========================================================================= Date: Tue, 14 Apr 1998 22:31:47 -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: HANDS MIME-version: 1.0 Content-type: text/plain; charset="us-ascii"
Jenn, We were told that if the nails are fused into one then the bones will be too. Like Daryl's hands had a seperate pinky nail but his forefinger,middle, and ring was one continuious nail and the bones were fused too. This was obvious on x-ray.
Our surgeon was grilled on this subject by me!! I wanted to know if it was possible to have the type III hands and get all five fingers. He said yes, but that can sometimes be worse than getting only four. We take everything with a grain of salt. I wanted to make sure he wasn't just being lazy and didn't want to takle this. We made him prove to us why he felt that way. He explained that it is not only fusion of the bones, it is also a poor supply of vessels and tendons. There is not enough blood vessels to sometimes support all five fingers. You run the risk of creating the last two fingers and one could not have enough blood supply and eventually you could loose it. Then the blood vessel that you used for the fifth finger is gone when you could have given it to the other finger.
Also, with Daryl's hands, his tips were so tight together. Our doctor (after seperating the pinky and thumb, had us imagine his fingers split into three. I got his point!! Daryl's finger tips would be so tiny. I would think that it would make them harder to use and fragile. I want you to know though that it was our choice to go with four instead of five. Our surgeon said he would do what ever we felt was best. I appreciated him not pushing the info on us and always letting us know that we had the choice.
We have all three fingers and thumbs now. Their isn't anything that he can't do. Some are a little harder but not much. He feeds himself, plays with his toys, rides his trike, holds on to the swing, and picks up money off the floor. What ever you choose for Jordan will be what is best for him. I just wanted to share our experience with you. God Bless!
Denise Graham ========================================================================= Date: Wed, 15 Apr 1998 22:13:08 +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: Sign (was speech, etc.) Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
>I do have a question with relation to the sign language. Forgive me for >sounding naive, but does the fact that our kids are missing digits interfere >with using sign language at all?
Janine, I have attended NZ sign language classes for the last two years (not this year though) and one of the students was an American. Our tutor is multi-linguistic in sign and they often discussed semantics in American sign. From what I learned I would think that for our children learning American sign would be rather difficult - I understand it is done with one hand (NZers use two). However, Amy tried really hard to sign with me and her digit flexibility improved during that time, so they can do a certain amount. The really important thing would be for them to learn the hand signs (not finger) for food, toilet, drink, bag, hat, socks, shoes, icecream etc. - just the same words we expect them to learn verbally.
AND make sure their siblings, aunts, uncles, grandparents, kindergarten/preschool workers and classmates, local friendly shopkeeper, etc, learn what they mean. What a buzz for them when people outside the family understand as well!
With heaps of praise and encouragement, once they realise they are understood they quickly develop self-motivation and just absorb it.
There is certainly nothing to be lost in giving it a go.
Regards, Ann NZ ========================================================================= Date: Wed, 15 Apr 1998 22:13:12 +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"
Amy had rosebud hands (no separation at all) and the middle three fingers on each hand were fused to the extent they shared a nail. She now has 5 digits on each hand and (so far!) the only nail she has lost has been a thumb nail. The thumbs are rather podgy, the middle three fingers aren't beautiful, and none of the fingers bend, but she has opposition between her thumbs and ring or little fingers on each hand.
The procedure used by our PS was bilateral abdominal flaps. Three weeks flat on her back with both hands sewn to her groin, attached between the thumb and first fingers. Then he released the groin end of the flap and attached it to the middle/ring fingers. Then he released the thumb ends and attached them to the first/second fingers. Apart from the groin donor sites (he used them again a year or so later though not attached the second time) the only scar she has is on one forearm where he had to obtain some more skin. He did comment he probably should have taken more from her groin in the original flap - but it certainly looked to me that he had taken a huge amount, and there just ain't that much of a 15month old here to take it from!!
Each child is different and each surgeon is different.
Regards, Ann NZ
At 03:38 PM 14/04/98 EDT, you wrote: >Posing a general question....How many of you have experienced a bony fusion >with the fingers? And if so, were they able to create all 4 fingers >regardless? There was some talk w/ our doctor and he made a nonchalant comment >thats bothering me regarding bony fusions. Joes seen Jordans x-rays so I have >to wait until he gets home to find out if Jordan has it or not. But the doctor >indicated that if the had a bony fusion they would have problems creating all >4 fingers. Just wondering..Jordans hands are pretty bad, but it appears the >worst is w/ the thumbs, not the first three fingers where the doctor indicated >the bony fusion may be. > >Sorry if this is confusing. Thanks in advance for the info. > >Jenn(Tampa/St. Pete) > > ========================================================================= Date: Wed, 15 Apr 1998 08:35:17 -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: Christopher Kilner <Christopher.Kilner@USPTO.GOV> Subject: The Kilners MIME-Version: 1.0 Content-Type: text/plain
Thank you to Denise and Robyn and everyone else praying for us.
In regard to Jenn's question about bony fusion - Ceci had extensive bony fusion, including her thumbs, but she ended up with all of her fingers. The surgeon's main concern was with each finger having sufficient vascular support and tendons.
Our Easter was difficult since Blair wasn't into any of the Easter traditions Ceci loved so much (coloring the eggs, the egg hunt, dressing up for church, etc...) but the Easter message of the Resurrection has never been more meaningful.
Reggie and I took the day off on Monday and took Blair down to the White House for the President's annual Easter Egg Roll on the South Lawn. We went with my brother and his wife and son and a work/school friend and his wife and daughter. The 9 of us had a ball and we've started a new Easter tradition with Blair. By the time Blair's egg made it across the lawn, it looked like it had been in a war (only about 60% of the egg made it). He was excited about seeing the Easter Bunny until he realized how BIG that guy in the bunny suit was! The highlight for Blair was when the Air Force band playing in the East Colonnade of the White House waved back to him. While riding the Metro back home, he had to tell everyone that he went to the White House and the band waved to him.
My final exams for law school are keeping me busy and Reggie is already dreading this summer when my studying for the bar will involve classes 5 nights a week from 6-9 PM. We are also bracing ourselves for an emotional time when Ceci's godmother, Reggie's sister Gigi, comes to visit next week. Gigi was very close to Ceci and doesn't have the support Reggie and I have had in dealing with our grief. When things calm down, I hope to be able to thank all of the people who participated in the balloon release for Ceci.
We miss our Ceci terribly, but are finding comfort in our wonderful memories, in Blair (who has so much of Ceci inside him since Ceci taught him so much), in our knowledge of how many lives Ceci touched in a positive way, in our knowledge that every day with Ceci was a precious gift, and in our knowledge that Ceci knew nothing but love from everyone she met.
Chris Kilner ========================================================================= Date: Wed, 15 Apr 1998 10:52:14 -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: Tennesse Craniofacial Center MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii
Does anyone have either a direct telephone number (including area code), a mailing address or an e mail address for the Tennesse Craniofacial Center? I have today off and tried to call to request Dr. Sargent's book using the 1-800 number and can't use it from my area. A call to directory assistance didn't help as I don't even know which city it is in.
I am sure there is a way I could find it on the internet but I'm not that computer literate!
Thanks in advance, Leanne ========================================================================= Date: Wed, 15 Apr 1998 11:01:17 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: Jenngram <Jenngram@AOL.COM> Subject: Re: Tennesse Craniofacial Center Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Leanne,
Aside from the 800 #, here is a direct one 423-778-9192..and fax line 423-778-8172 and e-mail www.erlanger.org/cranio
Hope it helps
Jenn(Tampa/St. Pete) ========================================================================= Date: Wed, 15 Apr 1998 08:20:26 -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: "Pulido, Laura" <PulidoL@OR.CSMC.EDU> Subject: Re: HANDS MIME-Version: 1.0 Content-Type: text/plain
From what Denise Graham wrote, Martha's hands were exactly like Daryl's -- One continuous nail and a separate one for the pinky, and the tips of the bone were fused. Just like Daryl's doctor, Martha's doctor said that he would try for five fingers but to be prepared to have three of four. Said he wouldn't know for sure until the day of surgery.
Well, I kept thinking to myself, Martha will have five fingers, God has to help this doctor separate five, after all he owes me, he sent her to me this way, the least he can do is make all her surgeries turn out okay. Guess what? The day of surgery, after a couple hours, the doc comes out with some paperwork for us to sign, approving the removal of the middle finger. I couldn't even sign the papers. I asked Jose to sign them. I was so angry once again. I couldn't stop crying. I didn't care that I was in front of a bunch of people, I cried for hours. (I'm crying now as I remember this.)
I felt that the doctor wasn't trying hard enough, that he was just trying to get the procedure over with, that he was a lazy mother f_____. Although he explained everything about there not being enough blood vessels to supply blood to five fingers, that if he did five that the middle one would eventually "die", yada, yada, yada.
Gotta go! Laura Pulido (Please visit Martha on Teeter's Page) ========================================================================= Date: Wed, 15 Apr 1998 12:59:21 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: DnJJenner <DnJJenner@AOL.COM> Subject: Re: any news on BJ? Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
~Denise, I know how you feel... after Courtney had her Cran. surgery, she had fallen and got the biggest goose egg on her forehead, I couldn't believe it! but she was fine and the doctors told me the same thing... Kids fall, her head is just like any others. But it is scarey!
Dawn ========================================================================= Date: Wed, 15 Apr 1998 14:50:31 +0000 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "J. G. Lindamood" <chanan8@JUNO.COM> Subject: Job possibility
Hello all!
I had two interviews today, one at a retirement community in their activity department, the other at a nursery (plants). I'm praying both will cme through so I can rebulid my savings!!!!
Jenn,
I forget what picture of me I sent to you. To put my two cents in, my hands are like Amy's: Amy had rosebud hands (no separation at all) and the middle three fingers on each hand were fused to the extent they shared a nail.
I can wiggle my pinkie on both hands, so I'm presuming if they were separated, my pinkies would be intact. The other three are questionable. Hope this helps.
I too have thought about BJ. He's on my mind frequently. I Hope the Harmon family can feel our prayers and thoughts!
Joanne, cloudy, chilly in Ohio.
