========================================================================= Date: Mon, 8 Jun 1998 20:51:38 -0400 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jack and Raquel <jara1@BELLSOUTH.NET> Subject: Nicole's Surgery MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Hi everyone,
We just got back from Nicole's pediatrician and it looks like its a go for Thursdays surgery. She had blood work and pre-op stuff done today to get ready for surgery. I know the hospital will do their own once we arrive Thursday morning. Her cold has cleared up thank God and she is doing much better. So now the gitters begin. Since the surgery was cancelled last month due to a cold we had to get ourselves geared up for another 6 week wait and it looks like it's finally here. I know once we get over this hurdle (1st surgery and a biggie at that) we will be better for the surgeries to come. For some reason I don't think the hand surgeries are going to make me quite as nervous, or will they?
Well from Thursday on Miami Childrens Hospital will be our home away from home. Hopefully when Jack comes home to get cleaned up or something I'll have him send out a quick e-mail to let you all know how Nicole's surgery went. Please pray for us....
I hope everyone is doing fine and all of the kiddos are recooperating nicely from their surgeries.
Talk later
Raquel Miller.... ========================================================================= Date: Mon, 8 Jun 1998 20:59:01 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Patricia Smith <Patbrat718@AOL.COM> Subject: Bad hair daze.... Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Would any of you know of a real good shampoo for an excessively oily head? Jasmyn is having a heck of a time, we wash her hair every night and still it is oily again by dinner time the next day. We will be seeing the dermatologist next month, but hoped maybe someone had been there, done that.
Thanks, Patti ========================================================================= Date: Mon, 8 Jun 1998 21:24:19 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: "<George Siebert>" <GSieb91515@AOL.COM> Subject: Re: Nicole's Surgery Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Raquel--
We will be thinking of you as you prepare for Nicole's surgery. I know what a nerve wracking time this is for all of you. Every surgery is a tough one but I think when the kiddo's are under longer for cranial and midface surgeries it is a little scarier (is that a word?). I know for us the cranial surgeries and recovery seem to be a lot more emotional. We wish you all the best and will have you all in our prayers for a safe surgery and recovery. Please update us when you can.
Good luck
Brenda ========================================================================= Date: Mon, 8 Jun 1998 22:48:52 -0600 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: baconsmith <bluenose@TELUSPLANET.NET> Subject: Re: Nicole's Surgery Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
Dear Raquel, just wanted to wish you and Nicole and her daddy all the best for this surgery. It IS hard, but it'll be okay. Breathe deeply.
We'll be thinking of you on Thursday from Vancouver. Pat and EvaJessie email to: bluenose@telusplanet.net IM: onlypeach shake and shake the ketchup bottle. none will come and then a lot'll ... unknown ========================================================================= Date: Tue, 9 Jun 1998 06:32:21 -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: Bob Horning <Bob.Horning@CORP.HONEYWELL.COM> Subject: Krista's surgery/bad hair
Krista came through pretty well on her latest surgery. She had her nose rebuilt along with the bone behind her nose (it had disintegrated) and a few other touch ups. He also pulled the outside corners of her eyes up just a little to help tears drain toward the tear ducts. We'll see how that works. She had lot's of swelling the first few days back, but is now doing pretty well.
Regarding oily hair, Krista has always had the same problem. It gets greasy pretty fast. So far we haven't found any magic shampoos. The problem isn't with the shampoo, it's just that her skin secretes a lot of oil. We have found a few things that help some. When Krista came home from surgery, there was a ton of bacitracin ointment in her hair (the incision was across the top of her head). We stopped at a hair place and they gave us a shampoo that does OK, but still doesn't get it all (that stuff is awful). Based on past experience it'll take a few weeks to get all the ointment out. I'll call home and find out the name of the shampoo.
A. Don't use a conditioner or conditioning shampoo. That just adds oil or wax (or something that feels/looks like it) to the hair.
B. Don't use a moisturizing shampoo. They don't take grease out as well, according to a lady at the hair place.
C. We have used a shampoo called Tea Tree - I think the brand is John Paul Mitchell or something like that. It seems a little pricey, but seems to have helped some.
Bob Horning ========================================================================= Date: Tue, 9 Jun 1998 07:32:45 -0400 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Mark Smith <dsprado@PENN.COM> Subject: Pictures MIME-Version: 1.0 Content-Type: text/plain; charset="iso-8859-1" Content-Transfer-Encoding: 7bit
Hello,
For any one who didn't receive Kayla picture a week ago should be receiving them soon. I mailed out the rest yesterday. I hope you enjoy her picture as has much as I do. If there is someone I missed or you didn't get one, for things get lost in the mail let me know . I will be more than happy to send one to you. You can email me at mlsmith@penn.com.
Have a good day.
Michele ========================================================================= Date: Tue, 9 Jun 1998 06:50:03 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Bob Horning <Bob.Horning@CORP.HONEYWELL.COM> Subject: Orthotics
From: Horning Bob on Tue, Jun 9, 1998 6:52 AM Subject: Orthotics To: Apert Listserver
This has probably come up in the past, but I'll ask again.
Has anyone had any good luck with orthotics? Krista had "UCB" orthotics for quite a few years but they didn't appear to be doing anything for her. For the last couple years she hasn't had any, but we decided to try again just recently with a newer kind. I can't remember the name of them - perhaps something like "SMR?" They are a fairly stiff/slightly flexible plastic shell with shaped padding in strategic spots. They extend up around her ankle instead of just under her foot like the UCBs. Anyway, these new ones seem to hurt a LOT, and that doesn't seem good.
Has anyone else found orthotics that are any good?
Bob Horning ========================================================================= Date: Tue, 9 Jun 1998 07:50:26 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: Jennifer Graham <Jenngram@AOL.COM> Subject: Re: Nicole's Surgery Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Best of luck on Thursday, we'll definitly be thinking of you...as we have during the pre- surgery anxiety period. This is the big hurdle..and the hand surgeries may make you nervous..as they did me..just b/c its a surgery. I was told once that w/ each surgery it gets easier...and I think I am finding that to be very true. Concentrate on this one though...I promise you'll be suprised how quickly Nicole recovers.
AND....Jordan has FINALLY slept 3 nights in a row!!!!!!!! Lets hope we're back to our old selves...gee..it only took a month!!!!
Jenn(Tampa/St. Pete) ========================================================================= Date: Tue, 9 Jun 1998 07:49:18 -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: Bad hair daze....
The shampoo we got was called Bumble and Bumble. It's called a clarifying shampoo. We got it at a hair place - I doubt if you can find it at a regular store. I'm not convinced that it does any better than anything else would.
We also realized that washing Krista's hair at night was fruitless. She sweats so much at night that her hair is already oily by morning. We now give her a shower every morning, which makes a difference.
Bob
_______________________________________________________________________________ From: Patricia Smith on Mon, Jun 8, 1998 8:04 PM Subject: Bad hair daze.... To: Information exchange and Internet safe haven for Apert Syndrome
Would any of you know of a real good shampoo for an excessively oily head? Jasmyn is having a heck of a time, we wash her hair every night and still it is oily again by dinner time the next day. We will be seeing the dermatologist next month, but hoped maybe someone had been there, done that.
Thanks, Patti ========================================================================= Date: Tue, 9 Jun 1998 11:48:00 +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: Orthotics In-Reply-To: <02C44357D216B018*/c=US/admd=MCI/prmd=Honeywell/o=MN-MTA/ou=MSMac/ou=CORP/s=Horning/g=Bob/@MHS> MIME-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7BIT
APERT@LISTSERV.AOL.COM> From: Bob Horning <Bob.Horning@CORP.HONEYWELL.COM> Subject: Orthotics To: APERT@LISTSERV.AOL.COM
>Has anyone else found orthotics that are any good?
We aren't dealing with Apert here, but just about all of us have orthotics. With our insurance, custom made ones aren't any more expensive than commercially made ones (cheaper, in fact, because they pay 95%). You might want to see what your insurance will cover. We see a podiatrist, but he says that orthopedists and sports medicine specialists also make orthotics.
Judy ========================================================================= Date: Tue, 9 Jun 1998 11:25:55 -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: Orthotics
>From: Judy Gibson on Tue, Jun 9, 1998 10:57 AM
>With our insurance, custom made ones aren't any more >expensive than commercially made ones (cheaper, in fact, because they >pay 95%). You might want to see what your insurance will cover. We >see a podiatrist, but he says that orthopedists and sports medicine >specialists also make orthotics.
