========================================================================= Date: Wed, 1 Apr 1998 06:35:27 -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: argentina MIME-version: 1.0 Content-type: text/plain; charset="us-ascii"
Dear Gabriel, carolina, and Catalina,
My hand surgeon travels extensively to confrences around the world, and he knows of a world reknown orthopedic surgeon in Argentina. He says that he speaks great english. He has studied in America and is know sending his son(a soon to be doctor also) abroad, too. If you would like this surgeons name, I will get back in touch with him and get this infomation to you. God Bless!
Denise Graham ========================================================================= Date: Wed, 1 Apr 1998 08:47:08 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "Zaengle, Joseph D" <Joseph.Zaengle@UNISYS.COM> Subject: Kindergarten question MIME-Version: 1.0 Content-Type: text/plain; charset="iso-8859-1"
Our son will start kindergarten in the fall. We're in the process of checking out all the possible classes for him ranging from a regular class thru the various special Ed classes offered by our school district. By way of intro, Quentin has been in a 'regular' pre-school for the past two years and has done fairly well although there are some behavioral issues (compliance, attentiveness). He'll continue to have his 'physical' therapies, OT, PT, etc. met in any case but we're looking for ideas on education.
We realize all kids are different and understand the IEP process, so we're trying to get some ideas on what types of kindergarten programs worked best for your child. We've read that some of you are doing home schooling (not an attractive option for us), some are in full-time special Ed programs, some are in part-time programs, etc. While we wait for Quentin's evaluation to come back, we'd like to know what kind of things you specified in your IEPs, especially if they're creative! These are personal issues of course, so if you'd like to send us private e-mail we would certainly keep it confidential.
Regards, Joe and Anne Zaengle ========================================================================= Date: Wed, 1 Apr 1998 08:01:44 -0800 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Joseph Chan <jchan7@PACBELL.NET> Subject: Re: Kindergarten question MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Zaengle, Joseph D wrote:
> Our son will start kindergarten in the fall. We're in the process of > checking out all the possible classes for him ranging from a regular > class thru the various special Ed classes offered by our school > district. By way of intro, Quentin has been in a 'regular' pre-school > for the past two years and has done fairly well although there are some > behavioral issues (compliance, attentiveness). He'll continue to have > his 'physical' therapies, OT, PT, etc. met in any case but we're looking > for ideas on education. > > We realize all kids are different and understand the IEP process, so > we're trying to get some ideas on what types of kindergarten programs > worked best for your child. We've read that some of you are doing home > schooling (not an attractive option for us), some are in full-time > special Ed programs, some are in part-time programs, etc. While we wait > for Quentin's evaluation to come back, we'd like to know what kind of > things you specified in your IEPs, especially if they're creative! These > are personal issues of course, so if you'd like to send us private > e-mail we would certainly keep it confidential. > > Regards, Joe and Anne Zaengle ========================================================================= Date: Wed, 1 Apr 1998 11:41:29 -0800 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Robyn Johnston <robyn@ORDATA.COM> Subject: Quick news Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
Hi everybody, Just a quick note from the johnston household. :-)
Sorry I haven't written lately, I caught a terrible flue virus the day I came home and it literally wiped me out for 3 days. My resistance must have been down after the delivery! If nothing else, it was a quick way to lose a lot of my pregnancy weight! ;-) Anyways, I wanted to thank everybody for the well wished and welcomes. I will try to get caught up in all of my messages in the next couple of days!
Caden and Brenna are both doing well. Caden is a little "chow man" and I swear he is putting on weight already! Brenna is such a sweet and wonderful big sister. She wants to give her little brother lots of kisses and loves all of the time. She is accepting her new little brother better than we ever thought she would! Yeah! :-) (at least so far!)
Sounds like Ceci's Balloon release was a success! Our thoughts were with you! THanks Jen for picking up extra balloons! :-)
Well, more news later. I have got a lot to get caught up on!!!! Thank goodness our inlaws were here!!!
Take care, Robyn & the Plum and the 'little man' Caden ========================================================================= Date: Wed, 1 Apr 1998 16:27:36 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: ETolson643 <ETolson643@AOL.COM> Subject: Re: Craniofacial Team/Boston Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
The craniofacial team is headed by Dr. John Mulliken and Dr. Nalton Ferraro. The Phone # is 617-355-6000...that's the main number. Ask for the specific doctor or ask for the craniofacial clinic. The coordinator is Kit Mount. Children's Hospital in Boston is located on Longwood Ave. Please feel free to email me directly if you have other questions.
Beth Tolson ========================================================================= Date: Wed, 1 Apr 1998 21:31:42 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Yonstein <Yonstein@AOL.COM> Subject: nothing and everything Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Hello all,
I just wanted to say that I am back at work and feeling pretty good about it, especially since the woman I have watching the children is great. Nicholas really likes her alot, since he was a big concern. And Emily, well you guys were right. My babysitter is in love with her. She wants to know if she is always this happy and good. And yes she is.
It's nice to know that I can reclaim a part of my life back and relax knowing that they are taken care of so well. That was a very anxious time trying to find someone and hoping that they would love them.
And Lynn, as far as calling Andrew special, I have always called Nicholas my special boy since he was born. Now Emily is my special girl. I think all children need to know that they are special in their own way, with or without Aperts.
I, too, often think that she won't be able to do certain things with her hands, but she continues to amaze me also. She has been picking up toys for awhile and putting them to her mouth. I have a spoon that has a wide hole in the handle part of it. I started using that to feed her. I put the spoon in her hand to hold it and she grabbed it and put it right to her mouth. That was amazing to watch.
I am learning to never underestimate her. She is a very determined little girl.
Hope all is well with everyone.
Thinking of all of you.
Janine (In rainy, rainy rainy New York) ========================================================================= Date: Wed, 1 Apr 1998 20:50:33 -0600 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Carrie Lynn Hobbs-McKenzie <clm@WIN.BRIGHT.NET> Subject: goodbye everyone!!! MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
I just wanted to let you folks know that I have to unsubscribe.
I've been spending waaaay too much time on THIS MACHINE, and toooo little time on my KIDS. They're starting to act up again. And I'm starting to feel grumpy and distracted. :-(
I know I only posted a couple times, but I was always, always reading!
I hope the very, very best for you ALL, and your sweet, gorgeous children!
I will resub sometime soon, maybe (Gaelin's teeth are beginning to come through his "new" palate, he's STILL not able to form words [apraxia], etc... 'got concerns yet... to say the least...)
Anyway, God bless you all! I'll be thinking of you!
Carrie -- ~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*~~* WHO WE ARE! - Home Schooling, Parenting, Photos, Childhood Surgery, Depression & Mothering, WOH & SAH Moms, and MORE! ~~* Sign Our Guest Book and Visit Again! *~~ http://www.angelfire.com/oh/nursecleftbaby/hello.html ~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*~~* VISIT THE CYBERZOO!!! Animated Animals Will Delight Your Toddlers!!! http://members.truepath.com/MOMMY/cyberzoo.html ========================================================================= Date: Thu, 2 Apr 1998 10:13:43 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Lisa McGahan <wmcgahan@IX.NETCOM.COM> Subject: physical therapy MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit
my daughter is 12 weeks old. i read Joe Zaergle's message on kindergarten and saw that his child has physical therapy. do all the children need physical therapy and at what age should it start? what is OT and PT therapy? who told you about your therapy, the pediatrician? many many thanks! ========================================================================= Date: Thu, 2 Apr 1998 01:18:15 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Thornq <Thornq@AOL.COM> Subject: Re: physical therapy Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Lisa,
Andrew has had Early Intervention since he was three weeks old. I think what happened is that the social worker that came to see me in the hospital contacted EI for me. It is not something you have to do, but I am forever grateful to Andrew's coordinator, PT and OT. He will soon be started with a Speech Therapist. I'm not sure about everyone needing PT and OT, but it might be something to consider. What they will do is probably come to your house and do an evaluation and will let you know from there. But as far as I know, everyone on the listserv has PT and OT or one person to combine both. It might be something worth looking into.
Good luck and if you have any more questions, please feel free to e-mail me personally.
Lynn Thornquist (Holliston, MA) Thornq@aol.com ========================================================================= Date: Thu, 2 Apr 1998 00:21:05 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Thornq <Thornq@AOL.COM> Subject: Re: Will Son blame father Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Alice,
I guess that may be my other problem. My husband does blame himself for Andrew's disability and so does the rest of his family. What my husband has is hereditary. It doesn't help that Dr. Upton has also taken blood from him and his whole family to see if there is some connection. I tell him all the time that if he puts his feelings as a child on Andrew, he will grow up with low self-esteem as well. My husband has very low self-esteem. It is much better since I've known him, but still it's there. And he will not go talk to someone about his feelings of guilt. He is not a very talkative person either and doesn't talk to anyone easily....including me!!! He has to be in the mood. Maybe I should just wait and see how things develop. His guilt towards Andrew has gotten better since his surgeries and even dad is thinking about having Dr. Upton fix his left hand. He wants to be able to wear his wedding ring on the correct finger. Isn't that sweet!!!!!
Thank you again for your reply.
Lynn ========================================================================= Date: Thu, 2 Apr 1998 07:26:41 -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: PT,OT,&ST MIME-version: 1.0 Content-type: text/plain; charset="us-ascii"
Lisa, My son, Daryl, who is now 2 years old has recieved physical and occupational therapies since he was 2 months old. I think the doctors in the NICU told us that he would need extensive therapy to help him learn to use his hands now and when he had the surgeries. Physical therapy really helped with his range of motion. It was at 30% and now he is at 90%. At age 18 months we started Speech and Language therapy. This has proven to be a tremendous success. Daryl learned over 12 signs in a short time and is now putting words with these signs. I can't say enough good things about our therapy program. I of course work with him at home. I think that is the key to great sucess for everyone. Good luck and if you have any other questions, feel free to ask.
