, we have decided to go ahead and have them separated, but our doctor has told us that Andrew will not have the problems that other kids have. He said that Andrew has all bones and joints in his toes. We will probably be having his feet done by the time he is four years old. He will have two casts on his feet and have to keep them elevated for about 3 weeks. But I have know others who have the big toe separated and then need to have it amputated because it separates to much from the rest of the foot. Make sure you do alot of research about the feet before you make any decisions.
I hope this helps. Good Luck!!!
Lynn Thornquist ========================================================================= Date: Mon, 16 Mar 1998 16:46:52 -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: Carrie Lynn Hobbs-McKenzie <clm@WIN.BRIGHT.NET> Subject: Hi, I'm new! :-) MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Hello, everyone. I've been lurking the past week or so, wondering if I'll "fit in" with your list/group!
But, you know what? -- I'm still not sure! LOL!
How about this... I'll introduce myself and then *you* can tell *me* whether I should stay or go! LOL! ;-)
My name is Carrie, and I'm the mother of three children, Katherine (7), Rose (5) and Gaelin (2). I'm single, going through a divorce, and have no help as far as therapies, etc... go.
Gaelin was born with severe clefting of the lip and palate. He does not have Aperts however. Still, I can really relate to a lot of the things I've seen posted (or imagine must be posted), here.
Namely: the shock of receiving an "imperfect" newborn when for nine months, you've been expecting the opposite; the stares of wondering others every single place you go (children AND adults, alike!); the "tsk, tsk" that you get from total strangers who put the blame for your child's condition soley on YOU and something YOU must have done to cause it, not to mention your own self guilt!
Oh, and of course, constant searching for WHY -- why did this have to happen? Why us? Why our baby? -- And how about the surgeries, huh? Yikes. That is definitely something I could do without! It's something I'm sure GAELIN could do without, too! (Need I go on? <vbg!>) I think this aspect has been THE worst of all...
So many people, after delivery, responded to my sadness and grieving with, "Well at least it wasn't something major like the heart..." or similar comments. They completely disregarded the fact that this was not a normal postpartum, that I would have to stand by as my child got pricked, poked and cut for the majority of his years on earth... etc...
My Gaelin has had several treatments, and two major surgeries, so far. He supposedly won't have to have any more operations for a couple of years (to allow time for more bone/facial development. The next one will be bone grafting, and this will follow treatments in which his upper jaw segments will be moved apart via an appliance... ironically tearing his brand new palate).
I don't know about your little ones, but wow, is Gaelin a toughie! He's such a wonder! I learn strength and coping skills from him, daily! He's such a gift from God!!! (as are my other two, but there *is* a subtle difference, somehow with *him*)
Gaelin's got sensory integration problems (he's slowly getting better, but it was a MAJOR trial at first!!!), and verbal apraxia (the ONLY word he's able to say, which he JUST learned last month, is "Mama" :-) You can see he's trying like mad to make certain sounds, but he just physically *can't* do it...)
We use extensive sign language with him, while simultaneously working with him in Speech Therapy, twice weekly.
Other than this, he's considered "normal" by "mainstreamers". (Although he couldn't possibly be anything but perfect to me, in my mind!!! He's no different than my other children! Just as beautiful! Just as smart! Everything!!!)
It took a while for me to reach a sense of acceptance in regard to Gaelin's appearance, etc... though...
I remember, for the better part of his first year, holding him up in the mirror (he looooved to see his reflection!), feeling immense guilt over not appreciating his unique appearance. I even thought he was ugly. <sigh> Talk about a rotton mother, huh? :-(
Looking back, the disgust I feel with myself for feeling that way is immeasurable!
But by the time his first surgery rolled around (at 8 mths of age), it was GAELIN who looked normal compared to other kids without the deformity (and I *HATE* that word!), who looked strange to me.
It was *SO* hard to hand him over to the nurse when they were ready to take him away into surgery!
I'll never forget how acute the urge to flee with him was!!! I didn't see a need for the surgery anymore! I honestly didn't!
And after his first repair, I *HATED* the way he looked! It didn't look like my Gaelin anymore! In fact, he even SOUNDED different. I wished I could have my "old baby" back, full, complete bilateral cleft lip and all!!!
My husband kept telling me how wonderful he looked, and what a terrific job the plastic/reconstructive surgeon did... and I thought he was crazy! I felt angry with him for thinking such a thing! It was almost like he was telling me that he didn't like the way Gaelin looked *before* the surgery!
Gaelin's second surgery was just this last October. He had a palate repair done, and was in the hospital for about a week.
I am a very, very shy, withdrawn person, but believe me. I've gotten to the point where I'm NOT this way in the environment of clinics and hospitals!!! -- I've had too many dealings with incompetent, harsh, condescending, patronizing medical professionals to just sit back and relax in their care. (Care. Ha. What a funny word for it.)
Anyway, hello! Sorry for the rambling introduction! I'm known for being overly-chatty! :0)
I'm hoping I'll "fit in" here, and am looking forward to meeting you all! :)
Carrie ~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*~~* WHO WE ARE! - Home Schooling, Parenting, Photos, Childhood Surgery, Depression & Mothering, WOH & SAH Moms, and MORE! ~~* Sign Our Guest Book and Visit Again! *~~ http://www.angelfire.com/oh/nursecleftbaby/hello.html ~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*~~* ========================================================================= Date: Mon, 16 Mar 1998 16:50:03 -0800 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Robyn Johnston <robyn@ORDATA.COM> Subject: Re: Hi, I'm new! :-) Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
>Hello, everyone. I've been lurking the past week or so, wondering if >I'll "fit in" with your list/group!
Carrie, I just have time for a quick note, but it sounds like this list would fulfill many of your needs. The discussions here, center around most of the topics that you have mentioned in your introduction letter. My daughter Brenna, who is almost 2, was born with Crouzons syndrome - similar to Aperts without the syndactly of the hands and feet. This list personally has helped me immensly get through the first 2 years without losing my sanity! And it has relieved a lot of my anxieties regarding raising a child with craniofacial special needs.
There is another list server also that deals mostly with Cleft palate issues. It is 'Widesmiles' and several people on this list are members of that as well. It would have more info and discussion about cleft issues. A lot of the topics do overlap though.
There are also older copies of archived information and discussions from this list that may help you.
Again welcome, hopefully you will get some of the answers you are looking for.