>Judy
Judy Cost isn't really an issue. Our insurance covers this stuff pretty well, too. Utility and pain are the issues. We dropped the UCBs because they didn't appear to be doing anything. There was no sense paying for the orthotics, getting them fitted to the foot and the shoe, etc. etc. etc. when they had no use. However, Krista's right ankle has always had a large bend in it, so we'd like to do something about it (preventative or repair) if there is something available.
Bob ========================================================================= Date: Tue, 9 Jun 1998 12:41:36 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jennifer Graham <Jenngram@AOL.COM> Subject: Re: Bad hair daze.... Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
We wash hairs morning and night, I don't know if this is wise or not, but it seems to help keep things looking tidy and nice. And just use a shampoo made for oily hair. I have oily skin, and was told the more I wash it the more oil it was producing..compensating I guess for being stripped of its "natural" moisture, so I was advised to just rinse my face with plain ole water once a day, and wash it w/ something mild once a day. I don't know if it applies to hair follicles..I'll pose the question to my dermotoligist and see what he says. it has definitly helped w/ the skin though!!!!
Jenn(Tampa/St. Pete) ========================================================================= Date: Tue, 9 Jun 1998 18:51:32 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: Gaylann Hicks <Gaylann1@AOL.COM> Subject: To Rachel Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Hi Rachael, I'm Gaylann Hicks and I live in Cordova. I've not been active on the Aperts listserv but was lurking and saw that you live in Memphis. Would love to know your story. I have a grandson, Blake Scofield, born with Crouzon syndrome. My daughter and her family live in Collierville. For Blake's story and viewing photos of my lovely family you can go to the Crouzons webpage. www.Crouzon.org/ ========================================================================= Date: Tue, 9 Jun 1998 16:15:00 -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: "Pulido, Laura" <PulidoL@OR.CSMC.EDU> Subject: Picture Exchange MIME-Version: 1.0 Content-Type: text/plain
Hello everyone!
I finally mailed out all of Martha's pictures. Hope everyone gets one. I ended up with about 50 or 51 names. There was a few that were added toward the end that I don't have. If anyone has a more complete list - Would appreciate a copy. Thanks!
Laura Pulido Los Angeles, California ========================================================================= Date: Tue, 9 Jun 1998 20:30:21 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Beth Tolson <ETolson643@AOL.COM> Subject: Re: Bad hair daze.... Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Hello to all Tim has also always had a problem with greasy hair. My pediatrician says that the wax-like substance on his scalp is psoriasis. He recommended taking mineral oil and combing it through his hair at night and removing the wax substance; and then washing his hair in the morning... yes, that means leaving a coating of the mineral oil in the hair overnight. It sounds disgusting, but it works! We use a shampoo with coal tar (Sebulex?). We periodically do the mineral oil routine and it keeps the grease down to a minimum. The coal tar shampoo is a daily or twice-daily routine. Now that Tim is sixteen, he has a shower every morning and often another at night. Hygience is an ongoing project for Tim! We are pretty aggressive in helping him see what he must do and how to best do it! Beth ========================================================================= Date: Tue, 9 Jun 1998 21:04:47 -0400 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: ROBIN L HILL <CARMENRAE@PRODIGY.NET> Subject: Re: Nicole's Surgery MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit
Good luck to Nicole. We will be thinking of her. Please keep Carmen Rae in your thoughts and prayers, also. She goes Friday for the same surgery as Nicole. I know it doesn't help, but we're going through the same pre-surgery gitters.
The Hills (Mike, Robin, and Carmen Rae) Newnan, Georgia
---------- > From: Jack and Raquel <jara1@BELLSOUTH.NET> > To: APERT@LISTSERV.AOL.COM > Subject: Nicole's Surgery > Date: Monday, June 08, 1998 8:51 PM > > Hi everyone, > > We just got back from Nicole's pediatrician and it looks like its a go > for Thursdays surgery. She had blood work and pre-op stuff done today > to get ready for surgery. I know the hospital will do their own once we > arrive Thursday morning. Her cold has cleared up thank God and she is > doing much better. So now the gitters begin. Since the surgery was > cancelled last month due to a cold we had to get ourselves geared up for > another 6 week wait and it looks like it's finally here. I know once we > get over this hurdle (1st surgery and a biggie at that) we will be > better for the surgeries to come. For some reason I don't think the > hand surgeries are going to make me quite as nervous, or will they? > > Well from Thursday on Miami Childrens Hospital will be our home away > from home. Hopefully when Jack comes home to get cleaned up or > something I'll have him send out a quick e-mail to let you all know how > Nicole's surgery went. Please pray for us.... > > I hope everyone is doing fine and all of the kiddos are recooperating > nicely from their surgeries. > > Talk later > > Raquel Miller.... ========================================================================= Date: Tue, 9 Jun 1998 21:13:50 -0400 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jack and Raquel <jara1@BELLSOUTH.NET> Subject: hair MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Patti,
Nicole only experienced the "greasies" for the first three months of her life. She is now eight months old and it no longer happens, not to say that it won't start up agian.
However, we heard that you could use any dandruff shampoo to help control the excess greasies but to be careful with the eyes (not tearless). We were told this by one of Nicki's doctors, but don't ask me which one (I can't remember).!!
It's worth a try.
Jack Miller ========================================================================= Date: Tue, 9 Jun 1998 21:34:26 -0400 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jack and Raquel <jara1@BELLSOUTH.NET> Subject: Carmen Rae MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Robin,
Just to let you know that our thoughts and prayers will be with you also. Please keep us posted after the surgery and we will do the same.
Jack Miller ========================================================================= Date: Tue, 9 Jun 1998 21:59:50 -0400 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: foster <foster@ICONTECH.COM> Subject: Surgeries Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
Wanted to send our prayers and best wishes to Carmen Rae and Nicole on their upcoming surgeries. I know how anxious you guys must feel and having been there I completely understand. Just try to relax and remember that we are all here for you and god is watching over you all. For us every surgery is the same because it is never easy to see your child go through anything that causes them pain. But, after every surgery at least you are a step closer to having them all over. Anyway we will be thinking of the Miller family on Thursday and the Hills on Friday.
We received Jacob Jones picture today and it was so funny. So glad he chose the chips instead of the dog food. Hope all is well with everyone else and everyone who has had any surgeries or illnesses are healing with great speed.
Our little guy has started walking along the furniture and has found out that he can still get his toes to his mouth even if he hands are unavailable. His fingers are healing very well and we only take him once a week to be checked,other than that we are doing the bandage changes. It so far so good because he can bend both fingers even though he does not like to.
Bye for now KAREN (PA) ========================================================================= Date: Tue, 9 Jun 1998 22:01:47 -0700 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: lisa mcgahan <wmcgahan@IX.NETCOM.COM> Subject: nicole and carmen rae MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit
Racquel and Robin-
We will be thinking and praying for both of your angels!!!!!!!!!!!! Lisa McGahan ========================================================================= Date: Tue, 9 Jun 1998 22:19:16 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: Jenny Brown <Firefli007@AOL.COM> Subject: message from hot & huimd savannah - jenny Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Good Luck to all having surgeries... I'll be back in a couple of weeks... Here's to Life and God's presents in our lives (hehe) Jenny L I F E
Don't undermine your worth by comparing yourself with others. It is because we are different that each of us is special.
Don't set your goals by what other people deem important. Only you know what is best for you.
Don't take for granted the things closest to your heart. Cling to them as they would your life, for without them, life is meaningless.
Don't let your life slip through your fingers by living in the past or for the future. By living your life one day at a time, you live all the days of your life.
Don't give up when you still have something to give. Nothing is really over until the moment you stop trying.
Don't be afraid to admit that you are less than perfect. It is this fragile thread that binds us each together.
Don't be afraid to encounter risks. It is by taking chances that we learn how to be brave.
Don't shut love out of your life by saying it's impossible to find.
The quickest way to receive love is to give; The fastest way to lose love is to hold it too tightly; And the best way to keep love is to give it wings.
Don't dismiss your dreams. To be without dream is to be without hope; To be without hope is to be without purpose.
Don't run through life so fast that you forget.. Not only where you've been, but also where you are going. Life is not a race, but a journey to be savored each step of the way.
