Guest guest Posted September 5, 2002 Report Share Posted September 5, 2002 Hi Elaine, Welcome to the group....wonderful people here, you'll grow to just love everyone! You are in the right place....i too had regrets about past but now is the time to look forward and cherish the dreams that we all wish to come true! Best of luck to you and hope to get to know you....one of my buddies from the TR lives in Texas.....where you from?? your new friend, D from WA state Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2002 Report Share Posted September 5, 2002 Yes, you are right. DD is dear daughter, ds is dear son, dh is dear husband... etc. in MI DD 4/91 DD 6/94 TL 6/94 TR 4/02 EDD 3/03 new to group > > > Hello everyone....My name is Elaine and I am going to have my > reversal done in the fall of 2003..Trying to save up now for it. I > am 34y/o, and live in Texas. I have a 16 and 13 y/o from my first > marriage. Had my tubes tied 7/97, seperated from my husband in 6/98, > divorced 2/99, remarried 9/00. I should have NEVER gotten my tubes > tied, but my first husband and I were married 10 years at that time > and I thought things were great for my family...If I had known that > he had already been cheating on me for 4 years before my surgery and > after it, I would have never had the surgery...But I have moved on > with my life and remarried and my husband now and I want another > baby. I pray everyday and dream every night that I have the surgery > and get preg. I pray Dr. Levin can help us achieve a miracle. > I have also signed on the Buddy List to see if anyone needs a buddy > for either Aug,Sept,Nov. 2003. Hope to hear from ya'll soon.... > Elaine > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2003 Report Share Posted June 10, 2003 Hi , Welcome to the group. I look forward to hearing more about Cameron. Elaine Mum to Elise (11yrs) & Jack (5yrs) CHaRGE Scotland. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2003 Report Share Posted June 10, 2003 Welcome. My son, Dylan, is almost 7 and is also a CHaRGE kid. Luckily no choanal atresia for us. He is also mostly healthy and communication is still his biggest hurdle. He is just now starting to attend visually to sign, so yeah for Cameron already watching. Dylan still has his g-tube and likely will long term, although many CHARGErs outgrow theirs much earlier. Keep us posted how Cameron does and we will offer our experiences; sometimes they connect with you and help, other times no, but always we offer support. How nice to have Marlyn close by, what a wonderful support she is. Kim in Tucson Dylan 6 CHaRGE, Kayla 12, Tyler 15 On 6/9/03 10:32 PM, " becsterbear@... " wrote: > Hello! I'm so glad I found this group. My name is and our second > son Cameron was born last March (3/4/02). Our path with him began with > an ultrasound before his birth where his cleft lip (and palate) was > discovered. Oh how I wish we had " only " cleft to deal with. > Unfortunately Cam was born with a host of mid line birth defects > including the cleft, slight coloboma in one eye, 2 heart murmurs (not on > medication or any restrictions), swallowing issues (on a Mikey g-tube > but eating graham crackers and mac/cheese), reflux (subsided), > asymmetrical hearing loss (severe/profound), undescended testicle and > hypotonia. He does have residual hearing. > > As we were still undiagnosed last summer I posted his challenges on > Cleft Talk and someone suggested looking into CHARGE. I asked our ped. > at Children's if she thought Cameron had CHARGE. At the time she said no > as he just doesn't have the classic look of CHARGE and other than the > feeding tube he's been pretty healthy. Although he seems to have colds > much longer than our 3 year old son and it is usually accompanied by a > harsh cough which often causes him to throw up. > > After the first of the year we started at our local Hearing, Speech and > Deafness Clinic in its birth to three program as we didn't get his > hearing loss diagnosis until December (we tried two other times for a > BAER, anyway...) The social worker there (HSDC) - Marlyn Minkin (sp) > asked me if we'd considered CHARGE. So I contacted Meg at the foundation > and after telling her about Cameron she thought that, yes, he may be a > CHARGE kid. To make sure we are following up with Dr. Pagon at > Children's in Seattle (where we live). Unfortunately her first available > appointment is in November. But I did order the CHARGE manual and > already have found it a great help. > > I say this with mixed feelings...I am so glad to find this group of > parents. I have been searching for over a year for a community of > parents who have children like Cameron. Since his birth I've been > hovering in several groups - feeding issues, hearing loss, cleft, > developmental delay. Cameron continues to make strides developmentally > and his greatest asset is his determination. At 15 months old he's been > assessed to be functioning at a 10 month old level for motor skills > (crawling, wobbly when walking with assistance) and cognitively he's at > a 12-13 month level. His biggest challenge is communication. He makes a > few signs - baby signs - but when someone is signing ASL he really takes > note. > > I noticed that the signature line for a child with CHARGE has a > variation on lower and upper case letters. I'm guessing that identifies > which characteristics of the syndrome the child has. I guess for Cameron > his CHARGE would look like - CHaRGE? > > I look forward to connecting with the board and am grateful for your > existence! > > > Seattle WA, > mom to 3, and Cameron 15 months 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 June 10, 2003 Report Share Posted June 10, 2003 Your son sounds very similar to mine, although my son was very sick in the early years. But he doesn't have a characteristic CHARGE look either. Outside of his cleft lip, he looks pretty typical. I wanted to make sure you knew about e-stim for feeding issues. Since your son is healthy, he would probably be a good candidate for this treatment early on. It has helped many CHARGE kids a lot (but not all). If you don't know about it, e-mail back and we will give you the information. We are glad you found the list. Ask any questions you want. Deedee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2003 Report Share Posted June 10, 2003 Kim, I think somewhere in the CHARGE manual a cleft is considered to be an " atresia " of sorts which is what the A in CHARGE stands for. I am not sure which publication I had read it in at the moment. My son Mark was born with a cleft lip. Welcome to our group, it is a wealth of information and support. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2003 Report Share Posted June 10, 2003 , Hi! I am a friend of , 22, CHARGE. We live about an hour south of you, in Gig Harbor. While is 22, she is much younger developmentally, yet she makes strides every day. Will you be going to the conference in Cleveland? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2003 Report Share Posted June 10, 2003 Bebecca, Our daughter is 18 and we never had a diagnosis. I found out about CHARGE one year ago. This list is wonderful. The people here are wonderful. Blessings and Hugs. Lynn Mom to Tom23,, 18 cHARGEr, wife to Doug > Hello! I'm so glad I found this group. My name is and our second > son Cameron was born last March (3/4/02). Our path with him began with > an ultrasound before his birth where his cleft lip (and palate) was > discovered. Oh how I wish we had " only " cleft to deal with. > Unfortunately Cam was born with a host of mid line birth defects > including the cleft, slight coloboma in one eye, 2 heart murmurs (not on > medication or any restrictions), swallowing issues (on a Mikey g- tube > but eating graham crackers and mac/cheese), reflux (subsided), > asymmetrical hearing loss (severe/profound), undescended testicle and > hypotonia. He does have residual hearing. > > As we were still undiagnosed last summer I posted his challenges on > Cleft Talk and someone suggested looking into CHARGE. I asked our ped. > at Children's if she thought Cameron had CHARGE. At the time she said no > as he just doesn't have the classic look of CHARGE and other than the > feeding tube he's been pretty healthy. Although he seems to have colds > much longer than our 3 year old son and it is usually accompanied by a > harsh cough which often causes him to throw up. > > After the first of the year we started at our local Hearing, Speech and > Deafness Clinic in its birth to three program as we didn't get his > hearing loss diagnosis until December (we tried two other times for a > BAER, anyway...) The social worker there (HSDC) - Marlyn Minkin (sp) > asked me if we'd considered CHARGE. So I contacted Meg at the foundation > and after telling her about Cameron she thought that, yes, he may be a > CHARGE kid. To make sure we are following up with Dr. Pagon at > Children's in Seattle (where we live). Unfortunately her first available > appointment is in November. But I did order the CHARGE manual and > already have found it a great help. > > I say this with mixed feelings...I am so glad to find this group of > parents. I have been searching for over a year for a community of > parents who have children like Cameron. Since his birth I've been > hovering in several groups - feeding issues, hearing loss, cleft, > developmental delay. Cameron continues to make strides developmentally > and his greatest asset is his determination. At 15 months old he's been > assessed to be functioning at a 10 month old level for motor skills > (crawling, wobbly when walking with assistance) and cognitively he's at > a 12-13 month level. His biggest challenge is communication. He makes a > few signs - baby signs - but when someone is signing ASL he really takes > note. > > I noticed that the signature line for a child with CHARGE has a > variation on lower and upper case letters. I'm guessing that identifies > which characteristics of the syndrome the child has. I guess for Cameron > his CHARGE would look like - CHaRGE? > > I look forward to connecting with the board and am grateful for your > existence! > > > Seattle WA, > mom to 3, and Cameron 15 months CHaRGE. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2003 Report Share Posted June 10, 2003 Welcome to the group!!the manual will help--the best thing is attending a conference--like the one in cleaveland the end of july. again welcome. , mom to Timmy 7.5 ChARGE, keegan, 5 liam 2.5, wife to pat New to group > Hello! I'm so glad I found this group. My name is and our second > son Cameron was born last March (3/4/02). Our path with him began with > an ultrasound before his birth where his cleft lip (and palate) was > discovered. Oh how I wish we had " only " cleft to deal with. > Unfortunately Cam was born with a host of mid line birth defects > including the cleft, slight coloboma in one eye, 2 heart murmurs (not on > medication or any restrictions), swallowing issues (on a Mikey g-tube > but eating graham crackers and mac/cheese), reflux (subsided), > asymmetrical hearing loss (severe/profound), undescended testicle and > hypotonia. He does have residual hearing. > > As we were still undiagnosed last summer I posted his challenges on > Cleft Talk and someone suggested looking into CHARGE. I asked our ped. > at Children's if she thought Cameron had CHARGE. At the time she said no > as he just doesn't have the classic look of CHARGE and other than the > feeding tube he's been pretty healthy. Although he seems to have colds > much longer than our 3 year old son and it is usually accompanied by a > harsh cough which often causes him to throw up. > > After the first of the year we started at our local Hearing, Speech and > Deafness Clinic in its birth to three program as we didn't get his > hearing loss diagnosis until December (we tried two other times for a > BAER, anyway...) The social worker there (HSDC) - Marlyn Minkin (sp) > asked me if we'd considered CHARGE. So I contacted Meg at the foundation > and after telling her about Cameron she thought that, yes, he may be a > CHARGE kid. To make sure we are following up with Dr. Pagon at > Children's in Seattle (where we live). Unfortunately her first available > appointment is in November. But I did order the CHARGE manual and > already have found it a great help. > > I say this with mixed feelings...I am so glad to find this group of > parents. I have been searching for over a year for a community of > parents who have children like Cameron. Since his birth I've been > hovering in several groups - feeding issues, hearing loss, cleft, > developmental delay. Cameron continues to make strides developmentally > and his greatest asset is his determination. At 15 months old he's been > assessed to be functioning at a 10 month old level for motor skills > (crawling, wobbly when walking with assistance) and cognitively he's at > a 12-13 month level. His biggest challenge is communication. He makes a > few signs - baby signs - but when someone is signing ASL he really takes > note. > > I noticed that the signature line for a child with CHARGE has a > variation on lower and upper case letters. I'm guessing that identifies > which characteristics of the syndrome the child has. I guess for Cameron > his CHARGE would look like - CHaRGE? > > I look forward to connecting with the board and am grateful for your > existence! > > > Seattle WA, > mom to 3, and Cameron 15 months 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 June 10, 2003 Report Share Posted June 10, 2003 What is e-stim? My 5yod is tube fed, but she love to pretend to eat. Right now she eats everything with katsup. I am worried that sometimes she aspirates it (the pink secretions from the trach is a dead give-away). On the otherhand, she is doing oral-stim. I would rather find a safer way. I also don't like the color of blue that she turns when I take the food away from her. Also, she is homebound, so I pretty much homeschool her. The 4 hours a week the teacher comes seems minimal, especially on DB time. Any ideas would be appreciated. I am trying to come up with a Kindergarten curriculum for August to supplement the district's. Thanks, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2003 Report Share Posted June 10, 2003 hi, Welcome! My little charge'r is Josh and he is 9 months old. He was diagnosed a few months after his birth, although charge was third on the 'list' of possible diagnosis. Josh also has a cleft lip and palate - I know what you mean when you say " only " had cleft to deal with :0) I posted a question about the usage of letters, lower case/upper case a while ago. Various responses, most thinking was that " A " stands for artiesia (sp?!), and this isn't a cleft, although clefting may come as a subgroup in this area. The usage of the letters is a little outdated, as since they were coined quite a few other conditions have been shown to occur also. It is also difficult to gauge severity. Having said that I find it useful, because it is quicker to type than all the things separately, and it gives a bit of info. If we all typed out our children's conditions our sig lines would get very long LOL. We only just found time to order the manual, and have found that it is very useful, especially the bits to photocopy and give to the specialists. Jo ds Ben 5-4-99, ds Josh 20-8-02 CHaRGE'r + uclbcp ----- Original Message ----- .. But I did order the CHARGE manual and > already have found it a great help. > > I noticed that the signature line for a child with CHARGE has a > variation on lower and upper case letters. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2003 Report Share Posted June 10, 2003 , Welcome to the list and regardless of the outcome of a definitive diagnosis you will be welcome here and I'm sure find lots of advice & help when you need it as Cameron (if he doesn't end up having CHARGE) has many CHARGE-like symptoms and many families will have gone through similiar things as you guys are. ~ 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 New to group Hello! I'm so glad I found this group. My name is and our second son Cameron was born last March (3/4/02). Our path with him began with an ultrasound before his birth where his cleft lip (and palate) was discovered. Oh how I wish we had " only " cleft to deal with. Unfortunately Cam was born with a host of mid line birth defects including the cleft, slight coloboma in one eye, 2 heart murmurs (not on medication or any restrictions), swallowing issues (on a Mikey g-tube but eating graham crackers and mac/cheese), reflux (subsided), asymmetrical hearing loss (severe/profound), undescended testicle and hypotonia. He does have residual hearing. As we were still undiagnosed last summer I posted his challenges on Cleft Talk and someone suggested looking into CHARGE. I asked our ped. at Children's if she thought Cameron had CHARGE. At the time she said no as he just doesn't have the classic look of CHARGE and other than the feeding tube he's been pretty healthy. Although he seems to have colds much longer than our 3 year old son and it is usually accompanied by a harsh cough which often causes him to throw up. After the first of the year we started at our local Hearing, Speech and Deafness Clinic in its birth to three program as we didn't get his hearing loss diagnosis until December (we tried two other times for a BAER, anyway...) The social worker there (HSDC) - Marlyn Minkin (sp) asked me if we'd considered CHARGE. So I contacted Meg at the foundation and after telling her about Cameron she thought that, yes, he may be a CHARGE kid. To make sure we are following up with Dr. Pagon at Children's in Seattle (where we live). Unfortunately her first available appointment is in November. But I did order the CHARGE manual and already have found it a great help. I say this with mixed feelings...I am so glad to find this group of parents. I have been searching for over a year for a community of parents who have children like Cameron. Since his birth I've been hovering in several groups - feeding issues, hearing loss, cleft, developmental delay. Cameron continues to make strides developmentally and his greatest asset is his determination. At 15 months old he's been assessed to be functioning at a 10 month old level for motor skills (crawling, wobbly when walking with assistance) and cognitively he's at a 12-13 month level. His biggest challenge is communication. He makes a few signs - baby signs - but when someone is signing ASL he really takes note. I noticed that the signature line for a child with CHARGE has a variation on lower and upper case letters. I'm guessing that identifies which characteristics of the syndrome the child has. I guess for Cameron his CHARGE would look like - CHaRGE? I look forward to connecting with the board and am grateful for your existence! Seattle WA, mom to 3, and Cameron 15 months CHaRGE. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2003 Report Share Posted June 11, 2003 Hi : Welcome! Your email really hit home for me. My daughter Sara is now 12 years old and she too was also born with a wide cleft lip and palate. I remember thinking " I wish it was just a cleft " We just finally zeroed in on the charge diagnosis in the last few years. She also has a lot of mid line issues. Good luck. , Mom to Sara 12 (Charge), 7, and wife to Mark. >From: becsterbear@... >Reply-To: CHARGE >To: CHARGE >Subject: New to group >Date: Mon, 09 Jun 2003 22:32:50 -0700 > >Hello! I'm so glad I found this group. My name is and our second >son Cameron was born last March (3/4/02). Our path with him began with >an ultrasound before his birth where his cleft lip (and palate) was >discovered. Oh how I wish we had " only " cleft to deal with. >Unfortunately Cam was born with a host of mid line birth defects >including the cleft, slight coloboma in one eye, 2 heart murmurs (not on >medication or any restrictions), swallowing issues (on a Mikey g-tube >but eating graham crackers and mac/cheese), reflux (subsided), >asymmetrical hearing loss (severe/profound), undescended testicle and >hypotonia. He does have residual hearing. > >As we were still undiagnosed last summer I posted his challenges on >Cleft Talk and someone suggested looking into CHARGE. I asked our ped. >at Children's if she thought Cameron had CHARGE. At the time she said no >as he just doesn't have the classic look of CHARGE and other than the >feeding tube he's been pretty healthy. Although he seems to have colds >much longer than our 3 year old son and it is usually accompanied by a >harsh cough which often causes him to throw up. > >After the first of the year we started at our local Hearing, Speech and >Deafness Clinic in its birth to three program as we didn't get his >hearing loss diagnosis until December (we tried two other times for a >BAER, anyway...) The social worker there (HSDC) - Marlyn Minkin (sp) >asked me if we'd considered CHARGE. So I contacted Meg at the foundation >and after telling her about Cameron she thought that, yes, he may be a >CHARGE kid. To make sure we are following up with Dr. Pagon at >Children's in Seattle (where we live). Unfortunately her first available >appointment is in November. But I did order the CHARGE manual and >already have found it a great help. > >I say this with mixed feelings...I am so glad to find this group of >parents. I have been searching for over a year for a community of >parents who have children like Cameron. Since his birth I've been >hovering in several groups - feeding issues, hearing loss, cleft, >developmental delay. Cameron continues to make strides developmentally >and his greatest asset is his determination. At 15 months old he's been >assessed to be functioning at a 10 month old level for motor skills >(crawling, wobbly when walking with assistance) and cognitively he's at >a 12-13 month level. His biggest challenge is communication. He makes a >few signs - baby signs - but when someone is signing ASL he really takes >note. > >I noticed that the signature line for a child with CHARGE has a >variation on lower and upper case letters. I'm guessing that identifies >which characteristics of the syndrome the child has. I guess for Cameron >his CHARGE would look like - CHaRGE? > >I look forward to connecting with the board and am grateful for your >existence! > > >Seattle WA, >mom to 3, and Cameron 15 months CHaRGE. > > > > _________________________________________________________________ MSN 8 with e-mail virus protection service: 2 months FREE* http://join.msn.com/?page=features/virus Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2003 Report Share Posted June 12, 2003 , This is my first time on the message board even though I have been a member of the CHARGE Foundation since my son's birth almost one year ago. I am finally finding the time to reach out to others who are sharing similar issues as we are. Your story is interesting to me as our children are almost the same age (Ethan was born 6/12/02). It sounds like your son is doing wonderful. Ethan's diagnosis of CHARGE was given within 12 hours after he was born. It was probably because he has many of the characteristics of CHARGE. He spent the first 3 1/2 months of his life in the hospital and has been readmitted about once a month for very short visits. Ethan was born with choanal atresia (surgery performed successfully), micropenis, undecended testes, profound/moderate hearing loss, swallowing issues, and colobomas. Even though we were feeding Ethan by g-tube, he developed aspirational pneumonia from refluxing. Unfortunately, from this, he developed chronic lung disease and required oxygen almost all of the time. At 6 months old, we ended up traching him. I think that is what has kept him alive to this point, but we now rely upon 16 hours a day of nurses to help with his cares. Developmentally Ethan is about at a 6 month level. We know that all of the hospitalizations and the trach has slowed down his progress. We are hoping for a healthy summer. Thanks for listening. Jody, mom to Ethan (CHARGE)and , 4 > Hi : > > Welcome! Your email really hit home for me. My daughter Sara is now 12 > years old and she too was also born with a wide cleft lip and palate. I > remember thinking " I wish it was just a cleft " We just finally zeroed in on > the charge diagnosis in the last few years. She also has a lot of mid line > issues. > > Good luck. > > , Mom to Sara 12 (Charge), 7, and wife to Mark. > > > >From: becsterbear@e... > >Reply-To: CHARGE > >To: CHARGE > >Subject: New to group > >Date: Mon, 09 Jun 2003 22:32:50 -0700 > > > >Hello! I'm so glad I found this group. My name is and our second > >son Cameron was born last March (3/4/02). Our path with him began with > >an ultrasound before his birth where his cleft lip (and palate) was > >discovered. Oh how I wish we had " only " cleft to deal with. > >Unfortunately Cam was born with a host of mid line birth defects > >including the cleft, slight coloboma in one eye, 2 heart murmurs (not on > >medication or any restrictions), swallowing issues (on a Mikey g- tube > >but eating graham crackers and mac/cheese), reflux (subsided), > >asymmetrical hearing loss (severe/profound), undescended testicle and > >hypotonia. He does have residual hearing. > > > >As we were still undiagnosed last summer I posted his challenges on > >Cleft Talk and someone suggested looking into CHARGE. I asked our ped. > >at Children's if she thought Cameron had CHARGE. At the time she said no > >as he just doesn't have the classic look of CHARGE and other than the > >feeding tube he's been pretty healthy. Although he seems to have colds > >much longer than our 3 year old son and it is usually accompanied by a > >harsh cough which often causes him to throw up. > > > >After the first of the year we started at our local Hearing, Speech and > >Deafness Clinic in its birth to three program as we didn't get his > >hearing loss diagnosis until December (we tried two other times for a > >BAER, anyway...) The social worker there (HSDC) - Marlyn Minkin (sp) > >asked me if we'd considered CHARGE. So I contacted Meg at the foundation > >and after telling her about Cameron she thought that, yes, he may be a > >CHARGE kid. To make sure we are following up with Dr. Pagon at > >Children's in Seattle (where we live). Unfortunately her first available > >appointment is in November. But I did order the CHARGE manual and > >already have found it a great help. > > > >I say this with mixed feelings...I am so glad to find this group of > >parents. I have been searching for over a year for a community of > >parents who have children like Cameron. Since his birth I've been > >hovering in several groups - feeding issues, hearing loss, cleft, > >developmental delay. Cameron continues to make strides developmentally > >and his greatest asset is his determination. At 15 months old he's been > >assessed to be functioning at a 10 month old level for motor skills > >(crawling, wobbly when walking with assistance) and cognitively he's at > >a 12-13 month level. His biggest challenge is communication. He makes a > >few signs - baby signs - but when someone is signing ASL he really takes > >note. > > > >I noticed that the signature line for a child with CHARGE has a > >variation on lower and upper case letters. I'm guessing that identifies > >which characteristics of the syndrome the child has. I guess for Cameron > >his CHARGE would look like - CHaRGE? > > > >I look forward to connecting with the board and am grateful for your > >existence! > > > > > >Seattle WA, > >mom to 3, and Cameron 15 months CHaRGE. > > > > > > > > > > _________________________________________________________________ > MSN 8 with e-mail virus protection service: 2 months FREE* > http://join.msn.com/?page=features/virus Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2003 Report Share Posted June 12, 2003 Happy Birthday to Ethan for tomorrow. Kim > , > This is my first time on the message board even though I have been a > member of the CHARGE Foundation since my son's birth almost one year > ago. I am finally finding the time to reach out to others who are > sharing similar issues as we are. Your story is interesting to me as > our children are almost the same age (Ethan was born 6/12/02). It > sounds like your son is doing wonderful. Ethan's diagnosis of CHARGE > was given within 12 hours after he was born. It was probably because > he has many of the characteristics of CHARGE. He spent the first 3 > 1/2 months of his life in the hospital and has been readmitted about > once a month for very short visits. Ethan was born with choanal > atresia (surgery performed successfully), micropenis, undecended > testes, profound/moderate hearing loss, swallowing issues, and > colobomas. Even though we were feeding Ethan by g-tube, he developed > aspirational pneumonia from refluxing. Unfortunately, from this, he > developed chronic lung disease and required oxygen almost all of the > time. At 6 months old, we ended up traching him. I think that is > what has kept him alive to this point, but we now rely upon 16 hours > a day of nurses to help with his cares. Developmentally Ethan is > about at a 6 month level. We know that all of the hospitalizations > and the trach has slowed down his progress. We are hoping for a > healthy summer. > > Thanks for listening. > Jody, mom to Ethan (CHARGE)and , 4 > >> Hi : >> >> Welcome! Your email really hit home for me. My daughter Sara is > now 12 >> years old and she too was also born with a wide cleft lip and > palate. I >> remember thinking " I wish it was just a cleft " We just finally > zeroed in on >> the charge diagnosis in the last few years. She also has a lot of > mid line >> issues. >> >> Good luck. >> >> , Mom to Sara 12 (Charge), 7, and wife to Mark. >> >> >>> From: becsterbear@e... >>> Reply-To: CHARGE >>> To: CHARGE >>> Subject: New to group >>> Date: Mon, 09 Jun 2003 22:32:50 -0700 >>> >>> Hello! I'm so glad I found this group. My name is and our > second >>> son Cameron was born last March (3/4/02). Our path with him began > with >>> an ultrasound before his birth where his cleft lip (and palate) was >>> discovered. Oh how I wish we had " only " cleft to deal with. >>> Unfortunately Cam was born with a host of mid line birth defects >>> including the cleft, slight coloboma in one eye, 2 heart murmurs > (not on >>> medication or any restrictions), swallowing issues (on a Mikey g- > tube >>> but eating graham crackers and mac/cheese), reflux (subsided), >>> asymmetrical hearing loss (severe/profound), undescended testicle > and >>> hypotonia. He does have residual hearing. >>> >>> As we were still undiagnosed last summer I posted his challenges on >>> Cleft Talk and someone suggested looking into CHARGE. I asked our > ped. >>> at Children's if she thought Cameron had CHARGE. At the time she > said no >>> as he just doesn't have the classic look of CHARGE and other than > the >>> feeding tube he's been pretty healthy. Although he seems to have > colds >>> much longer than our 3 year old son and it is usually accompanied > by a >>> harsh cough which often causes him to throw up. >>> >>> After the first of the year we started at our local Hearing, > Speech and >>> Deafness Clinic in its birth to three program as we didn't get his >>> hearing loss diagnosis until December (we tried two other times > for a >>> BAER, anyway...) The social worker there (HSDC) - Marlyn Minkin > (sp) >>> asked me if we'd considered CHARGE. So I contacted Meg at the > foundation >>> and after telling her about Cameron she thought that, yes, he may > be a >>> CHARGE kid. To make sure we are following up with Dr. Pagon at >>> Children's in Seattle (where we live). Unfortunately her first > available >>> appointment is in November. But I did order the CHARGE manual and >>> already have found it a great help. >>> >>> I say this with mixed feelings...I am so glad to find this group of >>> parents. I have been searching for over a year for a community of >>> parents who have children like Cameron. Since his birth I've been >>> hovering in several groups - feeding issues, hearing loss, cleft, >>> developmental delay. Cameron continues to make strides > developmentally >>> and his greatest asset is his determination. At 15 months old he's > been >>> assessed to be functioning at a 10 month old level for motor skills >>> (crawling, wobbly when walking with assistance) and cognitively > he's at >>> a 12-13 month level. His biggest challenge is communication. He > makes a >>> few signs - baby signs - but when someone is signing ASL he really > takes >>> note. >>> >>> I noticed that the signature line for a child with CHARGE has a >>> variation on lower and upper case letters. I'm guessing that > identifies >>> which characteristics of the syndrome the child has. I guess for > Cameron >>> his CHARGE would look like - CHaRGE? >>> >>> I look forward to connecting with the board and am grateful for > your >>> existence! >>> >>> >>> Seattle WA, >>> mom to 3, and Cameron 15 months CHaRGE. >>> >>> >>> >>> >> >> _________________________________________________________________ >> MSN 8 with e-mail virus protection service: 2 months FREE* >> http://join.msn.com/?page=features/virus > > > > 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 June 12, 2003 Report Share Posted June 12, 2003 Jody, Nice to meet you, I am glad you have nurse support to help you, sounds like you have your plate full! ~ 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 New to group > >Date: Mon, 09 Jun 2003 22:32:50 -0700 > > > >Hello! I'm so glad I found this group. My name is and our second > >son Cameron was born last March (3/4/02). Our path with him began with > >an ultrasound before his birth where his cleft lip (and palate) was > >discovered. Oh how I wish we had " only " cleft to deal with. > >Unfortunately Cam was born with a host of mid line birth defects > >including the cleft, slight coloboma in one eye, 2 heart murmurs (not on > >medication or any restrictions), swallowing issues (on a Mikey g- tube > >but eating graham crackers and mac/cheese), reflux (subsided), > >asymmetrical hearing loss (severe/profound), undescended testicle and > >hypotonia. He does have residual hearing. > > > >As we were still undiagnosed last summer I posted his challenges on > >Cleft Talk and someone suggested looking into CHARGE. I asked our ped. > >at Children's if she thought Cameron had CHARGE. At the time she said no > >as he just doesn't have the classic look of CHARGE and other than the > >feeding tube he's been pretty healthy. Although he seems to have colds > >much longer than our 3 year old son and it is usually accompanied by a > >harsh cough which often causes him to throw up. > > > >After the first of the year we started at our local Hearing, Speech and > >Deafness Clinic in its birth to three program as we didn't get his > >hearing loss diagnosis until December (we tried two other times for a > >BAER, anyway...) The social worker there (HSDC) - Marlyn Minkin (sp) > >asked me if we'd considered CHARGE. So I contacted Meg at the foundation > >and after telling her about Cameron she thought that, yes, he may be a > >CHARGE kid. To make sure we are following up with Dr. Pagon at > >Children's in Seattle (where we live). Unfortunately her first available > >appointment is in November. But I did order the CHARGE manual and > >already have found it a great help. > > > >I say this with mixed feelings...I am so glad to find this group of > >parents. I have been searching for over a year for a community of > >parents who have children like Cameron. Since his birth I've been > >hovering in several groups - feeding issues, hearing loss, cleft, > >developmental delay. Cameron continues to make strides developmentally > >and his greatest asset is his determination. At 15 months old he's been > >assessed to be functioning at a 10 month old level for motor skills > >(crawling, wobbly when walking with assistance) and cognitively he's at > >a 12-13 month level. His biggest challenge is communication. He makes a > >few signs - baby signs - but when someone is signing ASL he really takes > >note. > > > >I noticed that the signature line for a child with CHARGE has a > >variation on lower and upper case letters. I'm guessing that identifies > >which characteristics of the syndrome the child has. I guess for Cameron > >his CHARGE would look like - CHaRGE? > > > >I look forward to connecting with the board and am grateful for your > >existence! > > > > > >Seattle WA, > >mom to 3, and Cameron 15 months CHaRGE. > > > > > > > > > > _________________________________________________________________ > MSN 8 with e-mail virus protection service: 2 months FREE* > http://join.msn.com/?page=features/virus Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2003 Report Share Posted June 13, 2003 Jody, Nice to meet you too. Thanks for sharing your story with me. I know on many levels we are very lucky with Cameron - no trach or prolonged hospital stays when he was born. This is probably why it's been hard for us to get a diagnosis of CHARGE. I am glad that you have nursing support. A mom in our support group has a son with many, many medical issues (not a CHARGE kid) and is only able to get part time nursing help because of a shortage of nurses in the area. Mom to 3, Cameron 15 months possible CHaRGE and wife to Linden. Seattle, WA PS Thanks for such a warm welcome to this group! I hope to help other parents as we pace ourselves during this marathon of raising our children. I told our feeding therapist that Cameron's road to being tube-free is not a sprint but a marathon...sometimes the hills seem way too steep and you can't find a water station when you want it, but you have to pace yourself. And, no I am not a runner! > Jody, > Nice to meet you, I am glad you have nurse support to help you, sounds like you have your plate full! > ~ 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 > > > > Re: New to group > > > , > This is my first time on the message board even though I have been a > member of the CHARGE Foundation since my son's birth almost one year > ago. I am finally finding the time to reach out to others who are > sharing similar issues as we are. Your story is interesting to me as > our children are almost the same age (Ethan was born 6/12/02). It > sounds like your son is doing wonderful. Ethan's diagnosis of CHARGE > was given within 12 hours after he was born. It was probably because > he has many of the characteristics of CHARGE. He spent the first 3 > 1/2 months of his life in the hospital and has been readmitted about > once a month for very short visits. Ethan was born with choanal > atresia (surgery performed successfully), micropenis, undecended > testes, profound/moderate hearing loss, swallowing issues, and > colobomas. Even though we were feeding Ethan by g-tube, he developed > aspirational pneumonia from refluxing. Unfortunately, from this, he > developed chronic lung disease and required oxygen almost all of the > time. At 6 months old, we ended up traching him. I think that is > what has kept him alive to this point, but we now rely upon 16 hours > a day of nurses to help with his cares. Developmentally Ethan is > about at a 6 month level. We know that all of the hospitalizations > and the trach has slowed down his progress. We are hoping for a > healthy summer. > > Thanks for listening. > Jody, mom to Ethan (CHARGE)and , 4 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2009 Report Share Posted January 25, 2009 Julmz, I haven't had the back trouble you are having at this time but we have something else in common. I also was just sickened that I had to lose my job because of the disease that I developed after having my knee scoped out. The job I had was one that many people don't care to have and it is hard to find enough people to work it because of the pay. I was happy with the pay because it was starting off twice as much as what my job prior to paid me. My last job was one that I knew was one that required me to be on alert at all times and I had to be on my feet the majority of my 12 hour shift. I didn't mind because I enjoyed my job and I was very appreciated at my job because I actually did what I signed up for. Julmz wrote: > > I am just sickened to think that I am going to lose my job because of something that was unpreventable. > > Thank you. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2009 Report Share Posted March 7, 2009 I'm new to this whole message board thing, not to mention taking my first steps in severing my relationship with my BPD mother. Does anyone know of any support groups in NJ or BPD specialists? Need advice on how to proceed forward while ensuring the safety of myself and my pets. Background: mother lives in apartment below in 2 family house. Quote Link to comment Share on other sites More sharing options...
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