From: L-Soft list server at America Online (1.8c) Sent: Monday, August 25, 1997 1:24 PM To: Don Sears Subject: File: "APERT LOG9701D"
========================================================================= Date: Wed, 22 Jan 1997 08:09:31 -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: "Allen & Mary J. Rus" <MRUS@RIA-EMH2.ARMY.MIL> Subject: Re[2]: Sara's Surgery Yesterday Mime-Version: 1.0 Content-Type: text/plain; charset=US-ASCII Content-Transfer-Encoding: 7bit
Thanks for the additional information... Our Adrienne already went through this at 3 mos. We referred to this surgery as her cranial reconstruction (release of the fused sutures) and remolding of the head. Does Sara have to wear a molding helmet? If so, how long? I can share some lessons learned about the molding helmet if she does.
______________________________ Reply Separator _________________________________ Subject: Re: Sara's Surgery Yesterday Author: Information exchange for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> at SMTP-DDN Date: 1/15/97 7:07 PM
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: Tue, 28 Jan 1997 14:17:27 -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: George Starr <daystar@IGLOU.COM> Subject: Everyone okay? MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit
Just checking, it's been quiet around here. All's fine with the Starr's, Just another cold or two.. George Starr
http://members.iglou.com/daystar http://www.iglou.com/photos webmaster@firstamerica.com see http://www.firstamerica.com ========================================================================= Date: Tue, 28 Jan 1997 15:57:34 -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: Everyone okay? MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
George Starr wrote: > > Just checking, it's been quiet around here. All's fine with the Starr's, > Just another cold or two.. > George Starr > > http://members.iglou.com/daystar > http://www.iglou.com/photos > webmaster@firstamerica.com see http://www.firstamerica.com
The Younkin family is well too! Sara has had a cold andlabored breathing while she sleeps. I guess we'll just have to get used to it.
Also, there's a possibility that we may move to the Pittsburgh area. Any feelings about CHOP?
Also, if I take the new job we would have to change insurance carriers. We have been very pleased with the coverage we've received from Keystone (AmeriHealth) HMO, I was wondering if anyone had comments on either a)Health America (HMO) OR b)Point of Service Blue Cross (Select Blue).
As you know these surgeries aren't cheap. Any suggestions are welcome.
- Jim ========================================================================= Date: Tue, 28 Jan 1997 18:31:14 -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: Everyone okay? MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit
> The Younkin family is well too! Sara has had a cold andlabored breathing while she > sleeps. I guess we'll just have to get used to it. Great, except for the cold thing!!!
> > Also, there's a possibility that we may move to the Pittsburgh area. Any feelings >about CHOP? I've heard of them but that is about it. What I heard was good though.
> Also, if I take the new job we would have to change insurance carriers. We have
Check into pre-existing conditions, and maximum lifetime benifits. That's about all I can tell you, wish you luck.
Thanks George ========================================================================= Date: Tue, 28 Jan 1997 16:30:38 -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: Chad & Denise Graham <cgraham@INFOAVE.NET> Subject: surgery MIME-version: 1.0 Content-type: text/plain; charset="us-ascii"
Hi. Just wanted to let you know that we leave Wenesday morning for Kentucky to have Daryl's first hand surgery. We missed the other one in December for complications with Daryl's lungs. He has had RSV this week, so please pray that we are well enough not to miss this surgery! I'll let you know how it goes Monday or Tuesday! Hope everyone is feeling O.K. George & Rosemarie, We'll call you Wenesday when we get there. We are not sure were we are going to stay yet. The Ronald McDonald House is full. Talk to you soon.
Denise Graham ========================================================================= Date: Tue, 28 Jan 1997 19:55:31 -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: Carlos and Claudia Ize <ize@TACOMA.CEATLABS.OKSTATE.EDU> Subject: Artificial Joints
Hi everybody. I hope everybody is worm in this crazy cold weather. We have been out of circulation for a while, because Felipe had his fifth surgery on his hands, and I am doing my research. Therefore we have very little time to write. He now has 5 fingers on his left hand and 4 on his right hand. We are now waiting the left hand to heel, and see if it is going to be functional. We found out during his pre-op, that he does not have the joints of his finger. The doctor said that they are fused. I asked the doctor if he knows any technique to redo the joints, like the ones they do on the knee. He said that if this exists, he is not aware of it. Does any body knows anything about it? I know that they can replace several parts of the human body on this days, using titanium, plastic and so on. I was just wondering if anybody ever heard about artificial joints for the hands, and possibly for the toes. I asked his doctor when he is going to start surgery to separate his toes. He told me that the toes are not important, and we should concentrate on the fingers. We are a little bit concerned, because he is starting to walk, and if the doctor waits to long to start surgery on the toes, it is going another head ache to hold him. Could you please give me some input on how old the child has to be to start separating the toes.
I will keep you posted about his progress. Ize Family. ========================================================================= Date: Tue, 28 Jan 1997 21:19:12 -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: artificial joints MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
>>I was just wondering if anybody ever heard about artificial joints for the hands, and possibly for the toes.
I have a friend who has severe arthritis. She had joint replacement surgery done -- in her hands. I don't know if that was just the knuckle joints or if it was all the finger joints. I can ask the next time I see her.
Judy ========================================================================= Date: Tue, 28 Jan 1997 22:31:18 -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: Marianne Camous <CAMOUS@CHATHAM.EDU> Subject: Re: surgery
Denise, Good luck and godspeed! Evan got RSV on his 3rd postop day after his first craniofacial surgery (about 10 days ago). He had to go back to the ICU, then developed ear infections bilaterally, MRSA (methycillin resistant staph) in his trach....what a long strange trip it's been! Finally got him home yesterday , trying to settle into "normal" life, such as it is! hope all goes well for him- it's got to be tough having to do it out of town. Our thoughts and prayers will be with you!
Marianne