========================================================================= Date: Sun, 8 Feb 1998 03:17:35 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Juile and Bob Sanchez <JSanc10676@AOL.COM> Subject: Re: The opening for BJ's page Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
What incredible strong and loving family you have. Our thoughts and prayers are with you. I found this poem and thought I would pass it on.
A meeting was held quite far from Earth "It's time again for another birth," Said the angels to the Lord above "This special child will need much love," His progress may seem slow Accomplishments some he may not show And he'll require extra care from the folks he meets way down there. In many ways he won't adapt, he may be known as handicapped. So let's be careful where he's sent, We want his life to be content Please, Lord, find the parents who will do a special job for you They will not realize right away the leading role they're asked to play But with this child sent from above comes stronger faith and richer love And soon they'll know the privilege given in caring for this gift from heaven Their precious charge so meek and mild is heaven's very special child.
Author unknown ========================================================================= Date: Sun, 8 Feb 1998 09:08:43 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jennifer Graham <Jenngram@AOL.COM> Subject: Re: The opening for BJ's page Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Marjorie,
You have a wonderful way with words, and when this ordeal is over..and things are settled you should think of submitting this to a magazine. Its a wonderful and amazing story, about faith and the courage of this amamzing son of yours.I know it would touch the hearts of others as it has touched mine.
I will continue to pray for BJ and the rest of ya'll. When it comes right down to it, I guess, as parents, we do all that we can, then turn it over to God. The hard part, I guess, is making peace with that. And I think you have done that. Take care of yourselves and your little ones. We'll be thinking of you.
Jenn(Tampa/St. Pete) ========================================================================= Date: Sun, 8 Feb 1998 13:04:47 -0600 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: ize <ize@TACOMA.CEATLABS.OKSTATE.EDU> Subject: Mitchell's craniosynostosis MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Hello Resa and Mark Pace,
I would like to know if you received my e-mail about the doctors here in Oklahoma City? I sent it directed to you insted the listserv by mistake. I really prefer to send e-mails by the listserv because everybody can see and just in case it may help somebody out there.
Best wishes, The Ize Family. ========================================================================= Date: Sun, 8 Feb 1998 14:14:47 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Resa and Mark Pace <Copperhd87@AOL.COM> Subject: Re: Mitchell's craniosynostosis Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Yes,we did and thank you for sharing your experience with us. May God bless you and keep you and your family. ========================================================================= Date: Sun, 8 Feb 1998 14:26:58 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Robin Moreno <TheMorenos@AOL.COM> Subject: Re: The opening for BJ's page Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Dear Marjorie,
I guess you'd call me a list "lurker". I read the list to find ways to help a very good friend of mine, whose first child has Aperts. I have followed the letters you have written. Words can't really describe what my heart aches to say to you and every mother (parent) who has experienced the pain of watching their child in pain. I have two beautiful children who bless my days with sunshine and love and wonder. I always thought it would be safer not to have children, then I couldn't really be hurt. But then, I wouldn't ever have really known love. or the face(s) of love. Those little tiny faces that look in wonder at all things, that are so confident and trusting and loving. I can only extend my best wishes and blessings and prayers to you and your family. Your friend in Texas, Robin Moreno ========================================================================= Date: Sun, 8 Feb 1998 17:01:00 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Marianne Camous <Camous@AOL.COM> Subject: Re: The opening for BJ's page Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Once again my email has brought me to tears! Joy for BJ on being decannulated!! What a great day- I can only imagine!! We were told Evan's trach was only for 12 months- later the ENT said that he felt parents couldn't handle any more than that so that's what he tells everyone!! As a health care provider, I was incensed when he admitted that!! So now we wait for after his mid-face advancement. And continue to fight the insurance companies over home nursing for him. Bravo Julie, AJ, and family - I know it's been a tough road. Does it seem like your house just "grew" with all the equipment gone??
And Marjorie- BJ is such a tough little guy and you and David have been inspirational for us all!! BJ's early problems helped me keep some perspective on our own issues with Ev last year, and I am thankful for every day Evan is well and the trach and shunt, etc are doing well. Our thoughts and prayers continue to be with you.
Congrats to Billy for doing well in surgery! Often low grade post-operative fevers are related to atelectasis or slight collapse of tiny air sacs in the lungs. When a patient is given pain meds and lie in bed (or crib) most of the day after a surgival procedure, they don't take deep breaths and fully open all the tiny air sacs. Usuallu deep breathing and coughing as well as a return to more normal activities.
Jenn, You and Joe and Jordan will be in our prayers on Tuesday (isn't that the date??) I truly think the anticipation is the worst part!! Line up your library books and needlework (laptop computer games work well too!!) and it will all be over soon and you'll be amazed how much happier Jordan will be when he's all recovered.
Welcome to the new folks!! this is a great place!
Marianne (in very wet California!! Was I the one who said I'd rather have rain 'cuz you don't have to shovel it??? Did I ask for THIS??? I'm feeling mildewed!) ========================================================================= Date: Sun, 8 Feb 1998 17:17:27 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jennifer Graham <Jenngram@AOL.COM> Subject: Re: The opening for BJ's page Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Marianne,
Yup..Tuesdays the day..Thanks for the prayers and advice. And no you don't have to shovel snow out there, but from what I've been hearing ya'll ahve your hands full w/ mud!! Bet the kids love it as much though!!
Thanks again for keeping us in your thoughts..Right now we're just hoping everything goes as planned. Two intersting points..Jordan sat up by himself today..for a few seconds..and hes learned to stand..and in turn, refuses to sit down. Typical stubborn child of mine!!
Off to finish laundry..cooking..and mental preparation. My saving grace in all of this has been everyone here on the list...You've all been through it, and are here to tell the stories. That gives me faith that we too will soon be seasoned Apert parents, I guess this is sorta like the first rite of passage.
Jenn (Tampa/St. Pete) ========================================================================= Date: Sun, 8 Feb 1998 17:23:52 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Andrea Gartner <LUVS2WRTE@AOL.COM> Subject: Re: The opening for BJ's page Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
I have never heard or met anyone with so much strength as your family and BJ has. BJ is always in my thoughts and prayers. He is a true inspiration and a tough fighter. He is one of the people I greatly admire. Your story brought tears. Im glad God gave him such loving parents. Stay strong..
-Andrea ========================================================================= Date: Sun, 8 Feb 1998 18:23:29 -0600 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: ize <ize@TACOMA.CEATLABS.OKSTATE.EDU> Subject: Best wishes MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Jenn,
We are sending positives thoughts on your way. Stay strong and soon everything is going to be over.
Best wishes, The Ize's ========================================================================= Date: Sun, 8 Feb 1998 20:09:25 -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: JORDAN'S SURGERY MIME-version: 1.0 Content-type: text/plain; charset="us-ascii"
JENN, I will be thinking of you guys during this tough time. I have a strong sense that you will come through this with flying colors, Jordan too!!
I got to meet the Parks family, Friday. Levi is so cute! It is always such a good feeling to meet one more apert family that is strong and love each other unconditionally.
Lori, Shannon, & Levi, I enjoyed meeting you guys, Friday. It was a great visit and I hope you got some answers to some of your questions. I have a tendancy to run on and on.
Marjorie, God Bless your heart, the letter you wrote was moving to say the least. I agree with Jenn, you should send it to a magazine or two and I would almost bet that they would love to publish it. Still keeping you in our prayers. I hope you know that even though you are going through so much now, you have been an inspiration to all of us on how to be strong in times of need! We all need a lesson like that! Give BJ a kiss for me and my family!
Denise Graham ========================================================================= Date: Sun, 8 Feb 1998 20:11:29 -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: Jenn,Lori,Marjorie MIME-version: 1.0 Content-type: text/plain; charset="us-ascii"
Sorry, I sent this under Jordan's surgery, but I had some messages for Lori and Marjorie, too!
JENN, I will be thinking of you guys during this tough time. I have a strong sense that you will come through this with flying colors, Jordan too!!
I got to meet the Parks family, Friday. Levi is so cute! It is always such a good feeling to meet one more apert family that is strong and love each other unconditionally.
Lori, Shannon, & Levi, I enjoyed meeting you guys, Friday. It was a great visit and I hope you got some answers to some of your questions. I have a tendancy to run on and on.
Marjorie, God Bless your heart, the letter you wrote was moving to say the least. I agree with Jenn, you should send it to a magazine or two and I would almost bet that they would love to publish it. Still keeping you in our prayers. I hope you know that even though you are going through so much now, you have been an inspiration to all of us on how to be strong in times of need! We all need a lesson like that! Give BJ a kiss for me and my family!
Denise Graham ========================================================================= Date: Mon, 9 Feb 1998 00:15:11 -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: foster <foster@ICONTECH.COM> Subject: Billy's home Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
Just wanted to tell everyone that Billy is back home again. It's a great feeling and our family feels whole again. He has been crying most of the day since he came home.He seems out of sorts. He only seems to stop when we walk holding him .He is very jumpy and seems like he is afraid. It makes us wonder just how much this surgery has affected him.
Jenn,
Just wanted to let you know that are prayers are with you and Jordan and the rest of your family. We will be thinking of all of you on Tuesday. We know how hard this time before can be but we made and we are sure things will go well. Just keeptelling yourself that this to will pass and in a week from now you will be able to start putting this behind you. God speedto Jordan.
To the Harmons ,
What a beautiful letter and a wonderful and loving family. B.J. is a lucky boy to have a family like your and you are lucky to have a son to be proud of.Hope this week brings many good things for your family and BJ gets better everyday.
The Fosters ========================================================================= Date: Mon, 9 Feb 1998 08:28:10 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jennifer Graham <Jenngram@AOL.COM> Subject: Re: Billy's home Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
I am so glad to hear Billy is home..Boy, did you think, this time last week, you'd soon be at this point??? I have heard these guysare a little out of sorts for the first few days..hopefully this to shall pass..quickly!!! I am so glad things went so well..
Well, I just wanted to thank everyone for keeping us in ya'lls thoughts and prayers. With tomorrow being the big day, I am out od sorts to say the least. Joe and I are doing this alone ( no relatives coming to help..sometimes that just ups our tension levels) so we are hoping it goes better than my delivery, when we had to call for reinforcements in the 11th hr...at least I had so much nervous energy my house is clean this time!! Just incase!!! See the things I worry about when under too mcuh stress!!!
