Guest guest Posted February 27, 2006 Report Share Posted February 27, 2006 HI Sue, welcome to the group, you will find so much support and information here. There is no question the beginning is rough. But you will find that CHARGE children are the most loving and reslient children. My daughter, is 10, we live on Long Island. is followed mainly at Columbia Babies and NYU in NYC. She was trached until 2 years ago. She still has a feeding tube. If it wasn't for the trach I am not sure she would have made it. It was a big decision to put hers in. She was still in the NICU at the time and it really scared us. But it is now out! Feel free to contact me if you would like to talk more. Cathie, mom to Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2006 Report Share Posted February 27, 2006 Dear Sue , I am mom to JO-JO 2 & 1/2 CHARGER ,one of the most beautiful I have ever known , open heart, he has been trached since 8 months and almost completely deaf & blind, He has a 4 year old & a 1year old sister .We have all adjusted in ways always as a family, we keep our boundries with others and their opinions,I rarely write here, but I was moved by you. My thoughts are with you and your baby. I found a lot of comfort being with my son all the time and I pumped for 6 months,it was one way i could help, Today he is a happy boy , but yes it is a long strange, growing expierience,. Best thoughts, Gwendelyn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2006 Report Share Posted February 28, 2006 cathis iw ant to echo ur wordds lol yes very rough very rough in soem cases but very inspiring to just enjoy ur little one and she will amaze you in so many ways hugs ellen 20 year old charger in aus > > HI Sue, welcome to the group, you will find so much support and > information > here. > There is no question the beginning is rough. But you will find > that CHARGE > children are the most loving and reslient children. > My daughter, is 10, we live on Long Island. is > followed mainly > at Columbia Babies and NYU in NYC. She was trached until 2 > years ago. She > still has a feeding tube. If it wasn't for the trach I am not sure she > would > have made it. It was a big decision to put hers in. She was still in > the > NICU at the time and it really scared us. But it is now out! > > Feel free to contact me if you would like to talk more. > Cathie, mom to > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2006 Report Share Posted February 28, 2006 Hi Sue-- Welcome to our charge family. There are a few NJ families here who post more often than I do--and who probably live closer to you than I do--but if you'd like to talk, just give me a call. Joanne mom to Eddie-6 Edison, NJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2006 Report Share Posted February 28, 2006 Ellen, you are an amazing person!!! pam Pamela J. , M.A., CAGS Licensed Educational Psychologist Perkins School for the Blind, Deafblind Program 175 North Beacon St. Watertown, MA 02472 > ---------- > From: CHARGE on behalf of ellen howe > Reply To: CHARGE > Sent: Monday, February 27, 2006 11:16 PM > To: CHARGE > Subject: Re: Just had a baby with charge > > cathis iw ant to echo ur wordds lol yes very rough very rough in soem cases > but very inspiring to just enjoy ur little one and she will amaze you in so > many ways hugs ellen 20 year old charger in aus > > > > > > HI Sue, welcome to the group, you will find so much support and > > information > > here. > > There is no question the beginning is rough. But you will find > > that CHARGE > > children are the most loving and reslient children. > > My daughter, is 10, we live on Long Island. is > > followed mainly > > at Columbia Babies and NYU in NYC. She was trached until 2 > > years ago. She > > still has a feeding tube. If it wasn't for the trach I am not sure she > > would > > have made it. It was a big decision to put hers in. She was still in > > the > > NICU at the time and it really scared us. But it is now out! > > > > Feel free to contact me if you would like to talk more. > > Cathie, mom to > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2006 Report Share Posted February 28, 2006 Thank you so much for your words of comfort and encouragement. Although in my heart, I sometimes still puzzle if one day when I looked at Keira, if I would say to her that I should have fought for to let you go instead of seeing you having such a tough life. I don't know if any of you ever had that thought. Sue Re: Just had a baby with charge > > cathis iw ant to echo ur wordds lol yes very rough very rough in soem cases > but very inspiring to just enjoy ur little one and she will amaze you in so > many ways hugs ellen 20 year old charger in aus > > > > > > HI Sue, welcome to the group, you will find so much support and > > information > > here. > > There is no question the beginning is rough. But you will find > > that CHARGE > > children are the most loving and reslient children. > > My daughter, is 10, we live on Long Island. is > > followed mainly > > at Columbia Babies and NYU in NYC. She was trached until 2 > > years ago. She > > still has a feeding tube. If it wasn't for the trach I am not sure she > > would > > have made it. It was a big decision to put hers in. She was still in > > the > > NICU at the time and it really scared us. But it is now out! > > > > Feel free to contact me if you would like to talk more. > > Cathie, mom to > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2006 Report Share Posted February 28, 2006 Hi Joanne, That is great. I sure do need tons of help and support to