========================================================================= Date: Sun, 21 Jun 1998 22:20:30 -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: shoulders MIME-version: 1.0 Content-type: text/plain; charset="us-ascii"
I know that DAryl has always had limited range in his shoulders. It has gotten better now that he is two. I accept that he will probably never be able to play aggresive volleyball, but he could be one of the best setters!!(If you know the terms of volleyball) I have noticed that DAryl's shoulders have improved greatly over the past couple of years with aggresive Physical therapy. He used to have only 20% range and now he is at about 60-70%. I don't see it causing him much inconvinience. Some of our older children and adults could let us know if it has been much of a problem for them. Good luck.
Hope everyone is doing well. Good luck to all upcoming surgeries and those who have come home safely.
Jenn, I wish you luck on Jordon's upcoming surgery. I will be thinking of you.
God Bless!
Denise Graham ========================================================================= Date: Sun, 21 Jun 1998 22:11:11 -1000 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "Joana H. Magno, M.D." <magnomd@ALOHA.NET> Subject: Re: Donald's Surgery and Anaesthesiologists MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Hey, wait a minute. Let's not slam the anesthesiologists too easily here!! Admittedly, I do have a few anesthesiologist friends, but the following views are strictly mine.
If you look at the original posting, the problem was not that of anesthesia in the first place, but with problems with bleeding from the initial incision. This is not the first time I know that there has been problems with excessive surgical bleeding. The coagulation factors are checked before surgery so that the surgeons can anticipate any problems ahead. Now, in repeat operations more often than primary surgeries, there is frequently more bleeding. Sometimes, you cannot continue the surgery because of the bleeding problems. This is not usually a fault of the surgeon or of the anesthesiologist. It is a good thing that they did not continue surgery, and that this problem did not come up later on in a long surgical procedure when it could have been more of a problem for the child.
Now to the issue of the endotracheal tube being too large and that that was the reason that there was a prolonged stay in the ICU. Often times, tissues swell in response to problems such as may occur with excessive bleeding, and the requirement for fluid and blood products.
I don't want to come across as critical, but there certainly is another side to the story. Certainly, I understand and share the concerns about anesthesiologists in that we frequently have long-lasting relationships with the surgeons that operate on our kids, but that we only get to see the anesthesiologists shortly before surgery. Obviously, you are very fortunate if you get the same anesthesiologist twice, particularly in many of the teaching hospitals.
It is important to appreciate that almost always, the anesthesiologist assigned to a big craniofacial case is familiar with the kinds of problems to anticipate in such kids, by first hand experience with this type of surgery. When you discuss surgery with your surgeon, it is not inappropriate to discuss the anesthesiologist and their experience, and you should be able to discuss these issues with the anesthesiologist directly.
Finally, just remember that the anesthesiologist is just as much of the team that gets your child thru the surgery as any of the other physicians involved. Often, they are never there after a day or two post-operatively, and may not get the gratitude that they really deserve.
Hoping that Donald is back to his usual self and that when surgery is rescheduled, that all will go well.
Joana Magno
Howard & Ann wrote: > > Hi Gary > > Thanks for the update on Donald. What a ghastly experience for you all, and how frustrating and disheartening. > > This ties in with my theory that it isn't so much the surgeons we have to worry about (assuming they are good at what they do of course!), it is the anaesthesiologists - and in New Zealand we usually don't get to see them until the day of the operation, so we don't even know who they are, what their level of skill is, or what sort of person they are. At least we do get the chance to learn that with the surgeons. > > In the light of your experience (and no doubt that of a few others), maybe there needs to be a move towards making the anaesthesiologists have a more up-front role for the families. Or maybe that is just another "battle" we really don't have the energy for!! > > All the best for a more satisfying experience next time around. > > Regards > Ann > NZ > > At 12:34 AM 20/06/98 -0400, you wrote: > >Sorry that we got in touch with the Apert's list and then vanished. Donald > >had surgery on June 9 and nothing was successful. He spent 4 days in ICU > >and another 4 in the hospital for nothing. The midface advancement could > >not be done because Donald lost too much blood from the initial incision. > >The anesthesiologists intubated him with too large a tube so his throat > >swelled and he couldn't be taken off the respirator for several days. > >There's a reason for everything. I guess it wasn't time for the surgery. > > > >Donald's b-day is 7-13-91 for the birthday list if it's not too late. > >p8896@alltel.net > > > > ========================================================================= Date: Mon, 22 Jun 1998 07:39:24 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jennifer Graham <Jenngram@AOL.COM> Subject: Re: shoulders Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
I know we work quite a bit w/ Jordan and his upper body flexibility. Hes had x-rays and the gammut of diagnostic testing and there is nothing "wrong" w/ his ball in socket (rotator cuff) or shoulder themselves...BUT he is VERY tight, therefore doesn't like having his arms up over his head. Prior to his hadn surgery we had really worked w/ him on stretching a few times a day and he'd gotten much better..letting us do the whole "Jordan is soooooo big" routine w/ him. Now, he refuses and really struggles w/ us..never crys, just tenses up and fights the movement. So we stop and try again. hes quite stubborn, so every now and then I get a good stretch out of him...same at OT....if we get him really relaxed. on the ball or in the swing we can get him to relax enough to be streched. Its slow going, but by being persistant we have seen improvement. Like any of us and exercise...ya gotta do it regularly to see results. I don't think is quite able to grasp THAT yet!!!!
Jenn (Tampa/St. Pete) ========================================================================= Date: Mon, 22 Jun 1998 07:44:49 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jennifer Graham <Jenngram@AOL.COM> Subject: Re: Donald's Surgery and Anaesthesiologists Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Sorry to hear about Donald...and hope hes recovering nicely. Like Ann, I too leave for the waiting room w/ a good or bad feeling based on my meeting w/ the anesthiologist. I know Jordans doctors very well, and trust them...but its the anesthiologist whose got control over the 'important" things and lord help the staff if I were to ever feel uncomfortable w/ him/her. So far we've been lucky. heres hoping that luck follows us Friday!!!
Jenn(Tampa/ St. Pete) ========================================================================= Date: Mon, 22 Jun 1998 07:12:43 -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: "Horning, Bob D (MN14)" <Horning_Bob@HTC.HONEYWELL.COM> Subject: This is a test MIME-Version: 1.0 Content-Type: text/plain
My email server is being changed and I am experiencing some hiccups with the listserver. Just testing.
Bob ========================================================================= Date: Mon, 22 Jun 1998 20:34:43 -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: Elizabeth de Silva <lizsilva@SRV1.TELCONET.NET> MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Sorry to hear that Donald surgery had so many ups and downs... but as you said "there's a reason for everything". I hope he is doing better. We just have to have a little patience... his time will come.
Keep up
Elizabeth
Gary Puleio wrote:
> Sorry that we got in touch with the Apert's list and then vanished. > Donald > had surgery on June 9 and nothing was successful. He spent 4 days in > ICU > and another 4 in the hospital for nothing. The midface advancement > could > not be done because Donald lost too much blood from the initial > incision. > The anesthesiologists intubated him with too large a tube so his > throat > swelled and he couldn't be taken off the respirator for several days. > There's a reason for everything. I guess it wasn't time for the > surgery. > > Donald's b-day is 7-13-91 for the birthday list if it's not too late. > p8896@alltel.net ========================================================================= Date: Mon, 22 Jun 1998 11:03:27 -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: Carbide Tech <ruth@CARBIDETECH.COM> Subject: Kris' Birthday MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit
Good Morning to all!
I hope everyone had a nice weekend- And a be-lated Father's Day to all you daddies out there.
I am so sorry to have written Kris' birthday and not mentioned which Kris it was!
Kris Contreras will be 15!! On July 2, (1983)
She is all excited about being 15! We have decided to postpone her "quinceanera" (her 15 y/o debuntante-sort off) until next year. Mainly because of this last surgery she had. We did not want to plan anything until this was over and done with. So here we go a-planning. I wish I could invite all of you! Of course, you all are welcome to come, I will keep you posted!
Adios!
Ruth Contreras in HOT AND HUMID- HOUSTON ========================================================================= Date: Mon, 22 Jun 1998 12:30:22 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: Andrea Gartner <LUVS2WRTE@AOL.COM> Subject: Re: shoulders Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Volleyball never gave me any major problems. In fact it's one of my favorite sports, right next to basketball. The only problem I have in that is serving. I don't throw it up in the air and hit it. I leave the ball in my palm and smack it with the other. It actually goes over the net sometimes! :<). But, everyone is different.
-Andrea ========================================================================= Date: Mon, 22 Jun 1998 13:32:52 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: Marianne Camous <Camous@AOL.COM> Subject: Re: Donald's Surgery and Anaesthesiologists, pictures, life Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
In a message dated 6/22/1998 1:03:48 AM Pacific Daylight Time, magnomd@ALOHA.NET writes:
<< Certainly, I understand and share the concerns about anesthesiologists in that we frequently have long-lasting relationships with the surgeons that operate on our kids, but that we only get to see the anesthesiologists shortly before surgery. Obviously, you are very fortunate if you get the same anesthesiologist twice, particularly in many of the teaching hospitals.
It is important to appreciate that almost always, the anesthesiologist assigned to a big craniofacial case is familiar with the kinds of problems to anticipate in such kids, by first hand experience with this type of surgery. >>
Another point to consider- the Et tube sizing may have been trickier than anticipated. Aperts kids, in general, have narrower pharyngeal airways than the norm. If the anesthesiologist involved did not have much experience with craniofacial syndromes, this would be more understandable. In the long run, better intubated longer than expected than not intubated in time or extubated too soon. If an error occurs, better in favor of a protected airway- something I keep reminding myself when I get frustrated with the limitations Evan has due to his trach. Airway comes first!
One other point to mention is that in some institutions, you can request a particular anesthesiologist or a pre-op visit prior to the day of surgery. If roadblocks are put up due to "scheduling" ask to speak to the chief of the department and explain your concerns. Usually the surgeon can request a particular anesthesiologist for a case. I remember Christine Clark saying that after a few of Michelle's surgeries, she makes sure to request an anesthesiologist who has pediatric training. In teaching hospitals, I have made it a point to speak to the attending anesthesiologist in advance and express my preferences about pre-ops, etc prior to the case. Usually, they are very accomodating. I would not hesitate to request a change or postpone if I had a real problem.
