========================================================================= Date: Sun, 14 Jun 1998 18:56:04 -0400 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Colleen Jones <coljones@PTDPROLOG.NET> Subject: HAND SOAKS MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit
When Jacob had his hands done, we soaked his hands in peroxide water everyday for about two weeks. This also helped loosen dead skin and made getting bandages off a little easier. Of course he loved putting his hand in the bowl and made a mess. He didn't seem to mind moving his fingers when they were separated. As a matter of fact, the first time the bandage was removed on the second hand, he wiggled the pinkie and tried to move the pointer too. Hope this helps. Colleen and gang ========================================================================= Date: Mon, 15 Jun 1998 04:52:13 -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: numbing patches MIME-version: 1.0 Content-type: text/plain; charset="us-ascii"
I remember some talking about the numbing patches for getting blood drawn. I can't remember the name. What is the name and how can I get them. I have a great doctor if I need to get some from him or the hospital. Can I get a prescription for it? Thanks in advance for the help!
Denise Graham ========================================================================= Date: Mon, 15 Jun 1998 06:37:53 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Bob Horning <Bob.Horning@CORP.HONEYWELL.COM> Subject: Re: Birthday List and TV programmes
>If you think Barney is bad wait until you get Teletubbies!!!!!!!
>Cheers >Ann >NZ
We get Teletubbies here in Minnesota. Krista wanted to watch it while she was in the hospital recuperating from surgery a couple weeks ago. It was so awful I almost had to be hospitalized myself. I can almost stomach Barney, but this was too much.
Jenn, my advice is to turn off the TV and take Jordan to a monster truck rally to flush his system out before he gets too hooked. :-)
Bob Horning ========================================================================= Date: Mon, 15 Jun 1998 08:56:31 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jennifer Graham <Jenngram@AOL.COM> Subject: Re: HANDS Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Thanks so much for all hte advice about recooping from hand surgery. it seems that I may have expected Jordan to just start picking things up right away. A little common sense on my end may have eased the worries.....His hands are healed and ...imagine this..hes using his new fingers now!!!! I guess it was raw and hurt..hmmmm??? SO...I guess you live and learn. Hes doing well..and despite the frustration of trying to get on w/ things like teaching him to eat from a totally upright position and feeding himself..sorta...hes doing well. Me on the other hand...am frazzled at the difficulty (who would of ever thought this was so hard) and the mess...since we were instructed to let him play in his food to get use to textures...he has no problem w/ that!!!! Like all lettle ones...he LOVES making a mess.
Thanks again, and hopefully I will have enough sense for the next surgery to know what to expect!!!
Hope everyone had a nice weekend...Good luck...AGAIN...to Nicole...We'll be thinking of ya'll on the 18th and the days preceding that she stays well!!!!
Jenn(Tampa/St. Pete) ========================================================================= Date: Mon, 15 Jun 1998 08:59:57 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jennifer Graham <Jenngram@AOL.COM> Subject: Re: Birthday List and TV programmes Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
HAHHAHA...Thanks Bob....We have seen teletubbies here as well..luckly I still ahve control over the remote..not for long though as this seems to be then one item that Jordan will crawl all the way to the bedrooms to find. Hes a typical male.alright..my husband says its a male chromosone thing..HA!!!!
Jenn ========================================================================= Date: Mon, 15 Jun 1998 08:48:27 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Bob Horning <Bob.Horning@CORP.HONEYWELL.COM> Subject: Re: Birthday List and TV programmes
>...luckly I still ahve control over the remote..not for long though as this > seems to be then one item that Jordan will crawl all the way to the > bedrooms to find. Hes a typical male.alright..my husband says its a > male chromosone thing..HA!!!!
>Jenn
When Andrew was little (he's now 4 - that's "big") we found an old remote that didn't work, and let him play with it as a toy. This wasn't a Fisher-Price toy, this was a honest-to-goodness remote. But even that wouldn't fool him. He would leave it on the floor and go after the real remote. It has to be a male chromosome thing - the girls never cared about it (they still don't).
Bob ========================================================================= Date: Mon, 15 Jun 1998 09:58:56 +0000 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Comments: Authenticated sender is <jgibson2@POP.erols.com> From: Judy Gibson <jgibson2@EROLS.COM> Subject: Re: numbing patches In-Reply-To: <v01550100b1aaaca8d522@[204.116.102.140]> MIME-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7BIT
> I remember some talking about the numbing patches for getting blood drawn. > I can't remember the name. What is the name and how can I get them. I > have a great doctor if I need to get some from him or the hospital. Can I > get a prescription for it? Thanks in advance for the help!
I don't know about patches(maybe something new, though), but there is a cream that is used for numbing prior to blood draws (and IV starts). It's called EMLA and you would need a prescription for it. It's put on 1 hr prior to the needlestick, with a bandage over it to hold it in place. You'd probably put it on shortly before leaving home -- and maybe on 2 sites, depending on how difficult blood draws are on your child.
Judy ========================================================================= Date: Mon, 15 Jun 1998 22:35:42 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Elizabeth de Silva <lizsilva@SRV1.TELCONET.NET> Subject: Re: Birthday List MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Alba Victoria's Birthday May 4/94
Sorry to hear Nicole's surgery has been postponed again, but just remember God knows what he does. I am sure it is convenient for Nicole to postpone it. Just keep us updated.
Elizabeth ========================================================================= Date: Mon, 15 Jun 1998 22:48:59 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Elizabeth de Silva <lizsilva@SRV1.TELCONET.NET> Subject: Re: CARMEN RAE'S SURGERY MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
We are so glad to her that Carmen Rae came okay from her surgery. Hope the recovering process will be an easy one. God bless her.
Elizabeth
ROBIN L HILL wrote:
> Hi everyone, > > It's Carmen Rae's dad (Mike). I don't do too much on the listserver > as > Robin handles that department in our household. She does keep updated > > daily on all the happenings with each and everyone of you. Robin used > > "Creative Memories" to design a spectacular book of all of Carmen > Rae's > friends. > > Anyway, Carmen Rae had her Cranial Vault Remodeling on Friday. She > came > through surgery with "flying colors." It has been less than 48 hours > and > the swelling is already decreasing, she can open her eyes and she is > eating > well. She even smiled at me this morning. > > Dr. Robert Wood of Emory University did a marvelous job. Her head > looks > really good. She has her bandages off and we were amaxed at the job > he > did. Dr. Wood uses the disolvable plastic plates in the remodeling > process. I did take pictures throughout and in the near future, we > hope to > get the info to Don Sears for a Web Page for Carmen. > > God Bless each and everyone of you. Your presence here on the > listserver > have been a blessing and source of strength for us. We hope to be > home on > Wednesday and we will update you then. > > Mike & Robin Hill (And Carmen Rae too!) ========================================================================= Date: Mon, 15 Jun 1998 13:42:47 -0700 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Chan <jchan7@PACBELL.NET> Subject: Re: Birthday list MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Good Day! Roxanne "Roxy" Chan DOB: 11-9-88 ========================================================================= Date: Mon, 15 Jun 1998 16:48:07 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: AOL User <MHTeach102@AOL.COM> Subject: Re: Birthday List Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Benjamin Harmon 3011 Cross Trail Rd San Antonio TX 78264
January 16, 1987 ========================================================================= Date: Mon, 15 Jun 1998 17:39:23 -0700 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Robin MacDonald <macdonal@GOLDEN.NET> Subject: articles MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Here are some interesting articles on the subject of teasing, self esteem ect.
When you get to the web page, click on Tips for Teens/Parents for the articles.
http:home.istar.ca/~integra/
Hope you enjoy...Robin MacDonald ========================================================================= Date: Mon, 15 Jun 1998 19:23:34 -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: Ize <ize@TACOMA.CEATLABS.OKSTATE.EDU> Subject: pictures. MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Hi everyone!
We have received some pictures and everybody looks great. We are looking forward to receive more... If there is someone that didin't receive Felipe's picture, please let me know. It has been more then three weeks that we've sent his picture. Hope that everybody got it on your mail box. Doe's anybody know if BJ is on the picture exchange, if so please could someone send me his address?
Thank you, The Ize's. ========================================================================= Date: Mon, 15 Jun 1998 19:24:25 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Ize <ize@TACOMA.CEATLABS.OKSTATE.EDU> Subject: Re: CARMEN RAE'S SURGERY MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
We are so happy for you!!! We wish Carmen Rae a speedy recovery. God bless this little heart. The Ize's.
ROBIN L HILL wrote: > > Hi everyone, > > It's Carmen Rae's dad (Mike). I don't do too much on the listserver as > Robin handles that department in our household. She does keep updated > daily on all the happenings with each and everyone of you. Robin used > "Creative Memories" to design a spectacular book of all of Carmen Rae's > friends. > > Anyway, Carmen Rae had her Cranial Vault Remodeling on Friday. She came > through surgery with "flying colors." It has been less than 48 hours and > the swelling is already decreasing, she can open her eyes and she is eating > well. She even smiled at me this morning. > > Dr. Robert Wood of Emory University did a marvelous job. Her head looks > really good. She has her bandages off and we were amaxed at the job he > did. Dr. Wood uses the disolvable plastic plates in the remodeling > process. I did take pictures throughout and in the near future, we hope to > get the info to Don Sears for a Web Page for Carmen. > > God Bless each and everyone of you. Your presence here on the listserver > have been a blessing and source of strength for us. We hope to be home on > Wednesday and we will update you then. > > Mike & Robin Hill (And Carmen Rae too!) ========================================================================= Date: Mon, 15 Jun 1998 21:28:53 -0400 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial 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: Birthday list MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Nicole Miller's date of birth October 3, 1997
Nicole Miller 16703 Redwood Way Weston, Fl. 33326 ========================================================================= Date: Tue, 16 Jun 1998 13:46:57 +1200 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Howard & Ann <howrdnan@IHUG.CO.NZ> Subject: Re: numbing patches Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
EMLA is available as a patch in NZ so it is sure to be available in that form in the US as well. I've used the cream on myself and it is GREAT but you have to put on heaps and in NZ it is not cheap.
