========================================================================= Date: Tue, 7 Apr 1998 22:33:04 -0600 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Sherrie <sdwarner@ROF.NET> Subject: Re: Speech therapy age Mime-version: 1.0 Content-type: text/plain; charset="us-ascii" Content-transfer-encoding: 7bit

>> I was also wondering when is a good time to start speech therapy? > >Me too - I am curious when some of you started speech therapy. Brenna >talks a lot, but her words are very hard to distinguish sometimes. We

To all who asked (I am on the digest and forget who all wrote under this topic),

I am an early intervention speech/language therapist and I have seen children as young as a couple of months old...mostly those who need more stimulation due to either hearing or processing problems or due to their environment and those with oral motor/feeding issues. Other times I start about the time they should be babbling more...and more often I start seeing infants around a year old if they are at risk for speech/language delays or are not saying any words at all. Still other times, I don't see children until after 2 because there are not referred by some physicians until at least 2, if not older. I only see children once a week generally because that is all my agency usually allows for (and plus the fact that I do home visits in a large area, with sometimes long distances in between) it would be difficult )....however, the boy with Aperts that I see sees me twice a week and has since he was about 18 months (I have seen him since he was 8 months old). I see most of the children for 45 minutes to an hour and there is no charge to the families. I do teach sign language to some of the children on my caseload as it enhances their communication and provides a means of communication for some children who are not talking yet and are getting frustrated. My general experience after over 10 years of approaching things this way is that once a child starts talking more and more clearly they naturally fade the signs out. Plus it is a great "second language" to know and be able to use! I have developmentally disabled adults that I see for therapy as well, who still resort to signs that they learned long ago when they cannot get something across verbally and others who use the signs they learned to communicate with others who do sign. I appreciate and have saved all of the comments about signing and once I find a couple of papers that I have using sign language with young children I will share some thoughts from them with you all.

Well...it is late and I feel like this was somewhat disjointed, but I hope it made sense and gave you some insight from a professional perspective. Let me add though that I also say this from a parent perspective as I have a foster/adoptive child with special needs.

Best to all of you, Sherrie ========================================================================= Date: Wed, 8 Apr 1998 10:54:41 -0400 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Colleen Jones <coljones@PTDPROLOG.NET> Subject: drooling and feeding MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit

Jacob is a constant drooler. We use bibs on him but they get soaked too. He is 21 months old and only has one very large tooth on the bottom. I can see more coming but he seems to take forever to get them in. He also keeps his tongue out almost constantly, is this common with Apert's? Hopefully the drooling and constant nose running will improve when more teeth come in. Another problem we have with Jacob is feeding. He still eats mostly all baby food or very finely chopped table food. He seems to gag on anything that has any chunk to it at all, even stage 3 baby veggies. This is a real stumbling block for us. Has anyone else experienced this problem? Any thoughts or suggestions would be appreciated. Oh yeah, he still has not had the cleft palate repair yet because of illnesses when surgery is scheduled. ========================================================================= Date: Wed, 8 Apr 1998 12:14:51 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: WCMurph <WCMurph@AOL.COM> Subject: Hand Surgeons Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

To all,

My son, Sammy has finally started being seen by all the specialists he needs--he just had his first CT scan and he's now 3 months old. This Friday (Apr 10), a doctor from Texas will see him as he is presented before an orthopedic conference at Bethesda Naval Hospital. Has anyone ever heard of or worked with a Dr. Isaki from Texas (not sure on the spelling)?

We're curious about her background, because they say she is a world-reknown hand surgeon and we've never heard of her.

Thanks,

Bill Murphey wcmurph@aol.com ========================================================================= Date: Wed, 8 Apr 1998 16:51:48 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Yonstein <Yonstein@AOL.COM> Subject: speech, etc. Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Hello to all,

I was away last weekend and had a bunch of mail to catch up on.

Well, it sounds like you got your questions answered with respect to sleep problems and whether or not it's a good idea to have them sleep with you. I for one happen to think that it's a very personal thing. We have tried both ways with my son (Now 3 and a half). We let him cry, we rocked him until he fell asleep, etc. Now he's a great sleeper, but it took time. Emily, thank goodness, has always been a good sleeper.

To Joanne, good luck on Saturday. Glad to hear things are looking up.

I do have a question with relation to the sign language. Forgive me for sounding naive, but does the fact that our kids are missing digits interfere with using sign language at all? It sounds like a great idea for them to learn it. I also was wondering when would be a good time to start speech therapy. Emily is scheduled for her palate repair May 22nd and I was told it would start after that. She seems to be making all appropriate sounds.

Brenda, hope Jonathan is recovering nicely in this 2 week period after surgery.

Hope everyone else is doing well.

Best wishes,

Janine Krebs ========================================================================= Date: Wed, 8 Apr 1998 17:04:48 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Irs Nav <IrsNav@AOL.COM> Subject: Re: At the risk of... Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Just wanted to let you know that our 22 month old Jonathan also wakes at least twice a night. Jeff and I always give him a bit of time to see if he will go back down and if not go to him. When he was 15 months old, I had had enough of rocking every time he woke up so we got a full size mattress with some objects under the head of the bed to elevate it. We think the reason he is waking is that he cannot breath properly and wakes himself up. At any rate, this way I can go to him give him a bottle and reposition him in a good breathing position. We tried having him in our bed with us (as we did with our daughter until she was 2), but it is difficult to sleep with his snoring and restlessness. I firmly believe that you as a parent know what is best for your little one. You see her and know her cries and body language. Sounds like you are doing a fine job!

Best Wishes-Ann Gentz ========================================================================= Date: Wed, 8 Apr 1998 20:46:37 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: GSieb91515 <GSieb91515@AOL.COM> Subject: Re: At the risk of... Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Robyn,

We have used Versed for the last 2 surgeries which makes Jonathan drowsy enough to not know what's going on. We also brought bottles from home, mostly because they didn't have the platex ortho type. We have never been in the room when Jonathan wakes up from surgery but immediately thereafter in ICU or recovery. Maybe that's where we need to demand our presence. I'm not sure if it's nightmares Jonathan is having but it sure seems that way. Once he wakes up he doesn't want to go back to bed and it's usually an hour long deal rocking and walking. Needless to say I'm not very sharp for work the next day. Hopefully, this will ease up soon. Thanks for the info.

Brenda ========================================================================= Date: Wed, 8 Apr 1998 20:57:55 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: GSieb91515 <GSieb91515@AOL.COM> Subject: Re: Hand Surgeons Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Bill,

We live in Houston and have not heard of the doctor you mentioned. We use Dr. Shenaq who is the Chief of Plastic Surgery at Baylor in the Houston Medical Center. We think he is great. His nail beds look really good and he is able to get all 5 fingers. So far we have had 2 hand surgeries and they all look very straight for the time being and the grafts are healing nicely too. He takes a full skin flap from the groin for the grafts. We are very pleased with Dr. Shenaq. Prior to him, we saw a Dr. Brandt at the University of Texas Health Science Center (Hermann). I know there are several on the listserver that have been spoken of in high regards (i.e., Dr. Upton and Dr. Benz). I think it is very important that doctor have a lot of experience with apert children in particular. Where does this doctor practice in Texas?

