Guest guest Posted May 2, 2006 Report Posted May 2, 2006 Les I am glad to hear she is feeling better. I hope she can come home soon and she feels so much better. Glad she gained weight also, Eva did since surgery also which I was surprised. Glad you had some good news!! Hugs, Crystal and Eva (1 year old CHARGEr) > > Hi everyone > > Amelie is very well!! a little naughty minx, who has pulled out her > canula from her foot which took 12 hours and two shift changes for > the docs to get a bloody vein!! she has discovered how to misbehave, > or has decided she is not putting up with anymore, I have never seen > her so lively! > > The great news is, she is very well, and today her team viewed her > as they dont work weekend and bank hols, there was no one to compare > her chest xray from the last one, but today the respiratory > consultant said she was really pleased with this xray and how well > shes looking, she said we must be doing a great job at home, and I > cant tell you how good that comment felt, after a horrible couple of > weeks of hard graft trying to keep the green stuff (guacamole as > yuka likes to call it)at bay.Also they sent her poop off as it is > very watery. > > Also the surgery, looming: she said it may be worth while doing the > jejunum tube as a permanent fixture, to avoid any invaisive surgery > at the moment,i dont think she is convinced some of these admissions > have been purely aspiration pneumonias, some of them could have been > viral, as it was winter!! so we shall see, because she is also > convinced this jejunum feeding has helped the reflux tremendously > and she has gained 2 kilos despite the diarrhea, so she is going to > speak to the surgical team and press on for this meeting, which i > have to say is a long time coming, she said it would help if we as > parents pestered him also that he might get a spurt on!! > > YUKA: I wont ever be able to enjoy certain greenish looking foods > again after your brilliant post...thankyou knowing and > all are green makes her feel so normal!! > > If Amelies temp stays down for 24 hours she can come home with oral > antibiotics, especially as she has pulled the canula out and no one > wants to attempt another, but she is so well dont think she needs > it, i also can see a big difference in getting her in earlier than > usual, so this is the way to go!! > > Thanks for all the lovely posts and prayers...I feel on a high > tonight, but that could be because I am going to sleep at home in my > bed tonight as Daz is doing the night shift tonight!! heres to > sleep, and my liitle minx (naughty girl) doing well. > > love and hugs to you all Les xx Amelie xx > Quote
Guest guest Posted May 2, 2006 Report Posted May 2, 2006 Les I am glad to hear she is feeling better. I hope she can come home soon and she feels so much better. Glad she gained weight also, Eva did since surgery also which I was surprised. Glad you had some good news!! Hugs, Crystal and Eva (1 year old CHARGEr) > > Hi everyone > > Amelie is very well!! a little naughty minx, who has pulled out her > canula from her foot which took 12 hours and two shift changes for > the docs to get a bloody vein!! she has discovered how to misbehave, > or has decided she is not putting up with anymore, I have never seen > her so lively! > > The great news is, she is very well, and today her team viewed her > as they dont work weekend and bank hols, there was no one to compare > her chest xray from the last one, but today the respiratory > consultant said she was really pleased with this xray and how well > shes looking, she said we must be doing a great job at home, and I > cant tell you how good that comment felt, after a horrible couple of > weeks of hard graft trying to keep the green stuff (guacamole as > yuka likes to call it)at bay.Also they sent her poop off as it is > very watery. > > Also the surgery, looming: she said it may be worth while doing the > jejunum tube as a permanent fixture, to avoid any invaisive surgery > at the moment,i dont think she is convinced some of these admissions > have been purely aspiration pneumonias, some of them could have been > viral, as it was winter!! so we shall see, because she is also > convinced this jejunum feeding has helped the reflux tremendously > and she has gained 2 kilos despite the diarrhea, so she is going to > speak to the surgical team and press on for this meeting, which i > have to say is a long time coming, she said it would help if we as > parents pestered him also that he might get a spurt on!! > > YUKA: I wont ever be able to enjoy certain greenish looking foods > again after