I have heard of another case where a midface was aborted partway through due to excessive bleeding. The blood supply to the area is abundant and I'd be more comfortable with a surgeon who stopped rather than keep going and over- transfusing. It is very hard for the family but better for the child. They call medicine and art and a science....often the most important thing is judgement in the "gray areas", more than experience or technical skill. Often there are no right or wrong answers. That is what makes it expecially hard for us as families and "frequent fliers"
Sorry to be so late getting our pictures out- they go in the mail today. Haven't even have time to keep up with my email now that summer vacation is upon us. Hope all are doing well and enjoying the crazy summer weather!
Marianne in foggy San Carlos, CA ========================================================================= Date: Mon, 22 Jun 1998 13:44:21 -0400 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Don Sears <dsears@SCRS.STATE.SC.US> Subject: FW: Aperts Syndrome MIME-Version: 1.0 Content-Type: text/plain
Paul is not subscribed to the listserv. If you wish to reply, please do so directly.
> -----Original Message----- > From: Paul E. Glass [SMTP:drummer@gatecity.com] > Sent: Sunday, June 14, 1998 12:03 PM > To: catndon@apert.org > Subject: Aperts Syndrome > > Hello: > > My name is Paul Glass. I am sending this email on behalf of a good > friend. Her name is Linda Baum. She has Aprets Syndrome. However I > came > across this page doing "research" for her mother. I was truly stunned > and amazed that there isn't all that much information on the 'net to > answer her questions. > > Originally talking to Mary (Linda's mother) we had "come to the > conclusion" that there weren't many children and young adults in the > world with Aprets. To my surprise there were many more than we > thought. > Although most of the pictures and bio's were all of small children. > > Here is the clincher (and the reason I am writing this email). Linda > Baum is 30 years old and doing well. Is it possible (I can not locate > this information nor verify it) that she is worlds oldest "survivor" > of > Aprets? > > Mary and Linda have been through it all; the surgeries, visits, > specialists, etc... They are truly special, caring, and strong people. > In fact (another reason as to why I am writing here) is that they feel > with their experiences, durations, and trials that they would be able > to > help others who have questions "first hand". > > Mary asked me to send a message to the "masses" in that she is > available > to answer any and all questions you may have. She gave me permission > to > list her information below: > > Mary Baum (Mother of Linda Baum) > 1102 Morgan Street > Keokuk, IA USA 52632 > Phone: 319-524-5149 > > Please be advised that we live in the CENTRAL TIME ZONE. Calls can be > accepted most of the time throughout the day but please be courtious > about calling in the late evening hours. > > I just hope that she can be a breath of fresh air for all others. > > Please forward this to your list of friends. It seems that you have > far > greater connections than I will ever have. > > > Take care and God bless each and every one of you. > > > Paul E. Glass ========================================================================= Date: Mon, 22 Jun 1998 15:26:54 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: Ted Finch & Jeanne McDermott <TFinch10@AOL.COM> Subject: Re: APERT Digest - 20 Jun 1998 to 21 Jun 1998 (#1998-118) Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Re: shoulders Nate is seven now and he does have restricted movement in the shoulder due to the skeletal structure but we (and he) barely know it. In fact, we keep forgetting that it's there. Ann, I'm a great believer in 'use it or lose it' too. Nate does chin ups, gripping the bar with his wrists. I suspect that the increased strength in the pecs, biceps, triceps and back muscles (lats?) compensate AND protect him from injury that might happen because of his limited range of motion. We can pick him up by the arms because he is strong enough to keep his arms bent, thus keeping stress off the shoulder socket. Regardless of how it all works, it is nice for anyone to keep up muscular strength. Best, Jeanne in Boston ========================================================================= Date: Mon, 22 Jun 1998 20:35:25 -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: Believe it or Not!!! MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Hi all....
Well believe it or not, Nicole's cranial surgery was cancelled again for the third time. We thought third time would be the charm, but we were wrong....and someone forgot to tell Nicki. She did though get tubes in her ears which is what is believed to be the cause of the white blood cells being so high. She did great and so far so good, the anestheologist checked her airway passage while she was under and he told us it looked good, no obstructions. So hopefully when she does have her cranial that should work out o.k.
I do apologize for not getting back to you guys sooner, I guess I just wasn't up to it. We are feeling better and know that this is Gods answer to our prayers and perhaps the tubes in the ears were more urgent at this point than her cranial. The surgery is now re-scheduled again for the fourth time for July 2nd, next week of course hoping that by then she doesn't catch a cold because now our 3 year old is starting with the sniffels and sort of dry cough. But again we have left it in Gods hands.
I hope everyone is well, I will try and catch up on all the e-mails tomorrow, because I'm a little bit tired right now and Nicki is calling for mommie because she wants to go beddie by...
Talk to you all soon....
Raquel Miller in very, very hot, sunny and in much need of rain South Florida..... ========================================================================= Date: Mon, 22 Jun 1998 20:51:33 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: Believe it or Not!!! Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Oh Raquel...you poor thing!! I am sooo sorry..hopefully this next go round will be the clincher...we'll be saying more prayers...perhaps those prayers will need to be a bit more forceful and directive than in the past!!!!
Hang in there Jenn (Tampa/St. Pete...hopefully we will not be engulfed in flames before we get some rain..seems all of Fla. is on fire form the panhandle to Gainsville!!!!) ========================================================================= Date: Mon, 22 Jun 1998 21:20:05 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "<George Siebert>" <GSieb91515@AOL.COM> Subject: Re: Surgery update Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Christine-
I am glad to hear you have lot's of help with you now during your recovery and we pray that you get good news from the bone scan. You have an incredible spirit that I know will get you through this (not to mention your uncanny humor). Not too many people can make you laugh when you are feeling sad. You will stay in our prayers and let us know how you are doing when you can.
Love, The Sieberts ========================================================================= Date: Mon, 22 Jun 1998 21:26:59 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "<George Siebert>" <GSieb91515@AOL.COM> Subject: Re: shoulders Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Karen,
Jonathan has the same difficulty with his shoulders. We were told that he has 90% rotation. We are due to go back to the ortho. and I'm curious to see if his range of motion is still the same. We try in therapy to encourage Jonathan to reach up when handing him toys. I do know you need to be careful when playing because their arms can come out of the sockets easily if not careful. I think the limited range of motion in the shoulders is fairly common with apert syndrome.
Brenda ========================================================================= Date: Mon, 22 Jun 1998 21:48:22 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: "<George Siebert>" <GSieb91515@AOL.COM> Subject: Re: Birthday list/Being Home Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Robin- So glad to hear that Carmen Rae is home and doing well.
We are so sorry to hear that Nicole's surgery has been rescheduled again. How frustrating but it sounds like things are getting better. We will be thinking of you. Staying healthy is the hardest thing to do when you are really trying.
Good luck Jordan (and mom and dad) on the 26th. You will be in our prayers.
We are happy to hear from Marjorie and that BJ is continuing to improve. Keep up your strength.
Hope all those wonderful dads had a great day with their beautiful children.
Brenda ========================================================================= Date: Tue, 23 Jun 1998 14:22:59 +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: Donald's Surgery and Anaesthesiologists Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
Hi Joanne,
>Admittedly, I do have a few anesthesiologist friends, but the >following views are strictly mine.
thanks for responding with your views - unless we have specialised training in these areas that is all we CAN give, and what I write are just that, my views based on my experience and I certainly have no training in anaesthesiology or surgery!
The coagulation >factors are checked before surgery so that the surgeons can anticipate >any problems ahead.
Pleased to hear that - hopefully they do the same thing here. I must ask next time (if Amy ever agrees to have any more operations!)
Now, in repeat operations more often than >primary surgeries, there is frequently more bleeding.
Any idea why that should occur?
Sometimes, you >cannot continue the surgery because of the bleeding problems. This is >not usually a fault of the surgeon or of the anesthesiologist. It is a >good thing that they did not continue surgery,
YES!!
>Now to the issue of the endotracheal tube being too large and that >that was the reason that there was a prolonged stay in the ICU. Often >times, tissues swell in response to problems such as may occur with >excessive bleeding, and the requirement for fluid and blood products.
Valid point - interesting.
>I don't want to come across as critical, but there certainly is another >side to the story.
Not taken as critical, I value your views, experience and willingness to share.
>When you discuss surgery with your surgeon, it >is not inappropriate to discuss the anesthesiologist and their >experience,
I have never thought of discussing this with the surgeon!!
>Finally, just remember that the anesthesiologist is just as much of the >team that gets your child thru the surgery as any of the other >physicians involved. Often, they are never there after a day or two >post-operatively, and may not get the gratitude that they really >deserve.
The anaesthetist always visits us prior to the surgery because in law they have to explain to us what is going to happen and get our signature to authorise the procedure to take place. My concern is that this is the first we see of them, we know nothing about them, and only when Amy has had operations at close intervals has it ever been the same person.
In most cases the anaesthetist has visited Amy either the same day or the day after to see how she is getting on and to let us know how the operation went for them. We have certainly appreciated this.
Don't get me wrong, I am not getting at anaesthetists, but they are in most cases the unknown human factor.
Regards Ann NZ ========================================================================= Date: Mon, 22 Jun 1998 22:41:50 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Frank & Annette Contrino <contrino@BUFFNET.NET> Subject: Discrimination? Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
Hello fathers out there! Man, am I feeling discriminated against. As I recall there were a ton of "Happy Mother's Day" messages on the server. How come there's so few (like two) for the other half of the equation, us fathers??? I hope you moms didn't forget us. Well guys, Happy (belated) Fathers Day! Hope you all had as nice a day as I did, eating too much, doing some swimming and playing with the kid(s). It was awfully hot here in Buffalo (above freezing) so there was a good excuse for not doing any strenuous work around the house. Just had to play all day, not too hard though cause I just broke a finger trying to recapture my youth via softball. It makes typing a little trickier but since I'm not very good at it to start with I hardly notice.
Frank Contrino contrino@buffnet.net ========================================================================= Date: Mon, 22 Jun 1998 22:22:26 -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: Believe it or Not!!! MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit
We are soooooo sorry to hear this news. We will continue to pray for you and like Jennifer said, maybe we need to be stronger and more direct with our praying. I always pray that God's will be done, so I truly believe Nicole is just not ready for the cranial surgery yet. Stay strong and hang in there. Our thoughts are with you daily.