_____________________________________________________________________ You don't need to buy Internet access to use free Internet e-mail. Get completely free e-mail from Juno at http://www.juno.com Or call Juno at (800) 654-JUNO [654-5866] ========================================================================= Date: Wed, 15 Apr 1998 16:11:27 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: ETolson643 <ETolson643@AOL.COM> Subject: Re: Wrong about the Book. Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Lynn What is your address so I can send you a check for a copy of the book?
I am definitely interested in the copy...after all, Tim is the inside cover!!!
Beth Tolson 329 Pine Street Holbrook, MA 02343 ========================================================================= Date: Wed, 15 Apr 1998 17:49:43 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: CoH 1862 <CoH1862@AOL.COM> Subject: Re: hands Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Jenn, Mallory had the tips of two fingers fused, but they still got 4 fingers. They are a little shorter but still look good. Diane Youngblood ========================================================================= Date: Wed, 15 Apr 1998 17:16:27 -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: Laurie Ann Bailey <jkb@ELPASO.NET> Subject: Re: any news on BJ? MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Chad & Denise Graham wrote: > > Daryl fell a couple of weeks ago and busted his eyebrow. He needed four > stitches to close up the gash. To say the least I was scared, but calm. > Has anyone else had an experience like this.
Hey Denise,
Back in July of last year, we had one of our Siberian Husky dogs in the house. Jacob was becoming really mobile. He was rolling all over the floor. I was at work, Kevin at home when Jake rolled toward Sabrina (the dog). She went to get out of his way and accidently stepped on him. He screamed and she bolted with her back paw on his head. He ended up with about 35 - 40 stitches in the back of his head. I think that was the scariest phone call I've ever gotten from my husband. The following Monday we took him to see his plastic surgeon to make sure nothing had moved on us. Luckily, everything was still in place. So, I know exactly how you feel.
Laurie Bailey jkb@elpaso.net ========================================================================= Date: Wed, 15 Apr 1998 20:32:54 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: GSieb91515 <GSieb91515@AOL.COM> Subject: Re: Cranial Vault Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Jenn and Janine-
The total vault is not just for those with multiple sutures fused. Only Jonathan's coronal sutures were fused. The growth of Apert children is so unpredictable and varies so much from case to case. The total vault may not be necessary for everyone. We didn't realize Jonathan needed it until after his head grew so tall, which wasn't predicted when they did his cranioplasty and remodeling when he was 6 months. They don't like to do the total vault too young because it involves the back of the head and there is more blood loss. We also tried the Doc band after his first surgery but that didn't help his head from growing tall either. We were told that the titanium plate he had in his forehead kept the brain from being able to push his forehead out thus causing it to grow up. I believe that was part of it but not the only reason. Again, we are very pleased with the results but there is no quarantee that things will stay this way. We go back for another skull xray in 2 months just to monitor everything. Oh yeah, the vault is just another term for the skull and there are varying opinions on what a total vault is. Basically it is remodeling the complete skull. In Jonathan's case, they put the back on the front and the front on the back. This reduced the heigth of his head about 1and half inches and they advanced the forehead about 20 mms. Hope this helps anyone who is confused on the "vault" stuff.
Brenda ========================================================================= Date: Wed, 15 Apr 1998 20:41:36 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: Yonstein <Yonstein@AOL.COM> Subject: Re: Tennesse Craniofacial Center Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Leanne:
Also, the address for Tennessee Craniofacial is 975 E. Third Street, Chattanooga, Tenn 37403. Send it to Attn: Terri Farmer.
Hope this helps.
Janine ========================================================================= Date: Wed, 15 Apr 1998 20:53:21 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: Yonstein <Yonstein@AOL.COM> Subject: Re: HANDS Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Hello all,
I have been working this week and away from my computer. Boy, do I miss only reading this mail every 3 days. I feel like I have so much to catch up on and so much to say.
Hope the two little ones are healing from their falls, one was the wrist and the other was Daryl's head, if I remember correctly. It's very scary to think about them falling on their head. I know I am very protective of Emily's head, especially when her brother is playing near her.
I, too, think about the Harmon family and BJ. Hope no news is good news.
Well, on our homefront, Emily has been making great strides. She has finally figured out how to move her arm so she can roll over both ways, and keep on rolling and rolling and rolling. In addition she started to sit up by herself today. She just hasn't figured out to put her hand down when she starts to fall.
As far as the hands are concerned, I too am curious about it also. I too was told that her doctor didn't know about her hands either until he operated. He also told me that he could get five fingers, but that it might not do her any good to have a finger that didn't do anything but got in her way because of the blood supply and nerves and tendons. I, too, would like to know your thoughts on the kids without all five fingers. It's a tough decision for me because I do feel very strongly about it now. You know, you want them to be as much like everyone else as possible. But on the other hand, if the finger is going to get in her way, than what good is it?
Well enough rambling for me. I told you I had a lot to say.
Hope all is well with everyone.
Best wishes,
Janine Krebs ========================================================================= Date: Wed, 15 Apr 1998 22:13:50 -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: Scottish Ritte Medical Center MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit
---------- > From: Gabriel Dantur <gdantur@IMPSAT1.COM.AR> > To: APERT@LISTSERV.AOL.COM > Subject: Scottish Ritte Medical Center > Date: Tuesday, April 14, 1998 10:51 PM > > Hi everybody, > > We have decided to travel to the states on an "exploratory" trip in order > to decide which medical team to use. > We will be getting there on the 26th of April and staying for one week in > order to visit 3 teams. > > I work for Kimberly Clark in Argentina and the medical office of KC in the > US is helping me a lot. > The central office is in Atlanta and they have recommended me to visit Dr. > Fernando Burstein in Scottish Rite Medical center. > I spoke with him on the phone and he sounded great. > Nevertheless I've never heard of him in the listserver. > > Does anybody in the family use him or the mentioned medical center ?? > Any information about will be warmly welcomed. > > Once again inmense thanks for everyone. > > The Dantur's
Gabriel,
Hi, we are Mike and Robin Hill and we live in Newnan, Georgia. We have a daughter, Carmen Rae Hill who was born in January 1998 and has Apert Syndrome. We are using the Craniofacial Team at Egleston Children's Hospital in Atlanta, GA. Dr. Robert J. Wood is the Director of the Craniofacial Center and is the Craniofacial surgeon. Dr. Joseph Petronio is the Pediatric Neurosurgeon. Dr. Petronio also performs services at Scottish Rite. Dr. Wood's office can be reached at (404) 778-4846. If you are shopping for a craniofacial team, you may want to give them a call since you will be in town. We do not know Dr. Burnstein but have heard good things about Scotish Rite Children's Hospital.
Since you will be in town (Atlanta), maybe we can get together. We live about 30 miles south of Atlanta and Mike works in downtown Atlanta. If you would like to get together, drop us an E-Mail and we can make plans. Good luck in your search and your trip to Atlanta. Mike & Robin Hill ========================================================================= Date: Thu, 16 Apr 1998 00:16:01 -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: Hands/Thank you MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii
Hi,
I first wanted to say thanks to both Jenn and Janine for the information on the Tennessee Craniofacial Center. I phoned today after getting the number and they are sending me a copy of Dr. Sargent's book.
Amy was born with her thumbs fused, and three digits sharing the same nail bed - I guess what everyone is referring to as "rosebud" hands. She now has (at almost 6 years old) her thumbs and three fingers on each hand. Every year when we visit the Craniofacial team in Toronto we see the hand specialist there. He had to split bone to make her 'pointer' finger which required graphs from her groin and her big toe (they needed some thicker skin to cover the bone). At the moment the surgeon has indicated that he could seperate the remaining digits to give her four fingers but does not feel that he has enough bone left to split again to give her a good finger tip and thus the function may decrease.
I guess it must be every parents dream to have a healthy child with five fingers and toes! I still yearn for Amy to have five digits but am not willing to take the risk and lose some of the function she already has. I have had a psychiatrist tell me that it would be better for Amy's self esteem to have all five fingers even if it meant loosing some of the function.....sorry...she has lots of self esteem. Our approach at the moment is to look at it year to year. Guess the dream is still there...we are just waiting for technology to catch up. Amy does ask why she doesn't have ten fingers (when she admits to having 8-she often insists she has 10) and has told us outright more than once that she wants 10. I feel pangs of guilt but deep down know that our conservative approach is the right one for us at the moment.
Just my 2 cents worth.
Leanne ========================================================================= Date: Thu, 16 Apr 1998 20:34:59 +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: HANDS Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
> It's a tough decision for me >because I do feel very strongly about it now. You know, you want them to be >as much like everyone else as possible. But on the other hand, if the finger >is going to get in her way, than what good is it?
I think it is important to keep in mind that a finger doesn't just "get in the way", it is actually dangerous to have a digit with no feeling or action. Imagine the chances of catching it in drawers, doors, etc. It could be badly injured and the child may not even know about it. Not nice to say the least!
Ann NZ ========================================================================= Date: Thu, 16 Apr 1998 20:35:01 +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/Thank you Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
>Amy does ask >why she doesn't have ten fingers (when she admits to having 8-she >often insists she has 10) and has told us outright more than once >that she wants 10.
Leanne
My way of getting past the guilt thing when Amy (now 7yrs) says she wants fingers like mine is to pass it back to her along the lines of "Yes, it would be great wouldn't it. Mr Rees could thin them down a bit and give you more separation between the fingers, but you would have to go back into hospital. Do you really want to make a special trip to hospital just for your hands or would you like to wait until he has lots of stuff to do?" and if she still says she would like them done we talk through the process of being in hospital, just how it is, not prettying it up or making it worse then it was. By the end of it Amy has decided she doesn't want to go into hospital after all and doesn't want to spent a couple of weeks with her hands in bandages - SHE has made the decision.
We have only had to do this a couple of times and she hasn't raised the subject for ages. She has had a session in hospital for an operation not related to Apert Syndrome, and tomorrow she is going in to have her grommets put in and a lot of children have that done without having Apert S., so she will have memories of hospital unrelated to her basic structure. I am sure this does help.