Robyn Johnston Eugene, OR
At 04:46 PM 3/16/98 -0600, you wrote: > >But, you know what? -- I'm still not sure! LOL! > >How about this... I'll introduce myself and then *you* can tell *me* >whether I should stay or go! LOL! ;-) > >My name is Carrie, and I'm the mother of three children, Katherine (7), >Rose (5) and Gaelin (2). I'm single, going through a divorce, and have >no help as far as therapies, etc... go. > >Gaelin was born with severe clefting of the lip and palate. He does not >have Aperts however. Still, I can really relate to a lot of the things >I've seen posted (or imagine must be posted), here. > >Namely: the shock of receiving an "imperfect" newborn when for nine >months, you've been expecting the opposite; the stares of wondering >others every single place you go (children AND adults, alike!); the >"tsk, tsk" that you get from total strangers who put the blame for your >child's condition soley on YOU and something YOU must have done to cause >it, not to mention your own self guilt! > >Oh, and of course, constant searching for WHY -- why did this have to >happen? Why us? Why our baby? -- And how about the surgeries, huh? >Yikes. That is definitely something I could do without! It's something >I'm sure GAELIN could do without, too! (Need I go on? <vbg!>) I think >this aspect has been THE worst of all... > >So many people, after delivery, responded to my sadness and grieving >with, "Well at least it wasn't something major like the heart..." or >similar comments. They completely disregarded the fact that this was not >a normal postpartum, that I would have to stand by as my child got >pricked, poked and cut for the majority of his years on earth... etc... > >My Gaelin has had several treatments, and two major surgeries, so far. >He supposedly won't have to have any more operations for a couple of >years (to allow time for more bone/facial development. The next one will >be bone grafting, and this will follow treatments in which his upper jaw >segments will be moved apart via an appliance... ironically tearing his >brand new palate). > >I don't know about your little ones, but wow, is Gaelin a toughie! He's >such a wonder! I learn strength and coping skills from him, daily! He's >such a gift from God!!! (as are my other two, but there *is* a subtle >difference, somehow with *him*) > >Gaelin's got sensory integration problems (he's slowly getting better, >but it was a MAJOR trial at first!!!), and verbal apraxia (the ONLY word >he's able to say, which he JUST learned last month, is "Mama" :-) You >can see he's trying like mad to make certain sounds, but he just >physically *can't* do it...) > >We use extensive sign language with him, while simultaneously working >with him in Speech Therapy, twice weekly. > >Other than this, he's considered "normal" by "mainstreamers". (Although >he couldn't possibly be anything but perfect to me, in my mind!!! He's >no different than my other children! Just as beautiful! Just as smart! >Everything!!!) > >It took a while for me to reach a sense of acceptance in regard to >Gaelin's appearance, etc... though... > >I remember, for the better part of his first year, holding him up in the >mirror (he looooved to see his reflection!), feeling immense guilt over >not appreciating his unique appearance. I even thought he was ugly. ><sigh> Talk about a rotton mother, huh? :-( > >Looking back, the disgust I feel with myself for feeling that way is >immeasurable! > >But by the time his first surgery rolled around (at 8 mths of age), it >was GAELIN who looked normal compared to other kids without the >deformity (and I *HATE* that word!), who looked strange to me. > >It was *SO* hard to hand him over to the nurse when they were ready to >take him away into surgery! > >I'll never forget how acute the urge to flee with him was!!! I didn't >see a need for the surgery anymore! I honestly didn't! > >And after his first repair, I *HATED* the way he looked! It didn't look >like my Gaelin anymore! In fact, he even SOUNDED different. I wished I >could have my "old baby" back, full, complete bilateral cleft lip and >all!!! > >My husband kept telling me how wonderful he looked, and what a terrific >job the plastic/reconstructive surgeon did... and I thought he was >crazy! I felt angry with him for thinking such a thing! It was almost >like he was telling me that he didn't like the way Gaelin looked >*before* the surgery! > >Gaelin's second surgery was just this last October. He had a palate >repair done, and was in the hospital for about a week. > >I am a very, very shy, withdrawn person, but believe me. I've gotten to >the point where I'm NOT this way in the environment of clinics and >hospitals!!! -- I've had too many dealings with incompetent, harsh, >condescending, patronizing medical professionals to just sit back and >relax in their care. (Care. Ha. What a funny word for it.) > >Anyway, hello! Sorry for the rambling introduction! I'm known for being >overly-chatty! :0) > >I'm hoping I'll "fit in" here, and am looking forward to meeting you >all! :) > >Carrie >~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*~~* >WHO WE ARE! - Home Schooling, Parenting, Photos, Childhood Surgery, >Depression & Mothering, WOH & SAH Moms, and MORE! > ~~* Sign Our Guest Book and Visit Again! *~~ >http://www.angelfire.com/oh/nursecleftbaby/hello.html >~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*~~* > ========================================================================= Date: Mon, 16 Mar 1998 20:44:00 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: GSieb91515 <GSieb91515@AOL.COM> Subject: Re: Hi, I'm new! :-) Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Welcome,
It sounds like you are dealing with quite a load at the moment. We hope you will stay on this listserver and join in the group. Our extended family is growing by leaps and bounds and I know what a great help it has been for me to be a part of this group. Hope you will too.
Brenda Siebert Houston ========================================================================= Date: Mon, 16 Mar 1998 20:49:46 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: GSieb91515 <GSieb91515@AOL.COM> Subject: Re: Intro Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Lynn,
Why did they remove Andrew's plates? Were they causing a problem. I have heard where they remove them much later. Is this the norm? Jonathan has a titanium plate at the bridge of his nose and his CT scan shows where it is already covered with bone. Dr. Sayler is going to try and remove it on the 25th but he's not sure he will be able to. Sorry to hear about your knee surgery. Hope your recovering well and that mom got much TLC. Thanks for all your help with the book. I look forward to reading it next week (if I can stay focused). I tend to not be able to read and comprehend when I'm extremely anxious. But I'm sure once the surgery is over I'll be okay.
Thanks again,
Brenda ========================================================================= Date: Tue, 17 Mar 1998 06:57:38 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jenngram <Jenngram@AOL.COM> Subject: Re: Hi Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
I wanted to welcome Jason to the group. I ma sure your knowledge and experience will help us tremondously and give insight to how our children will feel and think about things in the future.
Welcome Jennifer Graham(Tampa/St. Pete) ========================================================================= Date: Tue, 17 Mar 1998 08:59:07 -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: Christopher Kilner <Christopher.Kilner@USPTO.GOV> Subject: Ceci's mid-face distraction MIME-Version: 1.0 Content-Type: text/plain
Hello everyone,
As I think Jenn Graham mentioned a few weeks ago, mid-face advancements were formerly done using grafted rib and hip bones. For all of us with young children, the doctors have been promising "distraction osteogenesis" as the way to help our babies' faces grow. I've been on the listserv since last summer and don't recall hearing about any children having their midface advancements done by distraction yet.
Our daughter Ceci (3) is scheduled for mid-face distraction osteogenesis tomorrow (3/18) at Fairfax Hospital in Fairfax, VA. Dr. Craig Dufresne will use a newly developed (FDA approved) internal distraction device made by Howmedica-Leibinger (1 800 962 6558) which he claims is one of the first devices suitably small enough for use on young children.
Dr. Dufresne plans on accessing Ceci's face via her existing cranial scar (no haircut/shave required!), incisions from inside her mouth (above her gums), and possibly from inside her lower eyelid so the only "visible" scars will be from where the adjusting screws will protrude from her temples near her hairline. Each side will take about 2 hours and Ceci's hand surgeon (Dr. Albert Fleury) will take an hour or so to deepen her web spaces on one hand. We're expecting a 2-day hospital stay.
I'm still a little unclear on the overall time needed for the distraction. Each time we've talked to Dr. Dufresne, the time required for the procedure seems to be going down. When Ceci was born, he mentioned 9 weeks (1 wk for healing, 6 for stretching, 2 for setting). Last fall he mentioned 6 weeks (1 wk healing, 4 for stretching, 1 for setting). Last week at our pre-op visit I was busy with our 2 year old, but my wife swears he said something about 21 days total. Removal of the device is expected to be a 2 hour operation (practically outpatient).
Understandably, I'll be away from my work computer until next week and ask that any "Good Luck" messages be sent privately to my school e-mail ( ckilner@gmu.edu ) that we access from home instead of clogging up the listserv. Any questions or distraction related messages can still go to the listserv and we'll be able to answer since I'm also subscribed through my school account.
I'm hoping to put together a small web page documenting the procedure with "before and after" photos. Any ideas for making the page more helpful or informative would be greatly appreciated.
Mother's seem to "nest" and clean everything in site when they are worried about their children's' surgeries (and boy is our house clean!) - Dad's tend to turn to technology (computers, TV channel surfing, fixing the car) to handle their stress. Maybe it's a "hunter - gatherer" thing.
Chris (& Reggie & Ceci & Blair) Kilner mailto:ckilner@gmu.edu ========================================================================= Date: Tue, 17 Mar 1998 10:30:01 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Yonstein <Yonstein@AOL.COM> Subject: Re: Hi, I'm new! Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Hello Carrie:
My name is Janine Krebs and I have a 7 and a half month old daughter Emily (with Aperts) and a 3 and half year old son Nicholas. Emily also has a cleft palate.
Sounds like you are going through a very difficult time in your life right now. I am sure that you will find this group to be very helpful as to all issues with your son. I know that I have.
Also, in case you don't know already, there is a great resource on line called WIDESMILES. They have loads of information on cleft lip and palate.
Hope this helps.
Best Wishes,
Janine Krebs (NY) ========================================================================= Date: Tue, 17 Mar 1998 11:40:41 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Thornq <Thornq@AOL.COM> Subject: Re: Hi, I'm new! :-) Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Carrie,
Hello! And I wanted to let you know that you are definately welcome to our family. Our family is not just about Apert, but it is about coping with children who have a specific disability. And I hate that word "normal" too. What I have been told through this family is that we use the word "typical". Just because Gailen does not have Apert, does not mean that he is any less. Your problems aren't any less either. Everyone will agree with me that you are more than welcome to chat with us and give your input and courage. We are always here for eachother.....night or day.