Anyway, I look here at my happy guy and hope hes the same happy guy after all of this. So, we're off to do last minute preparations..pack the teddy and blankets..plus mom and dads busy work...Thanks again for everyones word of support and encouragement. I'll let ya'll know how it goes. Keep your fingers crossed!!!
Jenn (Tampa/St. Pete) ========================================================================= Date: Mon, 9 Feb 1998 07:40:58 -0600 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Bob Horning <Bob.Horning@CORP.HONEYWELL.COM> Subject: Re: sweating
>From: Tony & Sandy Deakins on Sat, Feb 7, 1998 9:52 AM >Subject: Re: sweating
> It has taken us years to figure out how to deal with it, a problem > made worse by the Florida climate and Casey's tendency to be very > outdoors oriented. > Tony Deakins
Tony
How have you dealt with it? Sounds like you may have a few words of wisdom.
Bob Horning ========================================================================= Date: Mon, 9 Feb 1998 08:26:19 -0600 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: ize <ize@TACOMA.CEATLABS.OKSTATE.EDU> Subject: Billy's home MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Good to know that everything went well and Billy is back home again. Best wishes and a speed recovery.
Marjorie,
Hope this week things get better for you all, and BJ feels strong every day. What a lovely letter, and of course it's coming from a loving parents.
The Ize's from Oklahoma. ========================================================================= Date: Mon, 9 Feb 1998 08:41:11 -0600 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: ize <ize@TACOMA.CEATLABS.OKSTATE.EDU> Subject: Just in case MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Hello to all,
I received it from a friend and I wanted to share with you all.
The Ize's.
>>Summary - if you get a call from someone identifying themselves as a >phone >>technican performing a test and asks you to touch nine (9), zero (0), >pound >>sign (#) and hang up - REFUSE TO DO SO! >>By pushing 90# you end up giving the individual that called you access >to >>your telephone line and allows them to place a long distance telephone >>call, with the charge appearing on your telephone bill. We were >further >>informed that this scam has been originating from many of the local >>jails/prisons. Please "pass the word". >>Vernita Duvall >>02/04/98 10:44 AM >>To: All Columbia MD >>cc: >>Subject: phone scam >> >> >>>Heads up... >>> > >>> >FYI >>> >---------- >>> > >>> >On Saturday, 24 January 1998, Naval Air Station, Joint Reserve >Base, >>> >New Orleans' Quarterdeck received a telephone call from an >individual >>> >identifying himself as an AT&T Service Technician that was running a >>> >test on our telephone lines. He stated that to complete the test >the >>> >QMOW should touch nine (9), zero (0), pound sign (#) and hang up. >>> >Luckily, the QMOW was suspicious and refused. Upon contacting the >>> >telephone company we were informed that by pushing 90# you end up >>> >giving the individual that called you access to your telephone line >and >>> >allows them to place a long distance telephone call, with the charge >>> >appearing on your telephone call. We were further informed that >this >>> >scam has been originating from many of the local jails/prisons. >Please >>> >"pass the word". >>
________________________________________________________ | Learn from yesterday; | | Live for today; | | Hope for tomorrow. | |___________________________________________________ ========================================================================= Date: Mon, 9 Feb 1998 11:49:36 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Janine Krebs <Yonstein@AOL.COM> Subject: Re: Billy's home Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Glad to hear that Billy is home. Hope he is doing well.
The Krebs Family (NY) ========================================================================= Date: Mon, 9 Feb 1998 11:52:42 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Janine Krebs <Yonstein@AOL.COM> Subject: Clinics Book Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Hi Everyone:
I am trying to get the name of the bookstore that you said has the Clinics Book by Dr. Upton. I have a relative in the Boston area, and I can't remember the name. I think it was Belle something across from the Hospital.
Thanks in advance.
Janine ========================================================================= Date: Mon, 9 Feb 1998 21:13:13 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "<George Siebert>" <GSieb91515@AOL.COM> Subject: Re: The opening for BJ's page Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
What a wonderful poem. I've added it to the book I'm keeping for Jonathan so he can look back one day and see how special he is.
Thanks for sending it to us.
Brenda ========================================================================= Date: Mon, 9 Feb 1998 21:11:06 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "<George Siebert>" <GSieb91515@AOL.COM> Subject: Re: Billy's home Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
So glad to hear Billy is home again. After Jonathan's surgery he only wants to be walked as well. If I even attempt to sit down, he starts wailing again. Thank goodness it only last for about a day. We're coming up on another surgery the end of this month so I better get my legs rested. ha ha.
Brenda ========================================================================= Date: Mon, 9 Feb 1998 21:23:28 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: AOL User <MHTeach102@AOL.COM> Subject: I finally mailed BJ's Pictures Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Don et all,
I finally stuck an envelope of pictures in the mail today. So let me know when you get them. You may use any of the pictures that you like. My favorite is the one where he is saying yes I did it.
Marjorie Harmon ========================================================================= Date: Mon, 9 Feb 1998 21:25:22 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Gaylann Hicks <Gaylann1@AOL.COM> Subject: Blakes home from Dallas Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Well we've been back for a week but I haven't had time to write since I'm catching up. Blake surgery went as expected. There was two days of pre op. Seeing every doctor in the team, an MRI and sleep study. After surgery Blake had the swelling behind the eyes again but the doctors caught it early enough and sutured his eye closed but left the right eye open a little in order for him to see. They kept him in PICU for 24 hours and was sedated a lot but as soon as he was on the floor they only had tylenol.They used the lactosorb resorbable material and they advanced his forehead as far as the skin would let them. One doctor says he will probably need this done again and another gives us more hope he will not. They did not shave his hair which is great but his head needs to be washed every night for 5 weeks. He's getting a little better about that. He had post nausea so he was in the hospital 5 days. After he was released he went back for another MRI. Everything looks fine. We are finally home and he is still running a low grade fever and is on an antibiotic. He gets better every day but still not back to 100 percent. As for grandmother I still get upset when the doctors tell us we would not believe how fast they get the kids up and around. Blake did little for 5 days then we saw alot of improvement.
I've been trying to catch up on by emails but too difficult to read all. So welcome to all the new members and by prayers are with those who are facing surgery too. After reading some I feel very fortunate that Blake is getting the care he is getting.
Glad to be back, Gaylann, Blake's grandmother ========================================================================= Date: Mon, 9 Feb 1998 21:32:46 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "<George Siebert>" <GSieb91515@AOL.COM> Subject: Re: The opening for BJ's page Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Marjorie,
You are truly an amazing woman with a remarkable family that we should all learn from. We pray that BJ will continue to improve and win this battle. Your beautiful opening for BJ's page made me tingle all over and I can only hope that Jonathan will have the same persistence and loving way that BJ has always had. Hang in there!
The Sieberts Houston ========================================================================= Date: Mon, 9 Feb 1998 21:34:45 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "<George Siebert>" <GSieb91515@AOL.COM> Subject: Re: Good news... Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Way to go AJ. Congratulations! We haven't had to endure the trach but can only imagine what a relief it must be. We are so happy for all of you.
The Sieberts ========================================================================= Date: Mon, 9 Feb 1998 21:36:42 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: AOL User <MHTeach102@AOL.COM> Subject: An Update Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Hi everyone,
I hope this finds everyone doing well. Marjorie usually does this but she asked me too. BJ is about the same as yesterday. His liver function tests came back today but were inconclusive so they are redoing them. BJ had about 2 hours of dialysis today and that has helped his skin color some but not much. I guess the only good thing is that the doctors and nurses have been able to keep him sedated and the pain down to the absolute minimum. The doctors plan to take him to the OR tommorow and replace his G-Tube and do an exploratory on his liver and kidneys. All we can do is hope for the best.
I would like to take the oppurtunity to thank each of you for the kindness you have shown BJ and my family. I cannot tell you how much it means to us, especially Marjorie. She talks about you all so much and we feel we know each of you so well. I hope this is a relationship we can repay in someway eventually.
David A. Harmon Proud father of Benjamin ========================================================================= Date: Mon, 9 Feb 1998 21:39:26 -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: Mark Smith <dsprado@PENN.COM> MIME-Version: 1.0 Content-Type: multipart/alternative; boundary="----=_NextPart_000_0030_01BD35A3.31D00660"
This is a multi-part message in MIME format.
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Dear Gaylann,
Glad to here everything went well with Blake's surgery. Sure is nice to = be back home HUH !!!
Michele
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<!DOCTYPE HTML PUBLIC "-//W3C//DTD W3 HTML//EN"> <HTML> <HEAD>
<META content=3Dtext/html;charset=3Diso-8859-1 = http-equiv=3DContent-Type> <META content=3D'"MSHTML 4.72.2106.6"' name=3DGENERATOR> </HEAD> <BODY bgColor=3D#ffffff> <DIV><FONT color=3D#000000 size=3D2>Dear Gaylann,</FONT></DIV> <DIV><FONT color=3D#000000 size=3D2></FONT> </DIV> <DIV><FONT color=3D#000000 size=3D2>Glad to here everything went well = with Blake's=20 surgery. Sure is nice to be back home HUH !!!</FONT></DIV> <DIV><FONT color=3D#000000 size=3D2></FONT> </DIV> <DIV><FONT color=3D#000000 size=3D2></FONT> </DIV> <DIV><FONT color=3D#000000 size=3D2>Michele</FONT></DIV> <DIV><FONT color=3D#000000 size=3D2></FONT> </DIV></BODY></HTML>
------=_NextPart_000_0030_01BD35A3.31D00660-- ========================================================================= Date: Mon, 9 Feb 1998 23:00:17 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Lynn Thornquist <Thornq@AOL.COM> Subject: Re: The opening for BJ's page Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Margorie,
I sit here with tears in my eyes reading your message about BJ. I have to say that it was the most beautiful thing I have every read. You have a gift. You also have a wonderful gift in BJ and I in Andrew. They are special little kids and some of the things you wrote about really touched home. I have been agonizing over what it will be like when Andrew goes into school, but all I can say is that I will be strong and loving when he gets home. Andrew is only 18 months old and I am already worrying about this. Isn't that silly. I am trying to make Andrew out to be an outgoing little boy as BJ is. That way he will only look away when people stare. I see kids stare now, and I truly believe that it is the parent's fault when children are cruel. Because if these parents brought their kids up to understand that everyone is different in one way or another, the teasing may cease. (I guess that is a dream all of us mothers have). I think about BJ everyday, and hope that you all are doing ok. Your a strong mother Margorie; I have alot of admiration for you. Keep your chin up because everything will work out just fine. God is up there looking down on BJ and yourself and smiling. Keep the faith!