Denise Graham ========================================================================= Date: Thu, 2 Apr 1998 08:54:28 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jenngram <Jenngram@AOL.COM> Subject: Re: physical therapy Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
I think the decision to have therapy is a personal one. ordan is 6 mos. and is going to OT (occupational therapy) once a week. he started a wek after his cranial surgery which was 5 mos. Does he really need it? Probablly not. It seems all we have to do is show him how to perform a task and he does it..and won't stop doing it actually. But, the therapist shows us ways to help him perform these tasks..(ie which part of the hip flexors to manipulate when trying to get him to roll back over to his back..a better way to position his arms under him when on his tummy so its more comfortable for him) So, I am not sure about necessity. The therapist even reccommended once every 2 weeks b/c he does ok alone, but I felt that for Jordan to be at ease w/ her it should be weekly..otherwise half the hr. is spent him figuring out who she is..which happens if we miss a week. It was reccommended by his DEI physician at my request b/c I felt we should be doing something for him so he wouldn't get behind. Thats more my paronoia than truely the doctors concern, but she appeased me and off we went!!!!
Hope it helps. Feel free to e-mail me w/ any questions you may have
Jenn ========================================================================= Date: Thu, 2 Apr 1998 15:52:55 -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: Judy Amerman <jamerman@UTI.COM> Subject: question MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit
Hi,
A friend of mine just called me and told me that a gal that she works with had a baby girl and the little girl's bones are fused in the back of the head. There is more testing being done on the baby so that is all I know. Is there a name for when the bones are fused like that? If anyone can give me some feedback on this little girl's problem. /such as things you have dealt with I would appreciate it. I will probably be talking to this girl next week or so. Nick has aperts so I can tell her about that but he never had surgery at the back of the skull for bone fusion so. If you respond please mention your child's age and their accomplishments also so I can pass this along My sure mother is very distraut right now. (We've all been there) Her baby is in one hospital and she is in another. My friend said that she wasn't even able to hold the bably before the baby went to Children's.
Thanks alot
Judy
jamerman@uti.com ========================================================================= Date: Thu, 2 Apr 1998 17:01:32 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jenngram <Jenngram@AOL.COM> Subject: Re: question Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Judy,
Jordan didn't have a problem w// the sutures in the back of his head, but my sister is law is a NICU nurse and has seen tons of plain ole craniostynosis without a syndrome involved. The surgery is the same as for a child w/ Apert, but do better as far as long term prognosis..ie..their bones don't seem to revert to their old ways like some "syndrome" individuals do. If there is nothing else wrong, I'd say things look pretty good...just a surgery to release the sutures I believe is all thats involved. I don't think it should hamper the developmental aspect of things. Jordan is almost 7 mos. and does all the things he should be..age appropriate I should say. His sutures were fused in the front (coronal), but again that difference shouldn't have too much of an impact on things.
Jenn(Tampa/St. Pete) ========================================================================= Date: Thu, 2 Apr 1998 18:57:52 -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: ize <ize@TACOMA.CEATLABS.OKSTATE.EDU> Subject: Big toe surgery MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Hello to all,
Yesterday Felipe had surgery on his feet. Everything went just fine and we come back home on the some day. The doctor removed the bent big toe from Felipe's left foot and straightened his right big toe. Now he has five toes on each foot. The doctor told us that Felipe is not going to have shoes problem anymore.
The Ize's. ========================================================================= Date: Thu, 2 Apr 1998 20:58:53 +0000 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "J. G. Lindamood" <chanan8@JUNO.COM>
Congratulations to Felipe on the successful toe surgery! Yes!
Joanne, it's COLD AGAIN! In Ohio!
_____________________________________________________________________ You don't need to buy Internet access to use free Internet e-mail. Get completely free e-mail from Juno at http://www.juno.com Or call Juno at (800) 654-JUNO [654-5866] ========================================================================= Date: Thu, 2 Apr 1998 22:08:47 -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: Christopher Kilner <ckilner@OSF1.GMU.EDU> Subject: Re: Ceci In-Reply-To: <199803201533.KAA90744@pimout1-int.prodigy.net> Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
Dear Hill family,
Thank you for the thoughts and prayers. Without all the support we've received, I don't know how we'd have the strength to get out of bed in the morning.
We are also finding strength in the knowledge that even 3 1/2 years with Ceci was a gift beyond measure.
Thanks again,
The Kilners ========================================================================= Date: Thu, 2 Apr 1998 22:49:11 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Yonstein <Yonstein@AOL.COM> Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
So glad to hear that Felipe's toe surgery went well. Hope he recovers quickly.
Janine ========================================================================= Date: Thu, 2 Apr 1998 23:04:35 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Thornq <Thornq@AOL.COM> Subject: Re: PT,OT,&ST Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Denise,
One quick question and anyone else may answer if they feel like it. Why learn sign if they are not deaf? Maybe that is a stereotypical thing to say, but I don't get it. Andrew's OT uses some sign with Andrew and I think I would rather him learn the appropriate words for things than the sign language. Does anyone have any thoughts?
Thanks!
Lynn ========================================================================= Date: Thu, 2 Apr 1998 22:13:51 -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: Judy Amerman <jamerman@UTI.COM> Subject: Re: PT,OT,&ST MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit
---------- > From: Thornq <Thornq@AOL.COM> > To: APERT@LISTSERV.AOL.COM > Subject: Re: PT,OT,&ST > Date: Thursday, April 02, 1998 10:04 PM > > Denise, > > One quick question and anyone else may answer if they feel like it. Why learn > sign if they are not deaf? Maybe that is a stereotypical thing to say, but I > don't get it. Andrew's OT uses some sign with Andrew and I think I would > rather him learn the appropriate words for things than the sign language. > Does anyone have any thoughts? > > Thanks! > > Lynn
Lynn,
It's me again. Seems like all of a sudden you and I have a lot to talk about. In answer to signing. When Nick was younger and going to Easter Seals, he was taught some sign language because he was very delayed in his speech and they will teach signing because it is easier for the kids to let us know just what they cannot tell us verbally. When Nick started school, early childhood, he was three years old and only said about 12 words. We thought he would never start to talk. Oh, but he finally did and hasn't stopped. Alot of the signing that was done with him was motions to let us know what he wanted. Hope this helps
Judy jamerman@uti.com ========================================================================= Date: Thu, 2 Apr 1998 23:25:51 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Thornq <Thornq@AOL.COM> Subject: Re: question Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Judy,
All of Andrew's sutures were fused except for the top suture. This caused Andrew's brain to grow up and down only. He had surgery on the back of his skull when he was three months old. They technically rebuilt the back of his skull. Before the surgery the back of his skull was flat as a board and had quite a bit of pressure. Andrew's head was extremely severe. The described the back of the skull like a "piece of swiss cheese". Not too comforting. They were able to remove the skull and take two pieces from it and shave pieces off the top of his skull to rebuild the back. All the bones are just about done fusing together. Andrew has Kiari Malformation which means that his brain grew down through the base of his skull. It will always be there, but will not increase. Because of the severe pressure, some of his ventricles are enlarged, but no need for concern. They will just keep a close eye on it. I believe the surgery name was a Craniosynostosis Release. But I am not real sure. Any more questions, please e-mail me directly.
Lynn Thornquist Thornq@aol.com ========================================================================= Date: Thu, 2 Apr 1998 23:33:29 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Thornq <Thornq@AOL.COM> Subject: Re: PT,OT,&ST Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Thank you very much!!! It really did help. His OT has started to do a little signing, but I think that it is habit for her, rather than specifically for Andrew. Gotta go to bed, talk to you later.
Lynn ========================================================================= Date: Thu, 2 Apr 1998 23:35:39 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: DnJJenner <DnJJenner@AOL.COM> Subject: Re: PT,OT,&ST Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Lynn, I totally agree with you... To me if they are not deaf, its just makes things easier for the "teacher" if they can teach them to sign, instead of speech. just my opinion. Dawn Jennerjohn ========================================================================= Date: Thu, 2 Apr 1998 22:01:32 -0800 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Lark Jarvis <lark@INVOLVED.COM> Subject: Re: PT,OT,&ST In-Reply-To: <721ad0ba.3524671d@aol.com> Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
At 11:35 PM 4/2/98 EST, you wrote: >Lynn, I totally agree with you... To me if they are not deaf, its just >makes things easier for the "teacher" if they can teach them to sign, instead >of speech. >just my opinion. >Dawn Jennerjohn >
The theory/reasoning is that there is a developmental window/timeperiod during which the neural connections in the brain that are necessary for syntax (operating rules) of language develop most efficiently--that's language of ANY kind, be it ASL or spoken. (Worst case scenario, which isn't likely with any of the kids talked about here, the developmental window is missed entirely, for some reason, and a vocabulary develops later on, but the "rules" of language never develop, and so the vocabulary is largely useless . . . That's very rare and very tragic, but it has been known to happen, in a few children who were found after being abandoned and isolated so that they were never exposed to or able to use language of ANY kind . . . )
So with use of signing, even though the oromotor mechanics may not be quite ready for spoken language yet, at least the right neurons are connecting so that the paths are already laid down so that spoken language will progress faster/more efficiently once all the mechanics are in place. Not to mention the emotional benefits of reducing frustration about not being able to communicate.
Lark ========================================================================= Date: Fri, 3 Apr 1998 07:56:46 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jenngram <Jenngram@AOL.COM> Subject: Re: PT,OT,&ST Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Why the signing was a question I had also...
Jenn ========================================================================= Date: Fri, 3 Apr 1998 07:55:23 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jenngram <Jenngram@AOL.COM> Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
yeah!!!! I am so glad Felipes surgery went well..and show shopping will no longer be a nightmare!!! As if shopping w/ kids isn't hard enough!!!