Let me tell you briefly about ourselves. My name is Lynn and my son, Andrew, is 18 months old and has Apert. He has undergone three cranial surgeries and two hand surgeries. We are not anticipating another surgery until he is 3 years old. At that time, they will go back in and thin down his fingers. It has been a long road but we have made it through with flying colors. Andrew is a beautiful little boy and after his frontal advancement, he looked different and it took me awhile to get used to how different he looked. Like you, he did not look much like my little boy and I wanted the little boy I remembered back. The grieving process for me after he was born was a long one. I also had expected a perfect little boy, but in reality, I did get a perfect little boy, he was just going to need a little help by his amazing doctors.
Welcome to the family and feel free to put in your two cents whenever you feel the need. Also feel free to just let off steam anytime you need to. You will always get back some handy dandy advice.
Lynn Thornquist (Holliston, MA) ========================================================================= Date: Tue, 17 Mar 1998 11:49:33 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Thornq <Thornq@AOL.COM> Subject: Re: Intro Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Brenda,
They removed Andrew's plates because he did not want the bone to grow over because then it would be harder. The plates were not to be permanent, it was only to hold the bone in place while the bone fragments he put in the gap (from moving his frontal bone forward 3/4 of an inch) began grow and fill in the space between the frontal bone and the rest of his skull. I'm not sure what kind of metal, but he had two metal plates and 21 screws. Good thing we didn't take a plane trip. Even though the plates are gone, his skull is strong as ever. He does however have two tiny holes that have not filled in yet, but his surgeon said that when they go in and fix his eye sockets when he is 7 ot 8, and the holes are not filled, he will fill them. All the bone fragments he is using is coming from Andrew's top of his skull. They said it was extra thick, but that has turned out to be a good thing. His surgeon said that with the bone growing over the plates, it makes the head more bumpy and he tries for a smooth head (if its possible with Apert).
Your very welcome about the book. It is going priority mail to you today. My friend took it into work (we work together) and she is mailing it for me so you will definately have it in time. It is very technical and with everything going on, you probably will not be able to focus.
Good luck with Jonathan's surgery on the 25th, let us know how he does. I also included a picture of Andrew and a picture of the whole family for you. Jonathan is an adorable little boy.
I have one question. How come they have only released Jonathan's pinkie?
Talk to you real soon.
Lynn ========================================================================= Date: Tue, 17 Mar 1998 11:58:48 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Thornq <Thornq@AOL.COM> Subject: Re: Ceci's mid-face distraction Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Chris,
Good luck with Ceci's surgery tomorrow. I will be thinking of you. They didn't shave Andrew's hair either and they also used the same scar. I think thats so the children only have one scar on their head.
Lynn ========================================================================= Date: Tue, 17 Mar 1998 12:01:06 -0700 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: baconsmith <bluenose@TELUSPLANET.NET> Subject: Re: Ceci's mid-face distraction Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
Chris: Well, let me begin with my very best wishes for success for Ceci.
I have to say, the technology staggers me. I think your web page is an excellent idea and I thank you for that. It is so helpful to see what the deal is, instead of simply imagining it. I also try to do that a bit with my daughter's page in the WS gallery.
I loved your description of the hunter and gatherer. Gave me one of my first chuckles of the day.
I also subscribe to Cleft-Talk and this message came thru the WideSmiles site. I am forwarding it here in case someone might be able to help this family. It's just serendipity that your message came thru today also.
begin forwarded message: This came to me from the website.. I do not think they are on the list yet. If you have comments please send to them at MJPlatt@pol.net and MJPLatt@aol.com
forward---
Our son is only 3 weeks old and has rather severe PRS. His PS has suggested manidubular distraction surgery (placement on nuts and screws on the body and ramus of the jaw, then gradually stretching jaw out over 2 weeks) to be done at approx age 3 mos, because his jaw is so small. The PS has never done this procedure on any patient less than 2 years old, but thinks it is necessary for our son because of risk that jaw will never grow sufficiently on own. He states it is being done on very young infants in Mexico City and New York City.
I would be most interested to get more information on mandibular distraction surgery for very young babies.
MJPlatt@pol.net MJPLatt@aol.com
END FORWARDED MESSAGE
And let me also end with my very best wishes again. Please keep us posted on now Ceci is doing! Pat in Calgary (mom to the Peach, Tessier 4/5 facial cleft) email to: bluenose@telusplanet.net IM: onlypeach shake and shake the ketchup bottle. none will come and then a lot'll ... unknown ========================================================================= Date: Tue, 17 Mar 1998 11:25:45 -0800 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "Pulido, Laura" <PulidoL@OR.CSMC.EDU> Subject: Distraction MIME-Version: 1.0 Content-Type: text/plain
Very early in '97 another parent wrote a message about distraction procedures being done on very young infants in Mexico. I approached my daughter's (Martha Deanna Palacio, 2year-old with Aperts) craniofacial doc, with these news. Since I am from Guadalajara, Jalisco, Mexico, I was excited that something was being done in my home country. He told me that this procedure was indeed done on two infants who were only days old but he said what was not made public was that these babies did not make it. I don't want to scare anyone but thought I should share what this Surgeon told me.
Laura Pulido Email: PulidoL@OR.CSMC.Edu Los Angeles, California ========================================================================= Date: Tue, 17 Mar 1998 14:58:26 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: MHTeach102 <MHTeach102@AOL.COM> Subject: An Update Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Thought I would drop a line.
BJ is continuing to make improvement He is breathing on his own now. He is still on constant O2 and may be for a while. He is making grounds in his mental status now. He is aware of all the things going on and has even began to laugh and giggle some. They have had him sitting up yesterday and he seemed to enjoy it. He is beginning to tolerate semi-solid foods and his swallowing is improving greatly. They upgraded his condition from Serious to poor today, and we should be on the floor within a week. And hopefully home in a month. He starts PT and OT tommorow and that will be a test of his strength and stamina. But he is looking a lot better and we are continuing to hope for the best.
Marjorie
PS: does anyone know of music videos for kids except Barney. I am getting sick of the purple dinosaur, but the music seems to really pick up his spirits. ========================================================================= Date: Tue, 17 Mar 1998 20:42:29 GMT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Qing Gong <qing@ASRC.CESTM.ALBANY.EDU> Subject: Re: An Update Content-Type: text/plain Mime-Version: 1.0 Content-Transfer-Encoding: 7bit
> PS: does anyone know of music videos for kids except Barney. I am getting > sick > of the purple dinosaur, but the music seems to really pick up his > spirits.
Very happy to hear the good news about BJ. Best wishes for the whole family.
In regard to music videos, there are tons of them out there. There are the series of Kids Songs, Wee Sing and some Sesame Street videos that are full of songs. We have about 60 of these tapes for Vivi(2years and 6 mon old with Apert) and she watches everyone of them again and again. She knows all the songs and loves to dance and do hand motions with the music. You can find most of them in Kids R Us. You can also mail order them (I can check the 800 number for you if you need).
Qing ========================================================================= Date: Tue, 17 Mar 1998 15:11:48 -0800 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Robyn Johnston <robyn@ORDATA.COM> Subject: Re: An Update Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
Marjorie, glad to hear the good news about BJ! Sounds like he is making good progress. Thanks for keeping us posted.
Hugs, Robyn J. ========================================================================= Date: Tue, 17 Mar 1998 22:03:42 -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: "dan r. bruns" <102051.347@COMPUSERVE.COM> Subject: Ceci's mid-face distraction MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 8bit
Hello all;
Our son Patrick had the distraction device from Leibinger implanted 3 weeks ago (2/25). The surgery was performed by Dr. Jeffery Marsh from St. Louis Children's Hospital and Dr. Stephen Cohen from Atlanta who developed the device with Leibinger.
We began distraction 1 week after surgery, so we are two weeks into moving the mid-face. What is interesting, is that Patrick's mid-face is moving both forward and down. This is accomplished by the angle in which the distraction devices are mounted. The screws which are turned twice a day are actually cables. Patrick's happen to be projecting upward above his ears. We have already seen significant movement, his upper lip is starting to flatten out. Patrick has had two prior mid-face advancements. One at 2 1/2 years and one 5 years of age. Our objective with this one is to eliminate his trach tude which he has had since 2 months of age. We are keeping out fingers crossed.
