Guest guest Posted March 10, 2007 Report Share Posted March 10, 2007 Hi e, Welcome to the group. I did not find it for a couple years. There is so much information that is passed around. Lots of CHARGER's from new born through grown ups! I have an 11 yr old. She also had a trach and still has a feeding tube. Lots of surgeries early on. It does get better! My daughter, 's trach came out when she was 8 yrs. I think most come out earlier. There is a lot to figure out, will you have help? We still have nursing help. They taught us a lot. There is also the foundation, becoming a member is very helpful. you can go the website to get membership information. The conferences every other year are great as well. We are all here for you, anything at all you want to ask, ask away, you will receive lots of help and support. Cathie, mom to , 11yr CHARGEr <BR><BR><BR>**************************************<BR> AOL now offers free email to everyone. Find out more about what's free from AOL at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2007 Report Share Posted March 10, 2007 Welcome and Logan!!! You will find much support here!!!! If you have any questions, just ask away!! Tia <BR><BR><BR>**************************************<BR> AOL now offers free email to everyone. Find out more about what's free from AOL at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2007 Report Share Posted March 10, 2007 e, Welcome to the listserv and congratulations on the birth of Logan. It *will * seem overwhelming at first but eventually you'll get used to the craziness and it'll just be normal to you believe it or not. Just try and remember to take it one day at a time. I still remember how nervous we were bringing Kennedy home nine years ago with all the medical equipment, specialists, appointments, therapies, etc. Last night, she went to a sleepover with Brownies without me - she took her tube feeding stuff and fed herself and it turned out fine. She had a great time. It does get better, I promise! I look forward to hearing more about Logan. Hugs, www.chargesyndrome.info On 3/10/07, brandie.m.biszantz@... wrote: > > > > Hello, > > I am a new mom to a baby boy with Charge. Logan ph Scalf was born on > 12/7/06 and is still at Riley Hospital for Children in Indianapolis, IN. > He is the sweetest thing ever. He is due to be discharged on March 20. I > am excited about bringing him home but a tad nervous as well. From what I > have been reading I can see that I will be really overwhelmed. > Logan joins big brother, 4 year old, Shane . We are all excited > about the new addition. Logan has had quite an adventurous life. He has > had multiple surgeries. His most recent being a tracheostomy and a Mic-Key > button before he's discharged. I don't know how this forum works but if > anyone has any great advice, I am willing to listen. Thank you for all > your support. I look forward to building relationships with others that > have been blessed with a child with Charge. > > Thank you, > > e > > This e-mail may contain data that is confidential, proprietary or > non-public personal information, as that term is defined in the > Gramm-Leach-Bliley Act (collectively, Confidential Information). > The Confidential Information is disclosed conditioned upon your > agreement that you will treat it confidentially and in accordance > with applicable law, ensure that such data isn't used or disclosed > except for the limited purpose for which it's being provided and > will notify and cooperate with us regarding any requested or > unauthorized disclosure or use of any Confidential Information. > By accepting and reviewing the Confidential information, you agree > to indemnify us against any losses or expenses, including > attorney's fees that we may incur as a result of any unauthorized > use or disclosure of this data due to your acts or omissions. If a > party other than the intended recipient receives this e-mail, he or > she is requested to instantly notify us of the erroneous delivery > and return to us all data so delivered. > > -- " It is far better to grasp the universe as it really is than to persist in delusion, however satisfying and reassuring. " --Carl Sagan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2007 Report Share Posted March 10, 2007 e: Congratulations! The road is a bit rocky at times, but it is really worth it! We live in Noblesville, and was at Riley a lot. She also had a trach (0-3 years) and a Mik-Key button through age 9. If you need to talk, you can reach me at . Friends in CHARGE, Marilyn Ogan Mom of (14, CHARGE+, JRA) Mom of Ken (17, Aspergers) Wife of Rick oganm@... _____ From: CHARGE [mailto:CHARGE ] On Behalf Of brandie.m.biszantz@... Sent: Saturday, March 10, 2007 12:24 PM To: charge Subject: New Member Hello, I am a new mom to a baby boy with Charge. Logan ph Scalf was born on 12/7/06 and is still at Riley Hospital for Children in Indianapolis, IN. He is the sweetest thing ever. He is due to be discharged on March 20. I am excited about bringing him home but a tad nervous as well. From what I have been reading I can see that I will be really overwhelmed. Logan joins big brother, 4 year old, Shane . We are all excited about the new addition. Logan has had quite an adventurous life. He has had multiple surgeries. His most recent being a tracheostomy and a Mic-Key button before he's discharged. I don't know how this forum works but if anyone has any great advice, I am willing to listen. Thank you for all your support. I look forward to building relationships with others that have been blessed with a child with Charge. Thank you, e _,_._,___ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2007 Report Share Posted March 10, 2007 Hi , my name is and I have a 21 month older little girl named Alissa with Charge. Welcome to the group. This group is fantastic!! If you have any questions, this is the place to ask. Between the experienced moms and dads, and medical professionals, and yound adults with charge that participate in this group, you are in great hands! At least thats how I feel. There aren't many families in my area with children with charge, so being able to come to the group and ask questions has made me alot more prepared to handle anything that comes my way with Alissa with confidence. Without this group I honestly can say I would be lost. Enjoy it!! Im sure you will meet lifelong friends you never thought you would or could here. Take care and if you have any questions at all feel free to ask. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2007 Report Share Posted March 10, 2007 Welcome my name is Crystal and I have a 22 month old daughter named Eva with CHARGE. I also have 2 boys one who was born early but they are both doing fine now. When you come home with Logan you will seemed alittle stressed out and you will seemed overwhelmed, BUT before you know it it will be 2nd nature to you and you will forget how you felt at the beginning. Hang in there and feel free to come in and ask questions whenever you need too. Hugs, Crystal mom to (11), (3), and Eva (22 month old CHARGEr) wife to Dan in Illinois www.babysites.com/sites/crystalm1476/ > > > > Hello, > > I am a new mom to a baby boy with Charge. Logan ph Scalf was born on > 12/7/06 and is still at Riley Hospital for Children in Indianapolis, IN. > He is the sweetest thing ever. He is due to be discharged on March 20. I > am excited about bringing him home but a tad nervous as well. From what I > have been reading I can see that I will be really overwhelmed. > Logan joins big brother, 4 year old, Shane . We are all excited > about the new addition. Logan has had quite an adventurous life. He has > had multiple surgeries. His most recent being a tracheostomy and a Mic-Key > button before he's discharged. I don't know how this forum works but if > anyone has any great advice, I am willing to listen. Thank you for all > your support. I look forward to building relationships with others that > have been blessed with a child with Charge. > > Thank you, > > e > > This e-mail may contain data that is confidential, proprietary or > non-public personal information, as that term is defined in the > Gramm-Leach-Bliley Act (collectively, Confidential Information). > The Confidential Information is disclosed conditioned upon your > agreement that you will treat it confidentially and in accordance > with applicable law, ensure that such data isn't used or disclosed > except for the limited purpose for which it's being provided and > will notify and cooperate with us regarding any requested or > unauthorized disclosure or use of any Confidential Information. > By accepting and reviewing the Confidential information, you agree > to indemnify us against any losses or expenses, including > attorney's fees that we may incur as a result of any unauthorized > use or disclosure of this data due to your acts or omissions. If a > party other than the intended recipient receives this e-mail, he or > she is requested to instantly notify us of the erroneous delivery > and return to us all data so delivered. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2007 Report Share Posted March 10, 2007 e & Logan, Welcome to the group! Our son Cameron is 5 and was not diagnosed until he was about 18 months old so I didn't find this list as early as you have. Cameron had a g-tube for 2 1/2 years and has many other challenges but was never trached. You'll quickly learn that this list is an incredibly compassionate, supportive and knowledgeable group of people. As we say, on this list we " get it " when it comes to the issues, challenges and blessings of having a child with CHARGE. Again welcome and post any questions you have. Mom to Cameron, 5 (CHaRGE) and , almost 7 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2007 Report Share Posted March 11, 2007 welcome as you can see this list is diverse im a charger from aus im 21 ive had many surgeries but doing fine now hugs and ask us any questions you want but pls tell us more about ur son wat aspects of charge he has in ere we are a family one of the other mums put a poem boutcyper families and that is us ive got the gtub have had a jstoma got hearing probs vision probs cleft lip palate and growth probs and other stuff hugs all the way fromaus ellen > > e & Logan, > Welcome to the group! Our son Cameron is 5 and was not diagnosed until > he was about 18 months old so I didn't find this list as early as you > have. Cameron had a g-tube for 2 1/2 years and has many other challenges > but was never trached. > > You'll quickly learn that this list is an incredibly compassionate, > supportive and knowledgeable group of people. As we say, on this list we > " get it " when it comes to the issues, challenges and blessings of having > a child with CHARGE. > > Again welcome and post any questions you have. > > Mom to Cameron, 5 (CHaRGE) and , almost 7 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2007 Report Share Posted March 11, 2007 e, Congratulations and welcome. Please kiss Logan on his beautiful face and tell him this is from his CHARGE family. I send my love and support for Logan, you, and your family. mom to (31) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2007 Report Share Posted March 21, 2007 michalel isnt there a 50 siomething year old carhger in england and mary kay was in hder 50s tio ellen in aus > > , > > I am the father of a 9-year-old boy with CHARGE Syndrome. The symptoms you > describe are consistent with CHARGE. Coloboma is found in CHARGE and in only > a few other syndromes. Genital apolasia, growth hormone deficiency and > delayed puberty are common in CHARGE as well. Could the balance problems and > ataxia be caused by inner ear problems (common in CHARGE) and muscle tone > issues (which my son has)? > > Do you have other common chacteristics of CHARGE: heart defects, hearing > loss, neurological issues? There is also a common CHARGE face (square face, > arched eyebrows, unusal external ears). > > The criteria are described in > http://www.chargesyndrome.org/about-charge.asp . There is a blood test for > the CHD-7 gene which accounts for maybe 70% of CHARGE cases, but it is > probably expensive. > > CHARGE Syndrome had not yet been identified when you were born, but I am > sure that some people were born with it. If you in fact have CHARGE, I > believe that you will be the oldest known person with it since most other > cases before 1978 were never identified! > > Good luck in your quest! > > -Mike Schwartz in Ventura, California > Posted by: " rgoodlobby@... <rgoodlobby%40aol.com> " rgoodlobby@...