Guest guest Posted January 17, 2005 Report Share Posted January 17, 2005 THANK YOU GARY FOR THE INFORMATION AND THE SITE IS REALLY GOOD. I HOPE THAT YOUR HAVING A GOOD DAY PAMjerkam12 wrote: this web site has huge amounts of info on R S Dwith a practice in Vero Beachhttp://www.rsdrx.com/Hooshang Hooshmand, M.D. practices intractable Neurology in Vero Beach, Florida: Good Luck W.> Pam, I don't know his name but there is a doctor that is doing some experimental treatments in Florida. I will see if I can find out his name. Also, my PT told me when my foot turns in I need more neurontin to counteract it. That usually happens when the pain is most severe. My toes also start curling under and I know that is a warning sign of what is about to happen. Make sure you keep that cane nearby b/c you can fall. I will try to get that info for you asap. Have a good day.> Love you,> Debbie (Louisiana)> > > > From: Pamela Fredette <patches13033@y...>> > Date: 2005/01/10 Mon AM 07:39:58 EST> > To: rsd-crpsofamerica > > Subject: information> > > > HELLO EVERY ONE WELL I HAVE A QUESTION>>> DOES ANY ONE KNOW OF A GOOD DOCTOR IN FLORIDA..I WAS TOLD BY A FAMILY FRIEND THAT THERE IS A GOOD ONE DOWN THERE. I WAS JUST COURIOUS... I'M GOING DOWN TO FLORIDA FOR A LITTLE SUNSHINE AT THE END OF JANUARY AND HOPING TO GET SOME HEAT INTO THESE COLD BONES..ALL WE HAVE HAD IS SNOW FREEZING RAIN THEN MORE SNOW..AT LEAST ITS NOT AS BAD AS LAST YEAR...ALSO DOES ANY ONE KNOW IF RSD CAN EFFECT YOUR SINUS BECAUSE I HAVE THE BURNING PAIN ON MY FACE AND SCALP BUT NOW I HAVE BEEN GETTING IT ON THE INSIDE OF MY NOSE..JUST THOUGHT THAT I WOULD ASK...I HOPE THAT EVERYONE IS DOING AS GOOD AS CAN BE EXPECTED... I HAVE AN APPOINTMENT WITH THE TEACHING HOSPITAL ON THE 26 OF JANUARY TO SEE WHAT THEY CAN DO FOR MY RIGHT FOOT ..IT WANTS TO TURN IN WHEN THE PAIN GETS BAD ...WALKING ANY LONG DISTANCE GETS ME LIMPING EVEN WITH MY CANE....WELL SOFT HUGS TO YOU ALL PAM> > > > __________________________________________________> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2007 Report Share Posted May 10, 2007 We had our first child, a beautiful baby boy, Logan, in November last year. He was diagnosed with CHARGE. He underwent several surgeries and was doing really good. At the beginning of December he developed pneumonia and also Necrotizing Enterocolitis (NEC). NEC is an infection in the intestines. The surgeons tried to go in to repair his intestines but the infection had already destroyed all of his intestines. Sadly, passed away on December 5, 2006. Even though we only had him in this world for 33 days, he new he was loved. He was and still is our angel. We were preparing for the road ahead for our family and researching CHARGE and all that we needed to be prepared for. We lost him before we could even bring him home from the hospital. I would give anything to have him back with us. I have told many people that I never realized how many children were born with genetic conditions. I have so much respect for all parents and the children that have these conditions. These children are all the same as any other child without CHARGE. They all need love and I cannot tell you how great all of you are. So many emotions run through my head about what life would be like now. I would so love to just hug and kiss our little everyday. We are now trying to get as much information as we can to plan for our second child. We will be going to genetic counseling through Baylor College of Medicine after our visit to my OB. I am very scared and excited at the same time. Can anyone tell me about their experience with their second pregnancy? What were you faced with? Did anyone say hurtful things to you? How did you handle the pregancy? Statistically, I know the risk is only 1-2% if you do not have the CHARGE gene and I am sure that my doctor and the genetic specialists will fill me in on the medical information but I want to also know about the emotional side. Any information would be greatly appreciated. Thanks, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2007 Report Share Posted May 10, 2007 , Welcome to the listserv. Kennedy was our last child, so I don't have any experience with another pregnancy after having had a child with CHARGE, but I want to wish you the best of luck with the pregnancy. If you have a picture of your sweet you'd like me to add to the CHARGE picture page (http://www.imagestation.com/album/?id=2117043995), just email it to me and I'll put him up. Kennedy's Mom www.chargesyndrome.info > > We had our first child, a beautiful baby boy, Logan, in > November last year. He was diagnosed with CHARGE. He underwent > several surgeries and was doing really good. At the beginning of > December he developed pneumonia and also Necrotizing Enterocolitis > (NEC). NEC is an infection in the intestines. The surgeons tried > to go in to repair his intestines but the infection had already > destroyed all of his intestines. > > Sadly, passed away on December 5, 2006. Even though we only > had him in this world for 33 days, he new he was loved. He was and > still is our angel. We were preparing for the road ahead for our > family and researching CHARGE and all that we needed to be prepared > for. We lost him before we could even bring him home from the > hospital. I would give anything to have him back with us. > > I have told many people that I never realized how many children were > born with genetic conditions. I have so much respect for all > parents and the children that have these conditions. These children > are all the same as any other child without CHARGE. They all need > love and I cannot tell you how great all of you are. > > So many emotions run through my head about what life would be like > now. I would so love to just hug and kiss our little everyday. > > We are now trying to get as much information as we can to plan for > our second child. We will be going to genetic counseling through > Baylor College of Medicine after our visit to my OB. > > I am very scared and excited at the same time. Can anyone tell me > about their experience with their second pregnancy? What were you > faced with? Did anyone say hurtful things to you? How did you > handle the pregancy? > > Statistically, I know the risk is only 1-2% if you do not have the > CHARGE gene and I am sure that my doctor and the genetic specialists > will fill me in on the medical information but I want to also know > about the emotional side. > > Any information would be greatly appreciated. > > Thanks, > > > > -- " It is far better to grasp the universe as it really is than to persist in delusion, however satisfying and reassuring. " --Carl Sagan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2007 Report Share Posted May 10, 2007 wendy im sure uve done ur best to read on all this but i will ask you a couple of questions ok do you know we on this list serve have a genitic councelour called meg who is the guru of all charge matters we all in here turn to meg for any question relating to genitics and as you may or not no the gene was recently found theres allways new sutff coming out i am a charger 21 and i cant believe the stuff my fam didnt no when i was born when i was a baby there wasnt a gene mutation found anywhere any chargers that were adults when i was little didnt even know they had charge theres a couple of them on this list and there r a few on here that have a couple of kinds with charge corrie where r u im indicating u hedre:) oh there r so many things but with corrie and her kids im not sure that eather of them had the genes not all of them do all i know is that if its a negative gene and the kid looks like charge it is charge everyone of us on here kids parents profesionals try to understand our bit of charge best we ca and try help others but sometimes its so difficult to comprahend if you want to c the site of the charger that i know of with the charge broter http://www.caringbridge.org/cb/inputSiteName.do?method=search&siteName=tateyoung and corrie has a thing there u can email her with questions to hope this helps hugs ellen charger in aus colabomas hearing reflux growth probs > > , > Welcome to the listserv. Kennedy was our last child, so I don't have any > experience with another pregnancy after having had a child with CHARGE, > but > I want to wish you the best of luck with the pregnancy. If you have a > picture of your sweet you'd like me to add to the CHARGE picture > page > (http://www.imagestation.com/album/?id=2117043995), just email it to me > and > I'll put him up. > > > Kennedy's Mom > www.chargesyndrome.info > > On 5/10/07, wgshultz wshultz@... > > wrote: > > > > We had our first child, a beautiful baby boy, Logan, in > > November last year. He was diagnosed with CHARGE. He underwent > > several surgeries and was doing really good. At the beginning of > > December he developed pneumonia and also Necrotizing Enterocolitis > > (NEC). NEC is an infection in the intestines. The surgeons tried > > to go in to repair his intestines but the infection had already > > destroyed all of his intestines. > > > > Sadly, passed away on December 5, 2006. Even though we only > > had him in this world for 33 days, he new he was loved. He was and > > still is our angel. We were preparing for the road ahead for our > > family and researching CHARGE and all that we needed to be prepared > > for. We lost him before we could even bring him home from the > > hospital. I would give anything to have him back with us. > > > > I have told many people that I never realized how many children were > > born with genetic conditions. I have so much respect for all > > parents and the children that have these conditions. These children > > are all the same as any other child without CHARGE. They all need > > love and I cannot tell you how great all of you are. > > > > So many emotions run through my head about what life would be like > > now. I would so love to just hug and kiss our little everyday. > > > > We are now trying to get as much information as we can to plan for > > our second child. We will be going to genetic counseling through > > Baylor College of Medicine after our