get this lift time project started. Is there any good time I can call you? Sue Re: Just had a baby with charge Hi Sue-- Welcome to our charge family. There are a few NJ families here who post more often than I do--and who probably live closer to you than I do--but if you'd like to talk, just give me a call. Joanne mom to Eddie-6 Edison, NJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2006 Report Share Posted February 28, 2006 Sue, Welcome to the CHARGE family. For those of us on the list, our children have survived those early medical days and become such courageous, joyful, wise people that I venture to guess that most of us would say to have them here and to experience life with them is so well worth any pain they or we might have experienced. The joy is so much greater and it seems that our children are joyful as well, certainly not miserable people. Our children have been able to get past it. There are so many parents here who have had to face these questions head on - we had no idea that it was possible for a baby to endure so much medically and still live to be such a vibrant person. Talk about awe! There are also many parents who have recently or who are still going through these medical times, and I hope you will connect with them. I hope Amy does not mind, but I hope you go to the blog she created to keep family and friends updated about her son Max. I know you will relate to the ups and downs, but also find hope in that Max is now at home and doing well!!!!! www.maxupdate.blogspot.com Then I feel compelled to also bring up the small chance we all fear, is our child one of the few who will not make it past those early medical troubles? I know we all have the fear, and we all wonder if our child's life will be worth living, because it all sounds so bad " on paper " when you list all that is wrong initially; then somehow we make it through, and our lives become our lives - filled with joy and pain, and ups and downs like all families have, ours just involve CHARGE. I do not know which way it will be with your child, but I want to offer you that if your child is strong enough to make it through medically then I have not yet met anyone who did not think it was worth the fight. Kim L Mom to Dylan who is 9 1/2 with CHARGE, Kayla 15, and Tyler nearly 18. > Thank you so much for your words of comfort and encouragement. Although in my > heart, I sometimes still puzzle if one day when I looked at Keira, if I would > say to her that I should have fought for to let you go instead of seeing you > having such a tough life. I don't know if any of you ever had that thought. > > Sue > > Re: Just had a baby with charge >> >> cathis iw ant to echo ur wordds lol yes very rough very rough in soem cases >> but very inspiring to just enjoy ur little one and she will amaze you in so >> many ways hugs ellen 20 year old charger in aus >> >> >>> >>> HI Sue, welcome to the group, you will find so much support and >>> information >>> here. >>> There is no question the beginning is rough. But you will find >>> that CHARGE >>> children are the most loving and reslient children. >>> My daughter, is 10, we live on Long Island. is >>> followed mainly >>> at Columbia Babies and NYU in NYC. She was trached until 2 >>> years ago. She >>> still has a feeding tube. If it wasn't for the trach I am not sure she >>> would >>> have made it. It was a big decision to put hers in. She was still in >>> the >>> NICU at the time and it really scared us. But it is now out! >>> >>> Feel free to contact me if you would like to talk more. >>> Cathie, mom to >>> >>> >>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2006 Report Share Posted February 28, 2006 Welcome Sue, I have an 8 year old with CHARGE. He got a trach at 1 month for trachiomalacia. It was a scary idea to me and my husband but it made my sons quality of life much better. He no longer had to struggle to breath as bad. You have found a great place for support and answers to your many questions. a mom to 8yr CHARGEr and Quintin 5 yr seizure prone --- newchargemom wrote: > Hi Everyone, > > I just started reading some e-mails in this group. > All your e-mails > sound like life is so normal and there can still be > time for > relaxation. It is nice to see that. > > I just had a baby girl, Keira, two months ago who is > a charge baby. > She came with inner ear malformation, possible > swallowing > difficulties and airway issue (first was trachea > web, then sugotal > stenosis, and now the dr thinks it is > tracheomalacia). She is still > in the NICU. > > I think I am still in a stage of quite overwhelming > and unsure what I > should do next. Doctor wants to give her a trach, > and I am not sure > if the trach will come off one day thinking about > charge is so > complicated. I have been surfing on web to see how > life can be for a > charge child. And deep down I feel that a painful > and rough journey > is just started for her. > > I look forward to chat with you. Maybe I can > eventually find a > balance from this life change. By the way, we live > in north New > Jersey in US. Hopefully I can find some of you who > may be near by. > > Sue > > > > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2006 Report Share Posted February 28, 2006 Hi a, Does still need the trach now? ENT said the trach usually off by 36 to 60 moms. I have been doubting if this can be true for charge child. Thanks. --Sue Re: Just had a baby with charge Welcome Sue, I have an 8 year old with CHARGE. He got a trach at 1 month for trachiomalacia. It was a scary idea to me and my husband but it