Ann NZ ========================================================================= Date: Tue, 16 Jun 1998 13:46:55 +1200 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Howard & Ann <howrdnan@IHUG.CO.NZ> Subject: Re: HANDS Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
Hi Jennifer
>SO...I guess you live and learn. That is what this whole thing is about for us - learning that they do cope despite our worst fears. Amy is 7 and I am still learning that my worries usually come to nothing - she does her own thing in her own time, despite what the experts and therapists say she should be doing at any stage (though I do admit sometimes a little help doesn't go astray).
>Me on the other hand...am frazzled at the difficulty (who would of ever >thought this was so hard) and the mess...since we were instructed to let him >play in his food to get use to textures...he has no problem w/ that!!!! Like >all lettle ones...he LOVES making a mess.
You do realise you don't HAVE to let him play with his food??!! My mum was 46 when she had me and I was almost 40 when I had Amy - my acquired parenting skills include "one does not play with one's food", no liberated modern-day parenting here!! I figured Playcentre was the place where she got to do all that mucky stuff like playing with finger paints etc (culturally inappropriate to play with food in any shape or form, but we had special dispensation to make finger paints and playdough!), so I didn't HAVE to have it available at home. Nice clean play in the bath (good place to feed her spaghetti for tea) and playdough suited me just fine. Uncooked rice is also a good clean texture to play with as the pieces aren't small enough to damage that delicate new skin.
Relax if you can, like most things, this too will pass.
Cheers, Ann NZ On a lovely sunny winter's day in Auckland - still waiting for the cold weather, though the rain has certainly arrived. ========================================================================= Date: Tue, 16 Jun 1998 13:46:59 +1200 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Howard & Ann <howrdnan@IHUG.CO.NZ> Subject: Re: pictures. Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
Another three lovely pictures in the mail today - and no bills or anyone asking me to do anything for them!! I love it!!
It is a while since I thanked the senders so since my last list, thanks to:
Quentin, Roxy, Nick, Jacob, Morgan, Tamara, Nate, Colin, Zoey, Eva Jessie, Andrea, Courtney, Jonathan, Felipe and Rafael, Billy and Kaila, Dylan and Amy (from your letter it sounds as though you and our Amy are VERY much alike!!), Ashleigh, Sarah Caetlin, Martha Deanna (what a beautiful dress you have) and Kayla.
We are having our Gathering during the weekend of 11 and 12 July so I will have a folder with all the photos and letters available for the other families to enjoy. I intend copying the photos for my world map which is to go onto the wall, and have the letters and originals safely in the folder.
Our Gathering will be small by your standards as 5 families plan to be present, but as we only have 12 families in our Network we are pleased with the response.
I have four envelopes sitting and waiting for their photos to go out to the latest additions to our list. Hopefully they will be sent out this week.
Thanks to you all Ann NZ ========================================================================= Date: Mon, 15 Jun 1998 22:17:12 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Laurie Bailey <jkb@ELPASO.NET> Subject: Re: numbing patches MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit
Hey Denise, Laurie Bailey here. The cream is called EMLA. You do need a prescription for it.
---------- > From: Chad & Denise Graham <cgraham@INFOAVE.NET> > To: APERT@LISTSERV.AOL.COM > Subject: numbing patches > Date: Monday, June 15, 1998 5:52 AM > > I remember some talking about the numbing patches for getting blood drawn. > I can't remember the name. What is the name and how can I get them. I > have a great doctor if I need to get some from him or the hospital. Can I > get a prescription for it? Thanks in advance for the help! > > > > Denise Graham ========================================================================= Date: Mon, 15 Jun 1998 21:59:52 -0600 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Chad & Denise Graham <cgraham@INFOAVE.NET> Subject: ELMA PATCHES MIME-version: 1.0 Content-type: text/plain; charset="us-ascii"
Thanks for the advice on the Elma cream. I had my doctor write a prescription for it today and I was shocked that the little tube was $41. I will pay that for it, but I intend to make the state insurance pay for it. That is all they are good for. They don't help with any bills just some medications. I have learned to plead a good case on any basis. My doctor just lets me come in his office and do as I please. It is fun to do what I want and let my doctor sign it off. He doesn't have time or the patience to deal with the state, but after what they have put me through these past few months, I have made it my lifes goal to make them miserable!ha...ha... That means appealing every decision they make(which is always no with everyone in the state that needs anything) and then winning! They have denied surgeries when lives depended on it because of minor technicalities. Such as they didn't spell the name of the procedure right so they have to resend in the info and wait for their decision.
Sorry for rambling. You can tell what kind of day it has been for me! Hope everyone has a good night.
Denise Graham ========================================================================= Date: Mon, 15 Jun 1998 23:09:25 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "Allison's : GO USA, Inc" <gousa@KC.NET> Subject: Birthday list In-Reply-To: <3585CA55.4D72@bellsouth.net> Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
Shawn Allison. His date of birth is June 20, 1994
Shawn Allison 23803 E. 92nd Terrace Lee's Summit, Mo. 64064 ========================================================================= Date: Tue, 16 Jun 1998 14:29:31 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Lynn Thornquist <Thornq@AOL.COM> Subject: Re: CARMEN RAE'S SURGERY Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Mike & Robin,
Glad to hear that Carmen Rae's surgery went well, and I am wishing you a quick recovery back to normal everyday life. The change is amazing, I remember what it was like after Andrew's frontal advancement.
Please keep us all updated. Love to everyone.
Lynn Thornquist ========================================================================= Date: Tue, 16 Jun 1998 17:12:14 -0400 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Leanne Maclean <lmaclean@NETCOM.CA> Subject: Pictures/other MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii
Hi everyone,
Wanted to let you know that Amy's had surgery went well. It is different when they are old enough to know what to expect! The plastic surgeon that did her thumb feels that he got enough space now that she should be able to get a good grip on her bike. Her hand is in a cast/bandage for another week so it is a bit until we can have a look!
A second plastic surgeon also worked on her straightening the skin around the outside of her eyes. Now that the swelling is going down and they are no longer black and blue they look great.
I lost some recent messages that had new addresses for the picture exchange- if anyone could post the ones that have been added in the last three weeks I'd really appreciate it.
After Amy's cranio surgeries we used a mild dish detergent to get the oil left from the ointment out of her hair. It was recommended by the nursing staff as the only thing that did the trick in one wash...worked for Amy.
Hope everyone is having a great day.
Leanne ========================================================================= Date: Tue, 16 Jun 1998 18:13:22 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: AOL User <MHTeach102@AOL.COM> Subject: Re: ELMA PATCHES Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
hello everyone,
Long time no talk, I bet you thought we feel off the face of the world. Well I think we did but we have begun to find our way back. BJ is doing about the same making small improvements and having small set backs. He is now off the portable ventalator except for a few nights a month. He is still requiring O2 by mask though for the most part. He is taking food by his G-Tube and has been shunt infection free for about 8 weeks. He is slowly regaining the weight he lost and is occasionally showing improvement in his mental alertness.
As far as the ELMA patches we have been using them for the past 2-3 months when we do dressing changes on the central line, g-tube or chest tube, they seem to ease some of the discomfort.
I will run before this gets too long. I will write more soon. Marjorie Harmon ========================================================================= Date: Tue, 16 Jun 1998 18:23:38 -0400 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial 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: Carmen Rae is HOME!!!!! MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit
Well, after 4 nights in the hospital we are home. We (well mom) were a little reluctant to come home so soon, but it seems Carmen Rae is doing GREAT! She had very little swelling (only about 14 hours of not being able to open her eyes) and she is slowly getting back to her old self. She spent most of today smiling at all the nurses and playing in her hospital crib so I guess the doctors felt it was time to check out. We are praying for a continued speedy recovery and let me tell you, it feels GREAT to have this surgery behind us. Thanks for all your thoughts and prayers.
Good luck to those of you having surgeries soon. We didn't think we could do it, but WE DID!!!!!!! Now the real fun comes, trying to keep the icky ointment off EVERYTHING!!!!!!!!!!!
The Hills (Mike, Robin, and Carmen Rae (with a brand new forehead)) ========================================================================= Date: Tue, 16 Jun 1998 18:33:23 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jennifer Graham <Jenngram@AOL.COM> Subject: Re: ELMA PATCHES Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Glads all you Hills are home..and isn't it so nice to be done w/ this one. It seems years away when Jordan had his and its only been 4 mos!!!!!
Jenn(Tampa/St. Pete) ========================================================================= Date: Tue, 16 Jun 1998 22:01:10 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Janine Krebs <Yonstein@AOL.COM> Subject: Re: Carmen Rae is HOME!!!!! Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
CONGRATULATIONS!!!!
I know the feeling coming home from this major surgery. The first one was definitely the toughest for me, although they are all hard. Glad to hear Carmen Rae is doing so well.
CONGRATS also to Amy on her hand and eyes. Hoping that your recovery goes well, also.
