Guest guest Posted May 14, 2006 Report Share Posted May 14, 2006 Hi welcome to the list. I have CHARGE. Chantelle Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 2006 Report Share Posted May 14, 2006 - Just wanted to welcome you to the group -- our CHARGE family. I hope you'll find the answers and support you need here. This group has been a lifesaver to me in keeping my sanity and helping me to make the best decisions for my daughter. Aubrie did not have breathing problems so I can't give you any advice there. I'm sure others will chime in with their experiences. I don't recall anyone having the specific procedure you mention, but it may be that I didn't pay attention when it came up in the past. Felix and your family will remain in my thoughts. I hope he is able to join your family at home soon! Michele W mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 2006 Report Share Posted May 14, 2006 , Welcome to the group I have 3 kids, is 10, is 3, and Eva (my CHARGEr) is 13 months. She just had open heart surgery to fix her ASD. She also has a hearing loss, colobomas, ASD and PDA, g- tube, sleep apnea, and 1 kidney. We have not gone threw Supraglottoplasty. But I will pray it all goes well for Felix. I hope you enjoy the group as much as I have and there are a great people in the group that can help with so much. Hugs, Crystal and Eva (13 month old CHARGEr) > > Hi all, > > Our son Felix (6 weeks) has been diagnosed with CHARGE. He had a TEF EA and was taken from our > local hospital to Children's Hospital in Boston the night he was born. Then about 1 1/2 - 2 weeks later we > first heard the words CHARGE Syndrome and we have been on a roller coaster ride ever since. > > In addition to the TEF EA, Felix has hearing loss, micropenis, coloboma of the optic nevre in his left eye, > two small ASDs in his heart (no surgery necessary yet), reflux, can't swallow and has laryngomalacia - he > had severe stridor and desatted often. This past week he has a G-J tube placed and had a supraglottoplasty > to remove some severely swollen tissue around his larynx. He did well the first few hours after they > extubated him with good oxygenation (no desats). We came back in this morning to find him back on the > vent and they say they want to keep it in for a couple of days. I am afraid if this doesn't improve they will > want to give him a trach because they won't let us take him home until his breathing improves. Does > anyone have experience with this surgery (Supraglottoplasty)? Was it successful? > > Thanks for your help! > > > > Mom to Max 2, and Felix 6 weeks CHARGEr > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 2006 Report Share Posted May 14, 2006 , Welcome to the group I have 3 kids, is 10, is 3, and Eva (my CHARGEr) is 13 months. She just had open heart surgery to fix her ASD. She also has a hearing loss, colobomas, ASD and PDA, g- tube, sleep apnea, and 1 kidney. We have not gone threw Supraglottoplasty. But I will pray it all goes well for Felix. I hope you enjoy the group as much as I have and there are a great people in the group that can help with so much. Hugs, Crystal and Eva (13 month old CHARGEr) > > Hi all, > > Our son Felix (6 weeks) has been diagnosed with CHARGE. He had a TEF EA and was taken from our > local hospital to Children's Hospital in Boston the night he was born. Then about 1 1/2 - 2 weeks later we > first heard the words CHARGE Syndrome and we have been on a roller coaster ride ever since. > > In addition to the TEF EA, Felix has hearing loss, micropenis, coloboma of the optic nevre in his left eye, > two small ASDs in his heart (no surgery necessary yet), reflux, can't swallow and has laryngomalacia - he > had severe stridor and desatted often. This past week he has a G-J tube placed and had a supraglottoplasty > to remove some severely swollen tissue around his larynx. He did well the first few hours after they > extubated him with good oxygenation (no desats). We came back in this morning to find him back on the > vent and they say they want to keep it in for a couple of days. I am afraid if this doesn't improve they will > want to give him a trach because they won't let us take him home until his breathing improves. Does > anyone have experience with this surgery (Supraglottoplasty)? Was it successful? > > Thanks for your help! > > > > Mom to Max 2, and Felix 6 weeks CHARGEr > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 2006 Report Share Posted May 14, 2006 , Welcome to the group I have 3 kids, is 10, is 3, and Eva (my CHARGEr) is 13 months. She just had open heart surgery to fix her ASD. She also has a hearing loss, colobomas, ASD and PDA, g- tube, sleep apnea, and 1 kidney. We have not gone threw Supraglottoplasty. But I will