Guest guest Posted April 15, 2003 Report Share Posted April 15, 2003 Leah, We had a perfectly healthy little girl after having twins with CHARGE, and losing one of them. Our youngest has been the best thing that ever happened to , our CHARGEr, as she wrestles and argues and fights with her just like any two siblings would do. Our oldest could not do this because was so medically fragile when she was younger. Yes, it was a stressful pregnancy and we were prepared for the worst, but found the best! I would have to say it was a less stressful pregnancy than the twins, though, as we knew there were problems before they were born. So I spent 3 long months of pregnancy wondering if I would get to take a baby or two or none home... G, mom to Makenzie, 11, , 7, Kaci, 3 and , CHARGE? in heaven Hello Again > Helllo everyone! > > My name is Leah and I have a 3 year old daughter (SYDNEY) with Charge > syndrome, I was on the list for a while after she was born but life got > hectic as I am positive you all understand. I would like to get back with > the swing of things, because I have found myself needing lots of answers that > only CHARGE parents can give!!!!!!!!!!!! > > Just a little info, won't drag on and on, Sydney has a trach and mic-key, > she had bilateral retinal colobomas, mild to moderate hearing loss, and > bilateral choanal atresia. Sydney is also a VERY ACTIVE CHILD!!! > > I have a few questions we have started taking Sydney to see the docs at > the aireodigestive clinic at Cincinnati Childrens, is anyone out there > currently taking their child there, and if so what do you think????? They > recently took Sydney's saliva glands out, has anyone had this procedure > done??? > > Also, In OCT, we took to Sydney to see MArcy Freed in Cleveland, LOVE > HER!!!!!!! She said Sydney was the most stubborn child she had ever worked > with. The stim was a success in that she can now swallow, but she refuses to > take anything by mouth no matter what we try, PLEASE if anyone can give me > suggestions on things that have worked for you and possibly how long it > takes!!!! > > I am also 6 and 1/2 months pregnant and scared out of my wits, because the > obvious I am afraid of having another CHARGE child, can anyone tell me their > expierence with having another child after the charge child! I am also > curious to know how many of you have more than one child with charge!!! > > No more bombarding for now any answers or responses will be greatly > apprec.!!!!!! > > THANKS AND GLAD TO BE BACK HOPEFULLY TO STAY!!!!!!!!!!!! > > LEAH > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2003 Report Share Posted April 15, 2003 Leah- Just wanted to say " hi! " and welcome you back to the list. I can't begin to imagine how overwhelming it must be to be pregnant and dealing with all of Syndney's issues at the same time!! I'll send thoughts of strength and sanity your way :-) My daughter, Aubrie, is 5. She doesn't have a trach or feeding tube (Gtube til age 1.5 or so). She is an oral eater now without ever having the stim therapy or anything. I'm afraid I don't have any great advice or suggestions in any of your current areas of concern. I'm sure others will though. In the hard times, remember that Sydney's stubbornness may turn out to be one of her greatest assets. I'm sure there are times when it drives you crazy. But many of our kids owe their successes to a strong will and a stubborn streak. In fact, they may get that from us as the same attributes help us through this journey as parents. It's so good to have you back. The more the merrier in this family! Michele W mom to Aubrie (5 yrs) CHaRgE and (11 yrs) Hello Again Helllo everyone! My name is Leah and I have a 3 year old daughter (SYDNEY) with Charge syndrome, I was on the list for a while after she was born but life got hectic as I am positive you all understand. I would like to get back with the swing of things, because I have found myself needing lots of answers that only CHARGE parents can give!!!!!!!!!!!! Just a little info, won't drag on and on, Sydney has a trach and mic-key, she had bilateral retinal colobomas, mild to moderate hearing loss, and bilateral choanal atresia. Sydney is also a VERY ACTIVE CHILD!!! I have a few questions we have started taking Sydney to see the docs at the aireodigestive clinic at Cincinnati Childrens, is anyone out there currently taking their child there, and if so what do you think????? They recently took Sydney's saliva glands out, has anyone had this procedure done??? Also, In OCT, we took to Sydney to see MArcy Freed in Cleveland, LOVE HER!!!!!!! She said Sydney was the most stubborn child she had ever worked with. The stim was a success in that she can now swallow, but she refuses to take anything by mouth no matter what we try, PLEASE if anyone can give me suggestions on things that have worked for you and