Janine ========================================================================= Date: Tue, 16 Jun 1998 22:03:07 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Janine Krebs <Yonstein@AOL.COM> Subject: Re BJ Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Marjorie:
Great to hear from you. I am very happy to hear that BJ is still improving somewhat and that he is free from infection. I am hoping that the rest of the family is doing ok and that you and David are trying to hang in there.
Hope to hear from you again soon.
Janine ========================================================================= Date: Tue, 16 Jun 1998 22:28:58 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Lynn Thornquist <Thornq@AOL.COM> Subject: Re: Pictures/other Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Leanne,
Those addresses you missed were:
Allison Bledsoe 3812 Laurel lane Anderson, IN 46011
Steve and Stacy Bell 8122 New Cut Road Severn, MD 21144
Laura Pulido 392S. Woods Avenue Los Angeles, CA 90022
The Irvins 47 South Hempstead Road Westerville, OH 43081
Claudia Mastellone 1310 40th Avenue #A San Francisco, CA 94122 ========================================================================= Date: Tue, 16 Jun 1998 23:39:13 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Patricia Smith <Patbrat718@AOL.COM> Subject: Pictures are on the way. Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Late in the game, I know, but finally...pictures of Jasmyn are all stuffed in envelopes and ready to be mailed. You should be getting them shortly. You can all call me turtle.
patti ========================================================================= Date: Wed, 17 Jun 1998 00:29:38 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Patricia Smith <Patbrat718@AOL.COM> Subject: Re: APERT Digest - 15 Jun 1998 to 16 Jun 1998 (#1998-113) Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Yeah for Carmen Rae..and Mom & Dad. Its those hours in surgery that really test our strength....I bet you will see a lot more smile from her now too. Glad she's home.
Patti Smith ========================================================================= Date: Wed, 17 Jun 1998 07:54:35 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jennifer Graham <Jenngram@AOL.COM> Subject: Re: Amy Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Glad to hear Amy made it home....hope the recovery continues to go smoothly
Jenn(Tamap/St. Pete) ========================================================================= Date: Wed, 17 Jun 1998 09:58:23 -0400 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: ROBIN L HILL <CARMENRAE@PRODIGY.NET> Subject: Re: Nicole's Surgery MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit
We will be thinking of Nicole and praying for you (mom and dad) on Thursday. We can tell you that it is DEFINITELY a relief to get this one over with!!!!!!!! Hang in there, you will be amazed at what you can do! Also, don't be too shocked when you see her for the first time! The turben-like (spelling) head dressing they put on them really makes their head look bigger than it really is! We were amazed how good Carmen looked when that thing came off! Good luck! We'll keep you in our prayers.
The Hills (Mike, Robin, and Carmen Rae)
---------- > From: Jack and Raquel <jara1@BELLSOUTH.NET> > To: APERT@LISTSERV.AOL.COM > Subject: Nicole's Surgery > Date: Sunday, June 14, 1998 8:24 PM > > Hello everyone, > > Nicole's surgary has been rescheduled for Thursday, June 18th. We were > so happy to find out that the delay would only be for one week. We > can't wait until this first "biggie" surgery is behind us. Our doctors > bumped other less complicated surgery in order to minimize our wait > since her surgery has been cancelled twice. > > We will keep you all posted. > > Jack & Raquel Miller ========================================================================= Date: Wed, 17 Jun 1998 10:14:02 -0400 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial 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: Birthday list/Being Home MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit
This is a GREAT idea.
Carmen Rae's birthday is January 18, 1998
70 Woodmoor Newnan, Georgia 30263
Boy, does it feel great to sleep in your own bed or what?????? I think Carmen Rae agrees too! She went to bed at 9:30 p.m., woke up once about 2:30 a.m., took about 8 ounces of milk, and she is now still asleep at 10:00 a.m. Of course, Mom has been up in her room watching her sleep!
Hope everyone is having a good day.
Robin Hill ========================================================================= Date: Wed, 17 Jun 1998 08:23:18 -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: baconsmith <bluenose@TELUSPLANET.NET> Subject: surgeries and recoveries Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
Hello all. Have been following quietly here. I see Carmen Rae is home. I'm trying to imagine her with her new forehead. I bet it has made such a difference. Hope you are all resting and relaxing after that. It's a big deal, and you all need a bit of time to recover, doncha think?
Good to see Amy and Leanne back home from Toronto, too. Glad that all went well with you. I'm curious how the surgeon straightened the skin around Amy's eyes -- we are dealing with some eyelid work here and I'm trying to imagine how that is done. Hope Amy is able to get back on her bike really soon. And spend the whole summer riding it!
Nicole and Mom and Dad, I'll be crossing fingers and toes that her surgery can go ahead. What a lot of stress you've been under! Just a few more days and then you'll be on the flip side of it. Hang in there. Thinking of you -- she's such a cutie pie.
Hi Marjorie and BJ! Good to see your updates, too. I dedicated a day to BJ a while back when we took the kids walking at a big prairie grassland park. Everytime, I stopped to examine the grasses or shrubs, or admire the clouds in the sky or the view of the city, BJ popped into my head. It's my version of prayer -- more a contemplation, I suppose. Anyway, keep fighting the good fight, BJ.
I just got Kayla's pic in the mail and also Martha Deanne's. Thanks. My I have a beautiful photo album happening.
Update for EvaJessie: we were last on the roster for surgery a week ago -- had to wait all day. EvaJessie was a trooper tho. She hung in there with me. And made a speedy recovery too. We were discharge thursday and flew home that afternoon. Her cheek is still a bit bruised. Doc says her skin is really thin so we have to go slow with this tissue expansion. Had to re-fabricate the arm on her glasses so it goes over the port which makes her temple bulge out. But she's back at pre-school and doing well. Expansions begin week after next. Final surgery will be Sept 9.
Remember I said you never know when someone will come along who looks like her? Well, a family from OK wrote to Widesmiles where EvaJessie's picture is. They have a brand new baby boy with a similar cleft. They left their phone number so I called them and chatted for a bit. I'm going to put together a packet of resources for them to check out and mail it off.
Well, that's our news for now. Someone was keeping a surgery list -- anyone care to post an updated schedule? Pat and EvaJessie in Calgary email to: bluenose@telusplanet.net IM: onlypeach shake and shake the ketchup bottle. none will come and then a lot'll ... unknown ========================================================================= Date: Wed, 17 Jun 1998 10:28:21 -0700 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "Christine L. Clark" <apertnet@IX.NETCOM.COM> Organization: APERT SUPPORT & INFORMATION NETWORK Subject: Surgery update MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Hello to all,
I had my mastectomy on June 9th and came home on June 11th. My father came to help as well as Jack's sister and mother from Massachusetts. Jack's mother is staying until mid-July so that will be a great help. I have a hard time using my right arm from taking out the lymph nodes.
The pathology report was a bit worse than we expected. The breast itself had three separate tumors in it so it had already metastasized and the cancer had spread to 7 out of the 11 lymph nodes that were retrieved.
I am told I will be hit pretty hard with chemotherapy which may play havoc with my bone marrow and they may also want to do radiation in the armpit area. I see my oncologist for the first time on June 29th but will have a bone scan before then to see if it has spread.
In the meantime, I am going through the reconstruction so I look like a 41 year old on one side and a 12 year old on the other so I am having fun with jokes on that one. I am keeping my spirits up and my neighbors have all rallied around and we have our dinners set for the next week.
I will update you again later. Hope everyone is doing well.
Christine ========================================================================= Date: Wed, 17 Jun 1998 15:32:51 -0400 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Rich Hartley <rhartley@DZIS.COM> Subject: Advice about a Cleft Palate, pacifier Mime-Version: 1.0 Content-type: text/plain; charset=us-ascii
Hi, everyone, I have been skulking around the listserv since Andrews birth 4/30/98. We need information on pacifiers for kids with a cleft palate. Andrew will not take a regular "binky" and his thumbs are bent downwards. Does anyone know about customized pacifiers or have the cleft email address.? Regards, Rich & Karen in PA. ========================================================================= Date: Wed, 17 Jun 1998 14:50:15 -0700 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Richard Tait <rjrtait@MARS.ARK.COM> Subject: Subject: birthday list Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
Sorry that I have been away for a bit:
I think this birthday list is a great idea! Has anyone done a complete list that we could print(like the address list)?
I have been REALLY busy of late, and still am not caught up on the emails. I'll get there soon though.
I am still awaiting the okay to be able to send Julia's picture out to everyone (she is in foster care). We have really been enjoying every picture sent to us though-Thank you!!!
We do think of everyone: those in surgery and those not.
Julia would love receiving and giving birthday cards. She will be 2 yrs. old on Tues June 23rd! What a gift this would be!
You can reach us at:
Rene Tait 1909 Marten Ave. Comox, B.C. V9M 2J9 Canada ========================================================================= Date: Wed, 17 Jun 1998 18:05:07 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jennifer Graham <Jenngram@AOL.COM> Subject: Re: Advice about a Cleft Palate, pacifier Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
I think Johnson and Johnson make special bottles so perhaps they make pacifiers as well...the best place I can think to ask would be a NICU at a local childrens hospital.
www.widesmiles.org/index.html...is a site that may have some info or at least someone to ask.
Sorry I can't be of more help..perhaps you'll get some better feedback from others!!!
Hope Andrew is doing well!!!
