========================================================================= Date: Sun, 22 Mar 1998 00:17:07 -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: cal <cal@PHOENIX.NET> Subject: [Fwd: Ceci] MIME-Version: 1.0 Content-Type: message/rfc822 Content-Transfer-Encoding: 7bit
Message-ID: <35136386.7542@phoenix.net> Date: Sat, 21 Mar 1998 00:51:50 -0600 From: cal <cal@phoenix.net> Reply-To: cal@phoenix.net X-Mailer: Mozilla 3.01Gold (Win95; I) MIME-Version: 1.0 To: christopher.kilner@uspto.gov Subject: Ceci Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
To the whole Kilner Family, Tamara and I have not writen much but I have been following your your updates on little Ceci for a while now. I just can't seem to find the words other than Ceci and all of you will allways be in our hearts.
ALL our Love The LeCara Family ========================================================================= Date: Sun, 22 Mar 1998 11:29:22 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: Yonstein <Yonstein@AOL.COM> Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Good morning all:
Friday morning I was thinking that it was my last day home before I had to go work Monday (3-23). I have been very nervous about leaving the kids, Nicholas and Emily. I found a great lady to watch them while I am at work. I am lucky that I get to go back to a job share, 2 days one week and 3 days the next.
Then on my way to an appt. Friday, someone exited the parkway the wrong way and hit me and I had an accident and ended up on the lawn in front of the firehouse. Luckily, I was by myself and didn't get too hurt, just a little stiff.
Anyway, the reason I am telling you this is because on Friday, this all seemed so extreme to me and like such a big deal. Anyway, when I signed on line Saturday and got the messages about Ceci, this all seemed so irrelevant.
Now on Sunday morning, I can't stop thinking about the Kilner family and what you must be going through. My heart aches for you, and I pray that you will find the strength to get through this.
Good morning to all and best wishes,
Janine Krebs
P.S. BJ and the Harmons are always in my prayers. ========================================================================= Date: Sun, 22 Mar 1998 15:38:24 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: Irs Nav <IrsNav@AOL.COM> Subject: Re: Ceci Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Dear Kilner Family Our thoughts, prayers, sympathies and tears are with you. Our children are all so precious and we have all imagined the possibility of such circumstances. That you were able to bring life out of this situation to other children must be of great comfort to you. Your beautiful little girl's story has truly touched many lives. With deepest sympathies at your loss The Gentz family-Jeff, Ann, Rachel & Jonathan ========================================================================= Date: Sun, 22 Mar 1998 18:48:17 -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: Ceci MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
My wife and I would like to pass on our sincere sympathies. We cannot adequately express our wishes except to say that by donating her organs you created a great living legacy in others for many years to come, and that was a great gift that she left behind. ========================================================================= Date: Sun, 22 Mar 1998 22:00:35 -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: Ceci MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit
Dear Kilner family, It's Sunday night, and we've just checked our email for the first time in a few days. We were shocked and saddened to read about Ceci. You're in our thoughts and prayers. God grant you peace, The Younkins ========================================================================= Date: Sun, 22 Mar 1998 22:41:25 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: Copperhd87 <Copperhd87@AOL.COM> Subject: Ceci Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
To the Kilner family: Our deepest sympathys to you. I remember your kindness when we first came to the list server and feel so very sad that you have lost your dear one.
Whenever I am very upset about something, it always helps me to write down my feelings. When a friend of ours had a stroke, his wife found journaling to be good therapy. It's just a suggestion to try to help you thru this difficult time.
Our prayers are with you and yours,
Resa and Mark ========================================================================= Date: Sun, 22 Mar 1998 23:13:11 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Copperhd87 <Copperhd87@AOL.COM> Subject: Appt with Dr. Marsh Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
We finally had our appointment with Dr. Marsh. Mitchell's cranial reconstruction is scheduled for May 21st. Dr. Marsh said it would take 6-7 hours and he wants 3 units of blood on hand. He will want Mitchell to wear a protective helmet for 3 months after the surgery.
It sounds so scary now--I know as the time draws near, I will become more and more upset, but now things are OK most of the time. It's just a matter of keeping the reality of my precious baby and the surgery separate.
Dr. Marsh seems very nice, but very professional. Does he always wear a bow tie? He had his "little chicks" following him around. There were three of them in the room when he spoke to us. I guess you get used to that when you're in a teaching hospital. The fellow that was with Dr. Marsh told us about meeting Teeter and her family when he was interviewing for a position in South Carolina. The internet continues to shrink our world.
Mitchell's CT scan detected a developing cold and ear infection. The scan was done on Tuesday and he had no symptoms until Friday afternoon. Amazing!
Children's Hospital in St. Louis is very big and very nice. We were impressed with the facilities, except the parking garage--it's the pits. They also need more restrooms with baby changing tables. Nothing major. There's lots of distractions for the kids and that makes it nice for the parents.
Dr. Marsh uses a procedure that uses an interlocking zigzag pattern when reconstructing. He believes this reduces or eliminates the possiblity of holes remaining after healing. He also uses the resorbable plates. Dr. Salyer described a spiral pattern he uses for reconstruction. I was wondering if there was a standard procedure or if one or the other was more widely used.
It's going to be a long two months waiting. Thanks for listening.
Resa ========================================================================= Date: Mon, 23 Mar 1998 00:08:11 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: GSieb91515 <GSieb91515@AOL.COM> Subject: Re: Appt with Dr. Marsh Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Resa,
I know where your at. We are leaving tomorrow for Dallas for Jonathan's total vault (actually 2/3s forward). Dr. Salyer explained the spiral procedure to us as well giving him the ability to move side to side and up and down. I have read about the interlocking procedure in other articles that Dr. Salyer has written. I'm sure they use whichever method gives them the best results for the particular reconstruction needed. Dr. Sayler anticipates 5-6 hours for surgery. Needless to say I'm starting to feel the jitters. I feel so badly for Jonathan because he is at a really neat stage; walking, talking, exploring and having a great time and then whamo the wind is taken out of his sails. I just keep telling myself it is for the best in the long run.
We continue to feel deeply saddened for the Kilners and will keep them close to our hearts.
Will write when we return in about a week if everything goes well.
Brenda Siebert Houston ========================================================================= Date: Sun, 22 Mar 1998 23:56:36 -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: Appt with Dr. Marsh Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
Brenda - good luck with Jonathans surgery. I will pray for a safe trip and a successful procedure. Be strong for your little guy.
Hugs, Robyn Johnston ========================================================================= Date: Sun, 22 Mar 1998 23:30:11 -1000 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Becky Arakawa <arakawa@IBM.NET> Subject: Re: Appt with Dr. Marsh MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Copperhd87 wrote: > > We finally had our appointment with Dr. Marsh. Mitchell's cranial > reconstruction is scheduled for May 21st. Dr. Marsh said it would take 6-7 > hours and he wants 3 units of blood on hand. He will want Mitchell to wear a > protective helmet for 3 months after the surgery.
Resa,
I just wanted to let you know that my son, Michael -26 months old and afflicted with Crouzon Syndrom, had 2 helmets. The first was at 6 weeks just after his first cranial remodeling which he wore for about 4 months. The second helmet was after his second cranial remodeling when he was about 7 months old. That second helmet stayed on for nearly a year.
We're from Hawaii and have been receiving treatment at UCLA although the helmet therapy is done thru Cedars Sinai. The helmet was strictly for shaping rather than protection (although you'd want almost every toddler to wear a helmet...they move so fast). The results have been pretty good considering from where he started. Even the doctors have marveled at the results.
So don't worry about the helmet...if you put stickers on it, you'll always get people to chuckle. We used to change them for all the holidays. The best sticker was the one that said, "No Fear." Indeed, our children have more courage beyond words.
Aloha, Becky Arakawa ========================================================================= Date: Tue, 24 Mar 1998 07:59:51 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Alice Lynch <goddess@CAPITAL.NET> Subject: Re: Appt with Dr. Marsh MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit
Hi! We're the Lynch's and we've been using Dr. Marsh since our son, Colin, was born in 89. Yes, he always wears bow ties. It's his trademark. He's a wonderful fellow and describing him as very professional is right on target. We've been very happy with his work and would recommend him to anyone.
Good luck. You're in good hands.
Alice.
---------- > From: Copperhd87 <Copperhd87@AOL.COM> > To: APERT@LISTSERV.AOL.COM > Subject: Appt with Dr. Marsh > Date: Sunday, March 22, 1998 11:13 PM > > We finally had our appointment with Dr. Marsh. Mitchell's cranial > reconstruction is scheduled for May 21st. Dr. Marsh said it would take 6-7 > hours and he wants 3 units of blood on hand. He will want Mitchell to wear a > protective helmet for 3 months after the surgery. > > It sounds so scary now--I know as the time draws near, I will become more > and more upset, but now things are OK most of the time. It's just a matter of > keeping the reality of my precious baby and the surgery separate. > > Dr. Marsh seems very nice, but very professional. Does he always wear a > bow tie? He had his "little chicks" following him around. There were three > of them in the room when he spoke to us. I guess you get used to that when > you're in a teaching hospital. The fellow that was with Dr. Marsh told us > about meeting Teeter and her family when he was interviewing for a position in > South Carolina. The internet continues to shrink our world. > > Mitchell's CT scan detected a developing cold and ear infection. The > scan was done on Tuesday and he had no symptoms until Friday afternoon. > Amazing! > > Children's Hospital in St. Louis is very big and very nice. We were > impressed with the facilities, except the parking garage--it's the pits. They > also need more restrooms with baby changing tables. Nothing major. There's > lots of distractions for the kids and that makes it nice for the parents. > > Dr. Marsh uses a procedure that uses an interlocking zigzag pattern when > reconstructing. He believes this reduces or eliminates the possiblity of > holes remaining after healing. He also uses the resorbable plates. Dr. > Salyer described a spiral pattern he uses for reconstruction. I was wondering > if there was a standard procedure or if one or the other was more widely used. > > It's going to be a long two months waiting. Thanks for listening. > > Resa ========================================================================= Date: Mon, 23 Mar 1998 08:36:55 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jenngram <Jenngram@AOL.COM> Subject: Re: Ceci Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
I have been away from my computer for a rew days..company and the sort..so please accecpt my apologies in not sending my condolences sooner. I am at a loss for words, but know Ceci was a wonderful little girl and that everyone is here for a reason. She just fullfilled her work here on Earth a little sooner than the rest....that alone is a testament to how truely wonderful she was. KNow that you all will be inour thoughts and prayers..if there is anything you need please feel free to call on us.
Jenn, Joe, and Jordan Graham ========================================================================= Date: Mon, 23 Mar 1998 08:50:11 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Thornq <Thornq@AOL.COM> Subject: Re: Appt with Dr. Marsh Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Resa,
I don't know much about the pattern for construction, but I do know that my doctor said that the disolvable plates were too experimental and that is why he did not use them on Andrew. I don't know, but that is all that he said. They said that they do not know much about the disolvable plates to use them. Just a little input on the helmet. When Andrew had his cranial reconstruction, they had him wear a helmet, but it was not a helmet just for him. It was a one size fits all and then they added padding where it was too big. That caused some major problems with his suture line. He tended to sweat alot, which all these kids do, and that in turn caused necrosis of the skin. I just want you to keep a close eye on it, because it only took six days to happen and it was four months of agony to heal it. I'm sure that you will get a better helmet, but that is just my experience. Please feel free to e-mail personally if you would like more information about this.
Good luck.
Lynn Thornquist Thornq@aol.com ========================================================================= Date: Mon, 23 Mar 1998 12:10:44 -0800 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Lark Jarvis <lark@INVOLVED.COM> Subject: Upcoming "Church of 80% Sincerity" shows in Los Angeles! -They're FREE! :) Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
> >Hi all, > >Here's a forward from a friend of mine, David Roche--the only "openly facially different comedian" I'm aware of . . . :~)
>David, who's in his early 50's now, lost most of his lower jaw following radiation treatments for cavernous hemagioma (a rare type blood vessel tumor--treatment would be much different now . . .) I met him at the AboutFace conference in San Diego a couple of years ago, and I really like him and his "message", which translates well all across the facial difference spectrum, and to the human condition in general . . . . >(In a nutshell, his message is that people with all the ranges of facial difference and other differences/disabilities often get the negative parts of other people's personality, the "shadow side" projected onto us--and his show is about very gently handing that back, looking at it, acknowledging that that hurts, and laughing about it as appropriate . . . he does a good job of making facial difference a "human" issue, and not just a "special interest" kind of thing . . . it goes way beyond just "faces," in other words. > >The Church of 80% Sincerity" part, as I remember, refers to the mysterious phenomenon that when we are undertaking anything positive in our lives, any difficult change, it seems that 80% sincerity is all that's needed. The Universe, Grace, (or whatever it is to you in your personal spiritual system) seems to take care of the rest . . . If we're waiting for 100% sincerity before undertaking anything, his point is, that's probably not going to happen . . .;~) > >His show is aimed at adults, so be "forwarned", it deals with various adult themes (healthy sexuality, etc). (However, I think it would be fine for late adolescents--in fact, if I were a parent of a late adolescent with facial difference of any kind, or without, for that matter, I'd find it particularly appropriate, actually . . . ) There aren't a lot of really honest, multi-faceted adult role models out there for people with facial difference, and I consider Dave to be one. > >If you're not in the LA area and you'd like to be added to Dave's "Church Bulletins" mailing list, his email is DaveRoche@aol.com >If you're in the LA area, check out these free shows-- >I guarantee you'll find them thought-provoking! >Lark >>Return-Path: <DaveRoche@aol.com> >>From: DaveRoche <DaveRoche@aol.com> >>Date: Mon, 23 Mar 1998 14:33:06 EST >>To: Bspfitch@aol.com >>Subject: Upcoming "Church of 80% Sincerity" shows in Los Angeles! - Please forward this, >> >>Dear Friends: >>For those of you in the Los Angeles area, for those who may have friends or >>contacts there: Please forward this message, letting people know about my >>shows. They are both free! And I cannot imagine either theatre filling up. So >>come one, come all. The show in Burbank is a showcase for TV screenwriters, >>casting directors, producers, etc. This is a great opportunity, and I would >>love enthusiastic audience members. Thanks very much. Info follows. >>David >> >>1) Event: "The Church of 80% Sincerity," written and performed by David Roche, >> directed by Sarah Corr. >> Date/time: Monday, March 30th. 8:00 pm. >> Place: The Falcon Theatre, 4252 Riverside Dr., Burbank >> Admission and parking are free. >> >>2) Event: "The Church of 80% Sincerity," written and performed by David Roche, >> directed by Sarah Corr. >> Date/time: Tuesday April 7th, 7:00 pm >> Place: UCLA/Armand Hammer Museum, 10899 Wilshire Blvd, Los Angeles >> Admission is free. Museum parking $3 flat rate after 6:30 pm. >> For more information please call (310) 443-7000. >> >>Thanks again. >>David ========================================================================= Date: Mon, 23 Mar 1998 15:38:20 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: ETolson643 <ETolson643@AOL.COM> Subject: Re: cranial vault...midface advancement?? Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
I wanted to extend my deepest sympathies to Ceci's family at such a difficult time. My thoughts and prayers have been with you. My father also passed away last week, so I have been just catching up on the mailing list. On the subject of cranial vault...the cranial facial team in Boston does not refer to a procedure by that term. (I don't think) Tim's last surgery... a year ago...was a midface advancement. Are these the same procedure being termed differently??? I am confused. The purpose of Tim's surgery was to move his upper jaw, cheekbones, eye sockets, and forehead forward. Dr. Mulliken and Dr. Ferraro used to do this procedure at younger ages but in recent years have been doing it only on patients who are older...in their teens. Tim's only other head surgeries were the suture release as an infant, and the forehead reconstruction at age 9. Please clarify what the vault procedure and what its intended purpose is. Thanks!!