<rgoodlobby%40aol.com>Mon Mar 19, 2007 4:54 am (PST) > Good morning. My name is , I am 54 years old, live in Florida, and I > > am new to the group. I have retinal colobomas, Ataxic cerebral palsy which > > affects my balance, and genital apoplasia, and growth hormone deficiency. > I did > not go through puberty until I was 20 and cannot have children, although I > > adopted a daughter. I am a geriatric social worker. > > For over 50 years I always wondered if there was a connection between > these > problems. After hearing about CHARGE and reading up on it, I feel this may > be > the missing link and want to learn more. Is there any male adult in the > group with these medical issues? I look forward to participating in the > group. I > am also part of the Coloboma group. G FL > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2007 Report Share Posted March 21, 2007 , We did have one lady ( Kay) who is in her fifties on the list for a while; I met her at one of the conferences a few years back, and Clive in England as well (he has a web site: http://www.geocities.com/cguil_UK/ ) I agree with that your symptoms DO sound like CHARGE. You could try to find a geneticist familiar with it or get the blood test done to check for certain. Have you seen any other people's pictures who have CHARGE? There's similarity in their faces, do they look like you did when you were younger? There's a link to the picture page at the bottom of each email, it's http://www.imagestation.com/album/?id=2117043995 Looking forward to hearing more from you! www.chargesyndrome.info > > , > > I am the father of a 9-year-old boy with CHARGE Syndrome. The symptoms you > describe are consistent with CHARGE. Coloboma is found in CHARGE and in only > a few other syndromes. Genital apolasia, growth hormone deficiency and > delayed puberty are common in CHARGE as well. Could the balance problems and > ataxia be caused by inner ear problems (common in CHARGE) and muscle tone > issues (which my son has)? > > Do you have other common chacteristics of CHARGE: heart defects, hearing > loss, neurological issues? There is also a common CHARGE face (square face, > arched eyebrows, unusal external ears). > > The criteria are described in > http://www.chargesyndrome.org/about-charge.asp . There is a blood test for > the CHD-7 gene which accounts for maybe 70% of CHARGE cases, but it is > probably expensive. > > CHARGE Syndrome had not yet been identified when you were born, but I am > sure that some people were born with it. If you in fact have CHARGE, I > believe that you will be the oldest known person with it since most other > cases before 1978 were never identified! > > Good luck in your quest! > > -Mike Schwartz in Ventura, California > Posted by: " rgoodlobby@... <rgoodlobby%40aol.com> " rgoodlobby@...<rgoodlobby%40aol.com>Mon Mar 19, 2007 4:54 am (PST) > Good morning. My name is , I am 54 years old, live in Florida, and I > > am new to the group. I have retinal colobomas, Ataxic cerebral palsy which > > affects my balance, and genital apoplasia, and growth hormone deficiency. > I did > not go through puberty until I was 20 and cannot have children, although I > > adopted a daughter. I am a geriatric social worker. > > For over 50 years I always wondered if there was a connection between > these > problems. After hearing about CHARGE and reading up on it, I feel this may > be > the missing link and want to learn more. Is there any male adult in the > group with these medical issues? I look forward to participating in the > group. I > am also part of the Coloboma group. G FL > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 23, 2011 Report Share Posted December 23, 2011 My name is Dani and I am six years separated from my NADA. I moved out just after I turned 18, but slightly before I graduated HS. I put myself through most of college, but have yet to finish due to expense. Life is in a more normalized state for me, after 4 solid years of being more alone and lost than I was in my relationship with my abusive NADA. Coming out of survival mode I experimented with drugs and other destructive relationships until I settled on the fact that I'm actually a good, talented person who shouldn't waste herself. In 6 months time I will be getting married. I have corrected a lot of my bad behavior and attitude, but now it's time to get rid of those nagging fleas so we can build a healthy family. My fiance suspects his mother may be BPD also and has expressed that he does not want her to have a large involvement in our children's lives. Thankfully, she lives far enough away that it won't seem like we are doing it to her purposely. I have met her only a few times, but I have seen her rage. It was enough to convince me (along with stories of his childhood) that our mothers have a lot in common. My SO and I are luckily fairly well-adjusted (to my judgement) and actively try not to be like our parents. He went through 7 months of intensive in-patient therapy about 6 years back and I have been to therapists in my most desperate times and when I could find them pro-bono. To my relief, OZ has provided me with a name for my learned behavior through my mother--fleas! How appropriate. I have come to OZ to get rid of my fleas. Sometimes I don't realize how my actions and thought processes are incorrect until someone points it out. It's almost like culture shock. Quote Link to comment Share on other sites More sharing options...
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