Brenda Houston GSieb91515@aol.com ========================================================================= Date: Wed, 8 Apr 1998 21:03:00 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: GSieb91515 <GSieb91515@AOL.COM> Subject: ECI Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Someone mentioned in an earlier post that they did not know how to contact the Early Intervention folks in their area. I just received our ECI newsletter and they list the following number for Texas and other states as (800) 250-2246. Hope this helps.

Brenda Houston ========================================================================= Date: Wed, 8 Apr 1998 22:52:51 +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>

Hello Family!

(three days and counting!)

I have the same question Janine had about sign language. Are you talking about the traditional language, or movements that convey what they want?

I asked my mom about the sleeping issue and she reminded me that I didn't "come home" right away. I went to Columbus to have my cranial surgery one week after I was born. Then for the next two years, I had five surgeries to develop my hands. My point is I was used to being in the nursery at a hospital where the nurses didn't have time for holding babies. I was used to sleeping, eating and sleeping on a regular schedule before I ever went home permanently. Mom said of the three kids, I was the best to sleep.

About drooling, I forgot to ask her, but I did remember drooling a lot, and my teeth are sorta in a V shape as opposed to the U because my tongue rests on the back of my front teeth and pushes them out. Braces didn't stop the "natural" gravity of my tongue.

Hope all is well. will let you know asap how Saturday goes. I'm getting nervous! However, I keep telling myself I'm going for the service and not the people (person).

Joanne, cool, but the sun is out, in Ohio!

_____________________________________________________________________ You don't need to buy Internet access to use free Internet e-mail. Get completely free e-mail from Juno at http://www.juno.com Or call Juno at (800) 654-JUNO [654-5866] ========================================================================= Date: Wed, 8 Apr 1998 21:22:35 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jack Muggli <jmuggli@CVTV.NET> Subject: Hand Surgery MIME-Version: 1.0 Content-Type: text/plain; charset="us-ascii" Content-Transfer-Encoding: 8bit

Brenda, So happy to hear Jonathan is doing well after his surgery. He has been in our prayers. Our little Sarah is in Texas Children's with pneumonia. She has had this twice since the first of the year. She was in the hospital for her first birthday April 4th. The nurses made her a poster for her crib and brought her a cake!! We celebrated with balloons and she had a great time! She is scheduled for her first hand surgery April 20th . Dr. Shenaq will be doing the surgery. (If she gets well ) They have had to cancel so many procedures because of her lungs not being clear. I'm thrilled to hear Jonathan's hand surgeries have turn out so well. Glad your back home Jennie Muggli Sarah's Nana ========================================================================= Date: Wed, 8 Apr 1998 23:42:18 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Thornq <Thornq@AOL.COM> Subject: Searching..... Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Most of you will just delete this message because I am looking for someone specific.

I am looking for a response from a woman in Ohio. I know she has a computer and was hoping she was attached to this listserv. Her name is Joanne Slocumb (sp.) and I have lost the piece of paper with her number on it. I know she is coming to Mass. to have Dr. Upton do her daughters hands, and I want to get together with her. So if she is reading this message please e-mail me back.

Lynn Thornquist (Holliston, MA) Thornq@aol.com ========================================================================= Date: Wed, 8 Apr 1998 23:53:26 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: DnJJenner <DnJJenner@AOL.COM> Subject: Re: At the risk of... Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

In a message dated 98-04-08 17:05:00 EDT, you write:

<< When he was 15 months old, I had had enough of rocking every time he woke up so we got a full size mattress with some objects under the head of the bed to elevate it. We think the reason he is waking is that he cannot breath properly and wakes himself up.

Hi I'm sorry if I keep saying this over and over again, but we just Love them! We use Breath Right strips.. the small ones... it is easier we found if they are sleeping first when you put them on, and clean thier nose with a little alcohol first so it will stick, atleast we do because Courtney sweats alot sometimes... but they really do work, Courtney sleeps all night and does not come in our room when she wears them. Dawn Jennerjohn ========================================================================= Date: Wed, 8 Apr 1998 23:53:23 +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: speech, etc. In-Reply-To: <e4818d31.352be366@aol.com> MIME-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7BIT

I'm hardly an expert on sign language, but from what I've learned of it, there is some finger dexterity needed for some of the more complex signs -- and for finger spelling (not an issue with little guys, anyway). Many signs are broader motions, not really dependent on finger dexterity -- especially things like hungry, thirsty, help, etc.

Judy

> I do have a question with relation to the sign language. Forgive me for > sounding naive, but does the fact that our kids are missing digits interfere > with using sign language at all? It sounds like a great idea for them to > ========================================================================= Date: Thu, 9 Apr 1998 20:23:56 +1000 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Carol & Jason <carolh@HOTKEY.NET.AU> Subject: Re: At the risk of... MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

Hi,

Could you please let me know what breath right strips are, sounds interesting and I have not heard of these before?

Thanks Carol

DnJJenner wrote:

> In a message dated 98-04-08 17:05:00 EDT, you write: > > << When he was 15 months old, I had had enough > of rocking every time he woke up so we got a full size mattress with some > objects under the head of the bed to elevate it. We think the reason he is > waking is that he cannot breath properly and wakes himself up. > > Hi I'm sorry if I keep saying this over and over again, but we just Love > them! We use Breath Right strips.. the small ones... it is easier we > found if they are sleeping first when you put them on, and clean thier nose > with a little alcohol first so it will stick, atleast we do because Courtney > sweats alot sometimes... > but they really do work, Courtney sleeps all night and does not come in our > room when she wears them. > Dawn Jennerjohn ========================================================================= Date: Thu, 9 Apr 1998 11:04:08 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: DnJJenner <DnJJenner@AOL.COM> Subject: Re: At the risk of... Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Carol~

They are little strips that go over the bridge of your nose, and open up the air way. we first heard of them because of football, atheletes use them. they are in a purplr,whit,and green box, Breathe Right nasal strips, Jr/small size we find them in the Pharmacy section at just about any store. if you can't find them let me know..

Dawn J ========================================================================= Date: Thu, 9 Apr 1998 15:41:31 -0400 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: foster <foster@ICONTECH.COM> Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

Hello to everyone. Hope this rainy day find everyone feeling well.

Hope Jonathan continues to do well after his hand surgery.

I am sorry to hear that Sarah is in the hospital but hope she gets well and comes home soon.

Billy had a few bad nights of screaming after his cranial surgery and he could not be rocked back to sleep right away. What I would do he let he up and I would walk around the house showing him that everyone was in their beds and talk to him. I would bring him down stairs and give him some juice and wee would play for a little while. Usually after about a half hour he wound go back to sleep. I know this was easy for me because I did not have to get up for work but it only lasted a few days. We had a much harder time getting him in his car seat to go anywhere at night we think that was because he went to the hospital this last time in the middle of the night and when he came home this crying started. He is pretty good about it now. He has always slept in his crib which we keep in our room.

