Guest guest Posted June 9, 2004 Report Share Posted June 9, 2004 tim has a definite snese of smell and taste--he had 3 choanal atresia surgeries. maria Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2004 Report Share Posted June 9, 2004 tim has a definite snese of smell and taste--he had 3 choanal atresia surgeries. maria Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2004 Report Share Posted June 9, 2004 tim has a definite snese of smell and taste--he had 3 choanal atresia surgeries. maria Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2004 Report Share Posted June 9, 2004 , This is interesting, because Tim eats by mouth right? Didn't he always? I think there is a definite connection of those kids who don't want to eat because why do it? Can't smell, can't taste and swallowing is difficult. Debbie re: smells tim has a definite snese of smell and taste--he had 3 choanal atresia surgeries. maria Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2004 Report Share Posted June 9, 2004 , This is interesting, because Tim eats by mouth right? Didn't he always? I think there is a definite connection of those kids who don't want to eat because why do it? Can't smell, can't taste and swallowing is difficult. Debbie re: smells tim has a definite snese of smell and taste--he had 3 choanal atresia surgeries. maria Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2004 Report Share Posted June 9, 2004 yes, oral eater after 6 days old--very slow at first, but went home on the bottle, with feeding tube --just in case, but never had to use it. didn't eat solids until 27 months--tons of sensory issues, still has some, doesn't eat alot, or a variety really,, but he does eat orally. going to the nutritionalist on the 23--see what they say about getting weight on him. maria re: smells > > > tim has a definite snese of smell and taste--he had 3 choanal atresia > surgeries. > > maria > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2004 Report Share Posted June 9, 2004 yes, oral eater after 6 days old--very slow at first, but went home on the bottle, with feeding tube --just in case, but never had to use it. didn't eat solids until 27 months--tons of sensory issues, still has some, doesn't eat alot, or a variety really,, but he does eat orally. going to the nutritionalist on the 23--see what they say about getting weight on him. maria re: smells > > > tim has a definite snese of smell and taste--he had 3 choanal atresia > surgeries. > > maria > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2004 Report Share Posted June 9, 2004 yes, oral eater after 6 days old--very slow at first, but went home on the bottle, with feeding tube --just in case, but never had to use it. didn't eat solids until 27 months--tons of sensory issues, still has some, doesn't eat alot, or a variety really,, but he does eat orally. going to the nutritionalist on the 23--see what they say about getting weight on him. maria re: smells > > > tim has a definite snese of smell and taste--he had 3 choanal atresia > surgeries. > > maria > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2004 Report Share Posted June 9, 2004 debbie, just curious--what therapists do you have? we have mary-0t , lanie --pt, and jo anne--speech, I've been very pleased with them all. maria re: smells > > > tim has a definite snese of smell and taste--he had 3 choanal atresia > surgeries. > > maria > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2004 Report Share Posted June 9, 2004 debbie, just curious--what therapists do you have? we have mary-0t , lanie --pt, and jo anne--speech, I've been very pleased with them all. maria re: smells > > > tim has a definite snese of smell and taste--he had 3 choanal atresia > surgeries. > > maria > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2004 Report Share Posted June 9, 2004 debbie, just curious--what therapists do you have? we have mary-0t , lanie --pt, and jo anne--speech, I've been very pleased with them all. maria re: smells > > > tim has a definite snese of smell and taste--he had 3 choanal atresia > surgeries. > > maria > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2004 Report Share Posted June 10, 2004 - Please share stragies for weight gain. Aubrie is about 37 " (unless she's grown since I last measured) and still hanging steady at 38#. I have recently started adding powdered milk to her whole milk hoping to boost the calories of that. She doesn't notice the difference so it's working as far as getting it into her -- but I can't tell yet if it's making a weight difference. I haven't found any other ways to sneak extra calories in. She doesn't like Carnation Instant Breakfast or Pediasure. And she doesn't like milk shakes. I can add the powdered milk to mac n cheese etc if she is the only one eating it. The rest of the family is thin, but we still don't need all the extra cals and fat. Michele W Aubrie's mom (6 yrs) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2004 Report Share Posted