========================================================================= Date: Thu, 8 Jan 1998 08:39:02 +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: "J. G. Lindamood" <chanan8@JUNO.COM>

Hello!

My memory is coming back...slowly. During what was supposed to be an out patient surgery I had nine impacted teeth removed when I was in high school - unrelated to Apert's. Just inherited my dad's teeth, in addition to my own. I was so sick after the surgery, vomiting and dry heaves, they almost admitted me in case I was dehydrating. I refused to be admitted. I guess I had my share of hospitals. The surgery was very early in the morning, I didn't leave the out patient ward until way after 10:00 p.m. that night. Went home and continued to feel lousy. Funny how your memory conviently forgets the unpleasant moments.

Joanne - in, it's early, haven't looked out yet, Ohio ========================================================================= Date: Thu, 8 Jan 1998 09:08:08 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jenngram <Jenngram@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Re: NEW TO THE LIST Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Karen,

My son has yet to have any surgeries, but he did have sedation for his 3-D CT and although I can't remember the sedative (hydro something or other) I do know he had respiratory problems following. No one knows if the dosage was too high, or it was the med itself. All I do know is that w/ his cranial surgery around the corner, not a soul who comes in contact will be unaware of the reaction..we'll see about nausea and the likes..I know it makes me sick as a dog!!

Jenn ========================================================================= Date: Thu, 8 Jan 1998 09:08:41 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: JPCSLC <JPCSLC@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Re: post surg. sick Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Hi - My name is Sherri Colbert, and my daughter is using our computer now and has become a member of this very special group..My granddaughter, Katey Grace who is now 2 and almost 1/2 has had 2 cranial surgeries and 2 hand and feet surgeries in addition to tubes in her ears last March. With the exception of her last cranial surgery in January of 1997, she has had very little reaction to the anesthesia. But that time she also had a little bout with pneuominia(?). Her worst reaction is to the morphine they give for pain. It makes her very stressful even from her very first surgery when she wasn't quite 4 mons old. As soon as they will let us we get her right on just tylenol w/codine. Then just tylenol. Unfortunately those things are a little hard to predict. We live in Central Florida and Katey's proceedures have been done at Florida Hospital in Orlando. Her neuro. surg. is Dr. Jogi Patisapu and her plastic specialist is Dr. Poole. Both of them are really angels in men clothing. In all my years I have never seen such personal involvement, love and genuine concern not only for our Katey but for her entire family. These men feel like extensions of our own family. From the very first day Katey was born and Dr. Patisapu first met us he was so confident and positive. I'll never forget his first words, he said to my daughter, Mom, your little girl is gonna be fine, we're gonna take care of her, but my real concern is for you. I am so very proud of my daughter and her husband, who is like a son to me. From the very first they have felt blessed. On the way home from the hospital he said to me, "God must think Jenn and I are special cause he gave Katey to us and she is special. What if she had been born to a family who wouldn't love her, it would be a tragedy." To know her is to love her. She hasn't let anything slow her down. We have NEVER treated different therefore she doesn't act like she is. She has her "Angelic Days" like all children and her "Terrible Twos" like all children and that is as it should be. The one question that I have to all of you out there is, have any of you had problems with lots of other types of sickness, like Katey is always getting upper-respitory junk and Jenn has to miss alot of work. Has it ever been so bad that you were forced to quit you jobs and if so how did you handle the medical part. right now they have group insurance with my daughters job and what little insurance they could buy elsewhere I'm sure would consider katey's aperts a pre- existing condition. any of you with experience out there we could sure use some input. Well I guess for my first correspondence is was a little long windded but it is so great to have a media and extended family out there I guess I'm just overflowing.

God Bless You All

Granny Sherri

PS They are planning to finally have that second baby. We are so excited!!! ========================================================================= Date: Thu, 8 Jan 1998 11:45:40 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: JKram511 <JKram511@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Orlando Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Granny Sherri- between you and I, Blakes's grandmother and Brenda's Mom and others who haven't checked in yet, we are getting a grandparent's network. Perhaps our notes can encourage Brenda's Mom .We are all so proud of in our children and their spouses and our grandchildren for how they are dealing with the challenges of Apert's.

Who is your otolaryngologist in Orlando? On our annual visits there we have become friends with a woman whose husband is in that speciality. I met him last year and asked if he had treated an Apert's child. He said that he had such a patient and I think he said it was a girl. Perhaps it is Katey. My friend's name is Van Noe Moser and she always asks me how Nate, my grandchild is doing. . She and her husband have a little girl about age 6 whose name is MacAllen. It would be a nice coincidence if he is on Katey's medical team.

Best wishes, Julia in Chicago ========================================================================= Date: Thu, 8 Jan 1998 10:31:46 -0700 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: baconsmith <bluenose@TELUSPLANET.NET> Subject: Re: NEW TO THE LIST Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

Hi Jenn and everyone else. My little girl has never had any nausea with her general anesthetics. She is now four. I carry a book with me and record everything she is given and then record her reactions to it. She had an IV sedation of Nembutol for her 3D CT scan last May. She konked out almost immediately from it and then she slept it off for about another two hours following the scan. She was quite loopy afterward, falling down goofy in fact. We were advised not to let her walk alone (or walk at all -- she had a wheelchair for the afternoon) for the first 6 - 10 hours following the scan.

There is a drug index on the internet -- sorry, I don't have hte URL, but if you search for medication -- pediatric you'll probably find it. It shows allthe various drugs and their different names and all the contra-indications and so forth. I like to stay on top of my daughter's medications -- I know for example that codeine puts her off her food -- she is really cranky on codeine. I myslef hate taking it -- it makes the top of my head come off and buzz like crazy. Perhaps my daughter has inherited some of my sensitivity to it. At any rate, following her last surgery (an orbital osteotomy -- 10 hours, grafting from forehead bone to orbits and cheekbones) she refused any pain meds once we were out of hosp. By day three following release, I was able to convince her to take POT (plain old tylenol), but she was darned if she was gonna take anything else. She's so stubborn. While in hosp she was on a morphine drip for three days. She seems to do fine on the morphine, altho in recovery following her palate repair, she quit breathing and they had to bag her to bring her back. Scary stuff, but worth knowing how your child reacts to various drugs. I always figure that it's my job to know exactly what they are doing with my kid because, while the docs are the experts in the hosp, they see so many little patients, how can they remember them all in such detail. So I always warn the anesthesiologist and others about those parts of her chart.

Take good care.

Pat BAcon in Calgary

mom to the peach

email to: bluenose@telusplanet.net We are all worms, but I do believe that I am a glow-worm." Winston Churchill ========================================================================= Date: Thu, 8 Jan 1998 12:13:34 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: JPCSLC <JPCSLC@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Re: Orlando Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Hi to Julia --- Katey's otolaryngologist is Dr. Moser of the Nemous Children's Clinic which is located right acrossfrom the Arnold Palmer's Women and Children's Hospital. Thanks for answering me so quickly. I think it's kinda neat to be able to reach out to others cause quite frankly this Aperts is so rare we begin to feel isolated like we are the only ones. There is truly Strength in numbers. For all of you that are just beginning to walk this path, please find comfort and strength in our numbers and feel our prayers even if we don't know you or your childs name God does.

Granny Sherri ========================================================================= Date: Thu, 8 Jan 1998 10:14:00 -0700 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: baconsmith <bluenose@TELUSPLANET.NET> Subject: Re: Florida contact (was post surg sickness) Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

Hi Sherri. I am writing to let you know about an organization which you may want to connect with. A little girl named Kristina Cassidy in West Palm Beach was born with a severe facial cleft. She is now about 6 years old. Her granmom is Liz Scott and has done tons of work with families and their medical/insurance needs. I've copied your post and sent it on to Liz. Hope that is okay with you. Anyway, Liz is a bundle of energy and I'm sure she'd enjoy hearing from you. I had the pleasure of meeting her last spring while on vacation at WDW and then at the PGA resort in West Palm Beach.

Her e address is Lizabeth Scott <KristinaCassidyFoundation@worldnet.att.net>

Best of luck and hugs to sweet Katey Grace Pat BAcon in Calgary, mom to the Peach (Tessier facial cleft, www.widesmile.org/gallery/peach.html

>Hi - My name is Sherri Colbert, and my daughter is using our computer now and >has become a member of this very special group..My granddaughter, Katey Grace >who is now 2 and almost 1/2 has had 2 cranial surgeries and 2 hand and feet >surgeries in addition to tubes in her ears last March. With the exception of >her last cranial surgery in January of 1997, she has had very little reaction >to the anesthesia. But that time she also had a little bout with >pneuominia(?). Her worst reaction is to the morphine they give for pain. It >makes her very stressful even from her very first surgery when she wasn't >quite 4 mons old. As soon as they will let us we get her right on just >tylenol w/codine. Then just tylenol. Unfortunately those things are a little >hard to predict. We live in Central Florida and Katey's proceedures have been >done at Florida Hospital in Orlando. Her neuro. surg. is Dr. Jogi Patisapu >and her plastic specialist is Dr. Poole. Both of them are really angels in >men clothing. In all my years I have never seen such personal involvement, >love and genuine concern not only for our Katey but for her entire family. >These men feel like extensions of our own family. From the very first day >Katey was born and Dr. Patisapu first met us he was so confident and positive. >I'll never forget his first words, he said to my daughter, Mom, your little >girl is gonna be fine, we're gonna take care of her, but my real concern is >for you. I am so very proud of my daughter and her husband, who is like a son >to me. From the very first they have felt blessed. On the way home from the >hospital he said to me, "God must think Jenn and I are special cause he gave >Katey to us and she is special. What if she had been born to a family who >wouldn't love her, it would be a tragedy." To know her is to love her. She >hasn't let anything slow her down. We have NEVER treated different therefore >she doesn't act like she is. She has her "Angelic Days" like all children >and her "Terrible Twos" like all children and that is as it should be. The >one question that I have to all of you out there is, have any of you had >problems with lots of other types of sickness, like Katey is always getting >upper-respitory junk and Jenn has to miss alot of work. Has it ever been so >bad that you were forced to quit you jobs and if so how did you handle the >medical part. right now they have group insurance with my daughters job and >what little insurance they could buy elsewhere I'm sure would consider katey's >aperts a pre- existing condition. any of you with experience out there we >could sure use some input. >Well I guess for my first correspondence is was a little long windded but it >is so great to have a media and extended family out there I guess I'm just >overflowing. > >God Bless You All > >Granny Sherri > >PS They are planning to finally have that second baby. We are so excited!!! > > email to: bluenose@telusplanet.net We are all worms, but I do believe that I am a glow-worm." Winston Churchill ========================================================================= Date: Thu, 8 Jan 1998 10:01:09 -0800 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Joseph Chan <jchan7@PACBELL.NET> Subject: Re: Ear Tube surgery MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

Yonstein wrote: I still have a hard time with the whole > picture.

Dear Janine, Hope the surgery went smoothly! The whole picture is much too overwhelming!!! Take one day at a time. Roxy (age 9) has had 6 sets of ear tubes. Each procedure was only about 10 minutes plus the time it took her to come out of the anesthesia. It really helped her overall health. The drainage decreased the amount of ear infections and temporarily improved her hearing. The only problem now is that she has a permanent hole in her ears due to the scarring! Best wishes for a speedy recovery!

Rose La Mirada, CA ========================================================================= Date: Thu, 8 Jan 1998 13:33:48 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jenngram <Jenngram@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Re: post surg. sick Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Sherri,

Wher in central Fla. are you from? My husband and I have alittle boy, 4 mos., about to have his first cranial surgery in Feb. We are from St. Petersburg..and if possible would love to get together. Let me know by e-mail or phone

My private e-mail is jenngram @aol.com phone: 813-381-9138

Hope to talk w/ ya'll soon

Jenn ========================================================================= Date: Thu, 8 Jan 1998 14:54:30 -0800 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Robyn Johnston <robyn@ORDATA.COM> Subject: Re: post surg. sick Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

Hi Gr. Sherri, It is good to hear from you. I just thought I'd share briefly our situation with my daughter and our work/insurance scenario as we recently did the same thing your daughter is considering. My husband and I both had very good jobs with insurance. Because of my daughters medical needs, and lack of good daycare options - (we tried several times), we decided to have me stay home for a year to see if we could work it out. Luckily I took a Leave w/out pay option so I can go back later if I choose. Regarding insurance, we transferred Brenna into a "portability" option with my current provider. This is where the current insurance will transfer an existing member into another option within the same company. It worked out very well for her situation. It was relatively low cost as well - I couldn't believe it. We have an HMO (Blue Cross Blue Shield). The other insurance will remain the same. I am currently pregnant with our 2nd child - a little boy. I would "like" to be able to stay home while the kiddos are young if we can afford it! We'll see :-)

Hope this helps. Robyn Johnston, Sunny but cold today in Eugene, OR

At 09:08 AM 1/8/98 EST, you wrote: >Hi - My name is Sherri Colbert, and my daughter is using our computer now and >has become a member of this very special group..My granddaughter, Katey Grace >who is now 2 and almost 1/2 has had 2 cranial surgeries and 2 hand and feet >surgeries in addition to tubes in her ears last March. With the exception of >her last cranial surgery in January of 1997, she has had very little reaction >to the anesthesia. But that time she also had a little bout with >pneuominia(?). Her worst reaction is to the morphine they give for pain. It >makes her very stressful even from her very first surgery when she wasn't >quite 4 mons old. As soon as they will let us we get her right on just >tylenol w/codine. Then just tylenol. Unfortunately those things are a little >hard to predict. We live in Central Florida and Katey's proceedures have been >done at Florida Hospital in Orlando. Her neuro. surg. is Dr. Jogi Patisapu >and her plastic specialist is Dr. Poole. Both of them are really angels in >men clothing. In all my years I have never seen such personal involvement, >love and genuine concern not only for our Katey but for her entire family. >These men feel like extensions of our own family. From the very first day >Katey was born and Dr. Patisapu first met us he was so confident and positive. >I'll never forget his first words, he said to my daughter, Mom, your little >girl is gonna be fine, we're gonna take care of her, but my real concern is >for you. I am so very proud of my daughter and her husband, who is like a son >to me. From the very first they have felt blessed. On the way home from the >hospital he said to me, "God must think Jenn and I are special cause he gave >Katey to us and she is special. What if she had been born to a family who >wouldn't love her, it would be a tragedy." To know her is to love her. She >hasn't let anything slow her down. We have NEVER treated different therefore >she doesn't act like she is. She has her "Angelic Days" like all children >and her "Terrible Twos" like all children and that is as it should be. The >one question that I have to all of you out there is, have any of you had >problems with lots of other types of sickness, like Katey is always getting >upper-respitory junk and Jenn has to miss alot of work. Has it ever been so >bad that you were forced to quit you jobs and if so how did you handle the >medical part. right now they have group insurance with my daughters job and >what little insurance they could buy elsewhere I'm sure would consider katey's >aperts a pre- existing condition. any of you with experience out there we >could sure use some input. >Well I guess for my first correspondence is was a little long windded but it >is so great to have a media and extended family out there I guess I'm just >overflowing. > >God Bless You All > >Granny Sherri > >PS They are planning to finally have that second baby. We are so excited!!! > ========================================================================= Date: Thu, 8 Jan 1998 15:47:40 -0800 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Robyn Johnston <robyn@ORDATA.COM> Subject: To the Harmons Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

Marjorie & David,

Haven't heard from you in a while. Hope everything is alright. We are thinking of you and sending prayers and good thoughts your way. Thanks for sharing "In this Day" It is beautiful.

