========================================================================= Date: Mon, 1 Dec 1997 07:45:09 -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: sad story MIME-version: 1.0 Content-type: text/plain; charset="us-ascii"

I hope everyone had a wonderful Thanksgiving!! We just had something horrible happen here in Shelbyville, Tn. Just down the road from us, a father of four children, shot all of them exicution style. He also had bombs scattered through the building. The kids were 13, 10, 6, & 4 years old. He said he did it because they were being torn back and forth between him and his wife. They just got divorced a few months ago. He made them get down on their knees and put their heads between their legs. He shot them more that once. I have cried all night. This happened last night. My husband is the director of the EMS here, and when he came home and told me what had happened, I just brokedown. The reason I am telling all of you this, is to ask you to pray for the mother and family members. This will really shake up our little town, when everyone finds out this morning. It is all over the local news. Sorry I couldn't bring better news. Thanks for listening!

Denise Graham ========================================================================= Date: Mon, 1 Dec 1997 09:31:04 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: George Starr <daystar@IGLOU.COM> Subject: Re: sad story MIME-Version: 1.0 Content-Type: multipart/alternative; boundary="----=_NextPart_000_01BCFE3B.D87E1B40" Content-Transfer-Encoding: 7bit

This is a multi-part message in MIME format.

------=_NextPart_000_01BCFE3B.D87E1B40 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit

I have one word! HOW?

George

p.s. They will be in our prayers...

> Subject: sad story > Date: Monday, December 01, 1997 8:45 AM > > I hope everyone had a wonderful Thanksgiving!! We just had > something horrible happen here in Shelbyville, Tn. Just down the road from > us, a father of four children, shot all of them exicution style. He also > had bombs scattered through the building. The kids were 13, 10, 6, & 4 > years old. He said he did it because they were being torn back and forth > between him and his wife. They just got divorced a few months ago. He > made them get down on their knees and put their heads between their legs. > He shot them more that once. I have cried all night. This happened last > night. My husband is the director of the EMS here, and when he came home > and told me what had happened, I just brokedown. The reason I am telling > all of you this, is to ask you to pray for the mother and family members. > This will really shake up our little town, when everyone finds out this > morning. It is all over the local news. Sorry I couldn't bring better > news. Thanks for listening! > > > Denise Graham ------=_NextPart_000_01BCFE3B.D87E1B40 Content-Type: text/html; charset=ISO-8859-1 Content-Transfer-Encoding: quoted-printable

<html><head></head><BODY bgcolor=3D"#FFFFFF">I have one = word! 	HOW? George p.s. They will be in our = prayers... > Subject: sad story > Date: Monday, December = 01, 1997 8:45 AM > > =         I hope everyone had a = wonderful Thanksgiving!!  We just had > something horrible = happen here in Shelbyville, Tn.  Just down the road from > = us, a father of four children, shot all of them exicution style. =  He also > had bombs scattered through the building. =  The kids were 13, 10, 6, & 4 > years old.  He said = he did it because they were being torn back and forth > between = him and his wife.  They just got divorced a few months ago. =  He > made them get down on their knees and put their heads = between their legs. > He shot them more that once.  I have = cried all night.  This happened last > night.  My = husband is the director of the EMS here, and when he came home > = and told me what had happened, I just brokedown.  The reason I am = telling > all of you this, is to ask you to pray for the mother = and family members. > This will really shake up our little town, = when everyone finds out this > morning.  It is all over the = local news.  Sorry I couldn't bring better > news. =  Thanks for listening! > > > =             &= nbsp;           &n= bsp;           &nb= sp;   Denise Graham </body></html> ------=_NextPart_000_01BCFE3B.D87E1B40-- ========================================================================= Date: Mon, 1 Dec 1997 10:24:18 -0800 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Penny Halverson <phalvers@U.WASHINGTON.EDU> Subject: Re: Weekend meeting In-Reply-To: <347DA45F.12F9@ix.netcom.com> MIME-Version: 1.0 Content-Type: TEXT/PLAIN; charset=US-ASCII Content-Transfer-Encoding: 8bit

To Ynve,

I would love to get a copy of an article on this surgeon who is doing research on mobility problems especially with fused elbows.

I've know some parents of children with completely fused elbows that have Crouzon's which is similiar to Apert who like to hear about this too. I myself an affected adult with Crouzon's and have completely fused elbows too. Thanks.

Hugs, Penny

http://www.earthlink.net/~hwy2heaven/

mailto:hwy2heaven@earthlink.net mailto:phalvers@u.washington.edu

> Yngve Wallenius wrote: > > > > Hej > > > > Last weekend we did have a meating in our network her in Sweden. About > > fifteen familys joined together for three days. The first day there was > > an hand surgery who have a lecture about hand and finger surgery. He > > has a great experince of doing artifical joint on Swedish apertkids. > > there was also to orthopedian who spoked about shoe-probleme and > > problemens with imobility in feets, shoulders, elboes. He is planing a > > research of this things. So maybee we can ecept an articale somwhere in > > the future. > > > > hej då frome a cold, winterly Sweden > > > > Yngve > ========================================================================= Date: Mon, 1 Dec 1997 13:42:08 -0800 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Robyn Johnston <robyn@ORDATA.COM> Subject: Re: sad story Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

Denise I am so sorry to hear of these poor children and their family. By heart and prayers goes out to all involved. Robyn Johnston

At 07:45 AM 12/1/97 -0600, you wrote: > I hope everyone had a wonderful Thanksgiving!! We just had >something horrible happen here in Shelbyville, Tn. Just down the road from >us, a father of four children, shot all of them exicution style. He also >had bombs scattered through the building. The kids were 13, 10, 6, & 4 >years old. He said he did it because they were being torn back and forth >between him and his wife. They just got divorced a few months ago. He >made them get down on their knees and put their heads between their legs. >He shot them more that once. I have cried all night. This happened last >night. My husband is the director of the EMS here, and when he came home >and told me what had happened, I just brokedown. The reason I am telling >all of you this, is to ask you to pray for the mother and family members. >This will really shake up our little town, when everyone finds out this >morning. It is all over the local news. Sorry I couldn't bring better >news. Thanks for listening! > > > Denise Graham > ========================================================================= Date: Mon, 1 Dec 1997 22:56:05 +0100 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Yngve Wallenius <wallenius@MBOX303.SWIPNET.SE> Subject: Re: Weekend meeting MIME-Version: 1.0 Content-Type: text/plain; charset=iso-8859-1 Content-Transfer-Encoding: 8bit

Penny Halverson wrote: > > To Ynve, > > I would love to get a copy of an article on this surgeon who is > doing research on mobility problems especially with fused elbows. > > I've know some parents of children with completely fused elbows > that have Crouzon's which is similiar to Apert who like to hear > about this too. I myself an affected adult with Crouzon's > and have completely fused elbows too. Thanks. > > Hugs, Penny > > http://www.earthlink.net/~hwy2heaven/ > > mailto:hwy2heaven@earthlink.net > mailto:phalvers@u.washington.edu > > > Yngve Wallenius wrote: > > > > > > Hej > > > > > > Last weekend we did have a meating in our network her in Sweden. About > > > fifteen familys joined together for three days. The first day there was > > > an hand surgery who have a lecture about hand and finger surgery. He > > > has a great experince of doing artifical joint on Swedish apertkids. > > > there was also to orthopedian who spoked about shoe-probleme and > > > problemens with imobility in feets, shoulders, elboes. He is planing a > > > research of this things. So maybee we can ecept an articale somwhere in > > > the future. > > > > > > hej då frome a cold, winterly Sweden > > > > > > Yngve > >

Hi Penny

Sorry if was indistinct about the article. He has not begun to wright jet, just started his research, but as soon as I know somthing more I let You know.

Hej då

Yngve ========================================================================= Date: Mon, 1 Dec 1997 14:01:40 -0800 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Penny Halverson <phalvers@U.WASHINGTON.EDU> Subject: Re: sad story In-Reply-To: <3.0.32.19971201131919.00def6e8@ordata.com> MIME-Version: 1.0 Content-Type: TEXT/PLAIN; charset=US-ASCII

Hi Denise!

Just got a call from Jana last week and it was sure good to hear from her again and glad to know that Sadie's health is doing better.

I am so sorry to hear about what had happened in your hometown. The relatives and friends involved are in my thoughts and prayers.

I want you to know that from my family, our hearts, thoughts and prayers are with you and your family always. Anytime you would like to talk, please feel to and would love to hear from you too.

With Much Hugs, Penny

http://www.earthlink.net/~hwy2heaven/

mailto:hwy2heaven@earthlink.net mailto:phalvers@u.washington.edu

On Mon, 1 Dec 1997, Denise Graham wrote:

> > I hope everyone had a wonderful Thanksgiving!! We just had > >something horrible happen here in Shelbyville, Tn. Just down the road from > >us, a father of four children, shot all of them exicution style. He also > >had bombs scattered through the building. The kids were 13, 10, 6, & 4 > >years old. He said he did it because they were being torn back and forth > >between him and his wife. They just got divorced a few months ago. He > >made them get down on their knees and put their heads between their legs. > >He shot them more that once. I have cried all night. This happened last > >night. My husband is the director of the EMS here, and when he came home > >and told me what had happened, I just brokedown. The reason I am telling > >all of you this, is to ask you to pray for the mother and family members. > >This will really shake up our little town, when everyone finds out this > >morning. It is all over the local news. Sorry I couldn't bring better > >news. Thanks for listening! > > > > > > Denise Graham > > > ========================================================================= Date: Mon, 1 Dec 1997 17:51:57 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Janine Krebs <Yonstein@AOL.COM> Subject: Hearing/Sad Story

First of all, Chad and Denise, sorry to hear about what happened in your town. It really makes you wonder, doesn't it? I''ll say a prayer for that poor mother of those children.

Hope everyone had a nice Thanksgiving.

We just came back from a BAER test (hearing) for Emily. When she was discharged from NICU (11 days old) they did a hearing test and they said she failed it. They wanted us to do a follow up in 3 months. Do you know how difficult it is to have a 4 month old stay still for 45 minutes, not to mention she had electrodes attached 4 places to her head. Anyway, the tech. wasn't sure if she was able to get anything significant out of the test, and I won't know until Wed.

I was wondering if anyone has had problems with their children's ears and hearing. Emily also has a cleft palate in the soft palate, so there is some concern about minor hearing loss as a result of that. I know that she hears me and her big brother who certainly makes a lot of noise. She responds to him also.

They also said that there was a possible because of her narrowed nasal passages that she failed the test in NICU. And then there is just the congestion that a new baby has from the womb.

Would appreciate any feedback.

Hope all is well with everyone.

Janine

P.S. I am having trouble getting into the new pages that were posted:www.apert.org. ========================================================================= Date: Mon, 1 Dec 1997 17:42:40 -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: Janine Krebs <Yonstein@AOL.COM> Subject: Re: Test

Then you solved the problem because it got through. Welcome back.

Janine Krebs ========================================================================= Date: Mon, 1 Dec 1997 18:52:06 -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: Jennifer Graham <Jenngram@AOL.COM> Subject: Re: ENT

Well, I broke down and took Jordan to the ENT..myself as the referring physician (I hate it when they ask that..imagine me just wanting to take my son to the Dr. based on my own observations???!!)

Anyway, they were concerned about narrowing in his nasal passages, he does have air flow, but the Dr. can onlt see so ar..he's hoping its just tissue or cartlige that can be easily corrected...so next week we are the proud recipients of one CT of the nasal passages, one 3-D CT, and one sleep study!!! Will the next contestant...please come on down. They are giving Jordan sedation for the CT..no matter how hard I pleaded they wouldn't give me any..DARN!!

Anyway..any similar problems out there??? I don't think he has apnea..I just think hes snoring b/c of the left side of his nose has more tissue..geeze I can see it w/ my naked eye!!

Thanx in advance for ya'lls thoughts

Jenn

Oh, in regards to hearing..Jordan seems to hear (selectively..already), but the ENT seemed to be really concerned..I haven't talked to anyone whose kids have a real dramatic hearing problem..but then I haven't talked to a huge # of peole either. I do know Jordan did fine on the hearing test in NICU..the Brain-stem Audio Evoked Response (BAER) one..I think thats what its called..they do it while they are sleeping b/c its so hard to get little ones to hold still...I know its not of much help..hope you get some better responses!!! ========================================================================= Date: Mon, 1 Dec 1997 19:44:45 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Andrea Gartner <LUVS2WRTE@AOL.COM> Subject: Re: Hearing/Sad Story

Janine,

Throughout my life, my ears were my biggest problem. I had constant ear infections. I had tubes put in when I was 8, they helped, but naturally came out years later. My left ear has been my biggest problem. I can barely hear in that ear, and presently wear in the ear hearing aid in it. It helps alot.

-Andrea ========================================================================= Date: Mon, 1 Dec 1997 20:29:02 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: The Stroupes <stroupes@IX.NETCOM.COM> Subject: Fw: Hello again! MIME-Version: 1.0 Content-Type: text/plain; charset="iso-8859-1" Content-Transfer-Encoding: 7bit

Hi all,

Tried to send last week. Now that email is repaired, too lazy to compose new message. Do want to add my thoughts for Chad & Denise & their hometown.

Dan Stroupe

-----Original Message----- From: stroupes <stroupes@> To: Apert List <Apert@listserv.aol.com> Date: Saturday, November 22, 1997 3:46 PM Subject: Hello again!

>Hello again! Have been out of circulation for ages. First work, then >school and soccer. In addition, I crashed our email program at the end of >September and we were without email for 2 or 3 days. Since then, I have >tried to read everyone's news on the list, though not always everyday. >Just a few comments while we have the time. BJ and the Harmons are >constantly in our thoughts and prayers. We always read your news first. >Penny's web site looks great. Good job! We're glad to hear Teeter's >surgery went well and would like to wish Albita and Penny good luck with >their impending surgeries. We wish Albita and Elisabeth a safe trip to the >USA. Welcome Joanne and others. I know we have omitted someone so please >forgive me. >Hope to participate more. >Dan Stroupe (Zach's dad) > > ========================================================================= Date: Mon, 1 Dec 1997 20:31:48 -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: The Stroupes <stroupes@IX.NETCOM.COM> Subject: Fw: Job Search MIME-Version: 1.0 Content-Type: text/plain; charset="iso-8859-1" Content-Transfer-Encoding: 7bit

Joanne,

Again, too lazy to compose new message. Hope this is helpful. -----Original Message----- From: stroupes <stroupes@> To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Date: Saturday, November 22, 1997 3:51 PM Subject: Re:

>Joanne, > >We have not spoken but I have read your news with considerable interest. I >direct a very small non-profit community rehabilitation program in North >Carolina. Though I do not have the resources to offer a position like you >are seeking (indeed, we are eliminating 3 staff positions due to unexpected >funding cuts by the state), I do have one suggestion. North Carolina has >several disability councils and agencies. One, the Governor's Advocacy >Council for Persons with Disabilities sounds like the perfect type of agency >for someone with your PR skills. Does Ohio have a similar agency? If you >would like further information on North Carolina, I will certainly try to >help. However, I must confess I have had a hard time making firm >commitments to folks these days. As time permits, I will try to find other >leads as well. Good luck. Job hunting is definitely no fun. > >Dan Stroupe > >-----Original Message----- >From: J. G. Lindamood <chanan8@JUNO.COM> >To: APERT@LISTSERV.AOL.COM <APERT@LISTSERV.AOL.COM> >Date: Tuesday, November 11, 1997 9:53 AM > > >>Hello everyone! >> >>Teeter, BJ and all of the others who are experiencing medical situations >>this week are in my thoughts, as are all of you on the list serve! I >>sincerely think of you all daily and hope all is well in you lives! >> >>I have begun to job search. An ordeal I dread. The battle to prove >>myself capable is not something I relish. The job I have now is through >>the AmeirCorps VISTA program. The VISTA position is a "volunteer" year >>long position, paid only a small monthly allowance, which averages to be >>$3.00 an hour @ 40 hours a week! OUCH! I cannot afford to renew the >>program! With this job search, I have thought about moving out of Ohio. >>In fact I bought a San Diego Sunday newspaper today. I am serious! It's >>time for me to fly the coop! I guess you can call this a plea, if you >>know of a non-profit organization looking for a public relations person, >>please let me know. >> >>Through my job search, I found a non-profit agency here in Springfield >>with a team of "challenged" (in one way or another) individuals that >>visits schools and gives motivational (if I can do it, you can do it) >>talks to the kids during assemblies. Then they offer workshops about >>different topics, one of them being "disabilities" The offer isn't >>official yet, but I have been asked to join the agency team and visit the >>schools. This opportunity really excites me, as it is what I really, >>really wanted to do when I grew up. However, I didn't think I could get >>paid doing it. So far, I am right, what I have been offered is a >>volunteer position. I'm hoping it will evolve into a paid position >>somehow! My VISTA position ends in February. >> >>Don and Marjorie, keep us updated on you kids! >> >>Joanne in Ohio >> > ========================================================================= Date: Mon, 1 Dec 1997 20:32:45 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: The Stroupes <stroupes@IX.NETCOM.COM> Subject: Fw: shoulders and muscles MIME-Version: 1.0 Content-Type: text/plain; charset="iso-8859-1" Content-Transfer-Encoding: 7bit