Beth Tolson Boston ========================================================================= Date: Mon, 23 Mar 1998 15:59:39 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: Gaylann1 <Gaylann1@AOL.COM> Subject: Gaylann to Brenda Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
We will have you in our thoughts and prayers while you are in Dallas. We will be interested to know how thing go. What you think of the hospital and teams. Blake is due back the first of May for a follow up appointment. He looks fine and is doing okay except for ear infections. We are curious to see what they say about the way the bone has grown back. It's amazing how fast the bone develops. Wishing you loads of luck, Gaylann, Blake's Grandmother Cordova, Tenn. ========================================================================= Date: Mon, 23 Mar 1998 19:24:01 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: foster <foster@ICONTECH.COM> Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
Good luck to Jonathan,I am sure everything will go well and this will soon be all behind you and your family.
Resa, I don,t have any knowledge about the helmets because Billy did not have to wear one after his surgery. We did ask his surgeon about the disolvable plates before his surgery and were told the same as Lynn that they were to new and that he uses the regular plates which we were told that the plates would not be removed. I know some doctors take the plates out but ours said he does not.
Billy has an appointment with his surgeon on Friday to check dent (thats what we call it)on the right side of his forehead.It is about the size of a half dollar and has only appeared recentley so they want to check it out.
Beth, We are sorry to hear the sad news about your dad.
Fosters from Pa. ========================================================================= Date: Mon, 23 Mar 1998 22:20:04 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jack and Raquel <jara1@BELLSOUTH.NET> Subject: Surgeries MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Resa and Brenda,
It seems that there are a few of us in the same boat. Our daughter Nicole is scheduled for her first surgery May 7 and boy am I starting to get nervous. I try not to think about it and when I'm talking to people and telling them whats going to be done, I'm really not thinking about it because if I do I'd go crazy. Our Doctor, Dr. Wolfe calls the surgery Nicki is having (cranial vault remodeling) it's really curious how everyone has so many different names for the surgeries. Nicki has fluid in both ears and was on antibiotics for it. She just finished the antibiotics but now has a cold. I know that's probably just going to add to the problem. Her ENT Doctor, Dr. Josephson said he might try and see if he could put tubes in her ears during the surgery to avoid yet another surgery if possible. He's been trying to get rid of the fluid for a while now and I know he doesn't want it to get worse and possibly affect her hearing. Nicki has a follow up visit with him on the 28th of April so I guess we'll know better then.
Brenda good luck with Jonathan's surgery he will be in our thoughts and prayers.
Resa we will keep you posted as I hope you keep us posted as well.
Let me give you a quick re-cap about Nicki, she was born October 3, 1997 with aperts and is now almost 6 months old. When she has her surgery she will be 7 months of age.
Alright enough rambeling for now.....
Raquel Miller jara1@bellsouth.net ========================================================================= Date: Mon, 23 Mar 1998 23:20:11 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Thornq <Thornq@AOL.COM> Subject: Re: Surgeries Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Raquel,
Andrew had his ear tubes put in during his frontal advancement. It only took his ENT about one hour to do it too. All that has to happen is that both offices (craniofacial & ENT) need to coordinate. If that is how you want it to happen, then make sure that both offices know that they need to contact the other about doing a double surgery. Here in Boston, it is done quite frequently. Andrew has had two different doctors work on him at one time at least three times.
Just my little input.
Lynn Thornquist (Holliston, MA) ========================================================================= Date: Tue, 24 Mar 1998 08:49:32 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Don Sears <dsears@SCRS.STATE.SC.US> Subject: FW: An idea MIME-Version: 1.0 Content-Type: text/plain
I think this is an excellent idea, and I would like to suggest that we DO try to coordinate it - time zones are a small obstacle to a hardy group like ours. If you would like to participate in the Foster's First Annual Balloon Release, write what you would like on or attached to a helium balloon, and let's plan for a release at 4:00 PM Eastern (US) time on Saturday, March 28, 1998. If this is in the middle of the night where you live, send your balloon up at 4:00 PM your time. I'll send a reminder out Friday afternoon.
> -----Original Message----- > From: foster@icontech.com [SMTP:foster@icontech.com] > Sent: Saturday, March 21, 1998 8:53 PM > To: Don Sears > Subject: > > Don & Cathie, > > Hi, I am writing to you guys instead of the server because I have an > idea > that I wanted to run past you instead of writing it on the server. > It is a terrible thing about little Ceci. It seems that we are all at > a loss > for the right thing to say or do about our feelings. We are all over > the > place and donations are one way that we can express our love for this > girl > whom most of us only knew on Teeters page and on the server. I was > thinking > of a way that we can all also say our personal good byes to Ceci. > How about having a balloon release. I was thinking that we might pick > a day > that all of us can release a balloon with our good byes or whatever we > want > to say to Ceci. Of course we cannot possibley all release them at the > same > time because of different time zones but we could pick a day for all > of us > to do this and that way we can do this as a group. Of course it would > only > be for those who think they would like to participate. If you think > this is > a good idea great.Then please pass it on to the listserver. If you > don't > think it's a good idea thats ok to. I just thought it would be a way > we > could all feel as if we did something to let Ceci know how we feel. As > I am > sure she will be watching us from heaven. > > Thanks for your opinion > > Karen & Bill Foster ========================================================================= Date: Tue, 24 Mar 1998 09:06:09 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jenngram <Jenngram@AOL.COM> Subject: Re: FW: An idea Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
What a wonderful idea..we would love to be a part of it!!!
Jenn(Tampa/St. Pete) ========================================================================= Date: Tue, 24 Mar 1998 10:19:32 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Copperhd87 <Copperhd87@AOL.COM> Subject: Thank you to everyone Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Thank you to everyone for your encouraging words of support and advice on Mitchell's upcoming surgery. Traveling 500 miles and being away from home from 2 weeks is not exactly on my list of favorite things to do. However, your words of encouragement and praise of Dr. Marsh have very much reaffirmed our decision that we are doing the right thing for Mitchell. His needs, of course, far outweigh ours.
Thanks,
Resa ========================================================================= Date: Tue, 24 Mar 1998 10:29:50 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: Copperhd87 <Copperhd87@AOL.COM> Subject: Helmet Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Dr. Marsh described the helmet Mitchell is to wear as "protective." He will not wear it to sleep in. When we were in the waiting room, we saw several children in white helmets with holes. They appeared to be made of hard foam, not acrylic plastic like Mitchell's last helmet which was meant for reshaping. BTW, that previous helmet did not work for us (obviously). It did a nice job on the back of his head, but it also was pushing his forehead further out--the most important thing we wanted to correct. We could see change in just a couple of days. Really! He wore the helmet only about two weeks because of the increased "bossing" of his forehead. The foam helmets don't look like they will be as hot as the plastic, but I wish it was winter instead of summer. Dr. Marsh said he would wear it for 3 months. I don't know if it will be custom fit or not. I'm always reluctant to approach someone to talk about what may be a common medical concern with our children, so I did not talk with any of the other parents about their helmets in Dr. Marsh's office. However, I did overhear two mothers talking about making a strap cover to prevent rubbing under their child's chin. I plan to make such a cover whenever we get the helmet. Sounded like a good idea to me. Our insurance company gave us a hard time about the helmet. They finally paid when it was described as a protective device. They would not have paid if they had known it was for "cosmetic purposes." Well, that's all I know about helmets.
Resa ========================================================================= Date: Tue, 24 Mar 1998 10:34:55 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: Copperhd87 <Copperhd87@AOL.COM> Subject: Cranial vs mid-face Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Dr. Marsh described Mitchell's surgery as a cranial reconstruction. Dr. Salyer called it a cranial vault. Mitchell's skull will be completly removed, cut into pieces and put back together like a puzzle using screws and plates and then reattached. It is similar to the suture release, but much more extensive. Mitchell's face is perfect, except for the protusion of his forehead. As I understand it, a mid-face advancement involves the eye, cheek and nose area. Dr. Marsh will not do anything there with Mitchell. I'm sure someone else could more accurately describe the mid-face procedures.
Resa ========================================================================= Date: Tue, 24 Mar 1998 10:34:06 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: ROBIN L HILL <CARMENRAE@PRODIGY.NET> Subject: First Cranial Surgery MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit
Hello Everyone,
Carmen is scheduled to have her first cranial surgery on July 21st and I am hoping you can give me some information. I am so confused, overwhelmed, scared, etc.
We had our first appointment with the cranial facial team in February and I walked into a room filled with doctors and was basically speechless through the entire appointment. My impression of the appointment was that it was to get acquainted with the team and to receive some information regarding Carmen's first surgery. However, the doctors kept asking me if I had any questions rather than explaining what was wrong with our little girl and what they were going to do to fix it. I'm not sure if they didn't want to go into too much detail at that appointment because the surgery was still so far away or what. But now that it is over a month later, I am wondering why they didn't give me more information.
Our next appointment is scheduled for April 15th and I would like to go to this appointment with a little more information so I will be able to ask questions. Can some of you tell me what your child's first cranial surgery was called? BASICALLY what the procedured involved? What the expected outcome of the surgery was (ie.. what the procedure was FIXING?? for lack of a better word)
I have really been a basket case over all of this and I have started to doubt the doctors' competence because of the lack of information provided to me at the last appointment. I am hoping with a little information from you, I will be better able to speak to these doctors more intelligently at our next visit.
Sorry for rambling and thanks in advance for all your help.
Robin Hill
P.S. We found out last week that Carmen has hydrocephalus and will be getting a shunt some time in April. Please keep her in your prayers. Thanks and God Bless all of you. ========================================================================= Date: Tue, 24 Mar 1998 11:27:15 -0600 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Bob Horning <Bob.Horning@CORP.HONEYWELL.COM> Subject: Re: First Cranial Surgery
>From: ROBIN L HILL on Tue, Mar 24, 1998 9:47 AM
>However, the doctors kept asking me if I had any questions rather >than explaining what was wrong with our little girl and what they >were going to do to fix it.
Robin
One of the best things you can learn to do (and I think everyone here would agree, you have to force yourself to do it because it doesn't come naturally) is to ask your doctor questions and expect answers from them. DO NOT worry about whether they sound like dumb questions. And ask again if you didn't understand the answer. That's probably even a little tougher to do with the big team, but it is true no matter how few or many doc's you are dealing with. For the most part, they don't mind. They don't necessarily intend to intimidate you (there are always a few bad apples, but most aren't) but the relationship is definitely unequal. We often go in with our questions written down so that we don't forget to ask. You don't have to be bossy or rude to ask the questions, but just be firm enough to not leave until you get your questions answered.
You should also have the same attitude when you are in the hospital. Most of us end up staying with or near our kids during their stay, and know as well as the nurses what needs to be done. Don't be afraid to ask (demand?) for something if your child needs it.
Bob Horning ========================================================================= Date: Tue, 24 Mar 1998 09:34:32 PST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jason Burdette <jlburdett@HOTMAIL.COM> Subject: Re: Hi Content-Type: text/plain
>From owner-apert@listserv.aol.com Tue Mar 17 03:57:52 1998 >Received: from LISTSERV.AOL.COM by listmail.aol.com (LSMTP for Windows NT v1.1a) with SMTP id <0.DB65F0C0@listmail.aol.com>; Tue, 17 Mar 1998 6:49:39 -0500 >Received: from LISTSERV.AOL.COM by LISTSERV.AOL.COM (LISTSERV-TCP/IP release > 1.8c) with spool id 75469 for APERT@LISTSERV.AOL.COM; Tue, 17 Mar > 1998 06:57:55 -0500 >Received: from imo19.mx.aol.com (imo19.mail.aol.com [172.31.32.41]) by > listserv.aol.com (8.8.8/8.8.8) with ESMTP id GAA00576 for > <APERT@LISTSERV.AOL.COM>; Tue, 17 Mar 1998 06:57:55 -0500 (EST) >Received: from Jenngram@aol.com by imo19.mx.aol.com (IMOv13.ems) id FTFCa14703 > for <APERT@LISTSERV.AOL.COM>; Tue, 17 Mar 1998 06:57:38 -0500 (EST) >Mime-Version: 1.0 >Content-type: text/plain; charset=US-ASCII >Content-transfer-encoding: 7bit >X-Mailer: AOL 3.0 for Windows 95 sub 18 >Message-ID: <30d4adf8.350e6534@aol.com> >Date: Tue, 17 Mar 1998 06:57:38 EST >Reply-To: Information exchange and Internet safe haven for Apert Syndrome > and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> >Sender: Information exchange and Internet safe haven for Apert Syndrome > and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> >From: Jenngram <Jenngram@AOL.COM> >Subject: Re: Hi >To: APERT@LISTSERV.AOL.COM > >I wanted to welcome Jason to the group. I ma sure your knowledge and >experience will help us tremondously and give insight to how our children will >feel and think about things in the future. > >Welcome >Jennifer Graham(Tampa/St. Pete) >
HI MY NAME IS JASON
I HAD SURGERY ON MY EYES AND HANDS AND MY HEAD AND I AM HAPPY THAT YOU LET ME IN THE GROUP.THE THING I LIKE THE MOST IS MY FRIENDS ON THE HOT MAIL.THE HOT MAIL IS THE BEST THING FOR ME.
JASON
______________________________________________________ Get Your Private, Free Email at http://www.hotmail.com ========================================================================= Date: Tue, 24 Mar 1998 09:29:55 -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: Helmet Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
Resa, (and other newer families too...)
>Our insurance company gave us a hard time about the helmet. They finally >paid when it was described as a protective device. They would not have paid >if they had known it was for "cosmetic purposes."
Just a thought, do you have a case manager for Mitchell through your insurance company? You have the right to have one and it is a lot easier to work through a case manager to get the necessary things that Mitchell is going to need for his medical treatments. Trying to deal with insurance companies "front line staff" can be quite a challenge to get what you need approved. We have learned it is much easier to deal with a single case manager. They are usually willing to work WITH the family regarding a persons medical plan.