pray it all goes well for Felix. I hope you enjoy the group as much as I have and there are a great people in the group that can help with so much. Hugs, Crystal and Eva (13 month old CHARGEr) > > Hi all, > > Our son Felix (6 weeks) has been diagnosed with CHARGE. He had a TEF EA and was taken from our > local hospital to Children's Hospital in Boston the night he was born. Then about 1 1/2 - 2 weeks later we > first heard the words CHARGE Syndrome and we have been on a roller coaster ride ever since. > > In addition to the TEF EA, Felix has hearing loss, micropenis, coloboma of the optic nevre in his left eye, > two small ASDs in his heart (no surgery necessary yet), reflux, can't swallow and has laryngomalacia - he > had severe stridor and desatted often. This past week he has a G-J tube placed and had a supraglottoplasty > to remove some severely swollen tissue around his larynx. He did well the first few hours after they > extubated him with good oxygenation (no desats). We came back in this morning to find him back on the > vent and they say they want to keep it in for a couple of days. I am afraid if this doesn't improve they will > want to give him a trach because they won't let us take him home until his breathing improves. Does > anyone have experience with this surgery (Supraglottoplasty)? Was it successful? > > Thanks for your help! > > > > Mom to Max 2, and Felix 6 weeks CHARGEr > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 2006 Report Share Posted May 14, 2006 , Congratulations on the birth of your precious Felix. Roller coaster ride is certainly an accurate description for those early days; I remember them well. I'm sorry I don't have any help with the supraglottoplasty or the trach but I'm sure some of the other parents who've been down that road will be happy to share. You'll hear this a lot in the next little while, but I'll say it anyway, things DO get easier and eventually calm down. You won't believe it for a long while, but they will. I promise. Many hugs from the north, Weir & family -- Weir kawfolks@... Web Site: http://ca.geocities.com/weirfamilyrogers Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 2006 Report Share Posted May 14, 2006 , Welcome to the group, and congrats on your sweet little Felix. I will tell you that the first time I heard and read about CHARGE, I was devasted because I had no idea what this meant for my child's future. However, 2 years later, I have a loving, happy, sweet little girl who is so much more than those early predictions gave hope for. Carmen (2 years next month) has had lots of issues surrounding her trachea and was trached at 2 weeks old. We are just now at the point where her trach may come out in the next 6 weeks. Everything you are being presented with is a lot to take in and adjust to, however, be strong and know that it does get easier, and you will have a connection with your child that can't compare! God Bless you and good luck with your adjustment to this new world. B. mom to Zachary 4.9 years and Carmen 23 months (CHARGE) > > Hi all, > > Our son Felix (6 weeks) has been diagnosed with CHARGE. He had a TEF EA and was taken from our > local hospital to Children's Hospital in Boston the night he was born. Then about 1 1/2 - 2 weeks later we > first heard the words CHARGE Syndrome and we have been on a roller coaster ride ever since. > > In addition to the TEF EA, Felix has hearing loss, micropenis, coloboma of the optic nevre in his left eye, > two small ASDs in his heart (no surgery necessary yet), reflux, can't swallow and has laryngomalacia - he > had severe stridor and desatted often. This past week he has a G-J tube placed and had a supraglottoplasty > to remove some severely swollen tissue around his larynx. He did well the first few hours after they > extubated him with good oxygenation (no desats). We came back in this morning to find him back on the > vent and they say they want to keep it in for a couple of days. I am afraid if this doesn't improve they will > want to give him a trach because they won't let us take him home until his breathing improves. Does > anyone have experience with this surgery (Supraglottoplasty)? Was it successful? > > Thanks for your help! > > > > Mom to Max 2, and Felix 6 weeks CHARGEr > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 2006 Report Share Posted May 14, 2006 , Welcome to the group, and congrats on your sweet little Felix. I will tell you that the first time I heard and read about CHARGE, I was devasted because I had no idea what this meant for my child's future. However, 2 years later, I have a loving, happy, sweet little girl who is so much more than those early predictions gave hope for. Carmen (2 years next month) has had lots of