possibly how long it takes!!!! I am also 6 and 1/2 months pregnant and scared out of my wits, because the obvious I am afraid of having another CHARGE child, can anyone tell me their expierence with having another child after the charge child! I am also curious to know how many of you have more than one child with charge!!! No more bombarding for now any answers or responses will be greatly apprec.!!!!!! THANKS AND GLAD TO BE BACK HOPEFULLY TO STAY!!!!!!!!!!!! LEAH Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2003 Report Share Posted April 15, 2003 Leah, Welcome back to the list, it's good to see you again. Regarding the 2nd child - it has been known to recur within families, but it does seem rare. Do you have the CHARGE manual from the US Foundation? www.chargesyndrome.org - there is a section in there about genetics, diagnosis and prenatal diagnosis you may want to read/share with your physician. Also re: the " VERY ACTIVE CHILD " .....we are THERE with you! ~ Weir Mom to Kennedy, 5yr old CHARGEr, 13, 12, and wife to Graeme Saint , New Brunswick, Canada Visit the Weir Family Website - http://personal.nbnet.nb.ca/gweir CHARGE Syndrome Canada - http://www.chargesyndrome.ca Hello Again Helllo everyone! My name is Leah and I have a 3 year old daughter (SYDNEY) with Charge syndrome, I was on the list for a while after she was born but life got hectic as I am positive you all understand. I would like to get back with the swing of things, because I have found myself needing lots of answers that only CHARGE parents can give!!!!!!!!!!!! Just a little info, won't drag on and on, Sydney has a trach and mic-key, she had bilateral retinal colobomas, mild to moderate hearing loss, and bilateral choanal atresia. Sydney is also a VERY ACTIVE CHILD!!! I have a few questions we have started taking Sydney to see the docs at the aireodigestive clinic at Cincinnati Childrens, is anyone out there currently taking their child there, and if so what do you think????? They recently took Sydney's saliva glands out, has anyone had this procedure done??? Also, In OCT, we took to Sydney to see MArcy Freed in Cleveland, LOVE HER!!!!!!! She said Sydney was the most stubborn child she had ever worked with. The stim was a success in that she can now swallow, but she refuses to take anything by mouth no matter what we try, PLEASE if anyone can give me suggestions on things that have worked for you and possibly how long it takes!!!! I am also 6 and 1/2 months pregnant and scared out of my wits, because the obvious I am afraid of having another CHARGE child, can anyone tell me their expierence with having another child after the charge child! I am also curious to know how many of you have more than one child with charge!!! No more bombarding for now any answers or responses will be greatly apprec.!!!!!! THANKS AND GLAD TO BE BACK HOPEFULLY TO STAY!!!!!!!!!!!! LEAH Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2003 Report Share Posted April 16, 2003 Hello Lee and Sydney, It is nice to meet you. I am the third of four children and the only one with CHARGE. Kay Adult charger She who laughs.... LASTS Hello Again > Helllo everyone! > > My name is Leah and I have a 3 year old daughter (SYDNEY) with Charge > syndrome, I was on the list for a while after she was born but life got > hectic as I am positive you all understand. I would like to get back with > the swing of things, because I have found myself needing lots of answers that > only CHARGE parents can give!!!!!!!!!!!! > > Just a little info, won't drag on and on, Sydney has a trach and mic-key, > she had bilateral retinal colobomas, mild to moderate hearing loss, and > bilateral choanal atresia. Sydney is also a VERY ACTIVE CHILD!!! > > I have a few questions we have started taking Sydney to see the docs at > the aireodigestive clinic at Cincinnati Childrens, is anyone out there > currently taking their child there, and if so what do you think????? They > recently took Sydney's saliva glands out, has anyone had this procedure > done??? > > Also, In OCT, we took to Sydney to see MArcy Freed in Cleveland, LOVE > HER!!!!!!! She said Sydney was the most stubborn child she had ever worked > with. The stim was a success in that she can now swallow, but she refuses to > take anything by mouth no matter what we try, PLEASE if anyone can give me > suggestions on things that have worked for you and possibly how long it > takes!!!! > > I am also 6 and 1/2 months pregnant and scared out of my wits, because the > obvious I am afraid of having another CHARGE child, can anyone tell me their > expierence with having another child after the charge child! I am also > curious to know how many of you have more than one child with charge!!! > > No more bombarding for now any answers or responses will be greatly > apprec.!!!!!! > > THANKS AND GLAD TO BE BACK HOPEFULLY TO