========================================================================= Date: Sun, 1 Mar 1998 06:34:19 -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: Joints

>One reason our hand surgeon gave us for not being able to use artificial >joints for Nicole's fingers was that artificial joints have a limited life >span (maybe 10 years) ....

We've been told the same thing. In addition to wearing out, children are growing. And an artificial joint won't grow as the child does. They usually go on to say that by the time the growth has stopped so that an artificial joint could be attempted (with the warnings about limited lifetime), the muscles will have atrophied from lack of use. So you have muscles with no joint when the child is young and (artificial) joints with no muscle when they are grown.

Bob Horning ========================================================================= Date: Sun, 1 Mar 1998 08:12:23 -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: Jack and Raquel <jara1@BELLSOUTH.NET> Subject: Tears MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

Hi everyone,

I have a general question for you all. My daughter Nicole (will be 5 months old March 3) has a real problem with tearing. Her eyes tear in doors ever so often but the real problem is outdoors. When her eyes get a glimpse of the sun boy do they start and we are here in sunny south Florida, so you can imagine no break from old Mr. Sun. We try to cover her infant carrier/car seat with a beach towel (not very attractive) we've even tried sun glasses (she's not too fond of those) so any suggestions will be more than welcome...talk to you all later.

Raquel.. ========================================================================= Date: Sun, 1 Mar 1998 07:58:33 -0800 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "Wittenburg, Mark" <Mark_Wittenburg@TEMPE.GOV> Subject: Re: Tears MIME-Version: 1.0 Content-Type: text/plain

We had a very similar situation.....we live in sunny Arizona. Jackie never goes outside without a hat. In the early days it was hard to find one that fit so we used a visor. Since we started when she was very young she is used to them---she still has a problem with sunglasses.

I think I remember our doctor suggesting we use saline drops to help moisturize her eyes. I think the eyes tear because the eyelids cannot close competely----due to shallow orbits. We hardly have a problem with tearing since Jackie had her forehead advancement. Hope it helps!! Jackie Lynn's mom--- Kathy

================================================================= Mark Wittenburg Senior Network Engineering Specialist City of Tempe http://www.tempe.gov/ 602-350-8237 markwi@tempe.gov

> ---------- > From: Jack and Raquel[SMTP:jara1@BELLSOUTH.NET] > Sent: Sunday, March 01, 1998 6:12 AM > To: APERT@LISTSERV.AOL.COM > Subject: Tears > > Hi everyone, > > I have a general question for you all. My daughter Nicole (will be 5 > months old March 3) has a real problem with tearing. Her eyes tear in > doors ever so often but the real problem is outdoors. When her eyes > get > a glimpse of the sun boy do they start and we are here in sunny south > Florida, so you can imagine no break from old Mr. Sun. We try to > cover > her infant carrier/car seat with a beach towel (not very attractive) > we've even tried sun glasses (she's not too fond of those) so any > suggestions will be more than welcome...talk to you all later. > > Raquel.. > ========================================================================= Date: Sun, 1 Mar 1998 08:02:17 -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: "Wittenburg, Mark" <Mark_Wittenburg@TEMPE.GOV> Subject: Re: Joints MIME-Version: 1.0 Content-Type: text/plain

We are looking into having Jackie's hands finished by Dr. Fearon in Dallas, Texas. He told me over the phone two weeks ago that he can put "bends" in Jackie's fingers, but not until she is at least seven. He says with these bends she can perform basic functions like tie shoes by herself, or button a shirt. He also mentioned that this idea has not been published yet, but will have to be soon. I have sent him some preliminary information on her. If we go further with this I will let you know what we find. ================================================================= Mark Wittenburg Senior Network Engineering Specialist City of Tempe http://www.tempe.gov/ 602-350-8237 markwi@tempe.gov

> ---------- > From: Frank & Annette Contrino[SMTP:contrino@BUFFNET.NET] > Sent: Thursday, February 26, 1998 6:15 PM > To: APERT@LISTSERV.AOL.COM > Subject: Re: Joints > > >Ann, > > > >The only thing I know about joints is what Dr. Upton has told me. I > remember > >asking him "why with all the medical science, couldn't he put joints > in my > >sons fingers"? He responded by saying, "I can put joints in fingers, > and I > >can transplant nerves, but unfortunately, I cannot transplant tendons > and > >ligaments which make the joints strong. Otherwise the joints would > be weak > >and floppy." Dr. Upton is Andrew's plastic surgeon for his hands and > feet. > > One reason our hand surgeon gave us for not being able to use > artificial > joints for Nicole's fingers was that artificial joints have a limited > life > span (maybe 10 years) so it's OK to give older people artificial knees > and > hips but to do this for a child means many surgeries throughout their > life. > That was in addition to the lack of blood vessels, tendons and > ligaments. > ========================================================================= Date: Sun, 1 Mar 1998 08:30:05 -0800 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "Wittenburg, Mark" <Mark_Wittenburg@TEMPE.GOV> Subject: Re: hurt feelings MIME-Version: 1.0 Content-Type: text/plain; charset="iso-8859-1"

My older children were having problems in school when Jackie was going through her major surgeries and looked so bad during recovery. I think their self esteem was low because Jackie was getting more attention, and they were missing out on all the action because they had to scool.

When she was mostly healed after a forehead advancement I brought her into their classrooms and THEY got to explain to their class how everybody is made up of ingredients....just like a cake....but people ingredients are genes and cells, etc. etc. and sometimes the person has five fingers, and sometimes they don't....and how RARE that is. One time we even taped all the kids fingers up to popsicle sticks and let them walk around without bending their fingers for an hour or so. This really seemed to wonders for everybody....let them know what it's like.

Now when we go to school everyone knows who Jackie is and she enjoys the attention. These kids are very open and don't have any problem asking about surgeries or whatever. Jackie also uses sign language.....so in the near future we will be going to the daycare to teach the kids some basic signs--the kids think it's neat.....of course Jackie's signs are altered because of her fingers, we say she stutters!!

Second grade is the PERFECT time for this kind of "lesson". We have found the teachers to be supportive as well; it takes the load off of them. We have found most teachers say nothing, because they don't know what to say. I will never forget Jennifer's teachers face when Jen got up for show and tell and told the whole class "my parents took my sister in to have her head cut off this morning".

Is there school counselor you could talk to? Could they have any suggestions?

Good luck!!!!!!!!!!!!!!!!!!!! Jackie Lynn's mom, Kathy

================================================================= Mark Wittenburg Senior Network Engineering Specialist City of Tempe http://www.tempe.gov/ 602-350-8237 markwi@tempe.gov

> ---------- > From: Judy Amerman[SMTP:jamerman@UTI.COM] > Sent: Tuesday, February 24, 1998 7:29 PM > To: APERT@LISTSERV.AOL.COM > Subject: hurt feelings > > Nidk is very happy child with a great disposition. He is in second > grade. > For the last few weeks when he comes home from school we talk about > his > day. Since the weather has been decent for the state of Illinios, the > kids > have been going outside for recess. > So when we are talking about his day at school; I ask him what did you > do > at recess. > HIs responses have been "Oh I just walked around" or I played with a > ball. > At that point I sometimes ask.Well who did you play with. He'll say "I > played by myself. Nobody wanted to play with me." > Do bear in mind though that Nick will not always initiate joing other > kids. > I think he thinks that they always have to come to him. Which does't > happen > often. > A few years ago I had him in little league, but grasping the bat was a > challenge for him. > A friend of mine was here a few days ago and spotted Nick outside > playing > with a soccer ball. She said that he handled the ball quite well, so I > think I will look into getting him in soccer. > He is also in cub scouts and just loves it but I don't see any forming > friendships there either. > Does anyone have any great ideas how I can help Nick with some more > socialization skills? > The only other child his age in the neighborhood is a boy a year > younger > than him. They play together frequently but lately there has been a > bad > sharing problem with both of them.and or one wants to do one thing and > the > other something else. > I just hate to think of him getting his feelings hurt because he is > different and him losing that sunny disposition and smiling face. > I hope I don't sound like a mother hen, but I am a little concerned > Thanks for your input > > Judy amerman > ========================================================================= Date: Sun, 1 Mar 1998 14:33:02 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jenngram <Jenngram@AOL.COM> Subject: Re: hurt feelings Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

On this issue, I just want to say what an excellent idea the popcicle sticks are to help kids understand what its like!!!! Makes them be more sympathtic I would think...Also, please keep us updated on the "bends" for the fingers. I would be interested on how it works, and the title of the published info..once it is..so we can read it also.

Thanks Jenn (Tampa/St. Pete) ========================================================================= Date: Sun, 1 Mar 1998 17:42:24 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: TDeakins1 <TDeakins1@AOL.COM> Subject: Re: Tears Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Our daughter, Casey, now eleven has that problem. It became somewhat better as she grew older. Even still, she is very light sensitive including super bright artificial light. We live in Florida, too, where we get approximately twice the light on a cloudy day than cities on a latitude equivilent to Philidelphia and north. The only solution we've found is polarized sun glasses. Since Casey wears glasses to augment her vision, "flip-ups" are what she most often gets. She misplaces them a lot - often permanently. Goes with the territory, as they say. Tony Deakins ========================================================================= Date: Sun, 1 Mar 1998 18:50:11 -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: tears MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

It was once explained to us that the frequent tears are as a result of smaller than usual ducts near the tear glands which do not carry the tears away.

During a recent thumb operation, our daughter's tear ducts were "flushed out" and that has helped a great deal. The benefits we are seeing now may not always last, but she will have other operations in the future, and we can always piggyback this simple procedure another time. In the meantime, I would recommend a hat. A large brim hat will also give another benefit, protection from the UV rays.