issues surrounding her trachea and was trached at 2 weeks old. We are just now at the point where her trach may come out in the next 6 weeks. Everything you are being presented with is a lot to take in and adjust to, however, be strong and know that it does get easier, and you will have a connection with your child that can't compare! God Bless you and good luck with your adjustment to this new world. B. mom to Zachary 4.9 years and Carmen 23 months (CHARGE) > > Hi all, > > Our son Felix (6 weeks) has been diagnosed with CHARGE. He had a TEF EA and was taken from our > local hospital to Children's Hospital in Boston the night he was born. Then about 1 1/2 - 2 weeks later we > first heard the words CHARGE Syndrome and we have been on a roller coaster ride ever since. > > In addition to the TEF EA, Felix has hearing loss, micropenis, coloboma of the optic nevre in his left eye, > two small ASDs in his heart (no surgery necessary yet), reflux, can't swallow and has laryngomalacia - he > had severe stridor and desatted often. This past week he has a G-J tube placed and had a supraglottoplasty > to remove some severely swollen tissue around his larynx. He did well the first few hours after they > extubated him with good oxygenation (no desats). We came back in this morning to find him back on the > vent and they say they want to keep it in for a couple of days. I am afraid if this doesn't improve they will > want to give him a trach because they won't let us take him home until his breathing improves. Does > anyone have experience with this surgery (Supraglottoplasty)? Was it successful? > > Thanks for your help! > > > > Mom to Max 2, and Felix 6 weeks CHARGEr > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 2006 Report Share Posted May 14, 2006 , Welcome to the group, and congrats on your sweet little Felix. I will tell you that the first time I heard and read about CHARGE, I was devasted because I had no idea what this meant for my child's future. However, 2 years later, I have a loving, happy, sweet little girl who is so much more than those early predictions gave hope for. Carmen (2 years next month) has had lots of issues surrounding her trachea and was trached at 2 weeks old. We are just now at the point where her trach may come out in the next 6 weeks. Everything you are being presented with is a lot to take in and adjust to, however, be strong and know that it does get easier, and you will have a connection with your child that can't compare! God Bless you and good luck with your adjustment to this new world. B. mom to Zachary 4.9 years and Carmen 23 months (CHARGE) > > Hi all, > > Our son Felix (6 weeks) has been diagnosed with CHARGE. He had a TEF EA and was taken from our > local hospital to Children's Hospital in Boston the night he was born. Then about 1 1/2 - 2 weeks later we > first heard the words CHARGE Syndrome and we have been on a roller coaster ride ever since. > > In addition to the TEF EA, Felix has hearing loss, micropenis, coloboma of the optic nevre in his left eye, > two small ASDs in his heart (no surgery necessary yet), reflux, can't swallow and has laryngomalacia - he > had severe stridor and desatted often. This past week he has a G-J tube placed and had a supraglottoplasty > to remove some severely swollen tissue around his larynx. He did well the first few hours after they > extubated him with good oxygenation (no desats). We came back in this morning to find him back on the > vent and they say they want to keep it in for a couple of days. I am afraid if this doesn't improve they will > want to give him a trach because they won't let us take him home until his breathing improves. Does > anyone have experience with this surgery (Supraglottoplasty)? Was it successful? > > Thanks for your help! > > > > Mom to Max 2, and Felix 6 weeks CHARGEr > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 2006 Report Share Posted May 14, 2006 welcome im the charger in here ro one of them this is the best place i have refulux could he be aspirating with the tubes and that that is a point which can course pnmonias ive had this and i know soem tohers who r to in here les where r u hugs ellen > > , Welcome to the group, and congrats on your sweet little > Felix. I will tell you that the first time I heard and read about > CHARGE, I was devasted because I had no idea what this meant for my > child's future. However, 2 years later, I have a loving, happy, > sweet little girl who is so much more than those early predictions > gave hope for. Carmen (2 years next month) has had lots of issues > surrounding her trachea and was trached at 2 weeks old. We are just > now at the point where her trach may come out in the next 6 weeks. > Everything you are being