Jenn(Tampa/St. Pete) ========================================================================= Date: Wed, 17 Jun 1998 15:55:13 -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: baconsmith <bluenose@TELUSPLANET.NET> Subject: Re: Advice about a Cleft Palate, pacifier Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
Hi Rich and karen: the cleft email address is
www.widesmiles.org
the online discussion list is cleft-talk
send a message to: listproc@mother.com no subject message: subscribe cleft-talk (your name)
be prepared for a lot of mail sometimes up to a hundred a day!
Good luck. Our EvaJessie was okay with her sus until she was about five months old and then she didn't want it anymore. But she just had an ordinary pacifier from the hospital nursery ward.
Pat and EvaJessie in Calgary
> >Hi, everyone, >I have been skulking around the listserv since Andrews >birth 4/30/98. We need information on pacifiers for kids >with a cleft palate. Andrew will not take a regular "binky" >and his thumbs are bent downwards. Does anyone know >about customized pacifiers or have the cleft email address.? >Regards, >Rich & Karen in PA. > > email to: bluenose@telusplanet.net IM: onlypeach shake and shake the ketchup bottle. none will come and then a lot'll ... unknown ========================================================================= Date: Wed, 17 Jun 1998 18:38:35 -0400 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: foster <foster@ICONTECH.COM> Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
Hi to everyone. Glad to hear that Carmen Rae is home and doing well. We are very happy to hear that BJ is coming along also.
Sorry to hear that Christines condition is worst that expected but you sound like you are strong and in control. i will continue to pray for you and your family.
I had my surgery on my throat yesterday and that also turned out to be a little more than we expected. I am having a hard time swollowing and have a great deal of pain. Of course it is nothing compared to what some of you guys are going through but for me it is hard. The biopsy will be completed by Friday and I have an appointment with my doctor on Monday.
Hope everyone is doing well and we will continue to pray for all of our children and for Christine and her family.
Billy's Birthday is March 4,1997 1335 Sanderson Ave Scranton,Pa 18509
If I remember right Nicole is having surgery tomorrow and We will be thinking of her and her family.Good luck to anyone else who is having any surgeries coming up.
There are still some pictures we haven't received yet and we are looking forward to getting them.
Karen Foster(PA) ========================================================================= Date: Wed, 17 Jun 1998 19:54:38 +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: Kathy Townsend <ktownsend@MAP.COM> Subject: Dianne MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Hi Folks,
I have been following your email with much interest for about two months. I am the legal guardian of 45 year old Dianne who was born with Aperts, abandoned by her family, institutionalized at birth, first diagnosed at age 11, and entered a community residence ten years ago when I became her guardian. I was able to retrieve her baby pictures from the state school and her early medical records. I feel like one of you, except that my hope for her future does not lie in the medical arena. Thirty five years of warehousing has taken its toll on her intellectually and certainly physically. However, they could not take her spirit away. She is a most delightful individual. She has made tremendous social strides since living in the community. She works in a sheltered workshop and with adaptive equipment, she is very productive. She shops, loves the LL Bean catalog, plans an annual vacation on a cruise ship or camping or Disneyworld, volunteers, goes to the ballet, and on and on.
Dianne is nonverbal. Her early records indicate that she knew a few words as a preschool age, but her only verbal sounds now are squeals of delight or grunts. Someone once thought she was deaf and taught her some signs. (She did come out of the state school with a hearing aid, but she isn't even hard of hearing.) She uses gestures, has had a picture book, and generally can get her point across to someone who knows her well. I do not see her daily and when I do, not only am I frustrated that I cannot fully communicate with her, but I know she is frustrated also and gives up.
I am exploring the use of a Zygo Macaw for Dianne with a speech pathologist. I am wondering if anyone out there has any thoughts on the Macaw or Dianne's communication skills. I surely would appreciate any comments or advice, which is the main focus of this rambling letter. You all have been so helpful and supportive to one another.
I will close by wishing Christine Clark and her family the very best for their future and relay a coincidental story. This site was recommended to me by one of Dianne's counselors. Once I started reading the mail on a daily basis, I realized that I really "met" Christine some eight or nine years ago. I was downtown Springfield, MA at this time of year when the Taste of Springfield happens. I bumped into an acquaintance who had shared some volunteer experiences with me at United Cerebral Palsy. She told me that she or her family was heading out to California because a sister in law had just had a baby with some problems. When she told me it was Aperts, I remember running off at the mouth about Dianne and also telling her that I had searched the Internet and there wasn't much out there about Aperts. She told me that her sister in law was the type who could move mountains. I don't know if she remembers this encounter, but I remember it vividly because I knew that this new baby would have all of the love and care and medical advocacy that would allow her to develop to her full potential. Funny how fate works.
Best wishes to all of you from Dianne in Fall River and Kathy Townsend in Springfield, MA ========================================================================= Date: Wed, 17 Jun 1998 18:08:36 -0700 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Scott Pengelly <scottp@EUGENE.COM> Subject: Good wishes, Cristine Comments: To: AOL User <MHTeach102@AOL.COM> Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
Hello Cristine:
Thanks so much for your email update. I am so glad to hear you are battling-- I can tell from your writing about your jokes about 41 and 12.
Please know that I am with you and that you remain in my thoughts and prayers.
All the best, Scott Eugene, Oregon ========================================================================= Date: Wed, 17 Jun 1998 20:05:25 -0600 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Chad & Denise Graham <cgraham@INFOAVE.NET> Subject: CHRISTINE MIME-version: 1.0 Content-type: text/plain; charset="us-ascii"
Christine,
I am glad you are home, and I am sorry to hear the news was'nt the best. We have had you in our thoughts and prayers. Enjoy having your family close. I remember in hard times some of the best times came from having family so close. Take care and God bless!
Denise Graham ========================================================================= Date: Wed, 17 Jun 1998 22:16:41 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial 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 Moreno <TheMorenos@AOL.COM> Subject: Re: Surgery update Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Dear Christine-
The reconstructed breasts are beautiful ( 41/12 comment). I have an aunt by marriage who is a breast cancer survivor and the envy of the entire female portion of the family. There are several support groups my aunt found quite helpful. I wish there was something that I could say or do to help....
You are in my thoughts and prayers.
Sincerely, robin moreno ========================================================================= Date: Wed, 17 Jun 1998 22:14:03 -0700 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: lisa mcgahan <wmcgahan@IX.NETCOM.COM> Subject: birthday list MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit
Morgan McGahan's birthday is 1/9/98. ========================================================================= Date: Wed, 17 Jun 1998 22:10:27 -0700 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: lisa mcgahan <wmcgahan@IX.NETCOM.COM> Subject: Re: Advice about a Cleft Palate, pacifier MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit
Karen-
I never found a pacifier for Morgan (also with a cleft and thumbs bent back). what we did was we used the hospital pacifier (which had one little hole on each side of the pacifier) and we got some soft elastic and basically made head geaar out of it so it would stay in her mouth. Our baby nurse (we had triplets) was horrified so she would just hold the pacifier in her mouth all day but I did not have enough hands for that when she was not around. And Morgan loved having it in her mouth all the time. Rest assured that their intense desire to suck subsides aftree about 5 months as well. Lisa
---------- > From: Rich Hartley <rhartley@DZIS.COM> > To: APERT@LISTSERV.AOL.COM > Subject: Advice about a Cleft Palate, pacifier > Date: Wednesday, June 17, 1998 12:32 PM > > Hi, everyone, > I have been skulking around the listserv since Andrews > birth 4/30/98. We need information on pacifiers for kids > with a cleft palate. Andrew will not take a regular "binky" > and his thumbs are bent downwards. Does anyone know > about customized pacifiers or have the cleft email address.? > Regards, > Rich & Karen in PA. ========================================================================= Date: Wed, 17 Jun 1998 22:05:06 -0700 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: lisa mcgahan <wmcgahan@IX.NETCOM.COM> Subject: Re: Carmen Rae is HOME!!!!! MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit
Robin, Mike and Carmen Rae-
That is great! God Bless! It seems our lives are now measured by small (and not so small) accomplishments. You'll have had another accomplishment. Congratulations! Friends - Lisa
---------- > From: ROBIN L HILL <CARMENRAE@PRODIGY.NET> > To: APERT@LISTSERV.AOL.COM > Subject: Carmen Rae is HOME!!!!! > Date: Tuesday, June 16, 1998 3:23 PM > > Well, after 4 nights in the hospital we are home. We (well mom) were a > little reluctant to come home so soon, but it seems Carmen Rae is doing > GREAT! She had very little swelling (only about 14 hours of not being able > to open her eyes) and she is slowly getting back to her old self. She > spent most of today smiling at all the nurses and playing in her hospital > crib so I guess the doctors felt it was time to check out. We are praying > for a continued speedy recovery and let me tell you, it feels GREAT to have > this surgery behind us. Thanks for all your thoughts and prayers. > > Good luck to those of you having surgeries soon. We didn't think we could > do it, but WE DID!!!!!!! Now the real fun comes, trying to keep the icky > ointment off EVERYTHING!!!!!!!!!!! > > The Hills (Mike, Robin, and Carmen Rae (with a brand new forehead)) ========================================================================= Date: Thu, 18 Jun 1998 14:38:32 +1200 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Howard & Ann <howrdnan@IHUG.CO.NZ> Subject: Re: Advice about a Cleft Palate, pacifier Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
>Rest >assured that their intense desire to suck subsides aftree about 5 months as >well.
Ahem! Amy finally gave up hers when she was around 4 years old!! Even now I sometimes find her deep asleep with her mouth going furiously as if she has a dummy in it!!
When I say she gave it up, I must admit there was a huge amount of encouragement from Mum and Dad. We would be starting to make progress and then back she would go in for more surgery, so we didn't like to remove it during those times.