He has trouble breathing at night and his nose is very stuffy so we squirt alittle saline which is sodium chloride which we used alot befor e we would suction him when he was afew month old. There are many such solution over the counter .It really works well for him and improves his breathing a great deal.And being that it is only salt it ihas no side effects.Of course we have to be careful when putting them in because it would sting the eyes. I have heard about the strips but our doctor says he is old enough to get them off and would possibley get it in his mouth.

Hope everyone has a wonderful holiday and as always our prayers remain for everyone.

Karen (PA) ========================================================================= Date: Thu, 9 Apr 1998 17:08:31 -00700 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: The Smiths <dsprado@PENN.COM> Subject: An Easter Thought - from The Smiths

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<A HREF="http://www.bluemountain.com/cards/box3347x/ou765nxikzcyevi.htm">http://www.bluemountain.com/cards/box3347x/ou765nxikzcyevi.htm</A>

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____________________________________________________________ Accessing your card indicates your agreement with our Website Rules posted at the bottom of the following Web location: (You're welcome to send a free card to someone at this location) http://www.bluemountain.com ========================================================================= Date: Thu, 9 Apr 1998 17:46:40 -00700 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Felipe Ize and Family <ize@TACOMA.CEATLABS.OKSTATE.EDU> Subject: Easter Egg Hunt - from Felipe Ize and Family

Guess what!! Felipe Ize and Family has just sent you an animated greeting card You can pick up your personal greeting by connecting to the following WWW Address

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____________________________________________________________ Accessing your card indicates your agreement with our Website Rules posted at the bottom of the following Web location: (You're welcome to send a free card to someone at this location) http://www.bluemountain.com ========================================================================= Date: Thu, 9 Apr 1998 21:11:34 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Yonstein <Yonstein@AOL.COM> Subject: Vitamin Therapy?? Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Hello all:

Sorry to hear that Sarah is in the hospital. Hope she recovers quickly.

I have a question to everyone. Has anyone heard of or had their children on vitamine therapy. There is a company Nutrichem that has a dietary supplement program called MSB Plus. It's been proven, they say, for helping kids with Down Syndrome. I know that it's based on amino acids to help build up protein. I was just wondering if something like this could help our kids also, possibly with the low muscle tone that they have.

Any feedback would be appreciated. Also if anyone is interested their web site is www.nutrichem.com. They are a Canada based company.

Hope all is well with everyone.

As always, praying for BJ and the Kilner family.

Best wishes,

Janine Krebs ========================================================================= Date: Thu, 9 Apr 1998 21:49:51 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: GSieb91515 <GSieb91515@AOL.COM> Subject: Re: Vitamin Therapy?? Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Janine,

I saw a segment on 20/20 (I believe) about this and the results were amazing. Thanks for the address.

Brenda ========================================================================= Date: Thu, 9 Apr 1998 22:03:14 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: GSieb91515 <GSieb91515@AOL.COM> Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Joanne,

Seems like things are looking up. I'm so happy for you and good luck on Saturday. I have a mental picture of you sitting in that park blowing bubbles. It brought a smile to my face and made my day. Take care.

Brenda Houston ========================================================================= Date: Thu, 9 Apr 1998 19:25:08 -0700 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Lark Jarvis <lark@INVOLVED.COM> Subject: Re: Vitamin Therapy?? In-Reply-To: <3fcb9de1.352d71c8@aol.com> Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

At 09:11 PM 4/9/98 EDT, you wrote: > >I have a question to everyone. Has anyone heard of or had their children on >vitamine therapy. There is a company Nutrichem that has a dietary supplement >program called MSB Plus. It's been proven, they say, for helping kids with >Down Syndrome. I know that it's based on amino acids to help build up >protein. I was just wondering if something like this could help our kids >also, possibly with the low muscle tone that they have. > >Any feedback would be appreciated. Also if anyone is interested their web >site is www.nutrichem.com. They are a Canada based company.

Hi Janine,

I've never heard of the company you mentioned, but I did want to put in a plug for nutritional approaches in general. I saw a story on one of the newsmagazines a year or so ago on supplementation specifically for Downs Syndrome, and it seemed to really, urgently make sense. (Researchers have known for years that there are metabolic differences with Downs, but there has been very little work done on it until now--perhaps because of discrimination because of the facial feature issues--who knows . . . ) Anyway, supplementation gets overlooked way too often. (For example, the autistic adults with whom I work have been observed to increase in self-injurious behavior, etc. when their nutritional supplements run out, and for some, diet means the difference between functioning and not functioning . . . )

I attended a workshop a few weekends ago at the HANDLE Institute in Seattle (HANDLE stands for Holistic Approach to NeuroDevelopmental and Learning Efficiency--they treat all sorts of neurological issues, from ADHD, PDD, autism, etc. holistically and without drugs), and there was a segment specifically on nutrition and food allergies. One of the the major things that was mentioned was Omega-3 fatty acids (the type found in fish, or better, flax seed oil). This type of fatty acid is the type that is used by the body to myelinate developing neural pathways. It was suggested that a tablespoon a day be used as a supplement. This is the sort of fish-oil that people in Asian cultures get lots of.

Incidentally, HANDLE also works with Downs-affected people, and its founder, Judith Bluestone, said that while obviously there are no "cures" for an extra chromosome, there are some very helpful things that can be done. For example, the "characteristic" facial features can be mitigated greatly, because they are caused, in large part, not by structure but by low muscle tone. HANDLE approach considers muscle tone a "foundation" system, developmentally, and employs many exercises to increase it on a very basic level. Their website is http://www.handle.org Their method has been called, by some, the only approach out there that employs a true developmental perspective in its work. There are some exercises on the website, I believe . . .Muscle tone is a biggie for them.

Anyway, I just wanted to agree, and put in a plug for nutritional approaches in general. Everything I've read on this list so far (the endocrine issues, etc) leads me to believe that Aperts must be one of those syndromes which includes a slightly anomalous metabolism--and nutritional approaches are really the only way there is to address that. Lark Jarvis, LMT Portland, OR ========================================================================= Date: Fri, 10 Apr 1998 05:57:48 +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: Five O'clock

Hello Family!

It's five in the morning. I just woke after a really bad dream. I wanted to share it with you but when I started writing about it, realized we would be here all day. It was a sad dream and I believe my spirit is trying to tell me something. Actually, two morals.

One, love your family and tell them so frequently. They are all you have and will not be here forever.

Secondly, do your best at EVERYTHING you do.

I know these things sound trite but from my vantage point they are profound. I am living through both right now and paying a price.

Joanne, in Ohio

_____________________________________________________________________ You don't need to buy Internet access to use free Internet e-mail. Get completely free e-mail from Juno at http://www.juno.com Or call Juno at (800) 654-JUNO [654-5866] ========================================================================= Date: Fri, 10 Apr 1998 10:00:39 -0400 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Leanne Maclean <lmaclean@NETCOM.CA> Subject: TV show MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii

Happy Easter Everyone!

