Guest guest Posted April 14, 1999 Report Share Posted April 14, 1999 hello. i also am new to chargelist. My name is debbie and i have an 8 year old son with charge. Regan is pretty lucky i guess. They say he has a mild case. He has the facial palsy and deafness in his left ear. He wears glasses but no coloboma. He does have pulmonary stenosis, and we've been lucky with that cause he so far has had no medication or surgeries. He had the cupped ear which he has had surgery for. it looks much better. He also had a gold-implant in his left eye to make it close at night but it didn't work and had to take it out and then got a cyst inside the eyelid and had to take it out also. He is learning disabled but we think it is due to the hearing. He now has an auditory trainer for hearing at school. He is also a llittle weak with his left arm and probably leg also(that is what the nuerologist said). I'm glad i finally am hearing from people who knows about this, i live in missouri and none of the doctors here know about it, just the ones that we see in st. louis. debbie and regan JLHDORAN@... wrote: > From: JLHDORAN@... > > Hi, > I thought I'd introduce our family because we just joined the CHARGE > list. My name is Doran. My husband and I have a wonderfully, > beautiful little boy named Hunter. He was born Feb. 19, 1998 and diagnosed > around day 2 with CHARGE. He did have unilateral choanal atresia, does have > retinal coloboma in both eyes, but one optical nerve is affected and one is > not. Therefore, in one eye we have pretty good vision. He was born with > severe to profound hearing loss in both ears. However, luckily, one ear is > now in the normal hearing range. We'll see - I've read that the hearing can > degenerate over time. We pray not! Anyhow, he is small for his age but not > terribly - still on the charts - they say he is very bright, which is > wonderful. He does not have any heart problems - Thank God! - nor does he > have any facial palsy, cleft palate or a trach. He does have a G-tube due to > aspiration when he was newborn. He no longer does that, but as I'm sure you > all know, the swallowing just is not fluid. He is doing MUCH better lately, > he's up to 3 jars of baby food a day and a LITTLE liquid. One of his vocal > folds is paralyzed, but let me tell you, he has learned to compensate!!! > When he wants something or is just being silly, you can hear him three rooms > away; Which is amazing because at birth you could not hear a thing above a > " purr " . He's pulling up on all of the furniture and is cruizing around but > still too shaky to venture into walking by himself. In time . . . > > We live in Orlando, Florida and therefore, love to go outside to the pool, > lake, ocean etc. However, we've been holding off until Hunter's G-tube is > taken out because we thought that he could not (or the stoma could not) be > submerged in the water. After reading your letter pertaining to in > the pool and her stoma, I'm assuming she was submerged. Is that true? If > so, we're so excited because that is one thing we've really been looking > forward to, is taking Hunter for a swim. It's wonderful hearing from and > about all of you. Thank you. > > The Dorans > > , & Hunter > > ------------------------------------------------------------------------ > Have you visited the new ONElist home page lately? > http://www.ONElist.com > ONElist: The Leading e-mail list and community service on the Internet! > ------------------------------------------------------------------------ > 4th International CHARGE Syndrome Conference, Houston, Texas, July > 23-25, 1999. > For information about the CHARGE Syndrome Foundation or to become a member > please contact marion@.... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 1999 Report Share Posted April 14, 1999 hello. my name is debbie and i have a son with charge also. His name is regan. He has the facial palsy, pulmonary stenosis, deafness in his left ear and learning disabled. He has a mild case i am told. He has had 4 or 5 sets of tubes, tonsils and adnoids out and ear surgery (for the cupshaped ear) he also had a gold implant in left eyelid to make it close at night, but was unsuccessful and had to take it out and then also devoloped a cyst in it and and had to have it removed also. we live in boring southeast missouri. good to hear from everyone..... Michele Westmaas wrote: > > > - > Glad to have you guys aboard! My daughter is 16 mos old, so she's > following close behind Hunter. I envy you living in beautiful Orlando! > We're in boring central IL... > > Michele > mom toAubrie (16 mos) CHaRgE and (7 yrs), wife to DJ, in IL > westml@... > > ------------------------------------------------------------------------ > Has ONElist changed your life? > http://www.ONElist.com > Visit our homepage and share with us your experiences at ONElist of the Week! > ------------------------------------------------------------------------ > 4th International CHARGE Syndrome Conference, Houston, Texas, July > 23-25, 1999. > For information about the CHARGE Syndrome Foundation or to become a member > please contact marion@.... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 1999 Report Share Posted April 15, 1999 Hi, I thought I'd introduce our family because we just joined the CHARGE list. My name is Doran. My husband and I have a wonderfully, beautiful little boy named Hunter. He was born Feb. 19, 1998 and diagnosed around day 2 with CHARGE. He did have unilateral choanal atresia, does have retinal coloboma in both eyes, but one optical nerve is affected and one is not. Therefore, in one eye we have pretty good vision. He was born with severe to profound hearing loss in both ears. However, luckily, one ear is now in the normal hearing range. We'll see - I've read that the hearing can degenerate over time. We pray not! Anyhow, he is small for his age but not terribly - still on the charts - they say he is very bright, which is wonderful. He does not have any heart problems - Thank God! - nor does he have any facial palsy, cleft palate or a trach. He does have a G-tube due to aspiration when he was newborn. He no longer does that, but as I'm sure you all know, the swallowing just is not fluid. He is doing MUCH better lately, he's up to 3 jars of baby food a day and a LITTLE liquid. One of his vocal folds is paralyzed, but let me tell you, he has learned to compensate!!! When he wants something or is just being silly, you can hear him three rooms away; Which is amazing because at birth you could not hear a thing above a " purr " . He's pulling up on all of the furniture and is cruizing around but still too shaky to venture into walking by himself. In time . . . We live in Orlando, Florida and therefore, love to go outside to the pool, lake, ocean etc. However, we've been holding off until Hunter's G-tube is taken out because we thought that he could not (or the stoma could not) be submerged in the water. After reading your letter pertaining to in the pool and her stoma, I'm assuming she was submerged. Is that true? If so, we're so excited because that is one thing we've really been looking forward to, is taking Hunter for a swim. It's wonderful hearing from and about all of you. Thank you. The Dorans , & Hunter Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 1999 Report Share Posted April 15, 1999 - Glad to have you guys aboard! My daughter is 16 mos old, so she's following close behind Hunter. I envy you living in beautiful Orlando! We're in boring central IL... Michele mom toAubrie (16 mos) CHaRgE and (7 yrs), wife to DJ, in IL westml@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 1999 Report Share Posted April 15, 1999 Hi Debbie, Welcome to the list! Janet Wife to Matt Mom to & (CHaRGEr) 7 on 5/7, nne 2, and Mom to 10 months (who has decided she wants her 2am feeding!!) and 19 months. Weymouth, Massachusetts Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 1999 Report Share Posted April 15, 1999 Hi , Welcome to the List! Janet Wife to Matt Mom to & (CHaRGEr) 7 on 5/7, nne 2, and Mom to 10 months, and 19 months. Weymouth, Massachusetts Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 1999 Report Share Posted April 15, 1999 , I am so happy you joined the list. I haven't heard from you in a while. I hope all is well. Are you guys going to the conference in Houston? Foley, Mom to , 3 1/2, (died w/CHARGE)and Jillian 1 w/cHaRgE Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 1999 Report Share Posted April 15, 1999 Debbie and Regan, WELCOME!!!!!!! The Foley's , and Jillian (wife to Jeff but he's not involved on the list)Jillian's my cHaRgE gal at 1 year old...('s my CHARGE guy in heaven)'s my 3 yera old who wears size 7/8 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 1999 Report Share Posted April 15, 1999 Debbie, and Regan, Welcome to the list! I " m so glad you found us, I hope you find it as helpful as we have over the last 14 months!!! Mom to Kennedy 14 mos old CHARGEr, 9, 8, and wife to Graeme New Brunswick, Canada Visit the " Weir's homepage " at: http://www.geocities.com/SunsetStrip/Palms/5716 ICQ #1426476 > > >hello. i also am new to chargelist. My name is debbie and i have an 8 year old >son with charge. Regan is pretty lucky i guess. They say he has a mild case. He >has the facial palsy and deafness in his left ear. He wears glasses but no >coloboma. He does have pulmonary stenosis, and we've been lucky with that cause >he so far has had no medication or surgeries. He had the cupped ear which he has >had surgery for. it looks much better. He also had a gold-implant in his left eye >to make it close at night but it didn't work and had to take it out and then got >a cyst inside the eyelid and had to take it out also. He is learning disabled but >we think it is due to the hearing. He now has an auditory trainer for hearing at >school. He is also a llittle weak with his left arm and probably leg also(that is >what the nuerologist said). I'm glad i finally am hearing from people who knows >about this, i live in missouri and none of the doctors here know about it, just >the ones that we see in st. louis. debbie