Guest guest Posted April 26, 2006 Report Posted April 26, 2006 , I am praying for Hayley. May she continue to be strong and may she get better soon. Bonnie, Mom to a 23, Patty CHARGE 21, and wife to Quote
Guest guest Posted April 26, 2006 Report Posted April 26, 2006 , I am praying for Hayley. May she continue to be strong and may she get better soon. Bonnie, Mom to a 23, Patty CHARGE 21, and wife to Quote
Guest guest Posted April 28, 2006 Report Posted April 28, 2006 Hi all, I finally got to see my little girl last night.... she looks a little better than when I last saw her a week ago. Still ventilated, lungs still shitty. They tried to unventilate her the other day and not too good... she had many apnea spells and the ventilator was turned back on. The talking plan is to try again to see if she goes okay on her own tomorrow but they said continously dont get your hopes up... so I am not. Just taken day by day that is all you can do I guess. They said we are here in Sydney, 2 hours from home, for a while at the least 1 month... Anyway, I will go now... my family have come to sydney for the weekend. I will give you an update when I can as to how she goes being unventilated for the 4 time. Thanks for your thoughts and prayers, they are being well received. And bless to all that having rough times at the moment and up coming surgery. I might not say much but I am always thinking of you and wishing well. Love xoxoo Mum to Hayley 2years Sydney, Australia at the moment. > > this sent shivers for me, its identical to Amelie, pneumonias > collapsed lungs, and physio, we have now started all this physio round > the clock at home to keep the lungs as free from rubbish as we can > whilst we wait for next surgery, > I know how you feel about catching a cold it happened to me to, its so > unbearable not being able to see her, but its best not to risk it, > > I am certain they will sort Hayley out soon, and we will be praying > for you all, god bless you all > > love and hugs Lesley x Amelie x and Fam > > >> , >> >> I am praying for Hayley. May she continue to be strong and may she get >> better soon. >> >> >> >> >> Bonnie, Mom to a 23, Patty CHARGE 21, and wife to >> >> >> Quote
Guest guest Posted April 28, 2006 Report Posted April 28, 2006 Hi all, I finally got to see my little girl last night.... she looks a little better than when I last saw her a week ago. Still ventilated, lungs still shitty. They tried to unventilate her the other day and not too good... she had many apnea spells and the ventilator was turned back on. The talking plan is to try again to see if she goes okay on her own tomorrow but they said continously dont get your hopes up... so I am not. Just taken day by day that is all you can do I guess. They said we are here in Sydney, 2 hours from home, for a while at the least 1 month... Anyway, I will go now... my family have come to sydney for the weekend. I will give you an update when I can as to how she goes being unventilated for the 4 time. Thanks for your thoughts and prayers, they are being well received. And bless to all that having rough times at the moment and up coming surgery. I might not say much but I am always thinking of you and wishing well. Love xoxoo Mum to Hayley 2years Sydney, Australia at the moment. > > this sent shivers for me, its identical to Amelie, pneumonias > collapsed lungs, and physio, we have now started all this physio round > the clock at home to keep the lungs as free from rubbish as we can > whilst we wait for next surgery, > I know how you feel about catching a cold it happened to me to, its so > unbearable not being able to see her, but its best not to risk it, > > I am certain they will sort Hayley out soon, and we will be praying > for you all, god bless you all > > love and hugs Lesley x Amelie x and Fam > > >> , >> >> I am praying for Hayley. May she continue to be strong and may she get >> better soon. >> >> >> >> >> Bonnie, Mom to a 23, Patty CHARGE 21, and wife to >> >> >> Quote
Guest guest Posted April 28, 2006 Report Posted April 28, 2006 , Sending you prayers across the Nullabor... Thinking of you, hugs, Sharon >Hi all, > >I finally got to see my little girl last night.... she looks a little >better than when I last saw her a week ago. > >Still ventilated, lungs still shitty. They tried to unventilate her the >other day and not too good... she had many apnea spells and the ventilator >was turned back on. >The talking plan is to try again to see if she goes okay on her own >tomorrow but they said continously dont get your hopes up... so I am not. > >Just taken day by day that is all you can do I guess. They said we are >here in Sydney, 2 hours from home, for a while at the least 1 month... >Anyway, I will go now... my family have come to sydney for the weekend. I >will give you an update when I can as to how she goes being unventilated >for the 4 time. > >Thanks for your thoughts and prayers, they are being well received. And >bless to all that having rough times at the moment and up coming surgery. >I might not say much but I am always thinking of you and wishing well. > >Love xoxoo >Mum to Hayley 2years >Sydney, Australia at the moment. > > > > > > > > >> >> this sent shivers for me, its identical to Amelie, pneumonias >> collapsed lungs, and physio, we have now started all this physio round >> the clock at home to keep the lungs as free from rubbish as we can >> whilst we wait for next surgery, >> I know how you feel about catching a cold it happened to me to, its so >> unbearable not being able to see her, but its best not to risk it, >> >> I am certain they will sort Hayley out soon, and we will be praying >> for you all, god bless you all >> >> love and hugs Lesley x Amelie x and Fam >> >> >>> , >>> >>> I am praying for Hayley. May she continue to be strong and may she get >>> better soon. >>> >>> >>> >>> >>> Bonnie, Mom to a 23, Patty CHARGE 21, and wife to >>> >>> >>> Quote
Guest guest Posted May 8, 2006 Report Posted May 8, 2006 Hi all just a quick note to say that Hayley has improved out of site and is on the way home this week. The plan is to go home Thursday,,, so please fingers and legs cross to this happening... I would very much love to take my Little miss home after six weeks in hospital this coming Wednesday. Hope is all well for you all... ( I am way way way behind on the emails) Love NIcole xoxo Australia Quote
