Guest guest Posted April 2, 2004 Report Share Posted April 2, 2004 Wonderful news for the end of a long week. Kim > Hello everyone, > I've got some good news to share this Friday morning - Kennedy had a great > night (as well as mom & Dad who went to RMH for a good night's sleep). She > was moved to the Cardiac Step-down unit yesterday, she wasn't happy at first > and said " TAKE ME BACK DOWNSTAIRS " - apparently she enjoyed ICU. Anyway, she > settled in and had a good night's sleep. > > This morning, we took her off her oxygen and she is keeping her sats up on her > own on room air so we are happy about that, we were tired of that old mask on > her face. I gave her a sponge bath, cleaned all the old stickers, tape & glue > off of her and put some clean pajamas on her. She looks just absolutely > wonderful, sitting up in bed with jammies, glasses & hearing aid on watching > TV. She stood up for the first time today for a brief period and did well and > had her first pee on the toilet - yay! no more bedpans! > > She tolerated her overnight feeding last night with the pump, so we took her > off the pump this morning and we are going to resume our normal bolus feedings > with her shortly at noon time. Things are really starting to get back to > normal - actually she was being very mischievous this morning and it was so > great that she was acting out - that's our Kennedy, throwing things on the > floor and giggling, etc. > > Anyway, we are expected to get our own room tonight and are excited about that > as they are all private rooms with TV, own bathroom with shower & tub, etc so > we will get some rest and be able to stay here with Kennedy. > > Thanks for all your kind thoughts and notes to us... > > , Graeme & Kennedy > > > > 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 April 2, 2004 Report Share Posted April 2, 2004 , What great news to end the week with. Hope things continue to go well. Hugs and good thoughts to all of you. Betsy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2004 Report Share Posted April 3, 2004 What wonderful progress. Brings back memories, not all bad ones. Continued prayers. Blessings and Hugs, Lynn Kennedy - Friday Hello everyone, I've got some good news to share this Friday morning - Kennedy had a great night (as well as mom & Dad who went to RMH for a good night's sleep). She was moved to the Cardiac Step-down unit yesterday, she wasn't happy at first and said " TAKE ME BACK DOWNSTAIRS " - apparently she enjoyed ICU. Anyway, she settled in and had a good night's sleep. This morning, we took her off her oxygen and she is keeping her sats up on her own on room air so we are happy about that, we were tired of that old mask on her face. I gave her a sponge bath, cleaned all the old stickers, tape & glue off of her and put some clean pajamas on her. She looks just absolutely wonderful, sitting up in bed with jammies, glasses & hearing aid on watching TV. She stood up for the first time today for a brief period and did well and had her first pee on the toilet - yay! no more bedpans! She tolerated her overnight feeding last night with the pump, so we took her off the pump this morning and we are going to resume our normal bolus feedings with her shortly at noon time. Things are really starting to get back to normal - actually she was being very mischievous this morning and it was so great that she was acting out - that's our Kennedy, throwing things on the floor and giggling, etc. Anyway, we are expected to get our own room tonight and are excited about that as they are all private rooms with TV, own bathroom with shower & tub, etc so we will get some rest and be able to stay here with Kennedy. Thanks for all your kind thoughts and notes to us... , Graeme & Kennedy 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 April 3, 2004 Report Share Posted April 3, 2004 Hi everyone! I visited Kenedy, and Greame today and sick kids. Kennedy was very sleepy once I was there. She looked like she partialy just wanted to sleep and partialy wanted to stay awake. It was a realy nice visit! I hope I can see them again, perhaps when kennedy is more up to having more visiters! Chantelle Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2004 Report Share Posted April 3, 2004 Wonderful news!!! Your home away from home, eh? Michele Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2004 Report Share Posted April 4, 2004 Nice to hear from u lisa..glad Kennedy adn u are all doing ok...im sorry again for waking u up the other day .. Belinda > Hello everyone, > I've got some good news to share this Friday morning - Kennedy had a great night (as well as mom & Dad who went to RMH for a good night's sleep). She was moved to the Cardiac Step-down unit yesterday, she wasn't happy at first and said " TAKE ME BACK DOWNSTAIRS " - apparently she enjoyed ICU. Anyway, she settled in and had a good night's sleep. > > This morning, we took her off her oxygen and she is keeping her sats up on her own on room air so we are happy about that, we were tired of that old mask on her face. I gave her a sponge bath, cleaned all the old stickers, tape & glue off of her and put some clean pajamas on her. She looks just absolutely wonderful, sitting up in bed with jammies, glasses & hearing aid on watching TV. She stood up for the first time today for a brief period and did well and had her first pee on the toilet - yay! no more bedpans! > > She tolerated her overnight feeding last night with the pump, so we took her off the pump this morning and we are going to resume our normal bolus feedings with her shortly at noon time. Things are really starting to get back to normal - actually she was being very mischievous this morning and it was so great that she was acting out - that's our Kennedy, throwing things on the floor and giggling, etc. > > Anyway, we are expected to get our own room tonight and are excited about that as they are all private rooms with TV, own bathroom with shower & tub, etc so we will get some rest and be able to stay here with Kennedy. > > Thanks for all your kind thoughts and notes to us... > > , Graeme & Kennedy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2004 Report Share Posted April 5, 2004 No problem Bel, I was in that just