visit to my OB. > > > > I am very scared and excited at the same time. Can anyone tell me > > about their experience with their second pregnancy? What were you > > faced with? Did anyone say hurtful things to you? How did you > > handle the pregancy? > > > > Statistically, I know the risk is only 1-2% if you do not have the > > CHARGE gene and I am sure that my doctor and the genetic specialists > > will fill me in on the medical information but I want to also know > > about the emotional side. > > > > Any information would be greatly appreciated. > > > > Thanks, > > > > > > > > > > -- > " It is far better to grasp the universe as it really is than to persist in > delusion, however satisfying and reassuring. " --Carl Sagan > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2007 Report Share Posted May 10, 2007 and if u click on the journal there u can view their hole history > > wendy im sure uve done ur best to read on all this but i will ask you a > couple of questions ok do you know we on this list serve have a genitic > councelour called meg who is the guru of all charge matters we all in here > turn to meg for any question relating to genitics and as you may or not no > the gene was recently found theres allways new sutff coming out i am a > charger 21 and i cant believe the stuff my fam didnt no when i was born when > i was a baby there wasnt a gene mutation found anywhere any chargers that > were adults when i was little didnt even know they had charge theres a > couple of them on this list and there r a few on here that have a couple of > kinds with charge corrie where r u im indicating u hedre:) oh there r so > many things but with corrie and her kids im not sure that eather of them had > the genes not all of them do all i know is that if its a negative gene and > the kid looks like charge it is charge everyone of us on here kids parents > profesionals try to understand our bit of charge best we ca and try help > others but sometimes its so difficult to comprahend if you want to c the > site of the charger that i know of with the charge broter > > http://www.caringbridge.org/cb/inputSiteName.do?method=search&siteName=tateyoung > and corrie has a thing there u can email her with questions to hope this > helps hugs ellen charger in aus colabomas hearing reflux growth probs > > > > > , > > Welcome to the listserv. Kennedy was our last child, so I don't have any > > experience with another pregnancy after having had a child with CHARGE, > > but > > I want to wish you the best of luck with the pregnancy. If you have a > > picture of your sweet you'd like me to add to the CHARGE picture > > page > > (http://www.imagestation.com/album/?id=2117043995 ), just email it to me > > and > > I'll put him up. > > > > > > Kennedy's Mom > > www.chargesyndrome.info > > > > On 5/10/07, wgshultz wshultz@... > > > wrote: > > > > > > We had our first child, a beautiful baby boy, Logan, in > > > November last year. He was diagnosed with CHARGE. He underwent > > > several surgeries and was doing really good. At the beginning of > > > December he developed pneumonia and also Necrotizing Enterocolitis > > > (NEC). NEC is an infection in the intestines. The surgeons tried > > > to go in to repair his intestines but the infection had already > > > destroyed all of his intestines. > > > > > > Sadly, passed away on December 5, 2006. Even though we only > > > had him in this world for 33 days, he new he was loved. He was and > > > still is our angel. We were preparing for the road ahead for our > > > family and researching CHARGE and all that we needed to be prepared > > > for. We lost him before we could even bring him home from the > > > hospital. I would give anything to have him back with us. > > > > > > I have told many people that I never realized how many children were > > > born with genetic conditions. I have so much respect for all > > > parents and the children that have these conditions. These children > > > are all the same as any other child without CHARGE. They all need > > > love and I cannot tell you how great all of you are. > > > > > > So many emotions run through my head about what life would be like > > > now. I would so love to just hug and kiss our little everyday. > > > > > > We are now trying to get as much information as we can to plan for > > > our second child. We will be going to genetic counseling through > > > Baylor College of Medicine after our visit to my OB. > > > > > > I am very scared and excited at the same time. Can anyone tell me > > > about their experience with their second pregnancy? What were you > > > faced with? Did anyone say hurtful things to you? How did you > > > handle the pregancy? > > > > > > Statistically, I know the risk is only 1-2% if you do not have the > > > CHARGE gene and I am sure that my doctor and the genetic specialists > > > will fill me in on the medical information but I want to also know > > > about the emotional side. > > > > > > Any information would be greatly appreciated. > > > > > > Thanks, > > > > > > > > > > > > > > > > -- > > " It is far better