Guest guest Posted April 9, 1999 Report Share Posted April 9, 1999 Colleen, We will leave for Days Inn in Philly on Sunday morning, Aprill18. Our appt at Shriners is April 19 at 8:30 am. Maybe we could go out to dinner. Foley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 1999 Report Share Posted April 15, 1999 Debra, Just send me your new addy when you get it.. I'll take care of it.. Casey charge@... minnow@... Mom to Dawn 20, Ken 9 ADHD, and 7 CHARGE. Cobb California ICQ UIN# 728514 AIM Buddy List: ZeeCasey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 1999 Report Share Posted April 25, 1999 Jillian, Hi! It was great to see you, too. Hopefully we'll spend more time together next time. Way to go on signing Mommy! You just made your mom's day!! Keep up the good work!! We'll see you in Houston!! Much Love, Feather, 18 mos ___________________________________________________________________ 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/getjuno.html or call Juno at (800) 654-JUNO [654-5866] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 1999 Report Share Posted April 30, 1999 Sally; Please let me know where is that doctor. Here the expectatives are very depressive. Regards, Thanks. (no subject) > > > >- > >I don't know where my head was when I wrote the post below. My own son has >a coloboma involving his optic nerve which results in light perceptiononly >in his left eye. His other eye has the upper field loss, which seems to be >common in kids with charge who have vision..... DAH! Because that eye was >small and had a iris coloboma, we went to a specialist who made a scheleral >shell to cover the small eye. (He wanted it). It is beautiful and looks >natural like his right eye. His eye muscles allow it to move naturally. I >can't tell you how many physicians have looked in both eyes and said, they >look good. I have gotten tired of telling them one is a prosthesis! I >just giggle inside! The prosthesis is like a very large contact lense that >is a white material(plastic?) that is then painted to match his good eye. >The technicians even paint the tiny blood vessels making it appear very > " normal " . I always have to double check! > > >>Dear Sally: >>My daugther(6yr) was diagnosed with Charge and her major defect is a large >>coloboma in the optic nerve. Although, she is doing very well in her special >>school. >>God bless you and your family . >> > > >>> >>> >>>About colobomas- >>>I believe most kids with CHARGE have colobomas that interfere with their >>>upper visual field. This was confirmed at least for us when had a >>>visual field test as Janet described. I am impressed was able to >>>sit still and concentrate so well at only 7 years...congratulations!!! If >>>your kids can have the exam, it will help clarify where they can and cannot >>>see. Also, it took me a while to figure out what those blind spots really >>>look like/or don't look like. Instead of a " black " spot as we would see >>>inside a simuilator, it really is a lack of anything. We all have a >>>natural blind spot where all the nerve endings come together at the back >>>and slighltly to one side of the eye to form one big bundle called the >>>optic nerve. At this place, there is a slight round depression called the >>>optic disc. This one part of the back of the eye is " blind " and provides >>>no vision. Most people never notice these blind spots because each eye >>>covers for the other eye's blind spot. >>>TO EXPERIENCE YOUR NATURAL BLIND SPOT, try this. Take a piece of paper, >>>draw two 1/2 inch " X's " about 2 1/2 inches apart. Hold the paper at arm's >>>length, and close your left eye. Stare hard, with your right eye at the >>>dot. Move the page *slowly* towards you still staring at the X. What >>>happens to the X? Try it again, but with your right eye closed. Stare >>>with your left eye at the X - then start moving the page slowly towards >>>your face. What happens to the X? It is really weird, but it helps to >>>know that a blind spot is not a black hole, but " nothing " . >>> > > > >------------------------------------------------------------------------ >Tired of empty chat rooms and out of date bulletin boards? >http://www.ONElist.com >ONElist: Making the Internet Intimate >------------------------------------------------------------------------ >4th International CHARGE Syndrome Conference, Houston, Texas, July >23-25, 1999. >For information about the CHARGE Syndrome Foundation or to become a member please contact marion@.... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 1999 Report Share Posted May 1, 1999 Hi, Please send me your address so I can send you the conference information. The general info is available at oour web site www.chargesyndrome.org marion PMD1080@... wrote: > > From: PMD1080@... > > Hi, > My name is Paje, I am interested in the conferrence that is going to be in > Houston in July. I am a para-educator trying to help a child with CHARGE. Any > info, is helpful. > I have one thing to ask, Is trying to potty train a hard thing and is there > a special way to do this? We are using the potty training method used with > children that have autism. > > ------------------------------------------------------------------------ > Come check out our brand new web site! > http://www.onelist.com > Onelist: Making the Internet intimate > ------------------------------------------------------------------------ > For information about the CHARGE Syndrome Foundation or to become a member please contact marion@.... -- n A Norbury CHARGE Syndrome Foundation, Inc. Columbia, Missouri, USA mailto:mnorbury@... mailto:marion@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 1999 Report Share Posted May 1, 1999 Sorry, folks. I was answering a bunch of messages and this one slipped by me. n n Norbury wrote: > Hi, > > Please send me your address so I can send you the conference > -- n A Norbury CHARGE Syndrome Foundation, Inc. Columbia, Missouri, USA mailto:mnorbury@... mailto:marion@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2001 Report Share Posted October 29, 2001 That is good and I would like to go. Lori (no subject) I had to send this one, I laughed and laughed A Woman's Point of View Take all American women who are within five years of menopause - train us for a few weeks, outfit us with automatic weapons, grenades, gas masks, moisturizer with SPF15, Prozac, hormones, chocolate, and canned tuna - drop us (parachuted, preferably) across the landscape of Afghanistan, and let us do what comes naturally. Think about it. Our anger quotient alone, even when doing standard stuff like grocery shopping and paying bills, is formidable enough to make even armed men in turbans tremble. We've had our children, we would gladly suffer or die to protect them and their future. We'd like to get away from our husbands, if they haven't left already. And for those of us who are single, the prospect of finding a good man with whom to share life is about as likely as being struck by lightning. We have nothing to lose. We've survived the water diet, the protein diet, the carbohydrate diet, and the grapefruit diet in gyms and saunas across America and never lost a pound. We can easily survive months in the hostile terrain of Afghanistan with no food at all! We've spent years tracking down our husbands or lovers in bars, hardware stores, or sporting events...finding bin Laden in some cave will be no problem. Uniting all the warring tribes of Afghanistan in a new government? Oh, please ... we've planned the seating arrangements for in-laws and extended families at Thanksgiving dinners for years ... we understand tribal warfare. Between us, we've divorced enough husbands to know every trick there is for how they hide, launder, or cover up bank accounts and money sources. We know how to find that money and we know how to seize it ... with or without the government's help!> Let us go and fight. The Taliban hates women. Imagine their terror as we crawl like ants with hot-flashes over their godforsaken terrain. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2001 Report Share Posted November 4, 2001 Hi , I tried emailing you privately with my address and had no luck...so could you please email me privately at ahebel@... so I can give it to you. I would really like to be a part of the holiday card exchange. Amy Hebel (no subject) Hi all: Since I am compiling our address list I thought I would toss out an idea that can be done completely online. I thought maybe we could all post our favorite Christmas cookie recipe, or maybe just favorite holiday recipe in general, and we could just print out the ones we like. What do you think? I still hope to do the Christmas cards too, but for the ones of you who dont have time or energy to participate in that, this would be easier? Fearless leader, what is the verdict? Either way, I still want your recipe for the 2 day mint cookies!!! , 40, Columbus, OH Bipolar, Borderline Personality Disorder, and???? Mom to: , 15, probably Bipolar Annie, 12, so far so good! JD, 8, Autism, severe ADHD, maybe bipolar, AND my reason for getting out of bed each day!