Jenn(Tampa/St. Pete....VERY hot and humid..yet sunny!!!! sorry to those caught by old man winter yet AGAIN) ========================================================================= Date: Fri, 3 Apr 1998 07:45:43 -0600 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Chad & Denise Graham <cgraham@INFOAVE.NET> Subject: OT,PT,&ST MIME-version: 1.0 Content-type: text/plain; charset="us-ascii"
LYNN, Our speech therapist doesn't do sign with Daryl for her benefit. He could only say DADA and when we would slowly try to get him to say a word he would try, but get so aggitated that he would lose interest and would go play. I researched to make sure if he learned sign that it wouldn't make him not want to speak. He picked up so quick! It was great! If he wanted something to eat or drink instead of whinning and getting upset because I didn't know what he wanted, he would make a sound combined with the sign and I could immediatly respond to his request. After learning about 12 different signs such as: more, eat,drink, please, thank you, help, on, all done, apple, mine, again, and a few others. Not long after he had learned these signs(2 months) he was so happy and content that he could communicate his needs and wants without frustration(an so was I. After that he was more willing to try and speak. He could sign more, and I would say "Do you want more?" He would say yes. I then would make a little more of a demand for a sound with the sign. We started with MMMM with the sign. He learned and complied within a couple of days. Daryl puts forth a lot of effort, so you can't just refuse to give him what he wants just because he can't say it like me. As long as he gave it an honest try 2-3 times per word he got what he wanted. If we continued to refuse unless he did it the right way he would eventually give up because of frustration. He now says Bye Bye, Hi, Mama, Dada, Kita(his sister), more, yes, no, Nana, Papa, eat, drink(he says dink), done, on, up, please(he says pease). Learning the signs and learning these words later took only 5 months total. We don't teach him sign anymore, because he can communicate well with us. He is learning new words almost everyday. What is so funny now, is that I am teaching my daughter and her 2 friends how to sign the song "My Heart Will Go On" by celine Dion. They wanted to do it for the talent show at their school(might I add, they are doing great). Daryl watches us and he has picked up on some of the signs. When we are practicing he will wait for the appropriate time and sign what signs he learned when the girls do it. It is too CUTE! If you have any more questions or specifics feel free to ask on the listserv or private e-mail(whichever). God Bless!
Denise Graham ========================================================================= Date: Fri, 3 Apr 1998 08:22:55 -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: Tim and Carol Graves <timg@BELLSOUTH.NET> Organization: Home Subject: Signing MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Nicholas didn't talk at all because of having the trach tube. we tried using the passy muir valve on it to get him to make sounds, unsuccessfully, so, they taught him basic signs such as drink, and eat and so on just so he could let us know what he wanted and needed, when he finally did begin to talk the signs helped, the therapist would do the sign and Nick would say the word for it. Of course now, he talks non stop, but back in his younger days, I was thankful for the signs, as it gave him a way to communicate and not feel so frustrated. Carol Graves ========================================================================= Date: Fri, 3 Apr 1998 08:50:20 -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: Tim and Carol Graves <timg@BELLSOUTH.NET> Organization: Home Subject: IQ MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Are there any of your kids that are testing below their appropriate age level on IQ or similiar intellectual test?? Nicholas is testing at about a year delay, or actually about a year and 3 months.... mostly due to writing and speech problems his teacher says... he has a very difficult time in writing, have any others and can anyone offer any suggestions or advice or something I could try to help him on this? Carol ========================================================================= Date: Fri, 3 Apr 1998 08:03:38 -0700 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: baconsmith <bluenose@TELUSPLANET.NET> Subject: signing and speech (was PT,OT,&ST) Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
Lark, thanks for this. I had understood the part about the neural pathways for communication. And your explanation was great. I just want to emphasize the last sentence in your reply:
>Not to mention the emotional benefits of reducing frustration about not >being able to communicate. > >Lark >
When little kids are trying to communicate, they are trying to affect and control their world. If verbal speech is difficult, then signing gives them a way to be an active part of their world, instead simply a little being who is acted upon. Many kids who are cleft-affected (where those oral structures are compromised) evidently learn some sign along with spoken words. When kids are in this developmental stage, I would be happy to have them learn whatever they can to act on their world and be a part of it. Signing is simply another language and a big boon to these little characters if speech is compromised at all.
I would think, tho, that with the syndactyly of the hands, some signs will be hard for them to make.
My two cents for the jar. Pat in Calgary (mommy to the Peach, Tessier 4 facial cleft) email to: bluenose@telusplanet.net IM: onlypeach shake and shake the ketchup bottle. none will come and then a lot'll ... unknown ========================================================================= Date: Fri, 3 Apr 1998 09:56:58 -0600 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: ize <ize@TACOMA.CEATLABS.OKSTATE.EDU> Subject: Thank you! MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
We want to thank you all for the good wishes on Felipe's recovery. He is doing great! The bad news is that he wants to walk around and he can't do that for three weeks, because his casts are all the way up. After that, the doctor will put short casts for two weeks more...
Felipe's PT, OT and ST, never used signal language with him.
Our thoughts and prayers are with you all.
Claudia, Carlos, Rafael and Felipe Ize. ========================================================================= Date: Fri, 3 Apr 1998 08:21:15 -0800 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Joseph Chan <jchan7@PACBELL.NET> Subject: Signing off MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
> Consider signing a bridge for attaining verbal skills. We were > thankful Roxy learned some simple signs in her early years (which > meant we as parents had to learn as well!) It was actually great > fun. Now she talks non-stop! ========================================================================= Date: Fri, 3 Apr 1998 11:28:30 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Leanne Maclean <lmaclean@NETCOM.CA> Subject: Signing and Kindergarten MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii
Amy started in an Early Intervention program four - 1/2 days per week when she was three. When she started her vocabulary was approximately 30 one syllable words. She was taught some signing that she used in conjunction with vocalizing. I agree with lessening the frustration level with signs and then increasing what is expected vocally. She always had used a lot of gestures and would drag us places to point at what she wanted!
This year, her kindergarten year, we decided to keep her in the Early Intervention program. After comparing it with kindergarten we decided that it had a lot more going for it. Actually a friend of mine whose daughter is in kindergarten is quite envious when I talk about Amy's program. She goes four full days (an occassional fifth day) a week. She receives PT, OT and speech therapy in the program. There are 15 "special needs" kids in the mornings and 5 "community kids" integrated in the afternoons. I understand that there is not only a waiting list for the "special needs" kids but one for the "community kids" who act as speech role models, as well!
Now Amy talks non stop and is beginning to read. She has a real interest in language. The occupational therapist is working on her drawing skills and has come up with some interesting ideas to help her with her printing skills. I'm not the least concerned academically with the reading and math area as she is probably stronger in this area than her brother was at her age (and he is now a very strong grade 3 student) but I worry that her fine motor skills will slow her down and frustrate her when it comes to printing.
We are in a similar situation as we are trying to decide on a grade one placement. Our choices are between the school that she has attended her three years of Early Intervention in and our community school that her brother attends. Her community school would have to contract OT and does not receive much speech therapy time. The other school has an OT on staff and at the moment has a speech therapist there 4 days a week. We have three inservices coming up that I plan to attend that will highlight what each school can provide and I have an appointment with the principal at our community school where I expect him to outline what they can offer. It is important to shop around and also know what kind of funding your child qualifies for. I made an initial contact with the principal, gave him a brief description of what Amy needs, told him the level of funding her present school is applying for (here in Alberta the funding follows the child), gave him the name of the contact person at her present school and arranged to have another meeting so he had time to gather the information he needed. I guess the one thing that has made the whole process a little easier is that I realize that even if we decide this year to put her in the school outside her community we can reevaluate each year and perhaps one day have her attending the same school as her brother.
Best of luck with your decision!
Leanne ========================================================================= Date: Fri, 3 Apr 1998 08:39:02 -0800 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Joseph Chan <jchan7@PACBELL.NET> Subject: Re: IQ MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Tim and Carol Graves wrote:
> Are there any of your kids that are testing below > their appropriate age level on IQ or similiar > intellectual test?? >
We recently got the test results from Roxy's IEP. There are several kinds of cognitive tests available. On the Leider and Toni tests, Roxy scored average because they require more visual and low communication skills. But for the Wexler (most widely used) Roxy scored behind because this test requires more verbalizations, and the tester could not repeat or elaborate examples (she also wears bilateral hearing aides). Speech is Roxy's weakest subject. She is slightly behind but this doesn't bother us. She continues to make progress and growth with super effort!
Rose La Mirada, CA ========================================================================= Date: Fri, 3 Apr 1998 10:51:11 -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: Tim and Carol Graves <timg@BELLSOUTH.NET> Organization: Home Subject: Re: IQ MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
That sounds alot like Nick,, he scores average on visual and low communication testing, but below on others, his teacher tells us not to worry about this, that she thinks the knowledge is there, he just has trouble communicating what he knows. Thanks for your reply! Carol
Joseph Chan wrote:
> Tim and Carol Graves wrote: > > > Are there any of your kids that are testing below > > their appropriate age level on IQ or similiar > > intellectual test?? > > > > We recently got the test results from Roxy's IEP. There are several > kinds of cognitive tests available. On the Leider and Toni tests, Roxy > scored average because they require more visual and low communication > skills. But for the Wexler (most widely used) Roxy scored behind > because this test requires more verbalizations, and the tester could not > repeat or elaborate examples (she also wears bilateral hearing aides). > Speech is Roxy's weakest subject. She is slightly behind but this > doesn't bother us. She continues to make progress and growth with > super effort! > > Rose > La Mirada, CA ========================================================================= Date: Fri, 3 Apr 1998 15:12:59 -0800 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Steve And Stacy Bell <sshb@EROLS.COM> Subject: Re: PT,OT,&ST MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Thornq wrote: > > Denise, > > One quick question and anyone else may answer if they feel like it. Why learn > sign if they are not deaf? Maybe that is a stereotypical thing to say, but I > don't get it. Andrew's OT uses some sign with Andrew and I think I would > rather him learn the appropriate words for things than the sign language. > Does anyone have any thoughts? > > Thanks! > > Lynnsign language is very helpful if a child is trached or has severe palet problems. my daughter Brooke has been trached since she was two months old because she cannot breath through her nose. The speech therapist recommended sign for her also to help her communicate her wants and needs also cause and effect toys with switches help along with picture books and flash cards. Stacy Bell ========================================================================= Date: Fri, 3 Apr 1998 18:39:55 -0300 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Gabriel Dantur <gdantur@IMPSAT1.COM.AR> Subject: Re: argentina MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 8bit
Hi, thanks for your quick response. It will be wonderful to have the information you are offering me. Pls try and get those names for me.
Thanks in advance.