I just wanted to post the name of a show we watched last night that dealt with craniofacial surgery and included children with Apert's and Crouzon's. It is a Canadian production and had both Canadian and American surgeons on it. It is called "David Suzuki's The Nature of Things - Out of the Shadows". If it airs in your area it is definately worth watching. I wasn't able to tape it so I am going to see if About Face has any copies and if that fails I'll try contacting the Canadian Broadcasting Corporation.

David Suzuki also writes some fantastic science related books geared for children.

Hope the Easter Bunny arrives safely at everyones house. We spent last night dying eggs!

Leanne Maclean Alberta, Canada ========================================================================= Date: Fri, 10 Apr 1998 08:53:08 -0600 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: baconsmith <bluenose@TELUSPLANET.NET> Subject: Re: TV show Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

Dear Leanne. I saw it too and I taped most of it. I caught it just as it wazs starting and ran up to get my tape. So I have it complete with commercials.

CBC has a website, but I didn't have time to do any searching for that particular program ... May be a way to order the show directly from CBC tho, don't you think?

Anyway, it was an excellent program, wasn't it?

If you cannot get copies from CBC, I'll send you mine and you can duplicate it, okay?

Pat in Calgary

> >Happy Easter Everyone! > >I just wanted to post the name of a show we watched last night that dealt >with craniofacial surgery and included children with Apert's and >Crouzon's. It is a Canadian production and had both Canadian and >American surgeons on it. It is called "David Suzuki's The Nature of >Things - Out of the Shadows". If it airs in your area it is definately >worth watching. I wasn't able to tape it so I am going to see if About >Face has any copies and if that fails I'll try contacting the Canadian >Broadcasting Corporation. > >David Suzuki also writes some fantastic science related books geared >for children. > >Hope the Easter Bunny arrives safely at everyones house. We spent last >night dying eggs! > >Leanne Maclean >Alberta, Canada > > email to: bluenose@telusplanet.net IM: onlypeach shake and shake the ketchup bottle. none will come and then a lot'll ... unknown ========================================================================= Date: Fri, 10 Apr 1998 11:04:35 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: TheMorenos <TheMorenos@AOL.COM> Subject: Re: Five O'clock Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

In a message dated 4/10/98 4:53:33 AM, you wrote:

<< One, love your family and tell them so frequently. They are all you have and will not be here forever.

Secondly, do your best at EVERYTHING you do.

I know these things sound trite but from my vantage point they are profound. I am living through both right now and paying a price.

Joanne, in Ohio >>

Great words to live by. Sincerely robin moreno ========================================================================= Date: Fri, 10 Apr 1998 09:28:37 -0600 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Sherrie <sdwarner@ROF.NET> Subject: Sign Language Mime-version: 1.0 Content-type: text/plain; charset="us-ascii" Content-transfer-encoding: 7bit

The child that I see with Aperts uses signs that have been modified according to his abilities. All children that I see with special needs are taught sign modifications and approximations that they are able to do and then everyone that is involved with them is shown their sign modification so they understand them. The parents and caregivers and teachers often have to be taught the signs anyway so it is really fairly easy to teach them the modification as well...especially since at least one significant person in the childs life is present or nearby. Sherrie ========================================================================= Date: Fri, 10 Apr 1998 16:38:44 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: GSieb91515 <GSieb91515@AOL.COM> Subject: Welcome to Holland Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

I was reading the latest newsletter from the cranio facial support gruop from England and came across the following. Thought I'd pass it along.

Welcome to Holland by, Emily Pearl Kingsley (a mother of a child with Down's Syndrome)

I am often asked to describe the experience of raising a child with a disability. It's like this. When you're going to have a baby, it's like planning a fabulous vacation trip to Italy. After months of anticipation, the big day finally arrives. The plane lands and the flight attendant announces, "welcome to Holland". "Holland", you say. "What do you mean, Holland? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy." But there's been a change in flight plan. The plane has landed in Holland and there you must stay. The important thing is that they haven't taken you to some horrible disgusting place. It's just a different place. So you must go out and buy new guidebooks. You must learn a whole language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower paced than Italy. But after you've been there for a while and you catch your breath, you look around and you begin to notice that Holland has tulips and Holland even has Rembrandts. But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say, "Yes, that's where I was supposed to go. That's what I had planned." And the pain and disappointment will never go away, because the loss of that dream is a very significant loss. But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very unique and the very lovely things about Holland.

Hope you enjoy this as much as I did.

Bob H. - Your post about Krista's "wiggling" was in the newsletter as well as Joanne's introduction that I loved so much I am keeping in Jonathan's scrap book.

If anyone is interested in joining this support group let me know, they do a great newsletter.

Happy Easter to everyone!

Chris, Reggie, and Blair - You are in our thoughts and special prayers during this time.

Marjorie - We are wondering how BJ is doing. Please let us know if you can. You continue to be in our prayers as always.

Brenda Siebert ========================================================================= Date: Fri, 10 Apr 1998 16:09:18 -0700 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Robyn Johnston <robyn@ORDATA.COM> Subject: Brenda - more on nightfrights Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

Hi Brenda,

>>We have used Versed for the last 2 surgeries which makes Jonathan drowsy >>enough to not know what's going on.

I finally just got the time to find the name of the medication in my files...it was called 'rectal methohexital premedication' and was given as a suppository before Brenna's surgery. She fell asleep (totally out) in my arms within 10 or so, minutes in preop. We had tried Versed before previous surgeries, but this one worked better for us. Maybe it was less stressful to administer? or maybe the overall effect was more calming? I am not sure, I have never taken the stuff myself. MAybe I should next time! ;-) Anyways, I will probably suggest it again for our next surgery as the results were so much better for Brenna.

>We have never been in the >>room when Jonathan wakes up from surgery but immediately thereafter in ICU or >>recovery. Maybe that's where we need to demand our presence.

Some hospitals allow this, others do not. We were lucky that I was able to be there is post op immediately when she woke up. I do have to admit being assertive though! ;-)

BTW - when she had night frights, I eventually just held her tight in my arms - in bed, between me and my husband and just calmed her everytime she woke up. Actually I do think we gave her the bottle if I remember right. If I could catch her at the onset of a scare, she calmed down faster than if she was in her own crib and woke up completely. As soon as the nights became peaceful again, without the scares, we let her go back to her own crib luckily without a conflict.

>Needless to say I'm not very sharp for work the next >>day. Hopefully, this will ease up soon.

This is why we finally brought Brenna to our bed. It is too much for anyone to be up all night every hour trying to calm a hysterical child - just to have it be repeated within the next hour or two. If she was in our bed, we were at least only semi-conscious for these scares. It did help us, as well as her. And, they did go away! Thank goodness.

Good luck! Hugs, RObyn Johnston ========================================================================= Date: Fri, 10 Apr 1998 16:09:20 -0700 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Robyn Johnston <robyn@ORDATA.COM> Subject: Re: Hand Surgeons Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

> I >think it is very important that doctor have a lot of experience with apert >children in particular. Where does this doctor practice in Texas? > I will second this! ASK, ASK, ASK, about their experience! Robyn Johnston ========================================================================= Date: Fri, 10 Apr 1998 16:51:16 -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: Lark Jarvis <lark@INVOLVED.COM> Subject: Re: Five O'clock In-Reply-To: <19980410.055753.6574.0.chanan8@juno.com> Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

At 05:57 AM 4/10/98 +0000, you wrote: >One, love your family and tell them so frequently. They are all you have >and will not be here forever. > >Secondly, do your best at EVERYTHING you do. > >I know these things sound trite but from my vantage point they are >profound. I am living through both right now and paying a price.