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2008 Report Share Posted May 15, 2008 I think we have all seen this one at one time or the other. but worth reading again. Jena Subject: FW: Puppies for sale Puppies for sale - -Will you send this back? A farmer had some puppies he needed to sell. He painted a sign advertising the 4 pups. And set about nailing it to a post on the edge of his yard. As he was driving the last nail into the post, he felt a tug on his overalls. He looked down into the eyes of a little boy. " Mister, " he said, " I want to buy " one of your puppies. " " Well, " said the farmer, as he rubbed the sweat of the back of his neck, " These puppies come from fine parents and cost a good deal of money. " The boy dropped his head for moment. Then reaching deep into his pocket, he pulled out a handful of change and held it up to the farmer. " I've got thirty-nine cents. Is that enough to take a look? " " Sure, " said the farmer. And with that he let out a whistle. " Here, Dolly! " he called. Out from the doghouse and down the ramp ran Dolly followed by four little balls of fur. The little boy pressed his face against the chain link fence. His eyes danced with delight. As the dogs made their way to the fence, the little boy noticed something else stirring inside the doghouse. Slowly another little ball appeared, this one noticeably smaller. Down the ramp it slid. Then in a somewhat awkward manner, the little pup began hobbling toward the others, doing its best to catch up.... " I want that one, " the little boy said, pointing to the runt. The farmer knelt down at the boy's side and said, " Son, you don't want that puppy. He will never be able to run and play with you like these other dogs would. " With that the little boy stepped back from the fence, reached down, and began rolling up one leg of his trousers. In doing so he revealed a steel brace running down both sides of his leg attaching itself to a specially made shoe. Looking back up at the farmer, he said, " You see sir, I don't run too well myself, and he will need someone who understands. " With tears in his eyes, the farmer reached down and picked up the little pup. Holding it carefully he handed it to the little boy. " How much? " asked the little boy. " No charge, " answered the farmer, " There's no charge for love. " The world is full of people who need someone who understands. It's National Friendship Week. Show your friends how much you care. send this to everyone you consider a FRIEND. If it comes back to you, then you'll know you have a circle of friends. WHEN YOU RECEIVE THIS LETTER, YOU'RE REQUESTED TO SEND IT TO AT LEAST 4 PEOPLE, INCLUDING THE PERSON WHO SENT IT TO YOU. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2008 Report Share Posted June 22, 2008 vicoden cant even touch my pain. I am on Fentaynl patches and oxy ir 5 for breakthrough. good luck mike Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2008 Report Share Posted June 22, 2008 Becky, Welcome! Let us know what your diagnosis is, if anything, and we can tell you if we have something similar. On another note, we are getting together a rough draft of a book for people who suffer from chronic pain. Each person is writing a chapter with their story. If you are interested, please email me separately. Please share more information so we can sympathize better! I hope you have a pain free day! Chelle Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 14, 2008 Report Share Posted July 14, 2008 Heidi, I'm so sorry you're in pain, and so sorry your mom doesn't understand. I think we've all been there. If you have a chance, write and tell us what you're dealing with. Chelle Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 14, 2008 Report Share Posted July 14, 2008 Thank you Chelle for the reply. I feel like I am a part of something. I have chronic pain due to 4 back surgeries w/cages that failed and so then they put pedical scews and rods on top. The other 2 back were to put antibiotic beads on top of the area and the 3 days later he cut me open again to remove them. I have had 3 neck, the last 101/2 hrs front and back procedure. And this nuerosurgeon took the pieces from my pelvic. It still hurts. They tell me I have Fibro Myalgia, which I know little about. And then I have restless leg disorder which can be maddening. I have had I believe now 23 operations and the back is the area I wish I had never let them cut on me. I walk hunched over, even tho I try not to. I do see my internist on July 30 to see what next for my back cuz this posture is not at all good for me. I am sorry so long. I sure feel for those that do not get anything for relief. I just can't understand why when the AMA said like 15yrs ago that people in chronic pain deserve to have something to allow us to function ie. narcotics etc....so I don't get it. well thanks again. Until next time peace heidi Subject: Re:(no subject) To: Hugs-N-Pain Date: Monday, July 14, 2008, 6:39 AM Heidi, I'm so sorry you're in pain, and so sorry your mom doesn't understand. I think we've all been there. If you have a chance, write and tell us what you're dealing with. Chelle Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2010 Report Share Posted August 20, 2010 I think we all make excuses for our own behavior and others, Helen: LOL It is called thinking errors and we all do this to justify our behavior. It is a human trait that when recognized we can all work on. You can google this. Juat me and welcome back! Quote Link to comment Share on other sites More sharing options...
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