to grasp the universe as it really is than to persist > > in > > delusion, however satisfying and reassuring. " --Carl Sagan > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2007 Report Share Posted May 10, 2007 , thank you for sharing with us. good luck. pam Information We had our first child, a beautiful baby boy, Logan, in November last year. He was diagnosed with CHARGE. He underwent several surgeries and was doing really good. At the beginning of December he developed pneumonia and also Necrotizing Enterocolitis (NEC). NEC is an infection in the intestines. The surgeons tried to go in to repair his intestines but the infection had already destroyed all of his intestines. Sadly, passed away on December 5, 2006. Even though we only had him in this world for 33 days, he new he was loved. He was and still is our angel. We were preparing for the road ahead for our family and researching CHARGE and all that we needed to be prepared for. We lost him before we could even bring him home from the hospital. I would give anything to have him back with us. I have told many people that I never realized how many children were born with genetic conditions. I have so much respect for all parents and the children that have these conditions. These children are all the same as any other child without CHARGE. They all need love and I cannot tell you how great all of you are. So many emotions run through my head about what life would be like now. I would so love to just hug and kiss our little everyday. We are now trying to get as much information as we can to plan for our second child. We will be going to genetic counseling through Baylor College of Medicine after our visit to my OB. I am very scared and excited at the same time. Can anyone tell me about their experience with their second pregnancy? What were you faced with? Did anyone say hurtful things to you? How did you handle the pregancy? Statistically, I know the risk is only 1-2% if you do not have the CHARGE gene and I am sure that my doctor and the genetic specialists will fill me in on the medical information but I want to also know about the emotional side. Any information would be greatly appreciated. Thanks, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2007 Report Share Posted May 11, 2007 Hi , I had my son with CHARGE after having my daughter, who was healthy. My son's pregnancy was very different and there were things not right from the start. I had too much fluid and didn't feel right, but the doctor told me I was a complaining pregnant woman. Then when I got pregnant with my third, I could tell it was okay because I felt as I did with my older daughter. However, I was very nervous, I had all the testing they could do, just to reassure myself. I had a fantastic high-risk doctor who took all my concerns and complaints very seriously. I didn't tell anyone I was pregnant until I was 25 weeks because I didn't want to talk about it. When my daughter was born they did work-ups on her and checked her hearing etc. So, long story short, I have 3 kids, 1 with CHARGE. Yes, my third pregnancy was a nerve racking experience, but was well worth it. Debbie Matasker Information We had our first child, a beautiful baby boy, Logan, in November last year. He was diagnosed with CHARGE. He underwent several surgeries and was doing really good. At the beginning of December he developed pneumonia and also Necrotizing Enterocolitis (NEC). NEC is an infection in the intestines. The surgeons tried to go in to repair his intestines but the infection had already destroyed all of his intestines. Sadly, passed away on December 5, 2006. Even though we only had him in this world for 33 days, he new he was loved. He was and still is our angel. We were preparing for the road ahead for our family and researching CHARGE and all that we needed to be prepared for. We lost him before we could even bring him home from the hospital. I would give anything to have him back with us. I have told many people that I never realized how many children were born with genetic conditions. I have so much respect for all parents and the children that have these conditions. These children are all the same as any other child without CHARGE. They all need love and I cannot tell you how great all of you are. So many emotions run through my head about what life would be like now. I would so love to just hug and kiss our little everyday. We are now trying to get as much information as we can to plan for our second child. We will be going to genetic counseling through Baylor College of Medicine after our visit to my OB. I am very scared and excited at the same time. Can anyone tell me about their experience with their second pregnancy? What were you faced with? Did anyone say hurtful things to you? How did you handle the pregancy? Statistically, I know the risk is only 1-2% if you do not have the CHARGE gene and I am sure that my doctor and the genetic specialists will fill me in on the medical information but I want to also know about the emotional side. Any information would be greatly