Regards, Ann NZ ========================================================================= Date: Wed, 17 Jun 1998 23:40:22 +0000 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Comments: Authenticated sender is <jgibson2@POP.erols.com> From: Judy Gibson <jgibson2@EROLS.COM> Subject: Re: Advice about a Cleft Palate, pacifier In-Reply-To: <a9930e71.35883d94@aol.com> MIME-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7BIT
> I think Johnson and Johnson make special bottles so perhaps they make > pacifiers as well...the best place I can think to ask would be a NICU at a > local childrens hospital.
If your local childrens hospital has a special pacifier for cleft kids PLEASE let me know. We don't have any such thing in our NICU and the need does occasionally arise.
One thing to keep in mind, even kids with totally normal mouth structure can be very fussy about the style of pacifier they use. I'd suggest buying one of each style of pacifier (not necessarily each brand, that could get pretty expensive) and offering them several times each. I suspect that, as with feeding nipples, longer is probably better for kids with clefts. The non-orthodontic style may be your best bet. Another possibility, NUK makes pacifiers in several sizes. Other companies may as well. My rotten 2 year old has an assortment of pacifiers and chooses one to suit his mood.
Judy ========================================================================= Date: Thu, 18 Jun 1998 00:16:06 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Lynn Thornquist <Thornq@AOL.COM> Subject: Re: Surgery update Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Christine,
Glad to hear that your surgery went well. My grandmother had a mastectomy when she was in her thirties and never had any problems. I having been thinking about you alot and wondering how you were doing. I'm also glad to hear that you have help from others, that will be a savior in the months to come. Please keep us updated, and I will continue praying for you.
Lynn Thornquist ========================================================================= Date: Thu, 18 Jun 1998 00:19:02 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Lynn Thornquist <Thornq@AOL.COM> Subject: Re: Subject: birthday list Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Rene,
What a wonderful birthdate. Julia and my husband share the same birthday. They are exactly 28 years apart.
Lynn Thornquist ========================================================================= Date: Thu, 18 Jun 1998 00:45:03 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Lynn Thornquist <Thornq@AOL.COM> Subject: To Leanne Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Leanne,
Sorry, but you were correct, I did not send the copy of the book to you. I truly apologize to you over and over again. That will go out this Friday, so you should have it within the week.
I'm sorry to everyone else, but I did not have her personal e-mail address.
Lynn ========================================================================= Date: Thu, 18 Jun 1998 08:04:17 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jennifer Graham <Jenngram@AOL.COM> Subject: Re: Good wishes, Cristine Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Christine..our thoughts and prayers are with you
Joe and Jennifer Graham ========================================================================= Date: Thu, 18 Jun 1998 08:10:49 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jennifer Graham <Jenngram@AOL.COM> Subject: Re: Advice about a Cleft Palate, pacifier Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Regarding the fussiness about pacifiers..Jordan was a picky guy...loved the one form NICU then it became to soft so we tried every brand...ended up he liked the Gerber ones..non-orthodontic w/ a humongous bulb/nipple (whatever those things are actually called). At first it seemed to big but it was all he'd take. Also...I could only find them at the Grocery store (first found it during a shopping/screaming frenzy)....they have looney-toons characters on them.
He gave his up for his hand prior to his cranial surgery at 5 mos. then took it after the surgery fo a week. After his hand surgery he'd have nothing to do w/ it and hated us all b/c he couldn't have his hands. Now hes bandage free and is enjoying his new thumb rather nicely!!!! Time will ease the need for the pacifier...I'll inquire at the hospital today and have my husband do the same about special ones for clefts.
Jenn(Tampa/St. Pete) ========================================================================= Date: Thu, 18 Jun 1998 07:48:44 -0700 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Penny Halverson <phalvers@U.WASHINGTON.EDU> Subject: The Most Beautiful Rose Poem (fwd) MIME-Version: 1.0 Content-Type: TEXT/PLAIN; charset=US-ASCII
Hi everyone, just thought I share this poem with you. I recieved it from the other list. Thank you. Hugs, Penny :-)
THE MOST BEAUTIFUL ROSE
The park bench was deserted as I sat down to read Beneath the long, straggly branches of an old willow tree. Disillusioned by life with good reason to frown, For the world was intent on dragging me down.
And if that weren't enough to ruin my day, A young boy out of breath approached me, all tired from play. He stood right before me with his head tilted down And said with great excitement, "Look at what I found"
In his hand was a flower, and what a pitiful sight, With its petals all worn-not enough rain, or to little light. Wanting him to take his dead flower and go off to play, I faked a small smile and then shifted away.
But instead of retreating he sat next to my side And placed the flower to his nose and declared with overacted surprise, "It sure smells pretty and it's beautiful, too. That's why I picked it; here, it's for you."
The weed before me was dying or dead. Not vibrant of colors, orange, yellow or red. But I knew I must take it, or he might never leave. So I reached for the flower, and replied, "Just what I need."
But instead of him placing the flower in my hand, He held it midair without reason or plan. It was then that I noticed for the very first time That weed-toting boy could not see: he was blind.
I heard my voice quiver, tears shone like the sun As I thanked him for picking the very best one. You're welcome," he smiled, and then ran off to play, Unaware of the impact he'd had on my day.
I sat there and wondered how he managed to see A self-pitying woman beneath an old willow tree. How did he know of my self-indulged plight? Perhaps from his heart, he'd been blessed with true sight.
Through the eyes of a blind child, at last I could see The problem was not with the world; the problem was me. And for all of those times I myself had been blind, I vowed to see the beauty in life, and appreciate every second that's mine.
And then I held that wilted flower up to my nose And breathed in the fragrance of a beautiful rose And smiled as I watched that young boy, another weed in his hand About to change the life of an unsuspecting old man.
--Author Unknown - ========================================================================= Date: Thu, 18 Jun 1998 10:49:54 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Carbide Tech <ruth@CARBIDETECH.COM> Subject: Re: Surgery update MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit
Hi Christine,
Just a small note to say Hi and to tell you that I am praying for you- You made me cry and at the same time laugh. and to me, any person that can make me cry and laugh at the same time is pretty amazing! Keep up the good cheer.
Ruth Contreras
---------- > From: Christine L. Clark <apertnet@IX.NETCOM.COM> > To: APERT@LISTSERV.AOL.COM > Subject: Surgery update > Date: Wednesday, June 17, 1998 12:28 PM > > Hello to all, > > I had my mastectomy on June 9th and came home on June 11th. My father > came to help as well as Jack's sister and mother from Massachusetts. > Jack's mother is staying until mid-July so that will be a great help. I > have a hard time using my right arm from taking out the lymph nodes. > > The pathology report was a bit worse than we expected. The breast itself > had three separate tumors in it so it had already metastasized and the > cancer had spread to 7 out of the 11 lymph nodes that were retrieved. > > I am told I will be hit pretty hard with chemotherapy which may play > havoc with my bone marrow and they may also want to do radiation in the > armpit area. I see my oncologist for the first time on June 29th but > will have a bone scan before then to see if it has spread. > > In the meantime, I am going through the reconstruction so I look like a > 41 year old on one side and a 12 year old on the other so I am having fun > with jokes on that one. I am keeping my spirits up and my neighbors have > all rallied around and we have our dinners set for the next week. > > I will update you again later. Hope everyone is doing well. > > Christine ========================================================================= Date: Thu, 18 Jun 1998 08:43:38 -1000 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "Joana H. Magno, M.D." <magnomd@ALOHA.NET> Subject: Happy Birthday! MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
It's not too late to join the birthday list. Even if you are just joining the list, or have not participated in the picture exchange, don't worry, just add your name. You can send a card the old fashioned snail mail way, send an electronic greeting card from one of the services, or just send a little e-mail message.
We wouldn't want to miss out on helping you to celebrate your birthday!!!!
Birthday wishes this month should go out to:
6/20/94 Shawn Allison 23803 E. 92nd. Terrace Lee's Summit, MO 64064 gousa@kc.net
6/23/97 Julia Tait 1909 Marten Ave Comox, B.C. V9M2J9 CANADA rjrtait@mars.ark.com
6/29/88 Jasmyn Marie Smith Boczkowski 1538 Morgan Road San Bernadino, CA 92407 Patbrat718@aol.com
July birthday:
7/26/97 Emily Krebs 187 Rhode Island Ave Massapequa, NY 11758 Yonstein@aol.com
Belated birthdays for our April and May friends:
4/12/91 Kayla Smith 208 Connecticut Ave Warren, PA 16365 dsprado@penn.com
4/30/98 Andrew Hartley 118 Hartranft Ave East Norriton, PA 19401 rhartley@dzis.com
5/4/94 Elizbeth De Silva Av. Quito Y P. Solano Edif. MAG, Piso 19 GUAYAQUIL, EQUADOR lizsilva@srv1.telconet.net
There are nomore birthdays until September. Until we get a more complete list, I will work on posting this every two months or so.
Joana Magno ========================================================================= Date: Thu, 18 Jun 1998 16:16:34 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Janine Krebs <Yonstein@AOL.COM> Subject: Re: Surgery update Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Dear Christine:
I have been thinking about you. Glad to hear that you are keeping your spirits up and that you have wonderful family and neighbors to help out. This is a tough time for you and for your family. I am sure that the treatments will be tough for you also, so hang in there. Thanks for keeping us updated.
We'll be keeping you in our prayers.