Love to everyone,
The Thornquists Rich, Lynn & Andrew ========================================================================= Date: Mon, 9 Feb 1998 23:27:26 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Lynn Thornquist <Thornq@AOL.COM> Subject: A Little Upset! Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
To everyone out there,
I recently sent away for some life insurance on Andrew. I wanted to start it because they mentioned in the brochures that we could always borrow it for College and such. Also they promised that regardless of any medical problems in the future, Andrew would always be able to continue Life Insurance through them. With Apert Syndrome and everything else, I thought it was a good idea.
I have now received a letter back. Guess what they said, "Due to his medical history of Apert Syndrome, we must postpone consideration of coverage until four years old. After that time, if you request that we reconsider, we will be happy to do so." What are they going to say when he is four, he will still have Apert!!!!
I am so angry, I feel that we are being discriminated against because Andrew has Apert Syndrome. Does anyone have any feelings regarding this? I am so hurt by this, I cannot explain it to you. Has anyone else run into similar problems?
Just to let you know, it was Gerber Life Insurance Company.
Lynn Thornquist ========================================================================= Date: Mon, 9 Feb 1998 23:33:20 +0000 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Comments: Authenticated sender is <jgibson2@POP.erols.com> From: Judy Gibson <jgibson2@EROLS.COM> Subject: Re: A Little Upset! In-Reply-To: <d67e9608.34dfd730@aol.com> MIME-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7BIT
> I am so angry, I feel that we are being discriminated against because Andrew > has Apert Syndrome. Does anyone have any feelings regarding this? I am so > hurt by this, I cannot explain it to you. Has anyone else run into similar > problems? > > Just to let you know, it was Gerber Life Insurance Company.
Lynn, I'm sorry you were hurt by their policies, but they really did you a favor. You'd do far better to put the same amount of money in a mutual fund of some sort -- you can make deposits on an annual basis. I looked into children's life insurance when my older kids were small -- those advertised policies aren't a good buy at all and even the more reasonable ones aren't as good as you might hope.
Yes, he'll still have Apert syndrome when he's older, but he'll also have many of his surgeries behind him -- I'm sure that's what they're thinking.
Judy ========================================================================= Date: Mon, 9 Feb 1998 22:41:07 -0600 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: TIM <timg@BELLSOUTH.NET> Organization: Home Subject: Re: A Little Upset! MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Lynn,
Yes, we have run into the same problem with Nicholas, and then when we reapplied at an older age, they refused him because of so many surgeries and hospitalizations..... we only have been able to get life insurance coverage for him thru my husbands job as a family plan... but, I am still looking for additional coverage... will let you know if I find a company who will accept him.. and if anyone else knows of a company, please let me know... Thanks Carol Graves
Lynn Thornquist wrote:
> To everyone out there, > > I recently sent away for some life insurance on Andrew. I wanted to start it > because they mentioned in the brochures that we could always borrow it for > College and such. Also they promised that regardless of any medical problems > in the future, Andrew would always be able to continue Life Insurance through > them. With Apert Syndrome and everything else, I thought it was a good idea. > > I have now received a letter back. Guess what they said, "Due to his medical > history of Apert Syndrome, we must postpone consideration of coverage until > four years old. After that time, if you request that we reconsider, we will > be happy to do so." What are they going to say when he is four, he will still > have Apert!!!! > > I am so angry, I feel that we are being discriminated against because Andrew > has Apert Syndrome. Does anyone have any feelings regarding this? I am so > hurt by this, I cannot explain it to you. Has anyone else run into similar > problems? > > Just to let you know, it was Gerber Life Insurance Company. > > Lynn Thornquist ========================================================================= Date: Mon, 9 Feb 1998 23:33:10 PST 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: Christy Louden <clouden@CAMALOTT.COM> Subject: Apert Syndrome MIME-Version: 1.0 Content-Type: text/plain; charset="ISO-8859-1"; X-MAPIextension=".TXT" Content-Transfer-Encoding: 8bit
Hello! My name is Christy Louden. I am a Licensed Social Worker form Abilene, TX. I am the Assistant Director of an Early Childhood Intervention Agency called Advancing Babies Chances. I recently completed an Intake, Assessment and Individualized Family Service Plan with a family that has a 3 month old little boy who has been diagnosed with Apert Syndrome. He is the sweetest and most adorable little boy!!! The family lives in a very rural part of West Texas located between Abilene and Cisco, TX. They do not have internet access; however, I will be meeting with the mom very soon to show her some of the sites I have found. Because I am at home tonight, I do not have any specific info about the family that would allow you to contact them. I'll try to get back online before the weekend so that those who are interested may begin to correspond with the family. As I said, the family (Chris, Stacey & Tyler) lives in a rural part of West Texas on a small ranch. The mom (Sta! cey) would love some phone calls and letters to let her know she's not alone. Tyler is receiving medical treatment at the Craniofacial Institute at Medical City Dallas. Dr. Salyer is his doctor. From what I have seen/heard, this doctor is the greatest! I wish all of our kids could have doctors like him! Tyler's fingers are fused like a mitt with no opposing digits. His toes are also fused. He will have surgery to release his premature cranial sutures on 2-12-98. Please pray for them! Please feel free to email me. I will respond to any and all who do. I will also pass along your letters to the family. If you have any advice, words of encouragement, or know of anything else that would benefit the family, please let me know. Thanks so much!!!
Christy Louden clouden@camalott.com ========================================================================= Date: Tue, 10 Feb 1998 08:26:54 -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: Mark Smith <dsprado@PENN.COM> Subject: BJ MIME-Version: 1.0 Content-Type: multipart/alternative; boundary="----=_NextPart_000_0031_01BD35FD.A4B70DE0"
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Good Morning Friends, =20 It is not often that I am on here responding to email, although I = read each and every single note or letter that is sent our way. Whether = it is sent to us or through the Listserv. Each day brings some of us = hope that tomorrow will be a brighter day. I wish that there would have = never been a need for this Listserve, for any of us, but it is a fact = that we need this outlet, to voice our concerns, happiness, joy, = celebrations of accomplishments, discouragement, and many many other = needs and emotions. Sometimes we dont have the option to hold out our hand and let other = people grasp it and help us to hold on tight. This is surely a way for = us to hold on. To our dreams and our desires. To reach out to those in = need. Sometimes we feel so strong that nothing could get in our way, = and one day we need all the strength that we can muster to just get = going to start another day, another hour of waiting, another minute of = uncertainty. For many reasons I hold this electronic heart close to = myself and my family, as a lifeline to our friends and family. Marjorie and David, although we do not know you personally and have = never had the great opportunity to meet with you in person or your = wonderful family it is as if you are no farther away than our back door. = Friends, close, emotional, family, neighbors. Our prayers are with you, each and every day. If we could all take = a moment today just to sit down and clear our minds and our hearts and = just for one minute today think of our dear friends so far away and so = close. Ask our wonderful God to do what is right, to heal the = tenderness and the hurt and the pain in our dear friends little BJ as he = only can. May each one of you and yours see a wonderful new light as = you open your eyes and begin a new day. Take care my friends. We are never far away. Always Mark, Michele, Megan, and Kayla (Lil'Bit)
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<!DOCTYPE HTML PUBLIC "-//W3C//DTD W3 HTML//EN"> <HTML> <HEAD>
<META content=3Dtext/html;charset=3Diso-8859-1 = http-equiv=3DContent-Type><!DOCTYPE HTML PUBLIC "-//W3C//DTD W3 = HTML//EN"> <META content=3D'"MSHTML 4.72.2106.6"' name=3DGENERATOR> </HEAD> <BODY bgColor=3D#ffffff> <DIV><FONT color=3D#000000>Good Morning Friends,</FONT></DIV> <DIV><FONT color=3D#000000></FONT> </DIV> <DIV><FONT color=3D#000000> It is not often that I am = on here=20 responding to email, although I read each and every single note or = letter that=20 is sent our way. Whether it is sent to us or through the = Listserv. =20 Each day brings some of us hope that tomorrow will be a brighter = day. I=20 wish that there would have never been a need for this Listserve, for any = of us,=20 but it is a fact that we need this outlet, to voice our concerns, = happiness,=20 joy, celebrations of accomplishments, discouragement, and many many = other needs=20 and emotions.</FONT></DIV> <DIV><FONT color=3D#000000> Sometimes we dont have the = option to=20 hold out our hand and let other people grasp it and help us to hold on=20 tight. This is surely a way for us to hold on. To our dreams = and our=20 desires. To reach out to those in need. Sometimes we feel so = strong=20 that nothing could get in our way, and one day we need all the strength = that we=20 can muster to just get going to start another day, another hour of = waiting,=20 another minute of uncertainty. For many reasons I hold this = electronic=20 heart close to myself and my family, as a lifeline to our friends and=20 family.</FONT></DIV> <DIV><FONT color=3D#000000> Marjorie and David, = although we do=20 not know you personally and have never had the great opportunity to meet = with=20 you in person or your wonderful family it is as if you are no farther = away than=20 our back door. Friends, close, emotional, family,=20 neighbors.</FONT></DIV> <DIV><FONT color=3D#000000> Our prayers are with you, = each and=20 every day. If we could all take a moment today just to sit = down and=20 clear our minds and our hearts and just for one minute today think of = our dear=20 friends so far away and so close. Ask our wonderful God to do what = is=20 right, to heal the tenderness and the hurt and the pain in our dear = friends=20 little BJ as he only can. May each one of you and yours see a = wonderful=20 new light as you open your eyes and begin a new day.</FONT></DIV> <DIV><FONT color=3D#000000> Take care my = friends. We are=20 never far away.</FONT></DIV> <DIV><FONT color=3D#000000> Always Mark, = Michele,=20 Megan, and Kayla (Lil'Bit)</FONT></DIV></BODY></HTML>
------=_NextPart_000_0031_01BD35FD.A4B70DE0-- ========================================================================= Date: Tue, 10 Feb 1998 10:07:28 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Robin Moreno <TheMorenos@AOL.COM> Subject: Re: Apert Syndrome Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
howdy! we're in Wichita Falls TX (about 2 hours North of Dallas) Let me know if she needs a friend in the area. robin moreno ========================================================================= Date: Tue, 10 Feb 1998 14:14:27 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Sherri Colbert <JPCSLC@AOL.COM> Subject: Re: Apert Syndrome Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
hello Christy,
just wanted to let you know that we will be thinking of Tyler as he goes through this first surgerey! Pass the word on to his mom and dad that they are definately not alone. My name is Jennifer Spears from Clermont,Fl and I, too, have a daughter w/ Apert's!! Please feel free to lean on us here in Florida anytime! Can't wait to hear how everything went. Good Luck and we'll be praying for all of you! 11746 OSWALT RD CLERMONT,FL 34711 c-ya, jennifer,billy,& katey(and my one in the oven) ========================================================================= Date: Tue, 10 Feb 1998 17:50:50 -0800 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Robin MacDonald <macdonal@GOLDEN.NET> Subject: life insurance MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
With a background in life insurance, and the parent of an apert child I can see both sides. Insurance companies may not want to grant a policy to any child, regardless of condition, who has multiple surgeries ahead of them.
