========================================================================= Date: Mon, 29 Jun 1998 00:34:50 -0700 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Robyn Johnston <robyn@ORDATA.COM> Subject: Re: Piano Playing Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
Hi Jenny,
Hope you had fun on your vacation. My husband is traveling in your neck of the woods this week so watch out for stray golf balls! He is on a business trip to Hilton Head S.C. You know the kind of business trip where they play golf all day! :-)
I haven't send out pictures to the last 10 or so people on the list. I will try to get those sent out soon. I need to get more reprints first! They will be coming though! WE have received so many wonderful pictures, thanks everybody. This is a great idea!
Hugs, RObyn J. Eugene, OR - sunny & in mid 80's
At 12:14 PM 6/28/98 EDT, you wrote: >Hello everyone!! >I am back from Vacation ... > >Just to let you know, I play trumpet... and i play a mean right handed >piano one key at a time!!! ... The trumpet has Three valves for three >fingers!! perfect!! > > Have received pictures.. will be sending mine along!! >Jenny in Savannah Ga! > ========================================================================= Date: Mon, 29 Jun 1998 22:47:03 +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: HELP!!!!! Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
Hi Lynn
I'm not surprised you're at your wits end!
No experience with the aggressive hitting, sorry. Amy used to hit herself in fun, which I never did understand and never found amusing, but I think most of her peers went through a similar stage at around the same time - somewhat older than 22 months though. I have a vague recollection that she also had a brief stage of hitting Howard and me, but as I say it was brief - Mum doesn't like being hit and if Mum doesn't hold you, you can't hit her!
Having no experience with other children, in your shoes I would be making a phone call to the psychologist attached to the team that "looks after" us. It might sound a drastic thing to do, but I would rather hear that "it is a normal stage for the age so don't worry about it" then have the worries you are obviously experiencing. Alternatively if there is no psychologist, your paediatrician (our "paediatricians" are physicians especially trained in the care of children, so I am assuming the same terminology applies in the US) may have some guidance.
And as the worst-case-scenario check I would be contacting the appropriate surgeon re checking the possibility of there being any pressure on his skull that may be causing headaches or discomfort. If he can't talk, then it may be he is trying to tell you something in his own way.
Re signing - if Andrew doesn't want to do it, maybe it's best not to expect it of him at this stage. If you routinely use the signs when you speak, the signs will quickly come to mean something to him, and when he is ready he will imitate you. He obviously has strong intrinsic motivation, hopefully he will eventually choose to use it in the way you desire! And what's the bet his first sign is M for McDonalds!
That's a thought - how about making a communication board where he can point to the picture of whatever it is he is wanting. Cut the pictures out of magazines, draw them yourself, or use photos. The speech therapist probably won't approve but heck, if the child uses it they will learn the pleasure of communication, and that will hopefully be the step into the next stage of signing, which will hopefully lead into words and then full communication.
Hang in there. "This too will pass." Ann NZ ========================================================================= Date: Mon, 29 Jun 1998 07:57:02 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jennifer Graham <Jenngram@AOL.COM> Subject: Re: Yes its me... Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Raquel,
Fingers are crossedn and prayers are being said that this time things are a "go". Jordan seems to ALWAYS develop a stuffy/runny nose the morning of surgery. So far, blood work is always ok..but we always have to do it before surgery so we don't get there at 6 am and have to go home....prob. more so Dr. Ruas doesn't have to get there at 7am and go home!!!!!!!!!!! It takes the WBC a while to go down..and sometimes it elevates w/ tissue repair..(ie if her ears are clear, but healing)....Jordans WBC spiked 4 days after his cranial for that reason. They did every test and culture known to man and all were fine. it only lasted about 36 hrs. Hopefully, by Wed. Nicoles will be back down!!!!