and regan > >JLHDORAN@... wrote: > >> From: JLHDORAN@... >> >> Hi, >> I thought I'd introduce our family because we just joined the CHARGE >> list. My name is Doran. My husband and I have a wonderfully, >> beautiful little boy named Hunter. He was born Feb. 19, 1998 and diagnosed >> around day 2 with CHARGE. He did have unilateral choanal atresia, does have >> retinal coloboma in both eyes, but one optical nerve is affected and one is >> not. Therefore, in one eye we have pretty good vision. He was born with >> severe to profound hearing loss in both ears. However, luckily, one ear is >> now in the normal hearing range. We'll see - I've read that the hearing can >> degenerate over time. We pray not! Anyhow, he is small for his age but not >> terribly - still on the charts - they say he is very bright, which is >> wonderful. He does not have any heart problems - Thank God! - nor does he >> have any facial palsy, cleft palate or a trach. He does have a G-tube due to >> aspiration when he was newborn. He no longer does that, but as I'm sure you >> all know, the swallowing just is not fluid. He is doing MUCH better lately, >> he's up to 3 jars of baby food a day and a LITTLE liquid. One of his vocal >> folds is paralyzed, but let me tell you, he has learned to compensate!!! >> When he wants something or is just being silly, you can hear him three rooms >> away; Which is amazing because at birth you could not hear a thing above a >> " purr " . He's pulling up on all of the furniture and is cruizing around but >> still too shaky to venture into walking by himself. In time . . . >> >> We live in Orlando, Florida and therefore, love to go outside to the pool, >> lake, ocean etc. However, we've been holding off until Hunter's G-tube is >> taken out because we thought that he could not (or the stoma could not) be >> submerged in the water. After reading your letter pertaining to in >> the pool and her stoma, I'm assuming she was submerged. Is that true? If >> so, we're so excited because that is one thing we've really been looking >> forward to, is taking Hunter for a swim. It's wonderful hearing from and >> about all of you. Thank you. >> >> The Dorans >> >> , & Hunter >> >> ------------------------------------------------------------------------ >> Have you visited the new ONElist home page lately? >> http://www.ONElist.com >> ONElist: The Leading e-mail list and community service on the Internet! >> ------------------------------------------------------------------------ >> 4th International CHARGE Syndrome Conference, Houston, Texas, July >> 23-25, 1999. >> For information about the CHARGE Syndrome Foundation or to become a member >> please contact marion@.... > > > > >------------------------------------------------------------------------ >Share the wealth! >http://www.ONElist.com >Tell a friend about ONElist's 115,000 free e-mail communities! >------------------------------------------------------------------------ >4th International CHARGE Syndrome Conference, Houston, Texas, July >23-25, 1999. >For information about the CHARGE Syndrome Foundation or to become a member please contact marion@.... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 1999 Report Share Posted April 15, 1999 , & Hunter, Welcome to the list from the Weir's! Our daughter Kennedy was born on January 27th of 98, so our little chargers are very close in age! I was wondering if you could tell me how big Hunter is, it's just a curiousity thing with me, Kennedy is about 20lbs I think, she was 19lbs and some odd ounces last time we were weighed in February and I think she's gained a little since then... I hope you enjoy the list! Mom to Kennedy 14 mos old CHARGEr, 9, 8, and wife to Graeme New Brunswick, Canada Visit the " Weir's homepage " at: http://www.geocities.com/SunsetStrip/Palms/5716 ICQ #1426476 >JLHDORAN@... wrote: > >> From: JLHDORAN@... >> >> Hi, >> I thought I'd introduce our family because we just joined the CHARGE >> list. My name is Doran. My husband and I have a wonderfully, >> beautiful little boy named Hunter. He was born Feb. 19, 1998 and diagnosed >> around day 2 with CHARGE. He did have unilateral choanal atresia, does have >> retinal coloboma in both eyes, but one optical nerve is affected and one is >> not. Therefore, in one eye we have pretty good vision. He was born with >> severe to profound hearing loss in both ears. However, luckily, one ear is >> now in the normal hearing range. We'll see - I've read that the hearing can >> degenerate over time. We pray not! Anyhow, he is small for his age but not >> terribly - still on the charts - they say he is very bright, which is >> wonderful. He does not have any heart problems - Thank God! - nor does he >> have any facial palsy, cleft palate or a trach. He does have a G-tube due to >> aspiration when he was newborn. He no longer does that, but as I'm sure you >> all know, the swallowing just is not fluid. He is doing MUCH better lately, >> he's up to 3 jars of baby food a day and a LITTLE liquid. One of his vocal >> folds is paralyzed, but let me