appreciated. Thanks, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2007 Report Share Posted May 11, 2007 Thank you Debbie, I too had high amniotic fluid levels while I was pregnant with . We knew that he might have a problem but we were not 100% sure. Because of the high fluid, she could not read the ultrasound as alreadly. Looking back, maybe things didn't feel right to me, but being my first child I had nothing to compare it to. The specialist I delivered with is awesome and I will definetly be going back to her for our second. Unfortuately I went to a regular OB before I switched to the high-risk. This time I know I need to go to the high risk from the beginning. I appreciate you sharing with me. > > Hi , > > > > I had my son with CHARGE after having my daughter, who was healthy. My > son's pregnancy was very different and there were things not right from the > start. I had too much fluid and didn't feel right, but the doctor told me I > was a complaining pregnant woman. Then when I got pregnant with my third, I > could tell it was okay because I felt as I did with my older daughter. > However, I was very nervous, I had all the testing they could do, just to > reassure myself. I had a fantastic high-risk doctor who took all my > concerns and complaints very seriously. I didn't tell anyone I was pregnant > until I was 25 weeks because I didn't want to talk about it. When my > daughter was born they did work-ups on her and checked her hearing etc. So, > long story short, I have 3 kids, 1 with CHARGE. Yes, my third pregnancy was > a nerve racking experience, but was well worth it. > > > > Debbie Matasker > > > > Information > > > > We had our first child, a beautiful baby boy, Logan, in > November last year. He was diagnosed with CHARGE. He underwent > several surgeries and was doing really good. At the beginning of > December he developed pneumonia and also Necrotizing Enterocolitis > (NEC). NEC is an infection in the intestines. The surgeons tried > to go in to repair his intestines but the infection had already > destroyed all of his intestines. > > Sadly, passed away on December 5, 2006. Even though we only > had him in this world for 33 days, he new he was loved. He was and > still is our angel. We were preparing for the road ahead for our > family and researching CHARGE and all that we needed to be prepared > for. We lost him before we could even bring him home from the > hospital. I would give anything to have him back with us. > > I have told many people that I never realized how many children were > born with genetic conditions. I have so much respect for all > parents and the children that have these conditions. These children > are all the same as any other child without CHARGE. They all need > love and I cannot tell you how great all of you are. > > So many emotions run through my head about what life would be like > now. I would so love to just hug and kiss our little everyday. > > We are now trying to get as much information as we can to plan for > our second child. We will be going to genetic counseling through > Baylor College of Medicine after our visit to my OB. > > I am very scared and excited at the same time. Can anyone tell me > about their experience with their second pregnancy? What were you > faced with? Did anyone say hurtful things to you? How did you > handle the pregancy? > > Statistically, I know the risk is only 1-2% if you do not have the > CHARGE gene and I am sure that my doctor and the genetic specialists > will fill me in on the medical information but I want to also know > about the emotional side. > > Any information would be greatly appreciated. > > Thanks, > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2007 Report Share Posted May 11, 2007 are you in houston? or near there, i too had polyhydrimos w/ my second preg, and went to see high risk, they really didn't see anything wrong, but we did do fetal echos at tch and they did see the heart defects, which enabled us to have him at st lukes, so i would totally recommend getting fetal echos done in second pregnancy. it saved my sons life. we have an older daughter who doesn't have charge, and maybe want another, we don't know yet, but we will do fetal echos if we ever have another one, my son is 3 right now and is doing great! > > > > Hi , > > > > > > > > I had my son with CHARGE after having my daughter, who was > healthy. My > > son's pregnancy was very different and there were things not right > from the > > start. I had too much fluid and didn't feel right, but the doctor > told me I > > was a complaining pregnant woman. Then when I got pregnant with my > third, I > > could tell it was okay because I felt as I did with my older > daughter. > > However, I was very nervous, I had all the testing they could do, > just to > > reassure myself. I had a fantastic high-risk doctor who took all my > > concerns and complaints very seriously. I didn't tell anyone I was > pregnant > > until I was 25 weeks because I didn't want to talk about it. When > my > > daughter was born they did work-ups on her and checked