Regards Ann NZ ========================================================================= Date: Thu, 16 Apr 1998 08:34:06 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: Jenngram <Jenngram@AOL.COM> Subject: Re: Hands/Thank you Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Thanks to everyone for the ahnd imput. I am going to get Jordnas x-rays today and bring them home so Joe and I can "review" them. From what we could tell by palpation if there is fusion its at the nailbed area. I understand all the problems baout having a functional finger and not doing surgery and losing it b/c of lack of blood supply. I guess right noe our issue we're going through is that is it better to have 4 fingers and 2 thumbs to "appear " normal or is it better to have less and be functional. My personal oppinion is that for te first part of life it may be better to "appear" normal...I think we all know how cruel (and kind at times too) people can be. I would imagine once adulthood is entered it would be easier to deal with. Jordan too has very high self-esteem..thinks hes pretty cool...I am just not sure if this will continue through school and puberty. Of course to us it makes no difference as long as hes happy and healthy. Oh well, another one of those big decisions I never wanted to have to make, and hopefully won't. But we're thinking along these lines os it won't be a shock. Aftere we look at the x-rays we're going to see the doc and review the films w/ him. I'll keep you posted.
Thanks again Jenn(Tampa/St. Pete....yes, its beautiful again!!!!! :) :) ========================================================================= Date: Thu, 16 Apr 1998 10:39:47 -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: hands MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii
Ann,
Your approach sounds great and it is something I will keep in mind. At the moment we are waiting on a surgery date to increase the web space on Amy's right thumb. I haven't discussed this much with Amy as her midface surgery from almost a year ago is still so fresh in her mind. Her kindergarten went on a field trip to a local hospital yesterday and I had to reassure her there would be no needles before she felt comfortable about going. The two things she dwells on about the last surgery are the IV needles and being taken away from me when they had to take the wires out of her mouth. I'm definately asking for some presedatives this next go around! (for her, not me, although it's a thought....!)
When we have a date we will discuss it more with her. Even this surgery is a more difficult decision as all other surgeries have been to give her something she doesn't have....this one is to hopefully improve her range in her grasp.. but because it won't be as dramatic of a change I question putting her through the process. In an effort to combine surgeries, she will also be having a second plastic surgeon straighten the skin around her eyes at the same time. He wasn't able to straighten it as much as he liked during the midface surgery due to swelling. We would like these procedures done before our summer (I'd prefer her hands healed for fun in the sand and water!) but arranging to have both surgeons in the same operating room at the same time causes delays!
Amy doesn't dwell on the differences in her hands, she just brings it up occassionally. This morning her comment was that Mickey mouse has four fingers just like her. When he grows up he is going to have five! Then she is onto something else.
Guess we comfort ourselves with the knowledge that we are all trying to make the best decisions for our children.
Leanne ========================================================================= Date: Thu, 16 Apr 1998 11:35:12 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: Thornq <Thornq@AOL.COM> Subject: Re: Wrong about the Book. Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Beth,
I would love to make you a copy of the book. The copying charges and postage comes to $16.00. I do require one thing in return. I would love a picture of Tim for Andrew's scrapbook. Hope everything is going well for you. Talk to you soon.
Lynn Thornquist 4 Taylor Road Holliston, MA 01746
Lynn ========================================================================= Date: Thu, 16 Apr 1998 12:13:41 -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: ize <ize@TACOMA.CEATLABS.OKSTATE.EDU> Subject: Re: Hands MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Felipe's hands were like a "rosebud". His hands were very bad, as the doctor used to say. His three digits shared the same nail. The doctor first released his thumbs and the pinkies. Then he released his index fingers, because it would have more function. He could use his fingers like tweezers for grasping things. Then he had his rings and middle fingers released. The doctor said that it could be a risky... he could loose one of the fingers. We just thought, if he keeps this two fingers together, Felipe would have three fingers and the thumb on each hand. If he releases this two fingers and the results are not successful, Felipe was going to have three fingers and the thumbs anyway. So we decided to have the surgery done. It was very successful, all his fingers are functional and his hands look very good. Felipe got four fingers and the thumb on each hand before the age of two. Felipe's plastic surgeon is specialist on hands surgeries and besides, he is the head of the plastic surgery at the University of Oklahoma. We were very blessed finding this doctor, he is an excellent professional and friend too.
The Harmon's and the Kilner's Family are always in our thoughts and prayers!
Best wishes to all, The Ize's. ========================================================================= Date: Thu, 16 Apr 1998 14:09:40 -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'S FIRST SURGERY MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit
Hi everyone,
We are one day away from our first surgery. Carmen Rae will have a shunt put in on Friday (the 17th) at 11:00am. Even though this surgery is minor, compared to future surgeries, it is still our first and we have all the anxiety one could imagine.
We met with Carmen's Craniofacial Team yesterday and they are discussing the possibility of moving Carmen's "Cranial Vault Remodeling" or "Frontal Advancement", what ever they want to call it, from July 21st to mid June. Carmen has add real good weight gain and seems very healthy. The doctor's were going to discuss the best route to take and contact us with their recommendations.
Please keep us in your prayers and we hope to be back home on Sunday. We will let you know how everything went.
God Bless All of You, Mike and Robin Hill ========================================================================= Date: Thu, 16 Apr 1998 13:58:01 -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: Laurie Ann Bailey <jkb@ELPASO.NET> Subject: Re: Wrong about the Book. MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Thornq wrote: > And if it possible, I would like those same people to e-mail me and > let me know ahead of time, so I can let the copying place know about how many they will be making.
Hey Lynn,
Laurie Bailey here. I would love a copy of the book. I'll get a check out to you very soon.
My address is:
Laurie Bailey RR 1, Box 74 El Paso, IL 61738 ========================================================================= Date: Thu, 16 Apr 1998 17:29:28 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: Jenngram <Jenngram@AOL.COM> Subject: Re: CARMEN RAE'S FIRST SURGERY Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Just wanted to wish ya'll good luck w/ Carmen Rae's shunt placement. I''m sure all will go well. You'll be in our thoughts.
Jenn(Tampa/St. Pete) ========================================================================= Date: Thu, 16 Apr 1998 17:27:09 -0600 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: baconsmith <bluenose@TELUSPLANET.NET> Subject: Re: Wrong about the Book. Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
Hey, just a thought folks ... if you make yourself an address label for Lyn to send the book, it will lessen the load. Send the label along with your cheque, (that's check!) ... good idea?
Pat > email to: bluenose@telusplanet.net IM: onlypeach shake and shake the ketchup bottle. none will come and then a lot'll ... unknown ========================================================================= Date: Thu, 16 Apr 1998 18:38:08 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: ize <ize@TACOMA.CEATLABS.OKSTATE.EDU> Subject: Re: CARMEN RAE'S FIRST SURGERY MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Hello Mike and Robin,
we want to wish you good luck with Carmen on her surgery and want you to know that we will be sending positive thoughts on your way.
The Ize's. ========================================================================= Date: Thu, 16 Apr 1998 20:06:53 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: Frank & Annette Contrino <contrino@BUFFNET.NET> Subject: Re: hands Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
>Posing a general question....How many of you have experienced a bony fusion >with the fingers? And if so, were they able to create all 4 fingers >regardless? There was some talk w/ our doctor and he made a nonchalant comment
Nicole's middle 3 fingers on both hands were fused. Her left hand was a rosebud configuration while her right hand was a spoon configuration. Her surgeon warned us that he might not be able to get all four fingers, but he would not know until he began operating. He never gave us any indication that it was due to the bones being fused. He did state that the amount of blood vessels, tendons, ligaments and muscle would be the deciding factor. Apparently Nicole was lacking in those areas since she only has three fingers on both hands. We had hoped for the best, but figured it was just a good thing she would be able to use more than just her pinky and thumb. There have been times when I wondered if we shouldn't have done more to see if there was someone else who could have given her all four fingers. I guess the clincher was when her surgeon said "Anyone can tell you they'll get four fingers, but no one can guarantee it". We haven't found anything she cannot do yet. She has no knuckles in the middle of her fingers so she cannot bend them much, but still manages well. She hasn't inquired about her hands at all yet. One advantage we have is that my dad is missing his ring finger on his left hand so it's not like she's the only person in the world with one missing. The only thing I know for sure is that she'll never, in a fit of rage, "flip me the bird" since it is her middle finger which is missing. Gotta find that silver lining somewhere. :-)
Frank Contrino contrino@buffnet.net ========================================================================= Date: Thu, 16 Apr 1998 20:28:01 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: Thornq <Thornq@AOL.COM> Subject: Re: CARMEN RAE'S FIRST SURGERY Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Mike and Robin,
Good luck with tomorrow's surgery, and I will be praying for you. The first is always the worst, but I think they are all bad. The waiting is what always killed me, but around the fifth surgery it doesn't get to me that much. So have faith that it does get better. The more surgeries, the more confidence.
Please let us know how everything went when you get back on Sunday.
Lynn Thornquist ========================================================================= Date: Thu, 16 Apr 1998 20:21:30 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: Frank & Annette Contrino <contrino@BUFFNET.NET> Subject: Re: HANDS Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
> >As far as the hands are concerned, I too am curious about it also. I too was >told that her doctor didn't know about her hands either until he operated. He >also told me that he could get five fingers, but that it might not do her any >good to have a finger that didn't do anything but got in her way because of >the blood supply and nerves and tendons. I, too, would like to know your
As far as "getting in the way goes"... When my dad lost his finger, (jumped off a truck and his wedding ring and finger decided to stay behind) the doctor asked him if he wanted the finger removed completely or not. He explained that it would be best to remove the finger otherwise the stump would be in the way and not be functional. He opted for removal. Several years ago he met a man who had a similar mishap, and did not have it remove, and the one thing the guy complained about was that the stump was in the way and made a lot of things difficult. When the hand surgeon removed Nicole's finger, he removed it all the way into the hand so the other fingers could move together and give her a more functional hand. I presume that's what they all do.
Frank Contrino contrino@buffnet.net ========================================================================= Date: Thu, 16 Apr 1998 20:50:31 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: Thornq <Thornq@AOL.COM> Subject: The Harmons Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Hello everyone,
I am sending this update on BJ for Marjorie. She writes:
Howdy everyone,
Wanted everyone to know that BJ is still in the hospital (Through Friday). He is recovering slowly from his liver surgery and has a new shunt too. He is stable though and is even spending this last week in the hospital on the regular floor. He is starting to regain some use of his muscles and is holding his head up on his own. He is attempting to communciate by using a mayer-Johnson communication board.