Robyn J. ========================================================================= Date: Thu, 8 Jan 1998 19:12:32 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: MHTeach102 <MHTeach102@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Re: To the Harmons Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Sorry about that,

Been meaning to update more often but can't seem to find the emotional strength anymore. Everyone sounds like they are doing so well and I don't want people getting down just because of us.

The BJ update.... It is hard to say how we are doing, we don't know and the doctors don't know. There are days that BJ seems to be recovering nicely. He has been alert and aware on several occasions. There are also days where we don't know how is still alive. All of this has really began to take it's toll on all of us. I always hoped that as soon as BJ made it home he would really begin to recover quickly. That just doesn't seem to be happening and it is hard for me to accept.

Today has been one of those half-way days. He was able to sit up for a little while, and he even drank some of his special milkshake. (I wouldn't touch it from the smell). But at the same time, today he needed the vent for most of the day and was having enough pain to need morphine. So I really don't know. But we keep on keeping on, and are doing the best we can.

Once again I apologize for not updating more. And I will try to do better.

Marjorie Harmon ========================================================================= Date: Thu, 8 Jan 1998 19:36:09 +0000 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Comments: Authenticated sender is <jgibson2@POP.erols.com> From: Judy Gibson <jgibson2@EROLS.COM> Subject: Re: To the Harmons In-Reply-To: <57f965d3.34b56b71@aol.com> MIME-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7BIT

Marjorie, I suspect you'll get several messages like this one. Don't worry about people feeling "down". We worry when you don't post -- whether the news is good or bad, we want to know. You're in our prayers.

Judy ========================================================================= Date: Thu, 8 Jan 1998 16:48:43 -0800 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Robyn Johnston <robyn@ORDATA.COM> Subject: Glasses - help Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

I hope someone can help us with this one...

I am having the toughest time getting the Plum to wear her Glasses. We have been trying to get her glasses on her for over a year now and I am about at wits end!!! I am just wondering if anyone has some suggestions, useful hints that maybe I could try.

She was supposed to start wearing them a year ago. She was about 8 months then and would just pull them off whenever we tried. Basically we just can't get them to fit her face very well. She hardley has a nose and they come off at the slightest pull. They go around her ears, but still don't stay up. We tried several different types of croakies, and straps for the back without much luck either. They weren't tight and again she just pulled them down right off her nose. At about 1 year of age, a cousin in Med school said we really need to get her glasses on her as it is a real critical time right now for eyesight development. We treid again with the same results. WE set up an appt with her opthomologist letting him know our concerns that she would not wear them. He updated her prescription, said she needs to wear them and sent us to the person who fits eyeglasses and had him look at the fit. He tied elastic to them in back. The elastic was so tight that we could not pull it over her head without her crying! ARGGG! So back to zero! We tried several more pairs of bands and straps with some success. The one that worked the best (kept them on the tightest) pulled her hair though. I don't think daddy was too gentle taking them off and now she wont let us put them on. I actually bought some wide elastic and sewed velcro to each end to secure them in back. It doesnt pull her hair as much, but now she refuses to put them on. Can you blame her? The last few days I have actually taken her to my husbands office to have him help me put them on her in the morning. He has to hold her down whle I put them on. Poor little poop! Once they are on, she is fine and will leave them on. We give her lots of praise and we both wear our glasses around her - (I wear fake ones!) to show her it is ok. The problem is after her naps, I can't get them back on her. I suppose i could drive her to my husbands office again for more help - or get a toddler straightjacket! ;-) just kidding.

Has anyone been throught this? I am about at witts end with the whole thing. Erins father even told us we are bad parents for not getting her to wear them consistantly. I don't think he really meant it, just trying to prove a point in his blunt sort of way. I am not sure what to do to get her to wear them. I know it is a minor issue, but, boy what a battle!

I know nothing of child psychology, is using rewards a good thing or does that promote other behavioral problems. She loves using the computer, but I am not letting her use it today until her glasses go on. I feel like such a heal.

Any help, hints, or helpful device suggestios would be much appreciated.

Thanks, Robyn J. Eugene, OR ========================================================================= Date: Thu, 8 Jan 1998 20:10:09 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jenngram <Jenngram@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Re: To the Harmons Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Marjorie,

I'd like to echo what Jud wrote. I have been really worried..wondering how things are going for ya'll. Despite all thats happening, ya'll continue to be in our thoughts and prayers..thanks for taking the time and strength to update us..

Jenn ========================================================================= Date: Fri, 9 Jan 1998 01:53:11 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Camous <Camous@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Re: Glasses - help Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

In a message dated 98-01-08 19:47:51 EST, you write:

<< She loves using the computer, but I am not letting her use it today until her glasses go on >> This sounds good. Can you distract her some with an impending favorite activity if the glasses go on?? We've had to try all kinds of distraction to keep Evan from wailing and creating gallons of additional secretions when we first put on his Passy-Muir (speaking) valve. Or how about a sticker chart or M&M's - all those tricks parents have used for centuries for toilet training?? They have really cute M&M dispensers now. My best friend's daughter (now 8) had to wear glasses as an infant/toddler for strabismus- I'll check with her when we talk next (she's in Rochester, NY) and see what worked for Meredith. After Evan's last cranio surgery, we joked that they had brought out his forehead so far that if he ever did need glasses they'd have to tape them down from his forehead!!

Good luck! Marianne ========================================================================= Date: Fri, 9 Jan 1998 02:07:43 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Camous <Camous@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Aperts cover girl, and other things Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Wow! I was just leafing through one of those newsprint parents newspapers ("Bay Area Parent"). These things are all ads and this issue has all the info on schools for next year. I did a double take when I saw this photo of two little blonde girls in this ad for a chain of preschool/daycare centers. One good look at the face on the littler one sent my eyes careening down to her hands...Yup!! She's an Aperts kid! Characteristic facies and surgically separated fingers by the look of it!! Sure warms the cockles of my fairly jaded heart to see one of our kids in an ad like this- and she's cute as can be!!

Another bright spot today- Evan got his stents out!! Now dinner doesn't come pouring out his right nostril (the chocolate pudding was the worst!! Ugh). He SO much happier! The grin hasn't left his face!!

Thanks for the update, Marjorie...I think we all get a little nervous when we don't hear- not down when we do. We all an emotional stake in your brave guy and families and friends who have him on the "prayer wheel". We understand that some days just getting by is all one can manage and having to rehash it verbally or via the keyboard is more than anyone can do- keep the faith!! You are an inspiration to us all. And know we're with you in spirit.

Marianne, Evan and the gang!! ========================================================================= Date: Fri, 9 Jan 1998 07:41:24 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jenngram <Jenngram@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Re: Glasses - help Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Robyn,

I think the idea of not using the computer ubtil glasses are on is a good idea..esp b/c it involves using the eyes..same as TV or reading a book..as far as child psych..no real knowledge here..onlt not to use food or exercise as a reward/punishment. I think you're on the right track..hmmm mmore fun for us down the road????!!!!

Jenn ========================================================================= Date: Fri, 9 Jan 1998 07:53:50 +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: Just babbling

Hello!

Congratulations Evan on the removal of the stints! Hooray! I know how you feel! I had them in for more than a week when I had my septoplasty - if I'm correct in thinking stints were in your nose??

Marjorie, I will echo Marianne in saying we get anxious when we don't hear from you and not down when we do.. We want to support you and your family as much as possible from afar. With this support comes the unconditional shoulders for you to lean on. Don't think about us, concentrate on what you need to get through this day into the next. We will be here to help you get there.

Sorry to hear about the struggles with the glasses. The reward system works, and you can be creative with what you give and take.

I am so addicted to this group of people! There is a twenty minute ride to work I have to accomplish in less than 15 minutes! WEEEEE! Gotta dash! Keep the faith!

Joanne, in Ohio ========================================================================= Date: Fri, 9 Jan 1998 08:30:22 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jenngram <Jenngram@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Re: stents/pics Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Yeah to Evan for getting those stents out!! If only these little guys knew what their smiles could get them..I think Jordan is picking up on this!!

Thanks again for the info on pics..we are going next Sat...and I ended up telling them a/b Jordan just b/c I didn't want the to ask w/ Joe there. Hes on this "why can't things just be normal" kick and if they asked I thought it might push him over the cliff hes teetering on.. I think its sleep depravation...Hes been working nights in the ER and has the flu, and has been getting migranes. I've had to administer ore than 1 Imetrx injection (a godsend drug to those w/ migranes)..I don't think hes thinking too rationally. When hes home sleeping during the day hes been sleep walking and talking..but it provides a bit of humor to my day. An-hee-way..heres hoping Jordan will give a big gummers smile to the camera. We've got a week to practice!!

Ya'll have a nice and hopefully DRY (finally) weekend!!

Jenn ========================================================================= Date: Fri, 9 Jan 1998 07:10:59 -0800 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Penny Halverson <phalvers@U.WASHINGTON.EDU> Subject: IRC's Chat Tonite! 01/09/98 MIME-Version: 1.0 Content-Type: TEXT/PLAIN; charset=US-ASCII

Hi everyone!!!

Tonite is ApertCrouzon Chat Nite!! So let's get acquainted with each others. :-) Keep in mind that some people will show up alittle later than the time started. IRC Chat is OPEN ALL NITE so stay as long as you like. Please join us!!! :-)

*NOTE* - I'll be alittle late tonite so I'll be around between 7:30pm and 8:30pm (PST-Seattle time). Will see ya'! ;-)

Date To Meet On: Friday, January 9, 1998

IRC Server: ChatNet (Any locations)

Port Setting: 6667

Channel: #ApertCrouzon

Time: 11:00pm AT/10:00pm ET/9:00pm CT/8:00pm MT/7:00pm PT/5:00pm HT

In case you haven't had a chance to download the mIRC for Windows 3.x and 95 or IRCle for MAC users. Please go to download from one of these below. Be sure to follow the instructions on how to install it and the setup. Be sure to set the Port setting and add by typing the channel name called exactly like this: #ApertCrouzon .

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

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

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

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

Or for a quicker assistance, you can reach Kristi on AOL IM (AOL Instant Messenger) and she will be available to assist you - see below:

Kristi's screen-name: LilOneB (anytimes)

You can download the AOL IM (AOL Instant Messenger) at: http://www.aol.com/aim

You don't have to be a member to join AOL IM and it is free! AOL IM is an one to one online chat.

Everyone is welcome!!!

Thanks and please join the fun!!!!

Hugs, Penny

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

mailto:hwy2heaven@earthlink.net mailto:phalvers@u.washington.edu ========================================================================= Date: Fri, 9 Jan 1998 17:49:09 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Gaylann1 <Gaylann1@AOL.COM> Organization: AOL (http://www.aol.com) Subject: SONYA'S UPDATE Mime-Version: 1.0 Content-type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 8bit

Hello everyone. I'm Sonya, Gaylann's daughter and Blake's Mom. I have been meaning to sit down and write ever since my Mom found this wonderful service, but with three boys you know where my time is spent. I know she has told you about our family and Blake, so I'm sure I will duplicate a lot of what you already know. Blake has a third cranial vault remodeling scheduled for Jan 27th in Dallas. My mom has told me that she is receiving e-mail's asking if we are familiar with the clinics in our area that are more convenient than Dallas. I will try not to spend too much of your time trying to explain how we chose the Dallas clinic. So, I’ll keep this as simple as I can hoping to answer everyone's question. Blake was diagnosed with Crouzon's at 8 weeks. Our pediatrician sent us to a PS in Memphis that he used when his daughter was born. She was missing a portion of her forehead. Our PS sent us to our neurosurgeon who then sent us to our opthamologist. Memphis had a team at this time through Baptist Hospital, but we were never encouraged to take Blake. (It is very confusing, and let's just say it had something to do with who liked working with who.) We never took Blake outside of Memphis in the first 2 years since we felt we were receiving good care. However, the more we learned over time and the more families and individuals that we spoke with, the more we realized we were in need of an experienced team to help follow Blake's care. And so we started our search. I was speaking with Lynne Mayfield in Chattanooga at the time gathering information on support groups. She encouraged us to come visit Dr. Larry Sargent. We took Blake a year ago this past fall. He was 2 1/2. And to be honest, my husband and I were surprised by the visit. He told us that Blake needed a third cranial vault surgery and wanted to schedule as soon as possible. At the time, Blake had no innercranial pressure or pressure on his optic nerves. My husband and I returned to Memphis and spoke with our pediatrician asking where o go for a second opinion. The next month we visited UVA in Charlottesville. We met with Dr. Kant Lin. He spent several hours with us reviewing Blake's scans and past medical history. He said Blake would need another surgery when medically necessary. Blake was young enough that we would want to wait to get the best result. Anyway, (I'm trying to keep this short!) also during this time an ENT had returned to Memphis from working with a cranialfacial team in LA. ( He had decided LA was not the place to raise 6 kids.) We were thrilled to find him. We had not had success finding an ENT who could address our concerns and problems. After several visits, I mentioned to him that we were looking for an experienced team, and asked his opinion. We were scheduled to take Blake to Nashville to meet with the Vanderbilt team. He suggested several clinics but not Nashville, and we had received the same response from another PS. Blake was doing wonderfully so we canceled our trip and spoke to several people evolved with the Vanderbilt clinic by phone, as well as, receiving information by mail. We have spoken with several families who are pleased with the care they are receiving in Nashville. (By the way, our ENT has reorganized a new team in Memphis hoping to bring more complete cranialfacial care to our area.) Through conversations with different professionals not located in the Southeast, the Dallas clinic continued to be brought to our attention. So, this past summer when we were becoming concerned that Blake was getting close to needing the same surgery for the third time, we had information mailed from the Cranialfacial Clinics in Atlanta, St. Louis, and Dallas. We also contacted the ACPA who were kind enough to send us statistics on these clinics and the ones I've already mentioned. We made a trip to Dallas in September and was pleased with what we learned and with what the team members had to say. We knew if Blake was to need surgery soon, we would feel comfortable taking him to Dallas. We were making p Atlanta's team at the Scottish Rite hospital, when my pregnancy with our third son kept us home (he was trying to enter this world too soon). I often wonder what would have happened if we had been encouraged to see a team from the very beginning, and if our decision would be different. It has always been an aggravation to us that we have local access to some wonderful doctors and a great childrens hospital, Le Bonhuer, but not to a team. Everyone's decision on choosing a team is personal. What may be right for one family, may not be right for another. You need to be able to trust and communicate with your team. It is difficult traveling any distance for medical care. It seems to intensify what you're doing. Hopefully, with experience, it'll become easier for us. Blake has not had surgery since he was 2. I would love any advice on caring for a preschooler during surgery. I just don't know how much he'll understand and what we should prepare him for. I was also wondering if any of you have ever used a child life program offered thru your hospital preparing your children for surgery or if you remember participating in one during your own surgeries. Hope I've answered some questions. I've prayed often for a sign telling me where we belong with Blake. I think maybe just the turn of events is my answer.