tell you, he has learned to compensate!!! >> When he wants something or is just being silly, you can hear him three rooms >> away; Which is amazing because at birth you could not hear a thing above a >> " purr " . He's pulling up on all of the furniture and is cruizing around but >> still too shaky to venture into walking by himself. In time . . . >> >> We live in Orlando, Florida and therefore, love to go outside to the pool, >> lake, ocean etc. However, we've been holding off until Hunter's G-tube is >> taken out because we thought that he could not (or the stoma could not) be >> submerged in the water. After reading your letter pertaining to in >> the pool and her stoma, I'm assuming she was submerged. Is that true? If >> so, we're so excited because that is one thing we've really been looking >> forward to, is taking Hunter for a swim. It's wonderful hearing from and >> about all of you. Thank you. >> >> The Dorans >> >> , & Hunter >> >> ------------------------------------------------------------------------ >> Have you visited the new ONElist home page lately? >> http://www.ONElist.com >> ONElist: The Leading e-mail list and community service on the Internet! >> ------------------------------------------------------------------------ >> 4th International CHARGE Syndrome Conference, Houston, Texas, July >> 23-25, 1999. >> For information about the CHARGE Syndrome Foundation or to become a member >> please contact marion@.... > > > > >------------------------------------------------------------------------ >Share the wealth! >http://www.ONElist.com >Tell a friend about ONElist's 115,000 free e-mail communities! >------------------------------------------------------------------------ >4th International CHARGE Syndrome Conference, Houston, Texas, July >23-25, 1999. >For information about the CHARGE Syndrome Foundation or to become a member please contact marion@.... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 1999 Report Share Posted April 15, 1999 Welcome to the Doran's! Hunter sounds like a jewel!! Glad to have you on the list! Jacque wife to Steve mom to Austin (4, Charge) & (1 on 4/29!) Rose Hill, KS Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 1999 Report Share Posted April 15, 1999 JLHDORAN@... wrote: > > From: JLHDORAN@... > > Hi, > I thought I'd introduce our family because we just joined the CHARGE > list. My name is Doran. My husband and I have a wonderfully, > beautiful little boy named Hunter. He was born Feb. 19, 1998 and diagnosed > around day 2 with CHARGE. He did have unilateral choanal atresia, does have > retinal coloboma in both eyes, but one optical nerve is affected and one is > not. Therefore, in one eye we have pretty good vision. He was born with > severe to profound hearing loss in both ears. However, luckily, one ear is > now in the normal hearing range. We'll see - I've read that the hearing can > degenerate over time. We pray not! Anyhow, he is small for his age but not > terribly - still on the charts - they say he is very bright, which is > wonderful. He does not have any heart problems - Thank God! - nor does he > have any facial palsy, cleft palate or a trach. He does have a G-tube due to > aspiration when he was newborn. He no longer does that, but as I'm sure you > all know, the swallowing just is not fluid. He is doing MUCH better lately, > he's up to 3 jars of baby food a day and a LITTLE liquid. One of his vocal > folds is paralyzed, but let me tell you, he has learned to compensate!!! > When he wants something or is just being silly, you can hear him three rooms > away; Which is amazing because at birth you could not hear a thing above a > " purr " . He's pulling up on all of the furniture and is cruizing around but > still too shaky to venture into walking by himself. In time . . . > > We live in Orlando, Florida and therefore, love to go outside to the pool, > lake, ocean etc. However, we've been holding off until Hunter's G-tube is > taken out because we thought that he could not (or the stoma could not) be > submerged in the water. After reading your letter pertaining to in > the pool and her stoma, I'm assuming she was submerged. Is that true? If > so, we're so excited because that is one thing we've really been looking > forward to, is taking Hunter for a swim. It's wonderful hearing from and > about all of you. Thank you. > > The Dorans > > , & Hunter > > Welcome to the Dorans! How lucky can you be; Disney World and all. Jeanie Colp mom to MacKenzie 10mos.CHARGE, Tyler 7, & Zachary 4 Nova Scotia, Canada Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 1999 Report Share Posted April 16, 1999 Debbie, Where are you in Southeast MO??? We live in Cape Girardeau. I have a son Peyton who is 2 & 1/2 w/ CHARGE!! We also go to St. Louis for doctors appts. I'm so excited to hear of somebody nearby!! Corrie Young mom to Peyton Re: swimming/buttons > > >hello. my name is debbie and i have a son with charge also. His name is regan. He >has the facial palsy, pulmonary stenosis, deafness in his left ear and learning >disabled. He has a