The Hills (Mike, Robin, Carmen Rae)
---------- > From: Jack and Raquel <jara1@BELLSOUTH.NET> > To: APERT@LISTSERV.AOL.COM > Subject: Believe it or Not!!! > Date: Monday, June 22, 1998 8:35 PM > > Hi all.... > > Well believe it or not, Nicole's cranial surgery was cancelled again for > the third time. We thought third time would be the charm, but we were > wrong....and someone forgot to tell Nicki. She did though get tubes in > her ears which is what is believed to be the cause of the white blood > cells being so high. She did great and so far so good, the > anestheologist checked her airway passage while she was under and he > told us it looked good, no obstructions. So hopefully when she does > have her cranial that should work out o.k. > > I do apologize for not getting back to you guys sooner, I guess I just > wasn't up to it. We are feeling better and know that this is Gods > answer to our prayers and perhaps the tubes in the ears were more urgent > at this point than her cranial. The surgery is now re-scheduled again > for the fourth time for July 2nd, next week of course hoping that by > then she doesn't catch a cold because now our 3 year old is starting > with the sniffels and sort of dry cough. But again we have left it in > Gods hands. > > I hope everyone is well, I will try and catch up on all the e-mails > tomorrow, because I'm a little bit tired right now and Nicki is calling > for mommie because she wants to go beddie by... > > Talk to you all soon.... > > Raquel Miller in very, very hot, sunny and in much need of rain South > Florida..... ========================================================================= Date: Tue, 23 Jun 1998 20:35:25 +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: Discrimination? Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
Sorry Frank, if we had known it was Father's Day over there we would have sent a message to you. And all the other fathers of course.
Maybe it is just a sign that it is mostly Mums that are using the Listserver!? Were many of the Mother's Day messages from fathers?
Pleased to hear it was a good day for you.
Regards, Ann NZ
At 10:41 PM 22/06/98 EDT, you wrote: >Hello fathers out there! Man, am I feeling discriminated against. As I >recall there were a ton of "Happy Mother's Day" messages on the server. >How come there's so few (like two) for the other half of >the equation, us fathers??? I hope you moms didn't forget us. Well guys, >Happy (belated) Fathers Day! Hope you all had as nice a day as I did, >eating too much, doing some swimming and playing with the kid(s). It was >awfully hot here in Buffalo (above freezing) so there was a good excuse for >not doing any strenuous work around the house. Just had to play all day, >not too hard though cause I just broke a finger trying to recapture my youth >via softball. It makes typing a little trickier but since I'm not very good >at it to start with I hardly notice. > > >Frank Contrino >contrino@buffnet.net > > ========================================================================= Date: Tue, 23 Jun 1998 08:39:47 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Ted Finch & Jeanne McDermott <TFinch10@AOL.COM> Subject: Re: anesthesia Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Dear Joana, Thanks for the note on anesthesia. Very hepful. Here's my two cents for what it's worth--For any cranial surgery, our reconstructive surgeon uses the same anesthesiologist who, by this point, we know personally and trust. We've been through a lot of tough stuff together. It's the "little" operations where I worry. And thus am more active in making sure that the critical info is seen by whichever anesthesiologist gets the "little" case. Nate has fused tracheal rings, for example--a useful piece of info if he is intubated. He also has long bleeding times, within the normal range but just barely. In fact, he was thought to have a bleeding disorder at one point. My tactic is to convey as much info as possible so that any errors will be made on the side of caution. I have to add that Nate is practising the piano as I type this. When he was born, this is one of those things that I never would have predicted! Best, Jeanne in rainy Boston ========================================================================= Date: Tue, 23 Jun 1998 09:12:23 -0400 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Don Sears <dsears@SCRS.STATE.SC.US> Subject: Re: Hello Comments: To: "andyhahn@earthlink.net" <andyhahn@earthlink.net> MIME-Version: 1.0 Content-Type: text/plain
Thanks Andy. We're very proud of what the site has become and how meaningful it is to all the people involved. Just this week I've heard from two more families, one in France and on in Austria. It really is making our world smaller. Once the parents or adults find our page, what they really get involved in is the listserv - currently there are about 150 subscribers and it's very active.
I'm glad the page was helpful to you. Best of luck with your masters and with your career.
Don
> -----Original Message----- > From: * <`///>< [SMTP:andyhahn@earthlink.net] > Sent: Tuesday, June 23, 1998 12:48 AM > To: catndon@apert.org > Subject: Hello > > I just wanted to let you know that I found your site fully > comprehensive > :). I am a teacher of the third grade and am currently going to > school > for my masters. I was doing some research on Apert Syndrome and came > across your site. Before going into this study I had no real > conception > of what this syndrome was or how it effects the child in anyway. As > my > research furthered I found alot of psycological and of course the > physical effects that this burdens the child with. My studies are > almost over, but I had wished that I could have found your site > earlier > on in my studies. I would like to comend you on this site. It was > difficult for me to find information and books reguarding this > syndrome. All that I had found were medical books, But what I like > about your site is that it brings that human nature to this particular > aspect of life. I found your site touching as well as informative. > My > best reguards to you and your family. > > > Take care, > Andy > -- > "My knowledge is my reality, not theirs. So, I have to begin from > their > reality to bring them into my reality." -Paulo Feire. ========================================================================= Date: Tue, 23 Jun 1998 06:43:46 -0700 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Penny Halverson <phalvers@U.WASHINGTON.EDU> Subject: Poem: A Prayer for the Children (fwd) MIME-Version: 1.0 Content-Type: TEXT/PLAIN; charset=US-ASCII
Hi everyone! Here is a poem you'ld like to read that came from the other listserv. Hugs, Penny :-) *****
A PRAYER FOR THE CHILDREN
We pray for the Children who sneak popsicles before supper, who erase holes in math workbooks, who can never find their shoes. And we pray for those who stare at photographers from behind barbed wire, who can't bound down the street in a new pair of sneakers, who never "counted potatoes," who are born in places where we wouldn't be caught dead, who never go to the circus, who live in an X-rated world.
We pray for children who bring us sticky kisses and fistfuls of dandelions, who hug us in a hurry and forget their lunch money. And we pray for those who never get dessert, who have no safe blanket to drag behind them, who watch their parents watch them die, who can't find any bread to steal, who don't have any rooms to clean up, whose pictures aren't on anybody's dresser, whose monsters are real.
We pray for children who spend all their allowance before Tuesday, who throw tantrums in the grocery store and pick at their food, who like ghost stories, who shove dirty clothes under the bed, who never rinse out the tub, who get visits from the tooth fairy, who don't like to be kissed in front of the carpool, who squirm in church and scream in the phone, whose tears we sometimes laugh at and whose smiles can make us cry.
And we pray for those whose nightmares come in the daytime, who will eat anything, who have never seen a dentist, who aren't spoiled by anybody, who go to bed hungry and cry themselves to sleep, Who live and move, but have no being.
We pray for children who want to be carried and for those who must, who we never give up on, and for those who don't get a second chance. For those we smother and . . . for those who will grab the hand of anybody kind enough to offer it.
In Memory of........ Natalie Brooks, student age 12 Paige Ann Herring, student age 12 Stephanie Johnson, student age 12 Brittany R. Varner, student age 11 Shannon Wright, Teacher age 32 This is in memory of the children and teacher killed in the shooting on Tuesday, March 24, 1998, in Jonesboro, Arkansas.
Also in Memory of...... Mikael Nickolauson, student age 17 Ben Walker, student age 16
This is also in memory of the two teenagers killed in the shooting on Thursday, May 21, 1998, in Springfield, Oregon.
Written by: Sister Mary. ========================================================================= Date: Tue, 23 Jun 1998 21:04:45 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Elizabeth de Silva <lizsilva@SRV1.TELCONET.NET> Subject: Re: Discrimination? MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Dear Frank:
Oops! I am so glad to hear you had a wonderful day!
To all the other fathers my apologies. I think most of the people in the list are moms... I know that is not an excuse. I hope you all had a wonderful Fathers Day!! (and again please accept my apologies).
Elizabeth
Frank & Annette Contrino wrote:
> Hello fathers out there! Man, am I feeling discriminated against. As > I > recall there were a ton of "Happy Mother's Day" messages on the > server. > How come there's so few (like two) for the other half of > the equation, us fathers??? I hope you moms didn't forget us. Well > guys, > Happy (belated) Fathers Day! Hope you all had as nice a day as I did, > > eating too much, doing some swimming and playing with the kid(s). It > was > awfully hot here in Buffalo (above freezing) so there was a good > excuse for > not doing any strenuous work around the house. Just had to play all > day, > not too hard though cause I just broke a finger trying to recapture my > youth > via softball. It makes typing a little trickier but since I'm not > very good > at it to start with I hardly notice. > > Frank Contrino > contrino@buffnet.net ========================================================================= Date: Tue, 23 Jun 1998 09:12:13 -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: pic MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Nicholas and his brothers pic got pic of the week on the Gulf Shores vacation page... if you care to look, here's the link.. he is proud! Wanted me to tell everyone.... you have to click on the thumbnail pic to get nick in the pic...
http://www.al.com/gulfshores/pics.html ========================================================================= Date: Tue, 23 Jun 1998 13:20:15 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jennifer Graham <Jenngram@AOL.COM> Subject: Re: Discrimination? Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
ABSOLUTLY......Happy Belated Fathers day to all the dads...I don't know about the other "moms" around here, but I was so busy planning Fathers days activities..presents and meals that I nearly forgot to call my own dear dad and wish him a good day!!!!
But we were thinking of all the dads out there....hope ya'll all had a good time on Sunday!!!!
Jenn(Tampa/St. Pete) ========================================================================= Date: Tue, 23 Jun 1998 13:28:36 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jennifer Graham <Jenngram@AOL.COM> Subject: Re: anesthesia Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Wanted to pass along that I too always give far more info to the anesthiologists, as they are always different and I sometimes worry that when youa re hurridly reviewing a chart something may get missed. I have reviewed enough charts and missed enough info in my day to know and understand it happens. better to repeat 100 times than for something to be overlooked. I know sometimes Jordan can be a lazy breather after surgery..never to the point where he is in dangeror they can't extubate him, but as w/ anything he does..he'd much prefer someone do it for him until hes awake and wants to be a wiggle worm. He also has funky bleeding times, and anesthesia makes him throw- up horribly so I always ask for him to be given Phenagren (sp) to help w/ this. Its all in his chart, but some of the info comes as a suprise...mind you his cahrt (like all of our kids I'm sure) is bigger than the latest John Grisham novel...odds are the WHOLE thing wasn't read over cover to cover!!! Better to be safe and a nag, than....well...... than you know what!!
