Guest guest Posted May 3, 2006 Report Share Posted May 3, 2006 While I was waiting for Cedie to come back from her cath, I met this little boy name Cole. He is 3 1/2 years old. He was coming by TCU to " visit " in between dr appointments. Cole was hospitalized until 1 week before his first birthday. He went home on a vent (he had a trach). His pulmonologist (same as Cedie's) said that they would be hospitalized again and would not get off the vent for a long time if they left at that time. Cole was never hospitalized again. He was off the vent within 7 months and got his trach out 9 months after the discharge. What I was most amazed at was how social he was. He was sweet as can be and was talking to everyone who passed by! I am always so scared of the long term effects for Cedie's long hospital stay. You would think that after spending so many months in that kind of environment and always getting messed with around the clock, that it would take a toll on their psyche. Cole does'nt know it but he gave me hope that Cedie wil have better days! Mock- mom to Dylan and Cedie (10 mth old charger) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2006 Report Share Posted May 3, 2006 AWWW I met a little girl that was down the hall from Eva last week and she was so cute!! She was about 3 and I could tell she is in and out of the hospital alot, her room was just filled with goodies and toys. She had a walker and I could see Eva in her eyes, she had such a great spirit and was just so cute!!! I know I have met and seen alot of people who have given me hope and made it not look as bad as we may think it is...(Thanks Ellen!!!) It does help to see other childern do so well it gives us hope for the future. Hugs, Crystal and Eva (1 year old CHARGEr) > > While I was waiting for Cedie to come back from her cath, I met this > little boy name Cole. He is 3 1/2 years old. He was coming by TCU > to " visit " in between dr appointments. > Cole was hospitalized until 1 week before his first birthday. He went > home on a vent (he had a trach). His pulmonologist (same as Cedie's) > said that they would be hospitalized again and would not get off the > vent for a long time if they left at that time. Cole was never > hospitalized again. He was off the vent within 7 months and got his > trach out 9 months after the discharge. > What I was most amazed at was how social he was. He was sweet as can > be and was talking to everyone who passed by! I am always so scared of > the long term effects for Cedie's long hospital stay. You would think > that after spending so many months in that kind of environment and > always getting messed with around the clock, that it would take a toll > on their psyche. Cole does'nt know it but he gave me hope that Cedie > wil have better days! > > Mock- mom to Dylan and Cedie (10 mth old charger) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2006 Report Share Posted May 4, 2006 I couldnt agree more, there is a cancer ward near where we were staying, and you see the kids pushing their drugs along to go to the hospital goody shop, and you thank your lucky stars its just charge!! lesx > yeah xxxxxxx > > > > > > AWWW I met a little girl that was down the hall from Eva last week > > and she was so cute!! She was about 3 and I could tell she is in and > > out of the hospital alot, her room was just filled with goodies and > > toys. She had a walker and I could see Eva in her eyes, she had such > > a great spirit and was just so cute!!! > > I know I have met and seen alot of people who have given me hope and > > made it not look as bad as we may think it is...(Thanks Ellen!!!) > > It does help to see other childern do so well it gives us hope for > > the future. > > > > Hugs, > > Crystal and Eva (1 year old CHARGEr) > > > > > > > > > > > > While I was waiting for Cedie to come back from her cath, I met > > this > > > little boy name Cole. He is 3 1/2 years old. He was coming by > > TCU > > > to " visit " in between dr appointments. > > > Cole was hospitalized until 1 week before his first birthday. He > > went > > > home on a vent (he had a trach). His pulmonologist (same as > > Cedie's) > > > said that they would be hospitalized again and would not get off > > the > > > vent for a long time if they left at that time. Cole was never > > > hospitalized again. He was off the vent within 7 months and got > > his > > > trach out 9 months after the discharge. > > > What I was most amazed at was how social he was. He was sweet as > > can > > > be and was talking to everyone who passed by! I am always so > > scared of > > > the long term effects for Cedie's long hospital stay. You would > > think > > > that after spending so many months in that kind of environment and > > > always getting messed with around the clock, that it would take a > > toll > > > on their psyche. Cole does'nt know it but he gave me hope that > > Cedie > > > wil have better days! > > > > > > Mock- mom to Dylan and Cedie (10 mth old charger) > > > > > > > > > > > > > > > > > CHARGE SYNDROME LISTSERV PHOTO PAGE: > > http://www.imagestation.com/album/?id=2117043995 > > > > Membership of this email support group does not constitute membership in > > the CHARGE Syndrome Foundation; for information about the CHARGE Syndrome > > Foundation or to become a member (and get the newsletter), > > please contact marion@... or visit > > the web site at http://www.chargesyndrome.org > > > > 8th International > > CHARGE Syndrome Conference, July, 2007. Information will be available at > > www.chargesyndrome.org or by calling 1-. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2006 Report Share Posted May 4, 2006 I couldnt agree more, there is a cancer ward near where we were staying, and you see the kids pushing their drugs along to go to the hospital goody shop, and you thank your lucky stars its just charge!! lesx > yeah xxxxxxx > > > > > > AWWW I met a little girl that was down the hall from Eva last week > > and she was so cute!! She was about 3 and I could tell she is in and > > out of the hospital alot, her room was just filled with goodies and > > toys. She had a walker and I could see Eva in her eyes, she had such > > a great spirit and was just so cute!!! > > I know I have met and seen alot of people who have given me hope and > > made it not look as bad as we may think it is...(Thanks Ellen!!!) > > It does help to see other childern do so well it gives us hope for > > the future. > > > > Hugs, > > Crystal and Eva (1 year old CHARGEr) > > > > > > > > > > > > While I was waiting for Cedie to come back from her cath, I met > > this > > > little boy name Cole. He is 3 1/2 years old. He was coming by > > TCU > > > to " visit " in between dr appointments. > > > Cole was hospitalized until 1 week before his first birthday. He > > went > > > home on a vent (he had a trach). His pulmonologist (same as > > Cedie's) > > > said that they would be hospitalized again and would not get off > > the > > > vent for a long time if they left at that time. Cole was never > > > hospitalized again. He was off the vent within 7 months and got > > his > > > trach out 9 months after the discharge. > > > What I was most amazed at was how social he was. He was sweet as > > can > > > be and was talking to everyone who passed by! I am always so > > scared of > > > the long term effects for Cedie's long hospital stay. You would > > think > > > that after spending so many months in that kind of environment and > > > always getting messed with around the clock, that it would take a > > toll > > > on their psyche. Cole does'nt know it but he gave me hope that > > Cedie > > > wil have better days! > > > > > > Mock- mom to Dylan and Cedie (10 mth old charger) > > > > > > > > > > > > > > > > > CHARGE SYNDROME LISTSERV PHOTO PAGE: > > http://www.imagestation.com/album/?id=2117043995 > > > > Membership of this email support group does not constitute membership in > > the CHARGE Syndrome Foundation; for information about the CHARGE Syndrome > > Foundation or to become a member (and get the newsletter), > > please contact marion@... or visit > > the web site at http://www.chargesyndrome.org > > > > 8th International > > CHARGE Syndrome Conference, July, 2007. Information will be available at > > www.chargesyndrome.org or by calling 1-. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2006 Report Share Posted May 5, 2006 soem of the ones ive been in with use to poles liek a scooter its funny lol > > I couldnt agree more, there is a cancer ward near where we were > staying, and you see the kids pushing their drugs along to go to the > hospital goody shop, and you thank your lucky stars its just charge!! > lesx > > > > yeah xxxxxxx > > > > > > > > > > AWWW I met a little girl that was down the hall from Eva last week > > > and she was so cute!! She was about 3 and I could tell she is in and > > > out of the hospital alot, her room was just filled with goodies and > > > toys. She had a walker and I could see Eva in her eyes, she had such > > > a great spirit and was just so cute!!! > > > I know I have met and seen alot of people who have given me hope and > > > made it not look as bad as we may think it is...(Thanks Ellen!!!) > > > It does help to see other childern do so well it gives us hope for > > > the future. > > > > > > Hugs, > > > Crystal and Eva (1 year old CHARGEr) > > > > > > > > > > > > > > > > > While I was waiting for Cedie to come back from her cath, I met > > > this > > > > little boy name Cole. He is 3 1/2 years old. He was coming by > > > TCU > > > > to " visit " in between dr appointments. > > > > Cole was hospitalized until 1 week before his first birthday. He > > > went > > > > home on a vent (he had a trach). His pulmonologist (same as > > > Cedie's) > > > > said that they would be hospitalized again and would not get off > > > the > > > > vent for a long time if they left at that time. Cole was never > > > > hospitalized again. He was off the vent within 7 months and got > > > his > > > > trach out 9 months after the discharge. > > > > What I was most amazed at was how social he was. He was sweet as > > > can > > > > be and was talking to everyone who passed by! I am always so > > > scared of > > > > the long term effects for Cedie's long hospital stay. You would > > > think > > > > that after spending so many months in that kind of environment and > > > > always getting messed with around the clock, that it would take a > > > toll > > > > on their psyche. Cole does'nt know it but he gave me hope that > > > Cedie > > > > wil have better days! > > > > > > > > Mock- mom to Dylan and Cedie (10 mth old charger) > > > > > > > > > > > > > > > > > > > > > > > > > CHARGE SYNDROME LISTSERV PHOTO PAGE: > > > http://www.imagestation.com/album/?id=2117043995 > > > > > > Membership of this email support group does not constitute membership > in > > > the CHARGE Syndrome Foundation; for information about the CHARGE > Syndrome > > > Foundation or to become a member (and get the newsletter), > > > please contact marion@... or visit > > > the web site at http://www.chargesyndrome.org > > > > > > 8th International > > > CHARGE Syndrome Conference, July, 2007. Information will be available > at > > > www.chargesyndrome.org or by calling 1-. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2006 Report Share Posted May 5, 2006 soem of the ones ive been in with use to poles liek a scooter its funny lol > > I couldnt agree more, there is a cancer ward near where we were > staying, and you see the kids pushing their drugs along to go to the > hospital goody shop, and you thank your lucky stars its just charge!! > lesx > > > > yeah xxxxxxx > > > > > > > > > > AWWW I met a little girl that was down the hall from Eva last week > > > and she was so cute!! She was about 3 and I could tell she is in and > > > out of the hospital alot, her room was just filled with goodies and > > > toys. She had a walker and I could see Eva in her eyes, she had such > > > a great spirit and was just so cute!!! > > > I know I have met and seen alot of people who have given me hope and > > > made it not look as bad as we may think it is...(Thanks Ellen!!!) > > > It does help to see other childern do so well it gives us hope for > > > the future. > > > > > > Hugs, > > > Crystal and Eva (1 year old CHARGEr) > > > > > > > > > > > > > > > > > While I was waiting for Cedie to come back from her cath, I met > > > this > > > > little boy name Cole. He is 3 1/2 years old. He was coming by > > > TCU > > > > to " visit " in between dr appointments. > > > > Cole was hospitalized until 1 week before his first birthday. He > > > went > > > > home on a vent (he had a trach). His pulmonologist (same as > > > Cedie's) > > > > said that they would be hospitalized again and would not get off > > > the > > > > vent for a long time if they left at that time. Cole was never > > > > hospitalized again. He was off the vent within 7 months and got > > > his > > > > trach out 9 months after the discharge. > > > > What I was most amazed at was how social he was. He was sweet as > > > can > > > > be and was talking to everyone who passed by! I am always so > > > scared of > > > > the long term effects for Cedie's long hospital stay. You would > > > think > > > > that after spending so many months in that kind of environment and > > > > always getting messed with around the clock, that it would take a > > > toll > > > > on their psyche. Cole does'nt know it but he gave me hope that > > > Cedie > > > > wil have better days! > > > > > > > > Mock- mom to Dylan and Cedie (10 mth old charger) > > > > > > > > > > > > > > > > > > > > > > > > > CHARGE SYNDROME LISTSERV PHOTO PAGE: > > > http://www.imagestation.com/album/?id=2117043995 > > > > > > Membership of this email support group does not constitute membership > in > > > the CHARGE Syndrome Foundation; for information about the CHARGE > Syndrome > > > Foundation or to become a member (and get the newsletter), > > > please contact marion@... or visit > > > the web site at http://www.chargesyndrome.org > > > > > > 8th International > > > CHARGE Syndrome Conference, July, 2007. Information will be available > at > > > www.chargesyndrome.org or by calling 1-. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2006 Report Share Posted May 5, 2006 Ellen, That would be my older son Tyler, the first time he is up walking after all of his surgeries last year - just to get a good panic reaction from mom and the staff as he goes sailing by - and he crashed! How have my emotions survived that vibrant boy? Kim > soem of the ones ive been in with use to poles liek a scooter its funny lol > > > > > > I couldnt agree more, there is a cancer ward near where we were > > staying, and you see the kids pushing their drugs along to go to the > > hospital goody shop, and you thank your lucky stars its just charge!! > > lesx > > > > > > > yeah xxxxxxx > > > > > > > > > > > > > > AWWW I met a little girl that was down the hall from Eva last week > > > > and she was so cute!! She was about 3 and I could tell she is in and > > > > out of the hospital alot, her room was just filled with goodies and > > > > toys. She had a walker and I could see Eva in her eyes, she had such > > > > a great spirit and was just so cute!!! > > > > I know I have met and seen alot of people who have given me hope and > > > > made it not look as bad as we may think it is...