-----Original Message----- From: stroupes <stroupes@> To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Date: Saturday, November 22, 1997 3:54 PM Subject: Re: shoulders and muscles

>Janine, > >Zach (age 8 on November 8) has limited range of motion in his shoulders as >well. Though the Craniofacial Team did not alert us to the fact, the >Orthopedic Specialist did. He even photocopied an artilce on Apert Syndrome >and shoulder limitations for us. Zach's range of motion is limited to 50 >percent. Fortunately, one does 90 percent of their activities within that >50 percent. He has a hard time reaching the back of his head when >shampooing and considerable difficulty making Throw Ins in soccer. He will >need to shoot basketball underhanded. To date he has shown little interest >in basketball. The physical therapists have worked on stretching exercises >for years and even taught me how to assist him. Unfortunately, we have been >very negligent in seeing that they are done regularly. Thankfully, his >range of motion has not declined appreciably. > >Dan Stroupe > >-----Original Message----- >From: Janine Krebs <Yonstein@AOL.COM> >To: APERT@LISTSERV.AOL.COM <APERT@LISTSERV.AOL.COM> >Date: Tuesday, November 18, 1997 5:47 PM >Subject: shoulders and muscles > > >>Hi everyoene: >> >>I was speaking with the physical therapist today about Emily. She is very >>tight in her shoulder area. I don't know if it's the muscle or joint or >>what. I was wondering if any of our children have tightness in that area. >> >>I do remember reading something about their bones, having problems with >them, >>although I do know that every child is different. >> >>any infor would be helpful. >> >>Hope everyone is doing well. >> >>Janine Krebs >> > ========================================================================= Date: Mon, 1 Dec 1997 21:07:13 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: The Stroupes <stroupes@IX.NETCOM.COM> Subject: Another Test MIME-Version: 1.0 Content-Type: text/plain; charset="iso-8859-1" Content-Transfer-Encoding: 7bit

It's me again!

Tried to forward some old messages from a week ago. They did not post right away so I am trying to send this message. Sorry for all the tests.

Dan Stroupe ========================================================================= Date: Mon, 1 Dec 1997 18:40:18 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jennifer Graham <Jenngram@AOL.COM> Subject: Re: sad story

Really makes you wonder about the world today. We'll keep them in our thoughts.

Jenn ========================================================================= Date: Mon, 1 Dec 1997 19:01:04 -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: Cat Sears <Irmocat2@AOL.COM> Subject: Re: Hearing/Sad Story

In a message dated 97-12-01 18:36:21 EST, you write:

<< Janine

P.S. I am having trouble getting into the new pages that were posted:www.apert.org. >>

Is anyone else having problems? ========================================================================= Date: Mon, 1 Dec 1997 21:59:04 -0600 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Chad & Denise Graham <cgraham@INFOAVE.NET> Subject: Thanks MIME-version: 1.0 Content-type: text/plain; charset="us-ascii"

I want to thank everyone for their prayers for the family of the 4 children murdered by their father. My hometown is in great mourning. It is so nice to have this support group to go to for a sympathetic ear, even if it doesn't relate to aperts!! Penny, thank you for the kind words. I have meant to write you and tell you that we met with Dr. Cunningham from Seattle. He spoke highly of you and how protective you are of the children they treat. He is in the process of testing Daryl to see if he is a rare case of aperts. It will take a long time to do the testing, but it may help someone else down the road. Hope everyone is preparing for Christmas. There is nothing worse than that last minute shopping and fighting the crowds. I hope I can take some of my own advice!Ha...Ha...

Denise Graham ========================================================================= Date: Mon, 1 Dec 1997 22:00:32 -0800 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Robyn Johnston <robyn@ORDATA.COM> Subject: Re: ENT Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

Hi Jenn, Dejavue! This brings back memories. Brenna had very restricted nasal passages too. Both soft and hard tissue. Our ENT went with stents for her at 4 months because her weight was dropping drastically. She had a really tough time breathing. They did help but, I will be honest, they are a lot of work. As these kiddos (with small noses) grow, their nasal passages become less effective because the bones are fused already and can't keep up with the O2 intake needed. If you want to know more about our experience with stents please feel free to ask. She also had small eustatian tubes in her ears which caused fluid to build up. Once she got PT tubes her hearing returned to normal. Poor thing was trying to listen through fluid! Good luck at the ENT's office.

Robyn & the Plum, Eugene, OR

At 06:52 PM 12/1/97 -0500, you wrote: > Well, I broke down and took Jordan to the ENT..myself as the referring >physician (I hate it when they ask that..imagine me just wanting to take my >son to the Dr. based on my own observations???!!) > >Anyway, they were concerned about narrowing in his nasal passages, he does >have air flow, but the Dr. can onlt see so ar..he's hoping its just tissue or >cartlige that can be easily corrected...so next week we are the proud >recipients of one CT of the nasal passages, one 3-D CT, and one sleep >study!!! Will the next contestant...please come on down. They are giving >Jordan sedation for the CT..no matter how hard I pleaded they wouldn't give >me any..DARN!! > >Anyway..any similar problems out there??? I don't think he has apnea..I just >think hes snoring b/c of the left side of his nose has more tissue..geeze I >can see it w/ my naked eye!! > > >Thanx in advance for ya'lls thoughts > >Jenn > > >Oh, in regards to hearing..Jordan seems to hear (selectively..already), but >the ENT seemed to be really concerned..I haven't talked to anyone whose kids >have a real dramatic hearing problem..but then I haven't talked to a huge # >of peole either. I do know Jordan did fine on the hearing test in NICU..the >Brain-stem Audio Evoked Response (BAER) one..I think thats what its >called..they do it while they are sleeping b/c its so hard to get little ones >to hold still...I know its not of much help..hope you get some better >responses!!! > ========================================================================= Date: Tue, 2 Dec 1997 01:03:57 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Marianne Camous <Camous@AOL.COM> Subject: Re: Hearing/Sad Story

Hi all- Our prayers and thoughts are with your neighbors and the mom, Denise. It's been a bad day on my email-not only your story but a personal posting from my other list (of other Physician Assistants) from a PA working in the hospital where the kids killed in Paducah, Ky were killed. This stuff always seems to crescendo around the holidays- bad time to work in an emergency room!

Meanwhile, Janine... Aperts kids are at risk from hearing loss from two different sources. First, the same process of bone formation that causes the sutures in the skull to fuse, can cause one of the little bones in the ear to fuse into place instead of being able to move normally inresponse to sound waves. This is referred to as stapes fixation. Also, kids with cleft palates and a narrow pharynx (airway in back of the throat) are at risk for recurrent ear infections which can put hearing at risk. they are more apt to have fluid trapped in their middle ear which forms a medium in which bacteria like to grow. I think the hearing test you speak of (BAER) is also referred to as ABR's and Evan had his done under anesthesia during one of his many surgeries. That obviates the need for sedation or trying to keep a kid quiet!! This is most sensitive for neural hearing loss, less for conductive loss. As the kids get older, more routine hearing tests become more helpful. The neural loss is important if kids have had extensive treatment with aminoglycoside antibiotics as they can cause damage to the nerve. The infections, etc will be more apt to cause conductive loss. Hope this helps! We have a "routine" hearing test on our 'dance card" next- just ahead of closing the cleft! Never a dull moment!

Marianne Camous ========================================================================= Date: Mon, 1 Dec 1997 22:16:22 -0800 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Robyn Johnston <robyn@ORDATA.COM> Subject: Re: Thanks Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

Denise, I couldn't help but respond to your message. We just saw Dr. Cunningham (in Seattle) also. he mentioned he was going to meet someone from the south soon that Penny knew. Someday, when Brenna has her next surgery, he wants to check her for a rare case of Crouzons too! Isn't he great. He really knows his stuff to be able to distinguish differences among rare syndromes. He says Brenna has more Aperts characteristics, than Crouzons, but no involvement of the hands or feet. The gene affected is probably FGFR3. FGFR2 is the usual gene for Crouzons/Aperts. This is what he will check with a sample of bone tissue. Sorry to ramble but, I thought it was pretty interesting and wondered about the different variations.

We are still thinking about and praying for the family of the 4 little girls.

Robyn & the Plum Eugene, OR

At 09:59 PM 12/1/97 -0600, you wrote: > I want to thank everyone for their prayers for the family of the 4 >children murdered by their father. My hometown is in great mourning. It >is so nice to have this support group to go to for a sympathetic ear, even >if it doesn't relate to aperts!! > Penny, thank you for the kind words. I have meant to write you and >tell you that we met with Dr. Cunningham from Seattle. He spoke highly of >you and how protective you are of the children they treat. He is in the >process of testing Daryl to see if he is a rare case of aperts. It will >take a long time to do the testing, but it may help someone else down the >road. > Hope everyone is preparing for Christmas. There is nothing worse >than that last minute shopping and fighting the crowds. I hope I can take >some of my own advice!Ha...Ha... > > > Denise Graham > ========================================================================= Date: Tue, 2 Dec 1997 23:12:14 +1300 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial 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: Fw: shoulders and muscles Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

Kia Ora

Janine - further to your query re shoulders.

Amy has just had another assessment with her physio - no further restriction fortunately. She explained it like this:

When we move our arms there is a range of free movement available before the scapula starts shifting to extend our range further. With Amy she only has very small early movement and then the scapula starts moving and allows her most of the range she has available - but of course the scapula can only move in a restricted range. The only way to try and extend muscles/ligaments would be to immobilise the scapula and stretch the arm, which she says is very difficult to do - and to me sounds an horrendous exercise.

Both Physio and OT are pleased with Amy's progress and will continue to monitor six monthly, only becoming pro-active should we become concerned at any signs of further limitation. We continue with swimming, hair brushing (she is growing her hair so it is becoming really good exercise for her), moving the furniture around, no help lifting her school bag onto the top hook, etc, etc, so she is doing her own therapy as part of her daily routine.

Of course she sat there and grinned anxiously through the whole hour and a bit and wouldn't say a word!!

They recommended shoe laces that wrap around themselves rather than bothering trying to get her to tie them herself at this stage. Anyone tried them?

Goodnight, Ann NZ ========================================================================= Date: Tue, 2 Dec 1997 23:12:17 +1300 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial 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: Hearing/Sad Story Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

Greetings from warming-up New Zealand

I did have trouble accessing any of the Apert pages the other day, but the next day got through okay. When trying to access the pages with e.g. esler/esler.htm (I think it says) I had no joy until I removed the second name i.e. just esler instead of esler/esler.htm

I have no idea why of course, but it worked.

Cheers, Ann

At 07:01 PM 1/12/97 -0500, you wrote: >In a message dated 97-12-01 18:36:21 EST, you write: > ><< Janine > > P.S. I am having trouble getting into the new pages that were > posted:www.apert.org. >> > > >Is anyone else having problems? > > ========================================================================= Date: Tue, 2 Dec 1997 08:08:08 -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: Jennifer Graham <Jenngram@AOL.COM> Subject: Re: ENT

Robyn,

Those stents sound like messy business..does part of the apparatus project out of the nose?? I am hoping its just excess tissue which he can laser or something..Joe doesn't want to do anything until after his first surgery..like I said hes getting air..its just so noisy..all the snorting and snoring..prob. bothers me more than him! Fortunately as far as we can tell his eating isn't effected..only for the brief period he had a cold.. and I can hear him getting air while sucking..so who knows

I didn't really care for the demenor of the ENT, but I know hes good...doesn't make me like they guy (personally) any more though. So Jordan and I were to head home for New Orleans Tues..which has had to be postponed until Fri. so he can have all this stuff done..As I am sure you know, this stuff really drains you..I send out my sympathies to everyone who has to do this AND work, b/c taking care of these kids and their various Dr. appts. is a full-time job..I keep hoping it will get better!!

Denise and Marianne:

We are keeping the families of these 2 tragedies in our thoughts..Joe also got a call from a friend in Ky. working the school shooting..The news here in Tampa is equally as depress, so I'll spare everyone..On a happier note, Sun. we did go Christmas shopping and got everything for Joe's side of the family!! YEAH!!!!! Our nephews are 2yrs. and 6 mos...and we spent the most time and money on them..but then I guess its really for the kids..but I tell you its hard to find kids presents..esp when your not the parents..Toys R Us is NOT a store I want to frequent often...Its a madhouse!! and Joe wants one of everything in there!!!! Hope the holiday prep is going well for everyone!!

Jenn ========================================================================= Date: Tue, 2 Dec 1997 09:12:46 -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: George Starr <daystar@IGLOU.COM> Subject: Christmas shopping Re: Thanks MIME-Version: 1.0 Content-Type: multipart/alternative; boundary="----=_NextPart_000_01BCFF02.74819C80" Content-Transfer-Encoding: 7bit

This is a multi-part message in MIME format.

------=_NextPart_000_01BCFF02.74819C80 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit

For once we have 95% of our shopping done, and trying to find the gifts for the other 5%.

Later, George

p.s. Had to brag!!!!

http://www.iglou.com/photos New Tips and Photos added 11/14/97 New and improved design | Photo Tip page, help for the Beginner to Advanced levels.

> Subject: Thanks > Date: Monday, December 01, 1997 10:59 PM > > I want to thank everyone for their prayers for the family of the 4 > children murdered by their father. My hometown is in great mourning. It > is so nice to have this support group to go to for a sympathetic ear, even > if it doesn't relate to aperts!! > Penny, thank you for the kind words. I have meant to write you and > tell you that we met with Dr. Cunningham from Seattle. He spoke highly of > you and how protective you are of the children they treat. He is in the > process of testing Daryl to see if he is a rare case of aperts. It will > take a long time to do the testing, but it may help someone else down the > road. > Hope everyone is preparing for Christmas. There is nothing worse > than that last minute shopping and fighting the crowds. I hope I can take > some of my own advice!Ha...Ha... > > > Denise Graham ------=_NextPart_000_01BCFF02.74819C80 Content-Type: text/html; charset=ISO-8859-1 Content-Transfer-Encoding: quoted-printable

<html><head></head><BODY bgcolor=3D"#FFFFFF">For once we have 95% of our shopping = done, and trying to find the gifts for the other = 5%. Later, George p.s. Had to brag!!!! http://www.iglou.com/photos   New Tips and Photos added 11/14/97 New = and improved design |  Photo Tip page, help for the Beginner to = Advanced levels. > Subject: Thanks > Date: Monday, = December 01, 1997 10:59 PM > > =         I want to thank everyone = for their prayers for the family of the 4 > children murdered by = their father.  My hometown is in great mourning.  It > = is so nice to have this support group to go to for a sympathetic ear, = even > if it doesn't relate to aperts!! > =         Penny, thank you for the = kind words.  I have meant to write you and > tell you that we = met with Dr. Cunningham from Seattle.  He spoke highly of > = you and how protective you are of the children they treat.  He is = in the > process of testing Daryl to see if he is a rare case of = aperts.  It will > take a long time to do the testing, but it = may help someone else down the > road. > =         Hope everyone is = preparing for Christmas.  There is nothing worse > than that = last minute shopping and fighting the crowds.  I hope I can = take > some of my own advice!Ha...Ha... > > > =             &= nbsp;           &n= bsp;           &nb= sp;   Denise Graham </body></html> ------=_NextPart_000_01BCFF02.74819C80-- ========================================================================= Date: Tue, 2 Dec 1997 10:53:29 -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: Weekend meeting MIME-Version: 1.0 Content-Type: text/plain; charset=iso-8859-1 Content-Transfer-Encoding: 8bit

Yngve

We also would be very interested in anything the surgeon learns, since Krista also has fused elbows.

In fact (half joking, half serious here) if he needs people with fused elbows, we'd be happy to have him fly us to Sweden. :-) Both my wife and I have Swedish blood.