Joanne, I don't know anything about your specific situation, but I felt moved to comment on something that you said (again, I have no idea exactly how you meant it, or what the circumstances of your dream or life are--this is just my own personal stuff. I think it's relevant here because after hanging out in "facially different" circles for a few years, I've started to see a pattern (again, not referring to you in particular, 'cuz I don't know).

If you saw _The Hunchback of Notre Dame_ a couple of summers ago, you'll recognize this set of attitudes as the one that the evil Archbishop tried to indoctrinate Quasimodo with--and I think it happens quite a lot, unfortunately, to people born with facial difference. The attitude is, "we're you're family, and we're all you have in the world, and the world out there is cruel." This serves the family system really efficiently, and it can happen in any number of ways, from the most subtle and honestly unintentional to the most blatantly cruel. (and it isn't at all necessarily limited to people with facial difference, but because of the surgeries and the teasing, we seem to be especially vulnerable. Studies have also shown, BTW, that people with long childhood medical histories tend, for better or worse, to be much more strongly bound to their families than is normal, and that this can create some problems, at times. At the times when we're developmentally supposed to be separating (ie, adolescence) most of us are still having surgery, etc, and really need our families a great deal, still)

The fact is, the family you're born with is just that--and thankfully, it isn't necessarily ALL you'll ever have.

I bought a book today entitled _Family by Choice: Creating Family in a World of Strangers_. Here's an excerpt from the book jacket:

"Many of us spend holidays with close friends. Many parents swap childcare and meal preparation with other parents. Many of us have friends 'who know where we keep the silverware, and know how to jiggle the handle on our toilet when it's stuck.' These are families by choice.

_Families by Choice_ states that 'we have, rooted in our genes, a desperate craving for warm, caring bonds with other people.' Because these bonds may not be present in their natural families, people seek familylike relationships with nonrelatives. Ahern and Bailey investigate how today's people, through their neighborhoods, places of work, 'cyber families,' and religious communities, create a network of friends they consider family--their intentional families." (end quote)

Again, I have no idea how relevant that is or isn't, but it seemed to jump out at me. Also, I ran across a book the other day (about the numerous out-dated attitudes, belief, etc. that keep people single) that spent a whole chapter talking about how destructive the attitude, "my family of origin is all I have in the world" can be to someone who's looking to form a relationship. I wouldn't mention it, either, except that that's another common pattern that I've begun to recognize in the "facial difference community."

I really hope your day got better after 5 this morning, and that you'll disregard any of this that doesn't seem to fit. That's just what popped off the top of my head as someone who's struggling with those "early 30's, where to go from here" issues.

Lark (almost 30, with bilateral CL/P) ========================================================================= Date: Fri, 10 Apr 1998 21:50:22 -0400 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jack and Raquel <jara1@BELLSOUTH.NET> Subject: Hello everyone, I'm back... MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

I've been away from the computer the last couple of days, pretty busy with company, baseball games, etc.

But I'm now all caught up.....

Lisa...Nicole also cried a lot when she was first born, I'd say the first 2 to 3 months...I mean she cried a lot...cat naps was all she took then cried, drank some formula, cat naped and cried, need I say more? It was horrible I constantly found myself saying Calgon take me away.....I must say though Nicki is now 6 months old and she has gotten a lot better, she has her moments once in a while but no more of that constant screaming.

To: Carol, Judy, Dawn, Jenn and Ann, thanks for all of your advise on the sleeping etc. I think Nicki's main problem and reason for such frequent wake ups is her breathing. I have become such a light sleeper that I hear it coming, she makes a snorting like noise and then it comes she starts with a low whine and if I don't stick the bottle in her mouth the loud crying will begin. I guess since I or better say we are sooooo tired of hearing her cry that we will do everything in our power to have it not happen. ALL THAT I KEEP TELLING MYSELF IS, THIS TOO SHALL PASS... I do want to tell all of you that I am getting so nervous with the up coming surgery its less then 4 weeks away. I'm eating like a wild woman, I'm going to have to make a trip to the mall to buy a bigger size because my cloths is not fitting me, tight as heck. But I know until we get over this first surgery I cannot even dream of dieting, but I'm afraid if I don't do something quick Jenn over in Tampa will hear the loud explosion.

Anyway please, if there is any advise anyone can give us with this surgery it is so welcome. I know most of you have been in our shoes already and you know how we must be feeling. So please anything you can tell us, we would love to hear from you. The first surgery that she is having our doctor is calling it Cranial vault remodoleing. Nicki will be 7 months old at the time of her surgery.

Thank you all and may you all have a wonderful Easter....

P.S. to the Smiths & Ize's the animated cards were great...thanks.

P.S. Joanne good luck tomorrow...keep that chin up.....

Raquel Miller, in sunny starting to get muggy south Florida..... jara1@bellsouth.net ========================================================================= Date: Fri, 10 Apr 1998 21:50:01 +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: Welcome to Holland

Brenda,

I would like to have a copy of the newsletter you mentioned. I asked those who were reproducing my information to please send me a copy, but did not hear back from them. can you please send me a copy? If so, can I send you my snail mail address privately? Thanks!

Lark,

I thought about my message all day and realized I omitted one important word. FRIENDS. The first moral should have read: Love your family and FRIENDS, and tell them so frequently. They are all you have and will not be here forever. I just returned home and took the first opportunity to edit it.

Joanne, in Ohio

_____________________________________________________________________ You don't need to buy Internet access to use free Internet e-mail. Get completely free e-mail from Juno at http://www.juno.com Or call Juno at (800) 654-JUNO [654-5866] ========================================================================= Date: Fri, 10 Apr 1998 22:01:21 +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>

LARK -

CAN I SEND MAIL TO YOUR PERSONAL ADDRESS???

JOANNE

_____________________________________________________________________ You don't need to buy Internet access to use free Internet e-mail. Get completely free e-mail from Juno at http://www.juno.com Or call Juno at (800) 654-JUNO [654-5866] ========================================================================= Date: Fri, 10 Apr 1998 22:21:21 -0700 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Lark Jarvis <lark@INVOLVED.COM> In-Reply-To: <19980410.220126.10318.2.chanan8@juno.com> Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

At 10:01 PM 4/10/98 +0000, you wrote: >LARK - > >CAN I SEND MAIL TO YOUR PERSONAL ADDRESS??? > >JOANNE > yep--it's lark@involved.com> >_____________________________________________________________________ >You don't need to buy Internet access to use free Internet e-mail. >Get completely free e-mail from Juno at http://www.juno.com >Or call Juno at (800) 654-JUNO [654-5866] > ========================================================================= Date: Sat, 11 Apr 1998 09:56:58 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Yonstein <Yonstein@AOL.COM> Subject: Easter-Passover Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Hello All,

I just wanted to wish everyone a Happy Easter and Passover. Hope everyone enjoys the holidays.