Not sure what it's like in the sunny south, but come summer in northern climates, you'd think people had never heard of skin cancer? Once thing with grown ups, but then they don't have their children adequately protected! Oh well, they print cancer warnings on cigarette packages and that doesn't seem to work either. Oh well, I guess you can't legislate common sense...stupidity seems to frequently win out with some folks.

Oh well, I am off topic. Good luck with the hat. ========================================================================= Date: Mon, 2 Mar 1998 13:46:00 +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: hurt feelings Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

Hi Judy et al

>So when we are talking about his day at school; I ask him what did you do >at recess. HIs responses have been "Oh I just walked around" or I played with >a ball. At that point I sometimes ask.Well who did you play with. He'll say "I >played by myself. Nobody wanted to play with me."

It sounds like Nick is going through the same thing we are with Amy. I won't go into that now because she has her IEP next week and we will be discussing it in depth at that time - if any good suggestions come out of that session I will pass them on.

One thing that did come out of a teacher aides' meeting this morning is that there is a large number of children wandering around the school at lunchtime with noone to play with - and they aren't ALL children who look different, but they don't appear to have the strategies for initiating interactions that will lead to play with other children. We didn't come up with a strategy to handle this but we are giving it further consideration.

What I do have (and have sent to others who have requested a copy because they can't obtain it locally) is an Australian paper delightfully entitled "The Teasing Syndrome in Facially Deformed Children". It was written by Jeffrey M. Gerrard, Child Psychiatric Consultant to the Australian Cranio-Facial Unit in Adelaide, and published in the A.N.Z. J. Fam. Ther. 1991, Vol.12, No.3, pp.147-154 (?Journal of Family Therapy/Therapeutics?). The work was probably done in 1986 as the paper was presented at a conference in 1987, but my literature searches haven't come up with any followup work carried out since then - hopefully this isn't a sign of the importance placed on this subject. The techniques discussed are interesting.

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 picture 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.

Regards, Ann NZ ========================================================================= Date: Sun, 1 Mar 1998 19:49:33 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Thornq <Thornq@AOL.COM> Subject: Re: Tears Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Raquel,

Have you tried fake tear drops? You can put those in about three times each day. That may be what you could use in the sun. Hope that helps.

Lynn Thornquist (Holliston, MA) ========================================================================= Date: Mon, 2 Mar 1998 08:44:00 -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: Tears MIME-Version: 1.0 Content-Type: text/plain

On the subject of tearing - Teeter had this same problem and still does to a certain extent but has outgrown it for the most part. Our ENT said it was blocked tear ducts on the inside - apparantly the 'other' side of the duct empties into the sinus cavity, and sometimes in Apert this is blocked. This is why your nose runs when you cry. Our kids have to let it all come out through the eyes if the inside track is blocked. The ENT suggested massaging the area just under the eyes and near the nose, that this could help to open the passages. We did this, but I don't know if that's what helped. It can also be corrected surgically if they're already in there for some other reason --Don ========================================================================= Date: Mon, 2 Mar 1998 14:45:07 -0600 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Judy Amerman <jamerman@UTI.COM> Subject: Sierra MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit

To all, Last summer I was visiting my family in Monroe, Michigan and as I was leaving the store, I came face to face with a mother and her apert syndrome daughter. I just contacted Sierra's mother Nancy about the list serve. Unfortunately she doesn"t have a computer to find out first hand about this wonderful service that Don Sears has created. Nancy has agreed to let me give out her phone number just in case there is someone close to her that may like to talk and possibly meet Sierra. It is area code 313-848-3069 Sierra is 9 years old and is a real sweetheart. She lives in Erie, Michigan which is just minutes south of Toledo, Ohio.. If anyone lives in that vicinity. Be sure to look her up.

Judy ========================================================================= Date: Tue, 3 Mar 1998 13:34:56 +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: Tears and palates Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

>the duct empties into the sinus cavity, and sometimes in Apert this is >blocked.

Do our children have sinus cavities? If so, they are probably a lot smaller than regular sinus cavities, which would aggravate this problem. ??

Our ENT described the nasal area space to mouth space ratio like a two storied building with the ceiling of the bottom floor raised - there is only so much space, and if one area is raised it must reduce the other. Amy has a very high palate, which means she has a lot less space in the nasal area - probably the same as most of our special children.

On the subject of which, have any children had palate remodelling done where an actual cleft is not present? If so, has it helped with eating and speech?

Ann NZ ========================================================================= Date: Mon, 2 Mar 1998 19:32:20 -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: Sensory Integration MIME-Version: 1.0 Content-Type: multipart/alternative; boundary="----=_NextPart_000_0004_01BD4611.EAE4E660"

This is a multi-part message in MIME format.

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Has anyone had any expeirance with Sensory Integration Therapy = concerning their children Thanks Mark dsprado@penn.com

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

<META content=3Dtext/html;charset=3Diso-8859-1 = http-equiv=3DContent-Type> <META content=3D'"MSHTML 4.72.2106.6"' name=3DGENERATOR> </HEAD> <BODY bgColor=3D#ffffff> <DIV><FONT color=3D#000000>Has anyone had any expeirance with Sensory = Integration=20 Therapy concerning their children T</FONT><FONT = color=3D#000000>hanks</FONT></DIV> <DIV><FONT color=3D#000000>Mark</FONT></DIV> <DIV><FONT color=3D#000000><A=20 href=3D"mailto:dsprado@penn.com">dsprado@penn.com</A></FONT></DIV> <DIV><FONT color=3D#000000></FONT>&nbsp;</DIV></BODY></HTML>

------=_NextPart_000_0004_01BD4611.EAE4E660-- ========================================================================= Date: Tue, 3 Mar 1998 08:48:33 -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: NEW FAMILY MIME-version: 1.0 Content-type: text/plain; charset="us-ascii"

I meet a new aperts baby a couple of days ago. His name is Timothy. His dad is 28 years old and also has aperts. His mom has CP, leagally blind, and has a b-6 vitaman defficiancy. They are a sweet couple. The baby is healthy weighing in at 9lbs 4oz. This family has no acess to the internet, but I was wondering if I get permission from them would some of you send them encouraging cards. They are going to need all of the support they can get. They are on cloud nine right now, but reality has not set in yet. He can not miss much of his work, and she is in a wheelchair. Traveling to all of the doctor visits and getting through each surgery is going to be a big challange for this family. I remember how hard it was for us, without any problems and having lots of family. I am going to help them as much as I can. We are hoping they will go to Shriner's for hands, they provide transportation, and go to Chattanooga for cranial. This is only 3 hours away.

I hope everyone is doing well. We are doing good here. Still fighting insurance problems, but it is more for all of the states children, than just Daryl. Our states system is pretty bad. We are trying to change that.

Denise Graham ========================================================================= Date: Tue, 3 Mar 1998 11:22:29 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jenngram <Jenngram@AOL.COM> Subject: Re: NEW FAMILY Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Denise,

Just curious, how sever is the dads case of Apert? I would be more than happy to drop them a letter, I can't even imagine how stressful this will prove for them, but I am so glad the baby is healthy and doing well..and they too are so happy.

sorry to hear TN has such problems. Joe is thinking of doing his residency (surgery) there (Vanderbilt)..so your fighting may prove helpful to us in the next year or so!!!! So keep it up!!!!!!!!!!!! hahahaha

Jenn(Tampa/St. Pete) ========================================================================= Date: Tue, 3 Mar 1998 14:02:07 -0800 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "Christine L. Clark" <apertnet@IX.NETCOM.COM> Organization: Apert Support & Information Network Subject: Mother passed away MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

All members of the listserv,

Since many of you have written to me directly I figured this was the easiest way to explain to everyone why I haven't responded for awhile.

I was called out of town unexpectedly on February 6th and was only home once for two days before I went back. I just returned on March 1st.

My mother was extremely ill in the hospital with heart problems and recovered enough to return home but then my father had to call an ambulance for her again two days later. She stayed on a ventilator for 5 days until pneumonia took her life on February 24th. Fortunately for us she was coherant so we could communicate with her. She, of course, had to write to us. Unfortunate for her though that they couldn't sedate her while on the vent because of her unstable condition. It was very painful for her.

My family has designated this network for donations in her memory and so I will be getting the non-profit soon! She would be very glad because she was one of my biggest supporters. So is my Dad but he is pretty lost right now after losing his wife of 53 years. We will miss her dearly!!

I really feel for BJ and the Harmon's, even more than before. After going through the emotional roller-coaster ordeal in the hospital for two weeks, I don't know how you have done it this long!!!! My prayers are with you!!!!

I will try to answer any messages as soon as I can. As you can imagine, my house is a disaster (Jack did his best as Mr. Mom - although, he is glad to be replaced, hah!), I have many bills to catch up on and when I opened my e-mail for the first time today I had 485 MESSAGES - OUCH!!!!

Bare with me as I get unburied. ] Thanks.

Christine Clark Apert Support & Information Network ========================================================================= Date: Tue, 3 Mar 1998 17:18:07 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Gaylann1 <Gaylann1@AOL.COM> Subject: Mother passed away Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Christine,

So sorry to hear about your Mother. My parents have been married 62 years!! They are in their 80s and I think about them all the time. We are pretty close and can't imagine loosing them.

My sympathy and prayers are with you.

Gaylann, Blakes Grandmother Cordova, TN ========================================================================= Date: Tue, 3 Mar 1998 18:57:27 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Thornq <Thornq@AOL.COM> Subject: Joints Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

This is a note to everyone:

There has been alot of talk about joints lately and I have a little bit more to add. I went to see Dr. Upton today and I was discussing with him about implants of joints. He agreed that it is tough putting joints in young kids because artificial joints do not grow, but he also added that the artificial joints "just don't work". They are not strong enough and he said that the joints in the middle three fingers are not full joints. They are missing some vital bone structure. He did say however that the "pinkie" finger is a possibility. He is not sure why the bone structure is different between the fingers, but it is.

