Guest guest Posted August 24, 2004 Report Share Posted August 24, 2004 We saw Pfaff last Friday and he is probably the best Cooks has to offer. We too have a November appt. Maybe late Oct. Pfaff has been with us from the very start. He hooked us up with Dr.Palmer (ENT) and has a good repoire with Dr.Packwood our opthamologist. They all operated on Garland back in May. Pfaff keeps track of Garland almost as good as our pediatrician does. has given Cooks an education over the past 2 years and I am sure they have a new outlook on CHARGE. The house geneticist refused to diagnose Garland with CHARGE. We had to go to Dallas Childrens for the official diagnoses. I could write a book on Cooks, but not here. Let us know when you are going to be here, for there is a great place not far from the hospital to have lunch or dinner. Also if there is anything you need from up here let us know and we will try in help. As far as the crawling, walking and cruising part he is on the same time line that Garland was on. Get him a walker and he will probably take off in no time. Randy, s husband and Garlands Poppy > > Hi, > > > > I have a 2 year old son named Ethan. He was diagnosed with CHARGE > at > > the age of 10 months. Ethan has developmental colobomas of the iris > > in both eyes and micronystagmus as well. He was born with TEF > (stomach > > not connected to esophagus)and had surgery to repair it at one day > > old. He spent 14 days in the NICU. He was also born with Patent > > Ductus Arteriosus(valve in heart that is supposed to shut off at > > birth),which was repaired just this May. He also has slight palsy > to > > the left side of his face.He seems to be on track growth wise other > > than his gross motor skills. He is attending physical therapy twice > a > > week to work on that. He did not crawl until 12mths. At 15 mths he > > began to pull up, and now at 2, he is just starting to cruise along > > furniture. So hopefully the walking will come along soon! > > > > I am interested in communicating with other CHARGE parents. I would > > like to get advice and helpful information. Ethan is receiving many > > sevices through his local deaf/blind program and ECI. We are > > considering going to the CHARGE conference in the summer 2005. Has > > anyone been to a CHARGE conference? > > > > My email is:cwalton80@y... > > > > Thanks, > > Cheri Walton > > Waco,Texas > > > > 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@c... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > 7th International > CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information will be available at our website > www.chargesyndrome.org or by calling 1-. In Canada, you may contact CHARGE Syndrome Canada at 1- (families), visit www.chargesyndrome.ca, or email info@c... Thank you! > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2004 Report Share Posted August 24, 2004 We saw Pfaff last Friday and he is probably the best Cooks has to offer. We too have a November appt. Maybe late Oct. Pfaff has been with us from the very start. He hooked us up with Dr.Palmer (ENT) and has a good repoire with Dr.Packwood our opthamologist. They all operated on Garland back in May. Pfaff keeps track of Garland almost as good as our pediatrician does. has given Cooks an education over the past 2 years and I am sure they have a new outlook on CHARGE. The house geneticist refused to diagnose Garland with CHARGE. We had to go to Dallas Childrens for the official diagnoses. I could write a book on Cooks, but not here. Let us know when you are going to be here, for there is a great place not far from the hospital to have lunch or dinner. Also if there is anything you need from up here let us know and we will try in help. As far as the crawling, walking and cruising part he is on the same time line that Garland was on. Get him a walker and he will probably take off in no time. Randy, s husband and Garlands Poppy > > Hi, > > > > I have a 2 year old son named Ethan. He was diagnosed with CHARGE > at > > the age of 10 months. Ethan has developmental colobomas of the iris > > in both eyes and micronystagmus as well. He was born with TEF > (stomach > > not connected to esophagus)and had surgery to repair it at one day > > old. He spent 14 days in the NICU. He was also born with Patent > > Ductus Arteriosus(valve in heart that is supposed to shut off at > > birth),which was repaired just this May. He also has slight palsy > to > > the left side of his face.He seems to be on track growth wise other > > than his gross motor skills. He is attending physical therapy twice > a > > week to work on that. He did not crawl until 12mths. At 15 mths he > > began to pull up, and now at 2, he is just starting to cruise along > > furniture. So hopefully the walking will come along soon! > > > > I am interested in communicating with other CHARGE parents. I would > > like to get advice and helpful information. Ethan is receiving many > > sevices through his local deaf/blind program and ECI. We are > > considering going to the CHARGE conference in the summer 2005. Has > > anyone been to a CHARGE conference? > > > > My email is:cwalton80@y... > > > > Thanks, > > Cheri Walton > > Waco,Texas > > > > 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@c... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > 7th International > CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information will be available at our website > www.chargesyndrome.org or by calling 1-. In Canada, you may contact CHARGE Syndrome Canada at 1- (families), visit www.chargesyndrome.ca, or email info@c... Thank you! > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2004 Report Share Posted August 24, 2004 Randy, I agree about Dr. Pfaff. He is a great doctor. Ethan's ophthalmologist is Dr. Antinone over on St and his ENT was Dr Owens in Dallas but since we moved to Waco we have Dr. West. The geneticist that saw Ethan was from Cooks Dr. Kukolich, she did good about diagnosing Ethan. We go to see her on Wednesday, She comes to Waco different times of the month, so I figured why drive! I too could write a book about Cooks. It seems like we lived there the first year of Ethan's life. Ethan has a gait trainer, he received it about two months ago. He started out having to use all of the supports, but now he has enough strength to push it . Anyways, Ethan's next appointment with Dr. Pfaff is on October the 12th. I thought it was in November, I might have to call and check, but I put October on the calender. I forgot which one, Oh Well! It does not surprise me. Can't wait to meet y'all!!!! Talk to ya soon! Cheri Goodwin wrote: We saw Pfaff last Friday and he is probably the best Cooks has to offer. We too have a November appt. Maybe late Oct. Pfaff has been with us from the very start. He hooked us up with Dr.Palmer (ENT) and has a good repoire with Dr.Packwood our opthamologist. They all operated on Garland back in May. Pfaff keeps track of Garland almost as good as our pediatrician does. has given Cooks an education over the past 2 years and I am sure they have a new outlook on CHARGE. The house geneticist refused to diagnose Garland with CHARGE. We had to go to Dallas Childrens for the official diagnoses. I could write a book on Cooks, but not here. Let us know when you are going to be here, for there is a great place not far from the hospital to have lunch or dinner. Also if there is anything you need from up here let us know and we will try in help. As far as the crawling, walking and cruising part he is on the same time line that Garland was on. Get him a walker and he will probably take off in no time. Randy, s husband and Garlands Poppy > > Hi, > > > > I have a 2 year old son named Ethan. He was diagnosed with CHARGE > at > > the age of 10 months. Ethan has developmental colobomas of the iris > > in both eyes and micronystagmus as well. He was born with TEF > (stomach > > not connected to esophagus)and had surgery to repair it at one day > > old. He spent 14 days in the NICU. He was also born with Patent > > Ductus Arteriosus(valve in heart that is supposed to shut off at > > birth),which was repaired just this May. He also has slight palsy > to > > the left side of his face.He seems to be on track growth wise other > > than his gross motor skills. He is attending physical therapy twice > a > > week to work on that. He did not crawl until 12mths. At 15 mths he > > began to pull up, and now at 2, he is just starting to cruise along > > furniture. So hopefully the walking will come along soon! > > > > I am interested in communicating with other CHARGE parents. I would > > like to get advice and helpful information. Ethan is receiving many > > sevices through his local deaf/blind program and ECI. We are > > considering going to the CHARGE conference in the summer 2005. Has > > anyone been to a CHARGE conference? > > > > My email is:cwalton80@y... > > > > Thanks, > > Cheri Walton > > Waco,Texas > > > > 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@c... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > 7th International > CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information will be available at our website > www.chargesyndrome.org or by calling 1-. In Canada, you may contact CHARGE Syndrome Canada at 1- (families), visit www.chargesyndrome.ca, or email info@c... Thank you! > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2004 Report Share Posted August 24, 2004 Randy, I agree about Dr. Pfaff. He is a great doctor. Ethan's ophthalmologist is Dr. Antinone over on St and his ENT was Dr Owens in Dallas but since we moved to Waco we have Dr. West. The geneticist that saw Ethan was from Cooks Dr. Kukolich, she did good about diagnosing Ethan. We go to see her on Wednesday, She comes to Waco different times of the month, so I figured why drive! I too could write a book about Cooks. It seems like we lived there the first year of Ethan's life. Ethan has a gait trainer, he received it about two months ago. He started out having to use all of the supports, but now he has enough strength to push it . Anyways, Ethan's next appointment with Dr. Pfaff is on October the 12th. I thought it was in November, I might have to call and check, but I put October on the calender. I forgot which one, Oh Well! It does not surprise me. Can't wait to meet y'all!!!! Talk to ya soon! Cheri Goodwin wrote: We saw Pfaff last Friday and he is probably the best Cooks has to offer. We too have a November appt. Maybe late Oct. Pfaff has been with us from the very start. He hooked us up with Dr.Palmer (ENT) and has a good repoire with Dr.Packwood our opthamologist. They all operated on Garland back in May. Pfaff keeps track of Garland almost as good as our pediatrician does. has given Cooks an education over the past 2 years and I am sure they have a new outlook on CHARGE. The house geneticist refused to diagnose Garland with CHARGE. We had to go to Dallas Childrens for the official diagnoses. I could write a book on Cooks, but not here. Let us know when you are going to be here, for there is a great place not far from the hospital to have lunch or dinner. Also if there is anything you need from up here let us know and we will try in help. As far as the crawling, walking and cruising part he is on the same time line that Garland was on. Get him a walker and he will probably take off in no time. Randy, s husband and Garlands Poppy > > Hi, > > > > I have a 2 year old son named Ethan. He was diagnosed with CHARGE > at > > the age of 10 months. Ethan has developmental colobomas of the iris > > in both eyes and micronystagmus as well. He was born with TEF > (stomach > > not connected to esophagus)and had surgery to repair it at one day > > old. He spent 14 days in the NICU. He was also born with Patent > > Ductus Arteriosus(valve in heart that is supposed to shut off at > > birth),which was repaired just this May. He also has slight palsy > to > > the left side of his face.He seems to be on track growth wise other > > than his gross motor skills. He is attending physical therapy twice > a > > week to work on that. He did not crawl until 12mths. At 15 mths he > > began to pull up, and now at 2, he is just starting to cruise along > > furniture. So hopefully the walking will come along soon! > > > > I am interested in communicating with other CHARGE parents. I would > > like to get advice and helpful information. Ethan is receiving many > > sevices through his local deaf/blind program and ECI. We are > > considering going to the CHARGE conference in the summer 2005. Has > > anyone been to a CHARGE conference? > > > > My email is:cwalton80@y... > > > > Thanks, > > Cheri Walton > > Waco,Texas > > > > 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@c... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > 7th International > CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information will be available at our website > www.chargesyndrome.org or by calling 1-. In Canada, you may contact CHARGE Syndrome Canada at 1- (families), visit www.chargesyndrome.ca, or email info@c... Thank you! > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2004 Report Share Posted August 24, 2004 Cheri, if you would like to email us off line its Bambarn@... I am sure would like to chat with you. Kukolich was in CHARGE denial and Antinone told Garland was blind and pratically tossed her out of the office. He would not explain nor educate us on coloboma. He basically gave us a drive by and took our co-pay. I made a million phone calls to doctors here in North Texas and they all said Packwood was the best with kids. It took a while to get our first appt, but we have been very pleased with him. Maybe it was a bad day on all parts at Antinones. Who knows. Randy -- In CHARGE , cheri walton <cwalton80@y...> wrote: > Randy, > > I agree about Dr. Pfaff. He is a great doctor. Ethan's ophthalmologist is Dr. Antinone over on St and his ENT was Dr Owens in Dallas but since we moved to Waco we have Dr. West. The geneticist that saw Ethan was from Cooks Dr. Kukolich, she did good about diagnosing Ethan. We go to see her on Wednesday, She comes to Waco different times of the month, so I figured why drive! I too could write a book about Cooks. It seems like we lived there the first year of Ethan's life. > Ethan has a gait trainer, he received it about two months ago. He started out having to use all of the supports, but now he has enough strength to push it . Anyways, Ethan's next appointment with Dr. Pfaff is on October the 12th. I thought it was in November, I might have to call and check, but I put October on the calender. I forgot which one, Oh Well! It does not surprise me. > Can't wait to meet y'all!!!! > > Talk to ya soon! > Cheri > Goodwin <michelledg33@y...> wrote: > We saw Pfaff last Friday and he is probably the best Cooks has to > offer. We too have a November appt. Maybe late Oct. Pfaff has been > with us from the very start. He hooked us up with Dr.Palmer (ENT) > and has a good repoire with Dr.Packwood our opthamologist. They all > operated on Garland back in May. Pfaff keeps track of Garland almost > as good as our pediatrician does. has given Cooks an > education over the past 2 years and I am sure they have a new outlook > on CHARGE. The house geneticist refused to diagnose Garland with > CHARGE. We had to go to Dallas Childrens for the official > diagnoses. I could write a book on Cooks, but not here. Let us know > when you are going to be here, for there is a great place not far > from the hospital to have lunch or dinner. Also if there is anything > you need from up here let us know and we will try in help. As far as > the crawling, walking and cruising part he is on the same time line > that Garland was on. Get him a walker and he will probably take off > in no time. > > Randy, s husband and Garlands Poppy > > > > > > Hi, > > > > > > I have a 2 year old son named Ethan. He was diagnosed with CHARGE > > at > > > the age of 10 months. Ethan has developmental colobomas of the > iris > > > in both eyes and micronystagmus as well. He was born with TEF > > (stomach > > > not connected to esophagus)and had surgery to repair it at one > day > > > old. He spent 14 days in the NICU. He was also born with Patent > > > Ductus Arteriosus(valve in heart that is supposed to shut off at > > > birth),which was repaired just this May. He also has slight palsy > > to > > > the left side of his face.He seems to be on track growth wise > other > > > than his gross motor skills. He is attending physical therapy > twice > > a > > > week to work on that. He did not crawl until 12mths. At 15 mths > he > > > began to pull up, and now at 2, he is just starting to cruise > along > > > furniture. So hopefully the walking will come along soon! > > > > > > I am interested in communicating with other CHARGE parents. I > would > > > like to get advice and helpful information. Ethan is receiving > many > > > sevices through his local deaf/blind program and ECI. We are > > > considering going to the CHARGE conference in the summer 2005. > Has > > > anyone been to a CHARGE conference? > > > > > > My email is:cwalton80@y... > > > > > > Thanks, > > > Cheri Walton > > > Waco,Texas > > > > > > > > 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@c... or visit > > the CHARGE Syndrome Foundation web page > > at http://www.chargesyndrome.org > > 7th International > > CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. > Information will be available at our website > > www.chargesyndrome.org or by calling 1-. In Canada, > you may contact CHARGE Syndrome Canada at 1- (families), > visit www.chargesyndrome.ca, or email info@c... Thank you! > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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