========================================================================= Date: Thu, 1 Jan 1998 09:15:16 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jenngram <Jenngram@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Re: Happy New Year Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Happy New Year to everyone..and a belated Merry Christmas. We have just returned from New Orleans, and although I had access to the list., I lacked some serious time. It was our first trip home since Jordan was born, so there were lots of people wanting to get their hands on him..not to mention grandparents/aunts/uncles/cousins!! It was nice to be back home (although I guess St. Petersburg is OUR home), but Jordan and I are now recovering from too much stimulation. Unfortunately he deals with sensory overload much differently than I...I need sleep and he doesn't!! But he was an absolute angel on the 11 hr. car trip..no crying both ways!! Who could ask for more!!
Now for business...First I want to let the Harmons know that we are keeping you in our thoughts and prayers..My mom has asked her church and bible study group to keep ya'll in their thoughts as well. I esp. enjoyed the update re: The Make a Wish Foundation. My parents have some friends who donate a signifigant amount of money to charity each year, and choose a charity centered around children this year..partly because of being involved w/ Jordan this year. They choose The Make a Wish Foundation, and I was able to relay your story to them and like they said "Its not often you get to hear about the good that goes on in the world..and its nice to think maybe we were a small part of that" I sincerly hope things are going in BJ's favor and continue to do so through 1998 and on.
Secondly, welcome to the LeCara family. I think ya'll will enjoy this place as much as the rest of us.
And thirdly, Mark, the article about choosing the mom of a handicapped child was wonderful..one I hadn't read and is now on our frig..although my husband is considering writing Irma and asking her how the dad of a handicapped child is choosen..I mean we wouldn't want to be sexist this day in age!!! HA!HA! :))
Now a real quick update on my little crumbsnatcher...after trying to poison Jordan for his CT scans earlier in Dec..we found out that his nasal CT was fine, no sleep apnea..just conjestion and hopefully time and the summer will improve it..Gee sounds familiar. We still don't have the 3-D CT results yet, but thats more for us to know 100% which sutures are fused..Surgery, for suture release, will be in the next few weeks..Jordan is already 4 mos. old..where does the time go??? So I was wondering, after the first surgery..and possibly subsequent ones..what was the discomfort level (patients..not parents :) :)) after discharege? Any personality changes?? I know that sound weird, but we just got Jordan where we like him..on a routine..bedtime schedule, etc..and I am terrified I will have a crazy child again after surgery. Any tips or words of wisdom would be appreciated.
We go to the Developmental Physician, (for 3 hrs.) on Mon. and while we still don't have a high enjoyment of being on our stomach..or any interest in it at all..we seem to be ahaed in other aspects..he talks 24-7..ALL the time!! we just laugh, listen, ad talk back. He has a lot of inflection in his voice..used to listening to mommy yell at insurance companys and doctors billing offices. While he doesn't want to crawl..he wants to stand and does so quite often on my yet to be flat stomach! So hopefully all the developmental issues will even out. I did find out my nephew, who is 2 1/2 now, never really crawled. He crawled on a Mon. and was walking on the same Thurs...hmm..I've talked to a few people w/ similar experiences..its not so uncommon apparently. Who Knows!! Too many rules/regs/ and things to be "on alert" for.
Well, I guess I have made up for being gone a few weeks. Hope everyone is happy and healthy on the first day of 1998!
Jenn (St. Pete, Fl...Home of Outback Bowel traffic jams) :)) :)) ========================================================================= Date: Thu, 1 Jan 1998 09:54:20 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jenngram <Jenngram@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Re: Sears e-mail Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Don,
Sorry to broadcast this to everyone, but I have been trying to dend you an e- mail, privately, and it keeps being returned "Host unknown"...Know anything about this? Anyone else having trouble?? I was sending you a note re: wondering if you received Jordans pictures? No pressure, just curious.
Let me know about your address.
Thanx Jenn ========================================================================= Date: Thu, 1 Jan 1998 11:47:38 -0800 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Joseph Chan <jchan7@PACBELL.NET> Subject: Good to be home! MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Hello everyone! Happy New Year! We are back happily basking in sunny 80* weather. We spent Christmas in New York with Grandparents and relatives. Roxanne and siblings had such a great time. We went outdoor ice skating (a first!) in Central Park, had lunch at the Hard Rock Cafe in Manhattan, saw the Big Apple Circus at Lincoln Center, visited Macy's Santa's Village display and marvelled at the terrific toys in FAO Schwarz on Fifth Avenue. Busy!!! Roxy (9 yrs.) travelled well, although her hearing aids were making buzzing noises in flight so we took them off. Relatives have stopped asking about her Apert condition, which I guess is a good sign. Our family came back with colds, all seven of us! Matthew (1 yr.) is battling his third cold this season, so he's quite "clingy" and won't let me out of his sight. I suppose we fragile Californians can't tolerate real winter weather! God bless you all in 1998!
Rose La Mirada, CA ========================================================================= Date: Thu, 1 Jan 1998 15:29:06 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Yonstein <Yonstein@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Surgery Reply Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Hello Everyone, welcome to 1998.
Jenn, Emily went through the cranial surgery 2 months ago. It was a five and a half operation and five days in PICU. She did great. Mom and Dad on the other hand, had a harder time of it. The hardest part was getting used to seeing her with all of the tubes coming out of every part of her body. Her head, eyes and it seemed whole upper part of her were swollen, but it went away so quickly. She didn't open her eyes for two days, but when she did it was great.
She started drinking her formula after the third day and sure enough on the fifth day she was home. She didn't require any extra care, just keeping the wound clean and applying some bacitracin to it.
As far as her mood goes, she was a little out of sorts for about 2 weeks. Her sleeping was a little confused and she had diarrhea for awhile. With the anesthesia and sterroids and pain meds. who can blame her. Now, 2 months later, aside from the scar, and the change in appearance, you would never know.
As far a developmental things, I am proud to say that my little girl rolled over for the very first time on Tuesday at 5 months old, which is only 2 weeks later than her big brother did. So you never know, right? She seems to be ok, except a little weak in the shoulder area also.
Well, enough of my chatting on and on. Welcome back from your trip. Hope Jordan is doing well.
Take care, everyone,
Janine Krebs ========================================================================= Date: Thu, 1 Jan 1998 18:35:14 +0000 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "J. G. Lindamood" <chanan8@JUNO.COM>
Hello and a healthy New Year to everyone!
It is my hopes that everyone, especially the Harmon family were able to ring in the new year with high hopes and great anticipations! I was up until 2:00a.m. (UGH!) It's been a long time since that happened and I forgot just how bright daylight is when you are lacking sleep! Believe it or not, we, here in Ohio, have enjoyed the second sunny day in a row! OOH WEE! Rose, I was a tad jealous to hear about the 80* weather, but it got worse when you said you went to the Hard Rock Cafe in Manhattan! OHHH I wish I could do that and all of the other neat stuff you all did! I have visited the 'Cafe in Chicago! FUN! Welcome back Jenn, I was wondering where you went! Glad to hear you are safe and sound!
I'm expecting company in less than an hour, better get moving! Thanks for "listening" to my chatter!
Joanne in Ohio, sunny, cold, and YES! We have SNOW!!!! :-} ========================================================================= Date: Fri, 2 Jan 1998 12:46:56 -0700 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: baconsmith <bluenose@TELUSPLANET.NET> Subject: Re: Surgery Reply Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
Happy New year to everyone. Jenn, just a quick reply to the surgery question -- my daughter had an orbital advancement last summer. I have to echo what Janine said about Emily --- swelling -- my little girl had a round head and face just exactly like Charlie Brown. Her eyes were swollen shut for about two days, she was in ICU for two days and then one night on the ward and then we were released. She bounced back really quick, refusing even tylenol as a pain med following release from hosp. She was on a morphine drip for three days following surgery. Her staples were removed about ten days post op.
Not exactly the same kind of surgery, but sort of similar. Also my daughter was four years old. Her first surgery was age 3 weeks and second age 3 and ahlf months, thrid surgery at 4 and a half months and fourth surgery at 10 months.
She has had seven so far. She doesn't have Aperts, but a rare form of clefting.
It is scary and nerve wracking to have an infant or child undergoing surgery, especially these long general anesthetics, but they do amazingly well it seems.
Before the surgery, try to get as much rest as possible, and bump your diet up to a super healthful one. Some moderate exercise will also help you deal with the stress. All of this is easier said than done, I know. If you have anyone asking what they can do, don't be afraid to call on them for a batch of muffins or a casserole for the freezer. It's these little things that can save your 'bacon' so to speak, and really help get you and your family thru a stressful time. I focus on all these things because ultimately you have to be there for your little fella, so I think of it as being in good shape to handle the demands of a baby/child recovering from surgery.
Well, best to you and I hope this helps.
Pat Bacon in Calgary mom to the Peach, 4yo, Tessier facial cleft
email to: bluenose@telusplanet.net We are all worms, but I do believe that I am a glow-worm." Winston Churchill ========================================================================= Date: Fri, 2 Jan 1998 15:06:18 -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: Jim and Kelly Younkin <JimandKelly@YOUNKIN.COM> Subject: Re: Surgery Reply MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit
Jenn, Hi! Just a quick note to echo what everyone else has said. Try to take good care of yourself before and during the hospital stay. Also, if you'll be staying overnight at the hospital don't be afraid to ask for blankets/sheets/etc to make yourself comfortable. After freezing the first night or 2 Sara was an inpatient, I learned not to be so tentative. The nurses will (in most cases) be glad to tell you where they keep the linens and which floor has the best late-night coffee machine! The swelling IS frightening at first glance and he'll most likely be very pale but it all goes away pretty quickly. We found that it helped Sara to play beforehand with some toys that play music and then we put them in her hospital crib and wound them up to let her know that even though she couldn't see there were familiar things around her. For a few weeks beforehand, whenever she got upset I'd rub her belly instead of her head because I knew that after surgery we wouldn't be able to rub her head to comfort her. If there's a certain type of touch he finds comforting or upsetting be sure to let the nurses know that if you need to be out of the room for a while. Best wishes--we'll be thinking of you! Happy New Year to all! The Younkins ========================================================================= Date: Fri, 2 Jan 1998 15:20:14 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Gaylann1 <Gaylann1@AOL.COM> Organization: AOL (http://www.aol.com) Subject: surgery reply Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Dear Janine, I've just read all the responses about experiences with surgery. Blake, my grandson, has crouzons and we are scheduled for a third cranial vault expansion January 27. Blake will be 4 in April and has already had two cranial surgeries and forehead repair. This surgery will involve forehead repair also. The plastic surgeon explained leaving bone for further surgeries. It is important that you have a doctor that you trust. Blake had both of his surgeries here in Memphis. We had a great neurosurgeon but have our doubts about the plastic surgeon, so now we are going to Dallas this time. To be honest I'm scared to death. Blake is so dear to us and we just hate to see him suffer like this. The surgeries when he was an infant I guess was easier because what got me through was that he will never remember them. This time at this age I'm afraid he will be more difficult and will remember everything. I wish I could tell you it's easy but it's not. I think the advice of getting yourself healthy and strong is a good suggestion. I think I will plan on getting Sonya out for a walk or something if I can get her away from Blake. When he was recovering from the other surgeries she walked him in a red wagon (furnished by the hospital) for hours. At 3 o'clock in the morning the was on other floors of the hospital...I guess bored with their floor. Blake was in the hospital about 5 each time. He also has a shunt. They shaved his head before but this clinic says they won't so I'm hoping he will look better soon just because he will still have hair.
Keep in touch,
Gaylann, Blake's grandmother. ========================================================================= Date: Fri, 2 Jan 1998 17:57:12 -0800 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Robyn Johnston <robyn@ORDATA.COM> Subject: Re: surgery reply Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
Hi Jenn,
I echo all of the previous "expertise" given so far. These little ones do swell unbelievabley, but it is temporary. Like Pat said, they do resemble Charlie Brown for a couple of days. My only other words of advise would be to get some rest if you can while Jordan is in the hospital. If you have any family coming along, let them stay with Jordan for a couple of hours when possible during the day, while you go run back to the hotel room to shower and take naps. It may seem minor but believe me a 3 hour nap and a hot shower can do wonders after a fairly sleepless night at the hospital (if you stay the night). Our hospital had folding "cots" that they could wheel into the room for parents to sleep in.
Good luck and we will be sending good thoughts your way. Robyn & the Plum Eugene, OR
At 03:20 PM 1/2/98 EST, you wrote: >Dear Janine, >I've just read all the responses about experiences with surgery. Blake, my >grandson, has crouzons and we are scheduled for a third cranial vault >expansion January 27. Blake will be 4 in April and has already had two >cranial surgeries and forehead repair. This surgery will involve forehead >repair also. The plastic surgeon explained leaving bone for further >surgeries. It is important that you have a doctor that you trust. Blake had >both of his surgeries here in Memphis. We had a great neurosurgeon but have >our doubts about the plastic surgeon, so now we are going to Dallas this time. >To be honest I'm scared to death. Blake is so dear to us and we just hate to >see him suffer like this. The surgeries when he was an infant I guess was >easier because what got me through was that he will never remember them. This >time at this age I'm afraid he will be more difficult and will remember >everything. I wish I could tell you it's easy but it's not. I think the >advice of getting yourself healthy and strong is a good suggestion. I think I >will plan on getting Sonya out for a walk or something if I can get her away >from Blake. When he was recovering from the other surgeries she walked him in >a red wagon (furnished by the hospital) for hours. At 3 o'clock in the >morning the was on other floors of the hospital...I guess bored with their >floor. Blake was in the hospital about 5 each time. He also has a shunt. >They shaved his head before but this clinic says they won't so I'm hoping he >will look better soon just because he will still have hair. > >Keep in touch, > >Gaylann, Blake's grandmother. > ========================================================================= Date: Fri, 2 Jan 1998 22:39:22 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jenngram <Jenngram@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Re: surgery replies Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
I just wanted to thank everyone for their imput regarding Jordans upcoming event. We found oyt today that 2-10-98 is the big day..now I can spend the next few weeks getting psyched up. Fortunately the surgery will be done here at home so we'll be close..several of the nurses have said to get plenty of rest as well, that he won't remember us being there, or not being there this time, but once he has the other procedures at 3 and 4 yrs. we'll have to move in b/c he'll go crazy if we are not there to feed him, bathe him, etc..soo we'll see. I'm sure I'll get to know the second floor of All Children's as well as I got to know the first after he was born.