AND...so glad to hear about Nate playing the piano..It was one of the things our plastic doc told us Jordan would probablly never do..although he'd be able to do most things. we haven't bought the piano yet..but plan to prove him wrong in the future w/ an invitation to a recital...just b/c he Said Jordan would never do it!!!! GOOOOO NATE!!!!!!
Jenn(Tampa/St. Pete) ========================================================================= Date: Tue, 23 Jun 1998 13:25:16 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Christina Mathis <ZoeyNTia@AOL.COM> Subject: Father's Day Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Zoey's Mom here, Christina and I felt the need to respond to Frank's message about Father's Day. First off, I'm sorry I forgot the wonderful father's that I admire for taking care of their children. Father's Day is kind of forgotten about in our house because both of my children's fathers are selfish, inconsiderate, deadbeat and not here with us. So....to those father's who stick around and take care of their beautiful children...my hat is off to you!!!!
Sincerely, Christina Mathis Hot and Humid San Antonio ========================================================================= Date: Tue, 23 Jun 1998 13:36:54 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: Jennifer Graham <Jenngram@AOL.COM> Subject: Re: new facility Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Just FYI.... a friend of mine, who is a NICU nurse at the Childrens hospital in New Orleans called me to say they had a big meeting there and are establishing a craniofacila team to treat many conditions, obviously...but one in particular was Apert. She was thrilled to be one of the only nurses and residents to not only hear of the syndrome, but know so much about it..and have met a child w/ it. Anyway...she passed along the website for Teeters page to everyone at hte meeting...so look for a lot of new hits, Don!!!! Guess our kids will be a big part of their education andorientation to the syndrome. I know the plastics guy heading up the team is a Dr. Walsh. I am sure it has a ways to go in the development and recruitment phase, but interesting none the less.
Jenn(Tampa/St. Pete) ========================================================================= Date: Tue, 23 Jun 1998 17:20:22 -0400 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Leanne Maclean <lmaclean@NETCOM.CA> Subject: Various MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii
Hi everyone,
I had Amy in today to get the bandage off her right hand and have a splint made for her thumb and it looks great! I thought it would be on for three and a half weeks but the surgeon said she only need wear it for two weeks now that she is older. It is her birthday today and what a wonderful present (six years old now!). Although I think the birthday card list is a wonderful idea I'm not putting our name on as I am terrible at getting things in the mail on time!
Also saw someone from ortho today to go over x-rays she had done on her shoulders. Guess she has a very shallow socket and the ball is not evenly formed so her shoulders are always slightly dislocated. Can't do anything in that department surgically but I did want to know how things were "put together". Explains the limits on her range of motion...we will have to be conscious of the 'use it or loose it' slogan!
Other thing I wanted to mention was that we are very excited about our grade one placement decision. Amy will be attending grade one in a multiage classroom that contains grades 1, 2 and 3. She will receive some teacher assistant support and also get speech and O.T. at school. This decision meant that she won't be attending the same school as her brother but the services and support are incredible. I was also thrilled to discover today that one of the teacher assistant's from her early intervention classroom has decided to move into the multiage classroom so Amy will have someone there who knows what she is capable of doing and the classroom shouldn't feel too overwhelming with a familiar face! Today the school sent home a keyboard called an "AlphaSmart 2000" that she will be able to use in conjunction with learning to print in the classroom. It basically is a keyboard that has 8 files that you can save to. The screen shows only four lines of print. It is attachable to both IBM and MAC's to do the advanced wordprocessing features. Files have to be transferred to a desktop to be printed. I have been playing with it and it works very well! The school was able to pay for it (around $400 Canadian) through her early intervention funding that expires when she hits grade one. They would like her to use it over the summer so she becomes familiar with it.
Guess I'd better go get ready for the birthday girl!
Regards, Leanne from sunny and hot Alberta! ========================================================================= Date: Tue, 23 Jun 1998 19:52:11 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: Piano Playing Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Dear Jeanne:
I laughed when you mentioned Nate was playing piano. I have been told, so Emily will never be a concert pianist. I just smile and say you never know. Who knows, she will probably grow up and learn to play better than I do.
Janine ========================================================================= Date: Tue, 23 Jun 1998 20:01:29 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: Believe it or Not!!! Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Sorry to hear about Nicole's surgery being cancelled. This must be so frustrating for all of you. You sound like you have things under control. Hopefully the ear tubes will be just what was needed for her.
I know for Emily they made a tremendous difference.
Take care,
Janine ========================================================================= Date: Tue, 23 Jun 1998 20:14:33 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: Various Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Dear Amy:
HAPPY BIRTHDAY TO YOU!!! HOPE YOU ENJOY YOUR SPECIAL DAY.
Glad to hear that your hand is healing nicely and you are doing well in school. It sounds like things are going well for you. Enjoy your birthday.
Janine and Emily Krebs ========================================================================= Date: Tue, 23 Jun 1998 20:12:21 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Janine Krebs <Yonstein@AOL.COM> Subject: Re: Hand Surgeries Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Hello All:
We had a consultation with a hand surgeon today and I wanted to share with you for some info and feedback. If you remember a while ago I told you a story about my husband meeting a woman and her daughter at work and him noticing that the daughter had Aperts. Anyway, he noticed how beautiful her hands were and I then spoke to her and that's how I got the name of this doctor. I know some of you might be familiar with him, Dr. David Chiu out of Columbia Presbyterian in New York City.
Anyway, the technique he uses is done in stages. Emily's bones are fused together. The first surgery will involve separating the bones only. Then after that he will begin to separate the fingers individually. He doesn't believe in doing bilateral surgery. He is concerned about blood loss to the fingers.
This sounded good with us. My concern is that he said that there will be 8 to 10 surgeries on her hands. That sounds like a lot of surgeries. I guess that's the question that I am having and would like some info on. Oh, one very important thing. Although as he said there are no guarantees, he is very confident that Emily will have all ten fingers. All of the bones are there, they just have to be separated.
Thanks for any feedback on this. Its much appreciated.
Janine Krebs ========================================================================= Date: Tue, 23 Jun 1998 21:33:12 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: Hand Surgeries Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Janine,
It sounds like your doctor has a similar philosophy as ours. He also doesn't recommend doing bilaterally surgeries for various reasons. He did do both of Jonathan's pinkies at the same time though because the bones were not fused. His other fingers however are and therefore more involved. We will have a total of 5 surgeries just to release all the fingers and then some more later to straighten, thin, etc.. Jonathan's thumbs were not fused at birth so we didn't have to do those. It sounds like your doctor is giving good advice. Especially if you have already seen hands that he has done. That was the clincher for us when we decided on our surgeon. Good luck with your decision and let us know how things progress.
Brenda ========================================================================= Date: Tue, 23 Jun 1998 21:37:02 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: "<George Siebert>" <GSieb91515@AOL.COM> Subject: Re: Various Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Amy--
HAPPY 6TH BIRTHDAY! Hope you have a really special day. Jonathan's sister's 9th birthday is today too. We went to the movies and saw Mulan. It was very good. We are glad to hear your out of bandages and looking good.
Leanne,
The computer stuff sounds great. I hope we will be entitled to this type of equipment when Jonathan is ready for school. We have a great system in our area so hopefully we won't have too many battles in that area.
HAPPY, HAPPY BIRTHDAY!
The Sieberts George, Brenda, Melissa and Jonathan ========================================================================= Date: Tue, 23 Jun 1998 20:44:55 -0700 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: lisa mcgahan <wmcgahan@IX.NETCOM.COM> Subject: Re: cleft palate MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit
Pat- Thank you for your message. I will try all of that. They are going to close her palate at 10 months. I loved EvaJessie's picture!!!!!! Thanks, Lisa
---------- > From: baconsmith <bluenose@TELUSPLANET.NET> > To: APERT@LISTSERV.AOL.COM > Subject: Re: cleft palate > Date: Saturday, June 20, 1998 9:42 AM > > Hi Lisa, Pat here, mom to EvaJessie (5yo now!) > EvaJessie was born with a cleft palate. We had a feeding plate for her > (called an obturator) which fit in the roof of her mouth. It prevented some > food from getting into the cleft. It sounds as tho Morgan doesn't have an > obturator, tho. One of the things I've heard mentioned from other parents > is making the food runny at first with some formula or breastmilk and > feeding from the side of a spoon so Morgan can just take little sips of it > at a time until she gets used to it. She'll eventually (probably) be able > to manoeuver her tongue against the side or front of her mouth so that she > can swalow without pushing the food up into the palate. > > Try doing this yourself. Take a small sip of something and figure out where > your tongue has to sit in order for you to swallow. Mine sits right at the > front of my mouth against my teeth. Well, somehow, Morgan has to get that > food to the back of her mouth, past her tongue. Experiment with giving it > to her maybe over toward the side so she can maybe press her tongue against > her cheek to move the food back toward the back without pushing it up into > the open palate. And if you make the food runny to begin with then what > does get pushed up into the palate will hopefully be thin enough so that it > doesn't cause too much discomfort. I've also heard of kids who dislike > fruit because of the acidic nature and that it causes more discomfort than > other foods. > > Let us know how it goes. Hope this helps a bit. > Pat and EvaJessie in Calgary > > ps. when do they plan to close Morgan's palate? > email to: bluenose@telusplanet.net > IM: onlypeach > shake and shake the ketchup bottle. none will come and then a lot'll ... unknown ========================================================================= Date: Tue, 23 Jun 1998 21:00:03 -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: discriminated fathers MIME-version: 1.0 Content-type: text/plain; charset="us-ascii"
OOOPS! Just seeing if you few guys on the list were paying attention!ha...ha... HAPPY (belated) FATHER'S DAY!!!!!!!!!
DENISE GRAHAM ========================================================================= Date: Tue, 23 Jun 1998 22:22:45 -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: Laurie Bailey <jkb@ELPASO.NET> Subject: Re: Discrimination? MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit
Sorry guys!
Here's a belated HAPPY FATHER'S DAY!!!!!!