presented with is a lot to take in and > adjust to, however, be strong and know that it does get easier, and > you will have a connection with your child that can't compare! God > Bless you and good luck with your adjustment to this new world. > > B. mom to Zachary 4.9 years and Carmen 23 months (CHARGE) > > > > > > Hi all, > > > > Our son Felix (6 weeks) has been diagnosed with CHARGE. He had a > TEF EA and was taken from our > > local hospital to Children's Hospital in Boston the night he was > born. Then about 1 1/2 - 2 weeks later we > > first heard the words CHARGE Syndrome and we have been on a roller > coaster ride ever since. > > > > In addition to the TEF EA, Felix has hearing loss, micropenis, > coloboma of the optic nevre in his left eye, > > two small ASDs in his heart (no surgery necessary yet), reflux, > can't swallow and has laryngomalacia - he > > had severe stridor and desatted often. This past week he has a G-J > tube placed and had a supraglottoplasty > > to remove some severely swollen tissue around his larynx. He did > well the first few hours after they > > extubated him with good oxygenation (no desats). We came back in > this morning to find him back on the > > vent and they say they want to keep it in for a couple of days. I > am afraid if this doesn't improve they will > > want to give him a trach because they won't let us take him home > until his breathing improves. Does > > anyone have experience with this surgery (Supraglottoplasty)? Was > it successful? > > > > Thanks for your help! > > > > > > > > Mom to Max 2, and Felix 6 weeks CHARGEr > > > > > > > > > > CHARGE SYNDROME LISTSERV PHOTO PAGE: > http://www.imagestation.com/album/?id=2117043995 > > Membership of this email support group 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 web site at http://www.chargesyndrome.org > > 8th International > CHARGE Syndrome Conference, July, 2007. Information will be available at > www.chargesyndrome.org or by calling 1-. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 2006 Report Share Posted May 14, 2006 Hi , I can't help you with this surgery, because I don't have a CHARGE child or experience with this surgery, but there will be many people who will come forward. Where in Boston are you? Who are your doctors at Children " s? I ask because I work at the Perkins School for the Blind in Watertown, in the Deafblind Program where we have many CHARGE kids. There are also several parents on this list from MA and RI and CT. Good luck and if you need physican referrals, holler!!! There are several good ones at Children's who know CHARGE. Also, as your little one gets older and you are looking for Early Intervention, etc., holler again!! In the meantime good luck and welcome. pam ryan licensed educational psychologist perkins school for the blind watertown, ma 02472 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 2006 Report Share Posted May 14, 2006 Hi , I can't help you with this surgery, because I don't have a CHARGE child or experience with this surgery, but there will be many people who will come forward. Where in Boston are you? Who are your doctors at Children " s? I ask because I work at the Perkins School for the Blind in Watertown, in the Deafblind Program where we have many CHARGE kids. There are also several parents on this list from MA and RI and CT. Good luck and if you need physican referrals, holler!!! There are several good ones at Children's who know CHARGE. Also, as your little one gets older and you are looking for Early Intervention, etc., holler again!! In the meantime good luck and welcome. pam ryan licensed educational psychologist perkins school for the blind watertown, ma 02472 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 2006 Report Share Posted May 14, 2006 Hi , I can't help you with this surgery, because I don't have a CHARGE child or experience with this surgery, but there will be many people who will come forward. Where in Boston are you? Who are your doctors at Children " s? I ask because I work at the Perkins School for the Blind in Watertown, in the Deafblind Program where we have many CHARGE kids. There are also several parents on this list from MA and RI and CT. Good luck and if you need physican referrals, holler!!! There are several good ones at Children's who know CHARGE. Also, as your little one gets older and you are looking for Early Intervention, etc., holler again!! In the meantime good luck and welcome. pam ryan licensed educational psychologist perkins school for the blind watertown, ma 02472 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 2006 Report Share Posted May 14, 2006 pam is on my list of top people in here and she knows it love you pam > > Hi , > I can't help you with this