Well, I just put the little bugger to bed and hes turning into such a big boy. He was all tuckered out..we had him on his stomach on a ball today trying to get him use to being on his tummy w/o mashing his face. He pulls his head up, but it wears him out. Poor little guy, with both his parents in the medical profession..and having learned all the "shoulds" he doesn't stand a chance!! HAHA!!
Thanks again for the imput. Hope everyone had a great holiday..back to the usual grind!!
Jenn ========================================================================= Date: Fri, 2 Jan 1998 23:22:24 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: Irmocat2 <Irmocat2@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Re: Sears e-mail Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Possibly there may be a delay in transitions if you were writing to catndon@apert.org. This should be fixed shortly. You're always welcome to use my personal email addresses: catndon@aol.com or dsears@scrs.state.sc.us
Sure did get Jordan 's pictures - hoping to get them on this weekend!!
Don ========================================================================= Date: Sat, 3 Jan 1998 08:11:54 +0000 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "J. G. Lindamood" <chanan8@JUNO.COM>
Hello!
I was wondering... Since I am 32 years ahead of technology, and didn't have the surgeries Apert Children are having these days, could someone briefly explain to me what the surgeries are going to accomplish. I say broefly because I know how detaild some surgeries can be. I'm feel out of the loop when I read about someone going into surgery and don't know the technical wording and all. This will help me understand, for instance, Jordans trip coming up in February. Thanks!
Joanne in Ohio. Snow is gone, but the sun still shines! ========================================================================= Date: Sat, 3 Jan 1998 08:44:59 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jenngram <Jenngram@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Re: surgeries Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Joanne,
As frighening as this may be i can try to tell you what I have learned re: surgeries. I may stand corrected, and if I do someone please jump in and do so.
First, if you type in Pediatric Neurosurgey there is a good cranial anatomy lesson w/ pictures edited by Neil Feldstein. It shows the plates of the skull, the suture lines, and pictures of the shape of the head depending on which sutures are fused. its nice to refer to when people start talking about which sutures are fused, and correction of head shape.
Jordan, for instance, is having a bifrontal craniotomy because both of his coronal sutures are fused..I thnk this is the most common fusion?? But by no means the only way things go. Basically it involves his forhead..the forhead is composed of 2 plates (frontal plates) and they are connected to the 2 plates which make up the majority of the skull (parietal) by the coronal sutures. This sutures were fused prematurely resulting in 1 of the traits of Apert..the other being the syndactly of hands/feet. Anyway, this fusion has resulted in a wider than normal skull b/c the brain had to alter its normal growth pathway since it couldn't push the frontal bones outward (B/c of the fused coronal sutures keeping everything locked in tightly).
From what I have gathered, this first surgery (bifrontal craniotomy) is basically where they take off the forhead bone (parietal plates) and flip them 90 degrees. thhis provides some room for the still rapidly growing brain to grow outward (b/c the sutures have been losened..so to speak) and not so much in the other directions which may make him appear even more distorted than he my already appear ( I see him everyday and he doesn't look funny at all..but then I am biased). It also inhibits any intracranial pressure that may (or may not) occur due to lack of space..maybe this is more likely if your set up to have a really big, huge brain or something (just joking)..wh knows why it happens to some and not others. All I know is Jordans soft spots are closing..hes growing like a weed..and we're getting nervous!! The increased pressure may or may not cause some diminishng of mental functioning. No one really knows how much a brain can take..Go figure..who wants to volunteer for that study????
Anyway, at htis time they will also build him a brow line/bone..technically called occupital advancement or something. I think this may be for asthetic purposes, there may be another reason..ANYONE??ANYONE?? Our doctor didn't want to do the surgery until 5 mos. or so b/c the bones would still be too soft to be able to shape. Apparently you can have it done at anytime after the bones are easy to work with. It doesn't sound like much fun, and I am not sure, as an adult, if I would be so eager to have this done. Sounds extremly uncomfortable. If you have ever been hit in the face w/ an object, in a car wreck, broken anything..or even had braces or a headgear..moving bones around HURTS!!!
Now this is this the first set that Jordans having. from what I have gathered others have had different ones first, and there are lots more ahead. I just don't know anything about the others. I am sure the others will enlighten both of us..at least I hope so.
Hope this helps. I wanted everyone to read this in the event I was wrong and needed some help with my facts. Check out that pediatric neurosurgery home page..its fairly interesting..i printed out a copy of the anatomy for my easy reference! Could you tell???
Enjoy the cool weather..our winter in Fla. is over! We're back to 80 degreee weather w/ 100% humidity. Which is horrible for a girl who loved Kansas City and their cold/dreary/ windy weather. My husband however is in heaven!! Golf and/or the beach 48 weeks out of the year!!
HAve a great weekend
Jenn ========================================================================= Date: Sat, 3 Jan 1998 14:16:42 -0600 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Chad & Denise Graham <cgraham@INFOAVE.NET> Subject: stomach MIME-version: 1.0 Content-type: text/plain; charset="us-ascii"
Jenn,
Daryl hated to be on his stomach, also. His therapist said he was gravitational insecure. He would scream bloody murder, but he adjusted over time. After his shunt surgery, he really began to do more and not be as afraid of being on his stomach. He never crawled, but he scooted on his bottom, and is now walking. It sounds like his is doing well. You sound like you have adjusted well to the situation and are taking charge. That will help keep you on top of everything and make you feel like you are doing the best thing for Jordan. Good luck!!
Denise Graham ========================================================================= Date: Sat, 3 Jan 1998 21:16:44 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: WCMurph <WCMurph@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Hello Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Happy New Year to all,
I guess I'm the new guy on the block. My name is Bill Murphey and I'm from Springfield, Virginia. On Dec. 29th, 1997, God presented my wife, Angie, and I with a most beautiful gift: Samuel Ryan Murphey. He was diagnosed with Apert Syndrome and is still at Bethesda Naval Hospital. Sam is our third child and his condition was, to say the least, quite a surprise to us. We've been through many tears this week, but we're pressing on.
As you all have probably done before, we're trying to gather as much information about Aperts as we possibly can. Any good advice on where to begin? We still have no idea when he will be able to come home with us, as he needs to be seen by a few more specialists first. I'm on active duty in the Air Force, so if anyone has any info regarding how the military's Exceptional Family Member Program REALLY works that would be appreciated as well.
We just now beginning to see the the very tip of the iceberg...
Best of luck to all of you,
Bill Murphey ========================================================================= Date: Sat, 3 Jan 1998 21:37:08 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Yonstein <Yonstein@AOL.COM> Organization: AOL (http://www.aol.com) Subject: In This Day Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Hello again,
A couple of weeks (or months) ago, one of you sent a poem titled "In this Day" and I neglected to save it. Someone I know could really use it and I was wondering if you could send it again for me. I would really appreciate it.
Thanks,
Janine ========================================================================= Date: Sat, 3 Jan 1998 21:59:06 +0000 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "J. G. Lindamood" <chanan8@JUNO.COM>
Hello Jenn!
Thank you for the information, it helped a lot! I only had one surgery on my skull, and four on my hands. I am so totally unfamiliar with what's going on now. It sounds like the kids today are having further surgeries for cosmetic reasons?? Am I accurate??? SOMETIMES I wish I could have had more work done on my face. It seems like everyone notices that I'm different before they ever see my hands. I can see their reaction change when they spot me. I do have my medical records from those surgeries, a gift from the doctor who performed them. I was in a curious mode a few years back and wrote to him, requesting the information. Unfortunately, they are in the medical lingo that goes completely over my head! Thanks for the internet information. I don't have access to the net here at home, but have limited access at work. I will try to look it up Monday, my first day back after a two week vacation! :-( Bummer!
I am still on the job hunt and will really get serious now that the holidays are over. I have a tentative interview with another literacy center where I have been working one day a week. That center is in bad shape. With the experience I have gained working at the other center four days a week, they need me. I know I can turn the place around! I sent my resume to the powers that be and created my own position - Assistant Director. They called me right before Christmas and left message for me to call them back after the holidays for an interview. Please keep this in your thoughts and prayers! If I can get on there, where I have already proven myself, I won't have to go through the stress of proving myself elsewhere.
I will keep Jordan in my thoughts and prayers, along with BJ and everyone else out there going through surgeries.
Thanks again Jenn!
Joanne, in I can't believe how warm it is, Ohio ========================================================================= Date: Sat, 3 Jan 1998 21:55:29 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Yonstein <Yonstein@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Re: Hello Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Welcome Bill, Angie and Sam. First and foremost, congratulations on the birth of Samuel. My name is Janine and my daughter Emily is 5 months old. She is our second child, and her Aperts was a surprise to us as well.
When I first borrowed a relative's computer and signed on to Teeter's Page, one of the letters that I read was from one of the mom's who said to new parents, you will get through this. I cried and cried as I read that because at that moment I never thought I would.
Now at five months I can say that I love her more than anything. This is the hardest thing I have had to do, but it does get a little easier. So enough of that.
As far as info goes, Teeter's Page, Christine Clark has Apert News, a newsletter and the Children's Craniofacial Association has a pamphlet called "A guide to Understanding Apert Syndrome" which is helpful. I am still trying to gather as much information as I can and am open to any suggestions also.
I hope Sam is doing ok and is able to be released soon.
Welcome to the group. This is a fabulous place to be for practical info and for support.
Best Wishes,
Janine Krebs (NY) ========================================================================= Date: Sat, 3 Jan 1998 21:55:00 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Yonstein <Yonstein@AOL.COM> Organization: AOL (http://www.aol.com) Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Joanne:
Good luck on the job interview!!
Janine ========================================================================= Date: Sat, 3 Jan 1998 21:59:25 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Yonstein <Yonstein@AOL.COM> Organization: AOL (http://www.aol.com) Subject: HELP!!!! Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Help. I know this sounds pretty lame, but I lost Teeter's Page from my "Favorite Places". I know you said it was moving, but I didn't write down where it was moving to. If you could post it for me again, I would appreciate it.
Thanks,
Janine ========================================================================= Date: Sat, 3 Jan 1998 22:11:15 +0000 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "J. G. Lindamood" <chanan8@JUNO.COM>
Hello Bill & Angie and Welcome to the family!
I'm Joanne, I'm 32 and I have Aperts. As you might have already read, I'm not "up" on the latest technology etc.. But I do have 32 years of experience I am willing to share with you. Many wonderful people are connected to this list and I'm sure between all of us, we can make the iceberg melt a little faster. You started at the right place, here with us. We are all one big family here. Wish I could help you with the military programs. Welcome and I wish you, Angie, Sam and your other children all the best.
Joanne in Ohio ========================================================================= Date: Sat, 3 Jan 1998 22:09:36 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jenngram <Jenngram@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Re: Hello Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Bill,
First Congratulations on the arrival of Samuel (hope the spelling isn't too terrrible) and welcome to the group. Our litle boy, Jordan, was born 9-18-97..and boy was it a shocker!! This group has provided so much information and support over the past few months, and I think you and your family will find the same.
I know its a long road, but just think of every day as a celebration..there is always something outstanding that little boy of yours will accomplish every day..he will suprise you, and you will suprise yourself. Take first things first, and concentrate on getting the little guy home..then stress about the rest. Its a lot to take in, but this group has more words of understanding, support, and knowledge than anwhere else. So take advantage, no question will be left unanswered..and the support will always be there.
If there is anything we can do, at this point..answer questions, listen..anything please feel free to call us here in Florida..call collect if you wish..or e-mail us w/ your phone # and we would be glad to get in touch..if you need and/or want.
Good luck to you and you family
Joe and Jennifer Graham (Petersburg, FL) phone: 813-381-9138 e-mail: Jenngram@aol.com ========================================================================= Date: Sat, 3 Jan 1998 22:20:10 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jenngram <Jenngram@AOL.COM> Organization: AOL (http://www.aol.com) Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Joanne,
I think you are correct in that the majority of the later surgeries are for cosmetic reasons. Our plastics guy told me that once puberty hit, and growing stopped, a lot more permanent work could be done and expect to remain as is..eye lifts, nose job..brow tinting (HA!!HA!!0 you name it it can be done..as for yourself..its never too late to go under the knife..Owie....But only if its for the right reasons..for you and only you!
Best of luck on the continuing job hunt and interview..we'll send you good vibes!!
To the Harmon family, we hope the tale is tilting a little more in Bj's favor these days..our thought continue to be with ya'll
And to everyone whose been thinking of Jordan and his impending "procedure" he sends a big toothless (but not for long..a baby tooth is peeking out..hes turning into a big boy!!) smile. And his parents send a huge heartfelt thank you!!
