Guest guest Posted November 29, 2002 Report Share Posted November 29, 2002 , I am so sorry to hear about your recent troubles. Why is she bleeding from the G tube it is in the peritoneum? Oh my gosh what a situation. My son at one time had a J tube and a G tube. Why do they think she couldn't go through the surgery? It almost sounds like they NEED to find out what is going on. Best Wishes, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2002 Report Share Posted November 29, 2002 , I'm sorry to hear of 's stomach troubles. Yikes, 22 years old and this stuff is still going on, that is scary. I hope it all works out and she doesn't lose her oral eating. I'm dreaming of that day myself for Kennedy.... ~ Weir Mom to Kennedy, 4yr old CHARGEr, 13, 11, and wife to Graeme New Brunswick, Canada Visit the Weir Website: http://personal.nbnet.nb.ca/gweir ICQ# 1426476 (unknown) Hello! I just wanted to let everyone know that 's dialation, hernia surgery, fundalplication and g-tube change has been put off, until further notice. Her stomach is bleeding and they don't think that she will have a chance if the surgery goes on. (Some thing has to be done!) The plan is to put a G/J tube in, which will totally bypass the stomach and go into the small intestine. They are afraid to even take the BARD out, so will leave that in, as well. Although she has had a fundalplication before it has been taken over by the hernia. It had become more and more difficult for her to swallow oral food(pureed, applesauce, baby food and pudding) and she beging heaving and choking. She has only been oral for about 4 years and is so proud of herself. As we have increased her bolus feedings, she has started asking for them. Her tube leaks extensively, so it's about 1/4 cup every hour! I have now become a member of the CHARGE Syndrome Foundation and am looking forward to reading the manual. and I also plan to be in Cleveland! ~, friend to (CHARGE) 22 years. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2002 Report Share Posted November 30, 2002 Dear and : Many hugs and blessings are sent your way... Jan H. Mom to CHARGE'r 2 yr. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2003 Report Share Posted March 6, 2003 Hi , I'd be glad to go to the chat on Wednesday night. What time would you like to schedule it? We can also keep it on Saturday for those that wish to use it that night. (unknown) Hi I was wondering if there is a possibilty to change the time of the chat session from Saturday to Wednesday because I would really like to be invovled in it.Unfortunantly I work on Saturday nights so Im never able to participate. Does anyone agree or disagree Thanks, PAUl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2003 Report Share Posted March 6, 2003 what time? http://community.webtv.net/maryechick12/ http://community.webtv.net/maryechick12/pets http://community.webtv.net/maryechick12/birthdayboy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2003 Report Share Posted March 24, 2003 Welcome to the group. Kim in Tucson Mom to Dylan 6 CHARGE, Kayla 12, Tyler 15 > Just wanted to say hi we are new to the group. My husband Victor and > I have a five year-old son with CHARGE. He is the light of our lives. > He is so funny sometimes with his logic he makes us laugh. We live in > Salt Lake City Utah, antbody is welcome to contact us anytime. Again > hi look forward to being part of the group. > a and victor > > > > Membership of this email support groups does not constitute membership in the > CHARGE Syndrome Foundation. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter) > please contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > 6th International CHARGE Syndrome Conference, Cleveland, Ohio, > July 25-27, 2003. Information will be available at our website > www.chargesyndrome.org or by calling 1-. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2003 Report Share Posted March 24, 2003 a & Victor, Welcome to the CHARGE list! I also have a 5 year old with CHARGE, my daughter Kennedy. I look forward to hearing more about your son! ~ Weir Mom to Kennedy, 5yr old CHARGEr, 13, 11, and wife to Graeme Saint , New Brunswick, Canada Visit the Weir Family Website - http://personal.nbnet.nb.ca/gweir CHARGE Syndrome Canada - http://www.chargesyndrome.ca (unknown) Just wanted to say hi we are new to the group. My husband Victor and I have a five year-old son with CHARGE. He is the light of our lives. He is so funny sometimes with his logic he makes us laugh. We live in Salt Lake City Utah, antbody is welcome to contact us anytime. Again hi look forward to being part of the group. a and victor Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2003 Report Share Posted March 27, 2003 Thanks ! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2003 Report Share Posted March 27, 2003 , fortunately or unfortunately--however you want to look at it I don't know about abusive behaviors, but let me say this, is a lucky girl to have you looking out for her!! (unknown) > Hi! > > I, too, am about to go off so I apologize in advance. This monday I > took to the doctor to discuss the self abusive behaviors, > stimulation and compulsiveness. He said that " she has always picked > at herself " , (duh! Shouldn't something have been done about it?) > and " How do we know that is OCD, maybe it's just ? " (Oh > please!) " As is with CHARGE these behaviors are common. " (Yes, but > others are doing something about it!) " If we put 20 kids together, 10 > being CHARGEd, what do you think is going to be the difference if we > drug them " (He lost me there!) " We are kind of stuck because she > isn't a kid, yet not an adult. " I understand this, but I do believe > that some of these behaviors need to diminish and the modification > that I have tried doesn't work. He said that he will talk to the > developmental pediatrician and get back to us, of course, I am still > waiting. Yes, still sees a pediatrician and ped. gastro doc, > but they won't take her at the childrens hospital for any procedures > other then gastro. Mind you, she is 22, 58lbs. and 3.9ft. > What medications have you tried for your children? I have tried > the bubble wrap, gak, play doh and other things. She is very tactile > defensive and wants nothing to do with it. , when I showed her > what to do with the bubble wrap she went and gave it back to me, I > tried it again and she threw it away. He had mentioned Paxil and > Zoloft, being he doesn't want to sedate her. > I have been with since 3rd grade and taken care of her > since 9th. We are more like sisters that get along extremely well. > She has moved into an Adult Family Home and I now work there. The > transition was easy and she has not been affected by it, these > behaviors have been going on for years. I don't know how long he has > been her DR. as this was the 1st time that I had met him. I > mentioned that I had belonged to this list and the foundation and > refrained from telling him as to how much I knew about CHARGE > compared to him. > Any insight is welcomed, we look forward to meeting many of you in > Cleveland. > > ~, friend to , 22 CHARGE > > > > Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter) > please contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > 6th International CHARGE Syndrome Conference, Cleveland, Ohio, > July 25-27, 2003. Information will be available at our website > www.chargesyndrome.org or by calling 1-. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2003 Report Share Posted May 12, 2003 I would ask an ENT about the ear concerns , is she being followed by one currently? ~ Weir Mom to Kennedy, 5yr old CHARGEr, 13, 12, and wife to Graeme Saint , New Brunswick, Canada Visit the Weir Family Website - http://personal.nbnet.nb.ca/gweir CHARGE Syndrome Canada - http://www.chargesyndrome.ca (unknown) Hi! Any ideas on flying for the 1st time with your CHARGEr? My concern is the pressure and 's ears. She has a hole in 1 drum and we are constantly fighting infection. (Don't ask as to why something further hasn't been done about it, I have no clue!) She cannot chew gum, would suckers work? Our flight to Cleveland is about 5 hours, it's a straight shot, but we are going through the time zones. I tell every day her that we are going on an airplane to vacation and she does understand that, but then she can be just excited because it is just the two of us. , friend to , CHARGE 22 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2003 Report Share Posted May 12, 2003 Yes and they want the hole to close before anything is done about it. He has her on drops, but I don't think that they are working. We have already tried other antibiotics. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2003 Report Share Posted May 12, 2003 ----- Original Message ----- From: " " >> She > cannot chew gum, would suckers work? Yes as does sucking on a straw. Also smelling a little eucalyptus on a handkerchief or tissue can help as well. The ear with the hole in the drum wont cause you hassles, its the other ear that may........ " Kind words do not cost much. They never blister the tongue or lips. They make other people good-natured. They also produce their own image on men's souls, and a beautiful image it is. " - Blaise Pascal (1623-1662) - Keep Looking For Rainbows!! , Mum to (8 years, T-18 Mosaic) Quote Link to comment Share on other sites More sharing options...
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