STAY!!!!!!!!!!!! > > LEAH > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2003 Report Share Posted April 16, 2003 leah,Hi, our daughter Haven is 31/2 we went to Marcy Freed,when she was 8mons. old the stim worked there but as soon as we got home , there was nothing . And we even went back twice. No luck. We heard she got shut down ..?????? We also took the risk and decided to have another child after Haven. We needed to do it for our family, just take a little bit of the medical aspect off things and bring us more joy.I was terrified my whole pregnancy but it was the best thing we ever did! Especially for Haven , it pushed her along and made her a big sister and our son is 5 and he really needed her too!With Haven he couldn't barely hold her or play with her because she was always so sick, until now.patrice arnold mom of Haven 31/2 yr. old charger. Hello Again > Helllo everyone! > > My name is Leah and I have a 3 year old daughter (SYDNEY) with Charge > syndrome, I was on the list for a while after she was born but life got > hectic as I am positive you all understand. I would like to get back with > the swing of things, because I have found myself needing lots of answers that > only CHARGE parents can give!!!!!!!!!!!! > > Just a little info, won't drag on and on, Sydney has a trach and mic-key, > she had bilateral retinal colobomas, mild to moderate hearing loss, and > bilateral choanal atresia. Sydney is also a VERY ACTIVE CHILD!!! > > I have a few questions we have started taking Sydney to see the docs at > the aireodigestive clinic at Cincinnati Childrens, is anyone out there > currently taking their child there, and if so what do you think????? They > recently took Sydney's saliva glands out, has anyone had this procedure > done??? > > Also, In OCT, we took to Sydney to see MArcy Freed in Cleveland, LOVE > HER!!!!!!! She said Sydney was the most stubborn child she had ever worked > with. The stim was a success in that she can now swallow, but she refuses to > take anything by mouth no matter what we try, PLEASE if anyone can give me > suggestions on things that have worked for you and possibly how long it > takes!!!! > > I am also 6 and 1/2 months pregnant and scared out of my wits, because the > obvious I am afraid of having another CHARGE child, can anyone tell me their > expierence with having another child after the charge child! I am also > curious to know how many of you have more than one child with charge!!! > > No more bombarding for now any answers or responses will be greatly > apprec.!!!!!! > > THANKS AND GLAD TO BE BACK HOPEFULLY TO STAY!!!!!!!!!!!! > > LEAH > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2003 Report Share Posted April 16, 2003 Leah-welcome, im the 3rd of four children (it seems to be common that) with charge and the only one, welcome to the list and sorry ur having a bad time worrying about ur pregnancy, it will be a wonderful child no matter what Belinda > leah,Hi, our daughter Haven is 31/2 we went to Marcy Freed,when she was > 8mons. old the stim worked there but as soon as we got home , there was > nothing . And we even went back twice. No luck. We heard she got shut down > .?????? We also took the risk and decided to have another child after Haven. > We needed to do it for our family, just take a little bit of the medical > aspect off things and bring us more joy.I was terrified my whole pregnancy > but it was the best thing we ever did! Especially for Haven , it pushed her > along and made her a big sister and our son is 5 and he really needed her > too!With Haven he couldn't barely hold her or play with her because she was > always so sick, until now.patrice arnold mom of Haven 31/2 yr. old charger. > Hello Again > > > > Helllo everyone! > > > > My name is Leah and I have a 3 year old daughter (SYDNEY) with Charge > > syndrome, I was on the list for a while after she was born but life got > > hectic as I am positive you all understand. I would like to get back with > > the swing of things, because I have found myself needing lots of answers > that > > only CHARGE parents can give!!!!!!!!!!!! > > > > Just a little info, won't drag on and on, Sydney has a trach and > mic-key, > > she had bilateral retinal colobomas, mild to moderate hearing loss, and > > bilateral choanal atresia. Sydney is also a VERY ACTIVE CHILD!!! > > > > I have a few questions we have started taking Sydney to see the docs > at > > the aireodigestive clinic at Cincinnati Childrens, is anyone out there > > currently taking their child there, and if so what do you think????? They > > recently took Sydney's saliva glands out, has anyone had this procedure > > done??? > > > > Also, In OCT, we took to Sydney to see MArcy Freed in Cleveland, LOVE > > HER!!!!!!! She said Sydney was the most stubborn child she had ever > worked > > with. The stim was a success in that she