Janine Krebs and family ========================================================================= Date: Thu, 18 Jun 1998 19:16:26 -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: Ize <ize@TACOMA.CEATLABS.OKSTATE.EDU> Subject: Re: Surgery update MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Hi Christine,
We are so glad to know that you are doing well and keeping your spirits up. You and your family will always be in our prayers.
Take care, The Ize's. ========================================================================= Date: Thu, 18 Jun 1998 21:17:43 -0400 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: ROBIN L HILL <CARMENRAE@PRODIGY.NET> Subject: Re: Surgery update MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit
Christine,
We were sorry to hear things are worse than expected. Hang in there. Our thoughts and prayers continue to be with you and your family.
The Hills
---------- > From: Christine L. Clark <apertnet@IX.NETCOM.COM> > To: APERT@LISTSERV.AOL.COM > Subject: Surgery update > Date: Wednesday, June 17, 1998 1:28 PM > > Hello to all, > > I had my mastectomy on June 9th and came home on June 11th. My father > came to help as well as Jack's sister and mother from Massachusetts. > Jack's mother is staying until mid-July so that will be a great help. I > have a hard time using my right arm from taking out the lymph nodes. > > The pathology report was a bit worse than we expected. The breast itself > had three separate tumors in it so it had already metastasized and the > cancer had spread to 7 out of the 11 lymph nodes that were retrieved. > > I am told I will be hit pretty hard with chemotherapy which may play > havoc with my bone marrow and they may also want to do radiation in the > armpit area. I see my oncologist for the first time on June 29th but > will have a bone scan before then to see if it has spread. > > In the meantime, I am going through the reconstruction so I look like a > 41 year old on one side and a 12 year old on the other so I am having fun > with jokes on that one. I am keeping my spirits up and my neighbors have > all rallied around and we have our dinners set for the next week. > > I will update you again later. Hope everyone is doing well. > > Christine ========================================================================= Date: Thu, 18 Jun 1998 20:40:04 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: JMuggli <jmuggli@CVTV.NET> Subject: birthday MIME-Version: 1.0 Content-Type: text/plain; charset="us-ascii" Content-Transfer-Encoding: 7bit
Sarah Elizabeth LeCara 8907 Gauguin Houston, Texas 77088 Date of birth April 4, 1997 ========================================================================= Date: Thu, 18 Jun 1998 21:45:23 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Lynn Thornquist <Thornq@AOL.COM> Subject: Re: The Most Beautiful Rose Poem (fwd) Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
What a beautiful poem that was. It truly made my day. Makes us think that we should look at everyday beautiful because there are those who cannot see and think that everyday they are alive is beautiful. Sometimes makes me not want to be able to see, even for just a day and understand what it is like to enjoy everything about life.
Lynn ========================================================================= Date: Fri, 19 Jun 1998 00:01:05 -0700 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Robyn Johnston <robyn@ORDATA.COM> Subject: Re: Happy Birthday! Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
Hi all,
First of all, Brenna's birthday is May 14th, 1996 She just turned 2.
We have been on vacation and now trying to play 'catch up'. We spent some time at the Oregon coast. Brenna had a blast playing on the beach, visiting Keiko, and swimming in the pool. She loved it! And by the way, the "Ear Band It" worked great! Thank you Christine, and everyone else, for the tip! WE tried them with both the silicone wax, and her personal ear plugs. Actually I like the personal ear plugs better because the silicone wax took so long to get soft. BTW, sorry to hear that things are tough for you right now. WE will keep you in our thoughts and prayers as well. You are certainly an inspiration to a lot of us on this list.
Congrats to eveyone who completed surgeries. I hope recover is continuing to go smoothly.
Marjorie, it is good to hear from you. I am so glad you all and BJ are doing ok. Hang in there. WE continue to pray all goes well.
Well, all for now. I need to get some rest. Brenna has not been sleeping well so nights are pretty broken.
Take care, Robyn Johnston
At 08:43 AM 6/18/98 -1000, you wrote: >It's not too late to join the birthday list. Even if you are just >joining the list, or have not participated in the picture exchange, >don't worry, just add your name. >You can send a card the old fashioned snail mail way, send an >electronic greeting card from one of the services, or just send a >little e-mail message. > >We wouldn't want to miss out on helping you to celebrate your >birthday!!!! > >Birthday wishes this month should go out to: > >6/20/94 >Shawn Allison >23803 E. 92nd. Terrace >Lee's Summit, MO 64064 >gousa@kc.net > >6/23/97 >Julia Tait >1909 Marten Ave >Comox, B.C. >V9M2J9 CANADA >rjrtait@mars.ark.com > >6/29/88 >Jasmyn Marie Smith Boczkowski >1538 Morgan Road >San Bernadino, CA 92407 >Patbrat718@aol.com > >July birthday: > >7/26/97 >Emily Krebs >187 Rhode Island Ave >Massapequa, NY 11758 >Yonstein@aol.com > >Belated birthdays for our April and May friends: > >4/12/91 >Kayla Smith >208 Connecticut Ave >Warren, PA 16365 >dsprado@penn.com > >4/30/98 >Andrew Hartley >118 Hartranft Ave >East Norriton, PA 19401 >rhartley@dzis.com > >5/4/94 >Elizbeth De Silva >Av. Quito Y P. Solano >Edif. MAG, Piso 19 >GUAYAQUIL, EQUADOR >lizsilva@srv1.telconet.net > >There are nomore birthdays until September. Until we get a more >complete list, I will work on posting this every two months or so. > >Joana Magno > ========================================================================= Date: Fri, 19 Jun 1998 01:51:49 -1000 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "Joana H. Magno, M.D." <magnomd@ALOHA.NET> Subject: Missing Address MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
I am trying to finish mailing out photos and I had a family listed only as:
Gary, Donald & Linda.....somehow I missed the last name. Can anyone help me with the rest of the address?
Joana Magno ========================================================================= Date: Fri, 19 Jun 1998 09:28:41 -0400 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Colleen Jones <coljones@PTDPROLOG.NET> Subject: clefts/tonsils/adnoids MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit
Hello, just a quick question for those who have/had cleft palates. Have any of you had your tonsils and adnoids removed also? Our ENT does not recommend removing the adnoids because of speech problems. We are still trying to figure out how to help Jacob with his breathing at night. Docs still think trach is way to go but I think we need to try everything else first and I know a lot of Apert kids get tonsils and adnoids out. Hope everyone's surgeries have gone well. Colleen Jones and gang ========================================================================= Date: Fri, 19 Jun 1998 10:42:41 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Judy Amerman <jamerman@UTI.COM> Subject: Playing catch up MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit
Hi all, First of all, Nick Amerman's birthday is May 3, 1990. Just got back from a wonderful vacation in Myrtle Beach yesterday. Nick and I had the pleasure of vacationing with Don, Cathie and Teeter Sears. By the time they left for home, I felt like we had a new family. Don & Cat are just wonderful people and that little lady of theirs is just a little sweetheart. I have l cute story to share with you about our last night there. I had planned to eat at our hotel room and at the last minute decided to eat at the restaurant. As we were seated, I noticed that we were next to a real nice lady that we had met at the pool. She was very interested in Nick and Teeter since she was a nurse. It was Diane, Don. Anyway she had a seven year old daughter named Brooke and ther was a very friendly little girl sitting withthem named Morgan. Morgan's parents were seated next to Diane and her family. Morgan came up to Nick and was just talking and talking to him. Next thing I knew, She asked Nick if he would marry her. Nick said No. As we were getting ready to leave, Nick went up to Morgan and kissed her on the cheek. This little girl got red in the face, put her hand to her cheek and just didn't know what to say or what to do. It was so funny. Her and family and myself were laughing so hard we could harldy breathe. I guess though, you really needed to be there to appreciate just how funny it was.
I also noticed that Beth has not responded back to the listsserv. Beth, I am going to help you out a bit here. Hope you don't mind. Beth is the 34 year old that introduced herself from Iowa. I have spoke to Beth several times by phone and e-mail. She is the apert adult from Iowa. I think she is a little gunshy with this listserv thing. Beth seems to be a real sweet girl and I know she is anxious to meet other apert families. Hopefully she is going to the lake with me to meet the Jefferson's and the Bailey's in July. Beth, did you get the time off yet? By the way Beth, I did get your keychain
Don, Nick is still talking about you guys and his best buddy. Nick really attached himself to Don wile we were at the beach. He really misses his Dad who is currently working in India. So he really misses the male attention.
Well I guess I have been chatty enough. We got alot of rain while I was gone so I better get the mower going and get the bills paid and all the rest of the domestic duties done around here.
Judy ========================================================================= Date: Fri, 19 Jun 1998 10:44:59 -0700 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Penny Halverson <phalvers@U.WASHINGTON.EDU> Subject: IRC's Tonite! Friday, June 19th Comments: To: Crouzon Syndrome Support Group & Other Craniofacial Anomalies <crouzon@u.washington.edu> MIME-Version: 1.0 Content-Type: TEXT/PLAIN; charset=US-ASCII
Hi everyone!!!
Tonite is IRC Big Chat Nite!! So let's get acquainted with each others. :-) Keep in mind that some people will show up alittle later than the time started. Please join us! :-)
Date To Meet On: Friday, June 19, 1998
IRC Server: please use "ChatNet" (Any locations)
Port Setting: 6667
Channel: #apertcrouzon or if noone's there, go to #widesmiles
Time: 11:00pm AT/10:00pm ET/9:00pm CT/8:00pm MT/7:00pm PT/5:00pm HT
To check out the mIRC Help Page for Windows 3.x and Windows 95 users at: http://www.mirc.com.uk/
For MAC Users: Please download IRCle at: http://www.amug.org/~ircle/
Hugs, Penny
http://www.crouzon.org/ mailto:penny@crouzon.org ========================================================================= Date: Fri, 19 Jun 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: Carbide Tech <ruth@CARBIDETECH.COM> Subject: Kris MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit
Hi guys!