Bob Horning _______________________________________________________________________________ From: Yngve Wallenius on Mon, Dec 1, 1997 5:02 PM Subject: Re: Weekend meeting To: Information exchange and Internet safe haven for Apert Syndrome

Hi Penny

Sorry if was indistinct about the article. He has not begun to wright jet, just started his research, but as soon as I know somthing more I let You know.

Hej då

Yngve ========================================================================= Date: Tue, 2 Dec 1997 10:07:08 -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: ENT Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

Hi Jenn,

About the stents, actually the ENT totally concealed them inside her nose - which was great for looks. You couldn't tell she had them except it sounded like she was breathing through straws. It made it a little harder to clean though. It was like trying to find the needle in the haystack - tube in the nasal ;-) Brenna's pediatrician was surprised that you couldn't see them. I guess sometimes they do leave them sticking out. After the second set of stents were removed from Brenna's nose recently, they also removed all of the excess soft tissue. This has seemed to help a lot. There wasn't much soft tissue there, but I guess it was enough to make a difference. Her sleep apnea has improved since then. The new ENT from Seattle has mentioned possibley removing her tonsills and adenoids in the near future. He said as she begins to grow, they will grow too and probably obstruct her airway again. We will see. If Jordan is only noisey and has no other problem I wouldn't recommend getting them, but if he is having trouble with weight or having sleep apnea they are worth considering -or Oxygen too. Colds definaltely are harder on these little ones with little noses (LOWLN). Brenna has one right now too which makes her sound like a train at night. Good luck.

Robyn Johnston Eugene, OR

At 08:08 AM 12/2/97 -0500, you wrote: > Robyn, > > Those stents sound like messy business..does part of the apparatus project >out of the nose?? I am hoping its just excess tissue which he can laser or >something..Joe doesn't want to do anything until after his first >surgery..like I said hes getting air..its just so noisy..all the snorting and >snoring..prob. bothers me more than him! Fortunately as far as we can tell >his eating isn't effected..only for the brief period he had a cold.. and I >can hear him getting air while sucking..so who knows > >I didn't really care for the demenor of the ENT, but I know hes >good...doesn't make me like they guy (personally) any more though. So Jordan >and I were to head home for New Orleans Tues..which has had to be postponed >until Fri. so he can have all this stuff done..As I am sure you know, this >stuff really drains you..I send out my sympathies to everyone who has to do >this AND work, b/c taking care of these kids and their various Dr. appts. is >a full-time job..I keep hoping it will get better!! > >Denise and Marianne: > >We are keeping the families of these 2 tragedies in our thoughts..Joe also >got a call from a friend in Ky. working the school shooting..The news here in >Tampa is equally as depress, so I'll spare everyone..On a happier note, Sun. >we did go Christmas shopping and got everything for Joe's side of the >family!! YEAH!!!!! Our nephews are 2yrs. and 6 mos...and we spent the most >time and money on them..but then I guess its really for the kids..but I tell >you its hard to find kids presents..esp when your not the parents..Toys R Us >is NOT a store I want to frequent often...Its a madhouse!! and Joe wants one >of everything in there!!!! Hope the holiday prep is going well for everyone!! > >Jenn > ========================================================================= Date: Tue, 2 Dec 1997 12:29:59 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Janine Krebs <Yonstein@AOL.COM> Subject: Hearing - Thank you

Thank you to all who replied to my inquiry of hearing problems. I like the idea, Marianne, of having the test conducted during a surgery. I can't imagine trying to have Emily stay that still. The older she gets the harder it's going to be. Also, how old is Evan and what kind of cleft does he have? I was told Emily's will be closed around a year old.

Also, Jenn, Emily was kept in NICU when she was born because of the narrowed nasal passages. She couldn't breathe out of her nose and they had to feed her via tube into her stomach. They opened up enough on their own so she could eat and she seems to be doing ok. She sounds like a Stanley Steamer at times, but we are used to it. I can also see how narrowed it is by looking into her nose. If it's any comfort, she had no problems during her cranial surgery with breathing. I took her to the ENT before the surgery to check and make sure that wouldn't be a problem for her.

Good luck with the doctors and enjoy your visit back home.

Also, Ann, thanks for the update on the shoulders. Hope Amy is doing well. I still have to make the appt. for the orthopedist to check Emily out. Just doesn't seem like there is enough time.

Yesterday the hearing test; today I have the Dpt. of Health coming over at 2:00 to finally test her for the Early Intervention Program. Tomorrow is a follow-up with the neurosurgeon, Thursday is physical therapy and Friday ...is a little rest for me, hopefully.

Best wishes to everyone,

Janine ========================================================================= Date: Tue, 2 Dec 1997 15:12:53 +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: Tim & Carol <timg@BELLSOUTH.NET> Organization: Home Subject: (no subject) MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

Denise... Was just wondering if you all are going to Chattanooga Sunday for the Craniofacial Christmas party??? Carol Graves ========================================================================= Date: Tue, 2 Dec 1997 22:47:47 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: The Stroupes <stroupes@IX.NETCOM.COM> Subject: Test MIME-Version: 1.0 Content-Type: text/plain; charset="iso-8859-1" Content-Transfer-Encoding: 7bit

Fax messed up by IE 4.0. Re-installed & worse. Just testing email again. ========================================================================= Date: Tue, 2 Dec 1997 22:13:57 +0000 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "J. G. Lindamood" <chanan8@JUNO.COM>

Hello to all and best wishes during the holiday shopping! Twenty-three days and counting! All I want is SNOW! P-L-E-A-S-E!

Denise,

It is my prayer that the family you shared with us can feel our love and support! I cannot imagine why someone would do such a horrible thing like that. And then to hear about the catastrophe in Kentucky! What is going on?

Dan, Thank you so very much for reminding me of something that's right under my nose. I recently moved to this community, after living in Dayton for several years. I have not thought of contacting agencies that serve the physically challenged here! There are a few agencies I had crossed paths with in Dayton, but getting a job there would mean a 45 minute commute, one way. Not my idea of a fun time! A friend who works with United Way pointed me to a directory of the non-profit organizations here, I am slowly going through it. Thanks Dan!

Kia Ora Ann,

Please feel free to reproduce my message in your newsletter. It did my heart good to know that together, we might be able to help more people. Can you tell me more about the centre where you work?

Hello everyone!

Ear infections and lack of hearing seems to be a recent topic. I have experienced a hearing loss for the most part of my life. When I had the first set of tubes put in, I heard the car heater for the first time. Since the tubes fell out, (both sets) my hearing isn't perfect. I have a hard time during our staff meetings when someone who has their back to me speaks to the group.

I also snore. My mother claims that the snoring has subsided since the septoplasty surgery two years ago. However, people who have not lived with me still complain when I am spending the night with them. :-( I'm cranky when I'm yelled at in the middle of the night! Like I can help it! Actually, I guess I could try those breath easy strips out on the market!

As far as the range of motion in my shoulders and elbows, it's limited, but I don't know to what degree. I cannot put short necklaces or pierced earrings on myself. They are things I have learned to live without. And I have also learned to have a step stool handy when reaching high shelves or anything above my head.

I've rambled on enough for now. Hope all is well! It's hard to imagine weather warm enough for swimming!

Joanne ========================================================================= Date: Tue, 2 Dec 1997 22:06:17 -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: RARE CASES MIME-version: 1.0 Content-type: text/plain; charset="us-ascii"

Robyn, I mentioned to Dr. Cunningham about you when we meet him. I had read that you had just seen him and he thought Breanna was a rare crouzons. Daryl has the major involvment with the hands and feet, but his face is very mild. He thinks it is more crouzons. We could switch! Ha ha. He was very nice. When we have our next surgery in Jan. we are going to have our surgeon take some of the bone and blood from his hand and put it in this special container that Dr. Cunningham is going to send me. Then we will mail it to him so he can do some studies. Good luck with the plum.

Denise Graham ========================================================================= Date: Tue, 2 Dec 1997 22:06:22 -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: Chad & Denise Graham <cgraham@INFOAVE.NET> Subject: chattanooga MIME-version: 1.0 Content-type: text/plain; charset="us-ascii"

Carol, Yes, we are going to be at the Christmas party Sunday. I think Christine Barnes and Andrew will be there also. I am not sure who else will be there, but it sounds like it is going to be fun! I have been to the museum and it is really neat. Nick should love it!! Hope you are coming. I would like to see you guys again. The first time we meet, we were still spinning out of control. I think everyones first year of having an aperts baby is like that. We are getting ready to have our last hand seperation in Jan. We are very pleased with the results!

Denise Graham ========================================================================= Date: Wed, 3 Dec 1997 00:46:09 -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: Marianne Camous <Camous@AOL.COM> Subject: Re: Hearing - Thank you

Janine, Evan is 17 months old and has a posterior or soft palate cleft. He also has what they call a "Gothic arch". What a description- reminds me of the Cathedral at Rheims and flying buttresses!! More odds and ends of a liberal arts educations gone to waste! ;) He is having his cleft closed in about 2 weeks (and unlike the smug among us I don't have my Christmas shopping done!!) It was originally scheduled for August but was pre-empted for a second cranial release. P is for palate which comes after B for brain, (Yes A is for airway which always comes first!!) I guess S for parental sanity comes way far back...something we all can testify to! We also have an early intervention eval tomorrow! It seems to not matter that he's been in the program in PA for a year- Calif wants to see for themselves! Another day, another appointment!

Ciao! Marianne ========================================================================= Date: Wed, 3 Dec 1997 08:29:14 -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: Jennifer Graham <Jenngram@AOL.COM> Subject: Re: Hearing - Thank you

Mairanne,

I hear you about all of the appts!! I am going insane!! Mon we had the ENT, today its GI, Fri the Pediatrician..next Wed. the sleep study, next Thurs.. the nasal CT and 3-D CT in prep. for surgery in Jan. and next Fri. back to the ENT. Sehhesh..more Dr. visits in 1 week than I have had in my entire life!! I feel like a medical taxi service!!

Hope everyone else is doing well braving the malls..watch out for Shopping rage..seems to be the next likely thing to hit America

Jenn (St. Pete, FL..where it is warm enough to swim, lay out, and houla dance!!) ========================================================================= Date: Wed, 3 Dec 1997 08:49:15 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Don Sears <dsears@SCRS.STATE.SC.US> Subject: Christmas shopping MIME-Version: 1.0 Content-Type: text/plain

What - you mean you aren't all through with your Christmas shopping already? Like SOME people??? -----Don ========================================================================= Date: Wed, 3 Dec 1997 09:25:29 -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: George Starr <daystar@IGLOU.COM> Subject: Re: Christmas shopping MIME-Version: 1.0 Content-Type: multipart/alternative; boundary="----=_NextPart_000_01BCFFCD.656C34A0" Content-Transfer-Encoding: 7bit

This is a multi-part message in MIME format.

------=_NextPart_000_01BCFFCD.656C34A0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit

I Think I might know you a little better than that! I can see you out finishing shopping on Christmas eve!! Or is that me I see out??? Oh well one of us will be out, you can bet on that, Rosemarie and Cathy will see to that!!!

Later George

http://www.iglou.com/photos New Tips and Photos added 11/14/97 New and improved design | Photo Tip page, help for the Beginner to Advanced levels.

> Subject: Christmas shopping > Date: Wednesday, December 03, 1997 8:49 AM > > What - you mean you aren't all through with your Christmas shopping > already? Like SOME people??? -----Don ------=_NextPart_000_01BCFFCD.656C34A0 Content-Type: text/html; charset=ISO-8859-1 Content-Transfer-Encoding: quoted-printable

<html><head></head><BODY bgcolor=3D"#FFFFFF">I Think I might know you a little = better than that! I can see you out finishing shopping on Christmas = eve!! Or is that me I see out??? Oh well one of us will be out, you can = bet on that, Rosemarie and Cathy will see to = that!!! Later George http://www.iglou.com/photos   New Tips and Photos added 11/14/97 New = and improved design |  Photo Tip page, help for the Beginner to = Advanced levels. > Subject: Christmas shopping > = Date: Wednesday, December 03, 1997 8:49 AM > > What - you = mean you aren't all through with your Christmas shopping > = already?  Like SOME people??? -----Don </body></html> ------=_NextPart_000_01BCFFCD.656C34A0-- ========================================================================= Date: Wed, 3 Dec 1997 10:55:47 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Joanne Lindamood <chanan8@JUNO.COM>

Kia Ora Ann!

Hope you got some sleep last night!

Thanks for the information about the centre! It sounds really interesting! I work for a literacy coalition that is based in an old - 1897 - building. I can relate to the significance of free standing and interesting architecture! It is a beautiful building, but it comes with a faulty boiler and sporadic times without heat! When it's 30 degrees out there, heat is a necessity!

I have another favor...can I get a copy of the newsletter when my message appears? I can send my address to your private e-mail address, if you don't mind. Thanks!

My restriction has maintained the same all of my life, however, my strength has increased, which helps! I learn to find creative ways to accommodate for my weaknesses. I have pierced earrings that are one piece, a hoop type, that I can manage. I hope this makes sense. Tell Amy not to panic!

The hearing was a problem from the beginning. I really don't think it has deteriorated. A lot of the loss was due to sinus congestion and lack of drainage areas. The septoplasty surgery, where the doctor straightened the cartledge in my nose has helped, but it's not perfect by any means.

Hope I haven't confused you! Joanne ========================================================================= Date: Thu, 4 Dec 1997 22:51:11 +1300 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial 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> Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

Kia Ora Joanne

Unfortunately I cannot say the PFRC building is beautiful, but it is interesting! Similar thing with the boiler though - but we don't get those very low temperatures. >1897 - building. I can relate to the significance of free standing and >interesting architecture! It is a beautiful building, but it comes with >a faulty boiler and sporadic times without heat! When it's 30 degrees >out there, heat is a necessity!

>I have another favor...can I get a copy of the newsletter when my message >appears? I can send my address to your private e-mail address, if you >don't mind. Thanks! > I was going to ask if you wanted to see it - slipped my halfasleep mind obviously. For each issue I try to include one group based at the Centre and one group working from home. One of the problems with doing newsletters is that people are dreadful about getting their information to you. I was going to include Cleft Lip and Palate support group but they didn't get back to me so I put in our group instead. Decided I could do it because I didn't do an editorial this time! So yes, not a problem, just let me know your address - I'll send the last couple of issues as well. I plan to print it off this weekend, get it copied during the week and have it all ready to send out by Thursday - fortunately I don't have to get involved with the mailing out of it!

Thanks for sharing about your shoulder restrictions and hearing. Did it frustrate you as a child or was it not a problem because it was your "norm" anyway? I often wonder with Amy but try to tell myself she has never known anything else - but I do know she wants hands like mine and she wants her big toe separated so she can wear thongs in summertime! Such a simple wish but such an impossible one. >My restriction has maintained the same all of my life, however, my >strength has increased, which helps! I learn to find creative ways to >accommodate for my weaknesses. I have pierced earrings that are one >piece, a hoop type, that I can manage. I hope this makes sense. Tell >Amy not to panic! >

>The hearing was a problem from the beginning. I really don't think it >has deteriorated. A lot of the loss was due to sinus congestion and lack >of drainage areas. The septoplasty surgery, where the doctor >straightened the cartledge in my nose has helped, but it's not perfect by >any means. >

A friend of Howard's had cartiledge in his nose attended to but it didn't help him either and he doesn't have craniofacial differences. Sounds like a good idea but still has a long way to go to be successful.

Must go - I promised Howard he could have the computer an hour ago and I have a heap of reading to do for a meeting tomorrow.

Have just realised it is three weeks to Christmas today. I haven't even begun the Christmas shopping, no Christmas cards done, and no newsletter to friends. I think it is going to be a New Year letter again!

Bye for now, Ann NZ ========================================================================= Date: Thu, 4 Dec 1997 09:08:47 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jennifer Graham <Jenngram@AOL.COM> Subject: Re: crawling

A quick question about milestones crawling in particular....did ya'll kids have trouble picking their head up and/or crawling?? Jordan can hold his head upright when sitting, but not when on his tummy..I didn't know if the fused hands play a role in not enabling them to do this..since they can't put palms on the floor..at least Jordan can't b/c all 5 of his fingers are fused..he was 4 weeks early so the pediatrician said that it may be a few more weeks yet b/c of his adjusted birthdate..but he does so much ahead of where he should be in other aspects ( ie... can find his hands to munch at will, bats at objects on jungle gym, talks A LOT...) so I was curious about ya'lls experience...I'm calling the developmental people today..they have worked w/ several Aperts kids, so maybe they have a general idea..I'm not worried I'd just like him to do it, I feel like hes flunking a test when I have to tell the Dr. "no, that hes doesn't do...but listen to what he does do.." Ya know how it is..