June 10, 2004 - Please share stragies for weight gain. Aubrie is about 37 " (unless she's grown since I last measured) and still hanging steady at 38#. I have recently started adding powdered milk to her whole milk hoping to boost the calories of that. She doesn't notice the difference so it's working as far as getting it into her -- but I can't tell yet if it's making a weight difference. I haven't found any other ways to sneak extra calories in. She doesn't like Carnation Instant Breakfast or Pediasure. And she doesn't like milk shakes. I can add the powdered milk to mac n cheese etc if she is the only one eating it. The rest of the family is thin, but we still don't need all the extra cals and fat. Michele W Aubrie's mom (6 yrs) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2004 Report Share Posted June 10, 2004 Michele, will do....he is 47 inches and 42 pounds--our little string bean!! maria Re: smells > - > Please share stragies for weight gain. Aubrie is about 37 " (unless she's > grown since I last measured) and still hanging steady at 38#. I have > recently started adding powdered milk to her whole milk hoping to boost the > calories of that. She doesn't notice the difference so it's working as far > as getting it into her -- but I can't tell yet if it's making a weight > difference. I haven't found any other ways to sneak extra calories in. She > doesn't like Carnation Instant Breakfast or Pediasure. And she doesn't like > milk shakes. I can add the powdered milk to mac n cheese etc if she is the > only one eating it. The rest of the family is thin, but we still don't need > all the extra cals and fat. > > Michele W > Aubrie's mom (6 yrs) > > > > > 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 June 10, 2004 Report Share Posted June 10, 2004 Michele, will do....he is 47 inches and 42 pounds--our little string bean!! maria Re: smells > - > Please share stragies for weight gain. Aubrie is about 37 " (unless she's > grown since I last measured) and still hanging steady at 38#. I have > recently started adding powdered milk to her whole milk hoping to boost the > calories of that. She doesn't notice the difference so it's working as far > as getting it into her -- but I can't tell yet if it's making a weight > difference. I haven't found any other ways to sneak extra calories in. She > doesn't like Carnation Instant Breakfast or Pediasure. And she doesn't like > milk shakes. I can add the powdered milk to mac n cheese etc if she is the > only one eating it. The rest of the family is thin, but we still don't need > all the extra cals and fat. > > Michele W > Aubrie's mom (6 yrs) > > > > > 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 June 10, 2004 Report Share Posted June 10, 2004 Michele, will do....he is 47 inches and 42 pounds--our little string bean!! maria Re: smells > - > Please share stragies for weight gain. Aubrie is about 37 " (unless she's > grown since I last measured) and still hanging steady at 38#. I have > recently started adding powdered milk to her whole milk hoping to boost the > calories of that. She doesn't notice the difference so it's working as far > as getting it into her -- but I can't tell yet if it's making a weight > difference. I haven't found any other ways to sneak extra calories in. She > doesn't like Carnation Instant Breakfast or Pediasure. And she doesn't like > milk shakes. I can add the powdered milk to mac n cheese etc if she is the > only one eating it. The rest of the family is thin, but we still don't need > all the extra cals and fat. > > Michele W > Aubrie's mom (6 yrs) > > > > > 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 June 10, 2004 Report Share Posted June 10, 2004 Lynn- Aubrie does like PB and eats PBJ every once in a while. It's not her favorite like some kids. I let her eat cookies, McDs, etc as often as she wants, but she also eats healthy meals with us -- meat and veggies. I hate to discourage healthful eating, but sometimes I am thinking to myself that her healthy meal isn't going to add any weight. So then I give her fattening snacks. Trouble is, she isn't the one who likes the fattening stuff the best -- it's DJ and . So if I have that stuff in the house in quantity, it's everyone else who eats it much more than her. We do our best to get hi cal stuff into her and eat healthfully at the same time. Michele Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2004 Report Share Posted June 10, 2004 Lynn- Aubrie does like PB and eats PBJ every once in a while. It's not her favorite like some kids. I let her eat cookies, McDs, etc as often as she wants, but she also eats healthy meals with us -- meat and veggies. I hate to discourage healthful eating, but sometimes I am thinking to myself that her healthy meal isn't going to add any weight. So then I give her fattening snacks. Trouble is, she isn't the one who likes the fattening stuff the best -- it's DJ and . So if I have that stuff in the house in quantity, it's everyone else who