Yesterday is History Tomorrow is a Mystery And Today Today is a gift that's why we call it The Present
Author Unknown ========================================================================= Date: Tue, 9 Jun 1998 22:25:49 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "Allison's : GO USA, Inc" <gousa@KC.NET> Subject: FWD: LONG Inspiring Story In-Reply-To: <4cdeb2ce.357ded25@aol.com> Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
THE TINY FOOT Two years after I came to California, there came to my office one day a fragile young woman, expecting her first baby. Her history was not good from an emotional standpoint, though she came from a fine family. I built her up as well as I could and found her increasingly wholesome and interesting as time went on, partly because of the effort she was making to be calm and patient and to keep her emotional and nervous reactions under control. One month before her baby was due, her routine examination showed that her baby was in a breech position. As a rule, the baby's head is in the lower part of the uterus for months before delivery, not because it is heavier and "sinks" in the surrounding fluid, but simply because it fits more comfortably in that position. There is no routine "turning" of all babies at the seventh or eighth month, as is so generally supposed, but the occasional baby found in a breech position in the last month not infrequently changes to the normal vertex position with the head down by the time it is ready to be born, so that only about one baby in 25 is born in the breech position. This is fortunate, as the death rate of breech babies is comparatively high because of the difficulty in delivering the after-coming head, and the imperative need of delivering it rather quickly after the body is born. At that moment the cord becomes compressed between the baby's hard little head and the mother's bony pelvis. When no oxygen reaches the baby's bloodstream, it inevitably dies in a few short minutes. Everyone in the delivery room is tense, except the mother herself, in a breech delivery, especially if it is a first baby, when the difficulty is greater. The mother is usually quietly asleep or almost so. The case I was speaking of was a "complete" breech -- the baby's legs and feet being folded under it, tailor fashion -- in contrast to the "frank" breech, in which the thighs and legs are folded back on a baby's body like a jackknife, the little rear end backing its way into the world first of all. The hardest thing for the attending doctor to do with any breech delivery is to keep his hands away from it until the natural forces of expulsion have thoroughly dilated the firm maternal structures that delay its progress. I waited as patiently as I could, sending frequent messages to the excited family in the corridor outside. At last the time had come, and I gently drew down one little foot, I grasped the other, but for some reason I could not understand, it would not come down beside the first one. I pulled again, gently enough but with a little force, with light pressure on the abdomen from above by my assisting nurse, and the baby's body moved down just enough for me to see that it was a little girl -- and then, to my consternation, I saw that the other foot would never be beside the first one. The entire thigh from the hip to the knee was missing and that one foot never could each below the opposite knee. And a baby girl was to suffer this, a curious defect that I had never seen before, nor have I since! There followed the hardest struggle I have ever had with myself. I knew what a dreadful effect it would have upon the unstable nervous system of the mother. I felt sure that the family would almost certainly impoverish itself in taking the child to every famous orthopedist in the world whose achievements might offer a ray of hope. Most of all, I saw this little girl sitting sadly by herself while other girls laughed and danced and ran and played -- and then I suddenly realized that there was something that would save every pang but once, and that once thing was in my power. One breech baby in 10 dies in delivery because it is not delivered rapidly enough, and now -- if only I did not hurry! If I could slow my hand, if I could make myself delay those few short moments. It would not be an easy delivery, anyway. No one in all this world would ever know. The mother, after the first shock of grief, would probably be glad she had lost a child so sadly handicapped. In a year or two she would try again and this tragic fate would never be repeated. "Don't bring this suffering upon them," the small voice within me said. "This baby has never taken a breath -- don't let her ever take one. You probably can't get it out in time, anyway. Don't hurry. Don't be a fool and bring this terrible thing upon them. Suppose your conscience does hurt a little; can't you stand it better than they can? Maybe your conscience will hurt worse if you do get it out in time." I motioned to the nurse for the warm sterile towel that is always ready for me in a breech delivery to wrap around the baby's body so that stimulation of the cold air of the outside world may not induce a sudden expansion of the baby's chest, causing the aspiration of fluid or mucus that might bring death. But this time the towel was only to conceal from the attending nurses that which my eyes alone had seen. With the touch of that pitiful little foot in my hand, a pang of sorrow for the baby's future swept through me, and my decision was made. I glanced at the clock. Three of the allotted seven or eight minutes had already gone. Every eye in the room was upon me and I could feel the tension in their eagerness to do instantly what I asked, totally unaware of what I was feeling. I hoped they could not possibly detect the tension of my own struggle at that moment. These nurses had seen me deliver dozens of breech babies successfully-yes, and they had seen me fail too. Now they were going to see me fail again. For the first time in my medical life I was deliberately discarding what I had been taught was right for something that I felt sure was better. I slipped my hand beneath the towel to feel the pulsation's of the baby's cord, a certain index of its condition. Two or three minutes more would be enough. So that I might seem to be doing something, I drew the baby down a little lower to "split out" the arms, the usual next step, and as I did so the little pink foot on the good side bobbed out from its protecting towel and pressed firmly against my slowly moving hand, the hand into whose keeping the safety of the mother and the baby had been entrusted. There was a sudden convulsive movement of the baby's body, an actual feeling of strength and life and vigor. It was too much. I couldn't do it. I delivered the baby with her pitiful little leg. I told the family the next day, and with a catch in my voice, I told the mother. Every foreboding came true. The mother was in a hospital for months. I saw her once or twice and she looked like a wraith of her former self. I heard of them indirectly from time to time. They had been to Rochester, Minn. They had been to Chicago and to Boston. Finally I lost track of them altogether. As the years went on, I blamed myself bitterly for not having had the strength to yield to my temptation. Through the many years that I have been there, there has developed in our hospital a pretty custom of staging an elaborate Christmas party each year for the employees, the nurses and the doctors of the staff. There is always a beautifully decorated tree on the stage of our little auditorium. The girls spend weeks in preparation. We have so many difficult things to do during the year, so much discipline and so many of the stern realities of life, that we have set aside this one day to touch upon the emotional and spiritual side. It is almost like going to an impressive church service, as each year we dedicate ourselves anew to the year ahead. This past year the arrangement was somewhat changed. The tree, on one side of the stage, had been sprayed with sliver paint and was hung with scores of gleaming silver and tinsel ornaments, without a trace of Colour anywhere and with no lights hung upon the tree itself. It shone but faintly in the dimly lighted auditorium. Every doctor of the staff who could possibly be there was in his seat. The first rows were reserved for the nurses and the moment the procession entered, each girl in uniform, each one crowned by her nurse's cap, her badge of office. Around their shoulders were their blue Red Cross capes, one end tossed back to show the deep red lining. We rose as one man to do them honor, and as the last one reached her seat, and we settled in our places again, the organ began the opening notes of one of the oldest of our carols. Slowly down the middle aisle, marching from the back of the auditorium, came 20 other girls singing softly, our own nurses, in full uniform, each holding high a lighted candle, while through the auditorium floated the familiar strains of "Silent Night." We were on our feet again instantly. I could have killed anyone who spoke to me then, because I couldn't have answered, and by the time they reached their seats I couldn't see. And then a great blue floodlight at the back was turned on very slowly, gradually covering the tree with increasing splendor: brighter and brighter, until every ornament was almost a flame. On the opposite side of the stage a curtain was slowly drawn, and we saw three lovely young musicians, all in shimmering white evening gowns. They played very softly in unison with the organ -- a harp, a cello and a violin. I am quite sure I was not the only old sissy there whose eyes were filled with tears. I have always like the harp, and I love to watch the grace of a skillful player. I was especially fascinated by this young harpist. She played extraordinarily well, as if she loved it. Her slender fingers flickered across the strings, and as the nurses sang, her face, made beautiful by a mass of auburn hair, was upturned as if the world that moment were a wonderful and holy place. I waited, when the short program was over, to congratulate the chief nurse on the unusual effects she had arranged. And as I sat alone, there came running down the aisle a woman whom I did not know. She came to me with arms outstretched. "Oh, you saw her," she cried. "You must have recognized your baby. That was my daughter who played the harp -- and I saw you watching her. Don't you remember the little girl who was born with only one good leg 17 years ago? We tried everything else first, but now she has a whole artificial leg on that side -- but you would never know it, would you? She can walk, she can swim, and she can almost dance. "But, best of all, through all those years when she couldn't do those things, she learned to use her hands so wonderfully. She is going to be one of the world's great harpists. She is my whole life, and now she is so happy? And here she is!" As we spoke, this sweet young girl had quietly approached us, her eyes glowing, and now she stood beside me. "This is your first doctor, my dear -- our doctor," her mother said. Her voice trembled. I could see her literally swept back, as I was, through all the years of heartache to the day when I told her what she had to face. "He was the first one to tell me about you. He brought you to me." Impulsively I took the child in my arms. Across her warm young shoulder I saw the creeping clock of the delivery room 17 years before. I lived again those awful moments when her life was in my hand, when I had decided on deliberate infanticide. I held her away from me and looked at her. "You never will know, my dear," I said, "you never will know, nor will anyone else in all the world, just what tonight has meant to me. Go back to your harp for a moment, please -- and play "Silent Night" for me alone. I have a load on my shoulders that no one has ever seen, a load that only you can take away." Her mother sat beside me and quietly took my hand as her daughter played. Perhaps she knew what was in my mind. And as the last strains of "Silent Night, Holy Night" faded again, I think I found the answer, and the comfort, I had waited for so long." By DR Loomis [An article from "Celebration of LIFE," a newsletter on life issues] Thoughts: This is a beautiful story for several reasons. For one, there are lessons in it which we could all share. One of the first that came to my mind is that we should remember to have faith & do our duty. The rest is up to God.] ========================================================================= Date: Tue, 9 Jun 1998 23:33:43 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: "Christina R. Mathis" <ChMathis@AOL.COM> Subject: Another surgery! Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Hello everyone, Zoey and Tia's Mom here: I just wanted to apoligize for just lurking about lately. Just been in a "blah" mood. Also, I wanted to let everyone know that Zoey's next hand surgery will tentatively be for July 28th. And, I took her to the Opthamologist today and she said that Zoey is far-sighted and needs glasses. Very depressing, but will get over it soon. She also said that it was rare for an Apert child to be far-sighted and that she thinks it is completely unrelated. If she wears glasses know, she maybe glasses free when she's older. To everyone having surgeries, you will be in our prayers. Take care.