Yesterday was a setback. While we were in for our weekly visit with Dr. Marsh, he noted that the device on one side (under the skin) looked like it had seperated from the skull. Xray confirmed. So, Patrick is scheduled for surgery to reattach the device tomorrow 3/18.
We are hopefull to be back on tract within a few days.
Best of luck to the Kilner's, our thoughts will be with you.
Dan, Beth, and Patrick Bruns ========================================================================= Date: Tue, 17 Mar 1998 20:02:02 -0800 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Robyn Johnston <robyn@ORDATA.COM> Subject: Re: Ceci's mid-face distraction Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
First of all, good luck to Ceci & family, I already send a longer private letter so I wont repeat again.
Second, thank you Dan, Beth and Patrick for sharing your experience also. This is sooooo interesting! I wish you all good luck in the coming weeks for success and hope they re-attach the device successfully tomorrow. I can't believe how quickly the bones are able to move. Doesn't seem real, that they could move so far, so fast! Blows me away!!!! Thank you for sharing, and please keep us posted on the progress. I think quite a few of us (I think I can speak for many) are VERY INTERESTED in this technique since our little kiddo's may be going the same route someday!
Again, good luck and thanks for sharing! You will both be in our thoughts and prayers for much success and a healthy recovery.
Hugs, Robyn Johnston ========================================================================= Date: Tue, 17 Mar 1998 23:29:33 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Camous <Camous@AOL.COM> Subject: Re: Ceci's mid-face distraction Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
In a message dated 98-03-17 08:59:19 EST, you write:
<< I'm hoping to put together a small web page documenting the procedure with "before and after" photos. Any ideas for making the page more helpful or informative would be greatly appreciated. >>
hris et al, I really like the perioperative photo gallery that Julie Sanchez put together around AJ's midface with the hours/days/weeks/months perspective. I always show it off to anyone wondering about what's in store for Evan. I actually tried to do that during Evan's first cranial surgery but as you all well know, haven't even gotten the web page stuff together. Our craniofacial surgeon at Stanford has used the distraction devices but I have no specifics. Ev has another appt there tomorrow and if I run into any of the cranio folks, I'll try to find out something. There is also a chapter about this in Michael Bentz' book "Pediatric Plastic Surgery" (Appleton Lange 1998).
Good luck, we will be waiting for your observations and keeping y'all in our prayers!
Marianne ========================================================================= Date: Wed, 18 Mar 1998 07:36:57 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jenngram <Jenngram@AOL.COM> Subject: Re: Ceci, Patrick, BJ Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Just wanted to wish Ceci and Patrick good luck..and like Robyn, this whole distraction topic is verrrry interesting..gives a bit of insight to the future..but I am sure if/when the day comes for Jordan to have it done, I'll be throwing out bunches of questions!!
Alos, wanted to say a bigh hoooray for BJs continued progress..we'll keep the Harmons in our prayers!!! What a trooper that little boy is!!!
Hope everyone is doing well preparing for upcoming surgeries. Let me just say that prior to Jordans cranial..my house was spotless, and our TV had never seen so much play time!! I knew their was a reason we subscribed to all those channels...therapy for dad!!! hahahahaha
Have a good one Jenn(Tampa/St. Pete) ========================================================================= Date: Wed, 18 Mar 1998 14:17:05 -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: Carrie Lynn Hobbs-McKenzie <clm@WIN.BRIGHT.NET> Subject: THANKYOU!!! (was Re: Hi, I'm new! MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
I just wanted to thank you all for the wonderful, warm welcome!!!
THANK YOU!!!!
I think I *will* stay for a time, and be part of your understanding family! :-)
Yes, I'm *well* aware of "Widesmiles"... unfortunately, the owner (of both the site, AND the email list) and I do *not* get along AT ALL, and I left for good six or eight months ago, after trying to hush and ignore for over a year... :-(
It's too bad...
Are any of you *also* on the "cleft-talk" list per chance??? Just curious... It's like a cult or something. Ugh...
Apologies to any and all of you who are ON that particular list and appreciate/enjoy it. I just have a bad "taste in my mouth" over it, yet...
Anyway, thanks so very much for the welcome and I look forward to getting to know all of you!!!!
God bless!!!
Carrie
--
~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*~~* WHO WE ARE! - Home Schooling, Parenting, Photos, Childhood Surgery, Depression & Mothering, WOH & SAH Moms, and MORE! ~~* Sign Our Guest Book and Visit Again! *~~ http://www.angelfire.com/oh/nursecleftbaby/hello.html ~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*~~* ========================================================================= Date: Wed, 18 Mar 1998 12:46:09 -0800 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Penny Halverson <phalvers@U.WASHINGTON.EDU> Subject: IRC's Chat Tonite! 03/18/98 (fwd) Comments: To: Crouzon Syndrome Support Group & Other Craniofacial Anomalies <crouzon@u.washington.edu> MIME-Version: 1.0 Content-Type: TEXT/PLAIN; charset=US-ASCII
Hi everyone!!!
Tonite is Friday the 13th of an IRC Big Chat Nite!! So let's get acquainted with each others. :-) Keep in mind that some people will show up alittle later than the time started. Please join us! :-)
Date To Meet On: Wednesday, March 18, 1998
IRC Server: ChatNet (Any locations)
Port Setting: 6667
Channel: #apertcrouzon or if noone's there, go to #widesmiles
Time: 11:00pm AT/10:00pm ET/9:00pm CT/8:00pm MT/7:00pm PT/5:00pm HT
To check out the mIRC Help Page for Windows 3.x and Windows 95 users at: http://www.qni.com/~kristib/mirc1.html You can download mIRC 5.31 there.
For MAC Users: Please download IRCle at: http://www.amug.org/~ircle/
If anyone needs help or have questions on accessing the chat on ChatNet. please email to Kristi at either: mailto:kristib@qni.com
Or for a quicker assistance, you can reach Kristi on AOL IM (AOL Instant Messenger) and she will be available to assist you - see below:
Kristi's screen-name: LilOneB (anytimes)
You can download the AOL IM (AOL Instant Messenger) at: http://www.aol.com/aim
You don't have to be a member to join AOL IM and it is free! AOL IM is an one to one online chat.
Hugs, Penny
http://www.crouzon.org/ mailto:penny@crouzon.org ========================================================================= Date: Wed, 18 Mar 1998 16:17:56 -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: foster <foster@ICONTECH.COM> Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
Just wanted to say welcome to all of the new people and to wish good luck to all of the up comming surgeries and speedy recoveries.
Way to go B.J.,hope everyday brings you closer to that great day when your whole family can be home together again.
Fosters in PA. ========================================================================= Date: Wed, 18 Mar 1998 16:22:50 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Yonstein <Yonstein@AOL.COM> Subject: Re: An Update Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Dear Marjorie:
I am so glad to hear that BJ is improving. You sound like you are doing well also. You are all in our continued prayers. As far as music videos are concerned, there is a bunch of tapes called Kidsongs that are great music videos. They have kids doing everything to music, singing, dancing, riding horses, on boats, etc. They make about 15 different ones or so.
Take care,
Janine ========================================================================= Date: Wed, 18 Mar 1998 16:29:09 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Yonstein <Yonstein@AOL.COM> Subject: Re: Patrick Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Patrick, Beth and Dan:
Good luck on your surgery. Hope all goes well for Patrick. Like everyone else, I too am very interested in this technology. I do know that they are doing it at NYU in New York City, which is something I will be looking into when Emily is a little older. We have her cleft palate and hands to take care of first.
Best wishes,
Janine ========================================================================= Date: Wed, 18 Mar 1998 17:52:46 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: LUVS2WRTE <LUVS2WRTE@AOL.COM> Subject: Re: An Update Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
I am sooooo glad to hear that B.J. is making great improvements. He has been in my thoughts everyday.
To all new members - I am a 20 year-old with Apert. This group is like a second family to me. I hope you will stay.