Thanx in advance for ya'lls imput

Jenn (St. Pete, FL..monsoon country) ========================================================================= Date: Thu, 4 Dec 1997 09:26:29 -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: crawling MIME-Version: 1.0 Content-Type: text/plain

Enjoy it while it lasts. ------Don

> ---------- > From: Jennifer Graham > Sent: Thursday, December 04, 1997 9:08 AM > To: APERT@LISTSERV.AOL.COM > Subject: Re: crawling > > A quick question about milestones crawling in particular....did ya'll > kids > have trouble picking their head up and/or crawling?? Jordan can hold > his head > upright when sitting, but not when on his tummy..I didn't know if the > fused > hands play a role in not enabling them to do this..since they can't > put palms > on the floor..at least Jordan can't b/c all 5 of his fingers are > fused..he > was 4 weeks early so the pediatrician said that it may be a few more > weeks > yet b/c of his adjusted birthdate..but he does so much ahead of where > he > should be in other aspects ( ie... can find his hands to munch at > will, bats > at objects on jungle gym, talks A LOT...) so I was curious about > ya'lls > experience...I'm calling the developmental people today..they have > worked w/ > several Aperts kids, so maybe they have a general idea..I'm not > worried I'd > just like him to do it, I feel like hes flunking a test when I have to > tell > the Dr. "no, that hes doesn't do...but listen to what he does do.." > Ya know > how it is.. > > Thanx in advance for ya'lls imput > > Jenn (St. Pete, FL..monsoon country) > ========================================================================= Date: Thu, 4 Dec 1997 11:27:38 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: George Starr <daystar@IGLOU.COM> Subject: Re: crawling MIME-Version: 1.0 Content-Type: multipart/alternative; boundary="----=_NextPart_000_01BD00A7.A07B1040" Content-Transfer-Encoding: 7bit

This is a multi-part message in MIME format.

------=_NextPart_000_01BD00A7.A07B1040 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit

That sound like something my father would have said, Teach them to walk then they get into everything, teach them to talk and they never shut up!!

Or one of my favorite quotes "Be careful what you wish for you just might get it"

Later, George

> Subject: Re: crawling > Date: Thursday, December 04, 1997 9:26 AM > > Enjoy it while it lasts. ------Don > > > ---------- > > From: Jennifer Graham > > Sent: Thursday, December 04, 1997 9:08 AM > > Subject: Re: crawling > > > > A quick question about milestones crawling in particular....did ya'll > > kids > > have trouble picking their head up and/or crawling?? Jordan can hold > > his head > > upright when sitting, but not when on his tummy..I didn't know if the > > fused > > hands play a role in not enabling them to do this..since they can't > > put palms > > on the floor..at least Jordan can't b/c all 5 of his fingers are > > fused..he > > was 4 weeks early so the pediatrician said that it may be a few more > > weeks > > yet b/c of his adjusted birthdate..but he does so much ahead of where > > he > > should be in other aspects ( ie... can find his hands to munch at > > will, bats > > at objects on jungle gym, talks A LOT...) so I was curious about > > ya'lls > > experience...I'm calling the developmental people today..they have > > worked w/ > > several Aperts kids, so maybe they have a general idea..I'm not > > worried I'd > > just like him to do it, I feel like hes flunking a test when I have to > > tell > > the Dr. "no, that hes doesn't do...but listen to what he does do.." > > Ya know > > how it is.. > > > > Thanx in advance for ya'lls imput > > > > Jenn (St. Pete, FL..monsoon country) > > ------=_NextPart_000_01BD00A7.A07B1040 Content-Type: text/html; charset=ISO-8859-1 Content-Transfer-Encoding: quoted-printable

<html><head></head><BODY bgcolor=3D"#FFFFFF">That sound like something my father = would have said, Teach them to walk then they get into everything, teach = them to talk and they never shut up!! Or one of my favorite = quotes "Be careful what you wish for you just might get = it" Later, George > Subject: Re: = crawling > Date: Thursday, December 04, 1997 9:26 AM > = > Enjoy it while it lasts. ------Don > > > = ---------- > > From: =         Jennifer Graham > = > Sent:         Thursday, = December 04, 1997 9:08 AM > > Subject: =      Re: crawling > > > > =  A quick question about milestones crawling in particular....did = ya'll > > kids > > have trouble picking their head up = and/or crawling?? Jordan can hold > > his head > > = upright when sitting, but not when on his tummy..I didn't know if = the > > fused > > hands play a role in not enabling = them to do this..since they can't > > put palms > > on = the floor..at least Jordan can't b/c all 5 of his fingers are > = > fused..he > > was 4 weeks early so the pediatrician said = that it may be a few more > > weeks > > yet b/c of his = adjusted birthdate..but he does so much ahead of where > > = he > > should be in other aspects ( ie... can find his hands to = munch at > > will, bats > > at objects on jungle gym, = talks A LOT...) so I was curious about > > ya'lls > > = experience...I'm calling the developmental people today..they = have > > worked w/ > > several Aperts kids, so maybe = they have a general idea..I'm not > > worried I'd > > = just like him to do it, I feel like hes flunking a test when I have = to > > tell > > the Dr. "no, that hes doesn't = do...but listen to what he does do.." > > Ya know > = > how it is.. > > > > Thanx in advance for ya'lls = imput > > > > Jenn (St. Pete, FL..monsoon = country) > > </body></html> ------=_NextPart_000_01BD00A7.A07B1040-- ========================================================================= Date: Thu, 4 Dec 1997 12:39:08 -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: Jennifer Graham <Jenngram@AOL.COM> Subject: Re: crawling

Gee George..those words have been spoken to me by my mom from, ohhh about birth..and shes always been right....her words of wisdom on this subject mimic yours and Dons exactly!! HA!!!

Jenn ========================================================================= Date: Thu, 4 Dec 1997 10:54:47 -0800 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Penny Halverson <phalvers@U.WASHINGTON.EDU> Subject: ApertCrouzon's Online Chat! (fwd) MIME-Version: 1.0 Content-Type: TEXT/PLAIN; charset=US-ASCII

Hi everyone!!!

I now have the online chat's channel called #ApertCrouzon on ChatNet. This is an online chat for families of children and adults with Apert's and/or Crouzon's including of those with other craniofacial anomalies to share the discussion on any topics that is going on with their lives. Everyone is welcome!

Please go to download from one of these below websites then install it. After that go to setup and follow the direction and be sure to have the Port setting and also add by typing the Channel name called exactly like this: #ApertCrouzon. Please read below:

Date To Meet On: Friday, December 5, 1997

IRC Server: ChatNet (Any locations)

Port Setting: 6667

Channel: #ApertCrouzon

Time: 8:00 PM ET/7:00 PM CT/6:00 PM MT/5:00 PM PT/3:00 PM HT

To check out the mIRC Help Page for Windows 3.x and Windows 95 users at: http://people.delphi.com/kbranstetter/mirc1.html You can download mIRC 5.11 there.

For MAC Users: Please download IRCle at: http://www.amug.org/~ircle/

If anyone needs help or have questions on accessing the chat on ChatNet. please email to Kristi at either:

mailto:kristib@qni.com or mailto:kbranstetter@delphi.com

Thanks and please join the fun!!!!

Hugs, Penny

http//www.earthlink.net/~hwy2heaven/

mailto:hwy2heaven@earthlink.net mailto:phalvers@u.washington.edu ========================================================================= Date: Thu, 4 Dec 1997 10:59:13 -0800 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Penny Halverson <phalvers@U.WASHINGTON.EDU> Subject: CORRECTED:ApertCrouzon's Online Chat! (fwd) Comments: To: Crouzon Syndrome Support Group & Other Craniofacial Anomalies <crouzon@u.washington.edu> MIME-Version: 1.0 Content-Type: TEXT/PLAIN; charset=US-ASCII

Hi everyone!!!

Date To Meet On: Friday, December 5, 1997

IRC Server: ChatNet (Any locations)

Port Setting: 6667

Channel: #ApertCrouzon

Time: 10:00 PM ET/9:00 PM CT/8:00 PM MT/7:00 PM PT/5:00 PM HT

To check out the mIRC Help Page for Windows 3.x and Windows 95 users at: http://people.delphi.com/kbranstetter/mirc1.html You can download mIRC 5.11 there.

For MAC Users: Please download IRCle at: http://www.amug.org/~ircle/

If anyone needs help or have questions on accessing the chat on ChatNet. please email to Kristi at either:

mailto:kristib@qni.com or mailto:kbranstetter@delphi.com

Thanks and please join the fun!!!!

Hugs, Penny

http//www.earthlink.net/~hwy2heaven/

mailto:hwy2heaven@earthlink.net mailto:phalvers@u.washington.edu ========================================================================= Date: Thu, 4 Dec 1997 14:45:21 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: ETolson643 <ETolson643@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Re: crawling Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Jenn Tim (16 yrs old) never really crawled. Before he walked he used to scoot around on his butt to get places. From this position he pulled himself up to stand and eventually to walk. I think that the combination of the fused fingers, large head, and low tone in the neck and shoulder area contribute to the difficulty with crawling...just a Mom's opinion. Also, during the time when he would have crawled, he was in a full arm cast most of the time since this is when a great deal of his hand surgery was done. Beth Tolson Boston ========================================================================= Date: Thu, 4 Dec 1997 12:11:56 -0800 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Penny Halverson <phalvers@U.WASHINGTON.EDU> Subject: CORRECTED:ApertCrouzon's Online Chat! MIME-Version: 1.0 Content-Type: TEXT/PLAIN; charset=US-ASCII

I am resending this because the earlier message I sent to the list did not thru as a reciept to let me know that it went to the list. Thanks Hugs, Penny

Hi everyone!!!

Date To Meet On: Friday, December 5, 1997

IRC Server: ChatNet (Any locations)

Port Setting: 6667

Channel: #ApertCrouzon

Time: 10:00 PM ET/9:00 PM CT/8:00 PM MT/7:00 PM PT/5:00 PM HT

To check out the mIRC Help Page for Windows 3.x and Windows 95 users at: http://people.delphi.com/kbranstetter/mirc1.html You can download mIRC 5.11 there.

For MAC Users: Please download IRCle at: http://www.amug.org/~ircle/

If anyone needs help or have questions on accessing the chat on ChatNet. please email to Kristi at either:

mailto:kristib@qni.com or mailto:kbranstetter@delphi.com

Thanks and please join the fun!!!!

Hugs, Penny

http//www.earthlink.net/~hwy2heaven/

mailto:hwy2heaven@earthlink.net mailto:phalvers@u.washington.edu ========================================================================= Date: Thu, 4 Dec 1997 15:29:42 -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: Don Sears <dsears@SCRS.STATE.SC.US> Subject: Re: crawling MIME-Version: 1.0 Content-Type: text/plain

Teeter did this really weird thing - she would lay on her back, then tilt her head back until the top of her head was on the floor (as if she were standing on her head and laying on her back at the same time) then push, propelling herself towards her feet a few inches. She moved all around the house like this, and it drove us crazy. I think she crawled normally for about a week before she walked. > ---------- > From: ETolson643 > Sent: Thursday, December 04, 1997 2:45 PM > To: APERT@LISTSERV.AOL.COM > Subject: Re: crawling > > Jenn > Tim (16 yrs old) never really crawled. Before he walked he used to > scoot > around on his butt to get places. From this position he pulled > himself up to > stand and eventually to walk. I think that the combination of the > fused > fingers, large head, and low tone in the neck and shoulder area > contribute to > the difficulty with crawling...just a Mom's opinion. Also, during the > time > when he would have crawled, he was in a full arm cast most of the time > since > this is when a great deal of his hand surgery was done. > Beth Tolson > Boston > ========================================================================= Date: Thu, 4 Dec 1997 13:48:08 -0800 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Penny Halverson <phalvers@U.WASHINGTON.EDU> Subject: Off-Topic: Martha Stewart's Humor (fwd) MIME-Version: 1.0 Content-Type: TEXT/PLAIN; charset=US-ASCII

Hi everyone! Here is another humor to make your day better. Cheer! Hugs, Penny

---------- Forwarded message ---------- Hi Penny, I rarely forward email humor, but I thought this one was pretty funny. Enjoy!! Margaret

>> MARTHA STEWART'S HUMOR FOR DECEMBER - JANUARY CALENDAR >> >> 12/1 - Blanch carcass from Thanksgiving Turkey. Spray-paint gold, >> turn upside down and use as a sleigh to hold Christmas cards. >> 12/2 - Have Mormon Tabernacle Choir record outgoing Christmas >> message for answering machine. >> 12/3 - Using candlewick and hand-gilded miniature pine cones, >> fashion cat-o-nine-tails. Flog gardener. >> 12/4 - Address sympathy cards for all friends with elderly >> relatives, so that they're all ready to be mailed the moment >> death occurs. >> 12/5 - Get new eyeglasses. Grind lenses myself. >> 12/6 - Fax family Christmas letter to Pulitzer committee for >> consideration. >> 12/7 - Debug Windows 95. >> 12/10 - Finish needlepoint colostomy bag cozy. >> 12/11 - Buy some cockroaches from the less fortunate; decorate >> eggs. >> 12/13 - Visit crematorium. Collect dentures. They make excellent >> pastry cutters, particularly for decorative pie crusts. >> 12/14 - Install plumbing in gingerbread house. >> 12/15 - Replace air in mini van tires with Glade "Holiday Scents" >> in case tires are shot out at the mall. >> 12/17 - Childproof the Christmas tree with garlands of razor wire. >> 12/19 - Adjust legs of chairs so each Christmas dinner guest will be >> the same height when sitting at his or her assigned seat. >> 12/20 - Dip sheep and cows in egg white and roll in confectioner's >> sugar to add a festive sparkle to the pasture. >> 12/21 - Outfit neighborhood rats with tiny antlers. >> 12/22 - Float votive candles in toilet tank. >> 12/23 - Seed clouds for white Christmas. >> 12/24 - Do annual good deed: Go to several stores. Be seen engaged >> in last-minute Christmas shopping making many people feel less >> inadequate than they really are. >> 12/25 - Bear son. Swaddle. Lay in color-coordinated manger >> scented with homemade potpourri. >> 12/26 - Write and mail Christmas thank-yous. Order cards for next >> Christmas. Estimate number of cards needed by allowing for >> making new friends and actuarially appropriate death rates for >> current friends and relatives. >> 12/27 - Build snowman in exact likeness of God. >> 12/29 - Enter Style Invitational. Win. >> 12/31 - New Year's Eve! Give staff their resolutions. Call a >> friend in each time zone of the world as the clock strikes >> midnight in that country. >> >> 1/1 - Catch up on gardening. Sew leaves back onto trees. Do all >> cooking for 1998. >> 1/3 - Repaint Sistine Chapel ceiling in ecru with mocha trim. >> 1/5 - Drain city reservoir. Refill with mulled cider, orange slices >> and cinnamon. >> 1/7 - Lay Faberge egg. >> 1/8 - Freshen air in home by sliding ten Dr. Scholl's shoe inserts >> into heat pump. >> 1/10 - Make steel wool from mussel beards saved over the years. >> 1/13 - Spin silk cord to garrote squid. Fill fountain pen with the >> ink and hand-write staff their dismissal notes. >> 1/15 - MLK birthday. Find out who MLK is. >> 1/16 - Take dog apart. Disinfect. Reassemble. >> 1/20 - Organize spice racks by genus and phylum. >> 1/21 - Culture ancient DNA into dinosaurs for nieces and nephews. >> 1/23 - Align carpets to adjust for curvature of Earth. >> 1/25 - Receive delivery of new phone books. Old ones make ideal >> personal address books by crossing out the names and addresses >> of people you do not know. >> 1/26 - Review the Christmas '95 show and try to understand why >> Julia Child is much beloved even though her croquembouche >> was very much askew. >> 1/28 - Attend workshop on obsessive-compulsive disorder. Take >> verbatim notes. >> 1/31 - Gild lilies. >> > ========================================================================= Date: Thu, 4 Dec 1997 14:40:13 -0800 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Penny Halverson <phalvers@U.WASHINGTON.EDU> Subject: Re: ApertCrouzon's Online Chat! (fwd) MIME-Version: 1.0 Content-Type: TEXT/PLAIN; charset=US-ASCII

Hi Kristi!

You got that right my friend!!!! I have a ball in chatting with you and the other people from widesmiles!! I love it!!!

Hopefully the people here and the Apert's list can join us for the big Friday nite chat!!!!! I will be sending a reminder tomorrow!!!