Best regards, Gabriel Dantur
---------- > De: Chad & Denise Graham <cgraham@INFOAVE.NET> > A: APERT@LISTSERV.AOL.COM > Asunto: argentina > Fecha: Miércoles 1 de Abril de 1998 09:35 > > Dear Gabriel, carolina, and Catalina, > > My hand surgeon travels extensively to confrences around the world, > and he knows of a world reknown orthopedic surgeon in Argentina. He says > that he speaks great english. He has studied in America and is know > sending his son(a soon to be doctor also) abroad, too. If you would like > this surgeons name, I will get back in touch with him and get this > infomation to you. God Bless! > > > Denise Graham ========================================================================= Date: Fri, 3 Apr 1998 17:14:26 -0800 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Laurie Ann Bailey <jkb@ELPASO.NET> Subject: Re: Caden Lee Johnston MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Robyn Johnston wrote: > > Hello friends, > > Just a quick note to pass on. Caden Lee and I are home
Hey guys! Laurie Bailey here. Congratulations on your new arrival. Aren't new babies wonderful? Jordan Elizabeth just turned 4 weeks old on Wednesday. Big brother Jacob (23 month old with Apert's) is loving every minute of being a big brother.
Sorry I haven't been around for a little while. My computer crashed and I had to take it in for repairs.
I want to send my heartfelt thoughts and sympathies to the Kilner family. When I read the message, I just cried at my computer. These kids of ours are very special and every one of us feels when someone else is hurting. Your family is in our prayers. As is the Harmon family.
Laurie, Kevin, Jacob, and Jordan Bailey jkb@elpaso.net ========================================================================= Date: Fri, 3 Apr 1998 22:14:06 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jack and Raquel <jara1@BELLSOUTH.NET> Subject: At the risk of... MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Hi everyone,
I am going to write this e-mail at the risk of having you guys probably tell us that we are just plain spoiling Nicole.....but here it goes anyway...
Keep in mind that Nicole is now 6 months old today...When she was about two months of age she started with the sniffels, runny nose, etc. and of course that made everything else worse because she also had colic. Thank goodness the colic only lasted about 2-3 months but boy were those long months. To get back to my story Nicki didn't sleep much during the day she would take little weeee cat naps about 10 to 15 minutes long and then with the sniffles it made it worse because she could hardly breath through her nose. So one day I laid her in her carrier and she slept a lot better, I guess being in the upright position helped her breathing. Well to this day Nicki still sleeps in her carrier (all cushioned up of course) on our bed with us, yes we have a king size bed. But the major problem and the reason she still sleeps in her carrier is she wakes up every two to two 1/2 hours a night. She goes to sleep at around 8:30 then she'll probably wake up at 10:30, then 12:00 then 1:30 etc., etc., etc., Now here is where the spoling continues, when she wakes up we give her the bottle she takes a few swigs and she falls right back to sleep and we have her on our bed because we just reach over to do this so our sleep is not greatly interupted. But in reality it is interupted because we really don't rest and haven't rested for a long time. I know it's not good to give her the bottle like that because eventually it could rot her teeth when she gets them. During the day she takes up to two hour naps now with my sister who is her care taker while we are at work, and of course she sleeps on her bellie in her crib (no carrier). I guess what I am trying to say is yes she can sleep in her crib but since she is so spoiled now and wakes up so frequently during the night its easier for us to just slip a bottle in her mouth because she falls right back to sleep as opposed to having to pick her up almost every hour on the hour to settle her back to sleep.
Our pediatrician said that after her surgery next month, we have to have a long talk with him. Basically like that article I sent to everyone about 7 things a disabled kid wants...well he said we have to treat her like any other child she is no different and I guess that is going to mean a lot of crying, you know let her cry herself back to sleep, do not pick her up, do not feed her, etc., etc. and of course put her in her crib. I feel horrible because sleeping in a carrier is restricting her movement and I know that is not good. So I guess we are going to have to buckle up and get strong with her to shake her out of this bad habbit. (But we'll wait until after her surgery) May 7th is the scheduled date so a bit after that we'll start. Who knows maybe her stay at the hospital will help and she will get used to sleeping out of her carrier during the night, wishfull thinking??
I'm sorry for this long e-mail I just felt guilty and felt the need to share this with all of you. Please, comments and suggestions are highly appreciated and yes you can scoled me, I will not get offended and no Nicki is not my first child she is my fourth (you wouldn't know that by the way I am acting) Again I apologize for the lengthy letter.....
Waiting to hear from you all....
Raquel Miller jara1@bellsouth.net ========================================================================= Date: Fri, 3 Apr 1998 22:41:14 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Copperhd87 <Copperhd87@AOL.COM> Subject: Re: Question from Judy Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Judy, We have been on the list server for a couple of months now and have really appreciated being made to feel so welcome by everyone even though our son, Mitchell, does not have Aperts. Mitchell does have saggital craniosynostosis, which is fusion of the top skull suture. We went thru many of the feelings and fears that your friends are now experiencing. I'm sure everyone on the list server has been there. I'm not certain about the details when the back sutures are closed. But, to my understanding, when a syndrome is not involved, or when multiple sutures are not closed, the prognosis is very similar. Mitchell had his first surgery at 3 months. It was performed by a ordinary neurosurgeon here in Oklahoma City. We were so upset that we just trusted people to tell us what to do. We now regret that path, but I just was not able to think clearly at the time. Mitchell is now 15 months old and facing another surgery in May. This time it will be with Dr. Marsh in St. Louis. We have been told by three different, unaffiliated doctors that Mitchell would not need a second surgery if the first surgeon had used the proper procedure. Of course, that particular surgeon is unqualified to do that procedure. Mitchell needed a complete cranial remodeling, not just a suture release. From what I have learned on the list server, those are two different things. Someone correct me, if I'm wrong. I would definitely recommend that your friend see a "super specialist"--someone that does this procedure often--not just a few times a year. If all goes well in his surgery, we have every expectation that Mitchell will lead as typical life as any other now 15 month old. He has just started walking--not an early walker, but not too late. He had several months of physical therapy. At four months old, he was unable to hold up his head. Everything now seems to be going very well. Of course, I worry about everything. His teachers at Children's Day Out (4 days a week) have assured me that he is right on track for his age. They feel like his intelligence is at least, if not above, his peers. We had a hydrocephalous (sp?) scare because the CT scan showed "mildly enlarged ventricles." So far, that has not become a problem. Sorry to be so long. Your friends have surgery before them. Once they get thru that, hopefully their medical problems will be behind them. Feel free to have them Email me.
Good luck, Resa ========================================================================= Date: Fri, 3 Apr 1998 23:07:40 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Copperhd87 <Copperhd87@AOL.COM> Subject: Re: At the risk of Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Raquel, Personally, I think you are a wonderful mom and think you shouldn't change a thing. It's too bad you can't go back and spoil your other three children. As I write, Mitchell is in our bed waiting for us to eventually come down there. He is 15 months old and has not spent one complete night in his crib. We both love having him there--not just for the convenience, but for the closeness and love that we share. Mitchell likes to snuggle up next to Mark's back. Oftentimes I hug him tight to my tummy just like a teddy bear. You do need to take the bottle away as soon as she finishes it in order to protect her teeth. Our daughter also slept with us until she was about two. She is now a perfectly normal 13 year old. I know this is a very controversial subject. My opinion is that you should do whatever is right for your family. It's a very personal thing--not something that your pediatrician should dictate rules about. Many cultures have the baby sleep with parents. From the things I have read, it is only recently that western culture has imposed this expectation upon families. Do all you can to enjoy your baby. She'll grow up someday--make the most of every moment.
Good Luck, Resa ========================================================================= Date: Fri, 3 Apr 1998 23:31:08 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: CoH 1862 <CoH1862@AOL.COM> Subject: Re: IQ Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Carol, My daughter Mallory also tests below her age. She has trouble in math. As far as writing, she does fine just slower in getting it done. She also has a high reading and spelling level, way above her age of 10. She went through speech and all that.
Diane Youngblood ========================================================================= Date: Sat, 4 Apr 1998 11:33:12 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Lisa McGahan <wmcgahan@IX.NETCOM.COM> Subject: Re: At the risk of... MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit
Raquel-, Well, you do not need scolding because there is no right or wrong way to raise any child when there house is full of live, which clearly seems to be your case. But, you do need to have some sanity in your life which i doubt you can have if you are getting no sleep, raising three other kids and working, WOW! Well, the only advice i can give you is that children are creatures of habit, and that goes for all children. Morgan (12 weeks old) is one of triplets, she is by far my fussiest baby and i often wonder if she has colic. she came home from the hospital after 4 weeks and it has taken us this long to get her to sleep in her crib for the night without crying her eyes out. she sleeps on one of those bobby's in her crib and i think she is more comfortable so #1 you can start by putting the car seat in her crib. or you can take her out and put her on a bobby or elevate her head in the crib - but in any case continue to feed her when she wakes so that she is not going cold turkey on all of her bad habits at once. #2 you cann slowly cut out each of her feeds. feed her at 8pm, then every three hours but not inbetween. then after a couple of days stretch it to four hours etc. pretty soon you will have cu out all the unneccesary feeds.