It has really helped us.
Good luck! Robyn Johnston ========================================================================= Date: Tue, 24 Mar 1998 13:09:32 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Don Sears <dsears@SCRS.STATE.SC.US> Subject: Ceci's Dedication Page MIME-Version: 1.0 Content-Type: text/plain
I was finally able to send updated files to our server for Teeter's Page, and have made a dedication page for Ceci containing the messages from Chris regarding what happened to her and all of the messages sent thru the listserv to the family. If you sent your message privately to the Kilners and want it included on this page, forward it to me at catndon@apert.org and I'll make sure it gets on.
To get to the page, click on the candles or Ceci at the top of Teeter's page, or you can go directly to http://www.apert.org/ceci.htm
---Don ========================================================================= Date: Tue, 24 Mar 1998 15:03:45 -0600 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Carrie Lynn Hobbs-McKenzie <clm@WIN.BRIGHT.NET> Subject: Re: Ceci's Dedication Page MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Don Sears wrote: > > I was finally able to send updated files to our server for Teeter's > Page, and have made a dedication page for Ceci containing the messages
I never had the chance to take a peek at Ceci.
What a beautiful sweety!!! How cute!!!
Again, you're in my thoughts "mom" and "dad". Peace and strength be with you. Let us know how you're doing. Please.
Carrie --
~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*~~* WHO WE ARE! - Home Schooling, Parenting, Photos, Childhood Surgery, Depression & Mothering, WOH & SAH Moms, and MORE! ~~* Sign Our Guest Book and Visit Again! *~~ http://www.angelfire.com/oh/nursecleftbaby/hello.html ~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*~~* ========================================================================= Date: Tue, 24 Mar 1998 17:05:46 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: Copperhd87 <Copperhd87@AOL.COM> Subject: Coping tips: spiritual reading Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
To all, but especially the Kilner family: While on our way to and from St. Louis last week, we listened to a book on tape called "The Hiding Place." The author was Carrie ten Bloom. As Christians, Mark and I found this book very helpful in attempting to understand why bad things happen to good people. I would highly recommend it to anyone struggling with the "why him/her" questions that continue to wrack at my soul. I have found the insights developed in the book have brought me great comfort in dealing with Mitchell's problems and my fears for his upcoming surgery. However, if you are not open to Christianity, you would probably not find this book helpful at all. Our ten year old son and twelve year old daughter also enjoyed the book, though, I'm sure on a different level than us.
Sincerely,
Resa ========================================================================= Date: Tue, 24 Mar 1998 19:27:18 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: CoH 1862 <CoH1862@AOL.COM> Subject: Re: FW: An idea Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Count us in on the balloons also. Diane( Columbia,Tn.) ========================================================================= Date: Tue, 24 Mar 1998 17:41:13 -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: FW: An idea Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
Leanne and Amy, are you in? I am, but I want to confirm the time here. We are on Mountain Time. If that is 4 eastern, then are we two or three hours behind?
Thanks, this is an excellent idea and we will do it. Pat and the Peach in Calgary
> >I think this is an excellent idea, and I would like to suggest that we >DO try to coordinate it - time zones are a small obstacle to a hardy >group like ours. If you would like to participate in the Foster's First >Annual Balloon Release, write what you would like on or attached to a >helium balloon, and let's plan for a release at 4:00 PM Eastern (US) >time on Saturday, March 28, 1998. If this is in the middle of the night >where you live, send your balloon up at 4:00 PM your time. I'll send a >reminder out Friday afternoon. > >> email to: bluenose@telusplanet.net IM: onlypeach shake and shake the ketchup bottle. none will come and then a lot'll ... unknown ========================================================================= Date: Tue, 24 Mar 1998 19:54:46 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jack and Raquel <jara1@BELLSOUTH.NET> Subject: Re: First Cranial Surgery MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
ROBIN L HILL wrote: > > Hello Everyone, > > Carmen is scheduled to have her first cranial surgery on July 21st and I am > hoping you can give me some information. I am so confused, overwhelmed, > scared, etc. > > We had our first appointment with the cranial facial team in February and I > walked into a room filled with doctors and was basically speechless through > the entire appointment. My impression of the appointment was that it was > to get acquainted with the team and to receive some information regarding > Carmen's first surgery. However, the doctors kept asking me if I had any > questions rather than explaining what was wrong with our little girl and > what they were going to do to fix it.
Robin,
When my husband and I went to our daughter Nicole's first and so far only team meeting, it went basically the same way yours went. We were overwhelmed with the different doctors and specialist that came in the room to see her. Also asking us if we had any questions duh! as if we knew anything about Aperts to begin with. But let me tell you we soon started learning. My husband Jack is the referral king, we took off from that meeting and started getting referrals through our pediatricion's office to see the specific doctors individually.
We chose our neurosurgeon, plastic surgeon (cranial), hand surgeon and ENT (not all were at that meeting). We have visits with them monthly and every month that went by the neurosurgeon and plastic surgeon would tell us we could still wait a little longer for surgery.
Our best recomendation is that you do a lot of leg work and make sure you make those individual appointments with your doctors and don't wait for the "team" to call on you. Remember your main concern is your daughter and some times the parents make certain suggestions to the doctors and all of the sudden the doctors agree....gee I guess we must really be on the ball.
Anyway Nicki is almost 6 months old and her first surgery is scheduled for May 7 she will then be 7 months old. Our surgeon calls it cranial vault remodeling. Basically he explained to us that they advance the forehead about 3/4 of an inch and also allow the back of the head to also expand to the back. In other words you take a balloon and push it down a bit from the top and from the bottom and thats how he wants the head to take shape, as opposed to growing upwards like a cone head.
According to our doctor if all goes well that would be the only surgery she would need up until age 5 or 6 where he will preform the mid face advancement. Then he mentioned that the other surgery she would need would be at around age 13 where she would probably need jaw surgery and braces. It's interesting to read the different e-mails and see how every doctor does things differently.
Boy, you get me started and I just go on and on. What I really wanted to say is that if we would have waited for the person in charge of the team meetings to get a hold of us, we would still be waiting, and when we went to that team meeting Nicki was a little over one month old and she is now almost 6 months. Although we are very happy with our doctors and those appointments are on time and basically monthly.
I wish you well and hope that everything is o.k. and turns out fine with the shunt placement. Please keep us posted.
Raquel Miller jara1@bellsouth.net ========================================================================= Date: Tue, 24 Mar 1998 20:04:32 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Mark Smith <dsprado@PENN.COM> Subject: Re: Balloon Release MIME-Version: 1.0 Content-Type: multipart/alternative; boundary="----=_NextPart_000_0040_01BD5760.0F839340"
This is a multi-part message in MIME format.
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Our Friends,
What a wonderful way to express your feelings. I have sent an email to = some of our family and friends encouraging them to participate. We will = be with you all this Saturday.
Mark, Michele, Megan, and Kayla
------=_NextPart_000_0040_01BD5760.0F839340 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>Our Friends,</FONT></DIV> <DIV><FONT color=3D#000000></FONT> </DIV> <DIV><FONT color=3D#000000>What a wonderful way to express your = feelings. I=20 have sent an email to some of our family and friends encouraging them to =
participate. We will be with you all this Saturday.</FONT></DIV> <DIV><FONT color=3D#000000></FONT> </DIV> <DIV><FONT color=3D#000000>Mark, Michele, Megan, and=20 Kayla</FONT></DIV></BODY></HTML>
------=_NextPart_000_0040_01BD5760.0F839340-- ========================================================================= Date: Tue, 24 Mar 1998 20:17:25 -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: Jack and Raquel <jara1@BELLSOUTH.NET> Subject: Balloon Release MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Jack and I will be sending our balloon up, up and away...Thats a great idea.....
Raquel Miller ========================================================================= Date: Tue, 24 Mar 1998 20:34:55 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: ROBIN L HILL <CARMENRAE@PRODIGY.NET> Subject: Balloon Release MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit
We agree that the balloon release is a great idea! We will be out of town, but will participate from Augusta, GA!
Mike, Robin, and Carmen Hill (Newnan, GA) CARMENRAE@PRODIGY.NET ========================================================================= Date: Tue, 24 Mar 1998 19:59:30 -0600 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: JMuggli <jmuggli@CVTV.NET> MIME-Version: 1.0 Content-Type: text/plain; charset="us-ascii" Content-Transfer-Encoding: 8bit
In all the emails I have read lately, I have not heard one thing about the cranial team at Texas Childrens Hospital in Houston. Dr. Stall and Dr. Dawser. Has anyone had any experience with them? Also, has anyone had to have a G tube for the release of gas in your childs stomach? This sounds strange to me. A Concerned Nana, Jennie Muggli ========================================================================= Date: Tue, 24 Mar 1998 21:08:48 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: Yonstein <Yonstein@AOL.COM> Subject: Re: Balloon Release Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
I think the balloon release is a fantastic idea. The Krebs family from NY will be sending our thoughts and wishes to Ceci on Saturday.
Thanks for the idea.
Brian, Janine, Nicholas and Emily ========================================================================= Date: Tue, 24 Mar 1998 21:24:15 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Yonstein <Yonstein@AOL.COM> Subject: Re: First Cranial Surgery Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Dear Robin:
My name is Janine and my daughter Emily is 8 months old. She had her procedure done at 3 months old. It's interesting to read about all the different terms used. I actually just got copies of her hospital record for myself to keep so I would know what happened because at 3 months old I was still in a total fog.
The terms used for her surgery were several. Mainly they called it a bifrontal biparietal craniotomy. They also did a craniectomy, an orbitotomy resection of orbital bandeau, and reconstruction of the forehead, frontal bone. Basically what they did is make an incision from ear to ear. I don't know how graphic you want the description to be, but you can ask me again for it or you can ask your doctors. They literally have to peel back the skin and then they begin the procedure of the sutures.
Emily's supraorbital bone (ridge) was advanced out about a quarter of an inch, I believe. They also did a zigzag cut on her head so that when her hair is wet it won't show as much. It's healed amazingly. They only had to shave her where they did the cut, not the whole head. I know every doctor is different on that. That's the only place you can see she had something done, where the hair is growing back.
Anyway, she also has one side of the lambdoid suture fused, in the back. That is something that will probably have to be corrected also, but they are monitoring that and seeing how she grows.
One thing I will tell you from the practical side is what was told to me which was a great help so it wasn't a shock. Her head was swollen and her eyes were swollen shut for 2 days. She was hooked up to a ventillator and had tubes coming out of every part of her body. But, she recovered beautifully and was home in five days.
I hope that this helps you. If you have any other questions, you can always e-mail me privately at Yonstein @aol.com.
Hope all goes well with the shunt. Just keep taking deep breaths.
Best wishes,
Janine Krebs (NY) ========================================================================= Date: Tue, 24 Mar 1998 21:24:47 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: LUVS2WRTE <LUVS2WRTE@AOL.COM> Subject: Re: FW: An idea Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
There will be balloons over Florida! This is a wonderful idea -
-Andrea ========================================================================= Date: Tue, 24 Mar 1998 20:20:27 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Lisa McGahan <wmcgahan@IX.NETCOM.COM> Subject: Re: First Cranial Surgery MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit
Jack and Raquel-
My daughter, morgan, is 10 weeks old and i have been told by doctors that her first surgery is not until she is one year old. which team of doctors are you seeing and what hospital did you bribg your baby too? did you get more than one opinion? many thanks - lisa
---------- > From: Jack and Raquel <jara1@BELLSOUTH.NET> > To: APERT@LISTSERV.AOL.COM > Subject: Re: First Cranial Surgery > Date: Tuesday, March 24, 1998 7:54 PM > > ROBIN L HILL wrote: > > > > Hello Everyone, > > > > Carmen is scheduled to have her first cranial surgery on July 21st and I am > > hoping you can give me some information. I am so confused, overwhelmed, > > scared, etc. > > > > We had our first appointment with the cranial facial team in February and I > > walked into a room filled with doctors and was basically speechless through > > the entire appointment. My impression of the appointment was that it was > > to get acquainted with the team and to receive some information regarding > > Carmen's first surgery. However, the doctors kept asking me if I had any > > questions rather than explaining what was wrong with our little girl and > > what they were going to do to fix it. > > > Robin, > > When my husband and I went to our daughter Nicole's first and so far > only team meeting, it went basically the same way yours went. We were > overwhelmed with the different doctors and specialist that came in the > room to see her. Also asking us if we had any questions duh! as if we > knew anything about Aperts to begin with. But let me tell you we soon > started learning. My husband Jack is the referral king, we took off > from that meeting and started getting referrals through our > pediatricion's office to see the specific doctors individually. > > We chose our neurosurgeon, plastic surgeon (cranial), hand surgeon and > ENT (not all were at that meeting). We have visits with them monthly and > every month that went by the neurosurgeon and plastic surgeon would tell > us we could still wait a little longer for surgery. > > Our best recomendation is that you do a lot of leg work and make sure > you make those individual appointments with your doctors and don't wait > for the "team" to call on you. Remember your main concern is your > daughter and some times the parents make certain suggestions to the > doctors and all of the sudden the doctors agree....gee I guess we must > really be on the ball. > > Anyway Nicki is almost 6 months old and her first surgery is scheduled > for May 7 she will then be 7 months old. Our surgeon calls it cranial > vault remodeling. Basically he explained to us that they advance the > forehead about 3/4 of an inch and also allow the back of the head to > also expand to the back. In other words you take a balloon and push it > down a bit from the top and from the bottom and thats how he wants the > head to take shape, as opposed to growing upwards like a cone head. > > According to our doctor if all goes well that would be the only surgery > she would need up until age 5 or 6 where he will preform the mid face > advancement. Then he mentioned that the other surgery she would need > would be at around age 13 where she would probably need jaw surgery and > braces. It's interesting to read the different e-mails and see how > every doctor does things differently. > > Boy, you get me started and I just go on and on. What I really wanted > to say is that if we would have waited for the person in charge of the > team meetings to get a hold of us, we would still be waiting, and when > we went to that team meeting Nicki was a little over one month old and > she is now almost 6 months. Although we are very happy with our doctors > and those appointments are on time and basically monthly. > > I wish you well and hope that everything is o.k. and turns out fine with > the shunt placement. Please keep us posted. > > Raquel Miller > jara1@bellsouth.net ========================================================================= Date: Tue, 24 Mar 1998 21:55:08 -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: Lisa McGahan <wmcgahan@IX.NETCOM.COM> MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit
Jennie- My daughter is 10 weeks old and just got a G tube. She got it because she was not gaining weight from bottle feeding (and was having a very hard time breathing through her nose) they did tell me that we could release gas through the tube if we wanted to but there was no need to if she burbs well after feeding. i am no doctor but it seems like a G tube is a pretty drastic measure if the only problem is gas in the belly. Your baby has to go under a general anathesia (sp?) for the operation and there can be complications during or after surgery. anyway - that is what i know. lisa mcgahan
---------- > From: JMuggli <jmuggli@CVTV.NET> > To: APERT@LISTSERV.AOL.COM > Subject: > Date: Tuesday, March 24, 1998 8:59 PM > > In all the emails I have read lately, I have not heard one thing about the cranial team at Texas Childrens Hospital in Houston. Dr. Stall and Dr. Dawser. Has anyone had any experience with them? > Also, has anyone had to have a G tube for the release of gas in your childs stomach? This sounds strange to me. > A Concerned Nana, > Jennie Muggli ========================================================================= Date: Tue, 24 Mar 1998 22:07:53 -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: Lisa McGahan <wmcgahan@IX.NETCOM.COM> Subject: doctor references MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit
Has anyone any experience with Dr. Joe McCarthy at NYU, Dr. Whittaker at Children's Hospital in Philadelphia or Dr. Mulliken at Children's Hospital in Boston? Do you recommend any of them? ========================================================================= Date: Tue, 24 Mar 1998 22:28:02 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: Copperhd87 <Copperhd87@AOL.COM> Subject: Re: First Cranial Surgery Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Robin, My advice to you is this: get thyself to a telephone and schedule another appointment with another team. I think our biggest mistake the first time around was not getting a second opinion. If the cranial remodeling is not until July, you have plenty of time to see another doctor. Possibly you could get the name of the Sears' doctor in South Carolina or one of the doctors in Florida. If you are not comfortable with these doctors in the office, how can you trust them with your precious baby in the operating room. Maybe they don't offer information because they don't know the questions either. The three doctors we saw this time all spent about an hour or longer with us. When we got out of the appointment with Dr. Marsh, they had started sitting chairs in the hallway because the waiting room was so crowded. (Don't tell anyone that was us that caused that--ha ha!) Please get a second opinion and maybe a third or fourth.