Laurie Bailey
---------- > From: Frank & Annette Contrino <contrino@BUFFNET.NET> > To: APERT@LISTSERV.AOL.COM > Subject: Discrimination? > Date: Monday, June 22, 1998 9:41 PM > > Hello fathers out there! Man, am I feeling discriminated against. As I > recall there were a ton of "Happy Mother's Day" messages on the server. > How come there's so few (like two) for the other half of > the equation, us fathers??? I hope you moms didn't forget us. Well guys, > Happy (belated) Fathers Day! Hope you all had as nice a day as I did, > eating too much, doing some swimming and playing with the kid(s). It was > awfully hot here in Buffalo (above freezing) so there was a good excuse for > not doing any strenuous work around the house. Just had to play all day, > not too hard though cause I just broke a finger trying to recapture my youth > via softball. It makes typing a little trickier but since I'm not very good > at it to start with I hardly notice. > > > Frank Contrino > contrino@buffnet.net ========================================================================= Date: Tue, 23 Jun 1998 22:35:09 -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: Laurie Bailey <jkb@ELPASO.NET> Subject: Re: Various MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit
Hey Leanne,
I'm interested in information about this keyboard. My parents are foster parents to a 9 year old with cerebral palsy. He loves the computer but has a hard time with the keyboard. I'm just wondering if this would be something that would help him out.
You can email me privately at jkb@elpaso.net
Thanks! Laurie Bailey
---------- > From: Leanne Maclean <lmaclean@NETCOM.CA> > To: APERT@LISTSERV.AOL.COM > Subject: Various > Date: Tuesday, June 23, 1998 4:20 PM > > Hi everyone, > > I had Amy in today to get the bandage off her right hand and have a splint > made for her thumb and it looks great! I thought it would be on for three > and a half weeks but the surgeon said she only need wear it for two weeks > now that she is older. It is her birthday today and what a wonderful > present (six years old now!). Although I think the birthday card list is > a wonderful idea I'm not putting our name on as I am terrible at getting > things in the mail on time! > > Also saw someone from ortho today to go over x-rays she had done on her > shoulders. Guess she has a very shallow socket and the ball is not evenly > formed so her shoulders are always slightly dislocated. Can't do anything > in that department surgically but I did want to know how things were "put > together". Explains the limits on her range of motion...we will have to > be conscious of the 'use it or loose it' slogan! > > Other thing I wanted to mention was that we are very excited about our > grade one placement decision. Amy will be attending grade one in a > multiage classroom that contains grades 1, 2 and 3. She will receive > some teacher assistant support and also get speech and O.T. at school. > This decision meant that she won't be attending the same school as her > brother but the services and support are incredible. I was also thrilled > to discover today that one of the teacher assistant's from her early > intervention classroom has decided to move into the multiage classroom > so Amy will have someone there who knows what she is capable of doing and > the classroom shouldn't feel too overwhelming with a familiar face! > Today the school sent home a keyboard called an "AlphaSmart 2000" that she will be able to use in conjunction with learning to print in the classroom. It basically is a keyboard that has 8 files that you can save to. The screen shows only four lines of print. It is attachable to both IBM and MAC's to do the advanced wordprocessing features. Files have to be transferred to a desktop to be printed. I have been playing with it and it works very well! The school was able to pay for it (around $400 Canadian) through her early intervention funding that expires when she hits grade one. They would like her to use it over the summer so she becomes familiar with it. > > Guess I'd better go get ready for the birthday girl! > > Regards, > Leanne > from sunny and hot Alberta! ========================================================================= Date: Tue, 23 Jun 1998 22:30:26 -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: Laurie Bailey <jkb@ELPASO.NET> Subject: Re: pic MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit
Wonderful picture! Looks like they had loads of fun!!!
Laurie Bailey jkb@elpaso.net
---------- > From: Tim Graves <timg@BELLSOUTH.NET> > To: APERT@LISTSERV.AOL.COM > Subject: pic > Date: Tuesday, June 23, 1998 9:12 AM > > Nicholas and his brothers pic got pic of the week on the Gulf Shores > vacation page... > if you care to look, here's the link.. he is proud! > Wanted me to tell everyone.... > you have to click on the thumbnail pic to get nick in the pic... > > http://www.al.com/gulfshores/pics.html ========================================================================= Date: Tue, 23 Jun 1998 22:38:11 -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: Laurie Bailey <jkb@ELPASO.NET> Subject: Re: Piano Playing MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit
Hey guys:
I took piano lessons for 10 years. So, when Jacob was born, I was a tad disappointed because of his hands. Let me just tell you that he plays that piano every day in his own little way and wants mommie to play right along with him.
When our daughter, Jordan, was born. Everyone said she was going to be our piano player because she has long fingers. I told everyone "only if Jake lets her on the piano bench!"
Heaven forbid anyone tell our kids they can't do something because they will prove them wrong in a heart beat!!
Laurie Bailey jkb@elpaso.net
---------- > From: Janine Krebs <Yonstein@AOL.COM> > To: APERT@LISTSERV.AOL.COM > Subject: Re: Piano Playing > Date: Tuesday, June 23, 1998 6:52 PM > > Dear Jeanne: > > I laughed when you mentioned Nate was playing piano. I have been told, so > Emily will never be a concert pianist. I just smile and say you never know. > Who knows, she will probably grow up and learn to play better than I do. > > Janine ========================================================================= Date: Tue, 23 Jun 1998 22:44:23 -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: Laurie Bailey <jkb@ELPASO.NET> Subject: Re: Hand Surgeries MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit
Janine,
Sounds like you've done some research on this doctor. If you feel he has done a great job in the past, then I say go for it.
Jacob's surgeons have always done bilateral surgery. He has had more surgeries on his hands than most because of the use of tissue expanders.
As far as all the digits, it all depends on how much of the bones are fused and if there is enough bone to separate into two separate digits and still have them functional. When Jacob first went to the hand surgeon, he didn't think Jake would have all the digits on his right hand. Well, it turns out that we will get all the digits. The surgeon couldn't see on the x-ray how the two middle fingers were fused. But, during the last separation, he was able to see that there is plenty of bone to separate. Also, Jacob's fingers were fused only at the joint areas and not the entire bone for the finger.
Hope this info helps!
Laurie Bailey jkb@elpaso.net
---------- > From: Janine Krebs <Yonstein@AOL.COM> > To: APERT@LISTSERV.AOL.COM > Subject: Re: Hand Surgeries > Date: Tuesday, June 23, 1998 7:12 PM > > Hello All: > > We had a consultation with a hand surgeon today and I wanted to share with you > for some info and feedback. If you remember a while ago I told you a story > about my husband meeting a woman and her daughter at work and him noticing > that the daughter had Aperts. Anyway, he noticed how beautiful her hands were > and I then spoke to her and that's how I got the name of this doctor. I know > some of you might be familiar with him, Dr. David Chiu out of Columbia > Presbyterian in New York City. > > Anyway, the technique he uses is done in stages. Emily's bones are fused > together. The first surgery will involve separating the bones only. Then > after that he will begin to separate the fingers individually. He doesn't > believe in doing bilateral surgery. He is concerned about blood loss to the > fingers. > > This sounded good with us. My concern is that he said that there will be 8 to > 10 surgeries on her hands. That sounds like a lot of surgeries. I guess > that's the question that I am having and would like some info on. Oh, one > very important thing. Although as he said there are no guarantees, he is very > confident that Emily will have all ten fingers. All of the bones are there, > they just have to be separated. > > Thanks for any feedback on this. Its much appreciated. > > Janine Krebs ========================================================================= Date: Tue, 23 Jun 1998 22:51:54 -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: Laurie Bailey <jkb@ELPASO.NET> Subject: Long-time no talk MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit
Hey gang!!!
Sorry it's been so long since I've responded to the listserv. Between working 50 hours a week and taking care of a 2 year old and a 4 month old, I've been a little busy.
Wanted to let you all know that Jacob is scheduled to have the next set of tissue expanders put in on July 14. Then we will have about 3 months of filling and then they will separate the index fingers out.
I don't know if I missed it but, do we know if EvaJessie has had her expanders put in yet? Let me know how things are going.
Judy, Glad to hear you had a great time in Myrtle Beach with the Sears'.
Happy Birthday to Amy and anyone else I may have missed here recently. I'm going to try to put a list together for myself that I can print out at the beginning of every month to send out cards.
Well I think that's all for now. Oh! Anyone who hasn't received a picture of Jacob Bailey let me know because I have some reprints I was waiting on but I lost the list of who I sent to and who I didn't. Email me privately please.
Laurie Bailey jkb@elpaso.net ========================================================================= Date: Wed, 24 Jun 1998 06:30:00 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "Horning, Bob D (MN14)" <Horning_Bob@HTC.HONEYWELL.COM> Subject: Re: Piano Playing MIME-Version: 1.0 Content-Type: text/plain
Besides the fingers, Krista has fused elbows. This means she can't twist her wrist, so piano playing really is out of the question. However, we just recently discovered that she can do pretty well with a "bell set." That's the official name of what we always called a xylophone. That may be an option for some others.
Hopefully Krista inherited her mother's talent and not mine. Mary plays piano pretty well. When I was a kid, I took piano lessons for quite a few years until my teacher called my mom and asked if I could quit. (That's a true story) :-)
Bob Horning ========================================================================= Date: Wed, 24 Jun 1998 08:57:25 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Beth Tolson <ETolson643@AOL.COM> Subject: Re: anesthesia Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Jeanne
What anesthesiologist do you have at Children's?
Beth ========================================================================= Date: Wed, 24 Jun 1998 20:45:43 -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: Elizabeth de Silva <lizsilva@SRV1.TELCONET.NET> Subject: Re: Various MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Happy Birthday Amy!!
Dear Leanne, I am so glad to hear that Amy is doing so great with her right hand!! That is absolutely a great Birthday present!
I am completely sure she will do great at school.
Happy Birthday again.
Elizabeth ========================================================================= Date: Wed, 24 Jun 1998 07:51:32 -0600 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: baconsmith <bluenose@TELUSPLANET.NET> Subject: Re: Long-time no talk Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
Hey Laurie
Between >working 50 hours a week and taking care of a 2 year old and a 4 month old, >I've been a little busy.
a little? My goodness, I should send you some of my time -- we're busy here too but holy timex, batman -- you're running at a deficit!
Is this jacob's second set of tissue expanders?