Brenda, Hope you gained knowledge on your trip to Chattanooga. I know that these are difficult decisions to make. Wouldn't be nice if they were black or white. Good Luck with Jonathan.

Denise, I know you have had recent surgeries also. Hope everything is well. Hope to meet with you sometime when we are in Nashville or Murfreesboro visiting family.

Take Care, Sonya

Blake's DOB 4/15/94

Sept. 94 Sutures released and forehead advanced Feb. 95 Cranial vault expanded March and April 95 two outpatient eye procedures (due to complications of last cranial surgery) Sept. 95 Ventricular Shunt placed Aug. 6 Ventricular shunt valve replaced (broke due to falling off his playgym!) Jan 98 Cranial vault remodeling scheduled ========================================================================= Date: Fri, 9 Jan 1998 18:01:02 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Gaylann1 <Gaylann1@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Procrit study Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Hi everyone,

Blake is participating a study for a drug (procrit) that will prevent the need for blood transfusion during surgery. We thought he would need shots three weeks before surgery but he lucked out and is taking iron and giving blood. Sonya took him Tuesday to give blood. Of course they had to hold him down. This just kills me.

Has anyone heard of this drug?

Gaylann, Blake's Grandmother ========================================================================= Date: Fri, 9 Jan 1998 19:18:34 +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!

Jenn, sorry to hear about the stress Joe is experiencing. It's not easy to be a doctor, I have a friend who's married to one. Adding a child to the picture increases the difficulties, not to mention having a child with physical differences. I can relate all of the stress relievers I have, but they are "female" oriented...a hot bubble bath, a good book, tension tamer teas, a walk in the woods, baking and my favorite, writing..(now you know my secret!). One of my friends at work (a male) relaxes by swinging a hammer, with a specific target. The one universal stress reliever is God. He can bare all we give Him! Hope this helps.

Hope Felips tonsil removal went well!

Joanne, in Ohio ========================================================================= Date: Fri, 9 Jan 1998 19:29:09 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: MHTeach102 <MHTeach102@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Re: Aperts cover girl, and other things Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Marianne and all,

Thanks for the words of encouragement. I will try and update everyone more often. BJ is holding his own for today. He hasn't needed a heavy dose of pain meds yet today. He seems to be resting fairly comfortably. We are doing the best we can to keep our spirits up but it hasn't been easy. There have been days it seems that all I have the emotional energy to do is turn the computer on. Then it becomes a problem of not knowing what to say. We have had a cut back in the number of nursing hours BJ has gotten, so we have been doing more of it our selves, this seems to be taking its toll as well.

I am embarassed and ashamed to admit it but at sometimes I even find myself getting angry and Jealous as others talk about the milestones of their kids. I know that it isn't right but I don't know exactly what to do about it. It seems David and I are again dealing with issues and feelings that we had when BJ was first born. I know in time it gets easier and that we will survive this. But right now it is still a little scary.

We are doing the best we can to keep our faith up, and I am starting feel like I am getting a handle on all these new feelings, fears and issues. When ever I begin to get discouraged I just remember how much BJ has brought into our lives. I know that God wounever give anyone more than they can handle, but I wonder sometimes if he has me confused with someone else. But at the same time I am so grateful that we are not alone. I cannot tell everyone how much I appreciate your support. When I am writing the list I always seem to feel a little better, at least not so alone. I will go now I am starting to ramble again.

Marjorie Harmon

The BJ update,

Holding on still, seems to be fighting and is amazing us and the doctors everyday. He is working so hard on his therapies. He is trying to hold his head up and is beginning to regain use of his jaw and swallowing. He is drooling less and he seems to be happier. I have even heard him laugh a couple times. Usually when David is crashing his truck into his wheelchair. He is such a fighter and someday and somehow he will beat this. ========================================================================= Date: Fri, 9 Jan 1998 17:52:28 -0700 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: baconsmith <bluenose@TELUSPLANET.NET> Subject: Bj and his family Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

Dear Marjorie David Bj and family, I don't know how in heck you do it. I think about BJ a lot and wonder how you all are getting on. I am glad you find a bit of energy to give us updates, although, I wouldn't want to add that to your daily burden. Suffice to say that we appreciate the updates whenever they come in and in between times, we are sending lots of positive energy down to San Antonio for BJ. Keep up the good fight, BJ. You are so strong and have such stamina to have come this far. Bless you and your family.

Pat and the Peach and family in Calgary email to: bluenose@telusplanet.net We are all worms, but I do believe that I am a glow-worm." Winston Churchill ========================================================================= Date: Fri, 9 Jan 1998 20:09:28 -0600 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Ize <ize@TACOMA.CEATLABS.OKSTATE.EDU> Subject: Felipe's Update MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

First of all I want to thank you Joanne for the best wishes on Felipe's surgery and everybody else that was thinking of him today. The surgery started this morning at 8:35 and finished at 8:50. Everything was fine, the doctor decided to send us home because Felipe was fine and drinking water. There is no better place like home specially when you are recovering from the surgery. We noticed that when Felipe is in the hospital, he fills bad and he hates to be around doctors. When the nurses stop by just to see how he is doing, he starts to cry and he hugs me to fill segure. He can smells a doctor from miles away... The roughs days will come after the surgery, as the doctor said, because he will fill pain and so on. We hope that he may surprise the doctor, who knows? As I've said before he is drinking water but not voluntarily, I have to use a siringer to give him the water. The only time that he complains is the time that I have to give him water. Otherwise he watches Barney or sleeps.

Best wishes to everybody and specially for BJ and Family!

The Ize Family from Oklahoma. ========================================================================= Date: Fri, 9 Jan 1998 22:08:09 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jenngram <Jenngram@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Re: SONYA'S UPDATE Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Hello Sonya..and welcome...I know the decisions are hard ones..and being away from home makes it 10 times harder. I have heard wonderful things about Dallas from Pparents residing in New Orleans (where we are from), and from families in Houston ..We chose to stay here in Tampa..partly b/c its important for my husband (whose in his 3rd year..2nd to last!!!! YEAH!!!! of medical school) to be involved in his care, and b/c we love our plastic surgeon and neurosurgeon. Teir team could use some coordination, most of the members I like..the ENT is our exception..thers something about him...Anyway, trust in your decisions as they are right for you..

Jenn (St. Petersburg, FL) ========================================================================= Date: Fri, 9 Jan 1998 22:08:25 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Leanne Maclean <lmaclean@NETCOM.CA> Subject: Glasses MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii; name=""

Hi,

My daughter, Amy, (5 1/2 years) has been wearing glasses since she was 14 months old. Her first set coincided with a hand surgery and I thought it was great! Three weeks with casts on both hands and she wouldn't be capable of getting them off while she was getting used to wearing them (I know, mean mom, but practical!!!!!). Anyway she was learning to walk at the same time and broke them on the edge of the window seal when she toppled over a few days after she got them. She actually broke them five times that first year, thank goodness for a fantastic glasses store that replaced them free of charge each time.

Amy is now on her third pair of glasses. I know how difficult they are to fit. The first set were plastic frames and seemed to fit the best. Now that 'wires' are in and a nice looking set of plastic frames are impossible to find she has been wearing wires. This last set she got in the fall after her midface surgery. We were in there at least 7 times asking for them to refit them. We changed the nose rests a few times, tried the wires that go around the ears and the old strap around the back as well. Finally we have found a combination that seems to work for her. The wire around the ears combined with an elastic strap that velcros at the back. (You can actually buy a strap that velcros - of course it took a couple of trips before we found that out!)

As far as getting her to keep them on I would agree that withholding something that she wants to do until she wears them is the avenue to go. We do that regularly with Amy and it works well. It doesn't have to come across as something nasty...a statement such as "As soon as you put your glasses on then you (or we) can do this" works very well. What is important is the consistency both in having her wear her glasses and in you not giving in when it is a battle. Amy had to wear an eye patch for six months and hated it. When it began to be a routine she still didn't like it but accepted it. Later we had the option of patching her eye all day a few days a week or patching it daily for a few hours every day. We opted for the few hours every day or we knew we would regress to the struggle stage again.

I guess my only other suggestion is to try to find a few different activities or 'rewards' to use. You don't want to be left out on a limb when she has decided that the computer isn't worth the hassle of wearing her glasses. Reading a book together, playdough, perhaps watching a show on TV or even going outside to play should work. I swore I would never use food for a reward and ended up using Smarties for toilet training.....it worked and she's not addicted!

Amy got upset last night when I took her glasses off to clean them. She realizes now how much better she sees with them on!

Sorry for being so loooong winded!

Best of luck, Leanne Alberta, Canada

stage. ========================================================================= Date: Fri, 9 Jan 1998 21:49:58 -0600 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Chad & Denise Graham <cgraham@INFOAVE.NET> Subject: SONYA'S UPDATE MIME-version: 1.0 Content-type: text/plain; charset="us-ascii"

Sonya, I am wishing you have some stored up sleep for Blake's surgery. I know you wish to not go through this again, but you will be strong for him and come through it like a super mom. I will be thinking of you and your family. Our surgery is Jan. 23. We hope this is the last one for a while. We will have 3 fingers and a thumb on both hands. I will be glad when it is over. The hard part is when the cast comes off and it is time to wrap and torture him for a couple of months. During surgery, our surgeon is supposed to put some of Daryl's bone and tissue in these tubes for me to send to Washington. Dr. Cunningham is going to grow Daryl's DNA and study it for different things. For one, we are hoping to find out where Daryl's chromosonal defect is. I will keep you posted on what we find out. I am looking foward to getting to meet you! Please, whenever you are in Nashville or Murfreesboro and you have a minute to spare, call me and I will try to get up there. I will go for now! Glad you finally got to write to us all!!

God Bless, Denise Graham ========================================================================= Date: Fri, 9 Jan 1998 23:36:01 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "Wendy S. Pak" <Wendy_S._Pak@RIDLEY.ON.CA> Subject: Re(2): Aperts cover girl, and other things Comments: To: MHTeach102@AOL.COM Comments: cc: owner-apert@LISTSERV.AOL.COM In-Reply-To: <89653f64.34b6c0d6@aol.com> MIME-Version: 1.0 Content-type: text/plain; charset=iso-8859-1 Content-Transfer-Encoding: 8bit

Marjorie & Family,

Your whole family are strong fighters and I'm sure BJ gets a lot of strength from that. Keep up the spirits. I know last year when I was having a tough time in a new job, dealing with an ex, and all the other stresses I experienced, I was told that time will heal. Of course, it was hard but now a year and a half later, I am much more at peace and time really has healed. During that time I did do a lot of e-mailing and it really helped me work through my emotions and it helped me keep perspective on things. I am happy to say I am better this year and adjusting well. I have found that I e-mail a lot less to my friends with my problems now so I really have to start e-mailing with good news too or just to say hello. I feel bad that I am not keeping in touch with them and I realized that it was a form of healing for me. So keep writing when you can and when you feel up to it. You know you have lots of support out here in cyberspace.

On another note, does anyone know when there is another conference or an Apert get together. My sister is really eager to meet others with Aperts. It is hard for me to e-mail for her since I live in St. Catharines, Ontario and she lives in Thunder Bay, Ontario. We will definitely try to go to the next get together as long as I can fit it in my schedule. My sister just got e-mail so she will start becoming a part of the list server. I will forward her address when I get it and she has join the list server. She is not as proficient with her writing as most people with Aperts her age. She is 26.

Take care all,

Wendy Pak ========================================================================= Date: Fri, 9 Jan 1998 21:21:55 -0800 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Lark Jarvis <lark@INVOLVED.COM> Subject: Wendy--adults connecting In-Reply-To: <fc.000f4e8b00161dd03b9aca0014925d0d.161e12@ridley.on.ca> Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

Wendy, You asked, n another note, does anyone know when there is another conference or an >Apert get together. My sister is really eager to meet others with Aperts. >It is hard for me to e-mail for her since I live in St. Catharines, Ontario >and she lives in Thunder Bay, Ontario. We will definitely try to go to the >next get together as long as I can fit it in my schedule. My sister just >got e-mail so she will start becoming a part of the list server. I will >forward her address when I get it and she has join the list server. She is >not as proficient with her writing as most people with Aperts her age. She >is 26. > >Take care all,

Unfortunately, from what I've heard, the AboutFace conference that used to happen every year in conjuction with the American Cleft Palate Craniofacial Association professional's meeting isn't going to happen again after this past year. (Not sure why--dwindling interest/attendance??)

But, in terms of connecting with other adults with all sorts of different craniofacial anomalies, there's an adults' section now on the Wide Smiles cleft webpage at http://www.widesmiles.org

And, nothing formal yet, but I and several other adults (Penny of the Crouzons' list included! ;) have been talking for a while now about putting together our own conference, most likely somewhere in the Pacific NW, either here in Portland (where I have some event-planning contacts), or in Seattle, where Penny is . . . . I think there is only so much healing that can be done without being together face to face! So, if she's at all interested in being part of the planning for the adult event, whenever it finally happens, please have her email me! We're wanting input from as many different people as possible--A conference (retreat, really . . . something that focuses on healing and growth) for adults has never been done before, so it's up to us to say what we need, and then plan it! :) Lark in Portland (29, bilateral cleft lip/palate) ========================================================================= Date: Fri, 9 Jan 1998 15:21:09 -0800 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Robyn Johnston <robyn@ORDATA.COM> Subject: Re: Aperts cover girl, and other things Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

>Another bright spot today- Evan got his stents out!! Now dinner doesn't come >pouring out his right nostril (the chocolate pudding was the worst!! Ugh). He >SO much happier! The grin hasn't left his face!!

Marianne and Evan, way to go!!! Congrats. Hope that little nose of his is better now! One more small hurdle overcome!

