========================================================================= Date: Mon, 13 Jan 1997 22:53:29 -0700 Reply-To: Information exchange for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Patricia Bacon <baconptf@TELUSPLANET.NET> Subject: bone age Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

Hi folks. My daughter will be having an orbital osteotomy done within the next year. I understand my daughter's surgery timing depends (in part) on skeletal maturity. What is that exactly? How is it measured? What are the indicators ?

I'm looking for some nitty gritty technical information to help me understand my daughter's situation.

The rest of the timing will be determined by the state of her permanent teeth. If the adult tooth buds have not yet descended into the maxilla, then the surgery cannot take place. This will be seen via xrays which we will have done in March. I have heard it said that a kid's face hasn't fully developed by age 5 or 6? Could anyone clarify this for me?

The situation with my daughter is that the surgeon has to move the orbit, which involves cutting bone around the eye. I've been told that the eye area reaches maturity around age 4-5. But this doesn't seem logical to me since the rest of the face changes so much even into adolescence.

I'd appreciate it if anyone could shed some light on this for me. Many thanks Pat Bacon, Calgary ========================================================================= Date: Tue, 14 Jan 1997 06:43:04 -0600 Reply-To: Information exchange for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Bob Horning <Bob.Horning@CORP.HONEYWELL.COM> Subject: Adult surgery

From: Horning Bob on Tue, Jan 14, 1997 6:40 AM Subject: Adult surgery To: Apert Listserver

Rosemarie & George,

I just remembered an article we saw some years ago that may be of interest to Rosemarie. A couple years after Krista was born there was an article in - I think - Good Housekeeping about a woman with Crouzon's. She did not even get the diagnosis until she was an adult, so she went through the surgery in her mid-twenties if I remember correctly. I think it took her quite a while to recover, but she felt it had been worth it. There was a big change in her before and after appearance. I don't remember if her breathing, etc. was discussed.

That was the first thing we had ever seen (outside of medical books) about anything close to Aperts. I don't know the date of the article, but it would have to be sometime after Krista was born (July 1987). It should be pretty easy to find at a local library.

Bob Horning Savage, MN horning_bob@htc.honeywell.com ========================================================================= Date: Tue, 14 Jan 1997 10:19:09 EST Reply-To: Information exchange for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "Amy H. Irvin" <76121.202@COMPUSERVE.COM> Subject: Another Adult contact

Dear Friends, Kathy Riley is a friend who we met through our Geneticist soon after Alex was born. She is an adult with Apert, and is a pediatric occupational therapist for children with special needs. She just got her computer on-line but hasn't subscribed to the listserv yet. She asked me to give her e-mail address so that anyone can contact her in the mean time. Here it is: 105574.3156@compuserve.com

Until next time, Amy Irvin ========================================================================= Date: Wed, 15 Jan 1997 08:44:24 -0800 Reply-To: Information exchange for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jim Younkin <jim@PHILLYDINE.COM> Subject: Sara's Surgery Last Week MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

All,

Thank you for your prayers and kind words. Sara came home last Friday and had her stitches out yesterday. She is doing great!

The doc said her swelling would continue to go down over the next week, and he was very pleased with her progress. Her forehead sits over top of her eyes now, and her head is not as tall. It is nice and round and her hair is just starting to grow back (she looks like a peach!).

We scheduled an O/R for April to work on her fingers. XRays and and consult will be in February.

I hope I've conveyed our experience clearly for any of you preparing for this. If I can answer any questions for you, please call us (609-728-7578) anytime.

Jim and Kelly Younkin ========================================================================= Date: Wed, 15 Jan 1997 13:31:45 -0500 Reply-To: Information exchange for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Tony & Sandy Deakins <TDeakins1@AOL.COM> Subject: Re: Adult surgery

Kristi- Didn't mean to imply that one's threshold for pain was the principal issue; however, had Casey suffered any appreciable amount of pain during her first advancement, we would be very hesitant to send through another round. The question I was struggling with was to what degree to the individual "techniques" of surgeons contribute to the comfort or discomfort of the patient in these events? Specific to mid-face advancement, I have spoken with parents and patients both of whom, as a group, describe a range of sentiments toward the procedure. Also, there seems to be about as many who have suffered substantial pain as those who recall very little pain associated with their surgery. Again, when Casey had her's, the staph infection she contracted in the hospital caused more aggravation and consternation than did the surgery. We wish you well with the nasal reconstruction. I never really appreciated br eathing until I saw what a struggle it was for Casey. I have an entirely different view of it, now. Tony :-) ========================================================================= Date: Wed, 15 Jan 1997 19:06:28 GMT Reply-To: Information exchange for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Martin Hirigoyen <hirig@MAILBOX.CO.UK> Subject: Re: Sara's Surgery Yesterday Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