I'm sorry, but I do not remember who spoke of the "bender" joints. He also had a comment on that. He said that he has seen them put in, in the past and it does not work all that well. He did say, however, that if you have it done and it works well, please let him know.

He does not feel confident about joint implants. He has done some himself and not had very good results. Dr. Upton also said that it is virtually impossible for children who have type 2 or 3 hands. Looks like it is not in our future. But you never know what the future can bring.

Talk to everyone later.

Lynn Thornquist (Holliston, MA) ========================================================================= Date: Tue, 3 Mar 1998 18:49:34 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Thornq <Thornq@AOL.COM> Subject: Re: Mother passed away Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Christine,

Sorry to hear about the loss of your mother. I'm sure it has been a hard time for you. I lost my grandmother a couple of years ago and we had to communicate the same way. Good luck on getting caught up.

Lynn Thornquist (Holliston, MA) ========================================================================= Date: Tue, 3 Mar 1998 18:01:09 -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: ROBIN L HILL <CARMENRAE@PRODIGY.NET> Subject: New Addition to APERT List Server MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit

Hi everyone. Our names are Mike and Robin Hill. We live in Newnan, GA which is 30 miles southwest of Atlanta. Robin and I received a new addition to our family on January 18, 1998. Our new addition is named Carmen Rae Hill and she weighed in at a strong 8 pounds. Robin had a picture perfect pregnancy, so you can imagine our surprise when Carmen was born with APERT Syndrome. Robin and I neither one had ever heard of APERT, but we have become somewhat educated in a very short period of time. Both of us have access to the Internet at work and I spent an afternoon searching for information about APERT. During my search, I found Teeter's Page and printed the information. I called Don Sears that very evening to introduce myself. We had a great conversation and it was comforting to know that I could share my experiences and feelings with someone who had already been through what we were just beginning. After talking with Don, Robin and I purchased a computer so that we could access the Internet at home. Carmen's first surgery (on her head) is scheduled for July 21, 1998. Obviously, we are very scared and concerned for the well being of our precious little girl. Reading all the stories has helped us to understand everything that we will be experiencing. Don added us to the ListServer and we have been reading all the various E-Mails. We are currently on the Internet at <CARMENRAE@PRODIGY.NET>. We accessed the Internet via prodigy because it was already loaded on our computer with 2 free months. We will probably be changing to America On Line soon. We will let everyone know if our address changes. We just wanted to let you all know that we are here and how much we already appreciate each one of you. We look forward to hearing from you. God bless each of you. Mike & Robin Hill ========================================================================= Date: Tue, 3 Mar 1998 21:50:37 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jack and Raquel <jara1@BELLSOUTH.NET> Subject: Various MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

Welcome to Mike and Robin. We are also new to the listserver. Our daughter Nicole was born on October 3, 1997 also with a healthy 8 pounds. You will find this service an asset.

We want to thank all of you that gave us tips on how to handle the tearing eyes. Now we have another question...

Nicole was seen at a Pedi Therapy Assoc for an Occupational evaluation. The therapist mentioned that she wanted to see Nicki over the next several months twice a week. After the Occupational workup, we received a call from the same Therapy Associates to schedule Nicki for a physical therapy evaluation also. Is this a normal procedure??? Do Apert children go for occupational therapy as well as physical therapy? If so, what is the normal beginning rate? Once a week, twice a week? We want to do what is best for Nicki, however, it is sometime hard to be able to make a twice a week therapy appointment not to mention the twice a week co-payment!

To the Clark family, Our thoughts and prayers are with you.

Jack and Raquel Miller ========================================================================= Date: Tue, 3 Mar 1998 22:27:58 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jack and Raquel <jara1@BELLSOUTH.NET> Subject: E-Mails MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

Hi everyone,

My husband and I are new in the listserver we've only been on for a few weeks. At first we were very excited because we were getting up to 30 e-mails a day and now it has trickled down to 5 or 6. Our daughter Nicole is very young she is only 5 months old today. So we have only just begun, we have yet to go through her first surgery, which we will know tomorrow when it will be scheduled, we are anticipating some time in April. We want/need as much information as we can possibly get. I know a lot of you are tired of reading so many e-mails on a daily basis and a lot of them really don't interest you at all because basically you've been there done that. BUT, and that's a big But, there are some of us beginners that don't mind reading all the e-mails because we can learn so much from them. A question that A has for B might actually interest C without A and B even knowing it. I'm sure that there are a lot of people that feel the same way we do. So please don't stop writing to each other and copying the listserver. For those of you that are not interested in reading all the e-mails, just simply look at the subject, you can gather from it what its mainly about, so instead of reading it, just delete it. I know that it takes time to load all the e-mails in, but isn't this what its all about. A bunch of people all with the same interest, our beautiful children. I can't speak for everyone, I can only speak for my husband and myself, we look forward to every afternoon when we arrive from work to turn on our computer and read the e-mails recieved, it's our daily therapy, believe it or not it is. I apologize for this long and draging e-mail, but it has been eating me up all week.....Let those e-mails roll........

Raquel Miller ========================================================================= Date: Tue, 3 Mar 1998 21:37:02 -0600 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Chad & Denise Graham <cgraham@INFOAVE.NET> Subject: MOTHER PASSED AWAY/THERAPY MIME-version: 1.0 Content-type: text/plain; charset="us-ascii"

Christine,

So sorry to hear about your mother. No matter how prepared you think you are it is still a tough thing to deal with. At least you got to be with her. Monte has had his baby. It was born with aperts, but they couldn't be more thrilled. He name is Timothy, and he is healthy. I imagine it will be even more difficult to get that story you wanted him to write for the newsletter.ha...ha...

Jenn,

The dad is moderate in the aperts deformities. Surgeries back then were a lot different than now. He is legally blind and wears hearing aids because of premature birth. He is a delight to talk to. Did you know that they used to use your rib bone to rebuild your forehead and face?! WOW...things have come a long way!

Jack and Raquel,

My son Daryl received Occupational and Physical twice a week when we first started at 3 months old. He now gets speech and occupational twice a week and physical once. I strongly believe this along with working with him at home is the reason his is age appropriate level. His speech is a little behind, but not much. He tends to start things late, but then when he gets the hang of it...LOOK OUT! If you only want to do sessions once a week, then you could tell them that and have them give you an outline of what to do and how. You could work with her at home yourself. Good Luck!!

Denise Graham ========================================================================= Date: Tue, 3 Mar 1998 22:19:05 -0600 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Judy Amerman <jamerman@UTI.COM> Subject: Re: New Addition to APERT List Server MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit

---------- > From: ROBIN L HILL <CARMENRAE@PRODIGY.NET> > To: APERT@LISTSERV.AOL.COM > Subject: New Addition to APERT List Server > Date: Tuesday, March 03, 1998 12:01 PM > > Hi everyone. Our names are Mike and Robin Hill. We live in Newnan, GA > which is 30 miles southwest of Atlanta. Robin and I received a new > addition to our family on January 18, 1998. Our new addition is named > Carmen Rae Hill and she weighed in at a strong 8 pounds. Robin had a > picture perfect pregnancy, so you can imagine our surprise when Carmen was > born with APERT Syndrome. Robin and I neither one had ever heard of APERT, > but we have become somewhat educated in a very short period of time. Both > of us have access to the Internet at work and I spent an afternoon > searching for information about APERT. During my search, I found Teeter's > Page and printed the information. I called Don Sears that very evening to > introduce myself. We had a great conversation and it was comforting to > know that I could share my experiences and feelings with someone who had > already been through what we were just beginning. After talking with Don, > Robin and I purchased a computer so that we could access the Internet at > home. Carmen's first surgery (on her head) is scheduled for July 21, 1998. > Obviously, we are very scared and concerned for the well being of our > precious little girl. > Reading all the stories has helped us to understand everything that we will > be experiencing. Don added us to the ListServer and we have been reading > all the various E-Mails. We are currently on the Internet at > <CARMENRAE@PRODIGY.NET>. We accessed the Internet via prodigy because it > was already loaded on our computer with 2 free months. We will probably be > changing to America On Line soon. We will let everyone know if our address > changes. We just wanted to let you all know that we are here and how much > we already appreciate each one of you. We look forward to hearing from > you. God bless each of you. > Mike & Robin Hill

Dear MIke & Robin, My name is Judy Amerman and I discovered this site just a couple of weeks ago. It is just wonderful and I have already made several new friends. My son is 7 yrs. old and we have been though alot as every one of us has. I think you will be surprised just how quickly these kids spring back from their surgeries. Looking back I will say that the cranial was the worst. I do not know if it was for Nick but it sure was formy husband and me. As for as I know, all the apert kids were a surprise to their parents. Just remember that you are not alone. And may God bless you and your family Judy Amerman Morris, Il ========================================================================= Date: Wed, 4 Mar 1998 01:15:20 -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: E-Mails Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

>I can't speak for >>everyone, I can only speak for my husband and myself, we look forward to >>every afternoon when we arrive from work to turn on our computer and >>read the e-mails recieved, it's our daily therapy, believe it or not it >>is. >

Rachel, thank you for saying this. I hope this doesn't offend anyone, that is not my intent. I just wanted to put my .02 cents in too.