To all that had surgeries - I hope you have a speedy, peaceful recovery
Hope everyone is doing well
-Andrea ========================================================================= Date: Wed, 18 Mar 1998 19:04:12 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Thornq <Thornq@AOL.COM> Subject: Re: THANKYOU!!! (was Re: Hi, I'm new! Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Carrie,
Glad to hear your staying with our extended family. I know you will enjoy being here. The listserv is a warm and friendly place to chat, blow off steam, or just ramble on. I have found wonderful friends here and am glad that I found it.
Have a good one!!
Lynn Thornquist (Holliston, MA) ========================================================================= Date: Wed, 18 Mar 1998 20:44:50 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: GSieb91515 <GSieb91515@AOL.COM> Subject: Re: An Update Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Marjorie,
Glad to hear BJ is doing so well. My 8 yr. old used to watch the Kids Songs music videos and loved them. There is quite a variety of them (i.e. the zoo, seaworld, etc.) Disney's Fantasia has great orchestra music too. It's beautiful to listen to however it did tend to put Melissa to sleep. I think BJ would probably really enjoy the Kids Song videos. We continue to pray for the time when you can all be at home together again.
Brenda ========================================================================= Date: Wed, 18 Mar 1998 17:56:22 -0800 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Lark Jarvis <lark@INVOLVED.COM> Subject: Re: THANKYOU!!! (was Re: Hi, I'm new! In-Reply-To: <35102BC1.63DD@win.bright.net> Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
Hi Carrie,
I was wondering, the other day, how you and Gaelin were . . . glad you're here! Yep, I'm still subbed t the Cleft list, the Crouzons list . . . Mainly I'm still lurking because you encounter affected adults here and there . . . but I'm getting a little overwhelmed by volume--still takes time to delete . . . and life has been crazy around here (working 60 hr weeks, that sort of thing . .)
Anyway, glad you're back--I'd hate for you and Gaelin to have to go through this "all by yourselves"!
Lark ========================================================================= Date: Wed, 18 Mar 1998 23:08:18 +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: I'm back!
Hello everyone!
I have returned to the land of the active! Although I didn't give myself much of a break. I was here almost everyday. I needed to read the messages stay connected to this source of energy and support. Even though I didn't write to say as much, you were all in my prayers. My grandmother's visitation and funeral were difficult, but I could find quiet places in my heart and found peace. Even though she might not have understood my differences (how does "physical challenge" sound to you all?) she did love me. I will miss her.
Welcome to our new family members, Jason and Carrie. My name is Joanne and I have been "physically challenged" since birth with Aperts. (I'm trying!) I have lived 33 years and look forward to many more!
Carrie: what does LOL stand for???
I am confused with Cici's procedures she will have (BTW, my prayers are with you) I deleted the messages where everyone was talking about it, and forget what it was called. What is it? Can anyone help?
Thanks again for all of your support! Joanne in, warm, foggy, dreary, Ohio
_____________________________________________________________________ You don't need to buy Internet access to use free Internet e-mail. Get completely free e-mail from Juno at http://www.juno.com Or call Juno at (800) 654-JUNO [654-5866] ========================================================================= Date: Thu, 19 Mar 1998 06:07:55 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Christopher Kilner <ckilner@OSF1.GMU.EDU> Subject: Ceci update :-( Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
Hello everyone,
This is one of the hardest things I've ever tried to do.
At the end of Ceci's 7+ hours in surgery, she had a sudden, massive loss of blood pressure and had CPR performed for over 20 minutes. Despite positive signs like thrashing around when they started to wean her off the anesthesia, she has not shown any positive neurological activity since then and they are planning on running tests today to measure for any brain activity.
We are all taking this very hard, but know that Ceci has been such a gift. Please pray for us.
Chris, Reggie, Ceci and Blair Kilner ========================================================================= Date: Thu, 19 Mar 1998 08:52:27 -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: Judy Amerman <jamerman@UTI.COM> Subject: poem MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit
jamerman@uti.com
Several weeks ago someone sent a poem to the listserve regarding why as parents we were given these special kids from God. I have accidently deleted this and upset because I should have copied this right away. Could whoever sent that. Could you please sent it one more time? Thank you, Judy ========================================================================= Date: Thu, 19 Mar 1998 13:05:33 -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: Jack Lynch <jlynch@JNANA.COM> Organization: Jnana Technologies Subject: Re: Ceci update :-( MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Chris,
Our prayers are with you.
Jack and Alice Lynch ========================================================================= Date: Thu, 19 Mar 1998 13:33:57 -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: Don Sears <dsears@SCRS.STATE.SC.US> Subject: Re: Ceci update :-( MIME-Version: 1.0 Content-Type: text/plain
We are all here for you. There are no other words I can think of which will have any meaning for you at all.
I have put Ceci at the top of Teeter's Page, but they are upgrading our server today and it may be tomorrow before the page is visible.
May God be with you. --Don
> -----Original Message----- > From: Christopher Kilner [SMTP:ckilner@OSF1.GMU.EDU] > Sent: Thursday, March 19, 1998 6:08 AM > To: APERT@LISTSERV.AOL.COM > Subject: Ceci update :-( > > Hello everyone, > > This is one of the hardest things I've ever tried to do. > > At the end of Ceci's 7+ hours in surgery, she had a sudden, massive > loss of > blood pressure and had CPR performed for over 20 minutes. Despite > positive > signs like thrashing around when they started to wean her off the > anesthesia, she has not shown any positive neurological activity since > then > and they are planning on running tests today to measure for any brain > activity. > > We are all taking this very hard, but know that Ceci has been such a > gift. > Please pray for us. > > Chris, Reggie, Ceci and Blair Kilner ========================================================================= Date: Thu, 19 Mar 1998 20:03:41 GMT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Qing Gong <qing@ASRC.CESTM.ALBANY.EDU> Subject: Re: Ceci update :-( Mime-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
We are thinking of all of you and praying for you. Qing
> Hello everyone, > > This is one of the hardest things I've ever tried to do. > > At the end of Ceci's 7+ hours in surgery, she had a sudden, massive loss of > blood pressure and had CPR performed for over 20 minutes. Despite positive > signs like thrashing around when they started to wean her off the > anesthesia, she has not shown any positive neurological activity since then > and they are planning on running tests today to measure for any brain > activity. > > We are all taking this very hard, but know that Ceci has been such a gift. > Please pray for us. > > Chris, Reggie, Ceci and Blair Kilner ========================================================================= Date: Thu, 19 Mar 1998 16:15:45 -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: foster <foster@ICONTECH.COM> Subject: Ceci's update Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
Our prayers are with Ceci and her family. This must be a terrible time for all of you.We feel like all of the people on this server is some how connected to our lives and this is a good thing,so when something like this happens it really pulls on our heartstrings. May God bless you and keep you strong.
Hope all is well with Patrick and we hope he has a speedy recovery.
Karen & Bill Foster ========================================================================= Date: Thu, 19 Mar 1998 15:25:52 -0800 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Robyn Johnston <robyn@ORDATA.COM> Subject: Re: Ceci update :-( Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
Chris, Reggie, Blair, and Ceci,
I will be praying very hard for you. I am so sorry. You know we will be here for you whatever happens. Thank you for letting us know so we can pray for you all.
Much love, Robyn J. ========================================================================= Date: Thu, 19 Mar 1998 19:52:04 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: GSieb91515 <GSieb91515@AOL.COM> Subject: Re: Ceci update :-( Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Chris and family,
Please know how deeply we feel for all of you. We're are so sorry this happened and will continue to pray that your precious Ceci will be ok. God bless you all.
The Sieberts ========================================================================= Date: Thu, 19 Mar 1998 20:10:42 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Thornq <Thornq@AOL.COM> Subject: Re: Ceci update :-( Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Chris,
Our prayers are with you. I'm sorry to hear about the problems you are having, but like you said, Ceci is a wonderful gift from God. And know that whatever God intends for Ceci, she will be special wherever she is. She is now in his hands. Please keep us posted. I will be thinking of you until we hear.
Love from the Thornquist family coming your way.
Lynn Thornquist (Holliston, MA) ========================================================================= Date: Thu, 19 Mar 1998 19:14:03 -0600 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: ize <ize@TACOMA.CEATLABS.OKSTATE.EDU> Subject: Re: Ceci update :-( MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Chris, and Family,
Our prayers are with you!
God bless you all and specially Ceci.