Christina ========================================================================= Date: Wed, 10 Jun 1998 07:22:43 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: Ted Finch & Jeanne McDermott <TFinch10@AOL.COM> Subject: Re: tiny foot story Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Dear List, Who posted the tiny foot story? Could you send me the name of the newsletter that carried it? The tiny foot story is very dear to my heart because it is about my grandmother and aunt. It was originally published as a drama in real life in Reader's Digest in the l950s. My grandmother's OB Dr. Loomis wrote the story many years after my aunt's birth and changed many details about the family to heighten the drama but the crux of his dilemna was true to the experience. At any rate, my grandmother (now dead) would have been so happy to know that others benefitted from this story. As a new mother of a baby with a "handicap" in the l920s, she felt very isolated. Jeanne in Boston ========================================================================= Date: Wed, 10 Jun 1998 07:53:41 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jennifer Graham <Jenngram@AOL.COM> Subject: Re: Nicole's Surgery Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Good luck to Carmen Rae on Friday...we'll say our prayers for ya'll as well. I know ya'll too will be glad when this one is over with. Best of Luck!!!!
Jenn(Tampa/St. Pete) ========================================================================= Date: Wed, 10 Jun 1998 07:58:49 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jennifer Graham <Jenngram@AOL.COM> Subject: Re: Jacobs pic Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
What a cutie littel Jacob Jones is...If only you could have sen the fear in Joes eyes when he saw the chips all over the floor. His future flashed before his eyes...I keep telling him that, yes..Jordan will become even less tidy than he is now. Guess it took seeing to believe!!!!
The past few weeks we have received tons of photos, andI have been quite lax in commenting on them all, but each and every one is gourgeous and holds a special place in our hearts. The photo album is on our coffee table for all to admire these beautiful children. Hope thats ok w/ everyone...I figures as parents we show our kids off to everyone, so whats a few more peoples admiration!!!!
Jenn(Tampa/St. Pete) ========================================================================= Date: Wed, 10 Jun 1998 08:02:57 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jennifer Graham <Jenngram@AOL.COM> Subject: Re: Surgeries Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
well, as Jordan is recovering well...he is anti-hand man. He is NOT so keen on using his new pinky and thumb. The bath is the only time we get his to really cooperate w/ us on using things. Hmmmm......any advice or is this just a time issue? I imagine he'll have no choice once we go in to do the other hand..plus its still healing, so maybe its feeling odd. Who knows!!!!! BUT....we got another night of sleep....yeah!!!!!!! Better than marriage counseling!!!!! Everyones nerves are back on an even keel !!!!!!
Jenn(Tampa/St. pete) ========================================================================= Date: Wed, 10 Jun 1998 08:14:15 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jennifer Graham <Jenngram@AOL.COM> Subject: Re: tiny foot story Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Jeanne,
I think the Tiny Foot story cam form The Allisons in Kansas City, MO...I will chack, but I think I have read it in one of the "Focus on the Family" (done by Dr. James Dobson) newsletters. I'll go through some files and see what I can find and let ya know. I can't believe its about your grandmother and aunt!!!!! What a great story.
Jenn(Tampa/St. Pete) ========================================================================= Date: Wed, 10 Jun 1998 09:16:19 -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: Hello Comments: To: =?iso-8859-1?Q?=27Helin=E4__M=E4kil=E4=27?= <helina.makila@pp.inet.fi> MIME-Version: 1.0 Content-Type: text/plain; charset="iso-8859-1" Content-Transfer-Encoding: 8bit
> -----Original Message----- > From: Helinä Mäkilä [SMTP:helina.makila@pp.inet.fi] > Sent: Wednesday, May 13, 1998 2:21 PM > To: catndon@apert.org > Subject: Hello > > My sister has Apert syndrome. She is 35 years old and lives in > Finland. > > When she was little she looked just like Teeter. Now she is adult and > lives > in grouphome with other handicaps.Her name is Maarit and she can read > and > write and can live by hershelf with a little help. My parents don`t > live > anymore. > > It was very interesting to visit on your homesite. I am a dentist and > searched information about this syndrome and especially dental and > face > defects. > > In Finland there is only about 10 cases of Apert syndrome-I don´t no > exactly the amount but I can find out later, if you are interested. > > I´d love to hear more about you via internet. > =================================================== > H E L I N Ä M Ä K I L Ä > > Märssykaari 6B > 18300 Heinola > Finland > helina.makila@pp.inet.fi > =================================================== > > > > ========================================================================= Date: Wed, 10 Jun 1998 09:47:26 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: Patricia Smith <Patbrat718@AOL.COM> Subject: Bad hair daze.... Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Thanks all for the great info on the oily head.....we are going to start experimenting with your suggestions today.....100 heads are better than one!
Patti ========================================================================= Date: Wed, 10 Jun 1998 10:05:54 -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: FW: Mathaus schmidt MIME-Version: 1.0 Content-Type: text/plain
Can some of our Spanish speaking family reply to Uwe? Thank you!! --don
> -----Original Message----- > From: Uwe Heinz Schmidt [SMTP:heinz@nts.com.br] > Sent: Sunday, May 17, 1998 9:51 AM > To: CatNDon@apert.org; don@nts.com.br; sears@nts.com.br > Subject: Mathaus schmidt > > Nosso filho tem a sindrome de apert, como entrar em contato com o > Senhor > > uwe heinz schmidt ========================================================================= Date: Wed, 10 Jun 1998 11:18:00 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: Claudia Mastellone <JReyesmich@AOL.COM> Subject: Re: FW: Mathaus schmidt Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
I think that is portuguese- it's not spanish-sorry!! Claudia ========================================================================= Date: Wed, 10 Jun 1998 09:00:07 -0700 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "Pulido, Laura" <PulidoL@OR.CSMC.EDU> Subject: Re: Mathaus schmidt MIME-Version: 1.0 Content-Type: text/plain
Don - This is not Spanish. Perhaps its Portugese - Claudia Ize may be of help. Laura
> ---------- > From: Don Sears[SMTP:dsears@SCRS.STATE.SC.US] > Reply To: Information exchange and Internet safe haven for Apert > Syndrome and other craniofacial anomalies > Sent: Wednesday, June 10, 1998 7:05 AM > To: APERT@LISTSERV.AOL.COM > Subject: FW: Mathaus schmidt > > Can some of our Spanish speaking family reply to Uwe? Thank you!! > --don > > > -----Original Message----- > > From: Uwe Heinz Schmidt [SMTP:heinz@nts.com.br] > > Sent: Sunday, May 17, 1998 9:51 AM > > To: CatNDon@apert.org; don@nts.com.br; sears@nts.com.br > > Subject: Mathaus schmidt > > > > Nosso filho tem a sindrome de apert, como entrar em contato com o > > Senhor > > > > uwe heinz schmidt > ========================================================================= Date: Wed, 10 Jun 1998 12:08:19 -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: FW: Mathaus schmidt MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Hi Don,
They are asking how can they contact you. I've already wrote to them. Thanks, The Ize's from Oklahoma.