Good Luck, (Been there, done that, Resa) ========================================================================= Date: Tue, 24 Mar 1998 22:35:09 -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: ROBIN L HILL <CARMENRAE@PRODIGY.NET> Subject: Re: First Cranial Surgery MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit
Lisa,
Robin and I are using the doctors at Emory University in Atlanta, GA. They actually perform the surgeries at Egleston Children's Hospital. Every case that I have read about has had the first surgery around 6 months. I don't know the specifics of your daughter's case; however, after reading everything on this Website, I would probably inquire as to why they are waiting until she is a year old. I don't know if another doctor would answer your questions over the phone, but I would give it a shot. Our doctor is Dr. Robert J. Wood at The Emory Clinic, PH: (404) 778-4830. One other thing you need to be aware of, is the possibility of Hydrocephalus. Our doctors continually told us that Carmen had no signs of Hydrocephalus; however, the CT Scan showed she did have it. The doctors should order a CT scan early on. If we can be of further help to you, just let us know.
E-Mail Address: CARMENRAE@PRODIGY.NET Good Luck
Mike Hill Newnan, GA
---------- > From: Lisa McGahan <wmcgahan@IX.NETCOM.COM> > To: APERT@LISTSERV.AOL.COM > Subject: Re: First Cranial Surgery > Date: Tuesday, March 24, 1998 8:20 PM > > Jack and Raquel- > > My daughter, morgan, is 10 weeks old and i have been told by doctors that > her first surgery is not until she is one year old. which team of doctors > are you seeing and what hospital did you bribg your baby too? did you get > more than one opinion? many thanks - lisa > > ---------- > > From: Jack and Raquel <jara1@BELLSOUTH.NET> > > To: APERT@LISTSERV.AOL.COM > > Subject: Re: First Cranial Surgery > > Date: Tuesday, March 24, 1998 7:54 PM > > > > ROBIN L HILL wrote: > > > > > > Hello Everyone, > > > > > > Carmen is scheduled to have her first cranial surgery on July 21st and > I am > > > hoping you can give me some information. I am so confused, > overwhelmed, > > > scared, etc. > > > > > > We had our first appointment with the cranial facial team in February > and I > > > walked into a room filled with doctors and was basically speechless > through > > > the entire appointment. My impression of the appointment was that it > was > > > to get acquainted with the team and to receive some information > regarding > > > Carmen's first surgery. However, the doctors kept asking me if I had > any > > > questions rather than explaining what was wrong with our little girl > and > > > what they were going to do to fix it. > > > > > > Robin, > > > > When my husband and I went to our daughter Nicole's first and so far > > only team meeting, it went basically the same way yours went. We were > > overwhelmed with the different doctors and specialist that came in the > > room to see her. Also asking us if we had any questions duh! as if we > > knew anything about Aperts to begin with. But let me tell you we soon > > started learning. My husband Jack is the referral king, we took off > > from that meeting and started getting referrals through our > > pediatricion's office to see the specific doctors individually. > > > > We chose our neurosurgeon, plastic surgeon (cranial), hand surgeon and > > ENT (not all were at that meeting). We have visits with them monthly and > > every month that went by the neurosurgeon and plastic surgeon would tell > > us we could still wait a little longer for surgery. > > > > Our best recomendation is that you do a lot of leg work and make sure > > you make those individual appointments with your doctors and don't wait > > for the "team" to call on you. Remember your main concern is your > > daughter and some times the parents make certain suggestions to the > > doctors and all of the sudden the doctors agree....gee I guess we must > > really be on the ball. > > > > Anyway Nicki is almost 6 months old and her first surgery is scheduled > > for May 7 she will then be 7 months old. Our surgeon calls it cranial > > vault remodeling. Basically he explained to us that they advance the > > forehead about 3/4 of an inch and also allow the back of the head to > > also expand to the back. In other words you take a balloon and push it > > down a bit from the top and from the bottom and thats how he wants the > > head to take shape, as opposed to growing upwards like a cone head. > > > > According to our doctor if all goes well that would be the only surgery > > she would need up until age 5 or 6 where he will preform the mid face > > advancement. Then he mentioned that the other surgery she would need > > would be at around age 13 where she would probably need jaw surgery and > > braces. It's interesting to read the different e-mails and see how > > every doctor does things differently. > > > > Boy, you get me started and I just go on and on. What I really wanted > > to say is that if we would have waited for the person in charge of the > > team meetings to get a hold of us, we would still be waiting, and when > > we went to that team meeting Nicki was a little over one month old and > > she is now almost 6 months. Although we are very happy with our doctors > > and those appointments are on time and basically monthly. > > > > I wish you well and hope that everything is o.k. and turns out fine with > > the shunt placement. Please keep us posted. > > > > Raquel Miller > > jara1@bellsouth.net ========================================================================= Date: Tue, 24 Mar 1998 22:37:48 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Thornq <Thornq@AOL.COM> Subject: Re: doctor references Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Lisa,
I'm sure that Beth Tolsen would agree with me in saying that Dr. Mulliken is a wonderful doctor. He drastically changed my sons life. He didn't do anything until his first surgery. Andrew was three months old and didn't focus on faces, coo, or smile. After his surgery with Dr. Mulliken, he became a different child. I cannot say enough about him. And his partner in crime with Apert, is Dr. Michael Scott (Neurosurgery). A suggestion for hands if you are coming to Boston is Dr. Joe Upton. Please feel free to contact me personally. My e-mail is Thornq@aol.com. Hope to hear from you. I will give you numbers if you so desire.
Good luck in your search.
Lynn Thornquist (Holliston, MA) ========================================================================= Date: Tue, 24 Mar 1998 22:47:51 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: ETolson643 <ETolson643@AOL.COM> Subject: Re: doctor references Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Lisa My son, Tim, who is 16 years old, has been treated by Dr. Mulliken and the craniofacial team at Boston Children's Hospital. It is a great team and Tim's surgeries have gone well. He looks great. We have been involved in the decision making and tried to maintain some control over what is and isn't done. I can't say enough about the care at Children's. Tim just had his midface advancement last January...it was his 13th surgery.
Beth Tolson Boston ========================================================================= Date: Tue, 24 Mar 1998 22:49:46 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: ETolson643 <ETolson643@AOL.COM> Subject: Re: doctor references Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Oh yes...we often had moments of doubt or question. Before Tim's midface advancement we really got cold feet and called Dr. Mulliken's office. The team saw us on a Tuesday night and really tried to help us sort it all out. Always ask questions...even if it means going back several times.
Beth Tolson ========================================================================= Date: Tue, 24 Mar 1998 22:51:24 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: Copperhd87 <Copperhd87@AOL.COM> Subject: Re: Hi Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Dear Jason, Welcome to our group. Jump in. I always ask myself, "What would Mitchell want us to do if he were old enough to tell us?" Maybe you could help answer some of those questions. Let us know how we can help you.
Resa ========================================================================= Date: Tue, 24 Mar 1998 22:43:24 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: Thornq <Thornq@AOL.COM> Subject: Responses & Update Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Dear friends,
I have a few things to say to many of you. Many responses, I thought I would put into one e-mail instead of thousands. Let me get the bad news over with first.
I received an e-mail personally from Marjorie Harmon regarding BJ. It is as follows:
The update: "BJ has had a few relapses and once again is in the Critical Care Unit. BJ's liver began shutting down on Thursday afternoon, they plan on doing a partial removal of the damaged tissue tonight. and then they can begin giving him medication and dialysis to remove some of the toxins from his blood. So now we are back to waiting. I will try to update everyone as soon as I can"
Marjorie had asked me to hold onto the update for a couple of days incase you are wondering why it is late. I wish I did not have to give that kind of information, but I did it as a favor for Marjorie. Please join me in saying a few prayers and send a few kind words her way. I'm sure she could use them.
Next:
Robin,
Andrew's first cranial surgery was when he was three months old. I'm not exactly sure what they called it except for a Cranial Release. They rebuilt the back of his skull and the surgery took about 8 hours. Our first Craniofacial Clinic was about what you experienced. Alot of doctors discussing your child and you feel intimidated to say anything. I have found that you have to ask questions and be firm about getting the answer your looking for. If you do not understand the first answer or they put it in terms you are not familiar, ask again!! Our craniofacial doctor has a habit of walking out of the room before your done asking questions, and I always have alot of questions. Make sure you write down the questions as you think of them. Don't wait until the night before. Keep an ongoing list, mine is on the fridge. If you have many questions for different doctors, get a notebook and put the doctors names at the top of the page and begin writing. Let your husband know where it is, so if he thinks of a question, he too can write it down. Then take the notebook with you and go down your list. Trust me, they will listen. Another thing, when you go into the hospital, do not be afraid to ask the nurses every question in the book. I knew what all the numbers on the air tube machine were and what they meant. If they are doing something with the IV and you have a question, ASK!!!!! I knew every medication they put into my son and knew when the next dose would be. My husband thinks I ask too many questions sometimes, but I feel I have a right to know what they are doing to my child. I have rambled enough, feel free to e-mail me personally if you want.
Next:
Upton Book! I apologize for all the delays, but I am now finally going back to work after being laid up for two weeks after knee surgery. So anticipate me mailing out the copies in the next few days. And again I apologize for the delay. I will also find out about Australia currency and New Zealand currency. Again, that information is at work. I have not forgotten, don't worry.
I believe that is all the rambling I have to do now. I almost forgot, I will send a balloon up in the air on Saturday as well. What color should it be? What was Ceci's favorite color? Don....maybe you could contact the Kilners or Christine could and find that out. I think Ceci would like that. The skies filled with her favorite color.
Again, say a prayer for BJ tonight.
Lynn Thornquist (Holliston, MA) ========================================================================= Date: Tue, 24 Mar 1998 23:01:04 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: ETolson643 <ETolson643@AOL.COM> Subject: Re: cranial release Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
As we discuss different procedures, it seems to me that perhaps the difference in approaches is often due to the differences in each child's physical condition. I am thinking that the cranial release of the back of the skull that some of you are talking about is being done because the suture in the back is fused. Am I correct on that? Tim's only suture release was done at 3 months. His coronal suture only was fused. Also, Tim does not have a shunt so his next cranial procedure was done at nine years of age (forehead remodeling) and then at 16 years (mid face). The other procedures were 8 hand surgeries, one eye muscle surgery, a palate repair, removal of teeth, tonsils, and adenoids....I have lost track!!!
Beth Tolson ========================================================================= Date: Tue, 24 Mar 1998 22:32:22 -0600 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Judy Amerman <jamerman@UTI.COM> Subject: one year? MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit
jamerman@uti.com
I was concerned when you said one year for the first cranial surgery. Nick had his done at 5 months. His doctors at Children's Memorial in Chicago told my husband and I that this surgery is done very young in order to give the brain room to grow. They said if this is not done early it could cause mental retardation. In children that are born with no problems, their bones fuse at roughfully at one year+ I feel if I were you I would get a few more opinions. Judy ========================================================================= Date: Tue, 24 Mar 1998 23:56:42 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Leanne Maclean <lmaclean@NETCOM.CA> Subject: First Cranial Surgery MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii
I have to agree with the comments on not feeling intimidated and asking questions. When we looked into Amy's first craniofacial surgery the first plastic surgeon we met had no time to explain things clearly. Our second visit I was more prepared with written questions and he took more time with us. Still a few days after that appointment more questions came to mind. This doctor had indicated that the surgery needed to be done around the six month age. When I called to inquire about a date he was very blunt and not the least reassuring.
After talking with another parent I decided to take Amy to see a team in Toronto, Ontario (we're in Alberta - it's a four hour flight). I couldn't believe the difference in attitude there. We had professionals volunteering information without having to ask for it. Any question we did have was answered to our satisfaction. At the end of the appointment with the head of the team he said something to me which swayed our decision to take Amy to Toronto for all her major surgeries. He said "We may seem like we are a long way from your home, but we are never further than the end of the telephone."
The surgeon in Toronto also indicated that Amy's surgery didn't need to be done at six months of age because she was thriving and there was no indication of pressure build up. It could be left until she was almost one. It was done successfuly done when she was 11 months old. Don and I have always felt that the meeting with the team in Toronto was a turning point for us. We finally felt that all of Amy's needs could be met and we could relax.
I also have a hard cover notebook that I write questions in and jot notes at each appointment in. I use the same notebook at school interviews... it's an extension of my memory!
Pat According to the time zone map in the front of my telephone book we are two hours earlier here (why did I have it in my mind that we are three?).
Best of luck to everyone, Leanne Alberta, Canada ========================================================================= Date: Wed, 25 Mar 1998 19:54:28 +1200 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Howard & Ann <howrdnan@IHUG.CO.NZ> Subject: Re: First Cranial Surgery Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
Kia Ora Robin
The best thing Amy's Plastic Surgeon did for me was pull apart a plastic skull he had on his desk, showing me what he was going to do and the effect it would have. That was the first time I felt I was really beginning to understand.