Good Luck!!!! Jenn(Tampa/St. Pete) ========================================================================= Date: Mon, 29 Jun 1998 10:18:27 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: Belinda Vicars <NephiRose@AOL.COM> Subject: Re: HELP!!!!! (slapping) Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
I sympathize with you, Lynn. My Sarah is 22 months also. I cannot believe the change from the soft, sweet baby she used to be! Bedtimes are simply not her favorite time of the day. We used to do naps but she threw such a fit that I decided to cut them out thinking that by night time she would be so tired she'd go willingly to bed. Not so! So I can't win either way. I think it is a stage. At least, I hope so. I also sign it to her. She happily mimics me but I think that is about as far as it goes. Just because she signs night-night doesn't mean she wants to. Let me know if you discover any new tricks on this issue.
Sarah doesn't slap herself on the head. But every since she was a little girl she loved to rub her head. Not with her hand but rub her head against the carpet, the wall, the carseat, you name it. Needless to say the back of her head is always snarled. She also likes to (hard to describe)..stand on her head with her hands on the floor and her feet on the floor and walk that way. Again, she rubs her head. Maybe it is a sensory thing like with the slapping. None of my kids did the rubbing thing, although my eldest did the head banging thing for a while but he grew out of it. Hope this helps some.
belinda ========================================================================= Date: Mon, 29 Jun 1998 10:41:09 -0400 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Colleen Jones <coljones@PTDPROLOG.NET> Subject: Head rubbing(was help) MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit
Jacob (2 yrs today) also rubs his head against the carpet. He did it awhile ago and then stopped but has started to do so again. It does seem he rubs mostly when he seems hot or tired. He only started this after his forehead advancement so my theory is that something inside irritates when he is hot or tired. Just a guess. We have not experienced the hitting at all thank goodness (at least not yet). Jacob also rubs his ears a lot especially when tired. I have had them checked numerous times and tubes are fine so I think it is just a behavioral thing too.Hope everyone has a nice day. Colleen Jones and gang coljones@ptdprolog.net ========================================================================= Date: Mon, 29 Jun 1998 11:34:26 -0400 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: ROBIN L HILL <CARMENRAE@PRODIGY.NET> Subject: Re: Carmen Rae MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit
Hello Raquel!
Carmen Rae is doing great! It is only two weeks post op and you really wouldn't know she had surgery! Well, except for the stitches, although, they are slowing falling out! She is still a little messed up with her sleeping schedule, but keep in mind her sleeping schedule used to be 8:00p.m. until 8:00a.m. She is sleeping about 8 to 10 hours at a time (at night) and every couple of days wakes up at 4:00 a.m. for a bottle. REALLY CAN'T COMPLAIN! Oh, and she looks great! I can't believe the difference.
We will continue to keep you guys in our thoughts and prayers. We can only imagine the stress you are under. Just remember, God knows when the time is right, and then it will happen.
Good luck and God Bless!
Robin Hill
P.S. It was great to hear from you again. Was kinda missing you, although I completely understand. I never told you I took a look at your family on Nicole's page. JUST BEAUTIFUL! I guess I didn't realize you had two other little ones. Take Care!
---------- > From: Jack and Raquel <jara1@BELLSOUTH.NET> > To: APERT@LISTSERV.AOL.COM > Subject: Carmen Rae > Date: Sunday, June 28, 1998 5:53 PM > > Hi Robin, > > Just wondering how is Carmen Rae doing after her cranial surgery. I > hope she is doing well. How did she do, how are her days and night. > Just wondering since hopefully we'll be in that boat... > > Raquel... ========================================================================= Date: Mon, 29 Jun 1998 11:16:02 -0400 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: ROBIN L HILL <CARMENRAE@PRODIGY.NET> Subject: Re: surgery MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit
So glad to hear Jordan is doing well. We are now preparing for these hand surgeries that will be coming up soon for Carmen Rae. We will continue to keep you guys in our thoughts and prayers. Isn't it great to be home rather than the hospital? I think EVERYONE is much happier!