her hearing > etc. So, > > long story short, I have 3 kids, 1 with CHARGE. Yes, my third > pregnancy was > > a nerve racking experience, but was well worth it. > > > > > > > > Debbie Matasker > > > > > > > > Information > > > > > > > > We had our first child, a beautiful baby boy, Logan, in > > November last year. He was diagnosed with CHARGE. He underwent > > several surgeries and was doing really good. At the beginning of > > December he developed pneumonia and also Necrotizing Enterocolitis > > (NEC). NEC is an infection in the intestines. The surgeons tried > > to go in to repair his intestines but the infection had already > > destroyed all of his intestines. > > > > Sadly, passed away on December 5, 2006. Even though we only > > had him in this world for 33 days, he new he was loved. He was and > > still is our angel. We were preparing for the road ahead for our > > family and researching CHARGE and all that we needed to be prepared > > for. We lost him before we could even bring him home from the > > hospital. I would give anything to have him back with us. > > > > I have told many people that I never realized how many children > were > > born with genetic conditions. I have so much respect for all > > parents and the children that have these conditions. These children > > are all the same as any other child without CHARGE. They all need > > love and I cannot tell you how great all of you are. > > > > So many emotions run through my head about what life would be like > > now. I would so love to just hug and kiss our little everyday. > > > > We are now trying to get as much information as we can to plan for > > our second child. We will be going to genetic counseling through > > Baylor College of Medicine after our visit to my OB. > > > > I am very scared and excited at the same time. Can anyone tell me > > about their experience with their second pregnancy? What were you > > faced with? Did anyone say hurtful things to you? How did you > > handle the pregancy? > > > > Statistically, I know the risk is only 1-2% if you do not have the > > CHARGE gene and I am sure that my doctor and the genetic > specialists > > will fill me in on the medical information but I want to also know > > about the emotional side. > > > > Any information would be greatly appreciated. > > > > Thanks, > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2007 Report Share Posted May 12, 2007 I am finally ready to share my story with the list serve. Those that went to the Texas CHARGERS retreat last October already know. Since the subject came up about children after your child with CHARGE syndrome, I feel compelled to share it. We had 3 boys, who is 11, Dylan 4 and (our child with CHARGE syndrome) who will be 2 in August. was born Aug 2005 and in March of 2006 I had a tubal ligation (where they clamp your fallopian tubes so you won't have any more children). We were happy with our 3 boys and since needed so much medical attention and therapy were done. HOWEVER, in July 2006 I learned that I was pregnant again and couldn't believe it! 3 days after I learned I was pregnant I had an appointment in land at the National Eye Institute with Dr. who is studying Coloboma (Im in TX). and I went to See Dr. and I was a nervous wreck and actually broke down in his office. He must have felt sorry for me because he arranged for me to have genetic testing performed on for the CHARGE gene ordered ASAP, they did find the mutation for . When I got home to Texas I saw a perinatologist and had test performed on my fetus I can't remember the name of the test that they performed it wasn't an amnio but one that they can do before that. If you are interested a prenatal genetist should be able to give you information. Insurance even paid for the test! And since they knew what gene had the mutation in they knew exactly what to look for. The fetus did not have the mutation and I learned it was another boy. He was born February 23 2007 and he is precious. I was very scared to have a child after my . We named the new baby Drew, and I had a talk with him in the delivery room. I told him about and told him that they will be buddies for ever and ever. It was a bit emotional throught the entire pregnancy because s birth was so traumatic I was so scared that being in the delivery room would trudge up all of the old memories, but I was wrong. Just like every kid is an individual each of the deliveries was individually special. I love all 4 of the boys in their own way. , my child with CHARGE syndrome, and I have a very special bond. All I have to do is say his name and it makes me smile. I know that sounds corney but I am SO proud of him. I hope that and Drew will be buds for ever, I actually think that having Drew around on the floor crawling around etc, will be an incentive for to explore more. The older boys have gifts they teach and gifts that they have learned since has been with us. I wish you and your family luck whatever you decide! In case you were wondering, my husband had a vesectomy.. It was his turn! Thanks, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2007 