At 15:23 13/01/97 -0500, you wrote: >Kristi, >> I still wouldn't go thru the jaw surgery again. When I had my first >> midface/jaw advancment, my midface and jaw were moved 3/4 of an inch >forward. >> My plastic surgeon took bone from my right hip and shin. I am skeptical >about >> using banked bone. I've never had any problems with infections. >I don't know as of yet, This was our first meeting with the "TEAM", I would >guess she will wait until may or june, we won't hear anything for about 3 >weeks, and it will be a couple of months after that before anything is >scheduled. It's a lot to calculate on right now!! I'm sure she will read >all of this over and think a little harder about it. >Thanks >George > >p.s. It's Cold here also hit one below zero this morning!!! >Burrrrrrr....... > >> >> I was told by my plastic surgeon (world re-nown) that I had to have the >second >> advancement before I was 30 yrs. old. >> >> I am very surprised that the doctors say three weeks recovery for each >> surgery. Are they going to use donor sites from Rosemarie or use banked >> bone?? When will her first surgery be scheduled? >> >> I am not prone to getting sick. I might get a cold twice a year. In >1996, I >> wasn't sick at all. We've had some illness in my family this winter but >so far >> I haven't caught anything. >> >> Hugs, >> Kristi in the deep freeze :-) > >

Dear sir/madam

Please would you kindly remove our name form your mailing list, as the previous correspondent no longer uses this mailbox.

Thank you. ========================================================================= Date: Wed, 15 Jan 1997 19:07:04 GMT Reply-To: Information exchange for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Martin Hirigoyen <hirig@MAILBOX.CO.UK> Subject: Re: Sara's Surgery Yesterday Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

At 16:42 13/01/97 -0800, you wrote: >Marianne, > >Thanks for the wishes... Sara is doing very well. She came home Friday >and the swelling is much better. > >As far as siblings, we have two others...7 y/o son, Jordan and 3 y/o >daughter, Katie. Sweet kids, and spoiled to death by both sets of >parents that took turns with them. Both parents came from out of town (4 >hours) to stay with the kids while Kelly and I were with Sara around the >clock (taking turns of course!). > >- Jim >Dear sir/madam

Please would you kindly remove our name form your mailing list, as the previous correspondent no longer uses this mailbox.

Thank you. > ========================================================================= Date: Wed, 15 Jan 1997 19:07:22 GMT Reply-To: Information exchange for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Martin Hirigoyen <hirig@MAILBOX.CO.UK> Subject: Re: Sara's Surgery Yesterday Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

At 16:52 13/01/97 -0800, you wrote: >Mary Rus, > >>>what did Sara experience that warranted the orbital advancement at 9 months of age?<< > >With Aperts her hear was growing upwards instead of forward which >presents potential pressure problems for the brain, also her eyes are not >protected so eye injuries could be a problem as well. But probably the >most significant factor was that at 9 months the bones are still very >pliable (yet firmer then at 3 months) so they much easier to work with >and give the best shaping possible. I expect it will be easier in future >surgeries if the head is shaped properly earlier on, it will give them >more to work with. > >Believe me, even though I worry about Sara's future and acceptance by >other children, I don't think I would put her thru this purely for >cosmetic reasons. Still something I am struggling with. > >Anyway the doctors at CHOP have a plan when surgeries will occur (largely >dependant on how Sara develops), next will be her fingers. Then her >thumbs at age 4 (approx). The next craniofacial (orbital or midface) >depends on how she develops. The midface sounds even worse that the >orbital advancement. As far as the term "distraction" this may be another >term for the orbital advancement, I don't know for sure. > >- Jim > >Dear sir/madam

Please would you kindly remove our name form your mailing list, as the previous correspondent no longer uses this mailbox.

Thank you. ========================================================================= Date: Wed, 15 Jan 1997 19:09:10 GMT Reply-To: Information exchange for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Martin Hirigoyen <hirig@MAILBOX.CO.UK> Subject: Re: Adult surgery Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

At 13:31 15/01/97 -0500, you wrote: >Kristi- >Didn't mean to imply that one's threshold for pain was the principal issue; >however, had Casey suffered any appreciable amount of pain during her first >advancement, we would be very hesitant to send through another round. The >question I was struggling with was to what degree to the individual >"techniques" of surgeons contribute to the comfort or discomfort of the >patient in these events? Specific to mid-face advancement, I have spoken >with parents and patients both of whom, as a group, describe a range of >sentiments toward the procedure. Also, there seems to be about as many who >have suffered substantial pain as those who recall very little pain >associated with their surgery. Again, when Casey had her's, the staph >infection she contracted in the hospital caused more aggravation and >consternation than did the surgery. >We wish you well with the nasal reconstruction. I never really appreciated br >eathing until I saw what a struggle it was for Casey. I have an entirely >different view of it, now. >Tony :-) > >Dear sir/madam

Please would you kindly remove our name form your mailing list, as the previous correspondent no longer uses this mailbox.