maybe i can be so rigid because i have three of them and there is no time for individualized special attention - if that gives you any strenght. i don't think morgan is any sadder because of it. and i know if morgan was born a singleton i am sure i would have her on my hip every second of the day. children learn quick and most importantly your daughter will probably be happier in the long run because she obviously is not getting a good nights sleep if she is waking up that much. good luck, my thoughts are with you - - lisa mcgahan
---------- > From: Jack and Raquel <jara1@BELLSOUTH.NET> > To: APERT@LISTSERV.AOL.COM > Subject: At the risk of... > Date: Friday, April 03, 1998 10:14 PM > > Hi everyone, > > I am going to write this e-mail at the risk of having you guys probably > tell us that we are just plain spoiling Nicole.....but here it goes > anyway... > > Keep in mind that Nicole is now 6 months old today...When she was about > two months of age she started with the sniffels, runny nose, etc. and of > course that made everything else worse because she also had colic. > Thank goodness the colic only lasted about 2-3 months but boy were those > long months. To get back to my story Nicki didn't sleep much during the > day she would take little weeee cat naps about 10 to 15 minutes long and > then with the sniffles it made it worse because she could hardly breath > through her nose. So one day I laid her in her carrier and she slept a > lot better, I guess being in the upright position helped her breathing. > Well to this day Nicki still sleeps in her carrier (all cushioned up of > course) on our bed with us, yes we have a king size bed. But the major > problem and the reason she still sleeps in her carrier is she wakes up > every two to two 1/2 hours a night. She goes to sleep at around 8:30 > then she'll probably wake up at 10:30, then 12:00 then 1:30 etc., etc., > etc., Now here is where the spoling continues, when she wakes up we > give her the bottle she takes a few swigs and she falls right back to > sleep and we have her on our bed because we just reach over to do this > so our sleep is not greatly interupted. But in reality it is interupted > because we really don't rest and haven't rested for a long time. I know > it's not good to give her the bottle like that because eventually it > could rot her teeth when she gets them. During the day she takes up to > two hour naps now with my sister who is her care taker while we are at > work, and of course she sleeps on her bellie in her crib (no carrier). > I guess what I am trying to say is yes she can sleep in her crib but > since she is so spoiled now and wakes up so frequently during the night > its easier for us to just slip a bottle in her mouth because she falls > right back to sleep as opposed to having to pick her up almost every > hour on the hour to settle her back to sleep. > > Our pediatrician said that after her surgery next month, we have to have > a long talk with him. Basically like that article I sent to everyone > about 7 things a disabled kid wants...well he said we have to treat her > like any other child she is no different and I guess that is going to > mean a lot of crying, you know let her cry herself back to sleep, do not > pick her up, do not feed her, etc., etc. and of course put her in her > crib. I feel horrible because sleeping in a carrier is restricting her > movement and I know that is not good. So I guess we are going to have > to buckle up and get strong with her to shake her out of this bad > habbit. (But we'll wait until after her surgery) May 7th is the > scheduled date so a bit after that we'll start. Who knows maybe her > stay at the hospital will help and she will get used to sleeping out of > her carrier during the night, wishfull thinking?? > > I'm sorry for this long e-mail I just felt guilty and felt the need to > share this with all of you. Please, comments and suggestions are highly > appreciated and yes you can scoled me, I will not get offended and no > Nicki is not my first child she is my fourth (you wouldn't know that by > the way I am acting) Again I apologize for the lengthy letter..... > > Waiting to hear from you all.... > > Raquel Miller > jara1@bellsouth.net ========================================================================= Date: Sat, 4 Apr 1998 01:12:32 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Thornq <Thornq@AOL.COM> Subject: Re: At the risk of... Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Raquel,
I have many opinions regarding this sleeping in the bed thing. Let me first start by telling you that Andrew (who is 19 months old now) is still sleeping in our bed. We unfortunately only have a double bed, so my husband sleeps on the couch. Not very good for the marriage I know. Anyways.....I felt the same way you do right now. I felt guilty and thought I was doing it all wrong, but let me tell you this, what ever works for your family is what is good for you. After Andrews surgeries I felt the need to snuggle him and comfort him. He had much anxiety after his surgeries and only slept in a crib for about two months total (what a waste of money). My sisters both have slept with their children. You shouldn't think just because that poem about children with disabilities says to let them be an individual or whatever that you can't do what you are doing. THAT'S PLAIN WRONG!!!!!! These kids have a tough time and a rough start, why shouldn't they be able to feel that extra bit of comfort. Andrew is finally going to be getting his own room, so he will be moving out of our bed very soon. Something my pediatrician said to me once is that in many countries, sleeping with your children is normal and not sleeping with them is unheard of.
Now for the otherside of the coin. Since Andrew has been sleeping in our bed for so long it has diminished my love life, interrupted my sleep, and given me back aches from getting kicked all the time. But I must confess, I actually do like having him by me. We have finally gotten Andrew to sleep through the night because I ended up just letting him cry it out (scream at times). Andrew had the bottle problem in the middle of the night. It is considered habit. If he is only taking a couple of sips of a bottle then it is definately comfort and not hunger. I know you are probably thinking, maybe he's hungry, but that isn't true. Many kids at that age sleep through the night. It is much easier to get rid of the bottle now then later. If you are going to start this then I would get rid of only one security at a time. First the bottle, then mommy. Andrew does still get his bottle to go to sleep, but that is it. He goes to sleep at about 8:00 and wakes up at 5:30 for a little drink and goes back to sleep. But I too was once waking up every two hours.
As for the breathing better in the carrier, you should be able to raise the head of the crib mattress to get the same effect. My sister did it on her crib because my nephew had terrible reflux. Just put blankets underneath and at the feet to keep from sliding down to the end of the bed. If your crib does not have many adjustments like mine, then you can always pile up blankets or something else to raise the head.
Please feel free to e-mail me directly once you start doing it, if you decide to. Do not think you are spoiling your baby just by making him feel comforted in time of need. You are not spoiling, you are loving. Also, do not feel guilt or shame, you are not a bad person for this.
Good luck with everything and I hope this helped.
Lynn Thornquist Thornq@aol.com ========================================================================= Date: Sat, 4 Apr 1998 01:18:52 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Thornq <Thornq@AOL.COM> Subject: Thank you!!! Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
I just wanted to thank everyone for their input on the sign language question. I think that I will try and teach Andrew some signs because it is extremely frustrated that I cannot understand him. He says "Ma" and I say "what" and then he babbles a couple of things to me and I just agree and answer him with something else. He does express what he wants very vividly, but maybe its just because I know him and when he grunts (as we like to call it) I tend to know exactly what he wants and get it for him.
Thank you again for all your responses, it gave me alot to think about.
Lynn Thornquist ========================================================================= Date: Sat, 4 Apr 1998 01:58:11 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Camous <Camous@AOL.COM> Subject: Re: Signing Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Carol- My son, Evan, also has a trach and a Passy Muir which he now toerates all day. He makes noises but no real words yet. How long did that take?? He had his cleft repaired in Dec and a rough year last year with surgeries and illness. We moved in Oct-Nov and are just getting restarted with therapy now. He makes sounds and can Baa-Baaa-Baaa but that's about it. Has a few signs and great nonverba;l communication.....waiting for the all important Mama and Dada (he'll probably say his sister's or nurse's name first...good thing my self esteem is no longer riding on these kind of issues ;)
Marianne ========================================================================= Date: Sat, 4 Apr 1998 02:01:59 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Camous <Camous@AOL.COM> Subject: Re: IQ Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Carol - Evan just had a Bailey test (it's more comprehensive than the Denver Developmental Assesment). I haven't gotten the formal report yet, but Evan did best on the social and cognitive areas. He's only 21 months so reading and writing are not part of the picture yet....but they seemed impressed with his problem-solving ability and tenacity. If they had a test for getting food on time or manipulating one's caregivers, he's come out off the charts!!! they mentioned that good social skills make up for a lot of other deficiencies in life.I guess I have to agree there!
Marianne ========================================================================= Date: Sat, 4 Apr 1998 02:11:14 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Camous <Camous@AOL.COM> Subject: Re: Signing and Kindergarten Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
In a message dated 98-04-03 11:28:43 EST, you write:
<< I worry that her fine motor skills will slow her down and frustrate her when it comes to printing. >> My eldest is in first grade and already has had writing assignments where she'd get extra credit for typing the assignment. Would that be an option? Seems like typing/keyboarding skills are going to be more important in her adult life than neat printing....but I come from a skewed perspective. Most physicians I've worked with have atrocious handwriting. I hear that one of the medical schools is instituting an course in legibility.
Marianne San Carlos, CA (cold and rainy....el Nino doesn't want to be taken for granted yet!) ========================================================================= Date: Sat, 4 Apr 1998 22:04:09 +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: Signing Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
Lynn
We used sign with Amy in the early days because she was a slow starter talking. Once she realised that she could communicate her wishes by moving her hand it wasn't long before she started using words instead. It still comes in handy when she is out of earshot or in a group and I want to know if she wants a drink or something to eat!
Studies with children with Down Syndrome have shown that spoken language begins sooner when accompanied by sign, as opposed to language alone.
Cheers, Ann NZ
At 11:04 PM 2/04/98 EST, you wrote: >Denise, > >One quick question and anyone else may answer if they feel like it. Why learn >sign if they are not deaf? Maybe that is a stereotypical thing to say, but I >don't get it. Andrew's OT uses some sign with Andrew and I think I would >rather him learn the appropriate words for things than the sign language. >Does anyone have any thoughts? > >Thanks! > >Lynn > > ========================================================================= Date: Sat, 4 Apr 1998 22:04:16 +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: Reading and Spoiling Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
Just wanted to share another step forward with Amy. At just over 7 years she has now moved into the 9.5-10yr reading grade!!! We are delighted. Not bad for a kid who never crawled, was "developmentally delayed", and was late walking and talking. We are very proud of our wee one.
Raquel - whatever works for you and your family is what is right, but you do need to keep an eye on your health due to your broken sleep. If you are concerned about keeping Nicole's head up when she is in the cot you could prop up the end of her cot with blocks - if you shape them to fit the legs and sit the bottom of the legs in the shape they won't fall out. Re teeth, it is important for children's first teeth to be healthy, just as it is important for their second. If you are wanting to wean her off the night-time comfort-bottle how about just putting water in it? That won't bother her teeth, is good for her, and she will probably soon stop waking up for cold water (what kid wants stuff that is good for them?) It certainly worked for Amy! My 2c worth.
Regards, Ann NZ ========================================================================= Date: Sat, 4 Apr 1998 22:14:31 +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: Studies Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
Last week I had to make some amendments to my last year's research paper for the Children's Literature course I am doing and rediscovered a paper I don't think I have shared with you. I think it provides support for why our children need surgery that others may consider "cosmetic" (third sentence in the conclusion).
Title: Stress and Facial Appearance Author: Christopher S. Thomas, MBBCh, MRCPsych, Department of Psychological Medicine, Wellington School of Medicine, New Zealand Pub: Stress Medicine, Vol.6: 299-304 (1990)
Summary: This article examines the relationship between abnormal facial appearance, body image and psychological functioning. It explores the differences between patients in whom abnormalities of facial appearance generate stress which leads to personality impairment and mental illness and patients with abnormal personalities and/or mental illness who complain that they have an abnormal facial appearance. The role of cosmetic surgery and other therapies in treating these different types of dissatisfaction with appearance is reviewed.