(Thanks Ellen!!!) > > > > It does help to see other childern do so well it gives us hope for > > > > the future. > > > > > > > > Hugs, > > > > Crystal and Eva (1 year old CHARGEr) > > > > > > > > > > > > > > > > > > > > > > While I was waiting for Cedie to come back from her cath, I met > > > > this > > > > > little boy name Cole. He is 3 1/2 years old. He was coming by > > > > TCU > > > > > to " visit " in between dr appointments. > > > > > Cole was hospitalized until 1 week before his first birthday. He > > > > went > > > > > home on a vent (he had a trach). His pulmonologist (same as > > > > Cedie's) > > > > > said that they would be hospitalized again and would not get off > > > > the > > > > > vent for a long time if they left at that time. Cole was never > > > > > hospitalized again. He was off the vent within 7 months and got > > > > his > > > > > trach out 9 months after the discharge. > > > > > What I was most amazed at was how social he was. He was sweet as > > > > can > > > > > be and was talking to everyone who passed by! I am always so > > > > scared of > > > > > the long term effects for Cedie's long hospital stay. You would > > > > think > > > > > that after spending so many months in that kind of environment and > > > > > always getting messed with around the clock, that it would take a > > > > toll > > > > > on their psyche. Cole does'nt know it but he gave me hope that > > > > Cedie > > > > > wil have better days! > > > > > > > > > > Mock- mom to Dylan and Cedie (10 mth old charger) > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > CHARGE SYNDROME LISTSERV PHOTO PAGE: > > > > http://www.imagestation.com/album/?id=2117043995 > > > > > > > > Membership of this email support group does not constitute membership > > in > > > > the CHARGE Syndrome Foundation; for information about the CHARGE > > Syndrome > > > > Foundation or to become a member (and get the newsletter), > > > > please contact marion@... or visit > > > > the web site at http://www.chargesyndrome.org > > > > > > > > 8th International > > > > CHARGE Syndrome Conference, July, 2007. Information will be available > > at > > > > www.chargesyndrome.org or by calling 1-. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2006 Report Share Posted May 5, 2006 jennifer, I am so glad you had a vision of hope! It is those things that keep us going. I do hope they find the answers you need and that she tolerates the tests well. Kim > While I was waiting for Cedie to come back from her cath, I met this > little boy name Cole. He is 3 1/2 years old. He was coming by TCU > to " visit " in between dr appointments. > Cole was hospitalized until 1 week before his first birthday. He went > home on a vent (he had a trach). His pulmonologist (same as Cedie's) > said that they would be hospitalized again and would not get off the > vent for a long time if they left at that time. Cole was never > hospitalized again. He was off the vent within 7 months and got his > trach out 9 months after the discharge. > What I was most amazed at was how social he was. He was sweet as can > be and was talking to everyone who passed by! I am always so scared of > the long term effects for Cedie's long hospital stay. You would think > that after spending so many months in that kind of environment and > always getting messed with around the clock, that it would take a toll > on their psyche. Cole does'nt know it but he gave me hope that Cedie > wil have better days! > > Mock- mom to Dylan and Cedie (10 mth old charger) > > > > > > > CHARGE SYNDROME LISTSERV PHOTO PAGE: > http://www.imagestation.com/album/?id=2117043995 > > Membership of this email support group does not constitute membership in the CHARGE Syndrome Foundation; for information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter), > please contact marion@... or visit > the web site at http://www.chargesyndrome.org > > 8th International > CHARGE Syndrome Conference, July, 2007. Information will be available at www.chargesyndrome.org or by calling 1-. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2006 Report Share Posted May 5, 2006 jennifer, I am so glad you had a vision of hope! It is those things that keep us going. I do hope they find the answers you need and that she tolerates the tests well. Kim > While I was waiting for Cedie to come back from her cath, I met this > little boy name Cole. He is 3 1/2 years old. He was coming by TCU > to " visit " in between dr appointments. > Cole was hospitalized until 1 week before his first birthday. He went > home on a vent (he had a trach). His pulmonologist (same as Cedie's) > said that they would be hospitalized again and would not get off the > vent for a long time if they left at that time. Cole was never > hospitalized again. He was off the vent within 7 months and got his > trach out 9 months after the discharge. > What I was most amazed at was how social he was. He was sweet as can > be and was talking to everyone who passed by! I am always so scared of > the long term effects for Cedie's long hospital stay. You would think > that after spending so many months in that kind of environment and > always getting messed with around the clock, that it would take a toll > on their psyche. Cole does'nt know it but he gave me hope that Cedie > wil have better days! > > Mock- mom to Dylan and Cedie (10 mth old charger) > > > > > > > CHARGE SYNDROME LISTSERV PHOTO PAGE: > http://www.imagestation.com/album/?id=2117043995 > > Membership of this email support group does not constitute membership in the CHARGE Syndrome Foundation; for information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter), > please contact marion@... or visit > the web site at http://www.chargesyndrome.org > > 8th International > CHARGE Syndrome Conference, July, 2007. Information will be available at www.chargesyndrome.org or by calling 1-. > Quote Link to comment Share on other sites More sharing options...
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