Guest guest Posted March 27, 2004 Report Share Posted March 27, 2004 , I am glad to hear is doing well. She reminds me of 13 years ago. complained about not being out of bed more the first couple of days. She was 6 years old, pale and low energy. Her open heart ASD repair - 6 in scare, one chest tube- was in May. At her mid- August check up she was begging the doctor to let her learn to ride her two wheeler. ( Not enought strength before. We have been blessed, balance hasn't been an issue ). I kept telling her, " No Way will he let you, don't even ask. " She was never shy about her demands to do things. She ask and he said , " Sure, why not. " I was in shock but he looked at me and said , " Bike lessons with training wheels, doctor's orders. " smiled that " I won " smile but was not nasty to me. Within a week she was riding her bike without training wheels. I was still a nervous wreck but she never fell and hurt her chest as I had expected. CHARGE kids are amazing in so many ways. Blessings and Hugs for continued recovery, Lynn surgery > > > 's surgery finally took place on Monday, the 22nd. She is > recovering " as expected " and the surgery " went well " according to the > doctors. They reconstructed her aortic arch, as her aorta was > constricted to .3 cm where it should have been 1 cm...she is > tolerating > everything in her usual, matter of fact way. Most people I know > would > be whining and carrying on about the pain, but not ...typical > CHARGEr, huh? Could come home as early as Sunday if we can get her > to > tolerate her feedings better. > kginn > > > > > > > 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 > 7th International > CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. > Information will be available at our website > www.chargesyndrome.org or by calling 1-. In Canada, you > may contact CHARGE Syndrome Canada at 1- (families), visit > www.chargesyndrome.ca, or email info@.... Thank you! > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2004 Report Share Posted March 28, 2004 I'm glad she's doing ok. Aubrie's coarc was repaired by cutting out the narrow area and sewing the 2 ends together. I don't remember any talk about a patch. She was about 6-7 lbs at the time. Don't all the scars on your baby drive you nuts? At some point it hit me that Aubrie's hip surgery would add 2 more ugly scars on her legs. I have no idea the size or placement of them, but I'm guessing they'll show in a bathing suit. She already has her heart surgery scars (the big incision and chest tubes like you said), a cut-down on her wrist, 2 small scars on her chest where we removed mysterious lumps that turned out to be misplaced lymph nodes... then the hip things. Argh! I know it could be worse and it's just cosmetic, but gee whiz... she's my precious baby! Anyway- I look forward to hearing that is home and active! Michele W surgery > > > 's surgery finally took place on Monday, the 22nd. She is > recovering " as expected " and the surgery " went well " according to the > doctors. They reconstructed her aortic arch, as her aorta was > constricted to .3 cm where it should have been 1 cm...she is > tolerating > everything in her usual, matter of fact way. Most people I know > would > be whining and carrying on about the pain, but not ...typical > CHARGEr, huh? Could come home as early as Sunday if we can get her > to > tolerate her feedings better. > kginn > > > > > > > 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 > 7th International > CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. > Information will be available at our website > www.chargesyndrome.org or by calling 1-. In Canada, you > may contact CHARGE Syndrome Canada at 1- (families), visit > www.chargesyndrome.ca, or email info@.... Thank you! > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2004 Report Share Posted March 29, 2004 surgery > > > 's surgery finally took place on Monday, the 22nd. She is > recovering " as expected " and the surgery " went well " according to the > doctors. They reconstructed her aortic arch, as her aorta was > constricted to .3 cm where it should have been 1 cm...she is > tolerating > everything in her usual, matter of fact way. Most people I know > would > be whining and carrying on about the pain, but not ...typical > CHARGEr, huh? Could come home as early as Sunday if we can get her > to > tolerate her feedings better. > kginn > > > > > > > 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 > 7th International > CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. > Information will be available at our website > www.chargesyndrome.org or by calling 1-. In Canada, you > may contact CHARGE Syndrome Canada at 1- (families), visit > www.chargesyndrome.ca, or email info@.... Thank you! > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2004 Report Share Posted March 29, 2004 Michele, I understand how you feel about all the scars, but think of them more like " victory badges " . 's trach scar haunted me for a number of years until I made up my mind to think of it as a " victory badge " . She had a " trach scar resvion " at age 14 and now only I can notice a tiny white scar. She wears necklaces all the time now. 's open heart scar is along her rib and now tucked under her breast. We were luckly to have a surgon who believed in doing females that way. The chest tube scar is all but gone. Prayers, hugs and blessings for all the families dealing with surgeries and recovery. After dealing with 27 recoveries I really do understand the feelings expressed here. Lynn Ohio surgery > > > 's surgery finally took place on Monday, the 22nd. She is > recovering " as expected " and the surgery " went well " according to the > doctors. They reconstructed her aortic arch, as her aorta was > constricted to .3 cm where it should have been 1 cm...she is > tolerating > everything in her usual, matter of fact way. Most people I know > would > be whining and carrying on about the pain, but not ...typical > CHARGEr, huh? Could come home as early as Sunday if we can get her > to > tolerate her feedings better. > kginn > > > > > > > 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 > 7th International > CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. > Information will be available at our website > www.chargesyndrome.org or by calling 1-. In Canada, you > may contact CHARGE Syndrome Canada at 1- (families), visit > www.chargesyndrome.ca, or email info@.... Thank you! > > > > Quote Link to comment Share on other sites More sharing options...
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