Guest guest Posted May 8, 2006 Report Posted May 8, 2006 cool hope shes home soon > > Hi all just a quick note to say that Hayley has improved out of site and > is on the way home this week. > > The plan is to go home Thursday,,, so please fingers and legs cross to > this happening... I would very much love to take my Little miss home after > six weeks in hospital this coming Wednesday. > > Hope is all well for you all... ( I am way way way behind on the emails) > > Love NIcole xoxo > > Australia > > > > > > 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
Guest guest Posted May 8, 2006 Report Posted May 8, 2006 cool hope shes home soon > > Hi all just a quick note to say that Hayley has improved out of site and > is on the way home this week. > > The plan is to go home Thursday,,, so please fingers and legs cross to > this happening... I would very much love to take my Little miss home after > six weeks in hospital this coming Wednesday. > > Hope is all well for you all... ( I am way way way behind on the emails) > > Love NIcole xoxo > > Australia > > > > > > 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
Guest guest Posted May 8, 2006 Report Posted May 8, 2006 cool hope shes home soon > > Hi all just a quick note to say that Hayley has improved out of site and > is on the way home this week. > > The plan is to go home Thursday,,, so please fingers and legs cross to > this happening... I would very much love to take my Little miss home after > six weeks in hospital this coming Wednesday. > > Hope is all well for you all... ( I am way way way behind on the emails) > > Love NIcole xoxo > > Australia > > > > > > 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
Guest guest Posted May 8, 2006 Report Posted May 8, 2006 everything crossed for you both, its a long time and i long for my bath and bed when this happens, and hospital showers are no fun, not in te UK anyway. love Les > Hi all just a quick note to say that Hayley has improved out of site and > is on the way home this week. > > The plan is to go home Thursday,,, so please fingers and legs cross to > this happening... I would very much love to take my Little miss home after > six weeks in hospital this coming Wednesday. > > Hope is all well for you all... ( I am way way way behind on the emails) > > Love NIcole xoxo > > Australia > > > > > > 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
Guest guest Posted May 8, 2006 Report Posted May 8, 2006 everything crossed for you both, its a long time and i long for my bath and bed when this happens, and hospital showers are no fun, not in te UK anyway. love Les > Hi all just a quick note to say that Hayley has improved out of site and > is on the way home this week. > > The plan is to go home Thursday,,, so please fingers and legs cross to > this happening... I would very much love to take my Little miss home after > six weeks in hospital this coming Wednesday. > > Hope is all well for you all... ( I am way way way behind on the emails) > > Love NIcole xoxo > > Australia > > > > > > 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
Guest guest Posted May 8, 2006 Report Posted May 8, 2006 everything crossed for you both, its a long time and i long for my bath and bed when this happens, and hospital showers are no fun, not in te UK anyway. love Les > Hi all just a quick note to say that Hayley has improved out of site and > is on the way home this week. > > The plan is to go home Thursday,,, so please fingers and legs cross to > this happening... I would very much love to take my Little miss home after > six weeks in hospital this coming Wednesday. > > Hope is all well for you all... ( I am way way way behind on the emails) > > Love NIcole xoxo > > Australia > > > > > > 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
Guest guest Posted May 9, 2006 Report Posted May 9, 2006 crap lol > > Okay, you can now uncross your fingers and legs as her sodium levels > dropped to 110 (min is 130) so she in for a little longer.... damn I knew > it was too good to be true to be going home. > > GRRRRRRRRRRRR xoxoxo > AUstralia > > > Nichole, > > Had to laugh visualising Crystal with the list of everything > crossed. All > > the same, also keeping lots of positive thoughts going that Hayley comes > > home very soon. > > > > Flo (mum to 6 in two weeks - CHARGE and Elly age 4 in two > months). > > > > > > > >> > >> , > >> I have my fingers, toes, feet, legs, arms, and eyes crossed that she > >> comes home soon...LOL! > >> Sounds like she is doing great!! > >> > >> Hugs, > >> Crystal and Eva (1 year old CHARGEr) > >> > > > > > > Quote
Guest guest Posted May 9, 2006 Report Posted May 9, 2006 crap lol > > Okay, you can now uncross your fingers and legs as her sodium levels > dropped to 110 (min is 130) so she in for a little longer.... damn I knew > it was too good to be true to be going home. > > GRRRRRRRRRRRR xoxoxo > AUstralia > > > Nichole, > > Had to laugh visualising Crystal with the list of everything > crossed. All > > the same, also keeping lots of positive thoughts going that Hayley comes > > home very soon. > > > > Flo (mum to 6 in two weeks - CHARGE and Elly age 4 in two > months). > > > > > > > >> > >> , > >> I have my fingers, toes, feet, legs, arms, and eyes crossed that she > >> comes home soon...LOL! > >> Sounds like she is doing great!! > >> > >> Hugs, > >> Crystal and Eva (1 year old CHARGEr) > >> > > > > > > Quote
Guest guest Posted May 9, 2006 Report Posted May 9, 2006 crap lol > > Okay, you can now uncross your fingers and legs as her sodium levels > dropped to 110 (min is 130) so she in for a little longer.... damn I knew > it was too good to be true to be going home. > > GRRRRRRRRRRRR xoxoxo > AUstralia > > > Nichole, > > Had to laugh visualising Crystal with the list of everything > crossed. All > > the same, also keeping lots of positive thoughts going that Hayley comes > > home very soon. > > > > Flo (mum to 6 in two weeks - CHARGE and Elly age 4 in two > months). > > > > > > > >> > >> , > >> I have my fingers, toes, feet, legs, arms, and eyes crossed that she > >> comes home soon...LOL! > >> Sounds like she is doing great!! > >> > >> Hugs, > >> Crystal and Eva (1 year old CHARGEr) > >> > > > > > > Quote
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