Report Share Posted May 12, 2007 Congratulations on the new baby and thank you for sharing your story, I can only imagine how scary it must've been for you. > > I am finally ready to share my story with the list serve. Those that > went to the Texas CHARGERS retreat last October already know. Since > the subject came up about children after your child with CHARGE > syndrome, I feel compelled to share it. We had 3 boys, who is > 11, Dylan 4 and (our child with CHARGE syndrome) who will be 2 > in August. was born Aug 2005 and in March of 2006 I had a > tubal ligation (where they clamp your fallopian tubes so you won't > have any more children). We were happy with our 3 boys and since > needed so much medical attention and therapy were done. > HOWEVER, in July 2006 I learned that I was pregnant again and > couldn't believe it! 3 days after I learned I was pregnant I had an > appointment in land at the National Eye Institute with Dr. > who is studying Coloboma (Im in TX). and I went to See Dr. > and I was a nervous wreck and actually broke down in his > office. He must have felt sorry for me because he arranged for me to > have genetic testing performed on for the CHARGE gene ordered > ASAP, they did find the mutation for . When I got home to Texas > I saw a perinatologist and had test performed on my fetus I can't > remember the name of the test that they performed it wasn't an amnio > but one that they can do before that. If you are interested a > prenatal genetist should be able to give you information. Insurance > even paid for the test! And since they knew what gene had the > mutation in they knew exactly what to look for. The fetus did not > have the mutation and I learned it was another boy. He was born > February 23 2007 and he is precious. I was very scared to have a > child after my . We named the new baby Drew, and I had a talk > with him in the delivery room. I told him about and told him > that they will be buddies for ever and ever. It was a bit emotional > throught the entire pregnancy because s birth was so traumatic I > was so scared that being in the delivery room would trudge up all of > the old memories, but I was wrong. Just like every kid is an > individual each of the deliveries was individually special. I love > all 4 of the boys in their own way. , my child with CHARGE > syndrome, and I have a very special bond. All I have to do is say > his name and it makes me smile. I know that sounds corney but I am > SO proud of him. I hope that and Drew will be buds for ever, I > actually think that having Drew around on the floor crawling around > etc, will be an incentive for to explore more. The older boys > have gifts they teach and gifts that they have learned since > has been with us. > I wish you and your family luck whatever you decide! > In case you were wondering, my husband had a vesectomy.. It was his > turn! > > Thanks, > > > > -- " It is far better to grasp the universe as it really is than to persist in delusion, however satisfying and reassuring. " --Carl Sagan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2007 Report Share Posted May 12, 2007 wow congratulations > > Congratulations on the new baby and thank you for sharing your story, I > can > only imagine how scary it must've been for you. > > > > > > > I am finally ready to share my story with the list serve. Those that > > went to the Texas CHARGERS retreat last October already know. Since > > the subject came up about children after your child with CHARGE > > syndrome, I feel compelled to share it. We had 3 boys, who is > > 11, Dylan 4 and (our child with CHARGE syndrome) who will be 2 > > in August. was born Aug 2005 and in March of 2006 I had a > > tubal ligation (where they clamp your fallopian tubes so you won't > > have any more children). We were happy with our 3 boys and since > > needed so much medical attention and therapy were done. > > HOWEVER, in July 2006 I learned that I was pregnant again and > > couldn't believe it! 3 days after I learned I was pregnant I had an > > appointment in land at the National Eye Institute with Dr. > > who is studying Coloboma (Im in TX). and I went to See Dr. > > and I was a nervous wreck and actually broke down in his > > office. He must have felt sorry for me because he arranged for me to > > have genetic testing performed on for the CHARGE gene ordered > > ASAP, they did find the mutation for . When I got home to Texas > > I saw a perinatologist and had test performed on my fetus I can't > > remember the name of the test that they performed it wasn't an amnio > > but one that they can do before that. If you are interested a > > prenatal genetist should be able to give you information. Insurance > > even paid for the test! And since they knew what gene had the > > mutation in they knew exactly what to look for. The fetus did not > > have the mutation and I learned it was another boy. He was born > > February 23 2007 and he is precious. I was very scared to have a > > child after my . We named the new baby Drew, and I had a talk > > with