Conclusion: Patients who are distressed by their facial appearance usually request cosmetic surgery because they have an abnormal appearance or because they have a disturbance of their body image. Cosmetic surgery may be appropriate for disfigurement. Early correction of facial abnormalities, particularly if they are stigmatizing, may prevent impairment of personality development and subsequent mental ill-health. In those with an underlying body-image disturbance, the recognition of this is important and essential. Treatment should be directed towards any underlying mental illness or the relevant personality issues. Cosmetic surgery is not helpul in this group.
Regards, Ann NZ ========================================================================= Date: Sat, 4 Apr 1998 06:48:56 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: ETolson643 <ETolson643@AOL.COM> Subject: Re: Why sign? Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Lynn
When Tim was little he was having difficulty learning words. He knew what he wanted to say and was frustrated. He learned a few crucial signs to get him through that and then easily transferred to learning the words. We thought it provided a good transition to language.
Beth ========================================================================= Date: Sat, 4 Apr 1998 09:18:49 +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: At the risk of... In-Reply-To: <3525A57E.22D7@bellsouth.net> MIME-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7BIT
Raquel, Yes! You do have to do something about this bottle thing -- and about getting Nicki to sleep better so you can get some sleep. However, this does not necessarily mean a lot of crying if you act soon. Her problem is not that you've spoiled her, it's that you haven't taught her to soothe herself to sleep. I strongly recommend that you go to the library and check out Penelope Leach's book on infant and child care. There are wonderful chapters on sleep problems that can really be a big help. My first child got us up at night until he was 4.5 years old. With the techniques Penelope Leach recommends, my youngest was sleeping through the night at 2 months. You'll need to undo a bit of bad habit, but she definitely isn't in favor of long crying jags and her methods work.
Judy
> etc., Now here is where the spoiling continues, when she wakes up we > give her the bottle she takes a few swigs and she falls right back to > sleep and we have her on our bed because we just reach over to do this > so our sleep is not greatly interrupted. But in reality it is interrupted > because we really don't rest and haven't rested for a long time........
.......... > about 7 things a disabled kid wants...well he said we have to treat her > like any other child she is no different and I guess that is going to > mean a lot of crying, you know let her cry herself back to sleep, do not > pick her up, do not feed her, etc., etc. and of course put her in her > crib. ========================================================================= Date: Sat, 4 Apr 1998 09:52:26 +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: Sign Language In-Reply-To: <35256CFB.3D2A@erols.com> MIME-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7BIT
My oldest child was taught some sign language while he was receiving speech therapy in his early childhood intervention program. He had chronic hearing problems (now resolved) that resulted from chronic ear infections. He had severe language delay and was very prone to temper tantrums. Signing helped with language development -- and helped us and his teachers communicate with him until he could speak.
My middle son is dyslexic. He's had a terrible time learning to spell written words. We're studying sign language in place of a foreign language (I homeschool him). Sign is the 4th most commonly used language here in Maryland, so it's a logical choice. Fingerspelling words has helped him with his spelling, too.
Judy ========================================================================= Date: Sat, 4 Apr 1998 15:19:59 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jenngram <Jenngram@AOL.COM> Subject: Re: At the risk of... Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Raquel, Raquel, Raquel.....put that sweet little girl in her bed and let her CRY..now I am sure I sound like a menaie, but the Farber method really does work..where you just let them cry until they pass out..their good and tired so they sleep a while..and if shes eating enough during the day, just comfort her with a kiss..BUT do not let that baby out of the bed until morning..as long as nothing is wrong. I was and prob. still am a meanie, but sleep was a necessity in this house..if not sleep then a divorce was imenant, b/c I was a tru witch for a while
Jordan was colicky too, and slept in his infant seat for a while..then I bought this head elevator thing at The Baby Superstore ..its the width of the matress..and helps w/ his congestion..although that seemed to improve w/ his age more than anything else..a humidifier worked well also. Jordan ALSO disn't really nap..just cat-naps until he was about 5 mos. and would get soo crabby that I put him in his bed twice a day..and let him cry until he fell asleep..the longest was 4 minutes..he was tired, but wouldn't admit it. Now he sleeps from about 8 or 9 until 7 and takes 2 naps of varous lengths..I'm flexible w/ naps..20 mins. is fine if thats all he wants, but when its dark, he knows his behind isn't getting out of bed if theirs not a fire. it took about a week of letting him cry it out..each night got shorter..but it was worth it in the long run..esay for me to say though, b/c I don't have to get up and go to work...so I could be a zombie for a week and that was ok....
Hope it helps..be strong..tough love and all!!!!!! I know, I know...I'm a meanie!!!! But as a result of good rest..we have a lot of fun playing when hes up!!!! no resentment b/c I'd rather be sleeping!!!
Jenn(Tampa/St. Pete) ========================================================================= Date: Sat, 4 Apr 1998 15:32:21 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jenngram <Jenngram@AOL.COM> Subject: Re: Sign Language Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
I was talking to someone last night..yes we finally went out for some fun....and I was thinking what an advantage these kids have b/c it IS a second language..so in a sense all these little guys/girls are bilingual..or in some cases trilingual(is thata word???)..or is it multilingual???? whatever, I was kinnda thinking how it was weird to teach someone to sign if they could speak, but now I'm thinking how truely cool it is..I'm ready to sign (no pun intended) Jordan up already!!!!!
Jenn(Tampa/St. Pete)..the mean mom who lets he baby CRY!!!!hahahahha ========================================================================= Date: Sat, 4 Apr 1998 15:08:31 -0800 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Laurie Ann Bailey <jkb@ELPASO.NET> Subject: Re: At the risk of... MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Raquel,
It was a hard thing for us to make Jacob fall asleep on his own also. We did not have exactly the same situation you do but, it is still hard.
I spoiled Jake by rocking him to sleep every time he would wake up for a feeding. (This is when he was newborn and up. He is now 23 months old.) Well, when I got pregnant with our daughter, I realized we were going to have to break him of this habit. Although he was sleeping through the night, he "needed" me or my husband to rock him to sleep before we could put him in his crib. This would happen at nap time as well. Part of me did not want to give up the "special time" this was for us. I also realized that I was going to have a second child that would need "special time" too. So, about a month before Jordan was born, my husband and I started weaning him. It wasn't too difficult for me because I work alot of nights. So, Kevin had to deal with the crying more than I did. We stuck to our guns though and it took about 3 days to complete the process. Now we can put him in bed completely awake and he falls asleep on his own.
I hope this can help you. I remind myself that he is just like every other kid and we try not to give him special treatment in areas of discipline.
Laurie Bailey jkb@elpaso.net ========================================================================= Date: Sat, 4 Apr 1998 17:44:51 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: foster <foster@ICONTECH.COM> Subject: Dribbling Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
Has anyone else had trouble with excessive dribbling? Billy has always had some dribbling but in lately it is really bad. He gets soaked even when he wears a bib. He breathes thew he mouth alot so it stays open most of the time but it seems he has no control. He has never taken a bottle or a pacifier so he does not have the sucking reflex. It does not seem like teething even though he has no teeth as of yet.
Also he is having his thumbs done on the 22nd of March. He has hitchikers thumbs were the top of them are bent outward. The doctors feel that they need to be done first. They say it will be a two hour surgery. Have any of your children had this done first? They say they will be putting in pins to straighten them out. We are also having a sleep study because he seems to be having some problems breathing at night he seems to stop breathing for a few seconds which is fine but there has been times when he has stopped for as much as twelve or thirteen seconds. He is also making a noise that is sometimes different than his regular snoring and snorting. We just want to be sure everything is ok. Is the sleep study the same as the sleep study we did at home when we were checking to see if he was ready to come off of the oxygen? If so why is this study done in the hospital?
Well, hope everyone is doing well and we continue to pray for BJ and everyone else.
We took Billy to his first basketball game last week.One of his sisters was playing and he totally loved it. The only problem was he kept thinking everyone was clapping for him because we always clap for him when he does something new or good. He has been a little under the weather because of a cold and bioth of his ears were infected, but was able to go to the Easter Party at Early Intervention which was great fun and both him and Kaila enjoyed. I hope that you all are able to attend these parties with your little ones if possible they are great and even I enjoy them myself.
Bye for now Karen Foster(Scranton Pa) ========================================================================= Date: Sat, 4 Apr 1998 22:22:25 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jack and Raquel <jara1@BELLSOUTH.NET> Subject: Thank you... MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Dear Friends..
I want to thank all of you that commented on our dilema and gave us great ideas, for instance, Ann, the water idea is great we will start tonight. As for letting her cry, Jenn can't start right now...I don't want you guys to feel sorry for us but I did not tell you the whole story.
I forgot to mention that our 3 1/2 year old daughter Erica also sleeps in the bed with us. But thats not all my parents are temporarily living with us (no they do not sleep in the same bed with us) due to the fact that my dad is very old 83 and my mom who is 16 years younger became very depressed since my dad is now bed-ridden and living alone with him taking care of him by herself, yes with some help nurses, etc. do come by but still they were very lonely. So the only thing we could think of doing was bringing them to live with us for the time being. So they are in Erica and Nicole's room (yeah right like it was really being used) any way Jenn if we let Nicole cry it out at this time there would be a house full of very unhappy people not to mention our other two kids Michelle and Steven. You know the houses now a days with those cathedral ceilings and tiled floors the echo is unbelievable. Anyway we are concidering buying the wedge to put under the mattress to lift it up. Because the sleeping in her carrier is what really bothers me, because of the lack of room and position her body is always in. So I really want to get her out of there shortly, not to mention the fact that she is growing out of it, either we get her out soon or we'll have to special order a larger one or something (just kidding).
Oh, my husband Jack wanted me to mention that he also wakes up at night to feed Nicki etc., that it is not just me, no kidding aside he is a great help parrallel to me.
Judy, could you give me the name of Penelope Leach's book, because I looked her up in the internet and she has several out there, is it titled infant and child care?
Well enough for now, I think I better sign off before this qualifies for a short story....
Thanks for your imputs...
Raquel Miller jara1@bellsouth.net ========================================================================= Date: Sat, 4 Apr 1998 22:24:53 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jack and Raquel <jara1@BELLSOUTH.NET> Subject: Day light savings time.... MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Remember, it's daylight savings time...turn those clocks forward....