Robin Hill
---------- > From: Jennifer Graham <Jenngram@AOL.COM> > To: APERT@LISTSERV.AOL.COM > Subject: Re: surgery > Date: Saturday, June 27, 1998 8:27 AM > > Morning to all ...just a quick note to let everyone know Jordan is home and > doing well. He did so well after surgery that they sent us home after a 5 hr. > observation post-op. By the time he was up playing w/ his toys they figured > there was no need to keep him. He spent a glorious first night of recovery in > his own home and has done MUCH better than the first surgery. Guess he, like > us, knew kinnda, what was going on. The splint isn't bothering him as much as > the 1st time..and he basically slept through the night.minus getting stuck in > the corner of his bed and needinf assistance and getting up for a snack and > Motrin at about 4am...I can't complain w/ that!! Hopefully he'll continue on > in this fashion!!!! > > Thanks for the thoughts and prayers. Joe and I were really nervous about this > surgery...had weird feelings..not sure why..just glad they proved to be > nothing more than a bad feeling. > > Thanks again..hope everyone is doing well > > Jenn(Tampa/St. Pete) ========================================================================= Date: Mon, 29 Jun 1998 11:28:10 -0400 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: ROBIN L HILL <CARMENRAE@PRODIGY.NET> Subject: Re: Michelle Bradley MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit
Hello and WELCOME Bradley family. We are Mike and Robin Hill from Newnan, Georgia (about 30 miles southwest of Atlanta). Our precious baby girl, Carmen Rae, was born with Apert Syndrome on January 18, 1998. She has had two surgeries so far. One for a shunt and one cranial surgery. We love this extended family and we know you will too! WELCOME again.
---------- > From: Ryan Bradley <Bradleys_r@COMPUSERVE.COM> > To: APERT@LISTSERV.AOL.COM > Subject: Michelle Bradley > Date: Saturday, June 27, 1998 2:05 PM > > Hello Again: > > Whew! We finally read all that mail, you all sure can type. > We will be sending pictures to Don soon, be patient. > > Michelle's D.O.B. was January 20, 1991. > > Michelle is a very busy soon to be 2nd grader, she has lots of friends and > likes to play,play,play. She enjoys riding her bike, jumping rope, her > skip-it, hoola-hoop and swimming (to name a few). She is a very happy child > (lots of love helps). > > So far all of Michelle's school experiences have been very positive. The > teachers and her peers have been very supportive, we are amazed at how > open-minded children can be. Our concerns are centered around Michelle's > lapses in attention, following instructions and the future writing load. > Her writing is up to par if she takes her time(neatness), a laptop computer > has been mentioned. > > Michelle has had 2 cranial, 3 hand and it has been 3 years since her last > surgery for strabismus (eye crossing). We have been busy with OT, PT and > Speech therapies. This summer however, Michelle needs to have approx 8 > teeth removed to make room for her permanent teeth. Overcrowding is a big > problem as is the worry of teeth becoming impacted. > > Enough typing for now, everyone take care. > > Ryan and Martha Bradley > > The Bradleys > 710 Old Oak Circle > Algonquin, IL 60102-3133 > > Bradleys_r@compuserve.com ========================================================================= Date: Mon, 29 Jun 1998 17:44:40 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Tim Graves <timg@BELLSOUTH.NET> Organization: home Subject: pictures MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
I haven't got all of NIcks pictures sent out yet.. waiting for more reprints.. will have them out soon... thanks for all the ones we have received so far... Carol Graves ========================================================================= Date: Mon, 29 Jun 1998 18:49:54 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Ize <ize@TACOMA.CEATLABS.OKSTATE.EDU> Subject: Vitamin Therapy MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Hello everyone!