The Ize's. ========================================================================= Date: Thu, 19 Mar 1998 20:34:41 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jack and Raquel <jara1@BELLSOUTH.NET> Subject: Ceci MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Our prayers are with the Kilner family. God is with you always!
Jack & Raquel Miller ========================================================================= Date: Thu, 19 Mar 1998 20:46:00 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: LUVS2WRTE <LUVS2WRTE@AOL.COM> Subject: Re: Ceci update :-( Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Dear Chris and family
I am so sorry to hear about Ceci, and will be praying that she gets back to herself. Apert children are fighters!!! We never give up!!!
-Andrea ========================================================================= Date: Thu, 19 Mar 1998 21:55:05 +0000 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "J. G. Lindamood" <chanan8@JUNO.COM> Subject: Re: Ceci update :-(
My thoughts and prayers to Ceci's family. May Gods Love as well as ours surround you during this trial. Joanne, Ohio
_____________________________________________________________________ You don't need to buy Internet access to use free Internet e-mail. Get completely free e-mail from Juno at http://www.juno.com Or call Juno at (800) 654-JUNO [654-5866] ========================================================================= Date: Fri, 20 Mar 1998 10:35:37 -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: ROBIN L HILL <CARMENRAE@PRODIGY.NET> Subject: Ceci MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit
Dear Chris:
Our thoughts and prayers are with you and your family. May God bless and comfort you during this hard time.
Mike, Robin, and Carmen Hill (Newnan, Ga) ========================================================================= Date: Fri, 20 Mar 1998 11:33:18 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Christopher Kilner <ckilner@OSF1.GMU.EDU> Subject: Sad news Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
Thank you for all the prayers.
Sadly, Ceci was pronounced brain dead at 4:00 yesterday afternoon. A rare air embolism has been determined as the cause of the loss in blood pressure. We are all heartbroken, but even in death Ceci has contiued to give joy to others. Her liver was transplanted this morning and saved the life of a local 18 month old girl. Her kidneys will help two other children.
I spoke with Christine Clark a few minutes ago. The Apert Support and Information Network will soon have its tax exempt non-profit status and we have asked that contributions be sent there (P.O. Box 1184, Fair Oaks, CA 95628) instead of flowers.
Please continue to keep us in your prayers. I can't tell you how much strength we've found from this listserv. Marjorie Harmon's writings have been especially helpful in helping us realize what a tremendous gift we have been given by having Ceci be a part of our lives for the past 3+ years.
She is an angel and we be with us always.
Chris, Reggie, and Blair Kilner ========================================================================= Date: Fri, 20 Mar 1998 08:34:10 -0800 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Penny Halverson <phalvers@U.WASHINGTON.EDU> Subject: IRC's Chat Tonite! 03/20/98 Comments: To: Crouzon Syndrome Support Group & Other Craniofacial Anomalies <crouzon@u.washington.edu> MIME-Version: 1.0 Content-Type: TEXT/PLAIN; charset=US-ASCII
Hi everyone!!!
Tonite is IRC Big Chat Nite!! So let's get acquainted with each others. :-) Keep in mind that some people will show up alittle later than the time started. Please join us! :-)
Date To Meet On: Friday, March 20, 1998
IRC Server: ChatNet (Any locations)
Port Setting: 6667
Channel: #apertcrouzon or if noone's there, go to #widesmiles
Time: 11:00pm AT/10:00pm ET/9:00pm CT/8:00pm MT/7:00pm PT/5:00pm HT
To check out the mIRC Help Page for Windows 3.x and Windows 95 users at: http://www.qni.com/~kristib/mirc1.html You can download mIRC 5.31 there.
For MAC Users: Please download IRCle at: http://www.amug.org/~ircle/
If anyone needs help or have questions on accessing the chat on ChatNet. please email to Kristi at either: mailto:kristib@qni.com
Or for a quicker assistance, you can reach Kristi on AOL IM (AOL Instant Messenger) and she will be available to assist you - see below:
Kristi's screen-name: LilOneB (anytimes)
You can download the AOL IM (AOL Instant Messenger) at: http://www.aol.com/aim
You don't have to be a member to join AOL IM and it is free! AOL IM is an one to one online chat.
Hugs, Penny
http://www.crouzon.org/ mailto:penny@crouzon.org ========================================================================= Date: Fri, 20 Mar 1998 11:58:16 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: foster <foster@ICONTECH.COM> Subject: sad news Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
We are so sorry to hear this heartbreaking news about Ceci. Our prayers are with your family always.It is good that she is able to help others and you are great people to think of others during this time. Ceci is truly an angel.
Remember that god will carry you whenever your load is to heavy. God blessyou all
Karen & Bill Foster ========================================================================= Date: Fri, 20 Mar 1998 12:06:59 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Mark Smith <dsprado@PENN.COM> Subject: Sad News MIME-Version: 1.0 Content-Type: multipart/alternative; boundary="----=_NextPart_000_0008_01BD53F8.AF393A40"
This is a multi-part message in MIME format.
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Our Friends,
You are now and always will be in our hearts and prayers. Take comfort = in knowing that Ceci is in a glorious place. Your wonderful = contribution at letting Ceci be an organ donor should be an inspiration = to everyone. =20
We pray that our strength will help you in this trying time. God Bless you all.
Mark, Michele, Megan, and Kayla
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<!DOCTYPE HTML PUBLIC "-//W3C//DTD W3 HTML//EN"> <HTML> <HEAD>
<META content=3Dtext/html;charset=3Diso-8859-1 = http-equiv=3DContent-Type> <META content=3D'"MSHTML 4.72.2106.6"' name=3DGENERATOR> </HEAD> <BODY bgColor=3D#ffffff> <DIV><FONT color=3D#000000>Our Friends,</FONT></DIV> <DIV><FONT color=3D#000000></FONT> </DIV> <DIV><FONT color=3D#000000>You are now and always will be in our hearts = and=20 prayers. Take comfort in knowing that Ceci is in a glorious = place. =20 Your wonderful contribution at letting Ceci be an organ donor should be = an=20 inspiration to everyone. </FONT></DIV> <DIV><FONT color=3D#000000></FONT> </DIV> <DIV><FONT color=3D#000000>We pray that our strength will help you in = this trying=20 time.</FONT></DIV> <DIV><FONT color=3D#000000>God Bless you all.</FONT></DIV> <DIV><FONT color=3D#000000></FONT> </DIV> <DIV><FONT color=3D#000000>Mark, Michele, Megan, and=20 Kayla</FONT></DIV></BODY></HTML>
------=_NextPart_000_0008_01BD53F8.AF393A40-- ========================================================================= Date: Fri, 20 Mar 1998 12:18:12 -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: ROBIN L HILL <CARMENRAE@PRODIGY.NET> Subject: Ceci MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit
We were so sorry to hear the sad news about Ceci. I went back to her page this morning and found such joy in the pictures there of her; she is truly an angel. God bless your family and may you find some comfort in your time of sorrow. Our thoughts and prayers will continue for your family.
Mike, Robin, and Carmen Hill (Newnan, Ga) ========================================================================= Date: Fri, 20 Mar 1998 00:31:04 -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: Elizabeth de Silva <lizsilva@SRV1.TELCONET.NET> Subject: Re: Sad news MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Dear friends,
You are always in our prayers and in our hearts. Just remember that God is always there, especially during hard times, giving you the strength and comfort to keep on. Definetely Ceci must be in glory. It is a good thing that, despite this heartbreaking moment you are passing through, you are thinking in helping others. You are an example to all of us.
You are part of our list family and we are with you.
Elizabeth and Alba Victoria
Christopher Kilner wrote:
> Thank you for all the prayers. > > Sadly, Ceci was pronounced brain dead at 4:00 yesterday afternoon. A > rare > air embolism has been determined as the cause of the loss in blood > pressure. We are all heartbroken, but even in death Ceci has contiued > to > give joy to others. Her liver was transplanted this morning and saved > the > life of a local 18 month old girl. Her kidneys will help two other > children. > > I spoke with Christine Clark a few minutes ago. The Apert Support and > > Information Network will soon have its tax exempt non-profit status > and we > have asked that contributions be sent there (P.O. Box 1184, Fair Oaks, > CA > 95628) instead of flowers. > > Please continue to keep us in your prayers. I can't tell you how much > > strength we've found from this listserv. Marjorie Harmon's writings > have > been especially helpful in helping us realize what a tremendous gift > we > have been given by having Ceci be a part of our lives for the past 3+ > years. > > She is an angel and we be with us always. > > Chris, Reggie, and Blair Kilner ========================================================================= Date: Fri, 20 Mar 1998 00:43:47 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Elizabeth de Silva <lizsilva@SRV1.TELCONET.NET> Subject: Re: poem MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Dear Judy, is this the one you were talking about? It was sent to the list by our friend Mark Smith.