Good night all....(one less hour of sleep, just what I needed)
Raquel..... ========================================================================= Date: Sat, 4 Apr 1998 22:24:41 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: LUVS2WRTE <LUVS2WRTE@AOL.COM> Subject: Re: Day light savings time.... Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
It's too bad we don't turn BACK clocks more instead of forward. Sometimes too me it seems there's never enough time, or never caught up.
-Andrea ========================================================================= Date: Sun, 5 Apr 1998 22:50:19 +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: Dribbling Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
Hi Karen
>Has anyone else had trouble with excessive dribbling?
Amy was an enthusiastic dribbler and unfortunately most of her early photos show her wearing a bib. She did eventually grow out of it - can't remember how old she was, sorry, but she wasn't dribbling when she started school at 5yrs so it must have been a year or so before then. She had a dummy and I don't know if that made it better or worse.
When it came time for her to drink from a cup we used a plastic one that had a lid and a straw, the straw being a good way for her to learn to suck and control fluid in her mouth. To teach her to suck on the straw we used a small carton of fruit juice which had a straw, and gently squeezed on the carton until the juice came up the straw into her mouth. It took a few goes but she eventually got the idea. I believe learning to drink through a straw was a major factor in her learning to control her dribbling.
Even now she uses the plastic cup with lid and straw for during the night - if she wakes up thirsty she just reaches up and helps herself to a drink (of water) without pouring it all over herself, then goes back to sleep. I must admit she only learned to do that herself when I got thoroughly fed up with being woken up 2-3 times a night to give it to her - I told her in no uncertain terms that I needed my sleep and she was perfectly capable of getting the drink herself. After that she reached for the drink herself! (Ogre Mother strikes again!)
If Billy is breathing through his mouth he probably isn't swallowing much, and maybe he needs regular gentle reminders to swallow. I am sure the inside shape of their mouths doesn't help. Even now I have to remind Amy to swallow when she is reading aloud, otherwise she talks through a mouth half full of fluid and tends to dribble - I suggest she swallows at the end of each paragraph, and she is learning to do that. Self discipline plays a big part.
Regards Ann NZ ========================================================================= Date: Sun, 5 Apr 1998 11:13:27 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: TheMorenos <TheMorenos@AOL.COM> Subject: Re: Day light savings time.... Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
AMEN ========================================================================= Date: Sun, 5 Apr 1998 18:15:22 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Thornq <Thornq@AOL.COM> Subject: Re: Thank you... Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Raquel,
I will again reiterate what I said and what a few other people said, it is whatever works for your family. Just to let you know, the crying does only last for a couple of days. Do you lie down with her when she takes naps? If so, that is where I started. I started putting Andrew in for naps without me before I even attempted the middle of the night bottles. That way you ease into it, and the rest of the family will be awake so there won't be any disturbances to their sleep. You can move the crib into your room for now, that is where Andrew's crib was (didn't stay long though). Maybe you could move the other kids into the family room to sleep for awhile (just a couple of nights). You and your husband would lose sleep for awhile, but it is worth it in the long run. Don't take me wrong, I don't really see that much problem with sleeping with your kids. But like I said before, it kills the intimacy.
Talk to you later.
Lynn ========================================================================= Date: Sun, 5 Apr 1998 15:29:13 -0700 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Robyn Johnston <robyn@ORDATA.COM> Subject: Re: At the risk of... Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
Dear Raquel,
>habbit. (But we'll wait until after her surgery) May 7th is the >scheduled date so a bit after that we'll start. Who knows maybe her >stay at the hospital will help and she will get used to sleeping out of >her carrier during the night, wishfull thinking??
Just another thought that you might consider. We used Brenna's baby carrier in the hospital for her recovery. OF course it will need to be fairly padded to keep it comfy for both her head and bottom. We used a synthetic sheepskin - wool like mat. Actually the hospital had them. I received a tip from a friend about requesting it. You might want to wait until after her surgery to wean her of her car seat. IT was nice, because it was familiar, and it inclined better than the hospital's crib. This is an advantage when these kiddo's are so swollen after surgery. Gravity can help decease the swelling.
Regarding the bottle issue, Nicole may find the bottle comforting while recovering from her surgery as well. Due to concerns about her teeth, we comverted Brenna to a bottle of water at nightime too - (after her surgery). Brenna is a mouth breather, so we leave it in the corner of her crib at night so she can take sips if her mouth gets too dry. Heck, I have a glass of water by my bed for the same reason! She objected the first few nights, but soon realized that a bottle of water was better than no bottle at all - which was the other choice ;-) She didn't like it at first, but now she has no problem with it.
Good luck and hang in there. Robyn Johnston ========================================================================= Date: Sun, 5 Apr 1998 22:37:30 +0000 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "J. G. Lindamood" <chanan8@JUNO.COM>
Hello Family!
*Fair warning... this is a long post. Things are looking up and I wanted to share with the world!*
Just wanted to share some news..I had an interview this week with a local distributer of grocery ads and such. I would be in the sales department. It would not pay much, and would be part time, so no benefits either. but it sounds interesting and there is a great opportunity to "move up" as the company is owned by Cox Publishing, a well known company here in Ohio. I would in a sense be "taking a risk" hoping to someday to "move up". I am projecting a little to advanced, they have not offered me the job yet.
This week also was the beginning of school for me! I am taking a course called Therapeutic Recreation. It's required by the state of Ohio to work in a retirement community in the activities department. This is a road far from the communications degree I already have, but it would mean I would be helping people which is where my true heart is. The class is every other Saturday, which compliments my current employment nicely. This week we learned a lot of medical shorthand. I was amazed at the amount of shortcuts there are! I am really excited about this opportunity!
Also, I met a guy today! OOOHHH WEEEE! It is a really hilarious story of how we met. It was a beautiful day here and my first day to myself in a LONG time. I had a bunch of errands to run after church and I knew I wanted to go somewhere to enjoy the weather. My errands took me past a Toys R Us and I couldn't resist. Good thing, because they are hiring! I completed an application and bought some fancy bubble blowers and off to the park (complete with a body of water) I went! Well, here I am, a 33 year old sitting in the middle of the park with my bubbles, having a ball! Yonder comes a man, with a little child and a unruly dog. The dog got to me first, and I lost all control of my vocal abilities not to mention my mothers warning about not talking to strangers. I asked the man (Mike) what kind of dog it was and that led into a 1/2 hour conversation and the child (Stephanie) taking over the bubbles! He invited me to church and I told him I was already going. However.. there is a Saturday night service at another church he as been attending for the social aspect. Guess where I am going Saturday?! If ANYTHING comes of this, I will be thrilled to have him as a friend. WHY? He ACCEPTED ME! I really believe he was an honest person and wasn't out to harm me. He saw me (and my childish side) and still stopped to talk. I got on the phone tonight and invited a friend to go with me Saturday. She's as excited as I am!
One more thing and I will stop with my rambling. With the rotten situation at my current place of employment, I was developing low self esteem and a bad attitude. The last couple of days, especially getting back into school, has really helped. I keep telling myself "this isn't permanent". And I am not to be blaming myself for the actions of others. But it is up to me to make myself happy. It's people like Mike AND ALL OF YOU who have proved to me that the world is not filled with hateful people.
Joanne, in beatiful skies, Ohio
_____________________________________________________________________ You don't need to buy Internet access to use free Internet e-mail. Get completely free e-mail from Juno at http://www.juno.com Or call Juno at (800) 654-JUNO [654-5866] ========================================================================= Date: Sun, 5 Apr 1998 23:10:59 -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: Early Intervention MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit
Hello Everyone! I hope you are all doing well. I was going back through some Emails we received when we first joined the listserver (I was still in a daze about what was going on with our little girl). I noticed several of you mentioned Early Intervention. Can someone or several explain what this is? When you should start? Who to contact regarding signing up? ETC, ETC? I thought Carmen and I could possibly benefit from such a program (that is from what I understand about it).
Thanks,
Robin Hill (Newnan, Ga) CARMENRAE@PRODIGY.NET ========================================================================= Date: Sun, 5 Apr 1998 23:05:40 -0400 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: ROBIN L HILL <CARMENRAE@PRODIGY.NET> MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit
Joanne,
Congratulations on "things looking up!" Your Email made my night! I have been in a bit of a slump myself for the past couple of days and your good news gave me hope! Oh, Mike sounds great and by the way I love the name (my husband shares that same name! HEE HEE) Goodbye and Good luck!
Robin Hill (Newnan, GA) CARMENRAE@PRODIGY.NET
---------- > From: J. G. Lindamood <chanan8@JUNO.COM> > To: APERT@LISTSERV.AOL.COM > Subject: > Date: Sunday, April 05, 1998 6:37 PM > > Hello Family! > > *Fair warning... this is a long post. Things are looking up and I wanted > to share with the world!* > > Just wanted to share some news..I had an interview this week with a local > distributer of grocery ads and such. I would be in the sales department. > It would not pay much, and would be part time, so no benefits either. > but it sounds interesting and there is a great opportunity to "move up" > as the company is owned by Cox Publishing, a well known company here in > Ohio. I would in a sense be "taking a risk" hoping to someday to "move > up". I am projecting a little to advanced, they have not offered me the > job yet. > > This week also was the beginning of school for me! I am taking a course > called Therapeutic Recreation. It's required by the state of Ohio to work > in a retirement community in the activities department. This is a road > far from the communications degree I already have, but it would mean I > would be helping people which is where my true heart is. The class is > every other Saturday, which compliments my current employment nicely. > This week we learned a lot of medical shorthand. I was amazed at the > amount of shortcuts there are! I am really excited about this > opportunity! > > Also, I met a guy today! OOOHHH WEEEE! It is a really hilarious story > of how we met. It was a beautiful day here and my first day to myself in > a LONG time. I had a bunch of errands to run after church and I knew I > wanted to go somewhere to enjoy the weather. My errands took me past a > Toys R Us and I couldn't resist. Good thing, because they are hiring! I > completed an application and bought some fancy bubble blowers and off to > the park (complete with a body of water) I went! Well, here I am, a 33 > year old sitting in the middle of the park with my bubbles, having a > ball! Yonder comes a man, with a little child and a unruly dog. The dog > got to me first, and I lost all control of my vocal abilities not to > mention my mothers warning about not talking to strangers. I asked the > man (Mike) what kind of dog it was and that led into a 1/2 hour > conversation and the child (Stephanie) taking over the bubbles! He > invited me to church and I told him I was already going. However.. there > is a Saturday night service at another church he as been attending for > the social aspect. Guess where I am going Saturday?! If ANYTHING comes > of this, I will be thrilled to have him as a friend. WHY? He ACCEPTED > ME! I really believe he was an honest person and wasn't out to harm me. > He saw me (and my childish side) and still stopped to talk. I got on the > phone tonight and invited a friend to go with me Saturday. She's as > excited as I am! > > One more thing and I will stop with my rambling. With the rotten > situation at my current place of employment, I was developing low self > esteem and a bad attitude. The last couple of days, especially getting > back into school, has really helped. I keep telling myself "this isn't > permanent". And I am not to be blaming myself for the actions of others. > But it is up to me to make myself happy. It's people like Mike AND ALL > OF YOU who have proved to me that the world is not filled with hateful > people. > > > Joanne, in beatiful skies, Ohio > > > > > _____________________________________________________________________ > You don't need to buy Internet access to use free Internet e-mail. > Get completely free e-mail from Juno at http://www.juno.com > Or call Juno at (800) 654-JUNO [654-5866] ========================================================================= Date: Sun, 5 Apr 1998 22:24:24 -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: Judy Amerman <jamerman@UTI.COM> MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit
Joanne,
WAY TO GO GIRL
Have a great time!