made my sons quality of life much better. He no longer had to struggle to breath as bad. You have found a great place for support and answers to your many questions. a mom to 8yr CHARGEr and Quintin 5 yr seizure prone --- newchargemom wrote: > Hi Everyone, > > I just started reading some e-mails in this group. > All your e-mails > sound like life is so normal and there can still be > time for > relaxation. It is nice to see that. > > I just had a baby girl, Keira, two months ago who is > a charge baby. > She came with inner ear malformation, possible > swallowing > difficulties and airway issue (first was trachea > web, then sugotal > stenosis, and now the dr thinks it is > tracheomalacia). She is still > in the NICU. > > I think I am still in a stage of quite overwhelming > and unsure what I > should do next. Doctor wants to give her a trach, > and I am not sure > if the trach will come off one day thinking about > charge is so > complicated. I have been surfing on web to see how > life can be for a > charge child. And deep down I feel that a painful > and rough journey > is just started for her. > > I look forward to chat with you. Maybe I can > eventually find a > balance from this life change. By the way, we live > in north New > Jersey in US. Hopefully I can find some of you who > may be near by. > > Sue > > > > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2006 Report Share Posted February 28, 2006 Hi a, Does still need the trach now? ENT said the trach usually off by 36 to 60 moms. I have been doubting if this can be true for charge child. Thanks. --Sue Re: Just had a baby with charge Welcome Sue, I have an 8 year old with CHARGE. He got a trach at 1 month for trachiomalacia. It was a scary idea to me and my husband but it made my sons quality of life much better. He no longer had to struggle to breath as bad. You have found a great place for support and answers to your many questions. a mom to 8yr CHARGEr and Quintin 5 yr seizure prone --- newchargemom wrote: > Hi Everyone, > > I just started reading some e-mails in this group. > All your e-mails > sound like life is so normal and there can still be > time for > relaxation. It is nice to see that. > > I just had a baby girl, Keira, two months ago who is > a charge baby. > She came with inner ear malformation, possible > swallowing > difficulties and airway issue (first was trachea > web, then sugotal > stenosis, and now the dr thinks it is > tracheomalacia). She is still > in the NICU. > > I think I am still in a stage of quite overwhelming > and unsure what I > should do next. Doctor wants to give her a trach, > and I am not sure > if the trach will come off one day thinking about > charge is so > complicated. I have been surfing on web to see how > life can be for a > charge child. And deep down I feel that a painful > and rough journey > is just started for her. > > I look forward to chat with you. Maybe I can > eventually find a > balance from this life change. By the way, we live > in north New > Jersey in US. Hopefully I can find some of you who > may be near by. > > Sue > > > > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2006 Report Share Posted February 28, 2006 For he is still trach dependent. His ENT is in no rush to remove the trach and neither am I. He still asperates his secreations. The one thing I will sugest is that if your daughter does get a trach you refuse to leave the hospital until you are approved for home nursing care and have it set up. It has been a life saver for us because your child will need 24 hour care and that is too much for you to do without outside help. It is a little hard to get used to in the beginning but we have had them for 8 years so it is not so hard. I know that others who have had thachs have only had them a little while. Good luck with your desision it is a hard one but what ever you do follow your heart. a mom to 8yr CHARGEr and Quintin 5yr seizure prone --- Kongyin So wrote: > Hi a, Does still need the trach now? > ENT said the trach usually off by 36 to 60 moms. I > have been doubting if this can be true for charge > child. Thanks. --Sue > > Re: Just had a baby with charge > > > Welcome Sue, > I have an 8 year old with CHARGE. He got a trach at > 1 > month for trachiomalacia. It was a scary idea to me > and my husband but it made my sons quality of life > much better. He no longer had to struggle to breath > as > bad. You have found a great place for support and > answers to your many questions. > a mom to 8yr CHARGEr and Quintin 5 yr > seizure prone > > --- newchargemom wrote: > > > Hi Everyone, > > > > I just started reading some e-mails in this group. > > All your e-mails > > sound like life is so normal and there can still > be > > time for > > relaxation. It is nice to see that. > > > > I just had a baby girl, Keira, two months ago who > is > > a charge baby. > > She came with inner ear malformation, possible > > swallowing > > difficulties and airway issue (first was trachea > > web, then sugotal > > stenosis, and now the dr thinks it is > > tracheomalacia). She is still > > in the NICU. > > > > I think I am still in a stage of quite > overwhelming > > and unsure what I > > should do next. Doctor wants to give her a trach, > > and I am not sure > > if the trach will come off one day thinking about > > charge is so > > complicated. I have been surfing on web to see > how > > life can be for a > > charge child. And deep down I feel that a painful > > and rough journey > > is just started for her. > > > > I look forward to chat with you. Maybe I can > > eventually find