mild case i am told. He has had 4 or 5 sets of tubes, tonsils >and adnoids out and ear surgery (for the cupshaped ear) he also had a gold >implant in left eyelid to make it close at night, but was unsuccessful and had to >take it out and then also devoloped a cyst in it and and had to have it removed >also. we live in boring southeast missouri. good to hear from everyone..... > >Michele Westmaas wrote: > >> >> >> - >> Glad to have you guys aboard! My daughter is 16 mos old, so she's >> following close behind Hunter. I envy you living in beautiful Orlando! >> We're in boring central IL... >> >> Michele >> mom toAubrie (16 mos) CHaRgE and (7 yrs), wife to DJ, in IL >> westml@... >> >> ------------------------------------------------------------------------ >> Has ONElist changed your life? >> http://www.ONElist.com >> Visit our homepage and share with us your experiences at ONElist of the Week! >> ------------------------------------------------------------------------ >> 4th International CHARGE Syndrome Conference, Houston, Texas, July >> 23-25, 1999. >> For information about the CHARGE Syndrome Foundation or to become a member >> please contact marion@.... > > > > >------------------------------------------------------------------------ >Looking to expand your world? >http://www.ONElist.com >ONElist has over 115,000 e-mail communities from which to chose! >------------------------------------------------------------------------ >4th International CHARGE Syndrome Conference, Houston, Texas, July >23-25, 1999. >For information about the CHARGE Syndrome Foundation or to become a member please contact marion@.... > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 1999 Report Share Posted April 16, 1999 hello. i'm just getting around to checking my emails today. I go to college all day on M-W-F. I'm a late bloomer for college, but we know how it is having sick children. I'm glad to hear Peyton is doing great. Yes, i did graduate from central in 1984. I don't know mike, but remember some Young life group, was mike in that? My sister was in it. I believe i might have had gym class with Pat in 10th or 11th grade. (Its been a long time ago!) Yes, we would love to get together sometime. Regan knows he has charge syndrome but really doesn't understand it . He is aware, he says he has a broken ear (deaf) but he has an auditory trainer for school. He knows he has to see the doctors alot and i'm trying to explain everything to him now cause he is very curious. Yes, Regan has a very mild case we are told, they even thought his heart murmer (pulmonary stenosis) which is a sticky valve would go away by age 5 , but he still has it and gets checked every year, (no medicine or surgeries yet). Whenever you would like to meet or get together, let us know. email us back! debbie and regan.. oh, what is the funding that everyone is talking about? is it for the conference? I just started on the email list, not quite sure of what everyone is talking about. debbie and regan Furniture Mike Young wrote: > From: spin1@... ( Furniture Mike Young) > > Debbie, > > I can't believe it either!! Peyton is 2 & 1/2 and has had a pretty full life > so far. He has had two open heart surgeries, TE fistula repair, > re-implantation of his uretor(which didn't work-he still has Grade 5 > Reflux-the worst level), a g-button placed, AV Fistula repair and his > tonsils and adenoids removed. We have spent a LOT of time at Children's > between these surgeries and other sickness(he was air vaced from Cape once > when we almost lost him). His last open heart was just a little over 3 > weeks ago. He's doing just great. > > He's at a 6-8 mo dev. level. He is an absolute joy. He gets home therapy > from the Spot and other individuals. Next fall he will go to the Early > Childhood program at Jefferson. At his IEP meeting, Ann Hogan mentioned > there had been another child with CHARGE that they served, but he was ver > ymild. I assumed that you were now out of the district from the way she > spoke. > > Since you have always lived here. You may know my husband, Mike. He went to > Central, he was the class of '86 and his brother , Pat " 83. He's out of town > now so I havn't been able to tell him about this. > > Maybe we could get together some time. I'd love to meet Regan!! > > E-mail me if you would like to do that!! > > Corrie Young > wife to Mike, mom to Peyton > Re: swimming/buttons > >> > >> > > >> > > >> >hello. my name is debbie and i have a son with charge also. His name is > >> regan. He > >> >has the facial palsy, pulmonary stenosis, deafness in his left ear and > >> learning > >> >disabled. He has a mild case i am told. He has had 4 or 5 sets of > tubes, > >> tonsils > >> >and adnoids out and ear surgery (for the cupshaped ear) he also had a > gold > >> >implant in left eyelid to make it close at night, but was unsuccessful > and > >> had to > >> >take it out and then also devoloped a cyst in it and and had to have it > >> removed > >> >also. we live in boring southeast missouri. good to hear from > everyone..... > >> > > >> >Michele