Guest guest Posted May 12, 1999 Report Share Posted May 12, 1999 Joanne, Welcome to the CHARGE list. Janet Wife to Matt Mom to & (CHaRGEr) 7, nne 2, and Mom to 1 on 5/18, and 20 months. Weymouth, Massachusetts Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 1999 Report Share Posted May 12, 1999 Joanne, Welcome to the list! I'm so glad you found us. I'm glad to hear is doing so well. I hope you find it as helpful as we do! You parents who have gone through this alone without the list or support of other CHARGE families amaze me! I've had these guys since the get-go pretty much and they've been my sanity. We are also the only CHARGE family in and around our city. There's only one other in our province that we are aware of, I just met her via the telephone the other night. She's about an hour away. Anyway, I won't ramble too long, it's great to have another fellow CANADIAN on the list!!! Mom to Kennedy 15 mos old CHARGEr, 9, 8, and wife to Graeme New Brunswick, Canada Visit the " Weir's homepage " at: http://www.geocities.com/SunsetStrip/Palms/5716 ICQ #1426476 > > >Hello to everyone!!! > >I guess I should introduce myself as I have been reading the list for a >couple of weeks now. I wished I was on the list 2 years ago. > >Our daughter will be 2 1/2 years old next month and when she was >diagnosed with CHARGE no health professional not even our paediatrician >knew what it was. I had to provide him with a print our from the internet. > We live in a small town in Ontario, Canada called Sturgeon Falls. > is the only child here with CHARGE. She has colobomas in both >eyes, (refuses to wear her glasses), hearing loss (wears one hearing aid >because they can't get the other to fit properly), and she had Choanal >Atresia (repaired with 9 surgeries in 10 months). The first surgery was a >big one but the 8 were only laser. She also had tubes put in her ears >during the 6th surgery. She also has right facial palsy. >She is 23 lbs and 30 " tall. She is small but our son was only 28 lbs at >that age. She has done so well. When we were told she had CHARGE, we >thought she would not be able to function. She is almost walking, signs >over 60 words and speaks about 27 words. She uses the vision and hearing >she has to the max. We have a wonderful consultation through W. Ross >Mc School, Deafblind services in Brantford, Ontario. (Hi Cathe) >The first year was very hard, we almost lost her twice. Our Children's >Hospital is 4 1/2 hours away so we were airlifted twice from our little >hospital because of respiratory arrest. >She is not tube fed because we refused the surgery. We knew she could eat >because when I would feed her she would eat. In hospital the nurses did >not take the time. She came home at 6 weeks old with a tube inserted >through her mouth, couldn't do it through her nose because of the Choanal >Atresa. That was gone three weeks after discharge. >Now I can't get her off Chocolate Chip Cookies!!! >The major problem we have now is that she is very spoiled. She used to be >an excellent sleeper but now refuses to go in her crib. She will sleep >anywhere else but you can't move her to her crib because she get >hysterical. Anyone else going through this, is it CHARGE behavior or >typical 2 year old? My son loves to sleep so I can't compare. Sorry to >ramble on. > >Jo-Ann & Ernest Laframboise >parents of , 2 1/2 years with ChArgE > Yves , 8 years with an attitude > >e-mail at work: lafraj@... (feel free to e-mail privately). My >e-mail is at work because we had to purchase hearing aids instead of a >computer in 1997. > >------------------------------------------------------------------------ >ONElist: where real people with real interests get connected. >http://www.onelist.com >Join a new list today! >------------------------------------------------------------------------ >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 12, 1999 Report Share Posted May 12, 1999 Hello to everybody. Please let me introduce myself first. My name is Petra and I am living in south of Germany. 6 weeks ago the daugther of my sister was born and the doctors diagnosed CHARGE. It is hardly possible in Germany to find information about CHARGE. Fortunately I discovered via Internet the address of CHARGE Onelist. What we are looking for is - any information available about what causes CHARGE - Could you recommend any literature - Does anybody know if a " CHARGE GROUP " is existing somewhere is Europe - Which medical centers or universities in US can be contacted to response to detail question? Please be informed that the e-mail address I am using is my working e-mail address. I do not have a private one available so far. That is why I have to ask to only send e-mails as short as possible in order to avoid any difficulties. Sorry for this. Thanks in advance for any help you can give. Kind regards Petra Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 1999 Report Share Posted May 12, 1999 Hello Petra and wilkommen in " CHARGEland " ! Ich wohne in San Francisco und von 1975 bis '81 in Dortmund. Unser tochter is 14 und hat CHARGE. In Europa ist SENSE in England und auch in Nederlands ist Dr.Jan van Dijk- er ist mit CHARGE eigentlich ein " expert " . Alles Gute und Wilkommen! Jackie Kenley in San Francisco Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2004 Report Share Posted February 3, 2004 Hello everyone, my name is Audrey, I live in KY, and have just been diagnosed with fibromyalgia. The doctor I seen didn't tell me very much about it, or if there would ever be a cure. All he said was to take motrin and a sleeping pill that he prescribed. These don't help, I seem to live in pain everyday, so I decided to see if there were any other people out there with the same disease, and see what you all do to help relieve the pain. That's when I found this group, and I " m glad that I did. If any of you out there have some advice for me, I sure could use some. I look forward to hearing from you. Audrey Quote Link to comment Share on other sites More sharing options...
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