a > > balance from this life change. By the way, we live > > in north New > > Jersey in US. Hopefully I can find some of you > who > > may be near by. > > > > Sue > > > > > > > > > > > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2006 Report Share Posted February 28, 2006 For he is still trach dependent. His ENT is in no rush to remove the trach and neither am I. He still asperates his secreations. The one thing I will sugest is that if your daughter does get a trach you refuse to leave the hospital until you are approved for home nursing care and have it set up. It has been a life saver for us because your child will need 24 hour care and that is too much for you to do without outside help. It is a little hard to get used to in the beginning but we have had them for 8 years so it is not so hard. I know that others who have had thachs have only had them a little while. Good luck with your desision it is a hard one but what ever you do follow your heart. a mom to 8yr CHARGEr and Quintin 5yr seizure prone --- Kongyin So wrote: > Hi a, Does still need the trach now? > ENT said the trach usually off by 36 to 60 moms. I > have been doubting if this can be true for charge > child. Thanks. --Sue > > Re: Just had a baby with charge > > > Welcome Sue, > I have an 8 year old with CHARGE. He got a trach at > 1 > month for trachiomalacia. It was a scary idea to me > and my husband but it made my sons quality of life > much better. He no longer had to struggle to breath > as > bad. You have found a great place for support and > answers to your many questions. > a mom to 8yr CHARGEr and Quintin 5 yr > seizure prone > > --- newchargemom wrote: > > > Hi Everyone, > > > > I just started reading some e-mails in this group. > > All your e-mails > > sound like life is so normal and there can still > be > > time for > > relaxation. It is nice to see that. > > > > I just had a baby girl, Keira, two months ago who > is > > a charge baby. > > She came with inner ear malformation, possible > > swallowing > > difficulties and airway issue (first was trachea > > web, then sugotal > > stenosis, and now the dr thinks it is > > tracheomalacia). She is still > > in the NICU. > > > > I think I am still in a stage of quite > overwhelming > > and unsure what I > > should do next. Doctor wants to give her a trach, > > and I am not sure > > if the trach will come off one day thinking about > > charge is so > > complicated. I have been surfing on web to see > how > > life can be for a > > charge child. And deep down I feel that a painful > > and rough journey > > is just started for her. > > > > I look forward to chat with you. Maybe I can > > eventually find a > > balance from this life change. By the way, we live > > in north New > > Jersey in US. Hopefully I can find some of you > who > > may be near by. > > > > Sue > > > > > > > > > > > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2006 Report Share Posted February 28, 2006 Sue, My baby was in the hospital for the first six months and the doctors often discussed him getting a trach due to his preemie lungs and some CHARGE related breathing issues. He was having a very difficult time. We pushed forward with his heart surgery b/c they decided he needed the trach, but then post surgery he was doing better and now he is home on O2...but not a trach. SOME TIMES the kiddos can grow out of needing one...you never know. But what I do remember very clearly is that the docs always reminded me that when a child needs one, you will see dramatic improvement developmentally once they can breathe easier and that they have yet to meet a parent who regrets getting a trach. If you want to see my lil' guy and have some hope for how well they do post hospital, my blog is maxupdate.blogspot.com. Hope it can provide you some encouragement!!! Amy Victor Villarreal wrote: For he is still trach dependent. His ENT is in no rush to remove the trach and neither am I. He still asperates his secreations. The one thing I will sugest is that if your daughter does get a trach you refuse to leave the hospital until you are approved for home nursing care and have it set up. It has been a life saver for us because your child will need 24 hour care and that is too much for you to do without outside help. It is a little hard to get used to in the beginning but we have had them for 8 years so it is not so hard. I know that others who have had thachs have only had them a little while. Good luck with your desision it is a hard one but what ever you do follow your heart. a mom to 8yr CHARGEr and Quintin 5yr seizure prone --- Kongyin So wrote: > Hi a, Does still need the trach now? > ENT said the trach usually off by 36 to 60 moms. I > have been doubting if this can be true for charge > child. Thanks. --Sue > > Re: Just had a baby with charge > > > Welcome Sue, > I have an 8 year old with CHARGE. He got a trach at > 1 > month for trachiomalacia. It was a scary idea to me > and my husband but it made my sons quality of life > much better. He no longer had to struggle to breath > as > bad. You have found a great place for support and > answers to your many questions. > a mom to 8yr CHARGEr and Quintin 5 yr > seizure prone > > --- newchargemom wrote: > > > Hi Everyone, > > > > I just started reading some e-mails in this group. > > All your e-mails > > sound like life is so normal and there can still > be > > time for > > relaxation. It is nice to see that. > > > > I just had a baby girl, Keira, two months ago who > is > > a charge baby. > > She came with inner ear malformation, possible > > swallowing > > difficulties and airway issue (first was trachea > > web, then sugotal > > stenosis, and now the dr thinks it is > > tracheomalacia). She is still > > in the NICU. > > > > I think I am still in a stage of quite > overwhelming > > and unsure what I > > should do next. Doctor wants to give her a trach, > > and I am not sure > > if the trach will come off one day thinking about > > charge is so > > complicated. I have been surfing on web to see > how > > life can be for a > > charge child. And deep down I feel that a painful > > and rough journey > > is just started for her. > > > > I look forward to chat with you. Maybe I can > > eventually find a > > balance from this life change. By the way, we live > > in north New > > Jersey in US. Hopefully I can find some of you > who > > may be near by. > > > > Sue > > > > > > > > > > > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2006 Report Share Posted February 28, 2006 Sue, My baby was in the hospital for the first six months and the doctors often discussed him getting a trach due to his preemie lungs and some CHARGE related breathing issues. He was having a very difficult time. We pushed forward with his heart surgery b/c they decided he needed the trach, but then post surgery he was doing better and now he is home on O2...but not a trach. SOME TIMES the kiddos can grow out of needing one...you never know. But what I do remember very clearly is that the docs always reminded me that when a child needs one, you will see dramatic improvement developmentally once they can breathe easier and that they have yet to meet a parent who regrets getting a trach. If you want to see my lil' guy and have some hope for how well they do post hospital, my blog is maxupdate.blogspot.com. Hope it can provide you some encouragement!!! Amy Victor Villarreal wrote: For he is still trach dependent. His ENT is in no rush to remove the trach and neither am I. He still asperates his secreations. The one thing I will sugest is that if your daughter does get a trach you refuse to leave the hospital until you are approved for home nursing care and have it set up. It has been a life saver for us because your child will need 24 hour care and that is too much for you to do without outside help. It is a little hard to get used to in the beginning but we have had them for 8 years so it is not so hard. I know that others who have had thachs have only had them a little while. Good luck with your desision it is a hard one but what ever you do follow your heart. a mom to 8yr CHARGEr and Quintin 5yr seizure prone --- Kongyin So wrote: > Hi a, Does still need the trach now? > ENT said the trach usually off by 36 to 60 moms. I > have been doubting if this can be true for charge > child. Thanks. --Sue > > Re: Just had a baby with charge > > > Welcome Sue, > I have an 8 year old with CHARGE. He got a trach at > 1 > month for trachiomalacia. It was a scary idea to me > and my husband but it made my sons quality of life > much better. He no longer had to struggle to breath > as > bad. You have found a great place for support and > answers to your many questions. > a mom to 8yr CHARGEr and Quintin 5 yr > seizure prone > > --- newchargemom wrote: > > > Hi Everyone, > > > > I just started reading some e-mails in this group. > > All your e-mails > > sound like life is so normal and there can still > be > > time for > > relaxation. It is nice to see that. > > > > I just had a baby girl, Keira, two months ago who > is > > a charge baby. > > She came with inner ear malformation, possible > > swallowing > > difficulties and airway issue (first was trachea > > web, then sugotal > > stenosis, and now the dr thinks it is > > tracheomalacia). She is still > > in the NICU. > > > > I think I am still in a stage of quite > overwhelming > > and unsure what I > > should do next. Doctor wants to give her a trach, > > and I am not sure > > if the trach will come off one day thinking about > > charge is so > > complicated. I have been surfing on web to see > how > > life can be for a > > charge child. And deep down I feel that a painful > > and rough journey > > is just started for her. > > > > I look forward to chat with you. Maybe I can > > eventually find a > > balance from this life change. By the way, we live > > in north New > > Jersey in US. Hopefully I can find some of you > who > > may be near by. > > > > Sue > > > > > > > > > > > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2006 Report Share Posted February 28, 2006 Amy, What is O2? How does it work without the trach? Thks. --Sue Re: Just had a baby with charge > > > Welcome Sue, > I have an 8 year old with CHARGE. He got a trach at > 1 > month for trachiomalacia. It was a scary idea to me > and my husband but it made my sons quality of life > much better. He no longer had to struggle to breath > as > bad. You have found a great place for support and > answers to your many questions. > a mom to 8yr CHARGEr and Quintin 5 yr > seizure prone > > --- newchargemom wrote: > > > Hi Everyone, > > > > I just started reading some e-mails in this group. > > All your e-mails > > sound like life is so normal and there can still > be > > time for > > relaxation. It is nice to see that. > > > > I just had a baby girl, Keira, two months ago who > is > > a charge baby. > > She came with inner ear malformation, possible > > swallowing > > difficulties and airway issue (first was trachea > > web, then sugotal > > stenosis, and now the dr thinks it is > > tracheomalacia). She is still > > in the NICU. > > > > I think I am still in a stage of quite > overwhelming > > and unsure what I > > should do next. Doctor wants to give her a trach, > > and I am not sure > > if the trach will come off one day thinking about > > charge is so > > complicated. I have been surfing on web to see > how > > life can be for a > > charge child. And deep down I feel that a painful > > and rough journey > > is just started for her. > > > > I look forward to chat with you. Maybe I can > > eventually find a > > balance from this life change. By the way, we live > > in north New > > Jersey in US. Hopefully I can find some of you > who > > may be near by. > > > > Sue > > > > > > > > > > > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2006 Report Share Posted February 28, 2006 I was thinking about the 24 hr nursing care, but then my insurance guide says only cover 60 days per year. Is there another way to get nursing care without expensive charge? Thks. --Sue Re: Just had a baby with charge > > > Welcome Sue, > I have an 8 year old with CHARGE. He got a trach at > 1 > month for trachiomalacia. It was a scary idea to me > and my husband but it made my sons quality of life > much better. He no longer had to struggle to breath > as > bad. You have found a great place for support and > answers to your many questions. > a mom to 8yr CHARGEr and Quintin 5 yr > seizure prone > > --- newchargemom wrote: > > > Hi Everyone, > > > > I just started reading some e-mails in this group. > > All your e-mails > > sound like life is so normal and there can still > be > > time for > > relaxation. It is nice to see that. > > > > I just had a baby girl, Keira, two months ago who > is > > a charge baby. > > She came with inner ear malformation, possible > > swallowing > > difficulties and airway issue (first was trachea > > web, then sugotal > > stenosis, and now the dr thinks it is > > tracheomalacia). She is still > > in the NICU. > > > > I think I am still in a stage of quite > overwhelming > > and unsure what I > > should do next. Doctor wants to give her a trach, > > and I am not sure > > if the trach will come off one day thinking about > > charge is so > > complicated. I have been surfing on web to see > how > > life can be for a > > charge child. And deep down I feel that a painful > > and rough journey > > is just started for her. > > > > I look forward to chat with you. Maybe I can > > eventually find a > > balance from this life change. By the way, we live > > in north New > > Jersey in US. Hopefully I can find some of you > who > > may be near by. > > > > Sue > > > > > > > > > > > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2006 Report Share Posted February 28, 2006 I was thinking about the 24 hr nursing care, but then my insurance guide says only cover 60 days per year. Is there another way to get nursing care without expensive charge? Thks. --Sue Re: Just had a baby with charge > > > Welcome Sue, > I have an 8 year old with CHARGE. He got a trach at > 1 > month for trachiomalacia. It was a scary idea to me > and my husband but it made my sons quality of life > much better. He no longer had to struggle to breath > as > bad. You have found a great place for support and > answers to your many questions. > a mom to 8yr CHARGEr and Quintin 5 yr > seizure prone > > --- newchargemom wrote: > > > Hi Everyone, > > > > I just started reading some e-mails in this group. > > All your e-mails > > sound like life is so normal and there can still > be > > time for > > relaxation. It is nice to see that. > > > > I just had a baby girl, Keira, two months ago who > is > > a charge baby. > > She came with inner ear malformation, possible > > swallowing > > difficulties and airway issue (first was trachea > > web, then sugotal > > stenosis, and now the dr thinks it is > > tracheomalacia). She is still > > in the NICU. > > > > I think I am still in a stage of quite > overwhelming > > and unsure what I > > should do next. Doctor wants to give her a trach, > > and I am not sure > > if the trach will come off one day thinking about > > charge is so > > complicated. I have been surfing on web to see > how > > life can be for a > > charge child. And deep down I feel that a painful > > and rough journey > > is just started for her. > > > > I look forward to chat with you. Maybe I can > > eventually find a > > balance from this life change. By the way, we live > > in north New > > Jersey in US. Hopefully I can find some of you > who > > may be near by. > > > > Sue > > > > > > > > > > > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2006 Report Share Posted February 28, 2006 Sue, Welcome to the list. You are in the rough stage right now - and even though all of our lives seem so " normal " etc - that doesn't mean we all haven't been exactly where you are right now. Believe it or not, things do settle down and you will acquire a new meaning for the word " normal " . And yes, there are definitely families in NJ! I'm in New Brunswick but the wrong one - I'm in New Brunswick, Canada! Weir Visit the Weir family online: http://ca.geocities.com/weirfamilyrogers Home: lisaweir@... Work: lisa.weir@... Phone: Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2006 Report Share Posted February 28, 2006 Sue, Welcome to the list. You are in the rough stage right now - and even though all of our lives seem so " normal " etc - that doesn't mean we all haven't been exactly where you are right now. Believe it or not, things do settle down and you will acquire a new meaning for the word " normal " . And yes, there are definitely families in NJ! I'm in New Brunswick but the wrong one - I'm in New Brunswick, Canada! Weir