Once the surgeries are over, I can see no reason why that individual shouldn't be able to apply for life insurance themselves. It isn't until later in life that the obligations occur, i.e., marriage, debt etc, that require life insurance anyways.
I have to agree with the notion that life insurance shouldn't be used as an investment vehicle, but that isn't to say that buying insurance isn't a wise financial investment.
I have seen life policies issued on a standard basis for individuals who have had a 5 year old clear health history after cancer. Certainly if there is no indication of possible premature mortality, and an otherwise healthy individual, with or without aperts, insurance later in life shouldn't be a big problem.
One idea....if you are concerned about your apert child's future insurability..you could always take out a policy on your life with the proceeds payable to the child. That way, on the death of the parents, there are "insurance funds" available for that child for their insurance needs.
Usually life insurance will always beat some other form of investment in the long run....because rates of return will fluctuate..but a life insurance policy is guaranteed to pay off someday! In Canada, the proceeds of life insurance are tax-free, so it is a pretty inexpensive way to create quite a large tax-free estate for someone! ========================================================================= Date: Wed, 11 Feb 1998 13:48:31 +1300 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: An Update Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
Hi David,
Thanks for the update. Hang in there.
>I would like to take the oppurtunity to thank each of you for the kindness you >have shown BJ and my family. I cannot tell you how much it means to us, >especially Marjorie. She talks about you all so much and we feel we know each >of you so well. I hope this is a relationship we can repay in someway >eventually.
What goes around in this life comes around. The people we help today will help someone else tomorrow and eventually the circle will come back.
You already help me with the stories which demonstrate your love, dedication and commitment to BJ. The children I work with at school would benefit greatly from a mere pinch of what you and Marjorie are sharing with BJ.
Regards, Ann NZ ========================================================================= Date: Tue, 10 Feb 1998 20:43:22 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Lynn Thornquist <Thornq@AOL.COM> Subject: Re: life insurance Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Robin,
Thank you for the information. I will look into taking another life insurance policy on myself. Is it legal to turn someone down because of their condition? I'm not looking to start a fight or anything, but I was just curious. I wasn't getting the policy for investment purposes, I was looking into it because I didn't know if Andrew would have a problem later in life getting life insurance, and this way he wouldn't have to worry and God forbid something happen to my husband or myself when Andrew was older, but not yet adult, he would have something to fall back on.
But your idea about me taking out the policy and Andrew being the beneficiary is great idea.
Thank you very much for the information.
Lynn Thornquist ========================================================================= Date: Tue, 10 Feb 1998 20:00:59 -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: surgeries MIME-version: 1.0 Content-type: text/plain; charset="us-ascii"
Jenn,
I would just like to say that I hope Jordan's surgery went O.K. today. I was thinking about you guys.
Gaylann,
I am glad to hear that Blake did fine. Tell everyone that I hope they are getting caught up on their rest.
I wish everybody that is having surgeries soon, Good Luck!! For everyone that has been and come home, Congratulations!!haha It was only a year ago that Daryl had his surgery, but yet it seems like so long ago, thank goodness.
Denise Graham ========================================================================= Date: Tue, 10 Feb 1998 18:57:55 +0000 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "J. G. Lindamood" <chanan8@JUNO.COM>
Hello Everyone!
I am thinking about Jordan and hope the surgery went well! Every time I wrote the date, I said a prayer!
Lynn, I can remember my father, the financial guru in our family, fighting with the life insurance people about me. I never did understand what was going on, until I was old enough, and as it turns out, he was doing what you are going through now. Eventually, Prudential did offer a plan for me and my father still manages it today. I hope your situation works out for the best!
Christy, I really admire your dedication to the children you are serving! I am Joanne, I'm 33 and I have Aperts. I was born a tad bit before the improvement of technology and have not experienced the number of surgeries Apert children are experiencing today, so, I cannot share that with Chris, Stacy or Tyler. What I can share are the 33 years of my life with Apert's. Please let them know that they are in my prayers and I will be thinking of them on Thursday. Also, let them know that this group of people are the best source of encouragement, support and love! We are here for them!
Marjorie, My prayers will echo the others. Please take care.
Joanne, in Ohio
_____________________________________________________________________ You don't need to buy Internet access to use free Internet e-mail. Get completely free e-mail from Juno at http://www.juno.com Or call Juno at (800) 654-JUNO [654-5866] ========================================================================= Date: Wed, 11 Feb 1998 07:22:42 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jennifer Graham <Jenngram@AOL.COM> Subject: Re: Jordans surgeries Comments: cc: nolph@hotmail.com Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Hello everyone. We SURVIVED!!!!!!
Well, yesterday, as everyone I am sure can relate, was a long and hard day. Yhe surgery went as expected..even though they started 2 hrs late. Jordan was such they guy..not upset b/c he was NPO..and only slightl mifffed b/c they couldn't find a vein for his pre-op lab work. After about 6 sticks they found one..OK...so hes a little chunky!! Of cours when the anesthiologist came and carried him back it was more than heart wrenching. He was in his little yellow ty-kwon-do looking gown...she was carrying him, and he was looking over his shoulder at us..laughing. I don't even have to say what it did to my poor heart.
Now hes in MICU, still on the vent (much to my delight as there wassome discussion of pullin it). They were weaning him last night b/c he was getting restless..even on all the morphine, valium, and versed..wanting to suck on his hand for comfort. I think they will try and pull it today and get him off the drugs. He was real puffy from fluids and blood given during surgery..today the true swelling should be there. He was having some metabolic acidosis..and not responding to the soduim bicarb. ..finally he did and as of 10pm last night labs were fine..and we were told to go get a good nights sleep..YEAH...RIGHT!!!
I promptly came home and guzzled a 6 pack..and everything seemed a lirttle better..the surgery is over..hes doing great, and will look more beautiful than ever. when I took a shower, I just sat down and cried for what seemed like forever. I guess the exhaustion, worry, anticipation, and the fact that we made it. Jordans doctors are wonderful..we saw them many times and this reconstructive doc even came back later that night to just check on Joe and I..I think he was more worried about us going into shock than Jordan.
Thank you to everyone for the calls, and prayers. I truely believe God was with us and all of ya'lls prayers helped see us through this. And David and Marjorie...partof what helped me is knowing how strong ya'll are despite the adversity ya'll face. BJ is an inspiration to children around the world..and I knew if he could get through all he has had to endure, then my little boy was strong enough to get through this.
Christy, good luck w/ your sons surgery..I wish I could prepare you..but nothing can. He will do fine, you have wonderful doctors.
Sorry if I forgeot to congratulte or wish someone well..I just skimmed part of the e-mails..and will catch up later. For now, I am off to the hospital to see my Humptey Dumptey...I refer to our doctors as the kingshorse and kingsman that were able to put our baby back together again. I think they are going to make t-shirts for themselves!!!!!!
Thanks again for everything, you all played such a key role in getting us through this. I truely appreciate it!!
Jenn (in a wonderfully sunny Tampa/St. Pete) ========================================================================= Date: Wed, 11 Feb 1998 07:50:28 -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: Mark Smith <dsprado@PENN.COM> Subject: Re-Jordan MIME-Version: 1.0 Content-Type: multipart/alternative; boundary="----=_NextPart_000_000F_01BD36C1.B8165020"
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Dear Jenn,
Was glad to read that everything went well with Jordan's Surgery. Now = we will be praying for a speedy recovery for your little Humptey Dumptey = and he'll be home before long. .=20
Keep us posted and Take Care.
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<META content=3Dtext/html;charset=3Diso-8859-1 = http-equiv=3DContent-Type> <META content=3D'"MSHTML 4.72.2106.6"' name=3DGENERATOR> </HEAD> <BODY bgColor=3D#ffffff> <DIV><FONT color=3D#000000 size=3D2>Dear Jenn,</FONT></DIV> <DIV><FONT color=3D#000000 size=3D2></FONT> </DIV> <DIV><FONT color=3D#000000 size=3D2>Was glad to read that everything = went well with=20 Jordan's Surgery. Now we will be praying for a speedy = recovery for=20 your little Humptey Dumptey and he'll be home before long.</FONT></DIV> <DIV><FONT color=3D#000000 size=3D2>. </FONT></DIV> <DIV><FONT color=3D#000000 size=3D2></FONT> </DIV> <DIV><FONT color=3D#000000 size=3D2> Keep us posted and Take = Care.</FONT></DIV> <DIV><FONT color=3D#000000 size=3D2></FONT> </DIV> <DIV><FONT color=3D#000000 size=3D2></FONT> </DIV> <DIV><FONT color=3D#000000 size=3D2></FONT> </DIV></BODY></HTML>
------=_NextPart_000_000F_01BD36C1.B8165020-- ========================================================================= Date: Wed, 11 Feb 1998 08:43:37 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Sherri Colbert <JPCSLC@AOL.COM> Subject: Re: Jordans surgeries Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
i'm so relieved to hear that everything is going well. we will still keep the prayers going. get good rest and give jordan a hug from us. jenn spears ========================================================================= Date: Wed, 11 Feb 1998 08:01:51 -0600 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Bob Horning <Bob.Horning@CORP.HONEYWELL.COM> Subject: Re: A Little Upset!
> I am so angry, I feel that we are being discriminated against because Andrew > has Apert Syndrome. Does anyone have any feelings regarding this? I am so > hurt by this, I cannot explain it to you. Has anyone else run into similar > problems?