your brilliant post...thankyou knowing and > all are green makes her feel so normal!! > > If Amelies temp stays down for 24 hours she can come home with oral > antibiotics, especially as she has pulled the canula out and no one > wants to attempt another, but she is so well dont think she needs > it, i also can see a big difference in getting her in earlier than > usual, so this is the way to go!! > > Thanks for all the lovely posts and prayers...I feel on a high > tonight, but that could be because I am going to sleep at home in my > bed tonight as Daz is doing the night shift tonight!! heres to > sleep, and my liitle minx (naughty girl) doing well. > > love and hugs to you all Les xx Amelie xx > Quote
Guest guest Posted May 2, 2006 Report Posted May 2, 2006 , that is great news about Amelie! I think our little ones do get tired of the same old business...they've learned to get feisty with what's all going on in their lives. I remember when 4 point blood pressures were being taken on Meagan. She would act like she was going to be just fine with the procedure, but right before the machine would get it's read, she would giggle and wiggle. I swear she knew what she was doing! We would all join in and say " Meggy, what do you think you are doing?!? " ...she would just laugh like she was saying 'You all think this is fun and games huh? I'll show you fun and games!' Anyhow, glad to hear you can sleep in your own bed free of worries. What a great mommy you are! , mommy to Meagan (CHaRgE) and 18 months, and big brother 3 3/4 years, married to the best daddy in the world for 9 years -- Amelie good news!! Hi everyone Amelie is very well!! a little naughty minx, who has pulled out her canula from her foot which took 12 hours and two shift changes for the docs to get a bloody vein!! she has discovered how to misbehave, or has decided she is not putting up with anymore, I have never seen her so lively! The great news is, she is very well, and today her team viewed her as they dont work weekend and bank hols, there was no one to compare her chest xray from the last one, but today the respiratory consultant said she was really pleased with this xray and how well shes looking, she said we must be doing a great job at home, and I cant tell you how good that comment felt, after a horrible couple of weeks of hard graft trying to keep the green stuff (guacamole as yuka likes to call it)at bay.Also they sent her poop off as it is very watery. Also the surgery, looming: she said it may be worth while doing the jejunum tube as a permanent fixture, to avoid any invaisive surgery at the moment,i dont think she is convinced some of these admissions have been purely aspiration pneumonias, some of them could have been viral, as it was winter!! so we shall see, because she is also convinced this jejunum feeding has helped the reflux tremendously and she has gained 2 kilos despite the diarrhea, so she is going to speak to the surgical team and press on for this meeting, which i have to say is a long time coming, she said it would help if we as parents pestered him also that he might get a spurt on!! YUKA: I wont ever be able to enjoy certain greenish looking foods again after your brilliant post...thankyou knowing and all are green makes her feel so normal!! If Amelies temp stays down for 24 hours she can come home with oral antibiotics, especially as she has pulled the canula out and no one wants to attempt another, but she is so well dont think she needs it, i also can see a big difference in getting her in earlier than usual, so this is the way to go!! Thanks for all the lovely posts and prayers...I feel on a high tonight, but that could be because I am going to sleep at home in my bed tonight as Daz is doing the night shift tonight!! heres to sleep, and my liitle minx (naughty girl) doing well. love and hugs to you all Les xx Amelie xx 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 2, 2006 Report Posted May 2, 2006 , that is great news about Amelie! I think our little ones do get tired of the same old business...they've learned to get feisty with what's all going on in their lives. I remember when 4 point blood pressures were being taken on Meagan. She would act like she was going to be just fine with the procedure, but right before the machine would get it's read, she would giggle and wiggle. I swear she knew what she was doing! We would all join in and say " Meggy, what do you think you are doing?!? " ...she would just laugh like she was saying 'You all think this is fun and games huh? I'll show you fun and games!' Anyhow, glad to hear you can sleep in your own bed