I know I am probably one of the quilty ones who uses this list maybe a bit more than I should, but for me this has been like a form of therapy too. I know going through so many messages can be tough for some people so I am trying to curb my responses lately. Before I had these wonderful support groups, I had noone near us who even know anything about Crouzons/Aperts (my daughter has Crouzons). My husband bless his heart, burried himself in work (he is better now) when our daughter was diagnosed with a syndrome. He has a very demanding job. I basically was the caregiver who followed her medical care and needs. I also tried to go back to work. The nearest source of info was 2 hours away, and her Dr's there (except for 1) were not much help. Locally - I was only given a 2 page excerpt out of a 70's medical textbook which was pretty scarey. I also did some of my own research to find a bit more "textbook info" as much as possible. I knew that degree would come in handy. :-) When her first cranial advancement (at 6 months) was not successful, and they said they wanted to "redo" it. I just about lost it.

Anyways, shortly after, I discovered and joined these listservers. I wish I had discovered them earlier. They have really helped in many ways. Not only for the tremendous amount of information, support, and reassureance from the many people who have been there, but also emotionaly from just the everyday social interaction about various topics on the list. It feels good to find a group of people who all have been though similar experiences and can relate. This is something that text from any source cannot replace.

I am trying to reply to any really private responses directly, but it is hard to reply to all of the short little conversations that I would like to. Typing one liners to private E mails seems silly to me. Now I just don't bother responding for fear of upsetting those who do not have the time to download or read all of the messages. I feel like a part of the group openness, and sharing support of the list is lost. Not sure why, but, this is something that has helped me tremendously in getting through the first year and a half.

Maybe it is just me, but I enjoy reading all of the quick short responses between all of the people - I don't know - it kind of has a friendly "aire" to it. I enjoy reading all of the congrats, or happy birthdays, or just well wishes. If I don't have the time, or the interest to read a particular message, it is really easy to delete it quickly.

Anyways, I just wanted to put my 02 cents in. I know it is hard to please everyone. I guess I am at the opposite end of the spectrum regarding this issue. For my situation, a little social interaction is important.

>I apologize for this long and draging e-mail, but it has been eating me >up all week.....Let those e-mails roll........

Rachel me too! This has been knawing at me too. Thanks for speaking up.

Hope all is well, Robyn Johnston

At 10:27 PM 3/3/98 -0500, you wrote: >Hi everyone, > >My husband and I are new in the listserver we've only been on for a few >weeks. At first we were very excited because we were getting up to 30 >e-mails a day and now it has trickled down to 5 or 6. Our daughter >Nicole is very young she is only 5 months old today. So we have only >just begun, we have yet to go through her first surgery, which we will >know tomorrow when it will be scheduled, we are anticipating some time >in April. We want/need as much information as we can possibly get. I >know a lot of you are tired of reading so many e-mails on a daily basis >and a lot of them really don't interest you at all because basically >you've been there done that. BUT, and that's a big But, there are some >of us beginners that don't mind reading all the e-mails because we can >learn so much from them. A question that A has for B might actually >interest C without A and B even knowing it. I'm sure that there are a >lot of people that feel the same way we do. So please don't stop >writing to each other and copying the listserver. For those of you that >are not interested in reading all the e-mails, just simply look at the >subject, you can gather from it what its mainly about, so instead of >reading it, just delete it. I know that it takes time to load all the >e-mails in, but isn't this what its all about. A bunch of people all >with the same interest, our beautiful children. I can't speak for >everyone, I can only speak for my husband and myself, we look forward to >every afternoon when we arrive from work to turn on our computer and >read the e-mails recieved, it's our daily therapy, believe it or not it >is. >I apologize for this long and draging e-mail, but it has been eating me >up all week.....Let those e-mails roll........ > >Raquel Miller > ========================================================================= Date: Wed, 4 Mar 1998 08:36:58 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jenngram <Jenngram@AOL.COM> Subject: Re: Mother passed away Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Christine,

Sorry to hear about your loss. You are in our thoughts and prayers, as are the Harmons....always

Jenn(Tampa/St. Pete) ========================================================================= Date: Wed, 4 Mar 1998 08:50:57 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Don Sears <dsears@SCRS.STATE.SC.US> Subject: Re: E-Mails MIME-Version: 1.0 Content-Type: text/plain

Don't forget the listserv archives on Teeter's Page - it is a gold mine of information and contains each and every posting since the list started - http://ww.apert.org/archive.htm --Don

> -----Original Message----- > From: Jack and Raquel [SMTP:jara1@BELLSOUTH.NET] > Sent: Tuesday, March 03, 1998 10:28 PM > To: APERT@LISTSERV.AOL.COM > Subject: E-Mails > [] --snip-- I apologize for this long and draging e-mail, but it has > been eating me > up all week.....Let those e-mails roll........ > > Raquel Miller ========================================================================= Date: Wed, 4 Mar 1998 09:09:49 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jenngram <Jenngram@AOL.COM> Subject: Re: Various Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

As far as therapy goes, we take Jordan to OT once a week. I kow a lot of people don't got to OT until after hands are done, but I discussed this w/ the developmental doctor as well as the PT and OT, and felt for Jordan it was best to stick w/ one therapist throughout..for contunity and the least amount of change for him. Since he will need the OT after his fingers are released, and the OT can do the physical part of therapy he needs now, this was how we went. Also, once a week seems to be enough w/ him. Plus, she give us exercises to do at home!! I love our OT, she stays current on new techniques and very receptive to my thoughts and ideas..and listens to what I have to say about his likes/dislikes and suggestions on how to get him to cooperate. I am glad we decided to do it this way..I hope to keep her FOREVER!!!!!!!

Jenn ========================================================================= Date: Wed, 4 Mar 1998 09:17:51 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: Jenngram <Jenngram@AOL.COM> Subject: Re: E-Mails Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

To keep it short, I wourld like to ditto Raquel and Robyn..Things have been pretty quiet..hesitant seems to come to my mind when responding is a thought. I do hope things pick up!! I've missed hearing from ya'll!!!! And no issue is irrelevant or unimportant. it was always nice to know that even if things were not so good around here, that good things w/ the kids were occuring around the country. And to hear the echos of "This too shall pass" has been a one-line lifesaver more than once!!!

Jenn (Tampa/St. Pete) ========================================================================= Date: Wed, 4 Mar 1998 10:19:52 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Don Sears <dsears@SCRS.STATE.SC.US> Subject: Thoughts on the evolution of our site MIME-Version: 1.0 Content-Type: text/plain; charset="iso-8859-1"

Hi to everyone - condolences Christine - and welcome to all new listserv subscribers. And just so you'll know, I have not heard from the Harmons since their last list posting. Please visit BJ's Page and say a prayer for him if you've not already done so.

I can't begin to tell you the pride Cathie and I feel to count all of you as our extended family. I can't remember what it was really like before we had such good friends, but it was in reality such a short time ago, Christmas 1995 to be exact. Teeter's Page was just Teeter and Courtney and then AJ, and I didn't even know what a listserver was! Now I've got a backlog of beautiful kids waiting for me to get their pages up, and the listserv has grown to about 125 subscribers, including parents, adults with Apert, therapists, surgeons, psychologists, teachers, and students.

What are the chances that 125 people will agree on anything? Not much! My philosophy for the management of this whole site is to nurture it and care for it but to try my best to let it evolve on its own. My official position is neutral - I do understand that each of us has different access methods and equipment and schedules and different needs, and I respect that. I've tried to make available options for those who have difficulty dealing with the number of messages posted in the form of daily digests and the listserv archives. Please email me privately if you want more information on this subject.

Under my present system of chaotic management, each of you is entitled to his or her own opinion and is not bound in any way to accept suggestions posed by others. Each of you is free to speak your mind on this listserv about anything, and it does not matter whether it is directly related to craniofacial issues or not. I trust that each and every one of you, being so empowered, will choose not to abuse it. Each of you is entitled to speak your opinion, read others' opinions, discuss options, form resolutions, refute the ideas of others. If you don't agree with something someone has said, speak up! Each one of your opinions is equally important. I trust all of you to work towards solutions as adults. All of you were smart enough to find this resource and stick with it through all of its growing pains, and I do not want to lose anyone.

Personally, I agree with those who are hungry enough for information about their loved one with Apert or other differences that ANYthing they may pick up from ANYwhere is important, and I'm fortunate enough not to have a problem with mass quantities of email. While the information may not seem important to you now, you may find that at some point down the road that some little tidbit of information is worth its weight in gold. You never know when you might be called to help someone else.

I hope to very soon replace the generic welcome letter with one personalized for our group, so that when you sign up for the list, you'll get some basic ground rules. Here's my proposed solution; I'd really like some feedback from everyone who cares to comment.

Rules:

1. When replying to a message on the listserv, quote only those parts which need to be restated. Assume everyone has already read the original message once. This will provide the most significant reduction in raw volume with no loss of information to anyone.

2. Avoid posting messages which are PURELY personal between yourself and the intended recipient. This type of mail should be directed to the individual's email address, not to everyone on the listserv. Example: <original> Jane, please call me when you get a chance. ---John <reply> Thank you, John, I will try to call tonight. ---Jane

3. Harassment of any subscriber for any reason will not be tolerated. Any instances of abuse should be reported immediately to the listowner at CatNDon@apert.org and please include the complete email messages from the abuser.

4. No unsolicited advertising (spam) is allowed.

5. Pass-ons of Internet virus threats, chain letters, etc. should first be sent to CatNDon@apert.org for verification. If appropriate these will be forwarded to the listserv.

6. This listserv will continue to be run with minimal intervention from it's owner. I expect each of you to treat each other with courtesy and kindness. We're fortunate to have this open communication and nothing should keep each and every subscriber from speaking their mind, within the context of the above rules.