Elizabeth
> HOW THE MOM OF A DISABLED CHILD IS CHOSEN > By Irma Bombeck > > Most women become mothers by accident, some by choice, a few by > social pressures and a couple by > habit. > This year, nearly 100,000 women will become mothers of handicapped > children. Did you ever wonder how > mothers of handicapped children are chosen? > Somehow I visualize God hovering over Earth selecting His > instruments for propagation with great care and > deliberation. As He observes, He instructs His angels to make notes > in a giant ledger. > "Armstrong, Beth: son; patron saint, Mathew. > "Forest, Marjorie: daughter; patron saint, Cecelia. > "Rudledge, Carrie: twins; patron saint...Gerrard. He's used to > profanity." > Finally, He passes a name to an angel and smiles, "Give her a > handicapped child." > The angel is curious. "Why this one, God? She's so happy." > "Exactly," says God, smiling. "Could I give a handicapped child > a mother who does not know laughter? > That would be cruel." > "But has she patience?" asks the angel. > "I don't want her to have too much patience or she will drown in a > sea of self-pity and despair. Once the > shock and resentment wears off, she'll handle it. I watched her > today. She has that feeling of self and > independence that is so rare and so necessary in a mother. You see, > the child I'm going to give her has his own > world. She has to make it live in her world, and that's not going to > be easy." > "But, Lord, I don't think she even believes in you." > God smiles. "No matter, I can fix that. This one is perfect. > She has just enough selfishness." > The angel gasps, "Selfishness? Is that a virtue?" > God nods. "If she can't separate herself from the child > occasionally, she'll never survive. Yes, there is a > woman whom I will bless with a child less than perfect. She doesn't > realize it yet, but she is to be envied. She > will never take for granted a 'spoken word'. She will never consider > a 'step' ordinary. When her child says > 'Mama' for the first time, she will be present for a miracle and know > it! When she describes a tree or a sunset > to her blind child, she will see it as few people ever see my > creations. > "I will permit her to see clearly the things I see...ignorance, > cruelty, prejudice...and allow her to rise above > them. She will never be alone. I will be at her side every minute of > every day of her life because she is doing > my work as surely as she is here by my side." > "And what about her patron saint?" asks the angel, his pen poised > in midair. > God smiles. "A mirror will suffice." ========================================================================= Date: Fri, 20 Mar 1998 09:52:07 -0800 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "Christine L. Clark" <apertnet@IX.NETCOM.COM> Organization: Apert Support & Information Network Subject: Poem for Ceci MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Chris, Reggie and Blair,
I am still so numb after hearing from you!! I feel so very sorry for you to have lost such a precious child!! These little kids are soooooo special.
I received this poem from Laura Pulido (Martha's Mom) after my mother passed away. I thought it was very appropriate and comforting. I am passing it on to you in hopes that it will help you, too.
God saw that she was getting tired and a cure was not to be, So He put His arms around her and whispered "Come with me". With tearful eyes we watched her suffer and saw her fade away, Although we loved her dearly, we could not make her stay, A golden heart stopped beating, a determined spirit was at rest, God broke our hearts to prove to us -- He only takes the best!
Author Unknown
Bless you and your family and may the days ahead be comforted by the memory of your dear little angel!!
Let me know if there is ANYTHING I can do!!
All my best,
Christine (Jack, Michelle and Shannon, too) ========================================================================= Date: Fri, 20 Mar 1998 14:53:30 -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: ceci MIME-version: 1.0 Content-type: text/plain; charset="us-ascii"
My families prayers are with you! Ceci is truly God's gift to you and us. She will live on in the hearts of everyone she touched! God Bless!!
Denise Graham ========================================================================= Date: Fri, 20 Mar 1998 15:03:40 -0600 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: ize <ize@TACOMA.CEATLABS.OKSTATE.EDU> Subject: Re: Said news MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Dear Chris, Reggie, and Blair,
May you know the ones we love are never gone, they live within our hearts. God Bless you all during this hard time. Our prayers and hearts will be with you always. Ceci is in a glorious place!
Claudia, Carlos, Felipe and Rafael. ========================================================================= Date: Fri, 20 Mar 1998 15:20:46 -0700 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: baconsmith <bluenose@TELUSPLANET.NET> Subject: Ceci, IRC Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
I will try my best to get there for a while. May I suggest that we all join this evening (those who can) and have a little gathering of our spirits and our children's spirits for Ceci and her family?
The only thing I can think of right now is to connect with my kids and to reflect on them, to honour the memory of this little child whom i never knew, but was so loved by her family. That somehow, by holding my own closer today, ....
Chris and family, I am so sorry for your loss. I am lost for the right words. I wanted to tell you that my mom was an organ recipient 27 years ago. This gift is truly a wonderful thing. You and Ceci have done a wonderful thing.
It's difficult to type with tears in my eyes, but I just wanted you to know that I will hold my little girl a little closer today. For Ceci.
In sympathy Pat Bacon in Calgary email to: bluenose@telusplanet.net IM: onlypeach shake and shake the ketchup bottle. none will come and then a lot'll ... unknown ========================================================================= Date: Thu, 20 Mar 1997 16:53:14 -0800 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Longshot & Darwin <Longshot.Darwin@MCIONE.COM> Subject: Re: Sad news In-Reply-To: <l03130300b138473851f9@[129.174.102.169]> MIME-version: 1.0 Content-type: text/plain; X-MAPIextension=.TXT; charset=US-ASCII Content-transfer-encoding: 7bit
We are sorry for you loss. You are in our prayers.
Rachel & Chris Fletcher ========================================================================= Date: Fri, 20 Mar 1998 17:05:41 -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: Carrie Lynn Hobbs-McKenzie <clm@WIN.BRIGHT.NET> Subject: Re: Sad news MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Christopher Kilner wrote: > > Thank you for all the prayers. > > Sadly, Ceci was pronounced brain dead at 4:00 yesterday afternoon. A
I've been watching your "story" unfold the past couple weeks, and when I read *this* post, it broke my heart!!!
I'm soooo very sorry!!! I wish I could hug you in real life. :-(
May God bring you the strength that you must need! I can't imagine. Oh, gosh, I don't know what to say!
I guess a piece of her will live on, though, in the other children she helped.
:-(
God Bless,
Carrie
--
~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*~~* WHO WE ARE! - Home Schooling, Parenting, Photos, Childhood Surgery, Depression & Mothering, WOH & SAH Moms, and MORE! ~~* Sign Our Guest Book and Visit Again! *~~ http://www.angelfire.com/oh/nursecleftbaby/hello.html ~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*~~* ========================================================================= Date: Fri, 20 Mar 1998 16:32:50 -0800 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Robyn Johnston <robyn@ORDATA.COM> Subject: Re: Ceci, IRC Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
>I will try my best to get there for a while. May I suggest that we all >join this evening (those who can) and have a little gathering of our spirits >and our children's spirits for Ceci and her family?
Pat, I will try to be there too. I think this is a wonderful suggestion.
Hugs, Robyn Johnston ========================================================================= Date: Fri, 20 Mar 1998 16:32:48 -0800 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Robyn Johnston <robyn@ORDATA.COM> Subject: Re: Sad news Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
Dear Kilner family, you are in my thoughts and prayers at this time. May God bless you all and may you find peace in knowing Ceci will never suffer again. Ceci has left more than just wonderful memories, she has enabled others to have a chance at life, where hers was lost. That is the most generous gift anybody can give. She is an absolute angel. As was suggested by Pat, I will hold my little girl a little more and a little closer tonight ... for Ceci ... to reflect.