Westmaas wrote: > >> > > >> >> > >> >> > >> >> - > >> >> Glad to have you guys aboard! My daughter is 16 mos old, so she's > >> >> following close behind Hunter. I envy you living in beautiful > Orlando! > >> >> We're in boring central IL... > >> >> > >> >> Michele > >> >> mom toAubrie (16 mos) CHaRgE and (7 yrs), wife to DJ, in IL > >> >> westml@... > >> >> > >> > >> ------------------------------------------------------------------------ > >> >> Has ONElist changed your life? > >> >> http://www.ONElist.com > >> >> Visit our homepage and share with us your experiences at ONElist of > the > >> Week! > >> > >> ------------------------------------------------------------------------ > >> >> 4th International CHARGE Syndrome Conference, Houston, Texas, July > >> >> 23-25, 1999. > >> >> For information about the CHARGE Syndrome Foundation or to become a > >> member > >> >> please contact marion@.... > >> > > >> > > >> > > >> > > >> >------------------------------------------------------------------------ > >> >Looking to expand your world? > >> >http://www.ONElist.com > >> >ONElist has over 115,000 e-mail communities from which to chose! > >> >------------------------------------------------------------------------ > >> >4th International CHARGE Syndrome Conference, Houston, Texas, July > >> >23-25, 1999. > >> >For information about the CHARGE Syndrome Foundation or to become a > member > >> please contact marion@.... > >> > > >> > >> ------------------------------------------------------------------------ > >> Looking to expand your world? > >> http://www.ONElist.com > >> ONElist has over 115,000 e-mail communities from which to chose! > >> ------------------------------------------------------------------------ > >> 4th International CHARGE Syndrome Conference, Houston, Texas, July > >> 23-25, 1999. > >> For information about the CHARGE Syndrome Foundation or to become a > member > >> please contact marion@.... > > > > > > > > > >------------------------------------------------------------------------ > >Did you know that ONElist hosts some of the largest lists on the Internet? > >http://www.ONElist.com > >Our scaleable system is the most reliable free e-mail service on the > Internet! > >------------------------------------------------------------------------ > >4th International CHARGE Syndrome Conference, Houston, Texas, July > >23-25, 1999. > >For information about the CHARGE Syndrome Foundation or to become a member > please contact marion@.... > > > > ------------------------------------------------------------------------ > Has ONElist changed your life? > http://www.ONElist.com > Visit our homepage and share with us your experiences at ONElist of the Week! > ------------------------------------------------------------------------ > 4th International CHARGE Syndrome Conference, Houston, Texas, July > 23-25, 1999. > For information about the CHARGE Syndrome Foundation or to become a member > please contact marion@.... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 1999 Report Share Posted April 17, 1999 Debbie, I can't believe it either!! Peyton is 2 & 1/2 and has had a pretty full life so far. He has had two open heart surgeries, TE fistula repair, re-implantation of his uretor(which didn't work-he still has Grade 5 Reflux-the worst level), a g-button placed, AV Fistula repair and his tonsils and adenoids removed. We have spent a LOT of time at Children's between these surgeries and other sickness(he was air vaced from Cape once when we almost lost him). His last open heart was just a little over 3 weeks ago. He's doing just great. He's at a 6-8 mo dev. level. He is an absolute joy. He gets home therapy from the Spot and other individuals. Next fall he will go to the Early Childhood program at Jefferson. At his IEP meeting, Ann Hogan mentioned there had been another child with CHARGE that they served, but he was ver ymild. I assumed that you were now out of the district from the way she spoke. Since you have always lived here. You may know my husband, Mike. He went to Central, he was the class of '86 and his brother , Pat " 83. He's out of town now so I havn't been able to tell him about this. Maybe we could get together some time. I'd love to meet Regan!! E-mail me if you would like to do that!! Corrie Young wife to Mike, mom to Peyton Re: swimming/buttons >> >> > >> > >> >hello. my name is debbie and i have a son with charge also. His name is >> regan. He >> >has the facial palsy, pulmonary stenosis, deafness in his left ear and >> learning >> >disabled. He has a mild case i am told. He has had 4 or 5 sets of tubes, >> tonsils >> >and adnoids out and ear surgery (for the cupshaped ear) he also had a gold >> >implant in left eyelid to make it close at night, but was unsuccessful and >> had to >> >take it out and then also devoloped a cyst in it and and had to have it >> removed >> >also. we live in boring southeast missouri. good to hear from everyone..... >> > >> >Michele Westmaas wrote: >> > >> >> >> >> >> >> - >> >> Glad to have you guys aboard! My daughter is 16 mos