free of worries. What a great mommy you are! , mommy to Meagan (CHaRgE) and 18 months, and big brother 3 3/4 years, married to the best daddy in the world for 9 years -- Amelie good news!! Hi everyone Amelie is very well!! a little naughty minx, who has pulled out her canula from her foot which took 12 hours and two shift changes for the docs to get a bloody vein!! she has discovered how to misbehave, or has decided she is not putting up with anymore, I have never seen her so lively! The great news is, she is very well, and today her team viewed her as they dont work weekend and bank hols, there was no one to compare her chest xray from the last one, but today the respiratory consultant said she was really pleased with this xray and how well shes looking, she said we must be doing a great job at home, and I cant tell you how good that comment felt, after a horrible couple of weeks of hard graft trying to keep the green stuff (guacamole as yuka likes to call it)at bay.Also they sent her poop off as it is very watery. Also the surgery, looming: she said it may be worth while doing the jejunum tube as a permanent fixture, to avoid any invaisive surgery at the moment,i dont think she is convinced some of these admissions have been purely aspiration pneumonias, some of them could have been viral, as it was winter!! so we shall see, because she is also convinced this jejunum feeding has helped the reflux tremendously and she has gained 2 kilos despite the diarrhea, so she is going to speak to the surgical team and press on for this meeting, which i have to say is a long time coming, she said it would help if we as parents pestered him also that he might get a spurt on!! YUKA: I wont ever be able to enjoy certain greenish looking foods again after your brilliant post...thankyou knowing and all are green makes her feel so normal!! If Amelies temp stays down for 24 hours she can come home with oral antibiotics, especially as she has pulled the canula out and no one wants to attempt another, but she is so well dont think she needs it, i also can see a big difference in getting her in earlier than usual, so this is the way to go!! Thanks for all the lovely posts and prayers...I feel on a high tonight, but that could be because I am going to sleep at home in my bed tonight as Daz is doing the night shift tonight!! heres to sleep, and my liitle minx (naughty girl) doing well. love and hugs to you all Les xx Amelie xx 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 2, 2006 Report Posted May 2, 2006 Dearest Lesley- What a wonderful post!~ {{{{{hugs}}}} to you, Amelie and all the clan! Savor every minute! You deserve it! ) with love, yuka Quote
Guest guest Posted May 2, 2006 Report Posted May 2, 2006 Lesley- I'm so glad that Amelie is feeling well enough to be naughty!! I'll be hoping she is home tomorrow! Michele W mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ Quote
Guest guest Posted May 2, 2006 Report Posted May 2, 2006 Lesley- I'm so glad that Amelie is feeling well enough to be naughty!! I'll be hoping she is home tomorrow! Michele W mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ Quote
Guest guest Posted May 3, 2006 Report Posted May 3, 2006 Ohhh my faveorite trick was pulling out the breating tube! lol. Chantelle > > Hi everyone > > Amelie is very well!! a little naughty minx, who has pulled out her > canula from her foot which took 12 hours and two shift changes for > the docs to get a bloody vein!! she has discovered how to misbehave, > or has decided she is not putting up with anymore, I have never seen > her so lively! > > The great news is, she is very well, and today her team viewed her > as they dont work weekend and bank hols, there was no one to compare > her chest xray from the last one, but today the respiratory > consultant said she was really pleased with this xray and how well > shes looking, she said we must be doing a great job at home, and I > cant tell you how good that comment felt, after a horrible couple of > weeks of hard graft trying to keep the green stuff (guacamole as > yuka likes to call it)at bay.Also they sent her poop off as it is > very watery. > > Also the surgery, looming: she said it may be worth while doing the > jejunum tube as a permanent fixture, to avoid any invaisive surgery > at the moment,i dont think she is convinced some of these admissions > have been purely aspiration pneumonias, some of them could have been > viral, as it was winter!! so we shall see, because she is also > convinced this jejunum feeding has helped the reflux tremendously > and she has gained 2 kilos despite the diarrhea, so