can now swallow, but she refuses > to > > take anything by mouth no matter what we try, PLEASE if anyone can give > me > > suggestions on things that have worked for you and possibly how long it > > takes!!!! > > > > I am also 6 and 1/2 months pregnant and scared out of my wits, because > the > > obvious I am afraid of having another CHARGE child, can anyone tell me > their > > expierence with having another child after the charge child! I am also > > curious to know how many of you have more than one child with charge!!! > > > > No more bombarding for now any answers or responses will be greatly > > apprec.!!!!!! > > > > THANKS AND GLAD TO BE BACK HOPEFULLY TO STAY!!!!!!!!!!!! > > > > LEAH > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2003 Report Share Posted April 17, 2003 I just had my 3rd child in October - my CHARGEr was 2 in September and was 5 in August. Emma (the third) is a big fat healthy girl! only outweighs her by 3 pounds! I was scared to death about having a baby and felt like I was betraying - but is all works out and we are a happy (and crazy) family. Emma was an answer to prayers I didn't know I had - it is so wonderful to experience a healthy child again after the horrible experiences with (heart surgeries, trach, feeding tube - still g-button fed, ECMO life support, etc.). I hope you too have a wonderful experience and no matter how crazy it is we only do what we can do. We just try to laugh at the craziness--and Zoloft helps with what I call post--stress! We are in the process of weaning from her g-button feedings. She would not put anything in her mouth until we decreased her feeds. Now she will drink about 5 ounces a day and will swallow baby food types of food. Here willingness to eat is definitely tied to hunger - or not being full from all the pedisure. Good luck! Lori Myers LEMER1710@... wrote: > Helllo everyone! > > My name is Leah and I have a 3 year old daughter (SYDNEY) with Charge > syndrome, I was on the list for a while after she was born but life got > hectic as I am positive you all understand. I would like to get back with > the swing of things, because I have found myself needing lots of answers that > only CHARGE parents can give!!!!!!!!!!!! > > Just a little info, won't drag on and on, Sydney has a trach and mic-key, > she had bilateral retinal colobomas, mild to moderate hearing loss, and > bilateral choanal atresia. Sydney is also a VERY ACTIVE CHILD!!! > > I have a few questions we have started taking Sydney to see the docs at > the aireodigestive clinic at Cincinnati Childrens, is anyone out there > currently taking their child there, and if so what do you think????? They > recently took Sydney's saliva glands out, has anyone had this procedure > done??? > > Also, In OCT, we took to Sydney to see MArcy Freed in Cleveland, LOVE > HER!!!!!!! She said Sydney was the most stubborn child she had ever worked > with. The stim was a success in that she can now swallow, but she refuses to > take anything by mouth no matter what we try, PLEASE if anyone can give me > suggestions on things that have worked for you and possibly how long it > takes!!!! > > I am also 6 and 1/2 months pregnant and scared out of my wits, because the > obvious I am afraid of having another CHARGE child, can anyone tell me their > expierence with having another child after the charge child! I am also > curious to know how many of you have more than one child with charge!!! > > No more bombarding for now any answers or responses will be greatly > apprec.!!!!!! > > THANKS AND GLAD TO BE BACK HOPEFULLY TO STAY!!!!!!!!!!!! > > LEAH > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2008 Report Share Posted April 27, 2008 Just wanted to share with you I have recently saw a pain specialist who gave me a series of injections in my back for the pain. I was walking my dog and noticed I had no pain. I was singing happy day. I also received a series of IV therapy for the fibromyaligia which helped trememdously with the fatigue and the muscle spasms. I still have some spasms, but they are not as severe or as frequent. Regards, Rosemary Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2008 Report Share Posted April 27, 2008 Rosemary,its so good and uplifting to read a post like this.Keep singing happy day,I am happy for you. Larry > > Just wanted to share with you I have recently saw a pain specialist > who gave me a series of injections in my back for the pain. I was > walking my dog and noticed I had no pain. I was singing happy day. I > also received a series of IV therapy for the fibromyaligia which > helped trememdously with the fatigue and the muscle spasms. I still > have some spasms, but they are not as severe or as frequent. > Regards, > Rosemary > Quote Link to comment Share on other sites More sharing options...
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