Hugs, Robyn & the Plum ========================================================================= Date: Fri, 9 Jan 1998 15:21:07 -0800 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Robyn Johnston <robyn@ORDATA.COM> Subject: Re: Glasses - help Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

>if he ever did need glasses they'd have to tape them down >from his forehead!!

Now Marianne, That's not a bad idea! ;-) It might be easier than those darned straps. :-)

Thanks for the suggestions. We will try. I like the stars sticker idea. Plum doesn't like chocolate though. Weird huh? I keep wondering if she is really my kid because I am such a chocoholic!!! Please do keep us in mind when you talk to your friend. It is so odd that she hates putting them on so badly but, once they are on she is ok with them. ???

Hugs, Robyn

At 01:53 AM 1/9/98 EST, you wrote: >In a message dated 98-01-08 19:47:51 EST, you write: > ><< She loves using the computer, but > I am not letting her use it today until her glasses go on >> >This sounds good. Can you distract her some with an impending favorite >activity if the glasses go on?? We've had to try all kinds of distraction to >keep Evan from wailing and creating gallons of additional secretions when we >first put on his Passy-Muir (speaking) valve. Or how about a sticker chart or >M&M's - all those tricks parents have used for centuries for toilet training?? >They have really cute M&M dispensers now. My best friend's daughter (now 8) >had to wear glasses as an infant/toddler for strabismus- I'll check with her >when we talk next (she's in Rochester, NY) and see what worked for Meredith. >After Evan's last cranio surgery, we joked that they had brought out his >forehead so far that if he ever did need glasses they'd have to tape them down >from his forehead!! > >Good luck! >Marianne > ========================================================================= Date: Fri, 9 Jan 1998 15:21:10 -0800 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Robyn Johnston <robyn@ORDATA.COM> Subject: Re: To the Harmons Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

Marjorie,

No apologies needed. Do not worry about people getting down because of you. There are a lot of people on this list who really care about you, BJ and your family. We just like to hear from you, good or bad, and like has been said already, we worry when we don't hear from you every once in a while. Thank you for taking the time. You all are always in our prayers. Hugs, Robyn

At 07:12 PM 1/8/98 EST, you wrote: >Sorry about that, > >Been meaning to update more often but can't seem to find the emotional >strength anymore. Everyone sounds like they are doing so well and I don't want >people getting down just because of us. > >The BJ update.... > It is hard to say how we are doing, we don't know and the doctors don't >know. There are days that BJ seems to be recovering nicely. He has been alert >and aware on several occasions. There are also days where we don't know how is >still alive. All of this has really began to take it's toll on all of us. I >always hoped that as soon as BJ made it home he would really begin to recover >quickly. That just doesn't seem to be happening and it is hard for me to >accept. > > Today has been one of those half-way days. He was able to sit up for a >little while, and he even drank some of his special milkshake. (I wouldn't >touch it from the smell). But at the same time, today he needed the vent for >most of the day and was having enough pain to need morphine. So I really don't >know. But we keep on keeping on, and are doing the best we can. > >Once again I apologize for not updating more. And I will try to do better. > >Marjorie Harmon > ========================================================================= Date: Fri, 9 Jan 1998 15:21:12 -0800 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Robyn Johnston <robyn@ORDATA.COM> Subject: Re: Glasses - help Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

Jenn, thanks. Gosh you never know if you are doing them a favor or creating another battle??!!! I hope this phase passes quickly! Yes, I agree about the eyes and the computer - and she loves to play on it! So no glasses no computer! Uggghhh! ;-/

I just wish we could find a specialist who could fit a toddlers face with a CF condition. I think that is the root of the problem. These glasses have just been a royal pain in the "you know where" because they don't fit properly. If Jordan needs them, the key is to get glasses that fit!

Hugs, Robyn

At 07:41 AM 1/9/98 EST, you wrote: >Robyn, > >I think the idea of not using the computer ubtil glasses are on is a good >idea..esp b/c it involves using the eyes..same as TV or reading a book..as far >as child psych..no real knowledge here..onlt not to use food or exercise as a >reward/punishment. I think you're on the right track..hmmm mmore fun for us >down the road????!!!! > >Jenn > ========================================================================= Date: Fri, 9 Jan 1998 15:23:23 -0800 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Robyn Johnston <robyn@ORDATA.COM> Subject: Re: SONYA'S UPDATE Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

Gaylan, I hope you don't mind, can you please forward this to Sonya?...

Sonya,

Wow! Dejavu! Your story mimics our story almost to a T! Except you have been through 4 years of searching where we have only been through 1 1/2. I will keep this short, but we have been unhappy with the "overall" experience of the hospitals and clinics that we have in our state, so now we are trying to go outside of our state as well. It is worth it! I wan't to wish you, Blake and your family the best of luck with his 3rd Cr. V. surgery. I have not done the presurgery programs at the hospital of which you mention. I hope to hear from you again on the list, but if not, I know Gaylan will keep us updated!!! :-)

One Question: What is ACPA and how do you contact them. It sounds like something I/we would be interested in.

Good luck again, Robyn & the Plum Eugene, OR ========================================================================= Date: Sat, 10 Jan 1998 08:04:41 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jenngram <Jenngram@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Re: Glasses - help Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Robyn, This is prob. a dumb question, but is your optomologist part of the CF team? I know our is and he has literature in his office about fitting kids w/ special needs. Perhaps a "Childrens" optomologist or someone of the like may have ideas. However, I think your doing it the right way..and in time..like all strugles..this too shall pass

Have a good one Jenn ========================================================================= Date: Sat, 10 Jan 1998 08:16:43 +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>

Wendy, Lark and everyone else!

I would love to be a part of an -"A conference (retreat, really . . .something that focuses on healing and growth) for adults has never been done before". Could I pursuade you to have it closer to Ohio??? With my uncertain job situation, my finances are as uncertain. My hopes are that I will be set with a decent job before to long (from my lips to God's ears) and traveling later on might be realistic! Keep me in mind, I'm at least interested in attending and will do what I can to help plan.

Marjorie and Family,

In all honesty, I don't know what to say that hasn't already been said. We are all here for you. I admire your honesty and strength. It must be hard to hear other's accomplishments when you are facing such a rough road. Focus on the gifts that only BJ gives and gives only to you. These are the milestones no one else can have or give.

Joanne, in Ohio ========================================================================= Date: Sat, 10 Jan 1998 08:44:37 +0000 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Comments: Authenticated sender is <jgibson2@POP.erols.com> From: Judy Gibson <jgibson2@EROLS.COM> Subject: Re: Aperts cover girl, and other things In-Reply-To: <89653f64.34b6c0d6@aol.com> MIME-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7BIT

Marjorie, I think it's perfectly normal for you to feel angry and jealous right now. Things should be going so much better for BJ -- this has been terribly difficult for all of you. I pray that he will continue to improve. How wonderful that you've gotten to hear him laugh again!

Judy ========================================================================= Date: Sat, 10 Jan 1998 10:57:45 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Yonstein <Yonstein@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Re: Aperts cover girl, and other things Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Dear Marjorie:

Please don't feel ashamed about getting angry and jealous of our kids milestones and accomplishments. I think that's very natural. BJ is having his own accomplishments every day as he keeps fighting. That's what we keep focusing on and he is an inspiration to us and so are you and the rest of your family.

As far as wondering if God has you confused with someone else, I smiled when I read that because the past five months I've wondered the same thing myself.

Keeping you in our thoughts and prayers.

Janine Krebs and family ========================================================================= Date: Sat, 10 Jan 1998 11:10:07 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Yonstein <Yonstein@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Thank you, etc. Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Hello Everyone:

Thank you all for your wishes for Emily. She did great. The surgery was very short. Her ears had more fluid in them than her ENT tought, so it was a good thing we did the tubes. We also had the ABR hearing test done while under the anesthesia as recommened here. We are awaiting the results from the technician on that. She was back to herself very quickly,, without any vomiting I am happy to report.

Bob, glad to hear Krista is doing well and Ize, glad to hear Felipe is doing well. Also, glad to hear that the stents are out and Evan is ok.

Hope BJ is continuing to improve and hang in there.

To anyone else I forgot having surgery or just completed, good luck.

Janine ========================================================================= Date: Sat, 10 Jan 1998 12:40:28 -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: age/Dr. Sargent MIME-version: 1.0 Content-type: text/plain; charset="us-ascii"

Jenn, Thanks for the age info. I am keeping a journal on the parents I find with the age under 35 and being their first child. I appreciate you thinking of us. Maybe if we are down close or you are up this way we could get together. When you look in the Craniofacial book from Chattanooga, in the aperts section, the complex syndactyly hand in the picture is Daryl's hand. They wanted to use Daryl's cranial before and after pictures but the book went before publication just before we came back for our 6 month checkup after surgery. He will be in their next book in few years. We love Dr. Sargent. Terri Farmer is the sweetest thing to talk to. Have you spoken with her yet? What we also like about Chattanooga is that Dr. Sargent takes care of Daryl, and Terri & Norma take care of us. I know everyone has different needs from a craniofacial team. I am just lucky we found the one for us. There are several good teams out there. You just have to seek and search till you find one that makes you feel good about your decisions. Talk to you later!!

Denise Graham ========================================================================= Date: Sat, 10 Jan 1998 11:39:56 -0800 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Lark Jarvis <lark@INVOLVED.COM> Subject: Grant sources, etc? In-Reply-To: <19980110.081646.9798.0.chanan8@juno.com> Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

Joanne, You're right--I wish Portland were closer to the middle of the country, and easier to fly into! Who knows how things will actually work, but another part of the picture is--it would be great if we could come up with some grant money, some donated frequent flier miles, that sort of thing . . . . It's a very workable, likely idea to get either of those, but the thing that's crucial where fund solicitation comes in is STARTING EARLY ENOUGH! (Are you any good at grant writing?? ;) I know AboutFace always put out info for parents who were trying to raise money to make it to their conferences (when they were still happening), and they had lots of people who were successful at it, so it can be done . . . . I have also heard, for example, that Alaska Air is very generous when it comes to things like that ((trouble is, they're on the West Coast already . . . ) The crummy thing about an adults' retreat is that the people who would most like/need to be there are the ones who could least afford it . . . . When we finally get a preliminary survey out to adults, I guess we'll just have to see where the most responses are from, and go from there, really . . . Lark (stressed out over my new job :o ) ========================================================================= Date: Sat, 10 Jan 1998 21:23:01 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: GSieb91515 <GSieb91515@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Re: post surg. sick Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Hi Sherri,

You sound like a very special mom as well as your daughter. Hope to hear more from you. Are you all happy with the toe separations that were done? We have heard so many negative comments on doing the toes I was just wandering what your experience has been so far.

Best Wishes,

Brenda in Houston ========================================================================= Date: Sat, 10 Jan 1998 21:52:17 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: GSieb91515 <GSieb91515@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Re: SONYA'S UPDATE Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Sonya,

Best of luck to all of you. I know Blake will do great. Dr. Feuron has a very good reputation. Our PS has even recommended that we see him if we want to get another opinion. Basically, our cranial surgeon in Houston agreed that Jonathan could benefit from a total vault, but he would prefer to do it at a later time than the folks in Chatanooga for various reasons. We are of the same opinion at this point. We have often wondered if we should be going to the Dallas team, but have decided that as long as we are comfy with our guys we would prefer not to travel (even though it's only about 4 hrs. away). I know you have had a lot on your plate and will be praying for your strength during Blake's surgery. Your mom is great. I've enjoyed talking with her.

Brenda GSieb91515@aol.com ========================================================================= Date: Sat, 10 Jan 1998 22:21:51 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: GSieb91515 <GSieb91515@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Re: Aperts cover girl, and other things Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Marianne,

Congrats on the stents. I had such a vision of Evan's dinner "problems". It wasn't a pretty sight. Anyway, glad that part is over for you.

Brenda

p.s. do you have a scanner. If so, it would be neat to see the little girl you mentioned. ========================================================================= Date: Sun, 11 Jan 1998 00:06:04 -0800 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "MARK KURAS. Our youngest son Michael, known to us as" <kurasmp@BELLATLANTIC.NET> Subject: Re: Hi from the Yonkins MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

Jim and Kelly, So glad you wrote. I'm sure your holidays were ones you'll never forget!! A house in the mountains sound very exciting, and I'm sure it beats the excitment of New Jersey. Paula and I just got home from two weeks in california. We left the day after X-mas, and now are trying to get all the decorations down. The vacation was great, but as expected both the kids got sick. Michael unfortunately had his cold turn into phemoenia. It was not as bad as it could have been. He slept most of the time,and as soon as we got the anitbiotics he recovered quickly. He even made it to Disneyland on our last day. What a trooper he has become. We just had our visit in November. Everything looks good for Michael, but all are still concerned about his breathing. We are suppose to have another sleep study soon to determine how he's doing. Dr Whitaker even suggested doing a midface early to aid in his breathing. Before you come out, give us a call, maybe we can meet at the hospital for lunch. Hope the tranition is smooth please call when you get a chance.

Mark Paula, Timothy and Michael ========================================================================= Date: Sun, 11 Jan 1998 14:59:45 +1100 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Carol Hamzsak <carolh@HOTKEY.NET.AU> Subject: Re post surg sick MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

Hi Granny Sherri

My name is Carol and Im from Victoria in Australia yes way over here. I also have a little girl who is 2 years and 1/2 and has her wonderful days and also is showing those lovely signs of the terrible two's WOW can she throw some wobblies. I have experienced Ashleigh being sick alot and catching anything that goes around it just seems sometimes that Im at the doctors every fortnight sometimes, I must admit (touch wood) that for this summer so far she has been the healthiest she has ever been which is great but every winter so far we have the trip to hospital with the ambulance and all the panic stations first year was with croup she couldn't breath and this year was with RSV a respiratory virus which they first thought was pneuomonia, we were on our way to hospital and she had stopped breathing - gee! this doesn't bring out the good side of me. I have said to our doctors here so what will happen next year? She always has a runny nose which and it gets so blocked up that she cannot breath. As I am also a working Mum I find it really hard because I dont want to be at work and worry and theres only so much time you can take of work I'm lucky that my husband is her main carer ar home while I'm at work which really helps but I wonder when she will get stronger and all these things she catches all the time will stop I just get so sick of going to the doctors all the time and I hate to see her ill so often. I have also felt the same about Im so gald Ashleigh was born to us because we love her so much.

Bye for now Carol ========================================================================= Date: Sun, 11 Jan 1998 00:28:13 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Camous <Camous@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Re: Aperts cover girl, and other things Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

No scanner but would be happy to mail you a copy!! Maybe Santa will bring one next year (with a color printer, too, please!!) ;)

Marianne ========================================================================= Date: Sat, 10 Jan 1998 21:19:51 +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: Re: Grant sources, etc?