He is eating semi solid foods and starting to regain his chewing strength. He is steadily making small improvements. We are very excited about bringing him home this weekend. The road ahead will be a long and rocky one and he is still very ill but he is continuing to wow and amaze us all.
Marjorie Harmon ========================================================================= Date: Thu, 16 Apr 1998 22:10:55 -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: Hands MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Hi everyone,
I just want to give our input on the hand issue. Nicole has all five nails on each hand, her pinkies are attached by a thin webbed like skin and they have nuckles because she is able to bend them. The other fingers do not have nuckles therefore she is not able to bend those.
Her surgeon said that when she preforms the first surgery on her hands she will separate the pinkies and index fingers and will try to staighten her thumbs which are bent but are separate. The fingers which are worst off are her middle and ring fingers. Those two are fused together at the top. The doctor said she rather wait a bit before she tries to tackle them to see if as Nicki grows there is more bone growth therefore making it easier to try and get two fingers.
If she is not able to get two fingers, I think our desicion will be to leave them stuck together. At least you can plainly see that there are two fingers because there are two nails and lines where the divisions should have been but they are just stuck together. So in esence she will have four fingers on each hand but just one fatter one with two nails. And who knows with science improving and more discoveries occuring yearly maybe years from now they will be able to separate them and at least they were saved and she would still have them to separate. (I don't know maybe I'm dreaming, but really and truly I feel at times that I am dreaming and that one day I'll wake up and Nicki won't have Aperts and Nicki won't need all these surgeries) But then I do snap myself out of it and realize that I must stay strong and focus and do nothing but move ahead and know that we must do the very best we can for our child.
I apologize for my rambeling but my nerves just have me all wound up. I know that once we pass this first surgery I can relax a bit and not be so uptight.
I want to let the Hills know that Carmen Rae will be in our prayers and we hope that everything turns out well, which I'm sure it will.
Very happy to hear about B.J. as always he is in our thoughts and prayers. Start preparing those welcome home signs.....
Best wishes to all....
Raquel jara1@bellsouth.net ========================================================================= Date: Fri, 17 Apr 1998 22:03:51 +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: CARMEN RAE'S FIRST SURGERY Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
Every best wish for a relatively-stress-free time in hospital Mike and Robin, and all others in or due to go in, and a happy return home.
Amy finally had her grommet operation at 4.30pm today, having been hanging around since 1.00pm - when it was her turn around 3.00pm the anaesthetist decided she needed EMLA so he could put a needle in her hand just in case, so that caused us another 1+1/2hr delay!!! I had noted on her admitting form that she had Apert Syndrome so he would have advance warning - pity he didn't read the form until the last minute.
From the time I left her asleep in theatre to the time I was back with her in recovery was less than 15 minutes. I wonder if anyone has ever costed the time of parents spent waiting for ops or waiting at clinics!
Still, all over now and the girl is still bubbling around despite the fact that it is now 2 hours past her normal bed time.
Cheers, Ann NZ ========================================================================= Date: Fri, 17 Apr 1998 22:03:57 +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: HANDS Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
Frank, you have just reminded me that back in 1990 (just when I found out I was pregnant with Amy) I was doing a women's woodworking and carpentry course and one of our tutors had only three fingers on one hand. It took me a while to notice there was a difference, and then it took a bit longer to figure out just what the difference was, and her surgeon had done what Nicole's surgeon has done - the hand was very neat and tidy, and it certainly was not immediately obvious a finger was missing.
Two of my brothers who have been carpenters at some stage in their lives are both missing finger bits (circular saw accidents - they aren't the most safety conscious people I know). One is missing most of his wedding ring finger, just the stub remains, and the other is missing the tip of one finger and nearly lost the tip of another. When we get together with them, particularly if a friend of my sister is present who has had one of his fingers removed, Amy is well aware she isn't the only one with hand differences!
Regards, Ann NZ
>that the stump was in the way and made a lot of things difficult. When the >hand surgeon removed Nicole's finger, he removed it all the way into the >hand so the other fingers could move together and give her a more functional >hand. I presume that's what they all do. > >Frank Contrino >contrino@buffnet.net > > ========================================================================= Date: Fri, 17 Apr 1998 07:55:22 +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> From: "J. G. Lindamood" <chanan8@JUNO.COM>
Hello Family!
My best wishes and thoughts go to Carmen. I hope her experence is a good one. Congratulations to amy on a successful ear surgery. Hope this clears up thehearing problems!
I should know today about either job possibility. I will let you know.
Joanne, pouring down rain in Ohio.
_____________________________________________________________________ You don't need to buy Internet access to use free Internet e-mail. Get completely free e-mail from Juno at http://www.juno.com Or call Juno at (800) 654-JUNO [654-5866] ========================================================================= Date: Fri, 17 Apr 1998 09:03:31 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: Jenngram <Jenngram@AOL.COM> Subject: Re: CARMEN RAE'S FIRST SURGERY Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Ann,
Glad to hear Amy's surgery wnt off without too many hitches. I always wonder how these little people can get away w/ such little sleep, so much stress and still have a smile on their faces..when me, as an adult would be cursing the world. hmmmm.The world of pediatrics never ceases to amaze me.
Jenn(Tampa/St. Pete) ========================================================================= Date: Fri, 17 Apr 1998 10:00:50 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Carbide Tech <ruth@CARBIDETECH.COM> Subject: Kris Contreras MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit
Hello to everyone out there.
First let me introduce myself, My name is Ruth, my husbands name is Joe we live near the Houston, Tx. area. Our daughter, "Kris" is 14 years old. And like most of you that I've been reading of, have Apert's Syndrome. She is very delightful! Of course, that's what any proud mom would say, Huh? She has had 19 surgeries, 4 cranio, hands,( which by the way, we're almost completed) cleft palate repaired, and of course other "stuff" that I'm sure most of you know by now. This is the first time that we join any type of "groups or organizations" for Kris. We have learned to take the pain of seeing your daughter go thru surgery after surgery, I Thank God for family and friends who have always been there for us and of course, We thank God for being there with us. We have a very strong faith in God that has sustained us, because if you don't you can go crazy. We are getting ready for her "quinceanera" which for a young lady means she will have like a "coming out" party. Very traditional for a Mexican- American Senorita. Although here lately it's more like a wedding! I don't know if any one has heard of these celebrations, but they go all out. She will be having hers next year only because, this year she will be having a cranio surgery in June and her 15th birthday is in July 2. So we sure don't want to have this quinceanera with her hair short and here "bruised". She can't wait though, because her cousin just had one in November '97. It was just beautiful! And Kris was one of her attendants. Kris looked absolutely gorgeous. There's my Momma pride going again. Well, I better stop now, I have alot to say. But I would like to hear from you, I feel like we are family. You can contact me directly if you'd like. Ruth@CarbideTech.com. Hasta la vista, amigos! I am here only from 9am-2pm ========================================================================= Date: Fri, 17 Apr 1998 12:14:01 -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: Lisa McGahan <wmcgahan@IX.NETCOM.COM> Subject: Re: CARMEN RAE'S FIRST SURGERY MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit
by now the surgery is over for carmen. we hope she did well and you and mike are ok too. our best - lisa and morgan
---------- > From: ROBIN L HILL <CARMENRAE@PRODIGY.NET> > To: APERT@LISTSERV.AOL.COM > Subject: CARMEN RAE'S FIRST SURGERY > Date: Thursday, April 16, 1998 2:09 PM > > Hi everyone, > > We are one day away from our first surgery. Carmen Rae will have a shunt > put in on Friday (the 17th) at 11:00am. Even though this surgery is minor, > compared to future surgeries, it is still our first and we have all the > anxiety one could imagine. > > We met with Carmen's Craniofacial Team yesterday and they are discussing > the possibility of moving Carmen's "Cranial Vault Remodeling" or "Frontal > Advancement", what ever they want to call it, from July 21st to mid June. > Carmen has add real good weight gain and seems very healthy. The doctor's > were going to discuss the best route to take and contact us with their > recommendations. > > Please keep us in your prayers and we hope to be back home on Sunday. We > will let you know how everything went. > > God Bless All of You, Mike and Robin Hill ========================================================================= Date: Fri, 17 Apr 1998 13:57:05 -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: Thomas Troudt <ttroudt@SPRYNET.COM> Subject: Re: Wrong about the Book. MIME-Version: 1.0 Content-Type: text/plain; charset="iso-8859-1" Content-Transfer-Encoding: 7bit
Lynn, I would love to have a copy of the book. I will send a check and an address label in the mail soon. Thanks again, -----Original Message-----Diana From: Thornq <Thornq@AOL.COM> To: APERT@LISTSERV.AOL.COM <APERT@LISTSERV.AOL.COM> Date: Tuesday, April 14, 1998 6:59 PM Subject: Wrong about the Book.
>This is a message to everyone: > >Unfortunately, I have to admit that I believe that Don Sears is right. Also >Dr. Upton has his head you know where. When he told me that he bought 20 >books and handed them out to his patients, he was talking 4 years ago he >bought them. I was under the impression that he got them more recently than >that. Which brings me to my upsetting news to everyone out there. I am >unable to get my hands on the "actual book". Dr. Upton did give me his book >to make copies. So I am offering my services to get anyone who wants a >duplicated copy of the book, I will get it for them. But there is a catch. >In order to have the copy done well, it will be $22.00 to have it copied. > >So I am now compiling a new list of people who would like a copy. So if you >are one of those people, please mail the copying charges and enclose your >address. And if it possible, I would like those same people to e-mail me and >let me know ahead of time, so I can let the copying place know about how many >they will be making. > >I am sorry for the misleading information and I know that alot of you got real >excited, and I wish I didn't have to let you down, but I have no other choice >in the matter. I will continue to keep searching, but I have tried many >medical libraries, the publishers representatives and many others. I am going >to call W.B. Saunders and see if they would reprint if the actual editor asked >them to and if we have enough people who want it. Just to let you know, >inside the book it states that the book costs $125.00 each copy. I don't know >about the rest of you, but that's alot of money for us. > >Sorry again, and let me know how many copies. > >Lynn Thornquist ========================================================================= Date: Fri, 17 Apr 1998 16:34:10 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: GSieb91515 <GSieb91515@AOL.COM> Subject: Re: CARMEN RAE'S FIRST SURGERY Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Robin and Mike-
It is past 11:00 a.m and I just read your post regarding Carmen Rae's shunt surgery. We wish you all the best for a healthy recovery.