Well, enough for now. Hoping to hear something from all of you soon, and hoping to hear from the Harmons.

-===>>Don ========================================================================= Date: Wed, 4 Mar 1998 10:43:53 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: MHTeach102 <MHTeach102@AOL.COM> Subject: An Update (great News) Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Sorry for the long delay in posting but I have some Great news.

BJ is doing much better and is even off the critical list. He had surgery last Monday to put in a new shunt as well as to reshape his frontal lobe. He has been improving dramatically since then. They took him off the ventalator last night so I came home to sleep.He is still rather weak and they are fighting the liver damage done because of all the antibiotica and pain killers. We are hoping to have him home again in a few weeks. The doctors don't know how much of the damage will be permanent but they are confident that he is out of the serious danger.

I need to get some work done so I will run, I just wanted everyone to know our great news.

Marjorie Harmon ========================================================================= Date: Wed, 4 Mar 1998 08:11:57 -0800 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Scott Pengelly <scottp@EUGENE.COM> Subject: Great, good news: Scott Comments: To: AOL User <MHTeach102@AOL.COM> Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

To Marjorie, David, BJ, Joshua, Jacob and Katie:

Congratulations on your wonderful news. So good to learn of your blessing.

All the best love, Scott ========================================================================= Date: Wed, 4 Mar 1998 11:58:02 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Yonstein <Yonstein@AOL.COM> Subject: Re: Thoughts on the evolution of our site Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Don:

I was very happy to read about e-mails and your ideas on the site. I for one love reading any and all mail. As I am still new to this with Emily being only 7 months old, I have printed out and kept in a file numerous e-mails that will help us in the future relating to things that we have yet to encounter.

It would be a shame if any information was not posted for fear of people's reactions to too much mail. What you have created here is definitely too valuable to lose any of us from. I know for me it is a way of keeping in touch with a part of my life that nobody else shares and understands, even though they try.

I think your ideas are great and the really personal things should be sent directly and not to the list. Otherwise, everything is for anyone interested.

Now I also have added my two cents to this issue.

Take Care,

Janine Krebs ========================================================================= Date: Wed, 4 Mar 1998 12:06:02 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Yonstein <Yonstein@AOL.COM> Subject: Re: An Update and other things Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Marjorie:

I was so happy to hear the great news. I have been thinking of you and BJ all week. It was worth waiting to hear that news. I will continue to pray that BJ improves and can come home to your family.

Christine:

I am so sorry for the loss of your mother. My thoughts and prayers are with you now at this difficult time.

Mike and Robin:

Welcome to the list. If you've been reading, you already know what a great place this is. My daughter Emily is 7 months old and has had her cranial surgery at 3 months and ear tubes put in at 5 months old. You may e-mail me directly for any information or as the surgery gets closer, let us know and we will be happy to give you any info you need that might help you. Congratulations on the birth of Carmen Rae. Also, my dad lives in GA, in Atlanta. Looking forward to meeting you on our next visit there.

Jack & Raquel:

My daughter Emily, (7 mo.) gets phys. therapy 2 times a week and an educational teacher comes once a week. She will be getting OT after her hand surgeries,, and speech after her cleft palate is repaired. We started out under our ins. co. and now we are going through the Early Intervention Program through the Dept. of Health. You might want to check those resources where you live. It's paid for by the County we live in. That's where our taxes go. When the children turn 3 years old it's picked up by the school district. Good luck.

Kerri:

Also, if I remember Devin is scheduled for surgery on the 5th. Hope all goes well.

Janine ========================================================================= Date: Wed, 4 Mar 1998 09:19:51 -0800 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Robyn Johnston <robyn@ORDATA.COM> Subject: Re: An Update (great News) Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

Marjorie, BJ is a TROOPER indeed! Way to go little guy!!! I really admire his determination and yours too. I am glad to hear things are looking up for you all, and that you have even managed to find time for some much needed rest. I will continue to pray it will improve for you all.

Hugs, Robyn Johnston

At 10:43 AM 3/4/98 EST, you wrote: >Sorry for the long delay in posting but I have some Great news. > >BJ is doing much better and is even off the critical list. He had surgery last >Monday to put in a new shunt as well as to reshape his frontal lobe. He has >been improving dramatically since then. They took him off the ventalator last >night so I came home to sleep.He is still rather weak and they are fighting >the liver damage done because of all the antibiotica and pain killers. We are >hoping to have him home again in a few weeks. The doctors don't know how much >of the damage will be permanent but they are confident that he is out of the >serious danger. > >I need to get some work done so I will run, I just wanted everyone to know our >great news. > >Marjorie Harmon > ========================================================================= Date: Wed, 4 Mar 1998 09:22:59 -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: Robyn Johnston <robyn@ORDATA.COM> Subject: Re: Thoughts on the evolution of our site Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

Don thanks for some clarification. This sounds good to me. :-) Robyn J. ========================================================================= Date: Wed, 4 Mar 1998 09:25:02 -0800 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Robyn Johnston <robyn@ORDATA.COM> Subject: Re: Mother passed away Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

Christine, I am sorry to hear the unfortunate news. I hope your mother is resting peacefully now. You are in our prayers. Hugs, Robyn Johnston ========================================================================= Date: Wed, 4 Mar 1998 09:53:43 -0800 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "Wittenburg, Mark" <Mark_Wittenburg@TEMPE.GOV> Subject: FW: Teeter's Page MIME-Version: 1.0 Content-Type: text/plain

> I do not understand why there is so much sensitivity to the volume of > mail issue. I devour every message that comes through this > network......I print the ones that are valuable to me and save them. > > NO ONE ever said that speech should be restricted here......but you DO > have the option to write to people privately. Use the listserver as > it is intended...to share information, to vent, to grieve, to learn. > I personally feel it is not necessary for every person to read my > messages of encouragement or congratulations or despair to other list > members, so I write to them privately. > > We have enough things we could be sensitive about, in the big picture, > this is small potatoes, isn't it? > > Jackie Lynn's mom....Kathy > Kathy Wittenburg @ 350-2962 > ========================================================================= Date: Wed, 4 Mar 1998 14:43:22 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Christopher Kilner <Christopher.Kilner@USPTO.GOV> Subject: OT & PT MIME-Version: 1.0 Content-Type: text/plain; charset="us-ascii" Content-Transfer-Encoding: 7bit

Sometimes I feel like the OT & PT people are recommending therapy without any goals or purpose.

After every evaluation our 3 yr old Ceci has ever had, they have said she is doing fine, might be a little behind, and suggest weekly or bi-weekly therapy. When we ask them what the therapy will do or how it will help her, they've always answered in general terms. If they can't give us any specific goals we decline therapy because, as they told us a few minutes earlier, Ceci is doing fine. She continues to be age appropriate without any therapy.

She has been dressing herself for over a year and has always figured out a way to do what she wants to accomplish (she uses her teeth to open her play-doh, her thumbs and pinkies to type on the computer, and hangs on monkey-bars with her wrists). She seems to be naturally drawn to toys and games requiring dexterity (stringing beads, puzzles, duplo/leggo blocks, drawing with crayons, etc...) and has stayed age appropriate with her gross motor skills (running, jumping, climbing) so therapy has always seemed redundant.

The surgeries and doctor's appointments have been enough of a burden on our family life, so we feel blessed that Ceci hasn't needed OT or PT. Any delays she has had can be easily attributed to her surgeries, but she has always caught up on her own.

Ceci will continue to have evaluations and if a specific deficiency is diagnosed, she will get therapy. In the meantime, we will continue to enjoy our "special needs" girl who doesn't seem to have any special needs yet.

Chris and Reggie Kilner, Alexandria VA ========================================================================= Date: Wed, 4 Mar 1998 14:54:35 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Don Sears <dsears@SCRS.STATE.SC.US> Subject: Re: OT & PT MIME-Version: 1.0 Content-Type: text/plain

Bravo Chris. I think we sometimes rely on these folks to be as passionate about our one child as we are, and of course they can't be. How refreshing, someone else who thinks for themselves! We should never be afraid to use our own good judgement. Remember, no one knows your child bette than you do!

----Don

> -----Original Message----- > From: Christopher Kilner [SMTP:Christopher.Kilner@USPTO.GOV] > Sent: Wednesday, March 04, 1998 2:43 PM > To: APERT@LISTSERV.AOL.COM > Subject: OT & PT > > Sometimes I feel like the OT & PT people are recommending therapy > without any goals or purpose. > [] << snip>> ========================================================================= Date: Wed, 4 Mar 1998 15:01:04 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jenngram <Jenngram@AOL.COM> Subject: Re: An Update (great News) Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Marjorie,

I am so pleased to hear the great news. MAny friends and family members who have visited BJs page call often regarding his status. What a joy it will be to pass on the great news. As always, our thoughs are with you and yours

Jenn(TAmpa/St. Pete) ========================================================================= Date: Wed, 4 Mar 1998 04:00:03 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Elizabeth de Silva <lizsilva@SRV1.TELCONET.NET> Subject: Re: An Update (great News) MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

WONDERFUL!!! I feel so happy for you. This new is the one I have been looking and praying for days. Keep up, remember we are with you!

All our love,

Elizabeth

MHTeach102 wrote:

> Sorry for the long delay in posting but I have some Great news. > > BJ is doing much better and is even off the critical list. He had > surgery last > Monday to put in a new shunt as well as to reshape his frontal lobe. > He has > been improving dramatically since then. They took him off the > ventalator last > night so I came home to sleep.He is still rather weak and they are > fighting > the liver damage done because of all the antibiotica and pain killers. > We are > hoping to have him home again in a few weeks. The doctors don't know > how much > of the damage will be permanent but they are confident that he is out > of the > serious danger. > > I need to get some work done so I will run, I just wanted everyone to > know our > great news. > > Marjorie Harmon ========================================================================= Date: Wed, 4 Mar 1998 15:58:52 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Mark Smith <dsprado@PENN.COM> Subject: Harmons great news` MIME-Version: 1.0 Content-Type: multipart/related; type="multipart/alternative"; boundary="----=_NextPart_000_004D_01BD4786.6D60EBA0"

This is a multi-part message in MIME format.