Hugs, Penny

http://www.earthlink.net/~hwy2heaven/

mailto:hwy2heaven@earthlink.net mailto:phalvers@u.washington.edu

On Thu, 4 Dec 1997, K. Branstetter wrote:

> Hi Penny, > I am laughing as I read this cuz it looks like what I post for CT. LOL > > I can't wait to chat with people here!!! I've already had the pleasure of > chatting with Gisela and Penny online and they are WONDERFUL to chat > with!!!!!!! > > Oh yeah I live in the #widesmiles channel on ChatNet. <G> > > > Hugs, > Kristi > "Each of us is different.. expect it, respect it, and accept it." Unknown > > Kristi's Place at http://people.delphi.com/kbranstetter/ > Arhinia at http://www.qni.com/~kristib/ > mailto:kristib@qni.com or mailto:kbranstetter@delphi.com > ========================================================================= Date: Thu, 4 Dec 1997 18:56:31 -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: (no subject) MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

To Kathy Sahlhoff,

Not sure if you received my reply to your message about a month ago. We had already moved after I received your message, or else we would have stopped or called. Sorry we missed you. ========================================================================= Date: Fri, 5 Dec 1997 14:27:59 +1300 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial 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: Crawling Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

Kia Ora Jenn

This was going to be a short response but you have touched on one of my hobbie horses - therapists wanting our children to follow "normal" patterns. Read on if you have time!

>Jordan can hold his head upright when sitting, but not when on his tummy..I >didn't know if the fused hands play a role in not enabling them to do >this..since they can't put palms on the floor..at least Jordan can't b/c all 5 >of his fingers are fused..

It sounds like Jordan is doing just what Amy was doing at that time apart from her not being an early arrival (she was in no hurry to face the world and had to be cut out) and she had rosebud hands as well. She was a bottom shuffler and was just starting to stand up at the furniture when she was given a foot operation for her first birthday, so down she went again. And here is the good news - YOU CAN'T CRAWL WHEN YOUR LEGS ARE IN PLASTER!!! BUT YOU SURE CAN BOTTOM-SHUFFLE!! You can also see what is going on and no-one has to find you something to sit on because you have got these really comfortable nappies padding your bottom.

>I'm calling the developmental people today..they have worked w/ several Aperts >kids, so maybe they have a general idea..

Be warned, the developmental people like children to crawl. I can understand that because it saves Mums and Dads having to put their children through Brain Gym later on to compensate, and it also saves bashed heads when children try to get under the table while they are walking because they have never learned to crawl under them! However, the reality is that if your child doesn't want to crawl and you are under pressure from surgeries or whatever is your stress-place at the time, it is a lot easier to sit back with a cuppa and watch them happily bottom-shuffle around the house, instead of using your time-out to force them into crawling positions and being deafened by their screams. I'm sure Amy didn't yell at the therapists as much as she yelled at me!

>I'm not worried I'd just like him to do it, I feel like hes flunking a test >when I have to tell the Dr. "no, that hes doesn't do...but listen to what he >does do.." Ya know how it is..

Well, I know how it was for me and Amy and I know I got awful stressed when the therapists were telling me all the things she should be doing at certain stages - which she wasn't of course. Those first few years are tough enough as it is because No.1 you are dealing with the issues around having a child who doesn't look quite as you expected, No.2 it takes a long time for those pregnancy hormones to leave you and let you feel "normal" again, No.3 you may be breastfeeding and that can be tiring, though the cuddles are wonderful, No.4 you probably aren't getting enough sleep, No.5 you have probably read the same papers we had that said the majority of children with Apert S were intellectually impaired and are worrying that your child may also be, No.6 you have been constantly going backwards and forwards to all these experts who leave you feeling totally inadequate as a mother/father, let along as the mother/father of a child who needs extra input - and haven't you learnt the meaning of all those big medical words yet? And don't you understand all the psychological teachings about development of children? Boy are you dumb! No.7 you have been in and out of hospital for months and have forgotten what the real world looks like, etc, etc. And here is this beautiful, perfect therapist who has probably produced a large family of college graduates telling you your child is developmentally delayed. Actually when I was told that I came up fighting. Of course she is developmentally delayed. This wee lass has had a lot to contend with and she will catch up when she is good and ready. And Jordan will do what he is capable of doing when he is capable of doing it. Our kids don't have regular shoulders - and maybe elbows and wrists and hips and knees and ankles and feet as well - so it just may be that crawling is not the thing for them to do. Maybe, in fact, it is totally the WRONG thing for them to do. We CAN compensate through the use of Brain Gym - and it is good for us to do it with them to make a game of it.

And I agree with Beth Tolson when she says: >Jenn >Tim (16 yrs old) never really crawled. Before he walked he used to scoot >around on his butt to get places. From this position he pulled himself up to >stand and eventually to walk. I think that the combination of the fused >fingers, large head, and low tone in the neck and shoulder area contribute to >the difficulty with crawling...just a Mom's opinion. Also, during the time >when he would have crawled, he was in a full arm cast most of the time since >this is when a great deal of his hand surgery was done. >Beth Tolson >Boston

And Don Sears talks about Teeter doing the same thing one of the children in our NZ Network did:

>Teeter did this really weird thing - she would lay on her back, then >tilt her head back until the top of her head was on the floor (as if she >were standing on her head and laying on her back at the same time) then >push, propelling herself towards her feet a few inches. She moved all >around the house like this, and it drove us crazy. I think she crawled >normally for about a week before she walked.

I do get a bit fed up with therapists who have all the theory about normal development and then try and fit our kids into that pattern. Children who follow the "Normal" development pattern don't spend half the first five years of their life in and out of hospital with one or more of their head, hands or feet in plaster or bandages, and they don't have shoulders that have a limited range of movement. I agree with the importance of crawling, but if the children cannot do it then we find some other way of stimulating the brain to create those pathways. I find it very hard to believe if your child is screaming to let you know s/he doesn't like what you are doing, that whatever you are doing is good for their development. If Amy's corpus collosum is missing (and the specialists are still rather vague about that) then it is important that she does do cross-crawling, but she doesn't actually have to physically crawl to get the same effect. Brain Gym with a 6 year old is fun.

Okay, I'll stop now.

Except to say that Amy is functioning at above-average level academically, can talk non-stop when she wants to, and though she isn't exactly athletic she does give everything a fair go - and she is loving and cuddly and happy.

I'm really stopping this time!

Cheers, Ann ========================================================================= Date: Fri, 5 Dec 1997 14:28:03 +1300 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial 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: Research on Teasing Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

Kia Ora

The research I chose to do for the Diploma in Children's Literature paper this year was on "Children's perceptions of character based on illustration" (I wonder why I chose that subject?) and during my searches I discovered the following paper (don't you just love the title?):

"The teasing syndrome in facially deformed children" by Jeffrey M. Gerrard, Child Psychiatric consultant to Australian Cranio-Facial Unit, Senior Visiting Child Psychiatrist, Adelaide Children's Hospital published in the Australian and New Zealand Journal of Family Therapy, 1991 Sep Vol 12 No.3 pp.147-154

Abstract: Teasing is a common occurrence in children and teenagers attending the Australian Cranio-Facial Clinic (maybe as high as 40%). A pilot project was developed to obtain more information about teasing and its effect on children attending the Cranio-Facial Clinic. From this work an hypothesis was developed about the dynamics of teasing at school and the consequences for the children in the form of sequential symptom development, which can evolve into a teasing syndrome. The syndrome begins with the child being upset, angry and miserable and evolves through social withdrawal, emergence of various psychosomatic symptoms and then proceeds to school failure and eventually to school refusal. At this point the child presents a clinical pcture of being depressed and maybe suicidal. An innovative treatment method was used to teach the children to make an imaginary forcefield which they could use to beat teasing and this was evaluated using a single case design method. Further studies need to be done to ascertain the epidemiology of teasing in normal and handicapped children in schools and to further elucidate aspects of "The Teasing Syndrome".

This is an intresting paper which I would have liked to summarise for you but I think it is worth getting yourself a copy if you have an interest in this area, because I think it needs to be read as a whole rather than snippets. For those who don't like the forcefield metaphor an alternative metaphor of a bubble has been successfully substituted.

I wonder if anyone has done any research on the impact on parents of the use of the term "Facially Deformed" when talking about our children??!!

I reckon the faces of our kids have a heck of a lot more character than some others I see around!! Maybe we need to start re-educating the psychologists and psychiatrists about the importance of terminology.

Cheers, Ann NZ ========================================================================= Date: Thu, 4 Dec 1997 20:43:54 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: MHTeach102 <MHTeach102@AOL.COM> Organization: AOL (http://www.aol.com) Subject: An Update Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Hey Everyone, Sorry for the long time between updates. I wanted everyone to know some great news. The doctors said we can take BJ home on Saturday. The doctors feel that he is as good as he can get for a while. He has been in the hospital for 132 days. He is stable and showing signs of a slow recovery. He is off the v ntalator for the most part. He still is not too responsive but hopefully that will improve. He has gained some weight back and that is improving. He is tolerating his G-Tube. He is on some strong antibiotics (Tobrmyacin sp? and Vancamycin Sp?) He has both a central line and a PIC line to help with all the meds. I am under the impression they will take the central line out before we go home. He is doing well on just O2 by mask. And his Innercranial pressure is stable.

The doctors and nurses are doing everything they can to help us get ready. They have helped us get the equipment and all the meds and supplies we will need. They have also helped us secure some formula from a company at cost. I am not sure of what else we need to do but am certain we are forgetting some things. I am not sure that David and I are ready for this. There is so much that BJ will need to have done and alot of it is new and a litttle scary.

David and I have worked the logistics out as much as possible. I will take care of BJ during the day while David is at work, then David will take the evening shift while I try to get my work done. We have arranged for a nurse to come out once a day to make sure everything is okay. We are also going to have one for 2 nights a week so we can both get some decent sleep. If anyone else has any ideas let me know.

Off to the store to buy our groceries for the next month.

Marjorie Harmon ========================================================================= Date: Thu, 4 Dec 1997 21:24:14 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: LUVS2WRTE <LUVS2WRTE@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Re: Research on Teasing Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Ann

Where can I get a hold of the article? This is exactly the kind of research I'd like to do when I became an experimental psychologist. (hopefully by the time Im 80!) I'd love to study how children and adults with Apert, as well as any other handicapps both physical and mental, are treated in society, and cope, or the psychological difficulties they face, how society treats them, etc. I think what your doing is a great idea! Good luck on your project!

-Andrea ========================================================================= Date: Thu, 4 Dec 1997 18:06:27 -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: Joanne Lindamood <chanan8@JUNO.COM>

Hello!

Jenn, I didn't crawl either, I scooted on my rear, and now, 31 years later, " fly by the seat of my pants"! I believe it was because I had my hands bandaged when I should have been crawling "the normal way". I had several surgeries to seperate my thumbs. My scooting speed was as fast as my brothers, had to keep up with them, or suffer their tormenting once they caught me!

Ann, Hearing loss was the "norm" for me, so when I heard the car heater for the first time after the tubes, my mom didn't know what "noise" I was referring to. I heard the hum, that was normal for her, and could not figure out what it was.

Good news! My "family" is growing! I will be bringing home a new bird tomorrow! Coal, a nanday conure, hopped on my shoulder a couple of weeks ago when I was at a bird show, and we fell in love with each other. I hope Clarence, my first "son" (cockatiel) won't mind the new brother! Like Clarence, who is named after the angel in the movie "It's A Wonderful Life", Coal is named after a movie character.. In the movie "Mr. Holland's Opus", Mr. Holland's deaf son is named Cole. I appreciated the relationship between father and son, therefore picking that name. I changed the spelling. I'm getting Coal for Christmas! Get it???? Wish me luck!

Joanne, here in cold, but no snow yet, Ohio! ========================================================================= Date: Thu, 4 Dec 1997 21:27:05 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: LUVS2WRTE <LUVS2WRTE@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Re: An Update Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Marjorie & David,

I am so happy to hear that BJ is doing better and that he's going home! YAHHHHHHHH!!!

Best Wishes, Andrea ========================================================================= Date: Thu, 4 Dec 1997 22:07:06 -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: Mark Smith <dsprado@PENN.COM> Subject: re-crawling MIME-Version: 1.0 Content-Type: multipart/alternative; boundary="----=_NextPart_000_0042_01BD0100.F5C68DA0"

This is a multi-part message in MIME format.

------=_NextPart_000_0042_01BD0100.F5C68DA0 Content-Type: text/plain; charset="iso-8859-1" Content-Transfer-Encoding: quoted-printable

Dear Jenn,

Kayla crawled but not on her hands, because of the webbing so she = crawled on her elbows. It was different but It worked. She was = delayed....it seemed like it took her forever to learn.... I think it = the problem had to do a lot with her head being so heavy....plus just = having surgery at 5mos old.... Anyhow good luck.

Michele

------=_NextPart_000_0042_01BD0100.F5C68DA0 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 4.71.1712.3"' name=3DGENERATOR> </HEAD> <BODY bgColor=3D#ffffff> <DIV>Dear Jenn,</DIV> <DIV> </DIV> <DIV>Kayla crawled but not on her hands, = <FONT=20 color=3D#000000>because of the webbing so she crawled on her = elbows. =20 It was different but It worked. She was delayed....it seemed like it = took her=20 forever to learn.... I think it the problem had to do a lot with her = head being=20 so heavy....plus just having surgery at 5mos old.... Anyhow good=20 luck.</DIV> <DIV> </DIV> <DIV>Michele</DIV> <DIV> </DIV></BODY></HTML>

------=_NextPart_000_0042_01BD0100.F5C68DA0-- ========================================================================= Date: Thu, 4 Dec 1997 20:37:17 -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: Scott Pengelly <ScottP@LLX.COM> Subject: Re: An Update Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

Dear BJ, David and Marjorie:

What great news. Congratulations and best wishes to you all. Good luck with the next steps. It must feel so good to be home together again.

All the best,

Scott

-------------------------------------------------------------------------------- Scott Pengelly, Ph.D. * Head Coach * scottP@LLX.COM 1374 Willamette Street, Suite 6; Eugene, Oregon 97401-4075, U.S.A. voice: (541) 343-3218 * fax: (541) 343-2218 ========================================================================= Date: Thu, 4 Dec 1997 23:41:41 -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: Christopher Kilner <ckilner@OSF1.GMU.EDU> Subject: Re: An Update In-Reply-To: <31b94b9e.34875e22@aol.com> Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

Dear Harmons,

We're thrilled to hear you'll be bringing BJ home! We can't wait to tell our three-year-old Ceci who has been praying "and for BJ come home" since August. When we wrote our letter to Santa Claus last weekend, Ceci asked for a "new kitchen, a D.W. doll, and BJ come home." My wife and I both cried, but it looks like Santa is gonna come through. Congratulations and best wishes for the holidays!

Chris & Reggie (and Ceci and Blair) Kilner, Alexandria, VA ========================================================================= Date: Fri, 5 Dec 1997 01:39:21 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: Camous <Camous@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Re: crawling Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Actually, my 4 year old was a "scooter" like Tim. Had one leg tucked out and one under- couldn't get the dirt out of her clothes over one "cheek" and had callouses on the outside of that leg. And boy, could she move fast!!! Finally crawled after she walked - just 'cuz she thought it was funny to do it! Evan couldn't put his hands flat until just recently (15-16 months) His first OT worked on getting him to get up on his elbows. His shoulders have so much range of motion that he had to get up to roll over . Then he began rolling to get around, followed by scooting on his back (toward his head) he's recently been doing the "commando crawl" and seems to still have trouble getting his torso off the ground. The last OT we had in Pittsburgh had us trying "knee skis" to help him get used to getting up on his knees. He seemed to have trouble getting his body and head off the ground at the same time! He's almost there now!! And beginning to pull up on furniture- will be walking soon! Watch out!! Of all the things that have been challenging to him, I haven't been to sorry to see him be a late walker....when he does walk he'll be into more than the other two put together!!!

By the way, George, that's my been my dad's favorite saying from yime immemorial!! I used to work with RN who was also a wiccan priestess- her fix is that when you "ask" or "pray" for anything you just have to be really specific ....you might get what you technically ask for, but now in the way you expect it!!

Marianne....in rainy California (I guess this is the start of El Nino- what folks here don't realize is that everytime we move somewhere, we seem to have the worst winters, hotest summers, etc that the natives have seen in years!! Maybe we are El Nino!! ;) ========================================================================= Date: Fri, 5 Dec 1997 01:50:22 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: Camous <Camous@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Re: Crawling Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Bravo Ann!! Well spoken!! (or rather written!) I'd like to see one of these often idiotic developmentalists do anything after a year spent having 7 major surgeries, 60 inpatient hospital days, a respiratory arrest, a shunt infection that they blew off for 6 weeks, RSV twice, etc, etc!! Evan has more guts and gumption than the rest of them, manipulates his caregivers like a pro, and always gets highest points for his social skills!!! Isn't that what counts in the big picture??