Brenda Siebert ========================================================================= Date: Fri, 17 Apr 1998 16:39:30 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: Yonstein <Yonstein@AOL.COM> Subject: Re: Kris Contreras Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Welcome, Ruth, Joe and Kris. My name is Janine Krebs and my husband is Brian. We have two children, Nicholas, 3 and a half and Emily, almost 9 months, who has Aperts. She has had two surgeries and is scheduled for her cleft palate repair on May 22nd.
I am sure you will find this as wonderful a place as I have. Maybe we could pick your brain for some questions we have that you have already been through with Kris. Hope all is well.
Janine Krebs (NY) ========================================================================= Date: Fri, 17 Apr 1998 16:42:18 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: Yonstein <Yonstein@AOL.COM> Subject: Well wishes Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Ann: Glad to hear that Amy came through her surgery ok and is doing so well.
Mike and Robin: By now Carmen Rae's surgery is over, and I am sending prayers that she did ok and you both are fine. I am sure it all went well.
To the Harmon family: Congrats on bringing BJ home. I am so glad to hear he is doing well.
Joanne: Good luck with the job.
Hope everyone else is well.
Janine Krebs (in rainy NY) ========================================================================= Date: Fri, 17 Apr 1998 15:58:35 -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: "D. Jefferson" <djeff@MIDWEST.NET> Subject: Re: APERT Digest - 15 Apr 1998 to 16 Apr 1998 (#1998-52) MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit
Friends, This is just a test!!
Since I started getting the digest I haven't figured out how to send messages to the whole group.
Maybe this will work.
Dori
djeff@midwest.net ========================================================================= Date: Fri, 17 Apr 1998 20:03:12 -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"
Glad to hear that BJ is doing good it has been along hard road for a great kid.As always our prayers are with him and his family.
Hope all went well for Carmen and her first surgery,I am also glad that everything went well for Amy and her tubes. I hope I didn't forget anyone.
Thoughts are still with the Kilners. Best wishes again to Sarah and Jonathan hope you are both healing nicely.
Karen(PA) ========================================================================= Date: Fri, 17 Apr 1998 20:34:34 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: Patbrat718 <Patbrat718@AOL.COM> Subject: Introducing Jasmyn Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Hello everyone,
My name is Patti. I have a 9 year old daughter Jasmyn, who has Aperts. Jasmyn is treated at Loma Linda Hospital in California. She has had 1 craniofacial, 1 soft palate repair, and 6 hand and feet surgeries. And of course we throw in the PE Tubes whenever we can. We expect that she will be having another cranio this summer. Jasmyn is in the fourth grade, doing well. She is in Camp Fire and Baseball as well as an avid hiker. As I am sure each of you have found, there just isn't much that stops these little tikes.....least of all Aperts. At this age she is moving into that boy/girl awareness and its painful for her at times. Her positive attitude is a constant encouragement though.
She was so thrilled to be able to browse through Teeter's Page and get to see so many children that look just like her! She does have a couple of friends here with Aperts, but still the world is so big....and I guess she really just had no idea. She says that the best thing about having Aperts is that she is special and different from everyone else. She says the worst thing about having Aperts is that she IS different from everyone else.
Jasmyn has an older brother Daniel (17) who pivots back and forth between "Mom, she's driving me crazy" to "Sometimes I can't believe how much I love her ." I think thats how it usually goes.
Jasmyn's Dad and I are divorced. He now lives in Georgia but still is very much a part of her life. To be honest, I think it has taken us this long just to heal from the shock and trauma of that which we never expected. I can still here myself saying, "God, do anything to me, but don't do this to my little girl." Oh if I had only known then what I know now. What a blessing she has been. She has touched so many lives.
We all are so excited about hearing from all of you out there and getting to share your experiences too. We hope your as glad to have us in the family as we are to be here. Don't be surprised if Jasmyn pops on all by herself now and again. Usually when she has a question or comment, she jumps right in....and we are usually the one's dragging behind! ========================================================================= Date: Fri, 17 Apr 1998 21:04:49 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: GSieb91515 <GSieb91515@AOL.COM> Subject: Re: Hands Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Raquel - I too have those passing moments where I drift into a moment of thinking I'm in a dream and when I wake up Jonathan will be ok and not have anymore surgeries. I then come back to reality and breathe a little deeper and take a few more baby steps forward. Lot's of baby steps will get us through these difficult times of surgeries and frustrations. You are so lucky that Nicole has a finger she can bend. I have not heard of this from anyone else. Does anyone else's children have joints in their fingers?
Ann - So glad to here Amy came through with flying colors. It sounds like it didn't slow her down a bit.
Best wishes for BJ's home coming this weekend.
Brenda Houston ========================================================================= Date: Fri, 17 Apr 1998 20:10:31 -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: welcome kris & jasmyn MIME-version: 1.0 Content-type: text/plain; charset="us-ascii"
WELCOME!!! Nice to have more added to our family. It is a great thing for us to have you guys that are veterans in dealing with all of these issues. I know we will all have questions for you as they arise. Hope everyone will enjoy this listserv as much as I do!
Carmon, hope you did good in your first surgery. I am afraid I can't remember everyone so I will just say that I hope everyone is doing great after their most recent surgeries!! God Bless!!
Denise Graham(son, Daryl Graham) ========================================================================= Date: Fri, 17 Apr 1998 22:12:02 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: Thornq <Thornq@AOL.COM> Subject: Re: Introducing Jasmyn Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Welcome to Patti and Jasmyn!!!!
I hope you find this family as wonderful as I have. It was very hard to try and find people who understand what I'm going through and it is great to have everyone here on the listserv to just listen or answer questions. We are always excited when we meet new people on here.
Let me give you a little information about us.
My name is Lynn, my husband is Rich and our son Andrew was born with Apert on 9/5/96. We are still new at this Apert thing and have many questions. Andrew has had two cranial surgeries, one plate removal surgery, and two hand surgeries. He has also had one minor surgery on his feet to remove ingrown toenails. The next surgeries we will face is when his fingers will be thinned down. That is not until he is 3 years old. The next major surgery is when he is 7 or 8 and at that time they will fix his eye sockets. Andrew does not have the typical midface problems. I believe his head was one of the worst, but his doctors worked wonders and now you can barely tell he has Apert, except for his hands.
Andrew is a very active little boy and loves everyone he meets. He is fun loving, happy, and extremely cute (mom's biased). I would like to know about Jasmyn's feet surgeries. We are looking to have Andrew's toes separated when he is 4 or 5. Our doctor has told us that it won't be a problem, but I would love more input on it.
Well, I better go and finish getting all this e-mail (I love getting it). Talk to you real soon, and tell Jasmyn that she is welcome here anytime.
Lynn Thornquist Thornq@aol.com ========================================================================= Date: Fri, 17 Apr 1998 22:23:31 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: Thornq <Thornq@AOL.COM> Subject: Re: CARMEN RAE'S FIRST SURGERY Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Ann,
What is grommet operation?
Lynn ========================================================================= Date: Fri, 17 Apr 1998 22:35:58 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: Thornq <Thornq@AOL.COM> Subject: Re: Kris Contreras Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Hello to the Contreras family!!!!!
Welcome to our family. I'm so glad that you have joined us. I have found this to be my support and my strength. It is really nice to know that loving people are out there that really do care. Not only do they care, but they understand what we're going through. Let me introduce myself a little.
My name is Lynn, my husband, Rich, and our son Andrew. Andrew has Apert as well. He was born on 9/5/96. He has had 2 cranial surgeries, one plate removal, and two hand surgeries. One little toenail surgery. His next surgeries will be when he is 3, thinning of fingers; 4 or 5, toe separation; and 7, eye sockets fixed. Of course I'm sure that there will be plenty of little ones in the middle there, but that is all the big surgeries that are scheduled. But as we all know, that is not always true. Andrew is a very happy little boy and has been in Early Intervention since he was three weeks old. His speech is a little delayed, but other than that, everything is on time. His first surgery was when he was 3 months old. They rebuilt the back of his skull. All of Andrew's sutures were fused except for the top. So his head grew up and down. But looking at Andrew now, you couldn't really tell he has Apert except for his hands.
Welcome, again, to our family and tell Kris that she is welcome to chat with us anytime.
Lynn Thornquist Thornq@aol.com ========================================================================= Date: Fri, 17 Apr 1998 22:58:59 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: Thornq <Thornq@AOL.COM> Subject: Just a little something!! Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Here are some little stories that may put a smile on your face. I received them from my sister-in-law and wanted to share them with you all. My friend said that she has heard them in an inspirational book she has. Here it goes.....
"The Most Caring Child"
Author and lecturer Leo Buscaglia once talked about a contest he was asked to judge. The purpose of the ocntest was to find the most caring child. The winner was a four year old child whose next door neighbor was an elderly gentleman who had recently lost his wife. Upon seeing the man cry, the little boy went into the old gentleman's yard, climbed onto his lap, and just sat there. When his mother asked him what he had said ot the neighbor, the little boy said, "Nothing....I just helped him cry."
'Two Nickels and Five Pennies"
When an ice cream sundae cost much less, a boy entered a coffee shop and sat at a table. A waitress put a glass of water in front of him. "How much is an ice cream sundae?" "Fifty cents,' replied the waitress. The little boy pulled his hand out of his pocket and studies a number of coins in it. "How much is a dish of plain ice cream?", he inquired. Some people were now waiting for a table, and the waitress was impatient. "Thirty-five cents", she said angrily. The little boy again counted the coins. "I'll have the plain ice cream." The waitress brought the ice cream and walked away. The boy finished, paid the cashier, and departed. When the waitress cam back, she swallowed hard at what she saw. There, placed neatly beside the empty dish, were tow nickels and five pennies --- her tip.