surgery, because I don't have a CHARGE child or > experience with this surgery, but there will be many people who will come > forward. > > Where in Boston are you? Who are your doctors at Children " s? I ask > because I work at the Perkins School for the Blind in Watertown, in the > Deafblind Program where we have many CHARGE kids. There are also several > parents on this list from MA and RI and CT. > > Good luck and if you need physican referrals, holler!!! There are several > good ones at Children's who know CHARGE. Also, as your little one gets > older and you are looking for Early Intervention, etc., > holler again!! > > In the meantime good luck and welcome. > > pam ryan > licensed educational psychologist > perkins school for the blind > watertown, ma 02472 > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 2006 Report Share Posted May 14, 2006 pam is on my list of top people in here and she knows it love you pam > > Hi , > I can't help you with this surgery, because I don't have a CHARGE child or > experience with this surgery, but there will be many people who will come > forward. > > Where in Boston are you? Who are your doctors at Children " s? I ask > because I work at the Perkins School for the Blind in Watertown, in the > Deafblind Program where we have many CHARGE kids. There are also several > parents on this list from MA and RI and CT. > > Good luck and if you need physican referrals, holler!!! There are several > good ones at Children's who know CHARGE. Also, as your little one gets > older and you are looking for Early Intervention, etc., > holler again!! > > In the meantime good luck and welcome. > > pam ryan > licensed educational psychologist > perkins school for the blind > watertown, ma 02472 > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 2006 Report Share Posted May 14, 2006 Ellen, I love you, too!!! big face smile to you. pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 2006 Report Share Posted May 14, 2006 and Felix welcome to te listserv, my saving grace! I have 4 daughters, my youngest Amelie is 16 months old with charge, she has an ASD to do, PDA ligated, Cardiomyopathy, bilateral optic nerve Colobomas, profoundly deaf, GJ fed, aspirates frequently, reflux disease, nissen fundoplication surgery, severe hypotonia very floppy, absent semi circular canals, facial palsy, failed videofluroscopy. In her 16 months she has been home for only 4 months, so the roller coaster you describe rings many alarm bells to me, but its all worth the tears and joy, shes adorable, gorgeous just like me!!! good luck with Felix, take one day at a time on the ward thats my only advice, because our children are so complex and unpredictable, some days Amelie would look fantastic so they would extubate, and within hours she would have strider and be back on the vent, they just sometimes need longer. all the best Lesley Amelie and Fam (UK) > Ellen, > I love you, too!!! > big face smile to you. > pam > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 2006 Report Share Posted May 14, 2006 and Felix welcome to te listserv, my saving grace! I have 4 daughters, my youngest Amelie is 16 months old with charge, she has an ASD to do, PDA ligated, Cardiomyopathy, bilateral optic nerve Colobomas, profoundly deaf, GJ fed, aspirates frequently, reflux disease, nissen fundoplication surgery, severe hypotonia very floppy, absent semi circular canals, facial palsy, failed videofluroscopy. In her 16 months she has been home for only 4 months, so the roller coaster you describe rings many alarm bells to me, but its all worth the tears and joy, shes adorable, gorgeous just like me!!! good luck with Felix, take one day at a time on the ward thats my only advice, because our children are so complex and unpredictable, some days Amelie would look fantastic so they would extubate, and within hours she would have strider and be back on the vent, they just sometimes need longer. all the best Lesley Amelie and Fam (UK) > Ellen, > I love you, too!!! > big face smile to you. > pam > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 2006 Report Share Posted May 14, 2006 and Felix welcome to te listserv, my saving grace! I have 4 daughters, my youngest Amelie is 16 months old with charge, she has an ASD to do, PDA ligated, Cardiomyopathy, bilateral optic nerve Colobomas, profoundly deaf, GJ fed, aspirates frequently, reflux disease, nissen fundoplication surgery, severe hypotonia very floppy, absent semi circular canals, facial palsy, failed videofluroscopy. In her 16 months she has been home for only 4 months, so the roller coaster you describe rings many alarm bells to me, but its all worth the tears and joy, shes adorable, gorgeous just like me!!! good luck with Felix, take