EvaJessie had her balloon put in on June 10. She's two weeks post op right now and we will begin the expansions at the docs office on June 29. Our surgeon offered to show me how to do these injections but because it is on her face, I declined. I think I do better at the preparing, holding cuddling encouraging stuff. I told him I don't inject! ha ha Anyway, we have docs locally who will help us out and both are plastic surgeons so they will be alert for any difficulties that might arise. I've talked to a few surgeons and none of them has yet done expansion on the face of a kid this young, so it appears we are breaking trail here. That makes me want to be extra cautious too.
The surgeon said her skin is very very thin so he wants to go slowly. The swelling in her cheek is gone now and hte expander is clearly seen -- it's about the size of a business card -- rectangular with rounded corners. The port is up near her temple and it bulges out too. She's still pretty sensitive to anyone touching it, so we are working on that. Else she won't let the doctor near her on Monday.
She seems pretty comfortable with the idea, tho -- she talks matter of factly about it. Told lots of kids about it when they asked the other day on a field trip we were on.
We leave for holidays thisFriday for two weeks of beach! We get back just before Jacob's tissue expander goes in.
Thanks for your note, Laurie. I'm mostly lurking here. Pat and EvaJessie in Calgary the longest day of the year on Sunday and it was still light at 10 pm No wonder I have trouble getting my kids to bed! email to: bluenose@telusplanet.net IM: onlypeach shake and shake the ketchup bottle. none will come and then a lot'll ... unknown ========================================================================= Date: Wed, 24 Jun 1998 08:03:35 -0600 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: baconsmith <bluenose@TELUSPLANET.NET> Subject: Christine Clark Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
Hi Christine. A quick note to let you know I got the newsletters you sent. They are great! You've done an amazing job. Thanks also for the pictures. Belle is indeed a beautiful girl!
I was sorry to read that your breast cancer surgery was not good news. We are continuing to send positive healing thoughts your way. You sound positive also, so that can be a real blessing to keep your faith. We are all with you in spirit, you know.
Take special good care of you! Pat and EvaJessie in Calgary ps I was in Sacramento with EvaJessie last year for a Cleft Symposium. Right in your neck of the woods and EvaJessie keeps asking if we can go back to California. email to: bluenose@telusplanet.net IM: onlypeach shake and shake the ketchup bottle. none will come and then a lot'll ... unknown ========================================================================= Date: Wed, 24 Jun 1998 10:49:18 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Resa and Mark Pace <Copperhd87@AOL.COM> Subject: Dr. John Jane & Christopher Reeve Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
In the July issue of Readers' Digest is an article about Christopher Reeve that mentions his neurosurgeon as being Dr. John Jane of the University of Virginia. I know that a couple of you have had contact with Dr. Jane or Dr. Francel who was a student with Dr. Jane and thought you might find that interesting.
Resa ========================================================================= Date: Wed, 24 Jun 1998 11:26:44 -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: George Starr <daystar@IGLOU.COM> Subject: Re: shoulders MIME-Version: 1.0 Content-Type: text/plain; charset="iso-8859-1" Content-Transfer-Encoding: 7bit
Rosemarie also has this limited reach above the head. She's a non-swimmer though so not much help there. George Starr
Date: Sunday, June 21, 1998 8:56 PM Subject: shoulders
>Our daugter cannot lift her arms very well above her >shoulders...although there is some range above the shoulder height. I'm >sure it has something to do with the syndrome. She loves swimming...and >I guess backstroke is out of the question. The limited range really >hasn't affected much if anything else however.. > ========================================================================= Date: Wed, 24 Jun 1998 12:47:18 -0400 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Don Sears <dsears@SCRS.STATE.SC.US> Subject: Re: Hello Comments: To: "andyhahn@earthlink.net" <andyhahn@earthlink.net> MIME-Version: 1.0 Content-Type: text/plain; charset="iso-8859-1"
Financially, there are no organizations specifically set up for us. Most of us bear the burden, but decent medical insurance covers quite a bit. For the problems of the hands and feet, the Shriner's Hospitals provide excellent surgical and orthopedic services at no cost.
As you would expect, education varies widely due to individual and geographic differences. Teeter has been in special needs preschool for 2 years, and one year in a K-class for the academically at risk. They feel she could be mainstreamed but would prefer to keep her in the smaller base classes, with gradual introduction into larger more mainstream classes as time goes by. They don't want her to become just another one face out of 30 (not likely!) - she is truly special to her teachers, and has a way of making you fall in love with her right away. We trust their judgement and feel they have her best interests in mind.
We have had reports that other school systems in other parts of the country have not pleased the parents - Christine Clark may want to respond to represent that group!
> -----Original Message----- > From: * <`///>< [SMTP:andyhahn@earthlink.net] > Sent: Tuesday, June 23, 1998 11:30 PM > To: Don Sears > Subject: Re: Hello > > Dear Don, > > Thank-you very much in responding back to my E. I had just > gotten back > talking with my professor and she is a teacher in Special Education, > she > was the one initially who told me about this syndrome. She had asked > me > a question that I was not able to find in my research, but I was > wondering if you can help me out. That is if you have the time. > There > are actually two question that I would like to ask. > > 1. What was/ and how was the financial burden raising a child with > Apert Syndrome? Is there funding available? Or does it come straight > out of your pocket? (Which I hope that it doesn't because my > understanding is that there are hundrends of operations and medical > teams that help the child along.) > > 2. What is uaually the educational route that a child undergoes when > they have Apert Syndrome? Do they usually go to a general education > classroom or do they usually attend special education classes? I ask > this particular question because it is to my understanding that, > developmentally speaking, the range is from average to low. > > > If you have the time to answer these questions, I would be greatly > appreciative for your efforts, thank-you. :) > > Andy > > > Don Sears wrote: > > > > Thanks Andy. We're very proud of what the site has become and how > > meaningful it is to all the people involved. Just this week I've > heard > > from two more families, one in France and on in Austria. It really > is > > making our world smaller. Once the parents or adults find our page, > > what they really get involved in is the listserv - currently there > are > > about 150 subscribers and it's very active. > > > > I'm glad the page was helpful to you. Best of luck with your > masters > > and with your career. > > > > Don > > > > > -----Original Message----- > > > From: * <`///>< [SMTP:andyhahn@earthlink.net] > > > Sent: Tuesday, June 23, 1998 12:48 AM > > > To: catndon@apert.org > > > Subject: Hello > > > > > > I just wanted to let you know that I found your site fully > > > comprehensive > > > :). I am a teacher of the third grade and am currently going to > > > school > > > for my masters. I was doing some research on Apert Syndrome and > came > > > across your site. Before going into this study I had no real > > > conception > > > of what this syndrome was or how it effects the child in anyway. > As > > > my > > > research furthered I found alot of psycological and of course the > > > physical effects that this burdens the child with. My studies are > > > almost over, but I had wished that I could have found your site > > > earlier > > > on in my studies. I would like to comend you on this site. It > was > > > difficult for me to find information and books reguarding this > > > syndrome. All that I had found were medical books, But what I > like > > > about your site is that it brings that human nature to this > particular > > > aspect of life. I found your site touching as well as > informative. > > > My > > > best reguards to you and your family. > > > > > > > > > Take care, > > > Andy > > > -- > > > "My knowledge is my reality, not theirs. So, I have to begin from > > > their > > > reality to bring them into my reality." -Paulo Feire. > > -- > "My knowledge is my reality, not theirs. So, I have to begin from > their > reality to bring them into my reality." -Paulo Feire. > > MLGYL: http://www.geocities.com/SunsetStrip/9779/ ========================================================================= Date: Wed, 24 Jun 1998 13:08:16 -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: Laurie Bailey <jkb@ELPASO.NET> Subject: updated mailing & birthday list MIME-Version: 1.0 Content-Type: multipart/mixed; boundary="----=_NextPart_000_01BD9F71.26DBC5E0" Content-Transfer-Encoding: 7bit
This is a multi-part message in MIME format.
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Hey guys:
I put together a similar spreadsheet as was shown before. I attached it to this message. It has an updated birthday list as to what I have in my records.
Those of you concerned about me wearing my self out, please don't worry. Mostly, my job is in the late afternoons and nights. I am a restaurant manager for Chili's Grill & Bar. So, I close the restaurant alot. This gives me alot of time to spend with my kids. I don't always see my husband but, we see each other enough on my days off or when I happen to open the restaurant and am home in the evenings. I've been doing the restaurant thing for 8 years now (4 in management) so, my body is used to staying up late and getting up early. Although, my kids usually don't get up till 8:30 or 9:00 (even my 4 month old!). I am also a pretty organized person so, I have lists of things I do every day to keep my house in order and get the extra things like read my email and work on my creative memories books and so on.
So, don't worry about me. I'll be just fine. (I also know how to ask for help from my mom if I need it.)
Laurie Bailey jkb@elpaso.net
========================================================================= Date: Wed, 24 Jun 1998 16:03:59 -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: Steve & Stacy <sshb@EROLS.COM> Subject: Re: Brooke MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Brooke's infection started just because bacteria happen to get inside even though we kept the area clean. There isn't anything else we could have done. We just found out on Monday that another bacteria got in to her new shunt. Dr. Carson took it out last night and put a drain in. Her head has so many stitches in it now that they may have to let her head heal before they replace the shunt again. That will be Shunt #6 and we are up to 5 surgeries in 4 weeks. I pray that this horrible circle will end very soon. We are now talking at least another 3 weeks in the hospital. I think her real home is Johns Hopkins Hospital, since she has only been home a total of 23 weeks in 18 months
Glad to her you are home Christine. Our prayers are with you .
Pacifers for cleft palette, Take a nipple off a favorite bottle. Stuff it with gauze. Sew it to a cloth diaper at 4 points wash in machine every other day (you will need to make 3 or 4). Stacy Bell ========================================================================= Date: Wed, 24 Jun 1998 16:44:35 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Beth Tolson <ETolson643@AOL.COM> Subject: Re: shoulders Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Hello to all...
Tim has limited range of motion in his shoulders. It has not hampered him from learning to swim, a sport he does well and really enjoys.
Beth ========================================================================= Date: Wed, 24 Jun 1998 15:53:49 -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: updated mailing & birthday list Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
Laurie, you are truely amazing. Thank you so much. The spreadsheet is wonderful! Thanks for making the time to do this.
Hugs, Robyn Johnston
> ========================================================================= Date: Wed, 24 Jun 1998 18:18:01 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Ize <ize@TACOMA.CEATLABS.OKSTATE.EDU> Subject: Re: Varios MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Happy Birthday Amy!!!!