Thanks for the greeting cards. They were great.

Hope tonight is fun for you Joanne.

Hope all is well in the Kilner and Harmon houses. Thinking of you during the holiday.

Best wishes to all.

Janine Krebs

P.S. Thanks for the response on vitamin therapy. It's worth looking into some more. ========================================================================= Date: Sat, 11 Apr 1998 18:45:05 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jenngram <Jenngram@AOL.COM> Subject: Re: Easter-Passover Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Hello All..I wanted to wish everyone a great holiday weekend as well. One of the advantages of living in Florida is you get many visitors this time of year. Our house is resembling Motel 6 these days. With everyone coming and going at all hours, it seems I just "leave the light on" for them!!!!!! It makes me long for those Spring Break days again!!!!!! But it has been enjoyable!!!

Joanne, good luck tonite..keep us posted. Our thoughts,as always, are with the Harmons and Kilners. Hope Johnathon is continuing to recover nicely.

Have a good one Jenn (Tampa/St. Pete) ========================================================================= Date: Sat, 11 Apr 1998 18:38:36 -0600 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: baconsmith <bluenose@TELUSPLANET.NET> Subject: Re: Hello everyone, I'm back... Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

Dear Racquel. Surgery soon. I know that nervous tension that just keeps percolating in the back of a person's mind, waiting to get it over with. Hoping that it all comes and goes quickly. I also get the tension happening as we run up to surgery -- the operation my daughter had last year was probably one of the 'biggies' that we will face, the others seem less scary by comparison.

I don't know much about the cranial vault remodeling other than what I have learned here and seen on that program Leanne mentioned. It is pretty 'hairy' stuff, if you don't mind my saying. Yet, when I hear the doctors talk, they seem so calm that it gives me calmness too.

Well, I think I've said this before, but I'll say again, anyway: nutrition, physical exercise, mental exercise, and deep breathing. These are my watch words when we head toward surgery.

I try to eliminate as much junk food as I can from the house-- (not completely successful) and stock up on the fresh stuff. Really watch the fluid intake -- lots of water and juices and milk. (Sounds like a recording from Mom doesn't it ;-) Don't try to diet, but instead, do make consciously healthy choices. Increase lots of grains, pastas for your B vitamins.

Walk if you can instead of driving anywhere or cycle. Take Nicki out in her stroller and do a circuit at a reasonable clip. Or do some time on a stationery bike. Whatever works for you. Staying physically active can do wonders for reducing the tension that is building -- lets the steam off.

Think beyond Nicki's surgery -- down the road a few months or even a few weeks. Pick a place in your mind where you can really smell the air and feel the wind or the sunshine . Deliberately and consciously play out a scene in your head, Nicki all recovered, maybe the two of you sharing her first ice-cream cone under a favourite shade tree, or blowing bubbles in the tub. And then mentally take in the colours, the temperature, the scene, the textures, Nicki's gorgeous little countenance smiling and drooling at you .. and then summon that scene up a couple of times a day -- like meditating on it. And then, when the demons come at you, you can invoke the future and send them packing!!

And finally, remember to breathe -- in and out. Breathing is a great thing to do when the stress begins to build. ;-)

With best wishes for some tranquility over the coming weeks. Pat Bacon in Calgary email to: bluenose@telusplanet.net IM: onlypeach shake and shake the ketchup bottle. none will come and then a lot'll ... unknown ========================================================================= Date: Sat, 11 Apr 1998 20:31:01 -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: ize <ize@TACOMA.CEATLABS.OKSTATE.EDU> Subject: Re: TV show MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

CBC has a website, but I didn't have time to do any searching for that particular program ... May be a way to order the show directly from CBC tho, don't you think?

You can see this site at: -http://www.tomgreen.com/cbcnews/green.html

Happy Easter to all!

The Ize's. ========================================================================= Date: Sat, 11 Apr 1998 22:06:22 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: GSieb91515 <GSieb91515@AOL.COM> Subject: Re: Hello everyone, I'm back... Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Raquel,

We just had the cranial vault done at 15 months and it has only been 2 weeks and 3 days post op. Jonathan is 99% back to his old self again. I must tell you I think you will be glad you did this surgery now. We wish we had of done it with Jonathan's cranioplasty and forehead advancement when he was 6 months old. However, it was not recommended to us by that surgeon. The results from the total vault are unbelievable. Now that most of the swelling has gone done you can really see what a difference this surgery made. Jonathan looks great! I don't think anyone would know that Jonathan has apert syndrome if they didn't see his hands or the still prominent scar across his head. I too was extremely nervous for this and J's 6 mo. cranial surgery. The best thing I can tell you is the same as Pat. Think past the surgery to a happy time. I am soooo glad we did this surgery and I think you will be too when it's all said and done. Let me know if you have any specific questions regarding the surgery itself and recovery. Who is your surgeon?

Best Wishes,

Brenda Siebert GSieb91515@aol.com ========================================================================= Date: Sat, 11 Apr 1998 22:19:41 +0000 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "J. G. Lindamood" <chanan8@JUNO.COM>

Dear Family,

First of all, I want to thank all of you for the out pouring of support you have given me. And that applies to the whole and not just this new adventure I am having! It is wonderful to come home at night to my family and share my life. It beats talking to two cranky birds demanding their dinner and not chatter from me!

Tonight, deep sigh, was great! It was difficult for me, I will admit, to focus on the service and not on the other (person) people. But, I did hear the message and actually learned a thing or two. I hope I didn't miscommunicate something, like I did with my mom, but Mike invited me, but not as a "date". We really didn't know if the other was going to be there tonight. I was kinda anxious as I arrived late, (with my girlfriend) and did not see him right away. ) Focus Joanne, focus :-) Well, he did show up, but I really couldn't remember what he look like and we both had our shades on and I was sitting on the table etc.. is that him or not??... anyway, once I "forgot" about him, I enjoyed the service. After the service I was begging my friend to give me some advice about do I approach him or not??? she was of zero help! He approached me and the three of us talked for a bit. It was fine. The church as a whole didn't seem really welcoming. Where I attend regularly, I had met most of the congregation my first Sunday there, thanks to the pastor. i do know that this might be the exception. Meeting people does take time.

I will not be going back next week, don't want to appear anxious, and I do have class so it will be a long day. It is a "wait and see" situation now.

I appreciated Pat's, from Calgary, advice on tension release. Hope Nikki's surgery goes well. Hope Johnathon is recovering nicely.

HAPPY EASTER EVERYONE! Joanne, blue skies and a beautiful full moon!, in Ohio

_____________________________________________________________________ You don't need to buy Internet access to use free Internet e-mail. Get completely free e-mail from Juno at http://www.juno.com Or call Juno at (800) 654-JUNO [654-5866] ========================================================================= Date: Sun, 12 Apr 1998 11:59:59 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: ize <ize@TACOMA.CEATLABS.OKSTATE.EDU> Subject: Re: TV show MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

Pat wrote,

CBC has a website, but I didn't have time to do any searching for that particular program ... May be a way to order the show directly from CBC tho, don't you think?