> Yes, he'll still have Apert syndrome when he's older, but he'll >also have many of his surgeries behind him -- I'm sure that's what >they're thinking.
Judy, Lynn
We've run into the same thing with Krista. I guess we were a little mad at first too, but have gotten over it. No matter what they say, insurance companies are in business to make money, not because they care for you. I'm not trying to make them sound cold and heartless. That's just a fact of life. To a greater or lesser extent the same is true of doctors, banks, your mortgage company, your (pick your favorite business that "wants to give you the best" and insert here),.... For that matter, I'd have to say I go to work to make money too (among other reasons), so I can't be too hard on the insurance company. Maybe I'm cynical but that's how I've dealt with it.
I'm not sure why they think Aperts is a risk. We've tried to get that clarified and have never gotten an answer. Incidently, we tried twice when Krista was younger and my parents tried a couple years ago with a different company. No luck. Just a couple months ago we were updating our own insurance and checked again for Krista and were turned down again. No explanation. She's 10 now and has most of her surgeries behind her, so I don't know if surgery is the reason they turned her down. I doubt that anyone at the office has a clue what Aperts is, but I would guess that it's almost standard procedure to turn down a child with a rare syndrome.
Bob Horning ========================================================================= Date: Tue, 10 Feb 1998 21:18:40 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Elizabeth de Silva <lizsilva@SRV1.TELCONET.NET> Subject: Re: Billy's home MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Jenn, it is wonderful to know that Billy is okay and at home. Congratulations,
Elizabeth ========================================================================= Date: Tue, 10 Feb 1998 21:28:30 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Elizabeth de Silva <lizsilva@SRV1.TELCONET.NET> Subject: Re: Blakes home from Dallas MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Gaylann, I was just wondering how Blake did on his surgery. I am so glad to know that it went as expected. Yes, indeed he is lucky to have a family and a so loving caring grandmother as you are to take care of him.
Elizabeth
Gaylann Hicks wrote:
> Well we've been back for a week but I haven't had time to write since > I'm > catching up. Blake surgery went as expected. There was two days of > pre op. > Seeing every doctor in the team, an MRI and sleep study. After > surgery Blake > had the swelling behind the eyes again but the doctors caught it early > enough > and sutured his eye closed but left the right eye open a little in > order for > him to see. They kept him in PICU for 24 hours and was sedated a lot > but as > soon as he was on the floor they only had tylenol.They used the > lactosorb > resorbable material and they advanced his forehead as far as the skin > would > let them. One doctor says he will probably need this done again and > another > gives us more hope he will not. They did not shave his hair which is > great > but his head needs to be washed every night for 5 weeks. He's getting > a > little better about that. He had post nausea so he was in the > hospital 5 > days. After he was released he went back for another MRI. Everything > looks > fine. We are finally home and he is still running a low grade fever > and is on > an antibiotic. He gets better every day but still not back to 100 > percent. > As for grandmother I still get upset when the doctors tell us we would > not > believe how fast they get the kids up and around. Blake did little > for 5 days > then we saw alot of improvement. > > I've been trying to catch up on by emails but too difficult to read > all. So > welcome to all the new members and by prayers are with those who are > facing > surgery too. After reading some I feel very fortunate that Blake is > getting > the care he is getting. > > Glad to be back, > Gaylann, Blake's grandmother ========================================================================= Date: Wed, 11 Feb 1998 09:22:01 -0800 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Penny Halverson <phalvers@U.WASHINGTON.EDU> Subject: IRC's Chat Tonite! 02/11/98 Comments: To: Crouzon Syndrome Support Group & Other Craniofacial Anomalies <crouzon@u.washington.edu> MIME-Version: 1.0 Content-Type: TEXT/PLAIN; charset=US-ASCII
Hi everyone!!!
Tonite is ApertCrouzon Chat Nite!! So let's get acquainted with each others. :-) Keep in mind that some people will show up alittle later than the time started. IRC Chat is OPEN ALL NITE so stay as long as you like. Please join us!!! :-)
Date To Meet On: Wednesday, February 11, 1998
IRC Server: ChatNet (Any locations)
Port Setting: 6667
Channel: #ApertCrouzon
Time: 11:00pm AT/10:00pm ET/9:00pm CT/8:00pm MT/7:00pm PT/5:00pm HT
If you haven't had a chance to download the mIRC for Windows 3.x and 95 or IRCle for MAC users. Please go to download from one of these below.
To check out the mIRC Help Page for Windows 3.x and Windows 95 users at: http://www.qni.com/~kristib/mirc1.html You can download mIRC 5.31 there.
For MAC Users: Please download IRCle at: http://www.amug.org/~ircle/
If anyone needs help or have questions on accessing the chat on ChatNet. please email to Kristi at either:
mailto:kristib@qni.com
Or for a quicker assistance, you can reach Kristi on AOL IM (AOL Instant Messenger) and she will be available to assist you - see below:
Kristi's screen-name: LilOneB (anytimes)
You can download the AOL IM (AOL Instant Messenger) at: http://www.aol.com/aim
You don't have to be a member to join AOL IM and it is free! AOL IM is an one to one online chat.
Everyone is welcome!!!
Thanks and please join the fun!!!!
Hugs, Penny
http://www.earthlink.net/~hwy2heaven/
mailto:hwy2heaven@earthlink.net mailto:phalvers@u.washington.edu ========================================================================= Date: Thu, 12 Feb 1998 13:34:01 +1300 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: Other possibilities (was life insurance) Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
Hi from Down Under
Considering alternatives to life or medical insurance - In NZ it is expensive to take out medical insurance for children with congenital differences and we haven't tried to take out life insurance for Amy - Howard knows the technicalities of it better than I - but we have recently bought a house for Amy's Medical Fund, which we are renting out. By the time we are likely to need it we will hopefully be able to take a mortgage to raise whatever funds are needed and still have the house - we decided this was better than spending all her medical funds on one operation and having to start over for the next.
The public health system in NZ has the skilled personnel to do the surgeries needed, but the waiting lists are getting longer and longer and we don't want Amy hanging around for years until she can have the surgery she needs. The private hospitals aren't really set up for craniofacial surgery. We have to look at the possibility that we will have to go to Australia or elsewhere at some stage in the future.
And, if we don't have to spend the money on her operations she will have a base to build her finances on.
Ann NZ ========================================================================= Date: Wed, 11 Feb 1998 18:24:47 -0800 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Robin MacDonald <macdonal@GOLDEN.NET> Subject: insurance MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
The answer to your question, is it legal to turn someone down etc, is yes. Insurance is granted through an application and since the insurance company wants some reasonable assurance that they will have enough time to invest your premiums prior to having to make a payout, they have final say.
Many individuals may have insurability problems, for example, people with heart problems, cancer, high blood pressure etc. As I said before however, just because someone is being turned down at an early age is no guarantee that this will always be the case.
Good luck with your policy. Probably best to name your child as beneficiary with the appropriate trustee in place in the event that you die prior to your child reaching the age of majority.
If, after years and years, you or your son/daughter does not need the policy, you can always name another beneficiary of your choice, or just cash it in.
One other innovative use of life insurance for parents of aperts...if there is any charitable organization , hospital or other health care facility, you would like to endow on your death...you can always take a policy on your life with the hospital or whatever the beneficiary. I don't know about US tax law, but in Canada, the premiums you make towards that charity policy are tax deductible. The policy has to be owned by the charity however, so you can't decide to change the beneficiary later in life. ========================================================================= Date: Thu, 12 Feb 1998 13:49:16 +1300 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: A Little Upset! Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
I wonder if they turn down insurance for men and women who work long hours, eat regularly at restaurants, smoke too much, drink too much, etc. Can't help feeling our special ones are a better risk!
>I doubt that anyone at the office has a clue what Aperts is, but I would guess >that it's almost standard procedure to turn down a child with a rare syndrome.
Cheers Ann ========================================================================= Date: Wed, 11 Feb 1998 20:08:43 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Beth Tolson <ETolson643@AOL.COM> Subject: Re: Jordans surgeries Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Jenn Glad to hear that all seems stable. I always felt such a wide range of emotions before, during, and after the surgeries. I always felt that most people never fully understood the gamet of feelings we had as we went through surgery after surgery. Some people thought it got easier....not true. I can fully understand that post surgery let down when the tears just come. Every day will get better and when Jordan comes home, you will be joyful and thankful. Sometimes I think I have an understanding of some things that many parents do not have and I am happy and content to appreciate the little points of happiness I have been able to see and feel because of all we have been through. I am sure that you feel about Jordan as we do about Tim; he has brought such great joy and understanding to our lives. He is so courageous and considerate. Who could ask for more? Remember...one day at a time.
Beth Tolson Boston ========================================================================= Date: Wed, 11 Feb 1998 22:28:56 +0000 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Comments: Authenticated sender is <jgibson2@POP.erols.com> From: Judy Gibson <jgibson2@EROLS.COM> Subject: Re: A Little Upset! In-Reply-To: <199802120049.NAA01204@chong.ihug.co.nz> MIME-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7BIT
Ann, > I wonder if they turn down insurance for men and women who work long hours, eat regularly > at restaurants, smoke too much, drink too much, etc. Can't help feeling our special ones > are a better risk!
The last time I got a life insurance policy, I was tested for nicotine (smoking) and HIV. If either had been positive, I'm not sure I'd have gotten the policy -- certainly not at standard rates. I also have to pay higher rates for it because I'm diabetic. Once the major surgeries are over, the kids are probably a better bet than lots of adults though.
I've opted not to get life insurance for my children (no known medical problems) -- my life insurance agent advised us that the money would be better spent on more insurance for us. I'm sure that you're concerned that your child may not be able to get life insurance later on, but most employers offer it as a benefit -- no medical exam necessary. That's not usually enough, but my husband has the option to get extra insurance through his employer at group rates as well -- again, no medical exam needed. It is term life insurance -- no savings plan included. That's a lot cheaper than whole life or other types of plans, so we've invested the difference in retirement accounts. It adds up very quickly that way.
Judy ========================================================================= Date: Thu, 12 Feb 1998 08:11:30 -0500 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Mark Smith <dsprado@PENN.COM> Subject: RE-Insurance MIME-Version: 1.0 Content-Type: multipart/alternative; boundary="----=_NextPart_000_000A_01BD378D.D3487720"
This is a multi-part message in MIME format.