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I am so glad for all of you. Sometimes a lot of prayer can go a long = way. BJ...you are such a strong young man and a great fighter.

Some of you will like the addition of a little background to make your = reading email more pleasurable....some won't.

Just had a few minutes to read the email's and this was the best new's = anyone could have hoped, prayed, or wished for.

Our prayers are with you all.

Mark and Michele

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

<META content=3Dtext/html;charset=3Diso-8859-1 = http-equiv=3DContent-Type><BASE=20 href=3D"file://C:\Program Files\Common Files\Microsoft = Shared\Stationery\"> <STYLE> <!-- body { margin-left: 8em; font-family: "Times New Roman", "Arial"; font-weight: plain; font-size: 12pt; } --> </STYLE>

<META content=3D'"MSHTML 4.72.2106.6"' name=3DGENERATOR> </HEAD> <BODY background=3Dcid:004501bd47b0$561561e0$941816d0@default = bgColor=3D#cc99cc> <DIV><FONT color=3D#800000 size=3D4>I am so glad for all of you.&nbsp; = Sometimes a=20 lot of prayer can go a long way.&nbsp; BJ...you are such a strong young = man and=20 a great fighter.</FONT></DIV> <DIV><FONT color=3D#800000 size=3D4></FONT>&nbsp;</DIV> <DIV><FONT color=3D#800000 size=3D4>Some of you will like the addition = of a little=20 background to make your reading email more pleasurable....some=20 won't.</FONT></DIV> <DIV><FONT color=3D#800000 size=3D4></FONT>&nbsp;</DIV> <DIV><FONT color=3D#800000 size=3D4>Just had a few minutes to read the = email's and=20 this was the best new's anyone could have hoped, prayed, or wished=20 for.</FONT></DIV> <DIV><FONT color=3D#800000 size=3D4></FONT>&nbsp;</DIV> <DIV><FONT color=3D#800000 size=3D4>Our prayers are with you = all.</FONT></DIV> <DIV><FONT color=3D#800000 size=3D4></FONT>&nbsp;</DIV> <DIV><FONT color=3D#800000 size=3D4>Mark and = Michele</FONT></DIV></BODY></HTML>

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------=_NextPart_000_004D_01BD4786.6D60EBA0-- ========================================================================= Date: Wed, 4 Mar 1998 17:23:15 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: LUVS2WRTE <LUVS2WRTE@AOL.COM> Subject: Re: An Update (great News) Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

BJ has been in my thoughts a lot these past few days. I was wondering how he was doing. I am so extremely glad that he's doing better. A part of me can breath again.

-Andrea ========================================================================= Date: Wed, 4 Mar 1998 17:31:02 -0600 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: ize <ize@TACOMA.CEATLABS.OKSTATE.EDU> Subject: Re: E-Mails MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

Hello to all and a welcome to the new members!

First of all I want to thank you Don for your input about the e-mails. I am very glade to read all the e-mails, even those saying Happy Birthday and every thing. Like someone told before, reading those e-mails are a daily therapy. The past feel days I was just thinking to ask what was going on with you friends, because I was receiving about 4 or 5 e-mails per day and I was sooooo upset about that. I thought that I was missing all the wonderful friends that I met here on this blessed listserv. Like everybody else, I was sending e-mails privately but feeling guilt about the others that could have some new information or just curiosity. For those of you that are new here, we have twin sons, they are two years old. One of them was born with Apert, his name is Felipe. He had his craniofacial advancement at age of 4 months. Then he started having his hands surgeries. Before the age of two, Felipe got all 4 fingers and a thumb on both hands. He is a very smart and healthy boy. He has OT every two weeks, and he has speech therapist every week. Felipe started seeing his OT since he was three months old. At that time she was coming here to see Felipe twice a week and then there was no need to do so. She decided to came just once a week. As I told before, today Felipe is seeing her just once every two weeks. Some times it dependes on the child's needs and progress.

Dear Marjorie and Family,

I am soooooo HAPPY to know that BJ is doing well and you can get same rest. God bless your hearts.

Hey Joanne we missed you! What is happening?

God bless you all, The Ize Family from Oklahoma. ========================================================================= Date: Wed, 4 Mar 1998 18:59:57 -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: Jack and Raquel <jara1@BELLSOUTH.NET> Subject: To All MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

*First of all I want to say to the Harmon family that we are oh soooo happy that B.J. is doing so much better. Keep the faith and remember that for God nothing is impossible.

*I want to thank all of you that have given us advise on the OT/PT situation.

*I was also so pleased to see all the e-mails and to hear all the good news.

*Don, I agree 100% with with your proposed solution.

*I want to give all of you an update on our daughter Nicole. We visited today with Dr. Wolfe (plastic surgeon)and he together with Dr. Ragheb (neurosurgeon) scheduled her first cranial surgery for May 7th, she will be 7 months old by then. I get nervous just thinking about it and it is still 2 months away. I know this is just one of many, but I guess it just takes some time to get use to (or do you ever?). Any advise or suggestions that you could give us from your experiences will be sooo welcome. Talk to you all soon...

Jack & Raquel Miller ========================================================================= Date: Wed, 4 Mar 1998 19:55:20 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: TheMorenos <TheMorenos@AOL.COM> Subject: Re: Mother passed away Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Christine- My deepest sympathies to you and your family on your loss.

Sincerely, robin moreno wichita falls tx ========================================================================= Date: Thu, 5 Mar 1998 14:23:46 +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: OT & PT & Other things Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

Hi Chris and Reggie

>Sometimes I feel like the OT & PT people are recommending therapy >without any goals or purpose.

It sounds like we have similar attitudes to therapists - we have Amy down to the minimum now because of the huge number of interventions she had in the early days. One does reach overload eventually and start asking the questions "Is this person/procedure/activity necessary? How is it impacting on the 'normal' life of my child?"

With those questions in mind we have done away with all Amy's therapists except for the regular followups to ensure no deterioration has taken place ("purpose") - OT and Physio are the only ones currently visiting and they do that at the school. (Obviously she has her annual specialist appointments.)

HOWEVER! Because she is so healthy she hasn't been monitored as closely as maybe she should have, and we now learn she has glue ear and needs grommets (though the specialist doesn't think the GP would have picked it up anyway). To quote his report "Children with cranio-facial disorders are particularly prone to middle ear disease". I knew they could have trouble with their hearing but I didn't tie that in with glue ear, which in Amy's case is asymptomatic. The ENT surgeon also believes she needs speech therapy - and from his careful reaction it is obvious he believes she should have had it right through.

Guilt time arrives again!!!

I want Amy to live as normal a life as possible and I don't think she can do so if she is constantly being therapied or operated on or whatever. But I also have to accept that she IS different and does need help to live her normal life. So I need to maintain that balance, and I am never too old to learn.

Great moment yesterday! In the hot pool Amy was holding up her separate digits independently (though she did have a bit of trouble with 3), 1 2 and 4 were showing up quite clearly without the other hand having to hold down the unused digits. Either she is gaining more independent finger control or the hot water was helping.

And just to prove how small NZ is. At the Lollipops play place where I took Amy and her friends for her birthday (YES she is 7 yrs old now!) a woman I have never met before told me she had worked with another person with Apert Syndrome down country a few years ago. She recognised the similar facial structure! And there would be no more than 20 people in NZ with Apert Syndrome.

Bye Ann NZ ========================================================================= Date: Thu, 5 Mar 1998 14:23:48 +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: Books Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

This is what happens when you don't read your email properly.

Whoever it was that was providing the information on Dr Upton's book, would you mind sending the details to me please. We have copies of

*the "Clinics" papers, *Hope Charkins' book on "Children with Facial Difference" and *Sargent's 2 books on Craniofacial surgery (we got them in 1994 - does anyone know of any update since then?)

but not Dr Upton's works. Anything else we should have that we might have missed?

I file most emails under subject headings but for some reason I didn't keep anything on this publication.

Many thanks Ann NZ ========================================================================= Date: Wed, 4 Mar 1998 22:58:27 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Thornq <Thornq@AOL.COM> Subject: Re: Various Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Jack and Raquel,

Andrew has been enrolled in Early Intervention since he was 4 weeks old. He has both a Physical Therapist and and Occupational Therapist. We did not start his OT until after his first hand surgery because she was a specialist in hands. PT and OT tend to overlap eachother when it comes to the upper body, but PT is really the only one of the two that deals with lower extremities. I see both PT and OT once a week and have never seen either one more than that. Our PT told me this week that once Andrew starts walking, she will start to come once every other week. Your OT and PT should be an asset.

Good luck and I hope you get your questions answered.

Lynn Thornquist (Holliston, MA) ========================================================================= Date: Wed, 4 Mar 1998 23:07:10 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: MHTeach102 <MHTeach102@AOL.COM> Subject: OT and PT Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

BJ saw his first OT and PT at 6 weeks, he has seen them once a week ever since. He also got OT and PT through the school while he was in school but only 1 every other week.

Now we will end up doing some combination of OT/PT 4-6 times a day is what we are guessing, but we are still weeks away from having to worry about that. He is continuing to improve and was moved from the Critical Care Unit to the regular ICU today and hopefully we will be on the floor in a week or so.