Marianne ========================================================================= Date: Fri, 5 Dec 1997 01:57:43 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Camous <Camous@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Re: An Update Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

In a message dated 97-12-04 20:57:50 EST, you write:

<< David and I have worked the logistics out as much as possible. I will take care of BJ during the day while David is at work, then David will take the evening shift while I try to get my work done. We have arranged for a nurse to come out once a day to make sure everything is okay. We are also going to have one for 2 nights a week so we can both get some decent sleep. If anyone else has any ideas let me know. >> Sounds like you are spreading things kind of thin!! What about family time with the other kids away from home (school things, games, etc???) or time to just sit and stare into space wondering how you got here or whatever.... Especially if you are dealing with the insurance co - ALWAYS ask for more than you think you need, because you will need it and you need to leave some "bargaining room". This has been an ongoing battle for us- finally reached a point of seeing eye to eye with our case manager after she had a colicky baby at home. Now with a move and 2 insurance companies involved...we are at it again. Plus, you look like a real champ if you don't use all your hours, but they are hard to get at the spur of the moment when you start falling asleep at the wheel at red lights (really happened to me!!).

Bravo for BJ!!! This has got to be the best Christmas present you could have at this point!! Good luck to you all! We'll keep you in our prayers.

Marianne ========================================================================= Date: Fri, 5 Dec 1997 06:36:27 +0000 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "J. G. Lindamood" <chanan8@JUNO.COM>

Hello Harmon Family!

How completely thrilled I was to read about BJ's progress! What a great Christmas! I will continue to pray for his progress and for strength for all of you!

Ann,

Way to go! You definitly have a way with words! Thanks for saying what everyone (especially the inexperienced) needed to hear!

Joanne in Ohio ========================================================================= Date: Fri, 5 Dec 1997 08:51:41 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jenngram <Jenngram@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Re: Research on Teasing Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Ann, Would be intersted in the paper..and I like the term forcefield..sorta like a Star Wars approach..and regarding the term "facially deformed"..its about as accurate as the term "birth defect"..its all very subjective..I personally feel those kids who go around shooting classmates..or mass murders who kill, abuse, eat..whatever ..their victims are the ones w/ "birth defects"!

Have a good one Jenn (St. Pete, Fl) ========================================================================= Date: Fri, 5 Dec 1997 09:27:08 -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: George Starr <daystar@IGLOU.COM> Subject: Re: Crawling MIME-Version: 1.0 Content-Type: multipart/alternative; boundary="----=_NextPart_000_01BD015F.F535B320" Content-Transfer-Encoding: 7bit

This is a multi-part message in MIME format.

------=_NextPart_000_01BD015F.F535B320 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit

> that they blew off for 6 weeks, RSV twice, etc, etc!! Evan has more guts and > gumption than the rest of them, manipulates his caregivers like a pro, and > always gets highest points for his social skills!!! Isn't that what counts in > the big picture??

This sound like my wife Rosemarie, she took some teasing growing up but now she is a real strong person with a wicked backhand!!! It's been a standing joke that she's knows 1/2 the state and is related to the other half. People I'd call friends are hard to come by for me, I've got a hand full that I call friends and she has 5 times than many. We go out and we almost always run into someone she knows that leaves me asking "Who was that?". If I had her social skills I'd probably go a lot farther in life. We have talked about her getting a different type of job (she's a bank teller) in the bank, but she likes taking care of customers and being around people and it's important to do what you like so she stays with it.

On a lighter note: I heard someone say they got a new bird on here, Great. But did I ever tell you what happen with me? Guess not, well here goes:

While I was at the pet shop, I found and bought a talking parrot. When I returned home the parrot broke out in a string of profanity. To teach him a lesson, I put him in the freezer. What a commotion! After he quieted down, I let him out. He was quiet now and after a few moments asked: "What did the chicken do?".

Okay I stole it, but I liked it!!

Later, George

p.s. Glad to see BJ is making some progress. ------=_NextPart_000_01BD015F.F535B320 Content-Type: text/html; charset=ISO-8859-1 Content-Transfer-Encoding: quoted-printable

<html><head></head><BODY bgcolor=3D"#FFFFFF">> that they blew off for 6 weeks, = RSV twice, etc, etc!! Evan has more guts and > gumption than the = rest of them, manipulates his caregivers like a pro, and > always = gets highest points for his social skills!!! Isn't that what counts = in > the big picture?? This sound like my wife Rosemarie, = she took some teasing growing up but now she is a real strong person = with a wicked backhand!!!  It's been a standing joke that she's = knows 1/2 the state and is related to the other half. People I'd call = friends are hard to come by for me, I've got a hand full that I call = friends and she has 5 times than many. We go out and we almost always = run into someone she knows that leaves me asking "Who was = that?". If I had her social skills I'd probably go a lot farther in = life. We have talked about her getting a different type of job (she's a = bank teller) in the bank, but she likes taking care of customers and =  being around people and it's important to do what you like so she = stays with it. On a lighter note: I heard someone say they = got a new bird on here, Great. But did I ever tell you what happen with = me? Guess not, well here goes: While I was at the pet shop, I = found and bought a talking parrot.  When I returned home the = parrot broke out in a string of profanity.  To teach him = a lesson, I put him in the freezer.  What a commotion! =  After he quieted down, I let him out.  He was quiet now = and after a few moments asked:  "What did the chicken = do?".      Okay I stole it, but I liked = it!! Later, George p.s. Glad to see BJ is making some = progress. </body></html> ------=_NextPart_000_01BD015F.F535B320-- ========================================================================= Date: Fri, 5 Dec 1997 08:59:18 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: Jenngram <Jenngram@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Re: An Update Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

So, glad to hear Bjis doing well and going to make it home. he will probablly thrive even more in his own familiar surroundings. Sounds like ya'll are in for a hectic and stressful time, but you've got it mapped out which willl help. My thoughts will continue to be w/ ya'll!

Jenn (St. Pete, Fl) ========================================================================= Date: Fri, 5 Dec 1997 11:49:59 -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: Laura Pulido <PulidoL@CSMC.EDU> Subject: Crawling - BAER Test - Tearing Comments: cc: LanierV@CSMC.EDU MIME-version: 1.0 Content-type: text/plain; charset=us-ascii Content-transfer-encoding: 7bit

Hello everyone!

Crawling: Martha never crawled. She used to roll around, then her Regional Center teacher taught her how to drag herself to where she wanted to go. I also think that it was due to her head size and her hands (and the sensitivity due to hand surgeries). She went from dragging her body straight to walking (@ 19 months). Now that she's 22 months, her teacher has taught her to crawl "normally". I thought it was odd that the teacher wanted her to learn to crawl since Martha's already walking. Her reasoning was: She should have an alternate way of moving around other than walking.

BAER (hearing) test: Martha was sedated both times. Once shortly after birth and the other at about 4-5 months. Janine - I agree, it is very difficult to keep a baby still for 45 mins. The sedative worked great for her. I wanted to ask for some to go, just kidding ;-)

Tearing: Martha is constantly tearing. I took her to an eye surgeon (because one of her eyes tends to wander when she looks to the side without turning her head) who said that Aperts kids usually have small tear ducts (?). So that the moisture in the eyes can't "drain" back to the ducts and instead "rolls" out like tears. She may need to have surgery for strabismus (crossed eyes) or perhaps just wear glasses.

Merry Christmas, Feliz Navidad, Happy Hanukkah, Happy Kwanza, ETC!!! ========================================================================= Date: Fri, 5 Dec 1997 14:09:27 -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: Penny Halverson <phalvers@U.WASHINGTON.EDU> Subject: ApertCrouzon's Chat Tonite 12/5 (fwd) MIME-Version: 1.0 Content-Type: TEXT/PLAIN; charset=US-ASCII

Hi everyone!!!

Tonite is ApertCrouzon Chat Tonite!! So in case you haven't had a chance to download the mIRC for Windows 3.x and 95 or IRCle for MAC users,

Date To Meet On: Friday, December 5, 1997

IRC Server: ChatNet (Any locations)

Port Setting: 6667

Channel: #ApertCrouzon

Time: 10:00 PM ET/9:00 PM CT/8:00 PM MT/7:00 PM PT/5:00 PM HT

To check out the mIRC Help Page for Windows 3.x and Windows 95 users at: http://people.delphi.com/kbranstetter/mirc1.html You can download mIRC 5.11 there.

For MAC Users: Please download IRCle at: http://www.amug.org/~ircle/

If anyone needs help or have questions on accessing the chat on ChatNet. please email to Kristi at either:

mailto:kristib@qni.com or mailto:kbranstetter@delphi.com

Everyone is welcome!!!

Thanks and please join the fun!!!!

Hugs, Penny

http//www.earthlink.net/~hwy2heaven/

mailto:hwy2heaven@earthlink.net mailto:phalvers@u.washington.edu ========================================================================= Date: Fri, 5 Dec 1997 18:07:09 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Yonstein <Yonstein@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Re: crawling Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Hi everyone:

It's very interesting to read all of this info about crawling since Emily is only 4 months. That's been a concern of mine also, especially since she doesn't do well on her stomach. I guess that is because of the shoulders. She also lifts her head but not to the 90 degree angle that she is supposed to when on her belly.

The physical therapist is helping to try to work on it to strenghthen her shoulders and arms. I will say that it is very reassuring to hear how all of the children are developmentally ok. That's been one of my questions all along and it truly a wait and see thing, even though there is no indication otherwise. You are right, though, that is what all of the literature and articles say, that there would or could be some problems.

Emily got the results of the BAER test back and it was inconclusive because of the moving around, but the tympanogram showed fluid in her ear so now I have an appt. with the ENT and maybe she will need her first set of ear tubes in already. Well, that will be 2 surgeries already. Now I know what all you guys are talking about about the first year being so hard. I am really having a tough time of it this week. I am starting to wonder if there is any part of our kids bodies that are not affected by this.

Anyway sorry for my going on and on.

Janine ========================================================================= Date: Fri, 5 Dec 1997 17:49:18 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: Yonstein <Yonstein@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Re: An Update Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Dear Marjorie:

All the best in bringing BJ home. I am sure you are excited and nervous at the same time. I wish I had some wonderful words of wisdom for you, but I'll just say my thoughts and prayers are with you and best wishes.

Janine ========================================================================= Date: Sat, 6 Dec 1997 01:15:24 +0100 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Yngve Wallenius <wallenius@MBOX303.SWIPNET.SE> Subject: Re: An Update MIME-Version: 1.0 Content-Type: text/plain; charset=iso-8859-1 Content-Transfer-Encoding: 8bit

MHTeach102 wrote: > > Hey Everyone, > Sorry for the long time between updates. I wanted everyone to know some > great news. The doctors said we can take BJ home on Saturday. The doctors feel > that he is as good as he can get for a while. He has been in the hospital for > 132 days. He is stable and showing signs of a slow recovery. He is off the v > ntalator for the most part. He still is not too responsive but hopefully that > will improve. He has gained some weight back and that is improving. He is > tolerating his G-Tube. He is on some strong antibiotics (Tobrmyacin sp? and > Vancamycin Sp?) He has both a central line and a PIC line to help with all the > meds. I am under the impression they will take the central line out before we > go home. He is doing well on just O2 by mask. And his Innercranial pressure is > stable. > > The doctors and nurses are doing everything they can to help us get > ready. They have helped us get the equipment and all the meds and supplies we > will need. They have also helped us secure some formula from a company at > cost. I am not sure of what else we need to do but am certain we are > forgetting some things. I am not sure that David and I are ready for this. > There is so much that BJ will need to have done and alot of it is new and a > litttle scary. > > David and I have worked the logistics out as much as possible. I will > take care of BJ during the day while David is at work, then David will take > the evening shift while I try to get my work done. We have arranged for a > nurse to come out once a day to make sure everything is okay. We are also > going to have one for 2 nights a week so we can both get some decent sleep. If > anyone else has any ideas let me know. > > Off to the store to buy our groceries for the next month. > > Marjorie Harmon

Hej Marjorie and David

Wonderfull to hear that BJ is coming home. What a christmas gift. Take care of him and your self.

Hej då

Yngve ========================================================================= Date: Fri, 5 Dec 1997 19:21:04 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: MHTeach102 <MHTeach102@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Re: An Update Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Janine, I'll be honest I am terified. There is so much that BJ will need and I wonder if we can do it. The doctors have wanted us to put him in a nursing home, but I just can't. I have been practicing all the procedures he will need and will just have to hope that we are doing the right thing. This is weird I am more worried now than te first time we brought him home as a baby.

Marjorie ========================================================================= Date: Fri, 5 Dec 1997 18:43:30 -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: Ize <ize@TACOMA.CEATLABS.OKSTATE.EDU> Subject: An Update MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

Dear Marjorie and David,

What a good update! We are very happy to know that BJ is coming home. What a Wonderful Christmas gift! We wish that everything continuos to improve for him. You will be always in our thoughts and prayers.

The Ize Family from Oklahoma. ========================================================================= Date: Fri, 5 Dec 1997 20:29:08 +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>

Cute George, Really cute.

From: Joanne - the proud mom of two birds! ========================================================================= Date: Sat, 6 Dec 1997 09:02:23 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Mark Smith <dsprado@PENN.COM> Subject: RE-update MIME-Version: 1.0 Content-Type: multipart/alternative; boundary="----=_NextPart_000_0052_01BD0225.AABE84E0"

This is a multi-part message in MIME format.

------=_NextPart_000_0052_01BD0225.AABE84E0 Content-Type: text/plain; charset="iso-8859-1" Content-Transfer-Encoding: quoted-printable

Dear Majorie and David,

Glad to hear that BJ had made such good progress, and will be coming = home. You'll be in our thoughts and prayers. Good luck with all the = new adjustments.=20

Michele and Mark

------=_NextPart_000_0052_01BD0225.AABE84E0 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 4.71.1712.3"' name=3DGENERATOR> </HEAD> <BODY bgColor=3D#ffffff> <DIV>Dear Majorie and David,</DIV> <DIV> </DIV> <DIV>Glad to hear that BJ had made such = good=20 progress, and will be coming home.  You'll be in our thoughts and=20 prayers.  Good luck with all the new adjustments. </DIV> <DIV> </DIV> <DIV>Michele and Mark</DIV> <DIV> </DIV></BODY></HTML>

------=_NextPart_000_0052_01BD0225.AABE84E0-- ========================================================================= Date: Sat, 6 Dec 1997 03:08:22 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: JSanc10676 <JSanc10676@AOL.COM> Organization: AOL (http://www.aol.com) Subject: B.J. Going home Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Dear Marjorie, David and Family, Congratulations on B.J. coming home! Im sure you will find his recovery improved once he is home and settled. Thank you for the updates and although I am not posting much myself these days, have eagerly awaited your posts in hopes of great news like this. Our son A.J. has had nursing care for the past five years. He has a trach and a G-tube. After the initial few weeks of constant nursing care we wanted to have our home back and do the care ourselves. We cut our way down and only had a few shifts of nursing care a week. For us, this proved to be very difficult. Family time was almost nil, even buying groceries became very difficult. His care needs were huge and because A.J. was so susceptable to infection we had to be very careful with going places and even with people coming over. Having nursing care gave us back some time to take care of other things. To make a long story longer, I totally agree with Marianne, if you have availability of nursing care, take advantage of it. Get a cell phone and or a pager so when you do leave, the care givers can reach you immediately. This made a huge difference in our lives. Best of luck to you and your family! I look forward to future updates once your home. Julie Sanchez P.S. After 5.5 years of a Trach, A.J. is seeing the ENT next week to schedule the removal!!!!!!!! He will also have his G-tube removed at the same time. He will have to be admitted for a sleep study first but I have no doubt he will pass with flying colors. He went off prednisone last May (after 4 years) and last month (after several months of slowly reducing time and pressure) we took him completely off the partial ventilator he had been on for the past 5 years. He is doing great and we are all very excited. ========================================================================= Date: Sat, 6 Dec 1997 15:13:08 -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: Update MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

Brenda,

Very simple. Any kind of hand lotion, applied as often as you can and massage the scar tissue to help break it down as it heals.

Glad the surgery went well.

Take care.