Visit the Weir family online: http://ca.geocities.com/weirfamilyrogers Home: lisaweir@... Work: lisa.weir@... Phone: Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2006 Report Share Posted February 28, 2006 Sue, Welcome to the list. You are in the rough stage right now - and even though all of our lives seem so " normal " etc - that doesn't mean we all haven't been exactly where you are right now. Believe it or not, things do settle down and you will acquire a new meaning for the word " normal " . And yes, there are definitely families in NJ! I'm in New Brunswick but the wrong one - I'm in New Brunswick, Canada! Weir Visit the Weir family online: http://ca.geocities.com/weirfamilyrogers Home: lisaweir@... Work: lisa.weir@... Phone: Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2006 Report Share Posted February 28, 2006 Look into seeing if your child can qualify for medicaid. In Utah there is a technology dependent waiver that does not consider family income only if the child falls under tech dependent. Ask the social worker in the nicu they should be able to help. a mom to 8yr CHARGEr and Quintin 5yr seizure prone --- Kongyin So wrote: > I was thinking about the 24 hr nursing care, but > then my insurance guide says only cover 60 days per > year. Is there another way to get nursing care > without expensive charge? Thks. --Sue > > Re: Just had a baby with charge > > > > > > Welcome Sue, > > I have an 8 year old with CHARGE. He got a trach > at > > 1 > > month for trachiomalacia. It was a scary idea to > me > > and my husband but it made my sons quality of life > > much better. He no longer had to struggle to > breath > > as > > bad. You have found a great place for support and > > answers to your many questions. > > a mom to 8yr CHARGEr and Quintin 5 yr > > seizure prone > > > > --- newchargemom wrote: > > > > > Hi Everyone, > > > > > > I just started reading some e-mails in this > group. > > > All your e-mails > > > sound like life is so normal and there can still > > be > > > time for > > > relaxation. It is nice to see that. > > > > > > I just had a baby girl, Keira, two months ago > who > > is > > > a charge baby. > > > She came with inner ear malformation, possible > > > swallowing > > > difficulties and airway issue (first was trachea > > > web, then sugotal > > > stenosis, and now the dr thinks it is > > > tracheomalacia). She is still > > > in the NICU. > > > > > > I think I am still in a stage of quite > > overwhelming > > > and unsure what I > > > should do next. Doctor wants to give her a > trach, > > > and I am not sure > > > if the trach will come off one day thinking > about > > > charge is so > > > complicated. I have been surfing on web to see > > how > > > life can be for a > > > charge child. And deep down I feel that a > painful > > > and rough journey > > > is just started for her. > > > > > > I look forward to chat with you. Maybe I can > > > eventually find a > > > balance from this life change. By the way, we > live > > > in north New > > > Jersey in US. Hopefully I can find some of you > > who > > > may be near by. > > > > > > Sue > > > > > > > > > > > > > > > > > > > > > > > > __________________________________________________ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2006 Report Share Posted February 28, 2006 Look into seeing if your child can qualify for medicaid. In Utah there is a technology dependent waiver that does not consider family income only if the child falls under tech dependent. Ask the social worker in the nicu they should be able to help. a mom to 8yr CHARGEr and Quintin 5yr seizure prone --- Kongyin So wrote: > I was thinking about the 24 hr nursing care, but > then my insurance guide says only cover 60 days per > year. Is there another way to get nursing care > without expensive charge? Thks. --Sue > > Re: Just had a baby with charge > > > > > > Welcome Sue, > > I have an 8 year old with CHARGE. He got a trach > at > > 1 > > month for trachiomalacia. It was a scary idea to > me > > and my husband but it made my sons quality of life > > much better. He no longer had to struggle to > breath > > as > > bad. You have found a great place for support and > > answers to your many questions. > > a mom to 8yr CHARGEr and Quintin 5 yr > > seizure prone > > > > --- newchargemom wrote: > > > > > Hi Everyone, > > > > > > I just started reading some e-mails in this > group. > > > All your e-mails > > > sound like life is so normal and there can still > > be > > > time for > > > relaxation. It is nice to see that. > > > > > > I just had a baby girl, Keira, two months ago > who > > is > > > a charge baby. > > > She came with inner ear malformation, possible > > > swallowing > > > difficulties and airway issue (first was trachea > > > web, then sugotal > > > stenosis, and now the dr thinks it is > > > tracheomalacia). She is still > > > in the NICU. > > > > > > I think I am still in a stage of quite > > overwhelming > > > and unsure what I > > > should do next. Doctor wants to give her a > trach, > > > and I am not sure > > > if the trach will come off one day thinking > about > > > charge is so > > > complicated. I have been surfing on web to see > > how > > > life can be for a > > > charge child. And deep down I feel that a > painful > > > and rough journey > > > is just started for her. > > > > > > I look forward to chat with you. Maybe I can > > > eventually find a > > > balance from this life change. By the way, we > live > > > in north New > > > Jersey in US. Hopefully I can find some of you > > who > > > may be near by. > > > > > > Sue > > > > > > > > > > > > > > > > > > > > > > > > __________________________________________________ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2006 Report Share Posted February 28, 2006 Sue- When you research the nursing coverage options in your state, don't stop at apparent obstacles. Very often, " no " does not mean " no " when dealing with the state or insurance. If you find a program in your state that seems like it should help but you run into interference, contact your local legislator to see if they can help smooth out the red tape. It is also possible to get your insurance to agree to go beyond the written policy agreement by having doctors write letters etc. Do you have a service coordinator thru the insurance company, the hospital, a state agency... anyone that could help you navigate that? A warning too -- you may have to say that you could not bring your child home without nursing help -- basically that you would leave your child institutionalized without support. Even if you know you would never want to not take your child home, be prepared to express completely the dilemmas you will face in trying to meet his needs 24/7 at home. When you are dealing with legislators or state agencies or insurance companies, it is not the time to present your best face or be invested in your competence as a parent. That is the time to show your greatest vulnerabilities. It can be very hard to do because we all have to feel competent every day. We need to wake up each morning and focus on the positives. But that positive focus can be detrimental to us in some situations. Michele W mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ Re: Just had a baby with charge > > > > > > Welcome Sue, > > I have an 8 year old with CHARGE. He got a trach > at > > 1 > > month for trachiomalacia. It was a scary idea to > me > > and my husband but it made my sons quality of life > > much better. He no longer had to struggle to > breath > > as > > bad. You have found a great place for support and > > answers to your many questions. > > a mom to 8yr CHARGEr and Quintin 5 yr > > seizure prone > > > > --- newchargemom wrote: > > > > > Hi Everyone, > > > > > > I just started reading some e-mails in this > group. > > > All your e-mails > > > sound like life is so normal and there can still > > be > > > time for > > > relaxation. It is nice to see that. > > > > > > I just had a baby girl, Keira, two months ago > who > > is > > > a charge baby. > > > She came with inner ear malformation, possible > > > swallowing > > > difficulties and airway issue (first was trachea > > > web, then sugotal > > > stenosis, and now the dr thinks it is > > > tracheomalacia). She is still > > > in the NICU. > > > > > > I think I am still in a stage of quite > > overwhelming > > > and unsure what I > > > should do next. Doctor wants to give her a > trach, > > > and I am not sure > > > if the trach will come off one day thinking > about > > > charge is so > > > complicated. I have been surfing on web to see > > how > > > life can be for a > > > charge child. And deep down I feel that a > painful > > > and rough journey > > > is just started for her. > > > > > > I look forward to chat with you. Maybe I can > > > eventually find a > > > balance from this life change. By the way, we > live > > > in north New > > > Jersey in US. Hopefully I can find some of you > > who > > > may be near by. > > > > > > Sue > > > > > > > > > > > > > > > > > > > > > > > > __________________________________________________ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2006 Report Share Posted February 28, 2006 Sorry! O2 is oxygen and he gets that via his nasal canula. We still are watching his lungs closely but he managed to slip by without needing the trach...but it was VERY close there for awhile. Kongyin So wrote: Amy, What is O2? How does it work without the trach? Thks. --Sue Re: Just had a baby with charge > > > Welcome Sue, > I have an 8 year old with CHARGE. He got a trach at > 1 > month for trachiomalacia. It was a scary idea to me > and my husband but it made my sons quality of life > much better. He no longer had to struggle to breath > as > bad. You have found a great place for support and > answers to your many questions. > a mom to 8yr CHARGEr and Quintin 5 yr > seizure prone > > --- newchargemom wrote: > > > Hi Everyone, > > > > I just started reading some e-mails in this group. > > All your e-mails > > sound like life is so normal and there can still > be > > time for > > relaxation. It is nice to see that. > > > > I just had a baby girl, Keira, two months ago who > is > > a charge baby. > > She came with inner ear malformation, possible > > swallowing > > difficulties and airway issue (first was trachea > > web, then sugotal > > stenosis, and now the dr thinks it is > > tracheomalacia). She is still > > in the NICU. > > > > I think I am still in a stage of quite > overwhelming > > and unsure what I > > should do next. Doctor wants to give her a trach, > > and I am not sure > > if the trach will come off one day thinking about > > charge is so > > complicated. I have been surfing on web to see > how > > life can be for a > > charge child. And deep down I feel that a painful > > and rough journey > > is just started for her. > > > > I look forward to chat with you. Maybe I can > > eventually find a > > balance from this life change. By the way, we live > > in north New > > Jersey in US. Hopefully I can find some of you > who > > may be near by. > > > > Sue > > > > > > > > > > > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.