old, so she's >> >> following close behind Hunter. I envy you living in beautiful Orlando! >> >> We're in boring central IL... >> >> >> >> Michele >> >> mom toAubrie (16 mos) CHaRgE and (7 yrs), wife to DJ, in IL >> >> westml@... >> >> >> >> ------------------------------------------------------------------------ >> >> Has ONElist changed your life? >> >> http://www.ONElist.com >> >> Visit our homepage and share with us your experiences at ONElist of the >> Week! >> >> ------------------------------------------------------------------------ >> >> 4th International CHARGE Syndrome Conference, Houston, Texas, July >> >> 23-25, 1999. >> >> For information about the CHARGE Syndrome Foundation or to become a >> member >> >> please contact marion@.... >> > >> > >> > >> > >> >------------------------------------------------------------------------ >> >Looking to expand your world? >> >http://www.ONElist.com >> >ONElist has over 115,000 e-mail communities from which to chose! >> >------------------------------------------------------------------------ >> >4th International CHARGE Syndrome Conference, Houston, Texas, July >> >23-25, 1999. >> >For information about the CHARGE Syndrome Foundation or to become a member >> please contact marion@.... >> > >> >> ------------------------------------------------------------------------ >> Looking to expand your world? >> http://www.ONElist.com >> ONElist has over 115,000 e-mail communities from which to chose! >> ------------------------------------------------------------------------ >> 4th International CHARGE Syndrome Conference, Houston, Texas, July >> 23-25, 1999. >> For information about the CHARGE Syndrome Foundation or to become a member >> please contact marion@.... > > > > >------------------------------------------------------------------------ >Did you know that ONElist hosts some of the largest lists on the Internet? >http://www.ONElist.com >Our scaleable system is the most reliable free e-mail service on the Internet! >------------------------------------------------------------------------ >4th International CHARGE Syndrome Conference, Houston, Texas, July >23-25, 1999. >For information about the CHARGE Syndrome Foundation or to become a member please contact marion@.... > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 1999 Report Share Posted April 17, 1999 Corrie & Debbie- I'm green with envy that you 2 have found each other in the same town :-) I hope you're able to meet soon and find that you enjoy each other's company! Perhaps I'll meet one or both of you at Children's some day... Michele mom to Aubrie (16 mos) CHaRgE and (7 yrs), wife to DJ, in IL westml@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 1999 Report Share Posted April 17, 1999 Michele, We'll be up there on the 24th of May if something comes up with you all that you have to go there!!! I know you said that you didn't have anything coming up, but just in case... Congrats on the Lion's Club funding. We're still waiting to hear from our Regional Center on funding for us. If they do it, it will only be $500, but hey, some is better than none!! We got NO help for Boston(except from family-thank God). BTW, what town are you in in IL? My parents live in Nashville(30 miles west of Mt. Vernon). My dad's from central IL area(small farm towns) and my mom from the Chicago area(near Joliet)-I know you said your mom lived up there?? Just curios... Can you tell my husbands out of town?? Corrie Young wife to Mike, mom to Peyton Re: swimming/buttons > > >Corrie & Debbie- >I'm green with envy that you 2 have found each other in the same town >:-) > >I hope you're able to meet soon and find that you enjoy each other's >company! Perhaps I'll meet one or both of you at Children's some day... > >Michele >mom to Aubrie (16 mos) CHaRgE and (7 yrs), wife to DJ, in IL >westml@... > > >------------------------------------------------------------------------ >Did you know that knowledge is power? >http://www.ONElist.com >Join a new ONElist e-mail community and strengthen your mind! >------------------------------------------------------------------------ >4th International CHARGE Syndrome Conference, Houston, Texas, July >23-25, 1999. >For information about the CHARGE Syndrome Foundation or to become a member please contact marion@.... > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 1999 Report Share Posted April 17, 1999 In a message dated 99-04-16 23:38:03 EDT, you write: << We got NO help for Boston(except from family-thank God). >> Corrie, AMEN to thank God for family....My birthday is May 25 and all I asked for was money for Houston, so I'll let y'all know how that pans out also!!! I also need new clothes for Houston. I still carry 20 lbs I am blaming on Jillian which isn't her fault, heck she's over a year old now!!! Foley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 1999 Report Share Posted April 17, 1999 > I still carry 20 lbs I am blaming on > Jillian which isn't her fault, heck she's over a year old now!!! > > Foley tis Ok .. I still blame my extra on and he's 7.. LOL