Have a good night Jenn ========================================================================= Date: Sat, 3 Jan 1998 23:12:58 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: MHTeach102 <MHTeach102@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Re: Hello Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Dear Bill,
First of let me say congratulations on the birth of your son. I know at this time you are having many feelings, but in time everything will work itself out. My name is Marjorie Harmon and our Oldest son Benjamin has Aperts syndrome. Like you My husband David was active duty Air Force when BJ was born. You need to know that the Air Force was able to provide BJ with current medical research. BJ was followed through the craniofacial team here at Wilford Hall Medical Center (Lackland AFB). BJ received all of his medical care there until my husband seperated from the Air Force this past year.
FYI I belive that the Military hospitals have provided the care and support necessary for BJ to reach his best potential.
I will try to write more when I have time.
Marjorie Harmon ========================================================================= Date: Sat, 3 Jan 1998 22:46:32 -0600 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Ize <ize@TACOMA.CEATLABS.OKSTATE.EDU> Subject: Hello MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Happy New year to all, and welcome to Bill, Angie and Sam.
Janine, I would like to know how do I get the pamphlet from the craniofacial association. I would appreciate if you can send me the information. Thank you.
Good luck on your job interview Joanne!
Jenn, best wishes on Jordan's surgery.
The Ize Family from Oklahoma. ========================================================================= Date: Sun, 4 Jan 1998 02:16:48 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: DnJJenner <DnJJenner@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Re: Hello Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
A Big Welcome and Hi from us in Oregon to you Murpheys!! wow you got here quick lucky you..... <smile> how exciting aa new baby.... our Courtney will be 5 in Feb. and she seems sooo big!! My husband hates when I get those "baby" feelings!! hahahaa well just wanted to wish you good will and send happy thoughts to all!!!
Dawn J ========================================================================= Date: Sun, 4 Jan 1998 02:16:49 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: DnJJenner <DnJJenner@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Re: surgeries Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
In a message dated 98-01-03 08:45:15 EST, you write:
<< Pediatric Neurosurgey >> Jenn, Dawn here Courtneys Mom, Courtney had that surgery where they pulled out her forhead and built eyebrows for her. we were told she needed this to protect her eyes, incase she fell or got hit in the face.... She did great afterwards.. after she came home she was on tylenol w/ codiene, then just reg. tylenol for a couple more days. she was great. hope all goes as well for you all. ========================================================================= Date: Sat, 4 Jan 1997 10:43:00 -0800 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Longshot & Darwin <Longshot.Darwin@MCI2000.COM> Subject: Re: Blake's Surgery In-Reply-To: <b27428ee.34a86dda@aol.com> MIME-version: 1.0 Content-type: text/plain; X-MAPIextension=.TXT; charset=US-ASCII Content-transfer-encoding: 7bit
Gaylann,
Have you thought about plastic surgeons in Nashville? That's where I had mine done. Then it wouldn't be so far from Memphis as Dallas is. Let me know if you want more infromation.
Rachel ========================================================================= Date: Sun, 4 Jan 1998 15:44:46 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> Organization: AOL (http://www.aol.com) Subject: Re: Hello Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Bill and Angie,
Congratulations and welcome to Samuel. We live in Houston now but are from Maryland and have several very good friends in Springfield. I will probably be there this summer when our son Jonathan ( 1 yr.) has his next neurosurgery. I take my daughter to stay there with my dearest friend when Jonathan has his big surgeries. It would be great if we could meet you in person then. I hope Samuel is able to come home soon. It sounds like you have directions to the main info lines (e.g., Apert News, etc.. There is a craniofacial support group out of the UK that has some excellent info. available, along with a video library as well. If you don't already have their address and would like it, please let me know. Best wishes to all of you.
Brenda, George, Melissa and Jonathan Siebert 5226 Walnut Peak Ct. Kingwood, Tx 77345 (281) 360-8573 E-mail: GSieb91515@aol.com ========================================================================= Date: Sun, 4 Jan 1998 15:44:47 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: GSieb91515 <GSieb91515@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Re: surgery reply Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Gaylann,
Good luck. Our thoughts continue to be with you and Sonya. Hope the baby is doing well.
Brenda Siebert ========================================================================= Date: Sun, 4 Jan 1998 16:10:07 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Gaylann1 <Gaylann1@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Re: Blake's Surgery Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Rachel,
Sonya and Bill have talked about Vanderbilt in Nashville. I'm not sure why they don't want to use their team. I'll ask and let you know.
Gaylann, Blake's grandmother ========================================================================= Date: Sun, 4 Jan 1998 16:42:38 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: Yonstein <Yonstein@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Re: Hello Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Dear Ize
The Children's Craniofacial Association has a toll free number, 1-800-535-3643. They are located at the national office 9441 LBJ Freeway, Suite 115, LB-46, Dallas Texas 75243-4522. They sent me some informative literature. Tell them you are interested in the Guide to Understanding Apert Syndrome by Jeffrey Fearon.
Best Wishes,
Janine ========================================================================= Date: Sun, 4 Jan 1998 16:53:02 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jim and Kelly Younkin <JimandKelly@YOUNKIN.COM> Subject: Re: Hello MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit
Welcome Bill, Angie, Samuel, and Sam's siblings too! We are Jim and Kelly Younkin. We have Jordan (8), Katie (4), and Sara (age 2 in March). Like you, Sara is our third child and the one who gave us the surprise of our lives in the delivery room. If ever there was a day I didn't think I'd get through--that was the day! But, also like you, we DID get through that day and it's just gotten better since then! The days with rounds of doctor's appointments or surgical recoveries will be exhausting, but there will be sooo many days of sunshine and happiness! Sara has had 2 cranial repair surgeries, a shunt placement surgery, and 2 sets of hand surgeries. We SHOULD be done now til she's about 4. But, through all of it, she has been the happiest little girl I've ever known, and I think that's an experience almost all of us on the list have in common. I know that you're exhausted, shocked, and almost totally overwhelmed right now but it all WILL get so much better!! Try to take care of yourselves-especially you Angie (you did just give birth about a week ago!) If you'd like to call us please feel free to do that at (717)524-0865. Take care, and again--Welcome! ========================================================================= Date: Sun, 4 Jan 1998 23:21:56 +0100 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Yngve Wallenius <wallenius@MBOX303.SWIPNET.SE> Subject: Re: Hello MIME-Version: 1.0 Content-Type: text/plain; charset=iso-8859-1 Content-Transfer-Encoding: 8bit
WCMurph wrote: > > Happy New Year to all, > > I guess I'm the new guy on the block. My name is Bill Murphey and I'm from > Springfield, Virginia. On Dec. 29th, 1997, God presented my wife, Angie, and > I with a most beautiful gift: Samuel Ryan Murphey. He was diagnosed with > Apert Syndrome and is still at Bethesda Naval Hospital. Sam is our third > child and his condition was, to say the least, quite a surprise to us. We've > been through many tears this week, but we're pressing on. > > As you all have probably done before, we're trying to gather as much > information about Aperts as we possibly can. Any good advice on where to > begin? We still have no idea when he will be able to come home with us, as he > needs to be seen by a few more specialists first. I'm on active duty in the > Air Force, so if anyone has any info regarding how the military's Exceptional > Family Member Program REALLY works that would be appreciated as well. > > We just now beginning to see the the very tip of the iceberg... > > Best of luck to all of you, > > Bill Murphey
Hi Bill and Angie
Welcome to list. Congratulations for the birth of Samuel. I Think you have come to the right place to get answers on most of your questions. When our doughter Cecilia was born 16 years ago it took us a long time to get in contact with another family who had any experince of Apert. Our iceberg melted real slowly. I think you and your family has a greater chance get some heat on your iceberg so it will melt a little bit faster.
Hej då
Yngve Wallenius ========================================================================= Date: Sun, 4 Jan 1998 17:39:50 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Mark Smith <dsprado@PENN.COM> Subject: Welcome MIME-Version: 1.0 Content-Type: multipart/alternative; boundary="----=_NextPart_000_003E_01BD1937.C2522160"
This is a multi-part message in MIME format.
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Dear Bill and Angie, Congratulations on your new arrival. Like you, Michele and I were = both on active duty when our Lil' Bit (Kayla) was born. We were also = involved in the Exceptional Family Member Program. The services = provided under that program were to say the least nothing that we were = able to gain from. We had an exceptional medical team at Walter Reed = Army Medical Center. We got reimbursed for our travel to go to and from = our home station to the hospital which was 120 miles round trip for us. = That is definately one of the few bonus's that you can get. You should = look into submitting for your travel through your unit as it is a = scheduled appointment for the child. One of the biggest benefits that you could get out of the EFMP is = that if you plan on staying in the military, when you transfer, the = military will place you as close as possible to a medical = center/hospital that has all or as many of the specalities/specalists = that you will be needing for the care and treatment of your child. This is a definate time of need. Both emotional and financial for = you. Something that most of us really do not plan for. If you need to, = there is always a chaplin available 24 hours a day. Sometimes it may = not be nothing more than someone you can unburden some of your worries = onto, sometimes more, but definately someone who you can trust to = listen to you, and possibly give you some guidance and direction as = where to turn to. Financially, there is the Red Cross. They have many more programs = available than we know about. If it is just a sitter to watch over the = other children while you are away at your appointments, or if you need = in home care for the child. The Hospital Liason (?) may be able to = provide you with a list of local agencies who can also provide you with = other help. We, Michele and I, both agree, that the military definatley = helped us financially when it came to the hospital bills, but, we all = know that there will be more than those bills down the road. Don't = hesistate to ASK FOR HELP!!! If you have to go to any appointments away from your home station = the hospital/Dr.'s office can assist you with confirming your = appointments and if needed can get you in contact with the local Ronald = McDonald house if you need a place for yourself or family to stay while = your child is being seen for appointments and or surgeries. They are = truly a great charity and resource you should look into. There is a = Ronald McDonald house right there in Washington D.C. which you should be = able to contact right thorugh your Dr's office or social workier. =20 If you feel we can be of further assistance you can email us = directly at dsprado@penn.com or send us a note through the listserve. There are a lot of people on here who have been in the same boat as = your are in now (military) and we all have a wealth of information to = share with you as well. Take care my friend, and welcome to our = family!!!
Mark, Michele, Megan, and Lil' Bit (Kayla)
------=_NextPart_000_003E_01BD1937.C2522160 Content-Type: text/html; charset="iso-8859-1" Content-Transfer-Encoding: quoted-printable
<!DOCTYPE HTML PUBLIC "-//W3C//DTD W3 HTML//EN"> <HTML> <HEAD>
<META content=3Dtext/html;charset=3Diso-8859-1 = http-equiv=3DContent-Type> <META content=3D'"MSHTML 4.72.2106.6"' name=3DGENERATOR> </HEAD> <BODY bgColor=3D#ffffff> <DIV><FONT color=3D#000000 size=3D2>Dear Bill and Angie,</FONT></DIV> <DIV><FONT color=3D#000000 size=3D2> Congratulations = on your new=20 arrival. Like you, Michele and I were both on active duty when our = Lil'=20 Bit (Kayla) was born. We were also involved in the Exceptional = Family=20 Member Program. The services provided under that program were to = say the=20 least nothing that we were able to gain from. We had an = exceptional=20 medical team at Walter Reed Army Medical Center. We got reimbursed = for our=20 travel to go to and from our home station to the hospital which was 120 = miles=20 round trip for us. That is definately one of the few bonus's that = you can=20 get. You should look into submitting for your travel through your = unit as=20 it is a scheduled appointment for the child.</FONT></DIV> <DIV><FONT color=3D#000000 size=3D2> One of the = biggest benefits=20 that you could get out of the EFMP is that if you plan on staying in the =
military, when you transfer, the military will place you as close as = possible to=20 a medical center/hospital that has all or as many of the = specalities/specalists=20 that you will be needing for the care and treatment of your = child.</FONT></DIV> <DIV><FONT color=3D#000000 size=3D2> This is a = definate time of=20 need. Both emotional and financial for you. Something that = most of=20 us really do not plan for. If you need to, there is always a = chaplin=20 available 24 hours a day. Sometimes it may not be nothing more = than=20 someone you can unburden some of your worries onto, sometimes = more, but=20 definately someone who you can trust to listen to you, and possibly give = you=20 some guidance and direction as where to turn to.</FONT></DIV> <DIV><FONT color=3D#000000 size=3D2> Financially, = there is the Red=20 Cross. They have many more programs available than we know = about. If=20 it is just a sitter to watch over the other children while you are away = at your=20 appointments, or if you need in home care for the child. The = Hospital=20 Liason (?) may be able to provide you with a list of local agencies who = can also=20 provide you with other help. We, Michele and I, both agree, that = the=20 military definatley helped us financially when it came to the hospital=20 bills, but, we all know that there will be more than those = bills=20 down the road. Don't hesistate to ASK FOR HELP!!!</FONT></DIV> <DIV><FONT color=3D#000000 size=3D2> If you have to go = to any=20 appointments away from your home station the hospital/Dr.'s office can = assist=20 you with confirming your appointments and if needed can get you in = contact with=20 the local Ronald McDonald house if you need a place for yourself or = family to=20 stay while your child is being seen for appointments and or = surgeries. =20 They are truly a great charity and resource you should look into. = There is=20 a Ronald McDonald house right there in Washington D.C. which you should = be able=20 to contact right thorugh your Dr's office or social=20 workier. </FONT></DIV> <DIV><FONT color=3D#000000 size=3D2> If you feel we = can be of=20 further assistance you can email us directly at <A=20 href=3D"mailto:dsprado@penn.com">dsprado@penn.com</A> or send us a note = through=20 the listserve.</FONT></DIV> <DIV><FONT color=3D#000000 size=3D2> There are a lot = of people on=20 here who have been in the same boat as your are in now (military) and we = all=20 have a wealth of information to share with you as well. Take care = my=20 friend, and welcome to our family!!!</FONT></DIV> <DIV><FONT color=3D#000000 size=3D2></FONT> </DIV> <DIV><FONT color=3D#000000 size=3D2>Mark, Michele, Megan, and Lil' Bit=20 (Kayla)</FONT></DIV></BODY></HTML>
------=_NextPart_000_003E_01BD1937.C2522160-- ========================================================================= Date: Sun, 4 Jan 1998 18:39:56 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: ETolson643 <ETolson643@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Re: Hello from Boston Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Bill, Angie and family Welcome to this list...you will find it most helpful!!! Our son Tim, who is now 16 years old, was also a surprise to us. We have two other children, a daughter who is 18 and a son who is 8. I can remember clearly how confusing and difficult those first few months were. Tim has turned out to be such a great kid and a wonderful addition to our family. The disabilities are now secondary to his wonderful personality and spunk!!! In time, all of the pieces will fit. Hang in there. Tim is one of 30 grandchildren and the life of every family gathering.