I was trying to find out about VITAMIN THERAPY and I found a girl's home page that has down syndrome and she is on this treatment. Her parents say that the girl loves to read. When she was 2 years old, she was reading about 20 words. When she was 3 years old, she was reading about 50 words. Isn't it wounderful? I also found out her doctor's e-mail address and I wrote to him and asked if this treatment would work for kids with Aperts. You can read the docto's feedback below. Felipe is going to see his neurosurgeon this thursday to have his follow-up and I am going to ask him more about that and them I'll let you know. Here is the home page just in case you are interested... http://mypage.ihost.com/TheCastellanos/
Any feedback would be appreciate! The Ize's.
>>I have several patients with Apert syndrome but none on TNI specifically though I >>have designed a >>form of nutritional therapy for them that is vastly different from the one for DS. >>Lawrence G. >>Leichtman, M.D., FAAP, FACMG >>Genetics and Disabilities Diagnostic Care Center >>933 First Colonial Road Suite 109 >>Virginia Beach, VA 23454 >>757-425-1969 >>leicht@exis.net >>http://www.exis.net/leichtman >>http://www.tri21.org ========================================================================= Date: Mon, 29 Jun 1998 21:01:39 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Diane Youngblood <CoH1862@AOL.COM> Subject: Re: Bad hair daze.... Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
My daughter Mallory has the same problem. Try Selsun Blue. We still have to wash hair every day. Sorry I'm not much help. That is what the dermatologist suggested.
Diane ========================================================================= Date: Mon, 29 Jun 1998 21:16:19 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Resa and Mark Pace <Copperhd87@AOL.COM> Subject: Persistant runny nose Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
When Mitchell had a runny nose for about a month, our pediatrician suspected a sinus infection. He was in for a regular checkup, and I just mentioned that it had been running for about a month. I know some kids whose nose seems to run all the time, so I never thought anything might be wrong. She put him on antibiotics and it disappeared. Good luck on the (maybe) surgery. Mitchell came down with pneumonia a week before his last surgery, but was OK just in the nick of time. I hope everything goes well.
Resa ========================================================================= Date: Mon, 29 Jun 1998 21:34:52 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Diane Youngblood <CoH1862@AOL.COM> Subject: Re: numbing patches Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
EMLA Cream ========================================================================= Date: Mon, 29 Jun 1998 22:02:01 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Tony & Sandy Deakins <TDeakins1@AOL.COM> Subject: Re: Piano Playing Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Jenny- Our daughter, Casey, is 11 and doesn't do too badly at the piano. Your suggestion for a trumpet seems like a good idea. Casey wants to play in a band and this might be the ticket. Question is: Can she blow? Aperts' kids tend to have constrained breathing. Casey is one of those although certainly not severe.
How old are you now and how old were you when you started to play the trumpet?
We live in St. Augustine. Tony and Sandy Deakins ========================================================================= Date: Mon, 29 Jun 1998 22:10:28 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Janine Krebs <Yonstein@AOL.COM> Subject: Re: HELP!!!!! Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Dear Lynn:
Sorry you are having such a hard time. I do know that it is very frustrating. My son Nicholas (almost 4 non-Aperts) was and is still a very impatient child. He gets frustrated very easily and also doesn't like to be told no. At around the 2 year age he definitely was in his terrible two's. He like Andrew would bang his head on the floor. He would have such tantrums that I would move him to the carpeted area and let him work it out there. If I tried to hug him or touch him to calm him down he would flail his arms around at me.
As for the headbutting of your husband, I really can't help with that area. I would put him where he wasn't near anyone that he could do that to. I don't know if it's just an age thing or not. My son grew out of it but every once in a while when he is extremely frustrated or upset, he will drop down on the floor in a tantrum now. It is still very difficult to deal with.
Andrew not being able to speak well is probably making it even more difficult for you and him. I haven't reached that area with Emily yet so I can't offer any advice there either.
Hope it gets better soon. I am eager to hear the advice also.
Best wishes,
Janine ========================================================================= Date: Mon, 29 Jun 1998 22:12:32 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Janine Krebs <Yonstein@AOL.COM> Subject: Re: Nicole Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Raquel:
Just wanted to wish you well this week. Hope Nicole is feeling ok and that the surgery goes as scheduled. I will keep my fingers crossed for you all.
