Guest guest Posted May 25, 2002 Report Share Posted May 25, 2002 Bradley wrote: > Recently we have had a few good things happen that I want to share with everyone. Yesterday, our daughter Aubrey (3 1/2 years old with charge) was successfully decannulated! She had the trach put in when she was 3 months old. So far things are going well. We thought this day would never come! What great news! We've been there! And about the same time frame for too (3 months to 3 years trached)! You're right - you think it will never come, then it does and - WOW! You might see a noted change in independence with Aubrey - at least we did with . It was like freeing her because she'd also been restricted with CPAP tubing and oxygen. > > We also had a baby girl, , about 2 1/2 months ago. She was born completely healthy. One of the tests that we had during the pregnancy (triple screen) told us that she was high risk for Down's Syndrome, so we were very worried about that and charge. Congratulations! I'm so glad is healthy. Having that worry during the pregnancy had to be a bit " stressful " , to say the least. > > I'm posting this because I hope it can give others hope when they feel like things will never get better. We were there and although we still have other charge issues with Aubrey, things are much, much better now! You will find you won't know what to do with all the time you have free from suctioning and trach care! Actually, you'll probably now have a hard time keeping track of Aubrey. When Krisitn was trached she sounded so noisy, and when it was out I got nervous about where she was because I couldn't hear her! But what a wonderful adjustment to need to make! Congratulations again, on both counts. Friends in CHARGE, Marilyn Ogan Mom of Ken (12, ADD) and (9, CHARGE+) Wife of Rick Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2002 Report Share Posted May 25, 2002 Bradley wrote: > Recently we have had a few good things happen that I want to share with everyone. Yesterday, our daughter Aubrey (3 1/2 years old with charge) was successfully decannulated! She had the trach put in when she was 3 months old. So far things are going well. We thought this day would never come! What great news! We've been there! And about the same time frame for too (3 months to 3 years trached)! You're right - you think it will never come, then it does and - WOW! You might see a noted change in independence with Aubrey - at least we did with . It was like freeing her because she'd also been restricted with CPAP tubing and oxygen. > > We also had a baby girl, , about 2 1/2 months ago. She was born completely healthy. One of the tests that we had during the pregnancy (triple screen) told us that she was high risk for Down's Syndrome, so we were very worried about that and charge. Congratulations! I'm so glad is healthy. Having that worry during the pregnancy had to be a bit " stressful " , to say the least. > > I'm posting this because I hope it can give others hope when they feel like things will never get better. We were there and although we still have other charge issues with Aubrey, things are much, much better now! You will find you won't know what to do with all the time you have free from suctioning and trach care! Actually, you'll probably now have a hard time keeping track of Aubrey. When Krisitn was trached she sounded so noisy, and when it was out I got nervous about where she was because I couldn't hear her! But what a wonderful adjustment to need to make! Congratulations again, on both counts. Friends in CHARGE, Marilyn Ogan Mom of Ken (12, ADD) and (9, CHARGE+) Wife of Rick Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2002 Report Share Posted May 25, 2002 Bradley, Congratulations on the decannulation of Aubrey and on the birth of her sister, . We are so pleased to hear your happy news. Best wishes, , Curt, Camille, and Kendra Keedy Southern California At 09:41 AM 5/25/02 -0500, you wrote: >Recently we have had a few good things happen that I want to share with >everyone. Yesterday, our daughter Aubrey (3 1/2 years old with charge) >was successfully decannulated! She had the trach put in when she was 3 >months old. So far things are going well. We thought this day would >never come! > >We also had a baby girl, , about 2 1/2 months ago. She was born >completely healthy. One of the tests that we had during the pregnancy >(triple screen) told us that she was high risk for Down's Syndrome, so we >were very worried about that and charge. > >I'm posting this because I hope it can give others hope when they feel >like things will never get better. We were there and although we still >have other charge issues with Aubrey, things are much, much better now! > >Bradley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2002 Report Share Posted May 25, 2002 Bradley, Congratulations on the decannulation of Aubrey and on the birth of her sister, . We are so pleased to hear your happy news. Best wishes, , Curt, Camille, and Kendra Keedy Southern California At 09:41 AM 5/25/02 -0500, you wrote: >Recently we have had a few good things happen that I want to share with >everyone. Yesterday, our daughter Aubrey (3 1/2 years old with charge) >was successfully decannulated! She had the trach put in when she was 3 >months old. So far things are going well. We thought this day would >never come! > >We also had a baby girl, , about 2 1/2 months ago. She was born >completely healthy. One of the tests that we had during the pregnancy >(triple screen) told us that she was high risk for Down's Syndrome, so we >were very worried about that and charge. > >I'm posting this because I hope it can give others hope when they feel >like things will never get better. We were there and although we still >have other charge issues with Aubrey, things are much, much better now! > >Bradley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2002 Report Share Posted May 25, 2002 Congratulations on both! I bet Aubrey feels like a new person. Michele Hatfield Some good news > Recently we have had a few good things happen that I want to share with everyone. Yesterday, our daughter Aubrey (3 1/2 years old with charge) was successfully decannulated! She had the trach put in when she was 3 months old. So far things are going well. We thought this day would never come! > > We also had a baby girl, , about 2 1/2 months ago. She was born completely healthy. One of the tests that we had during the pregnancy (triple screen) told us that she was high risk for Down's Syndrome, so we were very worried about that and charge. > > I'm posting this because I hope it can give others hope when they feel like things will never get better. We were there and although we still have other charge issues with Aubrey, things are much, much better now! > > Bradley > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2002 Report Share Posted May 26, 2002 Great news Kay Some good news > Recently we have had a few good things happen that I want to share with everyone. Yesterday, our daughter Aubrey (3 1/2 years old with charge) was successfully decannulated! She had the trach put in when she was 3 months old. So far things are going well. We thought this day would never come! > > We also had a baby girl, , about 2 1/2 months ago. She was born completely healthy. One of the tests that we had during the pregnancy (triple screen) told us that she was high risk for Down's Syndrome, so we were very worried about that and charge. > > I'm posting this because I hope it can give others hope when they feel like things will never get better. We were there and although we still have other charge issues with Aubrey, things are much, much better now! > > Bradley > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2002 Report Share Posted May 26, 2002 bradley and karen, I am Soooooooo happy for you guys, i e-maield you privately about when this was to happen, but i think i had your old address. I want to know all the details about Aubreys decannulation. I am thrilled for all of you. We have an attempt date to decannulate June 11th! who did it? GOd Bless all of you. cathie, jeff and erika Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2002 Report Share Posted May 26, 2002 bradley and karen, I am Soooooooo happy for you guys, i e-maield you privately about when this was to happen, but i think i had your old address. I want to know all the details about Aubreys decannulation. I am thrilled for all of you. We have an attempt date to decannulate June 11th! who did it? GOd Bless all of you. cathie, jeff and erika Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2002 Report Share Posted May 26, 2002 bradley and karen, I am Soooooooo happy for you guys, i e-maield you privately about when this was to happen, but i think i had your old address. I want to know all the details about Aubreys decannulation. I am thrilled for all of you. We have an attempt date to decannulate June 11th! who did it? GOd Bless all of you. cathie, jeff and erika Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2002 Report Share Posted May 26, 2002 Bradley, I am just thrilled for you, , Aubrey & Ian...this is such happy news. And congratulations on the new baby as well! NO wonder you've been so quiet! Take care and write when you can...and again, Congrats on the big " D " !!!!!!!! ~ Weir Mom to Kennedy, 4yr old CHARGEr, 12, 11, and wife to Graeme New Brunswick, Canada Visit the Weir Website: http://personal.nbnet.nb.ca/gweir ICQ# 1426476 Some good news Recently we have had a few good things happen that I want to share with everyone. Yesterday, our daughter Aubrey (3 1/2 years old with charge) was successfully decannulated! She had the trach put in when she was 3 months old. So far things are going well. We thought this day would never come! We also had a baby girl, , about 2 1/2 months ago. She was born completely healthy. One of the tests that we had during the pregnancy (triple screen) told us that she was high risk for Down's Syndrome, so we were very worried about that and charge. I'm posting this because I hope it can give others hope when they feel like things will never get better. We were there and although we still have other charge issues with Aubrey, things are much, much better now! Bradley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2002 Report Share Posted May 26, 2002 Bradley, I am just thrilled for you, , Aubrey & Ian...this is such happy news. And congratulations on the new baby as well! NO wonder you've been so quiet! Take care and write when you can...and again, Congrats on the big " D " !!!!!!!! ~ Weir Mom to Kennedy, 4yr old CHARGEr, 12, 11, and wife to Graeme New Brunswick, Canada