"The Golden Gift"
Some time ago, a friend of mine punished his 3 year old daughter for wasting a roll of gold wrapping paper. Money was tight, and he bacame infuraited when the child tried to decorate a box to put under the tree. Nevertheless, the little girl brought the gift ot her father the next morning and said, "This is for you, Daddy." He was embarrassed by his earlier overreaction, but his anger flared again when he found that the box was empty. He yelled at her, "Don't you know that when you give someone a present, there's supposed to be something inside of it?" The little girl looked up at him with tears in here eyes and said, "Oh, Daddy, it's not empty. I blew kissed into the box. All for you, Daddy." The father was crushed. He put his arms around his little girl, and he begged for forgiveness. My friend told me that he kept that gold box by his bed for years. Whenevery he was discouraged he would take out an imaginary kiss and remember the love of the child who had put it there. In a very real sense, each of us as parents has been given a gold container filled with unconditional love and kisses from our children. There is no more precious possession anyone could hold.
"Barney"
A four year old was at the pediatrician for a check up. As the doctor looked down her ears with an otoscope, he asked, "Do you think I'll find Big Bird in here?" The little girl stayed silent. Next, the doctor took a tongue depressor and looked down her throat. He asked, "Do you think I'll find the Cookie Monster down there?" Again, the little girl stayed silent. Then the doctor put a stethoscope to her chest. As he listened to her heart beat, he asked, "Do you think I'll hear Barney in here?" "Oh, no!" the little girl replied. "Jesus is in my heart. Barney's on my underpants."
"Discouraged"
As I was driving home from work one day, I stopped to watch a local Little League baseball game that was being played in a park near my home. As I sat down behind the bench on the first-baseline, I asked one of the boys what the score was. "We're behind 14 to nothing," he answered with a smile. "Really," I said. "I have to say you don't look very discouraged." "Discouraged?" the boy asked with a puzzled look on his face. "Why should we be discouraged? We haven't been up to bat yet."
"Roles And How We Play Them"
Whenever I'm disappointed with my spot in life, I stop and think about little Jamie Scott. Jaime was trying out for a part in a school play. His mother told me that he'd set his heart on being in it, though she feared he would not be chosen. On the day the parts were awarded, I went with her to collect him after school. Jaime rushed up to her, eyes shining with pride and excitement. "Guess what Mum," he shouted, and then said those words that will remain a lesson to me: "I've been chosen to clap and cheer!"
Just thought everyone would enjoy those. Kind of makes you think doesn't it?
Talk to you all later.
Lynn Thornquist ========================================================================= Date: Fri, 17 Apr 1998 21:06:53 -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: immediate action needed MIME-version: 1.0 Content-type: text/plain; charset="us-ascii"
I just received this information today. After you read this and feel that you need to help take action for the ADA Americans Disibility Act and our children, please contact your local representative or senator. THANKS!!
DENISE GRAHAM
HOUSE VOTE TO STRIP JUDICIARY OF REMEDIES IMMINENT
Americans with Disabilities Act and Court Orders on Mental Health, Special Education and Child Welfare Systems Threatened
April 17, 1998--The House of Representatives is about to consider a bill, H.R. 1252, that would virtually prohibit judges from issuing orders against a state or local government where the remedy could result in a tax increase.
The bill is known as the "Judiciary Reform Act of 1998." However, it is anything but reform. It contains deceptively technical language but its provisions have the potential to devastate the Americans with Disabilities Act (ADA) and the various court- ordered reforms of state systems.
Vote Is Likely April 23
H.R. 1252 was approved by the House Judiciary Committee on March 24. It is likely to be brought to the House floor on Thurdsay, April 23.
The worst provision would prevent federal district judges from issuing orders that could "require" a state or locality to raise taxes in order to remedy constitutional and statutory violations. Judges could issue such orders only if they were able to justify them by making a series of difficult findings.
The additional burden this would impose on the judiciary could endanger remedies in cases involving:
* access to public services and transportation under the ADA,
* appropriate educational services under the Individuals with Disabilities Education Act (IDEA), and
* safe and sanitary institutions and access to community-based services for people with mental disabilities.
Judges Would Be Severely Limited
H.R. 1252 would make it extremely difficult to get remedies like those ordered by courts in the following cases:
* Wyatt v. Poundstone, which required Alabama to operate safe, sanitary facilities for individuals with mental disabilities and create needed community-based services.
* Helen L. v. Didario, which required the state of Pennsylvania to provide attendant care services to a woman with a disability instead of segregating her in a nursing home.
* Mills v. District of Columbia Public Schools, which required that children with disabilities receive a free appropriate education.
Action Needed Now!
Contact your Representative (see the target list below these individuals are considered to be critically important swing votes).
Urge your Representastive to vote against HR 1252 when it comes before the House.
* Phone: call the U.S. Capitol switchboard, 202/224-3121, and ask for the member s office.
* E-mail: go to the Internet site http://congress.org/elecmail.html, select the name of the Senator you wish to contact and type your message in the e-mail form that pops up.
Please help spread the word, too, by copying and disseminating this Action Alert.
Representatives Who May Be Key Swing Votes on H.R. 1252
Baesler, Scotty (D-KY) Barcia, James (D-MJ) Berry, Marion (D-AR) Bishop, Sanford (D-GA) Blagojevich, Rod (D-IL) Borski, Robert (D-PA) Boswell, Leonard (D-IA) Boyd, F. Allen, Jr. (D-FL) Clement, Bob (D-TN) Condit, Gary (D-CA) Costello, Jerry (D-IL) Cramer, Robert, Jr. (D-AL) Danner, Pat (D-MO) Davis, Jim (D-FL) Dooley, Calvin (D-CA) Doyle, Mike (D-PA) Edwards, Chet (D-TX) Fazio, Vic (D-CA) Frost, Martin (D-TX) Goode, Virgil H., Jr. (D-VA) Gordon, Bart (D-TN) Hall, Ralph (D-TX) Hamilton, Lee (D-IN) Holden, Tim (D-PA) John, Chris (D-LA) Kildee, Dale (D-MI) Kind, Ronald (D-WI) Kleczka, Jerry (D-WI) Klink, Ron (D-PA) LaFalce, John (D-NY) Lipinski, William (D-JL) Martinez, Matthew (D-CA) Mascara, Frank (D-PA) McIntyre, Mike (D-NC) Minge, David (D-MN) Mollohan, Alan (D-WV) Oberstar, James (D-MN) Ortiz, Solomon (D-TX) Peterson, Cohn (D-MN) Pickett, Owen (D-VA) Poshard, Glenn (D-IL) Roemer, Tim (D-IN) Sandlin, Max (D-TX) Sisisky, Norman (D-VA) Skelton, Ike (D-MO) Stenholm, Charles (D-TXY Tanner, John (D-TN) Taylor, Gene (D-MS) Thurman, Karen (D-FL) Traficant, James (D-OH) Turner, Jim (D-TX) Bass, Charles (R-NH) Bilbray, Brian (R-CA) Boehlert, Sherwood (R-NY) Campbell, Tom (R-CA) Castle, Michael (R-DE) Davis, Tom (R-VA) Ehlers, Vernon (R-MI) Ehrlich, Robert (R-MD) English, Phil (R-PA) Fawell, Harris (R-JL) Forbes, Michael (R-NY) Fox, Jon (R-PA) Franks, Bob (R-NJ) Frelinghuysen, Rod. (R-NJ) Gilchrest, Wayne (R-MD) Gilman, Benjamin (R-NY) Greenwood, Jim (R-PA) Hobson, David (R-OH) Horn, Steve (R-CA) Houghton, Amo (R-NY) Johnson, Nancy (R-CT) Kelly, Sue (R-NY) King, Peter (R-NY) Klug, Scott (R-WI) LaTourette, Steven (R-OH) Lazio, Rick (R-NY) Leach, Jim (R-IA) LoBiondo, Frank (R-NJ) Miller, Dan (R-FL) Morella, Constance (R-MD) Pappas, Michael (R-NJ) Porter, John (R-IL) Portman, Rob (R-OH) Pryce, Deborah (R-OH) Quinn, Jack (R-NY) Ramstad, Jim (R-MN) Regula, Ralph (R-OH) Roukema, Marge (R-NJ) Sanford, Mark (R-SC) Saxton, Jim (R-NJ) Shays, Christopher (R-CT) Smith, Christopher (R-NJ) Upton, Fred (R-MI) Walsh, James (R-NY) Weldon, Curt (R-PA) ========================================================================= Date: Fri, 17 Apr 1998 20:09:24 -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: Jose sanchez <juliuscsr@EARTHLINK.NET> Organization: none Subject: Re: Introducing Jasmyn MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Welcome patty and Jasmyn,
Hi My name is Chip and I also go to Loma Linda University Medical Center, I don't have Aperts but I do have Craniofacial defects. I sustained a gunshot wound to the face. My last craniofacial surgery was on Feb.12.1998 My next surgery will be sometime in the summer also.
you are really going to enjoy the Apert Crowd they are a wonderful and helpful group. If you have any questions don't hesitate to ask.
We probably have some of the same doctors.
Chip Sanchez ========================================================================= Date: Fri, 17 Apr 1998 23:25:27 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: Patbrat718 <Patbrat718@AOL.COM> Subject: Re: Introducing Jasmyn Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Hey Chip,
Thats great to have someone so close. Jasmyn is seen by the cranio-facial clinic and then some. Jasmyn was the first baby with Aperts that Dr. Hardesty had operated on. Thanks for the welcome and I can see already that this is a warm place to be! ========================================================================= Date: Fri, 17 Apr 1998 23:28:26 -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: Picture request MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii
Hi everyone,
Whenever Amy and I meet someone else who has Apert's I usually ask if they mind having their picture taken with Amy for her album. After mailing a cheque to Lynn today and enclosing a picture of Amy for Andrew's album it occured to me that it might be fun to do a "picture exchange". I know that many of you have pictures on Teeter's page but I still enjoy snail mail!
So anyone who is interested if you mail us a picture we will mail you one back in return! I will probably wait to have the pictures that are in the camera at the moment developed as I took some last night that have Amy with a huge grin on her first two wheel bike.
Our address is:
The Macleans (Leanne, Don, Dylan and Amy) R.R.#2, Site 4, Box 35 Onoway, Alberta Canada T0E 1V0
Hope to have some takers, Leanne ========================================================================= Date: Sat, 18 Apr 1998 00:04:26 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: Patbrat718 <Patbrat718@AOL.COM> Subject: Re: Introducing Jasmyn Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Lynn, Rich and Andrew,
I'm loving this already. Andrew sounds like a doll. I haven't met an Apert baby yet though that hasn't stolen my heart immediately. I may be biased myself.