I don't remember telling you all how Kris did on her surgery on 6/4- so if I didn't - everything came out real good- The only thing that we got disappointed with was that the bridge on her nose was not done because of a little infection "pus pocket" that was there- so the Dr. didn't want to take chances. Other than that Kris looks absolutely- beautiful! She looks real cute!
Kris birthday is coming up- JULY 2 - She will be 15 y/olds- She thinks she's going on 20!
Everyone have a nice week-end!
Claudia I have not forgotten you! I am working on it! ========================================================================= Date: Fri, 19 Jun 1998 13:19:33 -0700 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Penny Halverson <phalvers@U.WASHINGTON.EDU> Subject: mIRC Chat's Infor-Pls Read (fwd) MIME-Version: 1.0 Content-Type: TEXT/PLAIN; charset=US-ASCII
Hi everyone
I recieved few emails from some of you in asking on how to go to the right place at the channel #apertcrouzon under mIRC.
In mIRC, be sure to go to set-up, open it up then click on IRC's List of Servers or servers.
There will be more then 1 server such as Delnet, Efnet, and etc.
The server you want to go to in order to go the right place for channel #apertcrouzon is:
Go and click on "ChatNet" from any location you like to pick.
If you need help, please contact me or Tom. Thank you.
Hugs, Penny :-)
mailto:phalvers@u.washington.edu mailto:hwy2heaven@kendra.com mailto:penny@crouzon.org http://www.crouzon.org/ ========================================================================= Date: Fri, 19 Jun 1998 22:03:11 -0700 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: lisa mcgahan <wmcgahan@IX.NETCOM.COM> Subject: cleft palate MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit
Morgan has a cleft palate. I know not all Apert's children do but I was hoping that you'll could help me with the following. Morgan is starting solids and she is having the darndest time. Most of the time she sneezes and the food comes out her nose and then she is too frustrated to eat. Does anyone have any suggestions? thanks!!!!!!!!!!!!!!! ========================================================================= Date: Sat, 20 Jun 1998 14:30:24 +1200 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Howard & Ann <howrdnan@IHUG.CO.NZ> Subject: Re: Missing Address Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
Joana I have 55 names on my list (which is fewer than Frank Contrino has) so it is either one of the families I am missing or they belong to one of those I have as "xyz Family". So, sorry I can't help but I am interested to know who they are to make sure they aren't one that I am missing.
Regards, Ann NZ
At 01:51 AM 19/06/98 -1000, you wrote: >I am trying to finish mailing out photos and I had a family listed only >as: > >Gary, Donald & Linda.....somehow I missed the last name. Can anyone >help me with the rest of the address? > >Joana Magno > > ========================================================================= Date: Sat, 20 Jun 1998 08:55:09 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Janine Krebs <Yonstein@AOL.COM> Subject: Re: cleft palate Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Hey Lisa:
Emily had a cleft palate also, just repaired May 22nd. I know what you are talking about. It was very difficult at first for her also. She would sneeze every time she ate and the food would come out her nose. I am sure it bothered her and burned. She would cry and I would have to pick her up and calm her down. Some times she would eat again and other times that was the end of the meal for her.
After awhile she kind of got used to it and the feeding time was ok. Even if she sneezed and it came out her nose, it was ok with her.
I have to say it's a pleasure having the palate fixed. It's a lot less messy, for sure.
Hope all is well.
Janine ========================================================================= Date: Sat, 20 Jun 1998 06:12:37 -0700 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: The Krebs Family <Yonstein@AOL.COM> Subject: May These Special Gifts Come Your Way - from The Krebs Family
Guess what!! You have just received an animated greeting card from The Krebs Family You can pick up your personal greeting by connecting to the following WWW Address
<A HREF="http://www.bluemountain.com/cards/box3457x/ax422crwrdphxap.htm">http://www.bluemountain.com/cards/box3457x/ax422crwrdphxap.htm</A>
(Your greeting card will be available for the next 30 days) This service is FREE! :) HAVE a good day and have fun!
____________________________________________________________ Accessing your card indicates your agreement with our Website Rules posted at the bottom of the following Web location: (You're welcome to send a free card to someone at this location) http://www.bluemountain.com ========================================================================= Date: Sat, 20 Jun 1998 14:30:37 -0400 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Steve & Stacy <sshb@EROLS.COM> Subject: Re: post exterior release MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
lisa mcgahan wrote:
> stacy- > > why does brooke have to have another posterior release done? do you think > if they would have waited until she was a little older it would only have > had to be done once? thanks -- lisa > > Sorry it has taken so long to respond. I am finally trying to catch up with > the mail. Brooke is in the hospital with an infection that started in her > scalp after her crainial facial surgery and has ended up in her shunt. This > makes shunt #5. She is now fighting a fungal infection from her central line. > She has been in the hospital since May 27 and we will be lucky if she is out > before July 1.
Anyway, to answer your question, Brooke needed the postierdone at 5 months because she needed the room. She will only need another postier if she runs out of room again. We just found out about 2 weeks ago that the crainial facial surgery she just had in February gave her more room than she has ever had so the postier may not need to happen any time soon. Stacy
> > > > > > > ========================================================================= Date: Sat, 20 Jun 1998 14:43:30 -0400 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Steve & Stacy <sshb@EROLS.COM> Subject: Re: hello!!! - Joining the serv MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
WELCOME JENNY! You are an inspiration to us all with kids and show us all that our kids have a wonderful future. Stacy Bell
Jenny Brown wrote:
> Hello everyone, > > My name is Jenny Brown. I live in Savannah, Georgia (hot and humid) and was > born with Apert's. 11-11-66!!! The first few years I had all of the normal > surgeries, but not a mid face advancement. It is wonderful to meet other > families who have the same challenges/ worries/ triumphs and victories. You > all are strong and loving people with a lot of heart.. I first met the > Internet Apert's family thru Teeter's Page and have most recently joined the > Listserv and been in contact with Christine ( thanks by the way - i keep my > bracelet on me all the time!) > > A little bit more about me - single no kids.. I'm a social worker working on > my Master's Degree in Counseling - I work with Senior Citizens in a > retirement community - LOVE my job. Am in the middle of training for a > promotion at work and studying for finals at school so life is busy! I have a > great and supportive family, a wonderful group of friends from my church where > by the way i play trumpet and sing with our folk music ministry. > > The secret to my success : my parents giving me every chance and pushing me > through every trial and challenge. Surrounding myself with loving and > supportive people and NEVER giving up, It is that fierce determination that > gives the get up and go! > > You are all in my thoughts and prayers...It is so good not be the Lone > ranger!!!!!! > How do I get on the picture exchange? > Hope you guys have a great rest of the week. > Keeping cool in the shade in Hot Savannah... > Jenny ========================================================================= Date: Sat, 20 Jun 1998 00:34:30 -0400 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Gary Puleio <p8896@ALLTEL.NET> MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit
Sorry that we got in touch with the Apert's list and then vanished. Donald had surgery on June 9 and nothing was successful. He spent 4 days in ICU and another 4 in the hospital for nothing. The midface advancement could not be done because Donald lost too much blood from the initial incision. The anesthesiologists intubated him with too large a tube so his throat swelled and he couldn't be taken off the respirator for several days. There's a reason for everything. I guess it wasn't time for the surgery.
Donald's b-day is 7-13-91 for the birthday list if it's not too late. p8896@alltel.net ========================================================================= Date: Sun, 21 Jun 1998 08:12:10 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Janine Krebs <Yonstein@AOL.COM> Subject: Re: post exterior release Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Stacy:
Sorry to hear that Brooke is having such a hard time. That is a very long time in the hospital. Hope she comes home soon and is doing better.
Best wishes,
Janine Krebs ========================================================================= Date: Sun, 21 Jun 1998 08:14:51 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Janine Krebs <Yonstein@AOL.COM> Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Sorry that Donald went through such a difficult time. Hope he is home and doing ok now. I guess that's the way we have to keep looking at things, it was or wasn't meant to be, depending on the circumstances. Otherwise, we would never get through all of these things.
Best wishes,
Janine Krebs ========================================================================= Date: Sat, 20 Jun 1998 10:42:56 -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: baconsmith <bluenose@TELUSPLANET.NET> Subject: Re: cleft palate Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
Hi Lisa, Pat here, mom to EvaJessie (5yo now!) EvaJessie was born with a cleft palate. We had a feeding plate for her (called an obturator) which fit in the roof of her mouth. It prevented some food from getting into the cleft. It sounds as tho Morgan doesn't have an obturator, tho. One of the things I've heard mentioned from other parents is making the food runny at first with some formula or breastmilk and feeding from the side of a spoon so Morgan can just take little sips of it at a time until she gets used to it. She'll eventually (probably) be able to manoeuver her tongue against the side or front of her mouth so that she can swalow without pushing the food up into the palate.
Try doing this yourself. Take a small sip of something and figure out where your tongue has to sit in order for you to swallow. Mine sits right at the front of my mouth against my teeth. Well, somehow, Morgan has to get that food to the back of her mouth, past her tongue. Experiment with giving it to her maybe over toward the side so she can maybe press her tongue against her cheek to move the food back toward the back without pushing it up into the open palate. And if you make the food runny to begin with then what does get pushed up into the palate will hopefully be thin enough so that it doesn't cause too much discomfort. I've also heard of kids who dislike fruit because of the acidic nature and that it causes more discomfort than other foods.