Thank you. ========================================================================= Date: Wed, 15 Jan 1997 19:08:39 GMT Reply-To: Information exchange for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Martin Hirigoyen <hirig@MAILBOX.CO.UK> Subject: Re: Adult surgery Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

At 16:25 14/01/97 -0500, you wrote: >Hi Tony, >It wasn't the agony and the pain that was a factor in the decision. I can >deal with the pain and the agony. I have a very high tolerance to pain. My >physical well-being was the deciding factor. The day before my midface >advancement, I weighed 75 lbs. I had to have surgery 17 days later to release >two skin grafts. The night before that surgery, I weighed 59 lbs. We >estimated that I probably lost around 20 lbs. in total. It took me a long >time to re-build my strength and re-gain the weight I lost. > >The important thing to me now is to get my nasal reconstruction done. I >figure that I'll have surgery sometime late this spring on my nose. > >Hugs, >Kristi :-) > >Dear sir/madam

Please would you kindly remove our name form your mailing list, as the previous correspondent no longer uses this mailbox.

Thank you. ========================================================================= Date: Wed, 15 Jan 1997 19:08:12 GMT Reply-To: Information exchange for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Martin Hirigoyen <hirig@MAILBOX.CO.UK> Subject: Re: Another Adult contact Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

At 10:19 14/01/97 EST, you wrote: >Dear Friends, > Kathy Riley is a friend who we met through our Geneticist soon after Alex >was born. She is an adult with Apert, and is a pediatric occupational therapist >for children with special needs. She just got her computer on-line but hasn't >subscribed to the listserv yet. She asked me to give her e-mail address so that >anyone can contact her in the mean time. Here it is: > 105574.3156@compuserve.com > > Until next time, > Amy Irvin > >Dear sir/madam

Please would you kindly remove our name form your mailing list, as the previous correspondent no longer uses this mailbox.

Thank you. ========================================================================= Date: Wed, 15 Jan 1997 19:08:50 GMT Reply-To: Information exchange for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Martin Hirigoyen <hirig@MAILBOX.CO.UK> Subject: Re: Sara's Surgery Last Week Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

At 08:44 15/01/97 -0800, you wrote: >All, > >Thank you for your prayers and kind words. Sara came home last Friday and had her >stitches out yesterday. She is doing great! > >The doc said her swelling would continue to go down over the next week, and he was >very pleased with her progress. Her forehead sits over top of her eyes now, and her >head is not as tall. It is nice and round and her hair is just starting to grow >back (she looks like a peach!). > >We scheduled an O/R for April to work on her fingers. XRays and and consult will be >in February. > >I hope I've conveyed our experience clearly for any of you preparing for this. If I >can answer any questions for you, please call us (609-728-7578) anytime. > >Jim and Kelly Younkin > >Dear sir/madam

Please would you kindly remove our name form your mailing list, as the previous correspondent no longer uses this mailbox.

Thank you. ========================================================================= Date: Wed, 15 Jan 1997 19:07:59 GMT Reply-To: Information exchange for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Martin Hirigoyen <hirig@MAILBOX.CO.UK> Subject: Re: Adult surgery Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

At 06:43 14/01/97 -0600, you wrote: >From: Horning Bob on Tue, Jan 14, 1997 6:40 AM >Subject: Adult surgery >To: Apert Listserver > >Rosemarie & George, > >I just remembered an article we saw some years ago that may be of interest to Rosemarie. A couple years after Krista was born there was an article in - I think - Good Housekeeping about a woman with Crouzon's. She did not even get the diagnosis until she was an adult, so she went through the surgery in her mid-twenties if I remember correctly. I think it took her quite a while to recover, but she felt it had been worth it. There was a big change in her before and after appearance. I don't remember if her breathing, etc. was discussed. > >That was the first thing we had ever seen (outside of medical books) about anything close to Aperts. I don't know the date of the article, but it would have to be sometime after Krista was born (July 1987). It should be pretty easy to find at a local library. > >Bob Horning >Savage, MN >horning_bob@htc.honeywell.com > >Dear sir/madam

Please would you kindly remove our name form your mailing list, as the previous correspondent no longer uses this mailbox.

Thank you. ========================================================================= Date: Wed, 15 Jan 1997 19:07:40 GMT Reply-To: Information exchange for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Martin Hirigoyen <hirig@MAILBOX.CO.UK> Subject: Re: bone age Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

At 22:53 13/01/97 -0700, you wrote: >Hi folks. My daughter will be having an orbital osteotomy done within the >next year. I understand my daughter's surgery timing depends (in part) on >skeletal maturity. What is that exactly? How is it measured? What are the >indicators ? > > >I'm looking for some nitty gritty technical information to help me >understand my daughter's situation. > >The rest of the timing will be determined by the state of her permanent >teeth. If the adult tooth buds have not yet descended into the maxilla, >then the surgery cannot take place. This will be seen via xrays which we >will have done in March. >I have heard it said that a kid's face hasn't fully developed by age 5 or 6? > Could anyone clarify this for me? > >The situation with my daughter is that the surgeon has to move the orbit, >which involves cutting bone around the eye. I've been told that the eye >area reaches maturity around age 4-5. But this doesn't seem logical to me >since the rest of the face changes so much even into adolescence. > >I'd appreciate it if anyone could shed some light on this for me. >Many thanks >Pat Bacon, Calgary > >Dear sir/madam

Please would you kindly remove our name form your mailing list, as the previous correspondent no longer uses this mailbox.