Christine

<George Siebert> wrote: > > Hi Gaylann, > > Hope all is going well for Sonya with the new baby. I have heard very good > things about Dr. Feuron from our surgeon here in Houston. As a matter of > fact, he suggested we see him for a second opinion if we felt unsure about > things here in Houston. Anyway, as you know we went to Chatanooga in Oct. to > see Dr. Sargent and basically decided we didn't want to do the total vault at > this time just to lower his forehead size. We also just went through our > first hand surgery and have just gotten the bandages off. What a chore that > was--keeping the bandages on Mr. Jonathan. Does anyone have any > recommendations for lotions to apply after the skin grafts have taken to help > with scarring? Take care and give my best to Sonya. > > Brenda Siebert ========================================================================= Date: Sat, 6 Dec 1997 17:32:51 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: Yonstein <Yonstein@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Re: B.J. Going home Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Dear Julie:

It's nice to hear that AJ is doing so well. He was one of the first children that I read about when I got on line. You truly did a wonderful thing with AJ.

Janine Krebs ========================================================================= Date: Sat, 6 Dec 1997 17:36:01 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Yonstein <Yonstein@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Re: An Update Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Marjorie:

I don't know how you couldn't be terrified. I know how I felt bringing Emily home after five days in PICU after her cranial surgery. BJ has been away from your home for so long it's going to really be an adjustment, not to mention the extra care that you will be taking on.

As for putting him in a nursing home, I personally wouldn't be able to do it either, at least not until I gave it a try at home first.

You hang in there and remember we are all thinking about you and your family.

Also, Ann, thank you for your kind words to me. I guess you just need to hear that it's ok to feel all these feelings once in a while, but we just keep on ticking, don't we?

Janine ========================================================================= Date: Fri, 5 Dec 1997 22:16:37 -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: Chad & Denise Graham <cgraham@INFOAVE.NET> Subject: FORMULA MIME-version: 1.0 Content-type: text/plain; charset="us-ascii"

I don't know if this will help, but I read an article written by a woman who fought her insurance to buy the formula for her daughter, and won. The article was in the NORD (Orphan Disease Update). If you would like to know more about this and would like to get in touch with these people, let me know. It did say that HIGHMARK Blue Cross/Blue Sheild as of June 1, 1997 pays for enteral formulas for its subscribers. I am glad B.J. is going home with you! Good luck, and you will be in our prayers.

Denise Graham ========================================================================= Date: Sat, 6 Dec 1997 15:55:08 -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: crawling MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

Don,

Ditto for Michelle, hah! We called it the "inchworm" She would also roll a lot. Sometimes she would hold on to the corner of the blanket on the floor and roll herself up. We called her the "Baby Burrito". I guess when kids have "Abbey-normal" parents they do strange things like this, right? Hah!!

All my best,

Christine

Don Sears wrote: > > Teeter did this really weird thing - she would lay on her back, then > tilt her head back until the top of her head was on the floor (as if she > were standing on her head and laying on her back at the same time) then > push, propelling herself towards her feet a few inches. She moved all > around the house like this, and it drove us crazy. I think she crawled > normally for about a week before she walked. > > ---------- > > From: ETolson643 > > Sent: Thursday, December 04, 1997 2:45 PM > > To: APERT@LISTSERV.AOL.COM > > Subject: Re: crawling > > > > Jenn > > Tim (16 yrs old) never really crawled. Before he walked he used to > > scoot > > around on his butt to get places. From this position he pulled > > himself up to > > stand and eventually to walk. I think that the combination of the > > fused > > fingers, large head, and low tone in the neck and shoulder area > > contribute to > > the difficulty with crawling...just a Mom's opinion. Also, during the > > time > > when he would have crawled, he was in a full arm cast most of the time > > since > > this is when a great deal of his hand surgery was done. > > Beth Tolson > > Boston > > ========================================================================= Date: Sat, 6 Dec 1997 19:35:59 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: MHTeach102 <MHTeach102@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Re: B.J. Going home Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Julie, I wanted to thank you for your note. I was so happy to hear that AJ is doing so much better. Like AJ, BJ has a partial ventalator too. I hope some day down the road BJ will be off his too.

BJ was suppose to be home around 9 AM this morning but we had to wait until this afternoon to get an available ambulance. The nurse and doctor spent about 3 hours getting him situated. Our insurance will only provide 25 hours a week of nursing care. That is only 4 shifts. We have contacted 2 United Way agencies and we can get 4 more shifts of respite care.

We already have the pager/cellular/ and even a fax machine. We also have contaceted our neighboorhood fire department and have set up a crises plan. We also got a portable generator in case the power goes off. I guess we are a little lucky since David is a firefighter, several of his co workers have volunteered to help watch him so we can get some sleep and other stuff done.

About the only thing we are still working out is the oher kids. We are trying to do as much as possible with the other kids. They are all a little anxious about this. Katie even seems very frieghtend of BJ.

BJ is doing well right now. The doctors have him on some morphine because of the pain of the move. So he is resting comfortably. We have full 24 hour nursing care for 5 days. So we are going to take advantage of this time to get out house and lives back together as well as work out some more details.

I do have a favor to ask. I need some real simple recepies of meals to fix. It seems that there won't be much time for cooking. Thanks again for all the help.

Marjorie Harmon ========================================================================= Date: Sat, 6 Dec 1997 19:57:21 -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: The Stroupes <stroupes@IX.NETCOM.COM> Subject: Re: An Update MIME-Version: 1.0 Content-Type: text/plain; charset="iso-8859-1" Content-Transfer-Encoding: 7bit

Marjorie,

So glad to hear that BJ is finally coming home. You guys have been through an awful lot and we pray things will improve from here on.

Regarding nursing care, I must agree with the others. Do take advantage of any that is available. Zach came home from the hospital at two months old on oxygen and we had a nurse for the first four weeks. The hospital wanted us to have the nurse at night so we could get some rest. However, we did not think we could sleep with a stranger in our house so we took the services during the day. That proved to be a big mistake. Judy and I were exhausted in short order. At work, I had to have my staff drive me to meetings so I would not go to sleep at the wheel, which I almost did several times on the way to work (only 18 miles and a half hour ride). We were literally "fried" when Zach re-entered the hospital with pneumonia at the end of the second month home. When the doctor instructed us not to visit for 36 hours, we actually complied (the first time Judy had failed to see Zach since he was born).

I would recommend that you see how things go with as much nursing as you can get or afford and cut back from there. It is much easier to do that way than to try to add hours later.

Good luck and we are so glad to hear BJ will be home for Christmas.

Dan -----Original Message----- From: MHTeach102 <MHTeach102@AOL.COM> To: APERT@LISTSERV.AOL.COM <APERT@LISTSERV.AOL.COM> Date: Thursday, December 04, 1997 9:43 PM Subject: An Update

>Hey Everyone, > Sorry for the long time between updates. I wanted everyone to know some >great news. The doctors said we can take BJ home on Saturday. The doctors feel >that he is as good as he can get for a while. He has been in the hospital for >132 days. He is stable and showing signs of a slow recovery. He is off the v >ntalator for the most part. He still is not too responsive but hopefully that >will improve. He has gained some weight back and that is improving. He is >tolerating his G-Tube. He is on some strong antibiotics (Tobrmyacin sp? and >Vancamycin Sp?) He has both a central line and a PIC line to help with all the >meds. I am under the impression they will take the central line out before we >go home. He is doing well on just O2 by mask. And his Innercranial pressure is >stable. > > The doctors and nurses are doing everything they can to help us get >ready. They have helped us get the equipment and all the meds and supplies we >will need. They have also helped us secure some formula from a company at >cost. I am not sure of what else we need to do but am certain we are >forgetting some things. I am not sure that David and I are ready for this. >There is so much that BJ will need to have done and alot of it is new and a >litttle scary. > > David and I have worked the logistics out as much as possible. I will >take care of BJ during the day while David is at work, then David will take >the evening shift while I try to get my work done. We have arranged for a >nurse to come out once a day to make sure everything is okay. We are also >going to have one for 2 nights a week so we can both get some decent sleep. If >anyone else has any ideas let me know. > >Off to the store to buy our groceries for the next month. > >Marjorie Harmon > ========================================================================= Date: Sat, 6 Dec 1997 19:24:03 +1300 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial 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: Research on Teasing Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

Hi Andrea

I found this through searching the PsycLit section of a university-type library. Do you have access to such a library or have a friendly medical person or psychologist or psychiatrist who could access it for you? If not, send us your address and we will send you a copy snail mail.

Regards, Ann NZ ========================================================================= Date: Sat, 6 Dec 1997 19:24:07 +1300 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial 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: An Update Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

Great news Marjorie! All the best for the big move.

Aroha, Ann and Howard and Amy NZ ========================================================================= Date: Sat, 6 Dec 1997 19:33:16 +1300 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial 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: Crawling Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

Hi again

That sounds an odd reason for getting Martha to crawl. Amy's therapists wanted her to crawl because in the action of crawling they are using opposite sides of the body together, which helps develop the message pathways between the two sides of the brain, assisting brain development and coordination etc.

And you'll be pleased to know that's all I am going to say this time!

Cheers, Ann NZ

>Crawling: Martha never crawled. She used to roll around, then her >Regional Center teacher taught her how to drag herself to where she >wanted to go. I also think that it was due to her head size and her >hands (and the sensitivity due to hand surgeries). She went from >dragging her body straight to walking (@ 19 months). Now that she's 22 >months, her teacher has taught her to crawl "normally". I thought it >was odd that the teacher wanted her to learn to crawl since Martha's >already walking. Her reasoning was: She should have an alternate way >of moving around other than walking. ========================================================================= Date: Sat, 6 Dec 1997 19:33:46 +1300 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial 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: Research on Teasing Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

Hi Jenn

Same message to you and and anyone else interested that I sent to Andrea. If you can't find the paper let us know your address and we will send a copy.

May the Force be with you.

At 08:51 AM 5/12/97 EST, you wrote: > Ann, >Would be intersted in the paper..and I like the term forcefield..sorta like a >Star Wars approach..and regarding the term "facially deformed"..its about as >accurate as the term "birth defect"..its all very subjective..I personally >feel those kids who go around shooting classmates..or mass murders who kill, >abuse, eat..whatever ..their victims are the ones w/ "birth defects"! > >Have a good one >Jenn (St. Pete, Fl) > > ========================================================================= Date: Sat, 6 Dec 1997 20:07:08 -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: The Stroupes <stroupes@IX.NETCOM.COM> Subject: Re: ApertCrouzon's Chat Tonite 12/5 (fwd) MIME-Version: 1.0 Content-Type: text/plain; charset="iso-8859-1" Content-Transfer-Encoding: 7bit

Penny,

So sorry I was so antisocial last evening. Judy went to bed earlier with a terrible cold and I was waking her with my noisey keyboarding. She gets real grumpy when she is sick, unlike me who gets whiney. Hopefully, we will get another chance to chat.

Dan Stroupe

-----Original Message----- From: Penny Halverson <phalvers@U.WASHINGTON.EDU> To: APERT@LISTSERV.AOL.COM <APERT@LISTSERV.AOL.COM> Date: Friday, December 05, 1997 5:11 PM Subject: ApertCrouzon's Chat Tonite 12/5 (fwd)

>Hi everyone!!! > >Tonite is ApertCrouzon Chat Tonite!! So in case you haven't had >a chance to download the mIRC for Windows 3.x and 95 or IRCle >for MAC users, > >Please go to download from one of these below websites then install >it. After that go to setup and follow the direction and be sure to >have the Port setting and also add by typing the Channel name called >exactly like this: #ApertCrouzon. Please read below: > > Date To Meet On: Friday, December 5, 1997 > > IRC Server: ChatNet (Any locations) > > Port Setting: 6667 > > Channel: #ApertCrouzon > > Time: 10:00 PM ET/9:00 PM CT/8:00 PM MT/7:00 PM PT/5:00 PM HT > > To check out the mIRC Help Page for Windows 3.x and Windows 95 users at: > http://people.delphi.com/kbranstetter/mirc1.html > You can download mIRC 5.11 there. > > For MAC Users: Please download IRCle at: > http://www.amug.org/~ircle/ > >If anyone needs help or have questions on accessing the chat on ChatNet. >please email to Kristi at either: > > mailto:kristib@qni.com or mailto:kbranstetter@delphi.com > >Everyone is welcome!!! > >Thanks and please join the fun!!!! > >Hugs, Penny > >http//www.earthlink.net/~hwy2heaven/ > >mailto:hwy2heaven@earthlink.net >mailto:phalvers@u.washington.edu > ========================================================================= Date: Fri, 5 Dec 1997 23:51:41 -0800 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Joseph Chan <jchan7@PACBELL.NET> Subject: Re: crawling MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

Roxy did the same "weird thing!" (I wonder if there's a correct term for this?) She'd arch her back and even developed a few bald spots on her head. We thought she simply enjoyed looking at an upside down world . She eventually walked at 18 months.

Rose La Mirada, CA ========================================================================= Date: Sat, 6 Dec 1997 21:37:25 -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: Eric & Penny Halverson <hwy2heaven@EARTHLINK.NET> Organization: Crouzon Support Network Subject: Re: ApertCrouzon's Chat Tonite 12/5 (fwd) MIME-Version: 1.0 Content-Type: text/plain; charset=koi8-r Content-Transfer-Encoding: 7bit

Hi Dan

No problem at all. There were few more people showed up and everyone seemed to have a good time chatting with one another.

There will be more times available for chatting again so you can count on that. The next chatting will be Monday, Dec 8th but I will send a reminder.

Also future plans for Parents Nite Chat possibly on Tuesdays at a earlier time slots. Another possibility will be an online interview with the professionals in the field of craniofacial teams.

We also have the AIM which is AOL Instant Messenger that provide an one to one online chatting and you don't have to be an AOL Member to join and the neat thing is, it's FREE!!

If you or anyone here have questions or suggestions, please contact me at anytime. You can also look at my Crouzon's website below too. Take care.

Hugs, Penny

http://www.earthlink.net/~hwy2heaven/

mailto:hwy2heaven@earthlink.net mailto:phalvers@u.washington.edu

The Stroupes wrote: > > Penny, > > So sorry I was so antisocial last evening. Judy went to bed earlier > with a terrible cold and I was waking her with my noisey keyboarding. She > gets real grumpy when she is sick, unlike me who gets whiney. Hopefully, we > will get another chance to chat. > > Dan Stroupe > ========================================================================= Date: Sun, 7 Dec 1997 01:36:35 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: DnJJenner <DnJJenner@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Re: ApertCrouzon's Chat Tonite 12/5 (fwd) Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Penny, sorry we missed the Chat, I was looking forward to it, I went looking for the chat room, during the day, I miss understood when it was. I sure hope you will do it again so we can try to be there next time.

Dawn ========================================================================= Date: Sun, 7 Dec 1997 12:44:27 -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: Penny Halverson <phalvers@U.WASHINGTON.EDU> Subject: Reply to Jennerjohn In-Reply-To: <29e0187b.348a43f6@aol.com> MIME-Version: 1.0 Content-Type: TEXT/PLAIN; charset=US-ASCII

Hi!

I will send a reminder for tomorrow nite chat!!! Take care. :-)

Hugs, Penny

http://www.earthlink.net/~hwy2heaven/

mailto:hwy2heaven@earthlink.net mailto:phalvers@u.washington.edu

On Sun, 7 Dec 1997, DnJJenner wrote:

> Penny, > sorry we missed the Chat, I was looking forward to it, I went looking for the > chat room, during the day, I miss understood when it was. I sure hope you > will do it again so we can try to be there next time. > > Dawn > ========================================================================= Date: Mon, 1 Dec 1997 07:45:09 -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: sad story MIME-version: 1.0 Content-type: text/plain; charset="us-ascii"

This is a multi-part message in MIME format.

------=_NextPart_000_01BCFE3B.D87E1B40 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit

I have one word! HOW?

George

p.s. They will be in our prayers...

To Ynve,

I would love to get a copy of an article on this surgeon who is doing research on mobility problems especially with fused elbows.

Hugs, Penny

http://www.earthlink.net/~hwy2heaven/

mailto:hwy2heaven@earthlink.net mailto:phalvers@u.washington.edu

Denise I am so sorry to hear of these poor children and their family. By heart and prayers goes out to all involved. Robyn Johnston

Hi Penny

Sorry if was indistinct about the article. He has not begun to wright jet, just started his research, but as soon as I know somthing more I let You know.

Hej då

Hi Denise!

Just got a call from Jana last week and it was sure good to hear from her again and glad to know that Sadie's health is doing better.

I am so sorry to hear about what had happened in your hometown. The relatives and friends involved are in my thoughts and prayers.

I want you to know that from my family, our hearts, thoughts and prayers are with you and your family always. Anytime you would like to talk, please feel to and would love to hear from you too.