Amazing what a bottle of bubbles can do
Judy ========================================================================= Date: Mon, 6 Apr 1998 00:42:56 -0400 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Lisa McGahan <wmcgahan@IX.NETCOM.COM> Subject: Re: Early Intervention MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit
robin- i just called the early intervention program here in nj. from my understanding each county in each state has one. it is federally funded i think. anyway, you can call your county office and they will give you the number or you can ask at the hospital carme rae was born at, that is where i got the number from. they have physical therapists, occupational therapists, speech therapists, etc. to help children that need helping. my county is sending someone out to evaluate morgan this month and then she will set up an appropriate program. my pediatricia ndid say that she wanted to talk to the physical therapist that would be working with morgan because she wanted to explain some things about apert's syndrome and make sure that the therapist did know all of the limitations as she has had other apert patients (yes my pediatrician has 3 other patients with apert's) where the therapist almost broke the children's arms because she did not understand the range of motion problems most of our kids have with their shoulders. anyway, that is all i know given i have just started myself.
if all else fails you can call the early intervention program up here in nj and ask how to get in touch with your own in ga - the number is (973) 857-4745. lisa
---------- > From: ROBIN L HILL <CARMENRAE@PRODIGY.NET> > To: APERT@LISTSERV.AOL.COM > Subject: Early Intervention > Date: Sunday, April 05, 1998 11:10 PM > > Hello Everyone! I hope you are all doing well. I was going back through > some Emails we received when we first joined the listserver (I was still in > a daze about what was going on with our little girl). I noticed several of > you mentioned Early Intervention. Can someone or several explain what this > is? When you should start? Who to contact regarding signing up? ETC, > ETC? I thought Carmen and I could possibly benefit from such a program > (that is from what I understand about it). > > Thanks, > > Robin Hill (Newnan, Ga) > CARMENRAE@PRODIGY.NET ========================================================================= Date: Mon, 6 Apr 1998 00:19:26 -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: Lisa McGahan <wmcgahan@IX.NETCOM.COM> Subject: Re: G Tube MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit
Jenn- Thanks for the message on the g-tube. She is gaining weight nicely and i think her nose is opening up as her head grows. another question - did Jordan cry a lot during his early months? is he now six months? is he a happy baby? i cannot figure out why morgan crys all the time. she definitely got into the bad habit of screaming herself to sleep while she was in the hospital (for 4 weeks) she has now been home for 8 weeks and it really has not gotten much better. she is quiet if she is sucking on a pacifier but she cannot hold it in her mouth and i do not want her to become so dependent on it that she has to have it held in her mouth all day for her (don't forget she is a triplet and i have a just turned 3 year old). my other babies do not cry like she does and they are already smiling and cooing and happy entertaining themselves. morgan has no interest in entertaining herself. she wants to be held or be asleep. it is really heartaching and depressin for me. i wonder if i should hire a nanny or nurse to simply take care of her/
anyway, any words of advice?
thanks! lisa ---------- > From: Jenngram <Jenngram@AOL.COM> > To: APERT@LISTSERV.AOL.COM > Subject: Re: G Tube > Date: Friday, March 27, 1998 10:27 AM > > Lisa, > > did the doctors check for reflux? Just curious b/c we had a problem w/ Jordan > spitting up and not gaining weight and they tested him..did a ph probe at > about 3 weeks and thats what it was. They were about to put in a g-tube and my > husband and I said "no"..lets watch him for a few days and see how he does on > the meds...sure enough he started gaining...he was 6 lbs at birth and now at 6 > mos is 18 lbs.....but he didn't have a problem w/ breathing through his nose > all the time..only if its stuffy. Now I don't know if the spitting up is > related to swallowing air or just associated w/ food in the tummy. JUst > thought I'd ask, b/c it may be that simple of a solution to weight gain > problems. I know if Jordans reflux meds need upping, or he has something > physical going on..surgery, teething..then he can't keep any food down > regardless of his meds...and the docs attribute it to reflux..it gets worse > when the body is under stress. > > Let mw know if you have any questions > > Jenn(Tampa/St. Pete) ========================================================================= Date: Mon, 6 Apr 1998 15:30:41 +1000 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Carol & Jason <carolh@HOTKEY.NET.AU> Subject: Re: At the risk of... MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Raquel
Dont feel so bad my daughter is nearly 3 and spends several nights with us. She hardly ever slept when she was a newborn and my husband and I took shifts I did days and he did nights. She only had little short cat naps during the day. I thought this was unbelievable that a baby could go for so long on little sleep because we were falling apart.
I have been to a sleep clinic with her twice once at 8mnths and another at 1 1/2 years but I had to put her to bed there and let her cry. I tried to tell them that If I let her cry she blocks up cant breathe and then wont sleep so I am no better of. I must admit it does work but I cant do that to her and break my heat like that watching her get so distressed and then start to vomit from being so upset.
The only way we have been able to survive which I know is the wrong way but have some sort of sanity is we take her to bed with us and watch television wait till she falls asleep and then put her in her own bed. She still wakes some nights for weeks at a time so I pick her up and take her to our bed. I know this is absoloutly terrible but as I work this is the only way we can survive this.
I am now pregnant and dont know what we are going to do I will have to do something because we have no room for 4 in our bed and I know I will need sleep with the night feeds.
I had Ashleigh checked for sleep apnea in case this was the problem because I know she sometimes pauses with her breathing and most of the time she has a blocked nose so I thought this may have been the cause but the study came back without any problems which is great but doesn't solve the problems of why????? does she wake.
I wonder if alot of these children have had sleeping problems?? So does this make me a really terrible mum or a mum that just does this for peace and sanity? The only way I know how at the moment without having a breakdown. I also know I spoil Ashleigh something terrible but I cant help it I never did this with my first but I just cant help it with her becaause she has to go through so much in her life and I try not to distress her with other things. I am very naughty people keep telling me but I say to them they are not in my shoes they dont understand. Very few do.
Dont feel so bad
Carol (Down Under Australia)
Jack and Raquel wrote:
> Hi everyone, > > I am going to write this e-mail at the risk of having you guys probably > tell us that we are just plain spoiling Nicole.....but here it goes > anyway... > > Keep in mind that Nicole is now 6 months old today...When she was about > two months of age she started with the sniffels, runny nose, etc. and of > course that made everything else worse because she also had colic. > Thank goodness the colic only lasted about 2-3 months but boy were those > long months. To get back to my story Nicki didn't sleep much during the > day she would take little weeee cat naps about 10 to 15 minutes long and > then with the sniffles it made it worse because she could hardly breath > through her nose. So one day I laid her in her carrier and she slept a > lot better, I guess being in the upright position helped her breathing. > Well to this day Nicki still sleeps in her carrier (all cushioned up of > course) on our bed with us, yes we have a king size bed. But the major > problem and the reason she still sleeps in her carrier is she wakes up > every two to two 1/2 hours a night. She goes to sleep at around 8:30 > then she'll probably wake up at 10:30, then 12:00 then 1:30 etc., etc., > etc., Now here is where the spoling continues, when she wakes up we > give her the bottle she takes a few swigs and she falls right back to > sleep and we have her on our bed because we just reach over to do this > so our sleep is not greatly interupted. But in reality it is interupted > because we really don't rest and haven't rested for a long time. I know > it's not good to give her the bottle like that because eventually it > could rot her teeth when she gets them. During the day she takes up to > two hour naps now with my sister who is her care taker while we are at > work, and of course she sleeps on her bellie in her crib (no carrier). > I guess what I am trying to say is yes she can sleep in her crib but > since she is so spoiled now and wakes up so frequently during the night > its easier for us to just slip a bottle in her mouth because she falls > right back to sleep as opposed to having to pick her up almost every > hour on the hour to settle her back to sleep. > > Our pediatrician said that after her surgery next month, we have to have > a long talk with him. Basically like that article I sent to everyone > about 7 things a disabled kid wants...well he said we have to treat her > like any other child she is no different and I guess that is going to > mean a lot of crying, you know let her cry herself back to sleep, do not > pick her up, do not feed her, etc., etc. and of course put her in her > crib. I feel horrible because sleeping in a carrier is restricting her > movement and I know that is not good. So I guess we are going to have > to buckle up and get strong with her to shake her out of this bad > habbit. (But we'll wait until after her surgery) May 7th is the > scheduled date so a bit after that we'll start. Who knows maybe her > stay at the hospital will help and she will get used to sleeping out of > her carrier during the night, wishfull thinking?? > > I'm sorry for this long e-mail I just felt guilty and felt the need to > share this with all of you. Please, comments and suggestions are highly > appreciated and yes you can scoled me, I will not get offended and no > Nicki is not my first child she is my fourth (you wouldn't know that by > the way I am acting) Again I apologize for the lengthy letter..... > > Waiting to hear from you all.... > > Raquel Miller > jara1@bellsouth.net ====================================