Thank you. ========================================================================= Date: Wed, 15 Jan 1997 19:08:25 GMT Reply-To: Information exchange for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Martin Hirigoyen <hirig@MAILBOX.CO.UK> Subject: Re: Adult surgery Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

At 12:04 14/01/97 -0500, you wrote: >I have been monitoring the various discussions regarding pros- and cons- of >mid-face advancement surgery. Most of the cons- appear to be centered on the >pain and anguish some have suffered with this surgery. The pros- are >consistently normalized appearance and improved upper respitory function. > >The one mid-face that our daughter Casey went through was remarkably pain >free for her. She did contract an infection which drove us all to >distraction in its persistence, but, still, while it was some discomfort to >her, to be sure, nonetheless I would not categorize any of it as being >"painful". Casey will undergo another mid-face this coming summer and we >hope for similar outcomes as were achieved in the first. She will probably >have her last mid-face when she is fourteen (she is presently ten). > >The benefits produced by this surgery for Casey have been life-critical and >even the more minimal accomplishments have been highly valuable. I wonder if >the differences in experience have something to do with the surgeon or, >possibly, the techniques of one surgeon versus another. I don't know and >probably would not understand the answer were it furnished. I do know that, >while grossly inconvenient and bothersome for Casey and her family, we >actually look forward to the outcomes of the next surgery. Even Casey >verbalizes her expectations and "requirements". > >The issue is, no doubt, an interesting one. >Tony Deakins > >Dear sir/madam

Please would you kindly remove our name form your mailing list, as the previous correspondent no longer uses this mailbox.

Thank you. ========================================================================= Date: Wed, 15 Jan 1997 20:01:15 -0500 Reply-To: Information exchange for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "Donald A. Sears" <CatnDon@AOL.COM> Subject: Fwd: Rejected posting to APERT@LISTSERV.AOL.COM

--------------------- Forwarded message: From: ARUS@ria-emh2.army.mil To: catndon@aol.com Date: 97-01-15 09:42:01 EST

CATHY AND DON,

I AM HAVING DIFFICULTIES SENDING MY MESSAGE THROUGH THE LIST SERVER, COULD YOU PLEASE FORWARD THIS FOR ME.

THANK YOU,

ALLEN RUS (ADRIENNE RUS' FATHER)

HI EVERYONE!

MY NAME IS ALLEN RUS, I AM ADRIENNE RUS' PROUD FATHER. MOST OF YOU HAVE PROBABLY SEEN MESSAGES FROM MY WIFE MARY ON SEVERAL OCCASIONS. I WANTED TO WRITE QUICKLY TO ASK FOR ADVICE FROM EXPERIENCED PARENTS REGARDING BREATHING DIFFICULTIES. AT TIMES ADRIENNE HAS DIFFICULTY BREATHING WHEN SHE IS IN A DEEP SLEEP, OUR PEDIATRICIAN HAS RECOMMENDED THAT SHE HAVE HER ADENOIDS AND TONSILS REMOVED (SHE IS ALSO ON THE THIRD SET OF EAR TUBES). MY QUESTION IS AS FOLLOWS, FOR CHILDREN THAT HAVE HAD THIS DONE, DOES THIS SIGNIFICANTLY IMPROVE THEIR BREATHING. I UNDERSTAND THAT THE FACIAL ADVANCEMENT PROCEDURE ALLEVIATES THIS PROBLEM TO SOME DEGREE BUT ADRIENNE IS ONLY TWO AND WE DON'T EXPECT THIS PROCEDURE FOR SOMETIME YET. IF THE TONSIL/ADENOID PROCEDURE IS NOT THAT BENEFICIAL WE DON'T WANT TO PUT HER THROUGH THE SURGERY AT THIS TIME. WE WOULD TRULY APPRECIATE ANY ADVICE AND FEEDBACK FROM EXPERIENCED PARENTS AND PATIENTS. MY E-MAIL IS arus@ria_emh2.army.mil

THANK YOU,

ALLEN RUS ========================================================================= Date: Wed, 15 Jan 1997 22:07:16 -0500 Reply-To: Information exchange for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Juile and Bob Sanchez <JSanc10676@AOL.COM> Subject: This and that...

Hello to all, its been a while since I checked in so I had some serious reading to do, Im all caught up now and thought I would send a hello or two. Welcome Marisa, Grandpa and family!! How nice it must be to have been able to access this page right after the birth!! I am continually amazed at the amount of info and knowledge that is pass thru these lines.

To Tony and Casey, by any chance did we meet in Indianapolis at the CCA retreat a few years back? I remember a Casey with Red hair??

We used Vitamin E on A.J.'s skull suture this past surgery and it made a big difference. The scar is much smoother. He has keloid scaring which makes every inscision line large and bumpy. The only problem we had with the Vitamin E was that if he had it on outside it would he would sunburn very fast. He wore alot of hats for awhile.