Don Sears wrote: > > Can some of our Spanish speaking family reply to Uwe? Thank you!! --don > > > -----Original Message----- > > From: Uwe Heinz Schmidt [SMTP:heinz@nts.com.br] > > Sent: Sunday, May 17, 1998 9:51 AM > > To: CatNDon@apert.org; don@nts.com.br; sears@nts.com.br > > Subject: Mathaus schmidt > > > > Nosso filho tem a sindrome de apert, como entrar em contato com o > > Senhor > > > > uwe heinz schmidt ========================================================================= Date: Wed, 10 Jun 1998 12:26:56 -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: Bad hair daze MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Hi Patti,
sorry but I can't help you about the hair issue. Felipe never had this problem, he has dry hair. We use baby shampoo since he was born. Hope you can solve this problem.
The Ize's from hot Oklahoma. ========================================================================= Date: Wed, 10 Jun 1998 14:32:29 -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: FW: Mathaus schmidt MIME-Version: 1.0 Content-Type: text/plain
Thank you!
> -----Original Message----- > From: Ize [SMTP:ize@TACOMA.CEATLABS.OKSTATE.EDU] > Sent: Wednesday, June 10, 1998 1:08 PM > To: APERT@LISTSERV.AOL.COM > Subject: Re: FW: Mathaus schmidt > > Hi Don, > > > They are asking how can they contact you. I've already wrote > to them. > Thanks, > The Ize's from Oklahoma. > > > Don Sears wrote: > > > > Can some of our Spanish speaking family reply to Uwe? Thank you!! > --don > > > > > -----Original Message----- > > > From: Uwe Heinz Schmidt [SMTP:heinz@nts.com.br] > > > Sent: Sunday, May 17, 1998 9:51 AM > > > To: CatNDon@apert.org; don@nts.com.br; sears@nts.com.br > > > Subject: Mathaus schmidt > > > > > > Nosso filho tem a sindrome de apert, como entrar em contato com o > > > Senhor > > > > > > uwe heinz schmidt ========================================================================= Date: Wed, 10 Jun 1998 19:28:01 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "<George Siebert>" <GSieb91515@AOL.COM> Subject: Re: Nicole's Surgery Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Robin and Mike-
Carmen Rae will definately be in our prayers along with Nicole. We wish you all well and please update us as you can.
The Sieberts ========================================================================= Date: Wed, 10 Jun 1998 21:34:39 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: Janine Krebs <Yonstein@AOL.COM> Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Hello Everyone:
First of all, I want to wish Nicole and Carmen Rae (and their families) good luck with their surgeries. The cranial is very tough, but I was amazed how quickly Emily did recover from it. Don't be too shocked by the swelling, although I know you already know about that stuff. You'll all be in our prayers.
To Krista, glad to hear that you are recovering well from your surgery last week. Glad to hear Jordan and Billy are doing well also.
Emily is also recovering nicely and sleeping much better. Not bad for 2 and a half weeks post-op.
We are now in the process of looking into other doctors. We have found a hand surgeon in New York City supposed to be phenomenal so we have a consult set up and we have a consult set up with a cranio team out of NYU in Manhattan also. Dr. McCarthy, which I know some of you already know of him.
And the doctor visits go on and on and on and on and on...........
Do you ever get used to it?
Loved the tiny feet story. It does make you realize that these kids that are born "different" can overcome so much.
Hope all is well with everyone.
Janine
PS. Still running to the mailbox for the photos. If anyone did not receive Emily, please e-mail me at Yonstein@aol.com. Thanks. ========================================================================= Date: Thu, 11 Jun 1998 09:17:01 -0400 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: ROBIN L HILL <CARMENRAE@PRODIGY.NET> Subject: Carmen Rae... MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit
I just wanted to let everyone know that the last of Carmen Rae's pictures went out a couple of days ago. I think I sent a total of 51 or 52. If I missed someone, please let me know.
Thanks for all the well wishes for Carmen's surgery tomorrow. We appreciate your support and prayers. You all keep telling us we can do this and we believe you. Not because it really seems like we can, but we trust all of you since we know you have been right where we are. We will try to keep you posted on the outcome.
I received a book from a friend this week and I thought I would share it with you. It is called "Extraordinary Kids, nurturing and championing your child with special needs" by Cheri Fuller and Louise Tucker Jones. I have only read about 50 of its 300+ pages and it is GREAT!!!!! I would definitely recommend it to all of you. I am going to take it with me to the hospital and I feel a little bit of strength in knowing I will have it. It has the "Holland" story in it. One other story sticks in my mind. One of the authors tells of an article she read. It was about a business man who was blind. He was always referred to as "handicapped" so he decided to investigate the meaning of the word. The dictionary says a handicap is an added burden given to a SUPERIOR CONTENDER to equalize the contest. This hit home with me because I feel it defines our wonderful kids to a tee!!!!!!!!!!
Hope everything is well with everyone. I haven't mentioned the pictures lately but they are still coming and we are loving every one!!!
Take Care,
Robin Hill (looking forward to a couple weeks from now) ========================================================================= Date: Wed, 10 Jun 1998 21:32:41 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Elizabeth de Silva <lizsilva@SRV1.TELCONET.NET> Subject: Re: Nicole's Surgery MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Good luck to Carmen Rae and Nicole with their surgeries. We hope everything will come alright with them.
I have been out for a long time, so again I am updating myself with our families news.
I want to thank for the mailing list (for pictures) I have received. I do not if it is too late to get into it. Any way, my address is:
Elizabeth de Silva Av. Quito y P. Solano Edif. MAG, Piso 19 Guayaquil - Ecuador
I am sending pictures of Albita with her new fingers. I do not know how long it will take to arrive to your homes, but please let me know as soon as you get them. I hope you will enjoy them.
I have to say bye right now (boss just arrived).
Take care you all.
Love
Elizabeth ========================================================================= Date: Wed, 10 Jun 1998 21:43:57 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Elizabeth de Silva <lizsilva@SRV1.TELCONET.NET> Subject: Re: Surgeries MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Jenn, I am having the same problem with Albita. She is not cooperating any more trying to learn how to mover her fingers separately (she moves them as if they were still together, like one finger). I think she is scare (during healing period she has been having a very hard time, besides she hates to see blood and things like that), so we are not pushing her for a while, we think than as soon as she begins to play, draw, etc. she will begin to use her fingers and then we will be able to work with her. I just wanted to share this with you.
Good luck!!
Elizabeth
Jennifer Graham wrote:
> well, as Jordan is recovering well...he is anti-hand man. He is NOT so > keen on > using his new pinky and thumb. The bath is the only time we get his to > really > cooperate w/ us on using things. Hmmmm......any advice or is this just > a time > issue? I imagine he'll have no choice once we go in to do the other > hand..plus > its still healing, so maybe its feeling odd. Who knows!!!!! BUT....we > got > another night of sleep....yeah!!!!!!! Better than marriage > counseling!!!!! > Everyones nerves are back on an even keel !!!!!! > > Jenn(Tampa/St. pete) ========================================================================= Date: Thu, 11 Jun 1998 15:22:20 -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: Jim and Kelly Younkin <JimandKelly@YOUNKIN.COM> Subject: Using the "new" fingers MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit
Jenn- Hi from the Younkins! Glad to hear that Jordan's fingers are healing well, and that you're starting to get some sleep again! Sara didn't seem all that anxious to use her fingers either. Besides pain, our PT suggested that another reason she didn't want to use them was that everything felt "weird" to her after rearranging skin/skin grafts/nerves etc. I don't know--seemed to make sense at the time! Anyway, after the incisions had healed she suggested playing games with "gentle" sensory input for her fingers. Things like playing in pudding, cooked rice, jello. Then, working up to things like dry rice and sand (these were less fun 'cause they weren't lickable/edible and you couldn't turn you back for a second since they were-as our Katie says-choking things!) As her fingers really got stronger we moved to Play-doh for squeezing to build up the strength in those little hands even more (again, not quite as much fun, but somewhere there's a recipe for peanut butter homemade play-doh--which IS edible!) Hope some of this helps. We'll be thinking of all those with upcoming surgeries. Take care! Kelly ========================================================================= Date: Thu, 11 Jun 1998 15:37:50 -0400 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Don Sears <dsears@SCRS.STATE.SC.US> Subject: One more page is up! MIME-Version: 1.0 Content-Type: text/plain
Seth Jefferson's Page is up at http://www.apert.org/jefferson and as a link from Teeter's Page. Also corrected the link to Adrienne Rus's Page. ========================================================================= Date: Thu, 11 Jun 1998 15:50:32 -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: Nicole's Surgery MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Hi all...