eats it much more than her. We do our best to get hi cal stuff into her and eat healthfully at the same time. Michele Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2004 Report Share Posted June 10, 2004 Lynn- Aubrie does like PB and eats PBJ every once in a while. It's not her favorite like some kids. I let her eat cookies, McDs, etc as often as she wants, but she also eats healthy meals with us -- meat and veggies. I hate to discourage healthful eating, but sometimes I am thinking to myself that her healthy meal isn't going to add any weight. So then I give her fattening snacks. Trouble is, she isn't the one who likes the fattening stuff the best -- it's DJ and . So if I have that stuff in the house in quantity, it's everyone else who eats it much more than her. We do our best to get hi cal stuff into her and eat healthfully at the same time. Michele Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2004 Report Share Posted June 10, 2004 5 meals a day is something I can try. And ice cream is a good thing here too. We walk to the local ice cream shop several times a week. Problem is I'm the one who finishes her cone when she's done with the small amount she eats (after I've eaten my own). I'll give more frequent meals a try. Let me know if you come up with any other successful strategies. Michele W Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2004 Report Share Posted June 10, 2004 5 meals a day is something I can try. And ice cream is a good thing here too. We walk to the local ice cream shop several times a week. Problem is I'm the one who finishes her cone when she's done with the small amount she eats (after I've eaten my own). I'll give more frequent meals a try. Let me know if you come up with any other successful strategies. Michele W Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2004 Report Share Posted June 10, 2004 5 meals a day is something I can try. And ice cream is a good thing here too. We walk to the local ice cream shop several times a week. Problem is I'm the one who finishes her cone when she's done with the small amount she eats (after I've eaten my own). I'll give more frequent meals a try. Let me know if you come up with any other successful strategies. Michele W Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2004 Report Share Posted June 10, 2004 Sounds like you are doing everything you can. was a tiny " peanut " for many many years. I know how you feel. Lynn Re: smells Lynn- Aubrie does like PB and eats PBJ every once in a while. It's not her favorite like some kids. I let her eat cookies, McDs, etc as often as she wants, but she also eats healthy meals with us -- meat and veggies. I hate to discourage healthful eating, but sometimes I am thinking to myself that her healthy meal isn't going to add any weight. So then I give her fattening snacks. Trouble is, she isn't the one who likes the fattening stuff the best -- it's DJ and . So if I have that stuff in the house in quantity, it's everyone else who eats it much more than her. We do our best to get hi cal stuff into her and eat healthfully at the same time. Michele 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 June 10, 2004 Report Share Posted June 10, 2004 Sounds like you are doing everything you can. was a tiny " peanut " for many many years. I know how you feel. Lynn Re: smells Lynn- Aubrie does like PB and eats PBJ every once in a while. It's not her favorite like some kids. I let her eat cookies, McDs, etc as often as she wants, but she also eats healthy meals with us -- meat and veggies. I hate to discourage healthful eating, but sometimes I am thinking to myself that her healthy meal isn't going to add any weight. So then I give her fattening snacks. Trouble is, she isn't the one who likes the fattening stuff the best -- it's DJ and . So if I have that stuff in the house in quantity, it's everyone else who eats it much more than her. We do our best to get hi cal stuff into her and eat healthfully at the same time. Michele 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 June 10, 2004 Report Share Posted June 10, 2004 Sounds like you are doing everything you can. was a tiny " peanut " for many many years. I know how you feel. Lynn Re: smells Lynn- Aubrie does like PB and eats PBJ every once in a while. It's not her favorite like some kids. I let her eat cookies, McDs, etc as often as she wants, but she also eats healthy meals with us -- meat and veggies. I hate to discourage healthful eating, but sometimes I am thinking to myself that her healthy meal isn't going to add any weight. So then I give her fattening snacks. Trouble is, she isn't the one who likes the fattening stuff the best -- it's DJ and . So if I have that stuff in the house in quantity, it's everyone else who eats it much more than her. We do our best to get hi cal stuff into her and eat healthfully at the same time. Michele 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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