A.J.'s Midface advancement was in June and although it was 6 mths ago, reading all these posting made it seem just like the other day. He has healed well and other than his nose, has great improvment. (The bridge they built for his nose did not hold to the connector plate and the bone in his nose is crooked.) The greatest improvement has been with his eyes and his speech. With the midface they moved the bones up and out. This brought the eyes a bit closer together and in a better position. He still has limited up gaze but the eyes now work together better. This, along with creating more airway room has dramatically effected his speech. Prior to this surgery A.J. was quite hard to understand and used alot of sign language. He now talks a mile a minute and for the most part is very clear. He still has a trach but we are working on getting it out this spring. We are constantly amazed with this little boy.

Updated before/after pictures are soon to be on the way....

As many of you know, A.J. is adopted. We have often been asked if we knew then what we know now, would we have have taken this on.....well, who knows. All we do know is we like the people we have become because of what this little boy has taught us. We like the people we know and associated with because of what we have shared. The experiences we have had have shaped our lives and touched many people. For that we are forever grateful and wouldn't change it or trade it for a whole house full of "normal" children.

Marianne and Evan, the first couple days after surgery, We did not let Jazmyn up to see A.J., She was very concerned and worried that he was not okay. We had a long talk and on the 3rd day we went up to see him. He had no bandages whatsoever. She stayed only a few minutes and we had to spend awhile after the visit talking about everything. It did wonders for A.J. to see her. And she handled the whole thing really well. She was 6years old at that time. We did not have any family around to help with her and the baby's care so between my husband myself and a few wonderfully dedicated home nurses and a coulple friends, we mananged okay. The homecare nurses would come and stay at the hospital with A.J. so we could go home for a few hours.

Well thats all for now. Hello to all!! Best wishes to Mar Mar and family!!

We'll see you soon Joanna! Julie Sanchez ========================================================================= Date: Thu, 16 Jan 1997 06:54:49 -0600 Reply-To: Information exchange for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Bob Horning <Bob.Horning@CORP.HONEYWELL.COM> Subject: Re: Fwd: Rejected posting to APERT@LISTSERV.AOL.COM

Krista had much difficulty breathing for her first 9 years. Taking out her tonsils and adenoids was never mentioned. I'm not sure what we would have decided if it had been. The midface advancement (at age 8.5) really didn't do a lot for her breathing either. However, Krista was born with choanal atresia, which means her nose was completely grown shut with cartilage or bone. It had been removed but never really cleaned up and I suspect that had as much to do with her breathing as anything.

Last summer (age 9) they had to go back in to remove stints that were put in during the mid face advancement. While there, he did some cleaning and rebuilding of the inside of her nose. Now that made a difference! She could actually breath through her nose. Most people can't seem to appreciate what that means but I think anyone with Aperts, or an Aperts child or spouse can. She still breaths well.

We always worried about Krista's breathing, especially when she had a cold. However, during her many hospital stays (for example, after surgery) and her nose was swollen shut, the O2 saturation monitor was always well above the 90% mark, even when she seemed to have trouble breathing. So it seems that the breathing trouble was not really creating any problems as far as getting enough oxygen.

Bob Horning Savage, MN horning_bob@htc.honeywell.com _______________________________________________________________________________ From: Donald A. Sears on Wed, Jan 15, 1997 8:05 PM Subject: Fwd: Rejected posting to APERT@LISTSERV.AOL.COM To: Horning Bob; Information exchange for Apert Syndrome and other craniofacial a

--------------------- Forwarded message: From: ARUS@ria-emh2.army.mil To: catndon@aol.com Date: 97-01-15 09:42:01 EST

CATHY AND DON,

I AM HAVING DIFFICULTIES SENDING MY MESSAGE THROUGH THE LIST SERVER, COULD YOU PLEASE FORWARD THIS FOR ME.

THANK YOU,

ALLEN RUS (ADRIENNE RUS' FATHER)

HI EVERYONE!

THANK YOU,

ALLEN RUS ========================================================================= Date: Thu, 16 Jan 1997 08:04:58 -0500 Reply-To: Information exchange for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Tony & Sandy Deakins <TDeakins1@AOL.COM> Subject: Re: This and that...

Ah, yes; Indianapolis. The night they over-clorined the pool and we had to evacuate the children and, then, that same night, glued to the T.V. watching O.J. Simpson slowly tour the L.A. freeways with about 100 police in tow.

Yes, we met there and Casey is every bit as red headed now as she was then. She is ten, now and we're getting ready for her second mid-face.

All the recent dialog regarding mid-face surgery has had me thinking back to Casey's first one. On of the things we did which paid-off considerably while Casey was in the ICU was, before surgery, we worked on some hand-to-hand signals. Given that her head would be completely enclosed and that, while she could hear, she could not speak or see, we wanted to give her a means of communications. Simple stuff like scratch my palm means "No" and tap it slowly means "Yes". All one-handed because of the I.V.s and other "trash" hanging off of her during this period. We had signals for pain, sad, happy, hungry, dizzy, bathroom, and a few more. Soon after Casey's arrival, even the nurses had picked-up on this "hand-jive", as one of them called it. I think it helped them to get feedback from Casey.