Well we are home and guess what that means?? Yes, Nicole's surgery was cancelled AGAIN!!! Admitted, gown on and all, but her blood results reflected the white blood cells as being too high which means some form of infection and both Dr. Wolfe and Dr. Ragheb decided of course along with the Anestheologist Dr. Bower that it would be in the best interest of Nicoles health that they do not proceed. She is recovering from a cold that she had a couple of weeks ago, she has no fever and no symptoms of anything. So the only thing they could pin point at this time is her ears. They are both filled with fluid and according to the ENT doctor that was called in this morning they are a bit inflamed so he prescriped antibiotic drops to be administered to the ears and antibiotic by mouth. So hopefully in the next few days her blood count will go down to normal and we can proceed. The only thing that I asked the doctors is to please not to schedule it 5 or 6 weeks down the line because it will just give Nicki a chance to catch yet another cold which is what she seems to be doing on a monthly basis. Dr. Wolfe is going to try and see if they can schedule the surgery for next Thursday, but they have to make a few phone calls to move other surgeries that are scheduled for that day.
All I can say is that BOY ARE WE BECOMING A PAIR OF STRONG PARENTS.. I know that was is happening is Gods will because there are very many people praying for our Nicole and this is Gods way of answering our prayers, I guess she's not ready for that surgery yet and God is not ready for her to have it either. We've left everything in Gods hands and if its a go for next week then next week it will be. Please keep Nicole in your prayers and thank all of you for all the well wishes.
We do want to wish Carmem Rae amd her Mom & Dad the best for tomorrow and hope that they can be home soon with their little girl....
We will keep you posted....
Raquel Miller... ========================================================================= Date: Wed, 11 Jun 1997 17:02:24 -0700 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Longshot & Darwin <Longshot.Darwin@MCIONE.COM> Subject: Rachel's Story/Oily Hair/Thanks In-Reply-To: <79339bf5.357dbc75@aol.com> MIME-version: 1.0 Content-type: text/plain; charset=US-ASCII; X-MAPIextension=".TXT" Content-transfer-encoding: 7bit
Gaylann,
I am 24 and I have Apert's Syndrome. I am also married to a man who I thought I would never find named Chris. I also work as a Customer Service Representative, going on three years with my present company. When I was born, my brain didn't have enough room to grow so I had surgery on my skull. My hair was black, then they had to shave it and I couldn't believe it when it all came back blond. From the time I was born until the time I was 6, I had surgeries on my hands. They were webbed together. Only my pinkies were out. Through skin graphs the doctors made four fingers so I do have all five on each hand. My toes are still together except for my littlest. In January of 93 I had my first facial surgery. Went through 8 weeks of my mouth being wired shut after it. They made my eyes and nose smaller. My jaws were uneven, that's why the wiring. and what I call they made my face fuller in my cheeks. Had to go through a couple more surgeries to get the wires off and to finish my eyes. I don't want to scare anybody, but during all that it was the worst time in my life. But now 5 years later I would do it all again in a heartbeat. It has made me feel so much better about myself. People don't stare as much. I have a husband, which I really didn't think I had a chance to get. I do still have a few hang-ups about myself, but with the strength of God and my husband I will be alright. Just like I know everyone of your children will be. It may not seem like it now, especailly waiting for surgeries, but trust me it will be worth it. When I send my pictures out, I promise this weekend, I know I keep saying that but I really will, I will send a before and after picture.
About oily hair, I don't know how old to start but I keep perms in my hair and that cuts down alot on oily hair.
Brenda- Got tht cat- Thanks alot. I am grateful.
Good luck to those having surgries and welcome to to any new families.
Sorry to be so long.
Rachel longshot.darwin@mcione.com
God bless you all. ========================================================================= Date: Thu, 11 Jun 1998 20:33:42 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Janine Krebs <Yonstein@AOL.COM> Subject: Re: Nicole's Surgery Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Sorry to hear Nicole's surgery was cancelled, again. As you say, you have to believe there is a reason for it and it wasn't meant to be. Not that it makes it any easer for you guys at this moment. Getting geared up is probably the worst part. Hopefully whatever it is, her ears, she is feeling better.
Take care,
Janine ========================================================================= Date: Thu, 11 Jun 1998 21:32:02 -0700 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: lisa mcgahan <wmcgahan@IX.NETCOM.COM> Subject: switching drs. MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit
Janine- I was just curious why you are switching doctors. We too have met with Dr. McCarthy and Dr. Chiu (the hand dr. you referred to ?) as well as the Drs. from CHOP (Dr. Whittaker) and CHOB (Dr. Mulliken and Upton) if you want to ever talk with someone who has done a lot of due diligence on their differences.
I hope all is well with Emily. I am so glad she is back to sleeping through the night. Morgan is going to have a posterior relese done in the next couple of weeks (still undecided between NYU and CHOB) and her first hand surgery July 31., (in Boston with Dr. Upton). I am still finding it very hard to decide upon a craniofacial team because each Dr. has a different opinion on timing. Anyway, let me know if you ever want to talk.
Friends- Lisa ========================================================================= Date: Thu, 11 Jun 1998 21:32:23 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "<George Siebert>" <GSieb91515@AOL.COM> Subject: Re: Carmen Rae... Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Robin,
Thanks for the book info. We will definately look for this one. You are so right about the Superior Contenders. What a wonderful description. Good luck again. Lots of prayers coming your way.
The Sieberts ========================================================================= Date: Thu, 11 Jun 1998 21:37:42 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: "<George Siebert>" <GSieb91515@AOL.COM> Subject: Re: Nicole's Surgery Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Raquel,
I can't believe what you are going through. How frustrating, but you are right it isn't God's will to have surgery this week. We will keep you in our prayers that Nicole is better soon and that surgery can be rescheduled quickly.
We are still waiting to hear from our surgeon's office for a new surgery date for Jonathan. It doesn't look promising before Aug. 3. I hate having to wait that long and get psyched all over again. Yes, we are becoming very strong parents too. But like it's been said before, God won't give us anything we can't handle. A little trying at times but we carry on. Good luck.
Brenda ========================================================================= Date: Thu, 11 Jun 1998 21:37:19 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Frank & Annette Contrino <contrino@BUFFNET.NET> Subject: Re: Surgeries Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
>well, as Jordan is recovering well...he is anti-hand man. He is NOT so keen on >using his new pinky and thumb. The bath is the only time we get his to really >cooperate w/ us on using things. Hmmmm......any advice or is this just a time >issue?
Jordan is telling you exactly what to do! Our therapists, from the Hand Center of Western New York, told us that warm, soapy water was great for Nicole's hands after the surgeries. We used to fill the sink and let her stand on a chair and play in it for as long as we could tolerate the mess. She would get water all over herself and the kitchen, but she had a ball! We would put toys in the sink to keep her occupied. You can use anything that would hold warm soapy water and move the therapy to an outdoor setting to reduce the mess. Two of Nicole's surgeries were in the dead of winter here in Buffalo and frozen fingers wouldn't have helped much. :-) They said the water would soak off some of the dead skin that accumulated from the surgery and keep the scar tissue soft and pliable to reduce scaring and retain range of motion. The range of motion is because the skin tends to shrink as it scars but keeping it moist and soft would reduce the shrinkage. They also recommended lotion (once there's no open wounds) to keep the skin moist and soft. It also gets them used to using the fingers and they don't have a clue that it's really therapy. One of the other things a therapist told us to use once the hands were healed was Quaker Oats. You put them in a Tupperware bowl, or something similar, and let them play away. Another messing item, but they vacuum up easily. If they do decide to eat it, it's actually healthy and not a choking hazard unless he eats a lot. They also had us using dried beans (kidney, pinto, navy). These were mainly "textures" to get her hands used to different stuff. When you're done, you can have oatmeal for breakfast and a bean soup for dinner. Try it, it'll be fun if you can tolerate the mess.