Lark,

New job?? Whacha up to? Pardon me if you have talked about this before, my memory lacks. When I read your message and the part about grant writing, I couldn't help but let out a huge groan. At the literacy center where I am now working (will be leaving soon) there is an opening for a grant writer. I would snag it in an instant, but haven't had a lot of training. My director knows this and won't hire me b/c of that! She can't afford to train me. Doesn't that just stink? To answer your question - I was there when a lot of the grants were written, seen a few but never tried my hand at it. If I understand correctly, it's a matter of being creative and persuasive about your cause. Correct me if I'm wrong. Not to brag, but my forte is writing. If you could share with me the particulars, I am willing to give it a shot.

Just wanted to elaborate on the job and the lack thereof. Today was a bummer of a day. I found out yesterday that there is next to zero of a chance that my current employer will/can hire me once my VISTA (Volunteer In Service To America) position is over (end of February). When I became a VISTA, I was hoping I was placed in a agency that would reward my dedication and service with a permanent position. At least that's the way I thought it was supposed to work??? I work with two agencies and both of them dissappointed me. I was really depressed today. Spent most of the day in bed. The thought of not having a job competes with the thought of being 32 and not having a career in trying to depress me the most. I'm tired of proving myself and tired of settling with jobs I really don't want to do. I "yell" at myself for making what seems to be poor choices in "career" moves. I yell at myself for not having this, that or the other that I obviously lack to make it in this world. When I'm down like this, all of my problems, even the minute ones are magnified 1000 times.

I read what I have written and think to myself, geez Joanne, get up off your rear, slap on the determination, grit and everything else it takes to be successful. It's not that easy. ========================================================================= Date: Sun, 11 Jan 1998 00:05:22 -0800 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Robyn Johnston <robyn@ORDATA.COM> Subject: Re: Glasses - help Mime-Version: 1.0 Content-Type: text/enriched; charset="us-ascii"

Jenn,

Not a dumb question at all, You bring up a very good point. We are in the process of trying to convince our insurance Co (HMO) that we need to see an organized, experienced CF team from out of state on a REGULAR basis. The ophthalmologist we see is a very nice person but, he doesn't know much about CF issues. Only the actual eye problems. We have not actually seen a CF pediatric ophthalmologist at all. Just a regular pediatric ophthalmologist who has seen a few CF patients. Unfortunately there is not a true pediatric CF team here in Oregon.

Actually while I was on the Apert/Crouzon chat last night, a nice woman from the Wide smiles list server had a couple of good suggestions as well. She first suggested Brenna get a nose job :-) Probably someday ;-) This womans daughter was born with a itty bitty nose with her syndrome. They gave her a nose job (built it up) at 6 months when they repaired her cleft! She also suggested a silicone, one piece, nose piece that doesn't slip down a childs nose. I will have to do some looking around, but it sounds promising. It is worth a try!!! I'm sure this is just a phase as you and others say. <italic>thank goodness!!!</italic>

Sincerely,

Robyn - in very rainey and close to freezing Oregon

At 08:04 AM 1/10/98 EST, you wrote:

>Robyn,

>This is prob. a dumb question, but is your optomologist part of the CF team? I

>know our is and he has literature in his office about fitting kids w/ special

>needs. Perhaps a "Childrens" optomologist or someone of the like may have

>ideas. However, I think your doing it the right way..and in time..like all

>strugles..this too shall pass

>

>

>Have a good one

>Jenn

> ========================================================================= Date: Sun, 11 Jan 1998 12:03:06 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Camous <Camous@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Re: Grant sources, etc? Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

In a message dated 98-01-11 04:31:05 EST, you write:

<< would snag it in an instant, but haven't had a lot of training. My director knows this and won't hire me b/c of that! She can't afford to train me. Doesn't that just stink? To answer your question - I was there when a lot of the grants were written, seen a few but never tried my hand at it. If I understand correctly, it's a matter of being creative and persuasive about your cause. Correct me if I'm wrong. Not to brag, but my forte is writing. If you could share with me the particulars, I am willing to give it a shot. >> I've seen several courses, books, etc about grant writing. It's bread and butter in academe and the public service sector these days. How feasible is it to get some training in this area and go back to her with a deal for her to give you a try?? Or if you have interest in this area try to find even a clerical job that entails working with someone writing grants and consider it an "apprenticeship". It takes a specific kind of writing and is almost formulaic. You need to know what the granting body is looking for and give it to them, I taught in a Physician Assistant program where our department chair wrote the start-up grant and was always cranking out these things. She had the acronym SMART but now I can't remember exactly what it stood for. I remember that it needs to be focused, answer a need, and have measurable results. As I unpack and organize my files, I'll keep an eye open for anything on this topic.

Hang in there- you often never know where these experiences will take you!! Start looking for similar organizations who would value your experience. Have you tried recruiters?? Online job search?? Use your current funk to pamper yourself a bit and store energy for the big job search. You have the personality and drive to do it!!

Marianne (in rainy California! but you don't have to shovel rain!) GoNiners! ========================================================================= Date: Sun, 11 Jan 1998 12:15:12 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Camous <Camous@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Re: Glasses - help Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

In a message dated 98-01-11 05:35:33 EST, you write:

<< The ophthalmologist we see is a very nice person but, he doesn't know much about CF issues. Only the actual eye problems. >> Having been with two CF teams now, our experience is that the role of the ophtho is to keep track of optic nerve problems as this is a sensitive indicator of increased intracranial pressure, manage strabismus (disorders in eye muscles/tracking), as well as the usual vision correction as needed. Specialists in Ped optho and strabismus are few so wouldn't necessarily be well-utilized as part of the "team" ie are so busy that time spent in team meetings etc would not be productive. The key here is a PEDIATRIC Ophthalmologist as they should have the most experience with the issues our kids face.

I recently expressed my frustration to a case manager from Stanford over the fact that is has taken over 6 months to get straight information and decisions from our insurance carriers over specific coverage issues around our move. She recently sent me a list of health care advocacy groups which I must admit I haven't yet had time to look at closely. I will try to find it today-(an organizing, filing day!!) and pass along anything that may be helpful to you in dealing with these people!!

Marianne- it's gray and rainy here too! Go Niners! ========================================================================= Date: Sun, 11 Jan 1998 12:26:34 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: JPCSLC <JPCSLC@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Re: post surg. sick Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Brenda,

hey how are you? In reguards to Katey's toe seperations: Of course you know that they only seperated the big toes out! they look very good, too, but they seem to point inward still! I think this plays an important role w/ her balance! But we are dealing with it and slowly but surely she is walking and attempting to run faster and faster!! I only wish they could do something about the other toes, but i trust the doctors when they say it's just not safe! Besides all that Katey is doing fairly well, she is just getting over the flu, imagine that! Also, I am very new to this listserver and with alot of different terminolgy w/other aperts so what does a total vault w/ your son jonathan exactly mean??I really want to learn about all the different extremes of aperts. thanks!!

jenn s (granny sherri's daughter) ========================================================================= Date: Sun, 11 Jan 1998 14:24:15 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Colleen Jones <coljones@PTDPROLOG.NET> Subject: central pennsylvania MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit

Hello from the quiet Jones family. I never get the time to get on the computer to send messages. We too live in central PA (Middleburg, near Selinsgrove) and would like to get together with anyone close by. Jim and Kelly, glad to hear you made it back home to Lewisburg. I'm sure the move was busy with it being Holiday time. We have been busy with work and surgery. Jacob (18 mos) had his forehead advancement in Aug. at CHOP and just had his second hand surgery (left hand, pointer and pinkie release) on Dec. 16 at Geisinger. Healing is not progressing as well as his right hand did. Attribute it to the fact that he won't stay off of it. He seems to have much more swelling this time around, so now we have to keep him from crawling on it. Poor kid, he finally learns to crawl and we have to stop him. He is also scheduled for his cleft palate repair on Feb. 4. We are also expecting the new baby any day now. I guess we will be busy for awhile!!! Anyone in central PA, we should try to plan a get together at some time. I know some of us are only an hour away from each other! Summer at Knoebels amusement park might be a neat idea!! If interested let me know and maybe in my sparetime, I'll get it together. Home phone# 717-837-1752. ========================================================================= Date: Sun, 11 Jan 1998 14:47:00 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Yonstein <Yonstein@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Re: central pennsylvania Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Dear Colleen:

Hi, from Janine and the Krebs clan in N.Y. I was wondering how far you are in PA from New York City. Would love to be involved in a get-together if it happens.

Sounds like you have a lot on your plate right now. Hope all goes well with the new baby. Let us know.

Hope Jacob is recovering from his hand surgery. Then on to the cleft palate. Emily (5 months) won't be having that for a while. I think we might try to combine the pinky release with that surgery. Any ideas on that?

Take Care

Janine ========================================================================= Date: Sun, 11 Jan 1998 20:11:08 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Camous <Camous@AOL.COM> Organization: AOL (http://www.aol.com) Subject: the insurance battle Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

I found the list but I send it with this caveat; I have not checked any of it out . It may or may not be helpful, relevant, etc- here goes: 1) American Medical Consumers- For-profit group coaches consumers on how to negotiate with health care providers (818) 957-3508 2) Calif Dep't of Corporations- For the HMO Consumer services Unit Hotline call (800) 400-0815 3) Center for Health Care Rights For information on various programs call (213) 383-4519 or write to 520 South Lafayette Park Place, Suite 214, Los Angeles, CA 90057 4) Empower! The Managed Care Patient Advocate: For consumer info check the web site at www.comed.com/empower 5) Insweb: The Worldwide Insurance Center: For consumer information and other materials check the website at www.insweb.com 6) SafeTnet: The web site provides consumer information and answers questions about insurance, but does not sell insurance. Check the website at www.safetnet,com ========================================================================= Date: Sun, 11 Jan 1998 20:21:05 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: GSieb91515 <GSieb91515@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Re: post surg. sick Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Jenn,

Hi there! I didn't realize it was just the big toes done. That seems probably more likely for us. However, Jonathan's toes turn outward to some degree. We have been so involved in the other surgery decisions recently that we haven't been concentrating on the ortho stuff right now. He is walking all over the place (not by himself yet) by holding on to whatever or whomever is nearby. He doesn't want to be on the floor hardly at all anymore unless it's to get somewhere FAST. The total vault is (pardon my un-technical terminology) when they remove the entire skull and remodel it. Similar to the cranioplasty and forehead advancement only it's the entire skull. This is a little more tricky since they are dealing with the back of the head and alot more blood loss. A transfusion would be most likely, but I'm going to check into the Procrit that I just learned about from our group. We go to our 1st complete team evaluation tomorrow. It will be with the PS, dental and orthodontic, speech and maxiortho (?), ENT guys. We don't really have much of a problem in these areas yet so it seems a little early but I guess it's best. My main areas of concern at this stage are more with the cranio, and hand surgeon. I'm sure I will have lot's of questions when we return from the team tomorrow. My husband's brothers live in the Daytona area so we do try to get over there at least once a year. Maybe we could hook up during one of those times. I'm not ready for the Disney scene until Jonathan is walking and out of diapers. But I know there are lot's of neat places in Orlando to visit. Let me know if you need more specific details on the total vault and I will try to get some technical info from our surgeon. We have a new scanner but I haven't had a chance to learn how to use it yet . We just increased our hard drive as it was full so I was without for a few days and hope to get some real blocks of time to learn how to put this scanner to good use. I do have an article on the distraction procedure that I'd like to send out when I get it all figured out.

Take care,

Brenda ========================================================================= Date: Mon, 12 Jan 1998 13:20:35 +1100 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Carol Hamzsak <carolh@HOTKEY.NET.AU> Subject: Walking MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

Hi All

Does anyone know if age 21/2 is late for walking. My daughter Ashleigh is not walking as yet and is showing no signs of doing so. I dont know if this is due to not enough time on the foor or what it may be?? I am getting a very sore back from carrying her and my husband has a back problem so its hard for his as well. What may be the best thing that may help get to this stage as I am going crazy with this at the moment I feel that she will never walk. Life would be so much easier if she walked so I can take her outside with me more often in the garden instead of Ashleigh just sitting there in a pusher. I would love some suggestions or advise.

Carol (Sweltering here in Victoria,Australia) ========================================================================= Date: Sun, 11 Jan 1998 19:13:29 +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: Ooops!

Hello!

When I logged on today, my immediate reaction was - Oh God. I want to apologize for the self constructed pity party I had going on. The latter half of my last message was meant for me and the release of some unruly attitudes. I was going to transfer it to the printer and then trash it. It worked out for the good at least. I got some great advice from Marianne! Thank you! I planned on hitting the job placement agencies tomorrow morning (Monday). I have been waiting to hear what the final verdict was from my current director before I moved to much. I spoke with my co-worker and he said I have the abilities to write grants, and not much training would be necessary. We are wondering if our director just doesn't want to fork out the $$ for help? VISTAs are paid from the government and are totally free help for the nonprofits. I have been looking for a good excuse to visit a tantalizing bookstore I've missed since I moved. Looking for a grant writing book sounds like a good enough excuse. I have "acquired" a non profit directory for the county and just powered up the computer to create a database of the ones I want to hit. (Had to check my mail first!) Part-time interview tomorrow morning. Hope this leads to something!

Jones family, let me know when, where, and how I can help plan a get together. If you aren't too far away from Dayton, OH, I'd like to consider joining you.

Joanne in Ohio. Snow? What's that? ========================================================================= Date: Sun, 11 Jan 1998 22:38:42 -0800 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Robyn Johnston <robyn@ORDATA.COM> Subject: Re: the insurance battle Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

Mariane, Thanks for this info. I really appreciate you taking the time to post this. This is good stuff if we (or anybody else) ever need it - hopefuly not :-) There is one more small piece of info (besides plain ol education), that I hope to use to persuade our insurance co. to let us see a CF team. It is called something like "Standards of Care for the CF patient" It is also available to the "Cleft patient". I think, but not 100% sure, it was designed by the Cleft field??? I have a copy which includes a great list of minimal standards of care that should be received by the patient. I plan on using it to get Brenna where she needs to go for the best possible care. We are also switching insurance Co's right now, ;-/ so one more thing to organize! But, our new Case manager seems real open to getting the best care for Brenna - even out of state! The old case manager was a little bit reserved about sending us out of state. Anyhow--- it should work out - or watch out !!! LOL >;-)

Anyways thanks for the tips! Take care, Robyn ========================================================================= Date: Mon, 12 Jan 1998 06:46:59 -0600 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Bob Horning <Bob.Horning@CORP.HONEYWELL.COM> Subject: Re: Walking

>From: Carol Hamzsak on Sun, Jan 11, 1998 9:16 PM >Subject: Walking > >Does anyone know if age 21/2 is late for walking....