drifting off to sleep stage where you wake up and don't know who you are or where you are LOL...took me a few seconds to kick in, I wasn't really asleep asleep. As of today, looks like we'll be going back to Mc House tomorrow, and then staying for a week to go to a post op appointment next week and then FINALLY home home.... > > Hello everyone, > > I've got some good news to share this Friday morning - Kennedy had > a great night (as well as mom & Dad who went to RMH for a good > night's sleep). She was moved to the Cardiac Step-down unit > yesterday, she wasn't happy at first and said " TAKE ME BACK > DOWNSTAIRS " - apparently she enjoyed ICU. Anyway, she settled in > and had a good night's sleep. > > > > This morning, we took her off her oxygen and she is keeping her > sats up on her own on room air so we are happy about that, we were > tired of that old mask on her face. I gave her a sponge bath, > cleaned all the old stickers, tape & glue off of her and put some > clean pajamas on her. She looks just absolutely wonderful, sitting > up in bed with jammies, glasses & hearing aid on watching TV. She > stood up for the first time today for a brief period and did well > and had her first pee on the toilet - yay! no more bedpans! > > > > She tolerated her overnight feeding last night with the pump, so > we took her off the pump this morning and we are going to resume our > normal bolus feedings with her shortly at noon time. Things are > really starting to get back to normal - actually she was being very > mischievous this morning and it was so great that she was acting > out - that's our Kennedy, throwing things on the floor and giggling, > etc. > > > > Anyway, we are expected to get our own room tonight and are > excited about that as they are all private rooms with TV, own > bathroom with shower & tub, etc so we will get some rest and be able > to stay here with Kennedy. > > > > Thanks for all your kind thoughts and notes to us... > > > > , Graeme & Kennedy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2004 Report Share Posted April 5, 2004 Whew-- what a long trip. Did you realize you'd be away from home so long? How are things now? Have you had time in between doctoring issues to continue the " vacation " and see some sites? Are the boys with you or at home? Michele W Re: Kennedy - Friday No problem Bel, I was in that just drifting off to sleep stage where you wake up and don't know who you are or where you are LOL...took me a few seconds to kick in, I wasn't really asleep asleep. As of today, looks like we'll be going back to Mc House tomorrow, and then staying for a week to go to a post op appointment next week and then FINALLY home home.... > > Hello everyone, > > I've got some good news to share this Friday morning - Kennedy had > a great night (as well as mom & Dad who went to RMH for a good > night's sleep). She was moved to the Cardiac Step-down unit > yesterday, she wasn't happy at first and said " TAKE ME BACK > DOWNSTAIRS " - apparently she enjoyed ICU. Anyway, she settled in > and had a good night's sleep. > > > > This morning, we took her off her oxygen and she is keeping her > sats up on her own on room air so we are happy about that, we were > tired of that old mask on her face. I gave her a sponge bath, > cleaned all the old stickers, tape & glue off of her and put some > clean pajamas on her. She looks just absolutely wonderful, sitting > up in bed with jammies, glasses & hearing aid on watching TV. She > stood up for the first time today for a brief period and did well > and had her first pee on the toilet - yay! no more bedpans! > > > > She tolerated her overnight feeding last night with the pump, so > we took her off the pump this morning and we are going to resume our > normal bolus feedings with her shortly at noon time. Things are > really starting to get back to normal - actually she was being very > mischievous this morning and it was so great that she was acting > out - that's our Kennedy, throwing things on the floor and giggling, > etc. > > > > Anyway, we are expected to get our own room tonight and are > excited about that as they are all private rooms with TV, own > bathroom with shower & tub, etc so we will get some rest and be able > to stay here with Kennedy. > > > > Thanks for all your kind thoughts and notes to us... > > > > , Graeme & Kennedy 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 April 7, 2004 Report Share Posted April 7, 2004 , This is such a good report on Kennedy. I am glad she is doing so well. Kay Kennedy - Friday > Hello everyone, > I've got some good news to share this Friday morning - Kennedy had a great night (as well as mom & Dad who went to RMH for a good night's sleep). She was moved to the Cardiac Step-down unit yesterday, she wasn't happy at first and said " TAKE ME BACK DOWNSTAIRS " - apparently she enjoyed ICU. Anyway, she settled in and had a good night's sleep. > > This morning, we took her off her oxygen and she is keeping her sats up on her own on room air so we are happy about that, we were tired of that old mask on her face. I gave her a sponge bath, cleaned all the old stickers, tape & glue off of her and put some clean pajamas on her. She looks just absolutely wonderful, sitting up in bed with jammies, glasses & hearing aid on watching TV. She stood up for the first time today for a brief period and did well and had her first pee on the toilet - yay! no more bedpans! > > She tolerated her overnight feeding last night with the pump, so we took her off the pump this morning and we are going to resume our normal bolus feedings with her shortly at noon time. Things are really starting to get back to normal - actually she was being very mischievous this morning and it was so great that she was acting out - that's our Kennedy, throwing things on the floor and giggling, etc. > > Anyway, we are expected to get our own room tonight and are excited about that as they are all private rooms with TV, own bathroom with shower & tub, etc so we will get some rest and be able to stay here with Kennedy. > > Thanks for all your kind thoughts and notes to us... > > , Graeme & Kennedy > > > > 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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