Casey charge@... minnow@... Mom to Dawn 20, Ken 9 ADHD, and 7 CHARGE. Cobb California ICQ UIN# 728514 AIM Buddy List: ZeeCasey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 1999 Report Share Posted April 18, 1999 I still blame some of mine on and he's almost 10!!!!! Mom to Kennedy 14 mos old CHARGEr, 9, 8, and wife to Graeme New Brunswick, Canada Visit the " Weir's homepage " at: http://www.geocities.com/SunsetStrip/Palms/5716 ICQ #1426476 > I still carry 20 lbs I am blaming on > Jillian which isn't her fault, heck she's over a year old now!!! > > Foley tis Ok .. I still blame my extra on and he's 7.. LOL Casey charge@... minnow@... Mom to Dawn 20, Ken 9 ADHD, and 7 CHARGE. Cobb California ICQ UIN# 728514 AIM Buddy List: ZeeCasey ------------------------------------------------------------------------ Has ONElist changed your life? http://www.ONElist.com Visit our homepage and share with us your experiences at ONElist of the Week! ------------------------------------------------------------------------ 4th International CHARGE Syndrome Conference, Houston, Texas, July 23-25, 1999. For information about the CHARGE Syndrome Foundation or to become a member please contact marion@.... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 1999 Report Share Posted April 29, 1999 Hey , I know it has been quite a while. I couldn't quite figure out how to get on this list. I would try and fail and then before I knew it a month or two would go by and I'd try again. Anyhow, I figured it out and it's wonderful! I hope Jillian is doing well. The pictures you sent were adorable. I'd love to receive more and I'll send you updated photos of Hunter if you'd like. I'm not sure if we're going to the conference. I KNOW we'd love to go but we'll have to see. Take Care, Doran Mom to Hunter(14 mo) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 1999 Report Share Posted April 29, 1999 Kennedy's Mom, Hunter is approximately 191/2 lbs. Which is pretty light for his age. However, when people see him they always say he's a big/healthy looking boy. I think it's just because he's kind of stocky looking - short legs though. How/what all is Kennedy doing? Love to hear from you. Doran Hunter's Mom (14mo.) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 1999 Report Share Posted April 30, 1999 , I get the same comments about Kennedy, she is 21 lbs and 28 and a half inches long. So, she's pretty stocky. Most people that have heard about her, and are meeting her for the first time can't believe how " healthy " she looks. Kennedy is at about 6 -7 months gross motor skills, she just started sitting up about 3 and a half weeks ago and just started getting up onto her knees yesterday. Developmentally, she is at 11-12 months <we just had her first assessment from a psychologist last week>. She has 2 digital hearing aids, which bring her moderate to severe hearing loss up VERY close to normal. We usually get about 4-6 hours a day with the aids on. She has glasses <not crazy about them though>, for far sightedness, and we patch her left eye <her good one> for 3 hrs a day to make the other one stronger. She is fed via a g tube button with Vivonex formula and watered down baby food 3 times a day and an overnight continuous feed. She babbles mom mom, dada, nana, baba, ah ah, and some other stuff. I can't think of too much else <though I'm sure there is>, if you have any other questions, let me know! Mom to Kennedy 14 mos old CHARGEr, 9, 8, and wife to Graeme New Brunswick, Canada Visit the " Weir's homepage " at: http://www.geocities.com/SunsetStrip/Palms/5716 ICQ #1426476 >From: JLHDORAN@... > >Kennedy's Mom, > Hunter is approximately 191/2 lbs. Which is pretty light for his >age. However, when people see him they always say he's a big/healthy looking >boy. I think it's just because he's kind of stocky looking - short legs >though. How/what all is Kennedy doing? Love to hear from you. > > Doran > > Hunter's Mom (14mo.) > >------------------------------------------------------------------------ >Did you know that ONElist now offers the richest set of >group communications tools on the Internet? >http://www.onelist.com >Check out our homepage for details on these new tools! >------------------------------------------------------------------------ >4th International CHARGE Syndrome Conference, Houston, Texas, July >23-25, 1999. >For information about the CHARGE Syndrome Foundation or to become a member please contact marion@.... > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 1999 Report Share Posted May 1, 1999 , It was great hearing from you. Kennedy sounds like she is doing quite well also. I'm thrilled to hear it. Hunter also has glasses (one eye is far sighted +5 1/2 and the other eye is near sighted - approx. 20/80 or so). We REALLY need to be patching Hunter, but he rips the patch right off of his eye as soon as we put it on. And if I try and distract him he just crys big tears. How do you do it? Can't wait to hear Doran Mom to Hunter(14 mo. CHARGEr) Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.