Carol (Sweltering here in Victoria,Australia)

Krista (now 10 1/2) was about 2 1/2 when she finally started walking. That is on the late side. I think it's pretty typical for Apert's kids to walk late, although I I believe not quite as late as 2 1/2. Krista was getting close by age 2. She could walk along furniture or walk beside us if we held her hand. What do Ashleigh's doctor(s) say? Any advice from them?

Bob Horning (Bundling up for -15 F/-26 C tonight here in Minnesota :-) ) ========================================================================= Date: Mon, 12 Jan 1998 08:50:47 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jenngram <Jenngram@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Re: post surg. sick Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Brenda,

The other Jenn here..Good luck w/ the team meeting. We won't have one until March and I am curious about the goings on!! Oh, and they are planning on releasing Jordans big toe as well. You guys are from Houston, right? Well my parents are moving there..my dad is already there..in the next few months..so on a visit maybe we can get together.

Tomorrow we are going to see the neurosurgeon for our pre-op visit and I'm asking about the vault procedure..Jordans head seems flat in the back..perhaps due to positioning him on his back for all these months..who knows..I think its just his coronals that are fused though..How was Johnathans..head shape prior to surgery? And how were you and him w/ the results??..Glad to hear hes up walking about, I know all of the parents will groan when they hear this..but we are very anxious for Jordan to "get a move on"..I think I'd rather chas him than carry him..HA!!HA!! Words from and unexperienced mom, perhaps!!! Perhaps some floor moving would be in order first!!

Good Luck w/ the team meeting. Keep us posted on how it goes.

Jenn (St. Petersburg, FL) ========================================================================= Date: Mon, 12 Jan 1998 09:07:58 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Don Sears <dsears@SCRS.STATE.SC.US> Subject: FW: for your info MIME-Version: 1.0 Content-Type: text/plain; charset="iso-8859-1"

---------- From: Gaylann1[SMTP:Gaylann1@aol.com] Sent: Sunday, January 11, 1998 7:59 PM To: CatNDon@apert.org Subject: for your info

I think it's time to act!!! --Don

Dear Don, Thought I would forward this to you and let you make the decision to let Aperts listserv members know.

Take care, Gaylann

Sent: Wednesday, January 07, 1998 10:05 PM

To: Users Group

Subject: Please read and respond

Please read and respond to the following.

Your local telephone company has filed a proposal with the FCC to impose

per minute charges for your internet service. They contend that your usage

has or will hinder the operation of the telephone network. e-mail, in my

opinion, will diminish if users were required to pay additional per minute

charges. The FCC has created an email box for your comments, responses must

be received by February 13, 98.

Send your comments to ""isp@fcc.gov"" tell them what you think. Every phone

company is in on this one, and they are trying to sneak it in just under

the wire for litigation. Let everyone you know hear about this one. Get

e-mail address to everyone you can think of.

FCC E Mail address isp@fcc.gov

This is really important. If we have to pay for e-mail , the cost is going

to skyrocket. It's about the only thing now that is cost-effective. Please

make your opinions known to the FCC.

Michael E. Runyan

Biology Dept.

Lander University

Greenwood, SC 29649

Office 864-388-8385

Fax 864-388-8890

e-mail mrunyan@lander.edu ========================================================================= Date: Mon, 12 Jan 1998 09:12:13 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Unclbennie <Unclbennie@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Re: post surg. sick Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

In a message dated 98-01-12 09:01:08 EST, you write:

<< APERT@LISTSERV.AOL.COM >> Is anyone on this list serve from the Chicagoland area? If you are could you let me know what doctors you see, especially for general pediatric issues. I am looking for a pediatrician that has a good understanding of APERT's. Also if you could let me know who you use for plastic surgery, I would greatly appreciate the info. Karen ========================================================================= Date: Mon, 12 Jan 1998 13:49:02 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: JKram511 <JKram511@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Re: post surg. sick Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Karen- I am from the Chicago area but my grandson with Apert's lives in Boston.and is treated at Children's hospital there. However, I do know a family here who could give you the information you want. Since they are not on listserv,and may not wish their name and address sent to the whole list, please send me a direct email and I will send you their name, address and telephone number. The mother is the new head of the AboutFace chapter here.

Good luck,

Julia in Chicago ========================================================================= Date: Mon, 12 Jan 1998 12:39:38 -0800 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Penny Halverson <phalvers@U.WASHINGTON.EDU> Subject: Craniofacial Reconstruction: Plastic Surgeons Rally To Ensure Patient Coverage (fwd) MIME-Version: 1.0 Content-Type: MULTIPART/MIXED; BOUNDARY="0-1060077575-884637578=:18641"

This message is in MIME format. The first part should be readable text, while the remaining parts are likely unreadable without MIME-aware tools. Send mail to mime@docserver.cac.washington.edu for more info.

--0-1060077575-884637578=:18641 Content-Type: TEXT/PLAIN; CHARSET=us-ascii Content-ID: <Pine.ULT.3.95.980112123541.18641M@bank3.u.washington.edu>

http://www.plasticsurgery.org/mediactr/cranio.htm

> [Plastic Surgery Information Service] > [Media Center] > > Craniofacial Reconstruction: > Plastic surgeons Rally To Ensure Patient Coverage > > By Ann Saul > > "I'm not going to keep quiet any longer," says Laurie Hatfield, a high > school teacher in Texas. Frustration fills her voice as she describes > the battles she and her husband Jim, a football coach in the same > school district, have waged to get their self-covered insurance plan > to pay for their 18-year-old son Mike's craniofacial reconstructive > surgery. > > "Daily I see the agony of families like the Hatfields and the problems > they face," says Kenneth Salyer, MD, an ASPRS member and the > Hatfield's Dallas-based plastic surgeon. > > Dr. Salyer is also the past chair of the section of plastic surgery > for the American Academy of Pediatrics. "By the time they endure the > reconstructive surgery, families have already been through so much in > dealing with congenital defects or trauma. Just when they think the > worst is over, a different sort of battle starts." > > The incidence of insurance companies refusing to pay for craniofacial > reconstructive surgery is growing. Plastic surgeons say that companies > that have paid for these procedures in the past are now determining > that these surgeries are "cosmetic," not reconstructive. Rejections of > claims are being issued not only by HMOs but by many types of > insurance carriers. > > The change in attitude on coverage of these surgeries, many say, is > the result of extreme cost-cutting by managed care companies who have > already exhausted the "easy" cuts. Now, in an effort to satisfy > stockholders' expectations of increased profits, they are looking for > new ways to decrease costs. Medical decisions are being made on the > basis of the bottom line. > > However, coverage of an increasing number of stories by media like the > Los Angeles Times may be causing insurance companies to rethink their > rejection of claims. In some cases, just the threat of media coverage > seems to be prompting insurance companies to approve claims that had > previously been denied. > > The size of the problem > At present there is no way to know exactly how big the problem is, but > ASPRS is measuring the current situation among its membership. A > survey, recently distributed to ASPRS members, asked if claims have > been denied for any pediatric patients or if they experienced > difficulty in obtaining approval for craniofacial or congenital > defects. Replies have already been received from virtually every > state, and a preliminary review indicates that most of those > responding have encountered this problem in some form. > > To address this situation, ASPRS is exploring a nationwide effort to > focus attention on the insurance problems of children with > craniofacial and congenital defects. > > "This issue emphasizes what has always been a long-term effort of > plastic surgeons -- to help children," says ASPRS President Dennis > Lynch, MD. "Our work in this area internationally has been > exceptional. We can do no less at home." > > Case is all too typical > The case of Mike Hatfield is an extraordinary example of the change in > attitude toward reimbursement for craniofacial reconstruction. Born in > December 1978, Mike appeared to have a normal face at first, but soon > his head began growing rapidly. Laurie and Jim were told their son had > hydrocephalus and would be better off in an institution. Instead, the > Hatfields did their own research, which led them to Dr. Salyer. > > The result was a diagnosis of hypertelorism, a midline facial cleft > that left the child with no bone in his nose or cheekbones and no eye > sockets. Over the next few years, Dr. Salyer performed several > surgeries to reconstruct Mike's face as the child grew, all of them > reimbursed with no question by insurance. But while these preliminary > surgeries improved Mike's appearance, the surgery to give him a normal > face could not take place until he had completed his growth. > > Meanwhile, the Hatfields bolstered their son's self image to help him > get through those years when other children saw him as "different." > But kids can be cruel. At one point, another child asked Mike if his > parents were aliens from another planet. > > Last summer Mike, who is now 6'4" and a member of the National Honor > Society, graduated from high school. The time had come for Dr. Salyer > to complete work on Mike's face with several reconstructive tasks, all > to be performed in one surgery. Sharing in the procedure was a > neurosurgeon who opened the skull and removed excess bone from the > inside. Dr. Salyer used this bone material to shape an adult face with > cheekbones and eye sockets for Mike. Several days later as the > bandages came off, Laurie stared in amazement at her son. > > "I couldn't take my eyes off him," she says. "I nearly cried." > > "Mike's surgery erased his deformity so that his face looks normal," > says Dr. Salyer. > > Following the elation came the harsh reality. The self-insured plan > that covers the Hatfields paid for only a small portion of the > surgery, basically the reconstruction of the nose. At question were > thousands of dollars for what the insurance carrier termed "cosmetic," > reconstruction of the cheekbones and eyesockets. The Hatfields were > told that this portion of the surgery was not medically necessary. > > In response to questions from the Hatfields, the insurance plan has > asked the hospital to determine exactly how much of each expense was > related to the nose and how much to the cheekbones and eye sockets -- > an enormous accounting task. According to Jim, the plan has asked for > a division of expenses for the one night Mike spent in ICU, separating > the amount of expense for the nose from that of the cheekbones and eye > sockets. > > "All we're asking," says Laurie, "is that they pay the full 70 percent > that the plan normally would pay for reconstructive surgery." > > An official of the self-insured plan indicated that coverage was not > provided for surgery on the cheekbones and eye sockets because they do > not improve function. However, the issue was on the agenda for the > upcoming Employee Benefits Committee. > > "Obtaining reimbursement for craniofacial surgery is getting more > difficult," says Operation Smile co-founder William Magee, MD, of > Norfolk, Va. "The paperwork is incredibly burdensome, requiring that > surgeons keep track of an infinite number of details. Even when we get > reimbursement, we have to constantly badger the carrier. The amount of > bureaucracy that goes into treating these patients is extensive." > > "This issue did not exist five years ago. The incidence has really > grown, particularly in the past three years," says John Persing, MD, > president of the American Association of Pediatric Plastic surgeons > and chief of plastic surgery at Yale. > > Forming a coalition of physicians > During the recent ASPRS Annual Scientific Meeting, representatives > from a number of medical societies met to discuss this issue and the > growing problem of denials of claims for facial deformities and > congenital defects. Among the organizations included in the discussion > with ASPRS were the American Academy of Pediatrics, American Society > of Maxillofacial Surgeons, American Society of Craniofacial Surgeons > and American Cleft Palate Craniofacial Association. The organizations > agreed to organize a childrens' deformities/ congenital defects > coalition that will include medical, patient and consumer groups. The > coalition's efforts will focus on public education and legislative > initiatives at the state and federal levels. > > "No child should have to grow up with facial disfigurement," says > William Crawley, MD, an ASPRS board member and current president of > the American Society of Maxillofacial Surgeons. > > "Working together in this coalition of physicians, our influence will > be much stronger," says Dr. Crawley. "It's a matter of doing the right > thing." > > In addition, ASPRS has developed a resolution on the issue to be > submitted to the House of Delegates of the American Medical > Association in their upcoming meeting in December. At present, ASPRS > is asking other medical societies to join in sponsorship of this > resolution. > > "We must let people know that this issue is not the concern of a > single specialty, that it has the support of all the specialties that > deal with craniofacial defects," says Dr. Persing. > > A grassroots effort > "This situation affects all of us as plastic surgeons," says Dr. > Lynch, "and it will take a grassroots effort by all of our membership > to bring this to the attention of the public." > > While a Congressional approach is being considered, the initiatives in > state legislatures are equally important, Dr. Lynch explains. > Preliminary research shows that several states have already enacted > legislation requiring coverage of craniofacial and congenital defects. > The coalition will encourage and assist state and regional > organizations in pursuing this type of legislation in other states. In > the process, plastic surgeons will be called upon to testify before > legislative committees. Dr. Lynch is urging all ASPRS members to take > an active role in educating the public on the local level and > initiating legislation at the state level. > > "It is a travesty for any child to have to live with a facial > deformity that could be corrected. The fact that these cases are not > considered to be 'reconstructive' is bizarre," says Dr. Magee. "As > plastic surgeons, we must be advocates for these children who need our > help." > > Reprinted from Plastic Surgery News, an ASPRS member publication.

--0-1060077575-884637578=:18641-- ========================================================================= Date: Mon, 12 Jan 1998 20:47:42 -0800 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Robin MacDonald <macdonal@GOLDEN.NET> Subject: walking MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

Our daughter didn't start walking till 3. A friend of ours made a walker for her, a device she could use to support herself while she was learning to walk. This gave her lots of self confidence during her attempts.

For that matter, she didn't start talking until many children start, and now she is talking and walking a storm.

It is somewhat frustrating or at least troubling to see delays in such a thing as walking...but like everything else, when they are ready they're ready.

Perhaps check out a medical supply store Re: a walker...the only thing I can think of is that most walkers are made for the elderly..and hence may be a little high.

good luck...from walking and talking in Waterloo. ========================================================================= Date: Mon, 12 Jan 1998 21:20:36 -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: "Wendy S. Pak" <Wendy_S._Pak@RIDLEY.ON.CA> Subject: Fwd: Re: Wendy--adults connecting MIME-Version: 1.0 Content-type: text/plain; charset=iso-8859-1 Content-Transfer-Encoding: 8bit

Lark & Joanne et al,

Thanks for the info. My sister is not as well written as others with Aperts. She still acts like a teenager and hasn't quite made the jump to adulthood in certain aspects. Most of it is probably because she was brought up thinking she couldn't do much. However, she is quite capable of doing a lot of things. It is too bad we didn't realize sooner of her potential. It is great to hear that families now are giving thier kids support at such an early age and treating them no differently. That is great for their self-esteem.

Anyway, I know she would love to get involved. She is a real social butterfly - too much sometimes that she gets needy or clingy. We will look to travel whereever there is a gathering.