Beth Tolson ========================================================================= Date: Sun, 4 Jan 1998 18:54:43 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: GSieb91515 <GSieb91515@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Re: Hello Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Julia,
I wish my mom could have the same encouraging outlook as you do. Unfortunately, she lives about 1800 miles away so that doesn't help. She loves Jonathan very much but always seems so sad. She hasn't been the same since he was born a year ago. It would also be great if she had access to this group as I know she would have happier feelings. She says she feels sad for what I have to go through and hurts for me. I continue to tell her what a blessing Jonathan is and how happy we are even though things aren't quite "normal". I look forward to sharing your notes with her.
Brenda Houston ========================================================================= Date: Sun, 4 Jan 1998 19:48:48 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: GSieb91515 <GSieb91515@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Re: CT and Sleep Study Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Marianne,
I am just catching up on mail for the past month and read about Evan's surgery (now post). Hope everything went well. Best Wishes for the new year.
Brenda Houston ========================================================================= Date: Sun, 4 Jan 1998 20:04:55 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: GSieb91515 <GSieb91515@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Re: Hello to all Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Rachel,
Welcome and Happy New Year. We are the Sieberts--George, Brenda, Melissa and Jonathan. Jonathan was born 1 year ago and has undergone 2 surgeries to date. His next one is scheduled for Feb. 23. It will be to release his index finger on the left hand. We have decided not to do both hands at once. We fought like the dickens trying to keep him in bandages when his pinkies were released last Oct. He is even more mobile now and I don't know if we can handle two hands at once. Any comments or suggestions from anyone regarding doing 1 or 2 hands at once are welcomed. Rachel, we look forward to sharing with you.
Brenda Siebert Houston E-mail: GSieb91515@aol.com ========================================================================= Date: Sun, 4 Jan 1998 20:30:02 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: TFinch10 <TFinch10@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Re: Hello Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Dear Bill and family, Welcome to the ListServ. If this had existed seven years ago when our son Nate was born with Apert's syndrome, this would have been the first places to which we would have wanted to turn. Information was what my husband and I and our extended families wanted and needed to help us cope with the unexpected. I often speak about this Listserv as a powerful example of the great uses to which the Internet can be put. Everyone needs something different to help cope, especially in the raw first weeks and months, when the challenges that a craniofacial syndrome can bring may seem formidable. But what I needed most in the first days of Nate's life were messages of hope. Other sources will detail the surgeries, the many things that may go wrong in your son's life but I want to share the joy that our child has brought us and all of the things that he can do. Nate is a ray of sunshine. He has a persistence, a never-give-up attitude that his older sibling-- to whom things come more easily --lacks. By watching him overcome obstacles, all who know him have been changed forever. If Nate wants to play tennis, so what if his fingers can't bend around the grip of the racket? Nothing is impossible. He has shown us that the only crime is not to try. He looks "different" but only at first glance and by those who do not know him. To those who know and love him, he looks...like Nate. When Nate was first born, we found parents in our area who also had kids with the same syndrome. To a person, they all said the same thing: He will be a great kid. So I pass that to your family--Yours too will be a great kid. Best wishes, Jeanne, Nate's mom in Boston ========================================================================= Date: Sun, 4 Jan 1998 21:01:25 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: JKram511 <JKram511@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Re: Hello Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Brenda-
It must be hard for your mom to be so far away. I think there are several reasons why I have the outlook I do. First, I was able to visit and stay for long periods of time with Jeanne and her family during the first few years of numerous surgeries for Nathaniel, and during that time I learned again (as I had when my children were growing up) that no parent can protect a child from being hurt, or sad or upset. It was Jeanne and Ted's job to shepherd their own child through his hurts, and it was my job to support them in any way I could--which, in my case was, among other things, scrubbing the kitchen floor! And organizing the far flung relatives and friends to make a quilt for Nathaniel. None of us had ever sewed very much, but each took a square depicting a month of the year and my sister stitched the things together and the quilt was presented to Nate when he was two years old. Second, a not "normal" child was not unfarmiliar to me as I had a sister who was born without a hip socket and knee and has had a prothesis most of her life as well as surgeries. I had seen my sister grow into a adult with a full life, a career, friends , children and grandchildren.
Please tell your Mom that our family's journey these last seven years with Nathaniel has brought us closer together and has strengthened us all as individuals and as a family. Going through tough times together is a great bond. And in the center of it all is a happy, joyful seven year old. I can't imagine what our life would have been without him to teach us about what is important.
Please share this note with your Mom. Does she have a computer? I do think this group is wonderful and so life affirming!
Julia
P.S. And congratulations to Bill and Angie and a big welcome to Samuel. Nathaniel's name means "God's gift" and he has indeed been that for all of his extended family and friends. Samuel will be also.
Julia ========================================================================= Date: Sun, 4 Jan 1998 21:44:19 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Camous <Camous@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Hands- bilateral or not Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Brenda, Thanks for asking about our most recent surgical adventure. All went well- they also stanted his nose "while they were there" and I just can't wait to get those little orange tubes out. I remember Robyn's descriptions of this with Brenna- at least we haven't had the cleaning rituals as he breathes with his trach and they don't need to be kept clear for that. But UGH!! His previously "attractive" party trick of having milk come out his nose when dringing has gotten aan easier route. Now liquids pour out, and even solids like cheese find their way through. In time this, too will pass!!
Evan had his thumbs free from the "get-go" and the rest of his fingers all webbed. His releases were done in only two surgeries- The first separated the 2nd and 4th web spaces bilaterally, then the second did the remaining middle web space bilaterally. I agree that it's a royal pain in the *** to keep the bulky dressings/splints on both hands, I really appreciate the fact that it kept the number of procedures/anesthetics/trips to the hospital to a minimum. He will still need osteotomies to straighten his thumbs and rotate an index finger but I am hoping he will have a year or so without surgeries first. I have seen kids who have undergone numerous procedures to accomplish the same ends. Our hand surgeon in Pittsburgh, Dr Michael Bentz, stated that he prefers to only perform bilateral procedures until the child is about a year-1 1/2 as they use their hands so much after that. In Evan's case, he was delayed by his head surgeries, shunt, shunt infection, etc. I guess my outlook is skewed by having dealt with hospital-aquired infections, a post-op respiratory arrest, etc. At this point, my goal is always to do ANYTHING to reduce the number of anesthetics and hospitalizations! The trick is to keep him occupied and amused as much as possible while the dressings are on- round up the siblings, friends, videos, etc. You'll be amazed at what they can do with splints, etc on!
I can't believe Jonathan is a year old!!!! Seems like such a short time ago we were welcoming y'all to the group!! Evan's now 18 months- it certainly has been an eventful year for us. At this time last year we had gotten pretty comfortable with the trach and were getting ready for his first cranial surgery!! How far we've come!
Hang in there- hands are easier!!!
Marianne ========================================================================= Date: Sun, 4 Jan 1998 21:55:13 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Camous <Camous@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Welcome Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
I'll add another set of voices to the chorus of "welcome's" to the Murpheys. Thsi is truly a wonderful group of friends!! Our son, Evan is 18 months old and the happiest, sweetest kid. He is our third, with two older sisters (ages 6 and 4) who spoil him. He's had a tough time of it- more cranial involvement and less hand involvement so he has a tracheostomy, a shunt for hydrocephalus and has a tough year- (7 sugeries, ~60 hospital days, etc) Through it all he has proved to be tough, sweet and loving. Quite a fighter! These kids teach you so much about life, love, priorities, family, the health care system and most of all yourself. Strap yourself in for quite a ride- scary at times, exhilarating at others- but worth it all!
Welcome aboard!!
Marianne Camous, Dave Milburn , Sarah, Kate, and Evan ========================================================================= Date: Sun, 4 Jan 1998 20:49:46 -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: Evan - stents Mime-Version: 1.0 Content-Type: text/enriched; charset="iso-8859-1" Content-Transfer-Encoding: quoted-printable
Hi Marianne,
I am glad to hear that things are going well with your little trooper!=20 How's the unpacking going? I am glad to hear you like the facilities at Stanford. It is a possibility for us for the future since we live about half way between Seattle and SF. Just out of curiosity, if you don't mind, do you know why they stented Evans nose if he is still using the trach? Is it to remove or manipulate the tissue in his nose for the future? After Brenna's last go with stents, when they removed them, the openings in her nasal passages were a lot clearer. Unfortunately she has caught that perpetual winter "Yuck" where her nose is constantly draining, so she has been fairly plugged up again. I am beginning to get concerned as it has been going on for a while. She once again is having a tough time at nights. It seems as if every time we get her breathing almost clearly she catches a darned cold! At least we have PT tubes for her ears this year - Thank goodness!!! I am wondering if the T & A (tonsils and adenoids) removal is just around the corner. The ENT on Seattle said as she develops they will get larger - probably this year.=20 Uggghh! I was hoping to have a surgery free year! I am <underline>really hoping</underline> it is just a cold, but we will see an ENT next month just to be sure. Hang in there with those stents.=20 Thank goodness they are short term. =20
Robyn & the Plum,
Eugene, OR
p.s. we are still living out of boxes too! In transition from selling our house, currently housesitting while we are renovating our new house - should hopefully be done by summer. =20
p.p.s. Welcome to all of the new people on the list. I know there has been a few lately. It is a wonderful list with excellent support in many, many ways. I hope you all enjoy this list as much as we do. It is a valuable resource!!!
At 09:44 PM 1/4/98 EST, you wrote:
>Brenda,
>Thanks for asking about our most recent surgical adventure. All went well-
>they also stanted his nose "while they were there" and I just can't wait to
>get those little orange tubes out. I remember Robyn's descriptions of this
>with Brenna- at least we haven't had the cleaning rituals as he breathes with
>his trach and they don't need to be kept clear for that. But UGH!! His
>previously "attractive" party trick of having milk come out his nose when
>dringing has gotten aan easier route. Now liquids pour out, and even solids
>like cheese find their way through. In time this, too will pass!! ========================================================================= Date: Mon, 5 Jan 1998 08:43:24 -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: HELP!!!! MIME-Version: 1.0 Content-Type: text/plain
Sure, Janine - from now on you will always be able to get to Teeter's Page at www.apert.org no matter where the page is actually hosted.
Don ========================================================================= Date: Mon, 5 Jan 1998 09:21:57 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> Organization: AOL (http://www.aol.com) Subject: Re: HELP!!!! Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Has anyone had trouble getting into Teeters page? It seems to be a different web site at the same address? Just wondering if it was just me.
Jenn ========================================================================= Date: Mon, 5 Jan 1998 09:42:15 -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: HELP!!!! MIME-Version: 1.0 Content-Type: text/plain
Sorry, This was my fault! Anyone who got "The Suzuki LJ20 Page" inadvertantly got a look at a page which is under development by me, and accidently got posted to Teeter's Page instead, replacing it. The problem has now been fixed. Thanks, Jenn, for the heads-up!
> ---------- > From: Jenngram > Sent: Monday, January 05, 1998 9:21 AM > To: APERT@LISTSERV.AOL.COM > Subject: Re: HELP!!!! > > Has anyone had trouble getting into Teeters page? It seems to be a > different > web site at the same address? Just wondering if it was just me. > > Jenn > ========================================================================= Date: Mon, 5 Jan 1998 10:54:18 -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: Don Sears <dsears@SCRS.STATE.SC.US> Subject: Teeter's Page counter MIME-Version: 1.0 Content-Type: text/plain
Does anyone recall approximately how many hits the counter on Teeter's page showed near the end of the year? Thanks, Don ========================================================================= Date: Mon, 5 Jan 1998 16:39:25 -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: Update, and a question for you all MIME-Version: 1.0 Content-Type: text/plain
The listserv archives on Teeter's Page have been updated through the end of 1997. You can see these at www.apert.org/archives.htm.
Does anyone out there have a Quickcam or other live camera attached to their computer? I got Cat 2 of them for Christmas, one for her and one for her identical cousin in North Carolina. I figure it will take about 2 months to pay for themselves. Also Teeter will be able to see her cousins and whe'll love that. We'd love to connect with any of you who have this ability.
It's really not that expensive - we got the color camera and bundled software (Quickcam VC) for about $110 each.
Don ========================================================================= Date: Mon, 5 Jan 1998 15:46:43 -0600 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Carol <cddg@BELLSOUTH.NET> Organization: Home Subject: teachers MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
A few months ago there was a teacher of an Aperts child on the listserv wanting to contact other teachers.. does anyone have that name or email address? Nick's teacher would love to email with other teachers and I had told her about the other teacher, but we lost the email address....
Carol Graves ========================================================================= Date: Mon, 5 Jan 1998 14:22:33 -0800 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "Christine L. Clark" <apertnet@IX.NETCOM.COM> Organization: Apert Support & Information Network Subject: Re: Surgery again MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Gaylann1 wrote:
> Sonya and Bill went to Dallas and met with several doctors. Memphis does not > have a team and that is our biggest concern. Well....Memphis has a team > formed after Blake was born. We don't think there is enough experience here.
Have you looked into the Tennessee Craniofacial Center in Chattanooga? They have a great reputation. Try calling Teri Farmer there at (615) 778-9192 if it may help you out.
Good Luck!!
Christine Clark Apert Support & Information Network ========================================================================= Date: Mon, 5 Jan 1998 19:22:20 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: MHTeach102 <MHTeach102@AOL.COM> Organization: AOL (http://www.aol.com) Subject: BJ's Story Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Don, decided to do it this way or I will never get it done.
BJ Harmon (Benjamin) was born on January 16, 1987 at Tinker AFB in Oklahoma City. He is the oldest of 4 children. 2 brothers Josh, Jacob and 1 sister Katie. BJ has known trouble from the time he was born. He was born 9 weeks early and seemed to fight for life from the get go. When he was just a few hours old they air vaced him to Wilford Hall Medical Center in San Antonio Texas. He spent 56 days in NICU before we were allowed to bring him home.
While he was still in the hospital, David was transfered to Kelly AFB also in San Antonio. But despite all the problems he had he was the most beautiful baby we had ever seen. He had my blue eyes and his dads temper (He hated having clothes on). Despite all our fears and anger, we knew we were blessed. BJ seemed to be like any other baby and we did our best to treat him like a regular baby.
BJ had his first craniotomy at only 3 months of age. (I could never have forseen all the surgeries that were to come). He was such a trooper he only spent 2 days in ICU and was home just 5 days later. I was amazed to see how fast BJ developed, he seemed to reach all his milestones at the right time. At age 7 months they had to redo his craniotomy. BJ he still rebounded just as quickly.
It seems that we were finally starting to come into our own as parents of Apert's child. We were no longer frightened by the doctors, and could speak medical ease with the best of them. David and I knew our way around that hospital in our sleep. By this time our anger had began to subside and began to plan for the rest of our lives.
BJ continued to grow and change like any baby, and we grew in our parenting capabilities. When BJ was around 18 months old we noticed that BJ wasn't talking or making any of the normal baby sounds. The doctors checked him out and discovered that BJ's ear canal was malformed and they told us that Bj was mostly deaf. The doctors told us that there wasn't much that they could do about that.
David and I however were not willing to accept that and took BJ to every ENT specialist in the city. Finally we found a doctor that was willing to attempt to reconstruct his ear canals. BJ had that surgery when he was 21 months old. The surgery was a remarkable success and BJ was able to improve his hearing to near normal limits.
From the age of 7 months to age 5 BJ had seperation of his fingers (1 finger at a time) 1 orbital rim advancement, and a cleft palate repair, a hernia repair, and several operations repair a congetial heart deffect. They also attempted to realign his ankels but were unable to. So to say the least Bj was no stranger to the hospital or the OR.
When BJ was only 3 1/2 David and I made the decision to seperate from the Air Force. David wanted to try hishand at Ranching and his Grand Father had recently died and left us some land. We knew it would take some time so David joined the San Antonio Fire Department while we built the house. Things seemed to be going great and we had just moved in when we had our first big test.
BJ began to have seizures.( at age 4) It took the doctors several weeks to determine that BJ had hydrocephlus and would need a shunt. BJ had 3 shunt surgeries and rejections before they finally got one to take.
Don I am sorry but I will need to finish this another time. This is harder than I thought it would be.
Marjorie ========================================================================= Date: Mon, 5 Jan 1998 17:17:45 -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: "Christine L. Clark" <apertnet@IX.NETCOM.COM> Organization: Apert Support & Information Network Subject: APERT SUPPORT & INFORMATION NETWORK Comments: To: WCMurph@AOL.COM, Longshot.Darwin@MCI2000.COM, goddess@CAPITAL.NET, carolh@HOTKEY.NET.AU MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Greetings to all new families,
I periodically post this information to help new families get more information on Apert Syndrome.
I am the mother of a beautiful 7 year old daughter, Michelle, with Apert Syndrome. She is a complete joy to us! I started this organization in 1995 for 4 families and now have a mailing list of over 220 families and professionals in the United States and several other countries. Anyone facing the challenge of Apert is encouraged to sign up to the mailing list for my newsletter, APERT NEWS. I will mail to any country, and relatives (i.e., grandparents, etc) are welcome to sign up, too. There are many tips, stories from individuals (including adults with Apert) and pictures.
If interested, families and individuals with Apert may also sign up to a networking list so they can contact others by mail, phone or e-mail (if available).
There is no cost but I do ask for donations to help cover expenses if you are able. All this information plus a resource list and other items of interest will be included in a packet you will receive after you sign up. To do so, contact me at:
Apert Support & Information Network P. O. Box 1184 Fair Oaks, CA 95628 USA (916) 961-1092 (phone + fax) apertnet@ix.netcom.com
Hope to have you join!!
Christine Clark ========================================================================= Date: Mon, 5 Jan 1998 20:39:04 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> Organization: AOL (http://www.aol.com) Subject: Re: Hello Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Julia,
Thanks so much for the encouraging note. I know my mom will appreciate your thoughts and I know how much she wishes she were closer. George informed me that she only lives 1100 miles away not 1800. Oh well, when your that far already, the extra 700 doesn't really seem to matter. Unfortunately, my mom has to still work and therefore can't spend the time with us during surgeries, recuperation, etc. I'm hoping that situation will change soon. Anyway, THANKS.
Brenda ========================================================================= Date: Mon, 5 Jan 1998 21:15:28 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: GSieb91515 <GSieb91515@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Re: Hands- bilateral or not Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Marianne,
Wow, I can't believe you only had to have 2 surgeries for Evan's hands. That's great. Unfortunatly, we're not sure exactly what Jonathan's situation is until they go in to separate his index finger. The three mid fingers are all fused at the tips, so I'm not sure what we'll end up with. Jonathan's surgeon has said he will get 5 individual fingers that function. That's a pretty big statement, so I'm sitting back on this one. I too would like to minimize the amount of surgeries if at all possible. However, I don't want to set Jonathan back since he is so mobile right now. He is just on the verge of walking and really getting around quite well. I am still working full time so that doesn't help the bandage situation. I'll take the first week off, but after he' s feeling good I have to get back. He has a nanny that speaks mostly Spanish. I am not bilingual at all so there is a communication barrier at times. I am working on changing this situation as soon as I can. All of our family are out of state so that's no help. Anyway, I'm sure we can manage the bandages on both hands if that's the best thing to do for Jonathan. His surgeon does recommend doing both but said he can do them separate within a couple of weeks after healing and it would not be a problem with the anesthesia. However, we all know to well how wrong they can be. I guess we'll have to go on our gut with this one. Thanks for the advise and good luck with Evan's stents.
Brenda ========================================================================= Date: Mon, 5 Jan 1998 18:22:40 -0800 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "Christine L. Clark" <apertnet@IX.NETCOM.COM> Organization: Apert Support & Information Network Subject: Re: Clinics in Plastic Surgery MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Yonstein wrote:
> Christine, thank you for the back issues of Apert News. Do you have any info > on getting the Clinics in Plastic Surgery book. I read in your newsletter > that it went out of publication five years after. It sounds like it would be > very helpful to have since I cannot find anything relating specifically to > Aperts.
The only way to get a copy is if a medical bookstore still has a copy on their shelves (probably unlikely by now). Otherwise, get to a medical library to see an issue or ask your plastic surgeon if they have it in their office or at the craniofacial clinic. Hopefully, Don will get the author's permission soon so he can add it all to Teeter's Page. A warning though, some of the pictures are very graphic (those of us with medical backgrounds can stomach it a little better, hah) and not all issues pertain to all individuals with Apert.
Have you contacted AboutFace and Children's Craniofacial Association for their pamphlets on Apert yet? They have some information, too.
Good luck on your search. It is a very informative book.
All my best,
Christine ========================================================================= Date: Mon, 5 Jan 1998 21:50:37 +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>
Sending my love and prayers to the Harmon Family.
Joanne, in Ohio ========================================================================= Date: Mon, 5 Jan 1998 21:46:36 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Mark Smith <dsprado@PENN.COM> Subject: Re: Hand surgeries MIME-Version: 1.0 Content-Type: multipart/alternative; boundary="----=_NextPart_000_0026_01BD1A23.65552BA0"
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Hello:
Just my input in on hand surgeries, I had Kayla done one hand at a time = only because if she had both hands done at the same time what would she = use to play with, and or eat with, and so on. I felt hand surgery were = a lot less stressful than the big head surgery even though all surgeries = are stressful to me.=20
Trying to keep the hand dry, clean and everything was hard enough with = just one hand. Plus I found it wasn't a good idea to do it when it is = cold out because with all the bandages it made it hard for her to push = her hand though her jacket sleeve or a long sleeve shirt. =20 This is just my personal feeling. One more thing ....skin graph on both = side of the groin at once yak. .
Michele
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<!DOCTYPE HTML PUBLIC "-//W3C//DTD W3 HTML//EN"> <HTML> <HEAD>
<META content=3Dtext/html;charset=3Diso-8859-1 = http-equiv=3DContent-Type> <META content=3D'"MSHTML 4.72.2106.6"' name=3DGENERATOR> </HEAD> <BODY bgColor=3D#ffffff> <DIV><FONT color=3D#000000 size=3D2>Hello:</FONT></DIV> <DIV><FONT color=3D#000000 size=3D2></FONT> </DIV> <DIV><FONT color=3D#000000 size=3D2>Just my input in on hand = surgeries, I had=20 Kayla done one hand at a time only because if she had both hands done at = the=20 same time what would she use to play with, and or eat with, and so =
on. I felt hand surgery were a lot less stressful than the big = head=20 surgery even though all surgeries are stressful to me. </FONT></DIV> <DIV><FONT color=3D#000000 size=3D2></FONT> </DIV> <DIV><FONT color=3D#000000 size=3D2>Trying to keep the hand dry, clean = and=20 everything was hard enough with just one hand. Plus I found it = wasn't a=20 good idea to do it when it is cold out because with all the bandages it = made it=20 hard for her to push her hand though her jacket sleeve or a long = sleeve=20 shirt.</FONT></DIV> <DIV><FONT color=3D#000000 size=3D2> </FONT></DIV> <DIV><FONT color=3D#000000 size=3D2>This is just my personal = feeling. One more=20 thing ....skin graph on both side of the groin at once yak. =20 .</FONT></DIV> <DIV><FONT color=3D#000000 size=3D2></FONT> </DIV> <DIV> </DIV> <DIV><FONT color=3D#000000 size=3D2>Michele</FONT></DIV> <DIV><FONT color=3D#000000 size=3D2></FONT> </DIV> <DIV><FONT color=3D#000000 size=3D2></FONT> </DIV></BODY></HTML>
------=_NextPart_000_0026_01BD1A23.65552BA0-- ========================================================================= Date: Mon, 5 Jan 1998 22:13:42 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: MHTeach102 <MHTeach102@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Don I need a favor Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
This week David and I have been trying our best to catalog this whole chain of events. We decided to print out the archives of the listserve and add them to BJ's journal. The problem is for some reason I cannot get Log9708e to come up. I was wondering if you could possibly email me a copy of this log. If not I understand. Thanks in advance.
Marjorie ========================================================================= Date: Mon, 5 Jan 1998 22:34:36 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Camous <Camous@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Re: Hands- bilateral or not Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
In a message dated 98-01-05 21:22:39 EST, you write:
<< He has a nanny that speaks mostly Spanish. I am not bilingual at all so there is a communication barrier at times. >> What might be useful is to see if she can come to the hospital and receive instructions on wound care in Spanish. I'm sure your hospital has nurses or health educators who could accomplish that. At first, they usually have "bulky dressings" which are made up of a splint of some sort and lots of gauze with an "ace" wrap over the top. That generally stays on for a week or two (or until it falls off;) After that, you may have to do soaks and/or dressing changes with xeroform gauze or some other non-adherent dressing and gauze for a ========================================================================= Date: Mon, 5 Jan 1998 22:44:59 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Camous <Camous@AOL.COM> Organization: AOL (http://www.aol.com) Subject: oops- hit the send key by accident- Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Brenda- to finish my thought- << He has a nanny that speaks mostly Spanish. I am not bilingual at all so there is a communication barrier at times. >> What might be useful is to see if she can come to the hospital and receive instructions on wound care in Spanish. I'm sure your hospital has nurses or health educators who could accomplish that. At first, they usually have "bulky dressings" which are made up of a splint of some sort and lots of gauze with an "ace" wrap over the top. That generally stays on for a week or two (or until it falls off;) After that, you may have to do soaks and/or dressing changes with xeroform gauze or some other non-adherent dressing and gauze for a week or two until healing is complete. Everyone has their own slant to the regimen but that is pretty standard. Maybe this will help you plan your time off efficiently. Your surgeon and/or his office staff should be able to give you the drill in advance-if so, ask what supplies you will need if your insurance covers it. It took us so long to get them sent that we were done by the time they sent them to us and they were the wrong things. Luckily, I had a ready supply from the lab I taught!!
Hand surgeons also will pretty generally give the caveat that the final decision will be made in the operating room. Often you can't tell until then exactly what you have for soft tissue there- X-rays only show the bones and are still fairly indistinct on such small fingers with so much cartilage.
Hope this helps!- Good luck! This is usually MUCH easier than the cranial surgeries!!
Marianne ========================================================================= Date: Mon, 5 Jan 1998 22:50:44 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Camous <Camous@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Re: Hand surgeries Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
In a message dated 98-01-05 21:49:08 EST, you write:
<< Plus I found it wasn't a good idea to do it when it is cold out because with all the bandages it made it hard for her to push her hand though her jacket sleeve or a long sleeve shirt. >> Yes, but in the heat of summer the odor of those bulkies gets pretty overpowering sfter a few days!!
<<One more thing ....skin graph on both side of the groin at once yak. .>> Evan had only one incision from the skin grafts- a pfannen-steil or "bikini" incision across the groin. Supposed to be "invisible" eventually. I personally though the wrong one of us got the "tummy tuck"! And couldn't believe the general surgeons had to make a separate incision for his bilateral hernia repairs- now his belly looks like a smile drawn by a kid before they have the spatial relationships right!!
Marianne ========================================================================= Date: Mon, 5 Jan 1998 22:53:28 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: MHTeach102 <MHTeach102@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Re: In This Day Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
"In this day..."
I choose living not just for the sake of passing time.
I choose to take advantage of the milli-seconds between my breath and my sigh.
In this day I will grasp hold of the moments I lost so many times before as harsh words rolled off my tongue penetrating the ears and hearts of those whom I wanted to hurt and did.
In this day I will make up for time lost by living between my thoughts and my actions. I will live up to my potential which, through God's Grace is unlimited.
In this day I will help someone else find the greatest gift of all-himself. While we spend our lives in pursuit of success and happiness, we have within ourselves all that we will ever need from the moment of conception until our last breath.
In this day I will acknowledge that I am a magnificent creation capable of the greatest accomplishments. I am one of a kind. Never before in the history of human existence and never again will there be another me. I have a purpose, a mission, and with that a responsibility to fulfill my goals. The key to success is in "knowing" and "believing" that I can, then purposefully taking action. The "knowing" is the small voice you hear deep within that gives direction. It sparks the dreams and softens the indignant blows that life throws at us. It is the spirit of our being connected to the Great Power. It never goes away, although many spend a lifetime trying to block it out. "Believing" comes once we have accepted that self esteem is not an ego trip but a verification that you are a living miracle created by God. Although we are all capable of grand accomplishments that can change the world, we can all succeed at various levels none less important than the next. Some listen more intently to the inner voice and act upon their beliefs. Others cautiously follow, taking life step by step. Even those who do not heed the call serve a purpose. They often serve as the best friend, the parent, the neighbor, who ignites the spark in others bound for greater goals.
In this day I will celebrate as if it was my birthday and 24 hours was my gift. I will treasure the sunrise, and save the light in my hand for darkened days. I will fill my lungs to capacity with the sweet smell of life and consume the colors that surround me like a meal fit for a king. I will taste the reds and yellows of the flowers, and bathe in the blues and greens of the sky and grass. At the end of the day, in the darkest hours, my soul will light the way to rest in the satisfaction of knowing I did not waste a morsel.
Then on my last day on this earth I will leave filled with joy to a better place, knowing that I have served my purpose and completed my mission. I will leave behind my energy that will disperse into every rock, tree and molecule. I will become a part of the color, the light, the breath of life for others to consume. I will not wither to the ground as a failure, and serve as a pathway. I will rise with the sun to bring joy forever to those who will dream after me.
I am important.
I am successful.
I am God's creation!
I am alive!
"I believe in YOU!"
Robert Perks Email motivate@tl.infi.net
Feel free to copy and distribute. I only ask that you credit the author and note how I can be reached.
Copyright 1997 Robert C. Perks ISBN # 0-9657935-2-4 Sparrow Publishing 88 North Pioneer Ave. Shavertown, Pa. 18708-1024 USA Fax 717-696-1310 ========================================================================= Date: Mon, 5 Jan 1998 23:08:52 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "cynthia f. blodgett" <blodgett@PENN.COM> Subject: Re: teachers MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Carol wrote: > > A few months ago there was a teacher of an Aperts child on the listserv > wanting to contact other teachers.. does anyone have that name or email > address? Nick's teacher would love to email with other teachers and I > had told her about the other teacher, but we lost the email address.... > > Carol Graves You found me Carol! My name is Cindy Blodgett-- I teach first grade and have an Aperts student in my class. My e-mail address is: blodgett@penn.com I would welcome any communication with other teachers. Thanks! Cindy ========================================================================= Date: Tue, 6 Jan 1998 07:56:50 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: Jenngram <Jenngram@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Re: Good morning to all Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Morning to everyone. Hope your day is starting off prettier than here in South Florida..rainy, muggy, and just gross. I could hardly stand to take poor Alex out for his morning potty.
Anyway, a few days ago I replied to one of Joanne's e-mails and in it I discussed the Pediatric Neurosurgery homepage..well Here is the URL for it...http://cpmcnet.Columbia.edu/dept/nsgIPNS. Its pretty hard to find, what with some millions of sites to sift through. Sorry about that. Its a great page..Again done by Dr. Neil Feldstein. Hes done great descriptions and graphics of the skull/plates/sutures...check it out if you have time!
Also, JOrdan and I went to see our Developmental Dr. It basically went well..except he was a true grump (baby refuses to nap so he crashes and burns around 3, usually after a fit od hysteria..our appt. was at 2:45..neep I say more??) anyway, they approved him for OT and for a homebound teacher to come 1 x wk..probablly to satisfy our concern that we needed to be doing something to get him going..which it did. They also gave me a place to go that would give us listings of daycares use to dealing w/ kids w/ special needs. This may allow me to get back to work..which I desperatly need and want to do, at least part-time. If I can only feel comfortable w/ them..I don't have a lot of that when it comes to child care providers, but we're going to interview them and see.
So all in all it went well and it seeems the ball will get going, which makes Joe and I feel better at least. Oh, FYI..Jordan discovered his feet last night..he won't stop holding the left one up....trying to reach it..and carrying on some sort of i-way converstion w/ it. We had to convince him that it would be there everyday so he would go to sleep. Sure enough I went in this morning and there that left foot was up in his face again. We got a good laugh out of it..which was a nice change from all of the recent worrying in this house regarding pending surgeries!!
Good luck w/ those hand surgeries..a road we will be on in the next few months..sounds like a messy time!!
To the Harmon family; ya'll continue to be in our thoughts and we pray for your continued strength
Have a good one Jenn ========================================================================= Date: Tue, 6 Jan 1998 08:04:13 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Christopher Kilner <Christopher.Kilner@USPTO.GOV> Subject: Re: Good morning to all MIME-Version: 1.0 Content-Type: text/plain; charset="us-ascii" Content-Transfer-Encoding: 7bit
Jenn,
You had 1 typo: a l that should be a /. The address is http://cpmcnet.Columbia.edu/dept/nsg/PNS/
Chris
> ========================================================================= Date: Tue, 6 Jan 1998 08:04:39 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jenngram <Jenngram@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Re: oops Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Since these URLs are so specific..I mad a boo0-boo on that Peds. Neuro address:
http://cpmcnet.Columbia.edu/dept/nsg/PNS
another good site to check out just for fun is www.eparent.com..or use keyword: pedinet
Just some fun in all of our spare time!!! Yea Right!!
Sorry fo the mistake
Jenn ========================================================================= Date: Tue, 6 Jan 1998 08:06:20 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jenngram <Jenngram@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Re: Good morning to all Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Chris, man you are on the ball!!!! I think we caught it at the same time!
Thanks for catching it as well
Jenn ========================================================================= Date: Tue, 6 Jan 1998 08:12:53 -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: Craniofacial Surgery book online MIME-Version: 1.0 Content-Type: text/plain; charset="us-ascii" Content-Transfer-Encoding: 7bit
For those looking for a text on surgery, I found a basic text online at http://www.erlanger.org./cranio/book.html ========================================================================= Date: Tue, 6 Jan 1998 08:47:04 -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: Dori Jefferson <djeff@MIDWEST.NET> Subject: Re: teachers MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit
Cindy: Did Seth's teacher, Wanda Greer, contact you. I gave her your E-mail address several month's ago? Just wondering.
Dori A. Jefferson djeff@midwest.net ========================================================================= Date: Tue, 6 Jan 1998 07:20:10 -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! 01/06/98 MIME-Version: 1.0 Content-Type: TEXT/PLAIN; charset=US-ASCII
Hi everyone!!!
Tonite is ApertCrouzon Chat Nite!! So let's get acquainted with each others. :-) Keep in mind that some people will show up alittle later than the time started. Stay as long as you like.
*NOTE* - I'll be late tonite due to I teach young adult bible study class. I'll be around probably at 8:30pm or 9:00pm (PST-Seattle time).
Date To Meet On: Tuesday, January 6, 1998
IRC Server: ChatNet (Any locations)
Port Setting: 6667
Channel: #ApertCrouzon
Time: 10:00 PM ET/9:00 PM CT/8:00 PM MT/7:00 PM PT/5:00 PM HT
In case you haven't had a chance to download the mIRC for Windows 3.x and 95 or IRCle for MAC users. Please go to download from one of these below. Be sure to follow the instructions on how to install it and the setup. Be sure to set the Port setting and add by typing the channel name called exactly like this: #ApertCrouzon .
To check out the mIRC Help Page for Windows 3.x and Windows 95 users at: http://people.delphi.com/kbranstetter/mirc1.html You can download mIRC 5.11 there.
For MAC Users: Please download IRCle at: http://www.amug.org/~ircle/
If anyone needs help or have questions on accessing the chat on ChatNet. please email to Kristi at either:
mailto:kristib@qni.com or mailto:kbranstetter@delphi.com
Or for a quicker assistance, you can reach Kristi on AOL IM (AOL Instant Messenger) and she will be available to assist you - see below:
Kristi's screen-name: LilOneB (anytimes)
You can download the AOL IM (AOL Instant Messenger) at: http://www.aol.com/aim
You don't have to be a member to join AOL IM and it is free! AOL IM is an one to one online chat.
Everyone is welcome!!!
Thanks and please join the fun!!!!
Hugs, Penny
http://www.earthlink.net/~hwy2heaven/
mailto:hwy2heaven@earthlink.net mailto:phalvers@u.washington.edu ========================================================================= Date: Tue, 6 Jan 1998 10:50:09 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Joanne Lindamood <chanan8@JUNO.COM>
Hello!
It's a foggy, dreary day here in Ohio. Fog is so thick I could not see the city even as I was in the middle of it! YUCK! Our building has a malfunctioning, unpredictable boiler with a mind of it's own. We froze yesterday, and are burning up today! I wore warmer clothes, trying to adapt to yesterday's problem and since it is the middle of winter here, and we are supposed to be cold! Now I'm ready to shed a layer or two!
Hey Jenn, glad to hear you are getting some assistance and will be going back to work!
I have another question to send to the group as a whole: When your kids are having their fingers separated, how functional are the fingers? Pardon my bluntness, I have always been one to say exactly what's on my mind, occasionally, to the embarrassment of myself, my family and friends!
There was a girl (Michelle) with Apert's here in Dayton that I was able watch grow up. (we were 15 years apart) Her family moved away without letting me know, so I'm not sure where she is now. (Wish I knew!) I remember that she went through a lot of surgeries, but wasn't "right there" when they happened. School, homework and my "social" life as a teen took a lot of my time. I wish now I was older then and could have offered a little more support for the family.
The pseudo interview with the literacy center isn't going to happen. I talked with the lady who left the message stating she wanted to interview me. As it turned out, she was being polite and wanted to tell me personally that there isn't any $$ to hire another person. I already knew that! It's sad, because if they don't hire someone else, or at least replace the existing director, the center is going to collapse! The center is located smack in the middle of a farming community. I know for a fact that there are a lot of adults who need to improve their reading skills up there! The center is poorly operated and those who do come aren't exactly "welcomed" in a friendly manner. That is the LEAST of the problems this director has!
Well, out with one interview, in with another. This time it's real! It's for a part time clerical position with an agency that focuses of developing "responsible youth". The mission this group has is complicated. One component : There is a group of adults who travel to schools and gives motivational assemblies. The adults speak from their hearts, sharing personal triumphs over obstacles life threw at them. I have volunteered to be one of the speakers! I will be giving a shorter rendition of the testimony Christine Clark will be publishing in Apert News. This really excites me! It has always been a dream of mine to talk with groups of people and conveying the message of "just because I am different on the outside, I'm not different inside". I also believe if I explain why I'm different on the outside, there is a lot less staring, rude comments and other obstacles to get in the way of what might be a neat relationship! And now, to be able to work for the agency! Wow! Although small, I believe this agency will grow! I would love to grow with it!
Okay, I've rambled enough!
Take care all! Joanne in Ohio ========================================================================= Date: Tue, 6 Jan 1998 10:32:48 -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: Carol <cddg@BELLSOUTH.NET> Organization: Home Subject: teachers MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Nick's teacher, Sandy Turner is interested in hearing from other teachers also. She has not joined the listserv yet, but plans on doing so, but until then would like me to give her email address on here.. balistic2@aol.com . Thanks... Carol Graves ========================================================================= Date: Tue, 6 Jan 1998 10:35:16 -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: Carol <cddg@BELLSOUTH.NET> Organization: Home Subject: Re: teachers MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Cindy.. I gave Nicks teacher your email address.. hers is balistic2@aol.com, Nick is in kindergarten, her name is Sandy Turner.. Thanks, Carol
cynthia f. blodgett wrote:
> Carol wrote: > > > > A few months ago there was a teacher of an Aperts child on the listserv > > wanting to contact other teachers.. does anyone have that name or email > > address? Nick's teacher would love to email with other teachers and I > > had told her about the other teacher, but we lost the email address.... > > > > Carol Graves > You found me Carol! My name is Cindy Blodgett-- I teach first grade and > have an Aperts student in my class. My e-mail address is: > blodgett@penn.com I would welcome any communication with other > teachers. Thanks! > Cindy ========================================================================= Date: Tue, 6 Jan 1998 15:44:25 -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: "cynthia f. blodgett" <blodgett@PENN.COM> Subject: Re: teachers MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Dori Jefferson wrote: > > Cindy: > Did Seth's teacher, Wanda Greer, contact you. I gave her your > E-mail address several month's ago? Just wondering. > > Dori A. Jefferson > djeff@midwest.net Dear Dori, I am not aware that Seth's teacher ever contacted me, although I have three teenage boys who sometimes delete my messages--grrr! Perhaps you could ask her sometime. Thanks for the concern. Cindy ========================================================================= Date: Tue, 6 Jan 1998 20:43:14 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Gaylann1 <Gaylann1@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Dallas Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Dear Jenn,
I read your email to Ize. The contact person at Cranial Facial in Dallas is Charlene Smith. I was given her name by Stephen Wright from the crouzons list service. I was glad to hear from you to see about the article from Dr. Fearon. He will be doing Blake's surgery Jan. 27th. Maybe Charlene will have an article on crouzons also.
Gaylann, Blake's grandmother ========================================================================= Date: Tue, 6 Jan 1998 21:21:23 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Gaylann1 <Gaylann1@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Jenn & Chris Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Hi Jenn & Chris,
Just catching up on about three or four days of messages. Thanks for the webpage addresses. Jenn I tried the one you gave the other day on pediatric neurosurgeons and was unable to get much info. Will try these now with hope of more success.
I've been writing about our little Blake with info I get from my daughter. She, of course, could communicate better than I but the time never seems to get here. Well Sunday night they were out here for a birthday dinner and she sat here on AOL for about 45 minutes writing about their experiences with Blake and how they ended up where we are today. I didn't think to have her write outside of AOL then send later and AOL CRASHED! I was just sick. Now it will have to be another day.
To Christine: It's so hard for me to respond about Chattanooga. Hopefully Sonya will be able to write later.
Love to All, Gaylann, Blake's Grandmother ========================================================================= Date: Tue, 6 Jan 1998 23:39:12 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: Camous <Camous@AOL.COM> Organization: AOL (http://www.aol.com) Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
In a message dated 98-01-06 10:56:58 EST, you write:
<< When your kids are having their fingers separated, how functional are the fingers? >> Evan can get a night light out of the socket!! And tie his suction catheters in a knot (for real, witnessed, repeated!) And he still has to have his thumbs straightened out! He wont ever have full flexion of his knuckles but so far he seems to do well! I'm sure at some point, his sisters will try to get him to joint them in playing with their Barbie/Ken/movie character collection- that's a real dexterity test!
Good luck on the "real" interview!!
Marianne ========================================================================= Date: Wed, 7 Jan 1998 08:15:03 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jenngram <Jenngram@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Re: pictures Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Ok, O am going to ask something that may sound silly, but nonetheless...
When you took your kids to have their early pictures done..prior to surgeries...did you let the photographer know ahead of time about their situation, or did you just let them find out when you got there. We want to go ahead and have a set of Jordan done..hopefully his gracious good mood will prevail..and I was just curious.
Also, after the cranial surgery..how are the scars? Our Dr. mentioned different incision lines based on hair color? Something about certain areas are more visible on dark haired vs light haired kids? Jordan has darker hair (even darker when its dirty..YUCK)..sorta brownish/blond (again, when its clean :) :) ) and quite a bit of it. So I'm wondering if the scar ever fades? and if so how long? Another reason we wanted to go ahead and get some pics..we weren't sure the next time we'd be able to do so...w/o a huge scar being the focus.
Joanne, sorry about the interview..good luck on the real thing!
Also, I jsut met someone w/ Owen's syndrome? Anyone heard of it..Apparently named after her, by her docs in Dallas..a lot of craniofacial envolvement, similar, but not identical to Apert)..Very tiny mouth. Anyway, just curious as to if anyones heard of it. I can't find any info on it. Shes my age now (26) and haqs done remarkablly well..apparently Joe and I were in high school with her..but to echo Joanne..a little too envolved with our own lives at the time to pay much attention. Of course, now I wish I had been a little more aware!! Oh Well!!!
Ya'll have a good day!!
Jenn! ========================================================================= Date: Wed, 7 Jan 1998 09:37:34 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: TFinch10 <TFinch10@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Re: pictures Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Dear Jenn, A quick thought on pictures. We took a lot of pictures and continue to take alot of pictures. We take pictures every time Nate goes to the doctor, gets a Cat scan, has a hospital stay, even in ICU. Some of them are not "pretty" but they are snaps of our life and of the many stages and transformations that a family's life entails. Often, I clue people--such as photographers, teachers, whoever--into particulars of Nate's syndrome, always with a tone of helpful friendliness, so that they are not caught off-guard and wondering. Most importantly, it helps signal that this a subject we can discuss, matter of factly, no big deal. Nate's "halo" scar, the one that goes ear to ear over the top of the head, is visible under his blondish/brown hair. The scar is whitish. I miss his original scarless skin, on his head and hands, sometimes. For down the road, when hand surgeries come, you might want to make a hand cast of Jordan's "original" hand. We made casts of Nate's hands throughout the stages of release and they have been useful in explaining to him what was done when he was a baby, and also in explaining to friends and classmates. (I do a little talk at school with the plaster casts.) Good luck! Jeanne in Boston ========================================================================= Date: Wed, 7 Jan 1998 09:08:10 -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: Dori Jefferson <djeff@MIDWEST.NET> Subject: Re: Hand Function MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit
Joanne:
Seth's hand were very involved. He now has five digits. However, I have seen what you can to with a thumb and fused digits and I feel certain that your function is as good as his. He is able to count each digit but still mostly relies on a pincer grasp. There isn't anything he can't get into and he will figure out a way to do what he needs to do. When He was first born I really felt strongly that he had to have 5 digits, what I didn't realize is that there weren't enough flexor tendons to support that many digits. So he has them but on his right hand he can only flex his thumb and has very little motion on his ring finger. His left hand is better, he can flex the thumb and the ring finger and pinky together. That may be why many physicians choose to eliminate a digit on each hand.
Joanne, after seeing what you were able to do with your hands I gave up worrying about Seth's hand function. The professionals (teachers, physcial therapist) were more concerned. I had to reasure them that it would okay. I have gone as far as to show them your hand writing ( which is much better than mine). He now writes, colors, cuts, pastes. It takes him longer but he has alot of patience.
Peace, daj
Dori A. Jefferson djeff@midwest.net ========================================================================= Date: Wed, 7 Jan 1998 12:54:33 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> Organization: AOL (http://www.aol.com) Subject: Re: pictures Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
In a message dated 98-01-07 08:15:30 EST, you write:
<< When you took your kids to have their early pictures done..prior to surgeries...did you let the photographer know ahead of time about their situation, or did you just let them find out when you got there >> Jenn, I didn't "forewarn" the folks taking pictures (usually Penneys or Sears). I figured knowing there were three together (ages 0-5, 1-6, etc) was enough warning. Evan is less trouble that his 4 year old sister who managed to have her middle finger stuck out (flipping the bird) inadvertently in one of the otherwise great shots and was scratching her behind in another! One time when it was particularly trying, the photographer mentioned that she has a neice with a shunt..and was very patient!! I unfortunately only get around to dragging everyone in for "professional" pictures when a head surgery is scheduled- Quick! do it before he looks different!! At home, we take pictures regularly.
The scars fade after several months. If you really want to dive into wound healing, have Joe try to get his hands on a "Wound Closure Manual" a paperback produced by Ethicon (a suture company). It has a great section on the stages of wound healing and scar formation and the timelines, etc. Unless someone is a hypertrophic scar form-er (ie keloids) most scars will fade after a while. Evan's cranial scar has been used twice and he is very fair (blonde hair) and now finally has hair (the neurosurgeons kept shaving during the shunt-follies) His scars are really barely noticeable now and the last surgery was done in August. His abdominal scars are much more prominent- but scalps have better blood supply- therefore are more "forgiving". When they do an "ear-to-ear" incision, you'll find they often zigzag the part on the sides. This keeps the hair from parting at the scar as they get older. Also works like a Z-plasty where they have a tough closure. Keep in mind that, on the head, they often have to really stretch the skin to close over a newly enlarged skull. Making a zig-zag incision increases the surface area of the incision so as to decrease the tension on any one point or stitich. One other thing to remember is with any baby having surgery of any kind is that they have such good skin and so much growing to do, that in a few years, many scars are barely noticeable. I remember doing physicals on adults who had early surgeries for pyloric stenosis or congenital cardiac anomalies and often, the scars are very miniscule by the time they are old enough to care!
Hang in there! Marianne ========================================================================= Date: Wed, 7 Jan 1998 14:03:57 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> Organization: AOL (http://www.aol.com) Subject: Re: pictures Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Thanks to everyone responding about the pictures. Our Dr. did mention that the scars are more visible on darker haired kids..guess the white tint of the scar shows more w/ the contrast..as opposed to blonds. He also asked about baldness running in the family so he would have a better idea about the future..so far, and to the delight of the men in our families..no onw has gone bald yet!!
So I guess it will be a wait and see..also..I am a keloid former..Joe isn't..so like everything else we have a 50-50 shot. Heres hoping.
Marianne, thanks for the clue about the book..Joe is hating the bookstore these days ..with all my reading requests and all..hopefully I'll be able to blackmail..opps persuade.. him into going again. Ahh, he uses them too!!!
So, off to Sears we go this weekend. Cross your fingers jordan is more cooperative there than he was w/ the developmental people, as he gave them quite a show of what its like to be w/ him when hes in a bad mood!!
Thanks again for the imput from everyone Jenn ========================================================================= Date: Wed, 7 Jan 1998 14:33:31 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Joanne Lindamood <chanan8@JUNO.COM>
Hello!
Jenn, take as many pictures as you can! I have a few of me as a tot, but not many prior to two years. Sure wish I had them now! I asked once why there wasn't any pictures of me, never did get a straight answer. My grandparents said once, directly to me, "you weren't as pretty then" . This might give some indication to how my grandparents handled people who were different! grrr! I have pictures that a doctor sent to me of my hands prior to any surgeries and I treasure them! About fore warning the photographer, do it! I will echo Jeanne's comment "Most importantly, it helps signal that this a subject we can discuss, matter of factly, no big deal." I would love a picture of Jordan - hint - hint!
I have a "halo scar" - neat analogy, thanks Jeanne! It is visible when I get my hair cut - obviously, but that's the only time. I have blonde, short hair. Hope this helps.
Thanks Dori for the information about Seth's hands. I guess what I'm mostly curious about are the nuckles and the ability to flex the fingers. Is it the same with all kids, or are the abilities varied? Has Seth completed his surgeries or will there be more? I'm not just referring to the hand surgeries either. What's going on with him? I loved the picture you sent with the Christmas card. He looks like a little man!
Joanne, in, it's raining cats and dogs, Ohio Have you ever thought about where the water goes in the city when it pours? I visioned this mad rushing river under the streets when I swam out for lunch! ========================================================================= Date: Wed, 7 Jan 1998 14:52:25 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Mark Smith <dsprado@PENN.COM> Subject: Re: fingers MIME-Version: 1.0 Content-Type: multipart/alternative; boundary="----=_NextPart_000_003D_01BD1B7B.DDC14480"
This is a multi-part message in MIME format.
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Hello,
Joanne, Kayla has all of her fingers. She has had a number of surgeries = to separate them. She only has knuckles in the upper part of her = fingers. The middle knuckles do not work at all on any of fingers. On = both of her pinky she can use the little knuckles. She uses the middle = finger and index a lot with her thumb. She had her thumps rotated once = but she will need to do it again in the future along with making more = web space between the thump and index finger. She does very good with = her hands. I am in no hurry to make her fingers longer for they are = very short or do to the thumb thing either. She can lace things and even pick up pennies off the bare floor. To me = that great.
Michele
------=_NextPart_000_003D_01BD1B7B.DDC14480 Content-Type: text/html; charset="iso-8859-1" Content-Transfer-Encoding: quoted-printable
<!DOCTYPE HTML PUBLIC "-//W3C//DTD W3 HTML//EN"> <HTML> <HEAD>
<META content=3Dtext/html;charset=3Diso-8859-1 = http-equiv=3DContent-Type> <META content=3D'"MSHTML 4.72.2106.6"' name=3DGENERATOR> </HEAD> <BODY bgColor=3D#ffffff> <DIV><FONT size=3D2>Hello,</FONT></DIV> <DIV><FONT size=3D2></FONT> </DIV> <DIV><FONT size=3D2></FONT> </DIV> <DIV><FONT size=3D2>Joanne, Kayla has all of her fingers. She has = had a=20 number of surgeries to separate them. She only has knuckles in the = upper=20 part of her fingers. The middle knuckles do not work at all on any =
of fingers. On both of her pinky she can use the little=20 knuckles. She uses the middle finger and index a lot with her = thumb. =20 She had her thumps rotated once but she will need to do it again in the = future=20 along with making more web space between the thump and index = finger. She=20 does very good with her hands. I am in no hurry to make her = fingers longer=20 for they are very short or do to the thumb thing either.</FONT></DIV> <DIV><FONT size=3D2>She can lace things and even pick up pennies off the = bare=20 floor. To me that great.</FONT></DIV> <DIV><FONT size=3D2></FONT> </DIV> <DIV><FONT size=3D2></FONT> </DIV> <DIV><FONT size=3D2>Michele</FONT></DIV></BODY></HTML>
------=_NextPart_000_003D_01BD1B7B.DDC14480-- ========================================================================= Date: Wed, 7 Jan 1998 14:59:26 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: Yonstein <Yonstein@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Ear Tube surgery Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Hi Everyone:
I guess I am just writing to express myself. Emily is having ear tubes put in tomorrow. Since I found out about this, I was pretty calm. I kept saying compared to the cranial surgery this was a piece of cake. I was so anxious about the other surgery, it being so serious and also her first one, that this seemed like no big deal.
All of a sudden today I am overwhelmed about it, worrying about it. I know deep down that she will be okay, but I think I tried to tell myself it was no bid deal, but it''s still anesthesia. I guess whenever I go to a doctor or find out anything else new about her, I still have a hard time with the whole picture.
Anyway, thanks for listening.
Janine ========================================================================= Date: Wed, 7 Jan 1998 15:16:12 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: LUVS2WRTE <LUVS2WRTE@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Re: fingers Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Personally, I have all my fingers separated. I am very happy at the way they function. I don't have any middle knuckles which are in the finger itself, only the knuckles that join the hand to the finger. I am limited to certain things. I also find my own way of doing things which are hard. I am very greatful at the results. ========================================================================= Date: Wed, 7 Jan 1998 15:17:43 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: LUVS2WRTE <LUVS2WRTE@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Re: Ear Tube surgery Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Janine,
I hope all goes well for Emily's surgery. I had mine put in when I was younger. I thinked it helped very much.
-Andrea ========================================================================= Date: Wed, 7 Jan 1998 15:29:43 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: JPCSLC <JPCSLC@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Re: Ear Tube surgery Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Hi Janine,
My Katey has had one set of ear tubes put in already! My husband and I felt the same way you feel, too!! But I am here to reassure you that this is a piece of cake!! No, really, the anathesia is the worst part but after a couple hours of grouchy-ness, they are back to their normal selves!! Please don't worry!! It's the greatest thing too! We are possibly going on our 2nd set! The first ones fell out 7mths after surgerey!! Good Luck, and let me know how it goes.
jennifer ========================================================================= Date: Wed, 7 Jan 1998 15:04:20 -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: Surgery and Nausea
From: Horning Bob on Wed, Jan 7, 1998 4:34 PM Subject: Surgery and Nausea To: Apert Listserver
Hi all,
Krista had surgery last monday to open her nose a little more (bilateral intranasal ethoidectomy) and rebuild the bridge of her nose (costal cartilage graft). It went reasonably well and she came home last night. The bone for building up her nose came from her rib, and that hurts worse than the nose.
But I was reminded of her past nausea from surgery. She used to throw up a lot for a couple days after surgery, in response to the anesthetics. But a couple operations ago a nurse anesthetist friend told us to request Zofran after surgery. It is something they can put in the IV that greatly reduces the reaction to anesthetic. And it does work very well! If you or your child throw up a lot after surgery, you should ask about it.
It does not, however, eliminate all nausea. Blood in the mouth or nose drains into the stomach, and that upsets the stomach too. Zofran doesn't do anything for that brand of nausea.
Bob Horning ========================================================================= Date: Wed, 7 Jan 1998 16:10:43 -0600 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Ize <ize@TACOMA.CEATLABS.OKSTATE.EDU> Subject: Hello to all MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Hello to all!
Felipe didn't have the tonsils removed last friday because he got a little bit of cough. Now he seems to be better and the big day is going to be this friday. I am also worried about it as always... I know that everything is going to be fine, this is maybe mom's thing, to be always worried and concerned. Like Janine said it's still anesthesia...
Felipe got all fingers before the age of two and he is doing very well. He uses his index finger, midle finger and the thumb the most on both hands. The doctor said that he sees improviment for Felipe's hands, but he wants to give a little bit of break to Felipe for now.
Janine, thanks for the information!
Best wishes to all!
The Ize Family. ========================================================================= Date: Wed, 7 Jan 1998 15:50:28 -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: pictures Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
Hi Jenn,
We get Brenna's pictures done at Penny's every 6 months. We never tell them of her condition prior to us showing up. We have not had a bad experience yet. They have been very nice to work with and professional. We take a close up of her and one siloette so we can track any changes that will occure throughout her surgical history. I like Penny's because you can view the pic's immediately on the computer screen and decide if you would like to redo it or not. Once I get my "you know what" together, I will send her collective pictures into Don to add to Tetters friends list. I have been so unorganized (preoccupied) lately. Hopefully soon.
Brenna's scar is still noticable, but she has long, curley, blond hair and fair skin so it isn't too bad. Just part of her. :-)
Hope you are staying dry in FLA. WE are wet and chilly here in OR Take care, Robyn & the Plum
At 08:15 AM 1/7/98 EST, you wrote: > Ok, O am going to ask something that may sound silly, but nonetheless... > >When you took your kids to have their early pictures done..prior to >surgeries...did you let the photographer know ahead of time about their >situation, or did you just let them find out when you got there. We want to go >ahead and have a set of Jordan done..hopefully his gracious good mood will >prevail..and I was just curious. > >Also, after the cranial surgery..how are the scars? Our Dr. mentioned >different incision lines based on hair color? Something about certain areas >are more visible on dark haired vs light haired kids? Jordan has darker hair >(even darker when its dirty..YUCK)..sorta brownish/blond (again, when its >clean :) :) ) and quite a bit of it. So I'm wondering if the scar ever fades? >and if so how long? Another reason we wanted to go ahead and get some pics..we >weren't sure the next time we'd be able to do so...w/o a huge scar being the >focus. > >Joanne, sorry about the interview..good luck on the real thing! > >Also, I jsut met someone w/ Owen's syndrome? Anyone heard of it..Apparently >named after her, by her docs in Dallas..a lot of craniofacial envolvement, >similar, but not identical to Apert)..Very tiny mouth. Anyway, just curious as >to if anyones heard of it. I can't find any info on it. Shes my age now (26) >and haqs done remarkablly well..apparently Joe and I were in high school with >her..but to echo Joanne..a little too envolved with our own lives at the time >to pay much attention. Of course, now I wish I had been a little more aware!! >Oh Well!!! > >Ya'll have a good day!! > >Jenn! > ========================================================================= Date: Wed, 7 Jan 1998 18:47:47 -0800 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Robin MacDonald <macdonal@GOLDEN.NET> Subject: scars after surgery MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Our daughter has blonde hair and after 5 years it is very difficult to see any trace of the scars on her head. Even when her hair is wet it is difficult to make them out..although you still can. hope this helps..
re: photographer...I think the more comfortable the photographer is with the child..the better the photo. I would tell them as you don't want their attention to be elsewhere when they are trying to take a good photo. you may be better off with a better photographer with any child...as they need alot of experience to really capture the personality of the child on film. ========================================================================= Date: Wed, 7 Jan 1998 15:57:50 -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: Oops Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
Sorry all, I have the Dropsies today, I have been dropping everything. Anyways, I accidently pushed the RR button before I sent my last message. Please just ignore the return message. I really don't need to know you have all read it :-)
sorry for the hassel :-) Robyn Johnston ========================================================================= Date: Tue, 7 Jan 1997 07:03:30 -0800 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Longshot & Darwin <Longshot.Darwin@MCI2000.COM> Subject: Finger Seperation and in general In-Reply-To: <19980106.105032.17910.0.chanan8@juno.com> MIME-version: 1.0 Content-type: text/plain; X-MAPIextension=.TXT; charset=US-ASCII Content-transfer-encoding: 7bit
Joanne,
I have had my fingers seperated and I have no problem functioning with them. It takes awhile to get adjusted to them. I just don't have any middle knuckles, but that doesn't stop me.
I just wanted to say to the families adjusting to Apert's. That it may not look so good now, but I promise you it will get better. I am 24 years old. My mom was alittle surprised at first, mainly because they didn't know anything about it. After that though, she and my dad realized that they had a heathly baby that they loved. So just keep the faith and everything will be fine.
If anyone wants to write me personally and talk please feel free to do so.
Rachel longshot.darwin@mci2000.com ========================================================================= Date: Wed, 7 Jan 1998 19:28:10 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jenngram <Jenngram@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Re: Ear Tube surgery Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Janine,
Good luck to Emily..and yourself on the ear tubes.. JHust try and think how much better she will be after..this is what I am doing regarding Jordans cranial surgery. I'll be thinking of ya'll!!!
Good Luck
Jenn ========================================================================= Date: Wed, 7 Jan 1998 19:27:24 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Unclbennie <Unclbennie@AOL.COM> Organization: AOL (http://www.aol.com) Subject: NEW TO THE LIST Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Hello all, I am new to this list, I am a nurse who is following a child who has Apert's syndrome. She is 8 years old and is scheduled for cranial facial surgery next month. She has developed a latex allergy and so the surgery is going to be tricky. My question to the list is have any of you experienced either difficulties with anesthesia or with the development of latex sensitivity or allergies. If any of you are interested I can post web sites regarding latex allergies. Thanks in advance for your responses. Karen ========================================================================= Date: Wed, 7 Jan 1998 19:42:53 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jenngram <Jenngram@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Re: anesthesia Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
I wanted to pass on some info re: anesthesia
Joes dad is an anesthesiologist and when I voiced my concerns regarding this to him he said it was actually greatly improved and kids tolerate better than adults..whats new, eh? He said they don't have to put them as far under as adults either..just enough so they won't feel pain which is apparently less than they have to do w/ adults having the same procedure.
I don't know if it helps reassure anyone..some days it does me..others it doesn't..b/c hey..hes an anesthesiologist whats he gonna say????
Anyway..what I know passed on..
Jenn ========================================================================= Date: Wed, 7 Jan 1998 20:25:40 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Camous <Camous@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Re: pictures Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
In a message dated 98-01-07 14:04:29 EST, you write:
<< Joe is hating the bookstore these days >> Don't know if they carry these in the bookstore. He might have to talk to someone doing a surgical rotation to get the name and # of the local Ethicon rep. Or ask the head nurse in the Operating Room of your local hospital- or someone in the surgeon's office. The books are free from them. If you get stuck, I can get you a number of either a national person or one in Pittsburgh- it'll just take longer to get to the right person.
Marianne ========================================================================= Date: Wed, 7 Jan 1998 22:22:27 +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: NEW TO THE LIST
Hello!
Karen! What dedication! I am impressed with the efforts you are making to help your patient! Wow! Boy am I happy to hear from you! Your inquiry might answer a question I have had. When I was in my third surgery, the second one on my hands. Actually, I was in the recovery room, I stopped breathing. (I was one at the time). The doctors said I was experiencing a negative reaction to the anesthetic. They whizzed me back into the operating room and performed an emergency tracheotomy. I never knew more than that. I had seven surgeries since then. But don't remember drastic problems until two years ago. I'm 32 now, I had septoplasty surgery and was an absolute horror of a patient after the surgery, in the recovery room. I was SCREAMING ugly things at the nurses. The nurses said it was because of the anesthetic and they saw it before. What is this all about? I have since been told to fore warn my doctors if there are any pending surgeries (God help me). They can go a different route with the anesthetic? Anyone? When mom relayed the things I said (to nasty to repeat) when I was "out of it" I felt so bad about my behavior! (I am usually a good natured lady) I took the recovery room staff a box of candy and a card with my deepest apologies!
Janine, Good luck on the tubes. My niece had them put in last week. It took 15 minutes! I understand the worries, Emily will be fine!
Thanks to everyone for answering my questions. Now I'm wondering why I didn't have the separations? Maybe my doctor didn't know of them?? Maybe "they" didn't exist? Hum.
Jenn, my address is on it's way!
Joanne, in Ohio. Rain, rain go away! ========================================================================= Date: Wed, 7 Jan 1998 21:24:10 -0600 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Chad & Denise Graham <cgraham@INFOAVE.NET> Subject: PICTURES & EARTUBES MIME-version: 1.0 Content-type: text/plain; charset="us-ascii"
Jenn,
We had Daryl's pictures taken at 2 months old at Sears. I didn't tell them about Daryl till we showed up. I openly told them that he is a miracle baby with apert syndrome. I did the basic explaining what the syndrome entails and they were absolutely wonderful. I find that everyone we have ever encountered has only had general curiosity about him. After I openly explain his syndrome I am usually pleased with their questions and responses. I have had more people notice Daryl's hands than his head, especially after surgery. Good Luck and I can not wait to see Jordan's pictures on Teeter's page!!
Janine,
Daryl had eartubes put in over a year ago. They are still there. I was like you, I had been through the cranial and thought this was nothing. Later, I wasn't so sure of myself. Let me assure you, I stayed with him until they knocked him out with a local anesthetic and it was only 30 minutes later that they were coming to get me to go back and see him. He was groggy, but quickly let everyone know he wanted his Mommy to hold him. Within 3 hours we were on our way home. Hope this helps!!
Denise Graham ========================================================================= Date: Wed, 7 Jan 1998 23:11:03 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: ETolson643 <ETolson643@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Re: NEW TO THE LIST Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Karen Our son Tim (16 years old) has had a consistent problem with anesthesia. The vomiting and nausea is pretty severe. The folks at Children's (Boston) have tried a variety of meds, including zofran (?), and none have really made much difference. Even when he had his tonsils and adenoids out he ended up in ICU, partly due to the vomiting. His last surgery, one year ago, was a 17-hour midface advancement. He was pretty much out of it and intubated for three days so the vomiting was a nonissue with that one. Beth Tolson