Maybe you could ask your surgeon if he has such a skull and suggest he "show-and-tell".
Amy's first craniofacial surgery was done when she was 10 weeks old. The surgeon released her coronal sutures and advanced her midface 1.5cm. Apparently this procedure is not done nowadays due to the increased risk of infection.
We understood this surgery was done to allow room for her brain to grow and to protect her eyes.
The child of one of our NZ Network families was not operated on until she was around a year old and she was fine.
New Zealand is not generally known for its aggressive approach to surgery, and though Amy's P/S acknowledges some US surgeons operate 2 or 3 times before the child reaches puberty, he doesn't believe anything is really gained when compared with doing one reconstruction post-puberty. Obviously the exception would be for major social reasons or for serious functional reasons.
We have been told they will start working with her again around 13yrs with braces as the first step.
I think one needs to keep in mind that although our children all have the same Syndrome they are still individuals with their own individual characteristics and needs. It is important that the surgeons recognise this and don't treat all the children the same way.
Howard wanted me to add in that every surgeon also has their own approach based on their own experience and training.
Hang in there. This is a huge learning process for every parent that has to go through it.
Regards, Ann NZ ========================================================================= Date: Wed, 25 Mar 1998 08:36:35 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jenngram <Jenngram@AOL.COM> Subject: Re: First Cranial Surgery Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
I think the best advice I have ever been given..here actually..was to not be afraid to schedule another appt. to ask questions or address concerns which develop. If you live too ar away, my advice would be to schedule an apt. through a phone conference. I know my husband has done that w/ some of his patients. Then jot down what you want to ask..my biggest problem has always been being unclear..I ask questions and they are usually taken out of context or the doctors don't know what I am really looking for as far as answers go. Most of the doctors nurses are quite good at answering questions and don't mind you calling several times a day...As I often have been known to do..most are women, they have children and understand where you are coming from. They are also quite good at getting the doctor to have a seat in his/her office and talk w/ you..on the phone or in person.
As far as surgery..Jordans first was called a bifrontal craniotomy..to release his 2 fused coronal sutures and give the brain more room to grow (hopefully more forward as opposed to upwards) and an orbital advancement..to do what I call..give his eyebrows a house. They advanced his orbital bandou (sp), which is basically his eyebrow bone 18 mm...this is a lot of overcorrection (although it looks good to us) in order to compensate for the syndrome which tend to cause the work done to reverse and return to its original position. We'll see what the future holds as far aas that goes. Jordan did not wear a helmet..his lamboid sutures were not fused so the back of his head didn't need reshaping......yet.....it is a bit flat from sleeping on it, but not like what you'd see if the sutures were fused..and hes too little to need ofor protection purposes, although he did take a nasty fall trying to stand last night, but conked his forhead, not his infamous soft spot (that is by the way still poking out a bit).
Thats all that has been done so far..hands to follow....
Let me know if you want any more info..I am sure you'll get more than enough from everyone here, and can compose a nice list of topics to discuss w/ your doctors.
Jenn(Tampa/St. Pete) ========================================================================= Date: Wed, 25 Mar 1998 08:45:31 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jenngram <Jenngram@AOL.COM> Subject: Re: doctors in Houston Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
You may want to check w/ Brenda Siebert..son Johnathon...they are from Houston, but are in Dallas having a 2nd cranial surgery. I know some of his procedures were done in Houston, just not sure which ones.
Jenn(Tampa/St. Pete) ========================================================================= Date: Wed, 25 Mar 1998 08:52:29 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: Jenngram <Jenngram@AOL.COM> Subject: Re: First Cranial Surgery Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
After reading Janine's reply I thought of something else..imagine that????? While Jordan eyes being swollen shut was traumatic, for us it was not a shock b/c everyone had been so nice as to warn us. MY biggest shock was how puffy the rest of his little body was..he went in w/ all these fat rolls and came out looking like a tire that was flat and had been inflated. His WHOLE body was swollen..he was about 2 twice his normal size, from the blood and fluid given during surgery. It was all normal and routing, but a shock none the less..of course he peeed (pardon my graphic nature) it off within 48 hrs. Just wanted to warn you..I totally believed it helped us by hearing what all the other kids looked like..that way when we walked into MICU to see him, we were prepared..at least for how hed look..never for seeing your little baby lying there though!!!!
Jenn ========================================================================= Date: Wed, 25 Mar 1998 09:01:04 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jenngram <Jenngram@AOL.COM> Subject: Re: one year? Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
I was told the same regarding giving the brain room to grow and develop..as well as minimizing the "tower head" affect..This may depend on your childs case..and which sutures are fused. Jordans was done at 5 mos...and I was frantic w/ worry that it was too late!!!!!!! but he seems fine!!!
Jenn(Tampa/St. Pete) ========================================================================= Date: Wed, 25 Mar 1998 15:38:01 GMT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Qing Gong <qing@ASRC.CESTM.ALBANY.EDU> Subject: Re: doctor references Content-Type: text/plain Mime-Version: 1.0 Content-Transfer-Encoding: 7bit
We have been going to Boston for Vivi's head and hand surgeries. We highly recommend Dr. Mulliken and the craniofacial team and vivi's hand surgeon Dr. Hurgrueter. In my opinion, Boston Children's hospital is the best. One thing I found and liked about Dr. Mulliken's team is that they tend to take a somewhat more conservative approach in treating their patients, meaning they are very reluctant to try procedures and devices that are considered "experimental". Vivi had her first forehead advancement at 10 1/2 months and another one to remove the plates at 20 months. We were told the only other head surgery she will have will be a mid-face advancement, probably at age 10-12 years. My impression is Dr. Mulliken believes fewer cranio- facial surgical interventions are better for these kids, unless it's medically neccesary. and I personally agree with it.
The above is just my opinion. Good luck with your decision.
Qing Gong (mother to vivi, 2years7months old w/ Apert) ========================================================================= Date: Wed, 25 Mar 1998 15:46:06 GMT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Qing Gong <qing@ASRC.CESTM.ALBANY.EDU> Subject: Re: First Cranial Surgery Content-Type: text/plain Mime-Version: 1.0 Content-Transfer-Encoding: 7bit
I felt exactly the same ("a turning point") after we met with the team in Boston. Making the decision of taking Vivi to Boston for all her surgeries was not easy at the time. My husband and I were both PhD students at the time living on research/teaching assistantship, it's a 3 hour drive from Albany one way, and there was insurance company to deal with before each visit......but it's the best decision I've made all my life. I think it's important to know how many Apert children the team has treated. The craniofacial center in our local area told us they have seen a few Apert babies, when we met with the Boston team we were told they have treated more than 50 of them over the years.
Qing Gong
> I have always felt that the meeting with the team in Toronto was a turning > point for us. We finally felt that all of Amy's needs could be met and > we could relax. > > Best of luck to everyone, > Leanne > Alberta, Canada ========================================================================= Date: Wed, 25 Mar 1998 08:12:23 -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: Scott Pengelly <scottp@EUGENE.COM> Subject: Prayers and good wishes: Scott Comments: To: AOL User <MHTeach102@AOL.COM> Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
Marjorie, David, BJ, Jacob, Joshua and Katie:
Good morning. You all continue to be in my prayers. With the most recent news, please know that you are in my heart, on my mind and in my prayers. I am with you.
Love, Scott ========================================================================= Date: Wed, 25 Mar 1998 16:45:59 GMT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Qing Gong <qing@ASRC.CESTM.ALBANY.EDU> Subject: Re: one year? Content-Type: text/plain Mime-Version: 1.0 Content-Transfer-Encoding: 7bit
Vivi (2 yr 7 mon w/ Apert) had her suture released (forehead advancement) at age 10 1/2 months old. At the time we were concerned its being too late comparing to other kids I heard who were having it done at about 6 months old. Dr. Mulliken at Boston Children's explained to us the reason he preferred to do it at 9-10 months was when the child is too young the bones are too soft so there would be increased chance of having to redo it later, and wait until 9-10 months would not cause mental retardation. As it turned out Vivi's surgery was a success. She has been doing very well developmentally......she walked independently at 14 months, and now at 2 1/2 she is doing all the things other kids of the age are doing except not speaking full sentences... she feeds herself, knows all the colors and numbers 1 to 10 and about half of the alphabets, she signs tons of songs and plays on a computer like an expert. Of course every kid is different and so is every Drs approach. I hope these doctors get together more often to communicate and discuss things. When we first met Dr. Mulliken he just traveled to Europe to meet with some doctors there who treat Apert patients, he commented that European doctors in general were not as aggressive as some of the US doctors in their approach of treating Apert babies.
Qing Gong ========================================================================= Date: Wed, 25 Mar 1998 13:37:14 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: Jenngram <Jenngram@AOL.COM> Subject: Re: Prayers and good wishes Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Marjorie,
You and your family continue to be in our thoughts. May BJ recover form this most recent procedure in the same fashion he has all along. Please keep us updated..we'll be thinking of you
Jenn (Tampa/St. Pete) ========================================================================= Date: Wed, 25 Mar 1998 15:16:05 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Christopher Kilner <ckilner@OSF1.GMU.EDU> Subject: Ceci remembered Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
Hello everyone,
Thank you for all of your support and prayers during this difficult time. Our hearts are warmed by knowing how many people Ceci has touched in her three brief years.
We love the idea of the balloon release and will be participting here in Alexandria, VA with all the balloons Ceci received in the hospital.
Ceci's funeral mass on Monday was beautiful. It was held in the church behind my parents house up in Silver Spring, MD and the burial was down here near our house in Virginia.
My brother-in-law is a Montgomery county police officer in Maryland and has friends on the Fairfax county force here in Virginia. He managed to give Ceci a wonderful...no, an INCREDIBLE tribute by arranging to have the Beltway (yes, the Washington, D.C. Beltway - Interstate 495) closed down for the funeral procession to the cemetery. This is normally reserved for the President and police officers who died in the line of duty.
To anyone who had ever driven in this area, it was a truly surreal event. It also healed the anger in my heart that had built up as I sat in rush-hour traffic trying to get to the 9:30 AM funeral. I was so mad...how could these people just be going on with their lives? Didn't they know my precious daughter had passed away? What was wrong with all of these people?
As I drove behind the hearse with nothing but empty Interstate highway and a police motorcade ahead of me and nothing but a procession of cars with their headlights shining as far as the eye could see behind me, I finally felt that the world had stopped - just as it should have - as a tribute to our Ceci.
Appropriatedly, Ceci was buried in a children's section of the semetery called the "Garden of Angels."
I hope to someday post my brother's beautiful eulogy so more people can understand just how special she was...how much joy she spread...how loved she was... and how many people she touched.
Thank you again for all of the prayers,
Chris, Reggie, and Blair. ========================================================================= Date: Wed, 25 Mar 1998 21:14:42 +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: Cranial Age etc...
Dear Family,
Thought I would throw my two cents in on the age I was for my first cranial surgery - one week old! since my parents are of the "let's not talk about it" opinion, it's hard to get info out of them to tell me what the surgery did. I do know I had a forehead that protruded and caused a deep narrow horizontal canal of sorts. They corrected that and unfused the skull. I will second the motion for everyone to get second and third opinions when their kids are going to have any procedure! Yes, doctors can be a tad bit dry and unsympathetic, but it's up to you, the parents to get the information you need.
I will be out of town attending a basket making convention on Saturday. My balloon will be sent either early or late - sorry. I will continue to pray for Ceci's family!
BJ and his family are always in my prayers. My Bible study group is praying as well (for all of you)
Please pray for my entire family. We are all being tested! My brother's mother-in-law suffered a heart attack on Monday and is in serious condition tonight. The doctors thought she was bleeding internally, but could not find the evidence on the cat scan. My sister-in-law and I are really close and her family is close to me too. We have shared so much together.
They say bad news comes in sets of three, we have exceeded our share!
_____________________________________________________________________ You don't need to buy Internet access to use free Internet e-mail. Get completely free e-mail from Juno at http://www.juno.com Or call Juno at (800) 654-JUNO [654-5866] ========================================================================= Date: Wed, 25 Mar 1998 18:13:51 -0800 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Scott Pengelly <scottp@EUGENE.COM> Subject: Thank you Chris, Reggie and Blair Comments: To: AOL User <MHTeach102@AOL.COM> Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
Dear Chris, Reggie, and Blair:
Thank you so much for your touching words about Ceci's memorial and funeral. You are in my thoughts and prayers. Love, Scott ========================================================================= Date: Wed, 25 Mar 1998 21:22:49 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jack and Raquel <jara1@BELLSOUTH.NET> Subject: First Cranial Surgery MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Hi Lisa,
The team of doctors that we see are with the University of Miami/Jackson Memorial Hospital South Florida Regional Cleft Lip/Palate and Cranial Facial Anomalies Center in Miami, Florida. Yes we have seen different specialists and the doctor we chose as our plastic surgeon is Dr. Anothony Wolfe which is considered to be one of the best in his field and in this type of surgery that our kids need.
According to Dr. Wolfe if we never preform a surgery on Nicki she would be o.k. (brain wise) due to her large soft spot in the upper back of her head. But we wouldn't want her to be a cone head or not have eye sockets therefore the surgery must be preformed. I know that a lot of different factors come into play on whether or not a child should have the surgery and when.
Dr. Wolfe preforms the mid-face advancement at around 5 or 6 years of age. He told us that by experience he has come to the conclusion that the surgery is best done at that age as opposed to the teen years. But a couple of days ago I read in the list-serv that another doctor prefers to do that surgery in the teen years. So basically its differs from doctor to doctor and child to child.
Anyway we'll keep everyone posted on Nicki's surgery.....