The other thing we did (and will do again) is take a portable cassette player with a selection of her favorite music along with a collection of story tapes. The headphones could be easily adapted to fit over her bandage.

Well, so much for nostalgia, the next meeting, I hear, is in San Diego. That ought to be a 'hoot'.

Best to all, Tony Deakins ========================================================================= Date: Thu, 16 Jan 1997 07:30:19 -0600 Reply-To: Information exchange for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Bob Horning <Bob.Horning@CORP.HONEYWELL.COM> Subject: Breathing difficulty

From: Horning Bob on Thu, Jan 16, 1997 7:28 AM Subject: Breathing difficulty To: Apert Listserver

I just talked to Mary to make sure my recollection was good (she has the good memory in the family). I think she suffered more from Krista's breathing than I did. But she wasn't sure if we would have removed the adenoids and tonsils either.

One thing she reminded me of is that when Krista was in the hospital they always tilted the bed up a little to help her breathing. It took us quite a while to realize that we should do the same thing at home. We bought a wedge-shaped pillow (available at a medical supply store near you) and stuck that under her mattress. That did help some.

There were two things that contributed to the poor breathing. First, she didn't keep her mouth open. Second, her tongue tended to pull up to the roof of her mouth. On our other kids, the tongue tends to stay down where it belongs. So when she would lay horizontally (especially on her back) her mouth would be blocked pretty well, and she was breathing through what little opening she had in her nose. Lifting her head up helped both of those things. Gravity pulled the jaw and tongue down. It wasn't perfect, but it offered some relief and was a lot cheaper and less painful than surgery.

Bob Horning Savage, MN horning_bob@htc.honeywell.com ========================================================================= Date: Thu, 16 Jan 1997 09:08:31 -0600 Reply-To: Information exchange for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Go USA <gousa@OCP.KCMO.COM> Subject: Tonsils and Adenoid Surgery Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

Hi,

The following could be better explained by my wife Laura, with better details, but I wanted to hurry and get this off to you. If you want greater details, e-mail and I will ask her to reply giving better accuracy to statements.

Shawn had his tonsils and adenoids removed approximately 1.5 years ago. Shawn had a really rough time breathing at night with episodes of (Obstructive) Apnea frequently. This condition would worsen and even sometimes required hospitalization at times he had a cold. It is a condition that also put an extra burden on his heart as I understood it.

We are VERY glad that we had this surgery done, as it helped tremendously and we have not had any of the breathing problems or Apnea episodes since.

The recovery period as I remember was one of the worst since we are dealing with the already small airways being irritated.

Looking back, we think of this surgery as one we wouldn't want to have done without.

If you want more exact details, you can e-mail for more info.

Blessings to All!

Mike Allison gousa@ocp.kcmo.com

========================================================================= Date: Thu, 16 Jan 1997 10:54:24 EST Reply-To: Information exchange for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "Amy H. Irvin" <76121.202@COMPUSERVE.COM> Subject: AboutFace Annual Conference

Dear Friends, Just wanted to let you all know about the AboutFace Annual Conference that is coming up in April. For those of you who don't know about AboutFace, it is a international "support and information network concerned with facial differences". It was founded in Toronto, Ontario in 1985 . The U.S. office opened in 1991, and there are now more than 50 chapters around the U.S. AboutFace is recognized by the ACPCA(American Cleft Palate-Craniofacial Association) as the leading support organization for people with facial difference. AboutFace offers a quarterly newsletter, lending library of books and videos, networking, and soon will have ready an educational program for volunteers to present to school-aged children focusing on sensitivity to and acceptance of differences. They have a really good booklet available upon request called "Apert,Crouzon and other Craniosynostosis Syndromes". It is worth getting for your file. Contact About Face a (800)225-FACE (U.S.), (800)665-FACE (Toronto), or on the internet at AbtFace@aol.com. The website address is: http://www.io.org/~aface/aface.html The AboutFace Conference is held every year in conjunction with the ACPCA Conference (which is attended mostly by medical professionals). Some of the professionals often stay over for the weekend for the AboutFace Conference (which is attended by families and affected adults). I have attended the last 2 conferences and have met a lot of wonderful people, including a number of families with children with Apert. This year the conference will be held in New Orleans,Louisiana on April 12th and 13th. There are 3 workshop sessions on Sat. with 4 topics to choose from each session. On Sun. there are 2 workshops in the morning with a choice from 3 for the first and 4 for the second. There are exhibits and a bookfair to look at between sessions on Sat., and several wonderful guest speakers. Last year at the Sun. Networking Breakfast we had an Apert table with myself, my husband Dudley, Christine and Jack Clark, Yael Levi-Blasberg, and several others. I can't say enough about the benefits of attending the conference. Separate group activities are planned this year for the younger set including experiential learning for teens and arts and crafts for children ten and under. Programs for the kids will be running throughout the weekend for those who pre-register. For further information feel free to contact AboutFace. Or more from a parents perspective, I'm here. The conference fee includes breakfast, lunch , and coffee breaks both days. If you ask around, there are certainly organizations in you area that help out financially with sending parents to these type of conferences. Take care, and maybe I'll see you in New Orleans! Amy ========================================================================= Date: Thu, 16 Jan 1997 10:49:09 -0800 Reply-To: Information exchange for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Dwane R <dwane@AIRMAIL.NET> Subject: test Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