With Much Hugs, Penny

http://www.earthlink.net/~hwy2heaven/

mailto:hwy2heaven@earthlink.net mailto:phalvers@u.washington.edu

On Mon, 1 Dec 1997, Denise Graham wrote:

First of all, Chad and Denise, sorry to hear about what happened in your town. It really makes you wonder, doesn't it? I''ll say a prayer for that poor mother of those children.

Hope everyone had a nice Thanksgiving.

They also said that there was a possible because of her narrowed nasal passages that she failed the test in NICU. And then there is just the congestion that a new baby has from the womb.

Would appreciate any feedback.

Hope all is well with everyone.

Janine

Then you solved the problem because it got through. Welcome back.

Well, I broke down and took Jordan to the ENT..myself as the referring physician (I hate it when they ask that..imagine me just wanting to take my son to the Dr. based on my own observations???!!)

Anyway..any similar problems out there??? I don't think he has apnea..I just think hes snoring b/c of the left side of his nose has more tissue..geeze I can see it w/ my naked eye!!

Thanx in advance for ya'lls thoughts

Jenn

Janine,

Hi all,

Tried to send last week. Now that email is repaired, too lazy to compose new message. Do want to add my thoughts for Chad & Denise & their hometown.

Dan Stroupe

-----Original Message----- From: stroupes <stroupes@> To: Apert List <Apert@listserv.aol.com> Date: Saturday, November 22, 1997 3:46 PM Subject: Hello again!

Joanne,

It's me again!

Tried to forward some old messages from a week ago. They did not post right away so I am trying to send this message. Sorry for all the tests.

Really makes you wonder about the world today. We'll keep them in our thoughts.

In a message dated 97-12-01 18:36:21 EST, you write:

<< Janine

P.S. I am having trouble getting into the new pages that were posted:www.apert.org. >>

Robyn & the Plum, Eugene, OR

We are still thinking about and praying for the family of the 4 little girls.

Robyn & the Plum Eugene, OR

Kia Ora

Janine - further to your query re shoulders.

Amy has just had another assessment with her physio - no further restriction fortunately. She explained it like this:

Of course she sat there and grinned anxiously through the whole hour and a bit and wouldn't say a word!!

They recommended shoe laces that wrap around themselves rather than bothering trying to get her to tie them herself at this stage. Anyone tried them?

Greetings from warming-up New Zealand

I have no idea why of course, but it worked.

Cheers, Ann

Robyn,

Denise and Marianne:

This is a multi-part message in MIME format.

------=_NextPart_000_01BCFF02.74819C80 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit

For once we have 95% of our shopping done, and trying to find the gifts for the other 5%.

Later, George

p.s. Had to brag!!!!

http://www.iglou.com/photos New Tips and Photos added 11/14/97 New and improved design | Photo Tip page, help for the Beginner to Advanced levels.

Yngve

We also would be very interested in anything the surgeon learns, since Krista also has fused elbows.

In fact (half joking, half serious here) if he needs people with fused elbows, we'd be happy to have him fly us to Sweden. :-) Both my wife and I have Swedish blood.

Hi Penny

Sorry if was indistinct about the article. He has not begun to wright jet, just started his research, but as soon as I know somthing more I let You know.

Hej då

Hi Jenn,

Robyn Johnston Eugene, OR

Good luck with the doctors and enjoy your visit back home.

Also, Ann, thanks for the update on the shoulders. Hope Amy is doing well. I still have to make the appt. for the orthopedist to check Emily out. Just doesn't seem like there is enough time.

Best wishes to everyone,

Hello to all and best wishes during the holiday shopping! Twenty-three days and counting! All I want is SNOW! P-L-E-A-S-E!

Denise,

Kia Ora Ann,

Please feel free to reproduce my message in your newsletter. It did my heart good to know that together, we might be able to help more people. Can you tell me more about the centre where you work?

Hello everyone!

I've rambled on enough for now. Hope all is well! It's hard to imagine weather warm enough for swimming!

Mairanne,

Hope everyone else is doing well braving the malls..watch out for Shopping rage..seems to be the next likely thing to hit America

This is a multi-part message in MIME format.

------=_NextPart_000_01BCFFCD.656C34A0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit

Later George

http://www.iglou.com/photos New Tips and Photos added 11/14/97 New and improved design | Photo Tip page, help for the Beginner to Advanced levels.

Kia Ora Ann!

Hope you got some sleep last night!

I have another favor...can I get a copy of the newsletter when my message appears? I can send my address to your private e-mail address, if you don't mind. Thanks!

Kia Ora Joanne

Must go - I promised Howard he could have the computer an hour ago and I have a heap of reading to do for a meeting tomorrow.

Thanx in advance for ya'lls imput

Enjoy it while it lasts. ------Don

This is a multi-part message in MIME format.

------=_NextPart_000_01BD00A7.A07B1040 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit

That sound like something my father would have said, Teach them to walk then they get into everything, teach them to talk and they never shut up!!

Or one of my favorite quotes "Be careful what you wish for you just might get it"

Later, George

Gee George..those words have been spoken to me by my mom from, ohhh about birth..and shes always been right....her words of wisdom on this subject mimic yours and Dons exactly!! HA!!!

Hi everyone!!!

Date To Meet On: Friday, December 5, 1997

IRC Server: ChatNet (Any locations)

Port Setting: 6667

Channel: #ApertCrouzon

Time: 8:00 PM ET/7:00 PM CT/6:00 PM MT/5:00 PM PT/3:00 PM HT

To check out the mIRC Help Page for Windows 3.x and Windows 95 users at: http://people.delphi.com/kbranstetter/mirc1.html You can download mIRC 5.11 there.

For MAC Users: Please download IRCle at: http://www.amug.org/~ircle/

If anyone needs help or have questions on accessing the chat on ChatNet. please email to Kristi at either:

mailto:kristib@qni.com or mailto:kbranstetter@delphi.com

Thanks and please join the fun!!!!

Hugs, Penny

http//www.earthlink.net/~hwy2heaven/

Hi everyone!!!

Date To Meet On: Friday, December 5, 1997

IRC Server: ChatNet (Any locations)

Port Setting: 6667

Channel: #ApertCrouzon

Time: 10:00 PM ET/9:00 PM CT/8:00 PM MT/7:00 PM PT/5:00 PM HT

To check out the mIRC Help Page for Windows 3.x and Windows 95 users at: http://people.delphi.com/kbranstetter/mirc1.html You can download mIRC 5.11 there.

For MAC Users: Please download IRCle at: http://www.amug.org/~ircle/

If anyone needs help or have questions on accessing the chat on ChatNet. please email to Kristi at either:

mailto:kristib@qni.com or mailto:kbranstetter@delphi.com

Thanks and please join the fun!!!!

Hugs, Penny

http//www.earthlink.net/~hwy2heaven/

mailto:hwy2heaven@earthlink.net mailto:phalvers@u.washington.edu ========================================================================= Date: Thu, 4 Dec 1997 14:45:21 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: ETolson643 <ETolson643@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Re: crawling Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

I am resending this because the earlier message I sent to the list did not thru as a reciept to let me know that it went to the list. Thanks Hugs, Penny

Hi everyone!!!

Date To Meet On: Friday, December 5, 1997

IRC Server: ChatNet (Any locations)

Port Setting: 6667

Channel: #ApertCrouzon

Time: 10:00 PM ET/9:00 PM CT/8:00 PM MT/7:00 PM PT/5:00 PM HT

To check out the mIRC Help Page for Windows 3.x and Windows 95 users at: http://people.delphi.com/kbranstetter/mirc1.html You can download mIRC 5.11 there.

For MAC Users: Please download IRCle at: http://www.amug.org/~ircle/

If anyone needs help or have questions on accessing the chat on ChatNet. please email to Kristi at either:

mailto:kristib@qni.com or mailto:kbranstetter@delphi.com

Thanks and please join the fun!!!!

Hugs, Penny

http//www.earthlink.net/~hwy2heaven/

mailto:hwy2heaven@earthlink.net mailto:phalvers@u.washington.edu ========================================================================= Date: Thu, 4 Dec 1997 15:29:42 -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: Don Sears <dsears@SCRS.STATE.SC.US> Subject: Re: crawling MIME-Version: 1.0 Content-Type: text/plain

Hi everyone! Here is another humor to make your day better. Cheer! Hugs, Penny

---------- Forwarded message ---------- Hi Penny, I rarely forward email humor, but I thought this one was pretty funny. Enjoy!! Margaret

Hi Kristi!

You got that right my friend!!!! I have a ball in chatting with you and the other people from widesmiles!! I love it!!!

Hopefully the people here and the Apert's list can join us for the big Friday nite chat!!!!! I will be sending a reminder tomorrow!!!

Hugs, Penny

http://www.earthlink.net/~hwy2heaven/

mailto:hwy2heaven@earthlink.net mailto:phalvers@u.washington.edu

On Thu, 4 Dec 1997, K. Branstetter wrote:

To Kathy Sahlhoff,

Kia Ora Jenn

This was going to be a short response but you have touched on one of my hobbie horses - therapists wanting our children to follow "normal" patterns. Read on if you have time!

>I'm calling the developmental people today..they have worked w/ several Aperts >kids, so maybe they have a general idea..

>I'm not worried I'd just like him to do it, I feel like hes flunking a test >when I have to tell the Dr. "no, that hes doesn't do...but listen to what he >does do.." Ya know how it is..

And Don Sears talks about Teeter doing the same thing one of the children in our NZ Network did:

Okay, I'll stop now.

I'm really stopping this time!

Kia Ora

I wonder if anyone has done any research on the impact on parents of the use of the term "Facially Deformed" when talking about our children??!!

Off to the store to buy our groceries for the next month.

Ann

Hello!

Marjorie & David,

I am so happy to hear that BJ is doing better and that he's going home! YAHHHHHHHH!!!

This is a multi-part message in MIME format.

------=_NextPart_000_0042_01BD0100.F5C68DA0 Content-Type: text/plain; charset="iso-8859-1" Content-Transfer-Encoding: quoted-printable

Dear Jenn,

Michele

------=_NextPart_000_0042_01BD0100.F5C68DA0 Content-Type: text/html; charset="iso-8859-1" Content-Transfer-Encoding: quoted-printable

<!DOCTYPE HTML PUBLIC "-//W3C//DTD W3 HTML//EN"> <HTML> <HEAD>

Dear BJ, David and Marjorie:

What great news. Congratulations and best wishes to you all. Good luck with the next steps. It must feel so good to be home together again.

All the best,

Scott

Dear Harmons,

In a message dated 97-12-04 20:57:50 EST, you write:

Bravo for BJ!!! This has got to be the best Christmas present you could have at this point!! Good luck to you all! We'll keep you in our prayers.

Hello Harmon Family!

How completely thrilled I was to read about BJ's progress! What a great Christmas! I will continue to pray for his progress and for strength for all of you!

Ann,

Way to go! You definitly have a way with words! Thanks for saying what everyone (especially the inexperienced) needed to hear!

This is a multi-part message in MIME format.

------=_NextPart_000_01BD015F.F535B320 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit

On a lighter note: I heard someone say they got a new bird on here, Great. But did I ever tell you what happen with me? Guess not, well here goes:

Okay I stole it, but I liked it!!

Later, George

p.s. Glad to see BJ is making some progress. ------=_NextPart_000_01BD015F.F535B320 Content-Type: text/html; charset=ISO-8859-1 Content-Transfer-Encoding: quoted-printable

Hello everyone!

Hi everyone!!!

Tonite is ApertCrouzon Chat Tonite!! So in case you haven't had a chance to download the mIRC for Windows 3.x and 95 or IRCle for MAC users,

Date To Meet On: Friday, December 5, 1997

IRC Server: ChatNet (Any locations)

Port Setting: 6667

Channel: #ApertCrouzon

Time: 10:00 PM ET/9:00 PM CT/8:00 PM MT/7:00 PM PT/5:00 PM HT

To check out the mIRC Help Page for Windows 3.x and Windows 95 users at: http://people.delphi.com/kbranstetter/mirc1.html You can download mIRC 5.11 there.

For MAC Users: Please download IRCle at: http://www.amug.org/~ircle/

If anyone needs help or have questions on accessing the chat on ChatNet. please email to Kristi at either:

mailto:kristib@qni.com or mailto:kbranstetter@delphi.com

Everyone is welcome!!!

Thanks and please join the fun!!!!

Hugs, Penny

http//www.earthlink.net/~hwy2heaven/

Hi everyone:

Anyway sorry for my going on and on.

Dear Marjorie:

Hej Marjorie and David

Wonderfull to hear that BJ is coming home. What a christmas gift. Take care of him and your self.

Hej då

Dear Marjorie and David,

Cute George, Really cute.

This is a multi-part message in MIME format.

------=_NextPart_000_0052_01BD0225.AABE84E0 Content-Type: text/plain; charset="iso-8859-1" Content-Transfer-Encoding: quoted-printable

Dear Majorie and David,

Glad to hear that BJ had made such good progress, and will be coming = home. You'll be in our thoughts and prayers. Good luck with all the = new adjustments.=20

Michele and Mark

------=_NextPart_000_0052_01BD0225.AABE84E0 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 4.71.1712.3"' name=3DGENERATOR> </HEAD> <BODY bgColor=3D#ffffff> <DIV>Dear Majorie and David,</DIV> <DIV> </DIV> <DIV>Glad to hear that BJ had made such = good=20 progress, and will be coming home.  You'll be in our thoughts and=20 prayers.  Good luck with all the new adjustments. </DIV> <DIV> </DIV> <DIV>Michele and Mark</DIV> <DIV> </DIV></BODY></HTML>

Brenda,

Very simple. Any kind of hand lotion, applied as often as you can and massage the scar tissue to help break it down as it heals.

Glad the surgery went well.

Take care.

Christine

Dear Julie:

It's nice to hear that AJ is doing so well. He was one of the first children that I read about when I got on line. You truly did a wonderful thing with AJ.

Marjorie:

As for putting him in a nursing home, I personally wouldn't be able to do it either, at least not until I gave it a try at home first.

You hang in there and remember we are all thinking about you and your family.

Also, Ann, thank you for your kind words to me. I guess you just need to hear that it's ok to feel all these feelings once in a while, but we just keep on ticking, don't we?

Don,

All my best,

Christine

Julie, I wanted to thank you for your note. I was so happy to hear that AJ is doing so much better. Like AJ, BJ has a partial ventalator too. I hope some day down the road BJ will be off his too.

I do have a favor to ask. I need some real simple recepies of meals to fix. It seems that there won't be much time for cooking. Thanks again for all the help.

Marjorie,

So glad to hear that BJ is finally coming home. You guys have been through an awful lot and we pray things will improve from here on.

I would recommend that you see how things go with as much nursing as you can get or afford and cut back from there. It is much easier to do that way than to try to add hours later.

Good luck and we are so glad to hear BJ will be home for Christmas.

Dan -----Original Message----- From: MHTeach102 <MHTeach102@AOL.COM> To: APERT@LISTSERV.AOL.COM <APERT@LISTSERV.AOL.COM> Date: Thursday, December 04, 1997 9:43 PM Subject: An Update

Hi Andrea

Great news Marjorie! All the best for the big move.

Hi again

And you'll be pleased to know that's all I am going to say this time!

Cheers, Ann NZ

Hi Jenn

Same message to you and and anyone else interested that I sent to Andrea. If you can't find the paper let us know your address and we will send a copy.

May the Force be with you.

Penny,

Dan Stroupe

Hi Dan

No problem at all. There were few more people showed up and everyone seemed to have a good time chatting with one another.

There will be more times available for chatting again so you can count on that. The next chatting will be Monday, Dec 8th but I will send a reminder.

Also future plans for Parents Nite Chat possibly on Tuesdays at a earlier time slots. Another possibility will be an online interview with the professionals in the field of craniofacial teams.

We also have the AIM which is AOL Instant Messenger that provide an one to one online chatting and you don't have to be an AOL Member to join and the neat thing is, it's FREE!!

If you or anyone here have questions or suggestions, please contact me at anytime. You can also look at my Crouzon's website below too. Take care.

Hugs, Penny

http://www.earthlink.net/~hwy2heaven/

mailto:hwy2heaven@earthlink.net mailto:phalvers@u.washington.edu

Hi!

I will send a reminder for tomorrow nite chat!!! Take care. :-)

Hugs, Penny

http://www.earthlink.net/~hwy2heaven/

mailto:hwy2heaven@earthlink.net mailto:phalvers@u.washington.edu

On Sun, 7 Dec 1997, DnJJenner wrote: