Guest guest Posted January 7, 2003 Report Share Posted January 7, 2003 Tim, Steve and everyone, Thanks for welcoming me to your group. I appreciate the encouragement and information. Re: New member Welcome , I'm sorry you have psc, glad you found thiswonderfully helpful group. We have our share of differences of opinionand hurt feelings, but on the whole we maintain a fairly civil discourse.With your UC and cholangitis attacks (fever & chills) under controlyou must be feeling pretty good for the first time in a few years. Iwould agree with your doctor, you shouldn't need a transplant any timesoon. Based on the symptoms & tests you describe, I estimate 5 to 8years of relatively stable health befor a 3 to 5 year decline puts youin need of a transplant.I had a transplant when I was 51 in 1998 after a long history ofelevated liver enzymes (LFTs) starting in 1980. An ERCP in 1989 leadto a diagnosis of PSC and low level urodiol treatment. I am one of the15 to 30% of transplantees who have PSC recur in their new liver. Irecently had a tube placed through my liver to assist in drainage.Although it hasn't been in for long, so far it is working well and Ihaven't had and cholangitis attacks since it was placed.Good luck to you and as Steve said, ask questions if you have them.Someone will probably be able to provide some enlightenment.Tim R--- In , " Soloway" <jsoloway@m...>> I just joined your group. I feeling like I am walking into themiddle of some old intimate relationships. But, I also see you folksare very kind to all, including newcomers. Here's my story:> > I am a 52 year old woman from Sacramento. One day in January 2000, Istarted having daily diarrhea. My doctor said I had irritable bowelsyndrome. After two years, a loss of 20 pounds and most of myappetite, I insisted on more tests. Everything including asigmoidoscopy was negative except an elevated alk phos level. Ultrasound showed a dialated bile duct. An ERCP showed stricture inthe common bile duct. I got a stent. Brushing ruled out cancer. 10 days later, in the doctor's office I developed severe chills andshakes and then high fever. I had an infection in my bile duct fromthe ERCP. The infection had spread to my blood. I had an emergencyERCP to remove the stent and spent 3 days on IV Cipro and Flagyl. Acolonoscopy in the hospital confirmed ulcers and polyps. Based on theUC and the stricture, and high alk phos, I got the PSC diagnosis.> > Two months later on a trip to Philadelphia, the shakes and chillsagain sent me to the ER. This time and MRCP (MRI) showed strictures inall the major braches of the biliary tree and the small branches onthe right side of my liver. Thankfully, the left side of the tree waspretty clean. The Philadelphia doctor suggested I get on a list. Iprepared myself for repeated infections and hospital stays. But,somehow my health has stabilized.> > My last hospital stay was in August 2001. My liver enzymes are fineas is my blood. I travel with Cipro in my bag just in case but havenot needed it. I am tired but still work full time. I retire in 18 months. I take 1500 milligrams of Ursodial daily and my hepatologistthinks that the Ursodiol may be helping me stay healthy. He saysthere is no reason to think about transplant for the forseeablefuture. I gained back all the weight loss, which is a bitdisappointing but makes the doctor happy. Also, my UC is controlledby 6 Asacol pills daily. I have faith that my liver is ticking alongsomehow despite the strictures. A positive attitude and Ursodiol isall I have to work with. My heart and prayers go out to all of you whoare in pain or itching and fighting for life. I have to admit I amvery scared of the day that I will be facing the same challenge. I amjust hoping for a few years of reasonable health after I retire. Thank you listening. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2003 Report Share Posted January 24, 2003 My name is . I am married w/ 4 daughters. My husbands name is . About a year ago he was diagnosed w/ psc and cholangiocarcinoma. We were sent to the Mayo clinic to see if he was a canidate for a transplant or removal of the tumor, but found out neither could happen. In April he started chemo and is still receiving it. He is feeling good and still working full time and continues to hunt, fish etc.... Hi Welcome to our group and so very sorry that has cholangiocarcinoma. Please do ask any questions you like, someone is bound to be able to answer it. I haven't got cc but I have had PSC (small-duct) for 30 yrs, so I guess I am one of the old-timers! I'm sure is in the best possible hands with Mayo Clinic as it is world famous for its research and treatment of PSC and all things connected with it. All the best for you and your husband, you'll find us a friendly bunch that talk about almost anything!! Barbara (UK) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2003 Report Share Posted June 30, 2003 Hey, welcome to the group Belinda 20yr CHARGEr New Member Hi, I just recently signed up to the CHARGE group unsure if this is where I needed to be. I said a prayer for some guidance towards my daughter's current health problems and while on the internet I found your Web Page. You see my daughter will be 14 yrs on July 12th. Her dx at birth was Bilateral Choanal Atresia with a functional heart murmur and an abdominal hernia. I have read some of your E-mails and was shocked to find other Choanal Atresia moms. You see for the first couple of years after le's birth, I tried to find information, people with similar situations, so I could have someone to talk too. Back then the internet was not available, we live in a small rural community and I felt I was all alone with no one really to understand. To make a long story short, le had three stent placements for her choanal atresia and has had 12 surgeries since birth trying to keep her airways open. We were also told at birth that she did not pass her hearing evaluation. We continued to take her in, but were told " mild hearing loss does not warrant hearing aides " . At the age of three, we found an audiologist that placed aides on her and she has had three sets since then and her hearing loss now is moderate to severe in the high frequency range. Now at the puberty stage, my daughter has been told that she has choanal female organs, uterus, cervix, etc. We were informed now after 14 years that during my pregnancy, your ears, nose, uterus and kidneys all develop at the same time and so far three out of the four organs has had deficits, so we are checking her kidneys out the middle of this month. I have read what CHARGE stands for, but have never had any of her Dr's even talk about your organization. It sounds like my daughter would fall under this group. I am looking for someone to talk to if there is someone with similar situations, but I am also looking for a female that has had some of these problems to talk with my daughter. She has felt all alone and different. I was hoping to find some help for her. Thank you for letting me share my story. Hasenkamp Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2003 Report Share Posted July 2, 2003 Hi , How is le's vision? Has she been checked out properly by an experienced ophthalmologist? While Coloboma (the eye malformation associated with CHARGE) is not always present, occurrence is quite high (I don't have my CHARGE manual handy but I think it's at least 80%), Coloboma is like a cleft, and can range between a bit of field loss (i.e.. white spots) to complete blindness. It is possible to function very well visually, so without a proper eye exam the Coloboma might otherwise go undetected. Where do you live? Is it near a major urban centre (university hospital etc.) Even if le doesn't have CHARGE, you are most welcome to stay on this list - your challenges sound familiar! Best of luck, Anne, mom of Penina (CHARGE, 6 1/2) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2003 Report Share Posted July 2, 2003 , ps are you anywhere near the Cleveland area? If so, it would really be worth coming to the International CHARGE conference this month. Please check with n Norbury (coordinates on CHARGE Syndrome Foundation web site) for more information. Anne, mom of Penina (CHARGE 6 3/4) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2003 Report Share Posted July 2, 2003 Hello and welcome to the list. I am 48 years old, live in Alabama, and found out less than 2 years ago that I have CHARGE. Kay She who laughs.... LASTS New Member > Hi, I just recently signed up to the CHARGE group unsure if this is > where I needed to be. I said a prayer for some guidance towards my > daughter's current health problems and while on the internet I found > your Web Page. You see my daughter will be 14 yrs on July 12th. Her dx > at birth was Bilateral Choanal Atresia with a functional heart murmur > and an abdominal hernia. I have read some of your E-mails and was > shocked to find other Choanal Atresia moms. You see for the first > couple of years after le's birth, I tried to find information, > people with similar situations, so I could have someone to talk too. > Back then the internet was not available, we live in a small rural > community and I felt I was all alone with no one really to understand. > To make a long story short, le had three stent placements for her > choanal atresia and has had 12 surgeries since birth trying to keep her > airways open. We were also told at birth that she did not pass her > hearing evaluation. We continued to take her in, but were told " mild > hearing loss does not warrant hearing aides " . At the age of three, we > found an audiologist that placed aides on her and she has had three sets > since then and her hearing loss now is moderate to severe in the high > frequency range. Now at the puberty stage, my daughter has been told > that she has choanal female organs, uterus, cervix, etc. We were > informed now after 14 years that during my pregnancy, your ears, nose, > uterus and kidneys all develop at the same time and so far three out of > the four organs has had deficits, so we are checking her kidneys out the > middle of this month. I have read what CHARGE stands for, but have > never had any of her Dr's even talk about your organization. It sounds > like my daughter would fall under this group. I am looking for someone > to talk to if there is someone with similar situations, but I am also > looking for a female that has had some of these problems to talk with my > daughter. She has felt all alone and different. I was hoping to find > some help for her. Thank you for letting me share my story. > Hasenkamp > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2003 Report Share Posted July 2, 2003 , Welcome to the group! My daughter is 5 and has had 7 surgeries for choanal atresia. I'm sure you'll find the list helpful, even without a CHARGE dx. Will you be seeing a geneticist at any point? If so, I'd recommend trying to find someone familiar with CHARGE. Weir Mom to Kennedy, 5 yr old CHARGEr, 13, 12 and wife to Graeme New Brunswick, Canada http://personal.nbnet.nb.ca/gweir http://www.chargesyndrome.ca New Member Hi, I just recently signed up to the CHARGE group unsure if this is where I needed to be. I said a prayer for some guidance towards my daughter's current health problems and while on the internet I found your Web Page. You see my daughter will be 14 yrs on July 12th. Her dx at birth was Bilateral Choanal Atresia with a functional heart murmur and an abdominal hernia. I have read some of your E-mails and was shocked to find other Choanal Atresia moms. You see for the first couple of years after le's birth, I tried to find information, people with similar situations, so I could have someone to talk too. Back then the internet was not available, we live in a small rural community and I felt I was all alone with no one really to understand. To make a long story short, le had three stent placements for her choanal atresia and has had 12 surgeries since birth trying to keep her airways open. We were also told at birth that she did not pass her hearing evaluation. We continued to take her in, but were told " mild hearing loss does not warrant hearing aides " . At the age of three, we found an audiologist that placed aides on her and she has had three sets since then and her hearing loss now is moderate to severe in the high frequency range. Now at the puberty stage, my daughter has been told that she has choanal female organs, uterus, cervix, etc. We were informed now after 14 years that during my pregnancy, your ears, nose, uterus and kidneys all develop at the same time and so far three out of the four organs has had deficits, so we are checking her kidneys out the middle of this month. I have read what CHARGE stands for, but have never had any of her Dr's even talk about your organization. It sounds like my daughter would fall under this group. I am looking for someone to talk to if there is someone with similar situations, but I am also looking for a female that has had some of these problems to talk with my daughter. She has felt all alone and different. I was hoping to find some help for her. Thank you for letting me share my story. Hasenkamp Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2003 Report Share Posted July 2, 2003 , Your story sounds kind of like ours. Our is 18 and I found CHARGE one year ago. The specialist never put it together because one by one many of the " problems " were fixed as well as possible. Stay with the list and you will learn a lot. You are not alone any more. had choanal atresia too plus much more. I was so alone 18 years ago. For many of us pray has been the best answer. Welcome. Lynn, Mom to Tom24, 18, cHARGE and wife to Doug Ohio > Hi, I just recently signed up to the CHARGE group unsure if this is > where I needed to be. I said a prayer for some guidance towards my > daughter's current health problems and while on the internet I found > your Web Page. You see my daughter will be 14 yrs on July 12th. Her dx > at birth was Bilateral Choanal Atresia with a functional heart murmur > and an abdominal hernia. I have read some of your E-mails and was > shocked to find other Choanal Atresia moms. You see for the first > couple of years after le's birth, I tried to find information, > people with similar situations, so I could have someone to talk too. > Back then the internet was not available, we live in a small rural > community and I felt I was all alone with no one really to understand. > To make a long story short, le had three stent placements for her > choanal atresia and has had 12 surgeries since birth trying to keep her > airways open. We were also told at birth that she did not pass her > hearing evaluation. We continued to take her in, but were told " mild > hearing loss does not warrant hearing aides " . At the age of three, we > found an audiologist that placed aides on her and she has had three sets > since then and her hearing loss now is moderate to severe in the high > frequency range. Now at the puberty stage, my daughter has been told > that she has choanal female organs, uterus, cervix, etc. We were > informed now after 14 years that during my pregnancy, your ears, nose, > uterus and kidneys all develop at the same time and so far three out of > the four organs has had deficits, so we are checking her kidneys out the > middle of this month. I have read what CHARGE stands for, but have > never had any of her Dr's even talk about your organization. It sounds > like my daughter would fall under this group. I am looking for someone > to talk to if there is someone with similar situations, but I am also > looking for a female that has had some of these problems to talk with my > daughter. She has felt all alone and different. I was hoping to find > some help for her. Thank you for letting me share my story. > Hasenkamp > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2003 Report Share Posted July 2, 2003 We have had her vision checked by an ophthalmologist approximately 6 months ago. I remember that my insurance covers for an eye test once a year and she asked approximately 6 months ago to have her eyes rechecked, she wears contacts. They didn't see any difference in her vision. I guess I am not familiar with Coloboma? Do you have to go to a specialist? Re: New Member Hi , How is le's vision? Has she been checked out properly by an experienced ophthalmologist? While Coloboma (the eye malformation associated with CHARGE) is not always present, occurrence is quite high (I don't have my CHARGE manual handy but I think it's at least 80%), Coloboma is like a cleft, and can range between a bit of field loss (i.e.. white spots) to complete blindness. It is possible to function very well visually, so without a proper eye exam the Coloboma might otherwise go undetected. Where do you live? Is it near a major urban centre (university hospital etc.) Even if le doesn't have CHARGE, you are most welcome to stay on this list - your challenges sound familiar! Best of luck, Anne, mom of Penina (CHARGE, 6 1/2) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2003 Report Share Posted July 2, 2003 We live in Kansas. Thank you for all the information. This is most helpful. God Bless ! Re: New Member , ps are you anywhere near the Cleveland area? If so, it would really be worth coming to the International CHARGE conference this month. Please check with n Norbury (coordinates on CHARGE Syndrome Foundation web site) for more information. Anne, mom of Penina (CHARGE 6 3/4) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2003 Report Share Posted July 2, 2003 Thank you for E-mailing me. I greatly appreciate your interest. We saw a geneticist approximately 6 years ago and at that time they did not say anything. Sounds like we need to see another one. Hasenkamp Mom to Brent 17, le 13, Breanna 4 and wife to Dan Kansas New Member Hi, I just recently signed up to the CHARGE group unsure if this is where I needed to be. I said a prayer for some guidance towards my daughter's current health problems and while on the internet I found your Web Page. You see my daughter will be 14 yrs on July 12th. Her dx at birth was Bilateral Choanal Atresia with a functional heart murmur and an abdominal hernia. I have read some of your E-mails and was shocked to find other Choanal Atresia moms. You see for the first couple of years after le's birth, I tried to find information, people with similar situations, so I could have someone to talk too. Back then the internet was not available, we live in a small rural community and I felt I was all alone with no one really to understand. To make a long story short, le had three stent placements for her choanal atresia and has had 12 surgeries since birth trying to keep her airways open. We were also told at birth that she did not pass her hearing evaluation. We continued to take her in, but were told " mild hearing loss does not warrant hearing aides " . At the age of three, we found an audiologist that placed aides on her and she has had three sets since then and her hearing loss now is moderate to severe in the high frequency range. Now at the puberty stage, my daughter has been told that she has choanal female organs, uterus, cervix, etc. We were informed now after 14 years that during my pregnancy, your ears, nose, uterus and kidneys all develop at the same time and so far three out of the four organs has had deficits, so we are checking her kidneys out the middle of this month. I have read what CHARGE stands for, but have never had any of her Dr's even talk about your organization. It sounds like my daughter would fall under this group. I am looking for someone to talk to if there is someone with similar situations, but I am also looking for a female that has had some of these problems to talk with my daughter. She has felt all alone and different. I was hoping to find some help for her. Thank you for letting me share my story. Hasenkamp Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2003 Report Share Posted July 2, 2003 Where are you in Kansas? We are in Missouri. Martha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2003 Report Share Posted July 2, 2003 Hello , Welcome to the list. Our youngest daughter is 16 years old and has CHARGE. Her issues appear different than your daughter's. One person that reminds me of your situation somewhat is Ludwig. Her daughter is close in age to yours and seems to have a somewhat similar profile. Perhaps she or someone else will write about their child. It's good to meet you. I know nothing about the female organ difficulties you mentioned, but perhaps someone else here does. The choanal atresia, hearing loss and the heart issues are certainly common in CHARGE. Does your daughter have unique ears? How was her eating when she was little? Good swallow? Very best wishes, Re: New Member Hello and welcome to the list. I am 48 years old, live in Alabama, and found out less than 2 years ago that I have CHARGE. Kay She who laughs.... LASTS New Member > Hi, I just recently signed up to the CHARGE group unsure if this is > where I needed to be. I said a prayer for some guidance towards my > daughter's current health problems and while on the internet I found > your Web Page. You see my daughter will be 14 yrs on July 12th. Her > dx at birth was Bilateral Choanal Atresia with a functional heart > murmur and an abdominal hernia. I have read some of your E-mails and > was shocked to find other Choanal Atresia moms. You see for the first > couple of years after le's birth, I tried to find information, > people with similar situations, so I could have someone to talk too. > Back then the internet was not available, we live in a small rural > community and I felt I was all alone with no one really to understand. > To make a long story short, le had three stent placements for > her choanal atresia and has had 12 surgeries since birth trying to keep her > airways open. We were also told at birth that she did not pass her > hearing evaluation. We continued to take her in, but were told " mild > hearing loss does not warrant hearing aides " . At the age of three, we > found an audiologist that placed aides on her and she has had three > sets since then and her hearing loss now is moderate to severe in the > high frequency range. Now at the puberty stage, my daughter has been > told that she has choanal female organs, uterus, cervix, etc. We were > informed now after 14 years that during my pregnancy, your ears, nose, > uterus and kidneys all develop at the same time and so far three out > of the four organs has had deficits, so we are checking her kidneys > out the middle of this month. I have read what CHARGE stands for, but > have never had any of her Dr's even talk about your organization. It > sounds like my daughter would fall under this group. I am looking for > someone to talk to if there is someone with similar situations, but I > am also looking for a female that has had some of these problems to > talk with my daughter. She has felt all alone and different. I was > hoping to find some help for her. Thank you for letting me share my > story. Hasenkamp > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2003 Report Share Posted July 3, 2003 , How far is the drive from Kansas to Cleveland? .... Think about it ;-) July 25-27 !!!!!! Best, Anne, mom of Penina CHARGE 6 3/4 dhsnkamp wrote: > Thank you for E-mailing me. I greatly appreciate your interest. We saw > a geneticist approximately 6 years ago and at that time they did not say > anything. Sounds like we need to see another one. > Hasenkamp > Mom to Brent 17, le 13, Breanna 4 and wife to Dan > Kansas > > New Member > > > Hi, I just recently signed up to the CHARGE group unsure if this is > where I needed to be. I said a prayer for some guidance towards my > daughter's current health problems and while on the internet I found > your Web Page. You see my daughter will be 14 yrs on July 12th. Her > dx > at birth was Bilateral Choanal Atresia with a functional heart murmur > and an abdominal hernia. I have read some of your E-mails and was > shocked to find other Choanal Atresia moms. You see for the first > couple of years after le's birth, I tried to find information, > people with similar situations, so I could have someone to talk too. > Back then the internet was not available, we live in a small rural > community and I felt I was all alone with no one really to understand. > To make a long story short, le had three stent placements for > her > choanal atresia and has had 12 surgeries since birth trying to keep > her > airways open. We were also told at birth that she did not pass her > hearing evaluation. We continued to take her in, but were told " mild > hearing loss does not warrant hearing aides " . At the age of three, we > found an audiologist that placed aides on her and she has had three > sets > since then and her hearing loss now is moderate to severe in the high > frequency range. Now at the puberty stage, my daughter has been told > that she has choanal female organs, uterus, cervix, etc. We were > informed now after 14 years that during my pregnancy, your ears, nose, > uterus and kidneys all develop at the same time and so far three out > of > the four organs has had deficits, so we are checking her kidneys out > the > middle of this month. I have read what CHARGE stands for, but have > never had any of her Dr's even talk about your organization. It > sounds > like my daughter would fall under this group. I am looking for > someone > to talk to if there is someone with similar situations, but I am also > looking for a female that has had some of these problems to talk with > my > daughter. She has felt all alone and different. I was hoping to find > some help for her. Thank you for letting me share my story. > Hasenkamp > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2003 Report Share Posted July 3, 2003 Welcome to the group... I am new, too. Although, unlike you, we were lucky enough to learn our daughter's diagnoses right away. This list is wonderful... everyone here, as you can already see, is very helpful. Kristi Mommy to Gracie (11 weeks), wife to & Dog mom to Sophie :-) Roseville, CA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2003 Report Share Posted July 3, 2003 Hi , Big difference between an ophthalmologist and an optometrist. Here in Canada optometrists are familiar with many of the eye conditions ( " diseases " I have heard them say). But Coloboma is sufficiently rare that an optometrist unfamiliar with the condition might not catch a small cleft if not looking for it. My daughter was diagnosed with Coloboma at a few days old, by accident. A resident was examining her and noticed two notched pupils (they call it " keyhole shaped " ). That indicated a malformation of the iris. In her case, my daughter also has Coloboma n the retina and macula which very much limits her vision. That confirmation from a genetic ophthalmologist familiar with Coloboma and CHARGE Syndrome led to other CHARGE related investigations, including spinal X-rays, abdominal ultrasounds, echocardiograms (they already knew about a heart murmur) etc. The most valuable test was the ABR to determine approximately what her hearing would be. This was all coordinated by a geneticist. But I digress... The definition of Coloboma from www.chargesyndrome.org is: > C = Coloboma > > A coloboma is a cleft or failure to close of the eyeball. This can > result in a keyhole shaped pupil and/or abnormalities in the retina or > optic nerve. Colobomas of the retina or optic nerve may result in > significant vision loss, especially visual field defects in the upper > half of the visual field. Visual acuity may also be affected, > resulting in nearsightedness or farsightedness. Surgery cannot correct > ocular colobomas, but glasses often help with visual acuity. Children > with CHARGE Syndrome are often very sensitive to light. Many are more > comfortable with sunglasses, even indoors. > Hope that helps. Anne, mom of Penina (CHARGE, 6 3/4) dhsnkamp wrote: > We have had her vision checked by an ophthalmologist approximately 6 > months ago. I remember that my insurance covers for an eye test once a > year and she asked approximately 6 months ago to have her eyes > rechecked, she wears contacts. They didn't see any difference in her > vision. I guess I am not familiar with Coloboma? Do you have to go to > a specialist? > > Re: New Member > > Hi , > > How is le's vision? Has she been checked out properly by an > experienced ophthalmologist? While Coloboma (the eye malformation > associated with CHARGE) is not always present, occurrence is quite high > (I don't have my CHARGE manual handy but I think it's at least 80%), > Coloboma is like a cleft, and can range between a bit of field loss > (i.e.. white spots) to complete blindness. It is possible to function > very well visually, so without a proper eye exam the Coloboma might > otherwise go undetected. > > Where do you live? Is it near a major urban centre (university hospital > etc.) > > Even if le doesn't have CHARGE, you are most welcome to stay on > this list - your challenges sound familiar! > > > Best of luck, > > Anne, mom of Penina (CHARGE, 6 1/2) > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2003 Report Share Posted July 3, 2003 About 120 miles north west of Kansas City, Missouri. A small town called Centralia. Re: New Member Where are you in Kansas? We are in Missouri. Martha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2003 Report Share Posted July 3, 2003 We are in Pittsfield, IL -- about 40 minutes east of Hannibal. According to Yahoo Maps, we are about 2.5 hours away from each other. Do you doctor in St Louis? We go to Children's. Perhaps we could meet in the middle some time? Do you guys do Raging Rivers? We'll be going some time this summer, but I usually don't take Aubrie. She doesn't enjoy water enough yet so it's a good outing for and I to have quality time together. You know, Meg Hefner, the genetic counselor on the list, is in St Louis as well. If you really want to know if le has CHARGE, make an appt to see Meg. Michele W mom to Aubrie 5 yrs CHaRgE and 11 yrs Re: New Member Where are you in Kansas? We are in Missouri. Martha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 4, 2003 Report Share Posted July 4, 2003 Is that Centralia KS? I grew up not too far from there! Take the journey of a Lifetime; You'll be glad you did! http://www.replicate99.com/globalwealth/2257.shtml -- __________________________________________________________ Sign-up for your own FREE Personalized E-mail at Mail.com http://www.mail.com/?sr=signup CareerBuilder.com has over 400,000 jobs. Be smarter about your job search http://corp.mail.com/careers Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 4, 2003 Report Share Posted July 4, 2003 Yes, where did you live? RE: New Member Is that Centralia KS? I grew up not too far from there! Take the journey of a Lifetime; You'll be glad you did! http://www.replicate99.com/globalwealth/2257.shtml -- __________________________________________________________ Sign-up for your own FREE Personalized E-mail at Mail.com http://www.mail.com/?sr=signup CareerBuilder.com has over 400,000 jobs. Be smarter about your job search http://corp.mail.com/careers 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 July 5, 2003 Report Share Posted July 5, 2003 Thank you for the Welcome!! Re: New Member Welcome to the group... I am new, too. Although, unlike you, we were lucky enough to learn our daughter's diagnoses right away. This list is wonderful... everyone here, as you can already see, is very helpful. Kristi Mommy to Gracie (11 weeks), wife to & Dog mom to Sophie :-) Roseville, CA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2003 Report Share Posted July 5, 2003 Sorry, it has taken me a couple days to write. Everyone has been so nice. Hopefully I can help someone someday the way you have all helped me. I have talked with Meg. She is a wealth of information and is currently helping us. We don¡Çt doctor in St. Louis, usually Kansas City at Children¡Çs Mercy, but you never know, we may have to make a trip. Our oldest son plays MAYB basketball, so on weekends we are at basketball tournaments in Kansas. We have never done ¡ÈRaging Rivers¡É, but it sounds fun. We are always willing to try anything. Again, thank you for all your information. Have a Great Weekend!! Re: New Member We are in Pittsfield, IL -- about 40 minutes east of Hannibal. According to Yahoo Maps, we are about 2.5 hours away from each other. Do you doctor in St Louis? We go to Children's. Perhaps we could meet in the middle some time? Do you guys do Raging Rivers? We'll be going some time this summer, but I usually don't take Aubrie. She doesn't enjoy water enough yet so it's a good outing for and I to have quality time together. You know, Meg Hefner, the genetic counselor on the list, is in St Louis as well. If you really want to know if le has CHARGE, make an appt to see Meg. Michele W mom to Aubrie 5 yrs CHaRgE and 11 yrs Re: New Member Where are you in Kansas? We are in Missouri. Martha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2003 Report Share Posted July 5, 2003 Well, now that I realize you are in KS and not MO, we are much farther away than I thought! Guess we'll have to talk via the list rather than a real meeting for now. Michele W Aubrie's mom Re: New Member Where are you in Kansas? We are in Missouri. Martha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2003 Report Share Posted July 6, 2003 where in Kansas? I grew up in Beloit, and went to college in Emporia. maria mom to Timmy 7 3/4 ChARGE, keegan 5, liam 2.5 wife to pat Re: New Member > > Where are you in Kansas? We are in Missouri. Martha > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2003 Report Share Posted July 9, 2003 We live in Centralia, Kansas approximately 2 hours from Emporia. This is really funny, but I was in Emporia this weekend for a MAYB tournament that my 17year old son played in. This is definitely a small world. Where do you live now? How is your son doing? What Charge Dx does he have? Would love to hear from you. , mom to Brent 17, le 14 charge?, Breanna 4, wife to Dan Re: New Member where in Kansas? I grew up in Beloit, and went to college in Emporia. maria mom to Timmy 7 3/4 ChARGE, keegan 5, liam 2.5 wife to pat Re: New Member > > Where are you in Kansas? We are in Missouri. Martha > > > > > > Quote Link to comment Share on other sites More sharing options...
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