Wendy ========================================================================= Date: Mon, 12 Jan 1998 18:45:13 -0800 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Lark Jarvis <lark@INVOLVED.COM> Subject: Re: Grant sources, etc? In-Reply-To: <19980110.211954.10118.1.chanan8@juno.com> Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

Hi Joanne, I'm iced in, so I'm catching up on email (it was fun at first that everything's cancelled--now it's getting kinda boring! :) At 09:19 PM 1/10/98 +0000, you wrote: > >New job?? Whacha up to? Pardon me if you have talked about this before, >my memory lacks. Nope, memory doesn't lack--I hadn't mentioned it much up til now, because I hadn't really known whether I was anything but a short-timer! (I've counted my chickens too soon a couple of times before . . . ) It's for a VERY small non-profit that distributes/produces alternative medical software to practitioners of all kinds. Our site is at http://www.Integrative-Medicine.com if you're interested. I'm doing lots of office work, a little customer service, and hopefully more and more research. . They're people with a "purpose," and a really unique project so that's important to me, no matter what the pay (sounds like your jobs are, too--BUT sometimes I wish I didn't care about "meaning" and all, and just hired on at some giant company with stock options, etc . . . ;) RIght now, I just have my fingers crossed that it's stable!

I really sympathize about your job situation, though--no need to apologize--there really is some luck involved--I had *two* jobs before this one where the clinic either went under or drastically reorganized and layed me off--big disappointments! A career just doesn't pop outta thin air--maybe a generation ago, yes, but now it's not so simple . . . . things are too unstable . . .

There is a small non-profit here in Portland that specializes in start-up's for other non-profits, and they offer really cheap workshops on grantwriting several times a year--you might call your local United Way and see if there's something like that where you are. It's not too hard to find reasonably affordable training. I gotta tell ya, though, grant-writing looks SOOOO tedious! A friend of mine took a workshop, and said that her eyes glazed over after about an hour or so . . It's a great skill to have, though . . . wish I could do it!

From what I've heard, besides dotting every i and filling out the forms perfectly, one of the big things about writing successful grants is proving that noone else has gotten money for what you're trying to do, and that there really is a unique need. That's why I think it shouldn't be too hard to get money for an adults' event--it hasn't been done before! There is a really neat woman who used to be on the Crouzons' list who has some experience at successful grant writing-she's not online right now, but Penny or I can dig up her address/phone if you'd like to talk to her--She's in her late 60's, and is very cool and progressive about adult issues! Gotta go--hope things start looking up for you soon--I know all too well about that career-frustration thing! Lark ========================================================================= Date: Mon, 12 Jan 1998 22:37:33 -0600 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Chad & Denise Graham <cgraham@INFOAVE.NET> Subject: pictures/walking MIME-version: 1.0 Content-type: text/plain; charset="us-ascii"

Rachel, Thanks for the pictures! Now I can put a face with the name? Your baby pictures is precious, but you need that back. It seems like it is a family picture that you wouldn't want to let go. I will gladly send it back, I would feel bad taking something so dear.

Carol, Daryl started walking at 20 months. I was starting to worry about him too. Does Ashleigh get any physical therapy. That really seemed to help Daryl. I think what had the biggest impact was taking him to nursery at church and the child development center 4 times a week for 2 1/2 hours a day. He got frustrated at watching the other kids getting around faster than him. It seemed to give them the fire to want to try. I am not sure if this helps, but I just thought I would write. Good luck!!

Denise Graham ========================================================================= Date: Tue, 13 Jan 1998 01:00:53 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: foster <foster@ICONTECH.COM> Subject: Introduction to list Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

Hi we are the Fosters from Scranton,Pa. My name is Karen and my husbands name is Bill. We have six daughters and one son .Our son Billy is nine months old and has Aperts. He was born four weeks early and has had two heart surgeries and one bowel surgery,which were all preformed at Hershey Medical Center during the first two months of his life.Billy has a Micky button for feeding but is doing a great deal of feeding by mouth, but still uses the button for formula. He came home for the first time when he was three months old and was on monitors and oxygen twentyfour hours a day. He also had to be suctioned three times a day or he could not breathe.He now has no monitors, no oxygen, and only needs to be suctioned when he has a cold.He is a wonderful guy and we are blessed to have him in our lives. The only difference between Billy and his sisters is he lookes different and he is more spoiled. We are very grateful to have somewhere to go to get information from people who know firsthand what can and can't happen. Billy is going to have his first cranial surgery on Feb.3rd at Hershey and we are looking for anyone who may have had or knows of anyone who has had any surgeries done at the Hershey Medical Center in Pa. We are looking also for anything that you guys may want to tell us about this surgery. It is a Bi-Lateral orbital cranial facial advancement. We welcome any and all input. I can tell by some of the things I have read on this list that you people care about what others are going through even we you are going through your one trials and we would like to help others also. Thanks Karen ========================================================================= Date: Mon, 13 Jan 1997 06:51:56 -0800 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Longshot & Darwin <Longshot.Darwin@MCI2000.COM> Subject: Re: pictures/walking In-Reply-To: <v01550100b0e09eb66d4a@[204.116.102.105]> MIME-version: 1.0 Content-type: text/plain; X-MAPIextension=.TXT; charset=US-ASCII Content-transfer-encoding: 7bit

Denise,

I thank you for the thought, but we have more baby pictures and I do have another copy of that one. So you are welcome to keep it if you would like. Or if you want to send it back that's fine too :)

Take care,

Rachel ========================================================================= Date: Tue, 13 Jan 1998 08:52:05 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jenngram <Jenngram@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Re: pictures Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Joanne,

Yhanks for the picture. You are truley a beautiful woman..Again..future hope for Jordan once again!!! Hope the job search is going good..not many thngs could be as stressful. I am not jealous thats for sure. I turn into a bear (and thats a nice way to put it..just ask my husband) when I am on the hunt!! Time and patience!!

Jenn ========================================================================= Date: Tue, 13 Jan 1998 08:58:44 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jenngram <Jenngram@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Re: Introduction to list Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Welcome Karen. You and I are fixing to travel down the same road..On Feb. 10 my little boy (4 mos.) is having his Bi-frontal orbital advancement!! So ya'll will be a few days ahead of us. Glad to hear Billy is doing well..from what everyone here has told me..after the surgery they do even better!! Something to look forward to after months of dreaded anticipation!! As we haven't had the surgery yest I can't provide many details..but I am sure the others will fill you in..What I can tell you is that I am not as nervous as I was..the support and encouragement have been great. I don't know what i would have done without it. Ya'll will be fine!! You are a strong and brave lady!! You have to be if you have 7 kids!! I am already amazed by you..I can bearly handle 1!!

Best of luck and keep us posted!!!

Jenn Graham (St. Petersburg, FL) ========================================================================= Date: Tue, 13 Jan 1998 09:52:25 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jim and Kelly Younkin <JimandKelly@YOUNKIN.COM> Subject: Re: Introduction to list MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit

Welcome to the Foster family! We are the Younkins, our oldest is a boy and then we have 2 girls. Our youngest daughter, Sara, is 21 months old and has Aperts. She is a wonderful little girl! She's had an early forehead release and then had the orbital/forehad advancement. She did very well--better than I handled it! It's amazing to watch how they look different every morning as the swelling goes down! I used to live in Scranton (and Dunmore actually!) I worked at Friendhip House Children's Center when I first got out of college. Where do you live? Best of luck, and take care! Kelly, Jim, Jordan, Katie, and Sara ========================================================================= Date: Tue, 13 Jan 1998 10:53:44 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Gaylann1 <Gaylann1@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Introduction to List Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Dittos to Welcome to the Foster Family! My name is Gaylann Hicks the grandmother of Blake 3 1/2 with crouzons. Blake is scheduled for his third cranial vault and forehead advancment January 26th. We live in Memphis and are traveling to Dallas for the surgery. Blake has also had eye surgery and a shunt. We are not looking forward to another surgery but know it has to be done due to pressure on the optic nerve. My daughter and son-in-law have done alot of research and found we need a cranial facial team. He will have his surgery at Columbia Medical City Dallas by Drs. Fearon and Derek. We don't have material on your area but there are teams all over the US. Hope there is a team near you. I know you will do great with your new little one. You have a lot of experience! I have two children (married now) and 4 grandchildren and I am so blessed. This support group is also a blessing.

Take Care, Gaylann ========================================================================= Date: Tue, 13 Jan 1998 13:02:03 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Yonstein <Yonstein@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Welcome Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Hlelo to the Foster Family from the Krebs Family on Long Island, New York. We have two children, Nicholas, three and a half and Emily 5 months, with Aperts.

Emily had her cranial surgery in October. After five days in PICU she came home and was a real trooper. They do bounce back very quickly. Yes, her head was very swollen, her eyes were swollen shut for two days, but the recovery is amazing.

I am sure you will find this group as much support and help as we have found it to be.

Janine Krebs ========================================================================= Date: Tue, 13 Jan 1998 11:58:29 -0600 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: JMuggli <jmuggli@CVTV.NET> Subject: Intro to list MIME-Version: 1.0 Content-Type: text/plain; charset="us-ascii" Content-Transfer-Encoding: 8bit

Hello, My name is Jennie Muggli. I am the grandmother, better known as Nana, of Sarah Elizabeth who is 9 months old. Sarah spent the month of December at Texas Children's Hospital in Houston. She had a trachea operation and also tubes in her ears. She is breathing so much better now! Since birth Sarah has had a feeding tube down her throat and apnea. She was born with very minute nasal passages so she was unable to eat and breathe at the same time. So this trachea, although a lot of care, is a blessing. She is eating baby food and drinking her bottle for the first time. And she is growing like a weed! Now she will be able to undergo her many surgeries to come. My husband Jack and I have five children between us and eight grandchildren. Two of our granddaughters are special needs children, one with Turner Syndrome and one with Apert's. I am so thankful my son in law Charles(Sarah's Daddy) told me about this group!

Lots of Love from Texas Sarah's Nana Jennie Muggli ========================================================================= Date: Tue, 13 Jan 1998 13:19:11 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Yonstein <Yonstein@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Re: Intro to list Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Dear Sara's Nana:

Hello and welcome. My name is Janine Krebs and my daughter Emily is 5 months old with Aperts. This group has been filled with information and support for us since I found it.

Also, there are a couple of other grandparents on the list you may want to chat with.

Welcome again. Glad to hear Sara is doing well.

Janine ========================================================================= Date: Tue, 13 Jan 1998 13:09:07 -0600 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: JMuggli <jmuggli@CVTV.NET> Subject: FW: Intro to list MIME-Version: 1.0 Content-Type: text/plain; charset="us-ascii" Content-Transfer-Encoding: 8bit

-----Original Message----- From: JMuggli [SMTP:jmuggli@cvtv.net] Sent: Tuesday, January 13, 1998 11:58 AM To: 'APERT' Subject: Intro to list

Hello, My name is Jennie Muggli. I am the grandmother, better known as Nana, of Sarah Elizabeth who is 9 months old. Sarah spent the month of December at Texas Children's Hospital in Houston. She had a trachea operation and also tubes in her ears. She is breathing so much better now! Since birth Sarah has had a feeding tube down her throat and apnea. She was born with very minute nasal passages so she was unable to eat and breathe at the same time. So this trachea, although a lot of care, is a blessing. She is eating baby food and drinking her bottle for the first time. And she is growing like a weed! Now she will be able to undergo her many surgeries to come. My husband Jack and I have five children between us and eight grandchildren. Two of our granddaughters are special needs children, one with Turner Syndrome and one with Apert's. I am so thankful my son in law Charles(Sarah's Daddy) told me about this group!

Lots of Love from Texas Sarah's Nana Jennie Muggli ========================================================================= Date: Tue, 13 Jan 1998 14:46:31 -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: ize <ize@TACOMA.CEATLABS.OKSTATE.EDU> Subject: Walking MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

Hello to all,

Felipe started walking at 14 months. We were concerned about it as well . Once they are ready to do so, no body can stop them. Felipe also had Physical Therapy at that time(once a week) and it seemed to help him. I used to have a big comforter on the living room's floor and let Felipe stay there all day long playing with his twin brother, unless he was sleeping. Otherwise he was there and seemed to love been there, and felt free to roll over and over... Now he is recovering from his last surgery. He had his tonsils removed. Poor baby, he is two years old and alredy had ten surgeries! He never had a problem with any of the surgeries that he had, he always did great with the anesthesy and recovering as well. But as a parent we have the right to be concerned every time that our child goes for surgery. We are looking forward for no more surgeries. Now we are just expecting the next surgery to be when he is a teenager as the craniofacial time and the plastic surgeon said. I hope that God is listen to me now ...

Best wishes to all, The Ize Family. ========================================================================= Date: Tue, 13 Jan 1998 17:25:13 -0600 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: cal <cal@PHOENIX.NET> Organization: asc Subject: Re: FW: Intro to list MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

JMuggli wrote: > > -----Original Message----- > From: JMuggli [SMTP:jmuggli@cvtv.net] > Sent: Tuesday, January 13, 1998 11:58 AM > To: 'APERT' > Subject: Intro to list > > Hello, > > My husband Jack and I have five children between us and eight grandchildren. Two of our granddaughters are special needs children, one with Turner Syndrome and one with Apert's. I am so thankful my son in law Charles(Sarah's Daddy) told me about this group! > > Lots of Love from Texas > Sarah's Nana > Jennie Muggli Hi mom welcome to the list get ready for a lot of mail and info call you soon love charles ========================================================================= Date: Tue, 13 Jan 1998 19:09:46 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: MHTeach102 <MHTeach102@AOL.COM> Organization: AOL (http://www.aol.com) Subject: An Update Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

a word from thr ranch,

Wanted everyone to know that we are still hanging in down here. BJ has shown a few signs of improvement this week. The doctors seem to have his pain under control, and for the first time in a long time his liver function tests came back within normal limits. He is breathing much better and has even spent a little less time on the ventalator.

I wish I could say mom and dad were doing as good. This has been a very tough few weeks and either the stress or lack of sleep are starting to eat away at us. we seem to be arguing over the smallest details, and both seem to be working as much as we possibly can just to keep things above water. David is away for a few days. He went to Dallas to meet with a specialist at a hospital there, as well as talk to some lawyers about the mineral rights to the land.

We are trying to find a way to increase BJ's nursing care, pay the hospital bills and still keep the ranch afloat. It is hard to beleive but BJ will be 11 on Friday. It just doesn't seem possible. It seems like just a few days ago he was a baby. I don't know who grew more in these past 11 years him, or us.

Well I better go got to feed the other kids and then see if I can get some work done, before the nurse leaves for the night.

Marjorie Harmon ========================================================================= Date: Tue, 13 Jan 1998 19:19:01 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: MHTeach102 <MHTeach102@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Re: Intro to list Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Hi Jennie,

My name is Marjorie Harmon, my David and I are the proud parents of a 10 year old with Aperts. His name is BJ (actually Benjamin but he likes BJ better). You have discovered the most caring and concerned group of individuals that I have ever been blessed enough to find. These great individuals, will share your joys, fears, and concerns. They will help you smile at the succeses and answere questions about your concerns and doubts. They will listen as you smile, laugh and even cry. They don't even mind if you ramble (trust me I've done it enough to know) So like I said before this is truely a remarkable group of people.