Marj ========================================================================= Date: Wed, 4 Mar 1998 21:23:34 -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: To All Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

First of all, I want to apologize Raquel for misspelling your name in an earlier post. I am so embarrassed! :-) It was late last night as I was typing and just read it incorrectly.

Second of all, the people on this list are a wonderful resources for preparing for surgery. I am sure you will receive tons of excellent suggestions. It is never easy as you predicted, but just knowing you have support here definately helps! Good luck in getting ready for Nicole's surgery.

Robyn Johnston, Eugene, OR

At 06:59 PM 3/4/98 -0500, you wrote: >*First of all I want to say to the Harmon family that we are oh soooo >happy that B.J. is doing so much better. Keep the faith and remember >that for God nothing is impossible. > >*I want to thank all of you that have given us advise on the OT/PT >situation. > >*I was also so pleased to see all the e-mails and to hear all the good >news. > >*Don, I agree 100% with with your proposed solution. > >*I want to give all of you an update on our daughter Nicole. We visited >today with Dr. Wolfe (plastic surgeon)and he together with Dr. Ragheb >(neurosurgeon) scheduled her first cranial surgery for May 7th, she will >be 7 months old by then. I get nervous just thinking about it and it is >still 2 months away. I know this is just one of many, but I guess it >just takes some time to get use to (or do you ever?). Any advise or >suggestions that you could give us from your experiences will be sooo >welcome. Talk to you all soon... > >Jack & Raquel Miller > ========================================================================= Date: Thu, 5 Mar 1998 08:50:09 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jim and Kelly Younkin <JimandKelly@YOUNKIN.COM> Subject: Re: An Update (great News) MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit

To the Harmon family, it was wonderful to hear the AMAZING news!! You've been in our thoughts and prayers almost constantly. Take care! The Younkins ========================================================================= Date: Thu, 5 Mar 1998 08:54:23 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jenngram <Jenngram@AOL.COM> Subject: Re: Team meeting Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Morning to all. Well, Jordan and I are heading to our first craniofacial team meeting today, and I am a bit leary of the whole thing. I don't get along w/ the nurse all that well..she thinks I am a young clueless mom..I'm not that young..although I do still get carded whrn I buy a beer at the grocery store..evenhappened when I was 8 mos. pregnant and doing some shopping for a party we were having..if you can imagine that!!!! Oh, and I hardly doubt I am clueless.

Anyway, the thought of spending all afternoon w/ this woman is less than appealing. If truth be known, she is the clueless one..can't figure out insurance procedures.or ever find the paperwork on Jordan. Plus..she never shuts up so I can explain things to her..imagine thatt..ME not being ale to get a word in edgewise!!!! My husband says this is IMPOSSIBLE!!!

I imagine many of you have done this already and was curious t the point of it..esp. w/ Jordan just 2 weeks from surgery, and 3 days post-op doctor visits???? Which by the way the doctors say he looks fabulous..and is quite handsome..of course I knew that already!! Beside the zipper on his head (his scar..we call him our little zipper-head..although I think he could go on the Reach tootbrush commercial for the guy w/ a flip-top head...hahahaha..at least we still have our humor) you can't even tell!!

So. any info. anyone has on these meetings and what they are suppose to accomplish would be greatly appreciated. Thanks in advance!!!

OH, JOrdan started his mmmmm sounds this week..maybe a mama will not be too far away..he does have the gift for gab..got it from his mom!!!

Have a good day!!!!! Jenn (Tampa/St. Pete) ========================================================================= Date: Wed, 4 Mar 1998 21:40:46 -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: Elizabeth de Silva <lizsilva@SRV1.TELCONET.NET> Subject: Re: Mother passed away MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

Christine, we are all so sorry. I know that maybe our words cannot do so much to comfort you. You are in our prayers and in our hearts.

Hugs and all our love,

Elizabeth ========================================================================= Date: Wed, 4 Mar 1998 21:49:29 -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: Elizabeth de Silva <lizsilva@SRV1.TELCONET.NET> Subject: Re: To All MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

Jack and Raquel wrote:

> *I want to give all of you an update on our daughter Nicole. We > visited > today with Dr. Wolfe (plastic surgeon)and he together with Dr. Ragheb > (neurosurgeon) scheduled her first cranial surgery for May 7th, she > will > be 7 months old by then. I get nervous just thinking about it and it > is > still 2 months away. I know this is just one of many, but I guess it > just takes some time to get use to (or do you ever?). Any advise or > suggestions that you could give us from your experiences will be sooo > welcome. Talk to you all soon... > > Jack & Raquel Miller

Dear Jack and Raquel, my Albita had her first hand surgery when she was one year old. She will probably will have her second surgery by the end of March. It doesn't matter what type of surgery your children will going to have, it is always a stressing thing (at least for me). What I am doing is trying to keep Alba healthy... and wait. Our children are very strong and I am sure Nicole will do just fine. One way to keep myself in good mental shape is sharing with all our list friends our feelings and thoughts (I think it is easier when you share a problem or concern with your friends).

Hugs,

Elizabeth ========================================================================= Date: Thu, 5 Mar 1998 19:12:37 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: GSieb91515 <GSieb91515@AOL.COM> Subject: Re: Thoughts on the evolution of our site Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Ditto! I had to stew for awhile on this because I immediately was very disturbed and wasn't sure how to react. I feel very strongly about this extended family and know how much it has helped me, whether it's a "way to go" or "happy birthday" or whatever. Our children are our common bond and I know everyone on this listserv over the past 15 months has helped me accept our new life with great optimism. I don't know how we would have made it through those first really tough months without all of you. As mentioned before, I too look forward to reading our emails and hearing how everyone is doing. It's keeps me going in the right direction (with a positive outlook). Let's continue to support each other! However, I do agree that the one on one personal messages be sent directly. That's my 2 pennies worth.

Brenda ========================================================================= Date: Thu, 5 Mar 1998 19:49:40 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: GSieb91515 <GSieb91515@AOL.COM> Subject: Re: An Update (great News) Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Marjorie,

What great news. Miracles really do happen and my faith just keeps getting stronger every day. BJ is simply incredible.

Brenda ========================================================================= Date: Thu, 5 Mar 1998 20:26:14 -0000 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: ROBIN L HILL <CARMENRAE@PRODIGY.NET> Subject: Thanks for the welcome! MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit

Hi everyone! Mike and I wanted to thank all of you who welcomed us and let you know how much we appreciate all of you already! We don't know what we would do without this support outlet! Of course we are very scared about the upcoming surgeries and the well being of our precious little girl. It sure helps to hear about your success stories and what to expect as the next couple of years unfold. Carmen's first surgery (cranial) is scheduled for July 21; she will be 6 months old. She has a CT scan March 11 just to make sure there is not a need to do the surgery sooner. We would sure appreciate any information you can give us to help prepare us (we realize we won't ever really be prepared, but it helps to know what to expect).

Until then, we will continue to enjoy our precious little girl; aka booger butt, scooter pooter, pumpkin butt, sweetie pie, miss priss, etc.

I have decided to quit my job and stay home with Carmen full time. As I read about the upcoming surgeries and details such as cleaning and re-bandaging hands, etc. I decided there was no way I could leave this to a caregiver other than MOM. Even though I know this is the best decision I could have made for Carmen, I am struggling a little with my decision. I have always worked, I love my job, the people, etc. Did any of you struggle with this? I would appreciate any stories you may have about the decision to return to work or not.

Anyway, I guess I have gone on long enough for now. Thanks again and God Bless all of you; you are truly blessings!

Robin Hill ========================================================================= Date: Thu, 5 Mar 1998 20:12:56 -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: devin's surgery/books/BJ MIME-version: 1.0 Content-type: text/plain; charset="us-ascii"

Hello all, Devin had his surgery today and was done around 2:30pm. They put eartubes in and did a total vault reconstruction and brow advancement. It was a shock for Kerri to see him when they were wheeling him into PICU. She is glad it is over though! She is a tough mom. I cannot imagine doing this without someone there to help. She is in another state and all alone. We were with her all day today, and she will have another apert mother there to talk to. Her son is in PICU also.

Howard & Ann, Dr. Sargent had an updated book in 1997. If you do not have it you could call The Craniofacial Foundation and see if they have any left.

God Bless BJ, He is about the most amazing kid I have heard of. He has nothing on Hercules!

Denise Graham ========================================================================= Date: Thu, 5 Mar 1998 21:21:03 +0000 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "J. G. Lindamood" <chanan8@JUNO.COM>

Hello!

I am glad to hear I am not the only one who has sensed a slow down in communications on this list. For a while there I thought my server was out. I certainly hope people aren't "talking" because of the "overwhelming issue" some felt. I for one look forward to each and every message! This is a safe place to talk, jabber on and let our feelings out! If we all communicated to each other personally, what purpose would the list serve? No pun intended!

Joanne, in Ohio

_____________________________________________________________________ You don't need to buy Internet access to use free Internet e-mail. Get completely free e-mail from Juno at http://www.juno.com Or call Juno at (800) 654-JUNO [654-5866] ========================================================================= Date: Thu, 5 Mar 1998 22:32:47 +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 Ize Family, and all!

Here I am! It has been necessary for me to take a break of sorts. I am struggling with some personal issues and have not had a lot of energy to share. Forgive me for being selfish. I have been "listening" to everyone and cannot describe the surge of joy I felt when I read of BJ's improvement! What a trooper!

I wrote the following message to a friend, but now believe it's time to share it with you all. Please forgive me for the selfish thoughts. I hope this helps you understand where I am at this point.