Hello to all,

You can see this site at: -http://www.tomgreen.com/cbcnews/green.html Just click your mouse on the left top of the page. Tapes of many of there news and current affairs programs are available. For more information or to order a tape call 1-800-363-1281.

Hope it helps. The Ize Family. ========================================================================= Date: Sun, 12 Apr 1998 13:17:28 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Yonstein <Yonstein@AOL.COM> Subject: Re: Cranial Vault Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Brenda:

I am glad to hear Jonathan is doing so well. I was wondering if you could explain to me more about the cranial vault. Does that reshape the back of the head also? Emily had the forehead advancement when she had the sutures done at 3 months old. I am curious about the cranial vault and what exactly that does for them.

Pat, I loved your advice. Those are things that I use in my daily life, i.e., breathing and imagining other places, safe places, to make me feel better as anxiety seems to follow me wherever I go in my life. Anyway, it's great advice.

Hope everyone is doing well.

Best Wishes,

Janine ========================================================================= Date: Sun, 12 Apr 1998 19:00:43 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jenngram <Jenngram@AOL.COM> Subject: Re: Cranial Vault Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Raquel,

Just wondering, which of Nicoles sutures are fused...do you know? And does anyone know if the cranial "vault" remodeling ismostly reccommended to those with multiple suture fusion (ie..bicoronal and lamboid) as opposed to simply bicoronal stynosis. Just curious!!

Jenn(Tampa/St.Pete...very tired and bored as all of our company has headed home) ========================================================================= Date: Sun, 12 Apr 1998 19:59:40 -0400 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jack and Raquel <jara1@BELLSOUTH.NET> Subject: Cranial Vault MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

Janine, the way the doctor explained it to us yes the back of the head will be reshaped along with the forehead advancement. He demonstrated by taking a balloon and pushing it down from top to bottom and stated that simply the head should grow that way as opposed to up like a cone head.

Jenn, Nicki's head has shown a substancial growth upwards, therefore giving her more of the Apert look, but our doctor explained to us that once the surgery is done this will change like Brenda explained. I'm not sure exactly which of her sutures are fused and of course you being a doctors wife just blows me away with the medical terminology.

Pat thank you so much for your advice we will definetly take it.

Brenda our surgeon is Dr. Anthony Wolfe, we have heard only good things of him. We have seen some of his work and frankly we were amazed and what he showed us was work that he has done on Apert kids. The before and after picutures were amazing.

Nicki will have her own web page along with the rest of Teeters friends soon (RIGHT DON??) so there we will be able to post before and after pictures and you all will be able to meet our beautiful Nicki and her sisters and brother.

I hope all of you bare with me these next couple of weeks because I might start asking a lot of questions as the time of surgery approaches.

Again I thank you all soooo much for your advice and most of all the support. Its incredible how we don't personally know each other but it feels like we do and its that bond that we have the great bond our children.

May all of you have a good night and I hope you all had a great Easter together with your family.

God Bless you all....

Raquel Miller jara1@bellsouth.net ========================================================================= Date: Mon, 13 Apr 1998 08:28:56 -0400 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Don Sears <dsears@SCRS.STATE.SC.US> Subject: Re: Cranial Vault MIME-Version: 1.0 Content-Type: text/plain

> -----Original Message----- > From: Jack and Raquel [SMTP:jara1@BELLSOUTH.NET] > Sent: Sunday, April 12, 1998 8:00 PM > To: APERT@LISTSERV.AOL.COM > Subject: Cranial Vault > > [Don] >> Nicki will have her own web page along with the rest of > Teeters friends > soon (RIGHT DON??) [Don] >> > > > Everyone will!!! Just as soon as this nightmare tax season ends. I > plan to 'relax' this coming weekend by scanning all those smiling > faces. I'm really looking foward to it! :) > ========================================================================= Date: Tue, 14 Apr 1998 08:17:00 -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: any news on BJ? MIME-version: 1.0 Content-type: text/plain; charset="us-ascii"

Has anyone heard how BJ is doing. I had some computer problems and I thought I might have missed an update. I hope everyone is doing well!!

Daryl fell a couple of weeks ago and busted his eyebrow. He needed four stitches to close up the gash. To say the least I was scared, but calm. Has anyone else had an experience like this. I must say that it is scary for anyone, but I couldn't help but think of the plates and screws in his head. I just knew that he probably had landed right on one. Everyone kept telling me that that is just what happens with little boys, and I agree, except, that these kids heads are a little more "pricey" than most! And they have a little more hardware, too!Ha...ha...

The Kilners and Harmons are still in our prayers!

Denise Graham ========================================================================= Date: Tue, 14 Apr 1998 11:42:00 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Bob Horning <Bob.Horning@CORP.HONEYWELL.COM> Subject: Re: any news on BJ?

Denise

Krista has taken big falls a few times and it certainly does scare you. Her elbows and shoulders are fused, so she can't catch herself very well and usually ends up hitting her head as well as other parts of her body. Her most recent tumble was a week ago - she broke her wrist in the process.

Usually if she hits her head she will get a black eye, and it sometimes doesn't show up for nearly a week after the fall. It can range from just slightly bruised looking to really black depending on how hard she hit. Her surgeon said this is pretty typical for about three years after surgery, and by then it becomes permanent enough that the black eye doesn't happen.

Bob Horning _______________________________________________________________________________ From: Chad & Denise Graham on Tue, Apr 14, 1998 8:17 AM Subject: any news on BJ? To: Information exchange and Internet safe haven for Apert Syndrome

Has anyone heard how BJ is doing. I had some computer problems and I thought I might have missed an update. I hope everyone is doing well!!

Daryl fell a couple of weeks ago and busted his eyebrow. He needed four stitches to close up the gash. To say the least I was scared, but calm. Has anyone else had an experience like this. I must say that it is scary for anyone, but I couldn't help but think of the plates and screws in his head. I just knew that he probably had landed right on one. Everyone kept telling me that that is just what happens with little boys, and I agree, except, that these kids heads are a little more "pricey" than most! And they have a little more hardware, too!Ha...ha...

The Kilners and Harmons are still in our prayers!

Denise Graham ========================================================================= Date: Tue, 14 Apr 1998 13:00:13 -0400 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: foster <foster@ICONTECH.COM> Subject: Re: any news on BJ? Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

> Has anyone heard how BJ is doing. I had some computer problems and >I thought I might have missed an update. I hope everyone is doing well!! > >Daryl fell a couple of weeks ago and busted his eyebrow. He needed four >stitches to close up the gash. To say the least I was scared, but calm. >Has anyone else had an experience like this. I must say that it is scary >for anyone, but I couldn't help but think of the plates and screws in his >head. I just knew that he probably had landed right on one. Everyone kept >telling me that that is just what happens with little boys, and I agree, >except, that these kids heads are a little more "pricey" than most! And >they have a little more hardware, too!Ha...ha... > > The Kilners and Harmons are still in our prayers! > > > Denise Graham > > Denise,

Hi. We have not had any updates on BJ for a while now. Hope that means that he is doing well. Sorry to hear that Daryl fell and I understand completly how worried that would make you . I agree that the plates and screws are an added concern but they are pretty solid and would take alot more of a trama to cause them any trouble. Five of my seven children have had stitches before the age of five. Everyone was just as upsetting as the last. Who ever said that being a mother is never easy was a very smart person. I guess the same can be said for fathers.