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Hello,
This is just my two cents, sense all week I've been reading about Life = Insurance.
When I was just a little tot my father had a policy for me and my two = brothers. He always believed in spending his money very carefully, and = so he took out a small amount 12,500 on me and my two brothers. Being = so young it was very inexpensive. At the age of 17 when I went into the = military I was paying a about 8- 10 dollars a month. Nothing that would = break me. When I was on leave one time, the insurance man saw me and = noticed I was pregnant and asked my If I would be interested in having a = rider placed on my policy for my unborn child (Kayla) at first I was = kind a of skeptical but then he said he spoke with my dad. I know my = dad wouldn't approve if he thought it wasn't worth it. So on that note I = decided to do it. I wasn't aware that my unborn child would have = aperts. To add a child to my already policy would be 1.97 or so more a = month. I couldn't go wrong. After I had Kayla I was so glad I did it. = Her being on my policy will entitle her to have life insurance for the = rest of her life. When she turns 21 she should be able take her own = policy without any medical questions. We will see wont we !!!
Just a note having life insurance at an early age, my brother at the age = of 27 was a good worker at a local company that just offered workman = comp. My father kept his life insurance policy for him, for Marty my = brother couldn't see no use, what a waste of money he would say. My = father and mother were very upset to say the least when they got that = phone call from Marty employer to go to his job site, he was in = construction. To there surprise when my parents showed up and me later = my brother was buried alive in a ditch they had been digging 16 feel = deep. To say the least I can and sorry to say this my brother didn't = make it. That was almost two years ago. The company my father had = worked for 20 some years and my brother was following his foot steps. = The company only gave my parents 3,000 dollars to bury him, that was not = nearly enough. We look back and say thank god my dad had that policy.
I am starting to go on and on. My point being I never think its to = young to have a policy or have something in place whether it would be a = saving, a house ect, for you never can be prepared for the unexpected.
Michele
------=_NextPart_000_000A_01BD378D.D3487720 Content-Type: text/html; charset="iso-8859-1" Content-Transfer-Encoding: quoted-printable
<!DOCTYPE HTML PUBLIC "-//W3C//DTD W3 HTML//EN"> <HTML> <HEAD>
<META content=3Dtext/html;charset=3Diso-8859-1 = http-equiv=3DContent-Type> <META content=3D'"MSHTML 4.72.2106.6"' name=3DGENERATOR> </HEAD> <BODY bgColor=3D#ffffff> <DIV><FONT color=3D#000000 size=3D2>Hello,</FONT></DIV> <DIV><FONT color=3D#000000 size=3D2></FONT> </DIV> <DIV><FONT color=3D#000000 size=3D2>This is just my two cents, = sense all week=20 I've been reading about Life Insurance.</FONT></DIV> <DIV><FONT color=3D#000000 size=3D2></FONT> </DIV> <DIV><FONT color=3D#000000 size=3D2>When I was just a little tot my = father had a=20 policy for me and my two brothers. He always believed in spending = his=20 money very carefully, and so he took out a small amount 12,500 on = me and=20 my two brothers. Being so young it was very = inexpensive. At=20 the age of 17 when I went into the military I was paying a about 8- 10 = dollars a=20 month. Nothing that would break me. When I was on = leave one=20 time, the insurance man saw me and noticed I was pregnant and = asked my If=20 I would be interested in having a rider placed on my policy for my = unborn child=20 (Kayla) at first I was kind a of skeptical but then he said he = spoke with=20 my dad. I know my dad wouldn't approve if he thought it wasn't worth it. = So on=20 that note I decided to do it. I wasn't aware that my unborn child = would=20 have aperts. To add a child to my already policy would be = 1.97 or so=20 more a month. I couldn't go wrong. After I had Kayla I was = so glad I=20 did it. Her being on my policy will entitle her to have life = insurance for=20 the rest of her life. When she turns 21 she should be able take = her own=20 policy without any medical questions. We will see wont we = !!!</FONT></DIV> <DIV><FONT color=3D#000000 size=3D2></FONT> </DIV> <DIV><FONT color=3D#000000 size=3D2>Just a note having life insurance at = an early=20 age, my brother at the age of 27 was a good worker at a local company = that just=20 offered workman comp. My father kept his life insurance policy for = him,=20 for Marty my brother couldn't see no use, what a waste of money he would =
say. My father and mother were very upset to say the least when = they got=20 that phone call from Marty employer to go to his job site, he was in=20 construction. To there surprise when my parents showed up and me = later my=20 brother was buried alive in a ditch they had been digging 16 feel = deep. To=20 say the least I can and sorry to say this my brother didn't make = it. That=20 was almost two years ago. The company my father had worked for 20 = some=20 years and my brother was following his foot steps. The company = only gave=20 my parents 3,000 dollars to bury him, that was not nearly enough. = We look=20 back and say thank god my dad had that policy.</FONT></DIV> <DIV><FONT color=3D#000000 size=3D2></FONT> </DIV> <DIV><FONT color=3D#000000 size=3D2>I am starting to go on and = on. My=20 point being I never think its to young to have a policy or have = something in=20 place whether it would be a saving, a house ect, for you never can = be=20 prepared for the unexpected.</FONT></DIV> <DIV><FONT color=3D#000000 size=3D2></FONT> </DIV> <DIV><FONT color=3D#000000 size=3D2></FONT> </DIV> <DIV><FONT color=3D#000000 size=3D2>Michele</FONT></DIV> <DIV><FONT color=3D#000000 size=3D2></FONT> </DIV></BODY></HTML>
------=_NextPart_000_000A_01BD378D.D3487720-- ========================================================================= Date: Thu, 12 Feb 1998 09:42:31 -0600 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: ize <ize@TACOMA.CEATLABS.OKSTATE.EDU> Subject: Dr.Francel and Dr.Panchal MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Hi Resa and Mark Pace,
As I told you before, Dr Francel didn't do the craniofacial advancement on our son. He just put the shunt and did a great job. I think that you are right to be concerned and looking for more informations on your team. When Dr Francel first met our son, he wanted to do a craniofacial advancement, but we told him that Felipe had it done when he was 4 months old and Dr Gumerlock, (the one that did the advancement) said
that Felipe should have another one when he becomes a teenager, just for cosmetic reason. We asked Dr Francel if there was a need to do another one. He said that his procedure is a little bit more complex and shows a big difference. He asked us to think about doing another advancement and so on... We went to talk with Dr. Levine the plastic surgeon that worked with Dr. Gumerlock to ask his opinion and he said that we should not to be concerned about another advancement right now, unless Felipe was having any problem, which was not the case.
When we came back to see Dr. Francel, Felipe had a detaled CT done and everything looked fine and there was no need to do another advancement.
Dr. Francel agreed with us that there was no need to do so, but he said that it would be a big change on the appearance. We just thanked him for the advice but we are going to do the next step on School age or when he is a teenager. It is going to depend on his look or needs. For us, Felipe is the most handsame little boy and we are proud of him. Felipe's case is mild.
I am sorry but I dont know any other Dr. Francel's pacient.
We dont know about Dr. Panchal, how he works but we would consider him because Dr. Levine refered us to him and we trust Dr. Levine. He uses to say that Felipe is part of his family and like us, he wants what is the best for our son. Now, if you need a plastic surgeon, we would highly recomend Dr. Levine. He is a wonderful and a competent professional, besides he is specialist on hands surgeries. He made a miracle with Felipe's hands. Felipe had a bad hand fusion when he was born and now he got 4 fingers and a thumb on both hands and works just fine. If you want, we can give you a telephone number of Dr. Levine's pacient with Apert here in Norman OK.
I apologize asking you this question, since I deleted your first e-mail and I don't recall this, but was your child born with Apert Syndrome?
Sorry again for being long and taking your time.
Good luck on your search. You sure are doing what is the best for your child.
The Ize Family. ========================================================================= Date: Thu, 12 Feb 1998 11:49:45 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Janine Krebs <Yonstein@AOL.COM> Subject: Re: Jordans surgeries Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Dear Jenn and Joe:
Glad to hear Jordan came through the surgery well. The next couple of days will get better and easier and before you know it he will be home with you guys.
The emotional part is a big release that you needed so you could pull yourself back together to be there for Jordan.
Hope the recovery continues to go well.
Janine ========================================================================= Date: Thu, 12 Feb 1998 12:36:09 -0800 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Robin MacDonald <macdonal@GOLDEN.NET> Subject: Re: A Little Upset! MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit
Howard & Ann wrote: > > I wonder if they turn down insurance for men and women who work long hours, eat regularly at restaurants, smoke too much, drink too much, etc. Can't help feeling our special ones are a better risk! > > >I doubt that anyone at the office has a clue what Aperts is, but I would guess >that it's almost standard procedure to turn down a child with a rare syndrome. > > Cheers > Ann Yes they do turn down all kinds of people who have either high risk occupations or hobbies and high risk lifestyles..i.e, high blood pressure etc. Keep in mind insurance of any type, home, auto, life etc. is a commondity which is based on risk.
Risk is a measurable and unfortunately deadly accurate indicator of future events, given enough people to base your stats on. The insurers are not psychic and cannot accurately predict which person will beat the mortality tables..but they know x percentage with a certain risk category will. If that risk category is too high, sorry no policy.
FOrtunately , there are lots of insurance companies who may have varying opinions..and failing buying insurance...invest the money and then the only risk is on your shoulders re: rate of return.
It may be helpful to speak directly with the director of underwriting at the insurance company and send some info to them about aperts. The risk in part, may not be directly related to aperts...but to the numerous surgeries surrounding aperts.
good luck... ========================================================================= Date: Thu, 12 Feb 1998 16:46:24 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Resa and Mark Pace <Copperhd87@AOL.COM> Subject: Thank you from Mitchell Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Mitchell says thank you to you all. Your help and kindness has been so much appreciated. We are trying to make the best decision we can and the more information we have, the better qualified we will be to make that decision.
I'm sorry it's taken so long to write again. I sent one E-mail to the list server that was returned and so I'm just getting back to it.
We made an appointment with Dr. Marsh in St. Louis for Monday, March 16th. I think we are fortunate to get in so soon. Our older children will be on Spring Break, so we'll just make it a long weekend. It will probably be the closest we get to a vacation this year--all the rest of our time off will be spent on surgery and vacation. I guess you all know about that.