My parents did very little to find the appropiate support ( from within themselves or from outside resources) for me as a child with a birth defect. I have forgiven them, to a point, for not seeking to find others with Apert's because I now know there probably weren't that many to find. So, I grew up ignoring my birth defect and everything that comes with it. I ignored the feelings, the questions, the "what-if's". I hid my need to do something differently than the rest of the world because I was embarassed. I would never eat a Big Mac in front of someone else because I would have to cut it in half to prevent wearing most of it. Now, years into this life, I am trying to face all of these emotions, feelings of rejection, pain, doubt and trying to find balance in the happy parts of my life. This is not a new road for me, I have been down this way many times before and something always stops me from continuing and leaving all of this behind.

Being connected to this list for six months is a new record for me. As an adult, when I have tried to contact people with birth defects, and even finding some with Apert's, I have closed off when the contact got too emotional. I wasn't willing to face that hard stuff. I had been brought up to ignore it and was willing to continue. Also, for the most part, as it is now, I have been the elder one in the relationship and I was mainly speaking to parents of children with the birth defect. I have not been able to find the reverse, the support for me.

Please don't get me wrong, I am thrilled to no end to be able to use my writing and my life to help someone! Just knowing I am doing that has been my source of energy! Right now I am at that point where I want to close off and forget again that I have a birth defect. I want to run and hide somewhere. My immediate friends can't help me, my parents are still under the impression that I don't have any problems, my brothers, well, they have their own lives. I am the only own who can help myself and I am clueless of what to do.

Joanne, in Ohio

_____________________________________________________________________ You don't need to buy Internet access to use free Internet e-mail. Get completely free e-mail from Juno at http://www.juno.com Or call Juno at (800) 654-JUNO [654-5866] ========================================================================= Date: Thu, 5 Mar 1998 22:27:11 -0600 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Judy Amerman <jamerman@UTI.COM> MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit

---------- > From: J. G. Lindamood <chanan8@JUNO.COM> > To: APERT@LISTSERV.AOL.COM > Subject: > Date: Thursday, March 05, 1998 4:32 PM > > Hello Ize Family, and all! > > Here I am! It has been necessary for me to take a break of sorts. I am > struggling with some personal issues and have not had a lot of energy to > share. Forgive me for being selfish. I have been "listening" to > everyone and cannot describe the surge of joy I felt when I read of BJ's > improvement! What a trooper! > > I wrote the following message to a friend, but now believe it's time to > share it with you all. Please forgive me for the selfish thoughts. I > hope this helps you understand where I am at this point. > > My parents did very little to find the appropiate support ( from within > themselves or from outside resources) for me as a child with a birth > defect. I have forgiven them, to a point, for not seeking to find others > with Apert's because I now know there probably weren't that many to find. > So, I grew up ignoring my birth defect and everything that comes with > it. I ignored the feelings, the questions, the "what-if's". I hid my > need to do something differently than the rest of the world because I was > embarassed. I would never eat a Big Mac in front of someone else because > I would have to cut it in half to prevent wearing most of it. Now, years > into this life, I am trying to face all of these emotions, feelings of > rejection, pain, doubt and trying to find balance in the happy parts of > my life. This is not a new road for me, I have been down this way many > times before and something always stops me from continuing and leaving > all of this behind. > > Being connected to this list for six months is a new record for me. As > an adult, when I have tried to contact people with birth defects, and > even finding some with Apert's, I have closed off when the contact got > too emotional. I wasn't willing to face that hard stuff. I had been > brought up to ignore it and was willing to continue. Also, for the most > part, as it is now, I have been the elder one in the relationship and I > was mainly speaking to parents of children with the birth defect. I have > not been able to find the reverse, the support for me. > > Please don't get me wrong, I am thrilled to no end to be able to use my > writing and my life to help someone! Just knowing I am doing that has > been my source of energy! Right now I am at that point where I want to > close off and forget again that I have a birth defect. I want to run and > hide somewhere. My immediate friends can't help me, my parents are still > under the impression that I don't have any problems, my brothers, well, > they have their own lives. I am the only own who can help myself and I > am clueless of what to do. > > Joanne, in Ohio > > _____________________________________________________________________ > You don't need to buy Internet access to use free Internet e-mail. > Get completely free e-mail from Juno at http://www.juno.com > Or call Juno at (800) 654-JUNO [654-5866]

Joanne, I am Nick Amerman's mother. He is a 7 year old apert. I get the impression that you are very depressed tonight. Just remember that we all have defects. Some are just more noticeable than others I met an apert syndrome male about 7 yrs ago. He is probably 25 or 26 now. I Have been trying to track down his parents to let them know about this web site, but they have moved and I am having a hard time tracking them down. Where in Ohio are you? I have a sister that works in Toledo and my hometown is Monroe, Mi, which is 23 miles north of Toledo. When my son was born I was scared to death of the future. I'm sure your parents were scared too. Some people just have a hard time expressing themselves sometimes. Many times we are judged by face value and I'm sure that you at times have just been crushed by ignorant people. Butsome of the ugliest people i have ever met were beautiful on the outside and just awful on the inside. Hang in there and try to cheer up because you are probably one beautiful lady. Judy Amerman ========================================================================= Date: Thu, 5 Mar 1998 21:33:42 -0800 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Lark Jarvis <lark@INVOLVED.COM> In-Reply-To: <19980305.223252.3054.0.chanan8@juno.com> Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

Hi Joanne,

I'm in a hurry (off to work vampire shift . . . :~p ), or I'd write more . . . I have a bilateral cleft lip/palate, BTW, and only "lurk" on the Apert list (because adults are few and far between on all the lists).

But, your post really touched a chord for me--the things you write are VERY common feelings for adults of "past eras" who have craniofacial anomalies. Nobody's fault, really, that the resources weren't in place when we were growing up, but it does leave us with a lot of issues that it can be hard to find a place to work on . . . . Our issues are not the same as parents' issues, even though we can really help each other on the same lists. For adults and parents both, it really is a *process*.

I don't think you're "selfish" at all, and I don't really think you necessarily sound depressed--just realistic and honest. What you describe about "wanting to just forget that you have a craniofacial anomaly--I think that's very common, too. I know it is for me. I go through phases where I don't want to have ANYTHING to do with anything cleft-related--I feel very strongly that I don't *necessarily* owe anybody anything, and frankly, I would like to just get on with my life (that I went through all the surgeries, ostensibly, so that I could have!! :). OTOH, knowing other adults with craniofacial anomalies has really enriched my life and really given me a place to talk about the pain. The contact with parents really has, too, but in a different way (even though at first, I really resented that MY specific needs as an adult were rarely addressed). I'm VERY grateful for all those people's presence in my life.

I do plan to stay involved with craniofacial issues, but these days, when I connect with someone, I'm really conscious of trying to avoid connecting solely around the "big common wound," if that makes any sense. Growing up knowing NOONE with a cleft, I had a tendency at first to connect to other adults with clefts really strongly, in ways that were really more based on pain than on common interests/personality fit, if that makes any sense. I'm just glad that there's an ever-growing pool of adults to choose from! The more we connect that way, it's been my experience (from the people that I've met through lists like these), the easier it is to move on . . . (My friends from the CT list, BTW, all seem to be struggling with the same crummy mid-twenties, early-30's issues--not necessarily cleft-related . . . :~p

There is a real tension there, still, between knowing I can't deny all that happened, but just wanting it to be finished, finally . . .

I know that the issues may be slightly different, depending on the particular anomaly, but I did want you to know that what you're feeling sounds really familiar.

I also wanted to let you know that there is a special adults section of the Wide Smiles webpage that you're welcome to join in on, too. Pretty soon, there will be an adults-specific list, which will be pretty exciting. (Technical details are up in the air right now). It will be mainly cleft-related, but you are certainly very welcome! Hopefully, eventually, the resources for adults really will be in place so that we can all figure out exactly how we want to "move on"--not like we're in denial that it ever happened, but figuring out whatever works, however we want to choose to remember/frame the whole weird experience in adulthood (and before anybody attacks me for saying it's a "weird" experience, please just remember the statistics--and that despite what I really used to believe/feel growing up, NOT everybody goes through it or any thing even remotely similar . . . Maybe "unusual" is a better word for the whole thing--but you get the picture . . . Something that not everybody goes through on their way to adulthood . . . Oops--gotta go--thanks again for your post, Lark ========================================================================= Date: Thu, 5 Mar 1998 22:05:18 -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: Robyn Johnston <robyn@ORDATA.COM> Subject: To Robin - work Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

>I have decided to quit my job and stay home with Carmen full time. As I >read about the upcoming surgeries and details such as cleaning and >re-bandaging hands, etc. I decided there was no way I could leave this to >a caregiver other than MOM. Even though I know this is the best decision I >could have made for Carmen, I am struggling a little with my decision. I >have always worked, I love my job, the people, etc. Did any of you >struggle with this? I would appreciate any stories you may have about the >decision to return to work or not.

Robin - in my opinion this is a wise choice - if you are able. I tried to go back to work when Brenna was 4 months old. I just kept taking more and more of my medical leave though until I had used about 7 months worth. I was lucky that I have worked for the government for almost 14 years and I had never used more than a few days per year in sick leave. Anyways, It was not a good situation for anyone. Me, Brenna or my boss. I could not be as available to work because Brenna had 4 surgeries within a year, my boss couldn't rely on me as an employee because I was gone so much, and Brenna suffered because our childcare situation was less than ideal. Anyways, I am now taking a leave without pay for 6 months to see if my husband and I can afford for me to stay at home while our children are young. Since I have been at home, Brenna's development has really improved. I agree with you that Mom or dad can give their own child the best care in most situations. It is so nice now to be home with her rather than worrying all day about how she is doing. Anyways, enough ramblings for now. I just think that these kiddo's need the most care in their first y