Raquel Miller jara1@bellsouth.net ========================================================================= Date: Thu, 26 Mar 1998 00:33:15 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: KTGrace1 <KTGrace1@AOL.COM> Subject: Re: Apert's Testing Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
My daughter and I met with my granddaughter's genetics counselor on Tuesday this week. My daughter too is pregnant for the second time. The only test that can be done with 100% accuracy is the amnio. In the case of my children they see no reason for the amnio as they have no intentions of doing anything one way or the other so the risks to the mother and pregnancy from the amnio aren't appropriate for them. They told us that in order for the risk to be higher than the general population either my daughter or son-in-law would have to have Aperts and as we all know if they did it would be manifested in their physiology since birth. Aperts is not something that you can be a carer for and not manifest physically. We are using doctors and genetisits connected with Arnold Palmer Women and Childrens' Hospital in Orlando, FL. They are all very well respected in their fields. They can however test our Katey and isolate the exact gene affected and then later in her life be able to test her eggs to see if they have the same genetic amnomality. This will help in determining the risk of aperts to her unborn baby. It's all very Sci-Fi to us laymen but the doctors really understand our fears and have been very reassuring. I haven't heard of any cases of reoccurance in the same family between siblings but then we are fairly new to the list. I hope this has been of some help and didn't add more to the confusion and uncertainty. Sincerely, Granny Sherri ========================================================================= Date: Thu, 26 Mar 1998 09:01:08 -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: Balloons for Ceci MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit
Count the Younkin family in on the balloon release also. When I told my mother-in-law about the idea, she cried at the thought of such a tribute for such a little girl. She cried even harder when I told her of the Beltway being closed for the procession. Children have a way of affecting everyone--whether they actually knew them well or not. Are we releasing any particular color of balloon? Let us know if so. Again, to the Kilner family, our thoughts and prayers are with you. ========================================================================= Date: Thu, 26 Mar 1998 11:51:49 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: Jenngram <Jenngram@AOL.COM> Subject: Re: First Cranial Surgery Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Lisa,
Just wanted to laet you know that Jordans surgery was performed here in Tampa Bay, by a Dr. Ernesto Ruas. he did his training at johns Hopkins and the spent several years in Mexico City where he saw many Apert and Crouzan patients. He is fairly conseravative in his surgical approach, and we like that about him. He did only the basics the first time (suture release and orbital advancement). We are waiting to see how Jordan grows for the rest. His jaw, at the moment is alligned properly, an his eyes are not protruding so this poses some debate on how to handle his mid-face. for now we are taking a wait and see approach..possibly waiting until his permanent teeth are in as to make a more informed decision..as long as his self esteem stays as is....he thinks hes a pretty studly 6 mos. old these days. Like Nicole, Jordan had a huge soft spot (posterior fontanelle) in the back/top portion, as well as the anterior one being fairly large and open until after his surgery..where of course he has a HUGE one. The posterior one is still open a bit, but closing I am sure as I type. His also felt his brain would be ok, but would develop the "tower head" if we didn't proceed. Dr. Ruas did comment on how his bones were fairly soft..to be expected w/ a baby so young.
Perhaps our doctors should pay us for this free advertising???????hahahahaha
Let us know if we can be of any further help
Jenn(Tampa/St. Pete) Jenngram@aol.com ========================================================================= Date: Thu, 26 Mar 1998 12:38:06 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: Camous <Camous@AOL.COM> Subject: Re: Apert's Testing Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
In a message dated 98-03-26 01:17:05 EST, you write:
<< In the case of my children they see no reason for the amnio as they have no intentions of doing anything one way or the other so the risks to the mother and pregnancy from the amnio aren't appropriate for them. >>
What they can do is to really look carefully for the cranial and hand characteristics on ultrasound. That will not give definitive diagnosis but should give a clue with a very patient, experienced perinatologist or geneticist at the helm. That could help (in the very unlikely event that lightning does strike twice) in terms of preparation for birth ie watching head size, etc and just general preparedness.
Good luck !! Marianne ========================================================================= Date: Thu, 26 Mar 1998 16:06:07 -0600 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: ize <ize@TACOMA.CEATLABS.OKSTATE.EDU> Subject: Re: An idea MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Dear friends,
I think this is a lovely idea. Our balloon will be sent this saturday to this beautiful angel named Ceci.
The Ize Family. ========================================================================= Date: Thu, 26 Mar 1998 17:32:27 -0600 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: ize <ize@TACOMA.CEATLABS.OKSTATE.EDU> Subject: Thinking of you. MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Dear Marjorie and Family,
We are always thinking of you and wishing that BJ feels strong every day. You are in our prayers. May God bless you and specially BJ.
The Ize Family. ========================================================================= Date: Thu, 26 Mar 1998 17:34:40 -0600 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Judy Amerman <jamerman@UTI.COM> Subject: ballooons MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit
jamerman@uti.com
Balloons wil flying from Illinois
The Amermans ========================================================================= Date: Thu, 26 Mar 1998 18:50:25 -0600 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Tim and Carol Graves <timg@BELLSOUTH.NET> Organization: Home Subject: balloons MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Balloons will be flying from Alabama also !!
Carol Graves ========================================================================= Date: Thu, 26 Mar 1998 20:06:37 -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: Big toe. MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
We would like to know please, if any of you or your child has had any problem with the big toe. Felipe's left big toe is bent to outside and we are having problems to find shoes for him. It is also somehow elevated, it doesn't touche the floor. Felipe doesn't have any problem at all walking or runing. We always buy shoes one or two sizes bigger than his shoe size. The shoes are bigger on the length, but it's narrow on the width. We had an appointment with his orthopedist and he said that the best way to fix it is to remove out his big toe. He also said that it will not affect his balance at all since the toe is elevated. The other way is to remove two small toes and to unbent his big toe on it's place. The doctor said that it is also an option, but it is the hard and painful way to be done. Any way, the surgery is schedule for April first. We decided to do the easiest way which means the first option. We would really appreciate your opinions.
Thanks The Ize Family. ========================================================================= Date: Thu, 26 Mar 1998 20:08:45 -0600 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: ize <ize@TACOMA.CEATLABS.OKSTATE.EDU> Subject: Re: First Cranial Surgery. MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Felipe is 2 1/2 years old. He had his suture released ( forehead advancement) when he was 4 months old, we were told that it is the best time to do this surgery because the bones are soft and it is ease to work on. Another thing is that if it's done later, it may cause retardation because the brain wouldn't have room to grow. The back of his head didin't need reshaping. Felipe did not wear the helmet. The surgery was well done and we are pleased with the results. We were told that he should have another surgery when he is a teenager. Felipe is doing fine, he started walking when he was 13 months old. You may keep in mind that every child is different and every doctor is different although the surgeries are the same. I also think that you should write down all the questions that you may have and bring with you to the appointments. Don't ever go back home before you clear up any concern or any doubt that you may have. It's about your child's safe and that is why the doctors are there for.
The Ize Family from Oklahoma. ========================================================================= Date: Thu, 26 Mar 1998 21:38:12 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: Yonstein <Yonstein@AOL.COM> Subject: Re: Ceci and BJ Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
To the Kilner Family:
It sounds like Ceci's funeral was a tribute to a beautiful angel. I am sure it was a very difficult day for your whole family. You continue to be in my heart and prayers.
The the Harmon Family:
A special prayer for BJ and hopes that he will improve quickly.
Best wishes to all,
Janine Krebs ========================================================================= Date: Thu, 26 Mar 1998 22:16:03 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Thornq <Thornq@AOL.COM> Subject: Re: Big toe. Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Dr. Upton has said the same thing. That many times the big toe is removed and it does not interfere with balance. I think your doing the right thing by just removing the big toe only. Good luck with the surgery.
Lynn Thornquist (Holliston, MA) ========================================================================= Date: Thu, 26 Mar 1998 22:15:48 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Lisa McGahan <wmcgahan@IX.NETCOM.COM> Subject: balloons on saturday MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit
As new members of the group, we will be sending balloons up on Saturday, so there will balloons over western NJ as well. . Did anyone find out Cici's favorite color? - The McGahans (Morgan McGahan - 1/9/98) ========================================================================= Date: Thu, 26 Mar 1998 21:29:52 -0600 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Chad & Denise Graham <cgraham@INFOAVE.NET> Subject: Balloons and prayer MIME-version: 1.0 Content-type: text/plain; charset="us-ascii"
There will be Balloons flying here in Shelbyville, Tennessee. I put the picture of Ceci from Teeters page on the card with a few words. At least we will know that even more people will be touched in some way by our special children like Ceci. We will continue to pray for the Kilner family for some sweet comfort.
Marjorie and family, We will continue to pray for BJ and family. You must be strong loving parents to keep up this fight with such strength. I know you feel weak sometimes, but to us you are all heros!
Denise Graham ========================================================================= Date: Thu, 26 Mar 1998 22:38:10 -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: Lisa McGahan <wmcgahan@IX.NETCOM.COM> Subject: G Tube MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit
my daughter had a G Tube put in at 8 weeks, she is now 11 weeks and gaining weight. however, she cries a lot because she wants to suck on something and cannot have a pacifier (because she cannot breathe through her nose). We have tried cuting a hole in the tip of the open ended pacifiers but she just sucks in air that way and then has gas and also spits up her food. Has anyone any experience with this or ideas? Many thanks. A tired mom of triplets, Lisa McGahan ========================================================================= Date: Thu, 26 Mar 1998 22:51:20 +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: Toes and etc..
Dear Ize Family,
I have not had any of my toes removed. And all are still webbed. Although, when someone asks me, having my feet operated on was my only choice of operations I wish I could have. It is a pain to buy shoes! I am learning, the hard and slow way, that so what if I need to wear different (I was going to say "Granny Shoes" but took into consideration those of us who are grandparents - sorry. At least I am being honest! :-) and not the stylish pumps everyone else is wearing. This has been MY BIGGEST BATTLE!! I dread buying dresses and suits because I know my shoes aren't going to "match". When I wear a dress to work (it's usually jeans and tennis shoes) people tell me I need to "clean up" more often. My response is "this body was made for jeans, t-shirts and tennis shoes. Until I said that today, I realized I wasn't just referring to my comfort in those clothes, that statement is pretty accurate.
I am rambling on. It's hard for me to get to sleep tonight. My thoughts wander from one name to another as I think of each of you. I hope your part of the world is safe.
Warmly, and getting warmer! Joanne, in Ohio
_____________________________________________________________________ You don't need to buy Internet access to use free Internet e-mail. Get completely free e-mail from Juno at http://www.juno.com Or call Juno at (800) 654-JUNO [654-5866] ========================================================================= Date: Thu, 26 Mar 1998 22:54:46 -0600 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Tim and Carol Graves <timg@BELLSOUTH.NET> Organization: Home Subject: big toe MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Nicholas has no big toe on either foot, not because of surgery removal, they just didn't develop. There is only a stub where the big toe should be. Are any other Apert feet this way that anyone knows of? Carol Graves ========================================================================= Date: Fri, 27 Mar 1998 01:10:50 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: DnJJenner <DnJJenner@AOL.COM> Subject: Balloons Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Our LOVE and Balloons will be flying on saturday here in Oregon!!
(((((((((((((((((((All Of You)))))))))))))))))))))))))))
The Jennerjohns ========================================================================= Date: Fri, 27 Mar 1998 01:10:56 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: DnJJenner <DnJJenner@AOL.COM> Subject: Re: big toe Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Carol~
None that I have seen....
Dawn ========================================================================= Date: Thu, 27 Mar 1997 06:43:35 -0800 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Longshot & Darwin <Longshot.Darwin@MCIONE.COM> Subject: Re: Balloons In-Reply-To: <2ca9b80c.351b42ec@aol.com> MIME-version: 1.0 Content-type: text/plain; X-MAPIextension=.TXT; charset=US-ASCII Content-transfer-encoding: 7BIT
Balloons will be flying high over Memphis.
Rachel Fletcher ========================================================================= Date: Fri, 27 Mar 1998 06:57:10 -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: ize <ize@TACOMA.CEATLABS.OKSTATE.EDU> Subject: Re: Big toe MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Lynn,
You are right about Dr. Upton's opinion on that. Felipe should have it done some time ago, but I thought that it was sooooo rude for such a little baby. I still do but Now I know that there is no better way to fix that. By the way, Felipe will continius having five toes any way, because he has six toes on each foot. I think that may be the reason for this big toe to be like that. The other big toe is going to be fixed, but this one is not that bad. It is just a matter of straightening a little bit. Thanks for your impute and thanks to every body else.
Claudia Ize. ========================================================================= Date: Fri, 27 Mar 1998 08:52:41 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Don Sears <dsears@SCRS.STATE.SC.US> Subject: Re: FW: An idea MIME-Version: 1.0 Content-Type: text/plain
That would be 2pm your time.
> -----Original Message----- > From: baconsmith [SMTP:bluenose@TELUSPLANET.NET] > Sent: Tuesday, March 24, 1998 7:41 PM > To: APERT@LISTSERV.AOL.COM > Subject: Re: FW: An idea > > Leanne and Amy, are you in? I am, but I want to confirm the time > here. We > are on Mountain Time. If that is 4 eastern, then are we two or three > hours > behind? > > Thanks, this is an excellent idea and we will do it. > Pat and the Peach in Calgary > > > > >I think this is an excellent idea, and I would like to suggest that > we > >DO try to coordinate it - time zones are a small obstacle to a hardy > >group like ours. If you would like to participate in the Foster's > First > >Annual Balloon Release, write what you would like on or attached to a > >helium balloon, and let's plan for a release at 4:00 PM Eastern (US) > >time on Saturday, March 28, 1998. If this is in the middle of the > night > >where you live, send your balloon up at 4:00 PM your time. I'll send > a > >reminder out Friday afternoon. > > > >> > email to: bluenose@telusplanet.net > IM: onlypeach > shake and shake the ketchup bottle. none will come and then a lot'll > ... unknown ========================================================================= Date: Fri, 27 Mar 1998 09:01:25 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: MHTeach102 <MHTeach102@AOL.COM> Subject: Re: Balloons Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Adding balloons from Texas ========================================================================= Date: Fri, 27 Mar 1998 09:27:53 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> Subject: Re: G Tube Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Lisa,
did the doctors check for reflux? Just curious b/c we had a problem w/ Jordan spitting up and not gaining weight and they tested him..did a ph probe at about 3 weeks and thats what it was. They were about to put in a g-tube and my husband and I said "no"..lets watch him for a few days and see how he does on the meds...sure enough he started gaining...he was 6 lbs at birth and now at 6 mos is 18 lbs.....but he didn't have a problem w/ breathing through his nose all the time..only if its stuffy. Now I don't know if the spitting up is related to swallowing air or just associated w/ food in the tummy. JUst thought I'd ask, b/c it may be that simple of a solution to weight gain problems. I know if Jordans reflux meds need upping, or he has something physical going on..surgery, teething..then he can't keep any food down regardless of his meds...and the docs attribute it to reflux..it gets worse when the body is under stress.
Let mw know if you have any questions
Jenn(Tampa/St. Pete) ========================================================================= Date: Fri, 27 Mar 1998 09:31:21 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jenngram <Jenngram@AOL.COM> Subject: Re: Toes and etc.. Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Joanne
Any luck in a quickie outpatient procedure to help w/ the shoe issue?? If you wanted to that is?? Just curious!!!
Also, please know you and your family have been in our thoughts..and yes..bad luck usually does come in threes..heres hoping for some positive news!!!!
Jenn(Tampa/St. Pete......a sunny, breezy 80 degrees..now if I could just loose some baby weight Iwe may head for some beach time!!!!!! don't hate us too much!!!! Ya'll have slopes up there!!!) ========================================================================= Date: Fri, 27 Mar 1998 07:48:13 -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: Balloons Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
And balloons going up up up for Ceci from Calgary, at 2:00 pm (Thanks Don!) Chris, Reggie And Blair, I just wanted to say thank you for sharing this part of your life with us and for sharing Ceci with us, as well. May the pain of your loss turn to peace very soon.
Pat Bacon, Peach's mommy
Marjorie and BJ: as always, you are in my thoughts so often.
>Adding balloons from Texas > > email to: bluenose@telusplanet.net IM: onlypeach shake and shake the ketchup bottle. none will come and then a lot'll ... unknown ========================================================================= Date: Fri, 27 Mar 1998 10:46:05 +0000 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Comments: Authenticated sender is <jgibson2@POP.erols.com> From: Judy Gibson <jgibson2@EROLS.COM> Subject: Re: G Tube In-Reply-To: <199803270343.VAA29085@dfw-ix6.ix.netcom.com> MIME-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7BIT
> my daughter had a G Tube put in at 8 weeks, she is now 11 weeks and gaining > weight. however, she cries a lot because she wants to suck on something and > cannot have a pacifier (because she cannot breathe through her nose). We > have tried cutting a hole in the tip of the open ended pacifiers but she > just sucks in air that way and then has gas and also spits up her food. Has > anyone any experience with this or ideas? Many thanks. A tired mom of > triplets, Lisa McGahan
She's eventually going to figure out how to get her fingers in her mouth if her elbows aren't fused. This may solve a lot of problems -- she'll be able to suck, but probably not get a good seal so she'll be able to breathe around them, but hopefully not get as much air as with a pacifier with a hole in it. Also, she'll eventually learn to let go and take a breath. Until then, you'd have to monitor carefully.
Fingers or thumbs are really better in a lot of ways than pacifiers: nobody ever choked on a finger, they're cleaner than pacifiers, and they're always available so no middle of the night retrievals are needed. (BTW, I have a Binky baby, so I'm not totally opposed to them -- and they're easier to get rid of than thumbs)
You can speed up the process of learning to get fingers in the mouth by wrapping the baby with her hands near her face. Obviously, you'll have to watch closely to make sure she's not swallowing too much air or sucking for more than a few seconds without taking a breath.
Judy ========================================================================= Date: Fri, 27 Mar 1998 08:53:24 -0800 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "Wittenburg, Mark" <Mark_Wittenburg@TEMPE.GOV> Subject: FW: Balloons MIME-Version: 1.0 Content-Type: text/plain
> Arizona will by flying high as well!!!! Take care Chris, Reggie and > Blair..... > The Wittenburgs > Kathy Wittenburg @ 350-2962 > ========================================================================= Date: Fri, 27 Mar 1998 12:25:11 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: ROBIN L HILL <CARMENRAE@PRODIGY.NET> Subject: Re: G Tube MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit
I agree the fingers (well, in Carmen's case HAND) work well for sucking. My little Carmen doesn't seem to be a pacifier baby, but she has recently found her hand to be the preferable sucking tool. However, she puts her hand so far in her mouth that she gags on it! Of course this has turned into vomitting several times! WOW, the fun begins!!!!!!
---------- > From: Judy Gibson <jgibson2@EROLS.COM> > To: APERT@LISTSERV.AOL.COM > Subject: Re: G Tube > Date: Friday, March 27, 1998 5:46 AM > > > my daughter had a G Tube put in at 8 weeks, she is now 11 weeks and gaining > > weight. however, she cries a lot because she wants to suck on something and > > cannot have a pacifier (because she cannot breathe through her nose). We > > have tried cutting a hole in the tip of the open ended pacifiers but she > > just sucks in air that way and then has gas and also spits up her food. Has > > anyone any experience with this or ideas? Many thanks. A tired mom of > > triplets, Lisa McGahan > > She's eventually going to figure out how to get her fingers in > her mouth if her elbows aren't fused. This may solve a lot of > problems -- she'll be able to suck, but probably not get a good seal > so she'll be able to breathe around them, but hopefully not get as > much air as with a pacifier with a hole in it. Also, she'll > eventually learn to let go and take a breath. Until then, you'd have > to monitor carefully. > > Fingers or thumbs are really better in a lot of ways than > pacifiers: nobody ever choked on a finger, they're cleaner than > pacifiers, and they're always available so no middle of the night > retrievals are needed. (BTW, I have a Binky baby, so I'm not totally > opposed to them -- and they're easier to get rid of than thumbs) > > You can speed up the process of learning to get fingers in the > mouth by wrapping the baby with her hands near her face. Obviously, > you'll have to watch closely to make sure she's not swallowing too > much air or sucking for more than a few seconds without taking a > breath. > > Judy ========================================================================= Date: Fri, 27 Mar 1998 13:45:41 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Mark Smith <dsprado@PENN.COM> Subject: baloon release MIME-Version: 1.0 Content-Type: multipart/alternative; boundary="----=_NextPart_000_004C_01BD5986.A21AD880"
This is a multi-part message in MIME format.
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You can count on us up here in Warren Pennsylvania!!! Already have the helium bottle from my brother-in-law and we will be = filling them this Saturday for release at 4 PM!!!!
our love to all Mark, Michele, Kayla, and Megan
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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>You can count on us up here in = Warren=20 Pennsylvania!!!</FONT></DIV> <DIV><FONT color=3D#000000 size=3D2>Already have the helium bottle from = my=20 brother-in-law and we will be filling them this Saturday for release at = 4=20 PM!!!!</FONT></DIV> <DIV><FONT color=3D#000000 size=3D2></FONT> </DIV> <DIV><FONT color=3D#000000 size=3D2>our love to all</FONT></DIV> <DIV><FONT color=3D#000000 size=3D2>Mark, Michele, Kayla, and=20 Megan</FONT></DIV></BODY></HTML>
------=_NextPart_000_004C_01BD5986.A21AD880-- ========================================================================= Date: Fri, 27 Mar 1998 15:02:40 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: Jenngram <Jenngram@AOL.COM> Subject: Re: pacifiers Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Jordan used to looove his pacifier..as a matter a fact he was very pickey and there as only this one type he would use..needless to say we have tons...but he seems to prefer his hands..both at the same time in fact. He has quite a large mouth..and this has turned into gagging/vomit sessions as well..he sucks so hard in fact he has little hickeys on each hand..and while he doesn't cry for a pacifier in the middle of the night, he sucks so forcefully that it wakes us up...all the way across the house!!!!! So when she finds them..most of the scking problems will be solved..or just begin!!!! hahahhaha
Jenn(Tampa/St. Pete) ========================================================================= Date: Sat, 28 Mar 1998 11:19:38 +1200 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Howard & Ann <howrdnan@IHUG.CO.NZ> Subject: Re: Toes and etc.. Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
Joanne I think ALL our bodies were made for jeans, t-shirts and tennis shoes! The only problem is that fashion and social pressures make us squeeze our feet into shoes that are totally inappropriate and clothes that are uncomfortable.
>My response is "this body was made for jeans, t-shirts and tennis shoes. >Until I said that today, I realized I wasn't just referring to my comfort >in those clothes, that statement is pretty accurate.
Having grown up barefooted and running free my feet do not like the shoes available and rarely do I find anything I can wear two days in a row without pain. We have a lot of imported shoes designed for narrow feet that have probably never paddled naked through the mud and sand, so "Granny" shoes are actually the best (Yay for Grannies!) because they allow room for wider feet and toes that haven't been squeezed into points.
Up until now we have managed with "regular" shoes for Amy but now that she is 7 the shoes available are beginning to taper in at the toes and I think this winter is going to be our first when shoes are going to be a real problem. Fortunately she can wear gumboots to school in wet weather and put slippers on in the classroom.
Her right foot is much higher and a couple of centimetres shorter than her left, and her big toes curl up and in towards the others (no separation between any toes). I think her problem will be the bone that is under the big toes will become painful to walk on. Her orthopaedic surgeon is monitoring the situation (which could mean anything!) and I don't recall he has ever said anything about actually removing the big toe.
Again, we need to remember that each child is different and each surgeon has their own approach they believe is best. Second (and maybe third) opinions are recommended.
Regards, Ann NZ ========================================================================= Date: Fri, 27 Mar 1998 19:51:54 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jack and Raquel <jara1@BELLSOUTH.NET> Subject: Re: big toe MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Tim and Carol Graves wrote: > > There is only a stub where the big toe > should be. Are any other Apert feet this way that > anyone knows of? > Carol Graves
Carol,
Our daughter Nicole's big toe is very short in comparison with the rest of her toes. The nail is very short and wide. The big toe is sort of separate from the rest of the toes that are webbed together. I don't know if it's underdeveloped or that's just the way all of the aperts big toes look. For now we will concentrate on her head and hands, once that is taken care of we will look into the feet. Our hand surgeon even told us we could wait on the feet...
Raquel Miller jara1@bellsouth.net ========================================================================= Date: Fri, 27 Mar 1998 17:53:43 -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: Caden Lee Johnston Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
Hello friends,
Just a quick note to pass on. Caden Lee and I are home after a somewhat rough start at the hospital. I was induced on Tuesday night at 8:00pm and soon went into labor. At 4:00pm Wed. a C-section was performed because he was stressed and my pelvis would not expand to allow him to pass. He came out floppy, but thankfully was revived within munutes. Fortunately, at the time, I was on so many meds I did not know exactly what had happened. We are both at home now and recuperating just fine.
Erin, Brenna and I have now been enjoying our newest addition to the family. Brenna is just thrilled to have a baby brother of her own. :-) She has always loved other baby's. Now she can actually touch and hold her own little brother and giggle out of pure excitement. Caden is a sweet little guy who is extremely cuddley and quiet natured (at least temporarily). A real blessing since I am still pretty wiped out. Our families have been more than wonderful helping Erin and I take care of Brenna through all of this. We are extremely blessed. We are all a little tired but recovering well, and at home now as I felt I would get more rest here than in the hospital.
Hope all is well, Hugs, Robyn, Erin Brenna and Caden Johnston, Eugene, OR
p.s. Our thoughts will be sending a bunch of balloons today, for our little angel Ceci since I am unfortunatley unable to get a balloon at this time.
My Prayers are also for BJ - Hang in their little guy! ========================================================================= Date: Fri, 27 Mar 1998 21:17:36 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> Subject: Re: Caden Lee Johnston Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Robyn,
CONGRATULATIONS on the birth of Caden. Boy..do I remember all to well being doped up on all those meds!! I am so glad everything worked out...it seems as you are getting to be a pro at his difficult birth thing!!! I know your glad to be home and resting..for now at least. I guess little Caden has proved he, like Brenna, is a strong little person..must take after his parents on that one!!! ANd I'll pick up an extrs balloon for ya'll and send it up w/ ours. I don't think Ceci will mind yours coming form a different time zone.
Take care of yourself....rest..and remember..you just had a major operation (doesn't that one sound familiar)!!! Congratulations again on your little boy!!! Let the fun begin..AGAIN!!!!!
Jenn(Tampa/St. Pete) ========================================================================= Date: Fri, 27 Mar 1998 21:35:48 +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>
Jenn,
Once again, I got a huge laugh out of your message, this time at my expense. The words "quickie" and "outpatient" do NOT go together in my world! The last two "outpatient" surgeries I had lasted long into the night because I had negative reactions to the anesthetic and was in complete agony. I can laugh now, because I know how big of a fool I made myself to be and I know everyone within earshot and beyond knew how big of a fool I was! But, yes I have considered having something done. BTW.. I will trade our slopes for your ocean ANY DAY!
It really amazes me on how we can all have the same physical challenge, yet with different characteristics! for instance, I have limited span in my shoulders and elbows, but don't have a problem getting my hand to my mouth. All five of my toes are present, I can even wiggle them to a degree (and my pinkie). The big toe is shorter than the rest. My toenails are a pain to trim. I have to become an contortionist just to reach them. I just find these differences amazing! It just proves the theory to get second and third opinions. Just because one procedure worked with one child, doesn't mean it's right for yours.
FYI.. a vet visit today relieved me of some concerns, I have two healthy, but ornery birds!
Joanne, in WARM, very, very warm, Ohio! 78 degrees!!!!
_____________________________________________________________________ You don't need to buy Internet access to use free Internet e-mail. Get completely free e-mail from Juno at http://www.juno.com Or call Juno at (800) 654-JUNO [654-5866] ========================================================================= Date: Fri, 27 Mar 1998 23:02:25 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: DnJJenner <DnJJenner@AOL.COM> Subject: Feelings... Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Hello everyone, I know we can talk here and say what we are feeling, and tonight as I am printing out Ceci's note to send along with her balloon, I am so torn.... tomorrow we are celebrating our sons brithday, it is today but we had plan to celebrate it on saturday.... I know the world goes on, but I am feeling what Ceci's Dad felt when he was stuck in traffic, I feel I should stop for a bit, and that I am going to do tomorrow, my kids know a little about what we are going to do tomorrow, but I have a feeling they will be asking more questions tomorrow, which we will then answer. I am still feeling really sad right now, and bad about tomorrow... thank-you for listening
Dawn ========================================================================= Date: Fri, 27 Mar 1998 23:40:40 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: foster <foster@ICONTECH.COM> Subject: First Cranial Suegery Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
I have a problem when I read that if a childs first cranial surgery isn't done at so and so months that it will or may cause retardation. I mean no offense to anyone and Of course things vary from doctor to doctor and I agree that if you are not comfortable with your doctors than you need to find someone else. But there are some times when it is not necessary to have this surgery at a few months old. Sometimes there is enough room for the brain to grow and in some cases there is a need for more bone growth if possible to have more to work with when they are working on the upper eye sockets for protection of the eyes. So if it is ok to wait a little longer before having such a major surgery than I say great. Of course when there is not enough room than the sooner the better.
Also, sometimes there is some degree of retardation with or without the surgery. That is one of the possibilities each of us face with our children and is sometimes the way this syndrome works and I hate to think that some parent out there might feel the guilt of a child with some degree of retardation feeling that they are in some way responsible because they did not have a surgery done early enough. God knows we have plenty of things to worry about. There is plenty of places to read about the things associated with aperts and the more you read and the more you research for yourself the better able you will be to make some of these hard decisions. I say plenty meaning there is alot more than a year ago but not as much written about what the best thing to do with these things are.
Surgery is a reality that we have to live with for our guys and then there is love and family and friends and First and foremost gods love .Put all of these things together and we have much more than many others out there and our children are already a step ahead. Well, thats enough of that .
Tomorrow balloons wil be flying from Scranton Pa.
I just want to say welcome into the world to Caden Lee and congrads to all of your family. There is nothing like the joy that a baby any baby brings . Enjoy this wonderful new life.
Hi to everyone and hope everyone is well.
Our prayers are with everyone as always .God bless BJ and his family .
Our Billy is doing very well and is more amazing each and every day. He is doing a little crawling,But he likes to stand and do his Elvis dance which is what his sisters call it,but it is really just his leg shaking because he stands longer than his legs want to.
Well, I sure said enough for ten people so I'll say goodnight to all.