Hope you are having a wonderful day...
The Ize's. ========================================================================= Date: Wed, 24 Jun 1998 18:22:05 -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: Shoulders MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
When Felipe was a baby he had some limitation on his shoulders. Then we started working more on this area, playing how big is Felipe....and so on... Now he is almost three years old and have no limitations anymore. He reaches things, and hold things above his head.
The Ize's. ========================================================================= Date: Wed, 24 Jun 1998 18:28:16 -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: Discrimination MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Happy (belated) FATHER'S DAY to all of you!!! I am sure that next year we mothers will be punctual. :-)
The Ize's. ========================================================================= Date: Wed, 24 Jun 1998 19:35:51 -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: "Zaengle, Joseph D" <Joseph.Zaengle@UNISYS.COM> Subject: Update on IEP and Apnea MIME-Version: 1.0 Content-Type: text/plain; charset="iso-8859-1"
Just wanted to give everyone an update on where we're at with two issues we posted awhile ago here on the LISTSERV. Anne and I got a lot of valuable input from many of you, both privately and publicly, and want to thank everyone who provided us with info. Quentin is 5 and our concerns were 1) what course of treatment to follow for his recently (but not surprisingly) diagnosed sleep apnea and 2) what to do about kindergarten placement at the IEP. So here goes:
1) For Quentin's apnea, we have decided to follow the recommendation of the Drs. at CHOP and do the tonsils and partial adenoids. We weighed all the options, pros/cons, expected outcomes, and opinions carefully and decided to go forward...thanks to people like Christine (Get Well Soon!) for helping us make sure all issues like speech were covered in detail with the Drs. Surgery is July 9. Quentin's last surgery was about 2 and 1/2 years ago when he was really just a toddler so we could really use some advice on how you prepare a 5 year mentally for a surgery.
2) The IEP team for his kindergarten placement consisted of 13 people including principal, teachers, Special Ed directors, nurse, therapists, etc.! We met for over two and a half hours. Our goal was to have Quentin attend his regular school for kindergarten with a full time aide. We achieved our goal and are really looking forward to the fall. (And he is too!). He'll get the majority of his related services (OT, PT, Speech, etc.) outside the regular class to maximize his in-class time. He'll have an aide to help him transition, to help him focus, and to address some behavioral issues like attention-getting. Now, how'd we do that in one sitting, no due process, and no shouting? You all helped us do it!!
First, I spent a lot of time understanding the IEP process and our rights. A book called "Negotiating the Special Ed Maze" was real helpful for that, as were some Web sites including our state's Ed Dept. (Pennsylvania). Unless you're a lawyer, you need help interpreting what the laws are...
Second, we had an advocate with us but as it turned out she really didn't need to get too involved. As we learned from many of you, having an advocate certainly shows the district that the parents are interested in their child's future.
Third, we knew what placement we wanted and the proper terminology to use to ask for it when it was time. We wanted him in the 'most appropriate' and 'least restrictive environment', which we felt was his home school's kindergarten. We also wanted assistance for him to deal with learning and behavioral differences.
Then we planned how WE would run the IEP meeting. As discussed in the above book, we decided that I would take an aggressive facilitating approach. I do this at work so I was comfortable with it. It doesn't mean screaming and bullying or threatening. To us it just meant keeping the meeting focused on our goals and covering everything we wanted to cover. So we laid out an agenda like this:
- Introductions, who are all these people?!?!? - I provided updated medical and genetic info from Teeter's Page. Great job Don! (Remember, nearly everyone but us and the best doctor's work off of woefully outdated photocopied texts.) - I talked about the LISTSERV, Teeter's page and what kind of info was available - We passed around pictures of Quentin, action - bike riding, T-ball, gym, etc. - We provided 'testimonials' and success stories from some of you (no names of course), again to counter the outdated, pre-conceived low mental capability notion - I talked about how this was an opportunity for the SCHOOL DISTRICT and us to both win - how rare Apert is, how they can shine and educate their fellow educators. (I'm not a marketer but I've met enough of them!!!) - we volunteered to provide the same kinds of info at an in-service day or parent's meeting, etc. - then we went through goals and objectives like at a regular IEP - then we addressed related services like OT, PT, etc. and the durations we wanted - next was assistive technology - special scissors, allowance for handwriting to be larger, classroom placement, etc. - transportation - regular bus, bus 'buddy', driver training on handling teasing, etc. - then the biggie, placement. We expected this to be contentious as an aide obviously costs $ but the discussion went well. I was able to refer to many quotes from the district's own evaluation that said things like 'responds to an adult easing him into a new activity' and so on. - The team agreed and we summarized and celebrated
I do apologize for this being so wordy but I know many of you are or will be going thru the school selection process soon. Maybe this will help some of you. Let us know if you have any questions. I want to stress that your collective help was really key to us knowing what to do, how to do it, what kinds of options were available, etc. We see traits of our son in so many of you and yours that it continues to amaze us. And the picture exchange is GREAT!
We are off in a few days to a week at the beach prior to surgery, so have a happy 4th!!
Joe and Anne Zaengle (and Quentin, Annalise, and Lea) ========================================================================= Date: Wed, 24 Jun 1998 23:25:42 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Frank & Annette Contrino <contrino@BUFFNET.NET> Subject: Re: Update on IEP and Apnea Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
>- We passed around pictures of Quentin, action - bike riding, >T-ball, gym, etc.
Good idea to show them what Quentin can do! We recently had our meeting with our school district to decide whether Nicole would enter kindergarten and what type of class she would be in. Our best salesperson was Nicole herself! She showed off all the things she had cut and made in preschool, and how she wrote her name, etc. The team was quite impressed (she's definitely a show-off and chatter box). She'll be attending a regular kindergarten class in the fall and we're all quite pleased about that.
Oh yeah, we even more recently had our annual craniofacial team review (or should I say day long doctor appointment, yuck!). Nicole is doing well, and there are no plans for anything to be done at this time. She even let the dental group clean her teeth, etc. (much to my surprise). She does have an extra tooth, but her bite is aligned (for now) so they'll wait to see what happens when her permanent teeth start coming in. Next it's the hand surgeon. That may not go as well...
Frank Contrino contrino@buffnet.net ========================================================================= Date: Thu, 25 Jun 1998 21:42:44 +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: shoulders Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
At 11:26 AM 24/06/98 -0400, you wrote: >Rosemarie also has this limited reach above the head. She's a non-swimmer >though so not much help there. >George Starr >
Welcome back George. We have missed your words of wisdom. :-)
Ann NZ ========================================================================= Date: Thu, 25 Jun 1998 21:42:55 +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: Update on IEP and Apnea Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
Kia Joe and Anne
Congratulations on such a well organised and structured IEP meeting. That number of people would have totally intimidated me!! I for one can learn from your report on it. Thank you.
>speech were covered in detail with the Drs. Surgery is July 9. >Quentin's last surgery was about 2 and 1/2 years ago when he was really >just a toddler so we could really use some advice on how you prepare a 5 >year mentally for a surgery.
With Amy we found that a year's break had left her not remembering the "bad" times but remembering the people and the fun she had had, so we didn't have to deal with heaps of negative memories. We did remind her of how she had been after the surgery - both hands bandaged, etc, so she would be prepared for when she woke up. Straightforward facts, nothing emotional to wind her up (or down), letting her know what would happen with her when she got to hospital, prior to the op, and what would be happening afterwards. As she had attended clinics at the hospital between-times we had made a point of visiting "her" ward to renew old acquaintances with nursing staff - even the cleaners remembered her!
Maybe you could arrange a visit to the ward so Quentin will know where he is going and what to expect. ??
Amy has had no Apert-related surgeries since she was 4+1/2 yrs old. One operation to remove a large splinter at age 6yrs - she quite enjoyed it as she was only in for two nights, it was a different hospital, and was quite exciting for her (except for the pain of the event at the time and the anxiety of getting to the doctor and then the hospital, and the fact we weren't admitted until 1.30am and were both VERY tired). Another 15minute op two months ago (age 7yrs) for grommets - she was anxious but nothing excessive. However, she had gas and now refuses to have any more surgery because she hated the gas - we are trying to get her to consider having her fingers "streamlined" so that she will be prepared to discuss it with her surgeon when we see him in a couple of weeks. She has not expressed concern about the surgery, just the gas - she has talked about having EMLA (she evens knows its name) and having a needle instead.
So, to cut a long story short, we prepare Amy by giving her the facts.
All the best - and do enjoy your break.
Regards, Ann NZ Had the shortest day on Monday and looking forward to a bit more sunlight. ========================================================================= Date: Thu, 25 Jun 1998 09:11:10 -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: "Zaengle, Joseph D" <Joseph.Zaengle@UNISYS.COM> Subject: Re: Update on IEP and Apnea MIME-Version: 1.0 Content-Type: text/plain; charset="iso-8859-1"
Thanks for your good advice...we're going to get started soon!
-----Original Message----- From: Howard & Ann [SMTP:howrdnan@IHUG.CO.NZ] Sent: Thursday, June 25, 1998 05:43 To: APERT@LISTSERV.AOL.COM Subject: Re: Update on IEP and Apnea
Kia Joe and Anne
Congratulations on such a well organised and structured IEP meeting. That number of people would have totally intimidated me!! I for one can learn from your report on it. Thank you.
>speech were covered in detail with the Drs. Surgery is July 9. >Quentin's last surgery was about 2 and 1/2 years ago when he was really >just a toddler so we could really use some advice on how you prepare a 5 >year mentally for a surgery.
With Amy we found that a year's break had left her not remembering the "bad" times but remembering the people and the fun she had had, so we didn't have to deal with heaps of negative memories. We did remind her of how she had been after the surgery - both hands bandaged, etc, so she would be prepared for when she woke up. Straightforward facts, nothing emotional to wind her up (or down), letting her know what would happen with her when she got to hospital, prior to the op, and what would be happening afterwards. As she had attended clinics at the hospital between-times we had made a point of visiting "her" ward to renew old acquaintances with nursing staff - even the cleaners remembered her!
Maybe you could arrange a visit to the ward so Quentin will know where he is going and what to expect. ??