test

******************** Dwane Revier Arlington, Tx. dwane@airmail.net ********************* ========================================================================= Date: Fri, 17 Jan 1997 09:52:47 -0600 Reply-To: Information exchange for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Bob Horning <Bob.Horning@CORP.HONEYWELL.COM> Subject: Test - don't bother opening

From: Horning Bob on Fri, Jan 17, 1997 9:46 AM Subject: Test - don't bother opening To: Apert Listserver ========================================================================= Date: Fri, 17 Jan 1997 21:28:11 -0500 Reply-To: Information exchange for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Little One <KBRANSTETTER@DELPHI.COM> Subject: Re: Adult surgery MIME-version: 1.0 Content-type: TEXT/PLAIN; CHARSET=US-ASCII Content-transfer-encoding: 7BIT

Hi Tony, No offense taken here.

It was so funny after my midface/jaw advancement, a doctor in the ICU walked up to me a day after my surgery. He wanted to give me a shot of morphine. I couldn't talk because my jaws were wired and I had a tracheostomy so I shook my head "No." He ended up going away after he couldn't talk me into the shot of morphine. <grin>

I am a mouth breather because I was born without a nose. My first nasal passage wasn't built until I was 4 yrs. old. When I sleep, I sleep on my side. It bothers me to sleep on my back. I have touse nasal tubes 24-7 for the next 16 or so months so that really cuts down on the airflow thru my nose.

I have been going thru my reconstruction of my permanent nose for a long time. I am anxious to get it done.

I am more than likely going to have surgery this spring or summer.

I plan to write a journal of my thoughts and feelings of gooing thru my 34th surgery. I am doing it for another listserv. Would you mind if I post it here? I plan to only post the journal once a week. I don't want to overwhelm anyone with email.

Hugs, Kristi :-) ========================================================================= Date: Sat, 18 Jan 1997 10:29:52 -0500 Reply-To: Information exchange for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "Donald A. Sears" <CatnDon@AOL.COM> Subject: Re: Adult surgery

Kristi, I'm sure we'd all love to have your journal.......... Best of luck......

Cat, Don, & Teeter ========================================================================= Date: Sat, 18 Jan 1997 19:15:05 -0500 Reply-To: Information exchange for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Frank & Annette Contrino <contrino@BUFFNET.NET> Subject: Re: Knee Pain? Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

Don,

Nicole has also complained of pain in her legs, particularly at night while she is trying to sleep. She never seems to tell us it's in her knees, but it could be. We end up having to rub her legs and/or give her some Tylenol to soothe her. The pediatrician has attributed it to growing pains and since it is so infrequent, we haven't pursued any other possible cause. If it's frequent or severe, then I'd really question the doctors. If not, they're probably right.

Frank ========================================================================= Date: Sat, 18 Jan 1997 23:43:05 EST Reply-To: Information exchange for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "Amy H. Irvin" <76121.202@COMPUSERVE.COM> Subject: Knee/Joint pain

Kathy, the OT with Apert has told me that she has had pain/stiffness in many of her joints,particularly upon arising in the morning, since she was around 8 years old. She exercises regularly to keep as limber as possible, but has to take analgesics on a regular basis. She says that because the joints of individuals with Apert are atypical, they tend to develop arthritis much earlier. In spite of the chronic pain/stiffness, Kathy says to tell you that she leads a very active life . She exercises daily and says that she gets much worse when she has to take a few days off for whatever reason. She said that when she was growing up the doctor's also told her that she was having growing pains. Interesting. ========================================================================= Date: Sat, 18 Jan 1997 23:57:28 EST Reply-To: Information exchange for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "Amy H. Irvin" <76121.202@COMPUSERVE.COM> Subject: Physical therapy

I just received a call from a Mom of a child with Apert I know in southern Ohio. She was concerned because her school district just called her the other day and told her that they were going to discontinue her son's Physical Therapy services because they are cutting services and they feel that he no longer needs PT in school. They violated her rights as they didn't go through proper procedure to get the IEP changed. She feels that he still needs PT at school. The school therapist says that he has improved so much that he doesn't need it at school, and whatever other problems he still has don;t impact on his ability to function in the school environment. I know she has a case regarding proper procedure but I don't believe that she can continue to justify school PT services considering the level of functioning he has at school. I think that the school is probably correct in their assertion that PT services cannot be based on medical need, particularly if it is meant to prevent him from losing flexibility. The reacon that she called me was that she thought that I might have, or know someone who had documentation regarding the joint problems (stiffness,pain) kids with Apert develop as they grow older. She thought that any such documentation might persuade the school to think twice. Any thoughts? I haven't heard of anyone keeping longterm data on these type of joint problems, Let me know if you have any ideas. Her meeting with the school officials is next Wednesday! Thanks, Amy Irvinl ========================================================================= Date: Tue, 21 Jan 1997 08:33:27 -0600 Reply-To: Information exchange for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "Allen & Mary J. Rus" <MRUS@RIA-EMH2.ARMY.MIL> Subject: Re: Breathing difficulty Mime-Version: 1.0 Content-Type: text/plain; charset=US-ASCII Content-Transfer-Encoding: 7bit

One more helpful hint... I have found that the small sized Breath-Right batches do help open up those breathing passages. You may want to try them.