Janine ========================================================================= Date: Mon, 29 Jun 1998 22:19:53 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Janine Krebs <Yonstein@AOL.COM> Subject: Vitamin Therapy Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Dear Claudia:
I am trying to retrive the page you gave and am not getting it. I have it as:
mypage.ihost.com/TheCastellanos/
If this is wrong, could you post it again for me please. I also have been doing some research on vitamin therapy and am interested in the info.
Thanks again,
Janine Krebs ========================================================================= Date: Mon, 29 Jun 1998 21:30:17 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Ize <ize@TACOMA.CEATLABS.OKSTATE.EDU> Subject: Re: Vitamin Therapy MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Janine Krebs wrote: > > Dear Claudia: > > I am trying to retrive the page you gave and am not getting it. I have it as: > > mypage.ihost.com/TheCastellanos/ > > If this is wrong, could you post it again for me please. I also have been > doing some research on vitamin therapy and am interested in the info. > > Thanks again, > > Janine Krebs
This is the right address. I forgot to put the http://. Try now.
http://mypage.ihost.com/TheCastellanos/
Please, send me any additional information that you find in vitamin therapy.
Thank you,
Claudia Ize. ========================================================================= Date: Tue, 30 Jun 1998 00:52:34 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Lynn Thornquist <Thornq@AOL.COM> Subject: Re: HELP!!!!! (slapping) Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Belinda,
I was definately laughing when you told me that Sarah does that "bear walk". Andrew does the same thing, but I think he is just trying to see the world upside down. It is definately a new prospective on things.
Just thought I would tell you that.
Lynn ========================================================================= Date: Tue, 30 Jun 1998 00:54:41 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Lynn Thornquist <Thornq@AOL.COM> Subject: Re: Head rubbing(was help) Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Colleen,
Andrew also does alot of the ear rubbing thing and I as well have had his ears checked. Actually we took him to see the pediatrician last Thursday about a little bump on his arm (it turned out to be a bug bite). I can be so neurotic sometimes. I think the ear rubbing is behavioral as well.
Lynn ========================================================================= Date: Tue, 30 Jun 1998 00:57:14 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Lynn Thornquist <Thornq@AOL.COM> Subject: Help (revised)!!! Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
To everyone,
I just want everyone to know that it is not so much me that Andrew hits, it is my husband. And the hitting of us really only occurs when it is bedtime and I have him give daddy a kiss. Mostly it is just himself that he hits and it is always on his head. I just wanted to clarify that hitting predicament. And he only hits when I say no or won't let him have something and take it away.
Lynn ========================================================================= Date: Mon, 29 Jun 1998 23:44:03 -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: Help (revised)!!! Mime-Version: 1.0 Content-Type: text/enriched; charset="us-ascii"
Lynn,
Just a thought, since this is mostly directed at daddy during your nightime routine, possibly change the routine slightly. At bedtime when you let him give daddy a kiss, maybe giving daddy some 'one on one' time with Andrew for a little while before the kiss might give him the attention he seems to be looking for.
WE went through a similar situation with Brenna when she was about 20 - 22 months. Hmmmm, they all seem to be at the same age!!! ;-) Except, Daddy would come home right at dinner time. Brenna would throw a fit and not want anything to do with him (not quite a tantrum but close) and not eat anything. Well, we started letting Erin play with her (without mommy) for about 15 minutes to 1/2 hour and then eat supper. It seemed to work for us. We <italic>think</italic> she was jealous of our conversation right when Erin got home.
Another thought, I know it may sound silly, but have you (or your husband) just tried to hold Andrew when these spells occur? Maybe he just wants some reassurance or your security. I find that when Brenna is heading for out of control, just holding her tightly lets her know that I am there for her and that things are ok. She usually calms down quickly.