him in the delivery room. I told him about and told him > > that they will be buddies for ever and ever. It was a bit emotional > > throught the entire pregnancy because s birth was so traumatic I > > was so scared that being in the delivery room would trudge up all of > > the old memories, but I was wrong. Just like every kid is an > > individual each of the deliveries was individually special. I love > > all 4 of the boys in their own way. , my child with CHARGE > > syndrome, and I have a very special bond. All I have to do is say > > his name and it makes me smile. I know that sounds corney but I am > > SO proud of him. I hope that and Drew will be buds for ever, I > > actually think that having Drew around on the floor crawling around > > etc, will be an incentive for to explore more. The older boys > > have gifts they teach and gifts that they have learned since > > has been with us. > > I wish you and your family luck whatever you decide! > > In case you were wondering, my husband had a vesectomy.. It was his > > turn! > > > > Thanks, > > > > > > > > > > -- > " It is far better to grasp the universe as it really is than to persist in > delusion, however satisfying and reassuring. " --Carl Sagan > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2007 Report Share Posted May 12, 2007 - Wonderful story - and a hard one to share, I am sure. I am considering having my tubes tied and stories like that scare me to death! I'm so glad you were in the right place at the right time to get attention immediately, have your concerns alleviated, and get through the pregnancy fine. We can all imagine your worries. I'm so happy for you and your family! The mother of 4 boys?? And I think my 2 are challenging! Thanks for sharing. Michele W Aubrie's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 13, 2007 Report Share Posted May 13, 2007 Welcome to the group. I am so sorry to hear about Baby . I, too, have been there. We lost our first child, Zoey, to CHARGE in July 2006. She was 3 months 6 days old. Oh, how I long for her chubby face. We're currently 11 weeks pregnant with our second child. Zoey did test positive for the gene change- however, we declined CVS testing because of the miscarriage risk. That risk is higher than the risk of having another CHARGE baby. We'll have a level III ultrasound to check for symptoms of CHARGE. This time around I feel totally different. I, too, knew something was wrong very early on with Zoey. Wishing you peace as you make it through this difficult journey , Mama to Zoey Faith(4/25- 7/31 2006)CHargE > > I can't find the right words to say that I'm sorry you had such a short time with your baby. > > I have three girls, , my CHARGEr is in the middle. After adjusting to the news about the third child I was so wondrous and appreciated the how precious a typical healthy baby can be. I hope you get to experience that too. I admire your courage. > > Lori Myers > > Information > > > We had our first child, a beautiful baby boy, Logan, in > November last year. He was diagnosed with CHARGE. He underwent > several surgeries and was doing really good. At the beginning of > December he developed pneumonia and also Necrotizing Enterocolitis > (NEC). NEC is an infection in the intestines. The surgeons tried > to go in to repair his intestines but the infection had already > destroyed all of his intestines. > > Sadly, passed away on December 5, 2006. Even though we only > had him in this world for 33 days, he new he was loved. He was and > still is our angel. We were preparing for the road ahead for our > family and researching CHARGE and all that we needed to be prepared > for. We lost him before we could even bring him home from the > hospital. I would give anything to have him back with us. > > I have told many people that I never realized how many children were > born with genetic conditions. I have so much respect for all > parents and the children that have these conditions. These children > are all the same as any other child without CHARGE. They all need > love and I cannot tell you how great all of you are. > > So many emotions run through my head about what life would be like > now. I would so love to just hug and kiss our little everyday. > > We are now trying to get as much information as we can to plan for > our second child. We will be going to genetic counseling through > Baylor College of Medicine after our visit to my OB. > > I am very scared and excited at the same time. Can anyone tell me > about their experience with their second pregnancy? What were you > faced with? Did anyone say hurtful things to you? How did you > handle the pregancy? > > Statistically, I know the risk is only 1-2% if you do not have the > CHARGE gene and I am sure that my doctor and the genetic specialists > will fill me in on the medical information but I want to also know > about the emotional side. > > Any information would be greatly appreciated. > > Thanks, > > > > > > > Quote Link to comment Share on other sites More sharing options...
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