______________________________ Reply Separator _________________________________ Subject: Breathing difficulty Author: Information exchange for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> at SMTP-DDN Date: 1/16/97 7:30 AM

From: Horning Bob on Thu, Jan 16, 1997 7:28 AM Subject: Breathing difficulty To: Apert Listserver

Bob Horning Savage, MN horning_bob@htc.honeywell.com ========================================================================= Date: Tue, 21 Jan 1997 20:08:25 GMT Reply-To: Information exchange for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Qing Gong <qing@ASRC.ALBANY.EDU> Subject: Re: Breathing difficulty Mime-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

> From MRUS@RIA-EMH2.ARMY.MIL Tue Jan 21 16:14:23 1997 > Mime-Version: 1.0 > Content-Transfer-Encoding: 7bit > Content-Description: cc:Mail note part > Date: Tue, 21 Jan 1997 08:33:27 -0600 > From: "Allen & Mary J. Rus" <MRUS@RIA-EMH2.ARMY.MIL> > Subject: Re: Breathing difficulty > To: APERT@LISTSERV.AOL.COM >

What are the Breath-Right batches? Where can I get them? Thanks.

Qing ========================================================================= Date: Tue, 21 Jan 1997 16:46:07 -0500 Reply-To: Information exchange for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: George Starr <daystar@IGLOU.COM> Subject: Re: Breathing difficulty MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit

They are strips that go across the nose (I think, never used them) that hold the airways open. Should be able to get them at a larger drugstore.

George

> What are the Breath-Right batches? Where can I get them? Thanks. > > Qing ========================================================================= Date: Tue, 21 Jan 1997 17:15:41 -0800 Reply-To: Information exchange for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jim Younkin <jim@PHILLYDINE.COM> Subject: Re: Breathing difficulty MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

George Starr wrote: > > They are strips that go across the nose (I think, never used them) that > hold the airways open. Should be able to get them at a larger drugstore. > > George > > > What are the Breath-Right batches? Where can I get them? Thanks. > > > > Qing

Breathe-Right is the brand. I think 'batches' is a typo. Was 'patch' the intended word?

I think they're referred to as nasal strips. There may be other brands besides Breathe-Right.

The strip goes over the nose sideways and stickey stuff adheres it on either side of the nose. Since the tension makes them want to lay flat, they actually tug up on the skin, in a lifting action. Lots of athletes use them so they must help somewhat. I've never tried them, but I may check into it for my daughter Sara (w/ Aperts). (My wife may have me try them at night for snoring, but that is another issue altogether!!!)

Jim Younkin ========================================================================= Date: Tue, 21 Jan 1997 16:41:12 -0600 Reply-To: Information exchange for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "Allen & Mary J. Rus" <MRUS@RIA-EMH2.ARMY.MIL> Subject: Re[2]: Breathing difficulty Mime-Version: 1.0 Content-Type: text/plain; charset=US-ASCII Content-Transfer-Encoding: 7bit

Qing,

I'm so sorry about the type - o, George is right, they are patches that can be bought at any large drug store. See what you think.

Mary

______________________________ Reply Separator _________________________________ Subject: Re: Breathing difficulty Author: Information exchange for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> at SMTP-DDN Date: 1/21/97 8:08 PM

What are the Breath-Right batches? Where can I get them? Thanks.

Qing ========================================================================= Date: Tue, 21 Jan 1997 21:49:27 -0500 Reply-To: Information exchange for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Judy Gibson <jgibson2@EROLS.COM> Subject: Introduction MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

Hi, my name is Judy Gibson. I'm a nurse in a neonatal ICU. I recently had the privilege of taking care of a little girl with Apert syndrome. She was recently discharged from our unit to an intermediate care hospital while awaiting surgery. I've learned a lot while taking care of her and I hope to learn more so I'll be better able to help the next family I meet whose baby has craniofacial differences.

About the breathing difficulties, my little patient had some problems with breathing too. She can't really breath through her nose much at all, and being a newborn had to learn to breathe through her mouth. Initially we had to keep an oral airway in her mouth so she could breathe without being intubated. We found that keeping a #8 french (size) feeding tube in her mouth helped her keep her tongue down so she could breathe. The feeding tube didn't keep her from nipple feeding. It took her a while to get the hang of stopping to take a breath, but once she'd done that, she really did well.

Judy