Good luck, this must be tough.
Hugs, Robyn J.
>I just want everyone to know that it is not so much me that Andrew hits, it is
>my husband. And the hitting of us really only occurs when it is bedtime and I
>have him give daddy a kiss. Mostly it is just himself that he hits and it is
>always on his head. I just wanted to clarify that hitting predicament. And
>he only hits when I say no or won't let him have something and take it away.
>
>Lynn
> ========================================================================= Date: Tue, 30 Jun 1998 17:32:05 +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 & Frank Hamzsak <carolh@HOTKEY.NET.AU> Subject: Re: Help MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Lyn
Read you message and was having a giggle to myself not that I found it funny at all but because my daughter Ashleigh is so similar in some ways she is now 3 years old and because I have spoilt her in a terrible way (My fault of course and now paying for it) when I dont let her have her way she hits herself when she gets angry and also hits me and will also kick me if she can. She has also taken to throwing things when she gets upset.
I feel that with Ashleigh this is just a toddler thing and am hoping that it will pass sooner than later. She does have a bad temper but then again so do I.
Carol (Freezing Australia) ========================================================================= Date: Tue, 30 Jun 1998 08:23:49 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jenny Brown <Firefli007@AOL.COM> Subject: Re: Piano Playing Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Dear Sandy and Tony...
I am 31 32 in November... Have been playing the trumpet since 5th grade - 11 yrs old. You are right about the breathing thing. I didn't have any problems although at night I think i have sleep apnea. This is an incredible network because I am finding out more about me than i ever thought possible!! The secret to playing in the band was that I had a very supportive teacher. I played all the way through high school and was lead trumpet player in senior year.... It was good beacuse it gave me a group to hang out with and a status in the school... very good for self esteem etc!! Hope all is well with everyone's surgeries. Ya'' ll are all in my thoughts and prayers!
Jenny in Hot and Humid Savannah Ga. ========================================================================= Date: Tue, 30 Jun 1998 10:01:04 -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: Penny Halverson <phalvers@U.WASHINGTON.EDU> Subject: Re: Piano Playing In-Reply-To: <199806250404.VAA16939@mxu2.u.washington.edu> MIME-Version: 1.0 Content-Type: TEXT/PLAIN; charset=US-ASCII
Hi Bob
Regarding to Krista having fused elbows, I can see why since I too have fused elbows and unable to turn my wrists. I had tried playing the organ when I was a kid and never play again since then. Just last year after my hubby Eric bought the huge piano keyboard with some computerized sequencers and equalizers sound functions. He had encouraged me to take up piano lessons. I took it last year, and one man in whose we know did a very good job in helping me with my fused elbows to better maneuver and able to play the piano a little differently then most people do. It was fun and still does. I still occasionally play with the basic melodies. My hubby Eric is very good in playing piano and still perform for special events while he makes a little extra money in doing it. Hope it helps.
Hugs, Penny :-)
mailto:phalvers@u.washington.edu mailto:hwy2heaven@kendra.com mailto:penny@crouzon.org http://www.crouzon.org/ ========================================================================= Date: Tue, 30 Jun 1998 21:19:07 -0400 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jack and Raquel <jara1@BELLSOUTH.NET> Subject: Nicki's Surgery MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Hi everyone,
Thanks for all the best wishes regarding Nicki's surgery on Thrusday. We have an appointment with her pediatrician tomorrow at 8am to see if her white count has continued to come down. If her count is in the normal range the surgery will probably be a go. If not.....well...reschedule again.
We will let everyone know the outcome. Thanks again for your thoughts.
Jack Miller jara1@bellsouth.net ========================================================================= Date: Wed, 1 Jul 1998 13:18:55 +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: Piano Playing Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
Well done Jenny - I have hopes that Amy will eventually take an interest in the piano, because we have one, but I never thought of the trumpet (I've not even bothered considering the viola and clarinet hidden in the bottom of the cupboard!). Thank you for being available as a role model for our little ones.