Jasmyn's feet are a work in progress. Her hands were done by Dr. Virchel Wood. When she was wee little we asked about doing her feet. He was really against it and felt that the benefit that she would receive vs. the difficulty of the procedure wasn't a fair trade. We worked on him for quite awhile but he held fast. It was Jasmyn that convinced him to do it. Poor man.
She has had a "toe surgery" on the right foot. Spliting the fourth and fifth toe as well as the first and second (3 toes so far). It has been 1 year since her surgery. In the next set, he will do the same to the left foot. The original plan was to do the left foot as well as complete the right for five toes. She hasn't had much curling because he did put pins in the large toes for the first few weeks. What I have noticed the most is that because the toes are freed, she now positions her foot differently when she walks....more on the side. This is a bit of a problem in itself for Jazz because none of her joints, including her ankles are very strong. I don't know at this point whether we will pursue five toes or not. The most prominent benefit has been that the toenails don't bother her anymore and that was always a major battle. Since we have a few friends already that are at different levels of surgery, the thing I notice the most is that even though all children with Aperts are very much the same, each one is different. Dr. Wood did the same surgery on another little boy we know, but he has gone all the way through (5 on each). His little toe tends to curl under, but he and his family are very happy having toes. Jasmyn says that she likes the un-cut foot better. She hates the sensation of things going between her toes (like string). Another one of those things I have taken for granted that is completely alien to her. Had she had the surgery as an infant, I am sure the foreign sensation wouldn't be an issue. We do the best we can as we go. Hope this helps.
Patti Patbrat718@aol.com ========================================================================= Date: Sat, 18 Apr 1998 07:08:41 -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: Mark Smith <dsprado@PENN.COM> Subject: Question MIME-Version: 1.0 Content-Type: text/plain; charset="iso-8859-1" Content-Transfer-Encoding: 7bit
Hello Family,
Yesterday I took Kayla to her CCF appointment. She is know 7 years old. The surgeon we see and the speech pathologist felt Kayla has a Cleft palate. He set the surgery date for 28 April, but buy time I got back home which is a three hour drive he wanted to move it up to 22 April, which is no problem for me. My question to all of you is have you ever heard of anyone waiting until they are 7 to do this type of surgery. It must be a small opening b/c they never really seem to think she had one before, we saw different doctor then. I have been seeing these doctor for a year. I always wondered if she had a cleft palate. Can anyone tell me what to except after surgery, eating, drinking etc....... Any comments would be welcome for the surgery is on WED.
Thank You in Advance.
Michele mlsmith@penn.com ========================================================================= Date: Sat, 18 Apr 1998 12:16:20 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: Jenngram <Jenngram@AOL.COM> Subject: Re: new families Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
I just wwanted to welcome our two new families. My name Is Jennifer Graham, husband Joe, and my son is 7 month old Jordan. He's had one cranial/oribital surgery w/ release of the thumbs scheduled for May 8.
I am sure you will enjoy this place as much as we have
Jenn (Tampa/St. Pete) ========================================================================= Date: Sat, 18 Apr 1998 12:18:02 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: Jenngram <Jenngram@AOL.COM> Subject: Re: Picture request Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Leanne,
do you know postage requirements from the US to Canada?
Jenn ========================================================================= Date: Sat, 18 Apr 1998 12:23:05 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: Camous <Camous@AOL.COM> Subject: Re: drooling and feeding Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
In a message dated 4/8/1998 7:56:17 AM Pacific Daylight Time, coljones@PTDPROLOG.NET writes:
<< Oh yeah, he still has not had the cleft palate repair yet because of illnesses when surgery is scheduled. >> Sorry, I'm kind of late catching up with my email after the hubub of Easter and such! Evan used to be a lot mor "gaggy" prior to his clegt palate surgery. Between that and the "stupid human trick" of extruding food and liquid out his nose , mealtimes were often an adventure! Since the cleft palate repair, all this has just about ended. We also had to postpone this several times due to illness and the urgent need for another cranial advancement but the outcome was certianly worth the wait!!
Marianne San Carlos, CA ========================================================================= Date: Sat, 18 Apr 1998 10:35:49 -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: Question Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
Hi Michelle, I wonder if her doctors are talking about a sub-mucous cleft -- sub being under and mucous being the mucosa or skin -- a cleft that is in the muscle of the soft palate but hidden beneath the skin.
Just a thought.
I am guessing here because most cleft affected children have surgery for this kind of thing around the age of one year (or in some cases by about 18 months). The submucous cleft sometimes is not found until the child is learning to speak and has trouble with certain sounds because that muscle is not working for them. So that is the only thing I can think of that would cause them to wait to do the surgery is because it hasn't been discovered yet.
Anyway. I am not a doctor, just a parent who has been thru palate repair with my daughter, although it was some time ago. You can see my little girl's pix at www.widesmiles.org/gallery/Peach or Peach.html or something like that
Surgery itself won't be that long ... about 90 minutes roughly. After care will likely involve a very soft food diet for 10 days to three weeks to allow the sutures to heal. The docs may ask Kayla to refrain from sucking anything because sucking puts pressure on the muscle and the tissues. As an infant, my daughter had also a clear water rinse after each meal to cleanse the inside of her mouth to help healing.
Soreness will be present for Kayla (obviously). My duaghter was just ten months old, but we were advised to give her tylenol (we didnt' use the codiene stuff, just the regular tylenol) about 15 to 20 minutes before we fed her to reduce the pain.
I can't think of anything moer to share with you ... hope the surgery goes well and things heal for Kayla quickly.
If you have any other questions I'll be happy to help if I can.
Pat in Calgary (mom to the Peach, nearly five! Tessier facial cleft)
>Hello Family, > >Yesterday I took Kayla to her CCF appointment. She is know 7 years old. >The surgeon we see and the speech pathologist felt Kayla has a Cleft palate. >He set the surgery date for 28 April, but buy time I got back home which is >a three hour drive he wanted to move it up to 22 April, which is no problem >for me. My question to all of you is have you ever heard of anyone waiting >until they are 7 to do this type of surgery. It must be a small opening >b/c they never really seem to think she had one before, we saw different >doctor then. I have been seeing these doctor for a year. I always wondered >if she had a cleft palate. Can anyone tell me what to except after >surgery, eating, drinking etc....... Any comments would be welcome for >the surgery is on WED. > >Thank You in Advance. > >Michele >mlsmith@penn.com > > email to: bluenose@telusplanet.net IM: onlypeach shake and shake the ketchup bottle. none will come and then a lot'll ... unknown ========================================================================= Date: Sat, 18 Apr 1998 12:35:44 -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: interesting morning MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit
Hi everyone, Thought some of you could use a chuckle today so I will share my morning with you.
I was real tired this morning so I decided to stay in bed a little longer than usual. I heard Nick, my soon to be eight year old get out of bed at about nine. I heard him move the chair over to the cereal cabinet so I knew that he was making himself some breakfast. No problem, so I dozed back off for about a half hour. When I finally got out of bed, I stumbled into the kitchen to get the coffee pot going. Nick says "Mom, I made you some coffee." I looked at the counter and it was covered with wet paper towels, the coffee pot was in the off postion but the pot was full of tinted water, I said 'Oh my God" I pulled the filter holder out, he had put in a filter but put the coffee in the top where the water goes in. What a mess. As I am trying to clean up this mess, Nick says Mom I did your dishes for you too. I looked at the dish drainer. The dishes that I had left soaking last night, he had drained the water and put the still dirty dishes in the dish drainer. But this time I didn't know whether to laugh or cry. I think I did a little of both. Nick says Mom I'm sorry. I said that's ok, but please don't help me with coffee or dishes for a while. I'm still trying to get the coffee pot in working order but I may have to buy a new one. All of this in a few minutes time from a child that never got into things he shouldn't be into. I sure hope when he turns eight in a few weeks, that he doesn't start getting too helpful. Laurie, when you're here tomorrow, If you want some coffee, Please ask me, not Nick. Thanks.\ Hopefully the rest of the day will be uneventful and normal Judy jamerman@uti.com ========================================================================= Date: Sat, 18 Apr 1998 15:06:51 -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: Jack and Raquel <jara1@BELLSOUTH.NET> Subject: Bienvenidos MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Bienvenidos/Welcome, Kris, Ruth and Joe to our great family....
You will find that you have done a wonderful thing by adding yourselves to this listserv. It's "GREAT" my husband Jack and I consider this to be our daily therapy where we can vent our frustrations and at the same time ask for advice. Eveyone is wonderful.
Let me tell you a bit about ourselves, we have four kids, Michelle 14, Steven 10, Erica 3 and Nicole 6 months, Nicole was born with Aperts and will undergo her first surgery next month.
Oh, by the way I do know what quinceanera is our daughter Michelle will have hers next year, I was born in Cuba but came to the states when I was 10 months old, but my parents raised me the latin way and yes I had my quince party and all. Of course my daugther Michelle wants one even though she has never been to a quince party, her first one will be in December (her cousins) and she is also going to be one of the attendants. I guess this quince thing must be a latin thing huh?
Any way welcome and hope to hear from you soon..
Best wishes Raquel Miller jara1@bellsouth.net ========================================================================= Date: Sat, 18 Apr 1998 15:22:04 -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: Jack and Raquel <jara1@BELLSOUTH.NET> Subject: Welcome MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Jasmyn and Patti,
Welcome to your new family. You will find this a great place to talk and share everything from happy to sad to concerns, everyone here is great you will find this a great place to be.
My name is Raquel my husbands name is Jack we have four children, Michelle 14, Steven 10, Erica 3 and Nicole 6 months, Nicole was born with Aperts and will undergo her first surgery May 7th. We are very nervous as I am sure everyone is as the surgeries get closer, but as it is always said this too shall pass.
Again welcome....
Raquel Miller jara1@bellsouth.net ========================================================================= Date: Sat, 18 Apr 1998 15:14:49 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: Frank & Annette Contrino <contrino@BUFFNET.NET> Subject: Re: HANDS Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
>Two of my brothers who have been carpenters at some stage in their lives are both missing finger bits (circular saw accidents - they aren't the most safety conscious people I know). One is missing most of his wedding ring finger, just the stub remains, and the other is missing the tip of one finger and nearly lost the tip of another. When we get together with them, particularly if a friend of my sister is present who has had one of his fingers removed, Amy is well aware she isn't the only one with hand differences!