Visit the Weir Website: http://personal.nbnet.nb.ca/gweir ICQ# 1426476 Some good news Recently we have had a few good things happen that I want to share with everyone. Yesterday, our daughter Aubrey (3 1/2 years old with charge) was successfully decannulated! She had the trach put in when she was 3 months old. So far things are going well. We thought this day would never come! We also had a baby girl, , about 2 1/2 months ago. She was born completely healthy. One of the tests that we had during the pregnancy (triple screen) told us that she was high risk for Down's Syndrome, so we were very worried about that and charge. I'm posting this because I hope it can give others hope when they feel like things will never get better. We were there and although we still have other charge issues with Aubrey, things are much, much better now! Bradley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2002 Report Share Posted May 26, 2002 Bradley, I am just thrilled for you, , Aubrey & Ian...this is such happy news. And congratulations on the new baby as well! NO wonder you've been so quiet! Take care and write when you can...and again, Congrats on the big " D " !!!!!!!! ~ Weir Mom to Kennedy, 4yr old CHARGEr, 12, 11, and wife to Graeme New Brunswick, Canada Visit the Weir Website: http://personal.nbnet.nb.ca/gweir ICQ# 1426476 Some good news Recently we have had a few good things happen that I want to share with everyone. Yesterday, our daughter Aubrey (3 1/2 years old with charge) was successfully decannulated! She had the trach put in when she was 3 months old. So far things are going well. We thought this day would never come! We also had a baby girl, , about 2 1/2 months ago. She was born completely healthy. One of the tests that we had during the pregnancy (triple screen) told us that she was high risk for Down's Syndrome, so we were very worried about that and charge. I'm posting this because I hope it can give others hope when they feel like things will never get better. We were there and although we still have other charge issues with Aubrey, things are much, much better now! Bradley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2002 Report Share Posted May 26, 2002 Hi Cathie. Thank you. I hope the same happens for on June 11! As you know, we stopped going to Cincinnati after Aubrey had the airway reconstruction done (and a few follow ups). Since she had been wearing the cap over the trach all day since last July, we felt we should be able to do the decannulation locally. We had it done by the same ENT doctor that put the trach in over 3 years ago, at Children's Mercy Hospital in Kansas City, Missouri. In April, the same ENT took Aubrey's tonsils out because they were very large. For the decannulation, we went into the hospital Thursday afternoon. We just hung out all day with the cap on and then that night had our first overnight test with the cap. Aubrey did good, so at 7:00 am on Friday morning, our ENT came into Aubrey's room. Quite awhile ago, we " trached " one of Aubrey's Pooh Bears and we had been showing her the past week what the doctor was going to do, by decannulating Pooh Bear. So on Friday morning, Dr. Nicklaus decannulated Pooh Bear first, then while Aubrey was sitting on her bed, the doctor just took her trach tie off and pulled out the trach. Aubrey did not even flinch. She didn't cough or anything. We took videos and pictures and Aubrey's sats were 100%. They put some gauze and tape over the stoma and left. We played all day, then spent the night. Her sats were 100% pretty much all night, she never de-satted. The next morning we were dismissed around 7:00 am and came home. Since we've been home, she has done fine. We have just been putting a small piece of gauze and a band-aid over the stoma. Aubrey is telling everyone she sees that she got her trach out, she is so excited. I hope you guys get to experience the same in June. If not, I'm sure your day will come. We will be praying for ! Bradley Re: Some good news > bradley and karen, I am Soooooooo happy for you guys, i e-maield you > privately about when this was to happen, but i think i had your old address. > I want to know all the details about Aubreys decannulation. I am thrilled > for all of you. We have an attempt date to decannulate June 11th! who did > it? > GOd Bless all of you. > cathie, jeff and erika > > > Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter) > please contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > 6th International CHARGE Syndrome Conference, Cleveland, Ohio, > July 25-27, 2003. Information will be available at our website > www.chargesyndrome.org or by calling 1-. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2002 Report Share Posted May 26, 2002 Hi Cathie. Thank you. I hope the same happens for on June 11! As you know, we stopped going to Cincinnati after Aubrey had the airway reconstruction done (and a few follow ups). Since she had been wearing the cap over the trach all day since last July, we felt we should be able to do the decannulation locally. We had it done by the same ENT doctor that put the trach in over 3 years ago, at Children's Mercy Hospital in Kansas City, Missouri. In April, the same ENT took Aubrey's tonsils out because they were very large. For the decannulation, we went into the hospital Thursday afternoon. We just hung out all day with the cap on and then that night had our first overnight test with the cap. Aubrey did good, so at 7:00 am on Friday morning, our ENT came into Aubrey's room. Quite awhile ago, we " trached " one of Aubrey's Pooh Bears and we had been showing her the past week what the doctor was going to do, by decannulating Pooh Bear. So on Friday morning, Dr. Nicklaus decannulated Pooh Bear first, then while Aubrey was sitting on her bed, the doctor just took her trach tie off and pulled out the trach. Aubrey did not even flinch. She didn't cough or anything. We took videos and pictures and Aubrey's sats were 100%. They put some gauze and tape over the stoma and left. We played all day, then spent the night. Her sats were 100% pretty much all night, she never de-satted. The next morning we were dismissed around 7:00 am and came home. Since we've been home, she has done fine. We have just been putting a small piece of gauze and a band-aid over the stoma. Aubrey is telling everyone she sees that she got her trach out, she is so excited. I hope you guys get to experience the same in June. If not, I'm sure your day will come. We will be praying for ! Bradley Re: Some good news > bradley and karen, I am Soooooooo happy for you guys, i e-maield you > privately about when this was to happen, but i think i had your old address. > I want to know all the details about Aubreys decannulation. I am thrilled > for all of you. We have an attempt date to decannulate June 11th! who did > it? > GOd Bless all of you. > cathie, jeff and erika > > > Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter) > please contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > 6th International CHARGE Syndrome Conference, Cleveland, Ohio, > July 25-27, 2003. Information will be available at our website > www.chargesyndrome.org or by calling 1-. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2002 Report Share Posted May 26, 2002 Thanks, . Between the stuff with Aubrey and having the new baby, coupled with my company's struggle to stay afloat, it has been a very hectic year. If everything goes ok, we are planning on trying to attend the Cleveland Charge conference, so hopefully we can see everyone again then! Bradley Some good news > > > Recently we have had a few good things happen that I want to share with everyone. Yesterday, our daughter Aubrey (3 1/2 years old with charge) was successfully decannulated! She had the trach put in when she was 3 months old. So far things are going well. We thought this day would never come! > > We also had a baby girl, , about 2 1/2 months ago. She was born completely healthy. One of the tests that we had during the pregnancy (triple screen) told us that she was high risk for Down's Syndrome, so we were very worried about that and charge. > > I'm posting this because I hope it can give others hope when they feel like things will never get better. We were there and although we still have other charge issues with Aubrey, things are much, much better now! > > Bradley > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2002 Report Share Posted May 26, 2002 Thank you! Some good news > > > > Recently we have had a few good things happen that I want to share with > everyone. Yesterday, our daughter Aubrey (3 1/2 years old with charge) was > successfully decannulated! She had the trach put in when she was 3 months > old. So far things are going well. We thought this day would never come! > > > > We also had a baby girl, , about 2 1/2 months ago. She was born > completely healthy. One of the tests that we had during the pregnancy > (triple screen) told us that she was high risk for Down's Syndrome, so we > were very worried about that and charge. > > > > I'm posting this because I hope it can give others hope when they feel > like things will never get better. We were there and although we still have > other charge issues with Aubrey, things are much, much better now! > > > > Bradley > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2002 Report Share Posted May 26, 2002 Thank you! Some good news > > > > Recently we have had a few good things happen that I want to share with > everyone. Yesterday, our daughter Aubrey (3 1/2 years old with charge) was > successfully decannulated! She had the trach put in when she was 3 months > old. So far things are going well. We thought this day would never come! > > > > We also had a baby girl, , about 2 1/2 months ago. She was born > completely healthy. One of the tests that we had during the pregnancy > (triple screen) told us that she was high risk for Down's Syndrome, so we > were very worried about that and charge. > > > > I'm posting this because I hope it can give others hope when they feel > like things will never get better. We were there and although we still have > other charge issues with Aubrey, things are much, much better now! > > > > Bradley > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2002 Report Share Posted May 26, 2002 Thank you! Bradley Re: Some good news > Bradley, > > Congratulations on the decannulation of Aubrey and on the birth of her > sister, . We are so pleased to hear your happy news. > > Best wishes, > , Curt, Camille, and Kendra Keedy > Southern California > At 09:41 AM 5/25/02 -0500, you wrote: > >Recently we have had a few good