she is going to > speak to the surgical team and press on for this meeting, which i > have to say is a long time coming, she said it would help if we as > parents pestered him also that he might get a spurt on!! > > YUKA: I wont ever be able to enjoy certain greenish looking foods > again after your brilliant post...thankyou knowing and > all are green makes her feel so normal!! > > If Amelies temp stays down for 24 hours she can come home with oral > antibiotics, especially as she has pulled the canula out and no one > wants to attempt another, but she is so well dont think she needs > it, i also can see a big difference in getting her in earlier than > usual, so this is the way to go!! > > Thanks for all the lovely posts and prayers...I feel on a high > tonight, but that could be because I am going to sleep at home in my > bed tonight as Daz is doing the night shift tonight!! heres to > sleep, and my liitle minx (naughty girl) doing well. > > love and hugs to you all Les xx Amelie xx > > > > > > 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 3, 2006 Report Posted May 3, 2006 Ohhh my faveorite trick was pulling out the breating tube! lol. Chantelle > > Hi everyone > > Amelie is very well!! a little naughty minx, who has pulled out her > canula from her foot which took 12 hours and two shift changes for > the docs to get a bloody vein!! she has discovered how to misbehave, > or has decided she is not putting up with anymore, I have never seen > her so lively! > > The great news is, she is very well, and today her team viewed her > as they dont work weekend and bank hols, there was no one to compare > her chest xray from the last one, but today the respiratory > consultant said she was really pleased with this xray and how well > shes looking, she said we must be doing a great job at home, and I > cant tell you how good that comment felt, after a horrible couple of > weeks of hard graft trying to keep the green stuff (guacamole as > yuka likes to call it)at bay.Also they sent her poop off as it is > very watery. > > Also the surgery, looming: she said it may be worth while doing the > jejunum tube as a permanent fixture, to avoid any invaisive surgery > at the moment,i dont think she is convinced some of these admissions > have been purely aspiration pneumonias, some of them could have been > viral, as it was winter!! so we shall see, because she is also > convinced this jejunum feeding has helped the reflux tremendously > and she has gained 2 kilos despite the diarrhea, so she is going to > speak to the surgical team and press on for this meeting, which i > have to say is a long time coming, she said it would help if we as > parents pestered him also that he might get a spurt on!! > > YUKA: I wont ever be able to enjoy certain greenish looking foods > again after your brilliant post...thankyou knowing and > all are green makes her feel so normal!! > > If Amelies temp stays down for 24 hours she can come home with oral > antibiotics, especially as she has pulled the canula out and no one > wants to attempt another, but she is so well dont think she needs > it, i also can see a big difference in getting her in earlier than > usual, so this is the way to go!! > > Thanks for all the lovely posts and prayers...I feel on a high > tonight, but that could be because I am going to sleep at home in my > bed tonight as Daz is doing the night shift tonight!! heres to > sleep, and my liitle minx (naughty girl) doing well. > > love and hugs to you all Les xx Amelie xx > > > > > > 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 3, 2006 Report Posted May 3, 2006 Ohhh my faveorite trick was pulling out the breating tube! lol. Chantelle > > Hi everyone > > Amelie is very well!! a little naughty minx, who has pulled out her > canula from her foot which took 12 hours and two shift changes for > the docs to get a bloody vein!! she has discovered how to misbehave, > or has decided she is not putting up with anymore, I have never seen > her so lively! > > The great news is, she is very well, and today her team viewed her > as they dont work weekend and bank hols, there was no one to compare > her chest xray from the last one, but today the respiratory > consultant said she was really pleased with this xray and how well > shes looking, she said we must be doing a great job at home, and I > cant tell you how good that comment felt, after a horrible couple of > weeks of hard graft trying to keep the green stuff (guacamole as > yuka likes to call it)at bay.Also they sent her poop off as it is > very watery. > > Also the surgery, looming: she said it may be