Karen Foster(Scranton Pa.)
P.S. Dawn, I am so sorry that you are torn between and feeling so sad but please enjoy your sons birthday . ========================================================================= Date: Fri, 27 Mar 1998 08:52:26 +0000 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "Joana H. Magno, M.D." <magnomd@ALOHA.NET> Subject: Re: Balloons MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Wouldn't it be wonderful to see balloons flying from all over on Saturday?
With Aloha from Hawaii to all Apert's families around the world!!
Joana Magno ========================================================================= Date: Sat, 28 Mar 1998 17:39:36 +1100 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Carol & Jason <carolh@HOTKEY.NET.AU> Subject: Ballons MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Will be flying balloons in Australia at 4pm our time as I am not sure what the time difference will be.
With love Carol ========================================================================= Date: Sat, 28 Mar 1998 02:11:45 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: MHTeach102 <MHTeach102@AOL.COM> Subject: Ceci's Poem Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
This is the full text o the poem that was posted for Ceci.
He Only Picks The Best Adrienne Vander Woude
Many times we’ve missed you, A million times we’ve cried. If love could have saved you, You never would have died. It breaks our hearts to lose you, But you did not go alone. For a part of us went with you, The day God called you home. We did not see you suffer, There was no cure to be. He closed his arms around you, And whispered come to me. For all that you went through, He saw you needed rest. God’s garden must be beautiful, For He only picks the best! ========================================================================= Date: Sat, 28 Mar 1998 09:01:24 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: Jenngram <Jenngram@AOL.COM> Subject: Re: Feelings... Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
I am not sure how the Kilner family feels right now...I am sure their world continues to be that of sadness, bur perhaps as we all stop today..even for a brief moment in our busy day, we can celebrate Ceci's life instead of grieving her passing. As I am sure her family can testify to..she was a little girl filled with happiness and gave everyone around her such joy. Maybe this is what we can all think about this afternoon.
Jenn9Tampa/St. Pete..you couldn't ask for a more beautiful day to honor a more beautiful little girl) ========================================================================= Date: Sat, 28 Mar 1998 13:00:22 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Mark Smith <dsprado@PENN.COM> Subject: Balloons MIME-Version: 1.0 Content-Type: multipart/related; type="multipart/alternative"; boundary="----=_NextPart_000_0073_01BD5A49.77C73BA0"
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We could not have asked for a more beautiful day to release balloons = here in beautiful NW Pennsylvania!!! =20
The sun is shinning brightly, we have a nice favorable wind, and the = temperature is a nice and mild 80 degrees.
Our thoughts and prayers will be with all of our "family" today, = especially Chris, Reggie, and Blair Kilner.
We will be taking a few photo's at our "release point" and once we have = them developed I will let everyone know. If you would like me to send = them over the Listserve to everyone I will, or I can send them to you = personally vie email.
Our Love to all,
Mark, Michele, Megan, and Kayla dsprado@penn.com
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<META content=3Dtext/html;charset=3Diso-8859-1 = http-equiv=3DContent-Type> <META content=3D'"MSHTML 4.72.2106.6"' name=3DGENERATOR> </HEAD> <BODY background=3Dcid:006b01bd5a73$607d3880$a21816d0@default = bgColor=3D#ffffff> <DIV><STRONG><FONT color=3D#0000ff size=3D4>We could not have asked for = a more=20 beautiful day to release balloons here in beautiful NW = Pennsylvania!!! =20 </FONT></STRONG></DIV> <DIV><STRONG><FONT color=3D#0000ff size=3D4></FONT></STRONG> </DIV> <DIV><STRONG><FONT color=3D#0000ff size=3D4>The sun is shinning = brightly, we have a=20 nice favorable wind, and the temperature is a nice and mild 80=20 degrees.</FONT></STRONG></DIV> <DIV><STRONG><FONT color=3D#0000ff size=3D4></FONT></STRONG> </DIV> <DIV><STRONG><FONT color=3D#0000ff size=3D4>Our thoughts and prayers = will be with=20 all of our "family" today, especially Chris, Reggie, and Blair =
Kilner.</FONT></STRONG></DIV> <DIV><STRONG><FONT color=3D#0000ff size=3D4></FONT></STRONG> </DIV> <DIV><STRONG><FONT color=3D#0000ff size=3D4>We will be taking a few = photo's at our=20 "release point" and once we have them developed I will let = everyone=20 know. If you would like me to send them over the Listserve to = everyone I=20 will, or I can send them to you personally vie = email.</FONT></STRONG></DIV> <DIV><STRONG><FONT color=3D#0000ff size=3D4></FONT></STRONG> </DIV> <DIV><STRONG><FONT color=3D#0000ff size=3D4>Our Love to = all,</FONT></STRONG></DIV> <DIV><STRONG><FONT color=3D#0000ff size=3D4></FONT></STRONG> </DIV> <DIV><STRONG><FONT color=3D#0000ff size=3D4>Mark, Michele, Megan, and=20 Kayla <A=20 href=3D"mailto:dsprado@penn.com">dsprado@penn.com</A></FONT></STRONG></DI= V> <DIV><STRONG><FONT color=3D#0000ff size=3D4></FONT></STRONG> </DIV> <DIV><STRONG><FONT color=3D#0000ff size=3D4></FONT></STRONG> </DIV> <DIV><STRONG><FONT color=3D#0000ff size=3D4></FONT></STRONG> </DIV> <DIV><STRONG><FONT color=3D#0000ff size=3D4></FONT></STRONG> </DIV> <DIV><STRONG><FONT color=3D#0000ff size=3D4></FONT></STRONG> </DIV> <DIV><STRONG><FONT color=3D#0000ff size=3D4></FONT></STRONG> </DIV> <DIV><STRONG><FONT color=3D#0000ff size=3D4></FONT></STRONG> </DIV> <DIV><STRONG><FONT color=3D#0000ff size=3D4></FONT></STRONG> </DIV> <DIV><STRONG><FONT color=3D#0000ff size=3D4></FONT></STRONG> </DIV> <DIV><STRONG><FONT color=3D#0000ff size=3D4></FONT></STRONG> </DIV> <DIV> </DIV></BODY></HTML>
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jamerman@uti.com
It is a beautiful day here in Illinois. The sun is shining and it is 68 degrees. Pretty breezy but nice. Nick will be releasing three balloons this afternoon. He chose a blue on that matches the sky, a pink one because hopefully Ceci liked pink and a beautiful sea green because it was just so pretty. We "met" Ceci on Teeter's page. What a little doll!
Prayers to the Kilners. We are all thinking of you.
Bill, Judy and Nick Amerman ========================================================================= Date: Sat, 28 Mar 1998 15:34:16 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: HAROLD E TYRE <HETSRT@PRODIGY.NET> Subject: HELLO MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit
Hello, we are Sherry and Hal Tyre in Martinez, Ga. We are Carmen Rae Hill's (born January 18 1998 with Apert Syndrome in Atlanta, Ga) grandparents. Our daughter Robin added us to the listserver yesterday. We will be releasing 5 balloons today from our home along with Carmen Rae, Robin and Mike in memory of Ceci. We look forward to sharing information, thoughts and experiences with all of you. ========================================================================= Date: Sat, 28 Mar 1998 16:10:19 -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: HAROLD E TYRE <HETSRT@PRODIGY.NET> Subject: BALLOONS MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit
Our balloons are bon voyage!!!! They were so pretty in the georgeous blue sky! We released them from Martinez, Ga which is just across the river from South Carolina and they seemed to be heading right toward the Sears' home in Columbia!!! Maybe they'll see them.
Robin, Mike and Carmen Rae Hill Sherry and Hal Tyre ========================================================================= Date: Sat, 28 Mar 1998 10:32:27 -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: First Cranial Surgery MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Robin,
Ditto to what Bob had to say. This is your child and you need all of your questions answered before you hand your child over to a team for surgery. There are NO dumb questions and if a surgeon makes you feel that way then maybe you aren't with the right team. You will be dealing with them for a LONG time so set them straight on your needs right from the start. If that involves taking more time with you then so be it. Parents are not given an instant diploma in Apert so we need to ask questions to get educated.
Also, do not fear the doctors. They are not superior to you. Remember, they eat, drink and dress the same as all of us. They are just more educated in a certain field than others. You are probably better educated in areas that a doctor isn't (take it from one who worked for doctors for years, hah! No offense to any doctors out there, but we are ALL human and make mistakes, doctors included). Don't be intimidated!!
Take your list of questions on the 15th and go for it!!
Christine Clark
(on vacation in wet, windy San Diego - not a great start, hah!) ========================================================================= Date: Sat, 28 Mar 1998 16:47:33 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Mark Smith <dsprado@PENN.COM> Subject: BALLOONS!!!!!!!!!!! :*) MIME-Version: 1.0 Content-Type: multipart/alternative; boundary="----=_NextPart_000_0014_01BD5A69.34709020"
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Friends, Well our balloons went up and up and up!!!! We let off 8 = balloons in all. We took along some "extra" balloons to a park near our = home and had 5 children "help" us. =20 We briefly explained to their parents what we were doing and everyone = was more than happy to help. We had a lot of happy children, just the way we want to remember Ceci, = happy! We hope that everyone who participated had a wonderful day with their = family, and in the spirit of the balloon release, had a wonderful day = sharing with "our" family. Have a great weekend.
Mark, Michele, Megan, and Kayla
P.S. Got a new roll of film, was all ready, and.......battery was dead. = Sorry. Hopefully next year we will have it all planned out a little = better. =20
------=_NextPart_000_0014_01BD5A69.34709020 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=3D4>Friends, Well our balloons = went up and up=20 and up!!!! We let off 8 balloons in all. We took along some=20 "extra" balloons to a park near our home and had 5 children=20 "help" us. </FONT></DIV> <DIV><FONT color=3D#000000 size=3D4>We briefly explained to their = parents what we=20 were doing and everyone was more than happy to help.</FONT></DIV> <DIV><FONT color=3D#000000 size=3D4>We had a lot of happy children, just = the way we=20 want to remember Ceci, happy!</FONT></DIV> <DIV><FONT color=3D#000000 size=3D4>We hope that everyone who = participated had a=20 wonderful day with their family, and in the spirit of the balloon = release, had a=20 wonderful day sharing with "our" family.</FONT></DIV> <DIV><FONT color=3D#000000 size=3D4>Have a great weekend.</FONT></DIV> <DIV><FONT color=3D#000000 size=3D4></FONT> </DIV> <DIV><FONT color=3D#000000 size=3D4>Mark, Michele, Megan, and = Kayla</FONT></DIV> <DIV><FONT color=3D#000000 size=3D4></FONT> </DIV> <DIV><FONT color=3D#000000 size=3D4>P.S. Got a new roll of film, = was all=20 ready, and.......battery was dead. Sorry. Hopefully next = year we=20 will have it all planned out a little better. = </FONT></DIV></BODY></HTML>
------=_NextPart_000_0014_01BD5A69.34709020-- ========================================================================= Date: Sat, 28 Mar 1998 19:44:28 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jack and Raquel <jara1@BELLSOUTH.NET> Subject: Balloons!! MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Hi everyone,
We also had a beautiful day her in South Florida. The sun was bright and sunny and the wind was blowing to the west. We released three pink balloons with Ceci's poem attached.
We know that when and where the balloons come down, someone will read the poem and Ceci will have touched people that neither she nor us know. We hope that everyone is doing well. And a special thought goes out the the Harmons and BJ.
Jack, Raquel, Michelle, Steven, Erica and Nicole jara1@bellsouth.net ========================================================================= Date: Fri, 1 Jan 1988 00:43:30 -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: "Christine L. Clark" <apertnet@IX.NETCOM.COM> Organization: Apert Support & Information Network Subject: Balloons MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
From sea to shining sea - we covered the west coast while on vacation here in La Jolla (a community on the coast of San Diego, California).
Michelle and Shannon picked out a pink balloon for Ceci and then they picked out a blue balloon for their Grandma who died last month (she is probably helping to watch over Ceci). We tied babies breath to the strings and a single white rose as a temporary weight. We walked across the street from out timeshare to the beach, took off the roses and released the balloons. After watching the balloons float away the girls threw the roses in the ocean.
As a special note, I would like to mention that it was cold, wet and windy here this morning - we even had some hail - but just before we went out to release the balloons the sun came out and the sky has been blue ever since!!!!
This was a great idea and fitting tribute to a beautiful angel!! We are glad to have participated!
All our best to the Kilner family.
Christine, Jack, Michelle & Shannon Clark ========================================================================= Date: Fri, 1 Jan 1988 01:48:57 -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: doctor references MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
> Has anyone any experience with Dr. Joe McCarthy at NYU, Dr. Whittaker at > Children's Hospital in Philadelphia or Dr. Mulliken at Children's Hospital > in Boston? Do you recommend any of them?
Of all the families I have had contact with in your area I would have to recommened Dr. Mulliken and the team at Children's Hospital in Boston. They certainly know about Apert syndrome. Dr. Upton helped write the book that I refer to as the Apert bible. It is out of print but try to see a copy at a medical library or from your cranio team. It is called "Clinics in Plastic Surgery, Apert Syndrome, April 1991".
Best of luck,
Christine ========================================================================= Date: Sat, 28 Mar 1998 18:20:06 -00800 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Bill Judy Nick Amerman <jamerman@UTI.COM> Subject: Memories Keep Those We Love Close to Us Forever - from Bill Judy Nick Amerman
Bill Judy Nick Amerman has just sent you an electronic card You can pick up your personal message by connecting to the following WWW Address
<A HREF="http://www.bluemountain.com/cards/box3332d/th767nzigryrvjt.htm">http://www.bluemountain.com/cards/box3332d/th767nzigryrvjt.htm</A>
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____________________________________________________________ Accessing your card indicates your agreement with our Website Rules posted at the bottom of the following Web location: (You're welcome to send a free card to someone at this location) http://www.bluemountain.com ========================================================================= Date: Fri, 1 Jan 1988 02:31:27 -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: cranial release MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
> I am thinking that the cranial release of the back of the skull > that some of you are talking about is being done because the suture in the > back is fused. Am I correct on that?
Yes, you are correct. The back sutures that are SOMETIMES fused in Apert are the lambdoids. The common ones are the front coronal sutures. Not all lambdoids need to be released.
Christine ========================================================================= Date: Sat, 28 Mar 1998 21:48:22 -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: BALLOONS. MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Hello to all,
We had a beautiful day here in Oklahoma. It was sunny and bright. We released 4 pink balloons with Cecis's poem attached. I also wrote on them what a beautiful angel she is!!! The Kilner's family are in our thoughts and prayers.
Positive thoughts go to the Harmon's Family. We hope that BJ is getting strong every day. Have a great weekend!
Claudia, Carlos, Felipe and Rafael Ize.