>The secret to playing in the band was that I had a very supportive teacher.
Having teachers with the commitment to help our children reach their dreams is so very important for any child, and I just hope we always have those for our Amy.
>played all the way through high school and was lead trumpet player in senior >year.... It was good beacuse it gave me a group to hang out with and a status >in the school... very good for self esteem etc!!
Apart from the self esteem and the sense of belonging engendered by belonging to the school band/orchestra, it also gives a safe place for the children to go during lunchbreaks. I won't say morning tea, because I understand from the American teachers we had visiting our school this morning (9 of them) that your schools don't have such a break. I don't know how they survive the morning without the coffee!!
Regards Ann NZ On a wet and windy wintery Wednesday - but still not cold. Only two days until the holidays!!!!!!!! ========================================================================= Date: Tue, 30 Jun 1998 21:27:31 -0400 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jack and Raquel <jara1@BELLSOUTH.NET> Subject: Tantrums (acting up) MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Regarding the tantrums, our experience is (with all our children) that when either parent is with the kids they play, fight among each other, watch TV, etc. However, when the missing parent comes home, and both parents are now in the house, the children grow horns and tails.
I guess that they are fighting for attention (or just don't want mom and dad to talk to each other). Just my experience/interpretation.
Jack Miller jara1@bellsouth.net ========================================================================= Date: Tue, 30 Jun 1998 21:36:56 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "<George Siebert>" <GSieb91515@AOL.COM> Subject: Re: Tantrums (acting up) Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Rachel- I think you are right on with this one. I have noticed this with my 9 yr. old since she was a toddler. It hasn't really stopped. If someone comes home from work and we even start to talk a little, Melissa will talk to us at the same time. Jonathan doesn't seem to really care if we engage in conversation without him at this point. He does however, seem to get a lot of attention as soon as walk in the door. Probably more than we give each other. I really think kids just want attention all the time.
Brenda ========================================================================= Date: Tue, 30 Jun 1998 21:39:51 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "<George Siebert>" <GSieb91515@AOL.COM> Subject: Re: surgery Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
I don't know if I already sent this but just found it in my outgoing flash mail. Sorry it's late--
Way to go Jordan! Glad to hear everything went well and mom and dad can breathe a little easier for awhile.
HAPPY BELATED BIRTHDAY TO EMILY! We are a day late and I'm sorry. Hope you had a great day celebrating.
Karen--I know how you must feel losing such an integral part of Billy's therapy. I was devastated when our first OT left after just a few months. We liked her so much and we haven't had one like her since. I don't think there is much you can do to get her back except express your disappointment and let them know that they are doing the children a disservice. Good luck
Best wishes to everyone!
Brenda Houston ========================================================================= Date: Tue, 30 Jun 1998 21:48:03 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "<George Siebert>" <GSieb91515@AOL.COM> Subject: MISC. Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Laurie-
Thanks so much for the spreadsheet. I will try to fill in some of the blanks that I know of and resend it. Jonathan's birthday is 12/6/96. I noticed that some of the birthdays that were posted early on were not included. I'll see what I can do.
Ann- Thanks so much for resending the poems. I love reading these encouraging writings and hope that Jonathan will too some day.
Raquel and Jack--Good luck this week. Hope all goes well at the doctors.
Happy Birthday on Thursday to Kris. Hope you are continuing to recover nicely and we look forward to meeting you on the 5th at Sherry's.
Brenda ========================================================================= Date: Tue, 30 Jun 1998 21:52:54 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "<George Siebert>" <GSieb91515@AOL.COM> Subject: Re: surgery Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Well I really screwed this up. I just realized Emily's birthday isn't until July 26th not June so we weren't late after all. I also addressed a message to Rachel that should have read Jack or Raquel. I apologize. It's been a really rough day so please excuse any other screw ups I may have made.
Thanks for understanding.
Brenda