Hummm, carpenters and circular saws... Dad did that one too. Back when he was younger he was a carpenter for a while and took off his thumb with a circular saw. It was reattached, but it's a bit shorter than it once was. One of his little games when we were younger was to put up his left hand and ask "how many fingers?". Of course, the initial response from the kids was "5", and he would always correct us. He thought it was cute, we didn't quite agree. :-)
Frank Contrino contrino@buffnet.net ========================================================================= Date: Sat, 18 Apr 1998 15:27:34 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: Frank & Annette Contrino <contrino@BUFFNET.NET> Subject: Re: Hands Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
>else. Does anyone else's children have joints in their fingers? >
Nicole has all her joints in her little fingers. In her index and ring fingers she does not have the middle joint. They move at the hand and the tip (slightly), but there is limited range of motion because of the fixed middle joint.
Frank Contrino contrino@buffnet.net ========================================================================= Date: Sat, 18 Apr 1998 14:04:50 -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: Laurie Ann Bailey <jkb@ELPASO.NET> Subject: Re: Introducing Jasmyn MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Patbrat718 wrote: > > Hello everyone, > > My name is Patti. I have a 9 year old daughter Jasmyn, who has Aperts.
Welcome!
My name is Laurie Bailey and we have a 23 month old with Aperts. His name is Jacob and you can visit him on Teeter's Page. Just wanted to say welcome. ========================================================================= Date: Sat, 18 Apr 1998 16:29:03 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: Yonstein <Yonstein@AOL.COM> Subject: Re: Picture request Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Dear Leanne and everyone else:
I, too, would love to have pictures for Emily when she grows up. I am sending one out to Leanne for Amy and would also ask anyone who is interested to include a photo for Emily at the address below.
I will also send one your way.
Thanks again,
Janine Krebs
187 Rhode Island Avenue Massapequa, New York 11758 ========================================================================= Date: Sat, 18 Apr 1998 16:37:22 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: Yonstein <Yonstein@AOL.COM> Subject: Re: Introducing Jasmyn Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Welcome Patti and Jasmyn:
My name is Janine Krebs and I have two children, Nicholas and Emily ( 9 months with Aperts.) I am sure you will find this family as wonderful and helpful as I have. I am on here every day that I can to catch up with what is going on and for emotional support when needed.
Looking forward to hearing from you both.
Best wishes,
Janine Krebs ========================================================================= Date: Sat, 18 Apr 1998 14:47:08 -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: Laurie Ann Bailey <jkb@ELPASO.NET> Subject: Re: interesting morning MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Judy Amerman wrote: >
> Laurie, when you're here tomorrow, If you want some coffee, Please ask me, > not Nick. Thanks.\ > Hopefully the rest of the day will be uneventful and normal > Judy > jamerman@uti.com
Judy,
Sounds like you had your hands full for a Saturday morning. Jacob likes to help me do dishes by pulling the dirty dishes out of the dishwasher before I can complete the job and shut the door.
Looking forward to tomorrow. See you then!
Laurie jkb@elpaso.net ========================================================================= Date: Sat, 18 Apr 1998 11:46:02 +0000 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "Joana H. Magno, M.D." <magnomd@ALOHA.NET> Subject: Welcome, Sarah MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
For those of you who have been here on the list since its earlyier times, you will remember that we were notified that there was a little Korean orphan with Apert's named Sul Hee. That would be about two years ago.
I am very pleased to announce that Sul Hee has been adopted by an American couple living in Korea, and has been named Sarah Elizabeth. Sarah and mom, Bea, and dad, Tim just arrived in Honolulu this morning and will be spending some time with us vacationing and finalizing her American citizenship. Then, they will be going on to Seattle for evaluation and surgery.
Margaret and Sarah have already become good friends, and I must tell you how delightful it is to hear them laughing in the background as I type this.
I hope you will join me in welcoming Sarah and her family to the United States, and to our listserv.
Aloha,
Joana Magno Mar Mar's mom ========================================================================= Date: Sat, 18 Apr 1998 17:45:20 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: LUVS2WRTE <LUVS2WRTE@AOL.COM> Subject: Re: Picture request Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
I think this is a great idea. In my room, I have a map of the U.S, with dots on it representing where people with Apert live. I'd love to be part of the picture exchange.
IIf anyone wants one to exchange, just e-mail me (luvs2wrte@aol.com) I'll have my mom take a few and get them in the mail. Leanne and Janine, I'd to have a picture of your angels. To you, and everyone else, my address is,
Andrea Gartner 11394 Royal Tee Cir. Cape Coral, FL 33991
-Andrea ========================================================================= Date: Sat, 18 Apr 1998 17:48:06 -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: ROBIN L HILL <CARMENRAE@PRODIGY.NET> Subject: Fw: Carmen Rae is home! MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit
---------- > From: ROBIN L HILL <CARMENRAE@prodigy.net> > To: APERT@LISTSERVER.AOL.COM > Subject: Carmen Rae is home! > Date: Saturday, April 18, 1998 1:49 PM > > > Robin and I would like to thank everyone for their prayers and thoughts. > The surgery went very smooth and Carmen Rae got to come home today. It > seems the surgery was harder on Mom and Dad. Dr. Petronio was the > Pediatric Neurosurgeon and he was fabulous. > > The Craniofacial Team wants to move Carmen's "Cranio" surgery up from July > 21st to mid June. They are very happy with Carmen's weight gain and feel > she is strong enough to do well in the surgery. > > We were glad to hear that BJ made it home. We thank everyone for being > there and we will keep you all in our thoughts and prayers. > > God Bless each and everyone of you! > > Mike & Robin Hill ========================================================================= Date: Fri, 18 Apr 1997 16:31:51 -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: Longshot & Darwin <Longshot.Darwin@MCIONE.COM> Subject: Re: Picture request In-Reply-To: <1998417191831618467@ix.netcom.com> MIME-version: 1.0 Content-type: text/plain; X-MAPIextension=.TXT; charset=US-ASCII Content-transfer-encoding: 7BIT
I also would like to be in the picture exchange. If anyone would like to send one and I will send one to you, my address is:
Rachel Fletcher 3900 Vernon Memphis, Tn 38122
Thanks
Rachel ========================================================================= Date: Sat, 18 Apr 1998 16:47:43 -0600 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Chad & Denise Graham <cgraham@INFOAVE.NET> Subject: picture request MIME-version: 1.0 Content-type: text/plain; charset="us-ascii"
I would also love to have pictures of all of our kids and adults. I have taken down every adress given so far. I will be sending Daryl's picture soon.
Denise Graham 1030 Fairfield Pike Shelbyville, TN 37160
Denise Graham ========================================================================= Date: Sat, 18 Apr 1998 21:07:30 +0000 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "J. G. Lindamood" <chanan8@JUNO.COM>
Dear family!
I wanted to echo everyone else and welcome the new families. My name is Joanne, I'm 33 and have Apert's. My surgeries are fewer than most as I was born years ahead of the current technology. I only have thumbs on both hands and my toes are still webbed. I'm a "single mother" of two parrots, Clarence and Coal. They are my sunshne everyday! I just started back to school after a four year break from earning my Associate's degree in Communications. I'm taking a class in Therapeutic Recreation and considering getting a degree in this field. With the exception of the two birds, I live alone and love my independence!
I hope this huge family provides you with the answers you are seeking. There is no doubt that you will feel the love.
BTW: I have contacted a family doctor whom I respect very much and have asked him to direct me to a doctor who might know something about Birth Defects. I want to learn more about what you are experiencing. Joanne (I'm from cold and cloudy Ohio)
_____________________________________________________________________ You don't need to buy Internet access to use free Internet e-mail. Get completely free e-mail from Juno at http://www.juno.com Or call Juno at (800) 654-JUNO [654-5866] ========================================================================= Date: Sat, 18 Apr 1998 23:38:57 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: Thornq <Thornq@AOL.COM> Subject: Re: Picture request Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Jenn,
It will cost you about $14.00 (I think.......it could be less for a small package.) Your post office will know.
Lynn ========================================================================= Date: Sat, 18 Apr 1998 22:44:02 -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: Welcome, Sarah Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
Joana, this is heartwarming news. Thank you for sharing this. :-) A win-win for all!!! Welcome to Sarah and her family!!!
Hugs, Robyn Johnston Eugene, OR ========================================================================= Date: Sun, 19 Apr 1998 22:39:51 +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: Picture request Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
What a lovely idea Leanne. I have a super photo of Amy I will send over (I already owe Joanne one!) and would be delighted to receive one of your Amy, plus photos from those others interested.
Ann Luxton and Howard and Amy Esler 6 Peter Mulgrew Street Avondale, Auckland 7 New Zealand
We are planning to get a world map up on the wall with stickers showing where different families are - now we can add the photos as well!
>it occured to me that it might be fun to do a "picture exchange". I >know that many of you have pictures on Teeter's page but I still >enjoy snail mail! ========================================================================= Date: Sun, 19 Apr 1998 22:39:54 +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: interesting morning Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
Hey Judy, don't you just love it when they do that to you first thing in the morning.
Amy has recently started bringing us breakfast in bed and, being a person who is VERY set in her choice of breakfast, I am really having to train myself to be obliging and eat what she brings. Cold water and an orange or a tub of yoghurt are a little less damaging than what you had to clean up though I must admit!
It certainly isn't easy to cope with such things in good humour first thing in the morning, and I have snapped at Amy for less, but bless their hearts they are proving that we have at least taught them the appropriate nurturing stills. And we need more young people who know how to nurture.
Keep smiling, Ann NZ ========================================================================= Date: Sun, 19 Apr 1998 09:28:52 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: Jenngram <Jenngram@AOL.COM> Subject: Re: Picture request Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
ok, well I want in on this one too..I'm sending pictures out, but would love some as well from any interested parties.
Jennifer Graham 6220 7th Ave North St. Petersburg, FL 33710 ========================================================================= Date: Sun, 19 Apr 1998 10:17:12 -0400 Reply-To: Informati