one day at a time on the ward thats my only advice, because our children are so complex and unpredictable, some days Amelie would look fantastic so they would extubate, and within hours she would have strider and be back on the vent, they just sometimes need longer. all the best Lesley Amelie and Fam (UK) > Ellen, > I love you, too!!! > big face smile to you. > pam > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 2006 Report Share Posted May 14, 2006 Ellen I also love you lots and lots and amelie sends you hugs, not had chance to catch up with you lately, but I know you are there, keep smiling love les xx Amelie xx > Ellen, > I love you, too!!! > big face smile to you. > pam > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 2006 Report Share Posted May 14, 2006 Ellen I also love you lots and lots and amelie sends you hugs, not had chance to catch up with you lately, but I know you are there, keep smiling love les xx Amelie xx > Ellen, > I love you, too!!! > big face smile to you. > pam > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 2006 Report Share Posted May 14, 2006 Hi Pam, We live in Acton, I delivered at Emerson Hospital in Boston. Dr. Mark Puder is his surgeon, Dr. Kimsey is ORL. we have the rotating staff of neonatologists at the NICU here so he's seen a bunch of them (Dr. Tai Tran from winchester hospital, Dr. Ivana Culic and lots of fellows), Dr. Loeb for Endocrinology, Dr. Fligor for audiology, I can't remember who from GI. Its a little frustrating because other than the specialities, the " general " docs are always changing and I don't get the sense any of them has a ton of experience with Charge. If you can refer some that have Charge experience that would be great! Thanks, > > Hi , > I can't help you with this surgery, because I don't have a CHARGE child or experience with this surgery, but there will be many people who will come forward. > > Where in Boston are you? Who are your doctors at Children " s? I ask because I work at the Perkins School for the Blind in Watertown, in the Deafblind Program where we have many CHARGE kids. There are also several parents on this list from MA and RI and CT. > > Good luck and if you need physican referrals, holler!!! There are several good ones at Children's who know CHARGE. Also, as your little one gets older and you are looking for Early Intervention, etc., > holler again!! > > In the meantime good luck and welcome. > > pam ryan > licensed educational psychologist > perkins school for the blind > watertown, ma 02472 > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 2006 Report Share Posted May 14, 2006 Krystin, Welcome to the list. Most of all happy Mother's Day and congratulations on being blessed by Felix. I have a daughter who has CHARGE that is 21 years old. She has the Coloboma, coanal-atresia, submucus cleft, PDA, kidney, hearing impairment, reflux, and almost all the other stuff that goes with CHARGE. Although she has almost everything we are lucky in that she only has part of each. She is now classified as mild. When she was born we were told some pretty horrific news such as she'd never walk or talk. She's overcome many obstacles. There are some things we have just had to accept and others we've had to fight through. CHARGE is a lifelong disability but one that shows the wonderful blessings life has to offer. She continues to do what many say she can't or won't. She just seems to find her own way to do things. We lived in CT always and have moved to MA a couple of years ago for a better life for her as an adult. As a matter of fact we'll be at Boston Children's this Thursday and Friday. If you would like any visitors just let me know. It is so much better when you meet other people who understand. Patty wasn't diagnosed with CHARGE till she was 14 so we spent all those years alone. When she got diagnosed our world made so much more sense. We met other families who at first were strangers but within moments I've felt a depth of understanding and feelings that I've searched for in others and never found. Through Patty I've made some really remarkable unique relationships I never would have had otherwise. Hey, this list is one of those. There are people here who I feel know my heart as others just can't understand. You'll see what I mean soon enough. Have you looked at the CHARGE Foundation website? Do you have the manual and the articles from the medical journal? There's so much information for you. You can also get the new parent packet from the foundation. Call n or Meg. They're just wonderful. Wishing you all the best and let me know if you'd like to meet. Once again, Happy Mother's Day. Bonnie, Mom to Kris 23, Patty CHARGE 21 and wife to Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 