things happen that I want to share with > >everyone. Yesterday, our daughter Aubrey (3 1/2 years old with charge) > >was successfully decannulated! She had the trach put in when she was 3 > >months old. So far things are going well. We thought this day would > >never come! > > > >We also had a baby girl, , about 2 1/2 months ago. She was born > >completely healthy. One of the tests that we had during the pregnancy > >(triple screen) told us that she was high risk for Down's Syndrome, so we > >were very worried about that and charge. > > > >I'm posting this because I hope it can give others hope when they feel > >like things will never get better. We were there and although we still > >have other charge issues with Aubrey, things are much, much better now! > > > >Bradley > > > > > Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter) > please contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > 6th International CHARGE Syndrome Conference, Cleveland, Ohio, > July 25-27, 2003. Information will be available at our website > www.chargesyndrome.org or by calling 1-. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2002 Report Share Posted May 26, 2002 thank you. Yes, she is very excited and can't wait to tell everyone when she sees them. Bradley Some good news > > > > Recently we have had a few good things happen that I want to share with > everyone. Yesterday, our daughter Aubrey (3 1/2 years old with charge) was > successfully decannulated! She had the trach put in when she was 3 months > old. So far things are going well. We thought this day would never come! > > > > We also had a baby girl, , about 2 1/2 months ago. She was born > completely healthy. One of the tests that we had during the pregnancy > (triple screen) told us that she was high risk for Down's Syndrome, so we > were very worried about that and charge. > > > > I'm posting this because I hope it can give others hope when they feel > like things will never get better. We were there and although we still have > other charge issues with Aubrey, things are much, much better now! > > > > Bradley > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2002 Report Share Posted May 26, 2002 thanks, Marilyn. The very first thing I did when we got home from the hospital was put all of Aubrey's trach stuff in the basement on our storage shelves. It felt good to get it out of her room. And last nite, it was so nice to just be able to put her in bed and not have to do all the trach stuff! Bradley Re: Some good news > Bradley wrote: > > Recently we have had a few good things happen that I want to share with > everyone. Yesterday, our daughter Aubrey (3 1/2 years old with charge) was > successfully decannulated! She had the trach put in when she was 3 months > old. So far things are going well. We thought this day would never come! > > What great news! We've been there! And about the same time frame for > too (3 months to 3 years trached)! You're right - you think it will > never come, then it does and - WOW! You might see a noted change in > independence with Aubrey - at least we did with . It was like > freeing her because she'd also been restricted with CPAP tubing and oxygen. > > > > > We also had a baby girl, , about 2 1/2 months ago. She was born > completely healthy. One of the tests that we had during the pregnancy > (triple screen) told us that she was high risk for Down's Syndrome, so we > were very worried about that and charge. > > Congratulations! I'm so glad is healthy. Having that worry during > the pregnancy had to be a bit " stressful " , to say the least. > > > > > I'm posting this because I hope it can give others hope when they feel > like things will never get better. We were there and although we still have > other charge issues with Aubrey, things are much, much better now! > > You will find you won't know what to do with all the time you have free from > suctioning and trach care! Actually, you'll probably now have a hard time > keeping track of Aubrey. When Krisitn was trached she sounded so noisy, and > when it was out I got nervous about where she was because I couldn't hear > her! But what a wonderful adjustment to need to make! > > Congratulations again, on both counts. > Friends in CHARGE, > Marilyn Ogan > Mom of Ken (12, ADD) and (9, CHARGE+) > Wife of Rick > > > > Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter) > please contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > 6th International CHARGE Syndrome Conference, Cleveland, Ohio, > July 25-27, 2003. Information will be available at our website > www.chargesyndrome.org or by calling 1-. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2002 Report Share Posted May 26, 2002 thanks, Marilyn. The very first thing I did when we got home from the hospital was put all of Aubrey's trach stuff in the basement on our storage shelves. It felt good to get it out of her room. And last nite, it was so nice to just be able to put her in bed and not have to do all the trach stuff! Bradley Re: Some good news > Bradley wrote: > > Recently we have had a few good things happen that I want to share with > everyone. Yesterday, our daughter Aubrey (3 1/2 years old with charge) was > successfully decannulated! She had the trach put in when she was 3 months > old. So far things are going well. We thought this day would never come! > > What great news! We've been there! And about the same time frame for > too (3 months to 3 years trached)! You're right - you think it will > never come, then it does and - WOW! You might see a noted change in > independence with Aubrey - at least we did with . It was like > freeing her because she'd also been restricted with CPAP tubing and oxygen. > > > > > We also had a baby girl, , about 2 1/2 months ago. She was born > completely healthy. One of the tests that we had during the pregnancy > (triple screen) told us that she was high risk for Down's Syndrome, so we > were very worried about that and charge. > > Congratulations! I'm so glad is healthy. Having that worry during > the pregnancy had to be a bit " stressful " , to say the least. > > > > > I'm posting this because I hope it can give others hope when they feel > like things will never get better. We were there and although we still have > other charge issues with Aubrey, things are much, much better now! > > You will find you won't know what to do with all the time you have free from > suctioning and trach care! Actually, you'll probably now have a hard time > keeping track of Aubrey. When Krisitn was trached she sounded so noisy, and > when it was out I got nervous about where she was because I couldn't hear > her! But what a wonderful adjustment to need to make! > > Congratulations again, on both counts. > Friends in CHARGE, > Marilyn Ogan > Mom of Ken (12, ADD) and (9, CHARGE+) > Wife of Rick > > > > Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter) > please contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > 6th International CHARGE Syndrome Conference, Cleveland, Ohio, > July 25-27, 2003. Information will be available at our website > www.chargesyndrome.org or by calling 1-. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2002 Report Share Posted May 27, 2002 Gunilla, that is wonderful news about sleeping & breathing better now. KEep us posted when you can! Hugs, ~ Weir Mom to Kennedy, 4yr old CHARGEr, 12, 11, and wife to Graeme New Brunswick, Canada Visit the Weir Website: http://personal.nbnet.nb.ca/gweir ICQ# 1426476 Some good news > Recently we have had a few good things happen that I want to share with everyone. Yesterday, our daughter Aubrey (3 1/2 years old with charge) was successfully decannulated! She had the trach put in when she was 3 months old. So far things are going well. We thought this day would never come! > > We also had a baby girl, , about 2 1/2 months ago. She was born completely healthy. One of the tests that we had during the pregnancy (triple screen) told us that she was high risk for Down's Syndrome, so we were very worried about that and charge. > > I'm posting this because I hope it can give others hope when they feel like things will never get better. We were there and although we still have other charge issues with Aubrey, things are much, much better now! > > Bradley > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2002 Report Share Posted May 27, 2002 I can't even imagine how happy ( & probably weird) you must have felt... I saved the story about the doctor decannulating Pooh bear, that's too good... ~ Weir Mom to Kennedy, 4yr old CHARGEr, 12, 11, and wife to Graeme New Brunswick, Canada Visit the Weir Website: http://personal.nbnet.nb.ca/gweir ICQ# 1426476 Re: Some good news > Bradley wrote: > > Recently we have had a few good things happen that I want to share with > everyone. Yesterday, our daughter Aubrey (3 1/2 years old with charge) was > successfully decannulated! She had the trach put in when she was 3 months > old. So far things are going well. We thought this day would never come! > > What great news! We've been there! And about the same time frame for > too (3 months to 3 years trached)! You're right - you think it will > never come, then it does and - WOW! You might see a noted change in > independence with Aubrey - at least we did with . It was like > freeing her because she'd also been restricted with CPAP tubing and oxygen. > > > > > We also had a baby girl, , about 2 1/2 months ago. She was born > completely healthy. One of the tests that we had during the pregnancy > (triple screen) told us that she was high risk for Down's Syndrome, so we > were very worried about that and charge. > > Congratulations! I'm so glad is healthy. Having that worry during > the pregnancy had to be a bit " stressful " , to say the least. > > > > > I'm posting this because I hope it can give others hope when they feel > like things will never get better. We were there and although we still have > other charge issues with Aubrey, things are much, much better now! > > You will find you won't know what to do with all the time you have free from > suctioning and trach care! Actually, you'll probably now have a hard time > keeping track of Aubrey. When Krisitn was trached she sounded so noisy, and > when it was out I got nervous about where she was because I couldn't hear > her! But what a wonderful adjustment to need to make! > > Congratulations again, on both counts. > Friends in CHARGE, > Marilyn Ogan > Mom of Ken (12, ADD) and (9, CHARGE+) > Wife of Rick > > > > Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter) > please contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > 6th International CHARGE Syndrome Conference, Cleveland, Ohio, > July 25-27, 2003. Information will be available at our website > www.chargesyndrome.org or by calling 1-. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2002 Report Share Posted May 27, 2002 I can't even imagine how happy ( & probably weird) you must have felt... I saved the story about the doctor decannulating Pooh bear, that's too good... ~ Weir Mom to Kennedy, 4yr old CHARGEr, 12, 11, and wife to Graeme New Brunswick, Canada Visit the Weir Website: http://personal.nbnet.nb.ca/gweir ICQ# 1426476 Re: Some good news > Bradley wrote: > > Recently we have had a few good things happen that I want to share with > everyone. Yesterday, our daughter Aubrey (3 1/2 years old with charge) was > successfully decannulated! She had the trach put in when she was 3 months > old. So far things are going well. We thought this day would never come! > > What great news! We've been there! And about the same time frame for > too (3 months to 3 years trached)! You're right - you think it will > never come, then it does and - WOW! You might see a noted change in > independence with Aubrey - at least we did with . It was like > freeing her because she'd also been restricted with CPAP tubing and oxygen. > > > > > We also had a baby girl, , about 2 1/2 months ago. She was born > completely healthy. One of the tests that we had during the pregnancy > (triple screen) told us that she was high risk for Down's Syndrome, so we > were very worried about that and charge. > > Congratulations! I'm so glad is healthy. Having that worry during > the pregnancy had to be a bit " stressful " , to say the least. > > > > > I'm posting this because I hope it can give others hope when they feel > like things will never get better. We were there and although we still have > other charge issues with Aubrey, things are much, much better now! > > You will find you won't know what to do with all the time you have free from > suctioning and trach care! Actually, you'll probably now have a hard time > keeping track of Aubrey. When Krisitn was trached she sounded so noisy, and > when it was out I got nervous about where she was because I couldn't hear > her! But what a wonderful adjustment to need to make! > > Congratulations again, on both counts. > Friends in CHARGE, > Marilyn Ogan > Mom of Ken (12, ADD) and (9, CHARGE+) > Wife of Rick > > > > Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter) > please contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > 6th International CHARGE Syndrome Conference, Cleveland, Ohio, > July 25-27, 2003. Information will be available at our website > www.chargesyndrome.org or by calling 1-. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2002 Report Share Posted May 27, 2002 I can't even imagine how happy ( & probably weird) you must have felt... I saved the story about the doctor decannulating Pooh bear, that's too good... ~ Weir Mom to Kennedy, 4yr old CHARGEr, 12, 11, and wife to Graeme New Brunswick, Canada Visit the Weir Website: http://personal.nbnet.nb.ca/gweir ICQ# 1426476 Re: Some good news > Bradley wrote: > > Recently we have had a few good things happen that I want to share with > everyone. Yesterday, our daughter Aubrey (3 1/2 years old with charge) was > successfully decannulated! She had the trach put in when she was 3 months > old. So far things are going well. We thought this day would never come! > > What great news! We've been there! And about the same time frame for > too (3 months to 3 years trached)! You're right - you think it will > never come, then it does and - WOW! You might see a noted change in > independence with Aubrey - at least we did with . It was like > freeing her because she'd also been restricted with CPAP tubing and oxygen. > > > > > We also had a baby girl, , about 2 1/2 months ago. She was born > completely healthy. One of the tests that we had during the pregnancy > (triple screen) told us that she was high risk for Down's Syndrome, so we > were very worried about that and charge. > > Congratulations! I'm so glad is healthy. Having that worry during > the pregnancy had to be a bit " stressful " , to say the least. > > > > > I'm posting this because I hope it can give others hope when they feel > like things will never get better. We were there and although we still have > other charge issues with Aubrey, things are much, much better now! > > You will find you won't know what to do with all the time you have free from > suctioning and trach care! Actually, you'll probably now have a hard time > keeping track of Aubrey. When Krisitn was trached she sounded so noisy, and > when it was out I got nervous about where she was because I couldn't hear > her! But what a wonderful adjustment to need to make! > > Congratulations again, on both counts. > Friends in CHARGE, > Marilyn Ogan > Mom of Ken (12, ADD) and (9, CHARGE+) > Wife of Rick > > > > Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter) > please contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > 6th International CHARGE Syndrome Conference, Cleveland, Ohio, > July 25-27, 2003. Information will be available at our website > www.chargesyndrome.org or by calling 1-. > > > Quote Link to comment Share on other sites More sharing options...
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