Guest guest Posted August 21, 2004 Report Share Posted August 21, 2004 Hi Cheri, This is Bo . My wife, , and I have a two year-old charger () who started to walk a few months ago. We had a CT scan done on his ears and there were multiple deformities. Mostly they basically didn't develop fully. He has pretty bad balance but is very tough and walks from object to object. He crawled pretty late and cruised for a LONG time. Now he practices and can go quite a ways w/o grabbing onto anything. He had a TEF and was in the NICU for 9 weeks. He has bilateral coloboma and palsy on his left side. His left eye is about half the size of the right and hardly functions but his acute vision is really good. His motor skills are behind due to the walking thing but his other skills are right on track and several are pretty far ahead for his age. He signs a lot of words and probably has more than 100 verbal words. He counts to 6 and knows the whole alphabet. He is a smart little dude. We are thankful for that. He still crawls at least half the time and gets around alright. He's very sensitive to light and wears a hat when he's in the sun. We had his g-tube taken out about 6 months ago and he just reached the bottom of the chart for his size. He eats most everything now and loves peas the most. I read most of the CHARGE posts but if you have any specific questions feel free to email me at bo@... or at wendy@.... Bo _____ From: Holweger Sent: Friday, August 20, 2004 8:00 PM To: CHARGE Subject: Re: charge child Hi Cheri, My name is and my four year old son Cameron has CHARGE. I'm in Pflugerville. I don't know if you've heard of it but it's north Austin about 2 hours from Waco. That's awesome that Ethan is already cruising!!!!!!!!!!!! Cameron has not mastered walking yet and he didn't crawl until he was almost 2 years old. But he can move now --- he's very fast and will plow over anything in his way. I would love to stay in touch with you since we live sooooo close!!!!!!!!!!!!!! cwalton80 wrote: 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@... 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@... 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@.... Thank you! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2004 Report Share Posted August 21, 2004 Cheri & - Wow! Waco and Pflugerville! Y'all are so close to me here in Cedar Park (just northwest of Austin .. the other side of Round Rock from Pflugerville). Our daughter also had Patent Ductus Arteriosus as well as three other heart defects and died a few hours after her heart surgery at 13 days of age. Which hospitals did y'all go to? Sara was at Children's in Austin. Hugs, Debbie From the keyboard of Holweger: > Hi Cheri, > > My name is and my four year old son Cameron has CHARGE. I'm in Pflugerville. I don't know if you've heard of it but it's north Austin about 2 hours from Waco. That's awesome that Ethan is already cruising!!!!!!!!!!!! Cameron has not mastered walking yet and he didn't crawl until he was almost 2 years old. But he can move now --- he's very fast and will plow over anything in his way. I would love to stay in touch with you since we live sooooo close!!!!!!!!!!!!!! > > > > cwalton80 wrote: > 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@... > > Thanks, > Cheri Walton > Waco,Texas -- + Debbie Tropiano -- debbie@... -- http://www.icus.com/personal.html + | Mommy to b: 8/17/1995, ^Sara^ b: 10/25/2000 d: 11/7/2000 & | | Leah b: 10/17/2001 a: 9/26/2002 " God shows His opposition to cancer and | | birth defects, not by eliminating them or making them happen only to bad | | people (He can't do that), but by summoning forth friends and neighbors | + to ease the burden and to fill the emptiness. " -- Harold S. Kushner + Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2004 Report Share Posted August 21, 2004 Cheri & - Wow! Waco and Pflugerville! Y'all are so close to me here in Cedar Park (just northwest of Austin .. the other side of Round Rock from Pflugerville). Our daughter also had Patent Ductus Arteriosus as well as three other heart defects and died a few hours after her heart surgery at 13 days of age. Which hospitals did y'all go to? Sara was at Children's in Austin. Hugs, Debbie From the keyboard of Holweger: > Hi Cheri, > > My name is and my four year old son Cameron has CHARGE. I'm in Pflugerville. I don't know if you've heard of it but it's north Austin about 2 hours from Waco. That's awesome that Ethan is already cruising!!!!!!!!!!!! Cameron has not mastered walking yet and he didn't crawl until he was almost 2 years old. But he can move now --- he's very fast and will plow over anything in his way. I would love to stay in touch with you since we live sooooo close!!!!!!!!!!!!!! > > > > cwalton80 wrote: > 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@... > > Thanks, > Cheri Walton > Waco,Texas -- + Debbie Tropiano -- debbie@... -- http://www.icus.com/personal.html + | Mommy to b: 8/17/1995, ^Sara^ b: 10/25/2000 d: 11/7/2000 & | | Leah b: 10/17/2001 a: 9/26/2002 " God shows His opposition to cancer and | | birth defects, not by eliminating them or making them happen only to bad | | people (He can't do that), but by summoning forth friends and neighbors | + to ease the burden and to fill the emptiness. " -- Harold S. Kushner + Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2004 Report Share Posted August 21, 2004 welcome to teh group Cheri..im a 21 year old CHARGE-er..this is agreat group..im palnning to go to the conference next year (im from australia0 the austraian ones have been great Belinda RE: charge child > Hi Cheri, > You will be welcomed royally to this wonderful group and people will offer such amazing bits and chunks of information. So, other than to say, " Welcome " , I will only add here, " YES, Go to the CHARGE conference. IT is a wonderful, amazing, eye opening, tremendous experience for all of us ( I am not a parent). > > pam > > > Quote Link to comment Share on other sites More sharing options...
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