Bye Karen (PA) ========================================================================= Date: Tue, 14 Apr 1998 13:14:20 -0400 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: foster <foster@ICONTECH.COM> Subject: Krista Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

Bob,

Sorry to hear about Krista wrist. That is something I have never dealt with because some how so far we have had no broke bones. How we managed that I don't know. Billy's PT is always telling me that his upper body is not as strong as his lower and that his refexes are not completely up to par. She said we should not incourage him to walk until they are stronger because if he falls from a standing up posistion he is more likely to get a more serious injury than sitting. So we are working at the upper body. I think that all kids are clumsy when the first start to walk and for along time after wards.Anyway hope Krista is doing well after this unfornate experence.

Karen(PA) ========================================================================= Date: Tue, 14 Apr 1998 15:38:36 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jenngram <Jenngram@AOL.COM> Subject: Re: hands Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Posing a general question....How many of you have experienced a bony fusion with the fingers? And if so, were they able to create all 4 fingers regardless? There was some talk w/ our doctor and he made a nonchalant comment thats bothering me regarding bony fusions. Joes seen Jordans x-rays so I have to wait until he gets home to find out if Jordan has it or not. But the doctor indicated that if the had a bony fusion they would have problems creating all 4 fingers. Just wondering..Jordans hands are pretty bad, but it appears the worst is w/ the thumbs, not the first three fingers where the doctor indicated the bony fusion may be.

Sorry if this is confusing. Thanks in advance for the info.

Jenn(Tampa/St. Pete) ========================================================================= Date: Tue, 14 Apr 1998 15:32:43 -0700 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Robyn Johnston <robyn@ORDATA.COM> Subject: Re: any news on BJ? Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

Hi Denise -

>Has anyone else had an experience like this. I must say that it is scary >for anyone, but I couldn't help but think of the plates and screws in his >head. I just knew that he probably had landed right on one.

Brenna gave us a scare near Christmas time, no stiches though but a pretty good shiner. The same thoughts went through our head too. She fell off the top of a 3 foot slide - onto carpet thank goodness. It still scared the bejeebers out of me.

I have been wondering about the Harmons as well. I hope all is ok and you and the Kilners are still in our prayers.

Hugs, Robyn Johnston ========================================================================= Date: Tue, 14 Apr 1998 21:00:48 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: GSieb91515 <GSieb91515@AOL.COM> Subject: Re: hands Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Jenn,

Jonathan's bones are fused from the tips to about half way down. Our first surgeon was very noncommital also. He said that he wasn't sure if he could get all 4 fingers. Jonathan was born with his thumbs out. We changed surgeons (Dr. Shenaq @ Baylor) and he immediately said he could get 5 fingers and has not seen a hand yet that he couldn't get all the fingers released. We had seen his work first hand and were very impressed so we decided to go with him and have not regretted it at all. We still have 3 more surgeries to go on his hands but they look great. It is harder to see the bony fusion when they are younger and we didn't do Jonathan's first release until he was 10 months old. Hope this helps.

Brenda ========================================================================= Date: Tue, 14 Apr 1998 21:16:39 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Thornq <Thornq@AOL.COM> Subject: Re: any news on BJ? Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Denise,

I haven't heard from Marjorie in a long time, but she occassionally sends me personal mesages, so I will let everyone know the next time I talk with her.

As for the plates in the head, my doctors told me not to worry, they are extremely strong and durable. They told me that if they weren't, they would have put Andrew in a bubble because it is true, kids this age go bump alot. But I do understand where you are coming from because my husband almost has a heartattack everytime Andrew falls or runs into something.

Good luck with everything.

Lynn Thornquist ========================================================================= Date: Tue, 14 Apr 1998 21:59:09 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Thornq <Thornq@AOL.COM> Subject: Re: Jordans surgeries Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

Jenn,

I'm so glad to hear that Jordon is doing well. It is just as well that the vent is still in because you don't want them to pull it too early. When they start hearing breaths pass the tube, they will remove it. Just to let you know, Jordon is not the only "hard stick" (as they put it). They tried to stick Andrew the first surgery and finally they actually had to cut into his wrist to get the arterial line. He is a little chunky as well. I also cried that first night. I remember, I thought that no more tears could fall and they still kept coming. But it is over and now you can somewhat get back to normal. Congratulations on getting through it and our prayers are with you.

Love to all, Lynn ========================================================================= Date: Tue, 14 Apr 1998 21:59:09 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Thornq <Thornq@AOL.COM> Subject: Wrong about the Book. Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit

This is a message to everyone:

Unfortunately, I have to admit that I believe that Don Sears is right. Also Dr. Upton has his head you know where. When he told me that he bought 20 books and handed them out to his patients, he was talking 4 years ago he bought them. I was under the impression that he got them more recently than that. Which brings me to my upsetting news to everyone out there. I am unable to get my hands on the "actual book". Dr. Upton did give me his book to make copies. So I am offering my services to get anyone who wants a duplicated copy of the book, I will get it for them. But there is a catch. In order to have the copy done well, it will be $22.00 to have it copied.

So I am now compiling a new list of people who would like a copy. So if you are one of those people, please mail the copying charges and enclose your address. And if it possible, I would like those same people to e-mail me and let me know ahead of time, so I can let the copying place know about how many they will be making.

I am sorry for the misleading information and I know that alot of you got real excited, and I wish I didn't have to let you down, but I have no other choice in the matter. I will continue to keep searching, but I have tried many medical libraries, the publishers representatives and many others. I am going to call W.B. Saunders and see if they would reprint if the actual editor asked them to and if we have enough people who want it. Just to let you know, inside the book it states that the book costs $125.00 each copy. I don't know about the rest of you, but that's alot of money for us.

Sorry again, and let me know how many copies.

Lynn Thornquist ========================================================================= Date: Tue, 14 Apr 1998 23:51:08 -0300 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Gabriel Dantur <gdantur@IMPSAT1.COM.AR> Subject: Scottish Ritte Medical Center MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit

Hi everybody,

We have decided to travel to the states on an "exploratory" trip in order to decide which medical team to use. We will be getting there on the 26th of April and staying for one week in order to visit 3 teams.

I work for Kimberly Clark in Argentina and the medical office of KC in the US is helping me a lot. The central office is in Atlanta and they have recommended me to visit Dr. Fernando Burstein in Scottish Rite Medical center. I spoke with him on the phone and he sounded great. Nevertheless I've never heard of him in the listserver.

Does anybody in the family use him or the mentioned medical center ?? Any information about will be warmly welcomed.

Once again inmense thanks for everyone.

The Dantur's