You are in my thoughts, With much sympathy, Robyn Johnston ========================================================================= Date: Fri, 20 Mar 1998 20:30:54 -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: Jack and Raquel <jara1@BELLSOUTH.NET> Subject: Ceci MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Chris, Reggie and Blair,
We are so very sorry for your loss. But always remember that our loss is heaven's gain. Ceci as said before is a beautiful angel up in heaven that will always be in our hearts. God will never ever gives us more than we can handle, I know that at times like these it's hard to accept, but stay focused in him and he will give you stength that is unimaginable. Our prayers are with your family today and always...
Jack, Raquel, Michelle, Steven, Erica and Nicole.... ========================================================================= Date: Fri, 20 Mar 1998 20:49:52 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: GSieb91515 <GSieb91515@AOL.COM> Subject: Re: Sad news Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Chris, Reggie and Blair,
We are devastated by this sad news. We feel as though we have lost a member of our family too. Ceci will be missed very much but we know she will be looking down on Jonathan and all of our children from heaven. Your gift from Ceci to save other lives is such a blessing. We will continue to pray for you during this very difficult time and please know that we are here for you.
God be with you.
With much love,
Brenda, George, Melissa and Jonathan Siebert ========================================================================= Date: Fri, 20 Mar 1998 22:55:17 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Thornq <Thornq@AOL.COM> Subject: Re: Sad news Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
To the whole Kilner Family,
I had wished all day that I would not have to type this reply. I am truly sorry for your loss. Try and be assured that God now has Ceci in his home where she will stay forever beautiful. You now have a special angel in heaven you can call your own. There is not much else to say, but how sorry I am that you have had to endure this. But because of your precious little girl, and you yourselves, three other children will live on. I guess you can say that a piece of Ceci will live on as well. What a wonderful gift you have given to others when it is so difficult to let go. My heart breaks for you in your time of need. Love to the whole Kilner Family.
Lynn Thornquist (Holliston, MA) ========================================================================= Date: Fri, 20 Mar 1998 23:33:33 +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: Praying for Ceci's family
Chris, Reggie and Blair,
My heart aches for all of you. Through Teeter's page, I was able to "meet" your family. I was touched by the photos. Please know my prayers and thoughts are with you tonight and through out this time.
Warmly, Joanne
_____________________________________________________________________ You don't need to buy Internet access to use free Internet e-mail. Get completely free e-mail from Juno at http://www.juno.com Or call Juno at (800) 654-JUNO [654-5866] ========================================================================= Date: Sat, 21 Mar 1998 12:15:16 -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: JMuggli <jmuggli@CVTV.NET> Subject: Kilner Family MIME-Version: 1.0 Content-Type: text/plain; charset="us-ascii" Content-Transfer-Encoding: 7bit
Chris, Reggie and Blair, You will never realize how many lives Ceci has touched. She will live on through others. What a wonderful legacy.
May faith sustain you, God's love surround you, And happy memories comfort you now and in the days ahead.
Jack and Jennie Muggli Loving Grandparents from Weimar, Texas ========================================================================= Date: Sat, 21 Mar 1998 08:04:09 -0800 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Penny Halverson <phalvers@U.WASHINGTON.EDU> Subject: IRC's Chat Tonite! 03/21/98 Comments: To: Crouzon Syndrome Support Group & Other Craniofacial Anomalies <crouzon@u.washington.edu> MIME-Version: 1.0 Content-Type: TEXT/PLAIN; charset=US-ASCII
Hi everyone!!!
Tonite is IRC Big Chat Nite!! :-) Keep in mind that some people will show up alittle later than the time started. Please join us! :-)
NOTE: Eveyone please join us as we will be sharing special prayers and sympathys for the Kilner's family in remembrance of Ceci's.
Date To Meet On: Saturday, March 21, 1998
IRC Server: ChatNet (Any locations)
Port Setting: 6667
Channel: #apertcrouzon or if noone's there, go to #widesmiles
Time: 11:00pm AT/10:00pm ET/9:00pm CT/8:00pm MT/7:00pm PT/5:00pm HT
To check out the mIRC Help Page for Windows 3.x and Windows 95 users at: http://www.qni.com/~kristib/mirc1.html You can download mIRC 5.31 there.
For MAC Users: Please download IRCle at: http://www.amug.org/~ircle/
If anyone needs help or have questions on accessing the chat on ChatNet. please email to Kristi at either: mailto:kristib@qni.com
Or for a quicker assistance, you can reach Kristi on AOL IM (AOL Instant Messenger) and she will be available to assist you - see below:
Kristi's screen-name: LilOneB (anytimes)
You can download the AOL IM (AOL Instant Messenger) at: http://www.aol.com/aim
You don't have to be a member to join AOL IM and it is free! AOL IM is an one to one online chat.
Hugs, Penny
http://www.crouzon.org/ mailto:penny@crouzon.org ========================================================================= Date: Sat, 21 Mar 1998 12:48:31 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Gaylann1 <Gaylann1@AOL.COM> Subject: Ceci Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
To the Kilner Family, This is so devastating. You know all of us out here with similar babies are just so concerned. Our prayers are with you. How could something like this happen? We are all taking it hard. We care about you. Love, Gaylann ========================================================================= Date: Sat, 21 Mar 1998 10:48:54 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Yonstein <Yonstein@AOL.COM> Subject: Prayers for the Kilner Family Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
To the Kilner Family:
I was away from my computer for 2 days and was very saddened to learn about Ceci. I can't imagine what you all must be feeling. Know that my thoughts and prayers are with you during this very difficult time.
What you have done by donating Ceci's organs is a wonderful gift. Ceci's will always remain in our hearts.
God Bless
Janine Krebs (NY) ========================================================================= Date: Sat, 21 Mar 1998 15:07:32 -0800 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "Christine L. Clark" <apertnet@IX.NETCOM.COM> Organization: Apert Support & Information Network Subject: Thank you & next issue of APERT NEWS MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Thank you to all the wonderful people who have sent e-mails and sympathy cards after my mother passed away. I appreciate your thoughtfulness!!
We are leaving for a previously planned vacation on March 26th until April 6th and then the girls and myself will be going with my father to Lake Tahoe to celebrate his birthday. Jack will join us there for Easter.
Then, after we get through Shannon's birthday party on April 18th, I plan to get a newsletter out. I know I have said that before but I am going to do my best!! Thanks for your patience!!!!!!
All my best,
Christine ========================================================================= Date: Sat, 21 Mar 1998 15:22:32 -0800 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "Christine L. Clark" <apertnet@IX.NETCOM.COM> Organization: Apert Support & Information Network Subject: Apert family get together in San Diego MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
To everyone near San Diego (or anyone who wants to travel):
APERT FAMILY GET TOGETHER
Saturday, April 4th in San Diego
The Clark family is going on vacation and would like to meet you for some fun in the park! Directions are below.
Bring your family - friends are welcome, too.
BRING YOUR OWN PICNIC LUNCH and meet at Mission Bay park starting at 11:00am.
No RSVP required but if you have any questions, call Christine Clark at a number below:
(916) 961-1092 until March 25th (916) 499-1485 (pager) available through day of event (especially if you get lost, hah!)
FROM INTERSTATE 5 SOUTH: Take the Sea World Drive turn off, go right at signal to next signal which is East Mission Bay Drive. Take another right and proceed 4/10 of a mile to play area (on your left). This is just south of the Hilton Hotel.
FROM INTERSTATE 5 NORTH: Take Sea World Drive turn off and go left over bridge. Turn right at East Mission Bay Drive and proceed 4/10 of a mile to play area (on your left).
HOPE TO SEE YOU THERE!!
Christine ========================================================================= Date: Sat, 21 Mar 1998 19:30:16 -0600 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: ize <ize@TACOMA.CEATLABS.OKSTATE.EDU> Subject: Dr. Sargent's book MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Janine,
I want to thank you for the information and phone number about Tennessee Craniofacial Center. A week ago I called there asking about Dr. Sargent's book and I just received it free of charge on my mail today. The book is amazing! What a wonderful doctor he must be. I would like to encorage those of you that dont have the copy of the book yet to call them and ask for one. The telephone number is 1-800-418-3223, ask for Terri Farmer.
Thanks again, The Ize's. ========================================================================= Date: Sat, 21 Mar 1998 21:31:21 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: TheMorenos <TheMorenos@AOL.COM> Subject: Re: Sad news Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
I am so very sorry. Our love and prayers...robin moreno and family