worth while doing the > jejunum tube as a permanent fixture, to avoid any invaisive surgery > at the moment,i dont think she is convinced some of these admissions > have been purely aspiration pneumonias, some of them could have been > viral, as it was winter!! so we shall see, because she is also > convinced this jejunum feeding has helped the reflux tremendously > and she has gained 2 kilos despite the diarrhea, so she is going to > speak to the surgical team and press on for this meeting, which i > have to say is a long time coming, she said it would help if we as > parents pestered him also that he might get a spurt on!! > > YUKA: I wont ever be able to enjoy certain greenish looking foods > again after your brilliant post...thankyou knowing and > all are green makes her feel so normal!! > > If Amelies temp stays down for 24 hours she can come home with oral > antibiotics, especially as she has pulled the canula out and no one > wants to attempt another, but she is so well dont think she needs > it, i also can see a big difference in getting her in earlier than > usual, so this is the way to go!! > > Thanks for all the lovely posts and prayers...I feel on a high > tonight, but that could be because I am going to sleep at home in my > bed tonight as Daz is doing the night shift tonight!! heres to > sleep, and my liitle minx (naughty girl) doing well. > > love and hugs to you all Les xx Amelie xx > > > > > > 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 3, 2006 Report Posted May 3, 2006 Lesley, Glad you got some good news for a change!! Here's hoping that Amelie gets to come home tomorrow and stays there for a very long time! Have a good night's sleep in your own bed tonight--there's nothing better. Hugs, The Other (mom to , 4) --------------------------------- Yahoo! Mail goes everywhere you do. Get it on your phone. Quote
Guest guest Posted May 3, 2006 Report Posted May 3, 2006 yay id of loved to of seen that i pull hair but im to scared with drips coz i have no veings LOL yay j tube sounds good i think it is aspiration pnmonias it was that all the tiem with me and they had to get green mucus to love u > > Lesley, > > Glad you got some good news for a change!! Here's hoping that Amelie gets > to come home tomorrow and stays there for a very long time! Have a good > night's sleep in your own bed tonight--there's nothing better. > > Hugs, > The Other (mom to , 4) > > > --------------------------------- > Yahoo! Mail goes everywhere you do. Get it on your phone. > > Quote
Guest guest Posted May 3, 2006 Report Posted May 3, 2006 yay id of loved to of seen that i pull hair but im to scared with drips coz i have no veings LOL yay j tube sounds good i think it is aspiration pnmonias it was that all the tiem with me and they had to get green mucus to love u > > Lesley, > > Glad you got some good news for a change!! Here's hoping that Amelie gets > to come home tomorrow and stays there for a very long time! Have a good > night's sleep in your own bed tonight--there's nothing better. > > Hugs, > The Other (mom to , 4) > > > --------------------------------- > Yahoo! Mail goes everywhere you do. Get it on your phone. > > Quote
Guest guest Posted May 3, 2006 Report Posted May 3, 2006 ew ive pulled out soem by accdent but never intentualy i did once pull out the tube for my ph probe i had it half way out by the tiem the nurse cam back with the stuff for the tape > > Patty used to pull out her needles and stuff. That made me dizzy to see > it > because the blood would squirt all over for a second or two. I hated > that. > > > Bonnie, Mom to a 23, Patty CHARGE 21, and wife to > > > Quote
Guest guest Posted May 3, 2006 Report Posted May 3, 2006 ew ive pulled out soem by accdent but never intentualy i did once pull out the tube for my ph probe i had it half way out by the tiem the nurse cam back with the stuff for the tape > > Patty used to pull out her needles and stuff. That made me dizzy to see > it > because the blood would squirt all over for a second or two. I hated > that. > > > Bonnie, Mom to a 23, Patty CHARGE 21, and wife to > > > Quote
Guest guest Posted May 3, 2006 Report Posted May 3, 2006 ew ive pulled out soem by accdent but never intentualy i did once pull out the tube for my ph probe i had it half way out by the tiem the nurse cam back with the stuff for the tape > > Patty used to pull out her needles and stuff. That made me dizzy to see > it > because the blood would squirt all over for a second or two. I hated > that. > > > Bonnie, Mom to a 23, Patty CHARGE 21, and wife to > > > Quote
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