Frank Contrino contrino@buffnet.net ========================================================================= Date: Fri, 12 Jun 1998 01:42:51 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: BO p 1912 <BOp1912@AOL.COM> Subject: Re: Hello Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Hello All My name is Beth I am 34 years old I am a nurse aide have been for 14 years I love what I do.. In my spare time I like to take pictures go for walks, and go dancing I would like to meet new people I live in Dubuque Iowa I drive a car looking to buy a 98 in july or Aug ... Write back thanks BOp1912 Beth ========================================================================= Date: Fri, 12 Jun 1998 08:52:24 -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: Christy Louden <clouden@CAMALOTT.COM> Subject: Great news! MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit
I have some great news! The family I lurk for, on this site, received a wonderful blessing yesterday. Lowe's Home Improvement in Abilene, Texas is doing a "Lowes Heroes" program where they picked one family from the community to assist in improving their living environment. They picked the family that I work with that has the son with Apert's (Tyler). I have told y'all before that they live in a very remote and rural area and it is hard for the mom to get a lot of information/support on Apert's. Well, I was telling them about how wonderful this support network is and how all of you write back and forth communicating about the pertinent issues in the daily lives of your children and each other, AND they decided to provide the family with a computer!!! They also assisted the family by making need repairs in the home in which they live. The computer will be delivered to the family on Saturday, but the family probably won't be "online" until sometime around June 22nd or 23rd. We know we can probably get juno e-mail, but are looking for inexpensive internet access. If you know of any, please let me know. I will be in Nantucket, MA next week but will see them again on June 22nd.
Also, we received local news coverage. The reported told a little about Aperts and the support group and showed an interview with the family. It was wonderful!!!--Truly an answer to prayers!
Have a wonderful weekend. You all are in my prayers!
Christy Louden clouden@camalott.com ========================================================================= Date: Fri, 12 Jun 1998 08:56:07 -1000 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "Joana H. Magno, M.D." <magnomd@ALOHA.NET> Subject: Pictures! MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
We sure have been having a great time putting together our picture book!
Some of the kids have their birthdays listed on their pictures but not all, and I was thinking that we should get a birthday list together so that those of us who would want to could do a birthday card exchange! Don't you think that it would be great for the kids to get birthday cards from all of their internet friends? I have my list of addresses on a mailing label program so I am sure that it would be an easy thing to sort people by birthdate!
Keep those letters and pictures coming, and for those of you who haven't gotten Mar Mar and Sarah's picture yet, I just got more reprints done so will get them out very soon!!
Joana Magno Honolulu ========================================================================= Date: Fri, 12 Jun 1998 09:03:44 -1000 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "Joana H. Magno, M.D." <magnomd@ALOHA.NET> Subject: Birthday List MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Margaret Hisako Iucker "Mar Mar" Birthdate: November 1, 1993 (It is Iucker with an " I ", and not a " T ") 811 Moaniala St. Honolulu, HI 96821 ========================================================================= Date: Fri, 12 Jun 1998 15:34:38 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "<George Siebert>" <GSieb91515@AOL.COM> Subject: Re: Hello Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Hello Beth,
Welcome to our family. It sounds like you keep very busy. Do you have Apert Syndrome? You have a wonderful career helping others. We look forward to hearing from you more.
The Sieberts Houston, TX ========================================================================= Date: Fri, 12 Jun 1998 15:37:21 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "<George Siebert>" <GSieb91515@AOL.COM> Subject: Re: Great news! Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Christy,
Your story brought tears to my eyes (joyful). It is always so uplifting to hear about people receiving help from local organizations. We hope to be talking to your friends very soon.
Brenda Houston
P.S. Nantucket is wonderful. Wish we were going there too. ========================================================================= Date: Fri, 12 Jun 1998 15:39:24 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: "<George Siebert>" <GSieb91515@AOL.COM> Subject: Re: Birthday List Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Birthday Card List continued:
Jonathan Siebert Birthdate: December 6, 1996
5226 Walnut Peak Ct. Kingwood, TX 77345 ========================================================================= Date: Fri, 12 Jun 1998 15:52:37 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: Jennifer Graham <Jenngram@AOL.COM> Subject: Re: Birthday List Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Jordan Graham...........9/18/96
6220 7th Ave North St. Petersburg, Fl 33710
A big welcome to our new members. This is a great place, I know you'll call it "home" just as we do!!!!
So sorry to hear little Nicoles surgery was cancelled AGAIN!!!!!! But...there must be a reason, so hang in there. Hopefully it will be rescheduled soon. Jonathons too...AUG 3?????!!!! WOW..busy place!!!!!
We just got a phone call from the surgical service regarding Jordans next one on June 26...I CAN NOT BELIEVE its time again. Hes nicely healed on his right hand and using it much more as its healed. It looks real good...esp. compared to the first bandage change...YUCK!!!!! OHHHHHH....and hes discovered BARNEY!!!!!!! Ohmigoodness are we in trouble now!!!
Thanks for all the words of wisdom about Jordans hands..looks like I am going to be gettin messy!!!!!! Oh well, it was bound to start!!!
Have a good weekend all
Jenn(Tampa/St. Pete...hot...very hot!!!!) ========================================================================= Date: Fri, 12 Jun 1998 15:57:33 -0400 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Rich Hartley <rhartley@DZIS.COM> Subject: Birthday List Mime-Version: 1.0 Content-type: text/plain; charset=us-ascii
Andrew Hartley Birthday 4/30/98
Rich & Karen Hartley 118 Hartranft Avenue East Norriton, PA 19401 ========================================================================= Date: Fri, 12 Jun 1998 16:09:55 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: Janine Krebs <Yonstein@AOL.COM> Subject: Re: Great news! Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Wow, that is great news. It's nice to hear of good things happening to people. Looking forward to hearing from them on the listserve.
Janine Krebs ========================================================================= Date: Fri, 12 Jun 1998 16:10:57 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Janine Krebs <Yonstein@AOL.COM> Subject: Re: Birthday List Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
EMILY KREBS July 26, 1997
Brian & Janine Krebs 187 Rhode Island Avenue Massapequa, New York 11758 ========================================================================= Date: Fri, 12 Jun 1998 16:47:16 -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: Another pretty page - Nicole Miller MIME-Version: 1.0 Content-Type: text/plain
Nicole's Page is up at http://www.apert.org/miller. Also, I've changed the layout of the 'friends' section of Teeter's Page - opinions, everyone?
We're off to Myrtle Beach in the morning to join Judy and Nick Amerman. If any of you are going to be nearby, we'll all be there through Wednesday...
I'll be in touch soon.
Much love to all of you in our dear extended family!
Don ========================================================================= Date: Fri, 12 Jun 1998 18:10:25 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: "Christina R. Mathis" <ChMathis@AOL.COM> Subject: Re: Birthday List Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Zoey Simone mathis Birthdate:January 18th, 1997
Christina Mathis 7735 Branston San Antonio, Tx 78250 ========================================================================= Date: Fri, 12 Jun 1998 20:59:19 -0400 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Mark Smith <dsprado@PENN.COM> Subject: re-birthday MIME-Version: 1.0 Content-Type: text/plain; charset="iso-8859-1" Content-Transfer-Encoding: 7bit
Hello
Kayla Smith DOB is 4-12-91
Michele ========================================================================= Date: Fri, 12 Jun 1998 20:06:25 -0600 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Chad & Denise Graham <cgraham@INFOAVE.NET> Subject: BIRTHDATE/SURGERY MIME-version: 1.0 Content-type: text/plain; charset="us-ascii"
Hello to everyone! Hope all surgeries are going well, and sorry to hear about Nicole's cancellation!
Daryl's Birthday is: Feb. 24, 1996
Chad, Denise, Nikita, & Daryl Graham 1030 Fairfield Pike Shelbyville, Tn 37160
We just found out today that Daryl is going to need a forehead and brow advancement. I wasn't expecting this so soon, but I knew it would be sometime. We scheduled it for November 5, 1998.
Talk to everyone soon! Has anyone heard from BJ?
Denise Graham ========================================================================= Date: Sat, 13 Jun 1998 14:14:27 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Patricia Smith <Patbrat718@AOL.COM> Subject: Birthday info Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Jasmyn Marie Smith Boczkowski
Born 6/29/88
Great idea! ========================================================================= Date: Sat, 13 Jun 1998 15:14:07 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Janine Krebs <Yonstein@AOL.COM> Subject: Magazine on Line Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
I came across this site and wanted to share it. It's a magazine on line for parents of kids with disabilities. It's www.specialchild.com.
Enjoy.
Hope all is well with everyone. Janine Krebs ========================================================================= Date: Sat, 13 Jun 1998 17:13:44 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: Andrea Gartner <LUVS2WRTE@AOL.COM> Subject: Birthday Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Hi everyone,
My (Andrea Gartner) b-date is 1-14-78. I've noticed that there are quit a few b-days during this time too. This is a great idea.