Amy has had no Apert-related surgeries since she was 4+1/2 yrs old. One operation to remove a large splinter at age 6yrs - she quite enjoyed it as she was only in for two nights, it was a different hospital, and was quite exciting for her (except for the pain of the event at the time and the anxiety of getting to the doctor and then the hospital, and the fact we weren't admitted until 1.30am and were both VERY tired). Another 15minute op two months ago (age 7yrs) for grommets - she was anxious but nothing excessive. However, she had gas and now refuses to have any more surgery because she hated the gas - we are trying to get her to consider having her fingers "streamlined" so that she will be prepared to discuss it with her surgeon when we see him in a couple of weeks. She has not expressed concern about the surgery, just the gas - she has talked about having EMLA (she evens knows its name) and having a needle instead.
So, to cut a long story short, we prepare Amy by giving her the facts.
All the best - and do enjoy your break.
Regards, Ann NZ Had the shortest day on Monday and looking forward to a bit more sunlight. ========================================================================= Date: Thu, 25 Jun 1998 20:38:26 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Elizabeth de Silva <lizsilva@SRV1.TELCONET.NET> Subject: Re: Brooke MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Steve, Stacy and Brooke: sorry to hear you are having such a hard time. Our prayers are with you and we hope Brooke could be home soon.
Elizabeth ========================================================================= Date: Thu, 25 Jun 1998 20:43:43 -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: Elizabeth de Silva <lizsilva@SRV1.TELCONET.NET> Subject: Re: updated mailing & birthday list MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Laurie: thank you for taking the time to do this. It is really helpful. THANKS!
Elizabeth
Laurie Bailey wrote:
> Hey guys: > > I put together a similar spreadsheet as was shown before. I attached > it to > this message. It has an updated birthday list as to what I have in my > records. > > Those of you concerned about me wearing my self out, please don't > worry. > Mostly, my job is in the late afternoons and nights. I am a restaurant > > manager for Chili's Grill & Bar. So, I close the restaurant alot. This > > gives me alot of time to spend with my kids. I don't always see my > husband > but, we see each other enough on my days off or when I happen to open > the > restaurant and am home in the evenings. I've been doing the restaurant > > thing for 8 years now (4 in management) so, my body is used to staying > up > late and getting up early. Although, my kids usually don't get up till > 8:30 > or 9:00 (even my 4 month old!). I am also a pretty organized person > so, I > have lists of things I do every day to keep my house in order and get > the > extra things like read my email and work on my creative memories books > and > so on. > > So, don't worry about me. I'll be just fine. (I also know how to ask > for > help from my mom if I need it.) > > Laurie Bailey > jkb@elpaso.net > > > ------------------------------------------------------------------------------------------------------------- > > > > > ========================================================================= Date: Thu, 25 Jun 1998 14:18:44 -0400 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Don Sears <dsears@SCRS.STATE.SC.US> Subject: Re: Keep on! Comments: To: =?iso-8859-1?Q?=27W=FChrer_Alexandra=27?= <alexandra.wuehrer@kfunigraz.ac.at> MIME-Version: 1.0 Content-Type: text/plain; charset="iso-8859-1" Content-Transfer-Encoding: 8bit
Hi Alexandra -
Thank you for writing, and thank you especially for helping your friends. Yes, it probably will be hard on everyone, but the hardest part is behind already - the initial shock and grieving for the normal child that did not come, and the acceptance of the one who did come. Every child is different and really the only thing we can do for them is to give them a positive self-image and the skills to be patient with others. Kids will always be cruel to other kids, and will find something wrong with even 'normal' kids - too fat, too skinny, too tall, too short, glasses..... the key is to provide the child with a way to cope with this. The school kids may surprise you and treat Alexander very well.
Please tell them they are welcome to contact us at any time through the Intenet or regular mail. We will be very happy to share what we know with them, and thank you very much for helping them!
Yours, Don
> -----Original Message----- > From: Wührer Alexandra [SMTP:alexandra.wuehrer@kfunigraz.ac.at] > Sent: Monday, June 22, 1998 7:46 AM > To: catndon@apert.org > Subject: Keep on! > > Dear Cathie and Don!! > > Well, let's start with the way I got to your homepage: > The neighbours of my boyfriend have got a boy (4 or 5 years, I'm sure > about > this) born with the Apert-Syndrom and since we can now access the > Internet > directly from our rooms I surfed around wondering what causes this > Syndrom > and if there are many people who are affected by it. > > We live in Austria (not Australia but the tiny little country in the > middle > of Europe) and it was very, very difficult to get any good > informations > about this Syndrom, but they managed to get used to the operations and > to > the strange looks in the faces of the people who see Alexander (that's > his > name). I don't know if they want to contact your group, but I will > give > them the informations you published so that they can decide for > themselves. > They have had almost the same problems as you, but from the way you're > writing them down I suppose it was not that bad as it was for them, > maybe > because they had'nt such wonderful persons around them as you had (the > nurse...). They knew that something was wrong when the doctor took the > baby > away with a strange look in his eyes. They really wanted to have that > baby > (it was the third one) but when the husband got the first glimpse on > it he > broke down and cried. They didn't know anything about it because the > doctor > had'nt told them anything. It took them very long to accept that their > baby > was handicapped. But the worst thing were the operations, the pain and > most > of all the way people react when they see him. > > I have to admit that I was also shocked when I saw him the first time > and I > think you can immagine how I was desperate and how my heart break for > that > tiny little creature knowing what would expect him. But when he grew > up I > noticed how cute he was, he is extremely intelligent - probably due to > the > way his parents treat him - and such a nice boy! But what will happen > when > he get's to school? We live in a small village and there are no > teachers > who know how to handle such intelligent kids and I doubt that they > know how > to react when they see him the first time. Let's tell it like it is: > he > looks different and the children will certainly react in the way they > always do. > > Well, the only thing I wanted to write you - I know, I always write > too > much - was that I admire what you do and that I am sure you helped a > lot of > people. Go on doing this!!! > > Yours Alexandra > > *************************************************************** > Wührer Alexandra > Wienerstraße 58A/WE 32 > 8020 Graz > E-Mail: alexandra.wuehrer@kfunigraz.ac.at > Tel. Nr.: 0676/4132897 > *************************************************************** ========================================================================= Date: Thu, 25 Jun 1998 11:30:00 -0700 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "Pulido, Laura" <PulidoL@OR.CSMC.EDU> Subject: Picture Exchange - Did everyone get Martha's? MIME-Version: 1.0 Content-Type: text/plain
Hello everyone,
Please let me know if you have not received Martha's picture and thank you very much for sending yours.
Laura ========================================================================= Date: Thu, 25 Jun 1998 21:22:15 EDT Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "<George Siebert>" <GSieb91515@AOL.COM> Subject: Re: Update on IEP and Apnea Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Joe and Anne-
Thank you so much for the helpful info. We are a few years away but I will definately file this for future reference. It definately pays to have all your "ducks in a row". You did a great job of outlining what to key in on and be successful. I'm so glad everything worked in your favor. I have heard of horror stories at these meetings. Best wishes for continued success with the school system. Thanks again for the great info.
Brenda Houston ========================================================================= Date: Thu, 25 Jun 1998 22:24:57 -0400 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Leanne Maclean <lmaclean@NETCOM.CA> Subject: birthday wishes MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii
Just wanted to say thankyou to all who wished Amy a Happy 6th Birthday. I read all the letters to her and she was thrilled. She read parts of them herself! It was wonderful to be able to show her pictures of the people they came from in her album!
A belated Happy 9th Birthday to Melissa. Hope you enjoyed your movie. We hope to go and see it soon.
Amy received a 'Snow White' set as a gift and insists on calling the Prince Carmen Rae - I explained that Carmen Rae is a girl but that doesn't matter, Amy loves the name. Robin she loved the fact that you addressed the letter to her.
Hope everyone is well, Leanne and Amy ========================================================================= Date: Thu, 25 Jun 1998 23:23:38 -0400 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: foster <foster@ICONTECH.COM> Subject: Discrimination Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
Frank, Sorry to have not wished all you Dads out there a happy Fathers Day.Better late than never so HAPPY FATERS DAY. Also I wanted to also say how sorry I am to hear that you broke your finger playing ball. Hope it is doing better.
Hope everyone else is doing fine out there.
Karen(PA) ========================================================================= Date: Fri, 26 Jun 1998 00:02:22 -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: Laurie Bailey <jkb@ELPASO.NET> Subject: Re: Apert Comments: To: Christy Louden <clouden@camalott.com> MIME-Version: 1.0 Content-Type: multipart/mixed; boundary="----=_NextPart_000_01BDA095.B198E300" Content-Transfer-Encoding: 7bit
This is a multi-part message in MIME format.
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Christy,
We live in El Paso, Illinois (much smaller than El Paso, TX).
I can give you some information on hand surgeries but, I will also post this to the listserver for Apert's for those to respond to you about casts.
Jacob has had bandages for all his hand surgeries. As far as therapy goes, we were given some games and exercises to do with him at home. I've found that letting him explore and use them in day to day activities has done a world of good. I still try to move his digits to exercise the muscles that are not used to moving.
As far as early intervention, we were involved with a program called SPICE through the Marc Center in Bloomington, IL. After a couple of testing sessions and discussions with the providers. We all decided that Jake didn't require any of their services at the time. The only thing they suggested we receive from them was the therapy on his hands and that we get from his hand surgeon. They found his gross motor skills great and that there wasn't a need for speech therapy at the time. The intervention goes to age 3. Jacob is already 2. When he turns 3, he will be enrolled in a program called "Bright Beginnings" through our school district. There he will receive any therapies he may need (OT, PT, or ST).
I'm also attaching the information I got from Leanne on the keyboard for you.
If I can answer any more questions, feel free to ask.
Laurie Bailey jkb@elpaso.net
---------- > From: Christy Louden <clouden@camalott.com> > To: jkb@elpaso.net > Subject: Apert > Date: Wednesday, June 24, 1998 10:17 AM > > Laurie, > > While lurking on the Apert listserv (I'm the Asst. Dir./Social Worker for > an ECI program in Abilene, TX.), I noticed that you have El Paso in your > e-mail address. Do you live in El Paso, TX? Who is the hand doctor you > use? Tyler, the baby I work with is going to have surgery ant the end of > next month and I've been busy trying to prepare her for what it may be like > and what to expect when he comes home. We (the O.T., mom, and myself) are > also wondering about therapy in the home vs. the rehab center for a month > or so following the surgery. I have read a lot of the parents say that > their children's hands were bandaged. Tyler's mom says that he won