2006 Report Share Posted May 14, 2006 Krystin, Welcome to the list. Most of all happy Mother's Day and congratulations on being blessed by Felix. I have a daughter who has CHARGE that is 21 years old. She has the Coloboma, coanal-atresia, submucus cleft, PDA, kidney, hearing impairment, reflux, and almost all the other stuff that goes with CHARGE. Although she has almost everything we are lucky in that she only has part of each. She is now classified as mild. When she was born we were told some pretty horrific news such as she'd never walk or talk. She's overcome many obstacles. There are some things we have just had to accept and others we've had to fight through. CHARGE is a lifelong disability but one that shows the wonderful blessings life has to offer. She continues to do what many say she can't or won't. She just seems to find her own way to do things. We lived in CT always and have moved to MA a couple of years ago for a better life for her as an adult. As a matter of fact we'll be at Boston Children's this Thursday and Friday. If you would like any visitors just let me know. It is so much better when you meet other people who understand. Patty wasn't diagnosed with CHARGE till she was 14 so we spent all those years alone. When she got diagnosed our world made so much more sense. We met other families who at first were strangers but within moments I've felt a depth of understanding and feelings that I've searched for in others and never found. Through Patty I've made some really remarkable unique relationships I never would have had otherwise. Hey, this list is one of those. There are people here who I feel know my heart as others just can't understand. You'll see what I mean soon enough. Have you looked at the CHARGE Foundation website? Do you have the manual and the articles from the medical journal? There's so much information for you. You can also get the new parent packet from the foundation. Call n or Meg. They're just wonderful. Wishing you all the best and let me know if you'd like to meet. Once again, Happy Mother's Day. Bonnie, Mom to Kris 23, Patty CHARGE 21 and wife to Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2006 Report Share Posted May 15, 2006 Hi Bonnie, Happy Mother's Day to you as well. Thanks so much for your response. I would love to get together this week. I'm in the NICU every day at Children's. Let me know when and where you'd like to meet. Look forward to meeting you! > > Krystin, > > Welcome to the list. Most of all happy Mother's Day and congratulations on > being blessed by Felix. I have a daughter who has CHARGE that is 21 years > old. She has the Coloboma, coanal-atresia, submucus cleft, PDA, kidney, > hearing impairment, reflux, and almost all the other stuff that goes with CHARGE. > Although she has almost everything we are lucky in that she only has part of > each. She is now classified as mild. When she was born we were told some > pretty horrific news such as she'd never walk or talk. She's overcome many > obstacles. There are some things we have just had to accept and others we've > had to fight through. CHARGE is a lifelong disability but one that shows the > wonderful blessings life has to offer. She continues to do what many say she > can't or won't. She just seems to find her own way to do things. > > We lived in CT always and have moved to MA a couple of years ago for a > better life for her as an adult. As a matter of fact we'll be at Boston > Children's this Thursday and Friday. If you would like any visitors just let me know. > It is so much better when you meet other people who understand. Patty > wasn't diagnosed with CHARGE till she was 14 so we spent all those years alone. > When she got diagnosed our world made so much more sense. We met other > families who at first were strangers but within moments I've felt a depth of > understanding and feelings that I've searched for in others and never found. > Through Patty I've made some really remarkable unique relationships I never would > have had otherwise. Hey, this list is one of those. There are people here > who I feel know my heart as others just can't understand. You'll see what I > mean soon enough. > > Have you looked at the CHARGE Foundation website? Do you have the manual > and the articles from the medical journal? There's so much information for > you. You can also get the new parent packet from the foundation. Call n > or Meg. They're just wonderful. > > Wishing you all the best and let me know if you'd like to meet. > > Once again, Happy Mother's Day. > > > > Bonnie, Mom to Kris 23, Patty CHARGE 21 and wife to > > > Quote Link to comment Share on other sites More sharing options...
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