Hope everyone is doing well,
-Andrea ========================================================================= Date: Sat, 13 Jun 1998 20:09:27 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "<George Siebert>" <GSieb91515@AOL.COM> Subject: Re: BIRTHDATE/SURGERY Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Denise,
Sorry to hear Daryl is having another surgery. How long has it been since his cranial vault? We know we will need another F.A. too but are hoping we can make it a few more years.
Best wishes,
Brenda ========================================================================= Date: Sat, 13 Jun 1998 20:04:05 -0600 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Chad & Denise Graham <cgraham@INFOAVE.NET> Subject: surgery/christine MIME-version: 1.0 Content-type: text/plain; charset="us-ascii"
Brenda, When we have the surgery it will be a little over 2 years since we have had the total vault reconstruction. A lot of people think we are nuts doing this again, but they don't see the big picture. DAryl still looks great, but as mom I can tell that his orbits have not grown foward and the top of his head is at a point, but you can't tell because his hair is so thick. The reason we are doing it soon is we will get better results now rather than waiting a couple of years and it will cause his head to grow in a better fashion later. My thing is he is still young enough that he won't remember. Hope the family is doing well!
Has anyone heard how Christine Clark is doing? I have been thinking about her and what she is facing.
Hope everyone is doing good today! God Bless everyone!!
Denise Graham ========================================================================= Date: Sun, 14 Jun 1998 22:23:41 +1200 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Howard & Ann <howrdnan@IHUG.CO.NZ> Subject: Re: Surgeries Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
>Jordan is telling you exactly what to do! Our therapists, from the Hand >Center of Western New York, told us that warm, soapy water was great for >Nicole's hands after the surgeries.
Frank, were you given any recommendations on soaps? The skin on Amy's hands can quickly react to anything like those liquid soaps - whatever it is that makes them liquid does not suit her.
Ann NZ ========================================================================= Date: Sun, 14 Jun 1998 22:23:45 +1200 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Howard & Ann <howrdnan@IHUG.CO.NZ> Subject: Birthday List and TV programmes Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
I know we are a long way away, but if anyone wants to send a birthday card our way Amy loves getting them:
Amy Colleen Esler born 27 February 1991 6 Peter Mulgrew Street Avondale, Auckland 7 New Zealand
>and hes discovered >BARNEY!!!!!!! Ohmigoodness are we in trouble now!!!
If you think Barney is bad wait until you get Teletubbies!!!!!!!
Cheers Ann NZ ========================================================================= Date: Sun, 14 Jun 1998 22:23:47 +1200 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Howard & Ann <howrdnan@IHUG.CO.NZ> Subject: Re: surgery/christine Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
> When we have the surgery it will be a little over 2 years since we >have had the total vault reconstruction. A lot of people think we are nuts >doing this again, but they don't see the big picture.
Denise, Amy got hit in the eye with a tennisball on Friday. It appears no damage was done but it reminded me just how vulnerable our children's eyes are without the protection we take for granted.
Best wishes for the operation.
Ann NZ ========================================================================= Date: Sun, 14 Jun 1998 08:21:42 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jennifer Graham <Jenngram@AOL.COM> Subject: Re: BIRTHDATE Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
oops..I listed Jordan as being a year older
his DOB is actually 9-18-97...not 96'
Jenn(Tampa/St. Pete) ========================================================================= Date: Sun, 14 Jun 1998 09:48:59 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Tim Graves <timg@BELLSOUTH.NET> Organization: home Subject: birthdays MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Nicholas' birthday is nov. 26, 1991.... a thanksgiving day birthday this year....
nicholas graves 370 oakland rd madison, al 35758 ========================================================================= Date: Sun, 14 Jun 1998 12:11:34 -0400 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: ROBIN L HILL <CARMENRAE@PRODIGY.NET> Subject: CARMEN RAE'S SURGERY MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit
Hi everyone,
It's Carmen Rae's dad (Mike). I don't do too much on the listserver as Robin handles that department in our household. She does keep updated daily on all the happenings with each and everyone of you. Robin used "Creative Memories" to design a spectacular book of all of Carmen Rae's friends.
Anyway, Carmen Rae had her Cranial Vault Remodeling on Friday. She came through surgery with "flying colors." It has been less than 48 hours and the swelling is already decreasing, she can open her eyes and she is eating well. She even smiled at me this morning.
Dr. Robert Wood of Emory University did a marvelous job. Her head looks really good. She has her bandages off and we were amaxed at the job he did. Dr. Wood uses the disolvable plastic plates in the remodeling process. I did take pictures throughout and in the near future, we hope to get the info to Don Sears for a Web Page for Carmen.
God Bless each and everyone of you. Your presence here on the listserver have been a blessing and source of strength for us. We hope to be home on Wednesday and we will update you then.
Mike & Robin Hill (And Carmen Rae too!) ========================================================================= Date: Sun, 14 Jun 1998 12:37:59 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Frank & Annette Contrino <contrino@BUFFNET.NET> Subject: Re: Surgeries Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
> >Frank, were you given any recommendations on soaps? The skin on Amy's hands can quickly react to anything like those liquid soaps - whatever it is that makes them liquid does not suit her. >
No specific recommendations were made. We just used dishwashing liquid. I'm sure that shampoo, liquid hand soap, bath bubbles, or bar soap could be used to create the soapy water. I'm not sure why soapy water was better than just plain warm water. Maybe it really wouldn't make a big difference other than the length of time the child may play in it (bubble attraction). I would use whatever you use for baths and showers if there's a problem with skin reactions. I think the water was really most important. We would watch lots of skin and scabs soak off all the time. The removal of the dead skin and the softening effect was what really helped them to heal quickly and nicely.
Frank contrino@buffnet.net ========================================================================= Date: Sun, 14 Jun 1998 16:34:16 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Janine Krebs <Yonstein@AOL.COM> Subject: Re: CARMEN RAE'S SURGERY Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Congrats on coming thru with flying colors. Hope the recouperation process is an easy one and that you will be home on Wed.
Hope Mom and Dad are doing ok, too.
Janine Krebs ========================================================================= Date: Sun, 14 Jun 1998 16:47:46 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jennifer Graham <Jenngram@AOL.COM> Subject: Re: CARMEN RAE'S SURGERY Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Congratulations on the surgery. Its so nice to have the first biggie behind you. These doctors do truely amazing work. I tell Jordans often b/c I am sure he doesn't hear it as much as he deserves to. God bless each and every one of them for what they have done for our kids.
Hope the recovery continues to go well and we'll be loking foward to hearing from you.
Jenn(Tampa/St. Pete) ========================================================================= Date: Sun, 14 Jun 1998 17:54:11 -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: Picture Exchange Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
I wanted to add a name to our picture exchange. There is a family that I first talked to about a year ago who has a beautiful daughter named Jaclynn who was born born with Aperts. Jaclynn is twelve years old and is just a great kid. Theirs is the first family I talked to after Billy came home from the hospital and they were so helpful to us. They do not have a computer but,I talked to Cindy (Jaclynn's mom) today and she whould very much like to be a part of the exchange. I will sent her the list of names and addresses and she said it was ok for me to post her address so you can all get started sending. Jaclynn is really excited about doing this. She is going to be starting middle school this year and is one smart cookie.
Hope everyone is doing good and we are happy to hear that Carmen Rae is doing well.
Karen(PA)
Jaclynn Samhammer 90 Martha Drive Fallsington,PA 19054 ========================================================================= Date: Sun, 14 Jun 1998 19:52:36 -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: Carmen Rae MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
The Hill family, We are so glad to hear that Carmen Rae came through her surgery well. We will continue praying that she continues her recoperation and will soon be home with her mom and dad.
Jack & Raquel Miller ========================================================================= Date: Sun, 14 Jun 1998 20:24:08 -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: Nicole's Surgery MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Hello everyone,
Nicole's surgary has been rescheduled for Thursday, June 18th. We were so happy to find out that the delay would only be for one week. We can't wait until this first "biggie" surgery is behind us. Our doctors bumped other less complicated surgery in order to minimize our wait since her surgery has been cancelled twice.
We will keep you all posted.
Jack & Raquel Miller ========================================================================= Date: Sun, 14 Jun 1998 22:08:41 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "<George Siebert>" <GSieb91515@AOL.COM> Subject: Re: CARMEN RAE'S SURGERY Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Mike and Robin,
So glad to hear Carmen Rae's doing so well. Eating well after 48 hrs. is great. It took Jonathan several days to get his appetite back. His eyes were swollen shut for about 3-4 days too. Sounds like she is doing wonderful. Try to get some rest and hope the recovery continues to go so well.
Best Wishes,
Brenda