Thank you so much to the Ize family for all their very helpful information. Although I think Dr. Francel is probably a very good surgeon, I think he might be a little too aggressive. Hopefully, the appointments with Dr. Salyer and Dr. Marsh will help clarify what Mitchell's problems and needs really are.
I wish there was someone who could advise you about surgery that didn't make his/her living by doing surgery. To me, they always have a conflict of interest. You would like to think that they have your child's best interest at heart, and yet, how many businessmen send a several thousand dollar client out the door without offering him service?
We are so happy that Jordan's surgery went well. Soon he will be home and this surgery will just be a memory.
I hope Tyler's surgery went well today.
Good luck and prayers to BJ in his continued recovery.
Thank you to all for your prayers and support.
Resa and Mark Pace Edmond, Oklahoma ========================================================================= Date: Thu, 12 Feb 1998 17:04:33 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Resa and Mark Pace <Copperhd87@AOL.COM> Subject: Mitchell's surgery Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
To the Ize's:
Mitchell has only craniosynostosis. He does not have Apert's. Other than his head shape and a scar from ear to ear, Mitchell is a typical child. He has been in physical therapy for some limited physical delays. He is a little over 13 months old and is not walking, but he does say a few words. My heart goes out to those of you that have even more to deal with than we do. Mitchell's problems are indeed small in comparison to yours.
Dr. Horton at Integris Baptist here in OKC operated on him last April. At the January visit, he referred us to Dr. Francel for what he believed to be cosmetic reasons.
Dr. Francel thinks that Mitchell's skull is not expanding on the sides enough to accomodate his brain growth and wants to do what he calls a complete reconstruction of Mitchell's skull using the absorbable plates and Dr. Panchel's help. His opinion is that Dr. Horton was not agressive enough, and he only bought us time. Dr. Horton's surgery (Francel says) was a simple "pie" procedure that depended on growth to shape the head. Dr. Francel says that after surgery Mitchell's head will look completely different. We have scheduled surgery for April 2nd, with the opinion that we can always cancel it.
I think Dr. Francel wants to establish a name for himself in the medical community and is working very hard at accomplishing that. He talks alot about his experience and accomplishments. Although I want the best and latest technology used for Mitchell, I don't want some hot dog performing a radical procedure just so he can later brag about it in some medical journal.
Hopefully, our next appointments with Dr. Salyer in Dallas and Dr. Marsh in St. Louis will help clarify what might be going on and what we should do. We would sincerely appreciate any additional info or just plain honest opinions from anyone here. Already I feel like we have made substantial progress based on the help from the families on this server. Thank you to you all.
Resa and Mark Pace ========================================================================= Date: Thu, 12 Feb 1998 14:13:25 -0800 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Robyn Johnston <robyn@ORDATA.COM> Subject: Re: Mitchell's surgery Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
Resa and MArk,
>We would sincerely appreciate any additional info or just plain honest >opinions from anyone here.
You are already doing the right thing. By going out and getting more opinions from several Surgeons you are enabling yourselfs to to make the best choice for your situation and regarding Mitchell's fututre, that you will be comfortable with. We wish you the best of luck.
Robyn Johnston, Eugene OR ========================================================================= Date: Thu, 12 Feb 1998 14:21:07 -0800 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Robyn Johnston <robyn@ORDATA.COM> Subject: Jordan Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
Dear Jenn and Joe,
It has been over 48 hours since Jordan had his surgery. Those were probably the toughest for me personally. Pretty darned exhausting! I hope things are finally looking better for your precious little boy. His swelling should be starting to go down and soon you will be home and things will be back to normal. Before you know it, he will be himself again.
Take care of yourselfes and get some rest. We are thinking of you!
Robyn Johnston, Eugene, OR ========================================================================= Date: Thu, 12 Feb 1998 21:35:55 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "<George Siebert>" <GSieb91515@AOL.COM> Subject: Re: Jordans surgeries Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Jenn,
So glad to hear your little one is doing well (and mom and dad too.) I know it's a relief to get this one out of the way. Every surgery is scary but I tend to dread the cranial stuff more than the others. Hope all continues to go well. Keep us posted.
Brenda houston ========================================================================= Date: Thu, 12 Feb 1998 21:45:53 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "<George Siebert>" <GSieb91515@AOL.COM> Subject: Re: Apert Syndrome Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Christy,
We live in Houston so you aren't too far from us. Jonathan has been in Keep Pace (the early chilhood intervention program in our area) since he was 1 month old. I can't say enought good about all they have done for us. When we first got involved I couldn't imagine what therapy could possibly be done for a 1 month old. But I know in my heart it has made all the difference in the world with Jonathan's development. He has ot once a week and a cognitive skills teacher comes every other week. He is such a hard worker and stays with each task for a long time. He doesn't get bored easily and is such a joy to watch. We have tentatively schedule a surgery with Dr. Sayler on March 24th to completely remodel Jonathan's skull. This is our third opinion and we feel comfortable now with this decision. It will only get harder if we wait. Dallas is close to home and we have heard very good things about Dr. S for his surgical abilities. However, I have heard the bed side manor is not the greatest. Let me know if there is any info you can share regarding this doctor as I have not met him in person yet. We have done everything through the mail and phone with our CT scans and photos. My private e-mail is GSieb91515@aol.com.
Thanks.
Brenda Siebert Houston ========================================================================= Date: Thu, 12 Feb 1998 21:56:21 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "<George Siebert>" <GSieb91515@AOL.COM> Subject: Re: Blakes home from Dallas Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Gaylann,
I have been waiting for you to get back to see how Blake made out. I'm so glad to hear everything went well. When you get caught up I'd like to talk to you or Sonya about the folks in Dallas and why you went with Dr. Fearon vs. Dr. Salyer. Are they on the same team? We are preparing for a surgery with Dr. Salyer at this time but I'm still gathering info. We are getting the blood donor stuff worked out. Did you all have to do that ahead and where did you go? We heard the insurance doesn't pay to transport the blood so we will probably have a friend go with George to Dallas and do it there. Do you know what costs are associated with the blood donation? George donated for Jonathan's 1st surgery but after they were in the OR and had already removed the scalp our surgeon came out and said the blood components didn't match so we had to use the blood bank or close up and reschedule the surgery again later. We opted for the blood bank but I would much rather use our donor blood. I'm not sure what they meant by the components don't match. I'm trying to reach our surgeon to tell us what exactly that was all about. Jonathan will have a total skull remodeling so he will lose more blood than the first cranioplasty.
Anyway I'm starting to ramble. Just wanted to say welcome home and email me when you can at GSieb91515@aol.com. Give Blake a big hug from his friends in Houston.
Brenda ========================================================================= Date: Thu, 12 Feb 1998 22:05:28 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "<George Siebert>" <GSieb91515@AOL.COM> Subject: Re: Mitchell's craniosynostosis Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Welcome to the Pace family,
We are the Sieberts (George, Brenda Melissa and Jonathan) in Houston. Jonathan is 14 months old and has Apert syndrom. We are also going to Dallas to see Dr. Salyer after having our previous cranioplasty done in Houston. Please share anything you can in regard to what you have heard about Dr. S. I feel like I need to know as much as possible to make the right decision of whether to do another cranial surgery at this time. This will be our third opinion. I know what you are going through trying to make these tough decisions that will effect the rest of our children's lives. Our email is GSieb91515@aol.com if you have anything to share.
Again welcome to the listserver, Brenda Houston ========================================================================= Date: Thu, 12 Feb 1998 21:19:58 -0600 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Chad & Denise Graham <cgraham@INFOAVE.NET> Subject: TV & INSURANCE MIME-version: 1.0 Content-type: text/plain; charset="us-ascii"
I have been fighting with our state insurance for a while now. We have private insurance, but Tenncare helps pay for Daryl's therapy. In the past two years of Daryl's life I have learned to fight for his and our rights. It seems that I am always fighting for something. Well, after weeks of debating and waiting my voice was finally heard. One of Nashville's news stations has a so called robinhood of the public. His name is Turko(last name) and he takes on subjects that he feels that someone has been done wrong. Well, he found out about my battle, and called me for an interview. We did this today. It went great! It should appear on the news on Mon. or Tues. I am really excited that my voice is going to be heard, and people will know how badly this state's ins. treats disabled children. I think I have really found my nitch, I love advocating work. It feels good when you finally make a difference. This will not only help Daryl, but many other disabled children in the state. Please pray for my family and for good results of this battle. Thanks for listening! Hope everyone is recovering well and doing fine!
Denise Graham ========================================================================= Date: Thu, 12 Feb 1998 22:54:20 -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: Kerri Hedinger <khedinger@NS.GEMLINK.COM> Subject: Re: TV & INSURANCE MIME-Version: 1.0 Content-Type: text/plain; charset="iso-8859-1" Content-Transfer-Encoding: 7bit
Denise,
Congratulations! I knew that you could do it. Yes, you do have the nitch. Advocacy is something I'm learning. Good luck with your venture and we are wishing you all the best. Our prayers are with you, Chad, Nakita and Daryl. We will be coming your way for Devin's surgery that has been rescheduled for March 5th. Hopefully he will stay well until then. He will be getting tubes that day also. I contacted the Lexington Unit for Devin's hand surgery and they seem to think we will be able to start them sometime in April. (finger's crossed)
Kerri, Tyler, Erin and Devin -----Original Message----- From: Chad & Denise Graham <cgraham@INFOAVE.NET> To: APERT@LISTSERV.AOL.COM <APERT@LISTSERV.AOL.COM> Date: Thursday, February 12, 1998 6:23 PM Subject: TV & INSURANCE
> I have been fighting with our state insurance for a while now. We >have private insurance, but Tenncare helps pay for Daryl's therapy. In the >past two years of Daryl's life I have learned to fight for his and our >rights. It seems that I am always fighting for something. > Well, after weeks of debating and waiting my voice was finally >heard. One of Nashville's news stations has a so called robinhood of the >public. His name is Turko(last name) and he takes on subjects that he >feels that someone has been done wrong. Well, he found out about my >battle, and called me for an interview. We did this today. It went great! >It should appear on the news on Mon. or Tues. I am really excited that my >voice is going to be heard, and people will know how badly this state's >ins. treats disabled children. I think I have really found my nitch, I >love advocating work. It feels good when you finally make a difference. >This will not only help Daryl, but many other disabled children in the >state. Please pray for my family and for good results of this battle. >Thanks for listening! > Hope everyone is recovering well and doing fine! > > > Denise Graham > ========================================================================= Date: Thu, 12 Feb 1998 22:15:13 +0000 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "J. G. Lindamood" <chanan8@JUNO.COM>
Hello Rene, Mike, and everyone else!