Marjorie Harmon San Antonio Texas ========================================================================= Date: Tue, 13 Jan 1998 19:58:25 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Mark Smith <dsprado@PENN.COM> Subject: Re: Introduction to list MIME-Version: 1.0 Content-Type: text/plain; charset="iso-8859-1" Content-Transfer-Encoding: 7bit

-----Original Message----- From: foster <foster@ICONTECH.COM> To: APERT@LISTSERV.AOL.COM <APERT@LISTSERV.AOL.COM> Date: Tuesday, January 13, 1998 1:00 AM Subject: Introduction to list

> Hi we are the Fosters from Scranton,Pa. My name is Karen and my husbands >name is Bill.

Hi, we are the Smiths from Warren, Pa. My name is Mark and my wives name is Michele. We live in the Northwest corner of Pa. Sorry, we have not had any experience with the Hershey Medical Center. It is so nice to see that more and more people from our state have been joining our wonderful family here!! I know that there are some people on the listserver that are from central PA and I am definitely sure that they will be getting with you very soon!!!:o) Glad to have you with us.

Our LiL' Bit (Kayla) is 6 years old and has Aperts. Daddy's pride and joy. She is sure a handful at times.

To all the rest of our family....we have finally gotten a scanner and can now send pictures. Although I am still trying my best to understand all of it. When I finally get it all down pat (like don't scan 8 x 10s)(takes forever) there will be some sent to those of our family who would like one. Also will be sending some into Teeters and get that done. Just have to find the time. Work just keeps taken all our spare time. Love to all Mark and Michele ========================================================================= Date: Tue, 13 Jan 1998 20:03:13 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jenngram <Jenngram@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Re: An Update Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Marjorie,

As hard as it is..when you have someone to help w/ the kids..you HAVE to rest!! Its so important..you haev to take care of yourself so you can take care of BJ and the rest of your family. I know its easier said than done..but when you have the opportunity to do so..take it..even if its just for an hour or so. Sleep depravation can do crazy things to our minds..even crazier to those around us!!!

I am so glad to hear BJ is doing better..perhaps if pain can be controlled maybe the body will better be able to fix itself.

Hope things continue to swing ya'lls way..Try and get some much needed rest so you don't wind up sick as a dog..and tell BJ happy # 11!!!

Our prayers and good wishes continue to be with you...thanx for taking the time to update us.

Jenn ========================================================================= Date: Tue, 13 Jan 1998 20:27:29 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: DnJJenner <DnJJenner@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Re: Update, and a question for you all Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Don, wow that sounds great. we have been wanting one for a while, but haven't come across anything that we really liked, that wasn't ALOT of money. I will talk to John about looking into them again so we can get one, I'll let you know as soon as we get one.

Dawn ========================================================================= Date: Tue, 13 Jan 1998 18:10:27 -0800 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Scott Pengelly <scottp@LLX.COM> Subject: Re: An Update In-Reply-To: <2f147150.34bc026d@aol.com> Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

Hello Marjorie, David, BJ, et al.

Thanks for the update and glad to hear the good news about keeping afloat with less pain for BJ.

All the best and love, Scott

At 07:09 PM 1/13/98 EST, MHTeach102 wrote: >a word from thr ranch, > >Wanted everyone to know that we are still hanging in down here. BJ has shown >a few signs of improvement this week. The doctors seem to have his pain under >control, and for the first time in a long time his liver function tests came >back within normal limits. He is breathing much better and has even spent a >little less time on the ventalator. > >I wish I could say mom and dad were doing as good. This has been a very tough >few weeks and either the stress or lack of sleep are starting to eat away at >us. we seem to be arguing over the smallest details, and both seem to be >working as much as we possibly can just to keep things above water. David is >away for a few days. He went to Dallas to meet with a specialist at a hospital >there, as well as talk to some lawyers about the mineral rights to the land. > >We are trying to find a way to increase BJ's nursing care, pay the hospital >bills and still keep the ranch afloat. It is hard to beleive but BJ will be >11 on Friday. It just doesn't seem possible. It seems like just a few days >ago he was a baby. I don't know who grew more in these past 11 years him, or >us. > >Well I better go got to feed the other kids and then see if I can get some >work done, before the nurse leaves for the night. > >Marjorie Harmon > > ========================================================================= Date: Tue, 13 Jan 1998 23:06:56 +0000 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "J. G. Lindamood" <chanan8@JUNO.COM> Subject: We are Family!

Hello Family!

My, how we have grown!

Gee whiz! I have been working some crazy hours and haven't had time to really read and appreciate my e-mail. I have been sitting here for 2 HOURS catching up with everyone! The reading ability really slows down when you have tears pouring down your cheeks! Heaven help me, I don't know where to begin!

Marjorie, I want to echo Jenn Grahams words - REST! We love you and love to hear from you, so take care of yourself! How do you feel about sharing your address with us so we can send a card to BJ? For those of us on the other side of the nation from you, it might not get there Friday, but I would still like to send one. I will keep you, David and the rest of your flock in my prayers. I'm not married, so I can't give advice on how to reduce the tension between the two of you. I will pray though.

Jenn, thanks for the compliment. Made my day! Especially knowing the picture I sent :-)! Hope all is calm in your world. It sounds like February will be a busy month for "our kids" who are going through surgeries. My knees are going to get a work out!

Lark, Sorry to hear you are being affected by the ice. Hope you haven't experienced any danger. Thanks for the continued information on grant writing. I would like to speak with lady you mentioned with experience in grant writing. I love to network and get as much info as I can. The more I thought about it, I realized that there are grant writing training with my local United Way. I have seen the info cross my desk! Humph!

How many grandparents do we have now? I will never be able to express what I feel every time I read a message from a member of the "extended family"! Coming from a family who didn't have much tact or genuine love, my grandfather continuously asked my mother,"can't they fix her?" in front of me, and I was old enough to understand :-( I am deeply moved to know you are supporting your children and grandchildren! NEAT!

Joanne, in Ohio ========================================================================= Date: Tue, 13 Jan 1998 23:28:52 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jim and Kelly Younkin <JimandKelly@YOUNKIN.COM> Subject: BJ's birthday MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit

Hi Marjorie and family! I don't know how you'd feel about sending your mailing address to us, but our oldest child (Jordan) would really like to send BJ a birthday card. Jord's only 8, but every few days he'll say "Hey Mom have you heard anything about BJ lately?" So when I told him that BJ's birthday was coming up he wanted to send him a card. Won't get there by Friday from PA but we figured BJ might like to see the cards keep coming in. Let us know! PLEASE PLEASE try to get some rest! I know it's hard. (It's been hard for us at times and Lord knows we've never been through anything like what you guys have been dealing with lately!) And try to spend some time alone with David even if it's only sharing a bowl of popcorn late at night when you both have a spare minute. Just agree that for as long as that bowl lasts you're not going to talk about anything stressful and concentrate just on feeling good about the two of you. Listen to me--dishing out advice right and left!! I think maybe now I should quit playing Dear Abby and take some of my own advice and get to sleep! It's late here in PA and morning seems to come earlier and earlier around here! :) Take care everyone! Kelly Younkin and family ========================================================================= Date: Wed, 14 Jan 1998 07:52:43 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Mark Smith <dsprado@PENN.COM> Subject: Re: Pa MIME-Version: 1.0 Content-Type: multipart/alternative; boundary="----=_NextPart_000_001A_01BD20C1.65509A00"

This is a multi-part message in MIME format.

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Dear Jones,

We are the Smith's, Mark and Michele. We have a 10 year daughter who = name is Megan, and Kayla who is 6 and has aperts. We are also from Pa. = We live in Warren, Pa. which is in the Northwest corner of the state. I = am wondering if CHOP stands for Children's Hospital of Pittsburgh? We = go there all the time. Kayla just had an Cranial head surgery last = June. That was her second one. The first was done when she was 5 mos = old. Beside having eye surgery that is the only surgery that Pitts. has = done those two. We only have been going there for a year now. I think = the doctor and staff are pretty nice and friendly. Look forward to = talking to you again.

Michele and Mark.

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

<META content=3Dtext/html;charset=3Diso-8859-1 = http-equiv=3DContent-Type> <META content=3D'"MSHTML 4.72.2106.6"' name=3DGENERATOR> </HEAD> <BODY bgColor=3D#ffffff> <DIV><FONT color=3D#000000 size=3D2>Dear Jones,</FONT></DIV> <DIV><FONT color=3D#000000 size=3D2></FONT>&nbsp;</DIV> <DIV><FONT color=3D#000000 size=3D2>We are the Smith's, Mark and = Michele.&nbsp; We=20 have a 10 year daughter who name is Megan, and Kayla who is 6 and has=20 aperts.&nbsp; We are also from Pa.&nbsp; We live in Warren, Pa. which is = in the=20 Northwest corner of the state.&nbsp; I am wondering if CHOP stands for=20 Children's Hospital of Pittsburgh?&nbsp;&nbsp; We go there all the = time.&nbsp;=20 Kayla just had an Cranial head surgery last June.&nbsp; That was her = second=20 one.&nbsp; The first was done when she was 5 mos old.&nbsp; Beside = having eye=20 surgery that is the only surgery that Pitts. has done those two.&nbsp; = We only=20 have been going there for a year now.&nbsp; I think the doctor and staff = are=20 pretty nice and friendly.&nbsp; Look forward to talking to&nbsp; you=20 again.</FONT></DIV> <DIV><FONT color=3D#000000 size=3D2></FONT>&nbsp;</DIV> <DIV><FONT color=3D#000000 size=3D2>Michele and Mark.</FONT></DIV> <DIV><FONT color=3D#000000 size=3D2></FONT>&nbsp;</DIV></BODY></HTML>

------=_NextPart_000_001A_01BD20C1.65509A00-- ========================================================================= Date: Tue, 13 Jan 1998 22:18:21 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Elizabeth de Silva <lizsilva@SRV1.TELCONET.NET> Subject: Hello MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

Hello to everynone and welcome to our new family members!

It has been a long since I do not write (lack of time... as you know I am using my job computer and internet) but I am updating myself with our team news.

First of all let me tell Marjorie that everyone at my family knows and cares about BJ'health (including grammie, cousins and aunts and uncles...everyone). My family is catholic and they are praying for BJ's recovery. Besides, it is so hard to maintain good mood in the family when you are all passing thru a very stressing situation. I feel so sorry we can not give you a hand but we do can give you all our love.

Joanne in Ohio: what happened with the part-time interview? Hope it all went as you expected.

I just read that someone has trouble with Spanish Language. If you don't mind and if it is not too late, you can ask the doctors for written English instructions for your nanny and I can translate them into Spanish. I will be glad to be of help and that is my native language.

Mark: is it still snowing a lot in PA? Here, in Ecuador, we are getting news that this is a very cold winter in the USA.

Due to job problems, I will not be able to get to the USA before February for Albita's hand surgery. So, I hope to meet some of you at PA, if you don't mind, in Feb.

By the way, I was reading the information you shared about hand surgery. Albita had a first surgery in both hands at the same time when she was one year old. The doctor put her casts in both hands, he took them out in a week after surgery, put new casts again, and send us back to our country with instructions to take them out after three weeks. Everything went okay. The surgery took almost six hours (the longest hours of my life). Does your kids had casts on their hands after surgery?

Bye, bye from our hot and extremely rainy country.

Elizabeth ========================================================================= Date: Wed, 14 Jan 1998 18:47:50 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: MHTeach102 <MHTeach102@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Re: BJ's birthday Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

I will give you my address at work, they have been great enough to keep things going while I have been gone.

Marjorie Harmon Special Education Teacher Ronald E. McNair Middle School 11914 Dragon Lane San Antonio Tx 78252

BJ would love to get a birthday card from Jordan. BJ really seemed to get excited over the Christmas cards, we still have them all over the wall in his room.

Some GREAT news today. David was able to secure a loan against the mineral rights to the land, so financially we are ok. I was worried that I was going to have to go back to work and not be able to take care of BJ. more GREAT news BJ was able to sit up today for about 4 hours, he played with his truck and even laughed alot. He was able to eat a little bit today and all in all seemed very happy. I am doing better today too, got several hours of sleep this morning and seemed to have found some reserve strength and faith.

Wishing everyone well from the ranch. (We are planning a small party this weekend, with BJ and the kids, nothing much but still need to celebrate.

Marjorie Harmon ========================================================================= Date: Wed, 14 Jan 1998 19:29:27 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Yonstein <Yonstein@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Re: BJ's birthday Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Dear Marjorie:

Congratulations on the loan!! I'm sure that takes some of the pressure off you and David. It sounds like you had a good day with BJ. Hopefully there are a lot more good days on the way.

Enjoy your weekend and his birthday and try to keep your strength up.

Best Wishes,

Janine Krebs ========================================================================= Date: Wed, 14 Jan 1998 20:01:30 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: GSieb91515 <GSieb91515@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Re: BJ's birthday Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Marjorie,

How wonderful. I am so glad to hear that BJ had a great day, and you too. It's amazing what a few hours of sound sleep will do. Hope BJ has a very Happy Birthday. We will be thinking of you all and sending our love.

The Sieberts Houston ========================================================================= Date: Wed, 14 Jan 1998 20:08:25 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: GSieb91515 <GSieb91515@AOL.COM> Organization: AOL (http://www.aol.com) Subject: Re: Hello Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Elizabeth,

I appreciate so much your offer to translate for me. We have hired a new nanny this week and she is wonderful. She does speak fairly good english so far. She is from El Salvador and has been in America for 3 years now. I am going to purchase a computer software program that allows you to type in english and it will automatically reprint it in Spanish or several other languages. I have a friend who used it and said it helped her with her nanny. We hope Albieta gets to come for her surgery soon. Jonathan had his hands for his first surgery in a soft type cast that he was out of in 2 days. After that they used gauze and wraps which we constantly had to redo because Jonathan kept getting out of them. We are scheduled for our next hand surgery on 2/23. Best of luck coming.

Brenda Siebert ========================================================================= Date: Wed, 14 Jan 1998 19:49:33 -0600 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: JMuggli <jmuggli@CVTV.NET> Subject: Pictures of Jonathon MIME-Version: 1.0 Content-Type: text/plain; charset="us-ascii" Content-Transfer-Encoding: 8bit

Brenda, I hope you remember me. I am Sarah's Nana (Grandmother). Tamara and I met you in the Plastic Surgeon's office. We have some darling pictures of Jonathon. Tamara said she would drop them in the mail to you. I'm glad Jonathon is doing well. Sarah is home from the hospital and doing quite well with the trach! Hope everything works out with your new nanny!

Jennie Muggli Weimar, TX ========================================================================= Date: Wed, 14 Jan 1998 22:01:54 +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>

Happy Birthday BJ! We will be thinking of you on Friday!

Joanne, and her flock, Clarence and Coal, here in Ohio