Let us know how it goes. Hope this helps a bit. Pat and EvaJessie in Calgary
ps. when do they plan to close Morgan's palate? email to: bluenose@telusplanet.net IM: onlypeach shake and shake the ketchup bottle. none will come and then a lot'll ... unknown ========================================================================= Date: Sun, 21 Jun 1998 10:40:06 -0400 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: foster <foster@ICONTECH.COM> Subject: shoulders Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
I have a question about the shoulders. Billy's arms can go up to be even with his shoulders but no higher. Also his right arm seems to be able to go a little higher than his left. I think the difference between left and right may be because his one heart surgery was done by going in underneath his left shoulder blade. Anyway yesterday one of Billy's Aunt's was holding his up by his arms while walking his around our yard and it was very clear that he was uncomfortable so she stopped right away. I want to know anything anyone may know and anything that will help us go about helping him in this situation. Of course we will be taking his to be checked but I want to know what any of you guys have experienced in this situation. Any input will be great.
Karen(PA) ========================================================================= Date: Sun, 21 Jun 1998 11:05:18 -0400 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: foster <foster@ICONTECH.COM> Subject: Cleft palate Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
Lisa,
I wanted to tell you about a child I took care of when I was working at a daycare before Billy was born. There was a baby girl who was born with a cleft palate that I took care of in the infant room. She didn't have her's fixed until she was about six months old. Whenever we gave her a bottle she did good without much getting out of her nose but when we gave her cereal of baby food she had a very hard time. Her mother was so worried that she wasn't getting enough food and that she would not gain weight the way she should.Anyway what we ended up doing was feeding her by spoon and if she started to fuse to much we stopped and waited a little while and then we gave her the food or ceral in a cereal feeder.It was what her doctor told her mom to try. It worked very well and she was able to get all of the food she needed. And of course her mother was happy. There was no harm in doing it that way because it was just until her palate was repaired. I do not think it is a good idea to use cereal feeders instead of spoon feeding in general when the child has no reason to use one but in cases like these it was a great help. Also the child became a little butterball after her palate was repaired.
Karen(PA) ========================================================================= Date: Sun, 21 Jun 1998 11:12:03 -0400 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: foster <foster@ICONTECH.COM> Subject: Donald Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
Thank god Donald is doing better and that he is back home. It must have been terrible to go through that experience. What a thing to have to go through. Hope he is feeling better these days and we will keep him in our prayers and hopefully the next time will go much better.
Karen(PA) ========================================================================= Date: Sun, 21 Jun 1998 09:41:56 -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: baconsmith <bluenose@TELUSPLANET.NET> Subject: Brooke Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
Hi Stacy and Steve, so sorry to hear that Brooke has been in hosp for such a long time. What a worry for all of you. I wanted to tell you that I loved seeing you and her on the Out of the Shadows tape. What a sweet baby!
How did the infection on her scalp get started? It must be awful for you and her to be dealing with this. I'll be thinking of you and sending lots of strong positive thoughts to Brooke to fight this. Pat and EvaJessie in Calgary email to: bluenose@telusplanet.net IM: onlypeach shake and shake the ketchup bottle. none will come and then a lot'll ... unknown ========================================================================= Date: Sun, 21 Jun 1998 09:41:58 -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: baconsmith <bluenose@TELUSPLANET.NET> Subject: Donald Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
Whoa, that must have been hard for all of you. Have you got any answers from the docs about why Donald lost so much blood? Really hard for parents to handle the anticipation and then this. Hope you all are doing better now.
Pat and EvaJessie in Calgary email to: bluenose@telusplanet.net IM: onlypeach shake and shake the ketchup bottle. none will come and then a lot'll ... unknown ========================================================================= Date: Sun, 21 Jun 1998 19:20:13 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Lynn Thornquist <Thornq@AOL.COM> Subject: Re: Playing catch up Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Judy,
I loved your story about Nick and the little girl Morgan. Kids are so funny sometimes, they really say the darndest things. And what a little casanova (sp.) Nick is. He is already getting the girls, even at such a young age.
Lynn ========================================================================= Date: Sun, 21 Jun 1998 20:49:57 -0700 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Robin MacDonald <macdonal@GOLDEN.NET> Subject: shoulders MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Our daugter cannot lift her arms very well above her shoulders...although there is some range above the shoulder height. I'm sure it has something to do with the syndrome. She loves swimming...and I guess backstroke is out of the question. The limited range really hasn't affected much if anything else however.. ========================================================================= Date: Mon, 22 Jun 1998 13:56:17 +1200 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Howard & Ann <howrdnan@IHUG.CO.NZ> Subject: Re: shoulders Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
Hi Karen
>I have a question about the shoulders. Billy's arms can go up to be even >with his shoulders but no higher. Also his right arm seems to be able to go >a little higher than his left.
As Amy isn't with me I can't check which side is better than the other, but she certainly has restricted shoulder movement. When she was 1 year old the orthopaedic surgeon did an arthroscopy (hopefully I have got the right term, it was a while ago!!) which showed the structure of her shoulder and there is NO way she has a ball shaped bone to rotate nicely in a regular-shaped shoulder. He consulted with a visiting UK specialist and they agreed that as they couldn't guarantee improved function it was best to do nothing.
Amy is assessed at 6-monthly intervals to check whether or not she is losing movement. She also now has two sets of exercises to do to (1) extend the muscles that raise the arm from the side position, and (2) increase the strength of the muscles that raise the arm from the forward position. The Physiotherapist worked them out for her. She is meant to do them daily but so far we aren't doing too well with regularity - once I get around to sticking them on the back of the door the reminder may be a little more obvious.
My encouragement is to ask if she still wants to be able to reach up and hug her Mum and Dad when she is older. If so, she needs to do the exercises. The rule is "Use it or lose it". At this stage she hasn't worked out that when she is older she is going to be taller and won't have to reach up for a hug anyway, but by then I will have thought of another line.
A lot of children with Apert Syndrome have this shoulder restriction, and the older studies have certainly shown the restriction gets worse as they get older - and my interpretation of that is, because of their restricted movement they don't do a lot of the reaching up exercises other children do as a matter of course during the day. Therefore the already shortened muscles don't get stretched and become more shortened.
Anyway, have a chat with your physiotherapist. S/he will no doubt be able to come up with something. If not, I am happy to copy and send you Amy's exercises. Also one of the papers in the "Clinics" deals with this issue so we could send that over if you are interested.
>Anyway yesterday one of Billy's Aunt's was holding his up by his arms while >walking his around our yard and it was very clear that he was uncomfortable >so she stopped right away.
Wise Aunt. Someone reported recently that their child's arm/s was/were broken because someone tried to swing them high! No doubt that person will reply.
My guideline for any swimming or sports teacher is to accept that Amy has restricted movement, but not to accept that what she does is all she can do (she can be a bit lazy). I tell them to encourage her to stretch further but not to push her to the point of pain.
I have on file the previous Listserver discussions on shoulders. Let me know if you want them and I can email them to you.
All the best
Ann NZ ========================================================================= Date: Mon, 22 Jun 1998 13:56:14 +1200 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Howard & Ann <howrdnan@IHUG.CO.NZ> Subject: Donald's Surgery and Anaesthesiologists Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
Hi Gary
Thanks for the update on Donald. What a ghastly experience for you all, and how frustrating and disheartening.
This ties in with my theory that it isn't so much the surgeons we have to worry about (assuming they are good at what they do of course!), it is the anaesthesiologists - and in New Zealand we usually don't get to see them until the day of the operation, so we don't even know who they are, what their level of skill is, or what sort of person they are. At least we do get the chance to learn that with the surgeons.
In the light of your experience (and no doubt that of a few others), maybe there needs to be a move towards making the anaesthesiologists have a more up-front role for the families. Or maybe that is just another "battle" we really don't have the energy for!!
All the best for a more satisfying experience next time around.
Regards Ann NZ
At 12:34 AM 20/06/98 -0400, you wrote: >Sorry that we got in touch with the Apert's list and then vanished. Donald >had surgery on June 9 and nothing was successful. He spent 4 days in ICU >and another 4 in the hospital for nothing. The midface advancement could >not be done because Donald lost too much blood from the initial incision. >The anesthesiologists intubated him with too large a tube so his throat >swelled and he couldn't be taken off the respirator for several days. >There's a reason for everything. I guess it wasn't time for the surgery. > >Donald's b-day is 7-13-91 for the birthday list if it's not too late. >p8896@alltel.net > > ========================================================================= Date: Sun, 21 Jun 1998 22:13:33 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Andrea Gartner <LUVS2WRTE@AOL.COM> Subject: Re: shoulders Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Personally I can't rise my arm straight up. It was worse up until now. I think it has something to do with the shoulder. I've noticed that exercising helps a little. Especially that one where you you sit down on a bench and pull a bar done. Since I've started using that I have noticed some improvement. Or just using hand weights too helps. But like anything, you have to do it daily or weekly. Sometimes I gotta remind myself. Hope it helps.
-Andrea ========================================================================= Date: Sun, 21 Jun 1998 22:15:47 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Andrea Gartner <LUVS2WRTE@AOL.COM> Subject: Re: Donald's Surgery and Anaesthesiologists Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
I agree. We should know more about the anaesthesiologists than the surgoens. After all those are the one's that have anothers life in their hands. That's the thing about surgery that scares me the most.
-Andrea