Guest guest Posted March 21, 2000 Report Share Posted March 21, 2000 >>> rachelle.cote@... 03/21/00 11:03AM >>> From: rachelle.cote@... Hello, my name is le. I'm from Sudbury, Ontario, Canada, 5 hours north of Toronto. My son Caleb is 21 months old and has CHARGE. He has a VSD, ASD, PDA, all of which require no surgery or medication as of yet. He weighs in at 20 lbs. down one pound from January which we had worked so hard to get him to gain only to see him lose it. His diet consists of butter, cream, gravy and all the good stuff the doctor usually tells us grown-ups to avoid, and still no weight gain. He has micropenis (poor guy). Hi le! Welcome to the list! : ) We had been told that when kids with heart defects go into congestive heart failure, they will reach a point where they cannot gain weight no matter how many calories you give them. Have you checked with his cardiologist lately? Our son is on Pediasure, a high calorie, fortified product that is available in cans. Has Caleb seen an endocrinologist? Testosterone injections (3 or 4, one month apart) are recommended for boys with CHARGE who have a small penis. It works best when they are infants or toddlers and helps them to not be ashamed to urinate in front of their peers. As many will tell you, it works GREAT! : ) Welcome! Cheryl, , (6), (4, CHaRGE) MI Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2000 Report Share Posted March 22, 2000 Hi le, Welcome! I can't believe all the new Canadian families I see on the list now. I remember when was little we were the only family (she's 8 1/2 now, 9 in May). When we went to the first CHARGE conference there were only two other families there, one from Yellowknife and the other from Fort Erie, but they have not been on this new CHARGE list. Being such a distance from everyone in the U.S., this list is wonderful. I unfortunately am not on it a lot. Between studies, (Yes I went back to finish a degree) work, and being a CHARGE mom, I only get a chance to check my email in spurts. However, you will find a wealth of information and support on this list from all the wonderful and caring CHARGE families. It's great! Again welcome to Caleb and your family! Pat, , (12 1/2) (CHARGE, 8 1/2) Keswick, Ontario, Canada I'm a new member From: rachelle.cote@... Hello, my name is le. I'm from Sudbury, Ontario, Canada, 5 hours north of Toronto. My son Caleb is 21 months old and has CHARGE. He has bilateral choanal atresia for which he's had holes drilled and stents inserted at 2 days old, and removed at 6 months old. He will have another operation soon. He has sclerocornea of the right eye as well as coloboma. Left eye is normal. He has brain abnormalities:enlarged ventricles, no olfactory nerves found and pituitary gland at wrong angle (still not sure what it all means). He has a VSD, ASD, PDA, all of which require no surgery or medication as of yet. He weighs in at 20 lbs. down one pound from January which we had worked so hard to get him to gain only to see him lose it. His diet consists of butter, cream, gravy and all the good stuff the doctor usually tells us grown-ups to avoid, and still no weight gain. He has micropenis (poor guy). He has had multiple hearing infections since roughly 1 year old and only now are they being dealt with. He will be getting tubes in possibly next month. He requires speech therapy, occupational therapy, and extensive physiotherapy as his muscle tone is high and several muscles in his legs have atrophied. His previous pediatrician sucked, and now the current one follows my lead. Let's face it, when it comes to our kids, we're the specialists. Hope to talk to someone soon. le, mom to 3yrs, Caleb 21 months (charger) and wife to Sly. ------------------------------------------------------------------------ DON'T HATE YOUR RATE! Get a NextCard Visa, in 30 seconds! Get rates as low as 0.0% Intro or 9.9% Fixed APR and no hidden fees. Apply NOW! http://click./1/2120/1/_/22564/_/953654665/ ------------------------------------------------------------------------ For information about the CHARGE Syndrome Foundation or to become a member please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2011 Report Share Posted July 30, 2011 In the context that I read her post, it was my impression that she was directing her question to the NT spouses/partners. That's why I didn't reply to her question myself. I could have read her post incorrectly though. Best, ~CJ wrote: > I had a difficult time handling it at first. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2011 Report Share Posted July 30, 2011 Hi Judy..... I had a difficult time handling it at first. I have heard many times, where people felt a good sense of relief in knowing " well this is what makes me or this person 'different' " . But not so with me. I was someone who has accomplished much in different parts of my life (academically, leadership, etc.). But when I was diagnosed with AS and then AD/HD combined just a few weeks apart from each other, I felt as if someone threw me against a wall and then down to the ground. I lived through days, when I wondered why I had completed graduate school or accomplished this or that. Fortunately, the light at the end of the tunnel became bigger and bigger, to where I adjusted to living (then liking and loving myself) with AS and AD/HD combined. Wasn't easy, and I wouldn't have traded any of what I went through in all this. I would encourage you to read the book, " Aspergers: A Love Story " . Talks about how the guy has AS/HFA and she doesn't, and they have been seeing each other for like three years. Hope this helps... > > Hi, I've