It's 9:50 p.m. and I have had a very long day (worked 10 plus hours!)! You will not believe the surge of energy I received when I read your messages! WOW!
Rene I have the deepest of admiration for you and your family! What is your daughter's name? Not to sound pompous, I believe I was put on this earth to help people and I want to help as many people as I can. So, please ask away!
I have been a member of this list since October 1997, and wrote "my story" then. Did you get to read it? Just in case you didn't, here's a brief "story". I'm 33, living on my own, oh excuse me, I have two great birds, Clarence and Coal who reside with me. They are my "sunshine in every day"! I have lived apart from my family for about seven years now and treasure every minute! I am not financially independent, "because" is a long story, but part of it is beacuse I have not had the greatest luck with jobs. I am currently looking for another position as my current job will be complete soon (another long story). At any rate, I love helping people and am looking for a job in a non-profit in the Public Relations area. I love to write! I can go on and on with this, so why don't you ask me questions and I will try to answer them to the best of my ability. I am not a professional, just experienced.
Mike, I would love to communicate with Jeannie! Can I send you my snail mail address via your personal e-mail address? I am communicating with a young lady out in California, around my age. She does not have a computer. I can ask if I can share her address with another person. I do not have access to the internet either. I have a e-mail only service, it's free and can be downloaded from the net and installed on your computer. In case you're interested, it's called JUNO, and sorry, I don't know the site. I think I just typed JUNO into the find area and got it.
Looking forward to talking to you both soon! Joanne, in Ohio
_____________________________________________________________________ You don't need to buy Internet access to use free Internet e-mail. Get completely free e-mail from Juno at http://www.juno.com Or call Juno at (800) 654-JUNO [654-5866] ========================================================================= Date: Thu, 12 Feb 1998 23:34:37 -0800 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Robyn Johnston <robyn@ORDATA.COM> Subject: Re: TV & INSURANCE Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
>It feels good when you finally make a difference. >This will not only help Daryl, but many other disabled children in the >state.
Denise, way to go! You are so right! I have not run into any "Major" barriers yet, just minor ones, but I too have learned to speak up for the sake of our daughter's best interest. We have had to prove our case to our insurance company to receive the adequate attention that we feel is necessary for Brenna's medical care. But it is worth it!!! Unfortunately I learned a little too late for her first major surgery, but watch out from now on! I now have local intervention people using me for a resource as to how I made it happen. It was a long process but as you say, but, if I can help even one more child receive the proper care they deserve, I believe it is worth it. Anyways, congratulations on getting the word out! I wish you success in getting the results you want for Daryl and all of the others to follow.
By the way, I am curious if you have heard anything yet from Dr. Cunningham regarding Daryl's chromosome testing. Please let us know when yu get the results! We will probably have Brenna tested during her next major surgery.
Hope all is well, Hugs, Robyn Johnston, Eugene, OR
At 09:19 PM 2/12/98 -0600, you wrote: > I have been fighting with our state insurance for a while now. We >have private insurance, but Tenncare helps pay for Daryl's therapy. In the >past two years of Daryl's life I have learned to fight for his and our >rights. It seems that I am always fighting for something. > Well, after weeks of debating and waiting my voice was finally >heard. One of Nashville's news stations has a so called robinhood of the >public. His name is Turko(last name) and he takes on subjects that he >feels that someone has been done wrong. Well, he found out about my >battle, and called me for an interview. We did this today. It went great! >It should appear on the news on Mon. or Tues. I am really excited that my >voice is going to be heard, and people will know how badly this state's >ins. treats disabled children. I think I have really found my nitch, I >love advocating work. It feels good when you finally make a difference. >This will not only help Daryl, but many other disabled children in the >state. Please pray for my family and for good results of this battle. >Thanks for listening! > Hope everyone is recovering well and doing fine! > > > Denise Graham > ========================================================================= Date: Fri, 13 Feb 1998 07:53:25 -0800 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Scott Pengelly <scottp@EUGENE.COM> Subject: Congratulations, Denise Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"
Good morning:
Good going, Denise. Congratulations on risking and succeeding.
All the best, Scott ========================================================================= Date: Fri, 13 Feb 1998 09:27:55 -0800 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Penny Halverson <phalvers@U.WASHINGTON.EDU> Subject: IRC's Chat Tonite! 02/13/98 Comments: To: Crouzon Syndrome Support Group & Other Craniofacial Anomalies <crouzon@u.washington.edu> MIME-Version: 1.0 Content-Type: TEXT/PLAIN; charset=US-ASCII
Hi everyone!!!
Tonite is ApertCrouzon Chat Nite!! So let's get acquainted with each others. :-) Keep in mind that some people will show up alittle later than the time started. Please join us!!! :-)
Date To Meet On: Friday, February 13, 1998
IRC Server: ChatNet (Any locations)
Port Setting: 6667
Channel: #ApertCrouzon
Time: 11:00pm AT/10:00pm ET/9:00pm CT/8:00pm MT/7:00pm PT/5:00pm HT
If you haven't had a chance to download the mIRC for Windows 3.x and 95 or IRCle for MAC users. Please go to download from one of these below.
To check out the mIRC Help Page for Windows 3.x and Windows 95 users at: http://www.qni.com/~kristib/mirc1.html You can download mIRC 5.31 there.
For MAC Users: Please download IRCle at: http://www.amug.org/~ircle/
If anyone needs help or have questions on accessing the chat on ChatNet. please email to Kristi at either:
mailto:kristib@qni.com
Or for a quicker assistance, you can reach Kristi on AOL IM (AOL Instant Messenger) and she will be available to assist you - see below:
Kristi's screen-name: LilOneB (anytimes)
You can download the AOL IM (AOL Instant Messenger) at: http://www.aol.com/aim
You don't have to be a member to join AOL IM and it is free! AOL IM is an one to one online chat.
Hugs, Penny
http://home.earthlink.net/~hwy2heaven/
mailto:hwy2heaven@earthlink.net mailto:phalvers@u.washington.edu ========================================================================= Date: Fri, 13 Feb 1998 19:13:51 -0600 Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Chad & Denise Graham <cgraham@INFOAVE.NET> Subject: CHROMOSOMES&DEVIN'S SURGERY MIME-version: 1.0 Content-type: text/plain; charset="us-ascii"
KERRI, I hope Devin is feeling better. I will plan on being down at Chattanooga to be with you during Devin's surgery. I will pray that he will stay well until then!
Robyn, No, I have not heard anything yet. He said it may be a while. I am being patient for now. We sent Daryl's bone and tissue samples 3 weeks ago, so they haven't had much time to do any research. I am anxious to see what they can discover.
God Bless everyone who has, is, and was having surgery this week. God Bless the Harmon family!!
Denise Graham ========================================================================= Date: Fri, 13 Feb 1998 20:32:49 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: AOL User <MHTeach102@AOL.COM> Subject: An Update Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Just a short note to let everyone know whats up,
BJ is still in CCU at the hospital, he is about the same as last report with no real improvements. He has regressed and is in a coma once again. But the doctors and us are waiting this out. His Liver function tests came back with several irregukarities and they have begun BJ on Dialysis to help clear his blood of toxins. His pain seems to be under control with the spinal block they did on Tuesday night. David and I are meeting with several specialists tommorow and have arranged a meeting with the local hospice team if it comes to that.
So now we sit and wait. And I am not good at waiting. I have only been home a few hours this week and I am starting to worry about how this is effecting Joshua, Jacob and Katie. I can only pray that someday they understand that we have to do this and be here all the way. I will go lack of sleep is turning this into rambling nonsense.
Marjorie Harmon
Don, have you gotten BJ's pictures yet? ========================================================================= Date: Fri, 13 Feb 1998 22:06:59 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Sherri Colbert <JPCSLC@AOL.COM> Subject: Re: TV & INSURANCE Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
denise graham
My name is Sherri Colbert and have a granddaughter with Aperts. We lived in TN until she was born. My heart brought us back to Florida. Even thought I could do nothing, I needed to do nothing closer to my daughter and her family and mostly to hold on to that precious baby. That precious one is now 2 1/2, has four (4) surgeries behind her and is a total joy!! The reason for my response to your letter is this, I have a very dear friend in the town where we lived who is very much an advocate personality. She's a pint size dynamo!!! Also, she is a teacher and has been for approx 23 yrs. I will be intouch with her in the coming days and ask her if I could pass her info on to you either privately of via Email. Please be patient with me as I have been out of town most of this week at a Trade Fair for the Garden Department for Home Depot. Spring has sprung here in Florida and every year it gets off to a bang with in infussion of new product knowledge and "stuff". I'll be intouch as soon as I can.
Sincerely, Sherri (Granny) Colbert - Clermont, FL (25 mi. west of Orlando) ========================================================================= Date: Fri, 13 Feb 1998 23:05:45 -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: Jim and Kelly Younkin <JimandKelly@YOUNKIN.COM> Subject: Prayers MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit
Marjorie and David, Jim and I just wanted to let you know that we've been thinking of BJ and praying so hard for you, BJ, and the rest of your family. As I read your opening for BJ's page I cried so hard. I told Jim that through this listserve I really feel as if I know BJ and all the other kids. Your BJ, our Sara, and all the other precious kids are so tough and strong yet so beautiful and sometimes fragile. My prayer is that they all, always can feel like butterflies. I can't even begin to imagine the ordeal you're going through--just know that we're thinking of you. With love, Kelly Younkin ========================================================================= Date: Sat, 14 Feb 1998 13:35:07 EST Reply-To: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange and Internet safe haven for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Gaylann Hicks <Gaylann1@AOL.COM> Subject: Response to Brenda Mime-Version: 1.0 Content-type: text/plain; charset=US-ASCII Content-transfer-encoding: 7bit
Brenda,
I'm glad to hear that you have decided to take Jonathan to Dr. Salyer in Dallas. We were pleased with the hospital and care Blake received. Dr. Salyer is a part of the same team as Dr. Fearon. When we visited in September, Dr. Salyer was out of the country and we met with Dr. Eric Hubli. We liked Dr. Hubli also. The reason we chose Dr. Fearon? It just kind of happened.