recently discovered I am in a 25 years relationship, though > technically not married, with a man who has the characteristics of > Asperger's. I realized this when I read _Connecting with your Asperger > Partner_ by Louise Weston and felt I was reading the story of the past > 25 years of my life. It answered years of questions and I wish I'd had > the book 25 years ago so I'd know what he needed from me. I have > figured a lot out over the years, and have many new questions that > aren't even formulated yet. I am 72 years old and Tom is 67. > > I continue reading about Asperger's and relationships. Other than my > adult children who have always been aware there is something " different " > about Tom, no one I know understands Aspergers or what living with Tom > is like. I'm not sure what this discovery will even mean. > > I wonder how other people handle Aspergers. I've never been in any > type of online group and so am exploring new territory. Judy Lennon > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2011 Report Share Posted July 30, 2011 Hi Judy..... I had a difficult time handling it at first. I have heard many times, where people felt a good sense of relief in knowing " well this is what makes me or this person 'different' " . But not so with me. I was someone who has accomplished much in different parts of my life (academically, leadership, etc.). But when I was diagnosed with AS and then AD/HD combined just a few weeks apart from each other, I felt as if someone threw me against a wall and then down to the ground. I lived through days, when I wondered why I had completed graduate school or accomplished this or that. Fortunately, the light at the end of the tunnel became bigger and bigger, to where I adjusted to living (then liking and loving myself) with AS and AD/HD combined. Wasn't easy, and I wouldn't have traded any of what I went through in all this. I would encourage you to read the book, " Aspergers: A Love Story " . Talks about how the guy has AS/HFA and she doesn't, and they have been seeing each other for like three years. Hope this helps... > > Hi, I've recently discovered I am in a 25 years relationship, though > technically not married, with a man who has the characteristics of > Asperger's. I realized this when I read _Connecting with your Asperger > Partner_ by Louise Weston and felt I was reading the story of the past > 25 years of my life. It answered years of questions and I wish I'd had > the book 25 years ago so I'd know what he needed from me. I have > figured a lot out over the years, and have many new questions that > aren't even formulated yet. I am 72 years old and Tom is 67. > > I continue reading about Asperger's and relationships. Other than my > adult children who have always been aware there is something " different " > about Tom, no one I know understands Aspergers or what living with Tom > is like. I'm not sure what this discovery will even mean. > > I wonder how other people handle Aspergers. I've never been in any > type of online group and so am exploring new territory. Judy Lennon > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2011 Report Share Posted July 30, 2011 Thanks for sharing this. I'll check out the book. My partner, Tom, doesn't know he has AS, and I don't think he'd believe me if I told him. Was it helpful to you to find out you had AS? Judy L Hi Judy..... I had a difficult time handling it at first. I have heard many times, where people felt a good sense of relief in knowing "well this is what makes me or this person 'different'". But not so with me. I was someone who has accomplished much in different parts of my life (academically, leadership, etc.). But when I was diagnosed with AS and then AD/HD combined just a few weeks apart from each other, I felt as if someone threw me against a wall and then down to the ground. I lived through days, when I wondered why I had completed graduate school or accomplished this or that. Fortunately, the light at the end of the tunnel became bigger and bigger, to where I adjusted to living (then liking and loving myself) with AS and AD/HD combined. Wasn't easy, and I wouldn't have traded any of what I went through in all this. I would encourage you to read the book, "Aspergers: A Love Story". Talks about how the guy has AS/HFA and she doesn't, and they have been seeing each other for like three years. Hope this helps... > > Hi, I've recently discovered I am in a 25 years relationship, though > technically not married, with a man who has the characteristics of > Asperger's. I realized this when I read _Connecting with your Asperger > Partner_ by Louise Weston and felt I was reading the story of the past > 25 years of my life. It answered years of questions and I wish I'd had > the book 25 years ago so I'd know what he needed from me. I have > figured a lot out over the years, and have many new questions that > aren't even formulated yet. I am 72 years old and Tom is 67. > > I continue reading about Asperger's and relationships. Other than my > adult children who have always been aware there is something "different" > about Tom, no one I know understands Aspergers or what living with Tom > is like. I'm not sure what this discovery will even mean. > > I wonder how other people handle Aspergers. I've never been in any > type of online group and so am exploring new territory. Judy Lennon > No virus found in this message. Checked by AVG - www.avg.com Version: 10.0.1390 / Virus Database: 1518/3797 - Release Date: 07/29/11 Quote Link to comment Share on other sites More sharing options...
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